Beyond the Iceberg: Voices of My Inner World

I’m hoping I reblogged this properly. the process seems to have changed since the last time I’ve done it.

Unfortunately, this is an all too common experience for many people who don’t get diagnosed until adulthood, or who were diagnosed as children back when society’s understanding of autism was “in the dark ages”. Far too many of us adults on teh spectrum can relate far too well to this post!!

More than One

What if the things we perceive as weakness are actually strengths in the big picture? What if children who exhibit challenging behavior are actually trying to communicate something deeper? Those were some of the questions that I’ve always had as a kid that I didn’t know how to verbalize. I had a lot of struggles learning in school. I was given the proper training as a blind person such as orientation and mobility, where you use a white cane to travel, memorizing tactile and auditory landmarks/cues. At the time, I was diagnosed with a now outdated form of autism,but it was overlooked because of how capable I appeared. I was given a lot of tools that typically work for the blind, where my sensory differences due to autism would overlap, working against the tools I was given. This, I did not know how to communicate with my caregivers, which was…

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Why I’m Glad My Kids Have a Mom With Chronic Illness — Livable by Design

Chronic illness impacts the whole family, but some of that impact is for the best. Here are some reasons I’m glad my kids are living with my chronic illness.

Why I’m Glad My Kids Have a Mom With Chronic Illness — Livable by Design

Now that I’ve learned how to share other people’s blog posts, here’s another one I couldn’t resist reblogging here. WordPress Reader recommended this one to me, and I’m glad it did. I had to share. Sometimes we get so bogged down in the “difference” part of disability, the bias, the stigma, and the discrimination, we forget about the good things. We forget about the important skills, the important lessons we learn from disability, and those we teach other people (wittingly or unwittingly) about how to be more human; how to be more compassionate; how to be more accepting of others, especially those who are different than us.

This article is a good reminder that there is an upside to disability, even when all we’re feeling is the downside.

Bias Check — MetaCocoMom & the JSquad

Trustworthiness is partially measured by consistent behaviors. People tend to trust people with consistent actions. My best friend always returns my call. We both lead busy lives. His work and married life keep him on the move. I ride a pendulum between over-achiever and hermit. I don’t expect him to always be able to pick […]

Bias Check — MetaCocoMom & the JSquad

Another WordPress referred article I’ve found that I absolutely love!! Just had to reblog!

Autistic traits you don’t see on the teevee — Some Autistic Chick

… Did I leave the iron on? If we know anything about autistic people, it’s that they’re stone-faced, genius, antisocial assholes who are really good at math and see numbers and diagrams floating in the air every time they need to solve a problem. If they’re not that, they don’t talk or make eye contact […]

Autistic traits you don’t see on the teevee — Some Autistic Chick

WordPress Reader suggested this article to me tonight. had to reblog it too. I deliberately don’t watch most of the shows with autistic characters in them for precisely this reason. Especially in the last few years, it seems like throwing in a minor autistic character into an episode has become ‘in vogue’, even if it doesn’t fit with the story of that episode. It’s really aggravating, actually. I can’t say anything about the ones who focus on autistic characters as part of the series, because, as I’ve said, I avoid them.

Don’t get me wrong, on the one hand, I’m glad to see autistic characters on tv more than say, 10-20 years ago, but at the same time, it feels like we’re still at the “token autistic” stage, rather than at the true portrayl, much less actual representation stages. I hope we get there eventually. Seeing one’s self in the media is an important aspect of identity development. It is one that is often sorely lacking for minorities, unless it’s a negative portrayl. And obviously, when one only sees people like one’s self portrayed negatively, one often develops a negative sense of self, and self respect, and self acceptance are so much more difficult to acquire. I know there is research out there on these issues, but it’s late, and I’m tired, so I’ll let those interested look that up for themselves.

When You Listen to the Voices of the Non-Speaking — Misty Nodine Coaching

We have a strong but erroneous tendency to equate not being able to speak with lack of intelligence. When a child is growing up and their speech does not develop, we tend to make the assumption that the child is stupid. This is reinforced by the fact that our normal intelligence tests (IQ) tend to […]

When You Listen to the Voices of the Non-Speaking — Misty Nodine Coaching

I also found this blog post through WordPress Reader. I couldn’t figure out how to reblog/share it until the next day, when I figured out how to it with the previous post I reblogged. And it’s taken me a few days to figure out how to (and that I could) add my own words to explain why I’m reblogging it. (Or at least I hope that’s the right term).

I’ve always loved the t-shirt from People First that says “Not being able to speak doesn’t mean not having anything to say.” (It also came as stickers and a poster, if I recall). Having been on the other side of the intelligence and verbal ability stereotype, I can say it’s just as frustrating to be obviously intelligent, and yet struggle with verbal language, especially when written language has always been a strength. Having been forced into speech, without really understanding it, having had so many physical and cognitive issues with it, yet having no support with these (and my parents having no support, or even professional understanding), because “someone with your intelligence can’t possible have issues with speech”, especially decades ago, when understanding of speech and language disabilities was limited to “complete lack of language” or “pronounciation difficulties” … was needless to say, difficult.

