*Thanks to my current personal support worker who showed me the “Assume I Can” video currently going viral online for World Down Syndrome Day, (see video here) which provided me the inspiration I needed to finish this, as well as the inspiration for the formatting change that allowed me to finish it so quickly.
I’ve been thinking lately about a couple topics that are prominent in the disability community currently. 1. The “autism is/is not a disability” argument. 2. The “presume competence” movement/philosophy. And as I was writing my blog post on the first issue (forthcoming), it occurred to me that those autistics who insist on the blanket statement that “autism is never a disability” are denying (or rejecting) some important aspects of the second topic. I started to get really angry at those who insist that autism cannot ever be a disability. I got angry because I realized that their behaviour was another example of ableism and intolerance being inflicted on me by people who presumed to know better than I do what living in my body, with my brain is like. People who have never met me, and know nothing about me. I realized that these people are engaging in beliefs and behaviour that is the opposite of presuming competence.
My life is already far too full of this type of behaviour, this rejection of who I am and what I know about myself. I get it from both neurotypical people, and (sometimes) from other (nonautistic) disabled people. I don’t need it from other autistic people too.
Because I present as a highly intelligent, decidedly capable person, able to handle many of the vagaries life throws at me, many people assume that’s all there is to me, and to my life. They then presume to know me better than I know myself, and insist that they are better informed about what my abilities, what my limitations are. Even when they’ve just met me, or barely know me. Even when they only know one aspect of me. They negate all of the self-knowledge I’ve gained in the decades since my disability diagnoses, all of the problem-solving skills I’ve developed. They negate all of the self-care skills and acceptance of myself as someone with limitations that aren’t commonly valued by society, that I’ve gained. They negate all of the self-advocacy and negotiation skills I’ve learned through the years, and all of the effort, time, and energy I’ve put into personal development and growth as a person.
These people who insist that they know me better than I know myself usually condemn me for practicing self-advocacy, often for even believing in self-advocacy, because it looks differently than they think it “should”. They condemn me because, in their opinion, I “shouldn’t need help” with the task I’m asking for help in. They often believe that I shouldn’t need help with anything at all, because I’m “too intelligent”, or “too capable” to be disabled, or to have cognitive or energy limitations in that area, or with that specific task, or part of the task. (And don’t get me started on those people who don’t understand that many ordinary tasks are often filled with individual components of varying degrees of difficulty, which may or may not make the overall task difficult or impossible to carry out for neurodivergent people. People who’ve never heard of executive functioning, or movement disorders).
These people negate not only my individuality, but my competence, my intelligence, and the independence I do have, with their presumption. They disempower me by their very claims that they are “encouraging my independence” – by negating my need for help, for support,
This is a side of “presume competence” that many people overlook.
Presuming competence is sometimes narrowly construed as “presuming a nonspeaking person is capable of thinking, feeling, and learning to communicate in some kind of conventional fashion (whatever form of AAC they use)”. But it is so much more than that. Presuming competence in a broader sense means that, absent concrete (and accurate) evidence to the contrary, the assumption should be that the disabled person in question is capable of learning the same things (though often in a different way) that a nondisabled person is, and participating in society to the same level (if they choose) that a nondisabled person is automatically granted.
In addition to these more often considered aspects, presuming competence also needs to involve the presumption that a disabled person is capable of self-awareness, self-monitoring, and self-advocacy. That disabled people deserve to learn these things, that we have the same right to autonomy that nondisabled people have. Presuming competence needs to involve the assumption that disabled people are capable of learning and practicing these essential survival skills, even if the end result looks different than it would for a nondisabled person. Of course, this requires that the authority figures and peers surrounding these individuals respect them and their needs enough to help them learn to pay attention to these needs – all of them, even the “inconvenient” ones (by nondisabled definitions).
Here’s a list of some of the most prominent “do’s” and” don’t’s” I wish people would respect when dealing with me (and other people like me):
DO:
Do presume I know myself well enough to know when I need help.
Do presume I know myself well enough to know when I’ve reached the end of my energy resources.
Do accept my use of assistive technology, no matter how “different” or “odd” it looks to you.
Do accept my use of AAC (alternative and assistive communication) technology.
Do allow me to switch between speech and AAC use without comment or judgement.
Do presume that I know better than you do when, where, why and how I need help with a task.
Do presume I’m competent enough to learn these things if I don’t already know them.
Do teach me these skills to me (in a respectful manner) if I don’t know them.
Do provide me the experiences and the support I need to learn these new skills, so that they become reflexive.
Do encourage me to practice these skills often.
Do presume I’m capable enough to use these skills independently once I’ve practiced them enough for them to become reflexive.
Do trust me to know myself, and know when I need to use my self-advocacy skills once I’ve gained these skills. (Don’t assume you know better than I do. You don’t live in my body.)
Do trust that I’m good at looking after myself and using these survival skills, especially as I gain experience using them and with having my needs respected.
Do trust me to communicate my support needs once I’ve learned to. (Even if that’s with a distressed facial expression, or other agreed upon subtle nonverbal signal rather than words).
Do respect my intelligence, my self-development, my growth as a person.
Do trust me to be capable of growth.
DON’T:
Don’t tell me (especially repeatedly) that I can’t possibly know what I need, or that my limitations are different than experience tells me they are.
Don’t insist that my difficulties are, or aren’t, what you think they “must be” because of the way you experience the same task(s), or other nonautistic people (especially NT people) do.
Don’t tell me that I “must be” trying to manipulate you, or that I am “acting dependent”, or that I “don’t really need help” when I do ask for help with a task (especially specific help).
Don’t tell me I need a different kind of help than what I’ve asked for. (You don’t live in my body, so you don’t know what I need, even if you have experience with other people with my diagnosis).
Don’t tell me that if I know the specific help I need that I can’t need that help. (Knowing what to do and knowing how to do it are two different things.)
Don’t tell me that I could or should “do it myself”.
Don’t tell me I’m “being obstructionist” if I continue to insist I can’t do a task on my own, or that it will be too hard to do alone. (The consequences in terms of loss of functioning in other areas – or all areas – afterwards may be harmful to my health).
Don’t say the above invalidating phrases when the difficulties involved are typical for autism. (Really, really just don’t!)
If you’re not aware enough of the types of difficulties autistic people have, learn. Or find employment in another field. (If you’re a family member, rather than a service provider, and choose not to learn, – or think it’s “too hard” to – then keep your judgemental opinions to yourself).
Don’t insist “but you could do this before”, and use it as an excuse for why you won’t help with a task. The nature of autism, and the nature of invisible disabilities in general is that our abilities fluctuate (sometimes drastically) from one moment to another, one activity to another, and one environment to another.
Don’t see me as only a case study, or a burden, or an obligation. I’m a real person, just like you.
Don’t see me as a damaged version of you (or of NTs/nondisabled people in general). I’m a whole person, just as you are.
Don’t confuse intelligence with executive functioning, or motor planning, or coordination.
Don’t confuse intelligence with linguistic skill or fluency.
Don’t confuse intelligence, or linguistic ability with ability to read nonverbal behaviour and interpret social cues.
Don’t question my need for AAC or assistive technology in general. If I’m using it, then I’ve decided it will help me live my life.
Don’t belittle my need for assistive technology (AAC or otherwise), or try to “wean me off of it”.
Don’t criticize me if I need to remove myself from an overwhelming activity.
Don’t prevent me from leaving an overwhelming environment for a safer one.
Don’t criticize me if I need to cancel participation in an optional (or social) activity because I’m too overloaded or burnt out, and have decided to prioritize my own health instead.
In short: Respect me for who I am, and allow me to make my own (age appropriate) decisions about my own life. Don’t insist that I pretend (consciously or unconsciously) I can function at a nondisabled level all the time. I’m not a nondisabled person, and should not be expected to be one.
I’ve decided to add a page to my website where I can post my favourite quotations related to diversity. I have called it “Wisdom from Diversity”, since many of the quotes have become an important part of my philosophy of life, and come from advocates and activists who resist the ableist, sexist, racist, and otherwise bigoted messages society likes to endorse so often against minority populations. As many of us do, I hope that as we join our voices (physical and metaphorical) together, our message about the value to be found in embracing diversity and interdependence will become the mainstream approach of society, rather than the exaggerated hyper-independence of capitalism that currently prevails in so many places.
Most of the quotes on this new page will relate to disability, since this is primarily a disability blog. Some, however, will relate to other types of diversity, or to many kinds at once.
I will occasionally update the page as life provides me with new ones to add.
More detail about the intentions of the page are discussed in the preamble at the top of that page itself, before I start listing the quotes.
For those who are interested, I’ve just posted a list of definitions of commonly used terminology in the autism community as a (.pdf ) on my “Longer, Less Personal Writing” page of my website. It includes short definitions of general terminology, related conditions, important professionals an autistic person (and their family/caregivers) may encounter, and common mental health conditions experienced by autistic people.
I’ve noticed there seems to be a need for such basic information, so I created a document with it all in one place. I hope it will facilitate easier conversations among those of us in the autism community, both veterans and newbies. It’s not meant to be all-inclusive necessarily (is that even possible?), but more of a starting point. A “welcome to the autism community” resource for the newly diagnosed, and an easy go-to for those with more knowledge looking for the information all in one place. 🙂.
