I’ve been wanting to write this post for a very long time. The thought struck me sometime in April of this year, shortly after realizing that I was most likely on the Asperger’s/autism spectrum.
At that time, a whole new world was opening its arms and welcoming me.
Suddenly, Asperger’s/autism was not what I thought it was–nothing at all.
Suddenly, my background in neurology, a fellowship program that I had stopped just short of completing, came to my side, as did my genomics (genetics) background. The two came together to lightning-strike me with a sudden theory: Asperger’s/autism is a normal and healthy neurobiological/neurophysiological variant.
That’s right. Autism is not a disease. It’s not some “monster” that “locks us up” in a “cage” (at least, not for many of us). It doesn’t “steal” us or “distort” who we are. It doesn’t corrupt us, tangle us, or hover like dark clouds over us. It shapes who we are; it’s not some extraneous optional appendage that if only we could just drop or shed, we would somehow be “whole” or “pure” or free.
In fact, it’s not the theoretical “cure” for autism that would set us free; our freedom is often sensed when we finally reach our realization, discovery, and/or diagnosis. That’s when we might finally feel free.
I invite you to come on a (rather scenic) journey with me… 🙂
As I delved further into the subject of Asperger’s/autism, it became strikingly apparent how similar the struggles of us, the people on the autism spectrum, are to those of the LGBT/LGBTQQIA community in decades past (and some would–not incorrectly–argue that those challenges continue today). The neurodiversity and LGBT movements share quite a few common parallels. This especially holds true for those for whom their autism spectrum status is discovered in adulthood.
Once upon a time, “homosexuality” was regarded as a disease, a disorder, a mental illness. It was even listed in the DSM, under its own entry. It had a diagnostic code and everything (302.0).
Society at large made all kinds of ridiculous assumptions. The accusations were endless… Their mothers were incompetent, they said, failing to bond with them as infants. They’d been abused or neglected as children. Or they were burned in a relationship with the opposite gender and now they’re “trying” on the other gender for size, shunning all members of the opposite gender. Or they’re perverted, mentally ill, deranged, twisted, or otherwise sick. Or they were tempted by the forbidden fruit or possessed by the devil. Or some other shit. And it was indeed shit.
Horrible “treatments” were forced upon many in the LGBT community. These were all heinous attempts to “cure” their “disease”, to “turn them straight”. Ha. To prevent potential triggers, I’ll spare the gory details here, but suffice it to say that the “treatments” were essentially the same as the more controversial ones many of us are still subjected to today….and of course, the lasting equally-horrible effects are the same as well.
As a result, non-heterosexuals have often found themselves (ourselves) having to mask and act. As children, we may have wanted to play with opposite-gender classmates, but resigned ourselves to those of our own gender, out of apprehension involving being perceived as “strange”. We may have even wanted to play with opposite-gender-geared toys (I know I did, and I was pretty open about that; I didn’t “know better”). We may have tried to mask our gender identity by pretending to be interested in activities and objects that we really didn’t care for. As adults, we may have dated–or even married–opposite-gender partners. We may have even produced biological children. While many of us have known all along that we were different, others of us may have even thought that we were “straight”, until later on, well into adulthood; some of us are just gender-divergent enough to not fit the social “default” of cis-hetero identity, but sometimes not divergent enough to notice any blatant difference or to call our identities into question. (That’s exactly what happened to me.)
Finally, around 1973, the American Psychiatric Association and several other related professional associations saw the light. There had been growing discord over the idea of “homosexuality” as a disease or disorder, and finally, it was removed from the sixth or seventh printing of the DSM-II in 1974. Failing to generate enough evidence that it met the criteria of mental sickness, it was no longer considered a mental illness by the majority; it had been effectively depathologized.
Thank goodness. It was about time.
Things aren’t perfect today, but society has made some vast improvements. Members of the LGBT community are generally able to be much more open about their status, and “coming out”, once considered a rare and potentially life-shattering disclosure, is much more commonplace and it raises far fewer eyebrows. That’s not to marginalize the situation and say that the process of coming out is not still risky–it definitely remains a heavy decision for many, and often (still) with negative ramifications. But generally speaking, the gravity has very much lifted.
Other improvements include the evolution of terminology, from words like “sex” to words like “gender”, the adoption of “orientation” as an excellent non-inflammatory description, the concept of the gender and sexual orientation “continuums” (or would that be continuua?), and the inclusion of a variety of gender identities and orientations on what is evolving to be a spectrum of its own. Now considered a protected class, there are at least a few layers of protection against hate crimes, discrimination, etc. (I’m not naive enough to say that hate crimes and discrimination don’t exist anymore–they definitely still happen; these actions have not magically evaporated by any stretch. But at least there is legislation in place, for whatever it may–or may not–be worth. It’s better to have it than not.) It was no longer considered a “deviance”.
