I’ve Never Been a Social Mimic. I Developed Emotional Intelligence Instead.

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I’ve been meaning to post this for days, but it was much more difficult than anticipated to turn into a blog post from the original journal entry. I essentially ended up rewriting the entire thing, and doubling the length.

One other editorial note: I don’t mean to demonize my family in any way. I’m simply describing things the way they happened. Society as a whole, and my family in particular, had much different understandings of diversity and disability, along with many other things, when I was growing up than we do today.

When reading the stories of other (mostly adult-diagnosed) autistic women in the last several years, I keep hearing about how their childhoods were spent trying to learn how to mimic NT social behaviour in order to ‘fit in’, and how important this was to them. For some, it was clearly a survival strategy. For others, there did seem to be some genuine desire to have social connections one’s own age, and an intolerance by those around them towards those who were different, or ‘other’, which necessitated excessive conformity.

I have always had a hard time relating to these narratives, as my experiences were very different. I never had that interest in socialization, much less the ability to distort myself into something that I wasn’t (for any significant length of time). (I suppose I should mention, however, that I did have friends growing up. They usually considered me strange, though, often in a bad way. As I grew older, that changed, and more often, it became a good sort of strange.) As a younger child, the purpose of typical NT social contortions completely escaped me. As a teen, when the pressure to conform was at its most intense, (from my parents, not my peers), and I had no choice but to learn to ‘play the game’ (never sufficiently enough, by the way), I remember feeling that so much of this behaviour contradicted my very sense of self, and as such, felt poisonous and destructive.

For much of my childhood, I actively avoided learning many “normal” socialization and self-help skills as much as possible, because it all felt so overwhelming, and so self-annihilating. I only learned many of these skills “kicking and screaming”, as the phrase goes. People were so inimical to me, that I spent as much time ignoring them as I could. Of course, as I approached adolescence, that only made things worse, as social expectations on me increased. Because I was so overwhelmed, and my environment was so intolerant of my differences, I spent a lot of time and energy trying to avoid as much consciousness and awareness of the Neurotypical world as I could!

As I’ve mentioned, I only started to try to learn many NT social interaction skills as a teen, after two years of my family’s intense, relentless, demands that I do so, without any respite or refuge. My reasoning was, that if I gave in a little, gave them something, they would let up, and I could compartmentalise it, so that it didn’t compromise me.  Unfortunately, it didn’t work that way. Giving in a little meant giving in more, and then more, until I almost lost myself (repeatedly). Thankfully, there was always a part of me that would rebel, and show me what was real; a part that would show me who I really was. The problem was, my family, and society in general, still made me feel defective and pathological. They made me feel pathological for all of my struggles, and my attempts to reconcile what was expected of me with what I was actually capable of. For not being able to become a carbon copy of them. For not being able to become “normal”. And that’s not even including my struggles with depression, and with trauma reactions! They thoroughly believed that I shouldn’t have any of those difficulties. My family believed (and were quite insistent) that I had no reason to be either traumatized or depressed. Of course, society was also culpable, in that it customarily dismissed and stigmatized trauma and mood disorders, (even more so than it does now). Or, as I like to call it, society subscribed to a philosophy of “stoicism run amok”, refusing to admit that being human comes with a susceptibility to certain frailties.

There was a lot of trauma in my life. My parents made me feel ashamed, not only for being different, but for any and all coping strategies I had. For every way I tried to deal with the world, and tried to cope with my differences. Never mind the effects of being treated as if I were defective. Striking out at the world was harshly condemned, but withdrawal was also denigrated and treated as shameful, so I couldn’t win either way. Not only everything I did, but everything I was, was seen as defective and pathological. Needless to say, coupled with my natural autistic indifference to people, this trauma magnified my reluctance to engage with people, or even pay attention to the world in general, any more than was absolutely necessary for survival. In fact, these traumas caused my indifference to people to develop into an outright aversion to people, and to many of the usual interactions and necessary functional skills considered “typical” for age-appropriate independent existence.

 I know there will be some people who will try to discredit my validity as an autistic person, because I’ve admitted trauma played a big part in my aversion to people for a very long time. This is an all-too-common tactic of those members of society who want to deny the truth spoken by autistic voices, and autistic rights to self-determination. To them, only a tiny portion of the autistic population is “autistic enough” (whatever that means), regardless of diagnostic status.

So, I want to be clear: both autism and trauma were responsible for my aversion to, and lack of interest in, people, well into adulthood. It’s not an either/or situation. Trauma and autism can co-exist, and often do thanks to the ableist society we live in!

In fact, now that understanding of autism has evolved past the point where autistics were seen as being incapable of having emotion, (except for a few portions of the population who are stuck in an archaic view of autism, and like to still deny us our personhood, and our humanity) it is common knowledge in professional circles that depression and anxiety are highly comorbid conditions with autism. It has also long been realized that the disabled population in general is at a higher risk of being victims of abuse, in part because they are seen as ‘safe’ targets, due to the likelihood that they will either be unable to communicate its occurrence, or will not be believed if they can, and do communicate it. (Autistic people specifically, are even more vulnerable than the general disabled population for reasons related to autistic difficulties, and are therefore even more at risk.) It should come as no surprise then, that the number of autistics who have reported being traumatized by bullying, or intolerant behaviour, often by the people closest to them, is staggering. As such, trauma in the autistic population is rampant, possibly even endemic.

Ironically, out of my entire family, I seem to be currently the one with the fewest personal problems, the most peace of mind, and the most satisfaction with my life. (And yes, that took a boatload of work, and self-reflection. Several boatloads, actually.) In fact, as I look back on my life so far, I’ve been starting to wonder for a while now, if rather than social mimicking, I spent my energy on learning and developing emotional intelligence in order to make the relationships I did choose to have, as beneficial as possible. I seem to have spent most of the last few decades focusing on learning how to deal with all the stress and chaos in my life that has come from being a disabled person in an ableist, ignorant and intolerant society. My focus has been on how to get the supports I needed to have some semblance of the life that was demanded of me by society, developing the requisite people skills to achieve those supports, and how to make the complexities of navigating appropriate support work out.

