My sons 1 year re-eval was this morning...

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I expected to hear that last years diagnosis of pdd-nos still stand. However, we were told that he no longer meets criteria for an autism diagnosis..

His speech has just come so far, his social skills are picking up and he really no longer hand flaps which was the one marker we had for repetitive behavior. The same panel of pediatric neurologists from Johns Hopkins evaluated him, tested him..and he really showed his true colors. He had moments of whining where he didn't want to do something but overall engaged beautifully.

I wanted to post this here because it might provide some comfort to those of you who have a child like mine who has some traits of autism but not all. One year can really make a huge difference in things....with more language comes more of everything. Last year at this time we had a lot of echolalia and shorts sentences...now we have mini conversations and he can tell us what is going on in his head.

If there are any questions i'd be happy to answer them. OH one important thing to note..he did get an ADHD diagnosis. The doctor told me that many many children are labeled on the spectrum at an early age when its really language delay and ADHD....it happens more often than you might think. I would have loved to have known that last year, lol!

Thanks for reading!

And the other way around, actually.

Remember that even if your child is not AS, he might have some AS traits, and there may be times adjusting your parenting accordingly will be needed. Unfortunately, as I'm discovering with my mostly NT daughter, with a "some AS traits" child you never know for sure which it is: the NT child playing AS to get a result, or the AS child needing you to see the AS trait. Lol, sorry, sounds like I'm trying to rain on your parade ... really, not, but you do need to be aware.

How old is your son? Did you do anything to help him stop the hand flapping, or did he just decide to do it on his own? He sounds sort of like my son who is almost 5 diagnosed PDD-NOS/possible Asperger's. My son's language skills continue to progress, but the social skills with his peers are not really progressing. My son although not diagnosed with ADHD by the doctor, the school evaluated him and believes he has it. I do too since he has difficulty focusing and staying on task unless it is something he wants to do.
Did your doctor recommend anything to address the ADHD?

What types of therapies or treatments did you do for him?

Anyway, that is awesome news. It does give me hope to keep working with my son!

Yes, i'm aware of the other way around...believe me, i've researched, read up and educated myself on everything autism throughout the years. And just because his diagnosis was dropped doesn't mean there won't be issues. We are very keenly aware of this. I have to say, your response made me feel badly and it DID feel like raining on my parade. This is prob why i hardly ever post on these sites...i received wonderful news today and have seen my child come so so far and have felt for a long time that it wasn't autism..and the first response to my post to beware that it still might be.
Not really what i needed to here. According to the top pediatric neurologists at hopkins it isn't autism. And if it ends up that it really is, we'll get by.

angelbear...my son is 3.5. The flapping stopped when he was about 2.5 although rarely it comes out when super super excited. He'll even see he is doing it and go "no flappin'" and stop, lol.


We never did a special diet. All we do is probiotics, vitamins and try to keep the diet as healthy as possible. When we attacked his extreme constipation his behavior really got better. He got speech therapy since 19 months and some OT but he hasn't had OT in over a year. We didn't do much except get him in a preschool that addressed special needs 3x/week.

As for ADHD therapies...well we will know more after i research, i have to still absorb this all, lol. They said our choices are behavorial therapy or medication or both.

Thanks for the kind words. It is appreciated. We are still going to have a tougher road with johnny, sitting still is just very hard for him, lol. But i do have faith it'll all be ok!

That is great! It sounds like he will continue to progress. My son flapped his hands from 1 to 2 yrs old. Then he stopped doing it pretty much until he started pre-k at 3. He really started doing it then and hasn't stopped. It is just frustrating because he knows he does it too, but just can't seem to keep it under control. I am hoping in time that it will subside again.

As far as the ADHD thing, I am torn about what to do. My husband is anti-meds, but I am just so afraid that my son is just going to fall behind because of it. He seems so bright, but just has difficulty learning and focusing, so I just feel that he will just continue to fall further and further behind. He has been in special needs pre-k for 2 yrs, and he will be in special needs kindergarten next year. They will try to work with him to try to see what areas he can be mainstreamed in.

Just keep going, and like you said whatever it is, you will keep moving forward. I just think boys are a challenge----I know there are some girls that are too, but overall, it seems like boys are harder!

