From the outside, I have a pretty good handle on my life. To put it in Millennial-ese, I am good at adulting. I hold a BA from an elite college and I am currently a full-time graduate student. I live in my own New York City apartment with my rescue cat. My house is (usually) clean and tidy and I enjoy cooking nutritious meals. I pay my own bills and have a part-time remote job. I travel internationally by myself and speak two languages. I answer my emails on time and have healthy personal boundaries.
In light of this list, it’s easy to see why people think of me as extremely high functioning for an Autistic person. I know well that there are many parents of profoundly disabled children who would give anything to have their child’s future look even slightly like mine. I know that I am lucky in many ways; I had a car before I moved to the city, and it was not lost on me that even many Autistics labeled as high-functioning cannot drive.
Even by neurotypical 24-year-old standards, I am considered highly independent and mature. Why, then, am I so insistent against being called high-functioning?
Largely, it’s because the problem is bigger than me. Functioning labels are bad not just for me, not just for Autistics as a whole, but for everyone.
Despite this question’s larger implications, I believe that impactful change comes from the ability of brave individuals to speak about themselves. So, why don’t I call myself high-functioning?
Most simply, I’m not.
I struggle dramatically with functioning compared to my classmates, and always have. I was one of the most gifted in my grade school class, but pulled some of the worst grades in my honors program. I very obviously struggle with punctuality more than any of my graduate school classmates. Those ignoring this gap are thieves who come in the night to steal words from my mouth. A lifetime of being called high-functioning plunders me of ways to explain to my professors why I forgot to do the homework again. If I’m as high-functioning as people are wont to call me, then it must be my own moral failing that results in my performance gaps.
From the inside, my struggle to function in a way that befits a graduate student is constant. I require extensive academic supports and almost failed out of college twice. No one thought I would get this far. I have nearly no concept of time and cannot anticipate how long something will take to do or be expected to show up anywhere on time. I have a limited amount of bodily safety awareness and often run into the street when there are cars present. I become easily confused and overwhelmed when it comes to navigating public transport, to the point of frequently ending up in the wrong city or even county. I cannot follow multi-step verbal instructions. When I’m not in school I often forget to eat. I have poor gross-motor skills and fall easily; I cannot descend stairs without a handrail. I always remember to feed my cat but often forget to scoop his litterbox. I am extremely sensitive to noise and often use socially inappropriate coping mechanisms to deal with this: just this weekend I threatened to throw vegetables at several people who were speaking louder than I could handle.
High- and low-functioning labels are a false binary of epic proportions. As can be observed above, a much more accurate metric would be to talk about inside and outside functioning.
———–
We have now arrived at the ultimate falsehood of high-functioning autism: what this label really means is that you have high outside functioning. I am excellent at pretending to be someone I am not.
This is also called Autistic masking: replicating expected social norms as performed by those around you in a desperate attempt to be normal. Autistic girls and women tend to be especially good at crafting their masks, directly leading to a dramatic disparity in diagnostic rates between girls and boys and far more dire mental health consequences for Autistic non-men. My diagnoses of anxiety and depression are extremely common amongst so-called high-functioning Autistic females.
Let’s be clear: functioning labels suck for all Autistics. Those labelled low-functioning are presumed unintelligent and are often denied access to communication and any type of personal consent. This must also constitute hell. I can’t speak about this experience as it is not my own, but I can promise that being a highly-outside functioning Autistic woman is more exhausting than I will likely ever find words for.
This life is a constant performance: Autistic females notoriously suffer from intense self-criticism and low self-esteem (thankfully, I only experience the former). How could we not when we know that we are totally alone in the reality behind our masks, the ones who are left to swim the waters between the brilliant and independent woman that everyone compliments and the person who can remember to eat or do her homework but not both? When people know you are smart, you have no excuse for fucking up. Any tear in the mask threatens to bring doubt upon your abilities, to make people wonder if you’re really cut out for graduate school. Remember, you still have to be hired after all of this.
Certainly, many Autistic men have similar experiences of performing to expectations. However, the experience of being female under patriarchy constitutes a mask all of its own. Double so if you are queer. Triple so if you work in a male-dominated field. Multiply ad infinitum if you are Autistic. Girlhood and womanhood are complicated for women of all experiences, often demanding that a woman contort herself into a pretty package that is feminine but not indulgently so, confident but not bossy, nurturing but not desiring of nurture. Autistic womanhood demands that I be perfectly female and perfectly neurotypical, while knowing how to do neither.
———–
Because you’re a rabbinical student, you need to be knowledgeable and socially perfect. Because you’re a female rabbinical student, you need to do both of those things twice as well as your male colleagues to be taken half as seriously. Because you’re queer you need to mention that you’re gay frequently enough to be interesting, but not so much so that it threatens your being seen as professional. Because you’re Autistic, you have to spend the majority of your mental energy just remembering that all of the above are things expected of you, let alone actually meeting those expectations. The very last dregs of mental energy, if they exist, can go towards your actual personality and interests.
Because you’re high-functioning, you have to remember to occasionally act Autistic so that people believe your diagnosis.