Come to think of it, I suppose what I’ve learned is simply an extension of the skills I needed to survive my emotional struggles in high school (a.k.a. chronic, severe depression, and the above-mentioned trauma). In early adulthood I redoubled my focus on learning more about stress responses and trauma responses, and applying that knowledge. Coincidentally, this also meant learning about how people work (to the limits my autism enables), and how they communicate, in order to figure out how to get my needs across to what certainly felt like an alien species. A complicating factor was that most of the people I dealt with had difficulty comprehending (or refused to comprehend) why someone with my intelligence needed help with things they took for granted, yet I had a facility with the things they struggled with. Or, to quote an autistic, former friend of mine, “I swear sometimes that my brain is wired backwards”.

My complaint usually was “It wouldn’t be so bad if we didn’t look like the damned native inhabitants of this planet!” (We are, of course, native to this planet; it just feels like we aren’t, too frequently.) For many of the NTs I encountered in my early adulthood, it apparently just didn’t compute that an intelligent person could have difficulty with basic functioning or social interaction for reasons other than willfulness or pathological dependence.

Actually getting my divergent needs met was another skill I became quite proficient at, out of necessity. Assistance from my ANI friends, and the disability rights community in general also played a key role. And sometimes getting my needs met meant meeting the emotional, (or occasionally practical) needs of the people who were helping me, when such things were within my capabilities.

In the process, all this knowledge about how people work, (or don’t), meant I was developing more compassion, crucially, for myself, and also for other people.

Another thing I seem to have learned through all this advocacy, and the complexities of human relationships it involved, was how to improve, and refine, my ability to read facial expressions, and vocal emotions. I learned to perceive when people were expressing empathy, sympathy, compassion, frustration, etc. and to distinguish frustration from anger, as well as fear from anger. I also learned how to get people to recognize what I was feeling, even when I couldn’t manage the NT typical expression of it.

It’s amazing what exposure to, and involvement in, relationships with people who are willing to fight with, and for, me, and my right to be included in society in a way that works for me has done for me. It radically changed my ability to value and accept myself, be compassionate with myself (as mentioned), as well as my willingness to interact with this foreign world that is fundamentally set up in opposition to the way my brain is wired. More recently, I’ve discovered that, stealth-mode like, comprehension of the very purpose of other people, and why NTs find a benefit in superficial social relationships has crept up on me. Even cooler, I’ve realized that for a long time now, I’ve been able to comprehend, and engage in, an inordinate amount of the bidirectional benefits of deep relationships with the right people. (I suppose that’s what happens when I only choose relationships that are going to benefit my life, not ones with random people because I’ve been told I’m “supposed to”.)

One last thing of importance: Years ago, after a fair amount of repeated comments by people who were important to me, about how they thought I didn’t find the relationship with them important, because I wasn’t displaying the verbal or nonverbal behaviour they expected to see, I decided it was important to devote energy towards finding ways to let these people know that they were important to me. I knew I wasn’t capable of many of the usual nonverbal NT behaviours, and I was unwilling to use verbal or nonverbal behaviours which felt empty to me, or done only for social convention (e.g., “social lies”), so it became necessary to figure out ways that were congruent with who I was, and what my abilities were in verbal and nonverbal behaviour, that would demonstrate the important emotions. Especially since, as a rule, I didn’t “stick” in relationships (with rare exceptions). After some experimentations, I succeeded. Even when my behaviour or words otherwise said “I don’t need you”, “I don’t need relationships”, or even “I don’t want relationships”, or “I don’t want to have to deal with other people at all”, I was able to signal to specific people that they were valued, wanted, and beneficial to my life.

Of course, these signals were (and are) often different for each person, though I learned that some things generalize. Over the years it has become habitual, once someone crosses my (admittedly high) threshold of “worth the effort”, to be able to find those things that lets that person know when they are important to me, even when all other appearances suggest otherwise.  The curious, and amusing (to me at least) thing is, that this has resulted, over the years, in many NTs remarking that I make more effort in my relationship with them than their NT relationships do! After much reflection on this issue, I’ve hypothesized that because I can’t do a lot of the ‘typical’ bigger things, I probably just pay attention to different things, things that perhaps NTs overlook.

A Note on My Persistence Pursing a Disability Diagnosis

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When I talk about my drive to get a diagnosis, and my refusal to take “no” for an answer in the process, I’m not saying that I knew what the answers were, and wouldn’t take any other alternative as “right” or “acceptable”. I didn’t, by any stretch of the imagination. I had done a bunch of research, and read a bunch of things about different disabilities, and, of course, found ANI long before I got my official autism dx, but even though I strongly suspected I was autistic, and my autistic friends all thought I was too, I didn’t know, until I was officially diagnosed. The communication dx was easier. It was pretty obvious that I had difficulty with the whole concept, as much as I had some skills, and even talents, in some areas. And it only took the one appointment with the SLP (after my family doctor at the time freaked when I decided to give up on speech as a mode of communication – in any situation I could get away with – and referred me when I refused medications for anxiety.) before she agreed there were organic, developmental issues. The auditory processing dx though, was entirely her idea. I didn’t even know there was such a thing until she mentioned it!

  What I argued with, and what I refused to agree to, or allow to stand, was that all of my difficulties with language processing, with communication, and with socialization, were the result purely of anxiety. I knew, down to my bones, hell, down to my soul, that there were fundamental things that other people understood, that other people took for granted, and learned automatically, that were completely beyond my comprehension. I also knew there were other things I could understand, but were beyond my ability to produce, no matter how hard I tried, or what I knew, or what I learned. I knew that I had sensory experiences that other people didn’t, and for that matter, there were things that I understood and perceived, that other people didn’t. And no one would believe me. I knew that there were many, many things that prevented me from being able to function in the world the way I was “supposed to”, and that made ordinary existence overwhelming, and even unbearable. And I knew that none of these things had anything to do with my “attitude”, or my “refusal to try”. I knew that my intelligence in many areas had nothing to do with my inability in these other areas (even though practically everybody else I encountered refused to consider the possibility).

