MFA

by Kristina Chew, PhD on November 16th, 2007

I’ve been thinking of using that acronym, “MFA,” to describe my son Charlie. Middle functioning autism. We’ve all heard the terms “low-functioning autism” (LFA) and “high-functioning autism” (HFA) used to describe autistic persons and, especially, to categorize and label.

Whether or not a child with an autism diagnosis—a “classic autism” one at that, with a speech disability like Charlie’s, “behaviors” of various sorts, in need of services and supports for his whole life—-has the “same thing” as someone with a diagosis of Asperger’s and who can attend college, have no notable speech disability, self-identify as “on the spectrum”—-whether someone so “lfa” and someone so “hfa” have the same condition, “autism”: This is a question that I keep hearing again and again. To be “lfa” seems to be what Thomas Sowell calls “genuine” autism; in contrast, being more on the “hfa” end of things is to have something perhaps like Einstein Syndrome and not “autism.” An article in the November 16th Independent notes that some parents are critical of the National Autistic Society’s “Think Differently” campaign and have started a separate organization, Treating Autism. The parents decry (as do some in discussions here) any thought that their “severely autistic” child (whose severity is often judged to be evident because of gastrointestinal issues and difficult behaviors) can be like an autistic adult:

She and her colleagues, members of the rival organisation Treating Autism, organised last week’s letter to The Independent. Treating Autism is a charity that promotes therapy for children with autism and insists it works. “Hope for people with autism does not lie in celebrity endorsement and a pretence that autism is normal but in the torrent of medical research that is pouring out of the United States,” its letter said. It accused the NAS of being “on another planet”.

It was the first salvo in the latest round of hostilities in the autism movement. Similar disputes have been seen in other areas of disability between those who believe it is best to accept the condition and adapt to it, and those who insist on fighting for research funding and treatments.

………..

Sally Eva, chief author of the Treating Autism letter and mother of a 15-year-old daughter, Edith, diagnosed with autism, said: “People with autism range from those at the severe end who can’t tell a person from a post to those at the mild end who may be madly over-communicative. The NAS employs people with autism so it is over-influenced by those at the mildly affected, employable end of the spectrum. The real argument is between people who believe in “neurodiversity” – that autism is on the normal spectrum and we should work for more public acceptance of it – and those who believe it is a medical condition that needs treating.”

Others have since joined the battle in The Independent’s letter columns. On Wednesday, Paul Wady, 43, who was diagnosed as on the autistic spectrum two years ago, and is employed by the NAS, described the demand from Treating Autism as “sheer lunacy”.

Later Mr Wady said: “Of course if you can treat someone with autism so that they are more functional and they can progress to adulthood, that is great. But denying someone their nature – that is wrong and stigmatising. It is the idea of eliminating faulty genes that cause the condition that is so objectionable. We are what we are.”

I am not comfortable with, not think it accurate, to describe Charlie as “LFA” or “HFA,” most of all because what I gather to be the commonly used meanings of these terms does not truly say what Charlie is.

If I wanted to, I could make Charlie sound “lfa” indeed. My 10 1/2 year old son has fewer worrds than many children much, much younger than him. He is not at grade level in any of his academic subjects and the gap becomes more of a gulf with each day that passes. His “behaviors” more than a few of the really “severe/challenging/aggressive” ones and it was once suggested that Charlie wear a helmet. I still carry a change of clothing for him in my bag when we’re out, and a plastic bag. Journalist David Kirby has written about autistic kids who leave “rivers of diarrhea” on a favorite carpet: I have, after 10 1/2 years of motherhood, figured about some more effective ways to clean up carpets meeting such criteria.

If I wanted to, I could make Charlie’s “HFA” abilities be my main theme. The 14 mile bike rides are the norm not the exception for Charlie. He swims in the ocean alongside the teenagers; walks around New York with us, likes to go to the movies and see music performed; plays the piano; likes school and is unsettled to have a day off. Charlie can do a lot and I’ve hopes of him getting a job when is older, having a place of his own to live, and (who knows) a little romance.

At the moment, I’ll stick to saying he is as he is—MFA.