I’ve tried to make the language disability/neurodiversity friendly, but at the same time make it easy to find the medical terminology most commonly used. (Which, by the way, is really, really hard, given how ableist medical language is!!!) I’m sure I messed up in a few places. Please excuse me if I did. And if you have any good suggestions for changing any of those errors, please let me know and I’ll fix them as soon as energy, executive functioning and language processing allows! 😀💗
A friend convinced me earlier this year to take the next step in my advocacy work, and in getting my experiences with a mixed expressive-receptive language disorder out there. In the email she sent to a colleague, she introduced me as “growing up as non-speaking”, which, technically isn’t correct, but also isn’t entirely incorrect. 🤔. The more I think about it, the more describing a person as either speaking or nonspeaking, as if those are the only options, seems like a false dichotomy that doesn’t fit the experience of many people on the spectrum (and maybe some non-autistics, especially those with developmental communication difficulties). It seems to be something similar to the binary options society presents us, on so many levels, that don’t match up with people’s lived experiences. Gender and sexuality are the two that are currently getting the most attention, but there are so many more, as discussed in the book Life Isn’t Binary, by Meg-John Barker, and Alex Iantaffi (which I read relatively recently). (Barker, 2019)
While I was growing up, the assumption, the demand, was that I “must be” Neurotypical (though that word didn’t exist yet, so the one used was “normal”). I wasn’t diagnosed with any kind of communication disorder until I was 19. And the only reason that happened was because I freaked out the new family doctor that I had at that time, by being nonverbal[1] with her (using paper and pen), and refusing anti-anxiety medication. She referred me to a speech pathologist, which resulted in a mixed-expressive/receptive communication disorder diagnosis, and a referral to an audiologist for an auditory processing disorder evaluation. That referral promptly resulted in a diagnosis of Central Auditory Processing Disorder, and a bunch of useful instructions by both professionals on how to manage CAPD. (We discovered that, on a good day, I lost 50% of what I heard. On a bad day, all bets were off! On the worst days, speech was nothing more than meaningless noise to me.) It took two more years of fighting to get a proper autism assessment, (which resulted in my autism diagnosis[2]), rather than a dismissal of “it’s only anxiety; if you’d just try/try harder, you’d be perfectly fine”.
Previous attempts, by me, as a teen to suggest that my difficulties with speech, language, and linguistic communication in general, (and many other impossible-to-achieve developmental expectations), might possibly be related to an organic disability were met with outright rejection. They were also met with claims that I was making it up, exaggerating, or otherwise “faking it”, for one reason or another. In their opinion, I was “obviously too intelligent” to have any sort of significant disability. I just “wasn’t trying hard enough” or “didn’t want to learn.” I didn’t fit into either of the known categories for disability back then: “physically disabled” or “mentally retarded.” Therefore, I “must be normal,” was the refrain.
But back to the beginning.
First, the key here is that I’m defining “speaking” as “communicating orally with words in a meaningful manner”. Or “using one’s voice to employ words in a communicative manner”.
This is important, because while I had superficially adequate speech from a young (though somewhat delayed) age, I didn’t use it to communicate until a few months before legal adulthood (age 18).
Expressive language (via writing) came a little earlier, (albeit essentially by accident). If I’d had a choice then, expressive speech may never have come to me. I may never have voluntarily made the choice to develop it, as speech had always been an aversive experience for me. But I did not have that choice then, any more than I had when I was 5 and desperately wanted to give up on the use of speech as futile and ineffective. So, under intense duress, eventually, I did begin to develop useful communicative speech as an adult. A process which took me several years to manage.
Basic Facts About My Language Development
As a toddler, I was a nonverbal, hyperlexic[3] child. Which means that I learned to read about a year before I began to speak. And in that era, the idea of a hyperlexic, nonverbal toddler wasn’t on anyone’s radar! It was “here there be dragons”[4] territory of any “map” there might have been about what child development was supposed to look like!
Similarly, the concept that, as a young child, my language comprehension could far exceed my expressive capability, also escaped everyone in my environment. Having people assume my comprehension was equal to my expressive capability when my expressive capability was minimal, was exceedingly frustrating!
(These days, it’s fairly common knowledge that comprehension often exceeds expression for anyone learning a new language, no matter what age, but back then it wasn’t).
Given how, even these days, most people equate intelligence (and therefore “normality”, whatever that is,) with linguistic capability, and especially how they rate writing as “harder” to learn that speech, the undisputed conclusion was that I was “too obviously intelligent to have any significant disability”.
This means that my difficulties were, at most, assumed to be a result of “immaturity” due to medical issues, and that I’d just “grow out of” them.
The only reason I began to speak at all, was because mom kept pressuring me to repeat her words on command. I have a very specific memory of giving in, in the hope that she’d shut up and stop pestering me. It didn’t work out that way. My first word only encouraged her to demand more.
When I did begin speaking, the feedback was almost universally critical and dismissive, no matter what I said, or how I said it.
Which is why I was convinced by the time I was 5 that speech was futile and ineffective. The only thing that kept me from giving up on it entirely was my fear, and my conviction, that the backlash from my parents, should I do so, would’ve been lethal. (Literally, lethal). And even though I was suicidal at that age, my will to live was apparently stronger.
Before you get any wild ideas about why a 5-year-old is convinced they will be killed if they stop speaking, let me explain: Even though I was young, I was a product of my society, even by that age. I had been very thoroughly conditioned into behaving “normally” and into knowing that anything that was “not normal” was extremely unacceptable. And not using speech was considered the ultimate in “not normal.”
While not making any excuses for the adults in my life, at the same time, it wasn’t entirely their fault: Society’s ableism and intolerance towards anyone who was “different”, back then was so much stronger than it is today. Even with the rampant divisiveness and vociferousness of those people who, in 2023, want to revoke the progress we have made as a society towards equality and acceptance of all people.
In addition to the auditory processing disorder mentioned above, as a young child (and throughout my life, including as an adult), I experience(d) a couple of different movement disorders that interfere(d) with my ability to use my vocal muscles with the same ease as other people. One was diagnosed as an adult, the other has yet to be diagnosed, other than being “of neurological origin”.
The movement disorder we do have a name for is apraxia of speech. The other, while not being officially diagnosed, has very few known possibilities for explanation. To date, the best explanation anyone can postulate is some form of focal dystonia (or two), possibly combined with my sensory integration/sensory processing difficulties (which were officially diagnosed about the same time I had my autism diagnosed.)
The undiagnosed movement disorder involves painful, unpredictable vocal spasms, that often mess with my breathing, dating back to at least toddlerhood. They caused my voice to turn on and off unpredictably, assuming it turned on at all.
In early adulthood, these symptoms would exacerbate for some still unknown reason, and interfere with my ability to swallow properly, resulting in unexpected bouts of choking and even further loss of coordination of my vocal tract (which was already problematic due to the apraxia of speech).
By the time I talked to my first autism specialist about it (who was also an MD), I had already discovered that over-the-counter medication handles the pain sufficiently, and the AAC I was already using handled the functional difficulties well enough at the time as to make the complicated diagnostic process unappealing and unnecessary. Not much has changed since then. Sometimes I have experienced improvement, and other times flare ups.
Growing up, the only time that anyone “officially” acknowledged my difficulties speaking was during kindergarten, when I received speech therapy for pronunciation difficulties. Once those were mediated to the adult’s satisfaction, however, everyone went back to assuming I didn’t have any communicative difficulties.
To be fair, I have it on professional authority that the understanding of communication disorders, even by professionals in the field, was still “in the Dark Ages” back then. Only two possibilities were recognized in children at that time:
Pronunciation difficulties;
A complete failure to develop language.
As a result of the above-mentioned facts, I struggled along with superficially adequate speech, without ever using it to communicate. It drove my mother up the wall. Apparently, I was very good at expressing what I didn’t like, but utterly silent on the things I did like or prefer. Into adulthood.
Any concerns mom raised with the school resulted in condemnation of her parenting and nothing else. And arguing with them wasn’t within her abilities.
As a teen, a classmate unwittingly showed me that written language could be used expressively, and once I realized that, the “floodgates opened”. Turns out I had a lot to say. Mostly about my struggles with (what I now know to be) ableism, and the resultant mental health difficulties. Even if I was the only one who saw what I wrote. At least until I eventually got the courage up to share it with certain, select, people (both classmates and teachers).
I still didn’t have any real ability to discuss what I’d written with anyone though. That would take another few years, and a lot of pressure from people who processed language auditorily. (a.k.a. most people).
So, to recap, I was virtually an adult before I even began to have any useful expressive oral communication skills. Even though if you asked almost anyone who knew me growing up, they’d say I didn’t have any trouble communicating orally with them.
Development Of Useful Linguistic Communication Skills
It wasn’t until I gave up on speech as my main method of communication, and began officially experimenting with different forms of AAC, at age 18 or 19, that I discovered a reliable, meaningful, and effective method of linguistic communication. More importantly, with the community on ANI-L, I discovered I wanted to communicate with certain people. I had enough in common with these people, both those who were diagnosed autistic, and those seeking a diagnosis, (and the occasional parent who subscribed to our positive beliefs about autism, and our inherent worth as people), that it was worth my while to engage in conversation with them (mostly email, though eventually in person, once we created Autreat[5]).
The benefit finally outweighed the cost, and the difficulty.
In contrast, growing up, linguistic communication generally, and speech specifically, felt like a torture device designed to destroy me. One of many designed by the adults around me. Speech and interactive language were something that had no inherent benefit or positive meaning for me. They were just more items in the list of demands and impossible expectations, imposed by adults, that I couldn’t comprehend, much less perform. And even once I developed the ability to express how difficult and pointless these tasks were for me, no one believed me. In fact, they refused to believe me. Instead, they invalidated my experience, and my feelings; they insisted the problem was my attitude, not my ability.
I read a book a while ago that described the basic building blocks a child needs in order to begin to use speech and language voluntarily. It made me realize how few of them (virtually none) existed in my world as a child. Not in the external environment, and not within my own brain. That book said that speech was supposed to be seen as fun and rewarding by the child. My experience was exactly the opposite. It was entirely negative. I participated in using speech only under duress, under coercion. Under what felt like the literal threat of death if I didn’t learn to use it, and use it “properly” as defined by the adults around me (which, by the way, was a permanently elusive and imprecise target).
It took me more than two decades of using AAC as my primary method of communication before I could even consider using speech instead of AAC in environments I wasn’t completely comfortable in. It took me longer than that before I had any courage to experiment with doing so, and longer still before I started considering doing it on any sort of regular basis. Of course, considering is much different from doing. Most of the time, I’ve discovered, it’s still much more effective, and easier, for me to use AAC in unfamiliar or stressful situations, so I do. But I no longer rule out the possibility of (at least partial) use of speech, especially because people are much less intolerant of a mixed-methods approach than they used to be.
Experiences of Ableism Regarding the Use of AAC.
