Thoughts about Neurodiversity

You may have noticed a disparity of opinions on autism or a cure thereof, and I want to explain what I believe that disparity comes from. Not that I can speak for others, but I'd say my views on this are similar to the "neurodiversity acceptance" camp, but framed here in a slightly different way than I usually see it, and contrary to most medical groups or the "cure" camp.

The short version is that neurodiversity (e.g. autism spectrum) is a perfectly okay non-disabling trait that has a high likelihood of being packaged with some other traits that actually are disabling.

What is a disorder?

Before I go further, let me do an analogy. Diabetes is a health problem. Generally no one is going to argue that diabetes is not a health problem. Although any cloud can have a silver lining, diabetes is unquestionably a Bad Thing that we would all like to not have. Diabetes treatments are important, and we would like to have a cure for diabetes.

In the USA, black people are more likely to have diabetes than the general population. That does NOT mean that being black is a health problem! They're not even the only ones who get diabetes. It might make sense for social services to focus a little more diabetes help to the black population or for parents to give their black kids more diabetes prevention advice, but if anyone suggested that we need to find a "cure for black," everyone would think they're nuts and rightfully so. Actually, it's not just diabetes, there are a lot of problems that differ in prevalence by race, and the African-American population tends to get the short straw on a lot of them. But even if it were possible (and it probably is) to make black kids look indistinguishably like white kids, that's not a worthy goal. That wouldn't even fix most of their problems. The only thing it would fix would be people discriminating against them, but that problem could be better solved by everyone else not being racist.

Neuro-types are the same way. All of the negative characteristics of autism fall into one or more of these categories:

1. There is another disorder which describes that problem, and you could have just been diagnosed with some other disorders instead (e.g. Social Communication Disorder, Social-Emotional Learning Disability, Sensory Processing Disorder, Executive Function Disorder, etc)
2. A lot of non-autistic people have that problem, and they are impaired by it despite not having autism (e.g. low IQ, everything in category A)
3. A lot of autistic people don’t have that problem (e.g. non-verbal, low IQ, etc)
4. Lots of autistic people have that problem but it’s not even part of the official diagnostic criteria (e.g. auditory processing problems, executive function problems—previously this was the case with sensory problems too! And I've heard a lot of us have gastrointestinal problems for reason.)
5. It’s not legitimately impairing, but many non-autistic people will look down on you and treat you badly because of it (e.g. unusual body language, less eye contact than normal, non-disruptive stimming, sometimes even introversion)

The problem comes from the way neurotypicality and autism are defined. The ASD diagnostic criteria does not accurately describe the real problem. 

In other words, most people who are impaired or disabled by symptoms of Autism Spectrum Disorder could have their impairments explained by another disorder or a combination of disorders, instead of ASD. For example, the social issues of SPCD plus repetitive behaviors caused by SPD. In some cases, it may be a disorder that's not defined yet.

Most people who are diagnosed with ASD are disordered, impaired, or disabled in some way, especially if they were diagnosed as adults. They need actual help with their actual problems... but I don't think autism is their problem. 

The broad idea of autism

There is a concept called Broad Autistic Phenotype (BAP) which describes autistic traits independant of disability. The qualities are aloof personality, rigid personality, and pragmatic language problems, but that's "I hate people who don't fulfill my extroversion needs"-speak for untalkative introversion and a fondness for consistancy and predictibility. You might see the occassional article talking about BAP like it's a mild developmental disorder, but it's not officially a disorder--and it shouldn't be. I guess you could call it a personality type.

There has been very little research into BAP, and most of the research that has been done is on the family members of children diagnosed with ASDs. (Research found that family membes of ASD kids were more likely to have BAP qualities than the general population.) Unfortunately, even on the studies that focus on non-disordered people with BAP, something about the study wording made it sound like the researchers considered BAP to be a bad thing.

I think people with BAP tend to be more similar to autistics than they are to NTs but they are considered NTs (especially if they don't have ASD family members) because they don't fit the sketchy diagnostic criteria for ASDs. Some may be disabled by autistic-typical problems that are not in the diagnostic criteria, or some may have autistic-typical problems that aren't bad enough to cause "clinically significant impairment," and some may be totally non-disabled altogether.

There is almost no research about this type of people or this type of brain. There's even less value-neutral research or information about the strengths and weaknesses of this group compared to other groups. Autism is considered to be a disorder because it impairs people, but only impaired people can be considered to have autism.

