Wednesday, April 1, 2015

Parenting Pointers: Raising a Child with Autism

"I'm a Mom, what's your superpower?" truly sums up Stephanie Allen Crist and the role she plays in the lives of her three children, who all have diagnoses of autism spectrum disorder (ASD).

Crist's new release Discovering Autism / Discovering Neurodiversity is more than her memoir - it's a reaffirmation of the importance of parents as advocates for their children with autism.  It celebrates personal empowerment and broadens the general autism awareness campaign we see in today's media. This book champions the awareness and acceptance of individuals with autism.
According to Stephanie, the biggest challenge they faced was harassment from Child Protective Services (CPS).  She explains that, "We discovered the psychologist in-charge of our children's therapy had been behind the harassment from CPS.  Her justification was that 'no family should be burdened with three children with autism.' It became a major battle, which I win at a cost."
Centers for Disease Control and Prevention (CDC) estimates that about 1 in
68 children are diagnosed with ASD.  This condition is a development disability that can cause social, communication and behavioral challenges.
According to a study in the journal Nature Medicine, "most siblings with a diagnosis of autism do not share the same genetic risk factors for the disorder and are as distinct in their behaviors as any brothers and sisters." (NY Times, Jan. 26, 2015)
Individuals with ASD can range from low-functioning to high-functioning.
It's thought that some of the most brilliant minds, including Albert Einstein, Amadeus Mozart, Bill Gates, and Bob Dylan were on the spectrum.
I had a chance to interview Stephanie to learn more.

What was the inspiration behind writing this book?

By the time Alex was first diagnosed, people were already starting to talk about the memoir I would write. I wasn't really inspired to write this book until I realized we were being subjected to an even greater amount of oppression and persecution than my husband and I were expecting. Once I realized that someone we had invited into our home was trying to take away our "burden" of having three children with autism, I knew I had a story that I had to tell, because I knew it was a story that others needed to hear.

What was the most surprising thing you've learned about raising family on the autism spectrum?

The most surprising thing I've learned about raising a family on the autism spectrum is that quality of life isn't about ability any more than it is about how much stuff you have. Quality of life is the balance between the love you have in your life and the opportunity to pursue your dreams, no matter how challenging that dream may be. Now this lesson influences all my work.

How can parents be an advocate for children with autism?

There are two kinds of advocates who do that work. First, the parents of children with autism need to advocate for their children. Raising a child with special needs--any child with needs that differ from his or her peers--requires advocacy. You have to advocate to get the education and medical services your child needs. You have to advocate for the recreational and enrichment activities your child needs. Most importantly, you have to proactively protect your child's potential, otherwise your child will likely learn dependence and limitations instead of skills and empowerment.

This kind of advocacy is about speaking up when it's easier to be silent. It's about never taking "no" for an answer when you don't agree with their reasons. It's about fighting for services and protecting your child's rights. It's about always remembering why you are doing what you are doing and never sacrificing your child's well-being for your own interests. It's about being a good parent, except more so.

Once parents have learned how to advocate for their children, some of us look toward the population as a whole. It's easier, in a way, to improve the quality of life for your own child. It's harder to translate that improvement to other children with special needs. The sad reality is that some parents aren't advocates for their children. Some parents even endanger their children. So, those of us who can do so need to stand up for all children with autism. In fact, I try to stand up for all children, regardless of the specific nature of their special needs. It's not enough to make life better for my family. I feel called to make society better for all people with neurological differences. This is a whole new level of advocacy!

No comments:

Post a Comment