I’ll concede that a minority believe that autism is self-definable though. I’d prefer things that way myself, but the among other things it would make it impossible to gatekeep services for the autistic if self-diagnosis were held in the same esteem as physician diagnosis, so it won’t catch on anytime soon.
I am also pursuing a formal diagnosis because so many people downplay it when I tell them I’m autistic. I don’t have the affect at first glance, but it does come out in my behaviors if you get to know me a bit. I’ve also had the luxury of therapy, eduction, etc.
I also agree that the categorization is overly broad and your original post resonates. There are various non-overlapping clusters of traits that fall under autism.
I do think, however, that at the core of it is a common difference in information and sensory processing.
I've also gone into autism communities before and declared that I had self-undiagnosed myself with autism, which is something I've desired recently, to re-diagnose myself as not being autistic and either having nothing or ADHD. This was totally rejected, and repeatedly brought up was my admittance to a lengthy period of diagnosis, overseen my multiple doctors, from a very young age, which all were seen as evidence of the validity of my diagnosis (conversely, I'd presume, they treat the opposite as more less valid or invalid). Interestingly the same people generally accepted diagnosis, but to reject a diagnosis, well that was beyond the pale and denialism. I brought up the same to a psychiatrist, saying I wanted to be treated by a psychiatrist for ADHD and NOT autism because I believe it will lead to superior outcomes. They blew me off, exasperated, saying that any psychiatrist would simply observe my symptoms and deem me autistic and treat me that way no matter what I did, denying that I even had the capability or possibility to receive treatment which was not based on the premise that I was autistic. Metabolic testing and self-diagnosis be damned.
Just this moment I'm in the process of seeking accommodations. I self reported autistic symptoms to my employer. In the past, during interviews they have accepted my diagnosis and pledged to "accommodate" me accordingly, and I was ticked off as a diversity hire. They asked me to verify such symptoms with a doctor. They subsequently said they reserve the right to an independent psychological assessment of myself or my records. This is very pleasing to me, as either I shall receive accommodations and an affirmation that I am autistic, or my undiagnosis, which is truly a win-win.
If I was in family court, and it was argued that I was unable to say take care of children because I'm autistic, I could not successfully object on the grounds that "I'm not autistic".
Yet my observation is what is considered the true measure of somebodies autisticness, the validity of their diagnosis and their symptoms, is independent psychological assessments by an examiner not beholden to your own self-assessment. I theorise this is both because of a lack of faith in the competence of either of us to assess an autism diagnosis, as well as a lack of faith in our objectivity. I've met a number of self-diagnosed people who are shy about disclosure or asking for accommodation BECAUSE they are self-diagnosed, and while obviously believing in the reality of their autism, are either self-sceptical or believe in others scepticism to a degree not commonly seen in those medically diagnosed.
I don't mean to be exclusionary or gatekeeping, just descriptive of what I believe to be social/political/legal/scientific reality. I don't like that things are this way, I'm aware that hilariously I've never seen ANY evidence that suggests physician diagnosis is more accurate than self-diagnosis, I'm aware of the many historical problems with physician diagnosis, I merely believe that they ARE this way.
This is a phenomenon which is known for a long time in the hacker community. Relevant quote from the Jargon file (http://catb.org/jargon/html/weaknesses.html):
"1994-95's fad behavioral disease was a syndrome called Attention Deficit Disorder (ADD), supposedly characterized by (among other things) a combination of short attention span with an ability to ‘hyperfocus’ imaginatively on interesting tasks. In 1998-1999 another syndrome that is said to overlap with many hacker traits entered popular awareness: Asperger's syndrome (AS). This disorder is also sometimes called ‘high-function autism’, though researchers are divided on whether AS is in fact a mild form of autism or a distinct syndrome with a different etiology. AS patients exhibit mild to severe deficits in interpreting facial and body-language cues and in modeling or empathizing with others' emotions. Though some AS patients exhibit mild retardation, others compensate for their deficits with high intelligence and analytical ability, and frequently seek out technical fields where problem-solving abilities are at a premium and people skills are relatively unimportant. Both syndromes are thought to relate to abnormalities in neurotransmitter chemistry, especially the brain's processing of serotonin.
