I am one of those autistics who were said to be hopeless. Doctors and “experts” were convinced that I would never make any progress in life, that my parents were better off sending me away so they could have one. The “experts” said I was “too low-functioning to learn”.
Of course, they were wrong. I am here, I have an independent mind, a fairly independent life. I taught myself to read and I am a writer. But I am still non-speaking and I look very disabled. I also need a lot of help with things that are considered simple by most people. Maybe that’s why the “low-functioning” label stuck. It happens to a lot of autistics like me.
The assessment is incomplete and based on parameters that were created for non-autistics, by non-autistics, not taking into consideration the neurological differences of autistics.
This is also true when labeling some autistics “high-functioning” only because they look like what is said to be “normal” and can act more like non- autistics. They are trapped, and any autistic trait they show, any extra help they might need, is met with skeptical looks and scorn. They learn to doubt themselves and they are told to get over it.
Most autistics I know dislike the functioning labels. They know they are pointless and useless. Functioning labels get in the way of assessing needed supports and they create a culture of presumption of incompetence. Not to mention the lack of understanding and lack of empathy directed at us.
We still have to deal with it. It is hard, being non-speaking, to respond to the use of such language during conversations, especially when those conversations include a lot of neurotypicals. By the time we type something, the talkers have moved on.
There is also a deal of disrespect, when our opinions are not as valued because of how we look or act.
Some people do listen and change how they use the words. I know neurotypicals who truly get it. But the majority of them don’t really listen to us and keep using labels that classify us as “not so bad”, “bad”, “terrible” and “pitiful”.
Having to educate neurotypicals on what functioning labels mean can be tiring but I have seen progress. Some of them understand our arguments and are very supportive.
I do see a more serious problem when autistics themselves use this classification, usually an autistic calling himself “high-functioning”.
I think I know why parents of young children need to use the “high-functioning” label. They want reassurance that their children can “overcome” certain “issues”. Or maybe the child does not experience some issues that make everyday things more challenging. Parents don’t want this child to be seen as “so disabled”. I wish they could understand autism better.
But why do some people who experience many of the same issues I do, the difference being possibly the willingness of neurotypicals to accommodate their needs, why do they use language as if they are “superior autistics”?
I have met some of these autistics. They often introduce themselves as “high-functioning”. I have also read an interview with Temple Grandin, the most famous autistic with a “high-functioning” label, where she seemed to think very little of people like me. In the interview, she mentions how we should include and give opportunities to all “high-functioning” autistics. How about the rest of us, the ones who don’t fit her favored category?
Dr. Grandin’s life has been discussed, turned into a movie and “inspired” many. We know some of her challenges and how she dealt with them. She is a brilliant woman and her contributions to the profession she chose are important.
But she was also privileged. Many people supported her and I believe money wasn’t a major problem for her family. This certainly helped and she could focus her energy on improving her skills. She was able to develop the “squeeze machine” to relieve her anxiety and focus on her academic life.
Imagine if she had not had the supports that allowed her to build the machine. Would she be so successful today?
The same goes for other autistics who call themselves “high-functioning”. Would they feel like they are better than me without the supports that allowed them to succeed?
I know that there are many differences among us. I know that I will not be able to do certain things in my life. But I also know that I am not part of a lesser group of autistics only because I look very disabled and need more accommodations and human supports.
When people in my own community use the functioning labels, it feels like they want to feel superior by distancing themselves from us, the ones with more obvious needs. Worse, they buy into the neurotypical grading of autistics. They become, in a way, the followers.
I am autistic and in autistic issues I want to lead, no matter how neurotypicals want to grade me.
“If you judge a fish by its ability to climb a tree…”
Maybe some of us are fish and you need to meet us in our environment, where we have the supports we need to succeed, where you can see our value.
Read more posts from Amy Sequenzia.