30 Days of Autism Acceptance: Day 18

#30DaysofAutismAcceptance

Day 18:

Talk about functioning labels.  What is your opinion about functioning labels?  Where are you on the spectrum?  If you don’t like functioning labels how would you describe your functioning ability?

This is another hot, controversial and complex topic and another that I'll need to do a lot more reading about before I can explore it thoroughly and more deeply, but this article is an excellent example of why functioning labels can be problematic.

The short answer is: I don't like functioning labels because I think they're restrictive, limiting, too simplistic, too general, divisive and inaccurate.

Intellectually, I can understand why these labels exist and why some people want/favour them (it is important to note that saying I understand something and the reasons behind it is not the same as me agreeing with it). There seems to be an inherent human need to categorise and classify everything. It can help guide services, and guide people and enable them access to services that are likely to be beneficial, places they might not otherwise know about or be eligible for. Here in the UK a label of high-care needs that the Enhanced daily living rate of Personal Independence Payment gives allows a person access to additional welfare support such as Carer's Allowance and a label of severely limited mobility that gives a person the Enhanced rate of mobility under PIP grants a person access to the Motability scheme, which enables you to have a car, scooter or powerchair, and the car can be adapted to your needs. I have a car through the Motability scheme, an automatic Ford Focus with hand controls, without which I would be housebound. If I was deemed not eligible for the Enhanced mobility rate (which I found out I am - letter arrived this morning, causing much relief; this is not the place to discuss the DWP and the government's approach to disability) I would not be able to access the Motability scheme (technically, I would lose that access because I was getting Higher-rate mobility under Disability Living Allowance, PIP's predecessor and if they had decided not to award me Enhanced under PIP I would have had 3 weeks to return my car or buy it off Motability).

What I am trying to say is that these labels of "high-functioning" and "low-functioning" can direct people and give them access to appropriate services, support and so on that without the label they may not get (in theory; the reality on the ground can be very different depending on budgets, staff and so on). They can give some idea of what to expect in the future - though I will go on to say why this cannot be set in stone or even necessarily very helpful.

Musings of An Aspie, linked above, gives an excellent example. From the initial descriptions, she appears to be describing two different women. Turns out she isn't and that she's describing two different aspects of herself. And that demonstrates why functioning labels are so restrictive, overgeneralised and problematic. I'm considered "high-functioning" - I speak, I have a large vocabulary, I've lived on my own, I'm married, I've had a job, I've been to university, I drive, I don't have any care or support workers and never have, I manage my household bills etc, I manage my money, I'm very independent. In many ways I'm much more limited by my physical issues than by autism.

BUT.

When I'm very stressed, tired, overwhelmed, in too much pain, sensory-overloaded and so on, you wouldn't know any of that. Speech fails me and I'm reliant on either my communication cards or BSL. I can't process what's being said. I can't focus or concentrate on anything. I can't think. I don't respond. I clap my hands over my ears. I rock back and forth repetitively. I keen and screech. I repeateadly hit myself either with my hands or against a nearby surface (usually a wall). I react violently if touched. I can't get myself out of a difficult situation. If you only saw me in that situation, you would label me "low-functioning"; you wouldn't know about any of the things in the paragraph above.

Different situations, circumstances and environments, as well as mental states and other things going on in our lives mean that our coping abilities fluctuate, which means that our presentation and behaviour fluctuate. Functioning labels don't allow for that.

And these labels can send false messages. If someone is labelled "low-functioning" as a child, expectations of them are low and they may very well not be aided and encouraged in fulfilling their potential, may be forever put in special education with only very basic schooling, even though they may be intellectually very bright. Inability to speak often means that someone is assumed to have a severe learning disability and is thus not given the opportunity, support or encouragement to express the reality. Because not much is expected of them, not much is achieved. They are presumed incompetent, limited, a burden.

Yet if their needs are recognised and accommodated, and the support made available, there's a huge difference. Again I direct you to Amy Sequenzia, who has cerebral palsy alongside being a nonspeaking autistic, and thus was considered "low-functioning" and was not expected to do or achieve anything in life. Instead, with her needs accommodated and understood, she has become a very vocal voice for autistics online, as she communicates through typing. Or Carly Fleischmann, who doesn't have CP but otherwise is similar to Amy, and again being introduced to typing has completely changed her world and prospects, earning a degree amongst other things, which her parents were told would be impossible. Both these amazing women were considered "low-functioning" until given access to alternative means of communication and their needs accommodated.

If someone is labelled "high-functioning", their needs can be trivialised, minimalised and they are expected to be much more neurotypical. Their needs are dismissed, because they are expected to manage perfectly well. Expectations are different from those with the "low-functioning" label, but no less unfair - they are expected to be social, to be "normal", to pass as NT, to cope, to not require accommodations (and when asked for, get rejected). When things like meltdowns occur they can be made to feel guilty and ashamed about it because they're "not like low-functioning autistics and they should know better". Because I can speak I am expected to always, in every situation, be able to speak and communicate through speech. I am also expected to respond as quickly as an NT, even though I require a little more time to process things before responding (problematic in job interviews). Because I went to mainstream school and had no accommodations (because I wasn't diagnosed) I am expected to always be able to manage just as well as an NT person in a social situation. Because I'm considered "high-functioning", when I have a meltdown people are shocked and horrified, and when it happened when I was a child it was considered bad behaviour and made my parents look bad (well, my mum - my dad was always doing his own thing). When there's a situation in which an NT person would cope, I would be expected to cope just as well as them.

That's one way they can be divisive. Another way, as we've seen with comments from Temple Grandin amongst others, is a way of separating us out in order to decide (arbitrarily) which autistics "deserve" to exist (the eugenicist approach) - ie. those who can "contribute", who aren't "burdens", etc. And it pits us against each other, when we should be doing the opposite - coming together, demonstrating the broadness of the spectrum and the diversity of our experiences, because there's still such a narrow understanding in the general population of what autism is and isn't.

So that's the basics on why I strongly dislike functioning labels. I don't use them if I can possibly help it.

My formal diagnosis is Asperger's, because I was assessed in 2011-12 and diagnosed in 2012, before it was absorbed into the umbrella "autism spectrum condition/disorder". As for my "functioning ability", I hope I've at least covered the basics and fundamentals above, though in future I may well go into more detail.

At some point in the future there will be a much more in-depth post about this subject - it's a complex, controversial one and I want to do it justice - but like a lot of the topics in 30DaysofAutismAwareness, to an extent this post is an introduction to the topic.