The primary reason it took me so long to even consider not using AAC, was because most people were extremely intolerant of my using AAC once they learned I was physically capable of speech. Their oppressive, obnoxious attitude about how I “needed to” use speech, and that anything else wasn’t acceptable, made it impossible for me to feel comfortable communicating with them in any way. This meant that any amount of required communication on my part, in these situations, was done through AAC, or through intermediaries. Sometimes intermediaries were very much necessary, though not typically well-received. At worst, at the most tyrannical, such attitudes nearly resulted in my being unable to finish my honors degree at university, due to the academic discrimination and harassment I experienced from those “teaching”[6] one of my courses. And for no other reason than “we don’t know how to accommodate you, so we’re not going to.” Direct quote. (Citation/reference purposely omitted).
Intolerant, ableist behaviours I’ve been subjected to more recently, (in the last few years), have led me to re-examine my relationships to speech, language, and communication. As a result of this introspection, (see my earlier blog post Writing is My First Language), I’ve finally stopped pretending that I’m ever going to be a person who can rely entirely on speech. It’s not how I think, it’s not how I relate to language, and it’s not who I am. I relate best to language in its written form. I always have. Therefore, I will always need at least some degree of AAC (usually text-to-speech, or email) in order to communicate with people comfortably and effectively. That’s something that will never change. Nor does it need to. Allowing people to influence me into thinking it does need to change is a form of internalized ableism (and therefore self-harm) I don’t need to inflict upon myself.
Contrary to popular belief, using AAC (full-time or part-time) is not “giving up”; it’s not “being obstructionist” or “refusing to cooperate/conform”, or any of the other ableist beliefs nondisabled people have. It is in fact, the opposite. It’s choosing to participate in society, in the world, in life. Participating in a way that works for me, rather than in a way that harms me. Using AAC when it is the best answer for me, is participating in life in way that is sustainable, productive, and healthy. Specifically, using AAC when needed enables me to participate in a way that preserves my mental health, as well as my ability to function cognitively, and physically, in other necessary aspects of my life, in the best possible way, whenever I need to.
Using speech when I need AAC is the opposite of these things.
My continued need for AAC surprises a lot of people. More than that, it (usually) offends them. It violates their unconscious assumptions about people and speech, about people and language. More specifically, it violates the beliefs underlying those assumptions. Beliefs about speech, language, and intelligence; about the “innateness” of spoken language, and about the very nature of what makes a person. This makes them feel threatened. So, in order to keep their distorted worldview intact (to keep from having to strain their brains and recognize that human beings are as diverse as any other biological species), they choose to reject the evidence in front of them. They reject my reality. In so doing, they reject me as a person (though they’ll deny that if confronted).
Other people aren’t so intolerant. They eventually accept my need to use AAC part time, but they often struggle to get there. Some struggle more than others. On rare occasions, I encounter a person who has no difficulty accepting the concept. These people I value greatly. Most of those who struggle initially, but come around eventually, seem to do so out of a desire to accept me for who I am. They ultimately realize that it’s a part of who I am, and accepting me means accepting all the ways I communicate, including AAC.
Initially, however, like most people, these people let their own biases about the supposed ease and “naturalness” of speech get in the way of their ability to believe me when I describe my lived experience. They also (maybe unconsciously) have a misperception that intelligence is “supposed to” negate the possibility of difficulty with speech and/or language, even if they (consciously) know better. Or they see how articulate I can be when I’m comfortable, and rested, when I’m able to make all the mechanics work out (cognitively and physically), and they think that’s a better reflection of my “true” abilities, than what I tell them about my internal experience of the process. (As if, somehow, my own perceptions are inherently flawed, and not to ever be trusted. [7]) They initially believe that they can “fix” the “problem”, or that I should be able to, if they provide enough encouragement. That I should want to fix it.
Apparently, even people who typically know better than to make assumptions based upon appearances, get so dazzled by how articulate I can be when linguistic communication works for me, (or I have a particular need to force it to) that they don’t recognize how much effort it takes me. They focus on how fluent I’ve become, how advanced my self-advocacy skills are, my emotional intelligence (e.g., my ability for diplomacy and tact, even in emotionally charged situations), and ignore everything else. They let themselves be deceived by my skills (and sometimes their admiration for my skills), and erroneously equate those skills with ease of use. Even when they know better, they mistake well-honed compensatory skills for automatic, instinctual behaviour. Especially if I have more skills in a certain area than they do. They fail to exhibit Theory of Mind, if you will, and assume that just because, once learned, such skills are easy for them to use, they are like that for me as well. They forget that, being autistic, many skills NTs take for granted, or that become automatic once learned, remain fixed at a manual, energy draining level, for me.
This preference most people show for misattribution is especially true when applied to their admiration of my ability and skill with written language. Because reading and writing are so much more difficult for them than spoken/auditory language, they assume (and often insist) that since my written language skills are so advanced, my spoken language skills must at least be on par with my written skills, if not even greater. And predictably, when they are faced with their error, they often get quite angry with me, as if it’s my fault they’re wrong. They often behave as if I am deliberately trying to make their lives difficult by requiring the support of written language to interact in certain circumstances. They refuse to understand how exhausting, complicated, and sometimes just plain difficult, using speech can be for me (both expressively and receptively), when it works at all. They also refuse to believe or accept that sometimes it just doesn’t work for me at all.
Just because I’m good (even exceptionally good, according to many people) at written language, doesn’t mean that language as a whole isn’t still exhausting for me to use, and understand, most of the time. It doesn’t mean I can get the motor commands necessary for speech to work sufficiently, fast enough, to engage in a real time oral conversation. This is especially true when a response is needed spontaneously, or in an unfamiliar situation. My aptitude with writing doesn’t mean that I can get my thoughts to form rapidly enough to initiate any of the above-mentioned components of speech in the first place, or maintain them at the speed, or for the length of time the person demanding them wants me to. My ability and skill with written language doesn’t mean I don’t need to use a lot of compensatory skills to get by in the world, or that those compensatory skills don’t take a lot of energy out of me that nondisabled people don’t need to use. Even if those compensatory skills have become routine enough that I often forget I’m using them until they fail me.
As capable and proficient as I appear to an outsider, on the inside, my brain is working overtime, scrambling to make sense of the world and figure out how to interact with it. That’s the nature of invisible disabilities: Even though it’s not necessarily apparent to other people, on a daily basis, I continue to deal with many difficulties (including ableism) nondisabled people don’t have to worry about. The short list of official diagnoses includes: a language processing disorder; an auditory processing disorder; dyspraxia/apraxia; executive functioning difficulties that can affect my ability to keep my thoughts, or my body organized; and other physical and mental conditions, including autism. As a result, I still have days, or moments, where basic concepts NTs take for granted, elude me. Some more examples seem useful here. Though I could create an extensive list if I wanted to, here are a few of the most common: “What are words for?” “What are people for?” “What are ‘holidays’, and why are they considered important?” Or on a more basic level: “What’s that blob of color in front of me?” “What was the meaning of that noise?” “How do I navigate this space without walking into the furniture or the walls?”
Summary
So… now that I’ve (hopefully) enlightened you as to my thought process (and experiences), my confusion as to how to answer the question of whether I grew up speaking or nonspeaking, and my dissatisfaction with the either/or nature of the question, is perhaps more comprehensible. The answer is “both” and “neither”. I may have figured out the mechanics of speech sufficiently as a child and teen so as not to be “obviously disabled”, but at the same time, that has as much to do with society’s ignorance, and utter denial, as it does any actual ability on my part.
I don’t mean to discount the ability I did have. However, without the degree of intelligence I had available to me, without the ability to “use cognitive strategies to make up for basic instincts I don’t have” (Sinclair, 1992), the outcome would’ve been very different. And my motivation for developing the speech and language I did acquire was very different from that of most children. I was acting purely on survival instinct, not out of any sort of voluntary social impulse, or functional, higher-order problem-solving orientation. Basic elements of language’s function didn’t enter my comprehension until I was in my teens, and in many cases, not until adulthood. Some of it not until well into adulthood. And I know I’m not alone in this. Especially with what I’ve recently discovered about “gestalt language processing”, and how common it is among autistic and hyperlexic people.
Which leads me back to the question I started with: Is categorizing people as speaking vs. nonspeaking an arbitrary form of binary thinking that has little to do with people’s actual lived experiences? I’m starting to think “yes”.
[1] I’m going to use the terms “nonverbal” and “nonspeaking” as near synonyms, though I know some autistics have started using the terms more precisely, with separate meanings. I say “near synonyms”, as there will be times that I use one over the other intentionally, which I hope will be obvious through context. Otherwise, my brain hasn’t yet sorted out the recent shift in terminology, which seems to be still in flux, so I use them interchangeably. I hope this doesn’t confuse or offend anyone.
[2] Contextual note: Asperger’s Syndrome had only entered the DSM a few years before I was diagnosed with autism, which means that very few people yet understood that autism could occur in functional, intelligent people, and the debate was still raging as to the nature of the relationship between AS and autism.
[4] “Here there be dragons”, “Here be dragons”, or more often, “Here be lions”, (or an image of wild animals), was a common designation on medieval maps to designate unexplored territory, where all sorts of unknown dangers lurked. (See Wikipedia for more on the subject.)
[6] I use the word “teaching” in quotations because I later found out that I wasn’t the only student who was treated unfairly; I was just the only one who wasn’t intimidated into silence.
[7] I do understand that human psychology being what it is, sometimes an outside person can be more objective about an individual’s abilities than the individual themselves. On the other hand, sometimes an individual is a much more accurate judge of their own abilities than an outsider who only knows them in a circumscribed, specific context, or hasn’t known them long. Especially if the individual continues to express the same perspective through a prolonged period of personal development and introspection.
References
Barker, M.-J., & Iantaffi, A. (2019). Life Isn’t Binary. Jessica Kingsley Publishers.
Sinclair, J. (1992). Bridging the gaps: An inside out view of autism. In E. Schopler, & G. Mesibov (Eds.), High-Functioning Individuals with Autism (pp. 294-302). Plenum Press.
Well, this came together much faster than I expected! Almost as if it were a book review instead of a regular blog post! (But it’s not, I promise! 😀). (Though today was still as much of a slog as I usually experience in terms of editing, even if it did last only the one day instead of the usual several).
With any luck, I’ll now be able to get on to the next one, and maybe even have it for you within the timeline I suggested I might have the one for you! (No bets, but the possiblity now exists.)
Anyways, onwards:
Let’s start with one overall truth: Society is ableist. Intrinsically so. It doesn’t matter what degree or type of disability one lives with, a disabled person will experience a significant amount of ableism during their life.
Another truth: Many disabled people will internalize this ableism because they have no other choice, due to the ubiquitous and intrinsic nature of ableism in our society. They are not exposed to enough (or any) positive messages about disability, unless they (usually) deliberately seek them out.
Even with supportive (typically nondisabled) family members, the message is everywhere: Disabled people are “less than,” “incapable,” “a burden.” Unless, of course, they’re portrayed as an “inspiration” for doing what nondisabled people take for granted (a.k.a. inspiration porn), and just living their lives. Most disabled people who are acknowledged as successful in their lives are typically portrayed as “supercrips” and as having “overcome” their disabilities, even if their disability is permanent.
Replacing this ableism with healthier viewpoints is hard. It requires support from other people. A lot of support from other people. People who believe in disability rights, in disability pride, in the social model of disability these things are based in. In advocacy, and often activism. It requires support from people who experience similar disabilities to yours; support from people with other disabilities who experience similar types of oppression (and different types); From nondisabled allies and advocates who can fight for you when you’re too beaten down to do it yourself, or when some bigoted ass won’t listen to a disabled person. And sometimes from nondisabled allies whose very presence confirms that not all nondisabled people are ableist, and you’re not alone in your fight for respect and basic human decency.
The type of ableism a disabled person experiences will differ based on many factors, including the type of disability and the severity[1] of the disability. The extent of the ableism may also differ. But the existence of ableism in a disabled person’s life is a given.
And no matter what it looks like, whether the ableism manifests most strongly as pity, or as inspiration porn, (or anything in between), it is still condescending, condemning, and harmful. It is insulting and invalidating. Whether ableism manifests in expectations that are too low, or too high — in too few supports or too many (too restrictive an environment, one that fails to presume competence), the message communicated by society is the same. It’s a refusal to respect disabled people as worthwhile beings. It is a refusal to allow disabled people the right to participate in, and contribute to society the way they want (or need) to. This message, and all the ways it manifests itself, is disempowering and destructive.
Sometimes as advocates, (whether for ourselves, or for other people) we get so caught up in our own struggles, our own difficulties being accepted for who we are in a society that would really prefer we ceased to exist, that we (sometimes unwittingly) participate in divisive and ableist behaviour ourselves. We claim that only our kind and degree of disability is important, or that it is somehow “more important” than other kinds, or degrees. We do this, often as a sheer survival skill, a primal instinct, based upon our fear of, or our experience of, being denied (or losing) the support services we need in order to have any kind of quality of life, and sometimes to survive at all.
In doing so, we are doing exactly what nondisabled society, especially the governments in power, want us to do. We fall right into the trap they have designed for us. We end up fighting with each other, instead of for each other. “Divide and conquer” is a sound tactical strategy for a reason. Whether in war, politics, or everyday relationships between people. (Have you ever seen a kid play one parent against another when they want something? It’s the same strategy).
We succumb to a “survival of the fittest” mentality, which, by definition, is ableist. (Except, in this case, the “fittest” are often those scream the loudest that they are the most “in need” of services because they are, essentially, the weakest.) I’m not trying to deny that limited funding is a perpetual problem, or that no decision a government makes will make everyone happy in a society. Both of these things are true. However, the politicians making the decisions are usually able-bodied people, making decisions that prioritize able-bodied (often white, cisgender male) values, not the values or priorities of disabled people. Additionally, government decisions (contrary to official claims) are usually made by politicians trying to win popularity contests so that they can keep their jobs (i.e., get re-elected), and continue to make the exorbitant salaries politicians are paid. And that means listening to the segment of the population who appears at any given moment, to have the most political “pull” — usually defined as “who screams the loudest, and can make the most trouble if they don’t get their way.” Otherwise known as “the squeaky wheel gets the grease.”
In this environment, this philosophy of scarcity, as disabled people, (and parents/caregivers of disabled people, especially minors), we are often left in survival mode, fighting for what paltry services are available, (at least in theory). We are unable to see beyond the immediate moment, to the bigger picture: Fighting for a change of societal attitude that will make accommodations, support, and equal treatment more common (and therefore less expensive). We scream that those with the highest support needs are “the most deserving” of services, and leave those with lower support needs to their own devices. We deem those with less extreme needs, or less obvious ones, as “unworthy”, no matter how disabling their difficulties are, or how much those difficulties interfere with one’s ability to function in everyday life.
Or, conversely, we scream that those with low support needs need better support, and “are more deserving” because it’s less expensive, or because we have been neglected for so much longer, or because the cost to our mental health from having to force ourselves to conform to nondisabled standards is so much more important than anything else, or anyone else’s needs.
Sometimes we scream about how adults need more services, that children are receiving more than their “fair share” of it. Or the reverse. Parents of young disabled children often get upset when adults start demanding services, because parents fear services will be taken away from their children in order to provide them to adults. And G-d forbid a child traverses the border between the two and loses the services they were previously eligible for! (That’s a whole separate nightmare in itself! The ableist message that disabled people aren’t worthy is the most clear there.)
When we make these arguments, we are claiming (intentionally or not) that the others, who “aren’t us”, even if we share a diagnosis, “don’t matter,” or are “undeserving.” Either way, we’ve divided ourselves as a community, and waste time, energy, and mental health on infighting[2] rather than the equality and acceptance we are all claiming to fight for.
I don’t mean to disregard or overlook those awesome people and organizations and communities that are working to cross boundaries and create unity and community; those who work to increase the acceptance and naturalness of diversity among all humans. The disability rights movement wouldn’t be what it is without them. The neurodiversity movement wouldn’t exist at all, without the groundwork laid by the larger disability rights movement. Unfortunately, far too many people don’t feel welcome in various disability rights organizations because of the ableism and exclusion, even ostracization they have experienced within them. And that’s just so … wrong, on so many levels, in my opinion: That people who already experience so much oppression and discrimination against who they are, in the wider world, also experience it in settings that are supposed to be designed to be welcoming and understanding.
Of particular concern to me recently is the divisiveness and infighting that has been going on in the autism community of late. It really disappoints and aggravates me. I find it so discouraging.
I’m not sure if this is a typical thing in other disability groups or not, but in autism circles lately, there appears to be a war going on between those with “high support needs” and those with “low support needs”. The war is apparently regarding “who is more deserving of support services”, and the funding that goes with them. Some people think changing the terminology used to describe where a person is on the autism spectrum will somehow help. Creating, or more precisely, pretending to create, new categories of autism, (by renaming old ones, or being finicky with the wording in supposed criteria, which is all the proposed “profound autism” category would do), isn’t going to change anything. It only changes the outward appearance of something that’s existed for centuries, perhaps even millennia, and has been officially recognized by western society for the last several decades. (The phrase “putting makeup on a pig” comes to mind).
And in all the fuss over terminology and categorization, it appears to me that those in the middle are being left out.
Statistically, if anyone were to bother to count, and if everyone on the spectrum had equal influence, I’d guess that the majority of autistic people fall into the middle of the spectrum. Nowhere in all these arguments do I hear any discussion about those with moderate support needs. Or what about those whose support needs vary, sometimes wildly, from day to day, or week to week, or maybe month to month, depending on stress and fatigue levels??!! Or whose needs vary, sometimes wildly, from task to task?? What about the intelligent, college educated autistic who can’t manage to keep themselves fed, or keep up with housework, and who may or may not be able to hold a job or have a career? Both exist. What about the high school graduate who can’t handle college because of the increased executive functioning and independent living demands? What about the adult who needs 24-hour in-home support, but who can hold down a job or a career if given the right environment? Where do their needs matter in the scheme of things? Who’s arguing for their rights? For their importance? Their right to exist and participate in society? I’m not hearing any of this in the arguments over whose autistic needs “matter most,” and “who deserves support.”
For that matter, did the term, or even the concept of “moderate support needs” even exist before I typed it?! Why are we dividing the spectrum in two at all, when we all acknowledge it’s a spectrum, not a binary (or unitary) state?
I was reflecting on all of this recently, and here’s where my thoughts took me:
To state what is now known to be obvious, (at least to anyone who knows anything about autism). autism looks very different depending on the specific individual’s strengths and limitations.
To have one’s strengths or limitations held against you, is not only incredibly invalidating, but also incredibly disempowering, and extremely harmful. It’s even more so when both are held against you at the same time! I know this from personal experience.
When this type of discrimination, of abuse, even, prevents you from being able to meet the demands of the people around you, and of society in general, and then seeing people with more severe disabilities (more limited ability to meet nondisabled expectations of functioning) receiving all the accommodations they need in order to acquire and maintain employment, or education, can really “rub salt in the wound”. Especially when it appears that society is apparently “bending over backwards” to make employment (true employment, not the pretend kind so often offered to disabled people) a reality for this segment of society.
It raises the question “Why can’t I receive that kind of support? That kind of acceptance?” “Why am I not important enough?” “I can do so many more of the things they can do, but I’m not allowed access to that aspect of society, and they are.” “It’s not fair/It makes no sense that I’m not eligible for the kinds of programs that would make financial independence a reality for me.” And it doesn’t matter whether that support other people receive is through established vocational rehabilitation programs or organizations, or other more general philosophies or practices within hiring organizations. The help isn’t there for you. The acknowledgment that there is even a need for such help doesn’t exist.
These same organizations, who are such champions for employment and education for those who would not typically be considered for traditional employment, frequently refuse, reject, and/or condemn people with fewer support needs and a greater ability to meet nondisabled standards or expectations, who request their help or support. They might as well be pouring acid over the above-mentioned salt in the wound.
Sometimes I get very angry, even bitter, that this has been my experience, over and over again, throughout my entire adulthood. I get frustrated and angry that all my efforts at self-advocacy, all my skill at identifying the accommodations I would need, and problem solving how an employer could easily make them happen, so they don’t need to think about it. That all my efforts to develop compensatory skills, and compromise where need be to meet the essential NT demands without sacrificing my own identity or well-being, were meaningless in this context. That all my efforts were met with condemnation and blame for how I was both “too disabled” and “not disabled enough” to “deserve” disability accommodations.
But then I think about the stories I’ve heard from those on the flip side; stories from disabled people who have been deemed “too severely disabled” to engage in employment, or education, or other aspects of adult life. I’ve heard repeatedly how often they are treated as if they have no competencies at anything.
It’s made me think about how expectations can be placed far too low for the person’s capabilities if the right environment, or accommodations, or education aren’t provided.
The most obvious example that comes to mind is the number of nonverbal/nonspeaking autistics who are and/or have been presumed to be intellectually impaired — incapable of understanding the world around them, much less participating in it, until they are provided and taught a method of Augmentative and Alternative Communication (AAC) that works for them.
Another example is the number of people who have been misdiagnosed with some form of severe mental illness and institutionalized as being incapable of functioning in society, instead of having their autism, or severe sensory processing disorder, or some other disability that had nothing to do with mental illness, recognized. Someone who, with proper understanding of, and strategies for, managing the disability that properly described their difficulties, would’ve been able to live a productive, non-institutionalized life the whole time. (I have heard a number of horror stories where this has actually happened. Some of whom were able to reclaim some semblance of an “ordinary” life once they were properly diagnosed. Others not. What makes me shudder is the number of people this is still happening to that are going unrecognized and unnoticed. Society’s track record of misunderstanding autism is not reassuring, much less other, less recognized disabilities.)
I‘ve been thinking recently about how it would be easy for someone in any of these situations (including me) to think that the other group “has it easier”, or is better treated by society, or… something. But really, our struggles are just different. As are the upsides of being who/where we are on the disability “scale” (for lack of a better word).
As an (early) adult-diagnosed person, I’ve often had conversations with people about whether I think life would’ve been easier for me, or better, if I’d been diagnosed young. Or even if I had been diagnosed younger than I was. My response has always been both yes and no.
Partly because it’s so hard to say how things would’ve panned out.
On the one hand, there are many things that probably would’ve been easier, or better, if we’d been able to explain or understand why they were happening. Or even what was happening. On the other hand, given the time-period, and the abysmal understanding of autism that existed then, it’s equally possible that many of the things I’ve achieved and many of the positive things I’ve experienced would not have happened, because expectations of my capabilities would have been set far too low.
Also, I wouldn’t have needed to develop the drive I did, just to survive, if I’d been in a more understanding, or less intolerant environment.
A slightly different question that I’m sometimes asked, or that I bring up, in relation to this same subject, is “what if we’d had any of my communication disorders diagnosed, but not autism?”
That one’s easier to wish had happened. That would’ve made my life so much easier. But again, society’s understanding of communication disorders was also extremely primitive back then, so… who knows? Maybe the same problem of low expectations would’ve occurred, or there would’ve been some other set of limiting beliefs that my parents would’ve been taught.
The problems I have experienced due to society’s ableism and intolerance are different than the ones I would’ve experienced had I been diagnosed younger. They are different than if I’d been in an environment that didn’t demand I develop so many compensatory strategies to disguise or minimize the difficulties with comprehension and functionality I experienced (despite my intelligence). They are different from the problems experienced by those who have been diagnosed young. They are different from those experienced by people whose disabilities are greater, or more obvious than mine were at the same age. Different, but not necessarily less, or greater, than.
And that’s a place we, as individuals, as family members, as professionals in the field, and as society in general, need to get to: Recognizing that different doesn’t equal “more” or “less”. It means different. It means “more here in one area, while at the same time, less in another, and at the same time, an equal amount in this other area”. And it means “abilities and difficulties within a person will fluctuate over time, while remaining equally valid.”
If we compare each other’s difficulties, privilege, and/or experiences of oppression, it’s important that it not be as a competition, or game of “one-up-man-ship”, but as a means to understand the insidious nature of ableism, of bias, of discrimination, and the ever-changing nature of how this manifests. Only by recognizing the insidious, mutable nature of ableism in our society, and in ourselves, can we better understand each other’s experiences, and better learn how to fight against such forms of hatred and evil.
[1] I’m using the term “severity” somewhat reluctantly, because I know some people object to the term as ableist, but at the current point in time, there isn’t a better single-word term to describe that some people are impacted more by their disability than others due to the nature of their disability, and not due to environmental factors, or society’s expectations, etc.
[2] In addition to divisions within a diagnosis, divides between different types of disability are often subjects of contention in the wider disability community. An artificial stratification or “class system” seems to exist, where one diagnosis is seen as “more important,” or “less disabling” or even “less real/valid” than another. Some examples are between physical disability and mental disability; developmental disability and acquired disability; mental health and physical disability, etc.
Hey all, I know it’s been a long time since I wrote something that wasn’t book review related, and I’m afraid it’s going to be a while yet before the next one. I have, however, started on a couple new potential posts. I hope to be able to make some progress on at least one of them soon. (Tried both yesterday and today, but didn’t get very far.)
If I’m lucky, I may have something for you before October. But then, again, as with most autistics, my functional level varies from moment to moment, and especially day to day, so there are no guarantees. And after a lifetime of having to pressure myself to do things that were beyond my abilities, (beyond any reasonable expectations for someone who wasn’t neurotypical, really), I’ve spent the last couple decades learning how not to be so hard on myself. I now focus on working with my limitations and abilities, rather than against them. I try to focus on practicing both self-compassion, and self-care. Therefore, I don’t put any demands on myself that I’m not certain I can follow through on, unless it’s very important (and very little is at this point in my life. It’s a luxury I gratefully take full advantage of!)
Anyways, given these things, and given that I’ve mostly given up on reblogging anything, I thought it might be interesting for those who follow my blog, or who are interested in my blog but don’t follow it regularly, to have something to look forward to. So I’ve created a list of subjects I have in mind for future posts. I have no particular timeline in mind for any of them, other than that stated above. I expect the final posts will morph somewhat (maybe significantly) from the ideas I have for them currently, but hopefully they will still remain close enough to not disappoint my intended audience.
I’m currently working on the first two listed below, however, I do rely upon inspiration in order to access the language skills necessary for creating such things, so what gets posted first may be one of the other subjects, or something entirely different that pops into my mind between now and then and proves to be more workable in the moment.
Future blog post subjects
The problem with divisiveness among different groups of autistics (and disabled people in general). How ableism is ableism, no matter what it looks like, and that’s what we should be fighting, not each other.
Is the distinction between being a speaking vs nonspeaking person a false dichotomy? (Do some of us fall somewhere in the middle?)
People’s reactions to whether I use speech vs. AAC, and the reactions I wish I’d get.
Able bodied ignorance
My experiences with academic ableism
The difference between autism (and neurodiversity) friendly approaches by non autistics, and ones that are destructive, even annihilating of us. (E.g., why “I love my autistic child just the way they are” is in fundamental opposition to “I want a cure for autism.” But “I wish my child didn’t have so many struggles with everything,” is natural for parents and caregivers to feel, and can fit within a neurodiversity friendly perspective, depending on how it manifests.
The danger of focusing on “what’s wrong” with one’s disabled child, instead of “what’s right”. (e.g., it creates self-esteem and self concept problems, including feelings of unworthiness).
The backsliding on disability accessibility in society in recent years. (E.g. the insistence by some companies that customers use self-checkouts instead of live human beings, or the insistence that everything be done over the phone or online rather than with a live human being, or other tried-and-true methods)
How to succeed at university (or college) with a disability. Or at least some basic principles (e.g., go part time instead of full time; register with disability services; have a specialist in your disability, or a team of them, for advice, support, and advocacy for the intevitable problems that will come up). Based on my experiences and observations of others’ experiences.
Something on autistic burnout. (Not sure of the scope just yet, though my recent experiences may play a part).
Something involving autistic masking. (Again not sure of the scope. May be around one or more of the issues of: Learning how not to mask; or the benefits of being able to be oneself and not masking; or on the risk/reward aspect of masking/not masking in different circumstances?)
I know I’ve been posting a lot of book review posts, and it may seem as if I’ve abandoned regular posts, but I promise I haven’t. Just in case anybody’s wondering or worried. I don’t know when I’ll manage to do so, but I do have a few ideas sitting “on the back burner”, so to speak. I just haven’t had the energy (or inspiration) to write them in my current state of autistic burnout.
My regular posts take me weeks to write, whereas book reviews take me a few days, or less. Therefore, it’s currently easier to work through my backlog of book review drafts, now that I’ve decided to add book reviews to my blog.
So, after posting a couple of books I DNF’d for reasons of ableism and other negative things, I thought I’d write a short post about the disability books I’m currently (slowly) reading, and loving, and have already started a draft for a book review of once I’ve finished them. Both are books I’ve initially borrowed from the library, and then loved the parts I’ve read so much that I’ve gone and bought my own copy, before I’ve finished reading them! 😍😍.
1. Leah Laskshmi Piepsna-Samarasinha’s The Future is Disabled: Prophecies, Love Notes and Mourning Songs.
To my surprise I found this book a whole lot less dark and discouraging, and a whole lot more encouraging than the blurb on the back made it sound. I’m so glad I didn’t pass it up (as I was tempted to do) when I saw an available copy of it on my library’s shelf! And even more so that I didn’t return it unread (which almost happened)!
Every time I pick this one up I find something new to love about it! It also reaffirms to me why the disability rights philosopy is so beneficial and necessary. I’ve found it very encouraging on days when I’m wondering why I bother, and whether I should just give in to those who would say we have no place in “proper” society, and shouldn’t exist. I’ve even bought her book Care Work on the strength of this one, sight unseen!
2. Trauma Sensitive Mindfulness: Practices for Safe and Transformative Healing, by David A. Treleaven.
I initially discovered this one existed via Kindle, then ran across a physical copy of it at my public library. I snatched it up, as I had been eager to see what it had to say, since it’s not a topic that is commonly discussed. It has not let me down. Not only does the author come across as very knowledgeable about the subject, and compassionate towards his subjects, but he has decided to take a wide view of the problem, seeing trauma as a social/societal problem rather than an individual one! He is including systematic practices of oppression and discrimination in his definition and descriptions of trauma!
I was only able to read the first couple of chapters before I had to return the library’s copy (I suspect someone else discovered it’s existence in their catalog, and was as eager to read it as I). I haven’t had the energy to progress any farther since I bought my own copy after discovering it at one of my local bookstores, (and discovered I could fit it into my budget, even though it’s a hardcover), but I hope to when I can manage it!
Perceptions of autism have changed: The current “autism is cool” perspective
It’s been brought to my attention that many of the adults in my area looking for an autism assessment don’t actually meet the diagnostic criteria for autism. Their response when they find this out, is … surprising, to both myself, and the source of my information. It’s surprising, because both of us come from a generation where autism was considered to be “tragic”, and “a fate worse than death”, where autistics were routinely considered “subhuman”. But these people, when they find out they’re not autistic, are sad. They object. They are sure the professional in question is wrong. (And, might I add, said professional is very experienced in diagnosing adults, knows that autistic people can be both highly intelligent and have significant difficulties functioning in everyday life. This person also subscribes to the social model of disability, and the values of the neurodiversity movement, so the biases I mentioned in part 1 of this blog topic don’t pertain).
The reason these people are so upset that they don’t have a developmental disability that interferes with their ability to manage basic functional capacities needed to manage daily living skills and to interact with other human beings, and society in general? The reason they are upset that they don’t belong to a minority that is regularly told by society that they shouldn’t exist, and that a cure for their very being needs to be found, so that no more people like them exist, or will ever exist? The reason, from what we can tell, is because it means they still don’t have a name for their difference. There’s no “justification”, no explanation, for why they feel out-of-step with other people, and with society as a whole. They can’t claim their “membership” in the autism community, and therefore still don’t have a place to belong. They’ve lost the sense of community they’d found by identifying with the autistic community (whether or not they’d actually engaged with other autistic people, in any form).
Standards of social skills have changed
When I first heard about the influx of people who didn’t fit the diagnostic criteria for autism, who are wanting an autism diagnosis, I found myself, perhaps unsurprisingly, reflecting on my own life experiences. First, I found myself thinking about how much my interactions with people have changed in the last several years. Specifically, about how much easier it has become for my social difficulties to be understood by random strangers or acquaintances. For most of my life, I have had to explain myself in great detail before the other person comprehended why I’ve found a particular interaction challenging or near impossible. Sometimes this even happened with people who (supposedly) knew me well. In the last handful of years, however, I’ve gotten a different response. Instead of a blank look, or derision about my ineptitude, the much more likely response has been “Yeah, me too”, or “Yeah, I totally understand that”!! And I usually don’t have to go into much, if any detail at all before I receive this kind of response! The number of times I’ve gotten this response, from people who otherwise have no difficulty in interacting with other people, and are even quite social, (in appropriate ways), absolutely blows my mind!
Further conversations with many of these people has led me to the belief that people in general are becoming more and more socially awkward. They are becoming less and less socially adept than they used to be, due to the increase in the usage of technology in so many different areas of our lives. It seems that neurotypicals in general are now not getting the social interaction experiences, or lessons they used to get as part of typical developmental demands. As a result, they can relate better to the autistic experience than ever before (whether they realize it or not). Given this, it seems to me that, given human nature, it’s only natural that the “path of least resistance” sometimes might be to assume that one’s social awkwardness might be due to autism, whether or not the other difficulties associated with autism exist or not.
At first glance, that might seem an odd statement to make, but consider this: Awareness of autism is greater than it’s ever been. The complexity of how differently autism can present in different people is better understood than it’s ever been. Autistic people are being recognized in an ever-increasing diversity of ability and intelligence levels (in contrast to solely the “classic autism, or Kanner’s autism” stereotype, or the “autistic savant” stereotype). Acceptance of autism, as a valid way of being human, and autistics as valuable, meaningful members of society is greater than ever, thanks to autistic self-advocates, and the development of the neurodiversity movement. To the point where a certain percentage of autistics insist that autism isn’t a disability at all. So, when NTs who struggle with social awkwardness keep hearing about how autistics are socially awkward, and that this is an okay thing to be, even a good thing… then it’s not so surprising that many NTs may “latch on” to this explanation.
However, given how popular autism is in current society, it’s only natural that not everyone who is assessed for autism will actually meet the diagnostic criteria. Some of these people may have other diagnosable disabilities (previously recognized or not). And some of them won’t. Society has always had its percentage of the population who is just undefinably “odd” or “weird”. Who “march to the beat of a different drummer”. Despite Western society’s current penchant for medicalizing all forms of difference, not all forms of difference need or require a diagnosis, or even necessarily, a definition. It is easier for the individual if they can find a community of like persons, who have a name for their difference, especially in this day and age of social movements decrying oppression on the basis of difference. It’s easier to argue with the machine of society if one has a word to use when arguing for equal treatment, but this is not in and of itself a reason for “pigeonholing” oneself into whatever categories happen to be available. Especially if the box doesn’t fit.
My experiences with the diagnosis process, and being socially accepted as part of the autism community.
The second direction my reflections took me when I heard about who is seeking autism diagnoses these days, was even more personal. I started thinking about the difficulties I had, years ago, getting a proper assessment, and with getting anyone to believe that I could have any sort of organic disability at all. Of course, back then, the idea that an intelligent person could have any sort of significant disability, wasn’t well understood, much less accepted, by society. And the difference between an intellectual disability, and a cognitive disability escaped the vast majority of people entirely! For a point of reference, let me point out that Asperger’s Syndrome had only appeared in the DSM a few years before I was officially diagnosed (after a 2-year struggle).
As part of my struggle to attain an appropriate disability diagnosis, I read extensively, researching every subject I could think of that might apply. Then, once I reached university, I had a friend who introduced me to the internet, as it was then. Given this new source of information, I explored it enthusiastically as well. This is how I found Autism Network International, and their email list ANI-L. To make a long story short, I soon found my (elusive, and long-sought-after) home there, my people. In short order, my experiences with them, with the nascent autistic community we were creating, became intrinsically intertwined with my journey to diagnosis.
Without the social support I received from these other autistics, the assurance that I belonged with them, that they saw me as one of them, I never would’ve had the courage to pursue a diagnosis. I certainly wouldn’t have had the courage, or the know-how to persist against all the obstacles that were thrown in my way in the process. These people also provided me a great deal of practical support in discovering how to go about finding professionals who were capable of providing me the pieces I needed to demonstrate that I wasn’t “blowing smoke” when I articulated my difficulties. (See above comments on the ignorance of society with regard to intelligent disabled people). This eventually led to my appointment with my first autism specialist, and subsequent diagnosis (and ensuing extensive support mentioned in other posts).
There is considerable value, in my opinion, to having that social confirmation from other autistics that you “fit” with them, that you are “one of them”, that you interact in similar ways, and struggle with similar difficulties. And as valuable as it was for me to interact with other autistic people online (and let’s face it, sometimes it’s way easier, considering the nature of autism!), it was even more valuable, in its own way, for me to meet some of these people in person and interact with them that way! There are some things that all the research in the world, and all the online interactions in the world cannot teach you (with the possible exception of videoconferencing. I know nothing about the pros and cons of videoconferencing with other autistics). Sometimes the in-person interactions I had with my ANI friends were in an autistic-friendly environment, some in more NT standard ones. Both settings had their advantages.
My experiences with the ANI and Autreat community.
As those of us who were involved with ANI created the evolving concept of autistic community, it was perhaps inevitable, human nature being what it is, that several different categories of “autistic”, emerged among us. We didn’t discriminate against, or exclude anyone from ANI based on them, but there was a certain unspoken level of status involved with the different ones. (I do know of a few autistics who were banned from involvement in ANI, but that was because they repeatedly engaged in abusive, or exploitative behaviour towards other members, despite warnings to stop). The list of categories we had (from highest status to lowest) was “officially diagnosed”, (and therefore unquestionably autistic), then what we called “self-diagnosed and peer confirmed”, followed by “self-diagnosed”, then “cousin”, and lastly there was the occasional “wannabe”. For the purposes of this post, I’ll focus on the categories of “self diagnosed and peer confirmed”, and “wannabe”, with a brief mention of the term “cousin”.
For the first 2-2 ½ years I was involved with ANI, I fit into the “self-diagnosed and peer confirmed” category. Initially this was while I was trying to figure out if autism was the right category to explain myself with. Later, as I became more confident (in part because of the reassurance and encouragement of other ANI members), it was the category used, while I pursued an official diagnosis. During this time, several ANI members helped me figure out how to get an assessment, and how to get professionals to look past their own biases and the superficial level of where my abilities seemedto be, to all the difficulties I had with those abilities.
“Self-diagnosed and peer confirmed” was essentially one step up from “self-diagnosed”, and one step below “officially diagnosed”. It was a status conferred upon you by other members of the community. As I had it explained to me, when I asked, it meant that while you didn’t have an official diagnosis, you interacted with other autistics in a manner congruent with the way they did, and not in ways foreign to, or contradictory to them. It was often rather obvious (apparently, according to those who knew these things better than I did at the time), when someone (no matter what category they fit into, including “NT”) behaved in a non-autistic fashion, both on ANI-L, and in person at Autreat.
While, for the most part, it was only the identified NTs (family members, and some professionals we saw as allies) who typically behaved in a non-autistic fashion, we did have a few people who couldn’t understand the difference between autistic congruent, and non-congruent behaviour. Despite not understanding this difference, these people were still convinced they belonged as part of “us”, even though our community at large saw them as wannabes. As a whole, we didn’t openly contradict them, (at least as far as I know), but there were conversations amongst ourselves about it, especially when the subject of diagnosis came up. They weren’t shunned or ostracized explicitly, but they weren’t as included as others either.