Being an academically talented teenager, who had just discovered language could be used expressively, but who still couldn’t grasp that speech could be used similarly, was not particularly well received either. I could go on, but I’ve posted earlier posts on my struggles with speech and language, so you can go read those if you want to hear more about my experiences on those topics. Being in university, and still having only minimal interactive speech capabilites was no easier.

Assistive Technology is Terrific, But It Doesn’t Erase Your Responsibility to Be Inclusive — Writebook

Graphic shows pixelated image of several hands reaching up from the bottom of the screen to various icons representing different kinds of technology. Intercepting arrows represent relationships between many types of technology accessed by all the hands below. My fingers pounded on the keyboard angrily as tears of frustration ran down my face. A call […]

Assistive Technology is Terrific, But It Doesn’t Erase Your Responsibility to Be Inclusive — Writebook

This is a great article I ran across that my wordpress reader suggested to me. It provided me with the option to share it by posting it on my blog, as I’m not on any of the provided social media apps. I followed the instructions, so I hope I’m doing it right. It’s taken me a while to add my own words below. (Life got a little busy in the middle of learning how to share this.)

I can’t tell you the number of times I’ve encountered resistance, or outright objection to my use of AAC, for instance. Never mind the number of people who think telephones are accessible to “everyone”, just because they are, or because “well, everyone else can use TTY, right?” Answer: No. TTY doesn’t solve autistic language issues, such as difficulty with pragmatics, or not being able “think on one’s feet”, or all those other social communication issues. TTY doesn’t solve any trauma-related issues related to either phones, or interacting with unfamiliar, all too likely rude and intolerant strangers, medical professionals, or other service providers. TTY doesn’t solve the issue of “this is another new piece of technology I have to learn”. I could go on and on.

And then there are the sensory issues many of us on the autism spectrum experience, and the negative reactions we get when we try to act like responsible adults and self-regulate using anything from sunglasses and ear plugs, to stim toys. (Or harmless, but odd-looking stimming behaviour for that matter.) You know, those things that “look weird”. And that NTs interpret in all sorts of inaccurate ways that are inherently negative, because if you “act weird”, it has to indicate disrepect, right? (By the way, the answer to that last question is “Wrong“.)

And there are other issues I don’t have the energy to mention here, but I’m presuming anyone with any familiarity with autism or even other disability needs can fill in at least some of the “dots” with their own (or their relatives or friends’) experiences. And if not, try asking (politely) some of these people, about their experiences about not being to interact easily in a world not designed for them, and that expects them to make all the adjustments. Or in other words, expects them to behave nondisabled, and otherwise be superhuman.

Writing is My First Language

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Interactions with certain people in my life in the last year have caused me to do a lot of reflecting on my approach to language, communication, speech, and interacting with other beings in general. This led me to wrangling with a number of broader, related concepts. These included: how I came to understand what language even was; how I learned that language could be used expressively; when and how I learned what communication is, as opposed to what it isn’t; the various ways in which communication can fail; and what makes communicating at all worthwhile for me. Inevitably, I also contemplated the flipside of this last concept: When an attempt to communicate is not worth the effort to me, no matter how much society demands that it “should” be. Given that the topic of what makes communication worthwhile (especially linguistic communication) is such a complex issue, I found myself focusing on just one aspect of it.

The aspect I focused on was my struggle, as a newly-independent adult, to connect with the various people I needed to, in order to get my needs met (academically, physically, functionally, emotionally, or socially). At that point in my life, I struggled a lot, both against myself, and the world, in this aspect of things, for a few reasons. Chief among them being that I was still unsure about whether this whole “connecting with people” thing was safe, much less beneficial, and I was even less knowledgeable about how to make it work for me. Furthermore, after a lifetime of unrealistically high developmental expectations and demands, (thanks to my undiagnosed status growing up), and little to no support, I was hesitant to explore what my abilities might actually be, much less what they could become, without developing considerable reliable supports. A fundamental element of my attempt to resolve this conundrum between the demands of the world, and my own abilities, involved discovering which methods of linguistic communication I connected with, and which I didn’t. Specifically, it involved a lot of experimentation with various methods of AAC.

So, naturally, when I was recently reflecting on the subject of communication, my thoughts went to this aspect of my experiences. Just as inevitably, my thoughts also went to the pressure I’ve always been under to use speech in countless circumstances where I wasn’t comfortable with it, or couldn’t rely upon it to be effective. My thoughts went to how my experiences with what works and what doesn’t, what’s comfortable, and what isn’t, has evolved over the last couple of decades.  

