29 Marbles

Parents of the Autistic Weigh Lifelong Care Options on this morning’s Morning Edition on NPR discusses many of the things that I’ve discussed here before: the need for estate planning and trusts, thoughts on how your adult child will live, potential interactions with law enforcement.

What struck me the most about the story, though, was how autism was portrayed and - more importantly - how the parents in the story have responded to life with autism. The quote I used for the title of this post - “It’s an odd life, but a good one” - pretty much sums it up.

Finally, a story about autism in the national media that doesn’t focus on the doom-and-gloom, woe-is-me (I?), “my child is gone” view of autism that is so prevalent in the media today. Could this be the start of a new trend?

Let’s hope so.

Autism 101, a panel discussion about autism, will be at 7 p.m. April 18 at the Logos School, 9137 Old Bonhomme Road, Olivette. [Flyer (MS Word)]

The panel will explore topics such as relationship development intervention, applied behavioral analysis, neurology and sensory and feeding issues associated with autism.

Among speakers will be Dr. Garrett Burris of Child Neurology Associates, Colin Peeler of Behavior Solutions, Sheree Behrndt of Sensory Solutions and Sue Lindhorst of Speech Language Services.

Autism Speaks and Missouri Families for Effective Autism Treatment will sponsor the event.

Those who want to attend must register by Wednesday. To register, click on Upcoming Events on the website, www.autismwalk.org/stlouis. For more information, call 314-989-1003.

In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an “autism awareness elevator pitch.” Imagine you find yourself on the elevator with Oprah’s producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here’s the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So…, what’s your pitch?