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“You Must be High Functioning!” – I Don’t Have High-Functioning Autism, I am Autistic

PsychCentral says, “High-functioning autism means that a person is able to read, write, speak, and handle daily tasks, such as eating and getting dressed independently. Despite having symptoms of autism, their behavior doesn’t interfere too much with their work, school, or, relationships.”

However, to receive an Autism diagnosis (at all), one must have “symptoms” that “cause clinically significant impairment in social, occupational, or other important areas of current functioning,” according to The American Psychiatric Association’s Diagnostic and Statistical Manual, Fifth Edition (DSM-5) – the book used to diagnose Autism and many other types of NeuroDivergence in the United States. 

Being Autistic, even though I am “high functioning” (according to some), significantly limits my career choices. I do well enough in an appropriate environment where I’m’ adequately supported. Still, there are many jobs I cannot do (especially if the job descriptions are too broad and the employers are not flexible). 

I am “high functioning” (some say) because I wasn’t diagnosed until I was 29, and I “made it through school” because my “behavior” must not have interfered “too much with school” even though I was always in trouble for my “behavior” and was referred for learning disability testing (and my guardians refused it) when I was in elementary school.

Some people say I’m “high functioning” because I’m in a long-term relationship (even though my partner is also Autistic). Some will say it is because I have a few friends (who I struggle to keep up with and only see or speak to a few times each year). 

They don’t know that I spent the first part of my life isolated, unable to tell if people liked me, and unsure how to make friends or share myself with the world, or that new people still make me nervous, and the few friends I do have now do most of the work staying connected to me (because I struggle to work friendships into my life around my hyperfocused interests). My friends are patient because I can be distant and can’t take that personally.

I’m “high-functioning” in the eyes of strangers who don’t understand Autism because I can hide my struggles from the world (not inconveniencing other people with my problems or pain). 

Because I don’t ask for help, I get all the help I ask for (none).

Ironically, the more I hide my struggles, the more they hold me back, as keeping all my pain inside traps me with that pain and no remedy for it. 

If I could ask for help, I could do much better, but when I try to ask for help, people tell me I don’t need help because I am “high functioning” and not Autistic “enough” to “need help,” not like an Autistic who is “lower functioning” in their eyes.

“High functioning” is a label that means, to many people, “Autism-Lite” or Autism that is “functioning highly” (all things considered).

If a machine is functioning is high functioning, it is performing well, but people are not machines and can only thrive when they are adequately supported. Unfortunately, due to social stigmas around pain, struggle, and asking for help, many people (regardless of NeuroType) will feel pressure to hide their difficulties and problems from outsiders.

Whenever someone has called me “high functioning,” it comes right before they are about to dismiss my needs or tell me I’m “not Autistic enough” to ask for help or to share my experiences as an Autistic Person.

When people hear that someone or something is “functioning,” they think of “working or operating in a proper or particular way” (because that is what the literal definition of functioning is). 

When people hear someone is “high functioning,” they assume we’re functioning well (or highly) compared to other Autistics and non-autistic peers (even if that’s not true). 

When I tell people I’m not performing to the best of my abilities and what I need to perform better, non-autistic gatekeepers deny my requests because of the expectations that I’m functioning “highly (for an Autistic Person”), capping my performance far below what I would be capable of with proper support. 

Once I tell someone I’m Autistic (because expectations are meager for Autistic People), people suddenly become impressed with my unimpressive accomplishments. It’s then determined that how I’m “functioning” now is “enough” (especially considering my Autistic brain). 

The support I need is then denied because “high functioning” Autistics “have Autism” that “doesn’t interfere too much” with our “work, school, or, relationships.” Therefore, it is assumed that I need and deserve no help or support (even when I ask for it and explain how having support could improve my life or ability to perform).

the word support written in white chalk on a black background with white text that reads 'NEURODIVERGENT NEURODIVERGENTREBEL.SUBSTACK.COM "You Must be High Functioning!" Don't Have High-Functioning Autism am Autistic People often think I'm doing better than I am because I keep my problems to myself, and people don't notice mention my struggles until they inconvenience them.

“You’ve been able to do your job until now without support” (even though I was calling out from work once a week, was sick, wasting away, and had lost over 20 lbs (because I couldn’t eat or keep food down), and was contemplating driving my car off a bridge because my situation felt so hopeless). 

“You must be very high functioning” was supposed to be a compliment, but it wasn’t. It was a denial

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2 thoughts on ““You Must be High Functioning!” – I Don’t Have High-Functioning Autism, I am Autistic

  1. Well here’s how it works. My nephew and two of my friends’ children AND my cousin’s child all had autism or Aspergers. You have skills they don’t. People without autism have various challenges in life — I have a son with Downs who is pretty “low functioning in the language dept.” ALL of life and circumstances are relative. That’s it. That’s the big take away on life. Everyone has challenges that to them are unique and most of us don’t have gratitude enough for what we do have. And that goes for everyone on this planet. We all including you have to make ourselves into the best we can be given the cards we’ve been dealt. In that way, you are no different than anyone else. We call know people we THINK have it better (though we don’t know because we don’t walk in their shoes) and we’re pretty sure we see people who have it much worse. Accept how you are and forget what the FUCK people are saying to you at ALL. Do the best you can with your life. Be all you can be. You cannot compare yourself with anyone else. Someone you’ve assessed to have an easier life might have challenges worse than yours. Why don’ t you refuse to define yourself in terms of this disability. Let it go. And deal with your challenges as if they aren’t that different from anyone else’s. Let it go, at least let GO what anyone else thinks about your “functioning.” who the fuck cares. You are a person like anyone else with unique talents and unique challenges. Period.

  2. Wow – if Lynnfay73’s response isn’t the most ablist bull&^E%T that proves just how necessary it was to write this essay! Thank you for this essay. It helps me articulate similar struggles.

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