I was reassured when, after the neuropsychologist told me she could find “nothing wrong”, one of my ANI friends, who was more noticeably affected than me, told me that he had scored similarly to me on neuropsychological batteries, because during them, the tasks were required in isolation. In contrast, in the real world, there were many competing demands for his attention, which messed up his ability to function in his daily life. That reassurance gave me the courage, the faith, and the continued motivation to continue to pursue a real answer (after a bit of a setback). I’ll never forget how relieved I was, when it became blatantly obvious halfway through the subsequent learning disabilities assessment, that there was something clearly “wrong”, something different, about the way I learned! That it was so blatantly obvious to someone who knew what they were looking at, after so many failed attempts, and after so many years of so many people (including some professionals who claimed they knew what they were doing, when they clearly did not) telling me that I was exaggerating, or entirely making it up, was, as I said, a huge relief! It was also incredibly validating! The learning disabilities specialist hadn’t even finished administering the testing, much less scored anything, and yet she was absolutely convinced there was a serious problem! And then, of course, shortly after that, the autism specialist who did ultimately provide my diagnosis, agreed to provide the autism assessment, since most of the work had already been done for her, and “the rest is history”’.

But, just for the record, if someone, anyone (professional), had told me “It’s not autism, but it’s this other disability that affects your comprehension of the world, and ability to function at a basic level”, and they were able to explain to me how it accounted for my difficulties adequately, then I would’ve been totally fine with that. Maybe a little surprised, but fine with it. It was the fact that besides the SLP and the Audiologist, nobody took me seriously when I tried to explain my difficulties, that caused me to keep pushing. Since I was unable to function in the way that was demanded of me, as a nondisabled person, and the communication disorder(s) only explained part of the puzzle, I kept going until someone could give me a reasonable answer. It just so happened that I did know what I was talking about when I assigned my difficulties to autism, and I did wind up with that diagnosis.

Unexpected Wisdom From Years of Chaos and Stress.

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A couple of years ago, as my life got somewhat more complicated after several years of calm and quiet, I found myself automatically falling back on strategies that I had learned during the many years I was at university, when everything was so incredibly difficult, and hard to manage, both in basic functioning, and in terms of mental health issues. At some point during this recent process, I realized that as hard as those years were, and as much as so much of it sucked royally, somewhere in the process, I also learned many (more) stress management skills, many people skills, and how to use all those skills under stress. Then I made a list of what those new capabilities were, so I could see what they were, all in one place, and refer back to it as needed. Then I segued into a list of other things that I’ve learned that are a combination of stress management, and disability management skills. As it turns out, this is only a partial list, as I continue to identify new competencies periodically. Some of which get written down, and some don’t.

Creating this list has also helped me see that all those years of chaos actually had a purpose to them, beyond just creating trouble. Since I’ve gotten some really good feedback on it when I’ve shared it with people in my life, I’ve decided it might also make a good new blog topic. Hopefully it will resonate with some people, and perhaps prompt consideration of skills and knowledge readers have gained in their own lives that they may not have considered before.

Benefits from so many years of chaos:

  • Gave up on perfectionism
  • Learned the concept “good enough”
  • Learned the concept of “the best I can do” being good enough, no matter what NT standards might be
  • Learned how to change my expectations depending on my stress level and circumstances
  • Learned more coping skills
  • Learned how to use those coping skills under stress.
  • Learned how to accept someone worrying about me.
  • Learned how to appreciate it when someone was concerned about me
  • Got lots of practice in asking for help.
  • Learned what kind of help I needed, and when.
  • Learned how to use a support system.
  • Learned how to communicate what worked/helped with my support system
  • Learned how to communicate my emotional states and distress in a fashion NTs could/can understand.
  • Learned to practice self-care and what that meant, specifically. Both in small and larger ways.

Mixed stress and disability related advantages:

  • Learned self-compassion
  • Learned to appreciate small victories
  • Learned all sorts of people skills in the process
  • Learned which people skills were useful for me, and which didn’t fit
  • Learned which societal expectations work for me, and which ones don’t. (and more recently), how that sometimes changes.
  • Learned to make contingency plans to minimize potential problems. Often multiple plans
  • Learned how to break challenges down into manageable bits to keep from getting overwhelmed by them.

Learning to Negotiate the Support Services I Need to Function in the Neurotypical World.

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© July 2021.

I’ve been reflecting on how both my people skills and my communication skills were much more limited in the early years of my adulthood, when I was figuring out how to make independence work for me despite my (unrecognized) disability issues. How I’ve gotten so much better about (well, asking for help in the first place, but that’s another subject) negotiating with people about how to get help from them, without seeming overwhelming or demanding or unappreciative, etc. These intervening years of working it all out has created in me the ability to negotiate better, to recognize that other people may have needs or wants that conflict, and that that doesn’t necessarily mean they don’t want to help. I’ve learned about expressing appreciation, about acknowledging other people’s needs and feelings, while still standing up for my own needs.

I’ve learned about not giving in when people tell me I’m asking for “too much”, when all I’m asking for are my basic rights. I’ve learned about finding a different way to make things work, about problem solving, about compromise, and how that doesn’t necessarily mean I’m not getting my needs met, or that people are neglecting or abandoning me. Nor does it mean that they are being dismissive or oppressive, the way so many people were when I was growing up. I suppose you could say I’ve learned about assertiveness, somewhere in the process of learning about self-advocacy, while at the same time respecting other people’s needs and rights. I’ve learned about expressing my needs, even when the person I’m talking to may not be able to meet them. I’ve learned that someone being unable to help doesn’t always mean they don’t want to. I’ve learned that sometimes life gets in the way, or that someone else’s limitations (temporary or otherwise) can interfere with their emotional desire to provide assistance. I’ve also learned to trust, I suppose. In a very basic way, as well as in more nuanced ways. I’ve learned that just because someone is unable to provide the assistance I need, at any particular time, doesn’t mean that I don’t deserve, or am not worthy of that help. Or that I’m not worthy of being helped in general. Just because someone isn’t able to provide the help I need does not mean that I’m not worthy of compassion, or any of the other “gentler” emotions. I’ve learned that my feelings and my needs matter. They matter both to me (which I’ve always known), and to other important people in my life (and even some other people).

