The nightmare ends the same way every time: I drive up on my house and see police cars with lights on. Policemen with guns drawn. I see a young man in a red hoodie lying face down. Bleeding. Shot. I approach the person on the ground ― cops yell to stop, but I push past them. I roll him over and pull off the hood... and it’s RJ, my teenaged son with autism.
Parents of a child on the autism spectrum have similar dreams. And nightmares.
Since my RJ was was diagnosed with autism in 2000 at age 3, our journey on the “autism express,” as we call it, has been filled with high-highs, low-lows and countless small wins.
On diagnosis day, or “the Never Day,” a pediatrician rattled off an exhaustive, hope-starved laundry list of things he would “never” do: develop language, attend a mainstream school, have meaningful friendships, play team sports, drive, self-advocate, live on his own or say “I love you” unprompted. It was a devastating and suffocating day.
When RJ was a toddler through elementary school, I hovered over him like a relentless momma bear trying to keep him safe and understood. He had very little language until he was almost 10, so I was always on alert because he couldn’t articulate what happened to him when I was not around.
Eventually, he developed language, thank God. But he was still so misunderstood by the world around him. I was there to navigate that world. I was a “snow plow mom,” meaning I just plowed away all of RJ’s life obstacles. (Autism moms, I often like to half-joke, can be gangsta! We are our kids’ most loyal and ferocious advocates, so we have to be thick-skinned and often blunt.)
Our family ― or, Team RJ ― has fought diligently to help him overcome obstacles and check many of those “nevers” off of that list! I get weepy when I think about how far he has come. He speaks, has some friends, got a job and now he is actually driving! He got his license at 19 after being demoralized by failing the test several times. But, when I tell you this kid wanted to drive so badly, I am not even exaggerating one bit. He kept proclaiming, “That doctor said I would never drive. So, I have to make her wrong, Mom. She was wrong about a lot of things, right?”
RJ is amazing behind the wheel. He is relaxed and focused and determined. His fantastic brain came equipped with a built in GPS. RJ driving is a huge, huge win.
All his life, we have been preparing RJ to live independently, to turn him over to the world. Now I am petrified to do just that.
What happens when he gets pulled over by police? Will he get nervous or scared? Will he process the officer’s cues properly? If not, will the officer not see my sweet, special son, but instead perceive him as a threat or a “bad dude”? Has the officer ever been around someone with autism? Will he mistake RJ’s quirkiness or difficulty making eye-contact for non-compliance? RJ loves to wear his hoodies ― sensorily, he loves the way the hoods feel on his head. Will that cause an officer to stereotype him? RJ stims. (That is short for self-stimulating.) It can include flapping and tics and sudden movements, which petrify me for him when I imagine him one-on-one with a cop. Will the officer know what “stimming” is?
Earlier this month would have been the 22nd birthday of Trayvon Martin, a young man who was minding his own business walking home from the store when his fate was sealed by the blatant racial profiling of an overzealous neighborhood watchman who we came to know as George Zimmerman.
For myself ― a mom of three sons ― and for practically every other mother of a black boy, Trayvon’s senseless murder and the ensuing vindication of Zimmerman haunts us in every way, literally every day. It told us our sons’ lives did not matter. Though Zimmerman was not a cop, there have been entirely too many incidents of unarmed black men being shot and often killed by police.
So we have that obligatory “talk” with all three of our boys about what to do when you encounter law enforcement.
But, RJ’s autism makes him unique, and, in my mind, makes him especially vulnerable to a bad outcome.
“All his life, we have been preparing RJ to live independently, to turn him over to the world. Now I am petrified to do just that.”
I knew for my mommy peace of mind, we had to drill him on how to comply and hopefully avoid every mom’s nightmare. I also knew I had to advocate for him. So, I took him to our local police station and introduced him around. I told them, “You may see him walking up and down Ventura Boulevard. He likes to wear his hoodies and listen to his headphones. He loves to walk to local restaurants and eat by himself. Sometimes he talks to himself. If you see him say ‘Hi, RJ!’” After that visit, I was feeling pretty positive about RJ moving freely with autism in our community.
Then, this past summer, a tragic shooting of an unarmed autism therapist shook me to my core. In North Miami, Charles Kinsey was trying to deescalate an incident where the young man with autism whom he cared for left his group home in a moment of distress and sat in the middle of the street with a toy truck in his hand. The police were called, and they surrounded both men with guns as Mr. Kinsey desperately tried to shout to officers ― with hands held high in full compliance ― that the young man had autism and was unarmed. Yet, inexplicably, Mr. Kinsey was shot anyway. It was all caught on video and my three sons played it for me. RJ said, “I thought you said if we complied, we would not get shot, Mom.” I was at a total and complete loss for words.
I felt helpless but motivated to try to do anything to prevent something so awful from happening again. The first thing I did was reach out to Mr. Kinsey through his lawyer, Hilton Napoleon, II. I invited them to Los Angeles to take part in a panel to try and come up with solutions and discuss implementing autism training in law enforcement. We would document this on our docuseries, “For Peete’s Sake.”
I have tremendous respect for police officers. I remember going on a ride-along with LAPD’s 77th precinct in preparation for my role as Officer Judy Hoffs on 21 Jump Street in 1986. I was 20 years old. I saw so much that night ― everything from domestic violence to armed robberies to a hit-and-run death of a toddler ― and it really made me realize firsthand how difficult, dangerous and nuanced this job was. So, I invited some former LAPD officers to be on the townhall panel with Mr. Kinsey, myself and other autism advocates and activists.
My goal was to find common-ground solutions. I wanted to explore every option to try to connect the autism community and the law enforcement community. With autism prevalence at 1 in 68 and growing, surely police will encounter people with autism on the beat. And surely there are autism families within the police force.
Our townhall was everything I wanted it to be. We listened to each other and kept our emotions in check with a common goal of developing understanding and awareness. We all agreed that the more familiarity and relationships cops had inside the areas they work, the more invested and less fearful they will be. If communities could establish a mutually earned respect for one another, everyone would benefit. We acknowledged that we need to teach our kids “how” to show respect for authority and law enforcement, and the importance of following basic commands. We also agreed that if law enforcement made an effort to show more consistent accountability towards the communities it serves, that would go a very long way. The cop who shot Mr. Kinsey has not been held accountable in any meaningful way, and to this day, Mr. Kinsey has never even received any sort of apology for the shooting. This creates more mistrust and, in my opinion, make communities less safe for police as well.
But most importantly, the officers on the panel admitted they had never had any autism training and could benefit from knowing what autism looks like in the community.
If the officers surrounding Mr. Kinsey and his client with autism had some training, they might have understood and recognized that the young man’s apparent disconnection with all the intensity going on around him was due to autism. Maybe that would have changed the moment. Maybe no shots would have been fired and instead the officers might have helped Mr. Kinsey escort the young autistic man safely back to his group home.
After the townhall, I felt infused with a renewed energy to continue this dialogue on a national level. I want to take this forum on the road, into major American cities and attempt to implement autism training programs in police departments everywhere. I also want to explore the possibilities of the DMV implementing autism diagnosis notification on drivers’ licenses.
I will never stop trying to prepare RJ for the world, but the world needs preparation for young people like RJ as well.
Holly Robinson Peete is the author of Same But Different: Teen Life On the Autism Express & My Brother Charlie. She and her family appear on the OWN docuseries “For Peete’s Sake,” returning Feb. 18.
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