Monday, November 18, 2013

This is Autism

image of the words This Is Autism

My issues with Autism Speaks as an organization have a very basic root. Two grandparents who hate autism and want to eradicate it founded Autism Speaks.  Everything Autism Speaks has done since February of 2005 has been driven by a view of disability in general and autism in particular that is antiquated and is causing great harm when the intention is to do good for the autism community.

My amazing son was diagnosed with autism before Autism Speaks was founded.
He is autism.
Image description: multiracial male child
sitting with back to camera wearing a Baltimore Raven's cap
Before Autism Speaks began its avaricious acquisitions of every nonprofit raising funds for autism research, prior to their overwhelming, depressing presentation of autism to the world, our family lived, loved, and sought out people and organizations locally who really helped improve our son’s quality of life. Our son has gotten opportunities to swim, acquired needed supports and adaptive equipment, all because of nonprofit organizations and autistic activists that most people have not even heard of outside of our area. None of these organizations were Autism Speaks. People have taken him to Amish country, given him trucks, pumpkins, hugs, stuffed bears, books, iPad apps, and holiday lights. But the most important gift he’s received is one that Autism Speaks refuses to give: respect.

When people learn my son is autistic and has a great many challenges, their first response is to encourage me to raise money for Autism Speaks. My son cannot be near that loud assault on everyone’s senses that is their annual walk in D.C. I can’t be there. It is, like everything in the Autism Speaks brand, very unfriendly to autistic children and adults, and too much of the wrong things for the wrong reasons.

Suzanne and Bob Wright grew up during the era of the Jerry Lewis telethon fund raising approach. Children were used without thought that they were human beings and humiliated in the name of raising money for a cause. Apparently, Mr. and Mrs. Wright have not seen the documentary “The Kids are All Right”. I don’t know. I just know that from their very first nationwide public service announcement attempt, “Autism Every Day”, my family stood back in open-mouthed horror, saying Autism Speaks is not the way to help our family.

Our point of view on the statement “this is autism” is akin to that of Christopher Reeve, who drove change in the way researchers approach solutions for disability by issuing a challenge described anecdotally during a TED talk by Prof.  Grégoire Courtine.  Mr. Reeve demanded researchers think beyond the lab and “go to the rehab center, “watch people fighting to take a step” — and then figure out what he could do in the laboratory to make those people’s lives better.” Courtine makes a very critical point prior to any further discussion of his research. He describes Mr. Reeve as one of his mentors and states clearly that Mr. Reeve’s challenge resulted in an interdisciplinary approach to research on spinal cord injury.  He later makes it clear that the goal of the team is to produce a series of minute prosthetic devices that can work as any assistive technology device or support would; that is to say, the devices would assist and meet the individual needs to accommodate individual impairment and allow the brain to adjust itself and reduce the impairment. This is qualitatively different from the idea of a cure.

Autistic activists as mentors? Yes. This is autism.

One of our biggest wars in the autism community is that those insisting on driving policy, research, and decisions affecting our children’s entire lives don’t have respect for the most important stakeholders in this community: the autistic people themselves. The disrespected population includes our children. Our children, you see are growing up. These very capable, competent people, who should be seen as our mentors, are shouting the same challenge to researchers, educators, nonprofits, and caregivers who insist they speak for my son and his peers when they’ve never met him. They are saying listen to us. Listen to the primary stakeholders in this. First listen to the challenges, needs, and experiences of my son’s people. Then include them meaningfully in your decision making process.

Autism has great diversity in the way it is expressed. So each individual has different needs. How then does Autism Speaks think it can demand a national plan alone while continuing to exclude those it claims to represent?

I fight the Autism Wars for my son, the great and powerful Mu. How can anyone look at the efforts my son makes each day to gain mastery over any task and not respect him? Could you remain kind and patient while people discuss how your existence destroys lives and wail about what a burden everyone like you is? These things are said in front of autistic adults and children who can read, hear, and understand.  How dare anyone see my son as less human than the any other person? He has climbed mountains compared to children his age. He has forded rivers of impairment and conquered them. He does not want any organization presenting him as something to be pitied, behaviorally contained, chemically lobotomized. He is learning to do things autonomously. He is using technology to be independent. So how is it that someone who knows that battlefront and is a veteran of it is not respected enough to be at the forefront of any discussion about how to accommodate, include, and accept him?

Respect is autism. 
Representation is autism. 
Inclusion is autism.
Autonomy is autism. 
Accommodation is autism. 
Acceptance is autism.

These things are autism. We, our family, reject anything less.

Autism Speaks is wrong. I stand by my son and demand his right to representation in any discussion on what the future of the autistic population is. Considering that the only autistic person in Autism Speaks resigned calling on Autism Speaks to respect autistic people and give them representation in their own affairs, I think that the  Congressional Autism Caucus, and every other stakeholder in national policy, health care, research, education, and community life should listen to people who truly represent our son.

Autistic people are autism.

Dear Autism Speaks. It is time for a road trip. Leave the bubble of your antiquated ableist views of what disability is and stop speaking for those you don’t understand. Travel the country; come as people who want to understand those who they present themselves are serving. Go to where autistic people are fighting for the dignity and human rights of their peers. Look at what is happening to families. Listen to autistic people. Listen to parents.

Most importantly, kindly stop disrespecting my son and his people.


  1. Well said. There is a grocery store in my neighborhood, part of a chain, Sprouts Market, whose CEO/President Doug Sanders, has a son with autism and has helped to raise $3 million for Autism Speaks. I believe the way to address Autism Speaks is to challenge the fear. Their sponsors need to see the reality that we see, that our young people with autism are amazing, talented, wonderful, compassionate individuals. My 21 year old daughter and some of her friends would like to meet with Mr. Sanders. Here is my petition.

  2. Thanks for taking the time to discuss this,I feel strongly about it and love learning more on this topic.

    autism ireland & gheel