Autism Needs Progress, Not Self-Obsessed Celebrities

For three years now the autism community has declared April Autism Awareness Month and Friday, April 2nd was World Autism Day. I turned on the TV to see how the mainstream media would advance the autism conversation. To my disappointment there has been very little progress.

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Matt Lauer and NBC seemed to make a conscious decision to lend support by promoting celebrities’ wares rather than providing much needed information to the autism community. The Today Show featured an interview with actress Holly Robinson Peete and her former pro-football player husband, Rodney, promoting their two new books about autism. They told the story of how depressed they were when they received the diagnosis and how tough it was on their marriage. At the time, they were informed that their child wouldn’t speak, be social or play organized sports.

Then, I turned to the Internet and saw Jenny McCarthy begging people to vote for her anti-vaccination charity, Generation Rescue, to win $250K from the “Pepsi Refresh Everything Project.” In a somewhat crazed plea, McCarthy promises that she will spend everyday for the rest of her life helping raise money for these autistic kids. And then I heard something from way out in left field. Yoko Ono was named the first-ever “World Autism Ambassador” by Autism Speaks. Huh?

The month was getting off to a bad start and then something good happened. HBO aired “A Mother’s Courage: Talking Back to Autism.” This was an informative and fascinating documentary of an Icelandic mother’s quest to help her severely autistic son. Interspersed with hopeful and educational conversations with Temple Grandin, Simon Baron-Cohen and Soma Mukhopadhyay, Kate Winslet narrates this mother’s journey of discovery.

Apparently, the type of awareness that Jenny McCarthy and Holly Robinson Peete are spreading is not helping Margaret Dagmar Ericsdottir or her son. This former businesswoman turned full-time mother was so starved for helpful information that she had to travel the globe with a film crew to find a way to actually help her severely autistic son, Keli, communicate. “A Mother’s Courage” was refreshing in that it moved past hearing about how hard it is for parents to accept an autism diagnosis and move toward improving the quality of life of autistic individuals. Acceptance, understanding and progress are what autistic people need, not celebrities selling books and declaring war on the CDC.

When I listened to Holly and Rodney talk about the day their son received his diagnosis, I cringed a bit. What kind of doctor tells parents that their children are hopeless? Further, who believes it?

Our story began like many others. Early on, our son met all his developmental milestones and, from the outside, everything seemed normal. However, deep down, we always knew he was different. When he was three months old, we considered that he might be deaf or blind. We did our own test and both seemed satisfied with the results. He seemed incredibly bright, although a bit non-social, so we didn’t initially worry when the speech never came. Sure there were sounds and attempts, but by 18 months we hardly got more of an “Mmmm” or “Buh” out of him. There was flapping, poor eye contact, spinning and some screaming but, this being our only child, what did we know? There was even a bout of ear infections and high fever close to the time he received some vaccinations. In retrospect, this could have provided the anecdotal evidence needed if we were inclined to blame vaccines—but when we remembered all the other issues, it didn’t make sense. While our son was undergoing a hearing test, I overheard one technician say the word “autism”. This prompted us to do some research and we scheduled an appointment with the regional center to see if, in fact, our child was autistic.

After an examination, I listened to a psychologist deliver the news. She handed me some pamphlets and then said: “You will need some time to digest this information. Discuss it with your husband and allow yourself to grieve.”

“Grieve?” I questioned her choice of words. “My son’s not gonna die or anything, is he?”

“Oh, of course not.” She said. Well then, why would I grieve? My husband and I were actually relieved when our son was diagnosed with autism. Now that we had some answers, it was time to make a plan and get to work.

Conventional wisdom states that there is a higher divorce rate among parents of autistic children. A study conducted in 2008 by Harris Interactive for Easter Seals in cooperation with the Autism Society of America found divorce rates for parents of Autistic children lower than those for families with no children with disabilities. Every marriage has its share of stress and strain, but ours seemed to flourish with the acceptance of our role as parents of an autistic child. Just like all other parents, we needed to teach our child how to communicate, socialize, and behave appropriately. We just needed to go about it differently.

Let’s get back to the celebrities, for I know how upset they get when they are no longer the center of attention. The truth is plain and simple. Jenny McCarthy wants to continue her battle against the CDC and keep her name in the news as much as possible. What I find sad is that there are several charities also competing for Pepsi’s money that are much more deserving. I found one deserving cause called Miracles Kidcare that is trying to open a treatment center for children with life threatening diseases. Maybe it’s just me, but I would like to see children with life threatening diseases get treatment and see any autism funds go toward better services for autistic people rather than McCarthy’s pseudo-science charity.

A parent desperately searching for a way to communicate with a severely autistic child takes little solace from hearing about how disappointed Mr. Peete was to find out that his son would never be a professional athlete. She might, however, love to hear about those moments when Rodney and his son really connected. And let’s not forget Yoko Ono (I know, I forgot about her too). But really, does the autism community need Yoko Ono as their World Autism Ambassador just because she allowed a pro-eugenics organization like Autism Speaks to auction her painting?

I thank this Icelandic mother for embarking on this mission to help her son. I learned a lot about communication and the autistic brain. I saw a mother receive hope for the very first time that her son can learn how to communicate and express his desires and fears. If there are any parents who are ready to give up on their child’s ability to communicate, they should watch this documentary. There is another important lesson to learn here: Just because someone is non-verbal it doesn’t mean that they don’t understand what you are saying or writing about them. I get so upset when I hear someone talk about how hopeless their child is while in their presence. This can’t have a good effect on the child’s overall psyche.

Once again, we’ve learned that celebrities do not have the answers. Sure, they look good on camera and can deliver a line better than average folks, but they are missing out on something important in the case of autism. Parents don’t need pseudo science and anecdotes. They need real life experiences and tried and tested information. Maybe next year we will move away from the celebrities and move toward progress.

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