Heterogeneity of ASD

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https://www.nature.com/articles/s41380-018-0321-0

What does everyone think? My stance on Autism politics is basically as follows: until we know what we mean when we talk about "Autistic people" (currently, we do not) it will be practically impossible to organize any medical, philanthropic, or social movement to address "Autistic people's" problems.

I guess I am not sure of your definition. ASD is a clinical definition of a disorder. Given that there is variation in presentation, in women, for example, it would be good to understand more on how ASD manifests itself. Clinical definitions are not a description of an individual, nor should they be. Any medical, philanthropic, or social movement also needs to understand the focus is on the clinical disorder. If we define it on personal terms, then you are just creating a social club whose membership is defined by the people we like.

Agreed.  Until autism is clearly defined in its causes and parameters, we really don't know what it is.

While the behavioral model may work (more or less), it still does not take into account behavioral boundary conditions.

The article indicates that we have created the "ASD" medical construct without really knowing what "ASD" is. We can use a (very subjective) clinical definition all we want, but if it's too vague to easily pinpoint what specific problems, traits, and behaviors are experienced by us in need of rectifying, it's not a very useful clinical construct.

Also, activists on the "social model" end of the Autism conversation tend to eschew terms like "disorder" and "clinical"... see Nick Walker's blog and the burgeoning "civil rights" movement he's trying to get started. Terms like that are tantamount to hate speech to some people, which further limits the scope of the conversation we are allowed to have.

It is not uncommon to measure a something in order to understand it. As you said, this is a complex question. So why not see if a population does in fact have commonality? You seem to reject the concept outright.

Mr. Walker is one voice and a good one. I hope we can all contribute to the conversation. So, how do you define a group? Usually, there is an underlying characteristic or variable. For a minority, it can be the ethnic criteria. For an environmental group, it can be the issue. Generally, groups are self-defining by the variable uniting the group. So what is the variable for the ASD group?

Practically none. That's the issue.

Some people are primarily impaired by inability to communicate (even with sign language and assisted technology).

Some people are primarily impaired by self-harm and seizures.

Some people are primarily impaired by obvious stims and sensory issues.

Some people are primarily impaired by flat affect and lack on nonverbal cues.

Some people are primarily impaired when they unintentionally give off negative nonverbal cues.

Some people are primarily impaired by inappropriate readings of situational cues and boundary crossing.

Some people are primarily impaired by intense rigidity of focus and routine, etc...

The "social model", "medical model", "charity model" and all that are reductionist ways of characterizing sprawling, multifaceted problems. Some people feel they just need acceptance. Some feel that they want a "cure." Some feel that they need a mixture of both, or something else entirely.

We can be as different from one another as we are from "NTs" and the line between "NT" and "AS" is blurry all the while.

More precise categories that more clearly indicate what someone is struggling with would be better than "ASD". I think the term "Autistic people" gives this facade of a homogenous experience.

The only shared "variable" for "ASD" I can think of is social impairment. But... that's vague as all get out. It overlaps with problems people with social anxiety and mental illness have, and is not really something that uniquely defines "ASD".

Nick Walker's issue is that anyone who uses the "medical terms" is using the "master's tools." He conceives of the problem as purely one of structural oppression that can be remedied by a "social justice" movement. Anyone who disagrees (or doesn't measure up to his standards... he's bizarrely gone after Temple Grandin before) is brainwashed by the oppressor.

We read as much in my disability studies class, and I couldn't deal with how simplistic and virtue signal-y his articles came across as. Spare me.

But, by all means, if you have a specific commonality which unites all "Autistic" people under one umbrella and differentiates us from everyone else, I'll hear it.

I agree it is a complex issue. What about the DSM-5 criteria is not enough to to distinguish membership?

Yes agree the spectrum is too wide with polar opposites in needs.

I believe Maslow addressed this in a pyramid hierarchy of needs.

The high functioning aspie computer programmer who may be married and live a full life may be aspired to more ego seeking needs like an identity and the need not to be labeled “disabled”.

