Busting Myths About Autistic Girls and Women, One Unicorn at a Time
We Unicorns seldom have a chance to gather in the magical wild lands of Manhattan, but thanks to a press pass arranged by Sharon daVanport, president of Autism Women's Network, I got to meet another of my species at a panel entitled Autistic and Female: They say That's Rare and so Many Other Things at the Disability Studies in Education conference at Hunter College, on May 27.
With a generous dollop of whimsy that autistic people are alleged to lack, Dr. Grace, an assistant Professor with the Diversity in Learning and Teaching Department and research methodologist at Louis University in Chicago, used her unicorn analogy to expose the myth behind the assumption that females with autism are rare. In fact, Dr. Grace maintains, autistic girls and women like her, and like me, are everywhere, but vastly under-identified and under-served. In a critique of theories, like Dr. Simon Baron-Cohen's suggesting "extreme male minds" and lack of empathy in autism, she noted both logistical and political underpinnings of the assumption of our rarity. She included in her overview of these theories comments on gender, class, race, and other biases that can block autistic girls and women from being recognized and accessing what they need.
It was in these comments that Dr. Grace's true unicorn nature began to shine through. She is rare, not so much as an autistic woman, or as a female scientist, but as a female autistic research methodologist, who undoubtedly has a unique perspective on the methodology behind the research of such widely discussed theories. Dr. Grace and her colleagues from Louis University, Dr. Linnea Rademaker and PhD candidate Jason C. Osmolak, were thoughtful and generous in their interaction with the audience about topics ranging from empowering parents to challenge educational norms to the importance of co-research in building trust between autistics and scientists studying our experiences. But oh, for a bit of unicorn or other magic to stop time and discuss at length Dr. Grace's unique view of how Dr. Baron-Cohen's information-gathering techniques may or may not have informed his findings!
Sometime soon, I hope Ibby Grace and I will meet again and chat over tea and cookies about that subject to our hearts content. You know, just standard girl-talk, one unicorn to another.
About the Autor: Carol Greenburg is the East Coast Director for the Autism Women's Network. Carol is Executive Director of New York Special Needs Consulting, is a special education consultant and professional non-attorney advocate in private practice serving the five boroughs of NYC and beyond. Her unique perspective as an adult with Aspergers Syndrome, and as the mother of a severely language-delayed autistic child, informs all of her work. She is also one of the editors at The Thinking Persons Guide to Autism. A prolific writer of essays on autism and frequent speaker at National Conferences, area universities, parent support groups and community based organizations, she is a member in good standing of Council of Parents Attorneys and Advocates (COPAA).
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- Disability Studies in Education conference at Hunter College
- Ibby Anderson-Grace
- women and disability
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Carol Greenburg, I can't wait! You're on for tea and cookies next time you're in Chicago or I'm in New York! Thanks for the lovely article!
Ib
What a wonderful thing to read about -- a female scientist studying autims who is autistic! Imagine that! I have grown so tired of reading about "autism research" conducted by NTs. We know that the viewer of object changes the outcome of the viewing via the act of viewing, so when an NT is "studying" me and my kind with all their assumptions, I wonder how we can take much of what they "find" seriously.
I am sorry that the medical model gives out laelbs' because they tend to stick like supa glue! I was very privileged to be the recipient of the love and welcoming that came from Nicholas. What a beautiful being of light he is! The first person to greet me at Heartland was Nicholas and he was such a gracious being, I loved him instantly. Autism is called a disability. I have worked in the Disability field for several years and I always used to ask: Who are the ones with the disability? And the answer is: Those of us that think we are so called normal' we have the disability because we put the laelbs on those who don't fit into the box' called normal'. You know what our disability is: BLINDNESS ! We do not see the truth and the truth is we are all the same, we are nothing but LOVE AND LIGHT in our essence, therefore there is no difference between any of us, after all we are ONE in essence. What we see out there is simply the judgements of our own minds! We see what we project onto the screen of life.So to me Nicholas was the joyful reminder of one who is without a disability because he presented himself as so pure and simply innocent. Yes, Nicholas is a blessing to behold!Thanks for shining your light on me Nicholas, you are beautiful!Luv Eileen
That is a real relief to hear about. Thanks for sharing this. I tried till I was exhausted and gave up to make a dent in this idiotic assumption. I have very intellgent friends who buy it hook line and sinker, while talking TO ME. The capacity for so many "Neurotypicals" to buy BS is frightening, and they will only change their minds if someone they deem to be an authority tells them to. And since NT's live in hierarchies, they are the ones who seek the power positions. I am quite sure now that Autistic people are not the ones with the bigger disability. That's not meant as a dig, that's really what I've discovered.
Thanks again for your blog!
, “well you know, your son is autistic”. (Certainly not the best way to be told) but, at the time it was such a rielef to finally know why my child was different. I now had an explanation for why he had enormous meltdowns, or did strange things with his hands. Why he stopped napping before his older brother did, or was so rigid, or had such problems with telling us what he wanted. It helped explain so many things. Our son was 10 at the time. We had been seeking an answer for over 6 years! He is now 21.My son is so very special in so many ways and I know that we are blessed. He is probably the happiest person I know. He is smart, has an incredible memory, and is an accomplished rider. He has given me back the joy of plants. I think he is an inspiration and gives hope to many of my friends. This man-child is an enigma: even to me. It amazes me that he is about to earn his AA, and start working on his BS in the fall. I never ever would have dreamed this possible. Did I say ever? I would have said never 10 years ago. He is so smart, yet, I still have to remind him to eat, or dress appropriately. He doesn’t drive, or really understand money or long term cause and effect. He just doesn’t get that everyday stuff to be able to live independently of us. I often struggle with the social expectations for our children He has never gone to a dance, never been on a date and his friendships are limited. It makes me so incredibly sad. His entire social life revolves around ours. Quite frankly, I think that he would be and is genuinely content to just do his own thing. He doesn’t seem unhappy. In fact he is one of the most laid back people I know. All events seem to be singular, short-lived and are forgotten almost as quickly as they happened. The other day it occurred to me that maybe it wasn’t such a bad thing to go thru life not carrying the weight of the world on your shoulders. I often wonder if it is better to have a child that is somewhat self-aware or is it better to have a child that is in their own world all the time and hasn't a clue? (or one like ours that at times is somewhere in between?) So, I ask, whose need is it for all this social stuff anyway? Mine or everyone elses????I separate people into two groups.. those that “get” it and those that don’t. I think every parent of an autistic child understands this. It is almost a given that when my friends come over, my son will be there. And, many times when we go out, the same. It is almost as if we are a package deal. They seem to take it in stride. I consider myself lucky to have such good friends. (but wonder, if and when they will tire of this..)I think my biggest fear in life is what will happen to my son after I am gone. I think we all worry about this. It literally keeps me awake at night. Those that know me, know I do not sleep!I have always thought that a person shouldn't be (or wouldn’t want to be) defined by a diagnosis or a disability. But, I think that autism by its’ very nature has defined my son and my family. Somehow along the way, without even realizing it, I have become who I am, because of who my son is; a grown child with autism. If I were to reflect on each day, my thoughts and actions always seem to be guided by this child. He is always on my mind and in my heart.
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