Saturday, December 08, 2007

Ransom Notes campaign

NYU Child Study Center has an awareness campaign called 'Ransom Notes'. Here's what I emailed to them in reply.

On your webpage, I noticed the 'Ransom Notes' awareness thing, with stuff about ADHD, Asperger Syndrome, Autism, Bulimia, Depression and Obsessive-Compulsive Disorder.
I am diagnosed with PDD NOS, which is a condition related to Asperger Syndrome and Autism (in my case I'm more AS-like), and with PTSD, which in my case results in depression and mild OCD-like behavior.
I would like to say clearly that there is an important difference between the two types of conditions I am diagnosed with. PTSD is something I have, which causes me serious psychological pain and does feel a bit like 'being kidnapped'. In contrast, PDD NOS is something I am, which affects my thinking in such profound ways that I cannot imagine it any different, has many positive effects as well as negative ones, and only harms me in making me fit poorly within my environment - change the environment and I'm fine.
Portraying conditions like Bulimia, Depression and Obsessive-Compulsive Disorder as kidnapping a child is a vivid analogy for how it really does feel to have those conditions (I'm basing this off of both personal experience and personal accounts I've read by other people). Portraying conditions like Autism, ADHD and Asperger Syndrome as kidnapping a child is offensive to those affected by those conditions, and encourages others in an erroneous and harmful perception of them. That's not the kind of awareness I'd like. In fact, treating fundamental brain differences like they are separate from the person and a terrible thing is part of the reason I have PTSD (I experienced abuse in two very distinct settings, one of which was well-meaning but very harmful abuse from my teachers, who thought my differences were something wrong with me).
Worse, your descriptions of what the supposed 'kidnappers' are making the ADHD, autistic and aspie kids do is offensive as well. ADHD behavior is only a problem in certain circumstances. Studies have shown that if a teacher is highly engaging, less children meet behavioral criteria for ADHD - because ADHD kids are not incapable of paying attention, they just need more stimulation. And the idea that it's a detriment to others is a concept frequently used to justify treatment that harms the recipient or at the very least doesn't benefit them. It's justified with abusive behavior, but it is not justified when the person is merely acting annoying or weird.
Regarding the ability to interact with others, I have yet to meet a single child, with any disability, who was incapable of interacting with others - including many much more disabled than any autistic kid. I know one boy with severe CP who can barely move and can't speak, but he looks at things and groans to communicate. Interaction is a two-way street - he can't interact with someone who ignores him, but that's not really his inability. And social isolation, firstly, is in the eye of the beholder. It's likely in the month of December I will only spend one day with anyone else my own age. But I'm not lonely - I don't need interaction that much. Other times I do want friends, but no one wants to be friends with me. That is not a social impairment on my part, but their own intolerance of diversity - after all, openly gay teenagers often have trouble making friends too.
As for caring for yourself, who in our society really is independent? Apart from hermits living off the lands (ironically, many of them are probably on the autistic spectrum) no one is. But only if you're dependent in the 'wrong' way does it ever get noticed. My father can usually fix his own car. Most people can't, so they hire a mechanic. This is not considered a disability. Most people can tell time within about an hour or so, and can certainly tell when mealtime comes. I can't (in the absence of external cues). This is considered a disability. In another society, however, it might be the opposite.

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Blogger stevethehydra said...

It's interesting how separately from each other you view autism/ADHD/etc and depression/eating disorders/PTSD/etc. I think i'd *broadly* agree with you, but i do also think they are all interlinked, and people with autism (etc) share a lot of experiences with people with the "other" class of disorders...

Something i often think about is how exactly to disentangle (in my own life and in general) the actual differences inherent in autism from the depression/PTSD that arises from living as an autistic person in a non-autism-friendly society - it's my strong suspicion that many things commonly regarded as "symptoms" of autism, possibly even some of those which are regarded as "diagnostic criteria" for autism, are actually traits developed as a result of living in a society which does not accept neurodiversity, and can more accurately be attributed to reactive depression or PTSD...

8:58 AM  
Blogger Andrea Shettle, MSW said...

Speaking as someone with ADD, I agree with your letter. I'm certainly not someone who has been "kidnapped" by my ADD.

On one hand, yes, ADD has had certain disadvantages for me. But I think many of the more frustrating disadvantages could have been prevented if I had simply KNOWN about my ADD from a much earlier age. (I was not diagnosed until age 26. But I think certain things in my life would have gone more smoothly if I had been diagnosed at some point before I entered the 4th grade, simply because my ADD would have been accommodated for better, and I would have had a better basis for understanding WHY certain tasks that seem to come so easily for other people of equivalent intellect and skills to mine nevertheless seem to be more difficult and time consuming for me).

This still leaves certain disadvantages I'm left with (near-nonexistent housekeeping skills, for example). But I think my ADD has ALSO given me certain advantages that I would be hesitant to give up, such as possibly a part of my creativity. I happen to value my creativity. I would not want to be "cured" of my ADD if it meant putting that characteristic at risk.


6:24 PM  
Blogger Ettina said...

Considering the schools I went to, the earliest I would have wanted to be diagnosed autistic was 10 years old. I think I was actually better off with my first school having no label for me, and that's saying something.
The difference I see is between things that feel like a part of me and things that feel like they're working against me. Like the difference in feeling between the weight of your own limb as opposed to something you're carrying.
I also see two levels of discrimination. One level is harmful to anyone with any kind of disability or illness, regarding of the nature of it - for example, the stigma of mental illness hurts autistics and people with PTSD, despite the differences in what it's like to have those two. The other is treating one category as being equivalent to another category. (Another example of this would be comparing autism to cancer.)

7:10 AM  

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