Jun 07

Where are all the PDD-NOS parents? I invite you to reach out to me. I am not a doctor, not a scientist, but I am a parent of a PDD NOS child who has received services and has watched their child bloom and fight through the disorder to be declassified. My son Eli plays sports, he excels in school, socializes beautifully and communicates with his peers, his teachers and adults. I am no expert, but I can answer your questions and help you come to terms with the disorder. I invite you to post questions, post comments, call me on the phone or email me.

PDD-NOS parents need to get as much help as the do the kids. Get over the denial phase and seek help. It will change your life!

185 Responses to “PDD-NOS Parents”

  1. Kelly Says:

    Hi there, Its so great to read your stories. I have a 3 y/o son who was diagnosed with PDDNOS in March of 2011. He has been a very busy boy. He is very high functioning. Speech and transitions are his biggest challenges. He is the most lovable boy. Very social…however, sharing is emerging but we are still working on it. As a parent I find myself not in denial so much but so badly wanting him to get all the services he can get so that he will no longer be considered PDD. I feel like that is horrible. We love our boy to the ends of the earth and no matter what it will never matter but I just want a world for him that he will enjoy and not struggle so I get so sad at times. He is currently in a 5 full day preschool program with SP, OT and ABA. ABA 2 days a week after school for 2 hrs and I send him to private SP once a week as well. I feel likes its so much but he has made so much progress. He used to bolt on us, not anymore. We can go out to dinner and not worry “what may come”. His words are coming. He talks all day long but not all is understood but he tries so hard. Sorry for going on and on but I just wanted to say your website has been a great source of information for me.

  2. Katy Says:

    I was doing a search for information on raising a 3 year-old boy with PDD-NOS and it brought up your blog. I am really really new to this as my son has just recently been evaluated and this is the diagnosis out there now. I had never heard of this and just wanted to see what other parents had to say about their experiences raising a child with the diagnosis. My son is very high-functioning, exceptionally verbal and communicative, and is not at all delayed in learning. He does, however, have major social concerns, aggression, and prefers most of the time to live in his own world uninterupted. It has been a challenge trying to figure out what to do with him at home in terms of how to handle his frequent outburts. He is receiving behavioral services, but it doesn’t really seem to be all that helpful. He also HATES going to the appointments and sessions so that adds a whole different element to it as well.
    I am glad to have found this website anyways, and was happy to see that you had invited other PDD-NOS parents to reach out to you. It would help me tremendously at this juncture to have other parents to talk to with similar experiences.

  3. Marie Says:

    My son was diagnosed with PDD-NOS at 2 years 3 months. I guess part of me always new something was different with him, but I didn’t want to believe it. I think he is an interesting child. He is very smart and he seems to be progressing more and more every day. He continues to surprise us with the things he does and with what he is capable of.

    It started with an early intervention eval. His doctor was concerned with the fact that he didn’t point and he never said a word in front of him. Personally, I don’t think he is too fond of his doctor, but anyway….He actually didn’t qualify for EI services and I felt a sense of relief. However, the EI team said that we could have a full Speech and Language Eval. So we did. My husband didn’t think it was necessary, but I said it didn’t hurt to do it. My son was a little delayed and so now he is receiving services with a developmental specialist once a week. They called it a clinical judgement saying that he did not qualify, but because he has some delays, he will be picked up for 6 months.

    I had an eval scheduled with a neurologist already. And again, my husband didn’t think it was necessary, but I said it didn’t hurt just to cover all of the bases. Well, he was diagnosed with PDD-NOS. Not everyone agrees with this (his EI team, friends, etc.), but it is what it is. I think we are somewhat in denial as we have not told many of our friends or family. I just don’t want him to be treated any differently. He seems like your typical kid. He does repeat a lot of things we say, but that’s also how kids learn to talk and sometimes he repeats things when it is appropriate. He does have some behavioral issues-mostly with us.

    He is receiving ABA services at home for 2 hours 3x/week. The doctor that diagnosed him recommended a lot more services. I’m afraid to put my son in a preschool for full day/full week. He’s still my baby and is just so young. I am also afraid not to get him the services he needs. I have to admit that I hope he will someday be “declassified”. I’m afraid that if he doesn’t get those services now, he will always have this diagnosis. I’m also not sure how to go about getting him all of the services she recommended. I told the ABA supervisor what the doctor said, but I don’t think she had the specialists available or she wasn’t understanding what I was saying. Now, I have the full report so I can give it to her and go from there. I still feel that the doctor recommended A LOT of services. I do not believe my son is very severe. If you read the report and saw him, you would think the report was about someone else. Seeing him, you would not think he had a diagnosis. I’m sorry I went on and on, but it was nice to let it out to someone who is not biased and isn’t close to the situation. What are your thoughts? Do you have any suggestions for us based on your experience?
    Thanks!

  4. Kelly Says:

    Maria, I have no clue of your son challenges but you sound just like me. It is completely ok to be in denial. However, there comes a point where I feel that you need to overcome your fear of the unknown with your boy and get him all the services you can possibly get. I had the mother load. He had 28 hours a week with ABA and private speech. When preschool started I had my eval in hand and we walked in that that IEP meeting and I was extremely fortunate and they gave me everything. My son has been in school since July 2010. He goes 4 full days and 1 1/2 day. Its an intergrated classroom half of the day and then gets his services the other half. In 6 short months my son is talking. He doesnt stop. He is still delayed but my GOD that boy goes all day long and its music to my ears. We can take him out places, go out to dinner. Its been an amazing transformation and I thank the preschool program and I must say my husband and I have worked our butt off with him as well. I say do it ALL. You will know when its too much. I did cut back on the afterschool sessions they had in his IEP b/c it was just too much. As a mom you will know. Best of luck. its a long road and its a road that we are just beginning but for the first time in 3 1/2 years I truely believe my son with be okay and will have a promising future. Not challenge free but who’s life is challenge free? Take care

  5. sharla Says:

    Hi I loved reading through your stories of your sweet boy. My Austin (8) was diagnosed with pdd-nos in 1st grade and getting to that point was quite the challenge because he is so academically brilliant.
    The social problems and emotional explosions are pretty hard to get around but its nice to know of other parents that have the same struggles and are so willing to reach out and share their stories.

  6. Bernard Says:

    It is a battle, even with Eli being diagnosed and then losing the classification of PDD-NOS I have found that his issues remain. He still stims, he still has some basic social issues but the support services we have received have really helped out with all of this. What are the nature of the social issues Austin is facing, maybe I can offer some suggestions and helpful hints, or maybe one of the other parents can?

  7. dominique denardo Says:

    My 7 year old boy has developed violent explosions when frustrated that include throwing things, assaulting us physically and verbally. I don’t know what to do.

  8. Bernard Says:

    Is your child a special needs child? I would reach out to your pediatrician for advice. Special needs kids need to have this kind of behavior attacked without delay. Kids often have problems expressing themselves so it turns to violence. You need to teach him how to verbalize his emotions in a more appropriate way. When Eli does this I sit him down, offer him a hug and I ask him to tell me why he is mad and educate him that in order to get a response from me he has to approach me correctly. I don’t respond to his outbursts. If you do it reinforces the bad behavior.

  9. Katie Says:

    My son just turned three and since the age of eighteen months, I have known something just wasnt quite right. Early on his peditrician assured me he was fine and insisted things would be more normal by the age of 3. 4 months before his birthday, our pediatrician moved away. He has always been very high maintenance. He slept very little as a baby and always seemed to be on the go. Professional pictures were a nightmare as were our trips to resteraunts and the grocery store. Compared to other kids, he is socially akward and his fits are the worst I have ever seen. But there are several characteristics he never has exhibited. There’s never been ANY arm flapping, starring off, poor eye contact, walking on toes, rituals or lack of joy. He is very affectionate, talks well, and loves to cuddle and play imaginary things. While he adores babies and playing with his ten year old brother, he doesnt express much interest in kids his own age. But, around babies, he immediatly lowers his voice and loves on them. A year ago, he was acessed for autism by early intervention, and his score was low and not a concern to them. At that time, he showed out with his knowledge of alphabet, numbers and shapes. But im having him evaluated by a neurologist in April because he has recently become very aggressive for no reason. Meanwhile, I know he does better for some people and cooperates better for them than me. He acted like we were trying to kill him when i take him to get a hair cut, but sits still when my girlfriend takes him. Day care (we sont have a special needs one in our small town) calls me at least once a week to get him- sometimes while I am at work. Could it be that he is just ‘playing’ me and knows better all along? My mom thinks I should spank him more often than I do but I dont know if he can help it. Any advice would be greatly appreciated!!!

  10. Bernard Says:

    There are a million things that can be going on here.Most of the spanking will never solve. I am not going to lecture on the pro and con of spanking but I will say this. Meeting bad behavior with spanking provides negative attention that can cause kids to lash out more. In my opinion there are better ways to handle the situation. Spanking is just not an option, ESPECIALLY if your child is on spectrum no matter how high functioning they are.

    Kids can definitely play their parents. I would strongly suggest you evaluate your approach with your child and realize that there is a right and wrong way to deal with kids. I would also seek a second opinion and get a child psychologist involved that deals with autism and see what they say about his behavior.

  11. Katie Says:

    Thank you for your response. I will refer your reply to my mom who definately needs the reminder. How do you handle meltdowns and slaps in the face (which usually occurs when Im either saying no or telling him not to behave that way) when we are in public? He also slaps his teachers in the face. If he is on the spectrum, how do you handle that? One more thing- consider again, that he is on the spectrum, could you please explain my son Luke’s reasoning for this: Although he likes music on tv, when we get in the car and the radio is on, the first thing he says is ‘turn it off’! What’s up with that? He is running the show at our house and we need some suggestions. Thank you so much!

  12. Katie Says:

    P.S- Luke wont sit in time out. He runs off and it turns into a power struggle…an exhausting one.

  13. Bernard Says:

    I can’t answer your question, the physical slapping is a learned behavior. There are better ways, it takes a calm approach. You have to verbalize the disappointment and take charge of the situation. He does not sit in timeout? Every single time he gets up and runs, I would pick him up, put him back in his timeout spot and restart the clock. He gets up again, you put him back again. Stick to your guns. Using a calming voice and explain without sounding angry why the behavior is inappropriate. No toys, no sweet talk, nothing but him in his spot for # of minutes that he is old. 3? 3 minutes, not a second sooner, not a second longer followed by asking him and making him explain WHY he is in timeout. When all finished a hug and a kiss.

    A lot of spectrum kids have issues with noise, especially if it is loud. Try putting on his favorite music (Laurie Berkner etc) and see if he tolerates it better. He is the kid, you are the adult. Guess what – kids don’t win the battles, the parents do.

  14. Carol Says:

    Hi my 8 year old son Matthew was just diagnosed PDD-NOS Monday. It is really not a surprise, we have considered it from time to time. He has had services for SPD since he was 18 months. He has had many services over the years and when he was five he was also given the diagnosis ADHD. I know that all these years we have done everything we could for him and loved him to pieces – none of that changes. I know that he is the same boy he was Monday morning. The school team is so supportive. Yet it is still hard to wrap my head around. Tonight I find it a little sad/scary.

  15. Bernard Says:

    It will become easier to accept. The diagnosis is a good one because it opens doors for him. You will have to fight to get him all of the services you can. If they offer you five services, ask for seven. If they give you 3 days a week, demand 5. Eli still suffers from a lot of the PDD-NOS issues but he is a completely functional and happy child. He is MORE social than most kids even in the face of being denied by less social kids. He is polite, well mannered and smarter than 99% of the kids out there. Why? Because Jodi and I made sure that he had everything he needed and then asked for more. Don’t be afraid, sad or scared. Matthew will overcome everything and he will have a great life, all it takes is your continued dedication to him and some help (which I am happy to read he is receiving). A lot of parents see PDD-NOS as a death sentence for their kids. It is not, in fact it is a license of learning. A PDD-NOS kid just learns differently. When you find the trigger that opens him up a new child will emerge. Good luck. Feel free to drop me an email if you have questions!

  16. Nicole Says:

    My son was diagnosed at 2years and 3months old with PDd-nos and as a young mother of 3 I was very scared and really didn’t know what to do. I looked up information on it on the Internet and I’m always reading up on it in books as well. I wondered were my twins going to be this way? Did I do something wrong with him while carrying him? I followed all the steps I was suppose to and he hit every milestone until it was time to start talking. I was also mad due to the fact I felt like something was wrong and his pediatrician kept saying he just needs time and I could have been gave my son help! Nevertheless I am seeking help to enroll him back into therapy as well as my twins because they seem to be developmentally delayed in a few areas and it’s making wonder if my last born will be this way. I am so scared at the moment but imtrying to keep an positive outlook on things now. My baby is different yet he is so lovable most of the time but I need to know what are some ways to discipline him without everyone making it seem like I’m abusing him?

  17. Bernard Says:

    That is a great question, but before I offer my opinion I will say this: I do not believe that there is anything anyone can do differently during the pregnancy that will result in a person having a PDD-NOS child. If you didn’t smoke, do drugs or drink then I think you were fine, if you did those things, then you put your child at risk. Nobody knows yet what causes PDD-NOS or Autism. For all we know it could be some ingredient in shampoo or a type of candy. Nobody knows if it comes from the dad or the mom or a crazy combination. So in other words, never blame yourself. I don’t blame my wife, and I don’t blame myself and I wouldn’t want Eli any other way because it is his entire package that I adore as a dad.

    On the discipline side of the fence. This is hard because most PDD-NOS kids are ultra sensitive and they might NOT have control over all of their actions. Discipline must change forms to something positive and nurturing like 75% of the time. I tend to yell at Eli when he does something bad that I feel he can control. I will not baby him because if I do, he acts like a baby. The bottom line is that there are going to be situations where you have to be firm, others where you have to be gentle but you always have to explain why. You are a parent, and you know instinctively when you have to be fierce and when you have to be subtle. Just because they are PDD-NOS does not give them a free ride from punishment.

    For Eli, when I have to discipline him he feels that I don’t love him anymore. I explain the difference between being mad and disappointed. I tell him that no matter what I will always love him, but that does not mean I have to like the way he is acting or that I am not allowed to be mad at him…he only cares that I still love him. So I start off saying, I love you Eli, but if you ever do that garbage again I will ground you and explain why, followed up that I am disappointed in the choice he made. That usually corrects everything.

  18. Kelly F. Says:

    My 2nd son, Danny, was diagnosed with PDD-NOS in December 2011, he was 2 years and 3 months. We were concerned when he didn’t have many words, would not point, or express himself verbally. We were devastated with this diagnosis. My husband is so afraid that he will be labeled and treated differently by his peers.

    At this time, we have EI services once a week and ABA 2 hours a day, 3 days a week. He has been talking more, but not to where we would want him to be.

    He is such a fun, sweet, loving little boy. He brings joy to everyone that meets him. He loves to play with his big brother Ryan, and chocolate Labrador, Guinness! He has an amazing personality and is so special in so many ways.

    My husband and I are so worried that his lack of verbal communicate will not allow him to be a normal kid. Will he be able to make friends? Will he be able to experience every opportunity that he can? Will life be full of challenges? Will he be able to live a normal life? We hope that our unconditional love and support will help him through the most challenging moments to come.

  19. Bernard Says:

    You will be surprised on how normal he will be. We PDD-NOS parents have all the same concerns but in the end Danny will have a great core of friends, he will find love, he will have a job and he will be successful in his life as long as he has a great support system, loving parents and services. He already has the basics because he is sweet, loving and happy. I would request more services and make sure that you take the steps to provide services at home!

    Eli has a great group of friends, he has a great relationship with his family, teachers and does everything non PDD-NOS kids do. Danny will have challenges, but he will overcome them just like Eli does. I credit the services he has and continues to receive. Good luck and give Danny praise when he does great things and don’t be afraid to be blunt and honest when he does not do things correctly. I have seen so many PDD-NOS parents coddle their kids. They don’t need that, they need parents who are parents just as much as they need parents who are friends.

  20. Kelly F. Says:

    Thank you for that response! It brought tears to me eyes. We haven’t met, or spoken to any other parents out there with a PDD-NOS child so it was nice to find your website. You have a beautiful family, and you seem to be a great Dad! :)

    Thanks for all the kind words, encouragement, and advice, It means a lot coming from another PDD-NOS parent. It is also great to hear that Eli is doing wonderful things. Thanks to a loving, supportive family :)

  21. Sheila Says:

    Hi there!! First of all, I find your blog to be completely awesome!!! It’s a always a comfort to know that there are other people out there who share the same fears and joys that come with being a parent of an ASD child.

    My 5 yeard old was diagnosed with PDD-NOS when he was 2 1/2 and the recommendation to evaluate him came from his pediatrcian since my son had a considerable speech delay and the months of SP therapy that he had received hadn’t really made that big of a difference in his speech. I have to admit that I was worried about my son’s speech delay but I never thought it would be something other than that. He was such a healthy, and loveable baby. He had reached all of his milestones at the appropriate time, with the exception of speech. He did have a couple of isolated words in his vocabulary but he was never able to put two or more words together.

    So we had him evaluated, and sure enough he was diagnosed with PDD-NOS. Thru EI, my son was able to go to Pree-school, even though he was 3 at the time, and he received SPT and OT twice a week. We also enrolled him in daycare for socialization purposes and I got him private SPT services 4 days out of the week for an hour a day.

    The reports that I got from school and daycare were good. He kept to himself and preffered to play by himself, but he also liked to hug other kids and always complied with tasks. But then things started changing when he turned 4 years old. Because of rezoning issues in the school district, my son had to change schools for the new school year. Also, since my insurance denied coverage for speech therapy, we also had to stop the private sessions. He started to get aggressive with people around him. And the first reports came from daycare, then I started hearing them from the school as well. This started to worry me, because my son had always been so loving and kind with those around him. His teacher explained to me that it he tends to have those outbursts when he feels frustrated or feels like someone is invading his space or they want to get things that are in his immediate area. He has gotten better at controlling his outburts, but they are not totally gone.

    I feel like my son’s biggest challenge is his speech and not being able to communicate what he wants, needs or feels. I know that he receives SPT at school, but I honestly don’t think that 2 thirty minute sessions a week is nearly enough to help him make any progress. He needs intensive speech therapy. I work with him at home, but my little guy can be so stubborn at times, that he makes it hard, but I don’t give up. I’m just afraid that it won’t be enough to make a difference. I am desperatly trying to figure out how to enroll him back in private SPT but since our salary isn’t low enough to qualify for government aid and we don’t make enough to pay out of pocket, we are stuck. And I’m so scared of “what if”. I don’t know if what I’m doing right now will be enough to give him a better chance at a “normal” life. I mean, I can’t say that there hasn’t been any progress, because there has been. It just seems like it is very, very slow. My son is 5 years old now, and we have gotten him from pointing and pulling our hands to get what he wants to know saying what he wants in 3 word sentences. But he still has a very limited vocabulary, roughly around 70 words. His eye contact is getting better but we are still working with him on getting his attention when called. Sometimes I can call his name up to 6 or 8 times and he still won’t turn and look at me. He has picked up humming, which is something that he didn’t use to do. But I’ve noticed that he only does it when he’s really excited about something, either a cartoon he’s watching or a game he’s playing.

    I know that we have a long road ahead of us and I’m willing to do everything in my power to get my little guy to bloom, especially with his speech. I’m just afraid that without being able to provide him with additional speech therapy services, my son will not be able to reach his full potential. I’m hoping that what he receives at school and what I do at home with him will be enough, but at the back of my mind there’s always the questions: will it be enough?

  22. Bernard Says:

    Sheila,

    You will always ask yourself is it enough and the answer should always be no. It is never going to be enough. I know that sounds harsh but as a parent who loves their child we can never get enough services to try to make them better. This being said, I think your fight is with the school district. You have to reach out to the school system and if they offer you two sessions per week at 30 minutes you demand 5 days a week at 60 minutes. Compromise at 4 days a week for 45 minutes. With speech you should also demand OT, a SEIT, and every other service available. The secret words that worked with us during the meetings with the school is “You are reading a piece of paper that does not accurately represent the reality of my child’s situation. He has a lifelong fight ahead of in every moment of every day. How can you limit his chance to succeed and be as normal as possible”. When you put his disability on them and blame them they always get struck in the heart. You have to play every cheap card you can play. Tell them that they are the ones who go home and work with him five hours a day and that he does better when it is not Mom who is working with them. Cry, stomp, scream, get pissed. The bottom line is that your child needs more services and you have to figure out a way to get them. It won’t be easy, but you can do it.

