Here, I RAWR! About Austism Acceptance, Self-Advocacy and Quality of Life
This blog could start with a lot of hoopla and introduction about me…”Hi, I’m Amy (wakingcanary) blah, blah, blah”…but I’m hoping you’ll tell me about you. I’m definitely going to let my rage and cries for justice and humor out on this page. Yes, I think there is no better time to laugh than when the world inspires you to go all monologue-y in outrage. What better way to be heard? But I’m hoping there will be a dialogue here, that you’ll hear my roars and be inspired to answer with your own. Here, I RAWR is an invitation to you: to send your own little yop into cyber space. It’s not about me, it’s about you.
Interested? Then I’ll keep talking…
I’m a middle-aged woman with two kids, I have a lot of degrees and have collected a vast array of letters after my name–all to prove that I’m not stupid. You might think it’s funny for a PhD to admit they pursued that piece of paper because they felt dumb–but I did. Small talk and the niceties of social interaction completely baffle me–I’d rather write a research paper than sit at a lunch with strangers and try to make friends. Either that or stick needles in my eye. I struggled through life as a woman on the spectrum, without knowing the spectrum existed. I put on masks, kept silent and waited for others to speak first in order to navigate expectations, and…lost myself. Completely.
It’s taken three long years of intensive pain, loss and personal tragedy to come out the other side of the identity crisis primarily caused by my autism. I know there a lot of women out there experiencing the same thing, all in our own varied ways. My vision is to let this space where we can rant and rage and laugh–together. So I hope you’ll come along with me.
Too many of us are voiceless. Research does not acknowledge how different we are from men, and as a result the statistics tell a tale that seems to indicate women are terribly under-diagnosed. For those just joining the autism discussion, the Centers for Disease Control and Prevention (CDC) just issued some new statistics, that 1 in 88 children are diagnosed with autism spectrum disorders of one flavor or another. Yet, while 1 in 54 boys is on the spectrum, only 1 among every 252 girls is diagnosed. Given that the hallmarks of this disorder are lack of normalized social interaction, and that there are definite gender differences in social interaction, we should expect the signs of any spectrum disorder to manifest differently in boys than they do in girls. Yet, virtually all the research, including the construction of diagnostic tools and interviews, have been done on boys. Is it any wonder about the differences in these diagnostic rates?
Personally, I feel autism (in all its flavors) has its basic roots in the neurological pathways of the brain. We are wired differently, and that different experience leads to a plethora of issues the rest of the world calls a disorder. Brain wiring is biological, and the underlying pathways that could be described as “autism” should be just as prevalent in girls as in boys. Yet, until we revise the research patterns, and start including gender differences in diagnostic tools, therapies and training of autism experts, there will be many sisters out there coping, as I did, with an unknown problem. It breaks my heart that so many are so invisible, silenced and abandoned in this ignorant shuffle. None of us should be alone in this. There, I rawred right out of the gate, but it’s not about me. What do you think?