If Not Now....When?

"If I am not for myself, who will be?
If I am only for myself, what am I?
And if not now, when?" --- Hillel the Elder

I am struck this week. I am puzzled by the questioning of a basic ideal. I am asking myself why some do not understand the inherent and deserved rights of others, without feeling they are sacrificing the support they need. I am struck by complacency -- perhaps it is because we have a society over-wrought with "problems," -- be it global warming to so much poverty in the world -- that people don't have the same "space" to give to disability issues. I am struck by how we create and manufacture our own problems and the problems of others.

There is simply no need for a polemic. People are deserving of their basic human right to be presumed competent -- and it is our obligation to find every possible way to enable self-expression of the individual. When it takes the form of a groan, a behaviour, we have an obligation to accept that as valid communication. Families who are having difficulty in supporting disabled offspring deserve the gold-standard of support, so that their lives and the lives of their children will be well-lived. And we do not fit into the "normal" paradigm. Forget that paradigm. It will just make the process painful.

Do you know how hard it is to get AAC training here in Canada?? Virtually no one will give it to you. Wait lists are two years and longer and autism may not even be considered a "developmental disability" in some cases in order to qualify. Even those involved in ABA will eventually agree, that IT and communication boards are vitally important. In many cases, a child will not be able to physically communicate with speech. Some days it will come, other days it will be impossible to come by. It is the nature of the disability. Why can't we agree that it is utterly important that we are trained to support our kids when they're young, with AAC (sign language, or other IT or augmentative systems)? Kids should be learning literacy skills, live daily in a text-rich environment. While language isn't all about speaking, it is about understanding, reciprocity, and learning how to express not just wants (that is easy for many autistic people who cannot speak fluently), but an expression of SELF.

Can we agree to a variety and/also of approaches to get our kids what they need????

But as long as we paint autism out as something we can get rid of, the scenario may never change -- as long as there's the POSSIBILITY that one child can be "cured" or "recovered," then too bad for the others -- they're the "victims." I think that's a lousy way to brand ABA or any autism "service" or charity -- some of which I outlined in my paper "The Mismeasure of Autism: The Basis for Current Autism "Advocacy." We know autism is a life-long disability and we need to support our kids now. Too often, many kids wait fifteen or more years until parents realize that this enablement with communication tools, is so vitally important, if not an entitlement of all disabled individuals.

Looking through Different Roads to Learning catalogue today, I see lots of neat things to help autistic kids learn. Lots of new devices, but still old books on old ABA methods, Lovaas, and not enough books from autistic people who can help the parent and clinician understand and teach the autistic child. The ABA community is looking into methods outside of its original framework, which is a tacit acceptance that there are many tools that can help the autistic child and adult -- and that is a good start.

I hope this community will, however, discontinue its solely negative referencing of autism as something horrible. It is challenging for all of us, no matter what the resources available, and indeed, if there are fewer resources, all the more challenging. At the same time, I know that Adam gives me so much joy and I feel he deserves so much more than what Canada offers to autistics today. He deserves to be viewed as a valuable person. He deserves access to programs and schools. He deserves to have a shadow who understands and empathizes with his way of learning and seeing the world. He needs early access to literacy programs and AAC and IT. He deserves early programs (we call them intervention, but I'm not keen on that word for various reasons and implications), that engage young infants in play, not table-teaching and aggressive "look-at-me" programs, that clearly do not understand autism as a disability. Even autistic infants deserve that play, even if it's more deliberate. At the same time, autistic kids should be allowed their down-time, not bombarded with interventions that deliver the message (you're no good the way you are, you're doing that wrong so let's engage you 24/7).

Balance, dear friends. Family should fee a little more freed to spend time to just "be together," than constantly engaged to "fight" autism. If I have to retrace our steps when Adam really began to learn(it was not like he wasn't learning before but it's just that the autism diagnosis made us THINK he wasn't really learning or that what he was learning on his own like the alphabet, colours, numbers and words, was not really learning per se, but 'rote learning,' or what Dr. Laurent Mottron has coined this perception as 'dead-end intelligence'), it was when we let go a bit.

It took us time to feel confident enough to let go of stricter ABA therapists and supervisors and VB programs. I liked some ABA therapists more than others -- particularly those who were reaching for something greater, who, while they were still ABA therapists, saw that there was still more to understand out there. I could also feel who really valued Adam for Adam, while others smiled a lot and "really wanted to work with autistic kids." As nice as that sounded, alarm-bells went off. Like, why just the autistic child? Why not ANY child? Was Adam their...pity project??

While my innards were telling me that Adam was happier, learning and had much more social interaction with us when we played with him and swung him in the blanket, we were still teaching him by following the ABLLS. I acknowledge that everyone has to come to terms with their child and be confident with their own choices and themselves over time. There is no other way I can suggest it. When I get calls from parents who have newly diagnosed children, I tell them how I think Adam is terrific, but they will have to find their own way through all the information and tugs out there. I remember when someone said to me when Adam was diagnosed that I would have to accept him, I didn't understand. I thought that was a cop-out and I had to do more work with him. Four years later, I clearly understand what people were saying to me.

We have so much choice. We have play, we have more AND/ALSO options that Canadians must advocate for. As I push for Adam's entitlements, I keep thinking of all the other families I know on waiting lists, struggling in over-crowded public schools. We must keep asking and we must do it NOW.May we do it by keeping the dignity and value of our children, and the autistic people who came before them, in mind.