    We were lucky. Speech was never a problem but pragmatic language is. I can imagine how frustrating it is for your child to not be able to verbalize, you just have to remember it is not because they don’t want to, it is because the brain is not letting him. Good luck.

  23. Sheila Says:

    Thank you so much for your response. It’s great to hear tips and things that have worked with other families when it comes to providing as many services as needed for our children. And it’s always comforting to read about the great progress that other kids have experienced. That is what we are striving for.

    You have a wonderful family and it’s really exciting to see Eli’s progress. Many thanks for your advice :)

  24. Bernard Says:

    Sheila,

    Thanks for stopping by and posting your question. Being a parent of a special needs child is hard. For every stim Eli does or for every behavior that I don’t see improving breaks my heart, but he is a good boy, a smart boy and all I can do is have faith that as he gets older he will learn to control himself and behave appropriately. He does not understand why he does it and he can’t explain what he is thinking when it happens, he tells me: “Dad, it is too hard to explain, I don’t have the words for it”. Our job as parents is to love them and give them the best shot possible, no matter how many people we have to steamroll over to do it.

  25. Jennfier Says:

    I have twins boys who are turning 16 months on the 1st of August. I knew that Beckett was different from about 3 months old. He was flacid, didn’t make eye contact and would need to be placed in a pack n’ play for bouts of time to calm down after being over-stimulated by social interactions. I brought it to my doctor’s attention and he told me I was just seeing “different personalities” between the boys. Fastforward to 7 months old and he did not babble, no gestures, had just learned to hold a toy and did not seem to enjoy interacting with his brother and 2 year old sister. I finally got a referral to our state’s early intervention program. He has received 1 hour a week of services since then. We recently had him assessed and he was diagnosed with PDD-NOS. He has no words, does not gesture, no real joint attention though he does smile and make eye contact. He likes to play on his own and he has stereotypical/repetitive behaviors (stares at hands, flaps etc.) Now we are trying to figure out how to get services here in Washington State. I want to get him in ABA therapy but our state does not have any free services. I left my job to stay home and work with the kids. That cut our income down by half. It is frustrating as I feel there is a critical time period that is closing on me. To add to it, my other twin son is also showing signs. He appeared to be typical developing until now. He does not gesture, no words, rarely turns to his name and has poor eye contact/next to no joint attention. I am dreading having him assessed. Ou daughter has moderate hearing loss and wears hearing aids and is also receiving services. We thought maybe Landon had hearing loss but both boys tested fine in that area. I guess we are feeling overwhelmed and not sure where to start to begin helping these sweet little boys :(

  26. Bernard Says:

    I am not sure how Washington State works but my best advice is to go through the school system. In NY our daycare provider noticed the issues with Eli and we ended up going through the states early intervention program and the school system. The fight you have to fight is getting him services. As you know, 1 hour a week is not enough and you need to find some outreach program in your area that can help provide more services, we are talking about a few hours per day for five days a week type of help.

    I always tell the parents the same thing. The best and only help you can offer your child is the services provided by an expert. Many parents never have the courage to realize that their child is different and has problems. Those who do have to learn how to manipulate the system and get the most services possible. For every hour they give you demand 10 and compromise at 7, if they offer seven, demand 9 and settle at 8. Each review, you tell them he is not improving and you are seeing regression.

    If this means you have to enroll your child in daycare to get these services then you have to consider it. I wish you luck, frustration is normal and I feel for you. Good services may not correct everything but it will make a huge difference. Also don’t be shocked that the diagnosis changes over time, what can’t be classified at this early age is always PDD-NOS (not otherwise specified meaning, they don’t know what is wrong, there is just a development disorder). I would highly suggest finding a neurologist to makes sure medically speaking there is nothing else going on that causes a representation of delay like this.

  27. ERIN Says:

    Just wanted to say thank you for taking the time to create this blog. Researching PDD NOS on-line is often disheartening so it was a rare treat to discover an up-beat discussion on this issue. My gorgeous boy is 5 and he was diagnosed at 4 with PDD NOS. He reached his developmental milestones early but he regressed in his speaking from the age of 3 which prompted a speech and language therapist to refer him to what we call in Ireland the Early Intervention Team. In retrospect, the fact that he had a severe sleep disorder should have raised some flags but it didn’t. On the due date of my third child, his diagnosis was confirmed. That was almost a year ago. Looking back, it was a year of painful lows and cautiously optimistic highs. I can only imagine your mixed emotions when Eli was declassified. I often pray that Cillian (Irish name – like Gillian but with a C) will be declassified but then I worry whether he could cope without the systems we’ve put in place for him in mainstream school. I know that the causes of PDD NOS are unknown but I was wondering if you had come across any suggestion that a difficult birth could contribute to this diagnosis. Cillian had a distressed birth. The cord was wrapped around his neck and suction was eventually used. I have heard anecdotally of a link between suction and autism and I was wondering whether ithis issue is getting any air time in the US? An unpleasant issue to raise and you may well question the wisdom of doing so but in truth I feel in some way responsible for what happened during labour. Thanks again for doing such a wonderful job with this website and reaching out to worried parents all over the world. Go raith mile maith agat (one million thank yous).

  28. Lisa Says:

    Hello. My 13 year old nephew was recently diagnosed with PDD-NOS. we are in the process of looking for schools – all of which are private schools recommended by the psychiatrist who diagnosed him. He lives in NY and he has attended two programs referred by his public school both of which are not appropriate for him. We really don’t know where to start to:
    a. Understand how to create a treatment plan to help him,
    b. find the appropriate school,
    c. What approach to take with his current school district to ensure they will pay for whatever he needs,
    d. How to help my sister find support for herself so she will know how best to help him
    I’m sure I’m not being very thorough here but we just don’t know where to begin. Any thoughts or insight you can provide would be very much appreciated

  29. Bernard Says:

    I have some contacts that I can ask. Where in NY do you live? I would be happy to do some research and see if there are any non-private schools that are amazing in treating PDD-NOS kids. If you were on Long Island I would highly recommend NIS.

    Your four points are great starts. The more services you can get, the better. The School is the ONLY way I know of to get the state to pick up the tab. So you have to fight for services. You mentioned this is for your nephew. The parents or legal guardians have to make the fight. They offer you two hours, you demand 8 (settle for 6). The offer you 10, demand 14. You get the picture.

    Have your sister reach out to me, parents tend to freak out, go through denial and want to reject that their child has problems. I did, most do. Nothing to be ashamed about. What are the symptoms your nephew has that pointed to PDD-NOS? It is an odd diagnosis at such a late age, PDD-NOS usually means they don’t really know where on the spectrum the child falls. At 13….I would assume the diagnosis to be a bit deeper than just PDD-NOS. I am here to help!

  30. Stacie Says:

    This is a great site. My son was diagnosed with PDD-NOS at 3. His main issue was speech delay. We got him into Early Intervention preschool and did private OT services to work on fine/gross motor. He is 7 now. His language is now typical and we just graduated from OT. During OT/School we discovered he has some pretty substantial sensory issues. He needs deep pressure and proprioceptive movement to help him out and overall I felt like KG went okay. We’ve started 1st grade and he is having a lot of outbursts in class. I struggle so much when he tells me what he does in class. I feel embarrassed and sad for him and the kids he’s in class with. Then I feel guilty because I truly believe he can’t control the behaviors. We do not baby him. There are time-outs and loss of privileges for his actions. Finally after a tough day yesterday he said he didn’t like what his teacher was saying…which came around to how EVERYTHING in the schedule is different from Kindergarten. The other struggle is that they use a “clip up-clip down” behavior system at the school. I loved it last year, we tie it to rewards/privilege loss at home, use one at home, etc….Now his teacher feels it doesn’t change his behavior to clip him down when he’s not behaving and it confuses my son and us about what’s really happening. He’s a super honest kid so he tells me what he does wrong. Unfortunately he can’t yet verbalize “why” entirely – I think it’s distress over change/sensory issues.
    As a parent who has done nearly everything under the sun to work with my kiddo and get him lots of services it is SOOOO hard sometimes to cope with the behaviors – even despite all of the progress, how well behaved he is at home, and how well he does academically. Thanks for the site. It makes me feel less alone. I’m always open to advice, suggestions, etc from the gallery ;)

  31. omaira Says:

    Hello, just came across this site and I think its great! I have 5 year old diagnosed @ 2yrs PDD .my joey has come a long way from not talking to speaking.. not perfect but he can say what he wants or feels,but still have some behavior issues here and there that are tuff to handle sometimes. In 5 days he will start kinder @ public school and I’m soo nervous For him,my fear is the change from preschool To a whole new environment will set him off! And that they might treat him different.My husband keeps telling me he’ll do great wich I”m really hoping he does great,he’s a very bright child, loves computers and loves to give kisses and hugs and tells me he loves me.what can I do at home to help with his behavior?will a behavior chart work?I was planning on making one,and I’ve been trying the time outs which work most of the time,and try to not give in,his behavior has improved as he’s gotten older its much less but I’m afraid not enough that will be tolerable at school.sorry for rambling just so nervous for him

  32. Bernard Says:

    Behavior charts are great. Schedules are great, it helps normalize a routine but I offer this suggestion. PDD-NOS and most spectrum kids do better with a tightly controlled routine. However I believe strongly in trying to help my son adjust to new things and to changes in the schedule so it is a double edged sword. The idea is to get them to accept change and handle it well, so how does putting a child into a set schedule help do that? Each parent and child is different so I suggest using your gut. Overall – charts, rewards, all that stuff is fantastic for a spectrum child!

  33. Terri Pruner Says:

    I am a mother to a 17 year old young man with PDD-NOS. We did not receive our diagnosis until he was 14 years old. We started testing at 2 1/2 but because he was so high functioning, we would hit big road blocks. We tried everything we could come up with on our own. The lack of autism awareness in our area of Louisiana was another obstacle. Finally after much bullying at school and a move to Texas, someone heard our cry for help. Texas Children’s Hospital and Gregory Portland ISD finally gave us our diagnosis of PDD-NOS. We have amazing support with the local school administration. We have kept him involved with sports since he was 3 years old so he would have to work in group settings. He still however is a loner outside of his sports. He likes to socialize on the computer through games and such. He also enjoys making and editing videos. The problem we have, it is ALL on the computer. Because of all the years of bullying, he has the “nobody likes me complex”, so he doesn’t go out of his way to leave his safe zone in front of his game station or computer. We have worked long and hard on teaching him to filtering his thoughts before saying things out loud in public. I am so worried about him graduating this school year. We want him to further his education, but am worried he is still so immature socially, and he lacks the drive to leave his computer world.
    Are there any parents out there who have been in our shoes who can offer some suggestions. I would also love to hear from any young men who have PDD-NOS who can give me first hand knowledge.

  34. Bernard Says:

    Trust me when I say that the entire social computer era has turned our world upside down. Having PDD-NOS and being in an era where “normal” people are losing their social abilities is hard enough. I am unfortunately completely unexperienced with dealing with PDD-NOS at age 14 much less at 17. Does your son have a small social group of friends or does he rely on the computer completely. If he has friends who are also into computers I would suggest having a LAN party at your house where his computer friends can bring their PC’s over and they can interact socially while playing games. It might be a bridge to encouraging a more non-technical form of communication.

    If anyone has any advice please send it my way and I will forward it to you.

  35. Erica Says:

    Hello! I just happened across this blog today. How exciting to come across people who are living a similar life. Its like running in to another person from America while vacationing in China. I do feel like a foreigner sometimes when I compare myself to other parents and find myself withholding from friendships with them. My day to day life with my 7 year old PDD-NOS son can be challenging at times as I assume all parents are challenged from time to time. I think I’m training for a marathon while they’re doing some Richard Simmons exercise videos! (I’m the queen of analogies!) We are at a good spot now, but you never know how long that will last. Im happy we found a great school with a very eager staff. Kindergarten was hellish until we transferred him to another public school. I love my son more than anything in the world and I would not for one second ever consider wishing he were “normal” or “mainstream”. He’s a diamond in the rough. I just need to figure out how to polish him up! Looking forward to rubbing elbows with some peers ;-)

  36. Bridget Says:

    WOW!! Hello all! I read every last post on this website…and my eyes are tired! Anyways, gosh, where to begin??? My almost 2 1/2 year old son was diagnosed this past Monday with the PDD-NOS diagnosis. His doctor even told us that our little son Jack was really difficult to diagnose. We actually thought he did great with the tests that the child psychologist did…but NOPE, the doctor said he missed being diagnosed autistic by 1 point! Wow we were surprised! We were told that he’s off the charts with his cognitive skills, problem solving, and he knows by sight all of his letters, can count to 20, knows all of his shapes, colors and can sing 19 songs by heart with melody and words.
    The doctor told us that he’s lacking in “normal” social behavior and then lacking in speech. I may be in denial right now…seriously confused….my son is well-behaved – we did notice some of the “outbursts” around age 1, but nothing we couldn’t handle. We used “tone” with him, gave him the “eye” and he’d straighten up. He listens very well now, we can sit in church (Catholic mind you) and he’s so good. He just knows and understands to be quiet. He’s had a sense of humor since he was about 3 months old. He’s extremely clever, loves to tease momma (me), sings a lot, loves his books, and plays catch with us. He had micconeum aspirartion syndrome when he was born…hence the Neurologist just thinks that Jack is “delayed”. In fact, the doctor we saw on Monday told us that he doesn’t really see “eye to eye” with our neurologist. He says that our neurologist isn’t up to date with the new modern medicine. I guess this could be contributing to why I may be in some denial. I’m NOT going to deny that my son is delayed. He is….he rolled everywhere and didn’t start crawling until age 16 months. He finally started walking at 25 months. He’s been in physical therapy since he’s been 16 months old too. It was his PT that set us up for the Early Intervention stuff…so he’s had all of the counselors working with me, his daycare for some time now. Anyways, his fine motor skills get better everyday, as do his gross ones. He is communicating….he can tell us what he wants by pointing and trying to use his words. He is definitely delayed in speech though…but I do see him progressing daily. He’s VERY picky with food, texture….we have to convince him that we’re NOT trying to poison him when a new food is introduced. Once the first bite is put in his mouth, he’s good to go. Our son is extremely funny too! There’s never a dull moment with him. He makes everyone laugh, I really think he’s going to do stand up. He won’t play with the kids at daycare right now…but, I just found out today that he started to play with other children today! Anyways, I’m very fortunate because I live in California where a lot of services are offered. Perhaps my son is doing so well already because we intervened when he was so young. ALTHOUGH, I told our pediatirician that he wasn’t walking at 1 yr old…he didn’t seem worried! UGH>he has low muscle tone in his arms and legs only too. So, with the hand flapping, the head nodding, the low tone in his arms & legs, the delayed speech, and the anti-social skills – YES, I can see why he was diagnosed with the PDD-NOS. I truly feel with my whole heart and soul that he will grow out of it…I also think that modern medicine tends to “grade” our children like they’re a math problem and NOT a person though too. I think it’s great to use prudence and get all of the help your child needs. This isn’t going to hurt my son, it can only help him! I just hate modern psychologist….my son got a bad grade on one of the questions too….it said, “Does your son carry loose change in his pocket to go into the store to buy things?” SERIOUSLY??? Yeah, he got a grade of a zero for that question!
    I’m sorry, I know I babbled and rambled on! Honestly, I cried my eyes out yesterday….I was so damn scared for my baby! I desperately want him to have a normal childhood and adult life! This whole thing is so scary! It’s hard to understand this diagnosis…especially when your child scores “off the charts” in some of the areas. Does anyone out there know any really really smart people/geniuses that have great social skills??? Perhaps the world is starting to really over think our sons?? I do think some children aren’t diagnosed properly though….any thoughts on that one? Or does that just sound like a denial question? Thanks for allowing me therapeutically write on your site. God bless all of your parents out there! I’m with you! It’s so scary!

  37. Bernard Says:

    Bridget,

    I hear a lot of stories from a lot of parents. I get about 10 emails a week from people who’s children have been diagnosed with PDD-NOS and other forms of Autism (in 2013) the PDD-NOS diagnosis will no longer exist and it will all be classified as Autism Spectrum Disorder. But of all the reading I have done and all the contact I have had from parents your child seems the most like my son. Great services will help out a lot. Eli was always delayed about six months, but is extremely intelligent. He has learned how to behave socially, more so than most kids who are not on the spectrum. I think that you are doing the right thing. Fight for services and always ask for more. My advice is to not treat him like he has PDD-NOS because in the grand scheme of things, that really doesn’t matter. Never let it be an excuse for him. When Eli does something inappropriate I don’t look at the parents and say, he is PDD-NOS or has Aspergers. I simply pull him aside and point out the situation and how he can make more appropriate decisions. I also let him be a kid and sometimes kids want to be silly. It is all about balance.

    I cry all the time thinking about Eli’s future. You will cry all of the time as well. But of all the things you describe, they are things that are going to be solved solid help. The more help you provide him, the more he will overcome. Have hope, delays are just delays. PDD-NOS is NOT a death sentence and frankly the most important thing I can tell you is that most neurologists like to diagnose because it is what they do. You can take a perfectly “normal” child and bring them to a head doc and they will come up with something wrong. Sometimes they look too hard.

    It is funny, you mentioned the test and how he did so well. So did Eli, so much so that I was shocked he was diagnosed with anything! When I questioned the doctor she had said, well he plays inappropriately because he did not put the baby doll into the crib. My response was, maybe he did not feel the baby was tired. So where one doc thinks that is abnormal, the parent in me says WHAT? Are you kidding?

    Flapping is a form of self soothing – that is hard to correct but you can discuss appropriate times for it (in the house, but not at daycare). When he starts doing it, engage his mind with something he likes and can be perplexing. An idle mind stims.

    Eye contact – remind him to look at you when he speaks to you or when he is spoken to. Constant reminders correct this behavior and he will learn to make and keep eye contact.

    Encourage him to socially introduce himself and ask any kid he sees their name and if they want to play. Especially at the playground. Find him a good friend from school and do a lot of playdates and intervene when he is not playing appropriately and show him appropriate play without being a nag.

    Give him lots of hugs and kisses and tell him he is perfect. Because HE IS PERFECT just the way he is.

    And most importantly – Give him time – Most of the things you described are delays that will come and go. Keep the faith. Your child sounds pretty awesome to me.

  38. Jerry Donohue Says:

    We just started a group on FaceBook:

    https://www.facebook.com/pages/Parents-Dealing-With-Pdd-Nos/294496303941810

  39. Sonia Says:

    Hi,

    I want to congratulate you about the great things that you made until now. I have a 3 years old son, Alex, who never had any delay. The only thing that he had was tiptoeing and the doctor said it is ok and there is no problem. We even saw a physical therapist. Three weeks ago, Alex had his check up and he cried so much that the pediatrician couldn’t examine him. When she asked him how old he was he didn’t reply and said something else. Apparently, he didn’t have eye contact. The pediatrician suspected and told us about developmental delay and referred us to a neurologist which is in one month. I began to look for it on the internet and exactly the same week my son began to show a lot of signs. I am not sure if it is a coincidence or something else. I saw him for the first time in his life hand flapping but not too much, closing his ears with his fingers(only once or twice), repeating the same sentences, mixting the pronouns I and you( I noticed that before but he is talking in two languages, so I thought maybe it is normal). He began to have more tantrums without reason or for little things. He ran around the same circle singing the same song. He wanted to bite objects. Also, he couldn’t get used to the daycare(one month ago) He already know his letters, numbers and shapes. He doesn’t want to wear certain clothes and sometimes cries when the noise is too strong. He wants to smell many things. He is interested in kids but I find that he doesn’t know how to socialise or to begin the conversation.I am %100 sure that he has it. I am suspecting that it is Asperger or PDD-NOS but I have to wait another month. I don’t know how I will wait. It is really very difficult to realise for us because he never had any delay:he walked when he was 15 months old, he spoke when he was 14 months old. He is having long sentences and he is very clever. I feel really scared and I am worried about my son’s future. We live in Canada. I hope I will be as strong as you are and I hope that my son will respond to therapies. Please write me what you think. Thanks in advance.

