Who Am I?

Finale – Week 7 of #TakeTheMaskOff

Posted: September 3rd, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Finale – Week 7 of #TakeTheMaskOff

This week marks the end of the official social media campaign for #TakeTheMaskOff. It does not mark the end of autistic engagement with a world where we are more often rejected than accepted. I have no story of personal impact from this campaign. I’ve perhaps thought more deeply about the topic areas, but I’ve had no revelations or dramatic changes. I did not expect any such experience. I’ve been surviving in this world for 53 years. My tools and techniques are evolving and improving, not transforming into something radically new.

Rather, I’ve chosen to add my small voice to this campaign in the twin hope that non-autistic or allistic readers might understand our experience at least a little better and that other autistic people might feel a little less alone. I felt so alone and so different from everyone for so very many years I know how hard that is to bear.

I have no expectation that our world will suddenly change, but I have to believe it’s possible to improve allistic understanding and acceptance of our differences. No matter how hard we try, we can never bridge the current gap alone. If we could, we would. The “best” we can currently achieve by current measures, our so-called “optimal outcome” boils down to nothing more than not being observably autistic to a removed third party who is not directly engaging us. Even that degree of masking, desperately trying to make all aspects of our movements, body language, expressions, tone of voice, and words conform to the always incompletely understood expectations of others, is never perfect. I know because I taught myself how to do it.

I could never, however, look and act “normal”, whatever that may be. And don’t tell me that there’s no such spectrum as “normal” and that everyone feels different and isolated at times. My therapist, who sees many such allistic people, tried to say that. And it’s simply not true. I understand that nobody can clearly define those boundaries of “normal”, those things which fall in the range of acceptable variation, versus the things that are not. I’ve often wished somebody could because I felt if I actually understood the rules, I could find a way to more closely adhere to them. But those rules exist in every human culture. And they are enforced, often without thought or intent but merely in reaction. Most people absorb them over time, especially as young children, so the rules all seem obvious and automatic. The social rules and nuances feel “natural” to allistic people. I didn’t and don’t simply absorb them and my “natural” behavior and reactions do not conform to them. I had to learn the rules through observation and experience, mostly as a child, as best I could. And violations of those unspoken, unwritten, and often unacknowledged rules mark you as less than human to other people.

Autistic masking is about avoiding harm and seeking acceptance. We all seem to have stories about both. I’ll mask less when I am loved, or at least not rejected, when I don’t. I’ll mask less when I can do so and still be safe. I’ll mask less when the world of people surrounding me grants me the freedom to be more visibly and outwardly myself, whatever that might be.

I’ve masked my entire life to one degree or another, or at least as much of my life as I can recall. I’ve worked at it semi-consciously, deliberately, and systematically since I was nine years old. That means I have poured energy and effort into masking for 44 years now. The only me I know is the one trying, and usually failing, to find a place among everyone else.

Coping Strategies – Week 6 of #TakeTheMaskOff

Posted: August 27th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Coping Strategies – Week 6 of #TakeTheMaskOff

The last several weeks of this campaign have been challenging ones for me in different ways. This week’s topic is more positive and lighter, but it remains another difficult subject for me. The focus is supposed to be on things that help you mask less, but I don’t mask less and right now I have no plans to mask less. I believe I would have to feel safer and more accepted than I do before I could risk it. My entire lifetime of experience is constantly running in the background of my mind, telling me how people react when my observable behavior or social responses stray outside the limits of “normal” variation. Even today, when my mask slips the reaction is at best confusion and more often negative in some way. I try to correct those reactions, but once people have constructed a narrative about my feelings, thoughts, and intent based on their own interpretation, it’s really hard for me to reverse it, especially since I struggle understanding how they have perceived me. I go from managing things fairly well to completely lost in a heartbeat.