One of the other principal commonalities those of us who were undiagnosed, but who ultimately did receive an autism/Asperger’s/PDD diagnosis, (or an official diagnosis of a related condition) had that the wannabes lacked, was a fundamental uncertainty about whether we were “really” autistic (or, for that matter, whether we were “really disabled” at all). Back then, autism was considered rare, and the stereotype of the nonverbal child who sat rocking in a corner with their back to the room, was the only thing most people thought of when they heard the word “autism”. There was, however, literature about a small percentage of autistics that were termed “high functioning”. Unfortunately, the term “high functioning”, at that time, covered everything from “some degree of speech and lack of intellectual impairment” to “mostly able to pass as nondisabled in society”. And even then, most of us were so much more intelligent, so much more capable, than even this small percentage of the autistic population was perceived to be.
This was the era when it was believed that only 20-30% of autistics were of “average or above average intelligence”, so, perhaps it’s not surprising we experienced so much self-doubt prior to diagnosis. Given the ignorance that prevailed at that time, we experienced a lot of invalidation and outright rejection whenever we tried to explain our difficulties to those around us. Needless to say, these experiences only exacerbated our doubts. We always wondered to some degree if our detractors were right, if our perceptions of our difficulties really were exaggerated or made up entirely. It certainly didn’t help any that many of us also had the frustrating experience where, at the same time those around us openly denied our difficulties, those same people would simultaneouslycriticizeusintensely for having them! But no matter how much we tried to deny or dismiss our difficulties, there was a larger part of ourselves that knew we had an accurate perception of those difficulties, and their severity. We just didn’t know how to explain their existence in combination with the extent of our abilities in other areas.
By contrast, one of the identifying characteristics of the wannabes, it seemed, was that they never experienced this self-doubt, and instead, refused to accept any contradictory information that suggested there was a different explanation than autism for their differences.
I’m not saying that someone who is undiagnosed, and never questions whether they’re really autistic can’t actually be autistic. What I am saying though, is that those who are more willing to question their beliefs are more likely to do better research, and explore more possibilities. Having done this more extensive research means that by the time they get an official autism assessment, they are more likely to have a better understanding of the specifics of their difficulties, and to be correct that autism is the best explanation, which is then corroborated by a diagnosis from a qualified professional. The reason for this is because those who do more extensive research, and don’t fit the diagnostic criteria for autism, are more likely to have found a better answer to their questions elsewhere (which may then lead to an assessment and official diagnosis of something else).
As I’ve mentioned, having a diagnosis of something other than autism (or no diagnosis) wasn’t necessarily a deterrent, or a barrier to one’s being included as “one of us” on a social level, when I was part of ANI. What was more important was whether a person interacted with autistics in a manner that was familiar, or “close enough” to autistic type behaviour, vs. in contradiction to it. The category of “cousin”, was created for those people who were neither NT, nor autistic, but somewhere in between, and were able to interact in an autistic congruent fashion when in autistic company. (See Jim Sinclair’s “History of ANI” for the exact origin of the term (Sinclair, 2005)). Some examples of diagnoses that fit this category were ADHD, Tourette’s, Nonverbal Learning Disorder (NVLD), and Semantic-Pragmatic Language Disorder.
This was before the term “neurodivergent” became such a buzzword. It was, in fact, during the infancy of that term. These days one might also refer to “the broader autism phenotype”. Like the title of “self-diagnosed and peer confirmed”, “cousin” wasn’t a category or a term one could assign to oneself, it was a title given to you by someone in the community whose status as autistic wasn’t questioned. Once having been identified as a cousin, however, one could, thereafter, use the title when referring to oneself, if needed, to clarify one’s status in the community, or the validity of one’s perspective compared to an NTs.
The Autism community has changed and expanded
Unfortunately, these days, from what I’ve seen, much of the social confirmation people seeking an autism diagnosis receive comes from people who they have never met in person, who only know the bits of oneself that is shared online, and from people who aren’t part of the larger autism community. People who may not even be aware there is a larger autism community, much less what it involves (e.g., may not even know the terminology of services providers, or support services, or therapies, or related conditions). If one’s only contact with other autistic people comes from people whose sole interest is in interacting with those who they can say “me too” with, who aren’t interested in divergent experiences, or in the wider perspective, then I wonder how accurate are such experiences really? This kind of support strikes me as involving a little too much confirmation bias, and not enough reality check. Especially in this day and age where autism is trendy, and where it is being referred to by some people as never disabling, despite the very real experiences of many on the spectrum of struggling against the strictures of their own brain, and not just societal expectations.
Upon further reflection, I’ve realized there is a glaring discrepancy between the amount, and the kinds of research those of us involved with ANI did, (especially those of us who were trying to carve a path to an official diagnosis) compared to the kinds of research that is done by today’s undiagnosed population. One that, on the face of it, doesn’t make any sense. At least to me. There is so much more information available to non-professionals these days; there are so many more opportunities for people to interact with other autistics, online and off, in today’s world, that it seems like people should be more informed, and better “armed” for lack of a better word, before they make it to the point of requesting a professional assessment, than we were. Autism is no longer considered rare, (quite the opposite), and there is now plenty of information out there on the characteristics of autism, in whatever form it appears. Autism is also no longer considered to only affect children (though most of the funding still only applies to them). There is now even plenty of information out there, both by professionals, and by autistic adults themselves, about how autism can manifest in adults. There is plenty of information available on how autistic people learn, compensate for their difficulties, and find workarounds to deal with the things they can’t compensate for.
Autistics are no longer considered “unemployable” or “uneducable”, so it’s not uncommon to see us in highly skilled careers, or higher education. There are even entire colleges and primary and secondary schools in certain countries that are designed to meet autistic needs, that treat them as real people, not “special education rejects”. And yet, despite all this, it seems most of the autistics I’ve encountered online have never interacted with any other autistics in person. Even before the COVID pandemic removed or restricted options.
My experiences with other autistics online in the last couple of years have also made me wonder how many of those people have really interacted much with others online either. And if they have, how much of it has consisted solely of confirmation bias. Specifically, I’ve had numerous experiences with autistic people online, and with people who are trying to figure out if they are on the autism spectrum, who are, to me, remarkably clueless about autism. They are also remarkably clueless about what the broader autism community is like, and have had very little contact with anyone else who’s autistic, but they are convinced autism is the right answer for their differences anyways. This lack of research, and lack of involvement with the wider autism community, despite the greater availability of opportunities to educate themselves, as well as to develop social connections among autistic people (thanks to the internet, and in-person conferences and gatherings) is shocking to me. But maybe that’s because it was so much harder for us to find any decent information, back when I was first involved with the whole process. Back then, if you wanted the information, you really had to be determined to search it out, so everybody I encountered was.
In closing, I feel the need to reiterate how important it was for me to interact with other autistic people in person, as well as online. These interactions were overwhelming, at first, but they were also extremely valuable! I learned a number of things from my interactions during Autreat (for example), that I never would’ve learned just through online interactions. Those times are some of my best memories!! I highly recommend attending gatherings of other autistic people, especially where it is designated as “autistic space”, or where autistic social rules reign. It may take more than one attempt to find the right group for any particular individual, but it is absolutely worth it!
And, just as a last element of clarification, I feel I should mention that other ANI participants, or Autreat attendees from the time period I’m referring to may remember some of the details mentioned here differently than I do. I tried to keep my comments here as accurate as I could remember to the conversations I had. Those conversations were with people who were (essentially) our community leaders (though I hesitate to use the term, even if it fits, as we didn’t have that kind of formal structure, per se). These people were older, and more experienced, with autism, with interacting with other autistics, with self-advocacy, and with the disability rights movement in general, than I was. Even after I was no longer considered a newbie. Some of what I have relayed here is also from my experiences on ANI-L (the email list operated by ANI) during the rest of the year, between Autreats.
I hope my contemplation here on the subject of self-diagnosis, and my recollections of my experiences from when the subject applied to my life, have proven useful to any who read this.
Okay, so here it goes, despite my aversion to engaging in the contentious aspects of autism politics, I’m actually going to contribute to this (often contentious) discussion that’s popular these days, on the topic of self-diagnosis and autism. The reason? It’s been brought to my attention that I may have something useful to add to the fray. And since it’s such a complicated topic, I’m going to break this into two posts, for the sake of brevity. The first will provide context for why this isn’t a simple issue, and the second will cover more of my perspectives of what I see currently happening in society, and my own relevant personal historical experiences.
There is no simple answer to whether self-diagnosis is “valid” or not.
First off, let me start by saying I’m not going to comment on whether self-diagnosis is valid or not. It’s not my place. What I will say, is that I don’t believe there is a simple answer to the question. No easy blanket answer of “right” or “wrong” that covers every situation. It’s a complicated, and tricky subject. Both sides of the “validity” argument have legitimate aspects to their perspectives, but neither side tends to address the whole problem with their arguments. To review, here is a sketch of a few of the most prominent arguments.
Access to autism assessments is difficult to obtain
The most frequently mentioned argument brought up in favour of self-diagnosis is difficulty accessing assessments. There are several aspects to this problem: Finding qualified practitioners; long waiting lists; and the expense of assessment (if it isn’t covered by health insurance, or other governmental programs, such as universal health care). Furthermore, many governments are only just beginning to realize that autism affects more than just young children, so funding for services for adults is often sorely lacking. As a result, actual therapy or support services for adults are often non-existent, or nearly so. This can make some professionals reluctant to provide an adult with a diagnosis, even if it’s warranted, because they feel there’s no benefit to one without support services.
The issue of finding a qualified professional to provide the assessment is a complicated one, that deserves further discussion. Let’s start off with a couple of definition related difficulties: The definition of “qualified” can very greatly, depending on what a person is looking for. Qualified in which aspects? How many aspects? With how broad a section of the population? Given that autism is such a diverse condition, someone with significant motor, language, and executive functioning difficulties will often look very different from someone who has no motor skills impairment, minimal executive functioning challenges, and whose only language difficulties are with social language. Of course, different degrees of intellectual ability also change the picture. Additionally, autism often looks very different in children than it does in adults.