I’ve also learned about what my needs are, and how they fluctuate. I’ve learned to define what help I need when, and how. I’ve learned when to push the boundaries of my abilities, and when not to. I’ve learned how to tell when the degree of assistance I need changes. Sometimes I’ve needed a lot of help just with basic functioning, other times, I need very little support. On the low needs end of the scale, for example, sometimes just having someone available to “step in” if/when needed, can be all I need to be able to risk speaking to strangers. Or at least strangers I expect might be more tolerant of differences. It also helps that society is becoming more tolerant of communicative differences, so there are less obstacles upfront (even if people in some positions are more clueless than they used to be). Alternatively, I’ve learned that sometimes just having another person present can provide enough of a “prompt” that I’m able to overcome my inertia on a task, communicative or otherwise. The presence of another person can also help in terms of assisting with focusing when I get disorganized, and lose track of what I’m supposed to be doing next. Sometimes this involves a short verbal prompt, and sometimes just the other person’s presence has been helpful. Many of these things I only learned through trial and error. Sometimes, I needed the assistance of someone experienced and/or trained in disability accommodations, or related problem solving, and sometimes I was able to figure things out for myself. Sometimes it was suggestions from others “like me”, who were having their own trial and error discoveries about how to make life simpler, or easier for themselves, that they passed on, that were the most helpful. Sometimes it was a combination of all three options.

In the beginning, I had very little knowledge about what I needed, or even what was possible, coming from the non-disabled world such as I did. No one had ever said to me “what about trying things this way?” Or, “Okay, that’s not going to work for you, what about this?” They only told me “You have to do things the same way the rest of us do, and you’re defective for not.” Often times they didn’t even acknowledge, much less accept, that I could possibly have difficulty with something they took for granted. I knew what didn’t work, all too well, but I had no idea how to even approach the problems, much less solve them! If I hadn’t been so adamant, and so persistent, there never would’ve been “permission” (so to speak) to find the answers, or even definitively define the problems! I also, at the beginning, was still just learning how to use speech to communicate. I was somewhat proficient at using written language to express myself, but doing so in real time, and certainly using language through the method everybody else insisted defined personhood and humanity, was something else entirely!! In many ways, speech was still the bane of my existence. And then there was the whole aspect of pragmatics! Ugh! My speech pathologist at the time commented once that the reason I was so much better at communicating through writing was that “there are no pragmatics in writing”. It certainly would explain many of the difficulties I had (though not all).

It wasn’t until I had my disability diagnoses that I could finally start properly defining the problems, and could get some information/education on the real causes of them, rather than just the old standards of how I was “defective”, or that it was my fault, and the result of my “attitude”, or “behaviour”. This information flow began when I was diagnosed with a mixed expressive/receptive communication disorder, a few years prior to my autism diagnosis. I received some very useful suggestions from the SLP, and later, the audiologist who diagnosed my auditory processing disorder, about how to tackle some of my difficulties, and how to make them less problematic. I was taught some coping strategies, as well as practical suggestions as to what I should ask other people for, in terms of accommodations, or just plain old patience and understanding! I was also finally provided some very valuable information about how communication worked (and didn’t work) in nondisabled people, and about communication repair, and all sorts of other things that helped me realize that not every communication breakdown, or misinterpretation was my fault. I remember how earth shattering that was, the first time it really sank in that it could possibly be the other’s person’s fault and not mine! Or, in other words, (My SLP’s to be exact), “It takes two people to have a conversation. True communication doesn’t happen unless both parties are successful at understanding the message.” (Okay, that’s only partly verbatim).

Of course, receiving my autism diagnosis, first the unofficial one, where I “fit in” with other autistic people, when I joined ANI, and especially at Autreat, and was accepted as one of them, then later, my official one, once we finally found someone who was both available and capable of providing it, (after several false starts) was an absolute game changer. It was totally ground-breaking. (Not really earth shattering, at least not for me, since I’d long suspected it). Being able to explain why so many things others took for granted were utterly baffling, or detestable, or oppressive, to me, was huge! And, of course, finding a community of other people “like me”, who believed, as I did, that this is the way we were supposed to be, and who were committed to finding ways for us to exist, and function in the world in a manageable way, one that was non-destructive to our sense of self, was fundamental to everything that’s come since. I was exposed to, and educated about, so many aspects, and potential aspects, of being autistic, that I never would’ve known about otherwise (and some I may have eventually learned about anyways).

Learning about Sensory Integration, for example, and all the complexities and subtleties of it, (both from books, and websites, and real people dealing with it – both personally, and professionally) was another one of those fundamentally world-changing experiences. Learning about hyperlexia, from other hyperlexics, was another very useful thing. And, of course, that led to my exploration of printed matter on the subject.  Learning that there’s a strong connection between autism and ADHD was also informative. And these are just a few examples. It took me probably 10 years before I felt that I had a good grasp on what it really meant to be autistic. And during all that time I was learning about self-advocacy, and how to interact with my professors, and support services, and medical professionals, and Disability Services for Students on campus, and… other people. I was also learning about where and how far I could “push the envelope” in terms of what people could be expected to make exceptions for, or provide different ways of doing things, and where I needed to figure out how to conform, or find my own solutions, to make an inhospitable environment workable. Additionally, I learned when, and how to push my own boundaries in terms of my capabilities, in a safe manner, and when to stop, or leave an overwhelming or noxious environment or activity.

 This last was a very important skill that I was not allowed to develop when I was growing up. In fact, there were many, many occasions when I was trapped in overwhelming environments, or situations, and not allowed an escape, because it was not “normal” to want or need one. The thinking at the time was that I would learn to tolerate such environments if I was forced to endure them enough. There was no recognition of my increased sensory sensitivities, nor of my fundamentally impaired level of social or communicative abilities (compared to NTs). There were no allowances made for difference, or diversity, in society, or in my family. Any difference that was noticed, was blamed upon me, and my “immaturity”, or my “bad attitude”, or worse. Somehow, despite it all, I never gave up on myself, or stopped listening to myself when I said “this is too much” the way so many people in society succumb to. I wasn’t able to physically do anything about these situations, but I maintained a recognition that they were too much, and overwhelming. And of course, I developed an aversion to anything resembling these situations (and, as an adult, when I was allowed more autonomy, developed the habit of unconsciously scanning for exists to every room I entered, for many, many years. Something I later learned was a typical response to trauma).

Just to be clear, I don’t disagree that it is sometimes necessary to push one’s limits, and expand one’s comfort zone (sometimes with the help of trusted others), because without this there is no growth, but there also needs to be respect for those times when pushing those limits would truly be too much, and would overwhelm one’s coping abilities. Everybody needs rest periodically, and some people need longer, and/or more frequent periods of rest than others do, between new experiences. When one is never allowed to escape things that are overwhelming, the only thing accomplished is trauma. As society gets better and better at recognizing trauma, and how it manifests differently in different people, I hope that we become more understanding, and more flexible, about letting people define their own comfort levels and levels of exposure to stressful experiences.

