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.
I am a so-called “neurotypical, but have my on neural distinctiveness. This year, as a reading specialist at a community college I was awarded a sabbatical to research models for the most effective support for autistic students at our college. I have become convinced that encouraging self advocacy, celebration of strengths and promotion of the concept of “neurodiversity” are among the best supports we can build. I am hoping we can open our academic opportunities to as many “diverse” thinkers as possible, including non-verbal autists. Amy, your words inspire me. As always, I learn from you as I have from my autistic students. Thanks for your inspiring posts.
Excellent……your article brought tears to my eyes…..
Love this, her insight into the term “high functioning” is thought provoking.
Brilliant and very thought provoking.
This is amazing. My husband and I were discussing this issue yesterday . it bothers me tremendously to have to listen to anyone use this language. Setting anyone above someone else never serves to help either individual.
I don’t like functioning labels because they separate us instead of bringing us together. But I was always afraid that if I didn’t use the label “high-functioning,” albeit with the words “so-called” attached to it, then people would get angry. “You’re not really autistic. Asperger’s isn’t autism. You’re not like my child. You don’t understand what it’s really like.” I felt that I had to justify calling myself autistic by making the distinction, so as not to look like I was trying to undermine the challenges of people who have more needs… I feel so ashamed. :(
Don’t feel ashamed. :) Your intentions are good and besides which you have illustrated in this post that you would like the focus to be to bring people together and not to grade people, exemplifying your point and the stance of support, care and equality. Try not to be hard on yourself. Life’s complicated enough. I know I’ve had my share of feeling ashamed about something or other but I think the guilt usually isn’t warranted, such as I don’t think it’s warranted in this circumstance. :) I concur as well – I don’t like grading people or pitting people against one another or elitism, so I agree with you.
You’re awesome. Thanks for the pep talk!
Hey Kitt…. we just had this for a subject. What a hoot! Go to our page and scroll down for -“My child is more autistic than your child” – posted on Jan 13.
I strongly dislike divisive words, divisive tones and view it as negative to bridging community. We must help one another upward not downward. :-)
This is so true and needed to be said!
You go, Amy! My son is non-verbal and a beautiful soul. I’m so proud of him and his accomplishments. He works harder than any ‘neurotypical’ person I know.
Excellent piece. We are all on the spectrum which is a beautiful rainbow full of a million amazing colors! We on this spectrum know how it is to be pre-judged and labeled and how unfair it all is and how it hurts. Thanks for bringing attention to this.
I love this post. Thank you. I am “high-functioning” so are my kids my sister and brother. Although none of us cope well with social stuff or in the work place. My Dad is diagnosed with Autism and low IQ. He is only verbal in the home and has suffered all his life with bullying from people who can’t see who he is. It made me quite angry that they added “Low IQ” to my Dad’s diagnoses because to me he does not lack intelligence just the ability to verbalise it, also he can’t read or write so has no way of expressing unless a person takes the time to love and accept him for who he is. There is nothing my Dad can’t take apart and put back together, he can repair anything. My kids and my nephews call him Grandad fixit.
Wonderful post that I am so going to share.
Love and hugs. xx :)
Wow. Thank you. I am “high-functioning” but still – I can’t hold a job, and have an enormous amount of trouble making friends and “getting along”. I am exhausted all of the time from the effort, and a number of times, I decided that death would be “better”. I am not eligible for any type of support because I am “high-functioning”. I also cry for my brothers and sisters who are non-verbal as I watch people treat them like idiots when they are anything but… I am so over the way other people try to define us and box us in… Thanks for writing such a great piece.
Thanks Amy! I totally get it, even though I am the NT parent of a teen who needs a lot of support. Instead of trying to fade support to make him “higher functioning” I fight to get him the right support to he can become his best self and not just independent at a lesser level.
Love this, Amy. Thank you!
Another fantastic post Amy! Thank you for continuing to speak out and never allowing other’s to silence you!
What you’ve written here is very helpful. The function labels of autism (high and low) not only support every misconception and harmful view of autism, which preserves the most abusive therapies being considered the best and sometimes considered the only alternative; it also glorifies non-autistic traits as being more human, with more evolved and more empathetic and feeling human behavior, and less deserving of the traditional punishment which someone receives for the crime of being autistic.
Describing autism as high and low functioning supports the way the diagnosticians/behaviorist defines what they call the autism spectrum as the lowest end of the value scale of what they call the human spectrum.
A wonderful intro to why the terms high or low functioning are harmful as they pertain to autism. I can’t tell you how many times I’ve told someone I have aspergers, only to have them furrow their brow, take another look at me, and reply “well, you must be really high functioning then since I couldn’t tell.”
Not helpful. And it erases the efforts I’ve made to succeed academically, to secure employment, in a world that wasn’t set up with the way I process my environment in mind.
Just food for thought.
Totally agree! Wrote on the same subject today! We must be connected in spirit!
“I am autistic and in autistic issues I want to lead, no matter how neurotypicals want to grade me.” Amy Sequenzia on Ollibean. I love your leadership Amy. Thank you!