Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Thursday, May 3, 2012

Functioning Labels

Trigger Warning:Ableism, Passing description of self-harm

Yesterday at the #autismchat, one of the things I said was ``High functioning means your needs get ignored. Low functioning means your abilities get ignored." I am by no means the first person to say something like this. Over at Autistic Hoya, there is a good cartoon about functioning labels. I think that over at Just Stimming, something along these lines has also been said. Cal Montgomery criticized a lot of the ways they're used in a movie review back in 2005. And of course, every time someone assumes high functioning/Aspergers because someone blogs, this gets brought up. It gets brought up because it's true.

I have traveled foreign countries alone, and done so competently. That doesn't mean I'm not Autistic. It means that the skills I have allow me to do that. I don't catch a lot of non-verbal communication. That's a skill I don't have so well. If the situation I face is needing to figure out how to get from point A to point B by public transit, I am in good shape. I'll function GREAT. If the situation is a crowded gathering where I need to politely interact with people, I might manage the length of the party (or I might not.) Then I go home and shut down. My functioning in that area is kind of cruddy.

How do you define high and low functioning? Is it by how easy it is to make an independent living arrangement work for that person? (what if the person never had a reason to live alone/independence is a myth anyways, but certain kinds of dependence are seen as natural) Is it by ability to navigate from point A to point B safely? (what if the person works from home, uses PeaPod, and doesn't need to go places alone?) Is it on being able to drive? (what if the person never had money to buy a car and try to learn, or if the person lives in a city where driving isn't needed?) Is it by ability to handle social situations? (what if the person just doesn't care?) Is it by ability to speak (sign language/typing/AAC anyone?) Is it by ability to blog? (That doesn't imply being able to drive, live alone, or speak, by the way.) Is it by whether or not the person has any self-harming or dangerous stims? (I pick at my skin as one stim, and yes, I've drawn blood. I have also banged my head against walls, though I've not done so hard enough to cause permanent damage.)

Is it by when someone learned to talk? (Once talking has been figured out, you apparently can't actually tell when the person learned by way of other traits...) Is it by the history of any other traits? (But wouldn't that mean that we're assuming the person's skills to be static? That's just not accurate.) Is it by IQ? (Does IQ even really mean anything useful anyways? It's history is basically a mess of ableism.) Is it by what society thinks we should be able to do? (what do they want, anyways? Also, society is made of fail sometimes.) Is it by what WE think we should be able to do? (We're not going to agree with each other... And it's not as if people listen to us much. They should, though.)

So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I'm high functioning, you just ignore the weaknesses, and if I'm low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!)

Edit: A translation of this post into Chinese can be found here.


  1. I actually wrote a college paper on that very thing: why HF and LF are not good "labels" and I hate it when I see people saying that is the TYPE of autism their child has. It's not a diagnosis. It's a judgment. And subjective as all get out.

      And maybe cite it in my neurodiversity paper I'm writing for Chinese because that's more formal than blog posts.

    2. I would like to read that too. Could you please post it online and post a link here? Thank you!

  2. Honest question - what is it about coping with social situations that makes you go home and shut down. Is it an emotional reaction to feeling that you might make mistakes and be judged because of it, is it simply exhausting to have to try to function in such a challenging environment, is it a cultural message that if you cannot function adequately (I have no definition for adequate) in that kind of setting that discourages and defeats your ego. Several people in my family are introverts who react similarly whereas I am an extrovert and I probably don't really do the whole social cues thing that much better than they do but it doesn't leave me feeling distressed to the same degree. I am trying to understand and learn more about autism.