  40. Bernard Says:

    Just so you know, most parents don’t see the signs in their own child. My sister-in-law is a specialist in early child intervention and didn’t notice Eli’s problems until after he was diagnosed. All parents think their child is perfect just the way they are (which is TRUE!). There are signs that you mentioned that look like PDD-NOS and other signs that don’t look PDD-NOS. Aspergers can’t be diagnosed at 3, more like 6 or 7.

    There are things that manifest for PDD-NOS:

    Flapping or Stims
    Eye Contact
    Sensitivity to Loud Souds
    Repetitive behavior
    Abnormal play

    Best bet, get the school district involved. Get him tested and fight for services, even if the diagnosis is wrong, services just make him smarter and more capable.

  41. Sonia Says:

    Thank you for your reply. Can I ask you what are the signs that don’t look PDD-NOS ? You have so much experience. I know it is not normal that I am trying to diagnose my son by my self. It is because I have another month before screening. I noticed that the signs that he is showing are very similar to Sensory Integration Disorder. Thanks again for your help.

  42. Kecia Davis-Reams Says:

    Hi, OK I have scanned the websites for PDD-NOS help for me and my 8 year old, this family have been on a roller coaster ride since he was 4, miss diagnosis, late diagnosis, and after all that we have gone through we still can’t get proper help for my son. Nothing from school district, nothing from doctors, nothing from no one. If being alone in this journey is what he and we have to look forward too I just don’t know. We live on long island and it feels like being on an island alone.
    So, what am I looking for, medications that work, services that work, places where my son can feel excepted, and interact with peers, make friends, friends are so important. Well if nothing more, I got a chance to vent.. thanks all… Kecia, Donovan’s MOM.

  43. Bernard Says:

    Kecia,

    What school district do you live in? I am on Long Island and I have had nothing but great experiences with the state of New York policy on helping special needs kids! Please let me know where you are located so I can provide you some help. Nobody has to fight this alone and the school system should be supporting you, sometimes you have to fight to get everything you need but NY is one of the best at providing support.

  44. Bernard Says:

    Affection, willingness to play with other kids, appropriate play with toys, use of pragmatic language, giving hugs and kisses and showing affection. There are literally thousands of signs that show that a child is not on the spectrum! If you look at any development book there will be a list of things a “normal” child should be doing at any given age. The real key is seeing the things that are signs of autism.

  45. Kecia Davis-Reams Says:

    Hi Bernard, I’m in the Central Is lip School district, one would think if a child has learning disabilities the school district, physicians, and counselors, would be the first steps a parent could look too. But, what I’ve in countered has been nothing less that war! I’m beginning to assume its me who’s not understanding the correct steps I think should be taken, maybe the PDD-NOS isn’t the correct diagnosis. At this point I’m considering trying my luck in the city. But, I’m exhausted!! Here are some of the medications my 8 Year old is on, and not seem to be working, risperdol , ritalin, zoloft, he has ADHD and PDD-NOS?? He’s tested at about 62 on IQ. Test. Has 0 friends because no one can understand him, finding activities for him with peers is like needles in hay stack. So, yes.. I need help to help him. And frankly I feel lost.. for lack of better words. He gets services at school, but I am not sure his IEP is reflective of his needs nor am u sure in district schooling is best for his needs.. if you know of any resources that can put me in correct direction, would be greatly appreciated.. thanks kecia.

  46. Bernard Says:

    Kecia,

    Does your child have a diagnosis? If there is a diagnosis then you have to go to the school and get a CSE for an IEP. If there is no diagnosis, you need to get a diagnosis by getting your child tested. This is something that the school will help you arrange. If the school is refusing to help then you have to call the district and demand better placement and services. The school is REQUIRED to help you, if they fail, then the District needs to help. If you are not getting help from the district then you have to examine your approach. Below is a link to the Central Islip website for special education.

    If you are not talking to :

    Assistant Director of Special Education: Ms. Eileen Lanna
    Assistant Director of Special Education: Mrs. Kathleen Borzello
    Assistant Director of Special Education: Mrs. Renee Severe

    Then you are talking to the wrong people. I have found that if you are not getting a response from the school or district, then you need to go to their offices and camp in front of their door to make your point. Some districts try to refuse to help until the parent becomes a pain in the ass. The rule is if they offer you two hours, demand 10 and settle for 7 hours. If they offer you speech, demand OT and PT as well. If they offer you OT, demand speech and PT. Always ask for the world, and fight for it.

    If your child is not diagnosed you need to have him diagnosed. Services are only going to be rendered to kids who are diagnosed with a problem. As for the medications, I am a firm believer that medication is the last resort. If your child is on all of these drugs without a diagnosis then there is something wrong going on here. How can a doctor drug a child without diagnosing them with a problem. There are better ways of getting help.

    What are the justifications for the medicine he is on? That is some pretty serious drugs for an 8 year old.

    http://www.centralislip.k12.ny.us/m/content.cfm?subpage=808951
    CSE for IEP

  47. Dirk Says:

    Hello. I have a 2.5 year old who it has been suggested he get tested for a PDD NOS diagnoses. At just under two we started EI. It was never suggested that there was any issue with the my son but I kept thinking something was up because he seemed to not be as willing to do physical activities, he was very reserved, and scared of other children. When I suggested to our Dr. that I was worried he said the thing to do was get EI to test him. I have continually felt like the EI groups have been simply trying to get my son “in” services and that is kind off how I feel about the suggestion to get him tested for PDD NOS. Each person involved has said the same thing. Our Dr. seems to think he was relatively typical of what she sees in the normative range of children. Our social worker, who suggested the testing and other therapies, said she doubted he would qualify for the diagnoses but that it would let hem get into a special ed program at the local public grade school. The EI center group leader who is working with our son said that it really depends on how our son is doing when he is tested or how the tester reads his reactions, that it wouldn’t be a clear thing. Looking at my son play now I would not have brought any of this up. He only has to “symptoms” from what I can tell. The first thing is he has some pronoun confusion; he uses I all the time to mean himself. Especially if it is at the beginning of sentence. (Like: “I want to go to the soccer field after lunch.”) but he also uses You to mean himself, but I have noticed only at the end of a sentence, and he only rarely uses you meaning other people. (Like: “Sarah takes you? or Mom gets the book for you?” and only rarely does he say something like “You do it.” “You go over there.” He usually uses the name of the person. The second thing is he gets overexcited sometimes and flaps his arms. I am told this is a red flag but it literally is when he is excited (he jumps a bit too). He talks a lot, uses a lot of words, answers and asks questions, and describes things (but he does have a bit of a mush mouth at times). He interacts with the kids more than ever, does parallel play, some sharing, says hello and goodbye sometimes on his own (but he does clearly like to have his own space a lot of the time) and makes eye contact with people. He plays pretend with his toys and sometimes other kids (pretending to be lions or doing yard work or something) a little bit. So while still cautious we don’t have to worry about him dealing with stuff, transitions I guess, and everything seemed less of a “deal.” So, in the end every time EI suggests something I am kind off shocked. I look at my son and see a kid who seems to be behaving like all the other kids at the playground, or at least near the middle of the pack. Thank you for reading all this if you did, I guess my question is does sound right to any of the PDD NOS parents? I won’t reject a diagnoses if he gets one, but I would be lying of I said I am hoping he doesn’t, There was a time 7-18 months were I was convinced there was something going on. Now I am less convinced to the point of being skeptical. Does this sound like PDD NOS to you? What do you think?

  48. kecia Says:

    Hello,
    My son Donnie, at age 2 now that I think of it showed signs of hyper activity, he never seemed to be tired, always on the go 1 2 am still up running, existing on very little sleep, did what we seemed all the mile stones, walked at 12mons. Everything a parent book said he should,

    OK so now its pre school at 4, he couldn’t stay in his seat, wasn’t speaking in proper phrases, things never made sense, we had to always correct his speech, or tell him what are you saying we don’t understand what you mean.

    Doctors said ADHD, at 7 he was diagnosed as PDD-NOS, medications that really seem like an experiment rather than a help.

    We are still struggling to help him, reading is a disaster, he just hates it! Too much pressure I think, he’s in 3rd grade, and this is state testing year, he needs constant support with an aide to help him.. and school officials are a horror.

    He has no friends, because the general population kids don’t have the patients to understand him, with all that he goes through he’s a great kid.
    I’m just worn down.

    I wish there was more support where children curring this can get together and be themselves and parents can discuss options, support each other and just have a moment of relief !!!

    Donnie’s mom Kecia <3

  49. Cassie Says:

    Hi. My name is Cassie. I’m eighteen and a freshman in college. I’ve been trying to find sites for young adults and teens with PDD-NOS/Asperger’s to communicate, but all I can find are blogs and sites directed at parents, educators, etc. (i.e. neurotypicals) about what they can do to help us, what they can to to better understand us. But what about us? What can we do for us? Where are the websites for people on the spectrum to communicate? We have a lot to say. Just nowhere to say it. If you know of such a place, please send me a link. Thank you.

  50. Shannon Says:

    Hello,I am so lost.To start I was told my 4 year old son has pdd-nos by his Doctor,and that was it.No here is something you can do about it, or find help.What is my next step for him? I can only find blogs telling about PDD-nos.I haven’t came to terms with all of this yet.I just want the best for my son.How will mine and his life be in the future?He is in reg. Pre-school and is behind a little.He has Speech once a week though school,and still doesn’t talk clear,will his speech get clear ever? He panics if in a crowd and runs,not listening to me.He is very smart,but can’t say his abc’s or count to 10 by himself.However, can tell you what 43-3=____. and stuff like that.

  51. Fabiana Says:

    Hi Bernard, just spent a while reading the posts and would like to congratulate you on your attitude and encouragement to other parents. I actually stumbled upon your blog doing some research for our NYC CPSE administration meeting. Our son Nathan has been recently diagnosed with PDD-NOS at 3. He’s a sweet and very capable boy, and like many parents we went through denial until we found some videos of other PDD-NOS kids which brought us to tears! He has undergone all testing and we have the dreadful “fighting” meeting tomorrow. Your advice to never settle has certainly resonated wonders with us! I am wondering if you are aware of a “cap” by the school district? I come across many severe cases that receive about 20hrs a week total and it makes me wonder if this is the “max” the district can doll out.

  52. Bernard Says:

    I have heard from people that there is a cap but I always offer this advice. When I am in front of the committee of people who decide the fate of my son I tell them to put down their paper and pencils. I tell them that nothing on those sheets describe the real person who is my son and that by judging Eli against some idea of what is normal is not fair or acceptable. I tell them that if they want to spent a week with my son they are welcome to, that way they see the PERSON that he is and the Challenges he faces. I remind them that academic success can be reversed instantly by a child being labeled a social outcast and it is their responsibility to make sure my son has the best shot at long term success.

  53. Bernard Says:

    Your pre-school can help you get the ball rolling. He needs to be tested and early intervention started. He should be getting a SEIT and services in the day care environment. The earlier you start, the better. If your daycare does not know how to start the process then get your child out of that daycare and into a different one that will help. If he has the diagnosis then the services have to be started. Contact his future school and get them involved!

  54. Bernard Says:

    Cassie,

    I wish I knew of a place that fit all your requirements. Unfortunately I don’t have any advice that will help. I don’t know of any real sites for young adults who are on the spectrum to interact with each other. If you find something, please let me know and I will put a link on the website!

  55. Nicole Says:

    Hi,
    My son was diagnosed with PDD/NOS 6 months ago. He will be 2 in a few weeks. He is receiving ABA therapy 10 hours weekly, speech 1 hour 30 minutes weekly, and OT 1 hour weekly. When we started ABA Brandon did not turn to his name, or point. Now he does both. He still doesn’t talk really, but he does say a couple words if you listen closely.

    Brandon’s team has requested that we no longer allow him to watch tv or use the iPad. I don’t necessarily disagree…my problem is I have a hard time keeping him entertained. He has trouble focusing for more than a couple minutes on anything that’s not electronic. When he is bored he is climbing up things, throwing things for fun, and just being mischievous. I have plenty of age appropriate toys… But that only keeps him busy for a few minutes, even when we do it together. Does anyone have any suggestions on how to keep my unfocused baby occupied without electronic type toys? Any games? Activities? I have given him crayons..35 seconds before he puts them in his mouth(even when told no). Same with Play Duho. I sing, he likes that, for maybe 4 minutes..

    Also, I would like your opinion on another question. Brandon attends a small home setting daycare 5 days a week.he receives all his therapy at home in the evening. At first I wanted it that way so I could learn. But now I know I can increase his ABA therapy to 20 hours a week…but the school refuses to have the therapists at the school. It is a small school and having someone there would be invasive. He likes it there, they love him. I am torn between moving him to get the therapy… Or leaving him where he is happy…
    Any thoughts?

    Thanks a bunch… I really appreciate your help!!!

    Nicole

  56. Bernard Says:

    I am not sure I understand the point the therapists are making about not letting him watch TV or use the iPad. I think the key is using both as a learning tool. Eli fixates on things, and if he is watching Pokemon that morning he pretends to be a pokemon for a few hours. Is that inappropriate? I am not sure, I did it as a kid. My dad and I would watch a movie about Submarines and all I wanted to be was a submarine captain. I would suggest that getting outside (even in winter) and running around and playing is hugely beneficial. An active body is an active mind. As for the iPad….I think using an iPad is fine, but make it educational. Not just entertainment.

    My thoughts on the small home setting daycare. I am totally against it for a number of reasons. A SEIT and therapist should be able to engage a child when they are in a social school setting. Eli had to be taught how to play with others. He is now very social, but he would never have become social unless his SEIT was able to correct the issue when it happened. I strongly suggest getting your son into an integrated program.

    You say you are torn. Keeping him happy or getting him therapy. In 20 years when you look back you are going to say to yourself. If I could only have gotten him more therapy. What really is your goal, his happiness at a young age or his ability to live an active social life when he is 20. These are the hard decisions a PDD-NOS parent has to make. I would say if you could get a SEIT, get him into an integrated class, and bump up the hours of therapy then that would be the best thing for your child.

    The best thing you can do is get him the most support possible. I used to be concerned that Eli would never find love, have friends and be capable of living on his own. Now I am seeing that he will find love, he does have friends but he has a long way to go still but we give him his best shot at success. Good luck!

  57. Nicole Says:

    Thank you. I was feeling the same way about the electronics. He loves them. But then so did my older son, and at four and he has no diagnosis or delays. I always felt the electronics can be a learning tool. I am not big on taking them outside in the cold…but I can reconsider that, since I see your point.

    About the school, you are absolutely right. I felt the same way in my heart. But every time I see him hug or kiss them, I doubt myself. There is nothing to say he won’t be as happy somewhere else getting a foundation that he really needs.

    Thank you, its so nice knowing there is someone to talk to that can give me an unbiased opinion. : )
    Nicole

  58. bre Says:

    In so happy to have found your site! I have a few questions, whike at home what were some things yall did with Eli to help him improve? My son is 2yrs and 8 mo., very smart, as are all of our kids:) he was recentky diagnosed with pdd-nos as well.
    I csnt say ”I dont see it”. He does do stuff that have made me question it before.
    He is so loving and very affectionate! Never has melt downs unless he is sleepy, even his therapist says any type of meltdown he has seem to be nornal 2 yr old tantrums. He isnt violent and neverrrr hits! Good at transitions, fine in public we never have a problem with him in behavior areas. However he does hsve challenges, he is non verbal, doesnt use many gestures, other than taking you to what he wants. He has gotten better with finger pointing but mainly if he wants someyhing he pushed you to what he wants, if he wants you to open something, he puts ur hand on top of it. He does visualbstimming every now and then! That drives me crazy, he looks in the corner of his eyes! Loves kids, loves to be with them, lacks imaginary play though! He knows hoe to prrtend something

  59. bre Says:

    He knows how to pretend something is a phone just doesnt use his toys to ”battle” each other ect.
    He knows alot of what your saying he just willlll not talk!
    He has a speech therapist and a development therapist, but they didny give him an ot.
    Not sure why
    Im not putting him in preschool at the time, I just dont feel comfortable letting him while he cannot speak!
    Other than the no talking its hard to tell he has any challenges. His therapist say he has such a sweet disposition and is very open to being taught.
    We have been working with him alot at home, I have set up where his cousins and friends come over to pkay and do projects because he responds so well with kids. Its kinda like a home daycare/school. He has been improving.
    One thing ive noticed that works for him is to just stop eoing everything for him. I was actually told by the doctors that it seems as if he is to independent? And to make it where he has to rely more on me. So we have bout containers for his toys so that he has to ask for them. Ive been doing this thing where I have all his cars in one basket and lil puppy toys in one basket, and after we are done plaing with them we seperate them into thebproper basket (puppies all in one,cars all in the other) and he has caught on and is attempting more of the ”CA” saying.
    Ive been asking him to do much more on his own rather than me just doing it all for him.
    Im totally with you when you say ur son gets fixated on certwin toys but you usebitnto your advantage.
    His therapists said he is so hwppy, which I never knew that was a bad thing and kinda pissed me off that she saidbthat at first, but then she explained herself. She says most kids get motivated to do what yiu want them to in order to get a specific toy or something like that, but my son just handles it and deals with it. example: he LOVES to swing like seriously loves it, so hisbspeech therapist put him in there let him swing but would stop him and grt him to say or do hand sign for swing, he reakky didnt care when she stopped him, he got frustrated but then just dealt with the cards he was given and decided not to fly off the handle over it. Some parents would love for their kids to be this patient but its kinda hard considering you think you can get him motivated to ask for his tiy back and he will just make a new game up to entertain himself lol!

    he could babble all day long. And he uses different words together. Examplr of his babbling: ”dadada cagaba” ”gaca bada” im not sure if he is trying to put stuff together or is just babbling.
    Im ttying not to stress because my son is very smart, he aces puzzles,hard ones at that, he is very good at problem solving, hekps dress himself ect.
    But I know he needs to speak
    do you havr any ideas we could do around the house to challenge him more?
    We do fun projects( making cook stuff ect.) We talk alot, cut down TV time(not completely though) I got bubbles for ”pop” which he most certainky attempts to say in my eyes, he will say ”pa”
    We do playdoh for,learning poke and roll ect.
    I just need more input and ideas.

  60. andrea Says:

    Hi,

    I am wondering about my 7 year old son. As a toddler, he did not utter a word until he was a little over 2. He was evaluated at 16months and had extreme language delays. He received both speech and EI services. He also showed many other signs of autism such as no pointing, no clapping, no showing, very little response to people. He was seen by a developmental pediatrician at 3 years old and she said he was not on the autism spectrum based on her assessment. By 3 he had began to speak, although his articulation was terrible. He began to point, and clap. He played normally with all of his toys. He did not have any stims or repetitive behaviours. He adapted well to normal preschool. He continued to receive speech therapy. I did notice both his fine motor and gross motor still seemed delayed to me. The biggest challenge was and is his eating. He definitely has a food disorder. He will only eat pb sandwich and pizza for the most part and will try NOTHING new. His speech is now nearly normal, he has lots of friends, and is in first grade. However he still has very obvious motor delays, and still will not ever try anything new and gets hysterical at the suggestion of it. He doesn’t make great eye contact. He will shy away from me when I try to look him in the eye and he will not look at you if he is being disciplined.

    So I wonder if he may be living a pretty well adapted life but be on the spectrum in some way. All the delays and the food issues seem to fit?? He doesn’t have big meltdowns, but he does cry more than a typical 7 year old boy. I would love some suggestions or if anyone has this type of development similarities, how have you handled it. Academically he is totally normal.

    Thanks so much

  61. Carol Ann Says:

    My son has been recently diagosned with PDD-NOS and mood disorder. He has had ADHD since the age of 5. I was wondering if anyone has any comments on how to make sure you get the best IEP for your child! It’s so hard because i AM not sure of the right questions to ask or say. I am 1 overwhelmed mom who wants to make sure her son gets the best education he deserves. Thank YOU

  62. Bernard Says:

    You don’t have to ask the right questions. You have to demand the right services. Ask for everything! In the reality of the situation they should be offering you all the right services, you may just have to argue for more time spent with the specialists. Ask for twice what they offer you!

