Why it matters whether autism is a trait or a unified condition

I’ve written a lot about autism as a trait, contrasting this with a “single unified disorder” narrative.

To me, this is not a nitpick. It matters very much whether we think about autism as a “single disorder” kind of thing, or a “dimensional trait” kind of thing.

Take a popular media article from time.com that came up on Twitter today, about the “Intense World” theory of autism. It’s called “What if people with autism are actually hyperfunctional?” and a sample quote is:

Now, a new study published in the journal Frontiers in Neuroscience suggests that the brains of people with autism are actually hyperfunctional rather than stunted or impaired, and that if treated early in a very predictable environment, symptoms could diminish.

The article goes on to suggest that if autism has this etiology, it should significantly change treatment strategies.

This study is interesting, but it applies to only some autistic people. I don’t think it’s relevant to me or my son, for example.

Results that apply to only some people are still interesting! It isn’t necessary to overhype into a unified theory of autism. But there’s a practical consequence if we only apply a result to a subset of autistics, and that’s the need to figure out which people it applies to.  The autism diagnostic criteria don’t do that work for us.

If we apply a research discovery to the wrong people, then we might harm them by using the wrong approach to helping them.

This particular result, because it’s about being “hyperfunctional,” also continues the disability superpower trope, something that can be harmful by creating feelings such as these. When presenting this kind of “autism as a strength” idea, we have to be sensitive from a human perspective, thinking about autistics who may read about it and think “well, I don’t feel hyperfunctional” or “I don’t seem to have any special skills.” Here’s where always qualifying with the word “some,” some autistic people, can be a small but helpful gesture.

But most importantly — however an article like this one on time.com plays out in practice — it’s inaccurate in a way that deserves correction.

To see this, rewrite it with something we all agree is a dimensional trait, such as intellectual disability, and a single condition that causes that trait, such as Down Syndrome. We might write “What if people with intellectual disability actually have trisomy 21?” and we might talk about how we need to focus on low muscle tone, short stature, and congenital heart disease as central to the treatment of intellectually disabled people.

I think we can all agree that this would be more than oversimplified; it would be incorrect and lead us to flawed treatments. In cases of intellectual disability that are not trisomy 21, we would be badly mistaken to go looking for the characteristics that make up Down Syndrome.

If time.com made this mistake about intellectual disability, they would have to issue a correction. The reason they can mess this up with autism is that autism researchers are also still messing it up, and the mass media follows them. The most cutting-edge researchers are now talking about “the autisms” and so on, but lots of them haven’t caught up.

So whenever some poorly-designed study correlates stuff with autism, and the media reports this as a possible new unified theory of autism, it’s misinformation. Plain and simple. It’s no different from asserting that trisomy 21 is the unified theory of intellectual disability.

There are more known etiologies for intellectual disability than for autism, no doubt. But autism does have some known ones, and there’s no evidence that the remaining idiopathic cases of autism (or intellectual disability) will turn out to be from some unified cause. Most evidence seems to point the other way toward diverse causes.

Discovering trisomy 21 was still a big deal, still very interesting, even though it doesn’t explain all intellectual disability.

When we say “autism is due to intense world,” that’s a much stronger claim than “some autism is due to intense world,” because it requires us to not only prove intense world but also to disprove every one of the other zillion proposed theories of autism. When it comes down to it, quite a few of those theories could be true … for particular autistic people and not for others. To help each person, we need to understand what autism means for them, individually.

Good science and good medicine require us to be precise about our claims and our terminology.

 

Advertisements

One thought on “Why it matters whether autism is a trait or a unified condition

  1. lynwater

    Hi,

    Thank you for your post. I agree with everything you say.

    I cannot believe anyone could propose a theory of autism based on a single deficit or single skill, such as the “autism equals being hyper-functional” theory.

    And I don’t blame the media, I blame the autism research community.

    Too many people have too big an investment in one test for “autism.” Or one intervention. Or one theory of brain dysfunction.

    The field is awash in theories that are meaningless because autism is a not a diagnosis of a disorder or a disease, and autism is definitely not a unified condition.

    Autism is a set of traits. These traits or symptoms index an extremely wide array of neurodevelopmental problems.

    Some research findings might apply to a subset of individuals with an autism diagnosis, but research has consistently failed to find replicable subgroups within autism. This is, in part, because comorbid symptoms have only rarely been included in subgrouping efforts.

    You said

    “If time.com made this mistake about intellectual disability, they would have to issue a correction. The reason they can mess this up with autism is that autism researchers are also still messing it up, and the mass media follows them. The most cutting-edge researchers are now talking about “the autisms” and so on, but lots of them haven’t caught up.”

    I agree with you that many people are talking about the “autisms.” However, even most of them are studying groups defined by the DSM-5 ASD criteria.

    Dr. Tom Insel of NIMH has pushed the Research Domain Criteria proposal. He argues that because no psychiatric diagnoses have biological validity, research should focus finding symptoms that can be clearly linked to specific brain systems.

    Currently I am working on two academic papers and a book for the public and parents–both papers and the book argue that autism is not the right category for any research.

    I am also working with Eric London to try to start a new working group that will have the goal to study neurodevelopmental problems without invoking autism as a category.

    all the best,

    Lynn

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s