I’ve noticed one odd thing since my diagnosis two years ago. Everyone seems to assume my ability to mask, to read and understand the reactions of others, however imperfectly, and manage my own behavior and responses are strengths. If I were also intellectually disabled, as is the case for many (the rates I’ve seen range from 40%-60%, though a more recent study suggests the true rate may be 15%-20%) of my fellow autistic human beings, I would not be able to hide my autistic traits. It’s true that I have the ability to hide in plain sight. And it’s true that there are situations where that has been very advantageous, notably employment. But the few studies I’ve seen that have included well-being in their measures have all found that in aggregate those of us who are better able to mask actually experience lower overall well-being than those of us who can’t mask their autistic traits. Obviously individual experience covers the whole spectrum whether you are intellectually disabled or not, but the aggregate results are telling. I appreciate my intelligence. It’s as much a part of who I am as my autistic aspects. Given that I have the unexplained but often observed in autistic people large gap between verbal and spatial intelligence, my autistic brain even shapes the way my intelligence is expressed. But hiding significant parts of myself from everyone around me every minute of every day has been more of a drain and sometimes crushing burden than a benefit, especially since I’ve always longed to be accepted and loved.

Even if I felt safe enough to mask less, the reality is that everyone in my life knows I can mask, that I can fit in to some degree, and that I can look more or less normal. And it’s difficult for anyone to understand why I might not want to do so or how hard it can be. I now know that it’s all mostly effortless for them. Everyone struggles from time to time in certain social situations and they probably believe that’s what it feels like for me. It’s not, of course, but I think you have to be autistic and masking to truly understand how it feels and how difficult it can be.

So what can I do? While I’ve masked pretty much my whole life, I never knew what I was masking before my diagnosis. Notably, I didn’t really understand that the experience of other people was so different from mine. I thought they experienced the world and did things more or less the way I did, but for some reason they could manage it all a lot better than I could. Mostly I thought I was broken and I was trying to hide that truth from everyone. That’s what I was masking. But I had no idea what precisely was broken, so my efforts were at once all-encompassing and scattershot. I expended energy in all sorts of directions and spent every single second trying to keep up with … everything. Combine that with my cPTSD hypervigilance and simply existing each moment required enormous effort.

My ASD diagnosis provided an explanation and a framework. I could learn where my differences really were. I could perceive my efforts through that lens. I could better see the things that were helpful in certain situations and the things that weren’t. While I may not mask any less, I believe I do so more effectively today, in the ways and circumstances where it’s actually needed. I waste less energy randomly flailing.

I’m also working to be a little less demanding on myself. Over time in therapy I recognized the informal accommodations at work I had long negotiated, over which I worried every day, and about which I became highly stressed any time it was suggested they might change. In other words, they were never simply my preferred working conditions. They really were accommodations that had allowed me to be successful in my job. So I formally documented them as accommodations through our HR processes. Nothing changed in my actual working conditions, but it removed one source of worry and stress. It gave me one less thing to constantly manage.

I consciously find ways now to manage sources of sensory overload. For me, much of that is tied to vision with touch next on the list. I bought night driving glasses and they help a lot. And sometimes if the inside lights are bright I’ll keep my sunglasses on, ignoring the voice in my head screaming about it being “weird”. I mostly don’t wear clothing that isn’t comfortable anymore instead of forcing myself to endure it and pretend it doesn’t bother me. I wear my headphones even more openly and constantly now than I used to. It’s a bunch of small things, but in aggregate they help.

I carry a smooth, metal fidget spinner. The sensation of spinning it even in my pocket and letting it hit my fingers is soothing. And the smooth metal also has something like a worry stone feel. I notice more when parts of my body are moving and instead of automatically suppressing it every time, I manage or redirect the movements but still try to express it in some way. I allow myself to enjoy things like spinning or once again letting my body move to music. Agony Autie calls it “stim dancing” and that term really fits for me. It saved my life in the late 80s during a really bad time in my life, and I also seem to have a bit of auditory synesthesia. Especially when surrounded by it, I feel music on my skin and in my muscles. It’s hard to describe. And again, it’s only since my diagnosis that I’ve slowly understood it’s not really the same thing most people mean when they talking about “feeling the music”.

So I’m not working to mask less. I am trying to mask more effectively with less unnecessary drain on my resources. And I’m trying to be kinder to myself in different ways. I can mask and still reduce sensory overload and consciously allow myself to stim in ways that aren’t overtly autistic to those around me. And I can let myself respond without restraint when I’m alone. That’s really more of an aspiration right now than a reality. Controlling my appearance is far too deeply ingrained in my psyche for me to ever simply stop. But I’m trying to relax my guard a little at least.

