Autism Spectrum Disorder as a Diagnosis

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.

Posted in Autism | Tagged , , , , | 2 Responses

How Racism Really Works

In the wake of the election, in which His Fraudulency (to borrow the title bestowed on Rutherford B. Hayes) won the electoral college while losing the popular vote in dramatic fashion, I wrote a thread on twitter about racism and how it actually works. I thought it was particularly apropos since His Fraudulency ascended to his golden throne by explicitly invoking and inciting neo-nazis and other deeply racist segments. However, many of his white votes came from segments that, strangely, do not consider themselves racist, including white evangelicals. Since the latter only exist due to explicit racism, that’s a little odd. Perhaps they even believed their recent disavowals of their racist roots. This election laid those roots bare, however, for the world to see, even if white evangelicals have eyes, but cannot see, and ears, but cannot hear. They have mouths and can speak, but those mouths are the mouths of vipers.

At at any rate, I wrote this thread for those honorable souls who believe they are not racist despite voting in overwhelming numbers for his Fraudulency, the Donald. It received a fair amount of attention on twitter, so I storified it.

This is the twitter thread for those who want to read it in its original form and the interaction it received. The storify is below. All my fellow whites, including the white women who especially let us all down, know that I’m speaking to you. If you voted for Trump, you are racist, at least in the structural and systemic sense, and this thread definitely applies to you. You are no less culpable than the whites who benefited from apartheid in South Africa, even if they didn’t explicitly support the regime. And if you didn’t vote for Trump? You still probably have a racist thread or two permeating your thoughts. It really is the air we breathe. It requires constant vigilance and effort to combat. If you aren’t fighting it, then you’ve succumbed.

 

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The Struggle to Be

My counselor asked a question yesterday that stumped me. “If you had a magic wand, what you would want your life to be like?” Those sorts of questions have always been a challenge for me. I can imagine, even vividly imagine, all sorts of alternatives. In fact, I did that as a child, picking a point in the past and then focusing my mind on the idea that everything since that point had been a dream. But such questions always have a sense of unreality to them for me, especially the older I’ve gotten.

This is the life I have. A ‘me’ who had a different life wouldn’t actually be me. It’s a version of the disconnect I’ve felt when I’ve heard other adults who were teen parents say they regretted it, missed the life they could have had, and wished they had done something else. Was it hard being a teen parent? Sure. Sometimes it was incredibly hard. But saying I regret it or I wish it hadn’t happened feels to me like saying I wish my oldest daughter had never been born. In fact, if you follow the thread of my life, it’s basically saying I regret all my children. While I might have still had children, those hypothetical other children wouldn’t be the ones I actually have today. I deeply love all my children, and no matter how hard things have gotten, there has never been a day I’ve regretted their birth.

And the same is true of the rest of life. There’s good and bad. Some things are hard. There have been and continue to be struggles, but I don’t want a different life, per se, though I do want to live this one better. The bad things are just as much a part of who I am today as the good.

I was reminded of my blank-faced stare when my wife has asked me what I dream of doing now that the kids are grown. I enjoy discussing possible future trips with her. I enjoy doing things like the arts and food scene. But I don’t have a ‘bucket list’ or some similar set of dreams I need to achieve to make my life complete. And I have a hard time understanding the point, even though everyone around me seems to intuitively grasp it. If there’s something you want to do, start making a plan and then execute the plan. Until you’re ready to do that, what’s the point in creating a list? (Now lists that you actually plan to complete I totally understand, but that doesn’t seem to be what most people mean when asking about future dreams.)

Still, I stopped and gave the question serious consideration and, haltingly, honed in on one of my underlying struggles. I’m not really dissatisfied with my life. I want to improve my relationships with my older children. I need to work out how to relate better with my wife. I’m not a super social person, but I know I’ve been happier in the past when I’ve had at least one pretty close friend. That’s true even though it hasn’t happened very frequently and all such friendships have tended to fade for reasons I still don’t really understand. And my friendships have faded even when I’ve actually tried as hard as I could to keep them going.  While aspects of my job are extremely wearing, I enjoy the technical challenges it presents. I love learning and my job basically demands constant learning.

There aren’t really any drastic changes I would make to my life, magic wand or not. For the most part, this life fits me. That is, it would if I could actually live it. And it’s with that realization, I understood one aspect of my struggle.

It’s taking all the energy I have, and on some days more than I have, just to survive. Everything seems to require more effort. It’s hard to focus my attention without getting distracted. It’s hard to keep everything organized. And it’s harder than ever to limit the pull of things that aren’t part of what I need to do in that moment. Dealing with change and interruptions to routine are more difficult to manage now. It takes more effort to maintain an appropriate physical presentation and not do things that appear ‘odd’ to most people. I struggle more and more to process things I hear. The delays in my response are almost always noticeable now. Light is increasingly painful. Bright sun is barely tolerable even with my sunglasses and hats. Night driving makes it feel like headlights are stabbing into my eyes. And even in one on one social interactions, I find I often can’t keep up. Trying to catch all the social cues and provide the right responses has become incredibly draining.

Moreover, it’s been getting worse for a long time now, even though I had no idea what was happening. A decade ago I discovered I had sleep apnea, so I blamed my struggles on that. And I’m sure it was a factor, but it was exacerbating the problem, not causing it. Moreover, once it was controlled, things started sliding downhill again. Then I thought it was the damage I suffered as an undiagnosed celiac. And again, I’m sure that was a factor. Being sick and chronically malnourished will drain your energy and make life difficult. But it’s been seven years, I’m pretty much healed, and celiac disease is no longer a significant factor.

Yet I’m still hanging on by my fingernails. By the time I do the things I have to do each day, I’m so exhausted I’m asleep almost as soon as my head hits the pillow. (Staying asleep is another matter, altogether, but that’s not the point of this post.) I’m hardly managing anything more than the minimum I need to do to get by and even that’s a struggle most days. I’m so deeply tired down to my bones that even the thought of that next thing I need to do often fills me with dread.

Objectively, while crises still arise as they do for all of us, my life is actually calmer now than it ever has been in the past. It’s not like things have gotten harder and it’s taxing my ability to cope. Things have gotten easier. I’ve gotten healthier. And simply living life has gotten harder for me. Each day is a hill and the hills keep getting steeper with no respite and no end in sight.

I don’t know why simply being has gotten so much harder than it once was. But if I had a magic wand, that’s where I would apply it. Unfortunately, no such wand exists, so I’m left looking for more mundane responses. My tendency, of course, is to simply push through. I have a relentless will and I can and have pushed myself when I thought I had nothing left. The problem, of course, is that the well is finite. At a certain point, I can’t just bull through anymore. And I feel like I’m reaching a place where something has to give.

I have no answers, but I did come up with a response to the question and, I think, a revealing response. I pretty much have the life I want if I could actually live it rather than just survive it.

Posted in Autism, Personal | Tagged , , , , | 3 Responses

Who’s “In” and Who’s “Out” in the Autistic Community?

There’s an ongoing “discussion” in the online community of autistic people about whether or not those who are only “self-diagnosed” (meaning they haven’t been able to obtain formal assessment, at least at the current point in time) should be included. It’s often expressed as a question about whether or not self-diagnosis is “valid”. Personally, I dislike the language of validity applied to an individual’s identity. We are all “valid” human beings. I’m also more confused by the fight itself than an active partisan for either “side” in the debate. I can’t discern why it seems to matter so much to some people.

VisualVox, the Aspie Under Your Radar, wrote a post on the issue and I left a rather lengthy comment. Upon reflection, I decided I might as well turn that comment into a post of my own. You probably will want to read her thoughts as well, since in places I do reference them.

I’m pretty sure everyone agrees that if you’re going to seek any sort of official support, accommodation, or anything else from the larger NT world for your autistic needs, you’re going to need the official paperwork to support your request. That’s just common sense. I’ll note, though, that it’s possible to negotiate unofficial accommodation. Looking back, I did that for decades at work as an undiagnosed autistic. I would frame it in terms of whether or not something in my environment was interfering with my ability to produce at an extremely high level and ask to have it adjusted. Since the people I worked for always thought it was in their own self-interest for me to keep doing what I was doing, even if they didn’t understand it, they were generally happy to accommodate my ‘quirks’.

But nobody with a ‘self-diagnosis’ is going to be looking for any official accommodation, anyway, since they will obviously know the above. In most cases, my assumption would be that they are trying to understand why they struggle in certain ways and contexts and why they appear to interact with the world around them differently from most other people. And they may be looking for ways to ease or at least better manage their struggles. In order to do so, they are reaching out to the online community because, honestly, where else could any of us have turned? I certainly didn’t have any other ready avenue for learning ways to cope with aspects of being autistic even once I was formally diagnosed. And I needed the information from those online sources to even confirm in my own mind that I needed to seek an assessment.

So I understand what at least most people with a self-diagnosis are doing and it strikes me as perfectly reasonable. Where else are they going to turn if not to the online community? And given the barriers to assessment and diagnosis in different parts of the world and the high bar gender, race, class, and finances can create even in locations where assessment may be available, official diagnosis may not be an option even for people who want it. And honestly, it’s hard for me to imagine that there are many people who wouldn’t want some sort of official validation and confirmation if they could obtain it. I know I was going back and forth in my own mind beforehand. Even on the drive to discuss the results, I was trying to work out what I would do if she told me I wasn’t autistic. And I masked so well (automatically and unconsciously) even during the assessment process that if neurological results (such as the 30 point split in my two core “intelligence” scores) and childhood history (such as constant spinning and pacing and complete meltdowns eventually requiring psychiatric intervention when anything at all in my room had been moved) hadn’t clearly shown autism, I might have ended up with the new social communication disorder diagnosis instead. Since then, I’ve been able to peel back the masking and coping behaviors and find a lot more evidence for the Section B criteria.

