Autism NJ Listening Tour

I spent a good part of Sunday at a workshop with many members and staff of Autism NJ, which is New Jersey's largest autism organization. Autism NJ is launching a Listening Tour, with the goal of creating a Blueprint for Lifetime Support Services for individuals with autism spectrum disorders and their families. Responses will be sought from individuals, families, and "those connected to the autism community (service providers, professionals, educators, advocates etc.)." At the Sunday session, we were given a draft of the interview questions and paired with another workshop participant to do  "test" the questions; after lunch, we got into groups and critiqued the questions.

The questions were all centered on services, on access to them, and on what we felt would be necessary to maintain what we considered "high quality" services for individuals on the spectrum throughout their lifespan. (There was some discussion about what exactly "high quality" services means, with some people noting that, for many individuals and families, just getting services is the first, overriding challenge---"access" is the main issue, and "timely access" at that.) Further, there was a quiet, constant theme of emphasizing the positive in all of the questions: We were asked to note when we'd had access to the "highest quality of services and supports" possible. This strategy helped to keep the discussion focused on what works and what we wished could be in place to keep things working; it forestalled the discussion from devolving into complaints and if only we had this's.

One question was specifically about crisis situations and how these were handled, in our experience. We were asked to rate what we thought about the current level of response to crisis situations we were receiving. This question particularly hit home with me, due to my son's past couple of months, when Jim and I felt we were stumbling and at a loss as much as we were some ten years ago when Charlie's daycare teachers started to mumble about "something neurological." Then, though, we were stumbling and fumbling and had no idea of what to do, of where to turn: Now, we knew immediately who to contact and what to look into. I noted that, at the moment, the response to Charlie's having a crisis situation is pretty much a 10 (on a scale of 0 to 10, with 10 "the most appropriate and timely")---if, when, Charlie has a really tough day at school, his teacher calls me even before he gets home and we start to evaluate and strategize. (Whereas, in a former school district, it took about two weeks after Charlie had had a really bad day for us to hear what an "outside external" consultant had to suggest.) (Yes, not good.)

I was able to talk to a number of professionals---therapists and teachers (some of whom noted they are parents of a child on the spectrum, too). This was extremely instructive to me. I certainly talk with, email, etc. Charlie's teacher a lot, but the conversation is, of course, all about Charlie and his learning and needs. But what does it take to create, run, and maintain educational and other programs for children and individuals on the spectrum? What kinds of qualifications and credentials and supports are needed? How can I as a parent best support the people who help Charlie to learn and grow and be a part of the community----not invisible, in an institutional setting, about out and about----living and working in the community?

(Regarding the latter---here's a story of a New Jersey father who opened a bookstore, Words; his 13-year-old son is on the spectrum and the bookstore is designed with special needs kids in mind.) (It's also the only bookstore in the town it's located in---go, independent bookstores!) (Back to the point.......)

The interview questions are being revised (even as you read this post). I'm planning on interviewing parents (guess who's going to be #1), self-advocates, some teachers and/or therapists, the special education director in our school district, some medical professionals (Charlie's dentist, perhaps? the supervisors of the grocery stores he and I visit to much.....).

I've told a great deal of our story here, and here. I know I need to keep listening more---I certainly would like the blueprint that might result to be as well-informed, as well-designed, as reflective of the needs and hopes and wishes of as many as possible.

Image from Treadway Gallery.