Diagnosis and Masking – Week 5 of #TakeTheMaskOff

Posted: August 20th, 2018 | Author: | Filed under: Autism | Tags: , | Comments Off on Diagnosis and Masking – Week 5 of #TakeTheMaskOff

What impact has my diagnosis had on my masking? That’s the question posed this week. For some reason my mind wanders to Robert Frost’s poem, The Road Not Taken. Most people know the poem only from inspirational and individualistic quotes about choosing the road others avoid and the difference that can make. That is not, of course, what the poem says at all. I’ll include it at the end for those who might like to read the entire thing. It has a whimsical quality and is full of twists and turns. In the present moment, our traveler is torn between two roads, equally fair, both perhaps worn the same, yet both untraveled that morning. It bounces back and forth down different avenues of observation and speculation in that indecisive moment. There’s a sense that whichever path is chosen there is certain to be at least some regret. The closing, most often quoted lines are not set in the present moment, though. The traveler recognizes that in some distant future they will look back, define the road they chose as the one less traveled, and build a story about how that choice made all the difference in their life.

Our stories are never simply recitations of fact. We are creatures who build narratives. Events in our lives have meaning to us because we imbue them with meaning. We connect them. We are not objective, outside observers. We are participants in the tales we tell. And the ways we choose to tell them shape ourselves and often those around us. The lightness of Frost’s poem carries within it our traveler’s awareness that they are in part a character in the story that will one day be told by a future and perhaps very different version of their own self. We exist in the now. We share a thread of continuity with the versions of ourselves we have been in the past and we trust that thread will be maintained by our future versions. But that future version will not be precisely us, right now in this moment, any more than we are the same as those different versions of ourselves in our past.

Moreover, our memories are not cameras. Even the experience of our senses, the data that informs what we think we know about the world around us, is heavily shaped and interpreted by our brains. The memories themselves collate and capture and often try to make sense of that information. They fill in the missing pieces. They drop things that don’t fit. They revise and reshape. Every single time we access a memory, it is read and written anew, as if it were a new memory. Frost is right. Even though in the present moment we perceive the roads as equal choices with little to distinguish them, in the future we will remember them as markedly different and imbue meaning into the choice we made.

How has my autism spectrum disorder diagnosis impacted my masking?

It has made all the difference. And none.

I can only speak as a late diagnosed autistic person who went from no awareness at all to assessment and diagnosis over a pretty short period of time in what felt like a whirlwind.

That event altered the narrative of my life by giving meaning to things I had felt were scattered and disconnected. It explained things I had never understood and which I had often tried to push to the edge of my consciousness. My diagnosis provided a framework I had lacked my entire life. It changed and is continuing to revise the story of Scott as I put the different pieces in place. It has given me access finally to perceive and hopefully work through things that are not directly related to autism. That may sound strange, but autism describes the way I experience … everything, including trauma. I have an autistic brain. That self-knowledge doesn’t just explain my autistic experience. As I work through my stories in that light, I can finally see and begin to understand all the other things as well.

For we are always creatures who tell stories, of all sorts, but most especially about ourselves. My stories have been shifting and changing. I’m aware of the process and it doesn’t bother me even though I understand it bothers many when it happens to them. I’ve been trying to piece together coherent narratives my entire life. I’ve never found them to be static or, for that matter, complete. And that means I can only write as the person I am now, remembering past events in light of the information I have in this moment, not as the person who actually experienced those events. I see my past masking so much more clearly now than I ever did when I was the person doing it in the moment.

I have little idea, really, who I am and what I want, beyond acceptance and love. I’ve striven for those two things from my earliest memories, with all my will and ability, and I’ve focused my efforts on discerning which things are acceptable to do, acceptable to want, and even acceptable to be. As I told my therapist, there are limits to acceptable deviation from cultural norms in behavior and interaction that most will accept. I’ve worked really, really hard to find a way to stay within those lines, or at least manage perceptions well enough so people mostly believe I do.

My diagnosis has given me the option to turn the accommodations I’ve long informally negotiated at work and over which I’ve incessantly worried into formal accommodations. That removes one source of stress. I’m somewhat more aware of my masking in the moment now and better manage my energy or take actions to reduce some stress. Diagnosis allows me to be more intentional in my efforts instead of flailing at everything.