Why did you post here then?
Sorry if some people here dont share your point of view. To me its insulting for you to tell us that we can be comforted in the fact that it might not be that horrible Autism thing???? And gosh, how will you get by if it is AUTISM!! ??? My kids and I dont have Cancer we have Autism. Its good that you are happy with the wonderful Johns Hopkins docs and your ADHD diagnosis. Im happy my kids have Autism and Aspergers...hows that for a parade?

Obviously, not everyone's opinion of how autism has affected their lives is the same. Many posters here are happy to see their children improve, and are just trying to help them be able to function better in society. It was nice to see someone post something that was very positive for her child, and I am just shocked that she got attacked. I thought we were here to support and encourage, not tear down. I would say that most of us love and accept our children in spite of whatever diagnosis they have, but just want to help them make sense of this world. I personally, was happy to see that her son is doing well.

I was fine with the first post....I ignored it for the most part. It was the second post that caused me to spew....you know, the one I quoted?

We are all entitled to be annoyed by posts, I guess I am just not sure what it is that is so upsetting about her being happy that her son came off the spectrum. Maybe it is easier for you to deal with since you know how your son's brains operate. For some of us, it is a struggle to figure it out so that we can help them.

I posted here because I was very happy with how his eval went, I cried in my car on the ride home for most of it. I do NOT and have never thought of autism as this "awful thing". And there is this part of me that doesn't completely believe is isn't on the spectrum anymore....I mean people don't take their kids in for autism evals everyday because they just feel like it. I know that my son was on the spectrum...he just currently isn't showing enough symptoms to be diagnosed.

I posted my story as maybe a piece of hope to other parents...NOT to ever make anyone feel badly that their child has autism. But to help those, that like me, have been told their child was on the spectrum but to not really feel that it is the case and then to have confirmation that YES! It is something other than autism....my child is dealing with a neurological problem...I know he has horrible concentration but its getting better...I know he likes to do what he likes to do and sometimes its hard to transition him...i know that if i walked out of hopkins yesterday with a PDD-NOS diagnosis i would have been fine. I would have loved him and cared for him and felt the exact same way about him that i always have and always will. Because he is the sunshine in my life...and children with autism are wonderful, smart and amazing people and autism is still very very misunderstood. I know that.

I didn't understand that the the response I got to my happy feelings and the need to share our story was hit with a reply of "well he could still very much be more AS than NT". Why was that reply needed?? I didn't come on here and say "he was not diagnosed with autism but i have a question about the possibility of a misdiagnosis". It certainly was a "rain on my parade" type of post and to ME i don't get that. Every positive story I've ever read (positive meaning ANYTHING good a parent has to relay) I've always smiled at, cheered on the poster and told them how happy i was. (this is on the other pdd/autism board i post on). I've never countered back with what still could be wrong. Just not what people need to hear sometimes.

I hope i've clarified my points. And it made me so so sad to think that anyone would think i have a horrible awful view of autism. I don't. But there is NOTHING wrong with being happy that a team of doctors told me that my son has come so far. NO MATTER what diagnosis is given. Aren't we all here to do the best for our kids and to help them function to the best of their abilities??

one more thing...liloleme....WHY are you so angry at what i wrote? I don't understand it. And you falsely posted words that i never used such as "this horrible autism thing". I don't understand. Is there really something wrong with a mom writing about her kids gains? And how they are considered no longer on the spectrum?

And i'm sorry but I KNOW full well that many parents share my point of view in being happy when their kid comes so far. If everyone in the world was completely fine with their child having autism, we all wouldn't read about it all the time...obsess over it...wake up and think, breathe and eat autism. I know I have. I know this has consumed my life for the last 2 years while we sat here wondering how our kid could seem so typical at times, yet had these obvious impairments that we had NO answers for. Autism is something that there really aren't answers for. Genetic? Environmental? Vaccines? Something I did in my pregnancy? Something that happened while he was a baby that i was unaware of? I know i've looked for answers and been so discouraged like all of us here (or a lot of us).