I still find myself amazed at how often I find myself using all the people skills mentioned above, of late. I find myself using them in contexts that are different from the ones I learned them in, and as such, they take me by surprise (applying skills to new contexts being something many of us autistics find difficult, or near impossible). Many of these skills I thought I’d lost, through lack of use/need, but it appears they were only dormant. I’m starting to see that while my university career might not have yielded the typical benefits, or purpose, it has resulted in my gaining so many people skills and communication skills that are useful any time I run into conflict in my personal life, big or small. Or even when I find myself in an interaction with a friend, or, really anybody, come to think of it (though in different ways). And somewhere in all this time and effort, I’ve discovered the benefit of really connecting with people, and having deep supportive relationships, as well as the willingness to engage with unfamiliar people more. I’ve even noticed the beginnings of the discovery of what superficial relationships with people are about, and in general what people are for, rather than just individual relationships. Might’ve taken me a few decades, but I’m getting there.

My Experiences with Societal Vocational Rejection.

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© July 2021

(Contextual note: The experiences I describe occurred between the mid 1990’s until about 2014.)

(A note on terminology: I also use some outdated terms like “normal”, and “high functioning”, because those are the terms that were used at that point in time. As you’ll see they are used in quotations to note that they are now often considered questionable terms.)

I recently talked to my psychologist/autism specialist, and the subject of my experiences with job seeking, and other forays into the employment arena came up. We talked about the obstacles and barriers I experienced simply trying to find employment, never mind a career. How virtually everywhere I went, or anyone supporting me went, both my abilities and my limitations were held against me. Often at the same time. Essentially, I was treated as if I were too capable to be disabled, and too disabled to be capable.

I told her about how the vocational rehabilitation organizations were even worse than the ordinary community, because I didn’t fit their perception of what a disabled person should look like, and who a disabled person should be. They could see my intelligence, and education, and thought that didn’t fit with “disabled”. They preferred to blame my (what we know now are) autistic difficulties on psychological issues I was bringing on myself. In other words, they, much like my family, liked to pathologize my behaviour, rather than recognize that there were some things beyond my control that I needed assistance with. I was always told it was my fault that I couldn’t conform to NT standards and perceptions of what an employee (even a disabled employee) should be like. The term “invisible disability” was still largely unknown, or at least underground, so to speak.

I was told several years ago, by someone in one of the online supportive communities I was part of, that I was twice exceptional. She apparently worked in the field, and possibly lived in that world as well (either herself or through a child). I hadn’t even heard of the term at the time. But since then, I’ve looked into the subject a bit, on and off, and it does seem to fit. From what I can tell, it seems as if I would fit into the category of where both my disability and my ability essentially cancelled each other out, so neither was especially noticeable. By the time the term was mentioned, I was all but through school, so there was no point in pursing it officially. (I did, later, pursue, and accomplish, a second B.A., after my application to grad school was turned down, and I invested much energy into investigating whether my disability would interfere with my ability to succeed.) Considering how 2e students are just now starting to be recognized and (sometimes) provided appropriate support services, it’s a pretty good bet they’re not even being recognized in the employment domain!

Even after all my precautions, and discussions with 95% of the Psychology Department prior to beginning that degree, I still wound up struggling through a traumatic experience of academic discrimination and harassment from the 5% of the Psych Department I didn’t consult! A significant part of the trauma resulted from the fact that all of my considerable, and well-honed self-advocacy skills were completely useless in dealing with these people (Two graduate students and their supervisor). The whole experience, and multiple failed attempts to resolve the situation, at different levels of the University, almost led to me abandoning my honors degree.

However, eventually I managed to get support from the University’s Discrimination and Harassment Prevention program that resolved the situation sufficiently for me to continue. It took me years to even start to recover from the trauma of that experience, however, and I’m only now, more than ten years later, beginning to be able to see it as an experience of academic ableism, rather than a personal attack upon me specifically, and disabled students in general. The irony that it was the psychology department that I had the worst experience of ableism with, is not lost on me.

Which brings me to another relevant subject. All my life, everybody around me had plenty of suggestions about where they thought I should look for employment, and what my strengths “should be”, but when it came to actual practical suggestions about how to go about doing so, I was left to my own devices. Additionally, I was turned away from everywhere I asked for help, because “we don’t know how to deal with disability”, or “your kind of disability”, depending on who I asked. Or sometimes plain old “we don’t deal with disability issues”. As usual, (hello autism), there was a huge chasm between where people thought I should be at, or should just automatically know, or be able to figure out, and what I actually understood, or was actually capable of doing. And there was nothing to help me jump that chasm.  (I’d say “bridge”, but honestly, the expectation was that I jump it. If it was acknowledged that it was there at all.) And of course, I was berated, and denigrated for not being able to, and for my reluctance to try to do things I either didn’t comprehend, or knew were beyond my capabilities. I was also berated, and denigrated for my resistance to making the effort, when people would push me to, and try to force the issue. (But, you know, after you fail and fail and fail again, eventually you lose the motivation to try any more when you know the outcome won’t be any different!)

Nobody listened to me when I said “I can’t”, or “I don’t know how.” Because I was obviously intelligent, everybody told me “Of course, you can, you just don’t want to. You have to try harder.” (Oh, how I hate those words “try harder”!! You don’t know how many times I was told that, over, and over again, about so many things!!!! That was the universal response any time I “failed”. When I failed to “get it right”, to meet expectations, or behave “properly” – that is, in the way a typical NT would, socially, interactively, communicatively, emotionally, whatever.) They told me, “Of course you know what to do, what’s expected, what we mean,” etc. etc. “You just don’t want to. You’re just being difficult, being obstructionist,” whatever. And I mean about anything, really, not just the job search thing, or employment issues or related matters. I mean anything. So, needless to say, I stopped asking questions about anything that was considered ‘weird’, or ‘obvious’. Although late in high school, and in early University, I started to find the rare person I could ask ‘stupid’ or ‘bizarre’ questions of.

