Autism and Disability

Posted: September 17th, 2017 | Author: | Filed under: Autism | 2 Comments »

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

Words mean things! Really.

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

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

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

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

(B) a record of such an impairment; or

(C) being regarded as having such an impairment.

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m autistic and disabled.

And I have no problem claiming either label.


What? Me Anxious!?!

Posted: August 26th, 2017 | Author: | Filed under: Autism, Personal | 3 Comments »

My wife has commented that I never spoke about anxiety or being anxious before I was diagnosed. And she’s right, but it’s been an ongoing challenge to untangle and understand the reasons why that’s true. In part, the self-conception I’ve developed over the years and which I work hard to portray reflects more the goal of my performance than my reality. I’ve worked hard to appear flexible and easy-going, but that requires that I constantly manage the tension I feel when things do change or the unexpected happens. So I’ve developed an outwardly calm demeanor that more or less works. Family members, in particular, often see through it, but it generally seems more effective than not.

As I continue to discover what alexithymia is and how it operates for me within my personal experience, I also see that I can sometimes simply pick an emotional label for a given physical state whether or not it’s the correct label. Many years ago, I think I subconsciously decided the way my body and mind feel most of the time when nothing significant is occurring should be labeled ‘calm and relaxed‘. When I’m in that state, I’m ‘fine‘ by my standards. The key thought is ‘by my standards‘ since that’s the only perspective I truly knew. The discovery that my norms are often very different from the things most people consider typical has been an ongoing part of my process of learning what it really means for me to be autistic.

I have a number of family members who do struggle with anxiety. And it can spike and interfere with their functioning. They sometimes need medication or space to breathe to prevent it from overwhelming them. I thought I understood what they were experiencing, but I now see I was interpreting it through the lens of my own experience and not theirs. The wave of physical and mental internal experience I believed they were battling I equated to things I experienced which I now understand are better labeled ‘meltdown’, ‘sensory overwhelm’, or ‘shutdown’. A few times in my life, I’ve been so overwhelmed by the mental and physical barrage the result was much more severe than a meltdown, but did not result in a shutdown. From later descriptions I was given they resembled some sort of dissociative state. My body did not protectively cease active functioning as it more or less does in a true shutdown, but my mind was no longer truly processing anything coherently. Those were meltdowns on steroids that should have been full shutdowns, but for some reason weren’t.

The last such instance, when I was 22 years old, caused my neighbors at the time to call 911 out of concern and led to an involuntary admission to a psychiatric hospital. When I recovered, I went with the simplest solution they proposed (a suicide attempt) and followed all their protocols to quickly get released and off their radar again. I’m not unintelligent and I can be somewhat good at working systems when I am forced to do so. I’ve worked to never reach that point again and to date I’ve been successful.

It’s only when I was diagnosed and was able to relate my personal experiences to the more appropriate autistic terms that I was truly able to hear and process the physical and mental states most people equate with anxiety. They describe a tightening in their chest and an increased heart rate. They have a heightened awareness of their environment and a sense that everything is pressing on them. Perhaps their breathing becomes shorter or more rapid. They feel like they aren’t getting enough oxygen. Their mind starts racing. They freeze and can’t speak or move. Basically, it’s all the symptoms associated with a heightened amygdala fight, flight, or freeze response and more.

But those descriptive physical and mental reactions more or less describe my typical state, the one I had labeled ‘calm and relaxed‘. It spikes every time I have to confront a change or anything unanticipated and manage my reaction. At times sensory input starts to feel more overwhelming or changes suddenly and I have to pull things back under control. It spikes when I’m entering a new group or new situation, so I always have to breathe and adapt. Heck, things spike when I have to make a silly phone call. The sensations spike hard when I sense an interaction going wrong or when I’m suddenly confronted with the reality that it already has. I’ve discussed the racing thoughts with my therapist and they apparently aren’t the same sort of catastrophizing most people experience with anxiety. Instead, I’m either predicting or forecasting things that actually can and often do go wrong based on my own now extensive past experience or I’m stuck cycling through an encounter that did go wrong, especially when I can’t figure out how or why it went badly. That sort of state is again more or less a part of my ‘normal‘. As long as I have things under control and it’s not a meltdown or shutdown, I’m ‘fine‘ by my standards.

And so I came to understand that the correct emotional label for the way I usually feel is ‘anxious‘ and not ‘calm‘. In fact, when I pay close attention to the way people describe anxiety as it is expressed in their body and mind, I realize that my ‘normal‘ would be experienced as an at least somewhat debilitating attack of anxiety by most people. The sensations accompanying my ‘minor‘ routine spikes during any typical day would often be experienced as actual panic attacks by most people, at least if I’ve understood their descriptions correctly. And the things that are truly overwhelming and debilitating for me seem to lie beyond the experience and comprehension of almost anyone who is not also autistic.

So it’s not that anything changed with my physical or emotional state after I was diagnosed. Rather, I realized I was using the wrong emotion word and began using the correct one instead. I always knew my mind worked differently than people around me. Everyone has always been aware that I don’t act or react the same way as most people. But I never realized I actually experience and process the world around me differently than most people do. I related the words they used for their experience of the world to my experience and often used the wrong word or was harder on myself than I should have been. That’s the part of being autistic so many people don’t seem to grasp. This is the only way I’ve ever experienced reality. I have no basis or standard for comparison. The non-autistic experience is as foreign to me as I’m sure my experience is to most other people. Until I work it out through the process of deduction and elimination, I don’t even know what’s different in our experience and what is similar.

