Functioning labels

[sammason]

Most of the autistic people I know seem comfortable with terms like 'the spectrum' and 'high/low functioning' so I hesitate to give a different opinion. But I'm not comfortable with those terms.

Comments

[kath_ballantyne]

We don't tend to use high or low functioning at all. We do use spectrum to refer to autism, it's range of effects and associated conditions.

I think levels of functioning as used by the media and quite a lot of other people are based on 'passing'. It's kind of an ugly concept whether it's applied to skin colour, sexuality, trans*, disability or neurological difference. Can people tell that you are from a minority group and not 'normal'

A bit off topic but I think it's one of the reasons some people resist mobility aids for so long. In one look, someone can tell you're not part of this mythical 'normal'.

Ruth can 'pass' better in a short conversation with a stranger than I can on an average day. I can read the non-verbal cues better but my social anxiety causes a lot of problems.
In longer conversation it becomes more obvious that she isn't noticing when someone wants to stop talking and she's not aware of the volume she speaks at and she's interrupting or going on about one subject when the other person is not interested. My father always got annoyed because he thought she was coming across like she knew it all and thought you didn't.

Other days she can't get off the couch because of crippling anxiety about the smallest of things (or nothing at all).
She has lost jobs in the past because she has very little working memory. She can tell you what show 10 years ago (that she saw once) some bit part actor you've just seen was in but she can't remember the hand full of things you asked her to do.

She is empathetic and kind and would do anything to stop me feeling upset or in pain but can't manage to remember what to do when I'm crying. She asks me if I'm okay and can she do anything but wont hold me and tell me things are going to be okay etc.

So yeah, functioning is undefined and useless as a term and has all the gross ties to passing in 'normal' society

[nightengalesknd]

Passing! That's exactly it. I don't know why I never thought of it quite that way before (I do plenty of thinking about passing and invisible disabilities) but I hadn't. I'll have to consider that as Discomfort #4, tying into passing privilege and ableism

It's about passing as non-autistic. Although I don't think most people actually pass as typical, but are instead labeled all sorts of other things such as "lazy" and "weird."

I don't have a problem with "spectrum" either, as I think it gets to the idea that autistic people are different from one another even as there are some common traits. Although I get families asking "where is he on the spectrum?" as though I can supply a specific point on a number line. And they say we're the overly concrete ones. . .

[sammason]

A number line! Yes, that's why I don't like 'spectrum' as a way to talk about autism. In science I say 'spectrum' to mean variance along one line - the wavelength of light, the temperature of air. My disability isn't on a spectrum, and I don't perceive autism as being on a spectrum either.

My neuro often describes multiple sclerosis by tracing a line in the air with her finger. A graph of severity against time. Many people do that about MS, usually making it look like a fluctuation which doesn't really change in the long term. My neuro draws a line like a flight of steps. Sometimes I use the term 'stepwise worsening' when explaining to people why I don't want to be asked how my MS is 'progressing'. My neuro also uses her finger to show a frequency distribution of how well a drug works in different people.

But the daily reality of MS doesn't involve a simple, single line of variation. It looks to me as though autism doesn't involve a simple, single line either.

[nightengalesknd]

No. Most disabilities don't really.

There's differences between people. I have strong verbal abilities and very weak visual-spatial skills. Many autistics have the opposite pattern, which is where the idea that we all "think in pictures" started. I have a friend who has a similar learning profile to me. But I'm better at picking up on verbal social cues than she is, have a stronger memory but overall weaker visual processing. Her memory is a weaker point but she has much stronger visual processing skills. I've taken care of over 100 kids and teens diagnosed with autism. All have some degree of difficulty with social communication and with repetitive behaviors and interests, but beyond that there's not 2 alike.

And then there's the issue that abilities can change over time. People can gain skills. People can loose skills. And abilities change so much depending on the circumstances. How tired one is. How busy one is. How much one trusts the people around. How noisy it is.

I've encountered the term "constellation" which I think is a good description of a population of people, but still suggests one can pigeonhole an individual person to a specific data point.

[sammason]

Now I'm wondering whether social communication and repetitive behaviours are major diagnostic criteria for autism. If so, that's a self-fulfilling prophecy.

[nightengalesknd]

Social communication impairment and repetitive behaviors and interests that impair function are basically the diagnostic criteria for autism. There are a few specific sub-aspects that need to be met, and the presence of sensory issues counts for something, but essentially that's it.

That's my point - that's the only universal thing I can say about every autistic I have ever met and presumably every autistic I haven't met, is that we all have impairment in these areas to some degree. That's the only universal thing that I think anyone can ethically say at this point, although unfortunately that doesn't stop many people from saying other things and implying universality.

Other than that, there are commonalities, there are many things that apply to many people, perhaps even the majority of people, but there are also many differences and nuances both within manifestations of these criteria and in all the other ways that people differ from one another.

[brightlotusmoon]

Yes.

As an autistic, I might reluctantly tell someone I am "on a higher end of the spectrum" if they don't quite get the idea. I've been told I could pass for the mythical normal.
As some with cerebral palsy, who does not need any mobility devices except a cane, and sometimes not even that, I've been told I could *almost* pass for the mythical normal. Especially on the days when I do not use my cane. "Oh, you don't have your cane; you must be feeling better!" which is a nice intention, but fails spectacularly when one realizes that in cerebral palsy, "better" is not a word often applied. The people who use this phrase at me are people who know I have spastic ataxic hemiplegic cerebral palsy and they know I still limp.
With fibromyalgia, mental illness, and various neurological disabilities, it is easy for someone to tell me how well I can pass. Unless my cerebral palsy symptoms are extremely, actively recognizable, I am told I "don't look disabled". As my friends in my CP support group tell me, I don't even have a palsy accent.

[nightengalesknd]

My autism and CP are both "mild" enough (another word that isn't really defined) that neither were properly diagnosed until I was an adult. Most people don't believe I have either. I think the reason that the social model of disability means so much to me is that I spent childhood as a failing non-disabled/neurotypical person.

I use a cane now. The irony is that the cane marks me as appearing disabled, but my actual functional abilities are so much stronger with it than without it. Life would be so much easier without other peoples' perceptions.

[sammason]

Yes it would. I've learned to love my wheelchair because it's so liberating, physically, but as a badge of disability it's a mixed blessing.