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Why I Walk and Support Autism Speaks 

Monday, June 27, 2011 View Comments

My name is Jennifer Wachtel Kates.  I am a mom, professor, writer, and the 2011 chair for Walk Now for Autism Speaks.  I am writing to share my experience with you to let you know why I support Autism Speaks.

Harper Kates at age 9 in a wedding last summer.

 

My oldest son, Harper, was diagnosed with Autism Spectrum Disorder a little over eight years ago.  My husband and I were frankly relieved to learn that there was a reason for our son's difficult behaviors.  He never took naps, screamed almost round the clock, and at age two still wasn't using language functionally. 

Although we had no idea what we were doing and very little guidance, we dove right into early intervention programs and began therapy 20, 30, and 40 hours a week. 

When Harper turned three and left early intervention for the school system, those services were no longer paid for, so we began running up debt and borrowing from our parents to pay for the therapy he needed.  

In the meantime, our second son was born.  Because boys are four times more likely than girls to have autism, and siblings are 50% more likely to have autism, we got to live in a state of constant anxiety while watching our second son develop.  Though I had just graduated with my Ph.D. while pregnant with Harper, I had to give up my career in academia to handle my increasingly difficult role as mom. 

Our family took another financial hit as I scaled back to part-time teaching. Fast-forward eight years.  Because we got an early diagnosis and good early intervention, Harper made good progress.  He now attends a magnet school for intellectually gifted students. 

He plays baseball and basketball, loves video games, and is particularly gifted in math.  But autism is still with us.  I still live in fear that Harper will run into traffic or be abducted because he has no natural fears, very poor judgment, and is easily manipulated. 

He has been victimized at school because he lacks the ability to understand sarcasm and teasing.  He sometimes loses control and lashes out violently...at me, at his teachers, at classmates.  He has never been invited to a friend's house to play, has never had a phone call, and has begun to be aware of the fact that his autism inhibits him.  Last year, after one bullying incident, he asked me for the first time, "Mom, when will I not have autism?"  I didn't have a good answer for that. The thing is, we are lucky.  So many families do not have the advantages we did:  early diagnosis, early intervention, good response to therapy, a supportive family.  That's why most families don't stay together when there is an autism diagnosis:  the rate of divorce is 90%.  Families in the autism community face staggering debt because treatments for autism are largely not covered by insurance.  Our debt was just $40,000 before we began paying it down, but many families spend tens and hundreds of thousands of dollars a year out-of-pocket.  Rates of depression among parents and siblings are very high, and one study found that stress hormone levels in parents of kids with autism were equal to those in combat veterans. 

School systems don't know what to do with our kids, and the sad truth is that, because of poor awareness or not enough money, many kids go undiagnosed or untreated.  Autism doesn't just affect families and individuals with autism; it affects all of us.  Ten and a half years ago, when my son was born, the rate of autism diagnosis in the U.S. was 1 in 1,000 kids.  Two years later, when he was diagnosed, the rate of diagnosis was 1 in 500.  Today, the official rate of diagnosis is 1 in 110, though one recent study found a rate as high as 1 in 38.  This is a substantial segment of the population that will enter adulthood with limited communication abilities, impaired social skills, and behaviors that range from odd to dangerous. 

Unless we intervene. That's where Autism Speaks comes in.  Autism Speaks provides the big voice we need in educating our community about what autism is and is not, what can be done about it, and why we should ALL care about it.  Autism Speaks is helping families and individuals connect with the services they need and with each other so that we can know we are not crazy, we are not alone, we are not powerless. 

Most of all, Autism Speaks is funding the kind of big research we need in order to provide empirical evidence that our insurance companies and school systems and legislatures demand.  Until we have some scientific answers about the causes of and treatments for autism, we will never make any real progress.  This can only happen if we are willing to fund the kind of science Autism Speaks is already making possible.  It gives me great hope to know that Autism Speaks is already changing things for kids like Harper. 

The research is already producing new hope, the awareness programs are working, and the Walk events are empowering for all of us.  It is my hope that the next generation of families will not have to go through the kind of confusion, frustration, and hopelessness that this one is facing, and that ultimately we won't need to do this work any longer.  That's why I do what I do.  I walk for Harper and the thousands of kids like him, and I hope you will join me in supporting this cause.

For more information on Jennifer, you can visit her team page, Harper's Heroes.

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