“When we leave the house, my son’s behavior challenges mean I have no idea what to expect from him, and his race means I have no idea what to expect from others.”

By Elna Moore Hall

A few years ago, I moved with my husband and children to a small suburb, known for its community safety, tree-lined streets, and stellar school system. I was excited about the move, our new house, and the great education resources I’d heard so much about. This move, for us, was a win. So as moving day approached, we busied ourselves with all the activities we knew were necessary for a successful transition: we packed boxes, transferred utilities, officially changed our address. And we took our youngest son to the town’s police headquarters.

My son has a severe form of autism. My son is Black.

Black families are a rarity in that suburb, and his father and I both instinctively knew what we needed those police officers to understand: that our pre-teen son who they may see in the community is a legal resident, not an intruder, a criminal or a threat, and they need to know his name and face. That he can’t explain those facts to an officer because he is nearly nonverbal and will not be able to answer them if questioned. That he has no understanding of his legal rights if stated to him. That he engages in behavior many people would consider odd, including sudden movements or running when he’s excited or overwhelmed. That they must not use force on him, draw weapons, or otherwise escalate violently with him if he can’t respond or behave in a way that they expect. And as homeowners and taxpayers in that city, we expect him to be treated with respect and dignity at all times.

Being the parent of a developmentally disabled person is exhausting, a 24/7 feeling of pushing a boulder uphill. Parents like me already navigate our children’s exceptional physical needs, unpredictable behavior, broken health care systems, and underfunded education and social services that hang together by a thread. Special needs parenting while Black adds an extra layer of fear that feels overwhelming. When we leave the house, my son’s behavior challenges mean I have no idea what to expect from him, and his race means I have no idea what to expect from others. I spend a lot of time thinking ahead for ways to avoid potential problems: which grocery store will have allies in case something happens? Which local park will have visitors who won’t treat him with suspicion? If he has a meltdown in public, would people see it as the behavior crisis that it is, or as Black man being violent? And who would help us? Sometimes it’s easier not to leave the house at all.

“Which grocery store will have allies in case something happens? Which local park will have visitors who won’t treat him with suspicion?”

It’s no secret that Black men are targets of cruel prejudice, biased law enforcement, and that the combination of racism, violence and a lack of police accountability have caused far too many to pay a price with their lives. But how do you deescalate a confrontation with police when you have limited verbal ability? How do you protect your own rights as a citizen when you don’t understand what they are? How do you stay calm and navigate a frightening situation when you already struggle with sensory overload, stranger anxiety, and might melt down if in panic? The final words of Elijah McClain, a Black man who died violently at the hands of police last year, still haunt me: “I’m just different. That’s all. I’m so sorry.” If a fully functioning Black man is already at risk of losing his life at the hands of police, how much more so is a cognitively disabled one? Police are increasingly being called to intervene in behavior crisis events, but in 2020, it’s still rare for officers to get any training on interacting with developmentally or intellectually disabled citizens, or in broader issues of behavioral health at all.

My son has grown since we moved to that community — he’s much bigger than me now. He is the physical size of an adult man, but still wants to watch Disney videos and build with Lego. He has no understanding of the ugliness in the world around him and how much it puts him at risk. He’s a child on the inside, but society doesn’t see him the same way. I look at him and think he’s beautiful, but on any given day, a resident or police officer may look at him and see a menacing threat. The consequences could be deadly. In a way, I’m grateful that he’s so unaware.

“I look at him and think he’s beautiful, but on any given day, a resident or police officer may look at him and see a menacing threat.”

What’s the solution? I’m not an expert in police reform, I’m the mother of a special needs young adult who happens to have brown skin and cannot advocate for himself. I feel sadness, fear and an overwhelming sense of protection for a child who sits inside a Black man’s body. But I do believe that the answer has to include dismantling racist systems, better education on disability and mental health for those who claim to protect us, and building a society where my son’s life is seen as having equal worth. Progress on each of these is urgent and so badly needed.

In the meantime, I’ll keep pushing the boulder uphill, and keeping my son close while I do it.

Elna Moore Hall, Ph.D. is an organizational psychologist who lives in the San Francisco Bay area, and is the parent of a teenager with autism.

For more information and support resources related to severe forms of autism, visit the National Council for Severe Autism’s website at ncsautism.org.

Photo by Trevor Hurlbut: https://www.flickr.com/photos/hurtre/4984977930/in/photostream/

National Council on Severe Autism pursues recognition, policy and solutions for individuals, families and caregivers affected by severe autism. NCSAutism.org

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store