"Autism Speaks" creator on Oprah
Kristina Chew at Autism Vox reports that Oprah will feature "The Faces of Autism" on April 5 (tomorrow), except those faces will be filtered through the lens of guest Suzanne Wright, co-founder of Autism Speaks. For those unfamiliar, Wright's organization is responsible for the video "Autism Every Day," which will also be featured on The Oprah Winfrey Show. The video was released in May 2006 and features a mother saying in the presence of her autistic child that she thinks about killing that child.
You can read about the reactions of autistic folks to this video here, here, and here.
Oh, Oprah.
15 comments:
That's great. As the parent of a severely autistic boy I am very appreciative of the work done by the Wrights and Autism Speaks to raise awareness about the realities of autism. There are lots of high functioning autistic persons expressing their views on the interent, on CNN and in Hollywood movies. It is about time people started learning about some of the harsh realities faced by lower functioning autistic persons.
While I don't doubt that parents of autistic children go through immense difficulties, my mind rebels at the idea of a non-autistic person designating herself as spokesperson for the realities of an entire community. Nice how this woman is able to piggyback herself into speaking engagements, television, and probably book deals on the backs of autistic children and their families.
I guess years of "Nothing About Us Without Us" have yet to sink into some people's consciousness.
I had a comment I'd worked on for hours, then the cat walked across my keyboard and reloaded the page! Grr...
I want to say at that mother commenting above me: plenty of autistics that AREN'T anything remotely like "high functioning" are out here giving our experiences, and we don't like the hateful cure-oriented stuff, either.
Plenty of parents (like Joy Of Autism) of non-speaking flamingly Autie children agree with us.
The thing that our *world* needs to know is the Autistic perspective: what life is really like for us, how WE feel about our individual traits and whether we appreciate the things resentful "curebie" parents do to us.
The world needs to know the people that keep being talked about. All they have now is the equivalent of chauvinistic men giving presentations about the problems and frustrations of having a girlfriend or wife.
There's so much I have to learn about autism, autistic folks, and the medical and educational politics surrounding their lives -- those disability politics seem pretty intense lately. But one thing I don't need more education to know is that a mother should not be filmed in the presence of her child saying she thinks about killing that child. And whatever truths that mother speaks about parental pressures and the need for support, that film of her should not be part of a national awareness program where it is one of the first things people view about autism.
For the record, Amanda Baggs of ballastexistenz.autistics.org who appeared on CNN recently has, I believe, been classified as a "low-functioning" autistic. That should say something about the classifications, as well.
yes, Amanda does say that she's been diagnosed as low-functioning. And you're right--if she's "low-functioning" then the classifications are out the window.
Like you, Blue, I have a lot to learn about autism.
SOMEHOW, there are millions of parents who deal with exactly the same things as Ms. Singer and the parents of Ashley, and we really don't want to kill or do medical experiments on our kids. No kidding.
The Autism Speaks/Ashley blogs follow a narrative that reinforces the most harmful public stereotypes about parenting a kid with a disability--that it's a life not worth living, a terrible burden, requiring desperate decisions nobody should have to make. And now Oprah will contribute to reinforcing that stereotype too. Great. Just great.
kactus
Your logic is flawed. Because one person, who also was previously diagnosed with other disorders, is diagnosed as low functioning, even though she has excellent communication and cognitive skills, it does not mean that the classifications scheme is out the window. If anything it raises the question of whether that person is properly diagnosed.
My son is severely autistic, low functioning with limited verbal abilties. High functioning autistic persons on the internet do not speak for him and do not have the right to speak for him.
autism reality: fair enough. I do chafe, however, at classification systems that have the potential to do harm through misdiagnosis. Will a low-functioning diagnosis impact that person's access to education, recreation, or services? And especially if that diagnosis was wrong? Probably you as a mother would be able to answer that more effectively.
kactus
I am a father but my wife will get a chuckle out of your innocent mistake.
Our son's severe autism diagnosis has not had a negative impact on his access to education. To the contrary it made us more determined to fight hard to ensure that he received effective education and he has benefited greatly from ABA based instruction.
The website autistics.org has some stuff in its library about the false "low/high functioning" dichotomy, as well as a whole bunch of other valuable writings about autism.
I also note that when people claim that so-called "high functioning autistics" (often defined as any adult autistic who can write and disagrees with the person speaking), it's often so that their opinions can be dismissed as irrelevant. It's a political tool often used by those who wish to disempower autistic self-advocates, of any "autistic variety." Moreover, a person who was supposedly "low functioning" as a child might very well be one of the "high functioning" adults who are dismissed because they "can't really understand." (But of course non-autistic parents and professionals can understand. Ugh.) Once you start to read about autism you really realize how much diagnostic gerrymandering goes on, often for reasons of prejudice. You even hear of people's original diagnosis being changed by bigoted professionals. There might be a valid way of dividing autistic people, but NOT by functioning categories and not by current medical practices.
Sorry, just had a few more thoughts on "functioning" labels.
kactus, you talked about "incorrect" diagnosis. But there are a few things to keep in mind. First, autism diagnosis is not like finding out whether you have strep throat. It's by nature a subjective diagnosis that's arrived at through behavioral and developmental observation, and often cognitive tests which need to be interpreted. So while the vast majority of autistic spectrum diagnoses are probably accurate, you have to keep in mind that it's still subjectively determined. And, as I tried to indicate above, which "autistic category" a person falls into is definetly quite subjective and open to all sorts of biases (except perhaps for Rett's Syndrome and Fragile X, which have clear genetic markers).
Furthermore, the category "low-functioning autism" doesn't even exist in the DSM IV, though I suppose many professionals use it anyway. Some people may use it interchangably with the "Classic Infantile Autism" category, but many people with that diagnosis are also described as "high-functioning." So, since "low-functioning" doesn't exist as a category (however ill-defined), what differentiates "low" and "high" functioning is defined by personal opinion and interpretation, nothing more. What makes a person "high-functioning"? Is it the ability to speak (yet autism reality nb has just said that Amanda Baggs doesn't really qualify, even though she doesn't speak)? Is it IQ (even though IQ tests have been proven inaccurate in autistic people)? Mainstream medicine/psychiatry can't seem to agree, really, and it's likely that if you put 20 autistic people in a room and had them labeled by five different professionals, you'd end up with five different permutations of classifaction categories.
"Low-functioning autism" is to many professionals what porn is to Supreme Court Justices--they can't define it, but they know it when they see it. We can't even begin to talk about improper diagnosis of autism categories until those categories get seriously straightened out.
Another problem is that autism is developmental delay, not stasis. But autistic people do often change and acquire new skills, and it is ridiculous to think that a person's developmental profile at age two can or should follow them for the rest of their life. Once a person is born autistic I believe they will always be so, but circumstance and their own personal developmental trajectory may make them appear "more" or "less" autistic at certain points. That's why it's wrong to stick the "low-functioning" label on anybody's forehead. It's also dehumanizing to be labeled as either "low" or "high" functioning. I don't object if parents wish to establish that their child is "severely impaired", or perhaps "nonverbal", but describing someone as "low/high functioning" is wrong. Machines function, people are more complex.
sarah
I never said that Low Functioning Autism is a DSM-IV diagnosis.
I use low functioning diagnosis because many people with High Functioning Autism and Asperger's are described as representing "Autism". It is a practical way of distinguishing the realities of someone with limited understanding of language and limited undrestanding of the world and how to function in it.
BTW "verbal" means capable of using words or using words. "Oral" is the means of expressing words through spoken communication.
If you try to deal honestly with what I posted you would acknowledge that Ms Baggs has a very impressive command of language. Many autistic people including my son do not have such a command of language. That distinguishes him from Ms. Baggs in a very important realistic and common sense way from her in terms of their relative abilities to function in the world.
You also talk about developmental delay versus stasis. You imply that all autistic children will improve their abilities with the passage of time. There is no credible evidence to support such a position. And the many autistic adults living in residential and institutional care are evidence to the contrary.
autism reality nb: And yet, there are significant parts of Amanda's life where she did not have verbal abilities, either. So did her classification change? Or was she 'faking it'?
I didn't mean to imply that all autistic children improve their skills. But many do, and it's dishonest to pretend otherwise. And yes, even those in residential treatments may have improved skills from childhood.
And while I tend to dislike assumptions about how much so-called "LFAs" do or do not understand about the world, there are other words to indicate delayed language abilities and various other impairments. There's no need at all to be wedded to "functioning" language when more respectful words exists and can be used. And I stand by my statement that no coherent definition of "LFA" exists anywhere.
sarah
There is nothing disrespectful in referring to "low functioning". I refer to my son that way because he IS low functioning. Speaking realistically is not speaking disrespectfully. The professional literature makes respectful reference to high functioning and low functioning autistic persons.
Can you refer to any studies that provide evidence that low or high functioning autistic persons improve their skills by the passage of time alone? And that MANY do as you state?
Ms Baggs has a very sophisticated command of language albeit expressed via technology. MANY autistic persons do not and that is documented by serious studies. It is a spectrum disorder and Ms Baggs is distinguished from some on that spectrum by her excellent understanding of, and use of, language. That is a practical, common sense, distinction.
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