So, given all that, I’ve been bemused by the vehement reactions in some corners of the online autistic community against those who are working from their own self-diagnosis. I can’t see any way those who are operating from a self-diagnosis are harming, threatening, or taking anything from those of us with official diagnoses. The online community is an unofficial place to provide and receive information, advice, and support. If someone needs or can provide that, it’s the appropriate place to be. Nobody’s personal story is invalid and it’s impossible to know who will be helped by it if you choose to share it. And in many ways, a self diagnosis is exactly that. It’s a personal story marking their current place in their journey. Honestly, an official diagnosis doesn’t really change that fact. Ultimately, I only have my story to share. Some people may find it helpful. Others won’t. And that’s okay. We aren’t all cut from the same cookie cutter mold.

CDHD (compassion deficit hyperactivity disorder) is a funny way to capture some of the reaction against self-diagnosed individuals. And a lack of compassion may be a part of it. Honestly, I don’t understand the fight response I’ve witnessed. In some cases, it seems that a person may have encountered some people online in the past who claimed an autistic self-diagnosis and were also jerks. I can see how they might end up lumping everyone with a self-diagnosis into the same pot if it happened multiple times or was particularly painful. Of course, there’s no real relationship between the two. All sorts of people in every category can be jerks. Heck, even otherwise helpful and generally nice people can have a bad day and come across as a jerk or even actually be a jerk. (Usually, if you aren’t a thoroughgoing jerk, you’ll recognize your jerkiness later and apologize for it.)

Other than that, though, I’ve been unable to discern what’s triggering the fight reflex for some people. Someone who has assessed themselves may be mistaken; our own lens is hardly free of bias and distortion. But that fact doesn’t harm or threaten me. Moreover, I have no way of knowing whether or not someone has been officially diagnosed unless they choose to share that information. It’s an unreliable mechanism for determining who you will read or interact with. The better gauge, and the one I’ve used in all situations, is simply assessing what they have to say and how they choose to say it. If I find it interesting or helpful, then it’s interesting or helpful. If I don’t find it interesting or helpful, I’ll look elsewhere. But that doesn’t mean that someone else might not find interacting with them helpful. If they are abusive, I will screen them out. I’ve been abused enough in my life. I don’t need to let abusive people in at this point and I’m much better at managing that aspect today than I used to be.

But nothing in that process has any connection whatsoever to the official state of someone’s assessment and diagnosis. I’ve been trying to puzzle out the underlying issue. It just seems like such a strange thing to fight about.

Posted in Autism | Tagged , , , | 2 Responses

What Does It Mean to Need Support?

In my final post, at least for now, on the DSM-5 autism spectrum diagnostic criteria, I wanted to touch on the other elements outside Sections A and B as well as what it means to me to need support.

First, it’s important to note that Section A and B criteria can be manifested currently or by history. That’s why my complete meltdowns at changes in my room at a young age requiring psychiatric intervention are directly relevant. Moreover, elements of the criteria need to be in evidence from a young age. The autism spectrum is related to the way our brains work and it’s pretty much the way our brains are formed in utero. It’s highly genetic, but there’s some environmental influence. However, the environment in this case is in the womb or even earlier. There’s no evidence I’ve found of epigenetic triggers after birth. Since so many of the symptoms relate to active behavior and social interaction it’s usually not evident to parents and others until a child is at least 2-3 years old. And it’s been shown that autistic people can regress and lose skills they’ve managed to learn or have certain behaviors intensify at different points in life.

In order to be diagnosed, the symptoms as a whole must limit or impair everyday functioning in our broader neurotypical world in some way. I’ve probably coped amazingly well from the perspective of some autistic people. I know the counselor I’ve just started seeing often appears pretty surprised at my accomplishments. But as I hope my posts have shown, my functioning has still been limited and impaired pretty severely. We can try to imagine a world where the ways our brains work would not be limiting, but that’s not the world in which we live today. And in our actual world, it’s hard for me to imagine how anyone could be autistic and not struggle to function in at least some areas of their life.

And finally, the disturbances can’t be better explained by something else. In my case, I surprisingly don’t have any comorbidities that reach a diagnostic threshold. It seems that most autistic people at least have something like ADHD as well. In discussing my results, my diagnostician commented that I came as close to “pure autism” as anyone she has ever assessed. So there’s no other explanation for my experience.

And that moves us to the other feature of the DSM-5 criteria. Once you meet the diagnostic criteria, a level of severity for both Section A and Section B must be assigned. And those move from simply “requiring support” at level 1 to “requiring substantial support” at level 2 to “requiring very substantial support” at level 3. And that’s quite a range. It includes people like me who can mostly function independently all the way to people who require around the clock care.

I’m diagnosed at level 1 for both sections, so I’ve been reflecting on what it means for me to require support. In order to do that honestly, I’ve had to revise my own self-image. I’ve always considered myself highly capable and competent and I am in certain contexts. But I’ve also never lived alone for any significant period of time and if I’m brutally honest with myself, it’s not at all clear how well that would go. I’ve always had people who, even in an abusive relationship like my second marriage, still helped me manage day to day life. I’ve relied on my wife for most of my adult life (28 years, 26 married) far more than I’ve ever admitted or acknowledged even to myself. Could I have survived on my own? Probably? I think? But without that daily support, life would have been immensely more challenging. My life was undeniably something of a mess when she entered it.