  63. Carol Ann Says:

    Thank you so much for the feedback! it’s hard not knowing where to start. But I know I am ready for the road ahead of me.I am so glad I found this website!!!!!1

  64. Jessica Says:

    Any advice on how to get my husband to accept our 5 y.o.’s recent PDDNOS diagnosis? I have known our son had some form of autism since he was about 2 1/2 and could never get my husband to agree he needed help. I kick myself for not getting help sooner. It’s hard when your not on the same page as your spouse. But, I finally made my husband attend the child psychiatrist appt. with us just so he could be on the same page as me. Apparently my husband thinks “The psychiatrist is the one with the loose screws, not our son!” He’s an awesome dad to our 2 boys, but is blowing off this diagnosis like we’re all wasting our time. He believes most autism disorders are just made up anyways. I suppose I’ve had a couple years to process that our son is different; although, the official diagnosis was still severely deflating and every bit as heartbreaking! Maybe he’s just going through a denial process……How can a man’s”denial process” be sped up and turned supportive? Thanks!

  65. Maggie Says:

    Hi. My 9 year old son was just diagnosed with PDD-NOS. He has had an IEP since first grade. He is not social aand tends to play alone. He can be aggressive at times. Mostly in the am about going to school . He says they torture him there. He also gets upset at losing any video games. He is a terrible sleeper. Gets 8 hours but goes to bed at 8pm up at 4:40am. If I have him stay up till 10pm..he is still up at 4:30pm.
    I would like to find a group for parent suppport.

  66. Maggie Says:

    At Carol..we are in the same shoes. How old is your son?

  67. Georgia Says:

    Thank you so much for your website.We just received the pdd-nos diagnosis for our 4 year old granddaughter yesterday. She has delayed speech and didn’t walk until she was 18 months. We always knew something was wrong but the pediatrician (more than one) kept telling us that nothing was wrong, all children develop at a different rate. I finally pushed to see a developmental pediatrician and we received the diagnosis. She is very loving, sweet and happy child. She was very easily potty trained. She is very patient with her younger brother and sister (my daughter is pregnant now) most of the time. She is very patient and loving with my daughter’s Akita and with my Labrador. We are going to start looking for programs in our area (Oklahoma). The pediatrician gave my daughter some agencies to call. I suppose we are still somewhat in denial (I know this is probably normal). What can we do at home to help her without her losing without her getting frustrated and without her losing who she is -very independent, confident and sweet child? Thank you for all you help.

  68. aiw Says:

    Thanks for sharing your experiences. My son was diagnosed with PPD NOS at 5 because his kindergarten teacher was frustrated with him for behavioral issues and ADHD like behaviors. He was not able to finish work on time at school or at home. However like quite a few kids with his diagnosis, he is intelligent and has academic learning ability above average. Through his neurologist, we found out that he has pragmatic language problem, organization issues, behavior inflexibilities, no concept of others’ need for private space and exhibit atypical play. He is generally a happy kid but he can be quite un-engaging if he is not interested in the activities and can be quite obnoxious intentionally or unintentionally. His temper tantrums can be quite sever and he has some difficulty getting along with his siblings at home. At this point, his relationship with my husband was very difficult since we didn’t know anything about Autism Spectrum Disorder. He started received speech and language services twice a week for 30 minutes each session in kindergarten and had additional social skill group after school in 1st grade but still total to 60 min per week. In second grade, besides speech and social group, he got some help for writing organization. My husband had found out about Quest Therapeutic Camp and sent him there for 2 summers from kindergarten to 2nd grade. Since he is generally a happy kid and the camp counselors had to deal with kids that need more help, he was well liked in the camp. He is now 8 and in 3rd grade. This past summer due to having oversea kid relatives coming for vacation, he and my older son stayed at my parents house with the relatives. He had lots of temper tantrums and fights with my older son and his grandparents whom didn’t have the experience of dealing with him. The summer was not routine and he just couldn’t handle it. However, starting this new school year, we have a real pleasant surprise because all of sudden he is doing extremely well in school. He is on task at school work and at home work. He does have friends and seems to play and work fine with others at school. However, he is still very much a scatter brain at home, exhibit atypical behaviors like flapping and other weird things, resentful to his younger sister, does not respect his older brother’s private space. We also put him in the Spirit League which is a great sports league started for kids on the spectrum. He is doing very well there too. With all these improvements, we are happy but we know he still need help. Yesterday we got the triennial assessment from school and they indicated that he has improved so much that he doesn’t need services despite the fact that he still score in the 5th percentile for pragmatic judgment and inconsistent in multiple interpretation of social language. If he were a shy kid, we might not have to worry as much but he is not. He likes attention and sometimes he doesn’t to understand that the attentions that he gets for obnoxious behaviors doesn’t necessary mean that he is liked. We feel like that he is about to fall through the cracks because of all the budget cuts. But I am also not sure that the schools, which are historically driven by academic learning, have the ability to teach social learning cognitively for kids like my son who seems to be “normal” most of the time.
    Please give me some of your thoughts because I am not sure how to request for more help through school.
    Thanks!

  69. Paula Says:

    My sone is 21 months and is speech delayed, however he is from a bilingual home and his older brother was speech delayed. We recently went through the Early Intervention Evaluations and a psychologist told me he was PDD…Now I have to say, it was not a child friendly environment and she made me wait 1 hour to be seen. He was exhausted and of course did not want to play with her. He has good eye contact, he follows directions but he does tantrum when he doesnt get what he wants and I suspect its because of the speech delay. My older son was very much the same and got speech therapy but never ABA services….what should I think, what are other signs, or is it a quick judgement by the psychiatrist?

  70. Bernard Says:

    Sounds like quick judgement to me. But I ask you. Does your son play appropriately with toys? Does he shy away from social situations, does he stim (arms flapping, repetitive body motions)? All kids have tantrums, and all kids start talking at different times. The question is this: Who cares about the diagnosis at this point. Get him the services because it can only help. Would you rather be wrong and have sacrificed the opportunity to get help? Therapy only makes your child stronger, in a year have him re-evaluated and see what comes of it. Or wait a few years. Get as much therapy as you can because it is only going to help, PDD-NOS, Aspergers or nothing at all, therapy will never hurt.

  71. Samantha Says:

    My 6 year old daughter has recently been diagnosed as possibly having PDD-NOS. She is very bright (speech has always been above average), social, very sensitive to other’s feelings, and not agressive. She does seems to have meltdowns (not violent, just loud crying and anger) with some changes to what she thinks will happen and tends to try to run the show at school if the teacher steers off the normal course. She is also a very anxious child who tends to worry alot about things that may be important or trivial. She has also always had stomach issues and sleep problems (constant waking and frequent night terrors). I am wondering if this diagnosis is accurate or if I should question this.

  72. Bernard Says:

    I am not sure that this is PDD-NOS or one of the disorders on the spectrum. I would highly suggest getting more opinions. I am not sure I have ever met a six year old girl that does not try to run the show or throw tantrums. Especially if she is a little princess. Something does not right right in my head.

  73. Samantha Says:

    That is what I was thinking. On the anxiety scale she scored a 37, with 0 – 25 being normal. This I seemed to trust a bit more as I have always thought she is much more anxious and fearful than a child should be. However, I started to feel as though he was diagnosing every behavior she has. I will definitely continue to question the issue.

  74. Bernard Says:

    Anxiety scale? Who determines what is normal when it comes to anxiety. This is one of those things that I fear is not an accurate measure of spectrum “worthiness”. Eli was a total chicken, feared everything and was anxious about everything. Now he rides the biggest coasters at all the parks without a spark of anxiety, but there are times he won’t even consider trying a new food. I don’t think that is abnormal.

    Doctors and school systems are quick to judge kids as Autistic. Trust your instincts as long as they are not clouded by pride. If she is talking with her friends, socializing, smart, does not shy away from social situations, flap her arms or play inappropriately with toys then you are missing some of the signs. Having one or two, is not a diagnosis. Good luck!

  75. Stephanie Says:

    Just wanted to introduce myself. My hubby was diagnosed with PDD-NOS 8 years ago, just after our 10th anniversary. We have four kids. The youngest has severe autism (age 9) and the two older boys ages 12 and 13 both have PDD-NOS. our oldest and only daughter was just diagnosed with PDD last fall at age 17. I guess I’m still in shock because I don’t know what else to say. :) It’s just difficult and lonely. And I’m not sure how to parent teens with PDD because developmentally, they are all over the place.

  76. Bernard Says:

    Stephanie,

    You have one of the most confusing scenarios I have ever read about. To have all of your family members diagnosed so late and all with the same disorder is shocking. Usually PDD-NOS gets re-diagnosed with something else on the spectrum as the person grows up, but to have everyone get diagnosed is really odd. At what age was every diagnosed? I can only think there is something environmental going on here. I am not saying the diagnosis was wrong, but the scenario is just hard to swallow. Where do you live? Did the same doctor diagnose everyone?

  77. Jennifer Says:

    Apparently the Autism Spectrum is being narrowed. My PDD-NOS son will no longer be considered ASD, but instead OHI (Other Health Impaired). And apparently this will be effective in May of this year. You should all keep up with this, as it will most certainly impact how many of our children receive services, and whether or not they will even qualify.

    http://www.dsm5.org/Pages/Default.aspx

  78. Rick Says:

    Hi, I found a lot of info on this site but I do have some questions. My son was dx with pdd nos at 28 months in Jan this year. We took to diagnosis since his speech was delayed, we did not see any other symptoms that we were concerned at that point. He does not seem to have any behavioral issues other than he still prefers to play alone but will join play with other kids if we push him and the other kid also shows interest. He also had a lot of interest in numbers and alphabets (knew numbers 1-20 and alphabets by 18months). He is a quick learner, imitates easily, can take directions (not the complex ones though). He is not too fussy about eating, makes excellent eye contact with us. His main problem is that of speech delay (knows like 100 words, uses spontaneously about 50 and can join 2 words at a time for about 10 scenarios) .We are seeking services but there is so much back-log in California that we have to wait for 3 to 4 months to get those services. His insurance has recommended ABA and OT but have denied speech therapy that was very surprising for us. So we are getting private speech therapy ourselves. Is there anything we can do about the denial of service ? Has anyone come across this problem with insurance?

  79. Rich Says:

    To all the parents with loved ones in the PDD-NOS world, best piece of advice is to give what your child needs most but doesn’t know how to ask – patience.

    My 2yr old was diagnosed with pdd.. not making eye contact, not speaking, no social skills, did not initiate any communication .. very, very, very aggressive (tries to rip hair or heads of other kids).
    Very frustrating to see, embarrassing when he played with cousins or friends during play dates…and saddening when a peer in day care walks up to me and tells me not to talk to him because he doesn’t understand

    That’s because he didnt have any words to express himself with.. yelling at him, punishing him or not letting him learn his own way didn’t help any..persistence and patients did work. Tell you the truth taking 4months off from work going to the beach or amusement park getting him to say he’s hungry or scared, as well as the ABA hes enrolled in now are the best thing that’s ever happened to him.

    Speech alone may not be able to teach your child how to express his feelings or needs, or empathize in social environment. So take all the services they offer, do not hesitate. (My hesitation and pride almost cost my son his services)..

    If you want to know what symptoms and how we got to 500 words in less then 1 yr read on

    Prior to the diagnosis we began ei with just speech.. (speech therapy was 1 day a week for 1 hr @ day care, but the lady doing the therapy would show up @ 9:15 and leave at 9:45). After 7+ months he could not say more then 10 words and all he wanted was to sign language? I thought she was to teach him how to speak not how to sign so truly no one in his class understands him.. i felt like i am failing him for standing by and not giving the environment he needs to mentally stimulate growth .i would sit in during the speech session and think to my self (she isnt working with the words he knows, hes not working with the word shes saying, and he is slapping the therapist because he cant say hes hungry, i told her on many occasions what his temper flares are caused by yet she failed to comprehend, she would rather walk away for the week then to understand what his physical actions mean).. I asked for a new therapist, and asked her to work with a vocabulary he knows and use the list i made as stepping stones.
    .(Here is where the patience comes in to play)I took the summer off from work, to spend time with my boy. (If some of you say you cant, then you are choosing your life style over your childs well being)harsh as it may sound i would rather crash and burn financially then to miss the opportunity, at his age, to have some sort of assemblance of a mediocre life .
    Using the 10 words as building block, and extreme amounts of tolerance i began to pick up the parts of the puzzle that speech therapy couldn’t. going for walks and learning the sounds crickets make, or beach time going in to cold ocean.. basic sensory words is what i was pushing him to learn trying to make it fun.
    Eureka! Hungry, hot(HA), cold(ko), scared, water(wawa), and bird (dird).. All new words, and they stuck. Now he finds learning fun. Again this took over 4 months and lots of direct attention to details and patience to all of his out bursts..

    Time for the psych visit..
    First reactions to the psychologist was what does that mean? How long will he have the label? What are the chances for a normal life? She couldn’t tell me anything she said.. other than he has pdd-nos.. went home burning up with anger and fear. Fighting the idea i as a parent dropped the ball somewhere.
    The recommendations were aba and speech? No other languages at the house just english.. Again.. pride and anger had to subside, and let the pros do what they do best.. if he did not get that label he would not get the help he needs, take it as a back handed compliment that your child has been given the diagnosis
    and needs help.

    We were fortunate with the aba therapist, she worked with me and visa versa..
    I told her to stop all sign language lets focus on english (priority is to get him to speak the same language as everyone in his class)
    Now my son is 3
    He is on his way, no more anger issues, and has his words as weapons, and keeps his bruit strength to him self..
    This will be a life time process so no all is not perfect, but i can at least sleep at night.
    O btw, the kid that told me not to speak to my son is one of his good buddies now..

  80. Erica Says:

    Oh yes, we have come across that problem with insurance. My son was diagnosed with pdd nos at age 7. He had always had a history of delays. In Massachusetts we have Early Intervention (goes up to age 3), which is free and provided by the state. I thought all states had that, which would provide you with speech for your son, as well as pt and ot and other services if needed. There is a law in Mass. that states that anyone with a diagnosis of autism cannot be denied coverage by insurance. We are not the only state that has that law. Was insurance denied because your policy doesn’t cover it? Sometimes it comes down to billing codes and a matter of medical necessity. What we did was call back repeatedly and check the policy ourselves. There is always a way. Where we live, once our son was 3, he could have gone to a public preschool, which would have offered him all those services in the school system. You could always turn to your local school system and see what they offer, too. Hope that helps. Happy to answer any more questions. Good luck.

  81. Don Clark Says:

    Hello and thank you for having this site. My son turned 6 in Dec of last year. He has been diagnosed with PDD NOS. I have been an emotional wreck, not because of any of his defficiences, but because my son LOVES people and wants to be independent. I got pretty demoralized by reading so many of these blogs that tell you that you are pretty much doomed to failure. I love him for who he is and whoever he turns out to be, But I cannot accept that I cannot do more and have an outcome like you describe. From this point on my own life will be defined by the quality of my sons – and that is measured by his happiness. Please contact me and tell me what you did. I prefer a phone call so I can ask follow-up questions, etc if you don’t mind and I will provide my phone number upon response. I am so glad you do this. You have no idea how much of a difference you are proabably making in the lives of so many people and I thank God their are people out there who share their experiences and care about those beyond their own circle. Don

  82. Bernard Says:

    Don,

    You can email me at Bernard@raisingeli.com. No need to share your contact information with the entire blogosphere. That goes for anyone who wants to contact me directly, you can send email to either bernard@raisingeli.com or bernardhny@gmail.com.

  83. Tracy Says:

    I am so glad I found your site! My son just turned 5 years old. He was diagnosed with PDDNOS at 3 1/2 years. We were completely shocked. I asked our doctor if I should have him evaluated because I thought he might have a slight language delay and he didn’t turn and look when I called his name on the first try. The Doctor said he was not concerned, so we waited. Finally, after his 3rd birthday, I was concerned about eye contact and possible social interaction issues so I had him evaluated. He got diagnosis of PDDNOS. We were shocked and in denial for a little bit. That did not deter us from fighting to get services though. But we have kept it a secret. We have told no one. I am so scared of the label and what others might say to my older (7 yr old) neurotypical son. I don’t want big brother to think any differently about his little brother. They have the most amazing relationship. I have researched every kind of therapy you can imagine. That’s part of the problem. What is best? ABA/VBA-NET? RDI? one on one? group? with typical peers or not? these are questions we have been trying to answer. My son goes to a pre-k program in a typical preschool (without an aid) 3 days a week 9am-1pm. He also goes to speech 3 days a week and OT 2 days a week. He was going to an ABA/VBA clinic getting VBA in the NET natural environment for additional 15 hours a week. We recently pulled out of the center. They just did not program to his needs. I have had the hardest time finding any place that will offer one-to-one therapy that is not memorizing and heavily prompted. I want to teach my son “how to think” and work on advanced skills and social interaction. The ABA programs I’ve seen teach “skills” but they don’t teach my son “how to think and how to learn”. Then I look into RDI and Sonrise and these programs seem amazing, and I agree with the concept, but how the heck do you teach it? I have read all the materials and I still don’t know what I’m supposed to do to teach him in those methods. I also love the Michelle Garcia Winner Social Thinking concepts. My son is very verbal, communicates his needs well, can have a conversation (on a topic preferred by him) but struggles when it’s not something he is interested in. He is wiggly and has some sensory issues and loves to be silly :). He likes other kids but he is content to build legos by himself and do independent activities. He really likes his older brother’s best friend (8 year old). With kids his own age (new 5 year old), he likes to play near & with them, but it’s not true interaction most of the time. I am killing myself trying to create multi-faceted programming at home now because I have been unsatisfied with the options available at the centers. Do you have an opinion on therapy style for a high functioning PDDNOS 5 year old who has some cognitive and social delays, but presents pretty typically?

  84. Rick Says:

    Erica, Finally the insurance approved speech therapy, they had denied earlier saying he is better than 50%, so well worth all the followups and perseverance.

  85. Erica Says:

    Rick, So happy to hear that……and absolutely worth all the perseverance. Speech made a trememdous difference for both of my sons’.

  86. Rick Says:

    Hi All,

    I would like to know if any of the kids with pdd nos actually grow out of it. I am asking this since my son has lot of changes within a span of 2 months (he is 2.5 now). All that we did is talk more to him and keep him engaged with us all the time. (his OT, ABA has not yet started but he is taking SP from like 5 weeks).

    What changes we see is that he has started pointing a lot, requests items he wants using words (combines words although it had to be thought), he is very social with us and those who visit us. His repetitive and stimming has reduced and even kids who are out of spectrum also stim , so dont know if its a big concern (His stim is mainly jumping). But he does have speech delays compared to other kids of same age. Also he still walks on toes some time and does have difficulty in a group (like in his gym when there are too many sensory inputs he tends to tune out) . But he does have strengths that other kids same age does not have like he knows all letters, numbers, can count objects, read 3 letter words , knows colors, shapes etc, can write few numbers and alphabets, quick learner (need to be thought only once).

    So I was wondering if anyone have experienced very quick progress in their child and do they eventually move out of spectrum.

  87. Bernard Says:

    Rick,

    Remember that PDD-NOS is a development disorder that emerges in delays. A non PDD-NOS kid might do something at 2 that a PDD-NOS child might do at 2.5. It is the developmental delay that brings on the diagnosis. Eli was first diagnosed and since getting therapy and support has outgrown a lot of the issues associated with PDD-NOS but has gained new ones. He is no longer PDD-NOS (that term does not even exist anymore) but was re-diagnosed with Aspergers (which does not exist anymore as a classification). The point is, with time, love and therapy your child can outgrow many of the symptoms of PDD-NOS. Eli is a million times better than he was before therapy but still has his issues. These issues will be with him his entire life, but a lot of the issues that were troublesome behaviorally are not there anymore. They key is to keep pushing the services as long as you can and as often as you can.

  88. Rick Says:

    Hi Bernard,

    I agree with you, I believe its important to get all the services and keep trying to get them as much as possible. What I am concerned is when you say “gained new ones” , since most normal kids also have issues from time to time. So I really dont know what to think of pdd nos other than just assume that any of his delays may be due to pdd nos and take services (which is I think right thing to do given his diagnosis)

  89. Rick Says:

    Tracy, its strange but when I look at my 2.5 year son, I just feel the same way as your son. He presents himself very typically, no one ever guesses he has any problems , he is so sweet. They just think he talks less and it is his personality. Even now I can see that ABA might not work with him beyond a certain extent since he is very good a repeating what is instructed and applying in exact same scenarios later. But it seems like he never does anything on his own.

    The problem is how to teach him to learn on his own, ask questions , be inquisitive like other kids, empathize , implicit social skills etc. I think those may be more challenging for us to teach than get him to communicate his needs or reply to questions.

    Have any of parents had experience with ABA where they teach such skills?

