A favorite talking point of some self-proclaimed “autism parents” is that self-diagnosis of autism by Autistic adults isn’t valid.
On the surface, this seems like a somewhat reasonable position to take. After all, there are professionals who are trained in how to know whether someone is Autistic or not. What could be the harm in requiring some confirmation from an expert before recognizing that someone is Autistic?
Great harm, as it turns out.
Requiring a formal autism diagnosis ignores certain… inconvenient issues.
Ironically, some of these issues, like the ones I’ll discuss below (which are far from a complete list of issues we face when being evaluated), are also held to by the same sorts of “autism parents” who think requiring an official diagnosis is important (or even confers autism-hood to someone, as if those of us fortunate enough to have an official diagnosis weren’t Autistic prior to our official diagnoses).
Autistic people tend to be disabled. The very people who insist that we aren’t “disabled enough” to be Autistic are often the same people who insist that we need to be officially diagnosed. This means that they expect our Autistic disabled selves to be able to:
- Make enough money to access an evaluation.
- Navigate the evaluation process, which includes doing things like making appointments and arriving at the appointments on time. Maybe requiring a car ride/drive because providers who evaluate adult Autistics tend to be few and far away.
- Somehow manage the rest of our lives while making the money and going to the appointments. I mean, some of us got married and had children before we realized that, oh wow, most people don’t have to prepare themselves for weeks before taking a mundane trip to the bank.
- Manage all of this extra stuff while we’re already struggling enough that an autism evaluation has been suggested to us by someone or other in some way or another. Given social conventions and a pervasive stigma against autism, an undiagnosed Autistic adult has to be struggling a LOT before most people are willing to suggest, “Hey, maybe you should be evaluated for autism!”
I was constantly exhausted for a good solid year after my evaluation and diagnosis. The evaluation process is fatiguing for many (maybe most) of us.
All that remembering and talking takes a toll (and that’s even once you’ve somehow gotten to the appointment that’s probably many miles away from where you live and maybe you can’t drive or can, but it’s anxiety-inducing to drive in new places and if you do have children, how will you pay for childcare for them while you’re being evaluated? What about if you’re working — also tends to be exhausting for us — and have to somehow manage to be evaluated in between working while not getting fired for being out too often because maybe the boss says it’s okay and you believe them, but actually the unwritten rules are that you’ve been out too many days already due to struggling and needing mental health days since it’s all so damned exhausting and meltdown-inducing to begin with…).
Autistic people tend to be discriminated against in our society and those of us with children risk losing our children if we are publicly and officially Autistic. I have had numerous friends who’ve been threatened with losing their children due to being Autistic themselves.
So some undiagnosed Autistic adults are unable to seek a diagnosis lest they be correct about being Autistic and potentially lose their children.
Still More Issues:
By the time we’re adults many of us have been socially punished to the point that we’ve gotten so good at “masking” that sometimes even skilled evaluators cannot tell we’re Autistic until we’ve done a significant amount of personal work to “unmask” ourselves (another exhausting, and sometimes traumatic, task).
In that case, instead of being diagnosed (accurately) “with autism,” we often receive well-earned diagnoses of anxiety and depression instead. Sometimes we (especially femme Autists) get misdiagnosed with Borderline Personality Disorder or Bipolar Disorder — diagnoses that are less than helpful when incorrect.
Furthermore, many of us have had such negative experiences with healthcare workers (mental health included) that we are reluctant to see mental health professionals even if we desperately need support.
The idea that all Autistic people are (or even can be) #DiagnosedAutistic is ill-conceived and ableist.
In order for universal diagnosis to be reasonable and expected, both the system and our society have to change enough so that the above issues aren’t issues any longer.
Otherwise those of us who are too disabled to manage the above without significant help and who don’t have that help, are considered to be not disabled enough to be Autistic (because no diagnosis), but the reason that we’re considered not Autistic is because we’re too disabled/Autistic to achieve the steps needed in order to be considered “officially” Autistic.