And then, of course, I found Autism Network International (ANI), and with them, a whole bunch of other people who didn’t understand the same things I had issues with, so I could ask those questions. And sometimes I found people who had answers, and were willing to explain, without accusing me of being “difficult”, or other, worse, things. It’s one of the reasons I’ll typically explain the answers to “stupid” or “obvious” questions other autistics ask. Because often they really don’t know the answer, and are honestly asking, and other people aren’t likely to take them seriously, or even answer them at all.

I encountered an online invitation for a survey on barriers to employment for autistic people that some Canadian organization I forget the name of, was doing this past February, (and are presumably still working on developing the results of, etc.), and as I finished completing it, I realized it was the first time I’ve ever felt heard on the problems I’ve experienced with employment, much less felt understood. Previously I’ve always been silenced, and dismissed any time I’ve interacted with anybody with the power to do anything about the issue. This was the first time someone actually wanted to hear my experience(s), and was actually educated enough on the subject to ask the right questions to make me feel it was worth answering.

They knew that the barriers and obstacles had mental health effects, and that those in and of themselves were further barriers and obstacles. I’ve never heard anybody address that before! That’s what led me to realize, afterwards, that the whole subject of employment had long been a traumatic one for me, but that I’d never had the words to explain it, even to myself, so I didn’t know why those conversations were so difficult for me. I didn’t know how to articulate why the very concept of employment was so distressing, and overwhelming, much less why I felt so incompetent when it came to the subjects of being employed (though I knew I could keep a job if I could ever get past the interview stage), and of job seeking. Decades of silencing, ignorance and intolerance had a cumulative effect on me, and led to an understandable, instinctive aversion response.

Even being able to tell people that the difficulty I had with getting a job was the interview part, wasn’t very effective. Most people never understood what I was saying. They assumed I had “normal” interview stresses and worries. They also assumed that the usual solutions would solve the problem. (Much like people typically assumed that the usual strategies for dealing with public speaking issues would solve my issue with speaking to strangers, and/or class presentations and/or class discussions. And (almost) nobody ever listened when I told them there were bigger issues involved. Again, “Hello, autism.”) They never listened when I told them there were other issues, or that NT expectations and assumptions about verbal and nonverbal communication, and social interaction norms played a huge role in the barriers I experienced. I knew I would be rejected from an interview due to these assumptions and expectations, even if I was fully capable of doing the job posted. (Appearing ‘weird’ never goes over well in such situations!)

And of course, people listened even less when I tried to explain that even if I did try to force myself to go through an interview in a “normal” fashion, it would result in people having unrealistic expectations of me, expecting abilities and behaviours of me that I couldn’t deliver, and then they would get all pissed off at me for not being who they expected, and, essentially, for not being NT. And, of course, NTs typically have consistent functioning levels, which was impossible for me, due to the nature of autism. (And my functional level has certainly fluctuated wildly over the years, often from one moment to the next, never mind one day to the next!)

And I’ve left out a description of the whole terror of taking résumés around, and the actual interviews I did survive, etc. I’ve also left out a description, here, of my experiences in the few jobs that I actually did have that were never going to go anywhere, and that all got derailed for one reason or another (medical, or undiagnosed autistic difficulties being the most frequent).

Even the attempt through a newer vocational rehabilitation program after I graduated from university the second time (just under 10 years ago) was basically a train wreck. For so many reasons. They were another one of those sets of people who, rather than assuming I knew things I did not know, went too far in the other direction, and “talked down” to me.  They assumed I didn’t know, and didn’t respect other people enough to know, or take seriously, basic stuff that had been drilled into me since I was tiny. Things like showing up on time, how to dress, how to respect other people, etc. But at the same time, they assumed I did know other things that I didn’t know, or am not capable of doing, certainly not consistently (socially, and communicatively wise). Some of which, I still don’t know or won’t ever be capable of. (I know, “ever” is a strong word, but by definition, being autistic means that some NT things will forever be out of my reach, and beyond my comprehension.)

 In other words, I “got it coming and going”. Again. Most of my life, people’s expectations of me were too high, and based solely on my intelligence, but after my autism diagnosis, occasionally I’d have someone who’d assume that because I was disabled, I knew nothing, and had no respect for common standards of behaviour. And these people were usually quite resistant to being corrected, or moving onto another subject. And when they did change the subject, then they’d start assuming I knew things I didn’t, and understood things I couldn’t. And they’d get all upset, and blame me, if this were pointed out to them, or we ran into a roadblock in my abilities.

 Additionally, with the people from this particular vocational rehabilitation program, there was the whole job interview rehearsal thing. THAT was the real train wreck. Once again, I was made to feel incompetent, because I didn’t know how to answer some of the questions. Especially not off the top of my head. I had a mental block about some of the others, and was made to feel incredibly stupid for this as well. That woman was really insulting about that, actually. Come to think of it, that was another experience to add to my list of traumatic experiences. (No, I don’t have an actual, physical one, but I probably have a mental one, if I really thought about it, all at once. Except that would be overwhelming.) Even with help from my support person at the time, on a different day, I still had a hard time coming up with answers to most of the questions (after they eventually decided to send them home with us!) The whole process was pretty torturous.

I think in the end, (as I read those sentences from the screengrab of the sentences that were eventually created, and entered into the speech synthesis program I used at that time), I just finally typed what my support person told me to. Some of the questions were related to self-promotion, which I’ve never been good at. [Probably, upon reflection, because I was always berated so much about everything, and also because somehow, somewhere along the line, I was told it was a bad thing to promote yourself, at all, in any way. (And perhaps, being autistic, I took that a little too literally, or too absolutely. But then, there were so many contradictions in things I was taught that made absolutely no sense, but that somehow do, to NTs.)]

Even after that, in terms of the relationship I had with my actual worker, (instead of the “workshop” leader who did the job interview preparation thing, or the intake interview) there was that whole NT unspoken assumption where, apparently, I wasn’t supposed to expect my worker to actually be able to do their job, and contact me when they had something for me; I was supposed to harass them on a regular basis, and ask them if they’d found anything, even though they said themselves they weren’t likely to find anything and didn’t even know what they were doing when it came to either autism, or the professional workforce (as opposed the labour force).

