Who Am I?

Autism and Disability

Posted: September 17th, 2017 | Author: | Filed under: Autism | 4 Comments »

I’m going to delve into the topic of disability and autism. One thing I’ve noticed in the year since my diagnosis is that the association itself is controversial for many people. And that strikes me as odd. I’m not going to reference any particular individual or post, but rather ideas and assertions I have seen in various places by all sorts of people. Even a quick google search on autism and disability will reveal all sorts of articles and posts asserting that autism is not a disability on one hand countered by others describing the ways it can be disabling. My youngest daughter and I have a standard phrase we picked up somewhere, though I don’t recall where, which we often use to express our shared frustration.

Words mean things! Really.

Now that’s not to say that words can’t have multiple, complex, or nuanced meanings. And the shared meaning we ascribe to words can certainly change over time and in different contexts. Nevertheless, the power of language lies in its ability to communicate and create shared understanding. Speech (written or verbal) is a form of action. It can inflict pain. It can build bridges. It can create new understandings. It can form empathy. It can be used to abuse and torment and it can be used to heal. Words are powerful things. Words are real, with their own texture and substance. So it’s not just a matter of a personal choice of words. There are reasons people are choosing and rejecting particular words in this discussion. They are forming or trying to form a particular reality through their words. Many of the reactions are visceral. I’m not sure my thoughts will add value to the discussion, but if nothing else it will help me to write them.

I also live and have always lived in the United States, so in this area my focus and context will be the particular one here. Some of what I write may have universal application. Some of it may be highly contextual. I’ll reference the EEOC├é┬áheavily since that’s the most relevant organization when discussing the formal definition and legal context of disability in the US. And if words have any meaning, we have to begin by establishing a common definition. The definition in the Americans with Disabilities Act (ADA) is a good starting point.

(2) DISABILITY- The term `disability’ means, with respect to an individual–

(A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

The Supreme Court had issued rulings that restricted that definition in ways that ran directly counter to the way Congress meant them, so they passed the ADA Amendments Act (ADAA) to ensure the definition was interpreted as they intended. In the US, it’s that law which requires employers to provide reasonable accommodations and prevents discrimination. That’s not to say that it works well all or even most of the time. But to the extent legal protections exist here, they are rooted in the ADA. The EEOC has issued a rule for Federal agencies, which are intended to be “model employers” and are collectively the largest single employer in the United States, that specifies how they will implement affirmative action as required by section 501 of the Rehabilitation Act. The first “targeted disability” in the form OPM has published for employees to voluntarily provide disability status uses autism spectrum disorder as its example.

So clearly in a legal context in the United States, Autism Spectrum Disorder is a disability. I don’t believe that’s a matter of dispute. But I sense that some people are trying to say that it shouldn’t be considered a disability. And the question then becomes why? There doesn’t appear to be any argument on a factual basis. After all, a person can’t be properly diagnosed as autistic unless it causes “clinically significant impairment in social, occupational, or other important areas of current functioning.” And almost any article, post, or online discussion I’ve found by autistic people discusses the issues they encounter and the different ways they’ve found to mitigate their impact. I empathize with all of it. But those very discussions illustrate the many different ways autism limits major life activities for all of us. We work to mitigate those limitations, but nobody can reasonably argue their basic existence.

So legally and factually, autism is a disability, yet some autistic people react strongly against that label. Why? I can only think of one situation where people usually reject an otherwise accurate description or label, when that label is experienced viscerally as demeaning or pejorative or threatening. When I taste the different words some autistic people use to express their rejection of the disabled identity label I often feel that visceral texture in the substance and shape of their words. And I understand some of it. Disabled people are often treated as less than human. They are subject to jokes, scorn, and poor treatment across societies. We have laws like the ADA because discrimination inarguably exists. Moreover, autism is pervasive and developmental which means that many of us have been targets of abuse and scorn, diagnosed or not, from our youngest years. We’ve heard the slurs and insults, even when they weren’t directed at us.

We’ve probably absorbed other ideas along the way. For some of us, accommodations and supports are signs of weakness. We need to be strong and push through. I’ve driven myself relentlessly for decades to find ways through every challenge. Ironically, despite my constant internal mantra that I needed to “be strong” I never actually felt strong. I felt weak. I saw everyone act like the things which were so hard for me were easy and I hid my struggles. I felt deficient and broken. It’s only been since I’ve been diagnosed, since I’ve realized that most people do not share my experience of the world, that I been able to begin to see that I’m not weak. In truth, I’m stronger than I ever believed I was. I’ve not really internalized that truth yet, but for the first time in my life I can see it. With time, I may even start to believe it.

“Disabled” is not, or at least should not be, a pejorative. The word is used to encompass all who face substantial limits to one or more major life activities. Those limits exist, in no small part, because the social systems and structures that work to one extent or another for most people, don’t work as well or at all for people unable to access them without accommodation unless, of course, such accommodations are provided. I can’t really say that’s the only source of those limits, though, even when it comes to autism. My heightened response, perhaps related to the amygdala or perhaps something else, is independently challenging to manage. My sensitivity to certain stimuli and insensitivity to others exist independently. And social is intertwined with everything it means to be human. It’s not just how people react to me; it’s also my struggle to effectively connect with them. Even when people say they just need “acceptance” they are naming and asking for a social accommodation. I would say it’s by definition “reasonable”; all human beings should be accepted. But reality often falls short of that aphorism.

Fundamentally, the fight against being labeled “disabled” seems to be a fight against being grouped with disabled people and treated and perceived the way disabled people are often treated. It may also be that people don’t even want to perceive themselves as “disabled” because they unquestioningly believe that would be bad. I can understand the power of that motivating force, but it’s not a noble one. I believe the technically accurate label for that state is internalized ableism.

I’ve seen that same dynamic in play within the autistic community. When I was first investigating autism and considering diagnostic testing, I was confused by some of the things I read and reactions I saw regarding the changes in the definition and criteria for autism in DSM-5. Specifically, most of the strong, negative reactions I saw were about the “elimination” of Asperger’s Syndrome. I studied the background to try to understand it, but much of it made little sense. Some people acted like ICD-10 was a completely different diagnostic tool. It’s not, really. The US uses the ICD for medical billing and specific diagnosis just like the rest of the world. And the rest of the world does “use” the DSM as a diagnostic tool. The DSM is not used exclusively in the rest of the world, but it’s not used exclusively in the US either, though it is perhaps used more broadly.

When I actually read the DSM-IV criteria, the only substantive differences I could see between Asperger’s Syndrome and Autism were that Asperger’s specifically excluded people with clinically significant delays in language or cognitive development. That’s the only real difference, which points to one reason for the visceral reaction by some people. They didn’t want to be grouped with those people, the ones often labeled with the ‘r’ slur. I read plenty of people who were highly offended by the idea that they had “autism”. And there was fear, primarily among parents of autistic children, that including those people who didn’t have “real” autism would take something away from them. The anger and the fear were all rooted in diagnostic criteria with little objective clinical difference. There was a lot of subjective perceived difference layered on top of the actual criteria.

Recently, I “tested” my therapist by participating in half a session with all my normal social mitigation behaviors consciously active and kept her talking in a highly “engaged” conversation that ranged only onto topics that would not require me to take too much attention away from my social management skills. I needed to understand how good they really were. I then debriefed and walked through what I had been doing. She had noticed a subtle shift, but people change all the time for all sorts of reasons. Unless it’s a major or dramatic change, there was no reason for her to make particular note of it. She told me that even in my most vulnerable and open moments I rarely present in an obviously “autistic” manner. Atypical? Sure. But I’ve so thoroughly internalized and habituated my skills that they never completely stop working as long as I don’t fully lose control in an actual meltdown or shutdown. And I’ve not had a full meltdown since I was hospitalized thirty years ago. I also manage to withdraw enough to keep full shutdowns from occurring where people can see them. Partial meltdowns or shutdowns? Sure. But I manage that aspect as actively and habitually as I manage social presentation. So when I described myself as one of the “optimal outcome” group in my earlier post, I was not stretching the truth. My therapist said it’s clear that I fit the criteria, but that would be difficult to tell from observation and tests alone. It only becomes obvious from the details of my childhood history and the things I share about my own experience. The tests catch pointers, clues, and indications, but are not independently sufficient for me. Actually, they probably aren’t enough to diagnose anyone. But they give more clues and indications for many people.

My therapist then joked that I had never set off her “Aspie radar” which is usually pretty good. She then paused, and told me that of course I couldn’t have been diagnosed with Asperger’s under DSM-IV. My clinically significant delays in general language would have excluded me from that diagnosis. I also had some other features from the section left out of Asperger’s, so Autism would have been the more appropriate diagnosis anyway. And that, of course, is one of the reasons they were merged into a single diagnosis. Studies showed that language delay was not particularly distinctive in autism and had no predictive value. It was as common for autistic children to develop normal or superior language after an early delay as it was for non-autistic children. And autistic children with no general early delay could later experience regression in language. Language delay is no longer a diagnostic criteria at all for that reason.

And when I considered that information, I was completely comfortable being excluded from the “Asperger’s” group. I understand that with the background of “Kanner’s Syndrome”, the creation of a different diagnosis was the only avenue available at the time to expand the scope of autism and include many people who had been excluded before. But that distinction led to what I perceive as an unhealthy division within the autistic community itself. And much of that seems to flow from a perceived stratification. There’s a hierarchy of sorts in play that acts to privilege the “gifted” Asperger’s group. I don’t believe the value of people lies in their utility. In a hierarchy of that nature, I would rather be included with the group on the lower rung.

And it’s in that same vein that I don’t wish to separate myself from other disabled people. I may not experience their challenges or fully empathize with the exclusion, isolation, and despite they face, but I can relate. And I will choose to stand with them. My mind also relentlessly checks to see if I’m distorting or ignoring reality. It won’t let me pretend that I don’t require accommodation and have always needed accommodations. The fact that I’ve often been able to negotiate enough accommodation to survive and even excel in some settings doesn’t change the fact that I actually needed them. And I needed them because I do and have always faced substantial limitations in major life activities. The difference is that I now know why I needed them and it wasn’t because I was weak or broken.

This post represents some of the dynamics I’ve observed and felt. It’s not meant to be comprehensive, but I’m curious if anyone sees a major aspect or factor that I’ve missed. I know very little about the social sciences in the area of disability; I’ve mostly been learning specifically about autism and that’s likely to continue, but I’m sure my scope of exploration will expand over time. If anyone has anything to add or recommend in that area, I would be very interested.

I’m autistic and disabled.

And I have no problem claiming either label.