Tag Archives: Autism Speaks

Who’s Speaking for Whom?

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people-not-puzzles-300x225So there was a bit of a dust-up in the autism community this past week. Suzanne Wright, one of the co-founders of the well-known advocacy group Autism Speaks, published an article about the group’s conference in Washington, DC. In the article, Wright characterized families touched by autism in rather vivid terms:

These families are not living. They are existing. Breathing—yes. Eating—yes. Sleeping—maybe. Working—most definitely—24/7.

Wright goes on to describe the challenges that many families with autism face: financial worries, therapy challenges, concerns about their children’s health and safety, anxieties about the future. All in an attempt to rouse policymakers to come up with some kind of strategy to address the coming “national emergency” of all these autistic children growing up and becoming a huge burden on society:

Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.

It’s an impassioned, heartfelt call—even a demand—for action.

An Aspie Pushes Back.

Well, many people with autism found the letter deeply offensive. They thought that it overemphasized the burden that many families face and, worse, that it dehumanized the people with autism that Autism Speaks purports to speak for. Painting an extreme picture, Wright gave the impression that all people with autism are as helpless as those with the most extreme forms of the disorder. They are all part of a “national emergency” that needs to be addressed immediately. Critics also detected a subtext implying that the goal of Autism Speaks was to rid the world of people with autism: to cure it and prevent it. And they saw in that desire a rejection of who they are.

The article was so one-sided that even a member of the organization’s science board—an fellow with Asperger syndrome named John Elder Robison—resigned his position in protest.

We do not like hearing that we are defective or diseased, he wrote. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people.

This isn’t the first time that Autism Speaks has drawn fire like this. In 2009, the organization produced a video, I Am Autism, that also painted a bleak picture of the disorder. In it, autism itself spoke about how it is coming to take away our children, bankrupt us, and destroy our marriages. It spoke, again, as if children with autism were so defective that they were no longer “there.”

A Two-Edged Sword.

All this controversy got me thinking some more about my own experience.

On one hand, I can relate to the picture painted by Autism Speaks. I know what it’s like to be scared about my children’s future. I know what it’s like to feel worn to the bone from dealing with autism-related challenges from my kids. I know how it feels to face financial limitations or to have to explain one or another child’s unusual manner to a neighbor at the park or a stranger at the store. I know what it’s like to grieve when the news of a child’s diagnosis is delivered—I’ve done that one six times!

But that’s not the whole story. My kids aren’t problems. They aren’t the sum of their challenges. They are smart, funny, and innocent. They are perceptive, clever, and talented. The more I get to know what makes them tick, the more I am learning that autism is behind some of the things that make them so awesome.

Moving toward Acceptance.

I see how Autism Speaks’ approach can strike a chord, especially among those with young children or those struggling to embrace a recent diagnosis. In a sense, they’re saying, “Hey, we get it. It’s hard. It’s painful. It’s scary. But you’re not alone. We’re here, and we understand how tough this is.”

I don’t think, however, we’re meant to stay at this point of feeling overwhelmed, terrified, or devastated. In each autism-touched family that I know, there comes a point when everyone calms down, takes a breath, and readjusts their expectations. There comes a point when they are able to look past the label and see the beauty and goodness in their children. It’s supposed to be a natural progression, like the five stages of grief identified by Elisabeth Kübler-Ross: denial, anger, bargaining, depression, and acceptance. Sooner or later, you have to get to acceptance. You can’t stay stuck in anger or depression. You have to keep moving—if only because your kids are moving, and you have to keep up with them!

By constantly banging the drum about a national epidemic, by playing the fear card over and over again, organizations like Autism Speaks inhibit people from moving to the point of accepting their children as precious gifts from God. They also are complicit in fostering a kind of victim mentality in families touched by autism. “Look at how hard our lives are. Look at how damaged our children are. Pity us! Help us!”

Who’s Talking?

In the past, I supported Autism Speaks 100 percent. I wore their lapel pin and wrist band to help raise awareness. I followed their blog. I attended seminars sponsored by them. I even raised a good amount of money for them.

But now I’m not so sure. As John Elder Robison said, I’m not sure that Autism Speaks really does speak for my kids. I don’t want my kids growing up feeling like victims. I want them to be victors. I want them to use all their gifts—even the ones that autism has given them—to show the world that people like them can make a huge difference. I want them to embrace everything about who they are, even their autism, and turn it into something that glorifies God and lifts up the people around them. And they can’t do that if they think of themselves as problems or burdens.

Autism awareness is important, but only if it leads to acceptance. Not just pity or tolerance but acceptance.

A Very Blue Saturday Morning

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Well, today was the big day. After six months of preparation and fundraising, our whole family took part in the 2012 Walk Now for Autism Speaks in Jacksonville.

Actually, the “event” began last night, when I got my hair dyed—and my two oldest kids decided to join me. Lee Trevino—yes, that’s his real name—has been cutting my hair for years, and when I told him about my scheme, he immediately volunteered his time to do the actual dyeing. I was willing to come in during his work schedule and pay whatever he charged for such a job, but Lee wanted to donate his time instead. I couldn’t talk him out of it. He has met most of my kids over the years, heard me tell stories about them, and has himself watched them grow up. So on one level it makes sense. But still it was very generous of this talented young Christian man to make a contribution that only he could make.