  90. Stacie Says:

    In response to Rick…
    My son was diagnosed at 3 and is now 7. When he was diagnosed the Developmental team told us he may someday appear without “symptoms” so to speak – but to keep our services through the school and stay with anything therapy wise we can.
    The progress he made early on sounds a ton like what your seeing in your son. Mine is also a very fast learner but he did have to be taught to use language. His letters, numbers, academics continue to come quickly and he has never academically been below “normal”.
    He was and still can be sensitive to sensory stimulus in groups and strange settings. The sensory issues were always and still are his biggest challenge – especially with school.

    Much like Bernard we did see “symptoms” go but they were replaced with other things. We’re now on all consultative services on his IEP because he’s doing so well at school.

    Anyways…don’t focus on the diagnosis being there – it’s tough and now one wants their kid to struggle but – the services you can get can do nothing but help – so take anything you can get!!! He’ll only continue to soar and you get the pleasure of being a part of it and learning a lot of awesome stuff with your child and the therapists you work with.
    Best wishes!!

  91. Rick Says:

    Hi Stacie, thanks a lot for sharing your experience, last few months has been mentally and emotionally challenging for us. Indeed this has changed our lives but we are beginning to comprehend what this is and how we need to work on it.

  92. Rick Says:

    Thanks Stacie, I was wondering what are the symptoms that come as they grow, I know it can be different for different kid but was just wondering what we are upto.

  93. John Says:

    So my son received a diagnosis of PDD NOS. Frankly I was surprised and not surprised at the same time. His strongest indicator is the arm flap, or at least the most visible. The report indicated poor non verbal communication and not enough eye contact. On the flop side he is high on the intelligence and verbal scales. At this point I have only one question. Everyone keeps saying “he’ll be fine.” Our pediatrician, the EI people, and the specialist doctor who diagnosed. When I pressed the pediatrician she said that when she meets him he acts like most of the children she meets. When I asked EI she said just repeated that he would do fine and be ok in school. When I asked the specialist what he meant he said “If you did nothing he would probably be fine. The goal here is to prepare his chances for success in kindergarten.” Is the normal response, is my son in a good place as far as this goes? At this point I feel like all these people have been dodging this for a year and none of them want to give bad news.

  94. Maggie Says:

    My son is 9 and was recently diag with PDD. Its been hard. The only time he has a meltdown is when he loses in a video game. He throws the controller..slams the door and cries (very agry). It will last about 10 15 min.
    I try to explain to him that losing is ok. He get angrier. I am wondering when he is having this meltdown…shoudl I just ignore it? Talk about it later in the day when he is ready to listen? When I try to calm him..he gets madder and blames me. He tells me its all my fault and hates me.
    Who do I reach out to get coping skills? Is that what it is called? I am in CT..but orginally Long Island (Ronk).

  95. Bernard Says:

    We face this all of the time. The key for us is to tell him to step away and that games like the one he is playing is not supposed to be easy. We encourage him to take a break, do something else and realize that there is nothing wrong with being disappointed with not winning, but there is something with being a bad sport about losing. If he continues, we simply stop him from playing and then talk to him about it later. We use the phrase, you get what you get and you don’t get upset and we remind him of that all the time.

    When it gets really bad I remind him that having games is a privilege and that when he gets over emotional about the game he is not earning playing time. I tell him to stop before he gets himself in a position that he will not be allowed to play.

  96. Stacie Says:

    Rick,
    As my son grew he has gone through phases where he obsesses over certain topics. First Thomas, then Cars, now video games…I have to remind myself when I get annoyed that eventually the obsession will end ;). When I say obsession it isn’t a paralyzing fixation but a BIG preference. He’ll want to talk about his current favorite a lot and struggles to realize when others have heard ENOUGH.
    He had quite a bit of verbal repetition of things he heard (usually on TV) when he was young but that’s gone. He didn’t ever have much of a physical stim – a little flapping when upset when he was very young and he used to squint at the lights – both gone.
    So many other things were the same things you would experience with a “typical” kid but more extreme because it was tougher for him to work through things when he was revved up on emotions. So…tantrums and arguing took longer to get over. They still do sometimes.
    Right now he does do some verbal noises and talk to himself here and there at school when it’s quiet…we never see this at home. He also struggles emotionally when it comes time to apologize. He doesn’t always like to take blame for when he spirals out of control and likes to blame us.
    It is not easy having a PDD kid – but being a parent is never easy. I have a “typical” daughter who has a whole other set of challenges for us.
    You’re here and pouring through information elsewhere I’m sure – that means you will find the tools and help your son be successful. An important thing is how GREAT you feel when you pass a hurdle and have a success or look back and realize you don’t have to deal with something that was once a problem because you and your child have progressed past it.

  97. Maggie Says:

    Staci

    Reading you post sounds like you are speaking about my son,
    From Thomas to video gsmes. My son is 9 now.
    I would love to chat with you.
    My email is: margareto@ymail.com

  98. Tracy Says:

    Rick,
    Thank you for your response to my post. It has been difficult trying to find the right mix of services for my now 5 year old son. We started at 3 years old. Everyone says the ABA/Verbal Behavior is the only evidenced based approach, so we tried it for a year and a half. Although, I was there every day and made sure that they were not doing table instruction and really focusing on building the programs into motivating activities the NET (natural environment). I think the Verbal Behavior NET therapy was good at getting him to develop a lot of language skills – i.e., describing things, answering “wh” questions, inferencing, predicting, etc. but the ABA/VBA program was very weak in building ability in the areas of joint attention, social referencing, eye contact, conversation skills and social/relationship skills. It did not teach him how to be flexible or think on his own. That’s what I am struggling with. So, we are looking into RDI (Relationship Development Intervention) which seems to address these areas. Has anyone on this site done RDI or Sonrise programs? Do you have opinions regarding those types of therapies? I think we have maxed out the capabilities of an ABA program. Does anyone have thoughts on this?
    Also, Rick, regarding “growing out of it”. If your son truly has a PDD, the first P stands for Pervasive – which means he will have challenges throughout his life, not temporarily. As you get him therapy, he will build skills to deal with the challenges, and they will become less of an obstacle. But I am realizing, in our case, my son presents pretty typically, but as he gets older, some of the subtle things are becoming more obvious and the difference between he and his peers is becoming more noticeable. He is still a wonderful boy, but I am worried about the unpredictability of his future. Some days I think he will be great, independent, etc. Other days, I realize he has real challenges that will be difficult to navigate through life with. So, my reco is to get your son as much Therapy as possible for as long as possible. Speech Therapy is a favorite of mine because no matter how high functioning, there are always great things to work on in speech, like pragmatic language and social stuff. We get about 15 hours of therapy a week right now plus preschool. At times it feels like too much, but I think it will pay off in the end. Good luck to you!

  99. Stacie Says:

    Maggie,
    I’m shooting you an email so you’ll have my email address.
    -Stacie

  100. Larbor Says:

    Conflicted…

    My son doesn’t have a diagnosis of anything as of yet, sort of. He just turned 3. Not talking conversationally. Has probably said around 100+ words but many were one offs that came from Sesame Street (e.g. “word of the day”). He may say it once. He identifies a lot of things when he recognizes them – counts to 20, knows abc’s (mostly). sings a few songs (row row, old mc donald – though they are tough to understand).

    But he doesn’t say hi when people say it to him. He just looks at them. Sometimes he says bye – maybe 1/4 times. sometimes he says it when he can tell i’m getting ready to leave. He can understand more than he can say, we can tell him to do a lot of things but i wouldn’t say he listens.

    He’s been in day care since he was 3 months. The day care folks say he listens more to them. around 2.5 his ped said he should get him evaluated because of the speech delay and we went though the state, which was pain. they sent two 22 yr old girls (fresh out of college) to my house for two assessments and he didn’t do good on the main one because he had no interest in the girl or her bag of toys. so he eventually got speech therapy. and we had his earring evaluated and found he had fluid and it was likely ongoing for probably a good while (he had a lot of ear infections). so we got tubes in oct for him.

    since the tubes he has gotten better, but not night and day. word count is up, but day care says he is much better (unsolicited comments for what its worth). they say he listens now, plays with others more, basically is just like the rest of the kids.

    we also started him at special needs pre school (last week). the state’s eval combined the 22 yr old girls notes with their own 30 min assessment, which he had moderate delays in communication and fine motor skills. he runs to the bus to go school (they pick him up at daycare). this blew us away, he was scared the first day, from then on he loves it.

    At his 3 year visit his ped said he thought he had autism and we should get it checked out. Based on speech delay and the fact my wife said he was shy at day care (which again, he was – not debilitating, but more shy than the others – but seems to be much better now after the ear tubes.

    We are going to get him evaluated by a hospital. I am scared because it seems from my research the diagnosis of PDD or autism is “rubber stamped” a lot these days.

    He doesn’t have sensory issues, doesn’t care about routines, will eat anything, makes eye contact. He walked, rolled over, etc on time without issue. He isn’t potty trained but seems to go hide when he has to #2, and we have him in pull ups. He doesn’t have any more tantrums than I would think most 3 yr olds would have. mostly he freaks if the dogs take his food, but even then it’s done in 1-2 minutes. Luckily i’ve never had to deal with a 30 minute meltdown.

    But while his speech is better since the tubes, he’s 3 and i expected him to be much better. He’s still somewhat shy but we can take him in public just fine. He does seem hyper in that he wants to run around where ever we go and “explore” but we can take him to stores, etc. We don’t go to restaurants much because after he eats, he won’t sit in the booth/chair – he wants to run around. Also, for what it’s worth he’s flown often (4+ hours) and seems to be ok with it, as long as we have the ipad constantly playing a show he likes.

    I’ve looked all over and i can’t see someone with a kid like him (yes i know two kids are not alike, but you know what i mean). i can’t tell what i need to be looking for or asking about. His speech delay does seem to be more of a communication delay, but i am encouraged by the improvement post ear tubes – although it’s not where we had hoped.

    sorry for the war and peace, just wondering what you all thought of our situation (for lack of a better word) and interested in any advice/feedback.

  101. Rick Says:

    Hi Larbor,

    My son is 2.5 now and it seems like he is a lot like your son. When they evaluated him, his social skills were above average but due to his language delays and mainly a little intense interests in numbers and alphabets (in the sense they do not expect a child to know alphabets and numbers at young age ,my son knew a lot by 18 months itself) they gave him diagnosis of pdd nos. My son also does not have much tantrums, we feel like he has sensory issues since he is not that social in a group but that is getting better as we expose him more. The only stimming he has is that he walks on toes but not always. He does say bye, good night combines some 2 words like want phone, pick up , answers to yes\no questions but this came with a little help. In the sense most kids pick such things naturally but my son had to be taught. So we are working everyday to expand his verbal skills. He also understands complex sentences like “go pick up something and drop it in box”. He is also fine outside like in restaurants etc, no issues at all.

    But you know I can still say he is slightly different from other kids in the sense like he still does not identify objects as “mine” or “yours”, I think he has some delays in integrating words\thoughts together.

    One thing I can tell you is that you should not be scared of the diagnosis, I really dont care about the labels they would give, it keeps changing all the time anyways and I also don’t believe when they say that he is going to have challenges through out his life since I do consider that its more of personality than anything else. And a lot of these kids have special skills that they are great as engineers, doctors etc and can be really successful in their life\careers. But the diagnosis does help to get the help\services to work on their weaknesses.

  102. Rick Says:

    Question to all

    I see a lot on internet about Gluten and Caesin free diet, I dont know what to believe on that, do any of you tried Gluten\Caesin free diet and did it make any difference on kid at all?

  103. Bernard Says:

    I am lucky to get Eli to eat three meals a day much less control the items on his plate. If I did that he would waste away to nothing.

  104. Larbor Says:

    Rick – thanks for your reply

    I should clarify, I’m not scared of the diagnosis so much as I am scared of the *wrong* diagnosis. I talked with his ST today and she’s seen him about 9 times over the course of 3 months. I asked straight out if she thought he was autistic and she said she didn’t see it, and she works with 90% kids on the spectrum (her case load). So she should know it when she sees it, more than most at least. Her words were that he “just seems like a delayed kid”.

    I took that as good, and still confusing. The doctor who made the call made it on only a little information (the speech delay and my wife saying he was shy at day care) but I still know he’s challenged. I think the pre k is/will help and I am going to get him more ST as well.

    My concern is that I see and read a lot of posts that seem to point to a rubber stamp diagnosis and given that this is a crucial time (he just turned 3) I do not want to waste any time going down a treatment path that is not best suited for him.

    When we got his ear tubes in the ENT doc said his ear was “sucked in” and it moved from side to side. For all we know, he was hearing muffled talk for well over a year. His ped never noticed it – even right before we took him to the ENT when he saw the issue. So I am left wondering if he had a lost year (or more) when he couldn’t hear well. I think part of that is the case.

    Anyway though, I can’t seem to find much else to ask about. It seems that if there is a delay these days kids are marked with autism or PDD-NOS and little else (ruling out genetic-caused delays). Are there other things I should be asking about? When I look at his issues it almost always goes back to communication – I am almost trying to find other red flags and I can’t for autism as that may explain things more to me. I can’t think of a sensory issue. Eye contact is fine. Doesn’t stim. Doesn’t have large scale melt downs. Couldn’t care less about routines/food. I would say he is shy but even that evaporates in a matter of a few minutes. He doesn’t point much but he does use the ipad on occasion and points at that (as you have to).

    We’re going to dig deeper but I want to know I’m asking the right questions of the docs, that’s all. Thanks for the feedback – I’d appreciate any more if others have it.

  105. Tracy Says:

    In Response to Rick’s Question,
    I have seen the GFCF (gluten free caesin free) diet work wonders for some kids and do nothing at all for others. My son is 5, pretty high functioning, and we still have not tried the diet because it is so drastic – I don’t know what he would eat. My son is a very picky eater and sensitive to textures etc. A big party of GFCF diet is meat and vegetables, 2 things my son does not eat much of :(. I have seen lots of kids on the spectrum do this diet, and my casual observation is that it has worked really well for kids who seemed “sick” before trying the diet. What I mean by that is they had big bloated bellies, diarrhea, dark circles under the eyes, etc. My son didn’t have the symptoms so I’m skeptical about the effectiveness for him. Caveat – we have never tried it. I wish I could muster up the strength to try it for 8 weeks, but it seems so daunting. The center we used to attend is GFCF and some of the parents swear by it, albeit I see lots of behaviors and challenges in their kids still when on the diet. We saw a DAN doctor and they promote it as well – he recommends trying it for minimum 6-8 weeks with not a drop of gluten or casein or you have to start over. Keep us posted on how it goes if you try it. Does your child present with gasterointestinal (sp?) problems currently?

  106. Tracy Says:

    We are struggling with the limited amount of hours in the day and all the various therapies. Speech, OT, Early Childhood Special Education via school district, Typical Preschool, private ABA or RDI therapy – each multiple times a week. Anyone have thoughts on RDI or Developmental model approaches for 5 year old, verbal high functioning child? He is a wonderful little boy but he struggles with the joint attention, referencing, social/relationship skills. Has anyone here done anything besides ABA? Just wondering if you could share your experience and I can learn from you. Right now, there is no center in our area that offers one-to-one therapy using a developmental style. So, I’m having to startup my own program and it is daunting. Please share thoughts – looking for guidance to help prioritize the limited hours in the day. Wondering if I should pull him out of preschool and just do therapy? ugh.

  107. Rick Says:

    Larbor,

    I understand what you mean, my wife also has same concern. Even with my son, according to us, language and communication are the only delays. When they evaluate , they check perceptive ,expressive language delays and non- verbal deficits. And we knew our son had mainly language delays so even now we dont believe he has pdd-nos which is a form of autism. When we asked they said typically kids with only language delays will try hard to talk and express (verbally and non verbally) but my son does not try that much.

    pdd-nos is like a catch all, if they dont see classic autism, but do see some of the symptoms , they say pdd-nos. But certainly there are kids who have only language delays and I believe they should not be classified as pdd-nos.

  108. Rick Says:

    Hi Tracy,

    My son does not seem to have problem with diarrhea or other GI issues, we tried with gluten free diet for 3 weeks, dont know if it made a difference, we had to stop since we could not keep up with it. But his language is getting better day by day now and also when he was on gluten free diet, so guess its mainly because we spend so much more time with him now.

    Also I had a general question to everyone, when do we expect children to know about what has happen in the past and answer questions like “How was school” or remember their friends name or the time they spent together, or remember that we went to park and show interest when we say “lets go to park”? My son is 2.5 and he does not seem to have such associations made yet, though we have not yet had too much of regular routine that he can remember.

  109. John Says:

    Diagnosis are indeed subjective unless they are sever, it seems to me. My son, who is 3, was involved with EI for almost a year before they even suggested he was on the spectrum. We got involved with EI because I was concerned that he A) flapped his hands when he was excited, B) just seemed anxious about things especially other kids. They said neither of those were issues, he was normative in gross motor and social, but that he had fine motor issues. Just when he was about to lose services at 3 they suggested we have an eval done by a specialist and he received PDD NOS as a result. He got it because of the arm flap (which he almost didn’t do while we were there, another 15 minutes and they wouldn’t have seen it!) and non verbal communication/eye contact. Thing is what if he didn’t flap his arms that day, some days he doesn’t at all, he always talks and answers questions, and asks them, but he didn’t really interact with the staff as much as he does with us or people he knows. He’s actually started literally talking to other kids this month too. “Can I have that?” typically. I guess what I am saying is that I feel, and others have expressed to me, that at the so called “mild” end of PDD it is a guessing game. I had one Father of a child I recently met tell me that he had 5 evals done and they all came out different. One day his boy was “normative” and 3 weeks later it was Asperger’s, then “mild” autism, and finally PDD NOS. With my son I really feel like it is tough to see. I see what the diagnosis says, arm flap not always making eye contact, and the specific issues it says he has, but I also see that he looks me in the eye 4-6 times an hour (I literally counted several days in a row), that he asks “what if” and “can I” type questions, that he initiates contact with people, literally invites me to play with him. Etc. I guess what I am saying is that with PDD NOS not everything is obvious all the time, and I too view some of this as more a delay than anything else even if he is on the spectrum.

  110. John Says:

    Rick. Even typical kids have very little concept of time. They generally understand the immediate or sequences of things (bed after stories) but if you ask when you went to the grocery store they might say this morning when it happened yesterday. 3ish would be my guess on when they start nailing this down. My son just started mentioning that he has “friends” and if you press him or if the moon is aligned with the 9th start of whatever he has mentioned a name on his own. But at just over 3 I can say he has mentioned friends and specific other kids maybe 6 times over the past 6 months. But the more they are around each other the more they will talk about them. My boy knows he has a sibling, and if you ask him to list the people he loves he is in the list. You know what you experience…

  111. Tracy Says:

    Rick,
    At 2 1/2 years, it’s pretty early to expect him to know what he did that day at school, for example. I have a typical 7 year old son, and he still says “i don’t know” when i asked what they did today at school. this is pretty common. our typical preschool says at around 4-5 years old, they really start making associations with the broader group of kids in the class – i.e., know all the kids names in his class. My just turned 5 year old (who has PDD-NOS) knows the names of about half his class. He has a hard time recalling what he did on a given day at school, but if I make a couple declarative statements (which don’t require a response), he is more likely to start talking about the day and remembering some of the components. If I ask a bunch of Imperative questions (questions that require answers), he is more likely to shut down and not remember. For example, I used to say “How was school today?” and would always get the same answer “good”. me: “what did you do today at school?” him: “i don’t know”. Those were imperative questions. Now I use declaratives more – me “It was so snowy today, must have been fun on the playground” him “i played in the playhouse and made snowballs”. me “that sounds like fun, i love snowballs” him “i threw the snowballs at the bad guys and we had a battle, it was so cool!” so, you get the gist. i find that using declaratives related to the routine (i.e., i know he goes on the playground every day) helps him become more interested in sharing. For a 2 1/2 year old though, this is probably expecting too much. 3 is when typical kids really start noticing and taking an interest and interactive play with their peers. 4-6 is when they can actually talk a little about it. for a 2 1/2 year old, i would be focusing on trying to get some interactive play going on vs. remembering & describing it.