Before I ever met anybody from that organization, when mom called them for information etc., they said they may not be able to help, because they primarily only find jobs in the labour force, not the professional one. The person mom talked to also told her that they didn’t know much about autism in people like me. They were willing to try, but were unsure they’d be able to help (and yet they were the closest option that existed at the time for “high functioning” people like me who still needed help gaining employment, so we figured we had nothing to lose.) Sure enough, they were pretty damned clueless when I dealt with them. They had all sorts of crazy assumptions (both in terms of over, and underestimating me, and then there were the just insulting and/or offensive ones.)

My first autism specialist was just starting to get me to figure out the whole self-promotion concept, and had mostly convinced me that I could do anything I wanted to enough, and that we’d find a way to make it work, when that academic discrimination and harassment described above wrecked everything. That is certainly one of those permanent losses I’ve experienced from that experience. (Or, at least as far as I know. I’ve discovered stranger new abilities, or willingness to attempt risks I’d never have considered previously, so maybe not truly permanent, but it feels that way so far.) The graduate students and their supervisor were quite adamant that not only did I not belong at the University, but that I didn’t belong in society, and that I should, essentially, go crawl back under the rock I came out from, and never come out again. And they were quite vocal about it too. Of course, they also thought I was the one who was causing all the trouble in that relationship when I refused to be cowed, and insisted on calling them on their discrimination! (I didn’t know it also qualified as harassment at that point yet). They thought I was being obstructionist.

Actually, now that I think about it, they were the ones being obstructionist, given how they refused to talk to anybody at Disability Services (DSS) who would’ve actually given them an accurate perspective on the situation, or helped them to understand what the problem was, and defuse it, maybe even resolve it. (They insisted on only talking to the one who had exacerbated the problem, and thought that DSS was only for students. They had no idea that at least half of DSS’s job was to educate faculty and other teaching people and whoever else needed information on disability issues etc.)  

Back to the overall subject of employment attempts. I tried so hard, for so many years, and with help from various sources; I found out what kinds of accommodations I would need, and what would be reasonable to expect, and all of that. I tried several different ways of attempting to figure out what would be a good field for me, or a good trajectory, or… whatever. All those things one is supposed to do to figure out where one fits in the world, and how to make self-sufficiency (often synonymous with “adulthood”) happen. And it all was a complete bust. Society has been very clear that it wants nothing to do with me in terms of employment, or even employability, so I’ve pretty much come to the conclusion that they can go to hell. Disability funding seems to work better than anything else ever has, so, why mess with what’s not broken? They seem to have always been much happier doing that then they ever were any time I attempted to do what I was “supposed to”, and try to find a way to support myself. So be it. We’re both a lot happier this way, and I’m fine with my life the way it is, and don’t want anything else, so, it will be what it will be. I don’t mean that to sound as if I want to “sponge off of” society, or feel society “owes me” anything, or anything of that nature; it’s more about “I tried everything I could to do otherwise, and was rejected. I can’t try any more. It’s too traumatic. I’ve made a good life for myself despite it all. I’m not willing to sacrifice that.” (see below)

I’m still working through the anger, and rage, and grief at society, and at the people who were actually in my life who pushed so hard, and so cluelessly, and so intolerantly, but at least I have words for it now, and am starting to be able to realize I wasn’t the one at fault. I did everything, and more, that was asked of me, over, and over, and over again, and sought out so many different avenues, and strategies, and, tried so many different ways to make it all work, without compromising who I was/am, without twisting myself into some sort of contortionist act that would’ve involved broken pieces, and irreparable damage. (What I’ve already dealt with is bad enough, thanks.) I guess some people can live like that, and are able (and maybe not even aware that they’re doing it, at the time, or sometimes ever) to make the necessary contortions and sacrifices, at least for a while, but all I keep hearing is that the people who’ve done that, always later regret that they did so, and wish it hadn’t been demanded of them. And they have a hell of a time recovering from it. I’ll take my mental health, my peace of mind, and strong sense of self over “fitting in”, or “being successful” in the traditional, financially independent, career-oriented sense, any day.

It seems that the problem I had was that it just pissed so many people off (or maybe they were jealous?) that I refused to bend and break that way, from the time I was a teenager (and possibly earlier, if I thought hard enough about it), because I already knew from experience that that kind of thing wasn’t survivable for me. And since survival and functioning were both mandatory, I had to do what I had to do. And refuse to do what I had to refuse to do. (Or find a different way to do it, that was manageable, no matter what it took.) They insisted I be this verbal, social, happy being, essentially, everything I wasn’t, and since I’ve never been any good at being anybody other than myself, I had to rebel. And resist. And find something that would work for me. That ended up being to not play that game at all. I had to pretend to, for many years, but in the end, society rejected me, so they can “take this [concept] and shove it” to quote the Johnny Paycheck song.

And, thanks to that employment barriers for autistic people survey from earlier this year, I even have, if not the exact words, at least the concept, to retort to anyone who protests at any point. I can tell them, truthfully, that it would be too much of a detriment to my mental health to go that way again. To subject myself to any of that crap again, no matter how much progress has (or hasn’t) been made in understanding autistic needs and abilities, and equality, and diversity, and all of that stuff. It’s all too little too late, as far as I’m concerned. My few forays back into society recently have shown me that none of the problems have disappeared, and while people may be more tolerant of difference these days, they aren’t any more educated on the subject; in fact, many of them are even more clueless than they used to be. And I just don’t have the energy I used to have to fight with them. I’m done. 20+ years, roughly, of fighting them tooth and nail is more than enough for me. I just don’t have it in me anymore. The risk/reward ratio is far too unbalanced in the wrong direction for me to bother expending the effort, and risking what I have. 

I’ve decided to make this document public, after originally writing it for personal use, in the hopes that my experiences can help someone else with similar struggles to feel heard, and perhaps supported, in their own battles with the inherent ableism in society, and especially within the field of employment. I’m also hoping that perhaps it can help non-autistic (NT and otherwise) professionals and family members, and anyone else who cares about mitigating the struggles autistic people face in the Neurotypical world, understand the barriers, and obstacles we face, both in practical terms, and in terms of the attitudes of ignorant and/or intolerant non-disabled people that are inflicted upon us.  Since knowledge is power, hopefully education on these issues can lead to a reduction in such experiences for current and future generations of neurodiverse people, and greater acceptance of neurodiversity, and diversity in general.