After a while, all this contemplation resulted in a realization: There is a reason why I still have such conflicted feelings about speech, why it still doesn’t feel instinctive, despite the greatly reduced number of difficulties I now experience, and its increased reliability. Why speech sometimes still feels unnatural. That reason is, for me, speech has become a secondary adaptation I’ve developed, as an adult, to meet my need to interact with the world, with other people, and to generally live my life.

Other people are so obsessive (and obnoxious) about the importance of using speech, (partly because they seem to need to hear words to understand them), that I have constantly been pressured, throughout my life, to use it, even when it was clear it didn’t work for me. I’ve been forced to use it before the sounds made any sense to me, when it physically or cognitively didn’t work for me, and even when it was physically painful for me. To say nothing of the separate issue of the sensory overload of trying (mostly unsuccessfully) to listen to the sounds I was making caused. The demand that I use speech, and use it “normally”, (appropriately, competently, fluently), was overpowering, and unrelenting, throughout my childhood. It wasn’t until I became an adult, and found Autism Network International (ANI) online, that I discovered I didn’t have to be trapped in the (metaphorical) straightjacket, or prison, that my environment, and society claimed was the only option.

When I found ANI, the world was overwhelming, overloading, and generally impossible to manage. And since I had no disability diagnoses yet, (as no one would believe someone with my intelligence could possibly have any significant disability), the standard NT expectations for an independent adult were in place. Expectations that I was incapable of meeting. ANI, and in particular autism self-advocacy pioneer Jim Sinclair, showed me that it was possible to exist in the world, without being psychologically annihilated. A key part of my liberation in this sense came when Jim encouraged me to find a system of communicating with the world that worked for me, no matter how different from “the norm” that was. It was part of Jim’s assurance, and encouragement that being a part of the world was not only possible, but worth the effort. That we had the right to be ourselves, to exist, be autistic, even in public.

As I struggled to find my place, to risk existing in the world, to participate in a way that was tolerable to me, I instinctively turned to various methods of AAC, and abandoned speech as my primary method of communication. In doing so, as I’ve mentioned in at least one other blog post (Overcoming The Staggering Odds Against My Ever Finding Speech Useful), I discovered the true meaning of communication, and discovered I actually did have some use for it after all. There were things I wanted to express, and people I wanted to express them to, beyond screams of rage and pain. I also discovered that speech did have some uses. For instance, Jim taught me that vocal sound could be used for play, and not just “work”, through the use of echolalia. As my resistance to the use of vocal sound reduced, I became more willing to consider using it. In the process, discovered there were a few occasions where speech was the most effective method of expressive language. That speech wasn’t universally threatening, painful, overwhelming, and noxious. I became more and more comfortable expressing my thoughts and feelings, as well as my needs and wants, to other people, including unfamiliar professors, medical professionals, and other services providers (instead of avoiding direct interaction, and insisting on using intermediaries).

In other words, I began to progressively engage with the world, expanding the bubble of people I considered safe (after discovering I had a bubble of safe people), as long as I had my safety net of AAC, and/or proxies and support people. But despite how effective AAC was proving for me, in terms of my being willing to interact with the world independently, most people in my environment continually pushed me to become more and more verbal. This was true even for people who respected me for who I was, and my unique (and often apparently bizarre) pattern of strengths and limitations. They saw AAC as a temporary “crutch” (in the negative sense of the word), that I would, and should, eventually discard, once I became more proficient, and therefore comfortable, with social interaction. This ubiquitous attitude forced me to contemplate what the factors were that made me comfortable or uncomfortable interacting in real time with different people, and in different situations.

(I suppose I should point out here that, because of the pressure to use speech, I did discover that there were certain circumstances under which speech was possible, even manageable. Mostly these circumstances involved familiar, nonjudgmental people, who were more interested in that I communicated, rather than how. And of course, this was in quiet environments, where sensory overload wasn’t a problem. In these circumstances, we discovered that I was even capable of being articulate, at times, as my skills with written language (e.g., with grammar and vocabulary) transferred over into speech. I’m pretty sure this was one of the reasons people had a hard time understanding just how much more difficult it is for me than it is for them, to use language interactively.)

Their attitude made me evaluate under which conditions I was willing, and capable of, interacting in the expected, “normal” (NT) fashion, and when I needed to do things differently. How context, environment, and familiarity played large roles in that equation.

The pressure to conform also pushed me to pay attention to how long it took me to become comfortable with new people in my environment (e.g., new professors). It compelled me to examine what role motivation played in my willingness to communicate with different people, and in what form. To explore to what extent organic disability was truly involved, and what role unrealistic and overwhelming expectations from my family and society played in my aversion to so many “normal” tasks and demands. Needless to say, the answers to those questions are complex.

