Autism Society's Response to Autism Speaks Blog
November 14, 2013
By Scott Badesch
“Change is the law of life. And those who look only to the past or present are certain to miss the future.” - John F. Kennedy
As the parent of an adult with autism, I have the honor of serving as President/CEO of the Autism Society of America, a leading national organization representing the autism community for more than 45 years. This week, there have been many conversations surrounding the Autism Speaks National Policy and Action Summit on how to address the needs of individuals with autism and their families as well as comments describing individuals with autism. We believe we must change our collective approach and actions to making our nation more caring, responsive and accountable to the over 3 million individuals who live with an autism spectrum disorder.
John Elder Robison spoke bravely this week when he declared that he wants a better life for all individuals on the autism spectrum. The Autism Society agrees and does not believe nor accept the description of a person with autism as described in a recent Autism Speaks blog. The Autism Society believes that every person with autism is a human being who is deserving of a compassionate and caring society, that always treats each person with respect, dignity and value. We also believe that every individual with autism has a fundamental right to live in a world where they are valued and provided full dignity, to maximize the highest quality of life possible. To define any person with autism as anything less is wrong. To consider a child or adult with a disability as a burden as some do leads to stereotypes that are damaging and insulting to so many of us.
If we value, respect and seek the highest level of dignity for an individual with autism, we must ensure that our decisions and actions are inclusive of all. The efforts of the Autism Society’s volunteers, affiliates and staff over time have resulted in the successful launch of a number of pieces of legislation aimed at protecting the rights of individuals and ensuring legislation mandating education and other services follow the principles of respect, dignity and value of all persons with autism. We must never talk about autism without the voice of individuals with autism guiding our response.
What we have historically done to effect change among the autism community hasn’t worked as well as it must for the 3 million people who desperately seek change. I would argue that until we change our message to define individuals with autism as being disabled not exclusively by autism, but by poverty, discrimination, the lack of right to self-determination and unemployment, we will end up attempting to fight our battle alone and without others who can help our cause.
So what is needed to make change possible? We must always respect, dignify and value the life and purpose of each person with autism. We also must recognize that while autism doesn’t discriminate based on race or income or culture, our responses often appear to do so. Efforts to get insurance coverage is commendable, but when parents have young children with autism and live in low-income communities where there are no services or response systems in that community, our efforts are not successful. Autism remains to be a have and have nots issue and this must change. We can’t continue to have a nation where those with money can help their child or help themselves while those without money can’t.
While we must seek a more effective response from government, we must also not place the full burden on government and we must respect that there are hundreds of organizations, with limited budgets, doing amazing work and are rarely, if ever, at the front of the stage. They show each day their effectiveness and they should be included in the conversation and supported in achieving their critical positive impacts across the country.
We are all in this together and no one organization can speak for all of us. Seeking ownership over collaboration will not affect the needed change. Groups that don’t respect the value of self advocates, the need for active inclusion and self-determination need not apply.
Autism Society will continue to work with all who respect, value and endeavor to assure the highest dignity possible for all who live with autism. No one said it is easy, but it is now beyond the time to figure out how to change our community. Imagine if we could develop a collective voice. Our power would be so effective!
April 10, 2013
The Autism Society, the nation’s largest and oldest grassroots autism organization, has chosen Pittsburgh as the host city of its 44th annual conference on autism spectrum disorders.
April 5, 2013
Individuals with autism can attend the Autism Society National Conference and Exposition (in Pittsburgh) for FREE this year! Learn more: www.autism-society.org/conference.
April 3, 2013
Monarch Teaching Technologies, the makers of VizZle®, web-based educational software for visual learners with autism, will give one-year of free VizZle to every new (or renewing) Champion Member during April.
April 2, 2013
Read the Autism Society’s digital magazine about autism spectrum disorders!
April 2, 2013
Today, throughout the world, individuals will come together highlighting the needs and dreams of people living with autism.