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Comment by melissalobos | Hacker News Reader

So is it possible that autism might be more than one disease? Instead of a spectrum, in the future do you think that one or more of these subgroups would be broken out into newly classified diseases?

For instance a significant subgroup has sleep issues and elevated levels extra-axial CSF. Another had significant GI problems. Does it seem like those subgroups may have autism from different causes, and maybe different diseases?

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Hopefully this gets posted: HN often rate limits my posts.

In short, yes. Autism may one day be meaningfully classified as different conditions that share some similar symptoms, but have different causes, outcomes, etc. The common symptoms of autism tend to be seen in high-level cognitive functions, that depend on a lot of subsytems, if you will. Car analogy: A car may exhibit the same symptom (won't start), but the cause can be different (out of gas or a dead battery). But this analogy can easily be misconstrued to mean that autism is about being broken. Emphatically, it is NOT. This brings me to a final comment of your post: Autism is not a disease.

Much of the autism spectrum represents valuable neurodiversity that does not impact their quality of life, and actually provides a net benefit to themselves and to society by allowing diverse thinking styles and perspectives. However, I will venture to say that some aspects of the spectrum do need to be addressed like a disorder: severe intellectual disability, severe anxiety, these can be really impactful on QoL.

Thank you for your response, I really appreciate it!

> Autism is not a disease.

I will try to keep this in mind in the future.

This is like trying to say that because some blind people have improved auditory function, and because that is sometimes useful to society, deafness is "not a disease". We can have sympathy for autistics and try to make reasonable accomodations while also trying to cure it so nobody in future generations is born that way.

I'd just say that it is a sensitive topic with many legitimate stakeholders and perspectives.

So you’re basically promoting eugenics ?

My brain works different from yours, it is not a disease and doesn’t make me disabled. Just because there are fewer of us than there are of you doesn’t mean we don’t have a right to exist.

Autism is not comparable to blindness in any meaningful way, so no.

I've got an anecdote from a nurse that when autism was registered as a disability the diagnostic criterion were loose enough that it enabled practitioners to fudge the numbers in favor of the families enabling them access to the special needs care and support systems which would otherwise be crippling.

If this is true, I would expect it to function as an umbrella describing symptoms rather than pathology.

EDIT: I should clarify that I'd like SubiculumCode's input on this if they find it worthy of discussion.

There are a couple of motivations. A diagnosis of autism opens up support services that are often needed, one way or another. Therefore, I'd acknowledge there is probably incentives for the clinical diagnostic process to favor limiting false negatives. Nevertheless, when it comes to the gold standard of autism diagnosis (i.e. the ADOS), diagnostic sensitivity has increased over the years by zeroing in one the symptoms that autistics tend to share.

The implications of this increased sensitivity has been to 1) autism prevalence has gone up , and 2) the average "severity" of autism (ADOS CSS scores) has decreased. This has also led to conflicts within the autism advocacy community: e.g. diversity vs disorder.

> A diagnosis of autism opens up support services that are often needed, one way or another.

In the LA area, there's a 6-month wait list to see an in-network child psychologist or neurologist that can give an autism diagnosis. Booked in November 2021, our appointment is in March 2022 and therapy classes are also wait listed. We found out-of-network providers but they are charging from $2,500 to $7,000 along with a 3-month waitlist.

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