Now, don’t get me wrong, I did have a lot of support in dealing with my autistic burnout and related difficulties. That support resulted in my learning to switch my expectations to a more reasonable, self-compassionate perspective, rather than blaming myself for not meeting NT standards of behaviour or achievement. Part of learning self compassion was learning about how much more susceptible to stress autistic functioning levels are compared to NTs, (see Amitta Shah’s description of “autistic stress” (Shah, 2019) for further discussion of this subject), and that I needed to allow my expectations of myself to fluctuate much more than NTs typically do. My involvement with the broader disability rights community (both locally, and internationally) also provided me with considerable new understanding about what life as a disabled person is like, in terms of challenges nondisabled people don’t experience.

But for all the support I received, I also experienced a lot of pressure to conform, predominantly in the area of speech. Perhaps more than any other area. I experienced a lot of resistance, and rejection, from people who didn’t know me, who only saw my intelligence, and academic ability. From those who saw me living independently, and had ableist expectations and assumptions they refused to be shifted from. People who did know me were more compassionate, more understanding, more accommodating, and yet, as I’ve said, there was still pressure, to various degrees, both explicit and implicit, from many of them.

As a result, with the support of other autistics (namely other ANI members), and that of my first autism specialist, I learned to adapt when, and where I could, while still respecting my own needs, and my own right to be different. I learned many things, developed a great number of communication and interaction skills, to the point where it often seems that I’ve never had difficulty with expressive language. People assume that speech is natural for me. I often come across to people as articulate, both in speech, and in writing. People assume that my only, or at least my main difficulty, with speech, or with communicating in real time, is the result of anxiety. (And the number of people I’ve wanted to metaphorically strangle, over the years, as a result of this dogged assumption is enormous). If, by chance, some of these people admit that I may truly have an expressive language disability, they assume I’m exaggerating the extent of it. Their disbelief is magnified when they realize how advanced my writing abilities are. (See my earlier post The Ableism Inherent in the Apparent Paradox of Intelligence and Autism)

Yet, despite all of the progress I’ve made in communication skills, my verbal abilities are still not anywhere near natural, even now. Yes, many of my skills have increased exponentially (e.g., my expressive language, my ability to “think on my feet”), and many of my difficulties have decreased greatly (e.g., keeping up in real time conversations; getting my brain and muscles to cooperate with transforming my thoughts into words, then my words into motor commands). My ability to rely on my vocal system to cooperate with initiation and coordination has increased greatly, as my vocal spasms were, inexplicably, drastically reduced for several years (though they’ve flared up again in recent years, along with the pain that accompanies them). So, yes, from the outside, my verbal skills look natural. Most of the time, the difficulties I still have, (physical, cognitive, and the interaction between the two) don’t show any more, but my primary orientation to language is still through the written word.

My auditory processing difficulties still exist. I still have difficulties with language organization. It still takes me more words than an average person to express ideas. The SLP I saw briefly in early adulthood, once described the issue as: “It takes you 80 words to say something it would take other people 20 words to say.” I have had a lot more practice pruning and editing my words, after all those term papers at University (through 2 B. A.’s), and all my advocacy work (for myself and for others) during those years. But if I’m just thinking out loud, verbally, or in writing, then I don’t bother. When I’m interacting with someone that I’m comfortable with, I’m also typically less careful with my words. Even with my increased verbal abilities, with my increased expressive language abilities in general, I still think best when I’m writing. Whether it is with a pen, a physical keyboard, or a virtual keyboard, my thoughts flow best when I have writing implements in front of me, with or without an intended audience for them. (The above-mentioned SLP’s explanation was that the motor command pathway between my brain and my hands has probably just worked better for me than the one through my vocal system.)

Furthermore, with a greater understanding of my disability issues, came the understanding that my brain has a limited amount of energy available for language processing, and for language production. Once that’s used up, that’s it. I can’t handle any more. I need to rest for a significant period of time before I can manage more linguistic demands. Sometimes I have different amounts of energy for one vs. the other, but it’s still limited compared to NTs. NTs seem to have an unlimited ability to handle language, even when they are “talked out”. The best method of resting, even recharging, for me, is to listen to my favourite music. For whatever reason, even though there are lyrics to it, music gives my brain a break, lets it rest. Whether that has to do with brain lateralization and how music is processed compared to language, I don’t know (though I’ve always assumed that’s part of it).

To summarize, even though my communication disorder difficulties, both expressive and receptive, are mostly invisible these days, even to people who know me, they have not gone away. Nor has my orientation to language changed. It’s still the same as it was when I was a nonverbal toddler. I still process language best through the written word. I still understand the entire concept of language best through writing. In essence, the basics of what make me, me haven’t changed. And not just in the area of language (though language is the focus of this post). What has changed, is that since my diagnosis, I’ve learned a myriad of compensatory skills, acquired a whole lot of knowledge, about myself, and about the rest of the world, that enables me to “fit in” better, to function to a reasonable level, as long as the external stressors aren’t too high.

Of course, when the stress does exceed a certain point, those compensatory skills get stripped away. My brain reverts to the things it knows best, the ways it knows work, that take the least amount of energy. (Or, in other words, basic physiological survival 101, as I understand the science of such things.)

As a result, while I no longer have the aversion to speech I once had, I’m never going to be someone who is comfortable (or capable) of using speech as my only, or even primary method of interpersonal, real-time communication. I am never going to be someone who will ever feel comfortable without having some form of AAC to rely on in case of speech, or even language, failure. I’m never going to be someone who can believe that speech will ever be entirely reliable, or available to me. My brain just isn’t wired that way. My natural orientation to language is written. It’s how I think. It’s who I am. And to quote a good friend of mine, “[I’ve] never been good at being anyone but [my]self”.

References

Shah, A. (2019). Catatonia, breakdown, and shutdown in autism. Jessica Kingsley Publishers.

The Ableism Inherent in the Apparent Paradox of Intelligence and Autism

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I keep thinking about the apparent paradox of being an intelligent autistic person. Being intelligent means that I process information well. Being autistic means my brain likes to garble the input. It makes the information available harder to acquire, (often resulting in holes or gaps), and to use. It makes information processing harder than it is for neurotypical people.

Being intelligent means I can “use cognitive strategies to make up for some basic instincts that I don’t have” (Sinclair, 1992), and apply my intellect to recover or infer the bits of information that are missing or scrambled. It means that when I have the energy and the motivation, I can compensate for many of the things autism denies me. It means that, when I’m in an environment where people are willing (and able) to provide the information I’m missing, in both a nonjudgmental way, and in a manner in which I can understand it, I can learn that information, and apply it to my life. Autism means that I have less energy to apply that hard-won information in complex situations, or when I’m already tired or overtaxed. It means that I often don’t have the inclination to apply that information in contexts and situations that don’t mean anything to me, or are aversive or anathema to me.

Being intelligent and autistic at the same time means that strangers often perceive me as being neither as intelligent as I am, nor autistic.  It means I can be accused of being deliberately obstructive, willful, manipulative, and/or “difficult”, because of the other person (or people)’s ignorance and intolerance concerning diversity. It means I am often accused of knowing things I don’t know, and of not knowing things I already do know. I can, and have, been treated as both “too intelligent to be disabled” and “too disabled to be capable” according to society, to employers, to my social circle, to educators. The number of times I’ve had both my limitations and my strengths held against me, either at the same time, or separately, is immeasurable.

Ableism Regarding Hyperlexia, Speech, and Writing to Communicate

As an example, in just one area of my life where this kind of discrimination occurs, let me describe what happens when people discover my advanced written language skills. Because of my hyperlexia, I have a certain facility with written language. To most people this means I should have an equal facility with spoken language. The fact that I don’t infuriates, and frustrates them. This translates into them blaming me for the contradiction, and insisting that I really do have the capabilities they are assuming, because they would if they were me. (And they say autistics have difficulty with Theory of Mind!) And as much as my written language skills are supposedly valued, or admired, when it comes to using those skills to actually interact with people, I’ve gotten a very different message.

In my late teens and early 20’s, as part of my attempts to meet expectations that I be an independent adult, I started experimenting with different forms of AAC. I was looking for a method of interpersonal communication that was both meaningful to me, reliable, and also comfortable to use, as speech was none of those things. I should mention that without the encouragement of other adult autistic self-advocates, I never would’ve had the motivation or courage to even try this kind of engagement with an overpowerfully hostile NT world. Finding methods of AAC that worked for me led to a huge step towards my willingness to interact with the world, and therefore in my independence. However, because I had switched away from using speech most of the time, I experienced wide-spread, vehement objection to this form of self-empowerment and autonomy from NTs.

I can’t count the number of times over the years that I’ve been given the message, in numerous different ways, that writing was an inferior form of communication, to be relegated only to situations where speech wasn’t possible, or when the task was specifically designed for writing. (e.g., an academic assignment). I was routinely denigrated for wanting, and sometimes insisting on, using writing to communicate interactively. Sometimes I was additionally denigrated (and accused of lying, or just being incompetent), if I tried to explain writing was more workable for me due to my difficulties responding to unexpected questions and such in real time, due to my slow processing speed, and delayed processing issues. And God forbid I actually want disability accommodations to remedy those issues! Instead of being seen as an attempt to meet the other people halfway, or meet the expectations in a way that was actually possible for me, I was usually seen as being obstructionist and difficult!!

Even if I used a text-to speech device, I was routinely told (verbally and nonverbally) that I was taking too long, and that using writing was too slow, (even if my text-to-speech device spoke my thoughts, word by word, so my listener didn’t have to wait for the whole sentence, and then heard the whole sentence, once it was finished). I was also told that as an intelligent person, I shouldn’t really need AAC. That I was really just being rude, and trying to cause trouble, by “insisting on having things my own way.” In other words, I was routinely rejected, and dismissed for wanting to try and find a way to connect with other people that worked for me, just because it was nonstandard.

Because I have always had superficially adequate speech (though not voluntarily), there has been an added layer of disbelief when I try to explain just how much difficulty I’ve had with learning the meaning of the general concept of linguistic communication, never mind my difficulties with speech in particular. Most people are confounded by the concept that someone who is so good at writing, and who has become so articulate verbally, at least part of the time, can have ever possibly had developmental difficulties with the concept of language. The idea that they could be wrong typically results in a defensive reaction where they “justify” their perspective, and invalidate mine. They seem to have decided that since they are part of the majority, their outsider impressions, based sometimes on only a few moments, or a few interactions, “must be” more valid than my lived experience. As common (and frustrating, and infuriating) as this reaction is from strangers or acquaintances, it’s even more so from people who should know better, having theoretically known me the longest, (since I was a child, in some cases). Given that my communication struggles and limitations were much more pronounced when I was younger, one would think that once I gained official disability documentation, and was finally able to explain why I had such difficulties, “the penny would drop”, and these people would be the most understanding, but such is typically not the case.

Other Communication Disability Issues

As it turns out, there are also other lifelong difficulties I’ve had with linguistic communication that went entirely overlooked until adulthood. Those are my auditory processing and language processing disorders. The doctor who referred me to the speech-language pathologist who identified these disabilities (though an audiologist had to diagnose the CAPD), did so reluctantly, after I refused anti-anxiety medication during an (unrelated) appointment where she freaked out because I was nonverbal. (Incidentally, she never even stuck around to get the assessment report. She moved away  before it came through, without telling her regular patients. She also told her colleagues nothing I said was credible, due to my so-called “anxiety”. Needless to say, I found a new clinic.)

The SLP readily discovered there were much bigger issues involved than the presumed “anxiety” that drove the referral. It was immediately obvious to her that I had fundamental difficulties with both comprehension, and expressive abilities, among other things. She provided a lot of education, and a lot of support with regards to how to make linguistic communication more possible for me, why it was so difficult for me, and how it worked for nondisabled people. The audiologist she referred me to, who diagnosed my CAPD, also was very supportive, and had a number of suggestions on how to minimize the “signal to noise ratio” when I was listening to speech, and also what, and how to ask people to increase their support in this process.

As a result of the support I received from these two professionals, as well as that from my ANI friends, Disability Services at my university, and later, the doctor who later diagnosed my autism, I became a lot more willing to communicate with the world, and to interact with it in general. But that willingness came with some caveats: I greatly preferred AAC to communicate, and I decided I was no longer willing to do things that were overwhelming, or noxious for me (e.g., use speech in many situations, use the phone almost at all, endure sensory overloading environments without adaptation, or assistive technology, etc.). And apparently, these caveats were unacceptable to many people I encountered, as I ran into opposition, ridicule, and outright refusal to support me, on a regular basis. Insistence that I do things in a “normal” way, was typical. As I’ve mentioned in my “Societal Vocational Rejection” post, My Experiences with Societal Vocational Rejection. the vocational rehabilitation organizations were usually the worst. (Alternatively, other places, such as Student Employment Centre on campus, which I’d been told were knowledgeable about disability issues, gave me absolute blank stares when I approached them for help).

Increase in Abilities or Skills Doesn’t Make Them Natural

Unfortunately, the downside of my increased abilities, these days, especially in the communication (and especially speech) arena, is that people who meet me now don’t always believe that I have, or have had, the difficulties with communication that I have. They don’t realize the amount of cognitive effort and energy that it takes me to perform such apparently “easy” tasks. They see an intelligent, articulate, capable person, and have a hard time reconciling that with their idea of what an autistic person “should” be like. (And to be honest, sometimes I’ve forgotten, until recently, how much energy and effort I’m putting into compensatory strategies, because they’ve become second nature to such an extent, and only recently has there been more “interference” from other stresses in my life).

However, just because I’ve been able to learn how to manually “fill in the gaps” of things I never learned during the “typical” (NT) developmental stages, doesn’t mean that they are as automatic, or inherent as they are for people who followed the typical developmental trajectory. Quite the opposite, in fact. Many times, the cognitive effort, and physical energy it’s taken (and still takes) to compensate for the fact that speech and language (for example) aren’t my “native tongue” so to speak, means that I haven’t had the energy or cognitive resources available for linguistic communication when it’s needed. This was a particularly frequent occurrence early in adulthood, when the knowledge of, and capacity for, performing these concepts and tasks was new. And of course, there were many more demands on my time and energy at that point in my life as well.

That doesn’t even factor in the difficulties caused by impediments in reading social cues and nonverbal behaviour that define autism. And then, on top of all that, there is, of course, all of the related sensory integration dysfunction issues that I, and so many autistics experience, that affect everything with regards to information processing in the first place! The extra cognitive processing required, and the resultant fatigue, just to make sense of incoming sensory information (which is often scrambled, or incomplete) means that significant amounts of mental, physical, and emotional energy that in nondisabled people can be used for adaptive behaviour and intellectual pursuits, is redirected away from these things into basic survival and functioning.

