Thread by @shannonrosa

I think it should be OK to write about our autistic kids. I do. Because parents who aren't autistic themselves—or who are new to autism—need parent role models who do their best to understand & love their autistic kids, and be the parents those kids need them to be.

A thread! 1/

Parent role models are needed because media & social attitudes about autism/autistic ppl are consistently awful. Parents who have only every hear awful things about autism need guidance for accepting who their kids are, so they can avoid blaming their kids for who they aren't. 2/

Parents of autistic kids also need to learn to give mainstream social expectations a flying middle finger.

All parents, whether their children share their genes or not, obsess about how alike and how different their children are from them. Some of us want to write about that. 3/

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. 4/

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. 5/

But most autism parenting stories are not positive, or about doing our best to understand what our autistic kids need and deserve. Most parent writings center parent-narrators as victims of autism. That these stories keep getting green-lit is both an embarrassment & a tragedy. 6/

I have to ask these parents who trash their autistic kids in public: 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? 7/

Why don’t parents understand that if they treat their autistic kids as “broken" and use traumatizing approaches to "fix" them, then they are they ones who are actually breaking them? 8/

Research show that when autistic kids only get negative or conditional messages about their self-worth, this life-long bullying contributes to the elevated autistic rates of health problems, mental illness, & suicide. 9/

Unfortunately, I understand why so many parents exploit their own kids' trauma: We live in a society that fears autism & disability, & in which even those considered liberal thought leaders don't think twice about reinforcing dehumanizing stereotypes about autistic people. 10/

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. 11/

So it's heartbreaking and horrifying but not surprising when parents of autistic kids feel like they must make the destructive choice to prioritize social expectations over their own child's well being. 12/

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?” 13/

If parents only hear that autism ruins lives and that their kids are burdens, it makes those parents see themselves as victims—to the extent that parents & caregivers who murder autistic and disabled people are, mind-numbingly, still too often framed as victims by the media. 14/

This has to stop. The first step is to stop publishing toxic autism parent memoirs. The second is for disability organizations & prominent autism parents to stop promoting parent accounts that encourage families, schools, & agencies to mistreat our community's autistic kids. 15/

Parents need to try to make the world a better place for our autistic kids. While I don’t expect a parent memoir or a Today Show story to change the universe, I DO expect people of good intent to at least try to not make the world a worse place for my son & his autistic kin. 16/

I want to see more stories about parents doing everything they can to understand what their autistic kids need, so they can lead lives that are easier for their kids—as well as for themselves. 17/

This approach doesn't have conflict with the usual excuse for those wrecking-ball autism 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 autistic kids, or "autism.”

#neurodiversity 18/

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. 19/

But 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.” 20/

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. 21/

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. 22/

Another re-occuring theme of these autism parent 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. 23/

This is the state of autism-parent-victim enabling in our society: these "I love my kid but I hate autism" accounts keep getting propelled, 25 years after autistic writer Jim Sinclair addressed those exact feelings in the essay Don't Mourn For Us:

autreat.com/dont_mourn.html 24/

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

For instance: you don't get to tell the world why you think your autistic kid sucks. 25/

You don’t get to violate your kid’s privacy: You wouldn’t like YOUR toileting habits or sexual experiences publicized w/o permission. This is especially true for people like dependent autistic children who don’t have any recourse for defending themselves—or suing for libel. 26/

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. 27/

I am out of patience with parents in positions to make their autistic kids' lives better but who don’t. Anyone who knows a thing about autism knows that autistic lives are always hard(er than they have to be), and should recognize that these parents are making matters worse. 28/

We need more parents to push back on (social) media/publishers, & proclaim exploiting autistic children for "honesty" & profit unacceptable. Autistic people & families deserve better than the constant barrage of misery and pain the publishing industry assumes to be our lot. 29/29