And I’ve also received informal accommodation in different ways at work. I never thought of it that way. I just considered it negotiating the environment that would allow me to produce more effectively. And the results have been … impressive, I guess. When I get the circumstances right, I can accomplish quite a bit, which is probably why my employer has usually been fine with my idiosyncrasies. Results really do matter in my field. But it wouldn’t be honest to say I could have done what I’ve done without the support from those informal accommodations. I truly needed them in a way, again, that I never really acknowledged to myself.

It’s humbling to realize how much you’ve minimized the support you needed in daily life and exaggerated your self-sufficiency in your own mind. Nevertheless, I have to acknowledge that the description “requiring support” and the details in the associated table form a pretty accurate description of my life.

I do need support. And I always have.

Posted in Autism, Personal | Tagged , , , , | 2 Responses

Social Deficits

The Section A criteria for Autism Spectrum Disorder in the DSM-5 address “persistent deficits in social communication and social interaction across multiple contexts” and all three criteria must be present for a diagnosis. However, these criteria address broad categories that can be demonstrated in a variety of ways. Since much of what I’ll likely write about my experiences in future posts will, I’m sure, reflect difficulties with social interaction, I’m not going to explore each criterion individually in separate posts. Unlike Section B, which took more digging into my history and peeling back my compensating and masking behaviors, the Section A criteria were pretty obvious very early in my assessment. My wife apparently scored them even higher in one of the initial assessment questionnaires than I did. Basically, Section A covers three broad areas.

  1. Deficits in social-emotional reciprocity
  2. Deficits in non-verbal communicative behaviors
  3. Deficits in developing, maintaining, and understanding relationships

Even after explicitly and intentionally studying the rules of social communication for decades, I still routinely miss the mark. Sometimes I can quickly cover the slip based on the other person’s reaction. Sometimes I’m completely unaware of it and only know because my wife asks me about it afterwards. She’s been doing that for most of the 28 years we’ve been together even though neither of us had a clue I was autistic. I was just “socially awkward”. I also rarely know the appropriate emotional response. It’s not that I don’t care. I normally care deeply, even around people I don’t know well. Rather, my own emotional response is difficult to decipher, so my affect rarely reflects what I actually feel. I try to approximate an appropriate affect for the situation, but my success varies. I also struggle to understand what others are feeling. And even when I can work out what I’m feeling and can make a reasonable guess of what the other person is feeling, I still struggle to work out the proper thing to do or say. I have a strong tendency to monopolize conversations or to complete withdraw from them because I can’t tell when I’m supposed to speak or allow another to speak. And group social conversations are almost impossible. I do very well in presentations and public speaking, but those situations have relatively little reciprocity.

I struggle all the time to understand body language and expressions. Despite my lifelong practice at body language and expressions, mine are still atypical at best. When I forget to manage them, they actually convey unintended meanings and emotions I do not feel to others. My eye contact ranges from very poor when trying to say anything that’s hard for me to express to overly fixated when I’m trying to appear normal. It’s rarely typical. I have difficulty controlling my tone and volume. It varies from overly loud to too quiet based on feedback from others. I usually can’t tell myself.

And relationships have long been an issue. The bullying I actually remember from childhood was from people I thought were friends. I remember those all too common incidents because they made no sense. I think I was mocked and bullied by kids who weren’t my friends as well, but none of that sticks in my mind. Those people didn’t matter to me. For instance, there’s the day in, I think, 2nd grade where two of my friends held my arms while the third punched me in the stomach. From my perspective, it came out of nowhere. And it’s one of a number of incidents that have been fixed in my mind my whole life because I could never explain them. Now I at least understand that I missed all the social cues leading up to those reactions. I still don’t understand them, but I know I never will. The information necessary for the full context simply isn’t anywhere in my memories.

I’ve also been taken advantage of repeatedly in my life, sometimes in some pretty negative ways, because of my difficulty in this area. I guess I’m a pretty easy mark for con men. Looking back, I realize my early romantic relationships (including my first two teen marriages) were even more unusual than I had thought. Despite enormous desire and effort on my part, my relationships with my children have had mixed results. I seem to have gotten better at it over time since my youngest two remain close. My relationship with my older children is not what I would like, but I still don’t know how to improve it.

And I realize I don’t have any of the very long-term friendships almost everyone else seems to have. Everybody I know who is roughly my age or older has at least one or two close friends going back decades, often to high school or college. They may live in different places and talk infrequently, but when they do they are as close as ever. And they stay in touch and have for all those years. My father-in-law still keeps in touch with some friends going back 50 or 60 years! Those sorts of friendships are such a common and broadly shared phenomenon, they even come up in casual social conversations. But when I take stock, I have none.

That’s not to say that I have no friends. I think I get along relatively well with people and can move past the casual acquaintance level to one where we share things more broadly. So I can cross that threshold, but most of my friends remain situational. That is, we share a particular social context and get along within the confines of that context pretty well, sharing things about each other that go beyond the immediate context of our connection. But we don’t really connect outside that context, and when the connection through that particular social context ends, we go our separate ways. A few times in my life, I’ve managed to forge a friendship that is deeper than a particular situational context and which has endured on its own for a number of years. And yet, those have all eventually faded for reasons I don’t understand. I know friendships come and go for everyone, but usually there are at least a few that endure for most people.

