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Autism and the Pew Lady

By Dan Coulter

I'm writing on behalf of the mother of a five-year old girl with autism and her mother - and for me and my son.  If you're not familiar with autism and you've ever wondered what you might do to help, here's a heads up. 

I ran into the mother I mentioned at the Autism Society of North Carolina annual conference in Raleigh. She described how her autistic daughter had become upset in church and caused a small disturbance. 

Let me note here that autism actually includes a range of conditions that fall under something called Autism Spectrum Disorder or ASD.  People with ASD have a wide variety of challenges and abilities.  Many forms of ASD are invisible, and you often can't tell by looking at a person that he or she has ASD.

Back to church.  Some people with ASD can be upset by changes in routine.  The little girl was upset because her Sunday school was cancelled for a special program in the sanctuary.  She cried to the point her mother had to take her outside, leaving her two sisters behind.  In the pew to the rear of the sisters, a woman's voice loudly proclaimed, "She's too old to be acting like a baby."  This really upset the oldest sister and she had to be calmed down after the service by her mother, who told her that the woman didn't understand and not to let such people upset her.

Seeing the fire in the mother's eyes as she told the story, I think the other woman was lucky she held her comment as long as she did.

What's one big thing can you do to help people with autism?  Don't be the pew lady. 

People with ASD often have problems with speech, or have trouble understanding explanations or difficulty expressing themselves.   They may be hypersensitive to light or noise or touch or heat or cold.  They may have obsessive interests and want to talk about them constantly.  They may have unusual mannerisms such as hand-flapping or become upset at some slight change in their routine.  They may lack tact and say things that are true, but socially inappropriate.

So, when you see a parent with a child who's acting volatile or eccentric, don't be too quick to chalk it up to poor parenting.  You may be watching someone struggling to make the best of a very difficult situation.  You'd never knowingly criticize a person in a wheelchair struggling to get up a ramp.  Having a disability that isn't obvious doesn't make it any less real. 

You don't want to be the pew lady.  You want to be the person who understands the symptoms of ASD -- and that ASD is a neurological disorder that causes the brain to function differently -- and that people with ASD are not trying to be difficult -- they're often trying to overcome a difficulty.

And many succeed to amazing degrees.  My son has Asperger Syndrome, an ASD condition that blew his mom and I away when he was first diagnosed because he was such an obviously smart little kid.  Among other things, Asperger Syndrome gave him an obsessive interest in Star Wars and robbed him of the ability to instinctively understand what he needed to do to fit in with other kids.  It also made it hard for teachers to shut him off in class. He'd learn the lesson, and more, and want to tell the class everything he knew on the subject.  (Kids with AS are sometimes called, "little professors.")  Wherever we went -- the mall, our friend's houses, a museum - our son was fascinated by objects and would obsessively pick up anything that drew his interest to examine it.  He also had an intuitive understanding of mechanical systems - but that's another story.

We had questions: Would he ever "get better?" Could he control his obsessive interests? Would he ever be able to go to a mall alone, drive a car, have a girlfriend, live by himself, go to college, hold a job? 

I'm happy to report, "yes" to all of the above.  My son is now in college, living 3 hours away from his parents, a veteran of two part-time jobs and working toward a career in forensic science. 

But whether people with ASD can go to college -- or it's a triumph to recognize their families' faces or dress themselves -- you want to be the person who helped make the triumphs possible.  Even if that's by avoiding making assumptions or remarks when you see a child not "act his age" in public. 

You want to teach your children not to tease or bully others, because teasing is torture to a child with ASD who doesn't have the ability to verbally fight back.  You want to be willing to hire people with disabilities, because many make excellent, loyal employees at all skill levels.  People with ASD often have strong skills in areas such as math, drawing, music or memorizing data -- and some have truly exceptional abilities.

You want to be the person who understands that one in 300 children born today has ASD and it's likely to affect the family of someone you know. 

You're not the pew lady. 

You're the person who's going to help make sure everyone with ASD is treated as you want to be treated: as a person who's not judged solely by a glance at his book's cover.  

ABOUT THE AUTHOR: Dan Coulter and his wife, Julie, produce videos for people with Asperger Syndrome and other Autism Spectrum Disorders.  You can find additional articles and information on their website at: www.coultervideo.com.