Mom, lawyer and advocate Areva Martin was at the United Nations and at Border’s bookstore on April 1 discussing her new book The Everyday Advocate: Standing Up for Your Child with Autism. The book provides practical strategies, solutions and resources. As the mother of a child with autism, Ms. Martin hopes to empower other parents and caregivers to stand up for themselves and their loved ones.
Ms. Martin led an animated discussion of her book and signed copies of her new book at Borders in New York City. There were many questions from the group about advocacy, causes of autism, treatments and more. The book can be purchased through Borders, Barnes & Noble or amazon.com.
This guest post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.
One night in the spring of 1988, I sat cross-legged on the floor of a chapel. I was in my first year at Mount Holyoke and my roommate had asked me to ride the bus with her over the mountain to Amherst College. The guest speaker that evening was Coretta Scott King – an opportunity of a lifetime. How could I turn that down?
So there I sat, listening to her melodious voice, hanging on every word until I walked out of that chapel changed and determined to change something. I wanted to be like her, inspiring people into action, but for what purpose?
Twenty-two years later, I work on civil rights issues for children with autism daily through Autism Votes – an Autism Speaks initiative. State by state, the dominoes convincing politicians that it is inappropriate to allow marketplace discriminatory practices to continue against our children are falling. They are beginning to agree with our community that it’s unacceptable for insurance companies to accept premiums from parents while simultaneously denying coverage for the treatments and therapies their children’s physician prescribes.
Our volunteers will tell you I often compare the tedious, slow growth of an advocacy program to eating their vegetables – necessary but not glamorous. Like a nagging mother at the dinner table, I remind them that splashy rallies, hearings, press conferences, victories are all sweet, but you won’t get dessert without eating your veggies. Not in my house. Not in political arenas either.
This spring, we initiated an internship program at Mount Holyoke for a data entry project to more quickly strengthen our advocacy base. I knew these women would be socially aware, committed to making a difference. I knew that the College doesn’t generally offer internships during the semester where they can garner skills to help them find a meaningful summer employment.
My recruitment trip last week was successful. I found eight willing young women hailing from three countries and six states. All first years, none of them know what they want to be when they graduate, nor do they know anything about autism – yet. Now, the possibility exists that they will enter any number of fields that will serve our community well or bring this newfound knowledge back to their countries to change autism communities there.
Autism Votes strives to make your participation easy so you feel empowered. We want you to be a part of each step changing this system – making it work for your family instead of spending your time and money railing against it. Your children deserve equal access to the medical treatments they need – today.
Eight young women you may never meet now want the same thing for your children. They caught the fire and the passion on that cold, snowy February day in Western Massachusetts. They have a mission now to change the world – your world.
Autism Votes. It’s time for lawmakers listen. More importantly, it’s time for you to tell them what you think.
Get involved today at www.autismvotes.org/.
By Geri Dawson, Chief Science Officer, Autism Speaks
This week, an unprecedented gathering of the autism advocacy community was held at the National Institutes of Health. Francis Collins, director of the nation’s largest agency focused on science and public health, met with members of diverse factions of the autism community to listen to their priorities and perspectives. As Collins noted early on in the meeting, the strife among the members of the autism community is “legendary,” sometimes scaring members of the scientific community who often will instead choose to study less controversial conditions. Not surprisingly, opinions expressed at the table were indeed diverse, ranging from those who believe that autism is caused by toxins in our environment and advocate that NIH’s efforts should be targeted on prevention to those who believe that autism shouldn’t even be considered a disorder and efforts should be directed instead at improving the quality of life of persons with autism spectrum disorder. Remarkably, however, finding common ground among the autism community became the theme of the meeting.
As different members of the community passionately spoke about the suffering of people with autism and their families and the urgency with which the NIH needs to respond to the autism public health crisis, it became clear that a large part of the divisiveness among the autism community is the result of the tremendous heterogeneity in the condition. Some who spoke were parents of children with autism who are nonverbal and suffer from debilitating medical conditions, such as GI problems and seizures, whereas others who spoke were persons with autism spectrum disorder themselves, who were able to eloquently describe the need for greater acceptance of persons on the autism spectrum. And while there remained significant differences of opinion regarding where NIH should direct its resources – whether on prevention, causes, more effective treatments, or services – the common sentiment emerged that our unified goal is to relieve the burden of autism in all of its forms and manifestations. Furthermore, there was a shared sense of urgency and recognition that the NIH needs to be more aggressive, coordinated, and directive in its pursuit of scientific discoveries that will have real impact on the lives of persons with autism spectrum disorder and their families.
The meeting ended with a few words of advice from the director of NIH. He suggested that the autism advocacy community will be more effective the more we find common ground. He noted that while there are real differences of opinion, we are all on the same team and we should remember to “respect the person while challenging the idea.” He urged the autism community to hold the NIH accountable. And finally, he talked about the importance of bringing together the basic scientists with people suffering from autism, noting that this personal connection made a difference in his own career and can be highly motivating for scientists, many of whom are trying to make a real difference in the world.
I personally left the meeting feeling more hopeful that the autism community can indeed work more respectfully and productively together by finding common ground. I believe that a unified voice will be critical for holding NIH accountable. Because of the scale of the public health crisis we face, we urgently need more scientific resources devoted to our cause. Together, we can make it happen.
Geraldine Dawson became Autism Speaks’ first chief science officer in January of 2008. In this role, Dawson serves as the scientific leader of Autism Speaks, working with the scientific community, stakeholders, and science staff, to shape, expand, and communicate the foundation’s scientific vision and strategy. Dawson is also Research Professor of Psychiatry at the University of North Carolina at Chapel Hill.