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Tuesday, December 6, 2011

Functioning labels and meaning

This is going to be a short post; I've written a more extensive article for the Autism Women's Network on this that I need to just finish editing before it goes up.

Most to the time when I come across the terms high-functioning and low-functioning, they are used as descriptors for Autistic people, whether well-meaning or as a way to dismiss Autistic opinion. However, at the time of writing this, the last time I had it directed towards myself directly was in a conversation just a few days ago at a store I go to on a weekly basis. For context, the staff at this store know I am Autistic, ADHD and some of my various other disabilities. They also know that quite a few other regulars also are on the spectrum and have disabilities.

I was talking with one staff member and the topic of disability came up, Autism amongst my family members in particular, and how some of them aren't diagnosed even though we're pretty sure they're on the spectrum, with some comparison to my own rather belated need for a diagnosis. In response, the staff member replied "well, you're pretty high-functioning yourself, right?"

Knowing that she didn't know how quite loaded that term is for me, and she didn't mean to step into the "but you don't look disabled" fallacy, I attempted to explain it's not a constant state (I don't know about how well I came across; i had a migraine and had just worked a 7-hour retail shift, was hanging on with the last of my batteries and my last remaining spoons). As I did so, I came to understand something, what people really mean by high- and low-functioning.

It's not about vocal skills or IQ scores, as I've seen proposed in the Autism communities, or frequency of symptoms and self-harming behaviour, as defined by the Global Assessment of Functionality. It's about visibility.

Think about it; that's what really is meant when people label functioning status to disabled people, the level in which the disability is visible to other non-disabled people. A person like myself, whose disabilities are largely invisible due to the nature of my disabilities themselves and the work I put into surviving outside my safe space, is more likely to be automatically considered "high-functioning". This is because unless I let people in and show others my private life, my daily struggles, the moments where I'm not working on "passing", people have no idea how much that label is inconsistent with my actual reality and a lot of times, a lie. In the paraphrased words of a few of my friends "it wasn't until I lived with you that I fully understood the impact and implications of what you told me what your life is like; until then, I thought I knew, but I didn't."

Autism is already an invisible disability, being that by clinical definition, it is a developmental disorder, a mental disability, not a physical disability. This means that unless we are very visibly Autistic, most people have no idea that we're disabled. Someone who is highly visible as being Autistic is more likely to be considered "low-functioning", and treated with all the stigma that entails, due to sheer ignorance. There is, of course, problems with both scenarios, based on assumptions made about disabilities in general and functioning labels on specific.

As part of the Autism and Disability rights movements, I think we should be correcting the terms. Let's call out the fallacies in functioning labeling, and call it what those descriptors really mean, highly-visible and highly-invisible disabilities. This way, not only are we rejecting the assumptions made about us, but we're also confronting ableist attitudes hidden in the words used to describe us. It makes clear that what they're using to divide and label us is false and superficial and makes it uncomfortably clear on what they really mean. Maybe then we can change more minds on how they treat us.

Edit: Of course, there are problems with the terms highly-visible and highly-invisible, in that there are also times when someone is more visibly disabled than others.  This certainly isn't going to be the ending solution to the problems with high-/low-functioning labels.  However, I think it's a step towards confronting non-disabled people on what exactly they mean by those labels and the underlying attitudes that are expressed.   It's a step towards addressing the ableism behind it, so that we can work on descriptors that are more accurate and are still respectful of every disabled and Autistic person. 


  1. A fascinating viewpoint. Thanks for writing this, I think you've hit on something.

  2. I can't speak for anyone other than myself, but I tend to see "functioning level" as a indication of independence.

    For example, a person with "high functioning" autism is capable of living on their own, holding down a job and performing tasks that most of us take for granted such as preparing meals and using the toilet. Certainly not without it's struggles or to insinuate it's easy but to be able to do it at al.

    While a person on the "low functioning" end of the spectrum will always be dependent on someone to provide for them, to prepare their meals, change their diapers and so forth.

    So in the case of your visit to the store, the fact that you live on your own, you visit the store on your own, you make purchases with your own money and can maintain a dialogue with those people, they could assume that you are "high functioning" in the sense that you are able to be an independent woman.

    Again, I speak only for myself in the way I think of the terminology when/if I use it. I don't assume to speak for the people at that store or anyone else except to give examples of what I mean.

  3. Add to this the focus in "treatment" on indistinguishability, and I'd say you've got a very convincing argument.

  4. @Stuart: There are problems with your assumptions.

    You're assuming that being able to do one of those things means you can do all those things.

    You're assuming consistent ability to do any/all of those things.

    That's a Problem. It's a common "shut up, you aren't like my child" Problem.