Some people prefer to use the term “experience” over “qualified”, thinking it is a more reliable indicator of a professional’s ability to provide the services required. But even the term “experienced” has greatly variable meanings. Again, experienced in which aspects? With which portions of the population? How extensively? And according to who? (That individual? Other professionals in the field? Some governing regulatory board?) For that matter, how many years qualify as “experienced”? 2 years? 5 years? Or does it mean 10+?
Finding professionals who are knowledgeable about autism in adults (because when talking about self-diagnosis, we are usually talking about adults) is getting easier, but can still be a challenge. Finding professionals who don’t have a bias against autism occurring in intelligent adults, especially highly intelligent adults, can be even harder. For example, some professionals (usually of the older generation, who were trained differently than people are now) may still believe that intelligence and autism cannot co-exist. Or worse, they believe that intelligence and any form of disability cannot co-exist, short of traumatic brain injury (or specific learning disabilities, sometimes). These people (and others with ableist beliefs, who oversubscribe to the “deficit” model of disability — otherwise known as the medical model — often believe that diagnosing an intelligent person with any significant disability would “ruin their life” because it robs them of their value as a person, even of their personhood entirely.
To these (usually able-bodied) people, it is better for anyone who can to “pass” as nondisabled, to do so, in order to not suffer the consequences of society’s stigma. This kind of ableism takes many forms, some of them more obvious than others. Sometimes, it takes the form of denying the disabled person’s reality, in terms of “if you can describe your difficulties, you can’t possibly have them”, or “if you can interact with me suitably here and now, you must always be able to do it, therefore, you can’t really be disabled the way you say.” (And yes, I’ve had all these accusations directed at me, at different points in my life. Both pre- and post-diagnosis).
In the last few years, another aspect of bias has been attracting a lot of attention: The underdiagnosis, and late diagnosis of female autistics compared to males. One of the arguments being made explaining this discrepancy is that autism looks differently in girls than it does in boys, and therefore, has traditionally been missed when assessing girls. The argument goes that it is only with our improved knowledge of autism, as a result of academic and clinical research (by neurotypical, nondisabled researchers, typically) that society is becoming better able to recognize autism in females. (Autistic voices, and the recognition by neurotypicals that we have something meaningful to say about our own experiences has also added to this improved knowledge, but is often overlooked by the people making this argument). This better recognition is beginning to turn the old statistic that autism occurs 4 times more frequently in boys than in girls on its head. It has yet to be determined what the true ratio may be, but it is obvious that it will be much more equal than previously considered. Still, currently many autistic females (or those who have been assumed to be female) currently don’t receive a diagnosis until they become adults, and often not until the demands of family and career become too much for them to handle, in their 30s to 40s. This means that until recently, autism in females has been woefully underdiagnosed.
Another of the popular arguments currently being used to describe how so many autistic females have, and continue to “fly under the radar”, is that of “masking”. This theory is so popular, in fact, that the term “masking” has become a new buzzword in autism circles, describing how autistic females learn to disguise, or entirely bury, their autistic difficulties in favour of more neurotypical seeming behaviours, despite not understanding these behaviours in the same way as neurotypical people do. This argument relies heavily on the differences in how Western culture socializes girls vs. boys, with a greater focus on relational skills, instead of practical ones.
The importance of this theory differs for autism professionals vs individuals seeking an autism diagnosis. For concerned professionals, the question they ask themselves may be “How do I tell if this person I’m assessing has the necessary social, communicative, and functional skills required of typical adults, or if they are merely using masking skills?” For an undiagnosed autistic person themselves, whose life has become unmanageable in its current state, they have likely spent years, or decades, struggling to hide, cover up, or outright deny the existence of their difficulties, until they can no longer do so. For them, they may no longer know what is acquired compensatory skill, what is masking, and what is authentic comprehension of the world around them. It can take a skilled professional asking the right questions to sort these things out. So, if the question that brings a person to an autism assessment is “Is autism the answer to why everything about my life, and the world around me is so difficult comprehend, much less manage, especially concepts or tasks other people intuitively understand?” Then their questions become, “How do I know when I’ve found an autism professional who can see past any superficial coping mechanisms, whether they be masking or compensatory skills, to my underlying difficulties?” “How do I know when I’ve found someone who can help me?”
There is no easy answer to that question, except to hope that you find someone who is both qualified, and experienced in diagnosing adults, and preferably one who believes, at least partially, in the social model of disability, and welcomes, or even participates in, the neurodiversity movement. Some people have found success approaching their local Autism Society, or asking other members of their local autism community for recommendations, or going online and asking these questions, if there aren’t any nearby services, while others have not. The number of autism professionals, and other medical professionals in general who are starting to “come on board” with decrying ableist perspectives of autism and disability in general, is increasing, but it can still be a “luck of the draw” in different geographical locations. Still, if you can find someone like this, these are the professionals who usually see the benefit in diagnosing adults, or can be convinced to, even if there aren’t any support or therapy services to offer adults in that geographical location. These professionals understand the less tangible mental health benefits of knowing, of being able to explain, to conceptualize, and to stop blaming oneself for things that are beyond one’s control.
Undiagnosed autistics do exist
So, given all these difficulties accessing assessment services, yes, there are autistic people who go undiagnosed, because they can’t access assessment services, for whatever reason. These people deserve to know that autism is the reason for their differences. In these cases, self-diagnosis can be a valid first step in the process of learning why they are different, why they have such a different perspective on the world, and on life in general. Why they feel like an alien (or… whatever), and why they struggle so much with comprehending, or carrying out things other people take for granted, or don’t even think about. Recognition that a neurodevelopmental disability that has existed since they were born is the cause of their difficulties, rather than some kind of “personality flaw” or “character defect”, can help alleviate some of the shame and guilt of being different.
With less shame and guilt from not being able to “measure up” to societal and family standards that are designed for neurotypical people, the person may then be able to engage with the world in an entirely different fashion. Self-compassion and self-acceptance can take the place of shame and guilt. Part of this process involves learning to let go of certain neurotypical expectations that have never ‘fit’, or worked for that person, and to develop a set of expectations that do work, and under what conditions they apply. (Autistic functioning levels being highly variable under different conditions of stress and fatigue). Learning to work with this new model of one’s self can also lead to a better sense of self-worth, as self-compassion increases, and self-condemnation diminishes.
Not everyone who is socially awkward is autistic
However, that said, these days, perceptions of autism have changed drastically from what they were even a few years ago, much less a decade or more ago. The profound stigma that used to surround autism, is now much less prevalent than it used to be. These days, autism is seen, by many, as “cool”, even as desirable, rather than “a fate worse than death”, the way it used to be. Some of those on the spectrum don’t even see autism (especially the kind formerly called Asperger’s Syndrome) as a disability at all, but instead as simply another form of diversity natural to the human species. (To be clear, I’m not arguing that it’s not, just that autism is also a disability).
As a result, all sorts of people who previously wouldn’t have considered their form of difference important enough to name, much less seen it as a disability, are now seeking an autism assessment. Inevitably, only a portion of those people will actually fit the diagnostic criteria for autism. Similar to the way ADHD gained “popularity” several years ago as the latest “catch-all” explanation for why children couldn’t pay attention in class, or had behavioural difficulties in certain situations, now, it appears, it is autism’s turn to be the “catch-all” for certain types of difference. Only in this case, rather than children, it seems to be mainly adults who are the most interested in claiming the “title” of autism.
Furthermore, not all of those who are seeking an autism diagnosis are even looking for support services, or assistance in dealing with the differences which bring them into conflict with the wider society, (in other words, the usual reasons someone would be looking for a disability diagnosis). Many, in fact, are only looking for a name for their difference. Something that “justifies” their differences, and gives them a place to belong. And due to the current strength of the voice of the neurodiversity movement, the autism community seems to be a “ready made” community for them to join. It seems to be a place where they can celebrate their differences and argue that the world should accept them the way they are, without any need for them to negotiate a balance between their own inclinations, and the demands of living among a large group of other people. (It should be noted that, even among a group of autistic people, there is a certain need to respect other people, and cooperate, and otherwise “get along” – there is just more tolerance for difference, and a different set of rules involved).
These people are looking for acceptance, rather than practical support. To use the language of the DSM, they are not experiencing “clinically significant impairment in social, occupational, or other important areas of functioning” (American Psychiatric Association, 2013). “Clinically significant distress” perhaps, but that has more to do with society’s attitudes towards difference, rather than the differences themselves, and that’s not a neurodevelopmental condition! That falls more under the rubric of mood disorders or adjustment disorders, not developmental ones.
My own experiences
So, now that I’ve explained some of the context around how tricky the subject of self-diagnosis is, and why there’s not simple answer to “is self-diagnosis valid or not”, and why I won’t come down firmly on either side, I’ll conclude part 1, and go onto part 2. Some people may be wondering why I bothered writing this at all, considering I won’t go the easy route of taking sides, and giving a “yes” or “no” on the question. As I mentioned in the first paragraph, it’s been brought to my attention that I may have something useful to contribute to the conversation (or argument, depending on how you see the subject). Specifically, the subject of the rate of self diagnosis in society, and the utter conviction many people have that they are autistic, even when confronted with an official assessment that says otherwise, keeps coming up in different conversations I’ve had with certain people in my environment (real and virtual). These conversations have gotten me thinking about the subject, and reflecting on my experiences with it, years ago. Both my direct experiences, and indirectly, as I watched others trying to answer the question as to whether this was the answer for why they didn’t “fit” with society, and struggled with so many other things other people took for granted.
In part 2, I will address in more detail how the change in society’s perception of autism has resulted in more people being willing to consider autism as the explanation for their differences, as well as the “bandwagon” effect that is currently happening. I will explore other changes in society that provide alternative reasons for the increasing social awkwardness in the nondisabled population (hello technology!). I will also describe some of my relevant experiences with the autism community (both online and in person) years ago, when the notion of “autism community”, much less “autistic culture” was in its nascent stages, and still considered an oxymoron by most. And, of course, I can’t discuss the subject of self-diagnosis and official autism diagnosis without discussing my own experiences on my path from self-diagnosis to self-diagnosed and peer confirmed, to officially diagnosed, at a time just after the DSM officially recognized that intelligent, functional people could be autistic.
How Autism Self-Advocacy Revolutionalized My Life 