In recent decades, we began to see research into the physical attributes of the brains across genders and sexual orientations. This research (an excellent review is found at the first link at the bottom of this post) revealed anatomical, genetic, and epigenetic differences among the sexual orientation spectrum. Suddenly, being LGBT was no one’s “fault” at all – not the mother, not any family member or friend of the family (who might’ve been pointed at for perpetrating inappropriate behavior that was thought to “turn” someone gay), not the person themselves, not having been “burned” by an opposite-gender partner, etc, etc. It became plainly apparent that people are born the way we are. And our orientation came to be an “operating system” of sorts that very much influences who we are. Gender identity and sexual orientation are not just about who we have sex with, find ourselves attracted to, or show affection toward (or if we do these things at all); these factors influence practically every thought, action, decision, etc, in some way, every day, throughout our lives. They’re reflected in the clothing we wear, the friends we keep, the way we talk, the way we think, the way we act, the subjects we’re interested in, our political and religious persuasions (if we have any), even at times the professions we choose–pretty much everything. They “flavor” the whole person; take away their gender identity and sexual orientation, and you take away key components of our personality; what would remain is no longer the essence of US, but rather, a different person altogether.
The “story” of the LGBT thus far reveals some striking parallels shared by the autism spectrum community. Societal assumptions and misconceptions, the pathologizing of what is actually a healthy difference (and not a sickness), the medicalizing of “deviance”, the (dead-wrong) premise that it’s a “behavioral issue” (as opposed to neurophysiology), the assumption of a need for “treatment”, the particular “treatments” administered, the lasting negative effects of that treatment, the self-conscious comparison of oneself to the rest of society, the acting and masking, the self-discovery and resulting relief/liberation (in many cases), the coming-out process and the difficulty/fear and risks faced when doing so, the realization of the influence of the “operating system” on the whole person, the raising of awareness, the activism, the concept of a spectrum classification, the profound impact on identity…these are all key characteristics shared with the Asperger’s/autism spectrum community.
However, that’s where the two paths/stories begin to diverge…
What follows from this point forward is entirely my own perception, based entirely on my own experience and research; yours may vary (and that’s OK!)…
Society at large appears to be further along in its true awareness and acceptance of LGBT than for that of the Asperger’s/autism spectrum. The American Psychiatric Association came to its senses in 1973-1974 and struck same-sex orientation out of the DSM altogether, whereas it is still (still! In 2016) listed in the DSM-V as 299.0 (Autism Spectrum “Disorder” only), and in the ICD-10 system as F84.5 (for Asperger “Syndrome”) and F-84.0 (for Autistic “Disorder”). This is baffling to me since we definitively know that Asperger’s/autism are absolutely not mental disorders at all; at best, they’re considered “neurodevelopmental ‘disorders'”.
LGBT membership seems to carry less stigma than does autism spectrum status. Society in general does not tend to readily equate sexual orientation with incompetence, ineptitude, or psychopathology (at least, not anymore), whereas these attributes are routinely assigned to Asperger’s/autism.
The coming-out process appears to be a little easier for (many in) the LGBT community than it is for the autism spectrum community (second link at the bottom of this post).
The concept of Gay Pride is much-supported and considered healthy, whereas the concept of Aspie Pride is still frowned upon.
Asperger’s/autism is indeed a protected class under the Americans with Disability Act; however, in order to exercise your rights under that law and be granted its protections, you must have an official/formal diagnosis (which for a variety reasons, can be extremely difficult (especially for females) and/or potentially worrisome/risky (especially in the United States) to obtain).
Of course, since same-gender orientation is no longer pathologized as a “diagnosis”, then no diagnosis is needed; one can simply identify as a LGBT person and be automatically protected (which is exactly the way it should be).
However, Asperger’s/autism does appear to be a neurophysiological variant as well. We are overwhelmingly of sound mind. Many of us absolutely can lead “normal” lives (this is especially true if there is no other psychological/emotional/physical issue), especially with the right supports. Many of us are indeed involved in healthy long-term relationships, some of us do indeed have children, many of us are indeed employed, many of us do indeed have talents/skills/abilities/etc, and many of us can and do express ourselves effectively, whether it’s through speaking, writing, another avenue, or a combination. We are not deviant. We are not mean-spirited. We are not hate-filled. We are not dangerous. We are not unfeeling or uncaring. We ARE capable. (That doesn’t mean that we’re ALL capable of anything we put our minds to, nor do we have it “just as easy” as anyone else, however.)
