I took a sociology class recently and I learned a term I really resonated with; negative social sanctions. “In sociology and economic theory, negative sanctions are a means of enforcing social norms and values by punishing deviation from the norm or established rules (Little, 2016).”(Credit) This term refers to society’s response to those who do not correspond […]
Mostly very well said! Saves me the energy of finding my own words to say very similar things about my experiences in the last year, and those I’m currently struggling with. Such developmental trauma sucks! Especially when compounded by more recent ableist attitudes and refusal of support from unexpected directions. Even all my years of involvement in the autism self-advocacy and disability rights movements, as an adult, haven’t made me invulnerable to this kind of ableist attack, and its effects.
Respect is important. And all too lacking for autistic people. Of all levels. We each have our own distinct difficulties and issues of prominence, but one of the things we have in common is the lack of respect, and the desire by society in general, to get rid of us. And to prevent any more people with our unique abilities and difficulties from existing in the future.
For all the progress that has been made by western society in the last few decades in understanding and accepting disabled people, and autistic people in general, there has been an awful lot of resistance and backsliding in recent years as well.
Cover image shows multicolored people in silhouette with a person in a wheelchair at the center. Introduction: In the past, people have asked us, “Why ae you the Disability Ministries Task Force? Why not the Differently Abled Task Force?” Well meaning questions such as this inspired me to write this article. Language has power. I […]
I know it’s been a few months since I added anything to my blog; autistic burnout sucks, what can I say? I haven’t even reblogged anything in ages. Mostly because WordPress hasn’t recommended anything to me that reached my threshold of being worth reblogging (said threshold being “OMG, this is so good, I just have to share this with everyone!”.) There have been a number I’ve liked, and a number I’ve commented on, but none that met the above stated criteria for spending the energy to reblog.
That said, this one qualifies. Even though organized religion and I don’t get along. For many reasons. (Some autism related, some not.) I know religion is important to many autistic people, and many more disabled people of other kinds. I really enjoyed this blogger’s perspective on the importance of the word “disabled”. Both in spiritual communities, and in life in general. It gave me some perspective I didn’t have before into how disability and religion can go together in a good way, for people that is important to. (And really, given how important religion is to so many people, and in a larger sense, spirituality is to many others, we really can’t be a society that is accepting of diversity unless our spiritual communities of all sorts are also accepting and welcoming to disabled people and their experiences.
So, in the interest of diversity, I thought I’d reblog this, and hope those who read my blog also find it as enlightening and encouraging as I did.
A reflection on some questions I’ve been asked (or asking) recently, because they’re weighing on my mind and I’m too tired to keep carrying them. The Good, the Bad, and the Binary Thinking A few months ago, someone asked me what I consider to be a healthy space. My first impression of this question is […]
I had to reblog this, as it’s a really great description and exploration of the concept of safety and safe places. Especially psychological safety. I wanted to do it earlier, but it took me several attempts to work my way through all of it, due to the length. This is definitley one of those things I wish I’d written, only this person did it better than I would’ve thought to.
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.
Last November (2021) I read the book Helping Your Child with Language-Based Learning Disabilities, by Daniel Franklin, and he talked about how necessary it is to provide support when a child has a disability. Specifically, how important it is to provide the help the child needs, when they need it, in terms of relevant accommodations, as well as what he calls “bypass skills”.
In my experience, when I was a newly (and not so newly) diagnosed autistic, in my 20s and 30s, (also known as my university years) this took the shape of the philosophy my autism specialist had, where her advocacy on my behalf meant explaining to the other service providers in my life, the value of “doing things for” me, rather than them expecting me to do (or learn to do) everything for myself. In so doing, they were ensuring that I had the capacity and the ability to do the things only I could do, such as eating, sleeping, walking, and doing homework.
