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Here's an article about the study talked about in your link. Small study, but 18 percent who were diagnosed at age 2 no longer met the criteria at age 4. I really don't believe that those people who met the criteria at age 2 but don't at 4 actually have autism. If they did, they would meet the criteria or show definite differences from their peers later on, even if it is only "coping". I think they did indeed "outgrow" it as their brains matured, or they were misdiagnosed, and what those kids really had was social impairment or some "red flags" for autism, maybe sensory processing problems, developmental delays, or another disorder having similar symptoms, but not real autism.
http://online.wsj.com/news/articles/SB10001424127887323301104578255721887372386

Interesting article
http://www.nytimes.com/2012/02/01/opinion/aspergers-history-of-over-diagnosis.html?_r=0

I'm sure this article made a lot of people mad when it came out and I'm not saying that I agree with everything that is says, but I think it makes some interesting points.

DeeDee I'm not sure if you're misunderstanding what I'm saying or not--I'm not telling her to go to a neuropsych vs. an autism center or what exactly an eval should entail. But I do believe there are poor centers or quacks out there who will diagnose based on superficial characteristics. In my DS's case the neuropsych didn't need to do a more intensive eval because he clearly doesn't have autism based on the inventories, their observations of him, and the "theory of mind" type testing. It wasn't just any one thing that they were looking at (like ruling it out just based on one test), There just wasn't enough evidence of it to even do an in-depth eval. On the rating scale he didn't even come close to being out of the normal range. They probably would have done more if there had been red flags on the other tests, but there weren't. He was social and chatty with everyone there and clearly did not have the social component, but there were other things like the hand flapping (which he does sometimes when excited) and voice that a "quack" might have picked up on and made too big of a deal out of it. I also wasn't taking him in just for autism testing, he had a TBI and issues with motor skills, and it was pretty obvious before he was even seen there that what we were dealing with was DCD and brain trauma possibly exacerbating it, but they looked at autism just to make sure. I think since this is a "spectrum" there is a gray area and there is no consensus among professionals about how to define that and who in the gray area should be diagnosed. A "good" center should be able to do it accurately in an older kid over age 2 or 3 but it's not a hard science. So much is subjective.

It's a very small study, and the design looks to me like it is subject to confirmation bias (they chose their evidence selectively and found what they were looking for). This is not yet convincing to me.

And yes, diagnosis at age 2 has historically been very difficult (and note that several years ago, when those early diagnoses in this study happened, the improved standardized tests that are now in use weren't available, so those *were* subjective early diagnoses.

Last, as the autistic author at the link I posted notes, these studies of "success" in becoming "normal" are typically not asking autistic people how hard it is to be them, or how hard it is to "pass" for normal-- only observing from the outside how successfully someone looks "normal."

There is a powerful anti-autistic bias in those studies, in the sense that they do not really take the experience of autistic people into account. Some who pass do it because they've been well trained to pass, but there remains a cost in effort to keep that up.


Yes, there is a line of thinking in the popular media about how "everyone's a little Aspie." (a term I hate, but that's neither here nor there.)

This article isn't really about "overdiagnosis" per se-- the headline is misleading. It's part of a much larger conversation that pits the parents and caregivers of severely ("classically") autistic people against the Asperger's community (many of whom are able to "pass" or "become normal," ahem, see above.) Some people want to exclude Asperger's from the definition of autism and devote all the resources available to helping the most impaired.

As we see it in our house, having a high IQ is no guarantee that autism won't be a problem. It's been a huge challenge for DS11, making his life really difficult at times, and it will continue to be so.


That is true. The quacks can often be recognized by the setup where the diagnosing doctor also has a cure-all treatment to sell. By contrast, in a typical hospital autism center the diagnosing doctor gets paid whether or not the diagnosis is made, they have no financial stake in treatment, and there are long waiting lists for treatment programs; the incentive is more to be correct in the diagnosis so that the right folks get on the treatment list, since everyone will earn their money regardless.

So what you say is true, BUT there are also lots of practitioners who will see a child who clearly has autism, and say "oh, he's just quirky." Or "oh, he's just gifted/has overexcitabilities." DS11 lost several years of early intervention because of several doctors' failure to diagnose what was very clearly there.

In my family's experience (which is extremely rich and varied around this issue) overdiagnosis is less harmful than underdiagnosis. In the case of overdiagnosis, a *good* therapy team will still base treatment decisions on the actual problems to be solved, so there is relatively little harm. Whereas in the case of underdiagnosis, the child and family get no help whatsoever.

Your characterization of being "slapped" with an autism diagnosis makes it sound like diagnosis is always bad. In our case, it brought much-needed therapeutic help that we had sought for years. Not so much a slap, more like a support.

I am not saying rah-rah, let's diagnose everyone-- but I do think the likelihood of underdiagnosis is greater for gifted kids than that of overdiagnosis, and I think that if parents seek help from reputable professionals who are using evidence-based practices, the risk of harm from seeking diagnostic information is small.


My point is this: there is not "no consensus." There are now standardized instruments (most notably the ADOS) that let you get a handle quantitatively on the behavior presented by the child. Yes, it's a snapshot on that day, and yes, there is still some interpretation, but much less so than there used to be.

Nobody has to get their child diagnosed who doesn't want to, but stigmatizing diagnosis itself as a slap or a problem strikes me as not a very helpful position vis-a-vis parents like ElizabethN whose kids have problems that are not yet well-understood, yet real.

Very well said, DeeDee.

I was cautioned by more than one person about 'labeling' my son during the diagnosis process. Having him properly evaluated and diagnosed has brought nothing but positives to our family. He is now engaged in productive therapies, and receiving necessary supports at school. He's growing and learning amazingly quickly. My only regret is not having him evaluated sooner!

I don't have the background to speak to the autism issues, but agree with DeeDee above, and particularly about working with an autism center that's associated with a children's hospital. I've also found with my kids (and their different needs) that our pediatricians have been able to steer us to competent professionals and away from ideas or places that weren't worth looking into.


There's also one other thought I had when reading the comment (somewhere above) about overdiagnosis at 2 and some children "outgrowing" autism. My dd11 has medical issues that are also found frequently in a sub-group of children with autism, so I read a lot about that specific subset of children when I was trying to find help for her when she was very young (her issues started at around 2 years old). During that time (which was around 10 years ago now, so my "knowledge" is out-of-date, to be sure) - there was a thought that the children who were diagnosed around 2 years old after having a "regression" in development were not really the traditional form of autism but perhaps another form or an entirely different issue. This didn't mean they didn't have autism (or something else in common with each other), but how it played out over their next few years of life was sometimes very different than in children with "classic" autism.

The other thought that comes to mind (to my very un-knowledgable mind, so take it with a big grain of salt!)... interventions and treatment and opportunities for children with autism diagnoses are much wider now than they were when I was a child. Recognition and diagnosis has also most likely improved. When I was a child *MANY* years ago, autism meant a child who was so locked away inside their head that there was very little hope of them ever being functional in the world. I remember it being big news when either a parent or a dr took their child to the ocean for the first time and somehow discovered that what had kept their child so isolated in their own world was that they were exceptionally sensitive to sound. Things like that. Today we understand sensory issues relating to noise perception, touch, etc. So maybe what can look like "overdiagnosis" is really just heightened awareness and knowledge.

Best wishes,

polarbear

We aren't dealing with autism, but fwiw, have had the sam experience re our ds' and dd's challenges. I just would add one thing (also very positive) - the "label" my children have received (and the understanding of what it means) has meant a ton of relief for my children. Before they had a diagnosis, they had internalized that the "it" that was different about them was something inherently their fault or something that they should be magically able to get past since their peers didn't have the same issue. Understanding that they had a particular diagnosis and challenge helped them understand themselves better and helped them regain their self-esteem, which had taken a real hit when they were struggling and none of us understood why.

polarbear

I have a friend with a child in my DS's grade at his school. They were given an autism diagnosis by the school system for their child when he was around 3 and IEP was written. They say that now they can't get rid of it, and they do think that some of the "therapies" that the school has tried have been actually harmful, or at least not productive. The parents are not sure if he really has Asperger's or if he has severe ADHD and they are unable to afford private evaluations.
I'm sorry if you are offended by my saying "slapped with an autism diagnosis". I don't mean to imply that this is a horrific thing that's very negative. But if a child doesn't really have it, then yes, I do think it's a negative thing. No matter what the diagnosis or disorder, it's not a good thing to be labeled with it if you don't actually have it. Obviously if they do have it, then any supports/therapies they can get will be helpful and the younger they are started, the better. And even if a child doesn't really have autism, the supports/therapies MAY be helpful, but the child should be given supports/therapies which are validated by research for the actual disorder that they DO have whenever possible. So if a child really has an expressive language delay, being put into ABA therapy probably isn't going to be helpful and may be harmful. The problem arises when an early diagnosis is given, everyone assumes it is correct, and then it is not reconsidered later on as new evidence arises.

Hi, this is Tom, Elizabeth's DH (at least I hope I'm D :-) ).

Actually, I disagree about his speech fluency. His pronunciation is great. But to me he clearly has a problem getting words out. He will often start trying to say something with a couple of words, and then repeat the first couple of words with pauses many times before he gets the full sentence out. It's like he's trying to gather his thoughts or something and it takes a while. Sometimes it's like he's distracted by other things while trying to make the sentence.

I don't know if that is dyspraxia or not, but I wanted to make the clarification.

The school is not actually allowed to "diagnose" anyone with a disorder. The school's role is only to provide an educational evaluation, which assesses the educational needs only, not the overall picture of what's going on with the child.

It sounds as though in this case the school people overstepped their bounds (saying "diagnosis" where they should not) and/or got it wrong, or the parents have misunderstood the process. At any rate, the parents are members of the IEP team and can request meetings to collect data and/or change the plan.

The way to "get rid of it" is to convene an IEP meeting and change the stated reason for the IEP. One would probably need an outside evaluation to contrast with the school's. If the parents don't like the school's opinion, they are legally entitled to request an independent evaluation at the district's expense. (See Wrightslaw.com for details.)

There is no such thing as a permanent school record for kids this young.


Of course.


If the ABA team is worth its salt, not harmful, because ABA is targeted to meet the actual need (it should not at all be cookie-cutter or inappropriate to the particular child). That, of course, depends on the skill of the implementation.


Right. Pretty much every parent of an unusual child I know is hypervigilant about diagnoses, symptoms, and so on, myself included. And that's not paranoid; it's a sensible response to the reality that our medical system does not offer any kind of safety net for us. It's on us to get it all done.

I am not, FWIW, offended. It's just that I care very much about how these issues are discussed. There is a minefield of misconceptions out there that don't do anyone any good.

My 2 cents.

DeeDee

At the risk of incurring some flames, I gotta agree with this. Once you have an erroneous "label" at least where I am... Everything is viewed through that lens. Even normal behavior is often considered 'pathological' to support the lens. I have seen first-hand and experienced to certain extent what Blackcat cautions about. I do think autism (and ADHD) are dx here VERY EASIIY and I think a lot of learning disorders and anxiety resulting from un-dx learning disorders (like dyslexia, dysgraphia) go completely undiagnosed b/c they are much to quick 'slap' on a misdiagnoses of autism or adhd here. I could be totally wrong but it feels scary that way here. That's why I am really trying hard to get an OBJECTIVE look at my kid. If I were easier going, less intelligent or too busy to bother (or if I desired it), my kid would have PDD-NOS and ADHD dx, no problem. He would have had them years ago. He would never have been look at dysgraphia nor would he have been looked at for EDS. Now I have friends in other states who have children they truly do believe have some type of ASD and they have trouble getting the Dx (though all three did get it eventually). So maybe it is a geographical thing.

Well it feels like it. My kid's record is following him around and I'd love to be freakin' free of it quite honestly. And trust me, atleast around here clinicians are loath to take away dx. They tack new ones on to it readily though.