Asperger’s/autism is NOT a sickness.
Looking back through time, there seems to be a tiny portion of the population that indeed exhibited Aspergian/autistic characteristics. They perceived the world in a different way, a way sharply divergent (and even often downright oppositional) from the “rest of the world”. They harbored unconventional opinions/thoughts about politics, religion, humanity, and the world itself. They saw systems, connections, relationships. They had ideas, visions, theories, revelations. They were also perceived to be aloof, distant, strange, particular, extreme, and eccentric, by other people. Many preferred to be alone, working for long hours in labs and workshops. Many had irregular sleep cycles. Some were known to be asexual.
That kind of sounds like some of the more “obvious” aspects of Asperger’s/autism…
These people weren’t mentally ill; they were just different. And they have existed throughout the ages.
There also seems to be a genetic influence. Parents of offspring on the spectrum exhibit a higher number of Asperger’s/autism spectrum traits themselves, even if they themselves don’t actually meet the Aspergian/autistic criteria (sixth link at the bottom of this post). Research scientists are working (almost too) feverishly to uncover and identify the various genetic and epigenetic factors in Asperger’s/autism, and although they’ve uncovered many genes (I saw somewhere a list of 1500, although this was a while back and I can’t find the link now), the genetic associations vary widely and the lion’s share show conflicting conclusions across multiple studies and are therefore inconclusive right now. But using myself as a familiar “case report”, I look at my own parents and I notice that although they are allistic (non-autistic), I can pick out which Aspergian/autistic traits they demonstrate (and very strongly, at that) and determine exactly whom I inherited each of the various characteristics from.
There also seems to be a devleopmental influence. Theories involving oxytocin and testosterone exposures in utero are Hot Topics in the academic research community right now, and I can personally resonate with that.
But all of this research is for naught if it can’t be used to prove the fact that it appears to be a normal and healthy neurophysiological variant that manifests as a neurological orientation.
All of the investigation is useless if it’s not used to make the lives of the Asperger’s/autism spectrum community less stressful and more fulfilling.
All of the information gleaned is for nothing if it’s not used to help us become who we could potentially be, without trying to strip away our neurodivergent “operating system” and conform to the boring and nonsensical “ideals”, metrics, and principles of general society.
Asperger’s/autism does NOT belong in the DSM at all, for it is NOT a mental illness, psychopathy/psychosis, or behavioral in nature.
Asperger’s/autism is NOT simply some “buggy app” that our brain trips over while running, and thus must be “debugged” from our systems with the expectation that we will fundamentally be the same people we’ve always been, save for a “cleaner” post-“debug” system. It doesn’t work that way.
Asperger’s/autism IS an “operating system” of its own; if you gut our operating system, you’ll end up with a blank hard drive that doesn’t do anything. We would cease to be who we are.
Asperger’s/autism has ALWAYS involved 1-2% of the population–for centuries, or even millennia, or longer.
“Different” is NOT “defective”.
“Eccentric” is NOT “broken”.
“Neurodivergent” is NOT “mentally ill”.
We DO deserve to be able to partake in a Pride movement of our own, if we choose.
Because of the way our brains work, we should actually not only be free to disclose our status, but perhaps recruited for our abilities. Our status should almost be a selling point, at least for various professions.
The American Psychiatric Association finally saw the light in regards to sexual orientation (yay!!); when will they see OUR light, too?
That is all.
Depathologizing Asperger’s / Autism ~ The Diagnostic Criteria Edition ~ November 6, 2016
“The Genetics of Sex Differences in Brain and Behavior” – Frontiers in Neuroendocrinology; Oct 15, 2010; research study review; link to free full text.
“Coming Out As Gay Was Easy; Coming Out As Autistic Was Hard” – The Establishment; May 17, 2016; no paywall.
“Are We Protected by the Americans With Disabilities Act?” – discussion thread on WrongPlanet; no account needed for reading/lurking.
“Hiding in Plain Sight: Diagnosis Barriers For Autistic Women and Girls” – Autism Women’s Network; Oct 17, 2013; no paywall.
“Seeking Official Autism Diagnosis in the United States May Get (Much?) Riskier” – The Silent Wave post; Oct 10, 2016; (this blog).
“Parents of Kids ‘With’ Autism More Likely To Have Autistic Traits” – LiveScience; July 2, 2014; no paywall.
“Autism is a Normal Neurological Variance” – Rhi at AutNot, WordPress blog; July 31, 2016; no paywall.
“Out of DSM: Depathologizing Homosexuality” – Behavioral Sciences; Dec 4, 2015; research study review; link to free full text.