MFA
November 16, 2007 by Kristina Chew, PhD
Filed under Health
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.
The problem with saying MFA is that it continues to make it sound as if LFA and HFA are legitimate divisions and MFA is merely a middle ground between them.
You forgot to mention Charlie’s sophisticated taste in food, stuff I didn’t try until I graduated from college! I’m always jealous when I see small children (or big children) eating stir fry and/or sushi, sometimes with chopsticks!
I know I wasn’t eating Chinese food until 10. There’s hope for Pop yet.
Amanda—-I definitely agree. If I use the term, it will be with several grains of salt.
KimJ, he’s also added Middle Eastern food to his restaurant likings—-he is basically “gfcf” but does like the pitas…..
I’ve had people tell me that MFA would describe me best, but all it would be in that case would be an averaging of the common things that I do very well or very poorly. Which would be extremely different from someone with a completely different profile of skills (who might be, well, middling on all of them, for instance) who would also get called MFA by those standards.
And that’s just the beginning of the weirdness.
I’m with Amanda on this one.
I think “VFA” (Variable….) is more realistic (and applicable to all autistics) but I refuse to use the “FA” with any prefix.
Our life is very variable …
Phil Schwarz always told me I should be called “functioning level not otherwise specified”.
This was all very interesting. I spent a while looking at the Treating Autism website and found the videos of the children disturbing. I can take photos of my daughter one day looking “connected” and she is doing well and the next you can see it in the photo that she is not “connected” at all. It varies from day to day. We have tried so many of the things they list. Granted, our daughter also has a known chromosome disorder but I always wonder if more autistic people were tested they may see that as more common too. Anyway, our daughter is all over the spectrum. I have not found any of these terms to be helpful in getting her services of any kind or in people understanding her any better. It is a tough subject to come to a conclusion on.
My son’s all over the specturm as well, depending on the phase of the moon and also if Mercury is in retrograde…
VFA? Hmmm, interesting. I do like functioning level-NOS too.
I feel that once you’ve specified something, it usually limits it.
mommy~dearest
MFM (middle functioning mom)
Kristina, as you know, my child’s issue isn’t autism, but dyslexia (or Specific Learning Disability — Reading) which is also a spectrum disorder.
I look back at what was known, scientfically, about dyslexia when she was diagnosed 11 years ago, and what is known now — researchers have made huge strides in untangling the dyslexia puzzle. I think in the decade to come we will be able to talk about “the dyslexias” and have specific, targeted remediation strategies, depending upon the child’s underlying neurocognitive profile.
As “real” research into autism goes forward (as opposed to the McCarthy-style University of Google), I suspect we’ll find causes, remediation strategies, and accommodations. We may also be able to disambiguate say, Asperger’s from classic Kanner autism.
I heard Ned Hallowell speak recently about ADHD. He wants to move from the “medical-deficit” model to “finding the strengths” model.
Personally, I don’t see the two models being mutually exclusive.
Kristina, how would you feel if someone described you as a high-functioning woman?
Or a middle-functioning Asian?
Think about it for a bit and you’ll see why so many autistic people find functioning labels offensive.
If labels like “high-functioning” and “low-functioning” are rejected as hurtful, how does one succinctly describe a specific person? Sometimes you don’t have time to catalog all of your child’s “high” and “low” characteristics in a conversation.
“Why is your son doing that?”
“Because he’s autistic”
“My nephew doesn’t act like that and he’s autistic. He’s a junior at Illinois State majoring in structural engineering.”
“Well, my son has lower-functioning autism.”
“Oh.”
John Barr… you could just say “Not all autistic people act the same.” That’s the truth, and nosy people aren’t entitled to a complete description of all your child’s characteristics anyway.
John, how about saying something like, “Well, not all autistic people are exactly alike?” Not all nonautistic people have the same exact personality and skill set, after all — someone can be just as “nonautistic” as another person, and have a completely different pattern of abilities and predilections.
I don’t see why it should be different for autistic people, and it confuses me as to how we’re expected to be alike in ways that nonautistic people are allowed to vary drastically in (while still being considered part of the normal diversity of nonautistics).
abfh and AnneC, you’re both right that the issue can be worked around. However, it seems to me that the “autism” label is in fact overly broad and that it would be helpful to have some kind of sub-taxonomy under “autism” to further define what is really going on out there. If “LFA” and “HFA” are no good, perhaps there are better words to use.
Hey afbh
I guess you are still alive. You havent replied back in an email lately
Hi Joe, I didn’t know you had sent me an e-mail. Maybe it got deleted by mistake…
abfh, I’m always curious as to how people describe me!
John Barr wrote:
it seems to me that the “autism” label is in fact overly broad and that it would be helpful to have some kind of sub-taxonomy under “autism” to further define what is really going on out there.
I agree that the autism label is extremely broad, but we don’t yet have enough solid, peer-reviewed, credible research to provide clear definitions of “what is really going on.”
If you wish to know, Kristina, I haven’t called you a “middle-functioning Asian” or a “high-functioning woman”, in case you were wondering.
The problem with “functioning” terminology is that they imply mental function, and are setting up superior and inferior individual in a far more significant way than deserved by the situation. Having been called both low functioning and high functioning (I actually use the terms low functioning in relation to myself for the purpose of getting people to think about that, and how silly it is), I know from experience it has nothing to do with mental ability, and it has far more to do with social skill sets.
Even that distinction aside, they are really offensive. Something that sounded more like “athletic” versus “non-athletic” (where there is a judgment in skill but not a judgment in personal character) is called for.
Cliff
Besides being hurtful, the descriptors aren’t always helpful. I talk to people with Asperger’s (or their parents) and they describe identical and oftentimes worse problems than my autistic son. But Asperger’s is supposed to be “mild autism” or not even autism. So, the labels just don’t really work as far as describing disabilities or abilities.
People attach stigma, expectations and stereotype to these labels.
Some use the labels to imply different disorders altogether. (eg “high functioning autism may be genetic while low functioning autism usually regressive and caused by environmental toxins”)
Some use the labels to disqualify others from having a valid opinion about autism. I have talked to parents who believe Amanda Baggs is “too high functioning” because “she can type”.
It gets really absurd after a while. Currently the school my son is in is trying to disqualify him for autism services “because he’s so high functioning”. They fail to realize that without those services, he can’t attend general ed classes. He needs the accomodations and training that comes with an autism diagnosis.
Thanks, Cliff—I’d like to say, too, that my “functioning” is “NOS.” I get evaluated and rated (as in ratemyprofessor.com) in other contexts—those can be interesting.
KimJ, your comment reminds that if others who make certain decisions for our kids—or who are in positions to make those decisions—thought about the implications of these terms as much as we do here, that might make a difference.