Saturday, September 29, 2007

Advice for AS children given by AS adult

Parents of children with AS, this is a question for you. I was recently approached by a special ed teacher at one of the local middle schools; she suggested that after I've learned more about AS, which is the process I am in right now, that I come talk to the children, possibly about self-advocacy.

If an adult who has AS were going to speak to your AS child, what sort of advice would you want them to give, or what type of behavior would you want them to model? I don't have children of my own so this is outside my frame of reference.

In some ways your children will already be at an advantage by virtue of a diagnosis that was unknown when I was their age (doesn't saying that make me feel "old"!) So, many of the interventions (and hopefully the supporters and advocates) will already be in place. I would like to address needs that are not already being met, if it is in my power.

If you've suggestions I would like to hear them.

Originally posted in September 2007 to DailyStrength.org.

Sunday, September 16, 2007

A day that I buy books is a good day!

There were two books I wanted, specifically addressing women's issues with A.S. -- "Women From Another Planet? Our Lives in the Universe of Autism" by Jean Kearns Miller and "Asperger's and Girls" by Tony Attwood.

Each of these books is actually an anthology featuring the writings and experiences of various women who actually have AS or autism. I'd been looking forward to reading these books for precisely that reason.

I browsed a few titles online before making my selection. One of the books I'd been considering was "Solutions for Adults with Asperger Syndrome -- Maximizing the Benefits, Minimizing the Drawbacks to Achieve Success" by Juanita P. Lovett, Ph.D. It sounded pretty promising at first but the author blew it for me in her introduction.
"Rather than to always use the awkward he or she, him or her, himself or herself, and so on, I've chosen to rely primarily on 'he' and 'him.' I made this decision because the majority of people I have worked with who have AS are male, and, currently, there are more males being diagnosed with AS than females, although I believe that is more an artifact of the diagnostic criteria than the truth. The diagnostic criteria will likely be revised as we know more about AS, but at present, the ratio of males to females being diagnosed with AS is 4:1."
So what this person is saying to me is 1) that she has next-to no experience working with AS women and 2) she feels justified in dismissing the existence of one-fourth of diagnosed cases because, as far as she's concerned, numbers matter and not people. Not exactly an argument for confidence in her ability to dispense advice.

I don't want to discount the experiences of men with AS because that would be falling into Dr. Lovett's trap of seeing numbers (or in this case, genders) and not people -- but I really do think, as a woman, it's important to raise the profile of women with AS since there appears to be such a disparity in rates of diagnosis and in dollars and resources that are allocated to research.

I am very grateful to authors like Temple Grandin and Liane Holliday Willey and the authors whose writings are collected in these two books because if anything will help raise the profile of women with AS, it will be the voices of women like these who address the challenges and rewards unique to women with AS.

As it says on the back cover of "Asperger's and Girls," "Let's initiate a 'No Girl Left Behind' movement in the world of autism!"

Originally posted to DailyStrength.org