Neurotypical people are called that because they are the majority, but I bet they could be divided into more precise categories if they weren't defined solely by their lack of an ASD diagnosis. Maybe some of those hypothetical categories have a higher likelihood of certain problems or impairments. For example, autistic people sometimes have a problem with non-literal language, but I've seen a lot of people (not all or even most NTs) who apparently have the opposite problem: they have difficulty taking things literally when they're supposed to, they read non-existent inferences into things, and it seems to cause them problems. I can't help but think if we had better language for different neuro-types, we'd have better research, and everyone would benefit.

I say "probably"/"maybe"/"seems" so much, and I don't provide any stats to support these ideas, because as far as I know, these things aren't studied from this perspective or any similar perspective.

Implications for Treatment

This is why there's so much debate about looking for a "cure." Some people are offended by the suggestion that autism needs to be cured or even diagnosed, and  compare it to curing or diagnosing homosexuality. I think people who hold that perspective consider "autism" to refer to BAP, not ASD, even if they've never heard of BAP.

I WANT a cure for my executive function deficits.
I WANT a cure for my debilitating sensory defensiveness.
I WANT a cure for my gastrointestinal problems.
I WANT a cure for my social anxiety.
And I think I--and everyone else--should've been given some actual human relations education during those years I wasted in school, rather than having to home-school myself as an adult.
But I DON'T WANT a cure for my personality. I don't need a cure for my other harmless traits.

The above problems have ruined most of my life and will continue ruining it until I get some kind of treatment for it. But people who have a problem with my uncommon gestures, lack of eye-to-eye gaze, untalkativeness, or introversion can go screw themselves. But which of my traits are considered to come from "autism"?

It seems like most research about autism cures and treatments is concerned about things like eye contact and rocking and generally making kids look "normal." Apparently no one cares that toothpaste is painful or that the idea of mailing a prepared envelope emotionally crushes me.

The prevailing idea among people who want to cure autism seems to be that the Broader Autism Phenotype is a bad thing, but not bad enough to be called a disorder, unless you have an unusually bad case of it, in which case it's called ASD instead of BAP. I'm arguing that BAP is a perfectly okay trait that unfortunately comes with a higher predisposition to certain disorders. I can't help but feel like people diagnosed with ASD actually just have BAP plus some other disorder(s), and it's those disorders that are the problem, not BAP or autism. Meanwhile, the people with BAP and no disorders aren't diagnosed with anything, which is how it should be.

Unfortunately, society seems to have trouble handling more than a couple different disorders. (For example, if you're a parent trying to get your kid disability accomodations in school, you're likely going to have a hard time regardless, but it'll be be even harder if it's a disorder the staff has never heard of or doesn't believe in. And we're always having to try to convince the uninformed masses that people with [insert disorder] aren't inherently dangerous sociopaths, but now imagine if autism were replaced with fifty other disorders and we had to convince people about all of them!) Even though I feel like no one should be "diagnosed" with autism, I'm still pursuing a diagnosis of autism (ASD) for myself. Why? Because I need help with the above problems, and hardly anyone has ever heard of the more specific disorders that encompass those problems. I actually did try getting help for SPD once, but I found NO ONE who would help. Even though autism is really well-known, I had a hard time finding anyone who would asses or treat autism in adults.

The one upside to autism being this awkward hodgepodge of disorders is that it allows all those problems to at least get a little bit of attention. Still, it'd be better if we started using the word "autism" to refer to BAP, stopped trying to cure it, and started giving all those other disorders the attention they deserve.

A postscript regarding disabilities

Oh, yeah. This is kind of tangential but I want to clarify this one thing... The concept of "I'm not disabled; you're just a jerk" is not supposed to be any kind of alternative, correction, or supplantation of the concept of "I'm disabled and you need to stop being a jerk about it." Sometimes people pathologize traits that should be considered perfectly acceptable, and that's a problem. Sometimes people act like individuals with disabilities can't have any worth or value in their lives, and that's a problem. Those are two separate problems that both exist. Well, my point is, arguing that an alleged disability is an unfairly pathologized trait is not the same as arguing that all disabilities would stop existing if people would stop being jerks.

There are also some people who are troubled by their disability symptoms, but it's such a big part of their personal identity that they feel uncomfortable at the idea of getting rid of it. (I can sympathize a little. Certainly, it's really weird to imagine myself NOT having sensory defensiveness.) They're not the one's I'm talking about in this post, but I don't want to sound like I'm denying that they exist.

Credits

Thanks to some folks on wrongplanet.net (ASpartOfMe, cavernio, Knofskia, B19, WelcomeToHolland, and Aristophones) for helping me solidify these ideas.