    1. Ooh I like that question. I think I'm going to be long-winded, so that's tomorrows post now.

    2. Personally, I also do the exact same thing. I have Asperger Syndrome, and I constantly find that I have what you might call a "limit" on how much socialization I can handle. Frankly, I think it somewhat depends on your personality (introvert vs. extrovert, stuff like that), but it's tiring. Even if I am sitting the entire time I'm at a party, I feel physically fatigued from having to be social.
      For example, yesterday, my boss had her retirement party, which was really fun; we all got the opportunity to tell funny stories from work, we all got little thank-you gifts, and my co-worker whose family owns a bakery brought a huge, rich red velvet cake with cream cheese frosting, which was delicious. But even though I only stayed at the party for two hours or so, when I got home, I felt as if I had just run a marathon. Considering the fact that I knew most of the people at the party and that we had worked together for years, and the party was small (no more than twenty people), I felt so "socialed" out that I basically fell asleep about an hour or so later - the party ended at 8, and I was out by 9:30. Meanwhile, a bunch of my other coworkers stayed at the party for a while longer, and then some of them went to a restaurant afterwards for drinks.
      I think part of it is because I am an introvert at heart, but I think my Asperger's also contributes to it.
      I hope that answered at least part of your question.

    3. Sorry I'm a year late on this, but out of curiosity, when you feel "socialed out" after a party, is that a result of just being in presence of other people, or do you constantly feel the obligation to interact with people even if you don't want to? Or is it that you enjoy interacting with other people but it also tires you out?

      I ask because I also have Aspergers and am extremely introverted, and I've heard this described by several other people, but I've never experienced it myself; the worst I feel at parties or other social events is just bored. One explanation is that I'm simply different from some introverts (and it's quite possible that not feeling this way would be quite common among introverts and people with AS, since it means being the same way as neurotypical people nobody would write about it).
      Alternatively I suspect it might be a difference in the way I act, like that I just tend to be far less polite than the average introvert and don't interact socially to the point that I would notice my energy going down, or something along those lines.

    4. I'm extremely introverted but have no formal diagnosis, but I get the "socialed out" feeling as well. For me just watching/listening to other people in a social setting isn't too tiring, I can easily to that for several hours without burning out. In that state I'm just receiving information and can focus my attention on that. What I find more tiring is actively engaging in conversation because my attention is constantly switching from listening and processing to what the other person is saying & feeling to thinking about what I'm going to say and how I'm going to say it. It is the constant switching of attention that tires me out (similar to if I'm trying to work on multiple projects at the same time at work).

  3. Traci: from another autistic, I really appreciate the sincerity of your question. I do hope you come back to read the answers! Alyssa: excellent job!
    Thank you!

  4. "If the situation I face is needing to figure out how to get from point A to point B by public transit, I am in good shape. I'll function GREAT. If the situation is a crowded gathering where I need to politely interact with people, I might manage the length of the party (or I might not.)"

    I'm the exact opposite. Bus routes horribly confuse me. I struggle even with a highly familiar bus route. With an unfamiliar one, I'll be hyperfocusing the entire time to make sure I get on the right bus and off on the right stop, and even so I often screw it up.

    Parties, on the other hand, are simple. I just ask a few questions to figure out what interests the person, and then monologue to them about that. Or just monologue about anything, and they act interested. Plus mention my autism around 5 minutes into every conversation, so they know that if I'm inadvertently doing something wrong, it's because I have a disability. I end up having mostly the same conversation with each person, and having plenty of fun the whole time. Unless it gets too noisy, then I go hide in a corner.

  5. Would you consider editing this post and breaking it into smaller paragraphs? It's a bit hard to read right now.

  6. This interests me, because within the caretaking/activity based community we generally use high/low functioning to simply indicate how much one-on-one care an individual would need to successfully complete/participate in a given activity. It generally indicates to us whether or not the person is a "runner" (a problematic term I'm not fond of), if they are non-verbal/communicative in any significant way, or simply if they just need someone with them at all times in order to remain safe and accounted for. I can't say I'm for the use of high/low functioning outside of a programming world, but if you have 30 seconds to give someone a base indicator of what to expect out of an activity (or what type of activity to plan), I have to say it has been helpful. Do you have any suggestions on other ways to communicate such things quickly and efficiently? Unfortunately efficiency tends to strip people down to base levels that generally does not represent them as a whole.

  7. Functioning level is also determined by personal biases/preferences. Someone might find me lower-functioning because I can't do quadratics in my head or higher-functioning because I have a high verbal IQ.


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