Intro: #HighFunctioningMeans – and its siblings, #LowFunctioningMeans and #FunctioningLabelsMean are trending on Twitter right now. For insight into what neurodiverse people really think of functioning labels, I suggest you check those tags out. I participated in the hashtag, and in my usual verbose way, I realized that I’d completely flood it if I posted all that’s in my brain, but I’m perseverating on it so I decided to turn it into a post.
Content note: There are some offensive views I’ve written about in a first-person sense for reasons of satire. Content note for ableism and abuse.
Hello, and welcome. I have some good news and bad news. The bad news is that you’re disabled. It’s a developmental disability, not unusual that we didn’t catch it earlier. The good news is that we didn’t catch it earlier because you’re what we call “high functioning.” Let me explain what that means.
High functioning means that you will always be disbelieved when you disclose. It means that you will be met with gasps of “But you look so normal!” and “But you don’t seem like a r*****!” It means that people will call you a fake if you’re having a good day, and also if you’re having a bad day. Because “real” disabled people are equally disabled all the time. Or, at least, that’s what people think.
High functioning means that you count for fear-mongering statistics but not when you want to share your experiences. It means that I almost think of you as a person when you’re agreeing with me, but not when you disagree. It means you will speak hesitantly and warily, bracing for the dismissal of “Oh, but you’re very high functioning, so of course you think that!” or of “You’re not like my child! My eight-year-old can’t do what you can as an adult, so what do you know?”
High functioning means that your struggles will be ignored and disbelieved, and when they’re admitted, they’ll be thought of as your fault for not trying hard enough. High functioning means endless lectures on the importance of effort and a good work ethic. It means being taught that if you just put in enough effort – regardless of the cost to you – that you can become a real person.
High functioning means that your peers will be allowed to bully and abuse you with impunity because how else will you “learn” not to be so weird? It means living under the constant expectation that you will police your behavior perfectly, and getting yelled at for every fidget and twitch. It means people with loud voices and grips like thorn bushes wrapped in iron forcing you to do things you don’t want to do, things that hurt – but it’s not abuse, it’s therapy.
High functioning means you don’t have any of the problems that those low-functioning people do, and if you say you do, then obviously you’re lying. High functioning means you will hide and cover up those “low functioning” problems, lest I decide in my infinite wisdom that you’re not high functioning after all, and take away your independence and freedom. High functioning means you will always walk the tight rope between burnout and dehumanization. Don’t fall.
High functioning means that you will be taught that it’s your job to compensate for your deficits, even when accommodations are supposed to be made available. It means that you will have to fight and struggle to get any help at all, because you’re not really disabled. You’re high functioning, after all.
High functioning means that your triumphs prove you’re “not really disabled” while your challenges prove that people like you don’t belong here – at work, at school wherever. High functioning means that your success are fluke things that telling others about would give “false hope” to parents of autistic kids, but your failures reflect on all autistic people. High functioning means no matter the topic of discussion, you don’t count, unless it’s about how you and people like you are terrible things to be gotten rid of.
High functioning means that by expressing your frustration with the above, parents of people like you will derisively call you the “sunshine and rainbows brigade” and accuse you of trying to sugar-coat things when you talk about positives of being autistic – and accuse you of hating them when you talk about how other people have and continue to hurt you. High functioning means not ever being allowed boundaries as a child – saying “no” is rude, and rudeness is a behavior. High functioning means people asking you as an adult why you never stand up for yourself.
High functioning is an adult graduate student hiding a meltdown in a bathroom because their officemate has a squeaky chair. It’s a prolific writer who has trouble keeping an apartment because they forget to pay their bills. It’s a call centre worker who goes home and sleeps for 12 hours straight because dealing with people is so exhausting and they don’t know why.
High functioning means alternatively being the trick pony, the pity object, and the unwitting slapstick comic. It means condescension about all the things you “don’t understand” as someone who is not you tries to micromanage your life. It means pointing out the condescension is met with criticism for your lack of gratitude rather than reprimands for another’s interference.
High functioning means society hates you for existing and resents your very presence, but don’t you dare point that out. High functioning means you’re disabled enough to have real challenges, but not enough to get any help. High functioning means you don’t get a seat at any table – abled people say you’re not normal enough to be normal, but not disabled enough to be disabled. High functioning means being expected to view this calculated divide-and-conquer as a compliment.
High functioning means whatever we want it to mean. Good luck.
Reblogged this on my spanglish familia and commented:
This brilliant blogger is on the autism spectrum. I see a parallel between autism and bipolar disorder in terms of stigma, expectations, assumptions, neurotypical people’s response to our existence etc. This blogger sets a strong example that those of us with “disabilities” need to be clear about what exactly we need to be successful as individuals and not as “low-functioning” or “high-functioning”; labels that are too vague and inaccurate to be helpful.
This is a great article from a valid perspective.
You don’t look sick or you don’t seem disabled. Two very common statements that hurt. People need to think before they speak. Well said.
my brother is considered high functioning and honesty behind this post is tear jerking. well done.
Reblogged this on Essential Oil By Young Living and commented:
This is an awesome blog on the struggles of being labeled “high functioning” on the autism spectrum scale.
Reblogged this on howitbegins.
No absolutes and my pain is “not as bad” as it should be to qualify for some help to just keep my home from one step before qualifying for Hoarders — merely due to dust and yuck– but too much pain to hold down a full time position at some awesome law firm helping yet another corporation get out of paying taxes they should pay– gag. Well done post.
As a teacher of those on the spectrum I am particularly worried about the long term for those on the “higher end of the spectrum” for so many of the reasons you mentioned. Great post.
Reblogged this on schizoaffectivegirl and commented:
So true. The curse of being incredibly interesting.
Thank you for sharing. I have a daughter with autism (low functioning – and with epilepsy as well) and a son who is high functioning. There are a lot of misunderstandings around my son because of the differences – he “can’t possibly be” on the spectrum or he’s “just being difficult.” It is certainly a challenge.
Reblogged this on malindabrown1212's Blog.
Nailed it, Thank you for such a way that now I can relate to how my son feels
Reblogged this on Hoist Me Out and commented:
“High functioning is an adult graduate student hiding a meltdown in a bathroom because their officemate has a squeaky chair. It’s a prolific writer who has trouble keeping an apartment because they forget to pay their bills. It’s a call centre worker who goes home and sleeps for 12 hours straight because dealing with people is so exhausting and they don’t know why.”
Describes a lot of my life, so much. How it made no sense to me that I couldn’t sustain “being a grown up”, even though I was supposedly intelligent enough (a little above average, at least), and had studied enough.
Great post – it was wonderful to hear some articulate things I have experienced – thank-you!