Please do not call me low functioning.
How labels hurt autistic individuals.
June 18, 2020
“The fallacy of the intelligence aspect has backfired… The assumption of high intelligence brings with it the assumption of being able to ‘cope’, as much as ‘High Functioning’ Autism does. There’s a whole world of issues with it being assumed that you’re ok because you’re assumed to be ‘smart’ and therefore able to handle everything admirably.” The Autistic Advocate Kieran Rose
I often wonder if someone would actually walk up to Finn or myself and say to us directly “He’s low-functioning.” I have had a few people, family members even, comment like this behind my back but never to me or him directly. Talk about a gut punch either way.
Why is this label a big deal? To say Finn, or any other disabled individual for that matter, is low functioning implies that he/they are “less than” when compared to his peers. In short, it is dehumanizing language. It contributes to the idea that because individuals are diagnosed with severe autism that they are somehow lacking the qualities that make them a full and complete human being.
Let’s take this sentence from a popular magazine and break it down.
“The difference between high functioning autism and low functioning autism is behavioral. Low functioning autism causes behaviors that inhibit the ability to conduct daily life. Children with high functioning autism have similar abilities to his/her neurotypical peers.” -Autism Parent Magazine, Katherine G. Hobbs
When we review this statement, we are immediately set up with a contrast between high and low functioning autism. It states the main difference is behavioral. Meaning that if you have an autistic individual present with difficult behaviors, self injury, aggressive behaviors towards peers, or elopement you will likely automatically assume this individual is “low functioning.” The statement continues to build evidence for this quick and incorrect contrast by then saying that these difficult behaviors impede daily life. While, this can certainly be true that many people with sever autism need support in daily life skills it does not look at the whole picture of what that fact means when it comes to judging someone as “high” or “low” functioning. Finally, the seal on this circular argument of how to define low or high functioning is, if the individual looks and acts more like the “neruotypical peers” they are passing the human test with flying colors. In short, if your autistic son or daughter can sit in a mainstream class room with little to no assistance through the day, you have won the functioning label lottery. The rest of us? Well, good luck.
I can guess what you might be thinking. “But, Terra, why do we need to care about these labels? They are just words and I need something quick and easy to say to all the people who ask me about my autistic kid.” I care, we need to care because words matter. These labels do not only hurt autistic individuals who do face more significant daily challenges and need more support, these labels also hurt those individuals deemed high functioning. A recent study late last year called for an end to the term “high functioning.” After studying data on over 2,000 autistic individuals the authors discovered how damaging these labels can be.
It noted, “The implication of this study is that children given this ‘high functioning autism’ label are not just presumed to have better functioning than they really do, but they actually have far greater challenges with everyday skills than the label would suggest.” -disability scoop Michelle Diament.
This means that if your loved one needs supports they might not get it because they are deemed “high functioning.” If you have thought this whole time that you are okay because you and others around you describe your autistic loved one as “high functioning” you clearly want to rethink this idea.
How did we get these labels that hurt and dehumanize and why are so pervasive in the lay population and clinical communities? I am not sure. I can tell you that nowhere in the Diagnostic Statistical Manual (DSM), the book that mental health professionals use to give diagnostic labels like autism or bipolar, are the terms “high” or “low functioning” used in clinical language. They are not present at in all in pages 1-10 where the information on the autism diagnosis can be found. Ask yourself this, if the terms were in the manual would that make it okay? Does the fact that we can not find those terms in clinical speak tell you something? It is safe to say that because these terms do not appear in the manual that guides professionals towards diagnostic clarity that the labels are useless and do not really tell anyone anything about the autistic person they are used to describe.
If we meet for the first ,second or third time and I say, “Finn is low functioning” what does that actually tell you? I may follow it up with “he’s non-speaking” but again what does that actually tell you? Nothing. It does not tell you that he regularly uses a speech device to yell at me for sour candies. We call it “yelling” when he turns the device up full volume. He laughs at us for that. It does not tell you that despite his many, many challenges we are very certain he can read at least a kindergarten level. And it doesn’t tell you that he requests to go to his Mam-maw’s or Nana’s house by pulling up specific pictures of their houses out of the hundreds that he has taken on his iPad to say “Please take me to their house, I love them.”
Those labels actually keep you from seeing the fully human and beautifully capable person that is my son.
If you want to take action items to be a better human and stop using these dehumanizing labels I suggest the following.
- If you were using these labels, stop. Take a breath, give yourself grace. In short, you know better now you can do better.
- Ask those around you to also stop using these labels. Currently, there is no law we can call on to stop the use of these labels. However, you have a circle of influence. Speak to them and let them know words matter and using these labels hurt.
- Ask yourself, what was I trying to convey in using these labels. Maybe you were trying to describe a specific challenge to an intervention or treatment team member. Maybe you were excited about a skill that your child recently acquired. Speak in specifics. It might take more words and it is worth it.
- Use first personal language and use terms and language preferred by the actually autistic person that you love.
Words matter. We need to do better for our autistic loved ones.