Some of the differences between allistic and autistic experience are actually differences in our metaphorical knobs being tuned differently. I was discussing repetitive movements with my therapist and the soothing and calming effect they have. They aren’t involuntary tics, nor are they compulsions in a clinical sense. They are, however, powerful and it requires an act of will to modify or suppress them. But the sorts of things we label repetitive movements are largely not exclusive to autistic or even neurodivergent people. As my therapist noted, everyone uses them and they have the same calming or soothing effect for all people. Twisting hair, tapping fingers, chewing pens, rocking under stress and a host of other repetitive movements are common for every human being. It’s the frequency, intensity, exaggerated range, and sometimes uncommon nature of autistic repetitive movements that stand out. But when you recognize that our ‘resting’ physical and mental state and our ‘normal’ sensory experience of the world around us would likely be considered debilitating by many allistic people, the greater frequency and intensity of soothing movements makes perfect sense. We need more calming and soothing action simply to function.

So yes, I’m anxious, pretty much all the time. I just didn’t know that’s what I was supposed to call it.


Discovering I’m Autistic During the Rise of American Fascism

Posted: August 25th, 2017 | Author: | Filed under: Autism, Misc, Personal | No Comments »

In the past year and a half, my personal self-understanding has increasingly been framed and explained through the lens of my discovery that I am and have always been autistic. That personal journey has been juxtaposed against the national resurgence of fascism, active white supremacy, and neo-nazism respresented and fueled in the mainstream primarily by and through Trump, white evangelicals, and the GOP.  That deeply personal revelation and our ongoing national tragedy have been intertwined in my experience and perception almost from the outset.

You see, I know my history.

For some reason, many people don’t seem to be aware that the Nazis didn’t only target their Jewish citizens. A number may be aware that they also targeted homosexuals. Comparatively few seem to know about the “Law for the Prevention of Progeny with Hereditary Diseases” instituted in 1933. The law instituted mandatory sterilization for people with conditions considered inheritable. That included people with learning disabilities and mental illnesses. And the Nazi propaganda machine began actively targeting disabled people as a burden on society.

And that process of dehumanization culminated in “Operation T4” instituted in 1939. Operation T4 was the name given to the program of euthanizing disabled people. In the first two years, 70,000 people were exterminated, mostly using poison gas. That process of mass extermination was the precursor and test bed for their later “Final Solution”. By the war’s end, an estimated 275,000 disabled people had been killed.

But I really do know my history.

The state mandated eugenics movement originally took root and grew here in the United States. The first state level forced sterilization law was instituted in a state here in 1907. By 1931, 28 states had such laws. The Nazis modeled their law after the laws then in place here in the United States. Those laws resulted in the forced sterilization of over 64,000 people. The eugenics movement was at least partially discredited after the horrors of the Holocaust were revealed to the world. But forced sterilizations still continued in places in the US throughout much of the 20th century.

I knew my history. And I’ve always tried to stand with the marginalized and use whatever voice and attention is afforded me as a white male to help, or at least not hurt, groups with less privilege in our society. But the ongoing process of discovering that I’m autistic has also involved recognizing the way that very identity places me squarely in an often targeted group.

In the not too distant past, that would have been an interesting fact, but less directly relevant for me in my day to day life than for many other autistic people. I am older and well-established. I am white. And I am male. Individually, those all carry weight. Collectively, they are powerful indeed, much more so than an autistic identity I had long since learned to conceal to some degree and with some success from a hostile world.

But my autistic self-discovery has been juxtaposed at every step with the resurgence of hate and politically powerful authoritarianism in this country. Hate requires targets. Fascists and bullies love to target first those they perceive as weak or unable to fight back. As a result, the disabled are often among the first groups targeted. We witnessed ridicule of a disabled journalist first-hand from the candidate himself during the campaign. The GOP has been increasingly targeting the disabled for some time now. And those attacks have often been embedded in policy decisions in many spheres this year, even failed ones like the most recent attack on Medicaid by the GOP. Or rather, their failed attempt as of this writing. I’m not so naive as to believe they’ve given up.

And that reality has been a factor in a number of the choices I’ve made. While I haven’t actually told very many people in my personal life about my diagnosis, I’ve made no secret about it in my online life. I did not create a pseudonym and I’ve clearly published that fact in my various profiles. And I’ve created an online autistic footprint that cannot be retracted at this juncture. Work has an official coding system which is voluntary and kept in confidence, but used for aggregate reporting purposes. I updated that information. Those and similar actions place me front and center. If and when they come for disabled people in earnest and with targeted policy, I intend to be standing front and center. They will damn sure have to come through me if I have anything to say about it.

Or at least that’s my hope and intent. I have no illusions about my individual strength, power, or ability. I fade quickly in crowds. I’m confused and easily contained, at least in the immediate term, by direct confrontation. Hell, most days it’s a personal victory for me to overcome whatever resistance, anxiety, or fear makes it so hard for me to make a damn phone call. I’m not really a hero or defender, at least until or unless you threaten my children.

But I can write. Words are my tool and my soul. And I can place my name and my autistic identity in the public sphere. I can preemptively make myself a target who will be difficult to ignore when they do come for those with developmental disabilities. I don’t necessarily feel disabled much of the time, but that’s the appropriate socially constructed box for my identity. And the fascists don’t and won’t care how I feel.

I’m also not under any illusion that my actions will make a difference. I’m just one person. I’m just one voice. And while it helps immensely to be a white male in our society, it won’t magically amplify my voice or confer power I lack.

So why be public at all?

It’s something I can do. It will likely have little, if any, impact as our national descent continues. It’s not the only thing I can do. I can continue to write letters to Congressmen who will ignore them. I can donate where I think it might help. I can continue to vote. But I’ve lived an autistic life without the benefit of a descriptive label; I simply believed I was broken and deficient. Having discovered that I’m not alone, in a sense affirming that I’m really human, I want to stand with that group, whatever the cost.


Optimal Outcome for Whom?

Posted: August 12th, 2017 | Author: | Filed under: Autism, Personal | No Comments »

Autisticzebra recently published a post: We do not outgrow our autism. On the surface that would seem self-evident. Even though we still know relatively little about how the brain actually works, we do currently know that autistic brains are wired and function differently from typically developing brains in a number of significant ways. It’s too soon to say we actually understand what those differences mean, but they do exist. And there are likely other structural differences we have yet to discover. In many ways, neuroscience is still in its early childhood as a field of knowledge. The human brain is enormously and in some ways irreducibly complex. The whole in this case is not merely the sum of the parts.

Given that, it should be self-evident that an autistic person can’t outgrow autism. While the brain is very flexible and can reroute function, adapt to damage, and can learn to operate in different ways, the functional aspects that lead to autistic thinking seem to be pervasive, not localized or limited. One problem, of course, is that we have a bifurcated view of autism today. On the one hand, we recognize that it’s neurodevelopmental and tied to the development and structure of the brain. On the other hand, we define and diagnose autism primarily through externally observable behaviors. And behaviors can often be changed. While changing behaviors can and does alter the ways the brain routes and handles signals and can enlarge or shrink specific areas, some overarching aspects of the structure of the brain remain the same, at least when it comes to autistic wiring.

It’s in that context that studies are performed such as Ratings of Broader Autism Phenotype and Personality Traits in Optimal Outcomes from Autism Spectrum Disorder. I would argue that ever stating that such individuals have “lost their autism diagnosis” or even as the study states, “no longer meet diagnostic criteria for ASD“, is actually a misrepresentation of the DSM. The diagnostic criteria for ASD all explicitly state that diagnostic behaviors have manifested “currently or by history” and the DSM explicitly requires that the “symptoms” have been present from early childhood. The DSM does recognize on some level the neurodevelopmental nature and lifelong persistence of autism.

With that said, I understand what the researchers are referencing, even if I think there’s a problem in the way it’s phrased. It is certainly possible for at least some of us to alter our behavior to the extent that, to an external observer, we do not recognizably display the visible markers of autism. I know that’s true because I did it. The “optimal outcome” for autistic children represents my personal lived experience.

There are, of course, some differences. There were no diagnostic criteria for autism when I was born. To the limited extent autism was recognized at all, it was considered a very rare, debilitating type of childhood schizophrenia and those so diagnosed were typically institutionalized. Therefore, I never received any “therapy” specifically for autism. I never knew my experience of the world even had a label. I never knew anyone else like me. As a result, the things I did were largely self-directed. I combined a not insignificant, but also not awe-inspiring intellect with a particular interest and focus on people around me to develop my own compensations.

However, that sounds too dry, rational, and clinical while my reality was anything but. I experienced a world of massive unpredictability where people could and did threaten and harm me for reasons I didn’t understand. Fear was therefore a motivating energy. But beyond that fear, the primary driver behind everything I did was a deep understanding that on some basic level I wasn’t like other people. The things I did failed to elicit the sorts of responses I saw going back and forth between other people. And others also recognized I wasn’t like them and responded accordingly.

I felt broken.

I need to let that truth stand by itself. When I peel back the layers of hurt and pain, my deepest experience and understanding of my place in relation to the world was that something was fundamentally wrong with me. And I was driven to hide it. No matter what I did, I never felt any less broken myself, but I didn’t want that brokenness exposed to others. That’s what I’ve been digging toward in counseling, I think. Here’s the way I wrote it to try to articulate it with my therapist.

I didn’t start working on tone, inflection, expressions, body language, and all the rest out of any sort of conscious, logical decision-making process. Rather, I felt like there was something wrong with me and I needed to find a way to fix it. I felt broken. I felt, down to the core of my being but never actually thinking it in words, that the ways “normal” people reacted to me and treated me were justified and caused by my own brokenness. I’ve always believed and internalized that every failure was my fault.

As long as I can remember, other people have not reacted to me as if I were one of them. That’s what fueled the intensity with which I worked to learn how to respond like they did to each other. It’s hard to describe what it’s like to know, and have repeatedly confirmed, that in some way you’re not like any other person you ever encounter. You feel almost like Pinocchio, that you aren’t a real person.

By the time I entered high school, I had largely succeeded in my endeavor, according to some definition of success. I continued to make significant strides after that point, but looking back I would say everything else was more incremental improvement than major substantive change. Even my mother has said she thought I outgrew the issues and problems I had had in childhood by the time I became a teen.

I think what I did and what is described in the literature as “optimal outcome” is qualitatively different from what most autistic people mean by masking or camouflaging. Rather, what I did was and is pervasive. I never stop doing it, even in most respects when I’m alone, though the intensity obviously is greater around others. It’s almost, but not quite, automatic. It’s never completely unconscious, but it’s not usually fully conscious either. If you have to actually consciously think about how to react in a social situation, it’s hard, and I would say probably impossible, to do so in a way that doesn’t markedly stand out to others. You have to internalize all your strategies and coping mechanisms. You have to make the part of your brain enforcing them powerful enough to dictate behavior. You have to become the mask.

And, even after internalizing everything, you still aren’t actually like “typically developing” people. That’s one truth evident, at least to me, in the observations from the study I found and referenced above. Even to removed observers some distinct differences between typically developing (TD) and optimal outcome (OO) children were apparent. And that’s been the story of my whole life. I may not appear clinically autistic in most settings, but other people still never quite treat me the same way they treat everyone else. They may not even notice, or perhaps only feel that something is ‘off’, but it’s painfully apparent to me.

From the study, I’m not sure exactly what’s behind the increased extraversion among the OO group, but I remember going through that phase throughout my teenage and young adulthood years. My wife recently commented that when she met me and for the first years of our marriage I talked all the time about everything. And she’s right. She first knew me in the tail end of that period. I found a comment in my basic training class “yearbook” where a fellow trainee had commented that I “sure talked a lot”. At some level, perhaps, it’s easier to manage the flow of the conversation when you’re speaking, though also from the same study, the OO children still had a hard time keeping the conversation focused. And in addition to getting sidetracked, OO people still “info dump” to some degree.

However, I found the “less reserved, shy, and inhibited” markers for “extraversion” in the study the most telling. Because it’s not simply that I talked a lot. The nature of my “conversation” was also qualitatively different, though I didn’t recognize that fact at the time. If I felt at all comfortable, connected, or even striving to connect with people around me, I had few, if any, filters on my speech. I would share things about my history, experience, and feelings without the normal inhibition that most people feel. I don’t know that I can put my finger on why that was true, but it was. Perhaps I had devoted the part of my brain normally involved in that sort of inhibition almost totally to managing social interaction, both through active performance and by inhibiting behaviors that detracted from it. Perhaps I spoke more out of a need to make connections. Maybe it was both of those and more. But I can see I lacked normal inhibition.

And that wasn’t good at all. It’s not just that I was vulnerable to manipulation and abuse because I couldn’t read the intent of other people toward me, though that’s certainly true. I also gave them all the information they needed to use against me on a silver platter. I gave them facts, history, preferences, inclinations, experiences, and feelings without any real effort on their part. I was already vulnerable and I actively made myself even more vulnerable and exposed.

I can still be talkative and assertive in conversations and social interactions, though that skill has become somewhat less accessible to me over the years. But I began to develop very strong filters on the things I revealed. However, even those filters don’t seem to function the way they do for “typically developing” people. I had to internalize the fact that revealing things that can be turned against me is bad by internalizing that all topics that are later used against me in conflict, abuse, or manipulation must be inhibited. But that process applies to everyone around me, no matter how close they are or how I feel about them. Take a moment to think through the implications, and I believe the negative side of that process is self-evident. Over the long term, I’ve filtered more and more with those who know me and the intense filtering has made it increasingly difficult to form new connections.

The observable differences between OO and TD groups in the study on remaining calm in a tense situation and being relaxed and handling stress well (with the OO group being noticeably worse) also makes perfect sense to anyone who is autistic. No matter how open, agreeable, conscientious and stable I can make myself appear, I am always in danger of being overwhelmed, I’m not really relaxed at all, and stress is a constant challenge.

The broader results make sense as well. The OO group was less likely to make conversation just to be polite than the TD group. The OO group had more pragmatic language difficulties than the TD group. They were more likely to get sidetracked in a conversation, lose their original point, and talk too much about some topics. Unsurprisingly to me, the OO group was more animated and less likely to use a flat or monotone voice than the TD group. They are more animated because they’ve practiced and focused on it more and have internalized a flat or monotone voice as a negative behavior that must be suppressed and avoided. How do I know that? Again, I lived through making those changes.

The OO group appeared similar to the TD group on rigidity, though the OO group was more likely to keep doing things the way they were used to doing it even if they knew a better way existed. Again, that makes perfect sense to me. It already takes a ton of effort to appear relaxed and flexible when you’re anything but. Why change something that works and which you’ve already learned?

So how does this optimal outcome play out over a lifetime? I can’t tell that anyone has truly studied that question, but I know how it went for me. Initially, I was highly vulnerable and abused or had others take advantage of me multiple times over the course of a decade of life. I had limited ability to establish true lasting connections with others and even when I did I had very limited resources or methods to repair inevitable relational damage. And over time, everything became overwhelming. What specifically was overwhelming me? I have no idea. I’m still working on that question. But I know it became harder and harder just to get through every day. And I internalized that as failure and proof there was something wrong with me and was driven to try to hide my struggle. Obviously, that made things worse and didn’t help at all. Externally, from the perspective of an observer, I checked all the boxes we expect for a “successful” life, though those boxes are primarily related to work and the benefits that flow from a stable income.

But I mostly never felt it.

And there is one other key difference between the children in the study and myself. While a ton of negative forces, internal and external, may have pushed and driven me, ultimately I decided how to approach and change each aspect of my behavior. I wouldn’t say all the impetus was internal or even fully conscious, nor do I want to overstate my volition, but I did have considerable agency in the specific choices I made and the self-training I undertook. I can’t imagine what it would be like to have those choices and that training imposed on me externally, especially by the very people on whom I relied for basic survival. As chaotic as my childhood was, that strikes me as even worse.

In order to achieve the state described as an “optimal outcome”, a person has to internalize the belief that at some level their survival depends on hiding their differences and looking like typically developing people. A child is not likely to explicitly or consciously think in those terms, but that’s the level of focus and energy it takes for an autistic person to develop and maintain a near-typical face. For me, I internalized the sense that I was broken and that I had to at all costs hide my brokenness. Any “failure” on my part reinforced that sense and made it stronger. I internalized the failures and never even really felt the “successes”. And if people didn’t treat me well, it was on some level experienced as nothing more than I deserved.

My way is almost certainly not the only approach that can be internalized sufficiently to produce an “optimal outcome”, but I don’t see any healthy, positive approach that will produce the same result. If you are even somewhat okay with the human being you are at your deepest levels, you will never be able to disguise all your many differences from everyone around you almost all the time. And that’s what the “optimal outcome” requires. It’s not masking at will or when circumstances demand. It’s managing and monitoring every behavior and every interaction all the time and never, ever stopping. It’s taking every failure and building it into your internalized system to try to avoid repeating it. And all that has to happen mostly on a semi-conscious or subconscious level like the details of driving a car. If you have to think about it too much, you won’t be able to actually do it.

And the whole time, you will still be autistic.

And that’s the basis for my plaintive, tear-filled question:

Optimal outcome for whom?

 


I Am Not Alone

Posted: August 3rd, 2017 | Author: | Filed under: Autism, Personal | 2 Comments »

I created a storify of a twitter thread about a month ago shortly after I wrote it. Aria Sky (Mamautistic) gave me permission to include her tweets in the story since I think our side conversation expands and deepens the point I was making. The thread revolves around this thought from one of my personal journals condensed and expressed in a single sentence.

It’s hard to describe what it’s like to know and have repeatedly confirmed from a very young age that in some way you’re not like any other person you ever encounter. You almost feel like you aren’t a real person.

It’s never been a secret to anyone who has ever known me that my brain doesn’t work the same as most other people’s. It’s certainly been no secret to me. I’ve had tests of all sorts from a young age. Educators found me ‘interesting’ and wanted to understand me better. I had issues with speech and saw a speech therapist for a few months when I was four. I had early issues with inconsolable ‘tantrums’ (which would likely be labeled ‘meltdowns’ today) and saw a therapist for them, again at a young age. But most of the interest adults took in me revolved around my unusual intellectual capabilities. Looking back, I realize it wasn’t just because I tested well or had unusually advanced language capability. The way I learned, processed, and integrated information was different and adults tried all sorts of tests over the years to try to understand why. I didn’t really mind, though I knew what they were doing even when they tried to call it ‘games’ or something similar. I often enjoyed their different approaches to testing. I believe the results always confused them more than anything else. I may explore that aspect more in the future, but let’s say for now that I’m not surprised recent fMRI studies have shown considerably more symmetry in the density of connections in both brain hemispheres of autistic participants than in “typically developing” participants (who tend to have more densely concentrated right brain connections). I’ve also mentioned that people at work have tried to figure out how my brain worked differently for decades. I’ve worked with highly intelligent, technically proficient, very capable people over the years. And even so, I’ve done things again and again that they could not.

Despite all that autism was never on anyone’s radar, probably because of my age and the fact that I was well into adulthood before any real understanding of autism even began to develop, not that we still have much actual understanding of how autistic minds differ. Moreover, despite all that it somehow never occurred to me that my difficulty understanding other people, learning and employing social nuance ‘on the fly’, interpreting intentions and attitudes toward me, and the social isolation, pain, and fear those difficulties instilled were connected to the different way my brain functioned. Specifically, it somehow failed to occur to me that everyone else was perceiving and reacting to social information in a completely different way than I was. I assumed their internal experience was similar to mine. I just thought they were better at handling it. I felt broken or damaged.

I’ve always felt alone in a way that’s difficult to describe to anyone who hasn’t also experienced it.

And that’s perhaps the single most personally vital bit of knowledge I gained when I learned I was autistic. I am not alone. I don’t know that I can describe how that feels or what it means to discover that truth when you are fifty-one years old. I had mostly given up and was simply surviving and pushing through each day by force of will for the sake of the people I loved who depended on me. My twitter thread tried to express at least some of what that has meant to me this past year.

Nor am I the only one who has experienced that deep sense of isolation. The Autistic Zebra wrote about it here. Alex Haagaard published What it means to finally ‘fit’. Their article focused on why identity labels can be so deeply important to some people. It contained this, to me, deeply relevant statement.

You do not know what it means to grow up feeling utterly alone, worthless and unsafe. And so you do not know what it means, after years of feeling like that, to find a space where you do fit.

That’s precisely what it meant to me to discover I was autistic. It doesn’t really matter to me that I’m not personally, directly connected to other autistic people the same way I am with my family or with coworkers or with people in my other social contexts. The ‘autistic‘ label is important to me because it defines a space filled with people who are like me in ways that aren’t true anywhere else. That doesn’t mean I need to somehow surround myself with other autistic people in my day to day life. I’m pretty tough and I’ve handled living in spaces where I don’t completely fit my whole life. Nor do I want to somehow escape non-autistic (or allistic) people. In fact, a number of them, starting with my wife and partner for the past 27 years, are the most important people in the world to me.

But I now have a space where I can ask if anyone else has experienced something or if it’s just me, a question all human beings ask at one point or another, and get an answer different from the one I’ve heard all my life. Until now, the implicit or explicit answer I’ve always received is that it’s just me. Nobody else really experienced the same thing. When I ask other autistic people, though, I tend to receive a chorus of “Me too!” responses. There’s finally that space where I do fit. And that’s the feeling I tried to capture in my thread below.


A focused interest in people?

Posted: July 2nd, 2017 | Author: | Filed under: Autism | No Comments »

My therapist made an observation last week that I’ve been rolling around in my mind trying to decide what I think about it. I was discussing a question I was asked in another counseling session, “What would it be like for me to let myself just react naturally?” (That’s paraphrased, but it was something similar.) It arose when I was trying to describe just how much I’m constantly processing and monitoring and evaluating every single social interaction, everything said, every expression and other non-verbals, tone, inflection, and every other aspect. I’m trying to understand the other person correctly as I’m also trying to manage everything about my own affect to try to communicate what I actually want to say. Part of that is conscious, but a lot of it is deeply ingrained and semi-automatic. Most of all, it never stops. A portion of my mind is always reviewing past interactions, preparing for future ones, or trying to manage one in which I’m currently engaged. Sometimes, it’s doing all three things at once. In that context, I guess it made sense for someone to ask, why don’t you just react?

And so I tried to explain that I have absolutely no idea what that would even mean, much less how I could I do it. I began training my voice (using tapes I had my mother get for me), practicing expressions in the mirror, and consciously working on body language when I was 8, 9, and 10 years old. I became good enough at it that I was able to more or less interact with others on a level that came close enough to their expectations that they didn’t perceive me as too different and reacted much less negatively. I have continued to work on that process my entire life. I’m 52 years old. I haven’t reacted spontaneously and without thought in a social context since I was 7 years old. I don’t know that I could shut off that part of my brain even if I wanted to do so. And I have even less idea what it would mean if I somehow did.

But I objected to the interpretation that some people make that my reactions and interactions are somehow inauthentic or fake as a result. People take the fact that I consciously or semi-consciously manage social interactions and that I rehearse them in my head as though I am not reacting naturally. I began to point out to my therapist that absolutely everyone wears different “faces” in different contexts. It’s a normal part of being human. And I described how I see it everywhere all the time. I watch expressions and body language. I listen to variations in tone of voice. I can see even small changes when I’m not involved in the interaction and can devote myself to analyzing instead of participating. I’ll see myriad subtle shifts in body language, expression, and affect as a person moves from one context into a different one. Sometimes things will shift when someone new enters an ongoing social interaction. People shift and modify the face they display all the time. They just do it without thinking, so they assume they are being “natural”.

And I described again some of the ways I practiced and learned how to do something similar. It’s never entirely automatic for me, no matter how much I practice. I can easily get thrown off by the unexpected. I’m still learning new unwritten and unspoken social rules every year. And I often do more suggestion and leading in my performance, allowing others to fill in the gaps (a technique I learning from acting) because I have to devote much of my mind to the actual communication itself. (It doesn’t help if I get my expression and body language right, understand their nonverbal attitude and realize I have no clue what they actually just said.) So my faces are typically incomplete, but often just good enough for the given context and setting. While they are never natural and automatic, they are no less authentic than the faces everyone else uses without thinking. In every instance, my faces are a part or aspect of who I am. I am trying to communicate in ways that will be received as I intended them to be heard rather than misunderstood. I am being no more fake than someone trying to speak a second language that doesn’t come easily to them.

My therapist’s reaction was unexpected. Of course, she acknowledged and restated the truth in everything I had described. I am trying to do pretty much exactly what everyone else does automatically and without thought. And the fact that I have to think about it or practice it doesn’t make what I’m doing any less authentic or real. But then she paused for a moment. I’ll have to paraphrase what she said, but I think the following is more or less accurate.

“It’s not uncommon for autistic people to develop a focused interest in something. And when that happens, they tend to learn everything they can about it, in far more depth and more comprehensively than most people do about any subject. And while everything you say about communication and social interaction is true, the thing that stands out to me is that you saw and understood enough about it to begin practicing on your own when you were as young as eight years old. I think instead of trains, which is one of the stereotypical autistic interests, you were interested in people. You’ve described observations about human interaction that many adults never consciously make. You must really study people and you’ve apparently done so your whole life.”

It was one of those moments where everything goes out of focus, shifts, and comes back into focus in a different configuration. Even with everything I had read about autism and “special interests” that possibility had simply never occurred to me. But once it was said, it made perfect sense. And yes, I do study people. I can sit and watch people in public settings for hours without tiring. I closely watch the people I care about and try to understand their unique particular reactions, expressions, and ways of expressing things. I always have mixed results. I remain utterly inept at reading people’s attitudes and intent toward me, and am forced to rely purely on their words and actions. And I still struggle immensely applying even what I do know in real time interactions.

I’ve expressed in other posts that I appreciate my ability to at least approximate expected social responses most of the time. I’m sure the effort exacts a toll on me, but it’s not one I regret. I need that ability in a professional context. I’ve been desperately poor in the past. I appreciate the stability and structure a consistent, reliable income brings. But it also matters to me socially. I like to generally get along with people and have our social life in the community go smoothly. And when it comes to closer relationships, I have so very few people. I desperately want to communicate to them in ways they understand and which accurately conveys how deeply important they are to me. That’s worth however much energy and effort it takes. And I still fear I fail more than I succeed.

Obviously, autistic people who develop passionate and focused interests can and do develop more than one. And those can also change over time. I’ve described elsewhere some of my interests. But I never thought of ‘people’ as one. Yet when I heard my therapist’s words, they rang true. Another person’s perspective can sometimes be revealing. The other can see things about you that are hidden to you. I think this may very well be my oldest, deepest, most focused, and most passionate interest. People do fascinate and intrigue me. And there’s no end to their depth and variation.


Theory of Mind

Posted: June 25th, 2017 | Author: | Filed under: Autism | No Comments »

Actually, the title of this post is probably a bit of misnomer. I’m not going to discuss theory of mind itself. If you want to dive into such a discussion, I highly recommend this post. But there is an aspect related to the theory of mind discussions that has been niggling at the back of my mind since I discovered them after being diagnosed with ASD last year.

I do lose track of which things I know that my partner also knows.

It shows up most in that, my closest relationship, but I can see traces of it in other settings. As with all things autistic (and I do believe this is related to autism), I’ve learned to cover well. Nevertheless, there have been countless times my wife has told me she didn’t know something I thought she knew. In some cases, I even feel like I remember telling her, but she assures me I never did.

At first, the theory of mind discussions seemed related. But they really aren’t. It’s not as though I’m not aware of the boundary between my mind and the things I know and other minds. If anything, I’m acutely aware of that boundary at all times. Sometimes, it feels more like a chasm than a simple boundary. And yet, I still end up unsure or outright wrong about which information in my mind I’ve actually shared with others. I’ve been searching for an explanation.

This past month, as I’ve had to deal with medical information in a hospital setting with many different people on top of family communication I think the answer finally crystallized in my mind. I’ve noticed the intensity with which I mentally rehearse almost everything I want to communicate, whether it’s comparatively minor or critically important to me. I rehearse everything. I rehearse what I imagine are likely responses to what I will say. I try out different ways of phrasing things and try to understand how each approach will likely be heard. There’s a part of my mind that never, ever stops rehearsing ways to share information. It’s relentless and it’s so much a part of the way my mind works that I don’t even think about it as a process. Obviously, this goes way beyond “scripts” and I think it has a lot to do with my “success” at masking my autistic traits fairly well for much of my adult life.

But I rehearse communication so rigorously that it sometimes feels like I’ve shared something when I actually haven’t. The process of mental rehearsal also forms memories. If the process didn’t it would be useless. But sometimes those memories are hard to distinguish from memories of actually speaking. From time to time, my mind gets confused and I end up believing I have actually spoken words I never said. It’s not that I’m confused about where my mind ends and yours begins. Rather, I incorrectly remember a mentally rehearsed conversation as one that actually occurred.

So I’m left wondering: Does that happen to other people too or is it just me?


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.


Chance Encounters

Posted: March 21st, 2017 | Author: | Filed under: Autism, Personal | Tags: | No Comments »

This weekend my father-in-law was in the hospital again. His memory care facility thought he might have had a stroke. It turned out to be something else, but they kept him to observe his cardiac telemetry and have it reviewed by a cardiologist. Decades of work have trained my system so I tend to wake early and function best in the morning, so I tend to take that part of the load for my wife. Since that’s also when doctors often make their rounds, I tend to handle a lot of the interaction with them as well. While being ‘on’ and interacting with strangers is draining for me, hospitals are a setting where hyperfocus and alexithymia function as a clear advantage. I also never get ‘bored’ the way people describe it, so I’m able to take the long stretches of tedium mixed with bursts of activity in stride. It can be a challenge for me to make sure I ask all the questions that need to be asked and remember all the verbal information that’s shared, but somehow that’s always been easier for me when it’s about someone else than it is when it’s for myself.

Draining as the hospital experiences are, I’m often better equipped to handle lengthy periods in that setting than my wife. I have less emotional involvement when it’s her father, but even when it’s my father in the hospital, I’m able to set that aside and deal with the emotions later. I can even do that to a degree when I need to focus and process when it’s been my wife in the hospital. I never had a name for it until I was diagnosed and discovered a high percentage of autistic people are also alexithymic. I think I can see now why people are always asking how you feel in those situations. For most people, the emotions overwhelm everything else. It’s not that I don’t have emotions and often quite a swirling mess of them. In fact, if I allowed my emotions free reign, they would likely overwhelm me too. It’s more that it takes real effort for me to perceive those emotions as anything more than an undifferentiated tangle of energy. And I can turn that focused effort toward something more productive in the moment and simply use the energy to keep myself moving forward. Identify what needs to be done. Do it. Identify what needs to be done next. Do it. Rinse and repeat until the crisis is over. And when no action is required, wait. I noticed this time in particular, though, that my redirected focus apparently does alter my affect and makes those who know me well, like my wife, uncomfortable.

On the last day, my father-in-law had a student nurse working with him as well. And she’s the one who helped take him downstairs with me when he was discharged. Along the way, she asked what I did and I told her I was a programmer. (Although that’s not, strictly speaking, what I do on a daily basis anymore, it will always remain my primary occupational identity. And it’s a lot easier to explain to someone who isn’t technical.) She asked what I did, which is a massive question, especially with my 30+ year history with computers and technology, so I kept it general. She then told me that her 12 year old son really enjoyed the snippets of access to programming he had in school, but there wasn’t a full class focused on it at his age and she wanted to know if I had any recommendations.

Of course, as anyone knows, that’s a huge question and with no idea where her son’s interests were focused, a tough one to answer. Then she added something to the effect that her son was on the autism spectrum, but he was “high functioning”. In the moment, I simply responded, “I am too. I was just diagnosed last year.”

She didn’t skip a beat and went on to explain that programming seemed to really interest him, but she didn’t even know where to look for resources. None of my kids have ever been interested in technology and computers the way I am, so I’ve never had to think in terms of what would help a preteen and young teenager. Nor did I have time to ask many questions. I mentally ran through modern programming options and decided that an autistic kid who had shown enough interest in the topic that his mother was asking strangers for advice would likely want to dive into a real language. At the same time, it would need to be one that was accessible to a beginner and for which there were a lot of tutorials and resources online in multiple formats since I had no idea how he best absorbed information. So I recommended that she search for python tutorials. It’s a language with which you can do just about anything you want and it runs on pretty much any modern platform. Moreover, there are free tutorials and classes available online in written text, interactive formats, and videos. (And probably other formats as well.) It should be possible to find something that fits his learning style.

And then it was time to take my father-in-law back to his facility. Will that brief encounter end up helping the woman and her son, even a little bit? I have no idea. If her son does have an interest in programming, python is a pretty accessible language. Will disclosing that I was autistic  to her help? I hope it does, but again I have no way to know. There’s very little representation of autistic adults out there today. And 51 year old adults, autistic or allistic, are rarely much like they were when they were 12. Experience and age do make a significant difference. I know parents today hear a lot of frightening stuff about autism. Given that, I hope it helps the mother that the random person she approached for advice was also autistic.

I’m not sure if I’m having more chance encounters with autistic children or parents of autistic children since I was diagnosed or if I’m just noticing each encounter now. Were these encounters off my radar before and therefore didn’t stick in my memory? But now each such encounter stands out as significant to me? Or are people disclosing to me now more than they did before? I truly have no idea, but it’s not like I have an autistic sticker on my forehead.  For whatever reason, though, I’m certainly aware of more encounters now.


Fighting First Impressions

Posted: March 18th, 2017 | Author: | Filed under: Autism | Tags: , , , | No Comments »

I ran across an academic paper that reviewed research into “thin slice judgments” of autistic people by neurotypical people. (It can also be downloaded and saved as a PDF for those who might prefer to do so.) For those who might not have encountered the term before, thin slice judgments are the ones we make very quickly and with minimal exposure when encountering another person. They represent our ‘gut feeling’ about someone or what we often describe as our ‘first impression’. It’s often an unconscious reaction rather than anything we consider. And the results of these studies were pretty telling. Neurotypical thin slice judgments of autistic people tend to be negative. The studies were constructed differently, but all revealed the same underlying bias.

Specifically, we are viewed as people our allistic peers are less likely to speak to, sit near, or spend time with. We are perceived as more awkward, more unapproachable, less dominant, and less likable. It’s important to recognize that the nature of thin slice judgments is that they are based on extremely minimal input. They are, however, powerful. It’s those very early judgments that determine how likely we are to interact with someone at all or for more than a few seconds. The first study even included different modalities and the only one that didn’t show a difference was when the participants were reading a written transcript.

I very much doubt that’s exactly a surprise to any of my autistic peers. We know we are treated differently. We’re familiar with all the social barriers we face. And for those of us who were late diagnosed, that was true long before we had any idea we were autistic. However, this study illustrates that it’s not as simple as autistic “social deficits” on our part. Thin slice judgments are not based on any actual social interaction. These are the unconscious judgments before any meaningful interaction or even any interaction whatsoever occurs.

As a result, autistic people are constantly fighting an uphill battle against those negative first impressions. Since some of those judgments are whether or not someone will even sit with us or speak to us, it’s an ongoing struggle just to engage with our allistic peers. We’re fighting against their thin slice judgments.

For me, that helps explain why all my work learning social rules, practicing verbal tone and inflection, rehearsing facial expressions, and studying acting has always been insufficient. Thin slice judgments come into play before any of those can be brought to bear. A lot of the time I never even get the chance to employ the varied social skills I’ve developed. It’s not unusual for me to be in a crowded social setting and have nobody speak to me at all. Sometimes I’ll make an effort, with varying degrees of success, to initiate conversations with people. But I can also go a whole evening with nobody in a crowd of strangers or almost strangers ever interacting with me.

I found this paper personally helpful. It’s good to know that it’s not just my imagination. And it’s good to know that it’s based on their judgments rather than anything I’ve actually done or said. But it’s also somewhat discouraging. I’m already at a disadvantage when actively interacting and engaging with the larger neurotypical world. I also have to climb out of a hole dug by their negative first impressions before I can even get to the starting line. And there’s no learned skill or strategy that can alter thin slice judgments. Extended interaction always gives you the chance to overcome and reverse them. But the nature of thin slice judgments is that they have a lot to do with whom people choose to interact in the first place.

I find this search of research helpful. Your mileage may vary, of course.