Whether it’s one voice helping one child, or many people joining together to effect change, advocacy can make a world of difference…
Twenty years ago, I was just about to graduate college with a communications degree. I was looking forward to a career in media. If anyone had told me at the time that most of my professional career would be spent advocating for kids with special needs, and even more specifically that I’d be speaking out against an overly aggressive and possibly unsafe vaccine schedule, I would have told them that they were nuts. After all, four years earlier I was the President of the Young Republican Club in high school. My father had just retired from the Navy, after twenty-five years. I was a Sunday school teacher. The idea that I would thumb my nose at the federal government as well as local school districts for most of my adult life would have been too hard for me to believe.
But as John Lennon wrote, “Life is what happens to you while you’re busy making other plans.” I met my husband, Jack, a week after college graduation in Pensacola, Florida, where he was going through flight school. In a few short years, we would be married. A couple of years later, our son Eric would be born—and that would change everything.
Bolt From The Blue
Like so many children on the autism spectrum, Eric developed typically for a period of time and then regressed. My extremely new “mommy sense” told me that his regression just wasn’t normal, and that it certainly wasn’t supposed to have happened. That sense of unease lit a fire deep inside of me.
When Eric received a diagnosis, I hit the ground running. I had to make things better for him and I had to make life better for our whole family, which by then included a newborn. Even though the year 2000 was just the beginning of the autism epidemic, I had the benefit of living in San Diego. San Diego was home to the Autism Research Institute (ARI), where Dr. Bernard Rimland had for decades carried out ground-breaking biomedical research. He had also done a tremendous amount of advocacy work for individuals on the spectrum. I had access to theories on treatments and therapies that most of the country would only know about later, and I believe the high level of functioning that Eric has attained today has much to do with the hard work of Dr. Rimland and ARI. I will forever be grateful to them.
However, this did not mean that the treatments I had learned about just landed in my lap or that the school district gave Eric the special programs and assistance he needed at our first IEP meeting. No, it took a lot of time researching on the computer to identify these things. Then in order to obtain these treatments and programs, it took a lot of advocacy.
From Little Acorns…
Advocacy typically involves many different activities, but it isn’t always linear or straightforward, and sometimes it isn’t even your child who benefits from your efforts. I learned this first-hand very early, when Eric’s IEP team decided that mainstreaming at our neighborhood school would be the best plan for his first year of grade school. My husband and I were elated with the notion that Eric was doing well enough to be mainstreamed—little did I know that this would be the beginning of “the year of agony,” as I refer to it.
The school ended up not supporting Eric properly for most of the year, and by the time spring rolled around that year, they wanted Eric out. I dug in and said that I would not let Eric be tossed from school to school with only weeks left in the school year. I needed the school to realize that many of his problems had occurred due to their inability to support him. I hired a professional advocate to help me, but although Eric finished out his year at our neighborhood school he was placed in a special day class the following year. I felt defeated in my advocacy. I wasn’t able to keep my son in a mainstream placement. Even with the help of a professional advocate, I wasn’t able to do it, and it was depressing.
However, something else happened. My advocate and I planted a seed at that school. Many of the teachers, aides, and administrators became aware of proper techniques for mainstreaming children on the spectrum because of Eric’s failed year. Nine years later, I often hear from families in my neighborhood who are happy with their mainstream placement for their ASD child at Eric’s old school. I feel confident that I had something to do with the change that occurred. It gives me great satisfaction to know that the advocacy I did for Eric—while unsuccessful for him—ended up helping a new generation of kids on the spectrum. And that is pretty amazing.
Advocating As An Individual
Advocacy by fire is how most parents gain experience helping their children—if you’ve ever lobbied for a certain treatment, therapy, program, or an accommodation for your child, you’re already an advocate. Whether it was making sure that your school district followed Free Appropriate Public Education (FAPE) laws, or obtaining more speech and OT through your health insurance, that was an act of advocacy. Now is the time to do more!
Knowledge is key in advocating: that’s why it involves attending meetings and doing research. When asking for a new therapy or school program, it’s essential that you have a deep level of understanding about it. Once you have that knowledge, you can formulate the reasons explaining why it’s a necessity for your child. Anticipate the objections from the school, state or insurance company to funding the therapy or program. Then put together a defense to counter their arguments. Preparation is vital when advocating for your child.
This is where I’d like to see more parents put their efforts. One voice helping one child works in the individual advocacy world. It can make a world of difference for one child or even one school, but it certainly doesn’t set the stage for the large transformation that is required to collectively help this new generation of individuals with autism. Many people coming together is necessary to achieve this goal.
As you can see from the sidebar (right), some advocacy work requires a village. If you have a talent for any of the tasks listed, get involved with our fantastic non-profits, many of which don’t have the resources to pay professionals to do the work that is needed for our kids. Think about which autism organization(s) you admire—almost all do advocacy on some level, so volunteer for one of these organizations. Think about where your talents lie, and volunteer that talent. If you’re a professional, use your vocational experience to help an autism organization. Having parents do what they do best for autism organizations is a magnificent scenario.
Lessons Learned From 10 Years of Advocacy
State government, federal government, school districts, and insurance companies are not going to help our children until they have to help. It seems counter intuitive, but these agencies aren’t really made up of leaders—instead they’re made up of followers. It’s up to us as advocates to change our communities and to change the court of public opinion so that these bureaucrats must start following us.
I hope this article has inspired many of you to advocate more for your child, and to also assist autism groups in their advocacy. There are days that I feel my work in advocacy is like riding a rollercoaster, due to the ups and downs I encounter. There are days where I don’t want to get into the rollercoaster car, but then I think of my sweet boy and all the others like him, and I decide that I’m not giving up on these individuals. Never. I think there are a lot of parents out there who feel the same. So let’s start changing things for them. As Margaret Mead so wisely said, “Never doubt the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.”
I have one last suggestion on advocacy. Even if you don’t think you have time to help, there is something each of us can do. I want you to tell your story of dealing with autism to others. I know that sounds simple, but it can have a large impact. Genuine, heartfelt stories about dealing with autism are very powerful. Sharing the story of your child’s development, struggles, and accomplishments will bring about greater understanding and compassion for those on the spectrum from others in your community. Your story lends a face to autism.