The one enduring, voluntary relationship I have is with my wife and I’m extraordinarily grateful for her. She’s helped me navigate life and it’s difficult to see how I would be where I am without her. I quite literally can’t imagine what my life would have looked like if she hadn’t been with me every step of the way. My life was certainly a pretty thorough mess before she dove in head first and with her eyes open.

The social issues are where being autistic really bothers me. At this juncture in my life, I’ve developed a pretty good set of tools and supports to manage the restricted, repetitive patterns of behavior and interest outlined in Section B. The diagnosis gives me insight to further refine and improve that toolkit and seek additional support where I might need it. But my very best efforts have mostly just managed to get me through social interactions. I’ve survived, but I certainly have not thrived. And I wouldn’t have tried so hard for so long if it didn’t matter to me. If anything, my diagnosis has opened my eyes and made me realize I haven’t even done as well as I thought I was doing. And I didn’t think I was doing very well at all.

Deficit can be seen as a hard word, but I experience my social issues as real deficits. So I think it’s also an accurate word.

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Overwhelming Senses

The final criterion of Section B of the DSM V involves sensory issues.

Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of the environment.

These vary a lot from individual to individual, but I haven’t run across anyone autistic yet who doesn’t struggle with sensory input to some degree. Personally, I have a mix of hyper and hypo sensitivities, but it’s taken a while for me to identify them. I’ve lived with them so long and adapted where I could so thoroughly that I didn’t even think of them as sensory input issues, per se.

Let’s start with the most obvious. I’m very hypersensitive to light and visual input. I wear sunglasses on cloudy days, dusk, and other conditions where most people don’t. And bright light always hurts even through sunglasses, squinted eyes, and a hat brim. If I have to spend an extended period in bright light with no sunglasses, I will develop a stabbing headache. I’m also not fond of the flickering of fluorescent lights and headlights when driving at night blind me and are painful. I’ve learned to look at the painted markings on the road to steer where possible. If there’s too much happening visually it can be hard to focus and visual input will distract me. I can’t talk on the phone while the TV is on. I have to close my eyes or turn away.

I’m both hypo and hyper reactive to sound. I have a tendency to tune sound out and I don’t process verbal information particularly well on first hearing. At the same time, I’m easily distracted by sounds and have difficulty filtering them out when, for instance, trying to work in the office or have a conversation in a restaurant. At work, I’ve used headphones since the early days of the walkman in the 80s.

I’m also hypo and hyper reactive to taste. A few things would make me gag in the past, notably what my diagnostician called ‘silky firm’ textures like mushrooms and tofu. I’ve since trained myself so I can eat them, though I wouldn’t say I really like them. But I also seek out strong flavors. As a child, I would eat whole lemons, rind and all, for the strong sour taste. (Actually, even as an adult, I would squeeze lemon into my tea and then eat the whole slice. I shocked my wife doing that on an early date.) I would also snack on a bowl of iceberg lettuce doused in red wine vinegar. I craved spicy, hot food as well and have always eaten the hottest things I could find. Once, as a ‘joke’, some other kids at a camp brought me back pizza with red pepper flakes piled under the toppings. They were disappointed when I didn’t even notice.

I didn’t think there was anything unusual about my clothing. Sure, I like clothes with no tags and have cut them out plenty of times, but doesn’t everyone? Tags are annoying. But after my initial assessment, I took stock of my wardrobe and realized pretty much everything I owned was 100% cotton, loose, and comfortable to the touch. I had to write my diagnostician back and tell her I had apparently unconsciously compensated for my sensitivity to harsher fabrics by never buying or wearing them. At the same time, I’m also pretty insensitive to changes in the surrounding temperature. I prefer cold to hot, but I’ve been known to wear shorts when others are freezing.

I mostly worked out ways to manage my sensory issues and they aren’t as severe as the ones some people have. But they are definitely an ever present part of my life.

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What makes an interest “special”?

The third Section B criterion for autism spectrum disorder in DSM V reads as follows.

Highly restricted, fixated interests that are abnormal in intensity or focus.

These are commonly referred to as “special interests“, which begs the question: What makes them so special? The parenthetical describes them as “excessively circumscribed or perseverative” or as a “strong attachment or preoccupation with unusual objects“. From my own life experience, which I’ll explain later, I think this also can be intertwined with the first criterion with unusual attachment and preoccupation with and use of common objects, but that stands out much less obviously as a diagnostic criterion. (As an aside, perseveration is one of my new favorite words. It captures so much about my life in a single word thought.)

Apparently, a fixation with things like train and bus schedules are stereotypical male versions of this criterion. One of a number of reasons women are severely under diagnosed is because their “special interests” tend to be in more commonly accepted areas and are distinguished more by their intensity and focus than by the nature of the interest. In that regard (and others), I think I lean a bit more toward the female phenotype of autism than the male.

The difficulty in assessing yourself, of course, is that it’s hard to see where the line between “passionate” or “fascinated” and “fixated” or “abnormal” truly lies. Still, it’s easy for me to see some of them. Science fiction and fantasy have been a lifelong fascination of mine, to the extent that I read little other fiction. (And I tend to only read non-fiction to gather information in an area that is currently one of intense focus for me, so that section of my library is … eclectic.) I’ve had family members chide me for not broadening my reading habits, and I’ve sometimes felt somewhat shamed and tried to read other things, or at least pretended I had. A nickname I acquired in 7th and 8th grade was “SciFi” because I would always have a book with me and would tend to talk about them. At length.

But my books mean more to me than that. I organize different sets in different ways. Some by the size of most of them. Series go together and authors generally belong with all their works. I like hardbound, but where I have paperbacks that go with other books, I’ll lay them on top of the hardcover volumes with which they belong. If you look at my library, it will appear disorganized and haphazard, but there’s actually a beautiful order in its arrangement. I read and reread books in my library, but there’s more to it than that. I need to have all the volumes in a series or sometimes all the works by a particular author, even if I don’t plan to immediately read them all. Any gaps will bother me until I fill them. It’s comforting to be surrounded by my books in a way I’m not sure I can describe. I like to look at them and touch them, but it’s soothing and calming even when I just feel them around me when I’m sitting and working at my computers.

I’ll cull books sometimes that don’t fit or have no special meaning to me, but I never voluntarily get rid of a book unless it’s incidental or a casual read I was given or picked up along the way. Once, as a young teen, my mother decided my “obsession” with my library was bad for me and made me throw out many of my books. That’s still as seared in my memory as many of the things that, to an external observer, appear much worse. It was awful in a way I’m not sure I can describe.

I’ve long had a similar interest in comics, though any time I let myself start collecting, it quickly gets out of control. I’m actually going to have to rein in that compulsion again since I’m getting far more than I have any time to read. But even when I’ve restricted myself from collecting any, I’ve followed the trends and happenings with my favorite characters and the universes they inhabit. I did that in bookstores and libraries and comics shops for some years. The Internet has made it much easier to stay abreast.

Especially when I was young, I was fascinated by games. I would play any game and seek to master its intricacies going back as far as I can remember. When I was in 5th grade though, I discovered Avalon Hill games. They were extraordinarily intricate with detailed, complex rules. My cousin and I would play out games and spend hours designing our own scenarios. We would play all night with no sleep. During that period of time, I even developed my own game which I remember my Dad thought was a fantastic game that should be marketed. Unfortunately, I don’t remember it at all and the board, pieces, and rules have long since been lost in the mists of time.

I dived into RPGs in 9th grade and loved them. I transferred that love to video games. In the 80s, my roommate and friends and I would gather around and play Bard’s Tale on my C64 for hours together. I stayed away from MMOs when they came out because I knew I would get overly absorbed in them. However, when my younger son was in 9th grade, he wanted to play WoW. I let him, but only if I played also so I knew what he was doing. And I loved it as I had suspected I would. After about a year we were both at max level and I joined an adults only raiding guild that was just starting. I spoke with the guildmaster and he agreed to let me son join as well. We kept our relationship quiet until he was 18 and approaching high school graduation. In that time, he had recruited for the guild and helped people improve gear, led raids and pushed his characters in directions they weren’t supposed to be able to go. (His main was a druid and during Burning Crusade, bears weren’t supposed to be able main tank raids. He was very successful at doing so even while leading the raid and coordinating everyone else.) The guild was very surprised when he revealed his age and that he was my son. When he became too busy to play as a sophomore in college, I forced myself to stop playing as well. I know how much games can consume me and I’ve learned to guard against it as I’ve gotten older.

My career has been in IT, which seems like one of the fairly common fields for those on the autism spectrum from what I’ve read. However, I wouldn’t say computers have ever been a particular, focused interest in an autistic sense. I’m fairly proficient in pretty much all major aspects of the field, though I generally tell others I always approach things from a programmer’s perspective first. I find the field fascinating. I enjoy that it requires continuous learning. I’ve accomplished some things over the years that even my highly proficient coworkers consider noteworthy and unusual. I “see” patterns which helps me both visualize ways things could tie together and work and helps me quickly perceive points of failure. But when I assess my life, computers have never held that same intensity of focus. I’m just good at it and generally enjoy doing it, which is the normal best case most of the time with a profession.

There is one corner case exception which actually has had an impact on my career and income. In the mid-90s, we were just deploying IP to replace x.25 at work and I was working with others to set a variety of things up on our development center network. It was alongside my development work, which is pretty normal for programmers. We’re always dabbling in something, or at least the good ones are. In the process, we needed to get DNS working properly for a variety of reasons. At that time, usage on our enterprise network was spotty and erratic and I started working with other technical people across the country to get their varying implementations better coordinated and integrated. Somewhere along the way, I became fascinated by the DNS protocol, its many permutations, its standards, its wire format, and all aspects of it. And as I developed the depth and breadth of my knowledge, I could make better suggestions and everyone just started implementing them. Before long, without any official assignment or authority, I had become the architect for our internal enterprise DNS. Everyone looked to me any time there was an issue, integration requirement, or design question. DNS, of course, has continued to grow over the years and I’ve remained deeply invested in studying it in all its variations, even though for most of that period it wasn’t part of my job.