In Franklin’s book, he makes a great analogy about how not providing those bypass skills, or accommodations, is like “expecting a person to learn to square dance at the same time they are learning to play the fiddle.” (p. 46). This is such and apt analogy! It got me thinking about how overwhelmed I was during my university years, (and even more so before I was diagnosed), and how much I learned as a result of this philosophy my autism specialist had, and the support it provided. Franklin’s book got me thinking about how so much of what I’ve learned in terms of how to deal with the Neurotypical world, and how to interact with it, is due to the effects of this philosophy. How it took the load off of me, how it reduced the feelings of overwhelm, and overload, to something manageable enough that I was able to function much better at the things I did know how to do, and had the ability to access, than I had been previously.
Looking at where I’m at now, so many of the skills and abilities I have now, along with the ability to use them, are because I had someone who understood my difficulties, and then explained the specifics of them to me, in a non-judgemental, even compassionate way. Of course, this started with having someone who believedme when I said I had difficulties with something, or didn’t understand something, even though it was a concept or a task other people of similar intelligence had long ago absorbed by osmosis. Someone (my autism specialist) who went “well, of course, that’s difficult, or doesn’t make sense to you, because that’s part of autism.” And even more importantly, she was able to say “here’s how to make it more manageable, or more comprehensible”. In doing so, she was able to help me and/or others in my environment reduce or remove the overload I was feeling, until I was dealing with a reasonable allostatic load.
Thanks to her, I learned to “flip the script”, so to speak. Rather than focusing on the NT set of expectations I’d been taught all my life, the one I could never manage to meet, or measure up to, I could start to focus on what I was accomplishing, despite all sorts of difficulties NTs never encounter. In doing so, I learned to develop a set of expectations that were reasonable for my autistic brain. She taught me, small piece by small piece, how to reframe my expectations of myself so that they actually aligned with reality rather than some able-bodied fantasy that had never applied. As our relationship developed, and I learned to trust that she always had what was truly best for me in mind, this sometimes involved her criticizing me when I knowingly overdid it and she had to help me pick up the pieces. This was always delivered from a place of compassion, however, so I was able to tell the difference between it and the condemnation that was directed at me by other NTs. My family doctor occasionally also reinforced this compassionate criticism when she too had to assist in picking up the pieces. Knowing that both of these people honestly had my wellbeing in mind made all the difference. In a way, it was this knowledge that they would help me establish and reinforce these healthy boundaries, both with myself and with the outside world, that was most effective in allowing me to respect my own limitations, and to develop self-compassion, and self-acceptance of, and for, my disabled self.
Having someone who would (and did) advocate for me with other service providers, explaining what I needed, and why I needed it, when it flew counter to their expectations, or stereotyped beliefs, or etc. provided me with many of the necessary supports required to get me through university (twice), and also to just function as an adult both in independent living and supported living situations while doing so.
More importantly though, in some ways, was my autism specialist’s advocacy for me, with me. That is, her encouragement, her passionate belief in my underlying worth, and her compassion. Her insistence that I had a place in the NT world, in society, and that I had something valuable to contribute. That I deserved to exist, as I was, as my autistic self. That I belonged. These were vital parts of my healing, and my ability and willingness to engage with an often hostile, intolerant, and obstructive world that is designed in fundamental opposition to the way my brain is wired.
Back then, it was incredibly rare to find professionals of any kind who subscribed to the social model of disability, so she often had as much trouble as I did getting the world to believe in the value of neurodiversity (this was back before that was even a word). As a result, she would often commiserate with me whenever I was dealing with some ableist person, situation, or organization! She had almost as many struggles dealing with ableist people as I did. Needless to say, this was an unexpected, and amazing aspect to that relationship and helped greatly in helping to bond with, and trust her. As much as having autistic friends online who subscribed to the disability rights perspective was greatly beneficial to my sense of self worth, (discussed below), having an autism professional who lived in the same city I did, who believed in it, in me, was, in its own way, even more beneficial, in practical terms of living my daily life.
This process of advocacy, of learning, accepting, and enforcing my limitations allowed me to finally acquire the mental space and energy necessary to learn new things, whether it was coping skills, academic skills, functional skills, or even just a better understanding of myself and how I work. Things that allowed for self compassion and self acceptance to take root.
The other half of the equation, so to speak, was having a community of other people “like me” who could teach me self-acceptance, practical life tips, self-advocacy, and other things. Most of the time this meant my online involvement with Autism Network International (ANI), though once a year we got together in person at Autreat. However, through my university’s disability services office, I met some people with other disabilities who also subscribed to the disability rights philosophy, and helped me develop my self-advocacy skills. These relationships allowed me to feel less like an alien, (or at least like I was in the company of other aliens), and to finally find somewhere I belonged. Somewhere I could relax, and feel accepted. A place where I could admit to things that no one had ever allowed me to admit that I didn’t understand, or didn’t like, or couldn’t do, or didn’t want to do, and why. Many of these things were ones that were overwhelming, that other people take for granted, or otherwise things that nondisabled people just don’t “get”.
The more I reflect on my own life, and catch up to date with the state of the autistic community these days, (after about a decade away), I’m realizing even more, how important it was that my social group of disabled people accepted themselves for who they were, believed that we had a place in the world, and continued to strive to make that happen. I’m realizing how important it was that my community (of autistic friends especially), were interested in learning as much as we could, not only about autism, but about its related conditions, about self-advocacy, about activism, about other disabilities, and disability rights in general. It was equally important that as we learned these things, we prioritized figuring out how to apply all of that knowledge into useful strategies for how to navigate adult life successfully in general, as disabled people in a nondisabled world, and then sharing the wisdom we gained with other people, both within and outside of our community. This attitude and principle has contributed greatly to my growth as a person, both in understanding myself, and the world I found around me. It is, in fact, a fundamental part of my identity as an adult. This “growth mindset”, if you will, allowed for great strides in my ability to interact successfully with the world around me.
It’s something that I’m just not finding in the autistic community I’ve been encountering online (since 2021). It seems to be something that is sorely lacking in the accounts I’m reading of other autistics, (new and not so newly diagnosed) online, as well as many of the individual interactions I had last year.
What I am seeing reminds me of where I was prior to finding ANI, to finding others like me, and prior to my diagnosis, and all the knowledge that came afterwards. Looking back on my life, it always strikes me (again) just how overloaded and overwhelmed I was prior to diagnosis. How overtaxed, and in many ways, hopeless I was. Nobody was listening to me or even would listen to me (with a few very rare exceptions), when I tried to communicate my difficulties, or ask for information on the missing pieces. Many of my attempts at self advocacy, such as it was, and many of my attempts at independence, really, were sabotaged, because people dismissed my concerns, my insights, and my understanding of myself. More than that, they frequently invalidated anything I said, felt, or thought. It wasn’t until I had people who took me seriously, and who were willing to actually work with me, that I even began to have the capacity to learn any of the obnoxious things the NT world tried to force upon me.
This leads me back to the book I mentioned at the beginning of this article. To what true support looks like. To the attitudes that encourage growth vs the ones that discourage it, the ones that promote helplessness. To quote Franklin: “The fastest route to a lifetime of dependence is withholding the support that is needed when it is needed.” (pg. 5). Tolerance. Acceptance. Flexibility. Adaptability. Respect. These are attitudes that are vital to making change possible. No matter what your role in a disabled person’s life. As a person who didn’t have any of her disabilities recognized until adulthood, my experience with such people has been mostly with disability professionals. The ones who were the most effective, embodied these qualities. Growing up with the presumption of being nondisabled, it was a bit of a “culture shock” to have people who finally understood me, once I got my disability diagnoses.
Encountering skilled, experienced, respectful professionals who actually understood disability, (rather than those who just pretended to), on a general level, as well as autism specifically, was vital. These professionals helped me to understand the “terrain” so to speak, that I was now in, looking for disability supports and accommodations. In the broadest sense, the knowledge that there was an answer to all these disability problems I experienced, in and of itself, was an enormous relief to me. It provided hope, if nothing else. And then there was the knowledge, the recognition by those in my environment that inability or overwhelm didn’t mean “not trying”. That, in fact, it usually meant that I had overexerted myself too far, often unsuccessfully. That I had overexerted myself to the point where I felt so frustrated that any further effort seemed futile.
