I realize that this level of honesty is going to make some you angry with me. This is a risk I’m willing to take because the cost of silence is greater.
My thoughts on RFK Jr’s plan to assemble a list of autistic people are complex and difficult to put to words.
Many of my fellow advocates have been posting on social media to combat the thinking that autistic people cannot contribute to society. RFK Jr. spoke of autism as a blanket term and so we pushed back, speaking of our own experiences, and carefully curating phrases to remind everyone that autism is a spectrum disorder. Yet, in the comments, I see angry messages, many from angry parents of autistic people who are nonspeaking. They say, “speak for yourself” and remind us their kid isn’t like us. They seem to want a cure.
My first thought is – how selfish to steal space from autistic people who are trying to defend their rights as humans. These parents are speaking for themselves – their loss, their suffering – as in these cases their child cannot speak for himself. While many nonspeaking people have access to assistive technology through which they have learned to communicate, not all nonspeaking autistics get this opportunity. But if your child could speak for themself, would they ask for a cure? Is this aggression the parent speaks of the fault of autism? Or is the child frustrated with being misunderstood? Would the autistic person ask for a cure or would they ask to be loved?
As parents it is our duty to set aside our suffering and ask these questions. This doesn’t mean our suffering doesn’t matter; it just means our suffering is a different issue – a separate fight – a discourse with our community on finding support and reprieve. I am a parent and remember those days of feeling alone, isolated, and forgotten as I struggled to help my kid. But I found solace in a community I worked to build around my family.
However, when we are talking about autistic rights, it is autistic people that are privy to the floor. Those who are non-speaking were unable to participate for decades. It was speaking autistic people who kept them in the conversation, who pushed back on the “low IQ” and “incompetence” models. We were the ones who reminded the researchers, the educators, and the administrators to presume competence. We did not steal funding from your nonspeaking child.
Thanks to our efforts, and the amazing researchers and professionals who kept asking questions and taking action alongside us, assistive technology was built, laws were passed, and now non-speakers are joining us at the table. They have a voice, so ask them, do they wish to be cured? Ask them, what is their greatest need today that would give them ownership and autonomy over their own lives?
This autism list isn’t to help autistic people. It’s to help NT people who feel that autistic people just hope and wish to be like them. It’s to ease the fear of people “catching” autism from the water they drink, or the preservatives in their food.
Now we just ignore all of those scientists, dismiss them as corrupt, and replace them with other people who will discover something off of a list? Won’t they also be scientists and if so, why are they more trustworthy than the 8 million other scientists who are giving us warnings about how we as humans can protect our habitat?
I ask you who don’t have autism, is your life free of suffering?
If the goal of a cure is to free us from our suffering, you’ve promised the impossible. Let’s say a cure could ease your burden today, as a caretaker, but then what? Do we with autism just wakeup one day the person you pictured us to be before we were born? Do we walk the walk and talk the talk of the person in our family who you thought we resembled as infants?
The biggest issue with the cure mentality is that it is magical thinking run amok. That magical thinking has people believing that invading our privacy to accumulate a list will somehow tell you something we don’t already know. After years of people like us being institutionalized, made sterile, or euthanized, you want us to to believe this information will only be used in good faith, and lead us to the day when your child wakes up speaking, and happy they’re no longer autistic?
So what should we do?
Focus on making the world a clean, healthy place to live where all people are equal and free.
Are there problems with our air, our food quality, and our environment? Yes. Flint Michigan, Camp Lejeune, and the Talc baby powder lawsuit are just a few of many examples of the dangers of toxins, both on our brains and our bodies, but we already knew that. We have decades of scientific research about the harms of toxins in our food, air, water, and daily products. Yet we ignore that data so we can scroll social media on our smartphones, in our gas powered cars, as we drive home from the big box market that sells us cheap plastics.
We have farmers who have run their land for generations telling us that the agri industry – the big corporations that make money off the farmers – is forcing them to destroy centuries of healthy farming with chemicals and overcrowding animals so they can make more food, faster. But we ignore them so we can have a watermelon in January in Montana, and a family pack of plastic wrapped chicken on a styrofoam platter without having to visit a farmers market.
We have scientists warning us that our climate is changing because we pollute, and waste, and abuse our earth. But we ignore that because a 120 pack of ziplock bags on auto ship from Amazon means we don’t have to wash storage containers. Just use and throw away.
So I ask you, why is an autism cure your emergency?
I’m sorry if your autistic kid is acting out. I’m sorry if you are angry. But that stone you just threw at me? I can’t even feel it anymore. It just rests there at my feet with the hundreds of stones thrown by others before you. There may be autistic people who wish they weren’t autistic, and that is totally up to them. I understand the pursuit of knowledge, and the desire to learn the cause of autism. Maybe we will learn something, maybe it will only lead us to more questions. While I do not seek a cure, I can’t and won’t argue with autistic people who want these questions answered. I can tell you that as parents, we have to focus on creating a world that will support our children after we are gone. I can tell you, unequivocally, that a cure is worthless if all you are going to leave behind is a poisoned, uninhabitable earth. We have plenty we can control and change to make life for our kids better, and it starts by cleaning up this mess we made in the name of convenience and profit.
I will continue to advocate for our autonomy, our liberty. Those who want to cure me, go take care of the rod in your own eye and leave my speck alone.
