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Shannon Des Roches Rosa

19 May, 10 tweets, 9 min read

I can’t stress just how screwed most parents of autistic kids are when it comes to finding good info that will actually help those kids and their families live the best lives possible. PLEASE LET ME HELP YOU LIVE YOUR BEST LIVES, and you can start by listening to autistic adults.

And I don’t mean “listen to all autistic adults without any filter” because autistic adults can give mean, awful, horrible advice, just like any randos from a huge diverse group of humans. But let me guide you to the good sources! My son’s and my lives are so much happier now!

@MelissaFJackso1

To start: here’s what I’ve learned about parenting & autism: After an Autism Diagnosis: 13 Necessary Next Steps For Parents: thinkingautismguide.com/2017/03/after-…

How listening to autistic adults helped me understand & support my son:
washingtonpost.com/lifestyle/2019…

cc: @MelissaFJackso1 @dinacepulo

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo There’s also a brand new book from @awnnetwork_: Sincerely, Your Autistic Child: What People on the Autism Spectrum Wish Their Parents Knew About Growing Up, Acceptance, and Identity:

beacon.org/Sincerely-Your…

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo @autselfadvocacy now has Start Here: a guide for parents of autistic kids, for "parents of autisic children who wish they’d had a better resource to learn about autism.” autisticadvocacy.org/book/start-her… in the “Your child is not broken” tradition of Jim Sinclair: philosophy.ucsc.edu/SinclairDontMo…

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo @autselfadvocacy If you child has communication disabilities, then @Communica1st is a great org! They "seek to end prejudice and discrimination against people with speech-related disabilities and conditions, and to promote equity, justice, inclusion, and opportunity.” communicationfirst.org

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo If your child has complex medical needs, then @LittleLobbyists is a fab community that seeks to "protect and expand the rights of children who have complex medical needs and disabilities through advocacy, education, and outreach.” littlelobbyists.org

littlelobbyists.org

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo And then there’s @thinkingautism, which I run with parents of high-support autistic kids (some of whom are themselves autistic), and which is a information sharing nexus for autistic people, parents, &/or professionals. We pose a LOT of community Qs on FB: facebook.com/thinkingperson…

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo @thinkingautism We also have a website at thinkingautism.com with hundreds of autism-related articles—like a checklist for determining whether or not an autism org is actually going to help you/your child: thinkingautismguide.com/p/position.html

@MelissaFJackso1

@MelissaFJackso1 @dinacepulo And eventually, we will have a second edition of our Thinking Person’s Guide to Autism book. So stay tuned. And let us know if you have any specific or general questions. Both I and @thinkingAutism are here to help!

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More from @shannonrosa

Shannon Des Roches Rosa

@shannonrosa

11 Apr

@thinkingautism

When your child get an autism diagnosis: Here are 13 next steps for parents that I WISH someone had told me at the time! A thread, drawn from the @thinkingautism archives, and in observation of #AutismAcceptanceMonth

thinkingautismguide.com/2017/03/after-…

#neurodiversity

1/

After my son’s autism diagnosis, I wished it hadn't taken me so damn long to figure out the best ways to support, help, advocate for, and express my love for my now-adult son—who has always deserved better than a reeling, terrified, depressed, confused, and regretful mom. 2/

I should have given myself more time to recognize my wonderful autistic boy for who he is, rather than what ignorant, misguided people insisted autism made him. I also wish I'd been able to recognize and dismiss all that debilitating ignorance, fear, and confusion. 3/

Read 29 tweets

Shannon Des Roches Rosa

@shannonrosa

3 Apr

@roygrinker

Now reading Nobody’s Normal: How Culture Created the Stigma of Mental Illness. It’s a new book by @roygrinker, who also wrote the autism assumptions-challenging Unstrange Minds. Will try to thread my ongoing commentary.

#NobodysNormal

Although Grinker is not himself a psychiatrist, he comes from a line of such professionals, and also studies mental illness from an anthropologist’s perspective.

@roygrinker

“Although 60 percent of people with a mental illness in the United States still receive no mental health treatment, mental illness is fast becoming a more accepted and visible part of the human condition.” @roygrinker, in #NobodysNormal

Read 11 tweets

Shannon Des Roches Rosa

@shannonrosa

2 Apr

@washingtonpost

I didn't write a new #AutismAcceptanceDay post because pandemic, so please harken to this @washingtonpost chestnut on my long but fruitful autism & parenting journey—How listening to autistic adults helped me understand & support my son:
washingtonpost.com/lifestyle/2019… #neurodiversity 1/

Having a disabled child is not particularly rare. Yet our society rarely addresses disability as a real parenting possibility, which means non-disabled parents like me are usually in the dark about best practices for raising a child with a disability. 2/

This state of ignorance is unfair to everyone involved and has made countless kids and parents miserable.

It really doesn’t have to be this way, though. 3/

Read 34 tweets

Shannon Des Roches Rosa

@shannonrosa

25 Oct 20

Let’s talk about Why No Autistic Child Should Be in ABA Therapy. I am coming at this from the perspective of a parent whose autistic son is an older teen. Regrets, I have a few. And so we need a thread!

Also, you won’t need to unroll, article is here: thinkingautismguide.com/2020/10/why-no…
1/

Professionals usually tell parents of newly diagnosed autistic children that it is "critical" to put those children in early intervention therapies like Applied Behavioral Analysis (ABA). Parents are warned about "missing a developmental window…” 2/

…then urged to place young autistic children in intensive therapy for up to 40 hours per week. We are told that these therapies are justified by decades of research, and that they will save our autistic children by making them "indistinguishable from their peers.” 3/

Read 48 tweets

Shannon Des Roches Rosa

@shannonrosa

15 Oct 20

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/

Read 29 tweets

Shannon Des Roches Rosa

@shannonrosa

2 Oct 20

Sadly, most writing from parents about autistic kids is not only awful, but self-defeating: If you publicly write smack about your kids, then it is hypocritical to complain when other people treat those kids badly.

So what does GOOD writing about autism & parenting look like? 1/

Also, how can we parents recognize harmful writing about autistic children, and avoid those negativity pitfalls?

Following are four too-common examples of such bad "autism parent" writing, why using these approaches is not useful, and what you can do instead. 2/

Bad autism parent writing trope #1: "I am furious that people celebrate autism acceptance. My child suffers from autism and needs a cure.”

Considering autism a curable disease is misinformed thinking. High-support autistic people have always been part of society. 3/

Read 22 tweets

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