What Does It Mean to Be Disabled?

Someone on Twitter asked two different questions. He asked if autistics preferred person-first language (person with autism) or “autistic person.” I have given my answer to that. He then asked if disabled people preferred “person with a disability” or “disabled people.” I want to share my answer to that:

I have autism, but the only reason I’m disabled is because of how I’m treated by everyone else. I can’t keep a job because of the ableism and prejudices of neurotypical people, not because of me. So it would be “person with disabilities” since I’m not disabled.

Of course, there are autistic people out there whose autism is so severe that it becomes a disability regardless of everybody else. But there’s a majority of us for whom we are disabled by others rather than inherently disabled by our way of existing in the world, our perceptions, our interactions, our ways of thinking, our behaviors, our bioculture. From this perspective, one would have to argue that someone from a different culture who comes to the United States is “disabled” because of how everyone treats them. The difference is that people mistake autistics as being part of the neurotypical bioculture when they’re not. And it’s that which is disabiling more often than not.

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A Clash of Cultures

Do you have trouble keeping secrets? Do you find you typically tell the truth, even when it’s socially inconvenient? Do you tend to over-share with everyone, including complete strangers? Are you direct and to the point–to the point that people often think you’re rude? Are you unsure what is or is not acceptable joking? Or what is or is not an acceptable comment? Are you unsure why people want to talk about the same daily nonsense and don’t understand why they don’t want to talk to you when you’re the one with something interesting to say?

If this sounds like you, you may be part of a small bioculture people call “autistic.” I say “bioculture” because it recognizes the fact that culture has its roots in human biology, in neural structures. All of the normal things neurotypical humans do are part of the broader underlying human culture, of which there are many variations. Those underlying patterns on which cultures develop–which include keeping secrets, having privacy, being indirect, engaging in small talk, and understanding the social rules of appropriate comments and jokes–are simply not the natural patterns of autistic people.

I want you to imagine for a moment a culture of autistics. Imagine, if you will, a culture where everyone means what they say and say what they mean, sugarcoat nothing, are always direct, rarely if ever lie, consider fixing problems to actually be a demonstration of empathy, engage in almost nothing but in-depth conversations about a wide variety of topics, do not typically fear death, value rationality and evidence above everything else, simultaneously respect other’s privacy while also being an open book themselves, consider science fiction, fantasy and video games to be the height of culture, are science and fact-oriented, and almost everyone has perfect pitch.

How would you feel? If you’re on the spectrum, it sounds like heaven. (Would we be as anxious as we are now?) But if you’re not, how socially awkward would you be? Remember what I said about if we pathologized neurotypical behavior.

Autism and the Neanderthal (and Denisovan and other apes) Connection

There is a cluster of genes that is found in Homo sapiens, but which is not found in any other ape, including Neanderthals. It turns out that the deletion of this segment (essentially, reversion of the genome to pre-Homo sapiens, at least in this section) can result in autism. They point out that

researchers determined that this structure, located at a region on chromosome 16 designated 16p11.2, first appeared in our ancestral genome about 280,000 years ago, shortly before modern humans, Homo sapiens, emerged. This organization is not seen in any other primate – not chimps, gorillas, orangutans nor the genomes of our closest relatives, the Neanderthals and Denisovans.

This certainly seems to support my contention that autism is in a real sense neotenous, at least if we consider retention “earlier traits” to be a form of neoteny. And given that it seems to result in a brain that is structurally more similar to a young child’s (2-4), it may be neotenous in the more traditional sense as well (especially if the cluster of genes in question are turned on during childhood development). While there is a great deal they do not know about this gene cluster, they determined that one gene produces a protein binds with another protein that “allows the cells to capture iron more efficiently and make it available to proteins that require it.”

“This ability to help humans to acquire and use this essential element early in life might confer a significant enough benefit to outweigh the risk of having some offspring with autism,” Eichler said.

As I’ve pointed out here and here calling autism a “risk” is shortchanging all of the positive contributions autistic people (and perhaps only autistic people could have) made to the human race.

Don’t Be Rude

“Why didn’t you do X?”

“Because Y.”

“I don’t want to hear your excuses.”

“Well, you asked the question.”

“Don’t be rude!”

To an autistic person, the first question is a direct question, to be taken literally and to be answered literally. The answer isn’t an excuse; it is an explanation. So when you get mad at the answer, the autistic person doesn’t understand why you’re mad and will respond that you’re the one who asked the damn question in the first place, so why the hell are you mad about the answer? And that observation is not at all meant to be rude. It’s an observation.

Something I have never understood (and I’m writing this on this blog because of the very distinct possibility that my inability to understand it is a consequence of my autism) is why people cannot tell the difference between an excuse and an explanation. More, I don’t understand why people get mad at your answer when I am pretty sure they know what your answer will be. Why even ask the question. To me, asking the question makes you the rude asshole. Just get to the point. Say what you want to say and stop playing games designed to justify your yelling at me.

Many of the things we on the spectrum say sound rude to those who are not on the spectrum, but the same is true for us: neurotypical people sound rude all the time to us, when what you’re saying is clearly understood by everyone.

Autism is a Pervasive Developmental Disorder

Those familiar with autism are perhaps also familiar with the designation PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified), but I don’t think many understand that autism is itself a PDD.

I can provide some very specific examples of the degree to which autism is both pervasive and a developmental disorder.

