Eradicate Ableism, Revisited: An Open Letter to Families of Autistic People

Content warning: ableism, filicide.

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“When the first thing the parent of a child with a disability hears, over and over again, is ‘I’m sorry’; when we blame disabled children for divorce or compare caregiving to serving in combat; when we assume that a disabled person is a burden …  These ideas have body counts.” Julia Bascom, Autistic Self-Advocacy Network

In November 2018, I wrote a blog post about disability filicide-the murder or attempted murder of disabled people by family caregivers. I described a widely-publicized case of attempted filicide, the Stapleton case, and focused on the warning signs that preceded the crime, as a way of trying to predict and prevent such crimes from occurring in the future. In this case, a mother blogged about her autistic teen daughter and her frequent aggressive outbursts, before attempting to kill her through carbon monoxide poisoning.

Well….My post has gone viral and received more than 3,500 views-and several comments. On this week’s post, I want to address a few comments I received that made me think harder about what we need to do to prevent filicide.

I received a few comments from people stating that they didn’t condone the attempted killing, but that they understood where the perpetrator was coming from. They then elaborated on the hardships of parenting an autistic person who behaves aggressively, stated confidently that ableism was not a factor, and pleaded for more compassion for caregivers.

Firstly, I am glad to hear that my readers don’t condone murder. We agree that harming a disabled person is no less reprehensible than harming a non-disabled person. From this point of agreement, we can have a conversation.

Secondly, caregiver burnout is certainly real. Family caregivers are human, and certainly deserve compassion. Anyone who feels like they understand the desire to harm their child, even a little bit, must be in a dark place. And supports for autistic people and their families are absolutely flawed and in need of reform. But, providing more support won’t be enough to stop filicides. The Stapletons were approved for 24-hour in-home care days before Kelli’s crime. In other filicide cases, like the killing of George Hodgins and Alex Spourdalakis, perpetrators turned down offers of help shortly before their crimes. So, offering more services isn’t enough.

Thirdly, a commenter wrote: “If you haven’t experienced autism, stop rejecting those you don’t understand and learn about what it’s like.” The commenter then suggested volunteering at a music therapy place, to “see how exhausting just 8 hours a day for a month is.”

A non-autistic parent of autistic children may know a lot about what it’s like *to care for an autistic person* but they haven’t “experienced autism.”

A non-autistic parent, brother, sister, daughter, son, spouse, or other relative of autistic people hasn’t experienced autism. A non-autistic program director, support worker, or volunteer serving autistic people hasn’t experienced autism either.

The only people who have ever experienced autism are autistic people.

I will repeat that. The only people who have experienced autism, who “know what it’s like,” are autistic people. They are the real experts here. They are best equipped to help caregivers troubleshoot challenges.

I haven’t experienced autism. When I started Disability Wisdom, I wanted to learn to be the best ally possible to those with disabilities different from my own. So, I started reading blogs written by autistic writers who generously shared their experiences, including their traumas and vulnerable moments.

One of the biggest lessons I learned is that aggression is not an inherent autistic trait. When an autistic person acts aggressively, just like when a non-autistic does, they are doing it because something is wrong. Autistic people may get triggered by different things than neurotypicals, but the principle is the same. Aggression is a “fight” response to something. It may take time to figure out what that “something” is and how to fix the problem. The trigger(s) may not be anybody’s fault. But when caregivers listen to what autistics are saying (verbally or otherwise) about their triggers, when care is taken to remove triggers and de-escalate situations, aggression and other “challenging behavior” can be reduced, making life better for everyone involved.

“Something we very strongly recommend, if you are looking for further guidance or input, is to find an autistic adult or mentor local to you, who can meet you and your child, observe their environment and interactions, and give feedback on what kinds of changes or interventions might be helpful.” From We Are Like Your Child, linked below.

But parents are still calling their autistic kids “violent” to strangers. Parents like Kelli are writing blogs about how their kids are in a “hard to love club.” Parents are publishing books like I Wish My Kids Had Cancer, promoting harmful chelation treatments for autism, or Autism Uncensored, where a mother boasted about wrestling her terrified young son into a noisy Elmo show in the name of “therapy.” As long as contempt for disabled people is given a voice, we are going to keep seeing filicides. This is what I mean when I talk about ableism, and when I say that our lives depend on eradicating ableism.

I also follow a couple of parent blogs. Two mothers of autistic children, Beth Ryan and Jess, give me hope. These mothers both have kids with co-occurring disabilities alongside autism. I have seen their blogs evolve over time. Both mothers regularly read and signal-boost the words of autistics. They both admit when they say things that are unintentionally hurtful. And most of all, they are both unapologetically, shamelessly in love with their kids. I am in awe of the love that spills through my earbuds when I read their blogs with my screen reader. Both these moms have hard days. They don’t deny that. But neither of them would ever dream of harming their children because they love their children so much.

“It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.” Maxfield Sparrow, Transmasculine Autistic author

Caregivers, I know you don’t have a ton of free time. But each of you had enough time to read my post and comment on it. One of you asked me to “help educate and encourage families of people with disabilities in their struggles and daily challenges.” So, I’ve carefully compiled the links below. I urge you to take five minutes and read at least one of these pages. Resources created by autistic people, as well as resources shared by Beth Ryan and Jess. Practical and philosophical advice that is time-tested to bring peace back into your home. If these pages speak to you, share them with your networks. Let’s work together to find solutions, build acceptance, and save lives.

Emergency Information for Parents and Guardians

A Checklist for Identifying Sources of Aggression

Autistic Insights on Meltdowns, Aggression, and Self-Injury

From Beth Ryan, on avoiding caregiver burnout

From Jess, on building trust and being present

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