Those severely impacted by ASD may just want their brain to function properly and can only dream of the things the hf aspie has let alone the NT.

1. Its criteria is very vague. I just noted how diverse the needs and behaviors are that fit into the criteria. Is a group that diverse really one group anymore? How do we educate others on a group so diverse? How do we formulate comprehensive policies about a group so diverse?

2. It's heavily subjective. Honestly, a the end of the day, "Autism" is whatever doctors decide "Autism" is. DSM is ever changing and being updated. If doctors wanted to throw "listens to alternative rock incessantly" into the DSM criteria, they could, and henceforth all ASD-diagnosed people would necessarily have to be diehard Death Cab for Cutie fans. (Yes, this was a joke. Point is, on some level, the "Autism community" is just whatever the the current medical zeitgeist says it is.)

3. It's American-centric. Most of the world still uses the ICD, and many American mental health professionals are adopting the ICD too. ICD and DSM criteria can vary drastically, and the definition can be relaxed or made stricter if doctors feel like it. Autism varies across cultures. In Japan, eye contact may be less of a big deal, but Autism is diagnosed at higher rates in kids that speak too loudly (I'll try to source this later, I used this anecdote for a paper).

Last I checked, in Australia, diagnostic rates are through the roof. I don't think there's anything in the water that makes Australian kids more likely to be Autistic than kids anywhere else. I think the definition is subjective. I think that national practices in terms of mental healthcare, special education, and insurance reimbursement rates also impact the rate of ASD diagnosis.

4. Honestly, where you draw the line between "neurodiverse minority group" that must be accommodated and "person with personality flaws they need to take care of" is...fuzzy. Don't get me wrong; in "Autistic populations" that have been studied, in spite of their considerable diversity, the rates of depression, suicidal ideation, and shortened lifespans mean that as a whole, many people need help and accommodation. But how do you figure out whether an individual person is a "neurominority" or just a "quirky person" (or a rude/weird/kind of dim person with certain skill and behavioral deficits who nonetheless is not a "neurominority")?

All of these are factors that make the Autism diagnosis inherently vague, subjective, and susceptible to the whims of any given nation or time period. Because of that, an organized "Autism culture", "community", or "civil rights movement" would be very difficult to really start. ASD is so broad and subjective a label that it has honestly lost much clinical or sociological meaning imo.

I'll say it again: I would love it if this "neurominority/neurodiversity" talk held much actual water. I totally get why it appeals to people and why they pick it up.

But ultimately, it's just not a feasible framework in my opinion.

I appreciate you answer. I agree the DSM or ICD can be vague, but that is also the nature of the condition. I guess when I do read those criteria, they not quite a list--multiple criteria need to be present and this needs to be in evidence since childhood. So one particular behavior or criteria will not make you autistic. But these criteria are also trying to identify what autism is--a deficit in cognitive empathy--rather than to include all of the co-morbid conditions that might be common with people with ASD/ASC. Once a line is drawn, you are going to include or exclude certain people. This happened with the change from DSM-4 to DSM-5, for good or ill.

And unlike an ethnic group, ASD is really trying to serve a population whose lives are being impacted by this condition. And we have members in our group that do require serious medical interventions and others that don't. But it seems the underlying reason to define this group is to assist them. And as you pointed out, there are many factors that can impact autistic presentation, gender, culture, etc. But if someone can function in a society because their culture is more open to autistic traits, then where do they belong? I lived in Japan and, for all intents and purposes, I was not "autistic." The US is very different--I got my diagnosis here.

But this is a very important policy question. Even with the unevenness of autism diagnosis in the medical community, it is still being given by people with qualifications and so at least has some limits to variability. Naturally, it would be great if we had a genetic test that could give positive results. And the members that self-diagnose presents another issue. But as a policy matter, there needs to be a criteria. Simply saying it is too complex implies autism does not exist--I am not sure that is a solution.

I think that at the very least, we need more specific categories.