On a more specific level, the most effective disability professionals I ran across in those early years, knew that some concepts are common across disabilities. Some of these commonalities they taught me include: information is going to process differently, and often, more slowly; sometimes you have to provide information that seems to be “basic”, but isn’t necessarily for that person; ignorance doesn’t mean incapacity; tackling things (information, or tasks) in smaller bites often is a lot more successful than trying to tackle them all at once. Even if it’s really, really small bites (especially with autism). Of course, I also learned that having someone who was able to adapt, and learn what my specific needs and strengths were was also an important factor. As was my ability to learn these things.
To sum up, Franklin’s message in Helping Your Child with Language-Based Learning Disabilities, and certainly my own experience bears out, (as I’m sure that of many other people, disabled and otherwise, does), is that fostering success leads to a desire to learn. Fostering failure leads to a sense of hopelessness and futility, to an aversion to learning and participation.
References:
Franklin, D. (2018). Helping your child with language-based learning disabilities: Strategies to succeed in school & life with dyslexia, dysgraphia, dyscalculi, ADHD & processing disorders. New Harbinger Publications Inc.
this might be a little all over the place but going to try anyway. if whoever reads this doesn’t know what it is, autistic burnout is sometimes what happens when an autistic person spends too much of their energy and time masking, being too overstimulated (or understimulated?) for too long without being able to recharge […]
Just thought this could use a wider audience. So I had to reblog. It’s a good description of so many autistic difficulties. Some of us experience these things during burnout. For others, this is our daily lives. And some of us grew up in a state of burnout, and on the edge of shutdown… There’s so much more I could say here, but I’ll save it for another time.
I’m going to play teacher for a moment, and give you an assignment: Pay attention to all of the people you speak with for seven days, and note how many people actually listen. Pay attention to yourself in those interactions, to note if you listen. When I say “listen”, I don’t mean only with ears. […]
Far too true. And so frustrating. Had to reblog, as I’ve been having this problem with a number of people recently. It’s hard to have a relationship with people who don’t listen to you, or anyone else around them. (Sometimes including themselves).
And on the flip side, being listened to, being heard, is one of the most powerful things one can experience.
You are the expert on yourself. (This article first appeared in Write, the official magazine of the Writers’ Union of Canada, Summer 2022 edition.) One of my favourite things about being in author spaces is discovering how many ways there are to reach the end of a first draft. Some folks are pantsers, meaning they don’t […]
I’ve finally found someone who talks sense on the process of writing when also dealing with disability constraints. So, here I am, reblogging another of her posts on the subject. Off to go discover more!
Have you discovered the book-writing secret that will help everyone? We need to talk. I often see privileged and/or ableist statements floating around the writing and creative communities. E.g. “I’m a single mother with five jobs, and I wrote 50 books last year.” Okay, good for you. You should be proud. But somewhere there is […]
**THIS**!!! About so many things!! From writing, to paying bills, to housework, to … so many things!
And since someone brought up writing, and said it better than I can, let me add in my part. “Writing prompts” are usually useless for me. They are far too generic, and not meaningful enough for me. I discovered a couple years ago (or maybe only last year?) that if I’m going to write, it needs to be about something both important and meaningful to me. (And no, those aren’t interchangeable words). It has to be powerful enough to overcome the expressive language disorder issues I have (even at the best of times, even when it doesn’t show, and I appear to be both fluent and articulate), and the motor planning difficulties I have, so that I actually makes it out of my head, and through my muscles, onto the page or screen. Writing about random people walking by, or random cars passing by, or whatever, just isn’t going to cut it. (I use these examples because one prompt I read in a book the last time I was looking for inspiration said “write about the person getting out of a cab on the street in front of you.”)
Yes, sometimes it’s annoying when I have the impulse, or the drive to write, but no inspiration of what to write about (especially if the drive lasts for days or weeks on end), but I’ve accepted that that’s just who I am, and pushing myself to be different is just another form of internalized ableism, so I’ve stopped it.
How Autism Self-Advocacy Revolutionalized My Life 