TEDxMileHigh 2021

Read The Script:

Let me tell you what happens when your child receives a diagnosis of Autism Spectrum Disorder. After months of appointments and testing, you are ready to “get them help.”  You join all the facebook groups, you buy the books, you go to the parent meetings. Every person recommends a different therapy, a different diet, speech therapy, equine therapy, therapeutic Minecraft, Lego social skills, sensory TaeKwonDo. And your head is spinning. You are also told there is a “developmental window” and that if you don’t move quickly it’s going to slam shut and there will be no more development. Ever. And in your mind lives a constant fear-will my child have a good life?

It’s no wonder parents are overwhelmed. And so, Autism parents-you will probably find this talk while frantically googling “Autism interventions” late one night trying to figure out which one of the 37 recommendations you have been given is what is actually going to help your child.

And lucky for you, this isn’t a typical Autism talk.

A typical autism talk starts with me opening with a series of statistics: How 1 in 68 kids have autism. How many millions of dollars Autism “costs” families and taxpayers. How high the divorce rate is among parents of Autistic children. The typical Autism talk is meant to terrify you. Instead, I’m going to offer another perspective- Autism isn’t that scary, but your fear is being used to make a lot of people very wealthy.

My daughter was diagnosed with autism when she was 2, and after sitting through a few evals with her nodding my head along and thinking “I do that!” “I do that too!” I was diagnosed with Autism myself in my 30s. Professionally, I was an elementary special education teacher for six years until I left to pursue my PhD in Education in 2016. Oh yeah, and my dissertation is on the history of Autism interventions. So, I guess you could say I know a little bit about Autism. And I am going to tell you what I see – in my personal life at home, at school, and now with the families I help:

I see a lot of children missing their childhoods. I see a lot of stressed out parents, second mortgaging their homes to pay for yet another therapy. And I see their relationships with their children deteriorate in the process.

THIS is not a natural consequence of parenting an Autistic child.

In 1990s, the estimated US total lifetime cost of Autism services was 1.2 billion dollars. In 2000s that increased to 2.1 trillion dollars a year, and then in 2010s that number nearly doubled again to 4 trillion dollars a year.

You’d expect that with this type of spending we would see relative increases in employment, and educational attainment for children & adults with Autism. And yet, only 1/3 of Autistic youth attend college, just over half are employed in the first 6 years after high school. And only 19% of Autistic young adults live outside of their parents’ home, the lowest rate of independent living of any disability group.

So spending is increasing but Autistic people are not reaping the benefits. So, who is?

The Autism Industrial Complex.

You might be most familiar with this term when used to describe the military industrial complex which works like this: Weapons manufacturers and military contractors are in the business of war. The public fears for it’s national security. Lobbyists and media organizations exacerbate that xenophobic fears. Politicans pass more militant foreign policy, which means more war, which means more profit for wartime industries, and the cycle continues. In the Autism Industrial complex-a concept I explored with my colleague Alicia Broderick in a recent publication-the business is Autism services and interventions. And the social system it runs on is also built on fear. Specifically-parental fear. The more scared YOU are of autism, the more money you’re going to spend to try to “fix” it.

While Autism has only been a labeled condition for about 80 years, it didn’t take long for marketers to sell miracle “treatments” of all varieties to parents. To make sense of it, let’s look at the most prevalent Autism Treatment-Applied Behavior Analysis. ABA is the only therapy for Autism covered by insurance in the U.S. and something that most autistic children will receive in their lifetimes. When my daughter was diagnosed, I was handed a script for ABA services that same day, like most parents. ABA was popularized as a “miracle cure” for Autism by Ivar Lovaas in the 1960s. His methods were extreme. He and his staff used physical punishments like striking children and electroshock for any behavior they considered deviant.

From its beginnings as a field, Applied Behavior Analysis has been strategic about its economic growth. And Autism has been their bread and butter. Autism Speaks and other organizations like TACA (Talk About Curing Autism) or DAN (Defeat Autism Now) all leveraged the idea that Autism is a kidnapper, a thief, that robs parents of their children. This message has made for many successful fundraising campaigns, and the market for Autism intervention grew to meet this new demand. And it’s made a LOT of people rich.

But, as you can probably guess, ABA is also the most controversial therapy with Autistic activists. They call themselves ABA “survivors” after enduring years & years therapy who’s ultimate goal is to make them appear LESS autistic to the neurotypical world.  It’s also been described as “Autistic conversion therapy” because of its historical ties to Gay Conversion Therapy.  And just like gay conversion therapy, no one is any less Autistic (or gay) at the end of it.

Survivors recount being forced to make eye contact with adults or being physically restrained to limit hand flapping or stimming. Plus, there’s an emotional cost to being told your whole life that “progress” means masking your Autism better, hiding it from neurotypical people, no matter what that does to you inside. Imagine how exhausting it is to live every moment of your life pretending to be someone else, faking everything you do in order to make other people more comfortable around you. What a horrible message we’re sending to Autistic kids and adults.

And this isn’t a thing of the past. I do consulting in schools and have walked into schools & found students being isolated or restrained face down on the ground. If this happened to neurotypical children in school, we’d call it child abuse. Those teachers would be barred from teaching forever. Principles & school administrators would lose their jobs. It would make the national news. And yet, it’s happening to Autistic kids every day, around the country, as we speak.

So what am I suggesting? First let me tell you what I am not suggesting-I am not suggesting that what meager funding is allocated to autism services at the national level or by insurance companies be rescinded.  Or that Autistic children don’t deserve quality services to meet their physical, social, or academic needs. Autism is a disability and many autistic kids do need and benefit from some forms of therapy.

Both as parents & as a culture, we need to stop acting like our goal is to make an Autistic person as neurotypical-passing as possible. Autistic kids always grow up to be Autistic adults, period.

And let me assure you, Autism isn’t the evil child stealer that we think it is. The worst case scenario for your child isn’t that they’ll grow up to be Autistic – it’s that they’ll have a horrible life. The Autism industrial complex will make you believe that those two things are the one in the same, but it’s not true.

It IS possible to have a great life as an autistic person. Instead of worrying how “normal” your child will grow up to be, or whether they’ll “pass” as neurotypical, parents of autistic children should start with the end goal in mind. What would a GREAT life look like as an autistic person? Reverse engineer with the therapies you need to get there. If your child struggles with X, maybe they need Y. But the solution isn’t to make your child non-autistic. They never will be. 

In the last year, I’ve been using my AuTeach TikTok account to educate parents on how to find therapy and services that truly help their children thrive. To be their best, most comfortable Autistic selves.

With this perspective, I see parents breathing a sigh of relief and canceling their exhausted preschoolers’ third therapy appointment of the day to take a walk outside and laugh and play together. I see parents getting on their kids’ level and learning about their world. And I see Autistic kids thriving.

No one benefits from your fear of Autism except the people who want to sell you the antidote. The REAL antidote is accepting your Autistic child for who they are & then getting them the support they need. Schools can work to create more inclusive, accepting environments for Autistic students. Governments can enact policies that benefit Autistic people across the lifespan-not just as children. We can all work to unlearn ableist, limiting beliefs about Autism. You don’t need to pay for hope when it’s sitting right in front of you.

Watch The Video: