Other than the specific information about how much money goes to executives, which is concerning, there wasn’t anything substantive in those links. Saying vague things without giving any examples is empty rhetoric and autism is an epidemic and a national health crisis. One in 58 children (1 in every 42 boys) will be diagnosed and the numbers keep climbing every year. In 2005 it was 1 in 166. People who are offended by that are refusing to acknowledge what autism is like for those who have a different experience then they do, what it costs to try to support their family members, and the stress that brings.

“A new study in the medical journal JAMA Pediatrics has pegged the total lifetime cost of supporting an individual with an ASD at an astonishing $1.4 million in the United States. If there is also intellectual disability, the total rises even more, to $2.4 million.” Autism is a profound disability for millions of people and an incredible emotional and financial hardship for those who are caring for them. Not acknowledging that is insensitive, othering, and erasing of those who have that experience.

My impression of AS comes from direct personal experience working closely with them over 6 years to get insurance reform passed in our state. It doesn’t come from reading inflammatory rhetoric. Many of the folks we dealt from AS have kids on the spectrum. The legislative director for AS has 3, which is why she was so driven to see that all states would have at least some autism-related health care covered by insurance. But if someone has never needed autism-related health care, whether or not it’s covered in their insurance probably doesn’t even register for them. They have no problem screaming about the advocacy organization that drove those legislative efforts nationwide and are the main reason that any states have reform — something that helped millions of families, but who cares if it doesn’t impact me?

When we finally got insurance reform after 6 years of constant work, AS had a celebratory dinner for everyone who had worked on this. Some of them in attendance were parents, but many of them simply other folks who had assisted in this long and arduous legislative effort. By the end of the evening, there was not a dry eye in the whole place. I’ve never seen so many adult men in tears before. In the face of that kind of direct experience with AS as caring and engaged, vague aspersions are meaningless to me, particularly when they come from those who turn a blind eye to different experiences of autism other than their own and pretend that those not only don’t count but that they don’t even exist.

Are there ways that AS could improve? I don’t doubt that there are, but making them out to be hateful monsters who despise and vilify people on the spectrum is just ugly spite that further makes invisible the people for whom their organization is really helpful and matters. You are not the voice of people on the spectrum. You are only one aspect of it.

My son went to a special center because he couldn’t get the help he needed in regular school and couldn’t have functioned there anyway. The school did a huge amount of fundraising every year to be able to offer many, many scholarships, and to have greater outreach in the community. AS folks always came to those fundraisers to offer both financial and moral support for all the kids who couldn’t go to regular school, or who couldn’t go right away but might be able to make it later on with the right kinds of interventions.

The only real discrimination I’ve ever seen or experienced has come from people whose lives are impacted by autism, but who have no concept of how “normal” their lives truly are compared to the families with kids with co-morbid health issues, cognitive impairment, seizures, etc. Those are people who will never marry or hold down jobs or even live on their own. They will never write articles and post them on the internet. As I said in the OP, those kinds of people who go around declaring that all any autistic person needs is greater acceptance and who have no understanding that their experience of autism is not the only one — those people are the problem in my book. They are also typically, the ones who hate AS.

So unless you can provide me with some specific thing that they have said that is actually offensive and not just speaking the truth about the autism epidemic, I think we’re going to have to just agree to disagree.

Dispelling cultural myths with research-driven stories. My favorite word is “specious.” Not fragile like a flower; fragile like a bomb! Twitter @ElleBeau

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store