I don’t want to lose hope.

Victor Perez should still be alive.

A little over a week ago, an autistic teenager named Victor Perez was fatally shot by police officers who were responding after a neighbor saw him holding a knife and presumed he was intoxicated. Victor was nonspeaking and also lived with cerebral palsy. He wasn’t intoxicated, but walked with a gait that is common for individuals with cerebral palsy.

It’s reported his family was attempting to deescalate him when he was distressed. It’s reported that within seconds of their arrival, police fired multiple shots through a chain-link fence. It’s reported that no attempts to de-escalate were made by those officers. It’s reported that people were telling the police, no, no, stop. That they were crying out. It’s reported that Victor was in a crisis, perhaps an autistic meltdown. That he needed care. It’s reported that 20 shots were fired.

It’s reported that days after removing nine bullets from his body and amputating his leg, Victor was declared brain dead and taken off life support.

I have been reading about this and trying to process it, and I haven’t know what to say. I am beyond heartbroken for Victor’s family. They are living a nightmare.

Photo by Chris Bair on Unsplash

I’ve seen so much grief and anger and fear. I’ve seen people trying to hold it together while parenting our own kids through meltdowns and shutdowns and systems that don’t understand them. A little more than a year ago, I wrote about Ryan Gainer, who lost his life in a painfully similar situation.

I’ve written and spoken many times about how high-stress situations can bring about intense dysregulation, especially for autistic individuals. I don’t claim to know all the details of Victor’s autism diagnosis. But I do know what it’s like to be in the middle of a meltdown, or trying to support someone through one. I know firsthand that it can feel like it might never end. I know the fear that someone might get hurt, and I know how terrifying it is to realize that calling for help might actually make it worse.

Especially as my children get older, I’ve worried that if someone else stepped in, the situation could spiral fast. We’ve already had experiences where someone has tried to forcibly restrain my child, and I’ve imagined what could happen if a meltdown looked threatening to the wrong person. I’ve grieved again and again that families like mine even have to think about these things.

Let me be very clear: Autistic meltdowns are not malicious. They are not manipulation or defiance. They are involuntary nervous system responses.

When my children are dysregulated, we do our best to back off. One of my friends has a rule I love, a rule that in her house the least regulated nervous system stays put and everyone else gives them space. We keep everyone safe, yes, but we also prioritize giving space. We express love without pushing. We wait for the wave to pass. We rebuild connection afterward.

That’s not what Victor received.

But this doesn’t start or end with Victor. Yesterday, the National Autism Association shared that in the past week, in addition to Victor’s death, five autistic children have died after wandering from safe settings. Another autistic young man, lost and disoriented, was shot in the back by two men who jumped him. And a vulnerable autistic man is still missing in Washington State.

This is not rare. This is not isolated. This is a crisis. And we should be extremely concerned that the systems meant to protect us aren’t prepared to respond.

Less than half of U.S. states require law enforcement training on intellectual and developmental disabilities. As far as I can tell, there’s no national standard for what this training includes or how it’s implemented, how many hours are required, and what content is emphasized.

Are they are focused on recognizing autism in children? Do they know understand what it may look like in women and girls? Teens? Adults? People of color? Multiply disabled individuals? To me, this indicates a glaring and terrifying gap: families who are often overtaxed, overburdened, and exhausted are faced with seeking help from someone who may not understand their situation (and may not have the capacity to understand), or they must handle the crisis alone.

I’m honestly not convinced more training is the answer. But I’ve said before that I don’t know all the answers. That I believe these situations are complex—training, funding, mental health, legislation, race, disability, lived experience, bias, exhaustion, fear. All of it.

Photo by Jake Weirick on Unsplash

I also expect there are people reading this who are going to wonder if my political views are shifting or read this as me trying to antagonize someone whose views are different than mine.

Friend, you’re missing my point.

Disability doesn’t care who you voted for. It doesn’t care who I voted for. It doesn’t discriminate by ethnicity, zip code, religion, or ideology. It shows up in every community, every political party, every neighborhood, AND it’s also true that there are specific communities that are disproportionately affected by the way their disabilities are ignored, undetected, and misunderstood.

Many of us (I would guess all of us) know and love someone with a disability. And if that is true, then we should all want to exist in a world that serves are supports our loved ones well. This includes how they’re represented and portrayed in the media, treated in hospitals and clinics, supported in classrooms and IEP meetings, accommodated on public transportation, considered and included in faith communities, and yes, cared for and understood in moments of crisis when emergency services are called. This is safety, belonging, and basic human dignity, AND we have to acknowledge that the way we accomplish ensuring this access is usually political.

So if you’re still with me: What happened to Victor Perez is a tragedy. It’s an indictment of a system that is broken.

A system that responds to disability with violence is a system that is not working. A system that criminalizes meltdowns or moments of distress is a system that is failing.

I am angry. I am grieving. But we cannot stop at sadness or outrage. We need our systems to reflect the compassion and care our communities deserve.

And for those of us who are Christian, let’s remember that Jesus never walked away from those in crisis. He moved toward them. He saw their humanity. He made space for their pain. He told the truth.

We’re called to do the same.