Thread by @shannonrosa

I think it should be OK to write about our autistic kids. I do. I think other parents, esp. those not autistic themselves or new to autism, need parent role models who do their best to understand & love their autistic kids, & be the parents those kids need them to be. Thread. 1/

(You won't need to unroll; this thread is drawn from a TPGA article titled The Toxicity of Autism Parent Memoirs:
thinkingautismguide.com/2018/03/the-to….)

#autism #parenting 2/

Parent role models are needed bc media messages/social attitudes about autism & autistic people are consistently fear-ridden & awful, so parents primed on autism negativity need guidance for accepting who their kids are—so they can avoid blaming their kids for who they aren’t. 3/

Parents of autistic children also need permission to give mainstream social expectations about child raising and parenting a flying middle finger.

#Neurodiversity

4/

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. 5/

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. 6/

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. 7/

But most autism parenting stories are not positive, or about understanding what our autistic kids need & deserve. Most “autism parent” memoirs blame kids for being autistic & having intensely legitimate autistic needs, while centering the parent-narrators as victims of autism. 8/

That such memoirs keep getting green-lit is an embarrassment & a tragedy.

I have to ask the 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? 9/

Readers and authors of "autism parent" memoirs need to understand that if the parent-authors treat their autistic children as broken and use traumatizing approaches to “fix” them, then they are the ones who are actually breaking those children. 10/

CN: Suicide

Also: Until & unless autistic kids connect with the wider autistic community, they may only receive negative or conditional messages about their self-worth—& this kind of life-long bullying contributes to the elevated autistic rates of health problems, & suicide. 11/

Unfortunately, I understand why so many parents are willing to exploit their own kids’ trauma: We live in a society that not only fears autism & disability, but in which even many "progressives" don’t think twice about reinforcing dehumanizing stereotypes about autistic ppl. 12/

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. #neurodiversity 13/

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 autistic child’s well being. 14/

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?” 15/

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 with regards to autism narratives... 16/

CN: Filicide

...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.

#Neurodiversity

17/

The second step, in improving autistic lives on a widespread social scale, is for disability organizations and prominent autism parents to stop promoting parent accounts that encourage families, schools, and agencies to dismiss, belittle, and torture autistic kids. 18/

What these parents should be doing is trying to make the world a better place for autistic kids. While I don’t expect a parent memoir 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 & his autistic kinfolk. 19/

I want to see more stories about parents doing everything they can to understand what autistic kids need, so their kids's lives—and theirs—improve.

This approach doesn’t have conflict with the usual excuse for wrecking-ball parent memoirs, that “parents need to be honest.” 20/

I think we can talk about what’s going on in our lives without blaming our kids, or “autism.”

21/

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. 22/

I think many of us parents whose kids need significant support have a hard time talking about our own support needs in a reasonable way. While we cannot blame our kids for matters over which they have no control, it is tricky to talk about why we might need extra space/help… 23/

…without people assuming our autistic kids are the problem, or feeling like we’re going for a pity grab. Which is all rooted in society’s sh***y shallow attitudes towards disability, so f**k society for making yet another aspect of living our lives that much more difficult. 24/

Parents need to understand that feeling lonely and lost is usually due to a lack of autism- and disability-friendly social fabric and services and parent education, and that that is not the fault of one’s autistic child, or, again, of “autism.” 25/

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 who publicly belittle and disrespect their autistic children. 26/

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. 27/

Another re-occuring theme of toxic "autism parent" memoirs 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. 28/

This is the state of autism-parent-as-victim enabling in our society: These kinds of “I love my kid but I hate autism” stories keep getting promoted propelled, 29 years after autistic writer Jim Sinclair addressed those exact feelings in the landmark essay Don’t Mourn For Us. 29/

Jim Sinclair wrote, "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."

Full essay: autreat.com/dont_mourn.html

#Neurodiversity

30/

Parents need to hear, constantly and from multiple sources, that there are things you get to share publicly, and things you don’t.

Most of all, you SHOULD NOT be encouraged to tell the world why you think your defenseless and blameless autistic child sucks. 31/

Parents of autistic people should not be telling the world about things they wouldn’t want other people writing about them without permission, like their toileting habits or sexual experiences. 32/

This is especially true for dependent autistic children who can't defend themselves. Parents need to hear that autistic kids deserve boundaries & privacy & basic respect. And they need to hear this from other parents as well as from autistic people & other community members. 33/

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. 34/

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?” & erring on the side of that caution.

(See @JustStimming's take: juststimming.wordpress.com/2014/12/21/dan…)
35/

Plus, our autistic kids are known for rarely forgetting anything.

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. 36/

Unfortunately, when parent memoirists get criticism about 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. 37/

What this defensiveness prevents parents from understanding is that autistic people tend to be on those parents' kids’ sides, because those autistic people too often were subjected to the same negativity and misinformation about autism that these parents are now perpetuating. 38/

Now, it is rarely helpful to tell people their feelings are wrong. But the reason "autism parents" feel entitled tell the world how much they think autism parenting sucks is, again, based on society-wide negativity re: autism—which such memoirs are reinforcing, not fighting. 39/

What if, instead, publishers understood that parents need autism-positive resources? What if influential parents 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? 40/

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. 41/

But for that to happen, we need mainstream media to recognize that exploiting autistic children for “honesty” & profit is unacceptable, and that autistic kids & their families deserve better than the chronicles of misery & pain the publishing industry assumes to be our lot. 42/42