This means that people who don’t understand autism, or don’t understand autism in intelligent people, have a tendency to treat people like me as if they are stupid, no matter how intelligent we are. Their “evidence” for this is simply that we can’t automatically, and instantaneously do the things they take for granted (like speech, and social interaction). Especially if our attention is directed to seemingly “higher order” tasks that come easier to us. Interestingly enough, people with other invisible disabilities often experience similar discrimination and lack of understanding due to the invisibility of their disability, and also the “moving target” nature of their difficulties.  

Ableism Regarding Intelligence and Cognitive Disability

This kind of ignorance, and willful disregard of how cognitive disability and intelligence can interact are what led to oppressive expectations and demands of me growing up, as well as when I was in university. It led to an experience that has been ubiquitous in my life, of infuriated people who, denying the possibility of disability, or lacking comprehension about how disability and intelligence can co-occur, harassed and berated me for not living up to their unrealistic standards and expectations of “someone of your intelligence”. Worse, this damaging behaviour was done (and often justified) under the guise of “helping” me.

Other people’s stereotypes about what a disabled person should look like have led to the greatest barriers I’ve ever encountered among the deluge of barriers I’ve encountered in my life. As an intelligent, cognitively disabled person, I’ve never fit any of those stereotypes. Even the very notion of an intelligent, cognitively disabled person makes far too many people’s minds explode, far too often. These stereotypes have been an issue for me for my entire life. As I got older, the damage from these stereotypes increased, as expectations of me progressively outstripped my capabilities. The damage, and the stereotypes persisted as I became an adult, even after I got my disability diagnoses. The only thing that changed, was that I developed both the community, and the practical strategies to help me confront these stereotypes, and challenge the people and systems holding them. This allowed me to (eventually) obtain the support services I needed.

It is only now, that society is finally starting to (slowly) realize that intelligent, cognitively disabled people exist (outside of the categories of acquired brain injury, or dementia). And most of that is because of the increased visibility of the neurodiversity movement and community. This means that far too many of us on the autism spectrum have gone our entire childhoods, and much of our adulthood being invalidated, and told that our very real, significant disabilities couldn’t possibly exist. Being told that our difficulties were our own fault. In reality, our difficulties are just the result of differences in brain wiring that occurred before we were born. Difficulties that have been magnified by a society that refused to acknowledge them and provide us strategies for managing them.

Being Respected and Accepted for Oneself Provides Great Motivation

So far, I’ve discussed how much of a hindrance my intelligence has been in getting my disability struggles recognized. However, much of the progress I’ve made, as an adult, in reconciling my differences with the demands of the world, has been because of my intelligence, and my ability to use cognitive strategies to adapt. Of course, doing so has required considerable motivation. And that motivation, has looked very different for me, as with many autistics, than NT’s expected it to, even insisted it must. But even with all the motivation in the world, the benefits still have to outweigh the cost. And simply put, social interaction usually doesn’t pass that test. The cost of social interaction is often exhaustion and mental fatigue. Sometimes, emotional overload too, (e.g., frustration, anger, trauma triggering, or new trauma), depending on the situation. So, if I’m going to risk those effects, there better be a damned good reason for me to make the effort! Superficial social acceptance, just for the sake of it, was never appealing (or even comprehensible) to me. That said, when someone makes it worth my while to interact with them, they can be very beneficial to my existence, and my well-being.

Although a lot of my drive to improve my life seems to have been an inherent part of my personality, a lot of my motivation to connect with, and engage in the world has come from finding, and developing, several key, positive relationships, starting in my late teens. These relationships were ones that respected who I already was, and provided me a “safe base” to explore from that I hadn’t had before. They gave me the safety and the motivation to use my intelligence to compensate for the things I don’t naturally “pick up”, or comprehend, that NTs do. For those tasks that I have found difficult to perform, or even to be willing to perform. I’ve been able to find “work arounds” for many of the things that don’t come naturally to me. I’ve been able to find reasons to be motivated, (or people who can help me find reasons) to learn the things I’ve needed to know in order to function in the world, that I wouldn’t ordinarily be motivated to learn. I’ve been able to find ways to modify those actions or skills that are necessary, but not enjoyable, so that they are meaningful and agreeable to me, and yet still fit inside some version of the “box” society insists upon. Even social relationships and verbal communication.

