1) Identify, in a few sentences, the publication you're looking at (something local, in the Twin Cities area -- can be online or in print), the problem you see in the way science is being deployed there, and why you think it's a problem you think it's potentially dangerous or harmful enough to merit your time in addressing it. The point of writing this little meta-commentary, before writing the text of the letter itself, is to inform your colleagues about what you're trying to do, so they can best evaluate how well you did it.
I've been thinking, reading, listening to the dialogue around Asperger's this week. I'm always interested in Asperger's story as one of my favorite people had Asperger's (as you will read). Because this favorite person died about a year ago, the stories are actually really hard for me to listen to. I kept hearing the "Aspies" talking about their conditions with pride and hearing the relief they feel in knowing others like them, which is really inspiring. Then I'd read comments like the one psychologist (?) (I can find it for you but am just loosley referencing here) whose snide remark about "Sorry if we hurt anyone's feelings" kept popping up in articles. It seemed so belittling and beside the point. The point of the DSM (I hope) is to get people the help they need. Right? So why, in a time when our governor who won't tax anyone, and in a time of limited acccess to health care, and a time when autism in general is on the rise (maybe?), is the debate about "whether Aspies are elitist." Ugh. So let me know if I get to that at all here. I use my personal story to frame the question because I feel that is often an effective strategy in letters to the editor~~but at the same time because I think personal experiences are what often compels someone to write one in the first place, and it certainly has framed my interest in Asperger's.....
I think its still too long....and I don't know that I am addressing faulty science per se, but more the questions that society is asking...and not from a particular publication, though I think I could come up with one....am thinking of sending to Star Tribune or?...I am still working that part out.
Any feedback is welcomed. Thanks!
2) Write a draft of your letter to the editor.
What makes a diagnosis "elite"?
About three weeks before my nephew, Matthew, died at pretty much exactly 9 and 1/2 years of age, it was Thanksgiving and my family gathered at my parent’s house in Northern Wisconsin. In the evening we watched The Golden Compass. Matthew curled up with my husband on the couch and during the battle scenes told us, “don’t be scared, it’s not real.”
Matthew came a long way in his short life. When he was in pre-school his teachers noticed signs of what eventually led to a diagnosis of Asperger’s Syndrome. Traits “typical” of Asperger’s include difficulty with social interaction, high intelligence, intense interest in particular subjects and a huge vocabulary--the latter qualities being what leads people this week to claim it is a disorder more advantageous than others. By the age of 9, Matthew was able to empathize with other’s emotions, reassure us about a scary movie, and relate to other kids, in his own way, but his ability to relate took a lot of work. After a rocky start at a school which had NO Special Education services, he switched to a school that had more kids like him and more adults to help him blossom into a confident and engaging kid. He spent time with other kids who have similar syndromes, and spent hours practicing “social stories” with his mom and dad.
This week the focus has been on whether Asperger’s is just an elite title for a segment of the Autistic population. What really makes a particular diagnosis “elite”? Between Pawlently’s non-taxation and un-allotment strategies, perpetual underfunding of mandated Special Education Services by the federal government, and ___% of our nations’ children living without healthcare, it strikes me that anyone who has access to diagnosis and treatment will soon be part of the elite---an elite of people with access to human services. Why isn’t this the center of our dialogue?
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also i am reeeaaallly curious what descartes would have done with 150-200 words....
ReplyDeletenew version!
ReplyDeleteWhat makes a disease Elite?
I am writing in response the the 2/11 article Aspies' cling to Asperger's as an elite diagnosis, as well as to recent news of Gov. Pawlenty’s budget proposal.
My nephew had Apserger’s Syndrome. Sadly, he lived only 9 short years. His death was unrelated to his Asperger’s, but I share his story because his short span of life showed remarkably the positive effect his diagnosis and resulting services had in his life--a short amount of years, but an immense amount of growth.
When he was in pre-school his teachers noticed signs of what eventually led to a diagnosis of Asperger’s Syndrome. Traits “typical” of Asperger’s include difficulty with social interaction, high intelligence, intense interest in particular subjects and a huge vocabulary--the latter qualities being what leads people this week to claim it is a disorder that is “elite”. Recent articles seem to imply Asperger’s is a walk in the park that leads you to fancy degrees. This is ignoring the difficulties of living with Asperger’s, for example extreme sensitivity to light, sounds, or smells, that lead to unpredictable outbursts and feelings of physical pain.
After a rocky start at an elementary school which had few Special Education services, my nephew switched to a school that had more kids like him and more adults to help him blossom into a confident and engaging kid. He spent time with other kids who have similar syndromes, and spent hours practicing “social stories” with his mom and dad. By the age of 9, he was able to empathize with other’s emotions and interact other kids, in his own way. This ability to relate took a lot of work, and help from many skilled adults in his life. The way he grew and overcame challenges in his short years is a great testament to the power of appropriate education and services. Is the purpose of the DSM not to connect those who differ from the “norm” with the assistance they need?
Last week the focus was on whether Asperger’s is just an elite title for a segment of the Autistic population. This week Minnesota’s headlines cite Pawlenty’s proposed budget cuts, which focus heavily on health and human services. Amidst the accusations that “Aspies” are “clinging” to an elite disorder, I wonder, what really makes a particular diagnosis “elite”? Between non-taxation methods and un-allotment strategies, perpetual underfunding by the federal government of mandated Special Education services, and 11% of our nations’ children living without healthcare (according to the 2008 Census), it strikes me that anyone who has access to diagnosis and treatment, let alone services, will soon be part of the elite. Why isn’t this the center of our dialogue?
Hi Julie,
ReplyDeleteI really like your response to this article. I know you mentioned trying to maybe cut down on your personal story and adding a bit more science to it, but I think your story really supports your argument more in this instance than just scientific facts would. You have a unique experience that many people don't because you personally knew someone with Asperger's.
Overall, I think it's well-written and will probably connect to an audience who also have had personal experiences with Autism and are battling with the government/majority of society's views/treatments of it.