Monday, February 8, 2010

On Autism and Ostracization: Gomey's Plight

If you have an illness outside the typical scope of understanding, you are marginalized, disenfranchised. As a teenager, I knew I was different from my smiling, happy friends. Inside, I felt dead and unfeeling, tired and lonely. Outside, I made sure to act like everyone else - not fitting in was not an option. I was diagnosed with "clinical depression" which, even in 1997, was not just a diagnosis, it was a life sentence of sorts. While I have hopes things have improved, people with depression (major, clinical, situational, whatever reason) are still misunderstood and shunned from the mainstream. Because I didn't feel like hiding a part of my existence - that I had an actual biochemical imbalance, I decided to share my experience with classmates during prayer. No, I wasn't religious, but I went to a parochial high school and in each semester's required religion class (which included world religion, ethics, etc), each student did a prayer.

It did not need to be religious. It could be about a pertinent issue, or an excerpt from the bible, or a made-up offering of kind thoughts and feelings. I made mine about depression. Every student received a sticker with different colors. I had every student stand up. Then I asked all the students with, let's say, red stickers to sit down. These were the folks who did not have the diagnosis of "depression" (I included major depression, clinical depression and "bi-polar"). The students with the blue stickers were undiagnosed depressives. The students with the yellow were the young people who attempted suicide and those with the orange stickers succeeded. I can't remember the percentages but they were ridiculously high and tragic. I shared my experience with depression and, well, for that entire period we talked about mental illnesses and suicide and the tragedy of NOT speaking up. Several students admitted their own troubles with the illness, while a couple others recognized the symptoms in themselves. I felt so empowered and, well, I didn't feel so alone.

My depression lasted through college. And then, it lifted. When I get depressed now, I know it is what most people experience. It's not an abnormal response to hormones or an "imbalance in the brain"; it's not the natural response to a tragedy or incredible stressor. It just is. I am not ashamed to talk about it, but I am ashamed of our society's ignorance and ignoring of it. Progress has been made, for sure, depression is not as stigmatized as it used to be but still it's not like you can comfortably open a conversation with "Hey, I'm clinically depressed and I like Beethoven." And goodness help you if you try to get your own health insurance because, well, you won't be able to. Just try it (I did - no longer depressed, totally healthy, and I was told time and time again that health insurance coverage wasn't possible because of "pre-existing"conditions....which also included allergies,by the way).

Even without depression, we have other people to shun with other disorders we don't understand. I was reading on A Midwest Activist about a 19-yr-old young man in Canada who has, for some unknown reason, been sent to the formerly infamous psychiatric facility, Hôpital Rivière-des-Prairies. You can read the entire saga at Action for Autism.

Basically, a social worker is accused of undermining the years of care and positive assessments previously given by other social workers and decided that this 19-yr-old young man, Gomey, is suicidal and a danger to himself and others. His crime appears to be autism. Because this is a one-sided portrayal, I cannot say with any amount of certainty if the accusations are true...but my own opinion is that they have no reason to lie (whether they have a reason to omit some information or exaggerate is up in the air, of course). After reading This Much I Know is True by Wally Lamb, a fictionalized novel that offers insight into how a person might end up in a psychiatric hospital and the sadness therein, I'm inclined to believe the concerned family, friends and supporters of Gomey. There's my bias. If I'm wrong, I'm okay erring on the side of Gomey and his family.

People with autism are socially ostracized, much like people with depression were and, to some extent, still are disenfranchised. Clinically depressed people can hide their "illness"in much the same way that some with autism can fictionalize how they relate to others (that is, they can act well). And just like the person with major depression truly cannot function without assistance there are those with autism who cannot function without assistance. It's a scale, a spectrum and it's not black and white in either case. But we don't want to talk about the elephant in the room, yet we're happy to malign, mock, isolate these people. Sometimes they need help (don't we all!) and many times they don't - they just need support and understanding and a little bit of respect. We don't understand everything there is to understand about autism and we're learning more stuff each year.

I think Wired Magazine did a great piece on this in 2008, The Truth About Autism: Scientists Reconsider What they Think They Know, by David Wolman. It's a good, easily understandable read about a seemingly complex medical and societal issue.

Back to Gomey. He's been at this psychiatric hospital since January 27th. In fact, he was carted to this facility by 6 police officers. As is standard at many psychiatric hospitals, he was denied contact with his family until the Monday of the following week, that is five days after he was confined to the facility. He has not seen his family very often and has not, to my knowledge, consented to this confinement (and according to Action for Autism, the on-site doctor has stated Gomey is not in any danger of self-mutilation or harm to others...not actual documentation yet on that). For a person with autism such that they have a hard time relating to others and they have only been capable of interacting in a "socially acceptable" way with family, it must be nightmarish to be in a place where you don't speak the language (literally, he's a primarily english speaking person in a primarily french speaking hospital), don't know the people and perhaps only partially understand why you are there. Everything you have known for the past nineteen years is gone. So, no matter what the truth is, my heart and sympathy lies with Gomey and his predicament.

I'm hoping that the family will do their due diligence and get media attention, besides blogs, twitter and facebook. I'm unfamiliar with the newspapers of Montreal, but a cursory glance shows at least one major one and some smaller ones. If Gomey is being considered nonviolent by doctors and staff and is therefore being held against his will or without consent, then that needs to be rectified post-haste. A little media scrutiny couldn't hurt. Best of luck to them.


YesBiscuit! said...

I had an utterly ridiculous phone conversation recently after I applied for a life insurance policy. My questionnaire answers about depression and anxiety treatment triggered this phone call from the insurance company to investigate further. So I'm trying to explain to this stranger on the phone that there was not a "start date" to my depression nor an "end date". Frustrated, she finally said, "Well do you feel sad?" I was half laughing, half angry enough to throw the phone. I do not expect the general public to have much of an understanding of mental illness but if you're getting paid by an insurance company to investigate, I would have thought you'd be at least slightly educated on the subject.

Nichole said...

Thanks for this. I can't imagine how this family must be feeling right now.

And kudos for sharing your story regarding clinical depression. My mom is clinically depressed, and I suffer from depression driven by anxiety disorder and PTSD. It's not something I typically talk about because you're right, people still don't understand.

I *LOVE* your presentation with the stickers. Brilliant.

PoochesForPeace said...

great post, thanks for sharing. I work in the field of trying to eradicate stigma. Our funding for suicide prevention education just got cut to be used for "unintentional deaths" even though suicide rates are higher than homicide...