First up was me, with the full-head treatment. Then came my daughter, who wanted a couple of streaks. Then it was my son’s turn, and he went for a Mohawk.

 

The next morning, Katie decided the other kids should get a chance to join in the fun. She had secretly bought some more spray-on dye and offered to color anyone’s hair who wanted it. Our two boys in the middle opted out, but the little, fun-loving ones, couldn’t wait. And, of course, Katie decided she’d give it a whirl.

So we got to the place for the walk—an outdoor retail/gathering place along the St. Johns River called The Landing. It was crawling with people from all over Northeast Florida, far more than the last one we attended in 2010. We were even joined by visitors from far, far away.

 

No, seriously. A group of Star Wars cosplayers was there in full gear. I spoke with one of the Storm Troopers, and he told me that the group gathers every other week for their own stuff, but they also like to attend charity events like this one to lift people’s spirits.

So anyway, after a bit of time hearing moving testimonies from a couple of people—parents of children with autism and the like—the emcee gave a countdown. And everyone began to walk. It was a one-mile round-trip walk along the river. Nothing too challenging, considering the number of children involved—and not a few wheelchairs. So we walked.

 

When we got back to The Landing, we were all cheered in by the emcee. It was a beautiful day—some clouds, around 84 degrees, with a nice breeze off the river. There was even a Kids Zone set up with a bounce house, animal balloons, and a Home Depot kid-builder spot. Best of all, the kids managed to keep it together (for the most part) the whole morning.

So that’s what happened—at least as far as the little ones were concerned. Katie and I knew something much more important was happening. Thousands of people gathered to celebrate the special people in their lives. They banded together to raise their voice on behalf of the millions of people who have an autism spectrum disorder. They raised nearly $70,000.00 to help raise awareness, fund research, and advocate for this unique and growing population. It was a very positive, almost jubilant, atmosphere as we all saw how many we were. I’ve said it before: dealing with ASDs can make people feel pretty much alone out there. So events like this walk are vital in showing us that we are far from alone!

So we did it. All of us. All of you. You helped me reach my goal, and for that I am exceedingly grateful. You told me that Katie and I have real friends all over the country. Friends who support us. Friends who pray for and with us. Friends who want to help us make a real difference. Thank you so much for your help!

Oh, I almost forgot. Here’s what I looked like all morning long:

Yep, you did that, too!

A Whole Blue World

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As many of you know, I reached my fundraising goal of $1,500.00 late last month. What a great feeling, both being able to raise so much and seeing the support that so many friends have given us. Every donation has been a moving testimony to Katie and me that we’re not alone in this journey.

But as inspiring as it has been to come this far, I believe we can go farther. I know there are still people out there who need just a little more encouragement—or a couple more reminders. There are still aunts and uncles, cousins and godparents, co-workers and neighbors, friends and even frenemies out there, just waiting for another invitation.

So here’s the new incentive. If I can get to the $2,000.00 level before the walk, I’ll dye my whole head blue. Yup—the entire cranium. All it takes is $500.00. That’s just $50.00 from 10 people. Or $100.00 from 5 people. Or $25.00 from 20 people. That’s not too hard to imagine, is it?

And if you do give, here’s how your donation will be put to work.

First, there’s Autism Speaks’ research program, which makes grants to pediatricians, geneticists, psychologists, neurologists, and other professionals delving into the causes and treatments of autism spectrum disorders. The program also includes the Autism Genetic Research Exchange (AGRE), which is building a comprehensive research database comprised of DNA, clinical, and medical information from families with two or more children on the autism spectrum. Needless to say, our family is a mother lode of information for them! We’ve been part of the AGRE project for the past three years, and it feels great knowing that we’re able to help.

There are also a number of online tool kits developed by Autism Speaks. The most popular is their 100 Day Kit, which was created for parents of newly-diagnosed children. Those first few months are often filled with anxiety and loads of questions, and this online tool offers expert guidance to help parents acclimate themselves to their new reality. Other tool kits give parents information concerning medication options, various behavioral treatments, and navigating challenging events like dental visits and potty training.

Next, there’s Autism Votes, the lobbying arm of Autism Speaks. The purpose of this group is to advocate for laws that will protect people on the spectrum. Some states still don’t require insurance companies to cover behavior therapy or speech and occupational therapies to people with an ASD diagnosis. Autism Votes is in these states, working to convince lawmakers that the upfront cost of these requirements is far less than the long-term costs of caring for people who never learned the skills they needed to help them function in the outside world. Autism Votes was also instrumental in getting the Combating Autism Reauthorization Act (CARA) through the House and Senate. This act secured nearly $700 million in federal dollars over three years for autism research, treatment, and services. It’s still not where it should be, but at least there’s movement.

See how much good you’ll be doing if you make a pledge? It’s not about making me dye my hair blue; it’s about helping to improve the lives of families touched by ASD. It’s about figuring out what causes this thing in the first place. It’s about making the world a more welcoming place for folks on the spectrum. So if you haven’t made a donation yet, go ahead. Push me over the $2,000.00 mark. You can help make a difference in so many lives. And if you’ve already donated, thank you so much. You’ve already made a huge difference!