Looking For a Few Accommodations, No Matter What Your Age

by Kristina Chew

Published April 05, 2009 @ 12:31AM PT

On Thursday, 150 empty strollers were placed in Central Park to "drive home [the] impact of autism." A potent symbol, 150 empty strollers in a world-famous park where plenty of well-heeled parents walk (or jog, or run) with their children---and a symbol that, knowingly or not, sums up the state of understanding of autism and of individuals on the autism spectrum. Empty strollers suggest that (1) the children missing would be small enough to fit in those strollers and (2) children who're on the autism spectrum are, indeed, "missing" children and have been "taken away" or---reminiscent of the 2007 "Ransom Notes" ad campaign---"kidnapped" by autism.

The "Ransom Notes" campaign was roundly critiqued by self-advocates, parents of children on the spectrum, and many others. But it's the strollers in particular that are revealing---strollers are, of course, for use by young children. Autism is currently most often thought of as a disability in children, and much of the focus on treatment, programs, etc. is primarily on children. As writer Linda H. Davis---her son Randy is 22---wrote in a Washington Post editorial yesterday, "autistic adults are relegated to the sidelines." The number of children estimated to need "extensive adult services by 2023" totals 380,000, a figure which "roughly equal to the population of Minneapolis" according to Davis, who especially highlights the need for trained workers to support adults who require such services:

Randy is just one of hundreds of thousands of autistic adults to whom society pays frighteningly little attention. The price of their care will affect all Americans, not only those who have autistic children. Along with housing, day programs, transportation to those programs or jobs, and higher-than-average medical costs, adults with autism require steady supervision and support. Consider: A well-behaved, relatively high-functioning person such as my son could manage in an environment that has a ratio of three clients per staff member. But many autistic people require a one-to-one ratio. This is a serious hurdle, not least because of the high turnover rate among those who provide direct care, which stems in part from their low wages. Not everyone is temperamentally suited to this work. People with autism present myriad challenges: They can sometimes be violent, sometimes are self-abusive, suffer psychological meltdowns, or behave in many socially unacceptable ways, to say the least. Women, traditionally cast in the caregiver role, are at risk of greater physical harm when caring for autistic adults than for children. At expected rates, we will need to find an additional million caregivers, people who must have the right personal qualities to work with autistic individuals but who are willing and able to work for low wages. This is no small challenge. We not only must train people but also show that we value this work by paying them better.

It's too true: So much of how well my son does is based very much on the teachers and other individuals around him. His teacher this year has been beyond wonderful (though I think I might be driving her crazy lately with my queryings) and I don't know where we all would be without her. There aren't many like her, and Jim and I just hope that we are able to convey our gratefulness.

There's worry, though. She'll only be Charlie's teacher for a short while and hopefully next year. Not everyone is willing, and able, to work with Charlie now that's he older, tall as many of his aides and therapists, and athletic, and strong. Charlie's far from being an adult----he'll be 12 in the middle of May---but already a great deal has changed in how people respond to him.

This point was driven home to me on Saturday afternoon when Charlie and I went to swim at the YMCA.

The YMCA in our town is a very big operation and encompasses not only the main facility (where some previous difficulties with pool access have occurred), but a couple of satellite locations. One of the latter---our favorite pool to swim in---is actually located in the facilities of a large autism center; the YMCA (I think) rents the space. The pool is huge and heated and there are windows that let in light and offer a view of trees. Charlie always seems at ease in the big space and gets in some good swimming.

However. It's been made to clear to us by the front desk that, at the times we're swimming at the pool (and Jim is using the workout equipment upstairs), that It is the YMCA and not an autism school. Ok, ok----Jim and I still call this particular YMCA branch by its autism school name; you can't avoid seeing the yellow school buses and the signs when you drive in.

The only drawback to swimming at this "YMCA branch"  is that, while there are very nice locker rooms for men and for women, there is no "family" changing room. Boys over seven or so are not allowed in the women's locker rooms. This is not a problem when we're with Jim, but it is when it's Charlie and me. Charlie's just not ready to go into the men's locker room by himself and, when it's just him and me, we have to ask the front desk to open a side door for us. After swimming, we walk up three flights of stairs to change in a restroom (reasonable large, for individuals with disabilities). I've made a number of inquiries about me taking Charlie into the women's locker room and gotten a "no" every time. Much as I think Charlie is aware of everything, I do note to the front desk that he's not very inclined to look at other people, and I'd really prefer that he not have to walk around the building in a wet suit, with no possibility of a shower after he's swam on a cold day.

Saturday, with Jim out of town, it was Charlie and me. Maybe because I, in the final stages of recovering from a cold, coughed just as I parked the car, or maybe because we usually don't go to the YMCA on Saturday and because Jim was not with us: Charlie got really, briefly, upset and I wasn't sure if we'd be able to swim. We got ourselves into the building and----Charlie had yet to put on his swimsuit---I asked if we could just go quickly into the women's locker room, so Charlie could change, as it was one of those moments when the ordinary (walking up the three flights of stairs to change in the restroom) seemeddaunting and potentially disastrous, with an unhappy boy.

The answer was no, repeated a few times.

At some point in the following back-and-forth I noted that the building is an autism school and was told that right now, it was the YMCA. The upshot was that, with a female staff member, we were "allowed" to go into the women's locker room and Charlie quickly changed and we were soon in the pool where we behelf six lifeguards and one person swimming laps. (Meaning that, the locker room had been empty.)

As Charlie grinned and jumped into the pool, I reaccessed what I had said. Of course I've long known that Charlie, once older, would not be allowed in a women's locker room, Sure I wish that he could go into the men's locker room and change, but there's some significant safety issues to consider. I doubt the YMCA could change its policy about who's allowed in which dressing room, and yet I have to wonder if any accommodations might be possible. And, rather than denying that this particular YMCA branch is located in part of an autism school, why not use this as a way to consider new possibilities, new models and strategies for accommodations, new opportunities for thinking how to make the world accessible for individuals with disabilities of all sorts and needs?

Our YMCA does have some "special programs" for kids on the spectrum, including swimming lessons and a biweekly Saturday session of swimming and gymnastics in which kids on the spectrum are paired with teenage volunteers. Both of these programs are geared more for children younger than Charlie; he used to really enjoy the Saturday sessions, but things have changed now that he's older, and still has a lot of needs. It's not special programs that Charlie needs at the YMCA, but ways to integrate him into what most people use the YMCA for. And that does mean, making it possible for him to do the basics---showering and dressing---in ways that don't place extra demands on him, and single him out his difference. Indeed, as Charlie's grown older, places at the YMCA are potentially much more important, as they give him a place to learn leisure activities, socialize (in his way), and much more----the kinds of things he needs to learn to help him through life.

It was a long time ago Jim and I put away Charlie's stroller and actually not long after he learned to walk. Guess we knew even then that he'd have to get himself places on his own two feet---not that we've ever been so far away that we couldn't reach out and hold his hand.