I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve a Better World

by Meghan Ashburn

I still didn’t understand how he was so calm and positive about this stuff. He never downplayed the amount of support they needed, but he also didn’t seem alarmed. Looking back on this day, I realize he knew what I didn’t yet—that

my kids would develop in their own time. He also has an autistic son, who was just starting college at the time.

Our society puts doctors on a pedestal. But as Dr. Barbara Stroud points out, “Doctors are only as knowledgeable as their training. Medical school trains doctors to treat injuries, diseases, and illnesses. Child development, sensory input, motor differences, accessible technology—not so much”

Testing companies, mainly Pearson, and other monetarily interested parties aggressively lobby our government for the continuation and expansion of high-stakes testing (Simon 2015). The amount of money our education system throws into this testing “ecosystem”—pre-tests, post-tests, benchmark tests, website subscriptions, data companies—takes away real dollars from our schools’ budgets.

Real inclusion takes work. It takes intent. It takes investment. Making schools accessible to all children requires teacher training, more staff, restructuring school environments. As Jules says, parents have privilege, and we can use that privilege to make school environments more supportive for our children. Only when our schools are truly inclusive will we see that same type of inclusion in our communities.

Once autistic people age out of special education, there are very few services for adults. Autistic people, as a collective, are broke. We are broke-broke. We have faced the cliff of services, we have fallen off the cliff, we are often left with very little support. Occupational therapy? Good luck finding someone who will work with adults. Speech therapy? Nope, should have that figured out by now.

In order to create a continuation of services for your children, including housing options and fair labor practices, parent advocacy should always be led by, or at the very least be in collaboration with, disabled advocates. Disabled adults know the needs of disabled adults. Nondisabled parents have influence. By working together, we can get rid of this cliff of services. We’ll talk more about collaborative advocacy options in Chapter Fifteen.

Guardianship and conservatorship are often seen as the default action when a child becomes an adult. It’s easier to take away an autistic person’s rights via guardianship or conservatorship than it is to access any type of adult services. This, again, is a result of misguided advocacy.

Access to disability support typically requires that disabled people meet certain income limitations. There are income and asset limits, marriage penalties, and the constant threat that we are expected to be productive but we may not profit. Financial support programs like SSI (the Supplemental Security Income) claim that they want participants to try to find employment, yet they use any amount of success to cut off a person’s benefits, regardless of the sustainability of the disabled person’s labor.

In addition to being condemned to a lifetime of poverty, autistic people are often expected to volunteer in their communities or provide free labor. This type of exploitation is reframed as inclusion. We’re often invited to speak at events that our abled peers are paid to organize, present, and attend, under the guise of advocacy. Again, this is exploitation.

We must produce something, no matter what it is that we produce. If it takes a full shift to sort one box of mail, we may only get paid $10 for the full day. After all, our disability makes us less productive, thus our time is worth less. Worthless.

We need to work now to make sure our kids are prepared for the future, so they aren’t abandoned in an institution when we are no longer around to support them financially or otherwise.

Ninety percent of people with a developmental disability will be sexually abused in their lifetime. Forty-nine percent will be sexually abused ten or more times (OJP 1995). We don’t have statistics on the risk for developmentally disabled people of color, but we can only assume that the risk is higher.

Ethically, children should be educated and empowered to make decisions about consent. Children need to be taught about bodily autonomy, anatomy, boundaries, and consent. These things must be taught in an accessible and culturally responsive way. This isn’t happening. Instead, many of our autistic youth are being conditioned to be compliant, groomed to accept people violating our boundaries, and punished for saying “No.”

It often feels like autistic people are not allowed to love ourselves. And not even love—we aren’t allowed to accept ourselves or have pride in who we are. When an autistic person says something positive about themselves, or mentions autistic pride, soon thereafter, society will arrive to remind that person about the burden they have been their entire lives.

Due to the trauma and lack of meaningful support that autistic people experience, we are at an unacceptably high risk of suicide. When every day is a fight to just be seen as a human being, to be respected as an equal, the idea of not having to fight anymore can seem like a relief.

For some reason, the press coverage of these parent murderers doesn’t include statistics about filicide or provide information about prevention or resources for other parents. ASAN’s Anti-Filicide Toolkit (2022) should be included in every news segment or article, but I’ve rarely seen it shared outside of the disabled community.

In autistic spaces, autistic adults who aren’t parents may not understand the experience of parenting an autistic child. Yes, all autistic adults were autistic children at some point, and parents need to learn from autistic people—both parents and not-parents—about the autistic experience. Autistic parents of autistic children have multiple perspectives, which is a great reason for allistic parents to include us in discussions and learn from our experience.

Respect Goes Both Ways We can hear you when you’re talking about your child, because many of us are parents, too. The things you’re saying about your kid are the same things you’re saying about our kids, and about us. Choose to use language that is humanizing, whether you’re online, or advocating in your state capitol. We can have difficult conversations about hard things in a way that is respectful of the people we care about. Here are some examples of respectful language choices:

Disorder/Disease Disability/Neurotype Symptoms Traits Learning deficits Learning differences Not potty trained Incontinent Severe autism High support needs Profound autism Co-occurring conditions

Autism sucks My expectations weren’t met Disability (negative) Disability (neutral) These words don’t change reality. But they absolutely change our perceptions, how we react to situations, and how we approach our children. Using respectful language to talk about o...

Autism is a neurodevelopmental disability. A neurological classification if you will. It’s not a disease or an illness. There is no expiration date on the diagnosis. Your child is not going to be more or less autistic based on whether or not they started a specific therapy at a certain age. Don’t allow a profitable industry to push you into an action that you have not researched thoroughly. If the autistic community says something is harmful, listen and research. If the autistic community says something is helpful, listen and research.