Many hackers have noticed that mainstream culture has shown a tendency to pathologize and medicalize normal variations in personality, especially those variations that make life more complicated for authority figures and conformists. Thus, hackers aware of the issue tend to be among those questioning whether ADD and AS actually exist; and if so whether they are really ‘diseases’ rather than extremes of a normal genetic variation like having freckles or being able to taste DPT. In either case, they have a sneaking tendency to wonder if these syndromes are over-diagnosed and over-treated. After all, people in authority will always be inconvenienced by schoolchildren or workers or citizens who are prickly, intelligent individualists — thus, any social system that depends on authority relationships will tend to helpfully ostracize and therapize and drug such ‘abnormal’ people until they are properly docile and stupid and ‘well-socialized’.
So hackers tend to believe they have good reason for skepticism about clinical explanations of the hacker personality."
You start off with some institution that has a set of rules on paper, which nobody actually follows or even reads because they discover what they're expected to do via social cues. Then someone with autism doesn't pick up on the social cues, commits a faux pas, and the administration flips through the rule book to find whatever rule they can be found to have broken in order to punish them.
The autistic individual is then told that they are bad and need to learn to follow the rules, so they read the rule book cover to cover and follow every rule to the letter. But many of the rules are aggressively stupid and impractical or even purposely designed to be violated by ordinary behavior so the administration always has an excuse to punish whoever they want. Strictly following them is also a faux pas.
The question then is what to do about it. The autistic individual wants some accommodations so they're not constantly being punished for not picking up social cues. The administration wants them to take some drug that makes them stop being atypical, or to be rid of them. These are, of course, two very different and incompatible things.
Autism and intellectual disability are different things. Successful people like Bill Gates can also be depressed, as can somebody who sits in a corner. That doesn't say anything interesting about depression, nor does it say anything interesting about autism. Same with cancer or male pattern baldness or really just about any condition you care to think of.
It's called "autism spectrum" for a reason, partially because a lot of the symptoms overlap with each other, and can appear in every possible permutation.
> The reason many people think autism is a faux disorder is because it includes everything from an individual who simply sits in the corner endlessly flapping his hands, completely unable to function as a human being, to Bill Gates or Elon Musk.
At least for the latter, it's undeniable he's presenting quite a few symptoms, and that even before he went off the rocker in 2018 with the "pedo" comments. He's lucky to be as rich and successful as he is.
According to the scientific literature, 50 to 70% of individuals with autism spectrum disorder (ASD) also present with comorbid attention deficit hyperactivity disorder (ADHD). From a clinical perspective, this high rate of comorbidity is intriguing. What is the real significance of this dual diagnosis? Is ADHD in fact always present in such cases? Might the attentional impairment reported among our ASD patients actually be a distinct trait of their ASD—namely, impaired joint attention—rather than an ADHD attention deficit? Could their agitation be the consequence of this joint attention impairment or related to a physical restlessness etiologically very different from the agitation typical of ADHD? The neurobiological reality of ASD-ADHD comorbidity is a subject of debate, and amphetamine-based treatment can have paradoxical or undesirable effects in the ASD population. Consequently, does a dual diagnosis, notwithstanding its currency in the literature, prevent us from shedding sufficient light on major physiopathologic questions raised by the clinical picture of ASD?
I believed this until my daughter was diagnosed and then I was later diagnosed. My experience with (some) professionals was a surprise to me; a much wider variety of "observed behaviors" than I expected seem to stem from sensory issues for example. And I think it makes sense that humans might adopt a wide variety of ways to deal with for a much smaller variety of processing issues.
(Unrelated to the professional experience) Have you looked into monotropism? It's a fairly compact theory that ties a lot of behaviors together that might look like they have no overlap from the outside.
Also:
> It’s a label for those perceived by others in a certain light
Lots of people self-diagnose.