  5. I agree with this post.

    If that is it I'm "low-functioning", but on the internet people call me HFA assuming I do all of that, why?
    Except if you want to count the times I go out on my own, it's, I think, almost four times a year, so I'm really HF, or not, I don't know anymore, what this means keep changing so I can't decide.

    I see it as LFA is the one who is not supposed to be talking and HFA is the one who is not important to be heard.

  6. Stuart, your definition of hf and lf actually makes sense and seems like a reasonable way to categorize people--but I agree with Corina that people are usually categorized by how they look and not their independence. In RL, I have seen a lot of people (with various disabilities) be called "higher functioning" or "low functioning" than someone else, just because of how they look. And of course people are often called "high functioning" on the Internet by someone who doesn't know them at all.

  7. I totally agree with the sentiment of this post, but, there still seems yet to be an acceptable alternative to these rather degoratory labels, and I do think that there are times when it may be necessary to make the distinction - for example when declaring your disability on a form etc. However, I don't agree with Stuart's analysis as I cannot see how it would be possible to switch from 'low functioning' to 'high functioning' over a few short years, and yet according to his explanation, I would have been low functioning 10 years ago when I didn't go out and needed someone else to do my shopping for me, but would now be classed as high functioning as I attend college daily, attend necessary school functions with my children etc, and have held down jobs. However, I know that the only difference is my increased ability to mimic other people's behaviour - therefore, 'high functioning' could merely be construed as 'great acting skills'.

    Having said this, I have worked with people who have been 'severely autistic' for want of a better description and who would not be able to 'act NT' even if they understood the concept. In other words, they were not able to communicate in any observable way apart from through their physical actions (eg, grabbing something when they wanted it, hitting when angry, rocking when upset etc) With the best will in the world, I'm afraid it would be totally confusing to NTs to describe myself and this chap both as simply 'autistic', as loathe as I am to put people in boxes, sometimes a more narrowly defined description is necessary - particularly when applying for particular services for example.

  8. I have worked with a severe autistic child for the past 5 years. He is labeled high functioning based on his abilities and needs. His social skills are low but improving, and he shows his wants for independence, but cannot control his melt downs over sensory issues or a break in his schedule. Some days, if you did not know him personally, it would be really hard to pin point him out of the rest of the class. I have never thought that he is labeled due to his physical apperance though. That is sort of discriminating.

  9. I appreciate this point being made! Well done! I prefer to tell people, "Take me as I am, or watch me leave." I'm learning more and more, every day, that labels of any kind are ridiculous, outside the world of raw psychiatry/social work/etc. People who don't "get it" don't need to: if they're decent human beings, they'll treat everyone around them with real decency. That's all I ask, and it's what I do try to give. I don't know what more anyone could really ask of anyone.

  10. Also, as I read through the other comments here, I can see that it's very possible that most of us have missed the whole point of this article.

    VISIBILITY is key. Everything people are saying here about "functionality" and what's observed in the behaviors/appearances of people with autism -does- fall under the category OF "visibility."

    The point I'm realizing that was made here is simple: outward behaviors do NOT absolutely define what's going on in the mind. Just because people can't see the hand flapping, the rocking, the tantrums, the "finger filtering", the echolalia or non-verbal-ness, and other things... That doesn't mean that a person isn't Autistic or on the Spectrum. It means they either have greater control over these in front of other people, or they don't suffer from those -outward symptoms- of a much greater problem inside.

    Socialization seems to be at the heart of the issues with Autism. Social rules/customs, and one's ability to learn/conform to them, or even understand them. The outward symptoms mentioned, and others that I'm sure got left out, do not denote a person's ability to understand a social world well enough to "function socially" within it.

    I don't often give eye contact. I don't always smile on cue because I don't even catch peoples' cues. My vocal tones/volume are not always what others want. My jokes are only sometimes funny, and before the age of 17, I couldn't even tell a knock-knock joke successfully. My posture isn't what others want, and I can't read faces or body language in others hardly at all. I don't always understand what other people mean when they're talking to me, and people are ALMOST ALWAYS ASSUMING I meant something else than what I said, verbatim. I "data-dump", kinda like I'm doing here -- because I really DON'T know how to summarize pretty much anything at all. People label me in OCD-ish terms, and other things too.

    THESE are what Autism is. They are what Aspergers is. They are what A-NT is. They are a part of my social self. And people have the darndest time interacting successfully with me when it's more than "Hi" and "Bye" or "Could you help me with...?" I'm fortunate in that I can even ask that. And I never used to, until a few years ago.

    I look completely normal, other than my being overweight. There aren't any physical symptoms of Autism at all. But I do have it. I think that's what this article was really talking about, regarding people like me, upon second glance, as I read through the other comments here.


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