The most widely-used and well-researched standardized assessment for a variety of mental disorders is the Minnesota Multi-Phasic Personality Inventory, or MMPI (link to decent Wiki article). The test was developed using empirical data, “with clinical scales derived by selecting items that were endorsed by patients known to have been diagnosed with certain pathologies”.
In other words, the experts asked the patients themselves.
Then, those experts compiled the data (the patients’ answers/statements), and distilled them down into a widely-used, highly-respected diagnostic test.
That makes perfect sense to me. Firsthand information can be some of the best information.
But these developers did this…even though the patients were considered (by conventional standards) not to be of sound mind.
That doesn’t change my “that makes sense” verdict; it still makes sense to me to develop a test this way.
What doesn’t make sense to me is that nobody has bothered to do the same for people on the Asperger’s/autism spectrum.
Generally speaking, we are of sound mind (i.e., Asperger’s/autism in itself is not a mental illness).
The reason I even bring up the mental illness assessment is this: the conventional establishment largely disbelieves and discounts any statements made by the mentally ill. Their logic is that these people are delusional, hallucinatory, cannot distinguish reality from imagination, sometimes cannot tell right from wrong, and thus, everything they say holds little meaning, is suspect, and must be scrutinized. (Again, this is the prevailing mindset, not my own.)
And yet, these same “experts” who denounce the words and statements made by the mentally ill actually used those same words and statements to formulate an official diagnostic assessment tool.
And yet, even though Asperger’s/autism is not a mental illness (meaning that we’re considered of sound mind and thus, our words and statements are conventionally credible)….
…we aren’t extended the same courtesy.
When developing diagnostic criteria for Asperger’s/autism…
….No One Asked Us.
The so-called “experts” simply wrote down what they saw….
….through their own (human) lens. No human lens is perfect. No human being is without bias.
And so, our diagnostic criteria are based only on observation of our outwardly displayed behavior, as seen through their own imperfect lens, and that’s all that went on record. That’s all that became “official”.
My question is, why? Why weren’t we extended the same courtesy? Why weren’t we given the same respect? Why did everyone, along the way, fail to ask US?
They could have asked us what we were thinking. They could have asked us what we were feeling. They could have asked us how we experienced a particular situation or phenomenon. They could have asked us what life was like. They could have obtained our back stories. They could have examined us more fully. They could have written better-detailed descriptions. They could have paid attention to the whole person. Just like they did for the mentally ill.
But they didn’t. The diagnostic criteria are loaded with psychiatric medical jargon, which is limited to only what they could see, without having obtained any input from us. Those criteria are written from such an egregiously outsider perspective that even if one nails each of those criteria perfectly, the criteria are almost unrecognizable. It can be difficult to translate those criteria to real people. It can be hard to imagine what those criteria look like in every day life.
We get ignored. We get overlooked. We get forgotten.
Why is this? Many of us can indeed communicate. We can indeed understand and comprehend. We can indeed express ourselves. Many of us are of average or higher IQ and many of us are verbal. Many of us are quite competent. And if Asperger’s/autism is “all” we “have”, then we’re certainly of sound mind and thus, can be “trusted” (again, according to conventional thought).
So why has No One Asked Us?
Why is there so much written and produced about us, without us?
The overlooking and ignorance (of us) continue today. We all remember how, this summer, the infamous and uninformed Time Magazine article on internet trolling from this summer (link to my post on this topic) slurred Asperger’s in a severely damaging way, with barely a stout “regret” of the “error”.
Most of us are already trying to forget movies like Vaxxed (link to critical blog post on a personal blog) and The Accountant (link to The Establishment’s excellent article by Alexandra Haagaard), the latter of which only sought input from Autism $peaks, which is hardly a friendly–or even knowledgeable–organization (if they were, they wouldn’t call autism a “monster” or try to eradicate it).
Or what about Life, Animated (link to NY Times’ in-depth human interest story), a film that, from what I can gather so far, seems to me to focus too much on the family’s perspective and neurotypical values like eye contact and speech, and too little on Owen’s accomplishments as an adult (not to mention that it smacks of inspiration porn)? At least Life, Animated didn’t fearmonger (that I could see).
Or what about the recent law enforcement fiascos involving police officers committing enormous transgressions against the autism spectrum community? (A Google search for “autism police brutality” yields over 403,000 results.) So far, to my knowledge, only a handful of police departments have reached out to the Asperger’s/autism spectrum community and who do they turn to first? None other than Autism $peaks, of course.
Is anybody sitting down with Actually-Autistic/Aspergian people, talking to us like human beings, and taking to heart (and to record) what we say?
Is anybody showing us any of the respect that we have no reason not to receive?
I haven’t heard of any such miracle (yet). And I’m trying to make sense of it. But I can’t seem to be able to.
The phrase No One Asked Us ran through my head (and out of my mouth) so often that I started a Twitter hashtag a few months ago. Because I’m not exactly the most compelling, charismatic trendsetter (I never seem to quite fit in wherever I am; I must have thorns on my sides or something (lol)), it didn’t “take off” and go anywhere.
But maybe it will someday. Maybe it hasn’t yet because it was too cryptic or vague, and no one knew what it meant or felt like they could relate to it. Maybe this post will change that.
From the official diagnostic criteria to popular culture and mainstream media to something as paramount as law enforcement, neurotypicals are doing all the yakking, hollering over our heads and behind our backs.
And we can’t seem to get a word in edgewise.
I hate to bitch without offering a solution, so I’ll go ahead and do so. And it’s a simple one.
That is all.