A couple days ago, I wrote to you to tell you about my son, Max, and how he was killed in a prone restraint at his school just over two years ago. It was hard to write, and I was not sure that you would even see it. In my letter, I told you that I had plans to use my pain to try and make sure that nothing like what happened to my beautiful boy would ever happen to another Autistic child, and that perhaps that letter was the first step.
A few hours later, you announced on Twitter that you were not only removing the restraint scenes from future printings, but you were putting out a warning at the beginning and end to consult Autistic occupational therapists (OTs) about safer ways to provide proprioceptive, deep pressure sensory feedback to help Autistic people come out of meltdowns safely.
I just wanted to take a moment to thank you for responding to messages like the one I sent about Max. I was touched that you not only took the time to read about my fierce and silly ghost child, but actually made a change that is likely to prevent deaths of other Autistic kids.
I wrote to you that the reason that the scene in the movie was so dangerous, even if it looked very different from what happened to my son, was that it normalized something that so many people do because it is kind of an instinct to want to stop someone who seems like they need help or are out of control. But, even a loving family member doing a restraint can have devastating— or even fatal— consequences.
Then, I asked you if you could remove the restraint scenes from your movie. I knew that was a big ask, and I didn’t really expect that it would be heard. You see, I spent Max’s entire life begging people to listen, to care about him, to act like he mattered. Those pleas mostly fell on closed ears, obviously with tragic results. You listened, Sia. It is so very difficult to listen, and harder yet to change one’s mind based on new information. You have to be brave to listen.
The simple act of listening puts you leagues ahead of the vast majority of the many professionals we personally dealt with during Max’s short stay on this earth. Thank you for hearing him. He would be so f#cking chuffed that a famous singer even knew his name, let alone changed her movie because of him.
One thing you mentioned in your announcement is that you were listening to the wrong people. This is very important, because most people don’t listen to Autistic people– because they don’t even know we are out here.
I know that I was just one of many people who asked you to remove the restraint scenes, but your tweets made a reference that let me know that you had read our letter, too.
I want to take this opportunity to ask other people to also listen to Autistic people and to normalize changing their minds.
If people were listening to the right sources, to Autistic people, then Max’s death and other deaths could have been prevented. I’m thanking you publicly because I want others to listen to Autistic people, too. A lot of pain can be prevented if they do.
I want to #NormalizeChangingYourMind. That is what the name of this organization, NeuroClastic, means. We all have to work hard and be brave to change our minds.
You might be wondering what Bad Guy Pants are. I’ll let Max tell you.
I hope that others will follow suit and change their minds. They will only get there by listening to the Autistic community and our allies who are working with us. Right now, I know that Communication First, ASAN, NeuroClastic, International Coalition Against Restraint and Seclusion, Alliance Against Seclusion and Restraint, International Association of Spelling to Communicate, Reach Every Voice, and so many other individuals and organizations are already providing guidance and information and preparing wonderful materials to help others better understand Autistic people.
I hope you will continue your journey of changing your mind, and that everyone else will, too. It is a long process that is never finished, and no one is ever arrived. Autistic people have to be the authors of their own narratives. Autistic people deserve better than what the world gives them.
Autistic people have to be heard. I hope you will continue to make amends to the Autistic community and to use your platform to help us ensure the right people are consulted in the future.
Dangerous restraints have to be banned. Compliance should not be a value we teach children. We need to embrace #GoodTrouble.
It is a matter of life or death.