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So My Kid Grew Out of Autism? Part III – My Concerns

My concern here is this—

I would rather the center say Yes, to his autism diagnosis and he get help—speech, OT, and whatever other services available and him be able to grow in leaps and bounds and be ready for school when the time comes, than they say No, and him get no services at all. You see what if we ARE wrong, well then his speech and social skills will just be improved through his services, BUT what if I am right? I have seen this happen with my oldest.

Aspie Teen was very social with adults at this age, his difficulties really began when he his 4K preschool. That is where is social interaction shut down, the demand outweighed his social capabilities and he spend all day under a desk, or hiding in a corner, or locked in the bathroom until we had to remove him from the school. For Aspie Teen things just continually went downhill from there—and he received no help! I fear this is where is this heading to, if we continue to find those who put ASD children inside of a little box, seeing them as all looking the same, and when they look slightly different they insist they don’t fit the bill.

Another issue here is that I was shocked at the findings. I have spent the past year getting used to the idea, researching and observing, and I am truly shocked at these “findings.” It has seriously rattled me, and I feel all the anger and frustration I did as a child. I was social; I was verbal; I appeared to blend it (sometimes), and yes, I could have days—even now—where you would not pick me out to be autistic. I suffered in silence, and had no help. I fear for my child.

Instead of joy at their “news” I feel panic, fear, anger, and unease. This worries me, and I am not sure what to do from here. I suppose I can take the wait and see approach, and then when his demands outweigh his capabilities have him evaluated again, but it concerns me that the evaluation takes place in one day, with a one-on-one adult in play-mode—this is the ideal situation for an ASD kid! Observations over time and in different social situations, I believe, are necessary least many of us get missed!

RECAP

Nine months ago, the Tot received two tentative autism diagnoses, and a severe repetitive expressive speech delay diagnosis. After an evaluation this past Friday it was found that he no longer meets the criteria for autism. Cause for concern?

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Jeannie Davide-Rivera

Jeannie is an award-winning author, the Answers.com Autism Category Expert, contributes to Autism Parenting Magazine, and the Thinking Person's Guide to Autism. She lives in New York with her husband and four sons, on the autism spectrum.

12 Comments:

  1. It so nice to hear exactly the same story. Our son at 2, very obviously had autism. He was diagnosed. At 3 he had massively improved and has now lost his diagnosis (also after a 2hr 1:1 session with Psychologist). We feel tricked, as thought people have missed the point.Has he really lost his autism, am i the only one who see the difference in him from other kids? why doesn’t he speak like his little sister?!?! can’t anyone else see how different he is socially? i am almost at giving up point. Is it even worth fighting for? does it even matter?all his nursery teachers say there’s nothing wrong, so he must be doing really good right?

    • I hate those quick 1:1 evaluations because it shows just how much people DO NOT UNDERSTAND autism. Since this post, my son did receive a proper diagnosis through the school district evaluation process. I was impressed how thorough the evaluation. The Tot was screened by three different school psychologists, who specialized in autism spectrum disorders, AND, and I believe this is a critical component, observed by these psychologist is three different settings–at daycare, during evaluations, AND at home! There is no way to even get a “snapshot” of a child during a two-hour 1:1 evaluation, THESE ARE THE KINDS OF EVALUATIONS WITHIN WHICH OUR CHILDREN EXCEL! He also, as part of this process, had a speech, occupational, and cognitive evaluations. It was incredibly thorough, and as a result diagnosed with an autism spectrum disorder, PDD-NOS (Although that is from the previous evaluation criteria still in effect in the school system). The Tot began school (public school) a week past his third birthday as a result in a self-contained 3K autism class. He will likely be mainstreamed in 4K or 5K. Since beginning the program, he has made progress in leaps and bounds, for which, we are so grateful. So to answer your question, does it really matter, I would say and unequivocal YES! You are his Mom, and YOU KNOW BEST! Find the evaluators who will truly listen to you and don’t give up! I can say with a absolute certainty, because I myself am autistic, that children do not “grow-out” of autism. Symptoms may change, progress and regress throughout our lifetimes, exhibit differently, or even be camouflaged for a while, but it is still a part of us. Better to have the services available and not need them, than to need them and not get them! Best of luck, and keep me posted!
      Jeannie

  2. I so know how you feel….I am going through almost the SAME thing. He liked the guy we went and talked to (for 20 minutes!!) and so they said Disruptive Behavior Disorder. I feel this is bull…..I know he is not a stand in the corner spin in circles flapping his arms all day kinda kid but he does do a lot of the things that show signs of Aspie. It is frustrating that they wont listen to me. I think my oldest has issues as well I just didn’t know what to watch for back then…and I am really not sure about myself!

  3. the “suffering in silence” factor is huge, for all of the reasons you indicate: it’s just far too easy to struggle, then struggle some more, yet go without any of the help and support that is needed. in school settings, people tend to just go with what they see…and they can miss all of the difficulties that aren’t visible. again, you describe all of this perfectly, thx for this post even though i know it’s a very painful topic.

  4. 🙁 this is not good. not cool. 🙁
    i can be capably “nt” with one on one too. which is why i surprised the lady who tested me. but she was smart: she still saw enough of the autism criteria to diagnose me.
    NOW, could this have anything to do with the “new guidelines” ?

  5. I am so sorry that you are going through this – we have been exactly where you are right now and it is the worst feeling EVER. Little Miss’s ADOS was so inconclusive, it was almost funny. My mom had actually been playing birthday party and baby dolls with her since she could sit up on her own, so the results of those particular scenarios were totally scripted beforehand. We were so SURE and we walked away from one of the best hospitals in Cleveland with no Dx.

