“Autism is a disease for the rich.” It’s a line from Kerima Cevik’s post on The Thinking Person’s Guide to Autism, and I can’t say it isn’t true. I’ve seen it up close and personal, with my son and some of his classmates. Our son, who scored zero on his receptive language evaluation at age 3, responded wonderfully to what Cevik calls “designer” interventions like ABA, visual teaching strategies, speech, OT, and sensory integration therapy. Within two years we had a more communicative and calmer child. It is an investment that paid off tremendously.
By contrast, I saw parents with fewer resources trying to do the same thing with both arms tied behind their backs. My son’s preschool drew from an economically and ethnically diverse population. Parents without a car can’t drive to all sorts of designer therapies. Single parents who work two jobs don’t have time to attend workshops and trainings. Parents who need a translator to interact with the teacher don’t stand a chance in meetings full of educational jargon, medical lingo and legalese. Those parents loved their children every bit as much as I loved mine, but the interventions that helped my child were not available, not affordable, and not feasible for their children.
But what do we do about it? There’s not really an easy fix. Saying that insurance should cover treatment isn’t going to make it happen. I know, I’ve been saying it for years. And political activism feels a lot like calling my insurance company. Both processes take determination and endurance, and in the end, there’s still so often a loophole. The politicians’, insurers’, doctors’ and parents’ incentives often aren’t aligned, and then there’s no win-win, only slog-slog.
I sort of hope if people were reading this blog, we might be able to come up with some ideas. Things that might get results in our lifetime that don’t involve being on interminable hold, organizing a march with placards or writing watertight legislation. I have a few ideas, and I’m going to throw them out there. Pick them up and run with them or submit your own. It could be a grassroots revolution.
One thing my husband and I thought of was to start a lending library of materials for teachers, therapists and parents to use for ABA, speech, OT, school or home instruction. My husband suggested that keeping the materials in a local library, which already had space, staff and check-out procedures, would be the best way to get things in the public’s hands. Fortunately, the head of youth services at La Grange library agreed, and the special needs collection was born. Part of what is unique about this collection is that it is not just reference materials for parents & professionals, but teaching materials, too. It includes flashcards and fine motor tools, picture books and DVDs, an alert program board game and Super Duper “fun decks.” The collection is receiving a good response to date, and per the circulation reports is getting used regularly. We would love to see the collection grow and for other libraries to embrace the idea of meeting the needs of such an underserved population.
Equal access to materials is of course only one piece of the puzzle – building library collections does not solve the question of funding specialists’ time. Many therapies, like ABA, Floortime, PT, OT, massage therapy, music therapy, and sensory integration therapy, to name a few, require trained practitioners to implement or oversee the programs. Special diets and supplements require oversight by doctors often not covered by insurance. These hours of care will only start being covered by insurance if they have demonstrable results. And from demonstrable results, you get to standard of care.
If you aren’t a scientist, you can still support this effort. To support research into results and help define a standard of care, families can join Interactive Autism Network (“IAN”). By creating an entry in their database & participating in studies, you help them probe efficacy of treatment and prevalence of issues. You decide when and how much to participate. IAN and Autism Speaks coordinate efforts of researchers, give grants and host symposiums. They even alert the media and work to turn this research into policy. So something as simple as filling out a questionnaire and sharing our stories and our data can bring us another step closer to help being accessible for all.
Please consider donating materials to your local library, sign up for IAN, or better yet, toss out another idea. Consider it an act of July 4th populist patriotism. Our kids deserve better. All of them.