My son, Matthew Rushin, is Black and autistic. In January of 2019, when he was 20 years old, he was sentenced to 50 years for a nonfatal car accident. You can learn more about that by clicking here.
Every time I make a post about Matthew, there are comments from parents who respond that what happened to my family and my son is their worst nightmare. Every day I get messages in my inbox on social media from parents telling me how scared they are for their child’s future.
I was not afraid that this would happen, but I wish I had been more afraid. I never dreamed that this would happen. The fact that you are afraid is great, because it means that you are aware that you need to be prepared. You still have time to make changes before the worst happens!
This is my advice for you, so that hopefully you won’t have to suffer being unprepared.
I know all autistic people are different. Much of this advice is for parents of autistic people who can speak and who can mask, especially if your kids are Black like Elijah McClain, Osime Brown, Neli Latson, and Matthew. I have more to learn about nonspeaking autistics, and I will keep learning when Matthew is home.
As autistic kids get older, they learn how to mask away their autistic traits. Masking is when they learn to perform like they are non-autistic because that is what they think they are supposed to do. They think something is wrong with them because that’s how autism is discussed.
Matthew wrote an essay in high school about how he was “overcoming his Asperger’s (autism),” and at the time, I thought it was great that he felt that way. We both learned through the deficit model, that being autistic is having something “wrong” with you.
How we talk about autism has to change. Framing differences so negatively will impact how kids see themselves, how parents see their kids, how teachers see their students, and later how employers see their workers, how spouses see their partners, and how police see community members.
Ableism is not even a concept that I was aware of, but it’s not all that different from those heartbreaking experiments where Black children are shown a white doll and a Black doll, and they are asked which doll is good? Which one is beautiful? Which one is smart? The Black kids pick the white doll.
It shows how all the million subtle messages in society tell Black kids they are less-than. Racism and ableism aren’t the same, but they are both deadly. Society sends the message that autistic people are “less than,” and it’s socially acceptable to send that message.
I did not really, truly learn about autism until a year and a half after the accident, when NeuroClastic and the autistic community started breaking down Matthew’s case. I didn’t know what echolalia was. I didn’t know that more than 1/3 of autistic people have seizures. I didn’t know what stimming was. I didn’t know self-harm was common and that more than 80% of autistic people have self-harmed. I didn’t know what executive functioning was. I didn’t even know an autistic community existed.
I was reaching out and begging for help from organizations like Autism Speaks, not even realizing that they were the problem. They were why I really didn’t understand autistic people. These organizations were where I was getting my deficit model information. And I never heard anyone talk about being Black and autistic until interacting with the autistic community.
If I had been in contact with the autistic community before this happened, I would have been ready. Not just that, but I would have started with a giant community of fierce fighters who would have had my back and built Matthew’s defense.
My advice to you is to go out there and learn everything you can from the autistic community while you unlearn everything you thought you knew. If your child is able to mask, they can’t keep that mask up when they are distressed or exhausted or overwhelmed.
Someone will read their autistic traits as menacing or suspicious. It will help them to articulate and own that they are autistic so others can adjust their perception and not interpret things like fidgeting and lack of eye contact as a sign of guilt.
Masking is painful. Autistic people want to be themselves in the open. But right now, it’s not safe. We have to work together to change that before more tragedies happen.
Make sure you honor and acknowledge and appreciate what is autistic about your children, even if they are adults. Know about and love those differences. Talk about them and accommodate for them. Follow autistic people on social media. You can find them with the hashtag #ActuallyAutistic. If you have questions, you can hashtag #AskingAutistics.
Teach your kids, especially if you are Black or a person of color, that they need to be prepared to tell police that they are autistic and they require an advocate. Tell them not to say a word without their advocate.
Teach them to do their best to remain calm and to tell the officers that they are autistic, they communicate differently, and they have to have an advocate. If they prepare, mentally, for the situation in advance, they’ll be much less distressed if something ever happens where they’re confronted by law enforcement.
Tell them to tell the officers to call their advocate, and you be prepared to serve as their advocate. Prepare your whole family to be advocates, and some friends, too, if you have a good network. Autistic people are at risk by existing, and you can never have too much support if they need to be defended.
If your kids are in school, again, you need the autistic community. I went everywhere trying to get help with Matthew’s IEP. Nothing. Crickets. I had no help. The autistic community could have helped me with those battles, too.