    My advice is to trust your gut. We went to another doctor about a year later. After meeting Little Miss, she threw out the ADOS on the spot. We walked away with (finally) the correct Dx.

    Unfortunately, even with the correct Dx in hand, we are constantly challenged. We actually were sent back to the diagnosing doctor by our school district this year to confirm… Everyone looks at Little Miss and says “she’s just too social.” And yes, first impression WILL show that – but after that initial hello and hug, her ability to be social falls apart and she’s as disconnected as ever.

    You should get my email from this post – if you want to talk/rant/whatever, please use it. Trust your gut and best of luck!

  6. Ugh, I understand what you are going through! My daughter is 22 mos. and when early intervention came to evaluate her, she was a totally different kid! She was making lots of eye contact, calm, didn’t stim the whole time they were here, was completely engaged with the analyst thewhole time. She proved advanced in several areas, which of course makes me happy and proud. And only was found significantly delayed in one area, she needs Iibe delayed in two or she doesnt qualify for services. As soon as they left, she started running in circles in the kitchen and shakjng her head over and over and stackingup her playdoh tubs over and over.

    I was so sad, bu not really surprised. My son who is ten now was recently diagnosed with Asperger’s. He was seen for several months by a pediatric psychologist, and who he is still seeing. She was able to see the sublteties of his Asperger’s through the cloud of his sensory seeking tendancies which every other doctor has just been convinced was adhd. She might have a keener eye since he own son is an Aspie. My son has excellent social skills, this is not his major problem area. No one would have been able to tell that he had these challanges as a baby or toddler. We only ever thought he was a very energetic boy.

    My daughter has much clearer signs than my son ever did. But doctors seem focused only on delays. And they seem unconcerned about the possibility of genetic attribution. My father in law is clearly an Aspie, and my brother in law is severely impaired by his, but niether have a diagnosis. My husband isnt diagnosed either, an in most ways, no one would ever know, but he clearly is an ASPIE as well. And as my middle daughter gets older, I see more and more traits in her as well. I know that I live with five individuals on the spectrum. But every one of them is so different in their individual challanges and strengths. It is exhausting just trying to survive most days, we hardly ever get a chance to really enjoy ourselves.

    My sons doctor originally told us that she doesnt see children my baby’s age, but hearing skme of our challanges, she just offerered to try and help. She’s not sur if there is much she can do, but she at least is more open minded, and believes in the subtleties and wide range of Aspergers and autism.

    I feel the way you do. Lets call it autism for now and get them the help they need while they are young, then if they eventually progress out of the diagnosis, fine. At least thier core skills will have been strengthened an they have a much better start. Im so sorry for your angst. It is a terrible place to be…so alone.

  7. A couple thoughts for you: one, the diagnosis criteria was changed recently. Two, his skill may have improved “just enough” to put him outside the (new) curve. When my son was entering preschool on DDD funding, they intentionally waited until the day after he turned 3 to do the testing to assure he didn’t score out (not that it was a real concern. He could only say 5 words at the time.)

    Last year when we finally pursued diagnosis (we’ve always *known* he was ASD, but were always able to meet his needs within the services he received and our own hard work), he barely met criteria for mild/high functioning PDD-NOS, because we’ve worked very hard therapeutically with him. It was just barely enough to get him a 504 plan and some counselling services, but not enough for an IEP. Fighting the system is hard, and some days it doesn’t feel worth it!

  8. Oh man, this makes me want to throw things. I can’t believe they suggested parenting classes. Ugh. That (to me) suggests that they might be working from sort of bias. The whole behavioral/social nonsense feels outdated and far too narrow considering how much we know about the many different ways autism manifests in kids.

    I’m sorry this is the only place available to you. That sucks. Maybe when he’s a bit older you can try to find something through the school system’s early intervention program? What if you conveniently forget this assessment ever took place and just go with your observations and your pediatrician’s comments in seeking services? Actually, I have no idea but I suspect this is only the beginning for the Tot.

  9. I agree with you! I never thought the Desire to be social was the issue, it was the Ability, that was the issue. And one on one is NOT how to test that. Especially with an adult as the other “one” . How could they not take your observations into account? What about recording ( what do you call it now , when we don’t use film or video tape?) him in normal day to day activities, showing his stims and behaviours that cause you concern? I hope you can figure out how to have another assessment done.

    • Hi Chris,

      I am not sure how to get another assessment done in my locale since it took a three hour road trip (each direction) and nine months to get an appointment, but I am going to have to figure something out. Funny you should mention recording because I suggested recording the behavior before we went to the appointment, but really didn’t think it necessary. I was so certain they would “see” what I do, that it never crossed my mind that they would not! (I guess there goes my own aspie mind at work again). But now, I am thinking of doing some video diaries and keeping good records of behaviors and what is going on with the Tot, because I suppose they have to SEE IT TO BELIEVE IT??

      Admittedly, he did not have any meltdowns during the appointment, he was over-stimulated he was happy to be playing with one person! But he did have some temper tantrums, you know the ones that two year olds have when they want their way?? And yes, those are behavioral, he is two and wants what he wants and has a temper when he doesn’t get it, but that is completely different from a meltdown!

      I am going to have to keep my phone here at the ready and hit record every time I see him stimming, and when he is playing alone way away from the other children….its just so frustrating.

  10. Pingback: So My Kid Grew Out of Autism? Part II – The Results | Aspie Writer

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