A “Crusade Against Autism”—-To What End?

Do we really need a “crusade against autism”?  Autism Speaks co-founder Bob Wright, grandfather of an autistic child, spoke of just such a “crusade” in the inaugural Annual TreeHouse Lecture. Dr. Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good in the October 29th Spiked. Here’s his conclusion:

Many families affected by autism welcome the higher public profile of autism, as reflected in the US election campaign. If this leads to greater resources to enable children with autism to get appropriate schooling and for affected families to get the support that they need, then that will be progress. If, however, resources are diverted into the pursuit of phantom environmental causes – such as vaccines – or the promotion of quack treatments or fad therapies, this is likely to have damaging consequences for all concerned. What we need is not a crusade but to move beyond discourses of blame based on irrational views about autism.

“To move beyond discourses of blame based on irrational views about autism”—-I can’t agree more. I’ll go a step further and suggest that we need to move beyond discourses of blame, period. Of parents and mothers in particular being blame for causing their children to become autistic due to being emotionally withdrawn, “refrigerator parents. Of endless efforts to pin this or that “environmental agent” as The Cause of Autism.” Of blaming vaccines or something in vaccines and then blaming doctors, scientists, and science itself.

I think—my husband Jim and I think—-that our son Charlie is autistic because he’s our son. We love him beyond what words can say and consider ourselves lucky to spend every day with him. I’m with Virginia Bovell, whose 15 year old son Danny is autistic and who says in an interview with the Daily Mail:

There are many things I find uncomfortable about the notion of ‘curing’ autism.

To cure my amazing son Danny would be to suggest that there is something dreadfully wrong with him, perhaps even something we, as parents, couldn’t live with – but nothing could be further from the truth.

If someone took away Danny’s autism, it would also take away so much of who he is. And I am certain that many parents of autistic children would agree, because how can I ever tire of watching my son’s face light up with joy as he kicks leaves in the park on his way to school?

To me, the notion of “curing autism” misses the point about what autism is (a lifelong disability). It’s not a helpful notion in my daily efforts to help my son: If one keeps thinking that there’s some “magic pill” for autism out there, and that one just has to find that elixir to make it all right, one’s determination and devotion are unquestionable. And because of that determination and devotion—-because, if you will, of love—it’s natural to want that magic pill. But autism and Charlie, and Charlie and autism: These are intertwined entities. Again quoting Bovell:

My son doesn’t have a ‘disease’. He is unique, special and happy. So why do I need to cure him?

Like “vaccines,” “cure” is one of those topics that come up in relation to autism, but that shift the focus too much away from helping autistic children and adults here, today, and now. Crusading against autism has a grandiloquent sound, but what I’m in search of is so much mundane reality. A job, a place to call home, other needs—of food, clothing, drink—all met at least adequately and, preferably, very well—these are real things that real individuals will need. Rather than mourning that a child did not get started in Early Intervention “early enough” (a point that Wright raises regarding his grandson in his TreeHouse Lecture), what about starting wherever a child is at and building an individualized education and individualized services—building a good life—around them?

It can be a huge and absorbing task to figure out how to do this. While it can seem scary to think about the future, for myself, the fear is more manageable when I look into things and deal with what’s in front of me—-this would be many more days of us walking the long road with Charlie, every step of the way.