By Larkin Taylor-Parker
Disagreements between stakeholders of various kinds are fairly common in the disability community, but conflict plagues autism discourse. The place of parents is particularly contentious. As I prepared for this post, I glanced around the Internet for what had already been said. There are too many existing attempts to fix this with a blog post, or, worse, one that oversimplifies the conflict or makes a straw man of one side. I decided this would not be another iteration of an endemic, useless thing. As I read others’ thoughts on the subject, I happened on a year-old article called Who Should Lead the Autism Rights Movement? Instantly, I knew how to articulate the problem and solution.
The answer to that question is obvious: people whose lives are most shaped by society’s decisions on what to do with autistic people deserve the final say. Social change that undermines oppression has never been ally-led. Agency as charitable donation is a contradiction in terms. We must take it for ourselves, not wait until others deign to bestow it. The thrust of every argument I have seen against our leadership is that we are too disabled to have a say in our future. I see this sentiment often. It comes couched in sympathy, recommended for convenience’s sake, and presented in the tired terminology of a moldy eugenics textbook in my vintage and antiquarian collection. I have never seen these claims hold up to scrutiny. The arguments are full of transparent fallacies. Besides, Autistics and other people with disabilities are challenging notions of our incapacity in numbers hard to dismiss as anecdotal evidence. Given a measure of control over our lives, we usually improve them. We will always know more about how to do that than allistic* people. We know our priorities, experiences, needs.
Parents may not be able to set the agenda, but they have a natural role in neurodiversity and disability rights efforts. It is partly restraint. They can be quiet in our safe spaces and encourage others to do likewise. They can stop calling anyone capable of typing insufficiently disabled to have valid opinions. They can stop speaking for and talking over us. However, not everything we need from them is passivity. There are active roles no one could better fulfill.
The media asks them about autism before it does us. Parents have the opportunity to amplify our voices where they would otherwise be ignored, redirect questions, challenge purely negative perceptions. Parents can raise money for worthy causes and organizations. The silver lining of the Autism Speaks problem is that many learned fundraising. Parents can raise assertive autistic children with a healthy sense of self-worth. They can bring up kids who carve a place for themselves in the world and understand their right to be here. Parents can stand with autistic children and adults as we demand a fair chance at rich, full, dignified lives.
As parents work to ensure they are on our side, autistics should help. We must find a healthy middle ground between the extremes of ignoring ableism and writing decent people off for one ignorant word. This is more than being humane. It is pragmatism. We need allies more than most groups. At just over one percent of the population, we will never have the numbers to go it alone.
Editor’s Note: This post was originally published in 2012 and has been updated with a new author bio as well as a new featured image.