I’ve decided to do some re-posts from my Joy of Autism blog which didn’t get uploaded into the PDF version of the blog:
Does Autism Research Support Humanity or Human Deviance for Profit?
McMaster University is doing autism research. Autism Speaks raises a lot of money. Much of the money goes towards research to detect autism early or towards preventing or curing autism. The purpose of early detection is for early intervention. The concept of early intervention is derived from a medical model where the earlier diseases like cancer are detected, the better the chances of living. As a person recently diagnosed with early ovarian cancer, I can attest that in the case of mortality, I am thankful for early detection. However, in autism, the premise of early intervention isn’t that much different – children begin to undergo a rigorous process of “becoming normal,” and are taken out of regular daily life, because they are not deemed “regular.” They are viewed as sick.
So it is with skepticism and partial interest for me to read of the recent research done at McMaster University of eye tracking as seen in The Globe and Mail today. The idea is that at nine months of age, we might be able to detect autism because it is assumed that autistic babies do not follow changes in eye direction. The early diagnosis is to find those children at “high risk” for autism.
I didn’t know my son Adam was such a risk. A risk to whom? I have to assume he must be seen as a risk to society, even though our friends quite enjoy him and he is living quite well. If living well means to receive an aide to assist and a teacher who understands so an autistic person can learn, then I feel that that is where the money should be spent. I also can’t say that he would have passed or failed that eye-tracking test and it’s my guess that with the ranges of autistic people out there, the test will not be very reliable because there is not one general assumption in autism that is universal for every autistic person. Adam’s eye contact seemed okay, maybe a little inconsistent. It was his play and interests that were different – the ones that also gave him an exceptional ability to read and correct his classmate’s work because of his ability to SEE the things they cannot.
Further, “the probability of a baby developing autism,” would not apply to us. While individuals may develop autistic-like behaviours, it’s not necessarily autism. I can attest that dear Adam has been autistic since birth and probably in vitro. His wide almond eyes were curious and clever from the moment he was born. His surroundings were already an assault on his senses.
So where does this leave us? All this money being spent on finding earlier interventions to make our children less autistic? All this money being spent on tests that do nothing afterwards – they do not advance inclusion or eradicate fear of human difference so that our children receive fair and equal education and opportunity. No one is really working to understand and respect how autistic people learn so that our kids can become part of the world. No, early detection is still eerily angled at eradicating human difference.
In her essay Age, Race, Class and Sex: Women Redefining Difference, Audre Lorde writes:
“Much or Western European history conditions us to see human differences in simplistic opposition to each other: dominant/subordinate, good/bad, up/down, superior/inferior. In a society where the good is defined in terms of profit rather than in terms of human need, there must always be some group of people who, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. Within this society, that group is made up of Black and Third World people, working class people, [autistic and other disabled people], older people, and women.” [Brackets mine]
She notes how it is the underclass, or oppressed groups, which autistic individuals have described themselves, that are expected to bridge the gap, change, be cured, act normal, rather than society who also makes a concerted effort to understand, accommodate and accept difference:
“As a forty-nine-year-old Back lesbian feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself part of some group defined as other, deviant, inferior, or just plain wrong. Traditionally, in American society, it is the members of the oppressed, objectified groups who are expected to stretch out and bridge the gap between the actualities of our lives and the consciousness of our oppressor. For in order to survive, those of us for whom oppression is as American as apple pie have always had to be watchers, to become familiar with the language and manners of the oppressor, even sometimes adopting them for some illusion of protection. Whenever the need for some pretense of communication arises, those who profit from our oppression call upon us to chare our knowledge with them. In other words, it is the responsibility of the oppressed to teach the oppressors their mistakes. I am responsible for educating teachers who dismiss my children’s culture in school. Black and Third World people [and autistic people] are expected to educate white people as to our humanity. Women are expected to educate men. Lesbians and gay men are expected to educate the heterosexual world. The oppressors maintain their position and evade responsibility for their own actions. There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.” (P.p. 114-115 Audre Lorde, Sister Outsider, from her essay Age, Race, Class and Sex: Women Redefining Difference)
Rather than focusing research on eradicating difference, it should serve to examine the way we come to base our research on human deviance and the way we include autistic people in participating in research and on boards of directors. (Must I mention that no school board here in Ontario has an autistic person on it??) “Too often, we pour the energy needed for recognizing and exploring difference into pretending those differences are insurmountable barriers, or that they do not exist at all. This results in false and treacherous connections. Either way, we do not develop tools for using human difference as a springboard for creative change within our lives. We speak not of human difference, but of human deviance.” (P.p. 115-116)
We do not wish to refuse to see the challenges that face autistic individuals, but to re-imagine disability and autism. We spend so much of our energy mourning, eradicating, detecting and in the meantime, our children get locked out of schools, even “special ed” schools, or they can’t go to camps with shadows. They are not allowed to go to school with aide dogs or devices. They are viewed as a disruption to the classroom. The barriers that exist do not lie within the autistic individual, the barriers lies in attitude. We spend so much money to re-affirm that autistic people are less valuable and more deviant and yet more prevalent than ever before. Autism Canada has mimicked the Autism Speak’s style commercial to make autism appear like a horrible epidemic. They shamefully have objectified the autistic individual in order to raise money. Adam and every other autistic individual need not be objectified in order to be viewed as society’s surplus, or an object for research funds. So far, I’ve found little research that has actually shaped the lives of autistic individuals for the better.
Adam is the best. He works hard, he is smart, and he can type now. He is human. He is different AND equal and once our autism research is developed on that premise, maybe, just maybe our children will no longer be used for profit as the “surplus members of society,” bur rather, be viewed as valuable and able to contribute to it.
Audre Lorde, Sister Outsider: Essays and Speeches, Toronto: Crossing Press, 1984.