Dangerous and Misleading: On cure, lfa, hfa, and autism
At one end of the autism spectrum we often find lower functioning persons like my daughter who cannot speak, have violent tantrums and can be self injurious, while at the other end we have persons who struggle with very significant, but very different, predominantly social issues…….
……
When we at Autism Speaks use the word cure, we are most often focused on the people at the lower end of the spectrum.
So writes Alison Singer, Senior Vice President of Autism Speaks in “Cure” is Not a Four-Letter Word, her essay in a series on use of the word ‘cure’ in relation to autism.
Singer makes a distinction between those who are “lower-functioning” and “higher-functioning”—-terms that I think (see this earlier post) are not only inaccurate, but highly, and dangerously, misleading (see what Mom-NOS writes about this subject and also Ballastexistenz).
My son Charlie has been and is still considered “lower functioning.” He can talk, but minimally and only thanks to hours and years of ABA and speech therapy. He has had tantrums so violent that windows have been broken (with his head); he has head-banged so much that there is a permanent bump in the middle of his forehead. In his small self-contained autism classroom in a New Jersey district, Charlie is deemed not to have certain “prerequisite” skills to participate in certain activities with many of his classmates. Charlie goes on 12-mile bike rides with his dad up steep hills. He swims in tall and rough waves at the Jersey shore, he manages himself on his boogie board. He can read music and plays the piano. He goes everywhere with us: Manhattan, rides on the train and subway and PATH, grocery stores, Target, malls, airplanes, college campus libraries.
Never underestimate the potential of our autistic children by categorizing, by labeling them, as “lower” or “higher” functioning. All of our children across the autism spectrum can learn to “function,” with the education and other supports that best suit them. All of our children across the autism spectrum struggle in a spectrum of ways. Who are we to say that a child with Asperger’s who sits alone in the middle school cafeteria and is bullied suffers “less” than a child who has an end of the day tantrum at school because he cannot ask to have his sweatshirt taken off?
I write to Singer as one mother of a nine-year-old autistic child to another mother of a nine-year-old autistic child: My son, like your daughter, is very much “abled,” as your daughter is described in the profile of you on The Huffington Post. My son, and your daughter, are both differently abled in more ways that we can imagine and it is up to us as sister autism mothers to learn to see, to accept, and to love the beautiful difference that our children make.
Those who are focused on a “cure” for autism are in danger of not seeing this difference—of not seeing our children as they are and of grasping all that our children can be.
Related Stories
POSTED IN: Autism Organizations, Diagnosis, Disability Rights, Education, Family, Health, Rhetoric, Stereotypes, Treatment
10 opinions for Dangerous and Misleading: On cure, lfa, hfa, and autism
Kassiane
Oct 6, 2006 at 3:23 pm
So not only does she condone murder, but she also failed to master counting?? Ethics and Math were 2 very important classes where I went.
Ms Singer, YOU’RE WRONG. Cure IS a four-letter word. And you wouldn’t know high and low functioning from a hole in the ground.
Joseph
Oct 6, 2006 at 3:40 pm
That little “low functioning” girl said “I love you mommy” to which the “high functioning” mom replied “I’ll take that.”
Lisa/Jedi
Oct 6, 2006 at 5:24 pm
As I’ve mentioned before, I find the “high functioning” & “low functioning” descriptions to be sadly short of the descriptive job they are being used for. They are better at reinforcing stereotypes than they are at illuminating the differences between individuals. The journeys of all persons with autism & autism families are far more different & far more similar than can be described with these simple & over-used terms. They reek of predjudice as well as ignorance. They oppress anyone they are used against.
Ms. Clark
Oct 6, 2006 at 7:06 pm
Feh.
Allison Tepper Singer is all about Allison Tepper Singer.
Allison saying that “cure” isn’t a four letter word (her attempt at irony??) is like the KKK grand wizard telling black people that “n*gger” used by racists isn’t an insult.
Thanks for that clarification, Allison.
You won’t be allowing any anti-cure “low functioning” autistics on to your board any time soon, will you? No, I didn’t think so.
Kristina Chew, PhD
Oct 6, 2006 at 7:36 pm
I have to wonder what her daughter would think if she read Singer’s article.
susan senator
Oct 8, 2006 at 6:08 am
It’s about time that someone addressed the whole “low-functioning” thing. How can any one human being simply be “low” or “high?” If you think about it, what a totally NT-centric way of seeing the world, all based in talking/not talking, and it defines your entire ability to function!
Now I have to blog this!
Rochelle
Nov 9, 2006 at 11:45 am
I’m new to the autistic community since my son was diagnosed in May 2006 at five years old. And, he was classified as “high functioning” in his evaluation.
I really appreciate this column and the perspective you offer on the differences b/t “high” and “low” functioning.
If I could just say that in the months following my son’s diagnosis, I’ve felt like “a fraud” in the autistic community. My son speaks very well (the reason why previous pediatricians said he “couldn’t possibly be autistic”), interacts with his classmates often, and makes eye contact frequently. And, I was told on numerous occasions, when I brought him in to doctor after doctor because something was “off” and I just knew it, that he wasn’t autistic b/c he didn’t meet specific, categorical characteristics. When he finally received the autism diagnosis in May, I *knew* that this was the right diagnosis. That he was autistic–just like I’ve known in my heart since he was 2 years old.
But, I will admit that the diagnosis was hard to understand and wrap my brain around b/c he was so *differently* autistic than any other autistic child I’d met. I’ve felt like a fraud in this community many times b/c my son isn’t in a self-contained classroom and he does have age-appropriate communication skills.
Honestly, researching the differences b/t “high functioning” autism and autism in general did help me feel more relieved that the diagnosis he received was the appropriate one. I’ll admit that for me, the discussions I read on the differences b/t “high” and “low” helped me to see the scope of autism on the spectrum. As I’m writing this, maybe the difference isn’t “high” or “low” but encouraging pediatricians, diagnosticians, and even the autism community, itself, to understand the variety on the spectrum.
Still, I completely see your point and think the rheotric of autism is one that deserves further analysis and inquiry. But, the distinctions did serve a purpose for me and did help me to see the variances of the spectrum. And, I just wanted to share my own experiences struggling with a “high-functioning” diagnosis.
Kristina Chew, PhD
Nov 9, 2006 at 1:08 pm
Rochelle,
Thanks so much for telling us about your son and how the “hfa” term was helpful in regard to figuring out his diagnosis; MothersVox at Autism’s Edges has been writing of late about her daughter’s diagnostic odyssey. I much appreciate how you place this in the context of helping pediatricians understand the spectrum, and that there are “varieties of autism,” so to speak.
Rochelle
Nov 9, 2006 at 4:47 pm
Thanks for sharing MothersVox blog… Another one to bookmark.
Autism Vox » No Magic Pill for Autism: On Risperdal and the Importance of Autism Education
Feb 23, 2007 at 2:49 pm
[…] Ever since Charlie was diagnosed with autism, we have heard talk of a cure, as in this recent essay by Alison Singer of Autism Speaks. We do not think that Charlie needs to be “cured” from autism (as I wrote in Dangerous and Misleading: On cure, lfa, hfa, and autism). We do think that Charlie needs to be educated and to be taught, and that education helps him the most and has the best side-effects. […]
Have an opinion? Leave a comment: