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Friday, January 18, 2013

Growing out of autism?

This article is one of many that have been in the news lately about a study showing that some children grow out of autism, lose the diagnosis.  It's a study in the early stages, as they haven't yet talked about what was done differently, if anything, with those children, or some ways the children might have been different from other autistic kids from the start.  But it certainly caught my interest.  In some ways, my life is a laboratory for that study. My older son was originally diagnosed as autistic, and now is in no way autistic.  And Janey, of course, is severely autistic and I am pretty sure always will be.

You can't make a study on an example of two kids, but it gives me some hard-won insight and ideas to have lived this.  The study only accepted diagnoses from experts in autism.  Both my kids were diagnosed by fairly well known leaders in the field, so that counts.  But there are huge difference between them, and were from the start.

The big, big, big difference is cognitive ability.  Janey is intellectually disabled.  There is a question in my mind whether she always was, and she did lose skills at age 3, but in some ways, she was always delayed.  She didn't walk until she was 2.  Her speech, although she had a lot of it before 3, didn't start as early as many kids, and wasn't as clear to others as some kids.  She even was/is delayed in physical ways---she didn't get teeth until after her first birthday.  William was never cognitively delayed.  He spoke at an incredibly early age, and he was obviously quite a bright kid from the start.  I would guess that when the study is further processed, the big division will be between kids with retardation and kids without it.

Another distinction, one I don't much like to think about, is that William showed signs of autism early, and Janey didn't.  It was not that William had intensive ABA (they didn't do that much back then), but we were aware he was potentially autistic much earlier than Janey.  We may have used that to react differently to him. I don't think so, but it's possible.  Janey blindsided us at age 3.  She has early intervention, but it was only for her walking delays.  It's kind of ironic that her not showing her autistic traits earlier might have lead to a huge difference in outcome, and I don't like to think that, and don't really believe it, but it's possible, I guess.

The truth of the matter here is that I don't think William was ever really autistic, despite being diagnosed by an expert.  I think he had a collection of traits that made him appear autistic.  Part of that is just personality.  It's the same personality that now leads him to study for 6 or 8 hours a night and get near perfect grades, the same personality that makes him a guitar whiz.  He's a hard worker, and he gets very involved in what he loves doing.  That showed up early.  He loved maps, trains, Thomas the Tank Engine, sinks, stoves---he would get VERY into those things!  And as you grow up, having the ability to get very into things isn't bad.  It is what makes experts, professors.  It's probably what has resulted in most all great inventions and steps forward in history.  I think autism is something that shouldn't in some ways be diagnosed until around age 7.  Many things can mimic autism early on, and I am in no way saying they shouldn't get a full court treatment.  They should.  But do they have to be called autism that early?  By the time a child is 7 or 8, it will be obvious who is autistic and who isn't.  Janey is autistic.  There is zero doubt there.  William isn't.  There is zero doubt there too.

The other message I want to put out there is that I didn't do anything magical to make William not autistic.  I didn't put him on any kind of special diet, he didn't get any ABA at all, I didn't do floor time or anything like that.  I gave him a lot of attention, he had an IEP at school until 5th grade, he had some great teachers and therapists, but he also just lived his life.  He was the one that changed.  I didn't make him change.  That sends me a message about Janey.  I am doing the best I can for her, but I don't think there is some magical key that will unlock her.

I look forward very much to following this study as more information comes out.


Becca said...

I was hoping you'd comment on is study. I agree with you that the autism diagnosis should maybe come later. I get that it's pushed early to try to get kids the help they need as soon as possible, but I think the net catches many children who have autistic traits but not autism. Kids should be able to get the help they need without being misdiagnosed.

I am 99% certain Jacob would have been diagnosed with autism had we had him tested early. He had almost no meaningful interaction with any of us, he didn't play with toys in a typical fashion, he didn't use sounds or words to communicate, didn't wave, point, etc. He had his EI eval at 15 months and everybody said autism, get him tested.

And actually we might have, if the intake nurse at Seattle Children's Autism center hadn't been a complete B and made me pull back and reevaluate. He was already getting services. In the year we waited he changed dramatically

We did change his diet (he has allergies and was always sick) and he did get early intervention, but I don't think he was ever autistic. He's still quirky, still intensely focuses on his interests - my husband has ADD and hyper-focuses as well, still a bit socially behind, but he's not autistic. Would he have been one of these "recovered" kids?

I think the cognitive ability aspect is interesting - that's one of the only areas where J wasn't behind when he was evaluated.

Anyway, sorry for the long comment. I found is article fascinating and I am looking forward to following it too.

Suzanne said...

Jacob sounds a lot like William! It's funny how those things work out---the nurse being a jerk and that turning out the way it did! I do wonder how many of the "recovered" kids are like our kids. I've thought that for a long time---I understand very well how people want to get services early, and how the system is set up so you need a diagnosis, but I am quite sure the rate of overdiagnosis is pretty high. And people might say---well, that's harmless, if they get the help they need, but I don't think it totally is. William VERY MUCH doesn't like to think that he ever was different. I think it affects the kids themselves, as they get older. I wish kids could just get any help they need without it having to be connected to a label, until they are older enough so it's fairly clear the label will stick. It's great to hear your thoughts of this--thanks!

Jess said...

I did some reading a while back about mosaic down syndrome. From what I remember it sounds like what you said: growing out of the disability. It sounds wonderful and I suppose it's possible for some. But I wonder if these kids actually grow out of the disability or if they just never had it. I used to wish and hope Ciena would magically be cured with time. But that's silly. Life is what it is.

Sophie's Trains said...

Autism is a puzzle for sure. I look at my husband's family, his brothers... If they were growing up here today, they'd probably get flagged for autism, certainly one of them (according to mom didn't play with kids till 4, just stood alone "and stared"). He is fine now, a bit quirky perhaps, but no one could call him autistic for sure. I wonder what really is going on. Why some do appear to "grow out of it". You hear stories all the time how someone didn't talk till 5, or was "a really weird kid" or was obsessed with something.. And then something clicked in their brain or something and they kind of snapped out of it.
Some of it is wrong, premature diagnosis for sure. Some of it is high functioning autism which masks the challenges they still are coping with. But I do wonder about those other kids. Those kids who stood on the edge of the autism cliff.. And managed to step back.

Suzanne said...

It does seem like a certain percentage of kids with true autism do somehow just outgrow it. I've read so many old articles about doctors telling parents just to give their children time, and then the odd kids all of a sudden one day were just fine. I think that is why there are people so devoted to certain "cures", because they tried them, and at the same time, their child outgrew the autism, and no one can really say if there was a cause/effect or if it just happened and would have anyway. I can certainly understand why they would want to share what they think worked for their child.

My favorite autism book so far, Making Sense of Autistic Spectrum Disorders, by James Coplan, talked some about the kids that just lose the diagnosis, and says basically always it's kids without cognitive disabilities for which it happens, and that is something I think this study will show, and I think that might be almost a help for parents of kids like my Janey to hear---that it's not that I did something badly wrong so she didn't "recover", but that her intellectual deficits had a lot to do with that. It's kind of cold comfort, I do have to admit!

wellymom4 said...

I saw this article also. Here are my two cents.. In my daughters case it almost appears she has outgrown certain traits. So much so, the school psychologist says she doesn't have Aspergers. And we have to fight for her to still have an IEP. Isabella didn't speak much until she was 3 or 4. She walked on tip toes and flapped her arms. She had raging temper tantrums that lasted hours with head banging and repeating the same words over and over again literally for hours. She also didn't play with other kids. First diagnosed with sensory processing disorder and a 2 year delay w/gross motor skills. Lots of speech and occupational therapy. Then at 5 diagnosed as early on-set bipolar, then adhd. Meds and more meds. Finally at age 9 she was tying things around her neck and trying to jump out windows. That led her to a 2 week stay at the Spring Harbor hospital. They were great and got us into a neuro-psychiatrist who specializes in Autism. She diagnosed Bella w/Aspergers. We had lots of therapy after that. In home therapy for 15 hours a week teaching social skills and coping skills did wonders. At age 15 she is not the same kid that she once was. We still have some of the same traits...head banging, not social, and communicating is hard. She "looked" autistic when she was 8. She was that kid you see at the store and you just know something isn't right. Now she sorta blends in with the others. I think the hardest part for her is she feels different than other teen girls. She wants friends, but can't seem to make the effort to find them. Hormones have been hell, that's for sure. I wouldn't say she out grew Autism, but she evolved if that makes any sense.
I'm just curious, was William ever diagnosed with Aspergers?