What really matters: Let’s focus what we in the autism community can agree on

Carly Fulgham with John Elder Robison

“We have spent so much time arguing about this and that that we can’t agree on anything. And agreement is the only way to make change.”

By Carly Fulgham

In February I wrote a blog about the words that matter. Frustrated at all the time I saw being spent around words that don’t really matter in the big scheme of things. I think it’s important to respect people’s wishes on what to be called if it’s known, but whether we’re called autistic or people with autism won’t improve service availability or affordability. Won’t get us into independent housing; won’t get us jobs.

Today I realized it’s even bigger than that, while watching John Elder Robison give the closing keynote speech at the Autism Society National Conference. He made the point that whether you love autism or hate it, whether you want a cure, or to be supported to fully integrate into the community, whether you think autism is caused by genetics or environmental factors like chemicals, we all have one thing in common. We want a better life for the people with autism that exist today. We’re not going to get it if we don’t stop the infighting. Blue, red, and gold are colors, not ways to improve our quality of life.

It was a topic that actually came up in several breakout sessions and side conversations throughout the conference. We have spent so much time arguing about this and that that we can’t agree on anything. And agreement is the only way to make change. We have no clear majority on the above issues and that’s fine. What we do need to find agreement on is policy.

One of the things I’ve learned as an inaugural member of the Autism Society of America’s Public Policy and Advocacy Committee is that policy change happens only when there is a clear consensus. Everyone who is asking for change has to agree and be willing to focus the conversation on that. Our advocates that have the ears of politicians hear the same thing over and over. “All of you [autism advocates] need to come to an agreement on your own and come back to us when you do.”

There have been some great victories since the ADA was passed 27 years ago, including updates to the Individuals with Disabilities Education Act (IDEA), the Achieving a Better Life Experience (ABLE) Act, and Medicaid expansion. But there’s so much more. In my opinion, the CDC’s 1 in 68 number makes an even bigger impact when you realize that is one and a half percent of the population, or more than 5 million people in the United States living with autism.

What’s more important to you? The vaccine vs. genetics argument or ensuring services are available if and when you need them? The person-first vs. identity-first argument, or ensuring that you have basic human rights to live in and contribute to the community in a way that is meaningful to you?

To paraphrase what John Elder Robison said today: to the adults that are very angry about what you went through when we didn’t know better, can you find a way to forgive and channel that passion into finding ways to help yourself and your tribe going forward?

To the parents who are angry about the struggles their child goes thru daily, can you shift that warrior mom and dad devotion to fighting for supports and services to make your child’s life the best it can possibly be?

It’s time to focus on quality of life. Advocate for services, employment, housing, and equal treatment. Those are the things that make happiness. Those are the things that matter.

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Carly Fulgham is a Board member for the Art of Autism nonprofit. She is the Autism Society Ventura County’s first board president with an autism diagnosis. She is a founding member of the Autism Society of America’s Public Policy and Advocacy Committee and was appointed this summer to the Autism Society of America’s Panel of People on the Spectrum of Autism Advisors. Carly is a technology project lead for national bank and an active volunteer with a local autism organization. She is married to a neurotypical man and is an adult on the autism spectrum. Carly didn’t get her diagnosis until she was 28 years old and credits that moment with changing her life for the better.

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5 Comments

  • WoW! That cuts right to the root of so much that is going on in our world. Forgiveness is a revolutionary act in these times. Channeling our passions toward what we desire rather than what we fear is the key! This post should be amplified by all who read it!

  • I love this article and also the one linked to early on in this one. I share similar sentiments!

  • Hear, hear…damn well stated!

  • How do you let go of the anger? After you were diagnosed, how long did it take you?

    What about when your world still expects you to behave like a neurotypical, without accommodations, because you managed to “pass” for six decades, albeit as an odd and difficult family member and colleague? What if you’re spending all your energy on that, and only your anger fuels you to continue to endure?

  • Dena says:

    I know it wasn’t intended but this article separates parents from autistics which is divisive. The reality is, in both (as you soon will be). Secondly, as a parent, I stopped beings angry long ago. Life is too short and the battles with systems are all consuming. As far as letting go of anger, anger isn’t what is problematic. With some work, I have learned that anger is completely unproductive and what’s in the past can stay there. Toxic people from my past and currently around in life need not be there. I cut them out. What’s exhausting is simply managing day to day Life in a society that isn’t equipped for us. And thats where I draw my passion. There, and from the very people who get it that I adore.

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