The first @CDCgov study of autism in adults has just been released, with the CDC finding that at least 1-in-45 adults in the United States is autistic.

That’s 4.7 million people.

Story Link: https://amp.cnn.com/cnn/2020/05/11/health/autism-adults-cdc-health/index.html

Given that those numbers track closely with adolescent numbers, we can reasonable assume that the age distribution of autistic people in the United States mirrors the general population.

That means that 74.3% of autistic people in the United States are adults.

Yet, nearly all autism organizations & research funding in the United States is focused either on adolescents or on figuring out why we exist.

Numbers can be crunched different ways, but autism funding to assist autistic adults roughly ranges between 1% and 7% of total spending.

Despite 4.7 million autistic adults in the U.S., almost NONE of the thousands of national, state, and local autism organizations and service providers have autistic adults on their Board or Directors or leadership staff (some have one token member...which is equally bad).

Why?

Whenever I broach this with autism groups and service providers, the responses are generally:

1) To explain why we, as autistic adults, are not worthy of making decisions about services for autistic people.

2) To state the group is “open” but can’t find any autistic adults...

I could go into the first response for hours (and many other autistic people have). In short: It’s a false argument meant to dismiss and marginalize autistic adults and silence our voices. Nearly every marginalized group has been subject to this treatment by “helpful allies”...

So, I’ll focus on the second, where allies say they’re “open” but can’t find autistic adults. That’s the same argument every tech company with a nearly all-white male staff gives when pressed as to why their company isn’t representative of society (See @adblanche for more)...

The FIRST job of every autism organization or service provider is to find autistic adults to guide its creation, advise, lead, and implement its mission. That’s the FIRST job.

Everything. Else. Must. Be. Built. From. That.

Everything.

This isn’t about autistic adults. It’s about improved outcomes for autistic children, autistic adults, parents and family members, scientific research, public policy, and society.

Show me the top neurotupical autism experts, and I’ll show you things about autism they don’t see.

That’s not to knock our allies (shout out to people like @SueReviews who model this effective approach every day).

We’ve just been spinning our wheels on autism research and services for decades. The reason is that MILLIONS of autistic people have been sidelined in all of this.

I spend a lot of time voluntarily meeting with parents to answer questions, answer their emails & questions online. Other autistic people do too. I LOVE doing that, but I’m exhausted.

Autistic adults shouldn’t be the solution to the info and help autism groups fail to provide.

That’s why autistic people must be centered in everything about us. Our knowledge of the nuances about autism that others don’t see has proven to be helpful again, and again and again.

Bringing that knowledge to the front end designs better research and services.

I could help 50 individual families at my own time expense, or I can advise a group that has the capacity to help hundreds, or thousands, of families.

Parents deserve more than they are receiving today, autistic children deserve more, autistic adults deserve more.

It’s time to tap the large resource that is autistic adults. There are hundreds of ways to do that and millions of ways we can assist.

Some of us are autism experts, researchers, and educators, yes. However, ALL autistic people have advice to give.