Updated: Feb 20
This post further explores the complicated notion of low and high functioning autistic people that I posted about on March 27 "High Functioning? It depends: " and it also touches on what I was trying to say in "Are Co-occurring Conditions Part of Autism?" that I posted a few days ago, that there should be support for all autistic people as we ALL struggle.
This is actually a twitter thread posted by A_Typical_Psychiatrist @AtypicalPsych whose profile identifies them as Former ER Psych now Gen Psych.
"The MYTH of #HighFunctioningAutism
For skeptics who believe an #Autistic with a job or a profession or a child or a relationship leads a life similar to a #Neurotypical (#Allistic), please read this. Also, to #AutismParents wanting an #Autistic child to grow up looking & acting “normal”, please read on.
This is a 2-hour snapshot from my fairly functional day as an #ActuallyAutistic, outwardly very “successful” #Neurotypical-appearing health professional. The following represents a particularly SERENE 2-hour slice of my day, a lot less harrowing than the rest of it. In other words, this is #AutisticMasking at its LEAST taxing.
I’m just back from a 2-hour once a week course in my neighbourhood. To even be there I had to take this afternoon & tomorrow morning off. Which I do every time I’m hoping to attend.
While the course content is fascinating, I hardly notice that because it’s all-consuming to work NON-STOP to sit still, not scratch each itch, not rub elbows with people nearby, not remove every loose hair that floats in front of my eyes, not look at every wisp of fluff passing by or every speck of dust in the air. I’m also making sure to BLINK at the “normal” rate laugh/cough/be quiet/speak at the “right” times, ask questions of the right length at the right frequency at the right time, nod & smile during my best guess for the right moments. Every 2-5 minutes I do a “POSTURE check” to ensure I’m sitting at approximately the same angle as everyone else in the room (whose faces I don’t recognize as I’m #FaceBlind) & leaning in roughly the same direction as the others.
I also remember to glance at them once in a while to appear part of “the group.” Simultaneously, I work non-stop on suppressing my stims. ALL of them. I particularly have to avoid accidentally flapping my hands or letting out a squeal. But then I notice my left thumbnail is unevenly cut. This, I cannot ignore. Under the desk I find myself stroking the edge of this fingernail for 2 hours hoping it will somehow magically wear down as it would with a nail file. It doesn’t.
I also remember to look interested in others’ questions & nod / make noises of apparent interest & remember to reposition my body once the questions are over. I constantly remind myself to look occasionally at the speaker’s face. I aim for the bridge of the nose or an ear - the so-called “excellent eye contact” that can disqualify many #LateDiagnosed #Autistics from receiving their diagnosis.
After > half a century doing this, I have honed the art of NOT looking #Autistic. I appear to “joke around”/“laugh at others’ jokes” -another apparent reason for disqualifying fellow #AutisticElders from receiving an accurate diagnosis. Throughout the 2 hours, I also work constantly to ignore every sound coming from every direction even though I’ve given speaker a microphone so I can pay more attention to a human voice (no explanation- “ambiguous disclosure”).
There‘s a brief moment of terror when the speaker announces an unexpected 5-minute break. I haven’t planned how to look “normal” when the structure is suddenly removed. I’d much rather be sitting under the table or curled up in a corner with my eyes closed, or preferably outside the room altogether, in order to better absorb from afar what the speaker is actually saying. But this would be seen as “weird” and would “out” me as an #Autistic.
I haven’t even mentioned the transitions involved in arriving & leaving or the enormous amount of help & support required behind the scenes for me to even get up, get dressed, get fed & so on. This has become an #InvisibleDisability. But to the outside world, I really look quite normal as I take my dogs for a walk, act as if it’s the easiest thing in the world, show up at work as the consummate professional or casually mention I’m taking a course. But every act has a complicated story behind it.
But should I ever DARE reveal my #ActuallyAutistic self in public, even for ONE moment, I would risk losing everything, especially my license to practise medicine, my only real link to the outside world.
No matter what we #AllAutistics end up knowing / doing / showing others in this life, I guarantee we are all “functioning” so FAR below our capabilities as to be unrecognizable to ourselves.
This is the definition of #Disability. Yet non-autistics continue to believe they can assign meaningful “functioning labels”/“support levels” & somehow quantify our #Disabilities, OUR quality of life, or even expect to DIAGNOSE us from a standard clinical interview!
I still don’t know the answer to enforcing “normalization” on an #Autistic child. I do know it’s highly unethical. And traumatic. Being forced to act “normal” erases one’s identity which has to be rebuilt later in life - if one survives. The human cost is EXTREME. We really should be accepted as we are. And allowed to thrive WITHOUT having to mask. To have #AutisticRights & #DisabilityJustice.
I really don’t know the answer to the question of what’s the right balance between being our authentic #Autistic selves & having to act #Neurotypical enough to be accepted by society. It’s only after being diagnosed with an #ASD that we slowly begin to realize that non-autistics don’t have to do any of this #AutisticMasking. Eventually we figure out that NTs actually ENJOY socializing.
Then we discover our own kind & may find that we TOO enjoy socializing, just in a different way & intensity. I usually feel completely relaxed & enjoy being around fellow #Autistics who have learned to drop their mask. I imagine that’s how # Neurotypicals might feel in one another’s presence. It’s only when we’re unnaturally forced to conform that we suffer.
#AutisticMasking to look #Neurotypical comes at an enormous expense. This is exactly why I get angry when people start throwing around functioning labels. They have no idea what it takes it how much it costs to appear normal enough for them to consider us "high functioning""
So that's the end of the twitter thread. Although I'm not a health professional it reminds me of when I worked for the federal government. I remember telling a coworker that the hardest part of my job was getting there and I think he thought I was talking about my commute. But really I was talking about all the effort it took to just show up at my job every day and act like everyone else. It was exhausting.
I would love to know what others think...please comment