However, a number of years ago, enhancements to the standard, new requirements, and various mandates created a situation where that DNS architecture at work needed to be redesigned from the ground up to meet those modern needs. Everyone our executives asked told them they needed me to do it right. So I was basically promoted into a job with that as one of my primary responsibilities. It’s not my only responsibility, of course. I always acquire additional responsibilities pretty quickly. For instance, I’m also the technical lead for our IPv6 transition PMO. But it is a major piece of my current job and the primary reason I got it. So in that instance, an interest that has been restricted and unusual in its intensity and perseveration also eventually proved beneficial in material ways.

I’m not sure it’s possible to truly explain to anyone who isn’t autistic the visceral intensity that accompanies an interest meeting this criterion. It’s not just that you really, really like it. There’s a need almost like a hunger that accompanies it. Removing or limiting the interest, which I’ve done sometimes as noted above, is still distressing even when it’s voluntary and intentional. Involuntary restriction can feel intolerable. It can also help immensely when you are overloaded. And again, it’s hard to explain exactly why.

Although I clearly see how this criterion matches my life, I have mixed feelings about “special interest” as the term to describe it. It’s the common vernacular, so using the term provides common ground with others. But the phrase seems to minimize it to me. This pervades your life and it can seriously disrupt it at times. Of course, part of the underlying reason for my reaction might be that I can’t help hearing Dana Carvey every time I see it.

 

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Mimicking Flexibility

This post continues my reflections on the diagnostic criteria for autism spectrum disorder from DSM V and how they relate to my own life. The second criterion in section B describes a need for routine and sameness.

Insistence on sameness, excessive adherence to routines, or ritualized patterns of verbal or nonverbal behavior.

This criterion was difficult for me to initially perceive in myself. In fact, I had this self-image of myself as highly flexible, adaptable, and able to function even as everything around me descends into chaos. But as I read descriptions and examples of this criteria, I specifically remembered the reason for my earliest visits with a psychiatrist.

I only vaguely recall the details. I know I was four or five years old. But I remember some of it and my mother has talked about it over the years. Around that age, I developed an extreme insistence on sameness in my room. Everything had to be in exactly the right spot. If anyone moved anything at all out of place, I would immediately notice when I entered my room. And I would have a complete screaming, on the floor meltdown. My reaction was so extreme, my mother took me to see a psychiatrist. They were able to work with me and through a process of very slowly introducing very slight changes, were able to help me to learn to tolerate changes without such an extreme reaction.

My childhood was a pretty chaotic one by most typical standards. At least, that’s what everyone usually tells me when they learn some of the details. It’s the only childhood I had, so it’s a bit difficult for me to judge. And I weathered the storm. In fact, I appear to have been less impacted by my experiences than many other people would have been.

But when I really examine my life and peel back the layers, there’s much less flexibility and resilience than shows on the surface. Instead, I insulated myself by developing what I’ll call “micro-routines” and following them pretty rigidly. By making the routines smaller, I could shuffle the sequence or timing and manage macro-scale disorder. So I had a particular routine to get ready for bed. I had a routine for emptying my pockets and a place for everything when I did. Instead of having a single route from start to destination once I could walk or ride a bike to different places, I would have smaller routes to get from one point to another point. So I could appear to be flexible about the route I took from start to destination. But really it was a sequence of smaller routes for me and I remember following those pretty strictly, even down to which side of the street or even the specific path I used for particular stretches.

If left to my own devices, I will still tend to eat the same food for breakfast, for instance, for long stretches of time. I tend to do things in a particular way and can push back against attempts to change it.

And when I reflect on interactions with my family and children, I realize that some of that rigidness has always been evident to them. I can’t count the number of times they’ve told me when going to an amusement park, shopping, or some event that we were just going to relax and go with the flow rather than follow a schedule. I always thought it was a strange thing to say since I considered myself flexible and easy-going. Apparently that has always been less true than I hoped and they knew it even if I didn’t.

I realize I don’t do things without a plan. Instead, I handle variability by developing multiple plans in advance. I develop variations within the context of an overarching plan. So, for instance, rather than a strict schedule at a theme park, I’ll start with the boundary plan. Here’s when we need to leave to get there. And this is roughly when we’ll plan to leave (which might be bounded by a dinner reservation). Then within that context, I’ll break the day up into segments and have alternative plans for each segment based on what everyone feels like doing. Most of the time, when they decide, I have a version of a plan I can swap in and use. And I’m always looking at where we are, the schedule of events, and proposing different variations for people to choose between.

That process of micro-routines and plans within plans allows me to manage the variability of life pretty well, I think. Even so, there are times when life lobs a hand grenade that can’t be planned or managed. When those occur, my approach completely changes. A couple of years ago, in the aftermath of my father’s heart attack, I was discussing my experience with my oldest daughter. When a true crisis hits, my perception of the world around me switches gears. Everything almost seems to slow down as I process and analyze what’s happening. My focus narrows at the same time as I assess the situation and determine the immediate action I need to take. I do that. And then I work out the specific thing I need to do next. And I do that. I keep stepping through each subsequent, specific task or action until the weight of the crisis begins to lift.