Because you’re high-functioning, you can’t act so Autistic that it actually impacts the way people see you.
Because you’re high-functioning, it’s your fault when you forget your mask at home.
And because you’re high-functioning, you don’t have any significant challenges relating to autism….remember?
Contact: volz519@gmail.com
- Why I’m Not a High-Functioning Autistic - October 6, 2019
19 Responses
This is such a well-worded article. I tell people I’m exhausted so often that no one believes me anymore. The mask is true; and not wearing it so people believe me; and when I am too tired to wear it in public I am made to feel I owe everyone an apology. Thank you so much for verifying how I live – inside vs outside.
“nurturing but not desiring of nurture”. ooph, that’s a tough one.
Perfect! I can relate because I have a master in theological studies (wanted to study Old Testament and Hebrew more.) getting there’re was hard and you can only mask so far. And functioning labels just end up causes a problem.
When I wanted my daughter to be tested, my husband had the same comment on labeling. My daughter, son and I (all Aspies) are finding that it’s easier for people to know. They give us more leeway so we don’t have to worry so much about masking.
I had the same problem when I wanted my daughter tested. My husband didn’t want the labeling either
. When I told him about my childhood thru high school years, he finally agreed. Now (15 years later) I know that 2 of my 3 children have it along with me.
My life in a nutshell, thank you. I have been teaching full time secondary for 20 years and am utterly burnt out & exhausted from masking and failing to cope
Article worth bookmarking and sharing with professionals.
To complete the list of intersections toward the end of the article: being non-white presents a burden of presenting ‘acceptable’, ‘non-ethnic’ enough to white people, and having a (hidden) disability likewise.
Oof as someone born MALE and getting bullied for not being able to “mask” , it’s fun.. I love how people born male are the failures at that. the ones instantly assumed to be autistic and bullied to hell, the opposite kind of exhaustion. I hate it… I don’t get meltdowns. never had one or barely, i don’t get exhausted for masking (well now i do in my mid 20s bc i learnt how to mask finally…) but back as a teen I was bullied and such, however now with my (fucking finally) masking.. and such I may look high-functioning with being able to drive a car, very sociable at work and doing easy eye contact. (i decided one day to mask the fuck out of that) … rest is miserable. i can barely take a shower or clean my room lol
It’s sad there’s such a gap between gender, both male and female should have been masking equally… maybe i wouldn’t have been bullied so much for being “different” i wanted to give up on life.
Very good article though.
I’m sorry it’s been hard for you. That’s not fair at all.
What’s scary to me is when the mask slips, and suddenly people are suspicious and think I’m trying to trick them somehow. They don’t trust me and look at me like I’m crazy. Then the rumors start. I really feel like people are dangerous.
Be thankful you live alone. Taking my pursuit of normalcy so far as to have a family means that I’m expected to mask even when I’m at home, and I just can’t do that anymore. So now I’ve just given up on having anything like a comfortable relationship with the other people in my house; I try to ignore them and live as if they weren’t there.
It doesn’t work, but at least I no longer need to exhaust myself all day every day.
I’m so sorry you have to live this way. I know we’re not the same so please don’t be angry with me. When my children were in their 20’s, I individually told them I wasn’t going to mask anymore. They each told me that I didn’t mask when they were growing up. I think I couldn’t mask at home because I didn’t really know who I was supposed to be. I really hope there is a chance you and your family can work together to be comfortable. Have a room in your home that is just yours (I do), or let them know when you can’t do it anymore. I hope you can end up being ‘okay’ and comfortable in your home. And I really am sorry you aren’t. I can’t imagine living that way.
I’m in tears ❤️ that’s exactly what I am and what I feel… It’s so to the point. Incredible. And I wanna hug you so much for your words… I never could describe this so exactly as you did… Thank you so much ❤️😘
Thank you very much for this wonderful blog text. I posted it on our German autism page because your text is like a ‘landing on the spot’. I am convinced that there are many autistic women in it, men certainly too, but all this is a very clearly female phenomenon.
This is so like me. I’m s chef, at work I can easily run a fine dinning kitchen, with a brigade of 10 chefs under me, and feed over 400 people a three course meal in about three and a half hours. Yet at home, I have to employ a PA to make sure my laundry gets done, my bills are paid, and all those other household things that just do not occur to me.
Do autistic people have trouble driving? This is the first time I see it mentioned but it’s one of the first things I searched for when I thought I might be autistic. Driving is extremely exhausting to me and I avoid it at all cost.
I used to live in Los Angeles. I have lots of memories of driving along Ventura Boulevard (the main drag in the San Fernando Valley, aka ‘The Valley’). I often found myself wondering how it was even legal to have so many bright signs (many of them blinking or animated) along a road. It was only after I was diagnosed as autistic (years after leaving LA) that I realised that most people just filtered out those signs, but I couldn’t.
In general I am a really good driver, but I do have moments where I am struggling with too much sensory input. I can easily see how other autistic people would either not be able to pass a driving test, or would choose not to drive because it is too exhausting.