I see you when you are having a tough day yet still manage to interact with your child with respect and kindness.
2/
Aug 2, 2022 • 42 tweets • 9 min read
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….)
What will we be talking about? Well, I’m mostly interested in creating sensory-friendly homes and environments. 1/@TheSTARInst Specifically, it’s crucial to understand that we CAN create sensory-friendly environments that allow everyone therein to function best. It isn't always easy, and can mean compromise if there are competing access needs. 2/
Mar 12, 2022 • 26 tweets • 7 min read
It’s tricky to be a parent advocate in the autism community, especially if, like me, you are not autistic yourself. Autism is about autistic people, & that’s who should be leading autism advocacy efforts. Threading my recent @AutismOAR column:
researchautism.org/what-is-the-ro…#autism 1/@AutismOAR …But in the nearly two decades since my son was diagnosed, I’ve learned that I do have a role as an advocate: To learn and share and fight for the policies and knowledge needed for my son to live a good life as an autistic person.
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!
Apr 11, 2021 • 29 tweets • 7 min read
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
#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/
Apr 3, 2021 • 11 tweets • 5 min read
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.
Apr 2, 2021 • 34 tweets • 7 min read
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/
Oct 25, 2020 • 48 tweets • 13 min read
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/
Oct 15, 2020 • 29 tweets • 5 min read
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/
Oct 2, 2020 • 22 tweets • 4 min read
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/
Sep 30, 2020 • 7 tweets • 4 min read
Autistic distress behavior is then perceived as non-compliance & the kids get punished for "misbehaving." And THEN the parents publicly complain about the kids, focusing on how awful autism is for the parents—rather than on the tragedy of autistic kids' needs being overlooked. 6/
I can't blame parents of autistic children for being pissed off in general, because our kids' and families' rights, supports, and services needs are rarely sufficiently addressed: We ALL feel disenfranchised, because we ARE all disenfranchised. 7/
Sep 30, 2020 • 5 tweets • 1 min read
As the parent of a high-support autistic young adult, what do I want for my son’s future & from society? I want other people accepting my son on his terms, & letting him know he's considered part of the community.
(Yes, my pretties, sit tight for a thread.) #neurodiversity
1/
I wish attitudes of autism and disability acceptance were more common, so that I could feel less anxious about my son's safety and well-being as he moves through the world now, and also in his future without me and his father by his side. 2/
Aug 24, 2020 • 4 tweets • 1 min read
Anti-#neurodiversity cranks like to claim “this person [who is calling me out for being an ableist ass] wouldn’t last a day with my son/sister etc”—ignoring the fact that many such critics have worked/do work with high-support autistics & that’s only 1 reason they're so critical.
…Such critics also include high-support autistics themselves, people who required more supports as kids, HS autistic family members, and/or people who think that listening to the lived experience of disabled people actually matters when it comes to best practices for QoL.
Aug 10, 2020 • 4 tweets • 1 min read
Our state, CA, allows those with I/DD to have support people stay in the hospital with them, but this isn't universal. And even if one of us were to stay with my son, pandemic safeguards & protocols would make that experience exponentially more stressful & fraught than usual. 26/
Federal civil rights prohibit medical discrimination against PWD, but if choices need to be made, I worry that my son may be denied care due to negative stereotypes about disabled people's quality of life—that’s what recently killed Michael Hickson: npr.org/2020/07/31/896…
27/
Aug 10, 2020 • 25 tweets • 7 min read
Autism versus Face Masks and Maskholes: A thread about why you shouldn't jump to conclusions about people who don’t wear masks, and what people who can’t wear masks—like my autistic son—can do to protect themselves from #COVID19. Adapted from:
squidalicious.com/2020/05/pandem… 1/
It’s several months into mandatory pandemic face masking, & my son still can't wear a mask—even though he knows he's supposed to wear one, & we talk about how they help protect people from COVID-19 & why it is a deadly & contagious virus. A good guide: gmsavt.org/wp-content/upl… 2/
Jul 27, 2020 • 9 tweets • 2 min read
When autism awareness is deployed as a weapon—especially without autism understanding or acceptance—it enables ignorant crusades like anti-vaxxer autism martyr parent pity parties, instead of emphasizing how to get autistic kids/adults/famlies needed supports. A thread, again! 1/
Parents who believe autism causation conspiracy theories are unlikely to have epiphanies about doing right by their autistic kids any time soon, as they are mostly of a certain class and certain inability to believe that money can't buy happiness. They feel cheated and angry. 2/
Jul 22, 2020 • 10 tweets • 2 min read
What are some accommodations for autistic people during this pandemic, ones that respect their needs & their style of managing stress? Here is what my family does, based on advice from autistic folks. (Reposting as…still in a pandemic. Also: Thread!)
spectrumnews.org/opinion/viewpo… 1/
Be patient. If you need time to adjust to the limits and demands of sheltering in place, your autistic loved ones need even more time. Do not expect them to appreciate or adjust easily to changed routines, such as online learning, or being housebound—even after months. 2/
Jul 19, 2020 • 5 tweets • 2 min read
Documenting Tr**p’s endless fuckery:
1) Ronald Cameron of Arkansas chicken producer Mountaire, gave millions to the MAGA campaign while simultaneously forcing underpaid workers to pay for their own #COVID19 protective gear—& docking their pay for the time needed to put it on. 1/2) Got 45 to declare a fake “meat shortage” so workers were classified as essential, and were not allowed to NOT work for fear of losing their jobs—meanwhile increasing meat exports to China. 2/
Jul 13, 2020 • 23 tweets • 6 min read
Let’s talk about what inclusion is, & what it isn’t—from my perspective as the parent of an exuberant, high-support, much-loved autistic young adult who takes up a lot of space wherever he goes—& so has few real-world participation opportunities. A thread!
#neurodiversity 1/
Inclusion is a real and basic human right, and simply means my autistic son has the right to be out and about in the world, as opposed to being segregated from or hidden away, as used to be the default for the generations of high-support autistic people before him. 2/
Jun 28, 2020 • 32 tweets • 12 min read
Let’s talk about autism and health care, shall we? (Yes, this is going to be a thread.)
First of all, we all need to acknowledge that autistic people as a community and a population are badly served by the current state of health care and supports. #Neurodiversity
1/
Both formal research & autistic people's own reports show that autistic health concerns—including mental health issues—are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions. 2/