Most people associate autism with being a communication/social disorder, but the fact of the matter is that it very often affects the body itself in a variety of ways. The fact that autism is a different form of neural construction and information processing should make us not all that surprised that other parts of the body are affected. The gut, for example, is often strongly affected in many of us on the spectrum. My son and I both have gut problems. As I have written about before, our apparent glutamate-glutamine imbalance results in leaky gut, which results in an immune response to gluten. Taking daily glutamine has helped us both. The leaky gut is an aspect of our autism, but it is at least treatable with glutamine supplements.

But there are other factors at play. I have come to understand autism as potentially neotenous, meaning the retention of infant traits while still continuing to develop into a sexually mature adult. In my case, that has meant developmentally underdeveloped heels and arches, meaning I have considerable physical pain in my feet. I also have twisted femurs such that my hip joints rub, also causing pain (especially if a strong low pressure system comes in), which may be related to the DPP since it is in fact a developmental problem.

I’ve also never been particularly coordinated. I’m not outright clumsy, but I’m nowhere near being able to be an athlete, and I never have been. Daniel is much the same way. Poor coordination is a common element among those on the autism spectrum, and it’s part of the PDD aspect of it.

Feet pain, hips pain, gut pain — all seem part and parcel of my own autism. So in my case not only do I have to deal with communication breakdowns and various misunderstandings, but a considerable amount of physical pain and diet restrictions as well. All just part of the fun of being on the spectrum.

Yes, I AM an Autistic Person

Am I a person with autism or an autistic person?

The latter identifies the person with disability; the former is “person first,” and suggests that the person and the disability is different.

If we are talking about a paraplegic or someone who lost an arm, person-first language would make sense. However, I am not a person with autism. That is, if you could “take away” my autism, there would not be a “Troy Camplin” left that in any way would resemble who I am. Autism is a brain structure difference, and that difference results in a particular way of thinking, behaving, acting, interacting, etc., and affects personality.

That is, I am utterly indefinable outside of the autistic structure of my nervous system. The same is true of my son, Daniel. He would not be him, with all his wonderful capabilities and occasional frustrations and difficulties, aside from the autism. Daniel is an autistic person. So am I. We are not people with autism, as though the autism could be taken away and we would remain the same (absent a few communication difficulties). No, we are autistic people. Quite different in our thinking, behaviors, interactions, etc.

This is different from saying I am a person with dark brown hair (or, increasingly, without much hair). The color of my hair does not affect my personality. I am a person with hazel eyes. I am a person with slightly low blood sugar. I am certainly a person with a large number of traits that have nothing to do with my personality, behaviors, thinking, actions, etc. Skin color, nationality, ethnicity, etc have no effect on my morals, behaviors, interactions, etc. But my being autistic does.

The thing with the “person first” language is that it participates in the medicalization of autism. If a person has cancer, you would definitely say they are a person with cancer and not call them a cancerous person (talk about a difference in meaning!); it’s a person with diabetes, not a diabetic person; it’s a person with psoriasis, not a psoriatic person. Things that can be potentially cured, treated, or truly controlled are things appropriately medicalized, as they are diseases of different kinds.

But I am not a disease. I don’t have a disease. And I really don’t have a disability, except from a purely neurotypical-centric world view. Nobody would consider me disabled because I’m left-handed in a right-handed dominant world. Many things are designed exclusively for a right-handed world, making many things difficult for those of us who are left-handed. But do those difficulties make us disabled? Of course not. We adjust. We sometimes find left-handed utensils. Sometimes people adjust to us (letting us sit with our left elbow away from everyone at the dinner table, for example). But we’re hardly disabled on account of it.

And the same is true of being on the autism spectrum. I adjust to the neurotypical world. I try to find autism-friendly social situations when possible. And sometimes neurotypical people need to adjust to us. Failing to do so is simply selfish and rude. Especially if we tell you that we are on the spectrum and explain our communication differences. If we do that and you call those things “excuses” and refuse to adjust your expectations, that makes you the asshole, not us. We don’t mean to be rude, even if we sometimes do things that can be interpreted by neurotypicals as rude; but when we apologize and explain ourselves, the decent thing to do is to accept our apology and to try to understand the communication breakdown with us.

To say someone is a person with something is to say that they remain the same whether they are with the thing or not. I am the same person whether or not I am with my computer, whether or not I am with my cup of coffee; even whether or not I am with my wife and children. I’m a man with a wife and children, not a wife and child person. But I am most certainly an autistic person. It is part of my state of being. My very existence is unthinkable in its absence.

A Literature of Autism for Empathy-Creation

On one of my other blogs, Interdisciplinary World, I wrote about a CNN article that discusses some of the more recent work that has been done on the connection between fiction and empathy-creation. This connection suggests several things to me regarding the gulf between autistic and neurotypical people.

One of these is perhaps very obvious, which is that autistic people need to read more fiction, and neurotypical people need to read/view more fiction with autistic characters. What is perhaps less obvious is that autistic people don’t actually seem to read much fiction or be all that interested in it (perhaps because too many works of fiction do not have many characters to which they can connect). Further, there is probably not a lot of fiction out there with explicitly autistic characters.

This means that autistic people cannot create the anchor needed to become interested in fiction and thus be exposed to other minds than theirs, and neurotypical people cannot delve into the fictional minds of autistic characters to develop empathy for them.

Meaning, we need a literature of autism. Or, at the very least, a reading list of autistic authors and fiction with autistic characters. Anyone care to contribute to creating that list?