“Recovery” from the diagnosis of autism – and then?

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Olsson MB, Westerlund J, Lundström S, Giacobini M, Fernell E, Gillberg C. “Recovery” from the diagnosis of autism – and then? Neuropsychiatric Disease and Treatment. 2015;11:999-1005. doi:10.2147/NDT.S78707.

(NB, the study is published in a sketchy open-access journal, which is why I'm linking to it on PubMed instead, so there is room for doubt about the validity of any peer review. But this is a sufficiently important and under-studied question that I think it's worth looking past that.)

To me this is significant because it shows that even when approaching autism in purely clinical terms, autism still needs to be understood as something other than "meeting diagnostic criteria for ASD." Even if the disability is eliminated (by changes in coping skills, life circumstances or whatever), the autism will still be there.

In other words, those "kids who beat autism" are probably still autistic, and whether or not they officially meet ASD criteria in the future, will likely spend their lives struggling with the same basic problems that all the rest of us do.

It's the same as where homosexuality isn't accepted, you have these camps where gay kids are sent to by their parents to make them straight, in fact, that's exactly how ABA is being used. Except ABA is considered the gold standard of "treatment".

And does it magically make them straight. No of course not. Just like no amount of pretending to be an NT won't magically turn an AS person into an NT.

The rotten fools who support this should die.

They seem to think autism is solely a matter of behaviour. Surely they must wonder what causes the behaviour, but it seems not.
ABA reminds me of this.



Sure you can chain a bear and make it do tricks, but the cost is the natural experience of life.

Ytrewq, thank you for posting this!

Another interesting follow up is Kanner's original study of autistic children. Here is the 1971 article. Kanner noted several times that the autistic participants were being mistreated by their parents. One clearly needed to go to college because he was interested in marketable skills and could memorize things easily. Whenever he improved his mother took him away from the positive influence. Most of them were either still at home or in a home, but seemed to be doing well. Some were in paid or unpaid careers, had learned another language, learned to play an instrument, etc. ALL of them learned to suppress at least some of their problem behaviors and ALL of them became at least partially self-sufficient. But all were also clearly still autistic.

I could pretend that I'm black, perhaps even well enough to convince people that I really am just a light-skinned black person. It wouldn't mean I had "recovered" from my whiteness. I was born white and will always be white no matter what I do. Anyone can change their behavior. It's painfully obvious isn't it? But studies like this are gold, because they offer scientific evidence of what we already know to be true.

Well said.

THEN they can look forward to a life of social misunderstanding because they look/act NT, but still think autistically. Also exhaustion from keeping up the "normal" act for years.

.

Might it not be possible that they were misdiagnosed in the first place?

That's a good point. I've been tossing this around since that lady turned up in the news pretending to be black. It made me think of a time when my cousin faked having good vision in both eyes. She memorized the eye chart with her good eye and recited it when they tested her bad eye, so she wouldn't have to have glasses when she was a kid. Joke was on her, she has a lazy eye, but that's beside the point.

I research autism, but I'm NT. If I was assessed for autism, and if I wanted to I could give "autistic" answers I could get myself diagnosed for autism. Don't people do things like this when they fake disability for bad backs or whatever? I don't know why someone would do this. Maybe if you had an autistic sibling you might pick up their mannerisms or strive to be like them? But yeah, they could totally have been misdiagnosed.

Another thing is people who BARELY score on the spectrum. Many women are like this, and I would also suspect people of color or people from non-Western countries (US, UK, AU, etc). The test is expecting answers from a white man, so if you're something else, they would not account for it and would likely miss your "shade" of autism.

I doubt many people fake autism. I would guess that the majority of false autism diagnoses came about sincerely, as I can see a variety of reasons that that could occur.

In the case of "the kids who beat autism", those kids were all diagnosed young. I find it extremely difficult to imagine a 2 year old faking autism for attention. "Ooh I know what I'll do. I'll flap my hands, pretend I can't talk, and not socialise. Maybe THEN mummy will give me a cookie!" LOL

But I think in the case of kids, we KNOW there are many disorders which 'mimic' autistic traits. Fragile X is a well known one, but there are lots. My 13 year old was recently was recently diagnosed with dravet syndrome (past year), a condition that has autistic traits listed as a symptom of it. He was dx'd with autism when he was 2. My first thought when this happened and I read the list of dravet symptoms was, "So does he actually have autism? Or does he just have this?" It comes down to the question of "Is autism just a collection of traits or is it something more?" (In the end, the people who work with my son said he is definitely autistic - he appears more autistic than a regular child with dravet).

Also, I bet some young kids do pick up on their autistic sibling's behaviour and mimic it. Not to 'fake' anything, but because NT children mimic other kids to learn how to behave. If their main role model is autistic, that doesn't seem like a huge stretch to me.

With adults, I think it's far more common for someone to truly believe they have autism, but be wrong than it is for them to fake it. You can't truly believe you are black if you're not (unless you have some severe mental illness that causes you to see things). But you can truly believe you're autistic when you're not. It's easy for people to start believing they have disorders or illnesses (*and no, I am not saying autism is an illness*) when reading the list of symptoms. Even when I think about head lice, my head starts itching, even though I do not have head lice. I can completely see how people start to believe they have things by reading about it (and I mentioned illnesses because this does not just apply to autism- I think it applies to a lot of things).

That said, I'm pretty sure I could get an autistic score on an autism test too if I wanted to and I'm NT too. I guess some might...

There are a lot of people even here on WP who think Aspie Wanabees is a significant phenomenon. And it it is mostly thought to be about Aspergers not Autism in general. The idea is that for a variety of reasons people want to be like the stereotyped Aspie characters on TV or current and historical geniuses described as Aspies. In the real world people who fake it unless they have a fictitious disorder would be soon dissuaded from this idea when they are bullied, not believed and lose jobs and friends. Sadly this is widely enough believed that I do expect more and more Aspies to be misdiagnosed with fictitious disorders going forward.

The "miracle" recoveries will only perpetuate this idea.