Back in 2008, Bev over at Square 8 wrote a post entitled I Am Joe’s Functioning Label. The post struck a chord with me right the first time I read it, and, over the years, it has become more relevant. For those who don’t want to hop over to read the post, it’s about what the label “high-functioning” is perceived to say about an autistic person, and how this impacts the way autistics are treated.
For clartiy’s sake: I am not saying that people with an intellectual disability have it easy. The cuts to care and the accompanying independence doctrine affect them too. What I do mean is that it is often easier to understand why a person with an intellectual disability needs care than if you have a high IQ.
It is often presumed that a person who can do a cognitively challenging task like operate a computer, can also do more basic tasks like brush their teeth. In reality, these skills have nothing to do with each other. Another assumption is that people who know how to perform a task and/or why it’s necessary, can also perform that task. I remember even years before Bev’s post reading on Autistics.org about a woman who was getting ulcers beecause social services presumed that if she knew about hygiene, she must be albe to wash herself.
There are many more assumptions about people labeled high-functioning. Here are a few that are affecting my life.
- Because of my functioning label, I am presumed to be safe in traffic. Since starting to learn a tiny route around the building, I am not only allowed to leave the ward alone without any purpose, but am expected to leave the ward if I’m angry.
- Because of my functioning label, I am presumed to be able to take care of my personal hygiene without reminders or help. This is in a way somehting I don’t want to change, because the reason I’m not able to perform some skills of personal care is because of sensory issues.
- Because of my functioning label, I am presumed to know how to solve problems myself even when anxious or overloaded (my fuctioning label dictates that overload is just an excuse to avoid demands). I am presumed to be able to make my needs known in very specific terms.
- Because of my functioning label, I am thought to be able to perform practical skills like making a bed or pouring coffee myself. Ironically, the motor deficits which cause me to be unable to perform these tass, were originally thought to be especially common in Asperger’s Syndrome.
- Because of my functioning label, I apparently don’t need a lot of structure. This means I am presumed to be able ot schedule activities without help.
- If I get overloaded, my functioning label dictates that it was my own choice and I’m depriving other people of the right to make noise.
- If I have a meltdown because my routine is interrupted, again, my functioning label dictates that I’m just spoiled and trying to always get my way.
- Because of my functioning label, I am presumed not to engage in aggressive or self-injurious behavior. If I do, it’s obviously because of BPD-related attention-seeking.
Yes, I see that a lot of these assumptions are not just based on my functioning label, but also on my co-occurring diagnosis of BPD. Before I had this diagnosis, not only was I not presumed to be unwilling to act normally, but my autism was presumed not to be as mild as it is now. Hence, an additional diagnosis makes it seem as though I’m less severely affected. Isn’t that ironic? By the way, if instead of Asperger’s and BPD, my diagnosis had been multiple complex developmental disorder (McDD), which is characterized by practically the same symptoms, I would likely have been seen as quite severely autistic.