  112. Rick Says:

    Hi Tracy,

    The only recommendation given to us is ABA, since my son is 2.5 , we want to first start with ABA but as you said I can already see limitations of ABA for my son. I think he will really excel at ABA because he is so good at learning what is taught, but his problems I believe is how to learn on his own by observing others, dont know how we can teach that or if ABA addresses that. When my son is with other kids his age, generally I see other kids imitating him but I dont see my son imitating them. My son does observe other kids but he just wont do things they are doing at same time, may be later after the kids are gone he will go and do the same thing. But he does imitate us ,it came a little late. Also he always understood our emotions so that is not a problem, yet I am afraid , he may not catch the implicit social skills or be socially awkward ,time only will tell. May be RDI will help with that, there are good books I believe which teaches parents how to interact but I know its hard to implement that.

  113. Siobhan Says:

    My son was diagnosed with PDD-NOS at 4yr 8mths. He just turned 5 the end of February. I believe he received the dx because he doesn’t fit on the spectrum at all. He does not stim at all, he plays with other kids, likes to be social and has never had any speech problems and his eye contact is fine. The reason we brought him to be dx’d was because he is aggressive and we were told by his preschool that he could not self regulate. He has tantrums when things do not go his way and he becomes angry easily. He also likes to crash into you and loves jumping and running. Could it be possible that he was diagnosed wrong and it could be something else? I’ve looked into Sensory issues but I am not sure he fits there either. Does anyone have a child similiar to my son in behaviors? I am just not what therapies he would benefit from, any help woud be appreciated.

  114. Tracy Says:

    Siobhan,
    Sounds like your child would definitely benefit from OT. A good OT can work on the aggression and regulation. From what you describe (liking to crash into you) that is him seeking proprioceptive input. An OT can work with your son giving him proprioceptive activities to do to get that input and help regulate his body. Also, the running and jumping (sounds like my son who is also 5) can be a vestibular seeking attempt. Or he might just have a lot of energy to release. Either way, a good OT can work with you to develop what they call a “sensory diet” to help regulate your son. It sounds a little wishy washy, but I assure you, if you build in the right elements into your son’s daily activities, it often helps him to stay regulated. My son is PDDNOS and I believe he is diagnosed accurately. He seems fine to everyone else, but I see the differences. He loves to be with kids, but if you look closely, he plays next to them and often not truly interacting in a reciprocal way. He also gets stuck on certain favorite subjects sometimes. Not too extreme, but a form of perseveration. Anyways, I would encourage you to look for a good OT. And I will warn you OTs are not all created equal. We have gone to a OT, some average one, and now a great one. You just have to try them out – highly recommend staying and observing the sessions so you can incorporate the ideas into your daily life and also evaluate the OTs effectiveness with your son. So many people (schools, therapists, etc.) use the red/yellow/green “zones of regulation” approach. That is the most recent book and considered industry leading (title: The Zones of Regulation). I haven’t read the book, but I’ve seen people try to implement the “you’re in the red zone, you need to move to the yellow zone” approach. “in the yellow zone, your voice gets quieter, you are not crying, etc.” My issue with this is that it tells the child WHAT to do, but doesn’t tell them HOW to do it. When you are mad/upset, how would it make you feel to have someone tell you to “calm down”. It would probably make you more upset. OTs have tools that can help your son figure out HOW to calm down and regulate without having such BIG reactions. Good luck to you!

  115. Debra Moore Says:

    My beautiful daughter is 7..diagnosed with ADHD at 4 but I’ve always felt somethong ore. Receiving of and speech and language. During preschool she became quite aggressive slapping and choking her peers for what the teachers said was ” unprovoked” at first o thought they had the wrong child. This is a child who is an angel at home. Pleasant and well mannered. I cried every day for preschool and would stay behind and peer thru windows to see if I. Would observe her behavior. I hired an ABA therapist who worked with her 2-3 times a week. Seek g this was a private school they had no services and I had no ode what was available to me. I spent over 10,000 in ABA therapy. It helped a lot but still ahresskve at rimes..not several times a day but once a week. I feel like I e been to hell and back. Found a who derfuk public school which offers her multiple therapies. She is bright and I’ve been told that once she learns something she never forgets. She has a phenomenal memory. However we are struggling with math. We spent over one hour on homework which shoud of taken noore than 10-15 Mon. I have an ASD teacher working with her every day for math. They say she is doing good but I’m really not seek g it at home. I really lost it tonight..I’m imploding. What I am teaching her is simple..but she has hard time with the Abstract. What else can o do to help? She has help at school, we have multiple apps on iPad,we are working on a spectrum math for first graders at home. Sometimes I don’t know what’s going g to become of her. I have dedicated every waking moment to this child… sometimes I want to get away from it all. Its so hard to be working on something so much and feel lime your getting nowhere. Don’t get me wrong..she has made progress in keeps and bounds but will she ever be able to do math?

  116. Siobhan Says:

    Hi Tracy
    Thanks so much for your great input. Is OT the same at behaviorial therapy. I get lost in all of these therapies. We did have ABA for about 3 months but quit because it seemed to stress Odin out even more. He would freak out as soon as she pulled into the driveway. He really disliked the lady and my gut told me that it wasn’t for him and he just wasn’t benefiting. Like you said there are good ones and not so good ones. I think we got someone that really didn’t know what our son needed. I feel lost in trying to keep him calm most of the time as he is in a meltdown before I even know what triggered it or happened. I will be getting the book you mentioned and hopefully it can explain some of this to me. I just feel like if my son can’t cope at 5 with his emotions he is going to be a social outcast when he is older, meaning it’s somewhat acceptable to tantrum when your little but being a teenager or adult people expect you to be able to control yourself. The key is in finding the way to help him control his outbursts now. Thanks again :-)

  117. Rick Says:

    Hi Debra,

    I think some kids are better with others than parents, so may be that is the reason teacher says she is doing ok but you are having a hard time. My sister , when she was young , used to have difficult time grasping math but now she has an MBA, so I would not read too much into this right now.

  118. Tracy Says:

    Siobhn,
    Hang in there. To answer your question, no, OT is not the same as behavior therapy. For illustrative purposes, think of it this way… For Autism Spectrum Disorders (of which PDDNOS is a part), there are many types of therapy. The big buckets include 1.) Speech (administered by a licensed Speech Pathologist SLP), 2.) Occupational Therapy OT (administered by a licensed Occupational Therapist OTR or Occupational Therapy Assistant OTA and 3.)Autism Therapy. The #3. “Autism Therapy” is a big bucket. Generally it can be broken down into 2 main styles A. Developmental Model Style or B. Behavior Model Style. ABA Therapy is a “behavioral” approach to therapy. Verbal Behavior is also in that bucket. Therapies like Relationship Development Intervention (RDI) and DIR Floortime and Sonrise are the major “Developmental” style therapies. The philosophy between Behavioral and Developmental model approaches are QUITE DIFFERENT. Based on your post, I’m guessing you might want to try the Developmental Model style Therapy with your son. We too did ABA for a while, but the way they teach is based on “reinforcement” and you “train” the child to give appropriate responses. We did ABA/Verbal Behavior for a year and I found that it squashed my son’s spirit a little and it did not teach him to “think” for himself. He picked up a lot of “skills” but thinking for himself in a dynamic/changing environment was not one of them. So, we are doing a mix of therapies now to address that need. OT is different from these therapies and usually used as an add-on. For your specific situation, I would highly recommend you do OT to work on self-regulation and coping skills. The other therapies can work on that too, but OT for sure. Also, I have heard of the “Nurtured Heart” approach which is a developmental style of dealing with behavior problems but I don’t know much about it. Also, have heard great things about the “CALM” approach. Again, haven’t needed to do it for our son, but people rave about that one too. Hope this info helps!

  119. John Says:

    Bernard and everyone, Can I get an opinion? My son is trying to talk to kids his own age, just under 3, and adults too but none of them respond to him. He literally has said “Excuse me can I play with that?” And the other kid just looks at him or doesn’t even look up. I do think that he is using phrases that we have practiced, but it’s just really frustrating to have him TRYING to interact with kids and it not happening when that is his a big issue. I think it may be because his speech has that sing song quality to it. But still. It’s even with adults. He asked a parent how old a baby was, “I’m sorry, excuse me, I have a question, how old is your baby?” And she just looked at him with a blank look. Is this a common PDD NOS problem? I am assuming this is a social cue and inflection issue and voice volume issue?

  120. Bernard Says:

    John,

    I have a lot of experience with this. It is funny how kids who are on the spectrum get help learning how to socialize and then try to use those skills only to be mocked or ignored by the “normal” kids. Eli faces this all of the time and he looks at me with great sadness when the kids he approaches does not respond in a positive way, or in anyway at al. When it happens I congratulate Eli on trying and tell him that he did a fantastic job engaging but that some kids are shy and don’t know what to say. I try to encourage him to use other tactics to try to win the other kids over. Like bringing an item over like a ball, frisbee or toy over and see if that interests the kid. Sometimes nothing will and I shake my head and say, that kid right there needs a therapist to show him how to socialize.

    What it comes down to is extremes. Kids who get support and learn how to be social are repeating a learned trait, and it starts as an unnatural action that I think other kids get spooked about. Eventually your child will become more natural about it and it will just happen and kids will react. Eli has come a long way with that and I am often shocked how he will join in a conversation or strike one up with someone when awhile back it would be a totally unnatural experience. 3 is still pretty young but it sounds like your son is doing the right things. As he gets older it will be easier and don’t fret, the four, five and six year olds have little to no social skills either. It is probably NOT your son, it is probably the other kids. I see it all the time.

    Just keep encouraging and rewarding the social behavior!

  121. Christine Perry Says:

    Good evening. I have an 8-yr old boy diagnosed with NOS-PDD. He has gotten over the bad behaviors in the home by the age of 6. He has had very bad behaviors in the school, they have no clue how to deal with him. IEPs do not help. The teachers believe he is disrespectful and has a behavior problem, that he can control his outbursts. They also insinuate that his behaviors are learned at home ??? The last outburst got a call to police, he is now being charged as a deliquent under the age of 10 and this is costing me a lot of money for a lawyer.

    I have therefore taken the proper steps to legally homeschool him and I have decided that I will not allow the school to tell me what to do. I have insisted on the functional behavioral analyst, even though they told me they do not have one. I have insisted in a safety plan – even though they told me they cannot stop him from running outside the school. They have finally agreed to an educational autism eval, however he needs to be in school for them to do this.

    So now we have a CHIPs order, the county thinks he is a bad kid – they insist he doesn’t have autism even tho I have diagnoses from a neurologist, one of the best in Wisconsin, a diagnosis from WEAP (Wisconsin Early Autism Project), and an additional diagnosis from the Autism Team at Marshfield Clinic.

    So we sit an wait to see if they will now do an investigation on our family, unnounced home visits, and on and on, parenting classes, I couldn’t believe what I was reading. There was absolutely no basis for their decisions and I am just flabberghasted :(

  122. Linnet Says:

    Bernard, thanks for this wonderful site.

    Our son was diagnosed a few weeks ago as having a PDD-NOS. He is 28 months. Going through the insurance company and all of its bureaucracy takes time, and I find myself feeling very anxious while I wait for the services to get started. The developmental pediatrician has recommended Speech Therapy, OT and ABA. I feel like time is wasting and he should be getting therapy now. I was wondering if you had recommendations on any ABA like therapy or any other activities I could do at home with him that mirror these professional services/therapies he will be receiving. I have looked online but I haven’t been able to find anything helpful. It is just so frustrating to have to wait months at the time to first be able to receive a diagnosis and then to start the actual services, specially when time seems to be of the essence for these young kids.
    Thanks

  123. Rick Says:

    Well responding to John, I believe since we teach our kids how to socialize, they may be slightly ahead of curve compared to children of same age. This happens to my son as well though he is only 2.5, he tries to say “hi”, “bye”, “how are you” etc to other children and many a times even non pdd-nos kids don;t know how to respond , but I am happy my son is doing these gestures and talking which will help him in the future. One thing to remember is that there are so many adults who are not that social as well, some of people in my community are that way, they are not at all friendly towards other kids and adults. But I guess that is good in a way, so that my son learns that there can be situations where people do not respond :-)

  124. Maggie Says:

    Christine…I just want to comment on how difficult it is for me to get the school to listen too and do something. And your are right…The IEP system has a lot of improving…my son is almost 10…I can relate to what you are going through. Mine is very similar to yours.
    It gets so much harder as they get older. School is harder and they are more and more fustrated. Kindergarten and first grade was so much easier.
    I am sorry you are going through this. The school owes your son an education. They need to do something. I cannot believe even with a diagnose they dont see the issues. They are wrong and not helping your situation. I feel bad for your son.
    Here is my email address if you want to email me directly. margareto@ymail.com

  125. Tracy Says:

    Linnet,
    There is a company online called “Maximum Potential”. They offer training for parents in ABA and Verbal Behavior techniques. It is a series of videos that you purchase. In addition, I would go to a couple local centers, apply, go through their “intake” process and get on the wait list. They might let you “observe” therapy being done with other kids so you can get a feel for what it is like. We did ABA for a year and a half when my son was 3. I did not like the ABA approach so we ended up changing our plan to a more developmental approach. He did make a lot of gains over the year and a half with ABA though. ABA is centered around breaking things down into simple steps, doing them over and over repetitively, and using positive reinforcement. Make sure to evaluate “developmental” centers too. Pick your favorite and go with it. Good luck to you!

  126. Rick Says:

    This message is for Linnet, I have going to the same trouble with insurance and process. My son was diagnosed at 28 months too in Jan and we still are not able to start with ABA. But meanwhile we have got started on ST and OT. I strongly suggest getting ST started soon since it has helped my son a lot, we had to start speech ourselves (with private speech therapist) not waiting for insurance. OT has also helped a lot but I think if you cant get it started soon you can take him to indoor gym for toddlers and get at least work on his gross motor skills.

  127. Siobhan Says:

    Tracy ~
    We have found a place to do OT with Odin and he will start after spring break, I am excited to have found a good place.They also work in training the parents to deal with different situtations. I got the book The Zones of Reguation at the library and have started to read it. It is making sense to me so far so hopefully I’ll be a pro at the end…LOL
    His preschool is bringing in a behaviorial specialist to observe our son in the next couple of weeks, so hopefully they will have some good input for us. We do have a great school district that has been wonderful with our son so far. So I am keeping my fingers crossed that things will start to work for him and we as his parents can also start to figure out his triggers etc..

  128. Linnet Says:

    Tracy and Rick,

    Thanks for your responses. We have an appointment tomorrow with my son’s pediatrician to fill out some forms and find out what the insurance will cover. We are a military family and our insurance may not cover everything. We may have to take an extension of our current insurance and pay an additional monthly fee in order to get his services covered. We are stationed at OK right now and there is a free government program up to age 3 but we have been waiting for the initial appointment for weeks, we got it weeks ago for the 9th of April. So hopefully we wont have to wait too long to hear back from the insurance company. We are willing to do private therapies if we have to but we wanted to first find out what the insurance will pay for. I guess sometimes all you can do is wait. I did find some stuff online and Tracy I checked out the site you suggested. It is hard sometimes to get him to listen to me. Maybe it is easier for a stranger to play the authoritative role. I started doing an exercise where I get him to come sit down on a chair and we go from there to try to teach him to follow directions, but it wasn’t working out too well. I will keep trying. Thanks for your support and for your feedback.

  129. Hilary Says:

    Hi, I just found your blog when through a google search for PDD-NOS. My son, 5 1/2, was just diagnosed today. He was diagnosed with PDD-NOS, Stereotypy and Developmental Delay. We went to the neurologist as a final step determining if he has Tourette’s Syndrome, which 3 separate doctors suggested I look into. So naturally, I was quite shocked with this diagnosis. The Stereotypy diagnosis does not surprise me. He has flapped his arms with his mouth wide open since he was a small infant….but he hardly does this now. He does however make a spitting/machine gun type noise while walking in circles (around our play table) with his arms in the air and spinning his hands around – often looking up at his hands while doing this. He does NOT do this at school, never has, but pretty much the second he gets home from school (he’s in a 5 day Junior Kinder class) and especially while watching TV or when he is bored. He has a lot of OCD-like behaviors. He was totally obsessed with all things trucks when he was a baby…he started talking at 101/2 months and was speaking in 6-10 word sentences at 16 months. He had a truck alphabet book memorized by the time he was 15 months old. At 2 he latched onto skeletons during Halloween. It never stopped. He carried a plastic skeleton with him everywhere until he was 4 1/2. It was so embarrassing (especially because he goes to a Christian school that doesn’t celebrate Halloween! ha!) – and now, his latest obsession is Super Mario Brothers. He went on a play date and his friend had it (we did not) and it’s all he can think about or talk about…he got it for Christmas but he literally breaks out into hives when he plays for more than 20 minutes or so we had to limit it to only twice a week. Anyway – he’s VERY social, LOVES other kids/babies etc. – but tells me when there are “too many kids my eyes get very dizzy”….although I would never classify him as socially uninterested – which is why I was so confused by this diagnosis. We saw the neurologist for 1 hour today before she diagnosed him. Was it that obvious and I was just not aware, or should I seek a second opinion? He seems to fit the description other than language and social delays (of which he really doesn’t have any), but he’s very sensitive, has outbursts and tantrums, irrational fears and worries, obsessive thoughts and repetitive stereotypic movements. ….any help is appreciated…I just don’t even know where to start other than calling insurance and setting up ABA and Occupational Therapy like the Dr. said to do…..Thanks so much. – one worried Mom.

  130. Hilary Says:

    PS – we have been gluten-free for 6 weeks (my son and I both have) and I probably always should have been, so it’s been a total relief for me, but he has also responded really well. He never had obvious gastro issues, but when I let him have gluten over the weekend (regular hamburger bun) he had an awful stomach ache about 2 hours later and through the night, then diarrhea the next day. so I feel like we’re doing the right thing. Behaviorally, he’s much calmer, able to tolerate more and is a little more easy-going with change in routines. so that has been a blessing. Just thought I would share. :-)

  131. Tracy Says:

    Siobhan,
    So glad to hear you have been making progress, getting OT and doing some research! Best of luck to you :)
    Traci

  132. Rick Says:

    My son has made rapid progress after speech and occupational therapy so much so they said that his expressive language is on par for his age and he does not have any fine motor or gross motor delays now. He has been on therapy for 3 months now and he is 31 months old. He still has delays in perceptive language and adaptive skills (self help skills that I am not too concerned). Also they told me his pre-academic skills are at 4 year old.

    Has anyone had kids with very good pre-academic skills early on and I am curious to know how they performed in school as they grew older. Please let me know if anyone has such experience

  133. Maggie Says:

    Grammar school changes a lot. More pressures on our kiddos. My son did great until first grade. As the demands got tougher he had to deal with more stress and naturally got more fustrated. He is in 4th grade now…and we take it one day at a time. We have good days and bad. He is very very smart..but its the social demands and all the other PDD issues that they are still learning.

  134. Stacie Says:

    Rick,
    My son always had very strong pre-academic skills and they have certainly carried into school. He has never been anything but at or above grade level. He’s now in 1st grade. His memory is awesome and I think that certainly helps with school.
    Great news for you on how wonderful your son is responding to therapies!
    -Stacie

  135. shoshana Says:

    Stephanie,
    If you are still following this site, I would like to ‘converse’ with you.
    I have a teenage daughter with full-blown PDD-NOS, anxiety and OCD and she was just diagnosed less than a year ago.
    Her development is definitely all over the place.
    I’ve always suspected my husband of having something similar, but he is not going to get tested or anything. He’s coping, and he’s changed a lot (for the better) during our years together.
    Shoshana

  136. Jenny Says:

    Hi, I just googled the topic of pdd nos and found this blog. Thanks to share the same experiences here.

    My son is 3, he seems to have pdd-nos, pre-school teachers told me twice to bring my son to do some assessments. He has no social life at all in school, no friends, throw out temper sometimes, no eye contact, cry without a reason.

    He speaks ok at home but very shy at school, talk very very little. But teachers say he is good at alphabet, number and shapes, he is very bright in academic compare with other kids. He likes flagging hand when he feels extremely happy. I am scare to take him for diagnose, just don’t want to label him.

    Pdd nos, only social not good?? Are there anything wrong follow when he growing up? I am keep bringing him to play more with other kids. Does it help?What do you think?