My emotional response during the crisis also recedes even further than what’s normal for me. I’m generally aware that the emotions are present and will likely erupt at some point in the future, but during the crisis I almost completely disconnect from them. I now know that’s related to alexithymia. I typically have to work hard to understand what I’m feeling, so it’s comparatively easy to switch that off during a crisis so the emotions do not paralyze or confuse me. It’s probably one of the few times I would consider alexithymia an actual benefit, though my lack of emotional response and affect in a crisis does tend to confuse others.

So I do have a clear childhood history that meets this criterion at a level of severity that impacted my ability to function and required intervention. Since then, although my level of rigidity and need for some sort of plan and routine is apparently more evident to those close to me than I imagined or even admitted to myself, my coping mechanisms seem to be good enough that there’s no significant negative impact in my daily functioning. The ASD criteria guidelines encompass both childhood history and current functioning. So I think I do pretty clearly meet this criterion even though it’s less evident than the other ones.

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Social Interactions, Misunderstanding, Stress, and Anxiety

Hopefully, anyone reading this post has developed some understanding from my earlier posts how being autistic impacts my interactions with others in both directions. In my posts of performance, I tried to walk through some of the ways, even without a specific label describing my difficulties, I was able to train myself from childhood to perform in something approximating a typical (that is, neurotypical) manner. I also explored some of the costs involved.

Even after writing about it, I had no idea how much pain I had stored up until it came out and surprised me when trying to explain things to a therapist I saw for the first time this past week. I found myself losing voice control, losing the linear thread of the events I was trying to describe, and with tears welling up in my eyes. I now understand my difficulties deciphering how I feel are the result of alexithymia. But I can still be surprised when they do visibly surface. And it’s strange. Even though I am clearly evincing the emotion, there’s a part of my brain that still doesn’t “feel” it.  I can “see” that I’m sad and hurt, in fact much more so than I knew, because it’s showing up through physical expression and in my own mental functioning. The therapist even said something like, “This seems very painful for you,” which is a pretty neutral observation. And my response was along the lines of, “It looks like I am, but I had no idea I felt like this until this (indicating the above) started happening.”

And the reasons for some of that pain are difficult to explain to anyone who hasn’t experienced it. That’s why I tried to walk through a more detailed description of a simple social interaction in my post yesterday. I wanted to convey some sense of how much effort goes into even the most trivial of such interactions (making a dinner reservation) and how easily it can still go astray. In and of itself, that one interaction cost me relatively little. But for most people, it would not have involved any noticeable effort at all. Also, everyone sometimes finds themselves in a socially awkward position. Most of the time, people step out of the awkwardness pretty easily, but even if not it remains pretty insignificant. Even so, hopefully that story offered some insight.

Now, take that one simple, highly structured interaction and start expanding it to cover every social interaction people have every single day. Expand until it covers every greeting or casual interaction in public, every conversation, everything required to shop, work, and engage with family and friends. Then try to imagine that you manage those interactions with some degree of conscious effort, that you review many of them mentally to check that there was nothing odd about them, and that you obsess every time an interaction goes badly trying to understand why. And however hard you try, however long you’ve studied or practiced, and however much you’ve prepared in advance, a certain percentage of those interactions will inevitably go awry. Sometimes you notice during it. Sometimes someone tells you afterward. Sometimes you realize it went wrong a day or two later. And you’re always aware that sometimes you’ll never know that an interaction went wrong.

Every interaction is like that.

Every day.

All the time.

I’m monitoring my expression, body language, and tone, trying to ensure they support whatever I’m trying to convey. I’m monitoring the other person’s body language for those clues that I’ve learned to identify over the years. I’m using scripts (or script templates) I’ve developed with a lot of practice. I’m slipping into different roles I know how to perform. While I am doing that, I’m trying to absorb, process, and remember the verbal information being conveyed. If you’ll recall my discussion of the results of my assessment, that’s actually one of my weaknesses. I simply do not retain much uncorrelated verbal information on first hearing, though I quickly improve with repetition.

It’s almost impossible to do that perfectly under the best circumstances, so misunderstandings on both sides are pretty common. Sometimes people react with anger because my tone, expression, or body language accidentally expressed an irritation or anger I don’t feel and didn’t intend to convey. Other times, something else goes sideways. There are so many variables in play that something goes wrong more often than not. I think I’ve gotten pretty good at damage control and am able to rescue or gloss over many of them, at least when I notice.

All of that creates a base level of anxiety that never fades. I’m anxious anticipating social interactions. I’m anxious during them. I’m anxious as I think about the interactions that have finished. Even on the days where nothing “major” happens, I’m expending enormous energy and managing anxiety just to exist in the world. And when a social interaction that actually matters to me goes wrong, I will become paralyzed by fear and anxiety, though I’m unlikely to show much of anything where anyone else can see it.

That’s a glimpse into one aspect of what it means to be autistic, for me at least. Other autistic people likely have a different daily experience. But the social exchanges that everyone else takes for granted are never automatic or easy.

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