Now, "high-functioning" and "low-functioning" as current categories have many problems, and themselves are very reductionist and simplistic. I understand why there is pushback against those labels. But there clearly are varying needs that need to be addressed, and the condition may need to be split up to easily address those.

As I've said, the subjectivity and ever-changing nature of the diagnosis means that when we're talking about "Autism" we're not really talking about one thing. It's a very fuzzy label right now, and because it's so fuzzy, it's difficult to say much about the "Autism community" without overgeneralizing.

To come up with functional identities, we need labels that denote something precise. For example, I have OCD. OCD's definition is quite precise, in comparison to ASD. We have intrusive thoughts which we try to neutralize, and those attempts at neutralization make the thoughts grow stronger. Even though there is quite diverse presentation, OCD describes one problem (intrusive thoughts) and one mechanism (neutralization).

ASD has serious problems with vague criteria. We have social deficits, yes, but why? Different people on the spectrum seem to have very different ways and reasons that they're impaired. (All of the things that I described in my previous posts.) To make a better diagnostic category, we need clean, precise criteria.

I can't agree that ASD has to have a narrow or specific criteria. Neither can I agree that the presentation in individual is an impairment to find a criteria. Public policy handles complex groups all the time. Native American is hardly a unified group with a unified experience. Yet policy is able to encompass the needs of that group.

While it would be nice to have a simple metric to group people, that seldom is the case. So what is the answer? We need to figure out the most equitable criteria that gives people the support they need. So far, the medical criteria provides that. And the advantage with that criteria is that it can develop as the science develops. Perhaps in the future, ASD will be defined as two or three different conditions. But right now, it isn't.

Just as there is diversity in the NT population, we have diversity in ours. I think we are going to have to embrace that diversity and look for solution for those in the population. There will be no "theory of everything," but a number of different approaches to different constituents. And we already do that for the NT population, so why not ours?

I have "always" consider autism to be a *social* disability in an allistic dominated society.
An inability to seamlessly and effortlessly be part of the community.


BTW,
Is this how we feel amongst ourselves, our peers?

For me, yes.
I am almost always second-guessing myself.
I can never really let my guard down.
But in this group, there is more understanding/empathy/forgiveness, often.

Native Americans were not born subjugated. They were intentionally subjugated by people who wanted to gain something from their subjugation. Impaired living is not inherent to any racial group. What they are all suffering from is purely a case of systemic oppression.

Obviously, this is not the case with Autistics. There are medical complications, interpersonal challenges, mental handicaps, physical handicaps, etc... that cannot be said to be purely the result of one-way systemic oppression.

We are not dealing with anything like being a racial category. I wish activists would stop relying on these analogies.

Well, first, I am not an activist.

Second, you missed my point--you can have complex groups and you can deal with that complexity. Native Americans have a wide range of cultures and experience. The issues they face are also diverse. So why can't we deal with a diverse group with disabilities?

So, what you are saying is there is no systemic biases in regards to the autistic community, but only racial or ethnic communities? And you are saying that systemic biases that limit access to employment, education, and health care to racial/ethnic groups and do not impact the autistic community? And that violence against a community only apply to racial/ethnic groups? And the mechanisms that bias racial/ethnic groups don't apply to the autistic community?

The research I have seen is that systemic bias is pretty consistent across groups. The social science research methods don't really change among groups.

I did not say that there is not systemic bias against "Autistics". I said that systemic bias is not the only issue, and for many of us, not even the primary issue.

I understand your point that with Native Americans there is a wide range of complex issues. I think the issues are vastly more complex with something like ASD, which is not just subject to potential to be discriminated against, but has severe social and medical complications on top of any potential to be discriminated against.

I am also aware of the problems of racism within the Autistic community, if you're referencing that. The image of an "Autistic person" is a little white boy. We haven't moved past that. So I'm not denying the presence of these problems, but I'm saying that they're not the only problems that we have to grapple with.

At the very least, most PoC, women, LGBT and the like can agree that they are primarily victims of systemic prejudice and that is what they must combat. This isn't really something that holds for such a broad and vague disability like Autism.