  137. Tracy Says:

    Hi Jenny,
    My son is 5 and has PDD-NOS too. We had him evaluated at 3 yrs. They said that because of his age (at the time 3), we should seek therapy right away and get him retested in a couple years. My son had some delays, but not too bad. If your son has no delays or is advanced, there is a change he might be Aspergers. Aspergers kids are on the spectrum but have no cognitive delays, their delays are social and often have emotional regulation issues. I know the Aspergers definition is going away, but thought I would mention it as a possibility. They would not classify him in this category while he is still so young. Regarding what to do, I think that bringing him to play with other kids as often as possible is a great idea. However, just turning him loose and observing is probably not the best. You need to get in there and guide and facilitate to “teach” your child how to play and interact with other kids. 3 and 4 year old kids are NOT good models, so you will need to work with your child directly as well (and get him therapy if you can). What I have found with my now 5 year old is that working with him directly for the last 2 years, one on one, in a play based format, trying to teach joint attention, play skills, conversation skills, initiating with others, etc. has been a great foundation for him to build those abilities so he has competence when interacting with other children. Doing the interaction with an adult is very effective in the beginning because you can slow it down, break it down, explain things, and “teach”, where a typical 3 or 4 year old would definitely not do that. Then you can have him practice with the typical kids. I highly recommend buying Steven Gutsteins “The RDI Book” (the yellow one). Also, look up the Sonrise program online and watch some of their videos. Good luck to you!!!

  138. Balaji Says:

    Hi,
    I went through the blog and it was interesting to see the experience of other parents who are undergoing with similar worries. My son was proper till age of 2 and he used point things and say words. He even used to repeat some words. Unfortunately we moved overseas and he used to be in the home alone most of the time. He started showing sign of staying in his own world most of the time and watch Mickey mouse alone. We felt it was due to loneliness and change of atmosphere.

    By age of 3 he started becoming interested in running stopped telling words and never interacted with anyone other than us. Either he used to sit one corner of house thinking or running. But he used to ask for food or any other eatables that he needs. We were upset and took him to pediatrician but he said everything is normal. By 31/2 we lost patience and went back to our native country in search of lovely son’s life. We took him to his pediatrician who has been checking him from birth. He referred to autism specialist and thank god he was not diagnosed positive. Later he was diagnosed with lower level of PDD – NOS. He is going on OT, speech therapy 6 days a week for 3 hours.

    He has shown improvements and has started repeating words. But we are very worried to understand how long he will take to come out of this. He will start going to regular school in next couple of months but very very nervous as we don’t want anyone to stereotype or say something wrong.

    But I am confident that he will come out at the earliest. Any suggestions are welcome.

  139. Rick Says:

    Hi Balaji, I believe you are doing the right thing, 3 h for 6 days a week is very good,I am sure your son will talk a lot soon. My son has been going just 1 hour a week and we see a lot of improvement over last 3 months. When I say lot, 3 months back he had only 20 words,now he has many (have stopped counting) and he even says 2-3 words together. We also continuously interact with him, my wife does not work (gave up work) and interacts with him, having a lot of people around also helps. Older children around also helps a lot, so try to have play dates with older children.

  140. Kevin Says:

    Please help me reduce my fears,
    My son just got diagnosed with Pdd Nos two days ago. I am an adult neurologist and I came here to talk to parents because doctors and the medical literature are not as helpful. My son just turned two in March, he was born healthy and reached all his gross milestones early. At one, he would call me Baba and call his mother Baba. I always knew his speech would be considered to be delayed but thought it was just like any other kid these days and thought he could get speech therapy and he’ll eventually catch up. It wasn’t until his mother took him to his pediatrician that my son was recommended to see a pediatric neurologist for possible ASD. At first, I was like no way she’s crazy, I’ve studied these things my boy is fine just needs some speech therapy. However, this sparked a hundred questions in me. My son knows a few words, doesnt call me daddy or his mommy as much and his eye contact although present is intermittent and sparse depending on if you have something of interest to him. He spends most of the day playing on the iPad and learned the alphabet in two languages, numbers to 10 in two languages, and easily assembles adult puzzles. Yet, he can’t ask for anything and no two word sentences. He is constantly singing ABCs. He enjoys going go park but we really have no friends in the area so not a good opportunity to test his he plays with kids. He does have some imaginative play and doesn’t care for spinning toys or toe walking. He does flap his hands but only when he his excited or angry. His tantrums are mild to moderate in strength and timing. Every doctor or therapist we went to tells us their kid has some sort of ASD. I am starting to think that this a personality trait or a phase that some children go thru. Who am I to criticize what the medical body has agreed upon but the amount of pstients getting diagnosed with this is getting ridiculous. As an adult neurologist, I see patients all the time being mislabeled and treated for epilepsy when all they have is a psychiatric condition that deserves psychotherapy instead of potentially toxic drugs. Doctors are not through enemy but at times they can be foolish if they rush into s diagnosis. Nevertheless, I am concerned for my son. I don’t know how this will play out. My wife refused to accept the diagnosis saying that my boy needs just some extra time for speech and more interaction with kids. We are still waiting to have the agencies call us to start setting up sessions. For now, I plan on taking away the iPad as I feel that it could have caused some of his restricted interests. I never see adults in my practice with PDD, I would like to get more info from parents, how many of you have experience with curing and reversing this condition to nonexistent so that the kid is on track to a normal life.

  141. Richard Hoffman Says:

    @kevin, take it as a blessing.. your son will have the help that you and your wife cant give him.. to ea their own, his learning comes at his own pace. most insurance cover aba and speech . He will learn to use more tools and vocal his needs when he is ready, not with a mile stone in a book. Often have kids around that are their with specialist helped my sons speech, he is now 3.
    My son worried more about gross motor skills and less about fine motors like speech, now he is understanding that with out speech and fine motor skills no one understands what he needs.. it all comes in time. Dont loose sleep over it, i did until i saw little by little with aba and speech helpped him articulate what needs he had. He still a ways away from typical mile stones, but that doesnt matter the ned result is what matters most.. his happiness

    better to be proactive then reactive :)

  142. Tracy Says:

    Kevin,
    Here’s the deal, regardless of whether or not your child is diagnosed or misdiagnosed with a PDD, you have nothing to lose and everything to gain by seeking lots of therapy right now. There is nothing more impactful than early intervention for any child (even non-PDD). Get speech services multiple times a week, get OT a couple times a week, get “autism therapy” (several kinds/options) to help him work on verbal communication, non-verbal communication, and social interaction. These are all positive things that will help ANY child and will certainly help a child with a diagnosis. My son was diagnosed at 3 yrs with PDD-NOS. He looks typical, but I believe the diagnosis is accurate. There are some holes in the foundation that these therapies can help with. He got 20-25 hours of “therapy” a week plus went to typical preschool a couple days a week. He is doing great. We are private about the diagnosis and no one knows. Not even his typical preschool teachers. The therapy helped him build language skills and some academic skills so he is confident at school. We are still working on social skills as he is only 5 and has more development to come in this area (as do a lot of 5 year olds). So, I know it is scary and shocking, but get the therapy as soon as possible. Don’t just take what is offered by your county, find the absolute BEST programs in your area and find a way to get your son in. A lot of places have long waiting lists, so get on the lists now, even if you don’t think you will go. You want options. Lots of options. Best wishes to you and your son. My little guy is doing great and will be going to kindergarten next year. Have faith, but be vigilant to get your son the right kind of therapy. And you will only know what is the “right” kind of therapy by going and observing at all the places. It is exhausting, but so very important. What state do you live in?
    Tracy

  143. Rick Says:

    Hi Kevin,

    For many reasons, I completely agree with you on the iPad part, more research needs to be done but I strongly believe iPad\iPhones messes up highly visual and intelligent kids. Its like kids getting addicted to computer games when they are older, you will see those kids would also probably interact less, have less eye contact, are less social. If possible ,completely stopping any screen time would help but its not always possible in this era of gadgets. And I also agree with what you say about the current diagnosis procedures, I feel many but not all psychologists are very bookish and do not have experience. Its better to get evaluated from senior doctors\psychologists who have seen hundreds of children for years and observed those children as they grew to adulthood.

    Rick

  144. Rebecca Says:

    My son Matthew is 3 1/2 and was diagnosed with PDD-NOS at 18 months old. from 18 month – 3 years old he received extensive (20 hours per week) Early Intervention ABA services. He is now in public school doing 1/2 day in a special ed class and the other 1/2 of the day in an integrated classroom. My son is sweet, charming, does make eye contact and enjoys social interaction. However, he is HIGHLY active. We have a difficult time taking him anywhere in public due to his high activity level and bolting tendencies. At night he sleeps in a crib tent because he woudl otherwise climb out and roam around all night. He likes finding boundaries and knowing there they are. If we are in an area that is open (like a wide open field) he will run, run, run until he finds something that stops him. He also has a high pain tolerance. Does anyone else have similar experiences with their PDD child? Will this ever subside or will he ever “mellow” even just enough for us to be able to go out as a family to places together? We have two older children (8 and 7) and we are constantly divided to do activities. One of has to be home with Matthew because it’s so much easier than bringing him and having to chase him around around a restaurant or park. We constantly worry for his safety. Doors must be shut anywhere we take him or he will bolt in a split second to “explore”.

    Any advice, words of reassurance or even any products out there that others have used or found helpful with their highly active PDD child would be very helpful! Thank you for “listening”.

  145. John Says:

    Hello fellow parents, ABA question here. So my just turned 3 year old (37 months) started ABA this week, and so far its been painful. My son is highly verbal and scores in the high to very cognitive scores. To be frank I am not sure the ABA providers, who are supposed to be top notch, know what to do with him. I know it is the first week but he really does not seem to like them. He cried when they came back today. What is odd from our perspective as parents is that he is pretty compliant with our requests. But the simplest request from them is met with crying and the answer of no. They keep saying this is normal. But he would never act this way with, well, with anyone else he meets. They haven’t actually started ABA yet, and I don’t understand even why they are placing any demands on him right now. From what I have read they should be pairing and trying to get his trust at this point. Any comments?

  146. John Says:

    Hi Kevin, Get your son tested by a developmental pediatrician if you have not already. Try to remember that everyone has some level of behaviors that are on the spectrum (who doesn’t jump up and yell when something really really exciting happens, I’m bobbing my legs up and down right now, it’s all a matter of context). The developmental pediatrician can let you know where your child is skill wise and will provide a list of suggestions to raise any low skills. Once you have the response from the DP contact your local school district, or even before and see what services they have. Often school districts have a pre school with students who need a little help (speech, physical therapy etc) and with typically developing students (who are lucky enough to get into a free preschool! as a result) but your district may not have this. They may also offer therapy and will most likely want to meet with your son. Kids develop on their own schedules, unfortunately sometimes the world can’t wait for that so as parents we often need to help our kids catch up. My son is diagnosed with PDD NOS and at leat once a day I find it laughable because he talks, plays with kids, etc. Other times I worry. Sometimes I cry. I cry because I don’t know what the future will bring, but also that is a source of joy isn’t it? Because for so many of these kids on the spectrum 10-20-30 years ago they would have just gone through life. Maybe being thought of as quirky, or maybe not too bright, or maybe fiery, or maybe something really bad, or maybe as an eccentric genius. I think that part of what makes this hard as parents is that it can be seen as a mental disability, it would be easier in some ways if my son was in a wheel chair but was typical socially. It really would because certain fears would be gone. But what you have to remember is that the future is not written. We have to help our kids, any kids really, write the best future they can.

  147. John Says:

    Hi, One last comment for me today. I am still relatively knew to this life but one thing that seems to pop up again and again from some parents is the story that, for whatever reason, everything was fine and then a period where there was isolation happened or a series of negative events happened to a child, or a child lagged behind developmentally and everything has suddenly snowballed. This makes me think, and other parents have mentioned this to me as well, that the best way to view anything like this is as a delay or lack of a certain skill(s). And just like anything practice makes perfect, or at least improves. I would bet none of us could be the next Picasso. But if we studied for a few years, maybe even having to study way too hard, we could get pretty good or at least passable as an artist. So I’m just trying to get some skills going with my kid so that as he grows up and becomes the fully grown person he will some day be, he has the skills to enjoy what parts of life he can enjoy. My son may end up being able to “pass” as it were, and this may take another 20 years for all I know, or he may always be delayed. Who knows? But to do nothing helps nothing. A rising tide lifts ALL boats. If you view these things as a delay in skills it helps focus you, and I think allows everyone to enjoy their lives more.

  148. Erin Bond Says:

    My 8 years old son has been diagnosed with PDD-NOS in Dec. 2012. My husband and I want to give him the best and all the help and work we can give him. Right now he is in public school making A’s and a couple B’s. We are having issues with him wandering, not being able to sit still in class, distracting other students.

    I have been playing with the idea of homeschooling. That way we can take him to what ever dr. appts needing to be taken too and getting him in programs to be around children on is level. My husband also has a job that could relocate him and it is affecting my son with him not being here. I am torn on what to do.

  149. Aileen Says:

    Hi! I was looking for comfort and came across your site. I have read most of the replies and have found the courage to face diagnosis. My son is 1 year old and I have noticed he was different somehow at about 6 months old. Before that he was totally fine. He was babbling at 3-4 months. Nowadays though, he babbles too little and makes vowel sounds with an either throaty or nasal voice. He does rasberry sound too. He flaps constantly when happy. I’ve seen him look at his hands and stim. He likes to play/turn the wheels of a toy car. He fixates on dark spots. He has started to cruise a week or two before his 1st birthday. He can’t walk yet. He has no comprehensible words. I wonder if he will ever have them? I want to get a diagnosis soon but I’m too scared. I love him so much and worry about his future. I cried today and prayed for strength. I have a 6 year old and was labeled gifted by his teachers. He worries about his brother not talking and asked when his words are coming out. I don’t know how I will explain to him that Micah may never have the words.

  150. Jessica Lynn Says:

    Hello!
    I just want to start by saying that this blog you have created is one of the most inspiring and heartwarming things I have come across since my daughters diagnosis a year ago. I am a very active parent and I have completely altered my life to support my daughter and get her the help she needs to work through her difficulties. I love her so much, and it makes me proud as a mother to watch her grow day by day, but there are a lot of times when I feel totally alone. People don’t understand what I’m doing or why I’m doing it. They listen when you tell then you have a child on the autism spectrum, but the usual response is “oh I’m sorry to hear that” . That is one of the worst responses a parent could hear.. I feel like saying “it’s not like I’m announcing a death in my family or something, I am talking about my child! And why are you so ‘sorry’ to hear that?!” Ugh I don’t know if its just me being sensitive or not, but it really bothers me when I can not find one person to relate to. Reading this blog has made me feel like I’m not alone, I have read so many posts on here that describes the way I’m feeling as a parent. Even though i am so optimistic about my daughters future, there are days when I let my fears get the best of me. I sit up for hours on end trying to find answers that do not exist. I’m searching for an answer to my daughters future and the uncertainty really scares me. I just don’t want her to suffer, I want her to be able to relate to people around her, I want her to have a fun childhood, I want her to hang out with friends in high school, attend prom, graduate, attend college, date people, fall in love, get married, start a family, and just simply lead a fulfilling life. I want nothing more than to help her to live like anyone else. But there are those days when I just petrify myself and I worry that those things are not in her future, or that she will not overcome her difficulties. It is just so hard to deal with these emotional roller coasters you go on as a parent of a special needs child. Especially when you do not have people around you who can relate. I had best friends since I was little around up until I have birth to my daughter, then they just disappeared. And the few who did stick around barely associate with me anymore because my schedule is to hectic and I can’t do the things they want to do because my daughter comes first. I just feel helpless sometimes. My daughter means everything to me and I just want the best for her, but it is extremely hard to go through these struggles without a support team. So I am very thankful that I found this website, because even if I don’t know any of you personally, by reading your posts I feel like I can relate, which is something I have been yearning for, for quite some time now so thank you :)

  151. Tracy Says:

    Jessica,
    I can totally relate to you and your experience. My son is 5 now and he is the priority. I too, feel isolated and alone much of the time. I keep telling myself that it’s these important years when he is young before he’s in school that we need to maximize. We do play therapy and he has fun, we do speech and OT etc. The days and weeks fill up fast and there is no time for lunching with the ladies or hanging out on the patio for hours drinking wine like they all do. I forced myself to go a couple weeks ago and found myself not able to relate to them. All of their “problems” seem so insignificant to me. And we haven’t told anyone about our son, so I have to play along like everything is ok. I don’t have the energy for it. So, I guess what I am telling you is that you are not alone. You are an awesome mom who is prioritizing your child first. And for that, you and your daughter will be so much better off in the long-term. Hang in there and celebrate the small wins. You don’t happen to live in Minnesota do you?

  152. John Says:

    Aileen. Go to your pediatrician and tell them your worries. They will insist you get your child tested. Go from there. The longer you wait the more worried you will get. Waiting only increases your pain and angst because not knowing for sure or what do will eat at you. Once you start there will be professionals to tell you what to do…

  153. Dirk Says:

    Does anyone else think that we make a lot of demands on the PDD NOS child? I mean in comparison to typical kids the same age? ABA enforces please and thank you and eye contact, we read social stories about manners, etc. How many little kids do you know have good manners? You know what I mean? I don’t think therapists and even myself as a parent would be happy unless these kids were speaking like politicians and making eye contact 100% of the time. I’m not saying we shouldn’t be doing this. But to try and get a 5 year old to do something ALL the time just so he does it some of the time, it strikes me that most typical kids don’t do these things ALL the time. I don’t say this as a mental gymnastic move to say both sets of kids are the “same.” And I can only assume that maybe the gulf widens between the ASD kids and the typical kids as the grow older.

  154. Bernard Says:

    I have said this before 100 times on the blog. The PDD-NOS child who is receiving services becomes a student of proper behavior to the point that they are more socially accurate than most “normal” children. Eli has approached kids and said, “Hi my name is Eli , do you want to play” and the kids look at him like he is a freak for the introduction. We teach our kids and force them to take what the psychologist or therapist thinks is appropriate behavior which turns out sometimes to be as inappropriate as it can possible be.

    In the end, as they get older these lessons are required and the behavior is eventually correct but still can be socially awkward. Eli asks me in these situations what he did wrong, and I tell him nothing, that he was awesome and he responds that the other kids are weird. Funny how that works.

  155. MnDad Says:

    My son recently got diagnosed with PDD. We knew something was wrong from 2 years onward. Speech was delayed and hand flapping.
    Now at 3 yr 5 months he talks but doesnt have any conversational skills.
    Doesnt use age appropriate grammar.
    Also throws frequent temper tantrums.

    At this point of time we are wondering what the future holds for him.
    Nice to read about Eli and thats what gives us hope.
    Any suggestions on what therapy will be more benficial.

  156. Bernard Says:

    I strongly suggest speech and OT therapy with a SEIT who intervenes with your son in situations where he needs to be encouraged socially communicate. The therapy worked with Eli because his SEIT would react to situations as they occurred and coach Eli through it. Thoughts?

  157. Tracy Says:

    What is a SEIT?

  158. Bernard Says:

    A Special Education Itinerant Teacher, or a Special Education Intervention Teacher…I have seen it stated both ways. Basically it is a specialist who understands all forms of development disorders who joins your child’s regular education team and steps in to help coach your child when they are not acting appropriately. Any chance there is an opportunity for your child to do something in a better way they step in and assist. The result is your child learns more appropriate behavior. There is a much more to it, so you should do your research. It was Eli’s saving grace.

  159. Rick Says:

    Hi,

    My on is almost 3 and he jumps a lot when excited to an extent that other kids think he jumps like a kangaroo, has anyone else had this issue, did it eventually go?

    Rick

  160. rose tardi Says:

    Just saw your website. It was very informative. My daughter is going through the same things with her daughter. She is enrolled in an early intervention program and is now in the process of trying to get her into an all day program for the fall. I know talking with you would be a big help for her. She does not have access to the internet. At the start of you website you mentioned people could call you, but I did not see a phone number. If you could forward one that would be a big help. Good luck to you and your family and thanks for any support you can supply.

  161. Dirk Says:

    I wonder the same thing sometimes. My child flaps his hands and jumps when excited. ABA wants to extinguish the behavior but our other providers openly say it will just go away as he matures, and they would suggest riding the hand flapping out and focus on other things. All the literature does say that ASD symptoms do tend to lessen with age, to an extent. Anyone else let something just ride out and see what happens?

