Tuesday, May 09, 2006


Once a year, my children and I spend a week immersed in autism-centric culture.


I love that name. Autism/Retreat. Not a retreat *from* autism, but a retreat *to* autism. A time in which I don't have to guess if the person sitting near me at lunch wants to have a conversation. I can look at that person's interaction badge--if the green tag is showing--a potential for conversation. If the red tag is showing, I won't intrude on that person's need for private space. Concrete. Simple.

Participants are asked not to wear perfumes or use scented personal care products. I don't have to wrestle with my gag reflex for strong smells.

No one will give me pointed looks when I fidget in a meeting or play with a squishy ball. No one will assume I'm bored or being disrespectful to the speaker if I don't stare at the podium.

If I get up and leave abruptly from a gathering, no one will take it personally. It will be understood that for whatever reason, I am overwhelmed and need increased personal space.

I was scared before I went to autreat for the first time. My boys were (I think) in K and 3rd grade; I was still coming to terms with 'coming out' (to borrow a phrase from another minority movement) as an aspie. I didn't ask my husband to come with us and it was one of the first times I attempted to travel on my own with my 2 children.

This may not seem like a big deal to many of you reading this. A grown woman, a professional, competent woman, taking a trip with 2 school aged kids to a campground where there would be children's activities and structure. But for me, it was huge.

I have a problem with direction-sense and driving on my own to upstate NY from the Boston area, where I had never been before seemed daunting. Planning to spend a week with strangers seemed frightening. That those strangers were individuals on the spectrum, including people who were autistic, seemed overwhelming.

I had created a little world for myself where when I stepped out of my house, I inhabited a persona who protected me from the vagaries of "NT" life. That persona was competent, resourceful, successful. But I paid a price in stress and anxiety for using her. Once safely home, I could indulge my sensory needs, my need for predictability and wind-down time. Me and my boys could be ourselves. Home was (and is) sanctuary.

But I needed to learn to be my aspie self beyond the door to my house. So attending autreat that first time was an act of bravery and of faith. A gamble. Would I belong? Would "they" (whoever they were) accept me? Was I 'aspie' enough? Or would I forever feel between two worlds, never fully inhabiting either? How would the kids deal with a non-verbal autistic adult? Would they be frightened? Could I trust them to honor an individual's personal space or interaction preference?

I was just a whole bundle of insecurities.

And in the end, the most difficult part of Autreat was coming home. As my friend Phil calls it, 're-entry'. Having to put on that "NT" persona felt like I was encasing myself in medieval armor--for weeks I was heavy, cumbersome; the memory of lightness almost impossible to hold onto.

In a little over a month, I will be able to shed that armor again for a week where I will be myself.

To use another metaphor, 51 weeks a year, I must immerse myself in a foreign country and speak a language other than my mother tongue. At Autreat, I no longer have to translate my language into another. My passport is always valid.


Mike Stanton said...

Autscape which was inspired by Autreat and is held in the Uk is now accepting bookings for 2006

Kristina Chew said...

We hope to attend for at least one day!

ballastexistenz said...

I wish I had that experience there. (I believe a lot of people do, and it's wonderful for them. But I don't. It's still foreign territory, to me, and I run into almost as many communication pitfalls there as in the rest of the world.)

Fortunately I have similar experiences elsewhere.

LJCohen said...

Mike--a little far for me to drive and that pesky ocean is in the way. :) (just kidding). Thank you for posting the link for any European readers.

Kris--it would be great to see you again! Maybe Charlie could hang out with my boys for a bit.

Ballastexistenz--I wonder if we ever overlapped at Autreat? I'm sorry that you didn't have a positive experience there, but am glad you have found that sense of 'homecoming' elsewhere.


ballastexistenz said...

I went to Autreat in 1999 and 2004 (presented in 2004, did not make it to any but one presentation in 1999 and did not meet a lot of people that year, met far more people in 2004).

I've never had that kind of "belonging" in an entire group of people. I believe it would be possible in a group, but I've just never happened on a group like that. I have, however, found it with various individuals. (Including some individuals that I know from Autreat.) Come to think of it, none of those individuals have felt that sense of belonging at Autreat either, so I suspect whatever we have in common is something that is not part of Autreat's particular culture.

I do still wish I could make it to Autreat though. Not "coming home" when I go there, doesn't mean not liking meeting the people there, it just means it's as much or more work as meeting people anywhere else is.

Phil Schwarz said...

The first year my son Jeremy and I went to Autreat, we had to leave a day early. Driving away from Autreat's humble venue in those days (a 4-H camp in the Finger Lakes of upstate New York), I felt a pang of sadness.

It was something I remembered having felt before. The place and time I had felt it was on the way back to the US, from my visit to Israel, as the plane took off from Lod Airport.

I was leaving an environment in which a major part of who I am was normative, rather than in the minority.

Israel was eye-opening and mind-opening, but it wasn't a magical bed of roses in which I instantly felt at home. I am semi-fluent in Hebrew but it would have taken me weeks of immersion to get to the point where I could understand Hebrew spoken at normal speeds -- a newscast, say -- or read a newspaper without needing a dictionary. Jews (and Muslims and Christians and Baha'is) from many different parts of the world contribute strands to the fabric of Israeli society, and there was much that was unfamiliar, even for an avid amateur student of Jewish history and culture like me.

But even so, leaving Israel meant leaving someplace where my own expression of Jewish identity was part of what the surrounding society considered normative, in a way that simply doesn't happen in the diaspora.

And so it was with Autreat. That first year, I really wondered at first what we were doing there. It took trial and error over that Autreat and ensuing Autreats, to learn how to listen to and communicate with the variety of people -- autistic and non-autistic -- who came to Autreat. No instant fluency, no magic instant feeling of at-home-ness. And plenty of faux pas.

Yet... it did feel like I could stop trying to meet the behavioral and communicative expectations of the non-autistic majority there. The way I am, in my region of the autism spectrum, and the way Jeremy is in his -- different -- region of the spectrum, were both within the embrace of what the folks gathered for Autreat accepted as part of their own. Normative, in the tiny little temporary microcosm that Autreat calls into existence for a few days a year.

As is the case with Israel, there are some significant inequalities in how welcome people in different specific subsets of the spectrum wind up actually feeling when they get there. It's far from perfect, and it will take time to identify and mitigate the sources of those inequalities -- some of which I am sure contributed to the *lack* of feeling able to let one's guard down, that Ballastexistenz (and others!) have experienced.

But we have to start somewhere, and Autreat has done just that. Now we have to keep expanding its embrace, removing obstacles encountered by people in significant parts of the spectrum, as best we can over time.

I'm doing what little I can to move ANI in that direction.

And in the meantime I am grateful for the extent to which Autreat lets me and Jeremy come in from the cold of diaspora for a few days each year.

-- Phil

Kristina Chew said...

Hi Lisa. I just wanted to thank you so much for your kind wishes about our Big Move. It it not far from where we are now, but the difference, as measured otherwise, is cosmic.

Hope to see you, and Phil, very soon.