He will continue to have his issues. I know this. He may be rediagnosed one day as on the spectrum. And like I wrote earlier i'll be just fine. Because he is Johnny..and no one else and I love everything about him. Life has not been easy nor will it prob be for a while, but its not fair to sum up someone by reading one post..and it was a happy post that I wanted to share. Thats all. I will continue to read about and research autism and i'll continue to do everything i always have. It will always be a part of who johnny is.

These sort of statements are what make me angry! If Autism was not such a horrible thing for you why would you "obsess over it" "wake up and think, breathe and eat autism?" Thats what people do when their child has a fatal disease. The reason Im angry is that you and all these other people like you view and talk about autism as though it is the end of the world for you and you breed intolerance and ignorance.
I will be happy for your son that he made gains....NOT for you, for him. Im happy that my daughter has learned to speak....because she was very frustrated but I would have been just as happy if she was happy not speaking or learned some other mode of communication. It sounds to me as if your son already had language. My daughter did not speak until she was 3, I did not cry about it, or obsess over it. She went to therapy and I enjoyed her....no obsessing!
Im also angry that you are teaching your son by your actions and your words that Autism is a bad thing and that you thought there was something "wrong" with him and that now you are happy that he is deemed "normal".
I spent my whole life being told that there was something wrong with me. I was weird, stupid, ret*d, learning disabled.....Now that I know I have autism and I have educated myself I know that there is nothing "wrong" with me. Actually I have skills and insight that a lot of people do not have because of my autism. Im different than some people, and intolerance of this is a VERY ugly thing. I wish you would educate yourself and stop listening to the pro cure people. There is NO CURE for Autism, you can gain skills as a child just like any typical child and you can even teach an old dog new tricks but it does not go away.
Now do you understand????

That's extremely interesting to me. My youngest was dx'd with PDD-NOS and ADHD at about 5. He didn't have an extensive workup but the Dr who was seeing him knew him well and works with kids in the spectrum a lot. We needed a dx to get some accomodations at school as he was having major melt downs and couldn't do certain things that are required. The dx got him accomodation to wait and do those things later when he was ready developmentally. He had good receptive language skills and would respond to verbal cues but he wasn't speaking intelligibly at all, maybe the occasional NO but that's about it. He made sound but appeared to be using his own unique language (he'd use the same sounds in the same situations, but they weren't any language anybody else could understand). As he got older he seemed to be speaking English morebut was grossly mispronouncing things. His older brothers both have AS and ADHD, so PDD-NOS seemed obvious.

In Kindergarten we moved to a good school disctrict with more services available and he got into good quality speech therapy. The therapist was shocked at how rapidly he progressed. The sounds he was mispronouncing weren't the usual difficult sounds. He was getting the hard stuff right but stumbling over the easier sounds. In a few months he was understandable but needed work. By the end of the school year he was on par with his peers but certainly not the clearest kid in the class. They kept him in speech the next year more to make sure he didn't regress, but after a few months began the paperwork to graduate him from the program.

By second grade he was showing signs of prodigious intelligence. He always got the teachers lessons the first time and would politely correct her if she made a mistake in class (thankfully she appreciated it). He was tested for the gifted program and easily made the standards for it. By the end of that school year he had developed an interest in Calculus. Third grade was a tough year because his teacher didn't appreciate having a student who knew her content better than she did, but he survived it. We had him tested to see where he is intelligence wise and developmentally and those results are allowing us to get him special accomodations at school to do more advanced work than his peers, even his peers in the gifted program. According to his test results he should be doing 8th grade work, not bad for a 3rd grader.

I've been absolutely baffled about how he could go from being a non-verbal Autie to where he is now. I guess we don't really need to know, we just need to do our best with him as he is now, but it's a puzzle I'd love to solve.

I am just curious JohnJamesmom and Kiley---
Did either of your son's have "special interests"? My son was diagnosed as PDD-NOS when he was 2.5....-at the time of the diagnosis, he did not seem to have any special interests. Shortly after that, he became obsessed with car makes and models. This is causing me to wonder if he is leaning more toward Asperger's. I know it is all autism, but I am just trying to learn more about my son. He is almost 5 now.

Read every Temple Grandin book you can get your hands on!...and Tony Attwood as well!