  162. Dirk Says:

    Rick, My brother in fact did a pronounced skip and a hand flap as a kid till he was around 7 or 8 when he was excited. But he’s (supposedly) neurotypical (although he definitely had some sort of reading problem as a kid, he could barely read till like high school, but he graduated from law school so it couldn’t have been that bad or he figured out how to compensate). And lots of kids flap their hands when excited. It is when it appears with other issues that makes it a “thing.” I would think if a child has OK communication and OK social skills that eventually some other issues would be self-extinguished. But I would like to hear some other people who have seen it. Like I said my brother did, but he is neurotypical as they say.

  163. Rosanna Says:

    Hi,

    This is awesome! I do not have a lot of friends especially friends with a child with any disorder such as PDD-NOS like my son so this is somewhat of a relief to see i am not alone. My son was recently just diagnosed actually today just a few hours ago we had our CPSE meeting. I am going crazy trying to find a school for him in NYC does anyone have any suggestions? I need all the help i can get .

  164. Cricket Says:

    My son is going to be 6 years old. He was diagnosed with PDD-NOS at he age of 3. The psychologist said he would not receive any services. She also said the ABA work wouldn’t help him. In addition, our county agency told us they could not provide services because his cognitive abilities are too high. I still see him struggle with issues of aggressive outbursts, rigidity, and socialization. He does get speech help at school, but I feel there should be something more for him. Please let me know how to get help for my son.

  165. angela Says:

    My son is 22, with PDD I need help navigating the new world of adulthood. There is very little help available . I guess I really would love to know I’m not alone.

  166. Suzanne Says:

    Our son has been in EI since he turned 2. He will be graduating out of EI in two months. I expected to see more changes. Instead, it almost feels like he got worse in EI. The EI therapists will say things like “Oh he finally recognizes his own picture” and my reply is–he’s always recognized his own picture. Or they’ll say “he’s finally saying ‘Mine'” and I’ll say, “that was one of his first words at 18 months.” They tell me that he’s not generalizing and so what he does at home (or at his mainstream daycare before we took him out and put him in EI) wasn’t being applied to their classroom setting.I’m not sure I totally buy that explanation.

    I guess I have two questions for any wise parent whose been through this process. Did you feel like EI was a positive? Did you see significant changes? If we’re not seeing changes, is it because of our child’s potential or because the treatment/setting are wrong?

    Second question, as we prepare for the school district transition, what should we be doing? What questions should we be asking EI? What should we be looking for in terms of treatment plans (I know you can’t do specifics to my child, but maybe what parents found worked for them)?

    Thank you so much. This is a great sight and I have found a lot of inspiration in the comments too.

  167. Rhona Says:

    My 9 year old daughter has just been diagnosed with PDD-NOS. I have tried since she was a toddler to get someone to see her the way we saw her. Instead, I was a failing parent with poor discipline skills :( She has finally been assessed after we moved to a new country where having to learn a new language robbed her of thevfew social skills she had. I’m going to be assessed myself, she is a mini-me. It’s a very confusing and frightening time for us, but also quite hopeful and positive. Thank you for your helpful site.

  168. Cheryl Says:

    I am a teacher, I taught special education in an elementary setting for 9 years, my 9 year old son was diagnosed with PDD-NOS two weeks ago. I am currently teaching a regular education kindergarten class and have been out of the special education scene for 8 years. I have had concerns for a long time, but wasn’t really listened to by my Pediatrician about my concerns. I went to a different Dr this summer at our Convenient Care center who listened to me and sent us for an evaluation. My son is very intelligent, but I find myself needing to change my discipline style with him and am at a total loss as to how to handle him. I have an older son and a younger son as well. I was “encouraged” by staff at our school not to pursue an IEP at this point since it is not affecting his academics. (He is a straight A student.) I know my rights and I know I can demand a school eval and get him services, at this point I don’t even know what services to ask for. He will be heading to the middle school in 2 years and this scares the life out of me… 7 teachers, 7 classes, switching classes, and knowing where his supplies, homework, pencils… are… he is very unorganizeed at this point. His Psyc report suggests a medication trial to see if that will help his focus, I am fine with the trial, b/c I know that if it changes my sweet, loving, funny boy, I will discontinue the medication. I am just really feeling overwhelmed with all the information. I am so happy to have found your blog.

    Thank you for all comments and suggestions, ideas…. etc.

  169. Caroline Says:

    Hi,
    my son is almost 3 years old , i am pushing on diagnosis in my state Illinois it takes a year to schedule appointment . Though i am pretty sure that my son is on the spectrum as he is significantly speech delayed he has no words what so ever he kind of taps his hands on the walls or the windows or the coffee table , he has some routines like he never want to walk without his shoes on , resistant when i try to put him in a friends car . He has very good eye contact he is happy and cheerful he looks at other kids when they play and smiles , but lacking language keeps him apart , he had early intervention since his second birthday the only progress he made is transition and learned to play with toys . I really want more help i don’t know how to get it . I am pregnant nowand i am stressed
    out for his future , will he ever talk ? Will he ever be a functional members in society ? I am scared to death that my other new baby would be the same . I will kill my self thinking and overthinking . I moved from Egypt a year ago and i have no family here to support me even friends are hard to talk to them about what i am going through , my husband has two jobs full time i only see him going to sleep and going to work . Please tell me how to seek help and if anyone had experience with similar situation please help . Thanks a lot

  170. Caroline Says:

    Also i forgot to say resists potty training , rarely looks when i call his name . Can’t follow simple directions . Doesn’t imitate at all.

  171. Lorrie Says:

    Dear Bernard, I am so thankful for your sharing your life experiences with Eli. I have been raising my grandson, Trent, since Nov. 2012. At the age of 3 Trent was diagnosed with PDD-NOS. Now, with school, and the many challenges Trent is facing with being misunderstood, the true challenge is on! The problem for our children is the lack of understanding, and knowledge by others. Trent came home from school yesterday with a test that he scored 100% on, and a behavior referral. I had to go cry for a few minutes. Being able to see through your site that Trent and I are not alone has given me the extra strength that I need to move forward in a positive way. Reading the many posts here, confirms for me that I am not crazy, and that my grandson really has no ill intent towards others. I am so happy to find you, and your many friends here, and can use all the help that I can get. thank you all so much!

  172. nadine Says:

    my 26 mo boy has just been diagnosed PDD NOS. I am totally shocked and in denial phases. I always knew he is a little slow in the speech area and and has a little lack of imitating others. We are a very small family, ? can say we are more reserved. He hasn’t consistent stimuli with others.He has always been funny laughing. He shows his anger or resentment. He understands teasing and he teases us. he even starts his made up games with his father and me, has no problem with eye contact with us. but when it comes to strangers he prefers not to make an eye contact. As he turned 2 he has really improved.He began to say words, follows complicated instructions and has more social interaction with other kids. Mostly, he prefers one to one interaction with other kids because he has never seen otherwise. He began to imitate us much much better. His neuro pedagogue said he is four months behind. I am very sceptical about the diagnosis because 4 month gap is not very huge. and this gap is in speech area. and he started to meet other expectations like imitating, following instructions without any help. he sings songs babbling, can make more and more sounds everyday. aren’t environmental factors important? I must add until he turned 2 he was constantly exposed to other languages. and this is a setback in language area. Am I really making up excuses about him or should I consult an another doctor? I’m a very mixed up mum

  173. Amanda Says:

    Hello everyone! My son was born 9 weeks early but met all of his milestones except speech. We were lucky because he automatically qualified for early intervention services through the AEA. He is now 3 and attends half day preschool. I had a baby in May and he started showing more behaviors….so I started taking him to play therapy. He has been there 4 times and the therapist wants him tested. She said he is most likely borderline PDD. We haven’t had him evaluated yet. Still waiting for an opening. My question…..does anyone else struggle with their child sleeping? He wakes up every single night and then will wake up really early. He used to be such a great sleeper! Thanks in advance for the support and help!

  174. Tracy Says:

    Suzanne,
    Early Intervention is a loose term. There are many different kinds of therapies implemented at various Early Intervention programs. Some use ABA or VBA, some use developmental approaches. And within each bucket, there is a HUGE range for how they get implemented. I can relate to your story. I brought my son to an EI center part time (20-25 hours a week) and had a similar experience. They would tell of his accomplishments that were things he already knew. But in order to count as “mastered” he would have to get it a certain amount of times in a row over a certain amount of days. Needless to say, it was boring for my son, so he wouldn’t always attend in the way they wanted and wouldn’t get credit for mastering. I started “observing” at the center for at least an hour each day and boy was that an eye opener. I know you are probably busy, working, planning, etc. But I would highly advise you to get in there and observe and see how they are doing things. I was not happy with the minimal goals set and the way they were trying to teach my son and spent a great deal of time and energy shaping more aggressive goals and a new approach for my son. If your son is transitioning to pre-k or kindergarten or school soon, I would recommend working with him to create experiences that focus more on the developmental milestones and creating a connection with each other. Joint attention, Gaze shifting, natural eye contact, perspective taking, social thinking, etc. Slow down, focus on the process and not the outcome. Start using Declarative Language (statements) instead of Imperative Language (questions) and watch what happens! My son really opened up to this. But definitely get in there and observe and provide feedback or pull him out if it’s not what’s best for your child. Best Wishes to you and your son.
    Tracy

  175. Matis Says:

    I have a question for anyone who might know. My just turned 6-year old son was diagnosed with PPD-NOS about a year and half ago. He speaks much better than he used to, but he still has a problem answering pretty simple questions. We don’t know if the problem is more related to word retrieval or comprehension. We know he understands all the words that are being used in the sentence. We could try to get him speech therapy, but if the problem is more one of comprehension, I am not sure how much speech therapy would help. We see the same problem when reading to him a simple story and asking simple questions. Is there any way to get him tested to know if the problem is more word retrieval or comprehension?

  176. Leah Says:

    Hi there,

    I search for answers to help my son and came across your website. Some days I am at a complete loss, some days I think I am just a paranoid parent. My son who is almost 3 was diagnosed at 18 mo with Sensory Processing Disorder and has received OT services since then. Some of his issues have resolved (sensory seeking behaviors) but some have become worse (daily functioning like getting ready, getting dressed, brushing his teeth, changing clothes, etc) which can get to the point where I have to hold him down on the potty to use it, hold him down to brush his teeth or get dressed and change clothes. It makes like really hard when I have to be someonewhere at a certain time. He is extremely mean to his little brother, scratching him to the point he now has scars on his face, poking his eyes, pushing him and of course he rarely will share anythng with him. If he is in a good mood he might give him a toy that he doesnt play with. I cannot buy them anything to share even though they are only 18 months apart and could really share toys. He also has a hard time in busy, loud places like restaurants, parties, family gatherings. he is extremely clingy and will not venture off to play like other kids. My husband or I has to be by his side the whole time. There are times that one person will finish eating food at the restaurant and the other will take him outside where he calms down. Same with family gatherings. We have limited having many people over. He rarely will play with kids his own age. He usually wants to just play by himself or with us. He cannot share at all, whether we talk to him about it, positive reinforcement, negative reinforcement, etc. So, kids usually just dont want to play with him. He does ok with older kids and probably because they bend more to what he wants or let him play with what he wants. He goes to a playgroup through EI and does not really play witht he kids there. Although I do wonder if it would be better to put him in a class with neurotypical kiddos so there is more interaction going his way vs. most of these kids that tend to play alone. I worry so much about him socially. I hate to go places sometimes worrrying what will set him off. I cannot usually socialize anyway because he requires so much attention. I had him evaluated about 4 months ago through our university and was told he was too social, making eye contact with the evaluators and playing with them. He was so good that day, doing everything they asked. They said he is not delayed in anything. His speech is great, memory great, physical great. But, his Ot said he was delayed in auditory processing and possibly in motor planning. Lately he covers his ears when something is loud. That is new. He has a new imaginary friend. He loves cars and has so since before he was 2. He knows every cars name on the movie Cars 1 and 2. He loves to play with them, watch the movies, watch cars videos on the ipad. He also loves to read books about almost anything, recently a kids enclyclopedia and national geographic. In spite of all of this he is very funny, can be warm, loving, helpful, thoughtful, fun, insightful. He keeps us laughing and on our toes all the time. He is the center of our universe and we love him dearly. When I read what people say about their PDD or Aspergers kiddos I hear things that remind me of my little guy yet the evaluators said he is not autistic and if he is not now will not be in the future. I do not know how to help him with his daily issues. The intensity seems to be so much more then I have seen in other kiddos. His OT is not the best as she misses probably as many sessions as she sees him. Our EI system seems to be subpar so far.

  177. Llanel Newman Says:

    I actually have some questions and I’m hoping to find some answers here from other parents. In August 2013 my 2 year old daughter was diagnosed with PPD-NOS and she is non-verbal. Since then I struggle to find information and help to know what would be the right treatment for her would be and other type of information that would help me help her improve faster. Right now the only help I am getting is Early Intervention coming to my home for 90 minutes four days out of the week. I don’t believe that is enough and believe se should get a speech therapist and more but they relieve this is the best for her right now. I’m lost looking for help and answers. If any parents have experience with this or children non verbal with PDD-NOS please email me at l.mojica@yahoo.com or look me up through Facebook to contact me.

  178. Jennie Says:

    In response to #121, Christine Perry from Wisconsin, March 15, 2013. I am curious where in WI your child attends school. My child was dx in 2nd grade with ADHD after we insisted the school participate in the evaluation and place more weight on our opinions. Ever since then I have been trying to stick all of his other “round” behaviors into “square” holes. Finally a change in psychiatrists resulted in a re-evaluation at age 17 1/2 years and he is additionally dx with PDD-NOS and generalized anxiety disorder. I fell apart but was so relieved to have something to finally call my child’s condition, and in retrospect am so grateful I didn’t know anything about this dx until 6 months ago. I think it would have made me a complete wreck and not allowed me to enjoy my child’s spontaneity as I have. I don’t know if a child’s IEP is intended to address behavioral issues, although I may be wrong. That is one thing we haven’t had to deal with, my child is usually well mannered (in public). However I have been disappointed w other parts of the IEP, mostly the teacher involvement. I wanted my child to be the most important kid they dealt with everyday and of course, that is not fair or realistic. I recently talked w the Family Services facilitator for our school district (which I didn’t even know we had) and she was very helpful in directing me as my child gets ready to transition out of public school. She also offered to attend his most recent IEP meeting. Please do not let the school make things worse for you and your child. This is an extremely exhausting condition for you and I wish all of you the very best, especially those who feel they are making progress. The fact that most of you have received the dx when your kids are so young really is an advantage in trying to modify their behaviors. Getting a hormonal teenager to change a behavior isn’t much different today than it was when we were all teenagers. Keep asking questions. Try not to get demanding or sassy, it will back fire. The school doesn’t like to invest more time or resources than are necessary. Try cc: the school district psychologist or head of special education or the school board. That should make someone follow up and help you more. It is so hard to not get emotional and the teachers and police don’t live with it 24/7 so they don’t get it. Try and remember, you are doing the best job you can even when it feels like you are failing miserably, and believe it or not, our kids are maturing along the way too. It may not be as we had expected, but things will continue to change…when you absolutely can not believe it is possible.

  179. Dave Says:

    Hi,
    My son 3 years 9 months can talk and express his needs clearly. At times he can even make correct 8-9 words sentence. His problem is that cannot hold on conversation. He includes gibberish in his sentence. Sometimes he just refuses to talk or would not answer back. Otherwise he is very affectionate and does pretend play. The biggest problem is his behavior in school is very different where he refuses to talk at all and does not interact with other kids. We are getting him evaluated by IEP and also planning private language therapy sessions. He has been diagnosed with PDD-NOS. He used to repeat his favorite show dialogues but with constant reminders that has come down. Please advise.

    Thanks!

  180. Rick Says:

    For all those who feel the diagnosis is not accurate , please read below
    http://littlechildren.wordpress.com/2007/11/01/its-not-all-autism/

    This should not be an excuse for not getting diagnosed or continuing with therapies but it should also explain the increase in diagnosis that may not be accurate.

  181. Rick Says:

    Another explanation for really high functioning kids, very nice interview that explains misdiagnosis

  182. Ashley Says:

    Hi I have a 7 yr old son. I took him to a psychiatrist today for the first time. And he wanted me to look up PDD-NOS and ASPEAGERS DISORDER. He thinks he might have this. He already is diagnosed with ADHD, ODD and possibly bipolar. I needed help to find a good website to find symptoms of the PDD-NOS and ASPEAGERS disorder. And about it. And help bout it would be great. Thank you.

  183. Billyc Says:

    Hi. Thank you for starting this amazing blog!
    It is by far the most positive!
    My son 22 months old got diagnosed with ASD/ PDD NOS about a month ago.
    By early intervention here in new york.
    The diagnose came as a shock after all docs in london just before our move put his speech regression down to fluid in the ears.

    I was shocked I grieved I cried I panicked but now I am warrior mum.
    I want to do all I can to get my son mainstreamed as young as possible.
    We will soon start 20 hours of ABA. 2 sessions of OT and 3 sessions of speech a week through EI.

    Some days I think he just needs a push but will catch up. I really think we can help him manage the autism and drive him towards a successful happy life.

    When I search google though there is so much negative stuff in there in terms of prognosis. Children getting worse with age etc.
    He is too young to make any predictions.

    This blog is so amazing. Its been a great source of hope.
    I am all for getting him services and working with him. But most googled parental experiences just crush my hopes and demotivate me sometimes.

    I would like to hear positive stories. My son doesn’t talk. He had a few words but lost them. What tips on speech therapy can you give me to get him talking?

    He plays he’s easygoing. No tantrums at all. Poor eye contact and low social skills are worrying. But he is learning when taught every day.

    I am geared up to fight thus head on. But need some realistic expectations maybe?

  184. Siobhan Says:

    Hi BillyC ~

    My son was diagnosed with PDD-NOS when he was 4 we too where crushed and it was hard to accept. Since then (he’s now 6 1/2) I have nothing but positive things to share with you.
    He started off in a structured class with 5 other boys on the spectrum, all of them where non-verbal except for my son. Unfortunately he started to mimic their behaviors so they moved him to a special education preschool class and he started to blossom. We learned so much through he teacher and how to calm him when he was stressed, I still think we learn something new everyday. He went on to mainstream kindergarten with a 1 to 1 aide. He did so great that they removed his aide after the Christmas break, it scared me but I think at times we need to let go and see what are kids can do. We did try ABA but my son was not very receptive to it, it made him worse in some ways. So always listen to your gut on what works for your son. I thought we had to do every therapy in the book for him but it’s not the case. I do push him to try new things and just know when to back off. The main thing to always remember is they are still children no matter what their diagnoses is. For speech just be very repetitive in everything you say, like when handing them a cookie say cookie, “here’s a cookie” “yummy cookie” Like tell them everything you are doing as it does eventually click for them. There are some DVD’s from the early 90’s that are really good called “Baby talk” many parents I have spoken to have had great results. Good luck to you and your son and don’t lose hope if something doesn’t work just keep trying different things. My son is going into mainstream 1st grade this fall and we are so excited for him. He will still have pull out therapies through the school but he continues to grow beyond what we expected. His social skills are also lacking but they are 100% better than he was at age 4, he has learned to mimic behaviors of his peers and it helps him navigate the social world. Your son is much younger than my son when he was diagnosed and that is a great thing the early you start the better the outcome for him. Just keep supporting your son and most of all loving him. He will improve and show you what he can do. Big hugs to you and your family.

  185. Edward Says:

    Bernard, thank you so much for this. First of all, i should mention im from Venezuela, as you might know this is a struggling country, everything its difficult to find… even toilet paper. That being said, i should mention its not hard to get medicines or services for my PDD NOS son, its more or less cheap, i mean for example i pay like 8-10 USD each session, we do OT, behaviorial therapy, PT, neurologist, psichytrist sessions and speech therapy, and he’s doing great, he’s improving a lot, he writes now (only his name), he knows ABC’s spanish and english, numbers spanish and english, shapes, colors, among others, its not hard to get (services) and i dont have to fight witn any system to get it, BUT and this is a big BUT, i also know there’s gotta be the best specialist in USA, i am willing to go there and stay there for a couple of months to see if there’s any sudden and quick improvement, more than already is. I mean, is there some kind of organization or clinic who can provide us the best treatment ever? do you know something or someone who can treat foreigners? i’ve been told Toronto is the best place to treat PDD, do you know something about this?
    thank you in advanced.

Leave a Reply

preload preload preload
%d bloggers like this: