What is Wrong With Functioning Labels?
One of our Community Guidelines here at Parenting Autistic Children with Love and Acceptance is that we do not use Functioning Labels. This is because using terms like “high functioning”, “low functioning”,”severe” and “mild” when referring to Autism and Autistic people causes a lot of problems.
When you start categorising into ability based on outward appearance, you put people into groups that do not accurately reflect who they really are. You minimise their struggles. You overlook their strengths. You make assumptions you have no evidence for and no right to make.
But it is even more complex than that.
The best way to explain why we don’t like function labels is to let Autistic people tell you what they think of them……
“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.”
“I am autistic, non-speaking. I am also labeled ‘low-functioning.’ This label is a pre-judgment based on what I cannot do. It makes people look at me with pity instead of trying to get to know me, listen to my ideas.”
“…it is very dismissive to call someone ‘too high-functioning to understand’ as if they don’t have challenges, as if their autistic lives are just an adventure with a happy ending. Some autistics might be able to live independently and work; some have children and seem to live an ordinary life. But they also have moments when they might ‘lose’ their ability to speak… “
“So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I’m high functioning, you just ignore the weaknesses, and if I’m low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!).”
“In reality high-functioning and low-functioning are not real labels, having no definition, no skill set lists, and no diagnostic criteria. Yet these words are often used to determine opportunities that will be denied or extended to an autistic and in assigning the correct amount of personal responsibility and blame to an autistic for the way his autism plays out in everyday life.”
“A person is not a function. A person is a person.”
and there is a great story that goes with it at http://www.tinygracenotes.com/2012/10/a-person-is-not-function.html
“Without the fictive reference point of ‘normal,’ functioning labels – ‘high-functioning Autism’ and ‘low-functioning Autism’ – are also revealed to be absurd fictions. ‘High-functioning’ or ‘low-functioning’ compared to what? Who gets to decide what the proper ‘function’ of any individual human should be?”
Giraffe Party says:
Autism is autism is autism. Asperger’s, low functioning, high functioning, severe, mild, whatever. It’s not a condiment or a flavor. It’s a neurological processing condition. There is no such thing as forms or levels of autism. A person is either autistic or they’re not. The ‘forms’ or ‘levels’ are a false label created by a handful of therapists and medical ‘professionals’ to make you think a child is somehow ‘worse’ before seeing that therapist/specialist and afterward, is making progress with them, so they can tout their therapy/intervention as having worked.”
Square 8 wrote a great piece called “I am Joe’s Functioning Label”: