Sunday, September 22, 2013

Functioning labels

Have you heard the term "functioning labels" in relation to Autism diagnosis? It refers to the tendency to call an Autistic person "high functioning" or "just an Aspie" if they don't seem "too badly affected by Autism" and to refer to Autistic people who are non-verbal or have trouble with toileting or who stim a lot more noticeably as "severely Autistic" or "low functioning". I guess people do this in an attempt to let others know more information about the Autistic person in question. However, I have a real problem with it, and in this post I will explain why.

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 I don’t like function labels is to let Autistic people tell you what they think of them...... 

Amy says 

“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.”

“ 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, ..... “

Alyssa says

“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!) 

Judy says

“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. 

Ibby says 

“A person is not a function.  A person is a person.” 

and there is a great story that goes with it

Nick says

"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?"

Square 8 wrote a great piece called “I am Joe’s Functioning Label”

You can also find the content of this post at the Facebook Page Parenting Autistic Children With Love And Acceptance where I help with moderating. It's a great page for those wanting to get involved in discussion about respecting Autistic people and listening to their voices on issues important to them.

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