Thursday, May 08, 2008

Intellectual or Developmentally Disabled?

A lot of people think that for any one group, there is a single stereotype for them. This is why those stereotyped as 'able disabled' are so often described as 'breaking stereotypes'. They think there is only one 'disability stereotype', at least for any particular disability.
Anyway, one pattern I see often, which is really ironic, is the contrast between the 'intellectual' stereotype and the 'developmentally disabled' stereotype. These are viewed as opposites, complete opposites. This can get really confusing when discussing autistic people, for whom the reality is a mix of those two stereotypes with other traits thrown in.
One scenario is an 'intellectual' parent, who identifies as such, and hopes to have a child like them. They've accepted all the values that serve that stereotype, such as valuing education, dedication, knowing a lot, acting the expert, etc. And then they have a child, who is actually a lot like them, but with many of their traits intensified, and this child gets diagnosed with autism, and considered mid to low functioning. So, like most kids described that way, the focus is all on this child's weaknesses, and they're certainly not considered anything like an intellectual. Their stereotyped as a 'developmentally disabled' person, which is the exact opposite.
So their parent thinks this child is so different from them. They can't understand the child. The child blatantly doesn't show appreciation of all the 'intellectual' values, by acting so disabled and unaware of things. (In reality, they may be very aware and value many of the same things, but this is not seen.) So this parent, who has a view of themselves that focuses very strongly on certain traits and denies other traits, and an opposite view of their child, has a major barrier in accepting and relating to their child, even though they're actually very similar people. In order to value their child while fitting stereotypes, this parent would have to value completely opposite traits to what they've learnt to value in themselves.
Another pattern is a parent of an autistic child stereotyped as 'developmentally disabled', who runs into a person identified as autistic who shows prominent 'intellectual' traits. This may be a higher functioning autistic child, or an autistic self-advocate (especially if they are, in reality, relatively higher functioning). It's especially pronounced if they're a self-advocate or otherwise breaking the 'client' role (eg a helper). The parent immediately thinks 'you're nothing like my child'. Even though, in reality, they may be a lot like that person's child, either having grown and developed since that age, or differing mostly in superficial ways (eg, being better at putting on an NT mask or having better verbal skills).
And then there's the high functioning autistic person, who has been labeled with a developmental disability, but in most people's minds, they're blatantly 'intellectual', which is of course the opposite. So either their disability gets denied completely ('excuse to be a jerk', for example) or they get told that it can only affect them in certain very circumscribed ways, as if they're only autistic when at a party, or when someone flirts with them. And they get denied needed services because they don't fit the model of someone needing those kind of services. And they get overt and covert pressure to play along, to deny their disability and think of themselves as 'not really disabled'.
I'm pretty clearly in this category. As I was growing up, my differences were called giftedness or PTSD. When I first started thinking I was autistic, piles of people said I wasn't. 'There's nothing wrong with you', my father's cousin-in-law said. My mother said much the same thing. And I went on with all the coping skills I'd learnt to deny or disguise my differences, so that I really did act only slightly autistic. But despite them, I resonated so much with descriptions of autism that my self-perception steadily became more autistic.
First I thought I had a lot of 'pseudo-autistic' traits that were really trauma. But, around the same time I started realizing giftedness included a whole lot more than knowing lots of facts, I realized I had a lot of inborn autistic traits, and started calling myself BAP or a 'cousin' (as a gifted person). Then I noticed that BAP people generally were a whole lot better able to fit into society than I did, and that gifted people who felt as different as I did had IQs much higher than me, and most gifted people in the 130-150 range fit in better than I did. And I considered myself 'maybe autistic'. Then I was officially diagnosed PDD NOS, and I knew I was autistic.
But it didn't stop there. At first, I considered myself much higher functioning. But gradually I started realizing that difficulties others had were things I'd been denying and trying to hide, and that things I thought I was high functioning enough to do took much more work than I actually thought, and how blurry those lines really are. And more and more I switched from the 'Geek Syndrome' view (a modified form of the intellectual stereotype) to viewing myself as being a developmentally disabled person as well as an intellectual. At first my identification with developmental disabilities has been in acting lower functioning than I am.
First, I'd play pretend where I was a low functioning autistic person (my mom was uncomfortable about this, thinking I was making fun of them, but I wasn't). When working with developmentally disabled kids, I'd be so focused on them that I forgot myself. It was like reading a book, and the kid was the star character. Then I joined a youth group for developmentally disabled teens, and started acting more obviously autistic when with them, but at first I felt embarrassed to discuss my interests, feeling a bit like a 'fake' because I was so smart in those ways. So I'd stim in front of them and admit when I couldn't do something, but whenever I caught myself chattering about my interests I'd stop.
I'm still switching between 'intellectual' and 'developmentally disabled'. When I'm recognized as disabled in public (not in the form of self-identifying as autistic while being overtly high functioning, but someone actually noticing me having trouble and realizing I'm disabled without me telling them) I don't show them how smart I am. When I've chattered about my interests to a stranger and impressed them with my intelligence, I don't stim in front of them. It's something I've been working on, but only in a few settings can I show both sides of who I am. I'd like to get to the point where those aren't 'different sides' but all together, but I'm not there yet.

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2 Comments:

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12:06 AM  
Blogger The Enterline Foundation said...

I think that it is great that you are trying to get others to understand what those who are labeled intellectually and developmentally disabled go through. I currently work with a non-profit organization(The Enterline Foundation). We are trying to build our website to be used as a resource for developmentally disabled individuals and their families. We list links to organizations that provide support, residential facilities, vocational services, and many other services. They are categorized by state. I think that if people were given more options as to how they could find help, they would not be as overwhelmed. The website is www.enterlinefoundation.org. If you are looking for resources or know of resources that we could add onto our website please let me know! Again, I think that what you are doing is great and best of luck to you! Keep us updated!

Janelle

8:43 AM  

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