Overcoming The Staggering Odds Against My Ever Finding Speech Useful

Photo by Lukas on Pexels.com

© June 2021

I was reading a book recently, and it got me thinking about my childhood, and my issues with speech. I started thinking, “How could I possibly learn that speech was useful, or beneficial when my auditory processing was crap, I had coordination issues, and other motor control issues (vocal spasms, and failures of my voice to initiate, for example), the “probable apraxia of speech” the speech pathologist noted when I saw her in adulthood, (probably related) pronunciation issues, and everything I did say was denigrated, dismissed, or ignored! And that doesn’t even take into account the cognitive issues I had getting my thoughts into words in the first place!

Then you add in the demand that I understand and use the concept as easily as the rest of them did, but was constantly told I was doing things wrong, and should not say most of what I did say (God forbid anyone actually know what was happening at home, or in my family). How could I possibly figure it all out? I remember it was a constant struggle to try and figure out what the hell was wanted from me. Expectations were pretty clear, (and overwhelming, and often impossible to meet), but the specifics of how to actually do what I was supposed to do (or not do) were sorely lacking, and often changed on a whim. How anyone is supposed to know what the “right” answer is when that answer changes for no reason, and without warning, I’ll never know!

And that’s not even considering that I didn’t really understand the meaning of the spoken word, in many ways, until I was about 10. I used it, because I was forced to, (I finally caved to mom’s relentless pressure to repeat the words she was saying, when I was 3, hoping if I relented once, she’d quit pushing, but it only encouraged her to push harder. A couple of years later, I became convinced speech was futile, but because of my family’s intolerance of differentness, I was too afraid to stop using it, and violate the rule about “normal behaviour”) but I didn’t really communicate with it. I didn’t know how. For many of the reasons above, I’m sure.

Considering how garbled the input would’ve been, (physically, due to my auditory processing issues), as the SLP I saw when I was 19 said, “Speech was never intrinsically meaningful for you”. How could it have been? Coupled with all the negative feedback I got, and all the conflicting feedback I got… never mind the assaults on my intentions and “attitude”. For example, Mom often insisted that my brain’s automatic turning off my ears when it was overtaxed, was an intentional act of “tuning out”, even though I usually wasn’t even aware it had happened until my brain turned my ears back on! This was something else that was the SLP explained to me. She said it was a result of my auditory processing issues, and brain/memory overload. Specifically, the problem is that my brain doesn’t hear words as whole words, the way most people do. It doesn’t provide that memory “chunking” that is so typical of most people’s auditory processing. Instead, my brain needs to manually put all the sounds together into each word, before it can understand what it is hearing, and because human working memory has specific limits (Seven pieces of information for three seconds), my brain is constantly being overwhelmed, and turns off new input while it plays catch-up.

The more I think about it, the more I realize that it’s a bloody miracle that I ever learned that communication could be either effective, or meaningful, rather than just another overwhelming, oppressive demand from the rest of the world! It’s an even bigger miracle that I could ever come to the same conclusions about speech, much less become (mostly) comfortable with it, so much of the time!!! Without my hyperlexia, I doubt I ever would’ve had the inclination to discover the purposes of language, and without Jim Sinclair and Autism Network International (ANI), I certainly never would’ve found the desire to use any of it to communicate! Not with so many different people, that’s for sure!!

I keep coming back to the thought that I was 14 when I discovered (through a classmate, and a school poetry assignment) that written language could be used expressively, and that I only started to be able to use speech in a meaningfully communicative manner shortly before I turned 18, (because the few teachers I had shown my writing to, in a desperation to be heard, relied upon speech/sound to understand what they were reading, and then they struggled to get me to discuss it in person) though it took me a few years yet, to figure out how to do so effectively.

A significant part of making it all work was making the choice not to use speech as my primary form of communication for many years. It involved much experimentation with AAC to discover what worked best, when. The resultant discovery that communication was something I could control, rather than something that I was controlled by, was a crucial early step. Eventually the discovery came that sometimes, speech did have its uses, and was the best option. It was a rather grudging admission, when I made it, but one I did eventually make. As long as nobody was expecting me to use speech more than I was capable of, or, God forbid, 100% of the time. (Which too many people did! The “moving target” nature of invisible disabilities was still mostly unheard of, even by service providers – including medical professionals and government workers.)  

I taught myself to read at about 2 years old, could spell significantly better than almost anybody else for my whole childhood, (until I was exposed to email in university, which both increased my typing speed, and reduced my accuracy), but it took a classmate to show me, in my teens, that writing, and by extension, that language itself could be used expressively! (Communication came later). It took several more years afterwards for me to even begin to understand how to use language in the form other people used most, and took for granted (i.e., speech)! Which leads me to the subject of discrimination and subjugation caused by the (typically unquestioned) societal conviction, that “speech is what makes us human”, “those who don’t use speech are subhuman” garbage, but that’s an entire issue all on its own, and venting my aggravation (and that of many in the disabled community) about that form of ableism would distract from the subject at hand, so I’ll leave it be for now, even though it’s also an extremely important problem.

It wasn’t until I met others (initially online, and later in person) who also have difficulty with the very same things I do, that most people take for granted, that I learned that there was a purpose in engaging with the world, and forging my own place in it (which sometimes meant demanding the world allow me to have one.) It took a community of other people “like me”, who struggled similarly, and still found a purpose in participating in the neurotypical world before I started to be able to see past my own trauma, and my own resistance to dealing with such an overwhelming, and intolerant world.

It took disengaging from “normal” methods of interacting with the world, in order to discover there were some ways I wanted to be involved, and some people who were worth it. It took discovering alternative, even “odd”, or “strange” ways of interacting with the world, that worked for me, for me to realize what and how I did want to interact. It took throwing out the NT “rulebook”, and creating (and co-creating) a new one that worked with both my limitations and my abilities, whatever they were. And in the process, I discovered much more about what both my abilities and limitations actually were, apart from the trauma induced by being forced to function in a world I didn’t comprehend, and couldn’t conform to.

When I consider all of these things, I realize that all of these difficulties with speech, language, and communication, probably explains why I have more in common, in many ways, with nonverbal and minimally verbal autistics than I do with Aspies, particularly those whose only communication issues are with social language.