On Functioning Labels

I had a post go wild on Tumblr, so I figured I’d cross-post it here since people seem to like it there. Because the point is important and apparently people think I made it clearly. But please do go read Alyssa’s post first since I think she did a better job than me.

Alyssa of Yes, That Too has already done this but I want to just to add an extra narrative backing up her point about Hillary and Rose.

Here’s a tale of two women:

Claire is in her mid-20s and has only lived on her own for eight months of her life, during which time she nearly set fire to her apartment on three different occasions. She has times where she is unable to speak, and even when speaking, she is unable to reliably modulate volume, tone and language to her audience. When stressed, she often resorts to AAC to make communication easier. She typically makes eye contact only under duress, and often doesn’t look at people she’s talking to at all. She has difficulty understanding nonverbal communication and is unable to reliably tell the difference between lying, sarcasm, and honesty. Claire dresses entirely in soft cotton clothing with some stretch to it – her outfit of gym pants, T-shirt, sneakers or boots in the winter with a sweater is worn so often it’s jokingly referred to as her “uniform.” She will only wear the colors black, grey, blue and dark red. She refuses foods with uncomfortable textures and as a range of sensory sensitivities. When anxious or stressed, she often chews on her fingers, and when overloaded, she will bang her head on walls, bedposts or her chair. If furniture is not available, she will hit herself instead. In the classroom, she alternately fidgety and so utterly absorbed that she doesn’t notice change of schedule. Claire is utterly unable to maintain organization and relies on an elaborate system of alarms, reminders, emails, lists, and fridge notes to remember appointments, chores, due dates, and suchlike, with varying degrees of success. She relies heavily on others to remind her to do various activities of daily living, like eating and drinking. She is able to hyperfocus for extremely long periods of time, and if allowed to hyperfocus on her special interests, she will forget to eat or sleep without prompting from another. This is especially problematic, as Claire has a number of chronic health conditions that require daily maintenance and compliance with a regular medication routine and a medical diet.

Carey is also in her mid-20s and currently lives with her partner of almost 4 years. She is currently a PhD student with an MSc and several years of work experience. While conducting full-time research as the head of her own project, she has been teaching herself chemical engineering course material to pass her comprehensive exams. This year, she also began to self-teach German in prep for an international post-doctoral position she hopes to win at some point in the future. She volunteers in science outreach and with a number of activist causes, in addition to being active within the student government at her university. She has prepared talks that have been delivered at international conferences and assisted in course development for upper-level undergraduate and graduate courses. Carey has several scientific publications in the works, all of which are likely to be published in high-impact-factor journals. Organization and socialization have been challenges her whole life, but she’s developed workarounds for her issues that allow her to get the most important things done reliably. She manages her health conditions competently and is often praised by her doctors as being an extremely knowledgeable patient who can sometimes teach them things about the latest research.

How would you identify Claire’s functioning level? What about Carey’s?

Think about it for a moment.

Now, what if I were to tell you they’re both me? Tell me, am I low-functioning or high?

This? Is why I and most other adult autistics I know think functioning labels are bullshit.


4 thoughts on “On Functioning Labels

  1. luckymermaidx2 says:

    well, I agree, and they (labels) can be used ‘for’ you or ‘against’ you, depending on what ‘entity’ you are dealing with. It must be frustrating…..I have a teen who has numerous issues, not yet able to live on her own, will always need help…..she has some of the issues you have, or she has had them in past…..(not comparing you, just remarking) I’ll be glad to follow you, I am still figuring out my own abilities about blogging……..so I wish you good luck!!

  2. Your dual presentation is so close to how I see E…there is the part that I have no idea what the future holds as far as independence, and the part that is so Damn smart and the seemingly odd things he does that you can just watch him study things and the little wheels spinning as he puzzles out the how and why of how it works. And then my aspie who is “supposed” to just be independent like anyone else but under the surface is a long way from that point. One would be classified high one moderate to low…but as you point out and I’ve said before in a post it’s BS because there are so many facets to it. My 4yo is already equal or better at self regulating than his almost 16yo brother.
    Anyway I’m derailing and rambling as usual…the point was I agree.

  3. Clarification…I do not functioning label them that way…that is where the experts Drs etc would I don’t agree nor think it has any use whatsoever

  4. Reblogged this on Opposite Ends of the Spectrum and commented:
    This is a VERY important thing people need to know! My children wear the autism label, but the function labels are utterly useless…for one thing, functional in comparison to what? And second, if I were to find that standard and try to assess functioning, I would have to assess each task/function area separately, and probably reassess each 100x a day. I think she paints a very clear example of this.

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