We were reading the chapter titled “Fighting the Monster.” Silberman details the major players in the autism field, and how they steered the narrative throughout the past decades. I don’t want to spoil the plot, but some of those privileged white men pretty much faked their credentials and inserted themselves wherever they could as fancy experts. They framed the entire conversation around autism for their own financial gain. I’m detecting a pattern here.

We’re constantly updating our “100-ish” book list (Not an Autism Mom 2020) and our children’s book list. We recently developed a printable, one-page book list for professionals to place in their resource centers, waiting rooms, and informational packets (Not an Autism Mom 2021)—hopefully placed in front of that dreadful 100 Day Kit… Just a thought.

Here are a few simple scripts that non-autistics can use in everyday life when conversations about autistic people arise: • I’d like to hear from an autistic person on this. • Has anyone researched what the autistic community’s opinion is? • I read this article written by an autistic person who is also a professional in this field. This is an important perspective, why don’t we reference it? • I’ve learned from autistic people that the community mostly prefers a gold or rainbow infinity symbol. Blue puzzle pieces are controversial and cause distress for many autistic people.

know that the usual approach fits into the system better, but I’d like to try this other way, because the autistic community has been advocating to change that.

Leaders around Me edited by Edlyn Peña Ph.D. Typed Words Loud Voices edited by Amy Sequenzia and Elizabeth J. Grace The Edge of the Playground by Mikhaela Ackerman and Mary Lynn Ackerman Willis This Is Not About Me, a film featuring nonspeaking advocate Jordyn Zimmerman https://thisisnotaboutme.film

So if I’m sitting in a chair and talking to someone at a party, the only way to focus on our conversation is for everything else happening around us to disappear. I can’t focus on the entire picture happening around me, it’d be like trying to focus on a bunch of multicolored objects flying around at warp speed and trying to pick out the various colors splattered onto each one. If I focus too intently on even what’s going on in our corner, I can feel my clothes, the chair, voices start blending into one; if I look at their face it will warp and change. This is where stimming comes in, to disperse the attention evenly so I don’t get overwhelmed by one sensation.

Transitions are hard because shutting and opening a door, going into a different room, is to enter a different world. With a different temperature and different people and a different atmosphere. It can be instant calm, or instant dysregulation. The people here can look friendly, or like a threat.

So I’m gonna give you my personal reasoning for why I really don’t like when people film autistic kids or put things out there just because “they don’t understand anyway.” My life is a series of delayed processing. Things I didn’t respond to the first time hit me like a freight train a couple days, even weeks later; my thoughts are not linear.

I’m a bit of an idealist. I’m enthusiastic about coaxing the world to be a better place for everyone. I can’t accept the way the world is, because it’s such a messed-up place for so many people, for so many reasons. There are other people who subscribe to the idea that “the real world is not going to accommodate you, you’ll need to just deal with it.” I think that statement is completely false.

As an enthusiastic brown-thumb gardener, I’ve learned that sometimes all I can do is plant seeds. The seed’s environment does more to determine whether that seed sprouts and blooms or if the seed degrades underground. Is the seed being watered enough, but not too much? Is the soil too acidic? Does it have enough nutrients? Does the seedling have the right amount of sun? Are there pollinators, to help pollinate the seedlings and grow fruit? Different seeds have different germination rates. Not every seed is able to sprout. If we think of an idea as a metaphorical seed, we’d think about all of the different environmental factors that impact whether or not that idea can sprout and blossom. Not all ideas will come to fruition, because not every idea will have the proper environment in which to grow.

Autistic advocacy is frustrating and overwhelming at times, and it is work, and it is okay to take breaks as long and as frequently as needed. The idea that we must always be working on something is a product of capitalism, which is inherently ableist. Your worth doesn’t depend on your productivity.

Disability justice must not be based on lateral violence and the refusal to support those in our community who need support to learn and embrace new ideas. Disability justice must not include attacking and rejecting disabled people who are still learning about disability justice. Disability justice must not perpetuate white supremacy, lashing out at those most marginalized in favor of the rules that white autistics adopt and enforce. Gatekeeping access to the autistic community isn’t disability justice. And this is a hill I would die on.

A work being imperfect or becoming antiquated doesn’t mean that the work is useless; it means that we continue to learn new information over time, and we need to build on prior information to continue learning. We need imperfect resources because people are imperfect. Imperfect resources serve a purpose. Not everyone has the same experiences and understanding, and many of us have internalized harmful rhetoric about what it means to be autistic and what we’re supposed to do about it. Sometimes a gentle introduction to new concepts can be more effective than a bold statement that everything we know is wrong.

To white people… It is not your place to “correct” people of color in the greater autism community. No, not even if whatever exception you’re trying to think of happens. Not your place. Do not scold, chastise, or dogpile allistic parents of color or autistics of color. The people leading the conversation about ableism in communities of color are autistic people of color, and it is the role of white autistics to support autistic people of color.

Listen first, second, and third. Speak last

Get comfortable with being uncomfortable When we enter autistic space, we should do so with respect and check our egos at the door. It’s natural for parents to feel defensive when our views are challenged, especially when it comes to raising our children. We’re accustomed to being experts on that topic. And while it’s true that nobody knows our children better than we do, we aren’t experts on living autistically unless we are autistic ourselves.

In all the fighting we lost sight of the two most important facts: both groups want a better world for autistic kids and autistic kids grow up to be autistic adults. The fights exist between these factions not because of us, or because of them, but because the world we live in is not made for autistic people.

So it’s time—I challenge everyone reading this, both parents and advocates, to put down our swords and hold ourselves accountable for what has happened in the past, but also move forward with forgiveness and humbleness. There is no shame in realizing that you were previously speaking from a less informed place, there is no shame in accepting that we have room to learn and grow still.