On the day I was officially diagnosed with autism, my psychologist said, “If we still used functioning labels, I’d have diagnosed you as high functioning”. I’m sure he meant it in an informative way, since I seemed to be relatively independent and didn’t need many accommodations. But after my diagnosis, I noticed that many people use the term, “high functioning” as some sort of compliment to autistic people, and that didn’t feel right to me. What about people that were called “low functioning”? They had the same neurotype as me, so why were they treated worse?
It is only after listening to other autistic people that I have realised how harmful functioning labels are, and that’s what I’ll be discussing in this post.
“You don’t have extreme autism”
This phrase is an example of functioning labels that I have heard from well-meaning friends and family. But it stems from the idea that the autism spectrum goes from “low” to “high”, which is not true at all. In reality, our spectrum is more like a colour wheel with different colours representing traits or difficulties we can experience to varying degrees (see the diagram below!). For example, some autistic people might be non-verbal, or they might speak very loudly or quietly, and others might struggle with eye contact or show particular stims. These traits present differently in different individuals.
The truth is, autistic people can be both “high” and “low” functioning depending on the environment, their emotions, and a whole other list of variables which can change at any time. But our way of perceiving the world does not change.
What others see vs what we feel
I have heard others talk about how functioning labels are only useful for allistic (non-autistic) people. They are simply used as a way to describe how our autism affects you. If someone calls me “high functioning”, what I hear is, “I can’t tell that you are autistic, well done!”. But this instills a feeling of shame in me when I don’t mask, or I have a meltdown. The feeling of shame for showing traits, and being praised for masking is also what is used to force young children to mask in certain types of ABA therapy.
When autistic people mask, we are trying to hide the aspects of autism that people might recognise. Then we are called “high functioning” and praised for hiding our autistic traits, even though we are exhausting ourselves trying to live by society’s standards of how to act and think and live.
By calling someone “high functioning”, this can invalidate their struggles and stop them from getting support and accommodations that they need. By calling someone “low functioning”, you are telling them that their needs are too extensive to be a useful member of society. So stop trying to fit autistic people into a linear spectrum.
What language can I use?
If you have an autistic family member who you are advocating for, you might want to use terms such as “higher support needs” or “lower support needs” to describe the accommodations that they need, but don’t stop there. We are not just one label, if you are talking about us and our autism specifically then make sure to actually mention what support we need. For example:
“I have low support needs, which means that I can live independently, although I require therapy to help with social anxiety”.
“They have high support needs; they are nonverbal and use sign language to communicate. They have mobility issues which means they need assistance when walking in the form of a wheelchair or walking stick”.
“They have moderate support needs and have stated that they do not feel as though they can live independently. They live with family and use AAC to communicate when they have nonverbal episodes. They require a disability support worker to work with them once a week.”
This way of describing is objective, and accurately explains our needs to those that need to know. This way of explaining autism helps eradicate the idea that there is “good” or “bad” autism.
We are all under the autism umbrella and you should accept all of us, regardless of our needs.