Thursday, September 30, 2010

Parents, fishbowls, and sledgehammers

I attended and presented at the AANE Making Connections conference. The audience consisted of adults with AS, family of adults and children, and professionals.

The conference included a lot of interesting stuff. I attended a talk by neuroscientist John Gabrieli from MIT, who talked about some of what they've discovered about autism and the brain, what fMRI studied do and do not tell us about brain activation, and some results of specific studies. He talked briefly about one study that I participated in, but there haven't been enough participants to provide data. (If you are able to go to MIT to participate in fMRI studies, do it! You get paid and it's a couple of hours of work and sensory stress, but it's otherwise painless.)

I also participated on a panel called "Dating and Relationships". It was interesting participating. I shared my experiences. Another couple was also on the panel. It was a good experience. A lot of the questions from the audience were people asking specific advice about dating and issues for people with AS. Like how to approach dating, how to tell when someone isn't interested, or is interested, and how to make decisions regarding relationships. I am told I answered some of the questions well, so that was positive :)

I also chatted with a mom of a tween girl who was interested to hear about my experiences growing up. I have talked with parents before. In general they are anxious about how growing up will be for their daughter, and what the possibilities are. They want to hear about my experiences of university, and working, and relationships. I try to tell about both positives and challenges. About how I experience the world. My opinion that much of the challenge in autistic spectrum is at its root, about sensory processing.

My encounters with parents, in other words, have been generally positive. I think I can tell where they're coming from, their motivation to help their child, and wanting to hear from an adult who 'made it through' the child and adolescent and young adult phase. I think I present the "right mix" of hope and struggle, at least for parents of kids with the Aspergers label. Like, hey, my executive functioning is in the toilet, I have expressive/pragmatic language difficulties, experience overload, have an auditory processing disorder, and have rewarding relationships but am challenged by some aspects of that. I guess, though, I function in the world. More or less.

On the flipside, I also experienced a kind of "fishbowl" effect at the conference. Lunch tables had signs on them, which allowed people from different groups to connect -- families, professionals, adults with AS. I sat at one of the latter tables. At one point, a man and his sister came over to sit down, and she did not have AS. At first it seemed like not a problem but then she started asking questions of some of us. Maybe her brother doesn't live independently but she started asking one fellow questions and seemed very surprised that he lived on his own in an apartment. Then she started grilling another woman at the table. An acquaintance of mine took exception to this and said very assertively that she was uncomfortable with how this woman was acting at a table that is clearly labeled as being for adults on the spectrum, that her presence is being tolerated, but the way she's treating us isn't nice.

My non-confrontational-avoidant side kicked into full gear and I stayed silent. I saw my friend's point. It made me really uncomfortable. That, combined with people mulling around with their plate of food, figuring out where to sit and seeing the "Adults on the Spectrum" sign on our table and shooting looks at us that were discomforting. Actually my friend saw them more than I did, because I wasn't looking (in my usual obliviousness combined with already being overloaded).

In the buffet line, my friend and I were chatting about various things and some of the ladies in line (not spectrum) were giggling, I think because they found what we were saying funny. It was funny. This made me a bit proud; we tend to have a quirky, ironic sense of humour.

But the fishbowl feeling was very striking; it's like we as adults with ASD were specimens, or objects of inquiry. It was like the joke about people with ASDs disappearing when they reach 18. We were suddenly there, in the faces of the people who think about kids with ASDs all day long, and used to encountering ASDs in children with a child (accented with the influence of ASD) understanding of the world. Here are full-grown adults. It's like they have no framework for us.

So I can somewhat understand the staring. My tendency is to want to reach out and make those looks an inquiry, understand them as a hesitation to ask, but coming from a desire to learn, rather than a derision, skepticism, or scorn. I want to provide a framework for adults where none exists.

Maybe I haven't experienced the lash of parental invalidation enough, the kind where they say you don't act like my son/daughter, you make eye contact, you don't seem ASD enough therefore you can't speak about it. (see this video for a great account of emotions, "passing", and invalidation) At least I haven't experienced the last part of that. I have gotten "I wouldn't have guessed you have Aspergers".

My mental response to that is, well, okay, fair enough, because you don't see all the coiled up tension and anxiety and confusion and the way my friendships and marriages stumble, the way my mind works, the messiness of my house, the potential of my mind contrasted with where I've actually been able to get to.

So I haven't felt the need to use the "sledgehammer" with parents or other NT people* who don't live with ASD as a first-person experience. But I can understand why some of my peers have to wield the sledgehammer.

Which leads, I suppose, to another potential topic: Why I Have Hesitated to Protest

*I am aware that not all people who identify as parents or professionals first, are NT.


BeccaMama said...

I've just found your blog and am finding it interesting and challenging.

Thanks for writing.

Karen said...

Dear BeccaMama,

I'm glad you found it, and find it interesting, and I'm very glad you find it challenging. I like challenging :)

I welcome your comments any time.


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