Autism advocates, despite many great public outreach efforts, face significant public perception challenges which may threaten our ability to secure necessary services. Autism awareness campaigns have been successful in spreading the word about increased prevalence but have not yet provided our friends and neighbors with a clear picture of its devastating effects and recommended treatments. This lack of understanding coupled with a simmering sentiment that autism as a “special interest” disability less worthy of investment than other medical conditions should be a cause for concern and an impetus for action by advocates.
Ask your friends and neighbors what they know about autism and they will likely conjure up the image of a kid who flaps his hands, has frequent tantrums and shys away from most social situations. They may also know that autism services are very expensive, but they probably know little about the benefits of these services. They may wonder why their tax dollars and insurance premiums are being spent on these expensive services and they may become angry if they can’t get a clear answer.
This is not a hypothetical scenario. There has been recent opposition to insurance reform and local funding of education for autistic students because of the costs to those who are not directly affected. Particularly maddening, was this comment in response to a parent of a child with autism, following a recent Star Ledger editorial:
…So far as I can see, you’ve deluded yourself into believing you’re fighting for your child’s education – vary (sic) noble. What you’re really fighting for is the right to have other people pay for your child’s special education. I sympathize with your plight. I have several friends whose children have been diagnosed as autistic. But just because you’ve been dealt a bad hand, that doesn’t mean that everyone else at the table has to ante up to cover your loss.”
We may not have the time, energy or inclination to argue with this guy, but we are naive if we think that people like him won’t petition school boards to cut back on special education expenses if they fear a cutback in funding of class trips and football teams. So what should be done? How about a public effort to more clearly and completely define “autism” and a frank public discussion about the funding sources for services with an emphasis on cost control?
Autism is commonly defined as a disorder which is characterized by limited communication skills and social interaction as a well as a tendency to engage in non-functional, repetitive behaviors with little or no mention of the significant deficits in self-help skills. WebMd’s 120-word definition includes no mention of self-help skills. Autism Speaks’ website has a “What is Autism” page which doesn’t mention any effects at all, even difficulties in communication. The very extensive Wikipedia page on autism goes into great detail about the visible signs of autism and possible causes, but makes no mention of problems with self-help skills. (It does, however, have a picture of a kid lining up all of his toys).
I’ve become convinced that a reasonably intelligent person with no prior knowledge of autism could search the internet for 30 minutes without finding any information about many of the major challenges experienced by those with autism and their parents. My friends are usually surprised to hear how difficult it is to teach MJ to dress himself, feed himself, use the toilet, brush his teeth, take a bath and remain occupied without harming himself. Our neighbors are likely unaware that ABA therapy is effective in addressing these challenges and that its cost can be mitigated through parent training.
Autism can devastate a family and there is no cure or cheap remedy. There are, however, proven and practical methods for maximizing independence of people with the disorder and minimizing the costs and burden associated with caring for them over a lifetime. Autism advocacy groups and those of us with skin in the game must be more specific when communicating our challenges and the benefits of available solutions. There’s no need to be blindsided by any PR battle that we may face in the future.