autism and exile by lisa jo rudy

I often come by some really great stories written by parents of autism.  Sometimes they really resonate with me.  This one just hit it right on the mark - right on the mark.  Thank you Lisa Jo for writing something that describes so clearly how I have felt my experience has been as a mom of a child with autism.  I wish I could write as eloquently.

Autism and exile
Lisa Jo Rudy

Autism & Parenting Examiner
April 12, 2009
http://www.examiner.com/examiner/x-2007-Autism–Parenting-Examiner~y2009m4d12-Autism-and-exile

In many faith communities, exile - sometimes called excommunication or shunning - is the worst possible punishment. In the story of Adam and Eve, exile from the Garden of Eden is the punishment for original sin.

In our more secular world, particularly for middle class Americans, community gathers less around faith than around activities. For families, those activities include family gatherings - holiday events, barbeques, family vacations, visits to Grandma’s. For mothers, those activities often include play groups, playground visits, PTAs and round-trips to afterschool activities. For fathers, those activities generally include sports or community activities. Dads coach their kids’ teams, help out with Boy Scouting, or help build the backyard fort.

Parent with kids on the autism spectrum, however, are often exiled from the ordinary pursuits that make up our secular, middle class, American community. Big family events overwhelm little ones on the autism spectrum - and autistic meltdowns confuse and upset relatives, sometimes even sparking criticism and anger. Children with autism have a tough time with playdates, and often create friction between moms. And it’s tough for dads to bond with their peers if their child with autism is the one kid who wanders off instead of kicking or catching the ball.

As if that weren’t bad enough, parents of children with autism have no pre-existing community with similar issues to turn to - nor do their children’s issues elicit the compassion or support of the general public. Unlike parents of children who are blind, deaf, or living with issues such as Down syndrome, there’s no physical manifestation of a disorder. Nor is there any historic understanding of what it means to have an “autism spectrum disorder.” There are no pre-existing supports - such as braille or books on tape for the blind - to help out kids with autism. There are no colleges - such as Gallaudet for the deaf - set up especially for children with autism.

To make matters even worse, children with autism are nothing like one another. That means that even newly-minted parent support groups are likely to be made up largely of people whose concerns are completely disparate. While one parent is worried about her child making friends, another is anxious because his child has yet to speak a single word. These differences can actually set off disagreements among support group members, who want to attend to their own needs or pursue their own projects.

If exile is among the worst punishments possible, parents of children with autism are living with that punishment - and all through no fault of their own. Perhaps that’s one reason why parents group together with such intensity and passion around issues like vaccines, therapies, potential cures and “neurodiversity.” Perhaps, by creating community around autism-related causes, and investing those causes with enormous significance, parents of children with autism are finding what they need: a home, and a reprieve from exile.

Lisa Jo Rudy is a graduate of Harvard Divinity School, the parent of a child with autism, and the About.com Guide to Autism.

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