Some of the specific skills I’ve learned as a result of the discovery that other people could actually contribute to my quality of life, rather than detract from it, include many social skills such as diplomacy, tact, and conflict resolution. Other self-advocacy skills, including ordinary communication skills about how to get my point across better, and how to tailor my approach to the individual I’m interacting with (otherwise known, in general, as “knowing your audience”) are also in this category. I also learned more complicated things, such as how to get my needs met (physical and emotional), and how to meet the other person’s needs. This includes how to express that the other person is important to me, even though I may not demonstrate such things in a “typical” fashion. And, much to my surprise, I’m discovering that all that work I put into learning how to interact with my professors in a beneficial fashion, including how to advocate for my needs, and how to resolve conflict with them, has actually generalized to all of my relationships, and my social interaction skills in general. Anyone who knows how difficult generalization from one context to another is for autistics, can relate to my surprise at this revelation! It’s amazing what happens when people believe you when you tell them who you are, and respect all of you, even if it’s foreign to them.

References

Sinclair, J. (1992). Bridging the gaps: An inside out view of autism. In E. S. Mesibov. (Ed.), High-Functioning Individuals with Autism (pp. 294-302). Plenum Press.

Regression, Reversion, and Ableism

Photo by Ketut Subiyanto on Pexels.com

(* Yes, I realize that by some definitions the words ‘regression’ and ‘reversion’ are synonyms. However, ss you’ll see, the way I’m using them, there is a distinct difference. Psychology has a way of using the word ‘regression’ in a very derogatory, and ableist way. Especially with regards to autistics.)

I’ve been struggling recently with many executive functioning, language disorganization and certain comprehension issues, (perceptual, emotional, linguistic, and concepetual), as a result of overexertion due to a lack of support services. I realized at a certain point that they aren’t so much a demonstration of how much things fall apart when I’m stressed or exhausted, or etc. (though they are obviously that too), or of how I “fail to cope” or whatever one might want to call it. What they really demonstrate is just how well I’ve learned to compensate for my difficulties in the last 25 years, and how much I’m able to devote mental, physical, and emotional resources to compensating for my fundamental difficulties when my life isn’t insanely stressful, and when I’ve had enough downtime! 

What’s really happening lately isn’t so much that I’m losing skills or abilities or anything, so much as it is that I’m losing the ability to use compensatory strategies, and my fundamental difficulties, and underlying gaps in comprehension, and just plain differences are being revealed again, the way they haven’t in a long time.

Some ignorant, ableist people who aren’t part of my life, would typically at this point call this a regression, and attach all sorts of judgemental assumptions and meanings to that, (such as that it’s permanent, or is a result of the above mentioned “failure to cope”, or worse). But anyone who actually knows me, really knows me, and understands autism (not just pretends to), and how stress affects autistic functioning, would really see it as it is: a reversion to my basic abilities and comprehension level, to overlearned skills etc. Ones that don’t require so damned much energy to make sense of and make work. Resorting to what I know works, so that I can somehow, eventually, recharge enough to find the energy and resources to spend on more of the compensatory skills I’ve learned as an adult, post-autism diagnosis. 

Releatedly, I’ve been repeatedly frustrated in this last year about how, when it comes to having to deal with the NT world, nothing’s really changed in terms of the difficulties involved, even all these years later. I guess I was hoping all my advocacy work while I was at university would’ve “paid off” more, especially with the development of the whole neurodiversity movement (beyond what was just the autistic self-advocacy movement, back then), or that now that I’m not so insanely stressed, and have had enough time to recover from being that stressed, combined with all the practical knowledge I’ve gained during the ensuing years (including communication and people skills), that the NT world would be easier to deal with when I chose to re-engage with it. Turns out, that’s not the case. (Or… at least, in many ways isn’t. I’m probably too close to the situation to see how it has changed for the better, currently.)

And yet, somehow realizing that it’s only compensatory skills and such that I’ve been losing makes it easier to deal with the continued ignorance, inaccessibility, and ableism present in society. It still aggravates me that the NT world is just as difficult to deal with as it always was, even with more mental and emotional resources to deal with it. It still aggravates me that none of the problems have even really diminished, when it comes right down to it. It aggravates me even more that people seem to be even more ignorant about such things than they were when I was in university. But at the same time, I’m seeing more tolerance for differences in my interactions with service providers and customer service people. (And that’s totally confusing, as it seems to be completely contradictory!)

On the one hand, the increased ignorance (and sometimes outright stupidity) makes me not want to interact with the NT world, because I’ve carved out a good life for myself where I typically don’t have to deal with them, except on a very superficial level. The backsliding in disability accessibility many companies are engaging in, and blaming on this pandemic (as if that somehow makes it okay that they’re using a “one size fits all” approach to service) certainly doesn’t help. But on the other hand, it’s been made quite clear to me (by many people) that I now have enough experience, and knowledge about dealing productively with the challenges of autism and mental health struggles, that I have the ability to benefit other people’s lives by sharing what I’ve learned during this whole struggle called life as a disabled person, so… it would feel wrong not to do so when I know it could prevent other people from having to deal with some of the crap I’ve dealt with. Hmm… I guess it comes down to finding a comfortable balance, as so many other things in life do.