I would not, however, say that I mask less in any situation or interaction. I think I’m better at some aspects of masking now and worse at others. Some things I’ve done worked better when I wasn’t really aware of them as I was doing them.

My diagnosis altered my whole world and cast all the stories of my life in a new light. That process is ongoing and touches every part of who I am. My diagnosis did not, however, change the world in which I live. It’s no more safe today to stray outside the boundaries of “normal” than it was when I was a child working diligently to fix myself. I do not feel any safer today than I did then.

I’m working on … everything. That’s really all I can say with any certainty.


The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Autism Awareness

Posted: April 1st, 2017 | Author: | Filed under: Autism | Tags: , , | 4 Comments »

A year ago I was still in the process of deciding to pursue an assessment. I don’t recall even being aware myself of various autism “awareness” activities last April or any previous April. I screen a lot of things out, but I also absorb a lot of information. I didn’t have an opinion, positive or negative, about any past efforts. The various awareness efforts were completely off my radar.

I also don’t believe I was unusual in that regard. I had heard some of the autism scare stories. I knew about the vaccine controversy, of course, and how thoroughly it had been debunked. I had seen one or two representations of “Asperger’s” on TV (in dramatized forms that looked nothing at all like me). And … that was about it. I don’t recall noticing anything about an awareness month. I had never heard of Autism $peaks. My online sphere didn’t really intersect with the rich online autistic community.

So I don’t believe the only issue we face is a need for greater acceptance. We do need greater awareness since acceptance rarely flows from ignorance. But we need accurate and informed awareness. Tales of the suffering endured by parents of autistic children aren’t helpful. My attitude as a parent has always been captured by Sidney Poitier’s character’s response to his father in “Guess Who’s Coming to Dinner?” Our kids owe us nothing. We chose to have them. We owe them our best effort to give them a start and a place in this world. And that’s true no matter how hard or difficult it is. That’s the price of real love, especially the unconditional love we should have for our children. And our kids do not owe us for any sacrifices we might have made raising them. As parents, that’s what we were supposed to do.

Of course, if you view anyone as a “burden” that perspective becomes a self-fulfilling prophecy. I refuse to believe that most parents of autistic children fly the martyr flag, just some of the noisiest ones. Unfortunately, the noisy ones keep having their voices amplified.

I also don’t think we need awareness in order to fund the pursuit for a “cure”. Autism is neurodevelopmental. My brain formed along autistic patterns in the womb. I have no non-autistic identity even though I only recently discovered that the way my brain functions has a name. If someone “cured” me of autism, they would effectively wipe me out of existence. Moreover, research is increasingly revealing how deeply intertwined autism is in humanity as a species. Autism develops from complex and varied combinations of genes, at least some of which are also responsible for increased human cognition. In certain combinations and expressions, the dial gets turned farther than it typically does, but autism appears to fall within the range of normal human variation. In order to prevent autism, you would have to alter the broader human genome to exclude autistic combinations and expressions. In order to “cure” autism, you would have to change a person’s genes, the epigenetic expression of their genes, and somehow alter the developed structure of their brain. Thanks, but no thanks.

We do need the broader population to understand the range and variation of autism. We need informed awareness. Awareness does not automatically lead to broader acceptance, but it’s a necessary step. And right now, there is a deficit of informed awareness, at least in the US as a whole. I’m sure there are areas and pockets with greater awareness, but for the most part any awareness that exists is poorly informed.

Of course, it doesn’t help that the most broadly visible autism organization promotes misinformation and uses scare tactics to raise money, most of which goes to nothing useful.  Since much of the awareness that’s currently out there is negative or wrong, we’re operating at a deficit and I don’t see any quick or easy way to change that reality. It looks like a long uphill slog to me. Still, uphill struggles are nothing new to me. That pretty much describes most of my life. And since I can’t change the way my brain works (not that I would be inclined to do so if I could), I’m in it for the long haul.

Autism Spectrum Disorder as a Diagnosis

Posted: November 26th, 2016 | Author: | Filed under: Autism | Tags: , , , , | 4 Comments »

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.