Know that autistic people will always be autistic. Even if they come out of their shell and are more social. Even if they are working and in college. We have to stop seeing personal growth or personal achievement as “not autistic.” We can’t say any minorities who achieve are less like themselves and more like the majority because they achieve. That’s bigotry.
Even if people can’t see it, they are and always will be autistic. I think we are all pushed to believe that autism was something to overcome, to hope that they would lose their diagnosis, to be less broken or more normal. That’s a dangerous way to think about our kids or to ask them to think about themselves. It is asking them to hope they will become a different person with a different identity, and ignoring that the best parts of themselves are autistic, too.
Every single trait of every single autistic person is an autistic trait.
But “having autism” isn’t a thing. Being autistic is a thing, and it is a lifelong thing. It has challenges unique to being autistic, and it has gifts. It should be embraced. Autistic people need to be taught how to understand themselves, to know they’re not alone, to see other autistics explaining their experiences so they know how to advocate for themselves and to ask for the accommodations they need.
One of the most devastating days of this whole process was when we had been making such great progress, and things seemed to be– finally— moving forward with momentum. Then the prosecutor published a scathing letter to the Virginia governor asking him to not pardon Matthew, stating that Matthew, the most gentle soul ever, was a danger to the public at large and “his next victim.”
That really knocked the wind out of our sails. It was full of lies, but how can Black parents defend their Black autistic son against an ableist system? The prosecutor said that Matthew’s one instance of self harm was a suicide attempt, he treated echolalia like a confession, and he quoted half sentences with no context to paint a picture that was so removed from reality.
If you want to see how amazing the autistic community is, you can go look at the comments on Facebook under that letter. There are over 400 comments there in Matthew’s defense, and those people who came to explain and break it down and stand up against racism and ableism we’re autistic people. Even if they didn’t announce they were autistic, they were the people who have been fighting for Matthew behind the scenes.
I don’t even know how they knew about the post before I did. But I didn’t have to know how to defend Matthew or myself. The autistic community came through.
You learn to love how “blunt” and how dedicated autistic people are when they go to war against racism and ableism to save your son’s life. What you might have thought of as “rude” before becomes heroic when you’re being bullied and far too many people are too afraid to be “political” or impolite.
We need to platform autistic activists. We need to platform Black activists. Being Black or being autistic doesn’t mean that you automatically know all the traps and dangers of your community and how to fight them. Activists spend their lives learning about all the hardest things that are our worst nightmares, so that’s where to start. Activists tend to have answers specific to their marginalized community or know how to connect you to people who can help.
Follow your local Black Lives Matter chapter or other organizations for racial justice, even if you’re not Black. You can learn about your community’s issues, who to go to for help, issues in your local government, etc. I’ve been blessed to have a chapter, Black Lives Matter 757, that is dedicated to being an ally to autistic people and bringing Matthew home. Several people have been arrested for peacefully protesting for Matthew, but they still put themselves at risk to keep showing up.
You can also follow the hashtag #BlackAutisticLivesMatter.
Support other families whose autistic loved one has been a victim of injustice. Sign petitions. Write letters. Make calls. Go to rallies. Make social media posts. It really goes a long way to get these issues into the eyes of politicians.
If you have privilege, use that privilege to help. Help by using your platform to signal boost activists who spend their time deeply understating the issues, and more importantly, how to fix them. Ask if there is autistic representation and get autistic input before you design trainings or hand out materials or write legislation. Get Black input. Get Black autistic input.
Collaborate with other activist groups. It’s been really powerful watching the autistic activists from NeuroClastic working with Black Lives Matter 757 to demand civilian review boards (CRBs) with subpoena power.
Just last week, effective immediately, Virginia Beach announced that they would be instating CRBs. I was able to speak to the mayor and a group of community members to endorse this change, and the mayor expressed his support for Matthew. Activism works. Matthew would have been exonerated by a CRB.
A few hours of training in disability or mental health crisis is not going to prevent officers from being corrupt or ableist—especially if they are racist, too. Police trainings need to be informed by autistic activists and following protocol for working with autistic people has to be mandatory.
I used to do the autism walks and charity events with the puzzle pieces and the deficit model narrative. Matthew did, too. I didn’t realize I was supporting organizations that were not actually doing anything to help. They were a part of the problem. Marginalized people need to be the center of their own narratives.
In short, learn, learn, learn. When your life is peaceful, and you’re not in crisis, support the organizations that are doing work that might one day save your loved one’s life. Volunteer, read, share, learn, learn, learn.
And build your support network before an emergency happens. It’s true there is power in numbers.