An example of a parent modeling language on a symbol-to-speech device
[image: AAC device screen with black block text reading "love you"]
"When others don't understand our [autistic] experiences and don't understand how our actions are meaningful responses to them, they may think our actions don't make sense, and try to control them in ways that are harmful to us." -Elizabeth BartmessI think it should be OK to write about our autistic kids. I do. Because I think other parents, especially those who aren't autistic themselves or who are new to autism, need parent role models who do their best to understand and love their autistic kids, and be the parents those kids need them to be. These role models are needed because media messages and social attitudes about autism and autistic people are consistently fear-ridden and awful, so parents who have never heard anything about autism besides negativity need guidance for accepting who their kids are, so they can avoid blaming their kids for who they aren't. Those parents also need permission to give mainstream social expectations a flying middle finger.
I also think all parents, whether their children share their genes or not, obsess about how alike and how different their children are from them. And some of us want to write about that. So I think it's OK for other people to know that my son's physical intuition and grace astound me, as a naturally clumsy person. I think it’s OK that the world knows my son’s memory and visual navigation skills make my jaw drop, as a forgetful and easily confused person. I think it’s OK, as he matures, to be amazed that my little boy is now a man with a beard and broad shoulders. I also think it's important for the world to know how much I love him, how hard I try to understand what his autistic experience means he needs from me and society.
But most autism parenting stories are not positive, or about doing our best to understand what our autistic kids need and deserve. In recent "autism parent" memoirs like Judith Newman's To Siri With Love and Whitney Ellenby's Autism Uncensored, the authors hang their kids out to dry for being autistic and having intensely legitimate autistic needs, while centering the parent-narrators as victims of that disembodied demon, "autism." That these stories keep getting green-lit is both an embarrassment and a tragedy.
I have to ask these parents: Don't they understand that if they aren't on their autistic kids' sides, it's likely that those kids will spend their entire childhood ENTIRELY WITHOUT SAFE PEOPLE OR SPACES? That if their parents treat them as broken and use traumatizing approaches to "fix" them, then they are they ones who are actually breaking them? That until and unless those kids connect with the wider autistic community, they will have only ever received negative or conditional messages about their self-worth, and that research indicates this kind of life-long bullying contributes to the elevated autistic rates of health problems, mental illness, and suicide?
Unfortunately, I understand why so many parents don't think twice about exploiting their own kids' trauma: We live in a society that not only fears autism and disability, but in which even those considered liberal thought leaders don't think twice about reinforcing dehumanizing stereotypes about autistic people. Because of all those negative messages and stories about autism, parents believe their autistic children must be forced to act and feel like non-autistic people, even when their children are obviously miserable. So it's heartbreaking and horrifying but not surprising when parents feel like they must make the destructive choice to prioritize social expectations over their own child's well being.I am still paying the price if my school deciding that forcing me to play was more important than keeping my straight As. That was literally 50 years ago.— Jo Qatana 🐽 (@joqatana) March 1, 2018
I also think parents simply don't understand how contagious, dangerous, and self-reinforcing these negative parenting messages are. And it's not as simple as "If you don't respect and champion your autistic child, who will?" If parents only hear that autism ruins lives and that their kids are burdens, it makes those parents see themselves as victims—a message that is constantly reinforced in the media due to a complete and utter lack of balance—to the extent that parents who murder their autistic and disabled kids are, mind-numbingly, still too-often considered to be victims.
This has to stop. And the first step is to stop publishing toxic, hate-enabling parent memoirs like To Siri With Love and Autism Uncensored. The second is for disability organizations and prominent autism parents like Ron Suskind (who endorsed both books) to stop promoting parent accounts that encourage families, schools, and agencies to torture our community's kids:
What these parents should be doing is trying to make the world a better place for our kids. While I don’t expect a parent memoir or a Today Show story to change the world, I DO expect people of good intent to at least try to not make the world a worse place for my son and his autistic kinfolk. I want to see more stories about parents doing everything they can to understand what their kids need, so they can lead lives that are easier for their kids as well as for themselves..@JustStimming: Disability organizations, especially parent-led ones, need to adopt a zero tolerance policy to rhetoric that normalizes violence against disabled people. #DDoM2018— Ari Ne'eman (@aneeman) March 1, 2018
This approach doesn't have conflict with the usual excuse for those wrecking-ball parent memoirs, which is that "parents need to be honest." I think we can talk about what's going on in our lives without blaming our kids, or "autism." I understand, deeply, how parents of autistic kids can feel lonely and lost. I understand that parents want, and should get, guidance, company, community, and empathy. I understand that sometimes we parents can feel damned if we do/damned if we don't talk about our own needs. As I mused recently:
"I think a lot of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we do not and cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space or help without people assuming our kids are the problem, or feeling like we're going for a pity grab. Which, that's all rooted in society's shitty shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult for us."Parents need to understand that feeling lonely and lost is usually due to a lack of autism-friendly social fabric and services and parent education, and that that is not the fault of one's autistic child, or, again, of "autism." So while I understand to the center of my marrow that parents of autistic kids don't have enough supports either, I am never going to make excuses for parents like Jill Escher who publicly belittle and disrespect their autistic children. Instead, I am a roaring Mama Bear when it comes to demanding that other people treat my autistic son and his people with respect, and on their terms, as long as they're not inconveniencing anyone else.
