Tuesday, July 13, 2010

How to make autism a "tiny disability"

As I look back on J's past year, one thing that stands out to me is how minimal and inadequate his official autism-related therapies were. Our regional autism center no longer provides any therapy at all, limiting its services to evaluations (and even for these there's quite a long waiting list). So all of J's official therapies have happened at school. Here, OT has been minimal, and speech therapy is conducted by an itinerant generalist untrained in autism-specific language deficits. I asked for more; nothing happened; I have yet to sign our 9-month-old IEP. I could have spent more time fighting; instead I spent the time I had working with J myself.

A few months ago it looked like a new opportunity had opened up: the new Kinney Center for Autism Education and Support at nearby St. Joseph's University was offering a social skills group for adolescents with autism. We called up, there was an opening, we faxed over evaluations and went through an accelerated intake. They couldn't wait to meet J. But then they did. "He doesn't comply with directions," the psychologist told me after he interviewed J with my husband, "and so he doesn't meet the requirements of our social group. We need kids who will follow directions." He promised to let us know if some other program opened up that might be appropriate for J.

So my ears pricked up the other morning when I heard the following words on WHYY's Morning Edition:

The long hot days of summer can pose challenges for families of special needs children. Parents have to find activities or camps where their child feels safe, welcome, and continues to learn. A new camp at Saint Joseph's University is trying a unique approach. It's especially designed to accommodate children with autism and pairs them with their typical peers.
Gee, they didn't tell us about this program, I thinks to myself, as I continue listening:
Executive director Michelle Rowe says having a mixed group of kids means opportunities for learning. "What that does it it allows the kids with autism to learn from their typically developing peers. In translation, that means that children with autism can benefit from learning what kinds of things are expected socially at different ages."


"The kids can be in the pool and also be interacting with each other – we take them for five hours a day, we expose them to a lot of fun, but also, they can't help but learn in the process."
Sounds great, I says to myself. A great opportunity, as well, for typical kids to learn about autism and about how to interact with autistic peers. But then I hear more:
As excited campers chatter about their favorite activities, it is nearly impossible to determine which children have Autism, and which don't:

[Sounds of kids' voices.] "I like it all!! We go swimming every day, we go to the play ground most of the days." "I like talking with my friends, I like swimming, and I like snack time." "Playing basketball!"

This is the first year for the camp, and the kids with autism are in the majority, but Rowe hopes to have more of a 50 – 50 mix in the future. She says the concept is also beneficial for typical kids, who learn to feel comfortable around people with disabilities. 7 year-old Ian sums it up:

Ian: "Kids with autism just have a tiny disability, not like a big difference, we're all the same in a couple of ways."
Nearly impossible to tell which ones have autism?? Only a tiny disability??  Tell that to a parent of an autistic child. Or take a look at J, so capable, yet so mischievous that he would never be admitted to this camp. Of course, that's precisely what's going on.

Indeed, besides the fact that the Kinney people didn't tell us about Camp Kinney at the time they evaluated J, there are an number of clues here suggesting that they handpicked the autistic campers to be minimally disabled--at least in ways that would inconvenience the staff and disturb their non-autistic peers. Consider, for example, how easy it was for one of the college undergraduate counselors to diffuse a child's temper tantrum:
St. Joseph's Psychology major Amber Leyton says learning about behaviors and explosive temper tantrums associated with Autism in a classroom is one thing – dealing with them first hand is another. But Leyton had no problems diffusing a situation when a young camper had a meltdown because he couldn't spend time with a counselor named Drew:

Leyton: "At first, it was just waiting for him to level out a little bit, and it was explaining to him, over and over the situation: if you calm down, you can eat your lunch, you can go see Drew, over and over again, the schedule, what was going to happen, and what was expected of him."
What this program seems to be striving for, as much in its admissions policies as in its hoped-for outcomes, are individuals like John Dorfman:
These kinds of situations [as in Drew's tantrum] are familiar to counselor John Dorfman from first-hand experience – he has autism. He says he wants to inspire the campers with his own story:

"Anything is possible! When I was in 9th grade, everyone was skeptical that I was even going to make it to college, and here I am, going into my senior year helping the other kids, it's really a great thing."
So long as potential providers resist providing intensive therapy and opportunities for peer interactions to the many, many individuals with more severe or challenging forms of autism, everyone but the families of such children can remain in happy denial, congratulating themselves on how openly they welcome autistic kids into their worlds and how open-mindedly they appreciate what a tiny disability autism really is.

I emerge from these thoughts in time to hear the program's closing remark:
Michelle Rowe says they had to turn away applicants this year, but hope to expand the program next summer.
Isn't it pretty to think so?


LEX said...

In the not-for-profit world of doing good, such practices are called "creaming."

Rachel Simon said...

Although my family member has an intellectual disability and not autism, as I read this blog, my cynicism meter went so far beyond its usual place of tepid disbelief that I think it broke. This is good, because I do think that, even for family members, it can be easy to get lured into thinking that the world is essentially good and that professionals are egalitarian with their generosity. Your blog reminded me of how readily I've bought into this nonsense - and how skillfully some people learn how to dodge the hard work while also capturing sparkling PR. I'm left awakened - and distressed. But also laughing. Your humorous approach to the withholding of services might not change the world, but it seems the best - and only - way to go on.

LexAequitas said...

The truly sad part is that they didn't really need to do this; they could have been much more open.

In the early 90's, I worked for a mixed camp for MR/DD kids. It always was weighted more heavily towards the MRDD population, and there was no mistaking they had disabilities. The ones I was counselor for specifically had IQ's in the 30-65 range. The point isn't thinking that people aren't different, or that they don't have disabilities -- it's to recognize they're people in spite of their disabilities, regardless of how severe. Hearing "they're just like us" from kids is a warning sign in my mind, I'd rather hear something like, "they're different, but okay once you get used to them".

It's almost worse than not introducing the typical kids to the autistics at all, because it reinforces the idea that larger differences are "bad".

Mrs. C said...

What, you think they don't have room for nonverbal kids like mine in these camps and social groups??

Oh, even the PUBLIC PRESCHOOL that is taxpayer-funded wants to run a daycare as well. Um, but children like mine are specifically excluded because they soak up too much staff time. Just burns me up.

Can we please just QUIT PRETENDING we accept people with disabilities? Because we don't.

I'm discouraged thinking that when my son is older, I won't be able to go out any more AT ALL because he can't go to the restroom with me... and I can't very well leave him outside the ladies' room and expect him to be ok.

VERY discouraged of late, encountering probs with regional center as well. Oh, and funding for any therapy at all related to autism through insurance? Forget it. :(

Nancy Bea Miller said...

I can't even tell you how many programs and studies my very autistic son was turned away from, only to later have enthusiastic people tell me about this great program for kids like my son, or how exciting it is that this new study (one that my son was turned down for) has found some exciting new news that will help people (like my son.) Oh the irony, and the injury to one's very soul.

FedUpMom said...

Sounds to me like part of the problem is that the "autism" label covers such a wide range of conditions.

As for cherry-picking the kids, that happens everywhere. It's like our suburban school district that loves to brag about their high test scores. Why are the scores high? Because this area of the suburbs has lots of well-educated parents, who move here "because the schools are so good!"

If I ran the world, nobody would be allowed to brag about their program unless they gave full disclosure about exactly who the subjects were and how they were picked, and who was excluded.