There’s been a lot of discussion about whether or not those on the autism spectrum should be included in the DSM or treated as a diagnosable condition. Silent Wave has one of the best and most comprehensive posts on this topic. I’ve been mulling the topic for some time. I think I have something of a contrary perception, but only on certain aspects and approaches. I’m still not sure I can reduce those thoughts into something coherent and understandable, but I decided it was time to at least make the attempt.
First, I do want to be clear. Autism is not a disease and is not communicable, therefore by definition it can’t be any sort of “epidemic” as we often hear bandied about. It’s also true that autism spectrum disorder doesn’t really fit well in Axis I of the DSM, but it also doesn’t fit anywhere else. The DSM doesn’t really have a way to categorize neurodevelopmental differences. ASD is placed in Axis I because it doesn’t fit anywhere else, so that becomes the catch-all Axis. While there may be environmental issues involved with flipping specific genes associated with autism, in this instance those factors are ones impacting sperm and eggs prior to conception and perhaps some environmental factors in early fetal development. By the time we are born, our neurology is already well-developed. And it’s also true that autism, even though it’s uncommon, appears to fall within the normal range of human development and seems to have been pretty consistent within humanity for a very, very long time. From an evolutionary perspective, that long-term consistency is interesting, though I’m not sure any conclusions can be drawn from it. Still, autism is not a disorder you develop after birth and it’s not something that can ever be cured or eliminated. The level of support a person requires can vary and, in certain circumstances where their environment is sufficiently managed and structured and there aren’t any other issues such as intellectual disability, an autistic person may not require any support at certain times in their life. In those circumstances, they would no longer meet the diagnostic criteria for ASD if evaluated, but their neurology would still be autistic.
However, with all that said, I don’t agree that we don’t need some sort of formal mechanism for identifying and diagnosing autism. And I think that becomes more evident by exploring some of the places where the analogy with the LGBTQIA+ community used in Silent Wave’s post breaks down. I do want to be clear up front that I don’t consider myself a member of any segment of the LGBTQIA+ community. At most, I’m a little gender non-conforming and the way attraction interacts more with emotional intimacy than gender for me is difficult to express, but I’m generally a white, cis, straight male with all the enormous privilege that entails. I say that because I invite criticism and correction should I write anything incorrect or even problematic. I have had numerous family members and friends who are a part of one segment or another in that larger group going back much of my life and I’ve tried to listen and learn from the things they’ve told me. But I recognize the risk in trying to express things you’ve learned from others.
I want to say that it’s not clear to me that the LGBTQIA+ community is really one community at all as much as a collection of communities marginalized by our larger society for their sexual and/or gender identity. It’s my observation that many lesbians and gays reject bisexual identity, the trans community tends to be pushed to the outskirts of the community, asexuality and agender or nonbinary identities are often outright denied, and actual intersex individuals tend to be forgotten. Moreover, it doesn’t appear to surprise anyone in that community when white, gay men throw the rest of them under the bus. Gender identity and sexual or romantic orientation aren’t even really the same thing. I do find it interesting that at least one recent study has found a much higher correlation with autism among the transgender community, but that’s more of a rabbit trail for a separate post than germane to this one.
And while Silent Wave was correct that homosexuality or same sex attraction was removed from the DSM, the implication that the LGBT community no longer was included in it was incorrect. Gender Dysphoria (renamed from Gender Identity Disorder) remains very much a condition classified in the DSM. I won’t pretend that’s not problematic and I’ve read much discussion about it by members of the trans community, but it nevertheless remains the primary existing avenue for medical treatment and other supports. Therefore the analogy really only applies to sexual orientation, not gender identity.
And focusing more narrowly reveals one of the issues with the analogy. Sexual attraction is something that people can work out for themselves. Even when cultures try to suppress it, it tends to overwhelm societal taboos. For many people, it’s such a primary force that even when individuals work to suppress those urges, they tend to drive behavior. It’s not something most people need help identifying. It can be a confusing and difficult process, but it’s a single, if pervasive, aspect of your identity and one that is often a driving force for many people.
The neurological differences associated with the autism spectrum, by contrast, while similar from individual to individual, tend to manifest in variable ways. The autistic aspects of our brains are intertwined with all our thoughts and many of our behaviors. We are sufficiently alike that we can understand each other and commonalities can be noted, but we are also as different from each other as unique individuals can be. Absent an available and detailed diagnosis, I believe we would fall back into the situation that held for most of my life, where we were misdiagnosed or completely unidentified. Actually, that remains more common for autistic adults even today, though awareness is slowly growing.
Many of us also need the help and guidance of a professional with the appropriate experience when we discover something that makes us think we might be autistic. And, at least in my case, it’s not because I needed a “neurotypical” to explain to me how my brain works, though discussing that aspect with a neutral professional post-diagnosis has been helpful. Rather, I did not truly understand how an allistic brain worked or how my mind specifically differed from their minds. Of course, I knew I was different. I had known that my whole life. I had been trying to work out how my brain was different my whole life. My coworkers had been discussing the ways I approached things differently for decades. But nobody ever associated those differences with autism. Autism remains uncommon in the human population and varies enough in expression that it’s not necessarily obvious except in retrospect.
And yes, with the information now available online, there is a lot that can help people make some determination for themselves that they are autistic. But that information only exists because there are plenty of diagnosed adults providing a baseline and publishing their own experiences. Even with that information, I know I never would have truly accepted the idea absent a formal evaluation. Without the input from someone with a substantial background in psychology and neuropsychology who was also experienced testing and diagnosing autistic adults, my mind would have relentlessly deconstructed and attacked the idea. That’s simply how my mind works. And a formal evaluative process requires a potential diagnosis and diagnostic criteria for it.
The above also illustrates another point where the LGB and ASD analogy breaks down. The incidence of something other than normative heterosexual attraction is an order of magnitude greater than that of autism. Autism is both trickier to recognize and identify correctly and much less common. The only other autistic adults I myself know are ones I’ve met online. And even though there is a lot of information available online, it’s largely invisible until or unless something leads you to specifically search for it. And that will always be true. We’re just not a large enough portion of the population to be substantially more visible. And it’s the existence of a diagnosis with specific criteria that creates the patterns that can be found. Without that binding element, it becomes grains of sand lost on the beach of the Internet.
It’s also not true that the mental health and coping issues those of us who are autistic experience just by living are the result of comorbid disorders or conditions rather than a direct result of being autistic. I happen to be the perfect illustration of that truth. The diagnostician who evaluated me specifically tested and evaluated me for the disorders that are most often comorbid with autism as well as a general screening for any of a wide range of disorders. When discussing the results with me, she called me the most “purely autistic” person she had ever evaluated. I am not intellectually disabled. (If anything, I met the criteria for giftedness as a child.) I do not have ADHD. I do not have OCD. While I have a base level of anxiety, it’s related to 51 years of actual experience of failure interacting with others and probably a heightened amygdala response and does not meet the criteria for an independent anxiety disorder diagnosis. And yet I have struggled and continue to struggle with life. I live in an allistic world and I have to interact with it every single day. I do need specific counseling and help to better manage that interaction and its impact on both myself and those around me.
I’m also not comfortable with an underlying assumption I sense in the desire to be removed from the DSM, that there’s something harmful or wrong about including the autism spectrum in the DSM. The argument that autism lies within the “normal” range of human neurological variation implicitly also argues that everything else in the DSM somehow doesn’t. It seems to flow from a sense that there’s something “wrong” with having a mental health condition. People trained in psychological and neuropsychological testing are the professionals best equipped, at least as things currently stand, to diagnose autism. Their manual is the DSM, so it’s the appropriate place for the diagnostic criteria. And people with other conditions diagnosed under the DSM also fall within the normal human range of experience and variation. I would never be comfortable asserting anything else.
So yes, there are certainly problems with societal attitudes toward autistic people. There are also major issues with attitudes toward anyone with any other sort of mental health struggle. I don’t think we should try to resolve our problems by separating ourselves from everyone else with conditions delineated in the DSM. That more closely reminds me of the way different racial and ethnic groups in the United States worked to acquire “whiteness” instead of actually addressing the underlying problem with racial attitudes here.
The diagnostic criteria, the process of evaluation, the way the diagnosis is applied by clinicians, and the widespread lack of supports for autistic people all demonstrate problems and issues that need to be addressed. But even though progress is somewhat glacial currently, there have been improvements. The DSM-V diagnostic criteria are better than the DSM-IV criteria. And those were light years ahead of the DSM-III criteria and available diagnoses. The issues with obtaining evaluations reflect systemic issues in mental health care and more broadly in health care in general. There’s a lot of work to be done and progress that needs to be made. But removing autism from the DSM would not be progress. It would be a huge step backwards.
I’m not sure if I was really able to capture my thought process in writing. I’ve read my post now multiple times and aspects of it still don’t feel quite right. But I can’t think of a way to improve it, so I’ll let it stand as written.