Another re-occuring theme of these accounts is the parents declaring how much they love their autistic kids. What those parents don't seem to understand is that writing about an autistic child with love but without understanding is still explosively damaging. Consider the video and testimony of Kate Swenson of Finding Cooper's Voice, as featured on The Today Show:
"I had to grieve the life I pictured before I could accept the life that was given to me. My hope for you is that once you have a diagnosed child, and you’ve made it through, I want you make it your mission to be that person for someone else. Say it sucks. Say you hate autism. Say you feel robbed and slighted. Say it is hard having a child with an unknown future. These are the facts that they want to hear. They need to hear them. Don’t sugarcoat it. Don’t lie. Let them cry and be angry. Sit with them in the dark for a while. Listen to their angry, confused, lost, heartbroken words."And that is the state of autism-parent-as-victim enabling in our society: these kinds of "I love my kid but I hate autism" accounts keep getting propelled, twenty-five years after autistic writer Jim Sinclair addressed those exact feelings in the landmark essay Don't Mourn For Us:
'Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.'Parents need to hear, constantly and from multiple sources, that there are things you get to share publicly, and things you don’t. You don't get to tell the world why you think your kid sucks. You don't get to tell the world about things you wouldn't want other people writing about you without permission, like your toileting habits or sexual experiences. This is especially true for people like dependent autistic children who don’t have any recourse for defending themselves—or suing for libel. Parents need to be taught that their kids deserve boundaries and privacies and basic respect. And they need to hear this from other parents as well as from autistic people and other community members.
Consider autistic writer Ann Memmott's caution to parents of autistic kids who argue that they have "a right to say how it feels":
“Will they go to a school, to find that the more able readers have read all about their toileting habits, and use that information to bully them? Will they go to start a job, in years to come, and find their employer has Googled their name and is now reading what Dad said about how this person destroyed their lives? Yes, you can't imagine that your child will ever be in work. People couldn't believe I was going to work, either.”Parents shouldn’t write or publish publicly available accounts about their kids that they wouldn’t want those kids to read. Parents should also presume competence about those kids' ability to read or understand what the parents say, however those kids best access information. My son doesn’t read books like To Siri With Love or Autism Uncensored, but he was featured in the book NeuroTribes, so I got the audiobook version, and we listened to the parts about him together (I skipped some of the sections about autism eugenics and abuse; Mama Bear, again).
That’s the thing about presuming competence, about treating our autistic kids with basic human decency: It’s not about “he probably won’t get this” but rather “what if she gets this?” and erring on the side of that caution. Plus, our autistic kids are known for rarely forgetting anything: My son still asks to see couples who divorced when he was a youngling, for instance. If you really are at a loss as to how your kid’s brain works, then maybe always proceed with caution and thoughtfulness instead of treating your kid like comedy roast fodder. But in To Siri, in Autism Uncensored, these boundaries don’t exist.
This lack of respect or boundaries explains a common tendency by to the authors of these parent memoirs: when they start receiving criticism about exploiting and dehumanizing their own kids, they self-righteously claim that autistic people who can call out parents' misbehavior and fallacies just don't understand the problems of "real" autistic people like the authors' kids. What this defensiveness prevents parents from understanding is that autistic people tend to be on their kids' sides:
Now, it is never helpful to tell people that their feelings are wrong. But the reason parents of autistic kids feel entitled tell the world how much they think autism parenting sucks is, again, based on society-wide fearing, loathing, and misunderstanding about autism—which these memoirs are reinforcing, not battling. What if, instead, publishers understood that parents need autism-positive parent resources? What if, instead, influential parents of autistic kids started working towards a society that welcomed people of all abilities, with the goal that families and people who need extra supports can easily access them?As a parent, having #ActuallyAutistic people to advise you is fundamental to a better understanding of your kids issues.— G (@GG_Aguado) March 1, 2018
My son's therapist had a diagnosis himself. The insight he provided was invaluable to my relationship with my boy.
I am not alone in being out of patience with authors like Newman and Whitby, people who are in a position to make their autistic kids' lives better and don’t. Anyone who knows a damn thing about autism knows that, by default, autistic lives are always hard(er than they have to be), and should recognize that these parents are making matters worse. This is why reactions from the autistic and autistic-aligned community to both Newman's book and Ellenby's recent Washington Post article promoting her book are deservedly critical:Even though I'm pissed (and tired of being pissed) about the never-ending publication of negative autism parenting memoirs, I also hold out hope that people (and publishers) can change for the better. But for that to happen, we need more people to stand up and tell the world that exploiting your autistic child for "honesty" and profit is unacceptable, and that autistic people and their families deserve better than the constant barrage of misery and pain the publishing industry assumes to be our lot.
This article is her spiked-football victory dance. The LOSER parents go slow and build consent and trust and communication, but SHE grabbed that ball and ran for the touchdown. GOAAAAALL.— Ana Mardoll (@AnaMardoll) February 28, 2018