New Autism Speaks video: pissing people off all over the place

Different people can see the same thing and get something very different.

Autism Speaks, an advocacy group promoting the research for a cure, released a video for a World Focus on Autism event that coincided with the opening of the U.N. General Assembly in September. The video is called "I am Autism" and has raised concerns in the autism community.

The video as written by Grammy-nominated songwriter Billy Mann and directed by Academy Award–winning director Alfonso Cuarón who both have children with autism. The video shows a series of images of children with autism, accompanied by an ominous voice-over: "I am Autism ... I know where you live ... I live there too ... I work faster than pediatric AIDS, cancer and diabetes combined ... And if you are happily married, I will make sure that your marriage fails."

The tone of the video has added strain to an already touchy relationship between many adult with high functioning autism and the largest autism advocacy group.

According to a recent Time article, some autistic "self advocates" are furious over the tone of the video. "We don't want to be portrayed as burdens or objects of fear and pity," insists Ari Ne'eman, president of the Autistic Self-Advocacy Network, a 15-chapter group he built while attending college at the University of Maryland, Baltimore County. "Apparently, should my parents divorce, it's all my fault," says Ne'eman, who received a diagnosis of Asperger's syndrome, a relatively mild form of autism, at age 12.

Ne'eman's group has organized protest rallies around the country. These advocates argue that if Autism Speaks had more people with ASD on its board, its messages would be more sensitive to the individuals it seeks to help, and it might also devote more resources to improving services to people with autism now — as opposed to basic research and genetic studies that may not pay off for years.

"Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives," Ne'eman charges. He notes that other disability groups have moved away from using fear and pity in their media campaigns.

Peter Bell, executive vice president of Autism Speaks, said the video got plenty of positive responses from the autism community. "But we realized it did hurt a certain segment of the population, which is why we removed the video link from our website," he said.

The video, Bell said in an interview, is a personal expression by Mann and Cuarón, each of whom has a young child with autism. "They are at that stage of life where they are grieving and unsure what the future holds," he said.

Bell admitted that Autism Speaks does not have any individuals with autism currently serving on its board. "We are looking at adding individuals with autism to various advisory committees," he said. The group is also initiating a better outreach to adults with autism.

It is obvious that both sides are really working toward the same thing; working to raise awareness and assure help for all people with autism. In future let's hope their good efforts can be combined.

What do you think? Did the video go too far?

What about these spoofs? Did they go too far?

Warrior parents; blazing the advocacy trail

Parenting a child with special needs is a challenge, a promise, a gift, a heartache. It can be life transformative and may just be the hardest thing a person takes on in their life. At time, it can be a heavy load to bear and can be terribly stressing on marriages.

But the human spirit can be dazzling in its creative drive while searching for hope and purpose. We see this in special needs parents every day. Learning to cope is a difficult process and different for each of us but the passion and focus that comes out of the journey can literally change lives near and far.

The term warrior mother is almost getting familiar with its connotation of a controversial vaccine crusader. But there are “warrior parents” out there around every corner blazing trails, improving lives, making a difference. These parents are hidden in plain site pushing strollers, wheelchairs, playing with their kid in the park, trying to find the right school placement, sitting at IEP meetings, driving to specialist appointments. These parents, simply by the fact of working to better the life options for their own child, are advocating inclusion for all kids with special needs. These parents and the caring specialists that they gather around them create something bigger than the sum of its parts. A family, in a sense, that shares common purpose, knowing that there is a place in this world for all of us.

Introducing some of these "warrior parents" and connecting them with other parents of kids with special needs is a focus of an upcoming series. I encourage anyone to contact me with suggestions of "warrior parents" you would like to see profiled. But, this time allow me to introduce:

Kelly’s Kidz – Kelly and David Hermann wanted to do something to honor their daughter Maggie who has Cerebral Palsy. They got the idea of starting a non-profit that would help provide financial assistance and resources to physically-impaired children with special needs and to create an opportunity for them to lead the best life they can possibly live.

From the Kelly’s Kids website, the Hermann's frankly share their story and say, “Because we have been so fortunate, we wanted to create opportunities for other families like ours to be able to provide their special needs son or daughter with everything they need. Not everything is covered by insurance and not everyone can afford all of the special needs equipment that they would like for their child. So we started Kelly’s Kidz. Our goal is to be able to use our resources to help provide for others – regardless of income level – what they cannot obtain on their own. Additionally, we’d like to create awareness. So many people are seemingly ignorant to the ways of the disabled. They feel that they should either stare or just look away in pity. If you have a special needs child you know that both of these actions result in anger and disappointment. If the public were just a little bit more accepting and courteous to the disabled, it would make our jobs as parents easier.”