Shannon Des Roches Rosa Profile picture
Thinking Person's Guide to Autism. Will talk indefinitely about cephalopods and Star Trek (and sometimes listen, too). She/Her. Neutral Good. Earnest AF.
10 Aug
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/
When I put my mask on, he puts his on, too. And then, because the feeling of a mask on his face is intolerable for autistic sensory reasons, he takes that mask right off again. I don't know if he'll ever be able wear a mask for more than sixty seconds. 3/
Read 25 tweets
27 Jul
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/
And it is my duty to call out my kind when they embarrass us all in their clueless unexamined privilege: Not only regarding the irony of speaking out about vaccines when they have no experience with vaccine-preventable diseases thanks to growing up in a vaccinated cocoon… 3/
Read 9 tweets
13 Jul
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/
Inclusion does NOT mean forcing autistic and disabled people to be in places they don't want to be, which aren't set up for or accessible to them, or in which they aren't welcome. 3/
Read 23 tweets
28 Jun
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/
It is unconscionable for our autistic & disabled community members to receive improper and insufficient health care. @HonTonyCoelho wrote about Patients Harmed by 'Cost-Effectiveness' Measures in 2017: realclearhealth.com/articles/2018/… 3/
Read 32 tweets
1 Jun
If your child has recently been diagnosed autistic, as my son was in 2003, here's what I want you to know: Learn from me, don't be me. Here are 13 Next Steps For Parents After an Autism Diagnosis.

(Yep, this is going to be a thread.)

thinkingautismguide.com/2017/03/after-…

#neurodiversity
1/
When professionals first started suggesting that my son might be autistic, I reeled. I didn't know anything about autism at the time, except as disability version of a child-stealing bogeyman. When my son's diagnosis was confirmed, I was terrified. 2/
…And then I was depressed. And then I got to work on figuring out how to parent an autistic kid. And then I made a lot of mistakes. And then I rued those mistakes and tried to do better. 3/
Read 40 tweets
22 May
You know what? Let’s make this a thread. I’m going to talk about the four most common fallacies in parent writing about autistic kids, and why they are hooey. The goal here is to teach you to identify baloney, even when it doesn’t have a first name. *rimshot*

1/
Unfortunately, when it comes to writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well? 2/
So let’s talk about the four ickiest examples of bad parent writing about autistic kids, why using these approaches are not useful, and what you can do instead.

#Neurodiversity

3/
Read 27 tweets
25 Apr
Autism research is mostly failing my teenage son & his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—& we’re now telling people what they need to hear, not what they want to hear.

Saddle up, this is going to be a thread. 1/
I've been going to autism science conferences & scrutinizing #autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people here already. 2/
Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of "intervention," rather than focusing on quality of life, & largely neglects those like my son who have intellectual disability &/or communication disabilities. 3/
Read 17 tweets
30 Mar
If you want to do right by your autistic kid (or any autistic person, really), then please do your best to understand and respect these eleven factors about being autistic. From this article, but this is also a thread:

thinkingautismguide.com/2017/04/eleven… #Neurodiversity #autistic #autism 1/
(1) Processing Time: Almost every #autistic person I know has their own rhythm and speed at which they process information. In my son's case, this means giving him a few beats to respond, rather than impatiently assuming he didn't understand what was said. 2/
Other processing scenarios include relying on captioning for comprehending videos or movies—even for those who can hear—or needing to record & re-listen to lectures. Disregarding processing needs can lead to #autistic ppl having their abilities or comprehension underestimated. 3/
Read 31 tweets
23 Feb
Sometimes it's hard to be the parent my #autistic son needs me to be, & I’m always learning about best & better practices. But I wish the research that could help him was better, too.

This is going to be a thread based on a recent @AutismOAR post:

researchautism.org/striving-to-be…

1/
@AutismOAR How is it that my #autistic son is nineteen years old? How is he not still the cute little dude who used to fit on my lap; how is it that he is now so much bigger than me that I am now wearing his hand-me-downs? #parenting #autism #Neurodiversity

2/
@AutismOAR Time flies just as fast when parenting an autistic child as with any child, which is a truism I wish I’d been told when my son was diagnosed as autistic almost sixteen years ago. What else have I discovered about raising an autistic child? 3/
Read 22 tweets
20 Feb
Today I want to talk about how ‘Autism Warrior Parents’ Harm Autistic Kids. These thoughts are from an evergreen article I wrote for the dearly departed Establishment: medium.com/the-establishm…

This is going to be a thread.

#autism #parenting #Neurodiversity 1/
Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. #autism 2/
…That is, unless the kids in question are #autistic—in which case parents are too often encouraged to pursue approaches that traumatize & alienate their kids. I call these types “Autism Warrior Parents,” & people caring for autistic kids can learn a lot from their mistakes. 3/
Read 46 tweets
12 Feb
I’m the mother of a high-support #autistic young adult. I’m going to give it to you straight about antivax disinfo: why it’s nonsense, why it’s dangerous, & why it’s hurtful—especially to people like my son.
This is going to be a thread.

#autism #VaccinesWork #Neurodiversity 1/
I want to talk about a critical aspect of vaccine advocacy, which is understanding how vaccine-autism misinformation hurts the amazing people in the #autistic communities in general, and people like my wonderful, happy, autistic son specifically. 2/
If more people understand that #autism is nothing to be afraid of & is part of human diversity—if we share more messages about accepting #autistic people like my son, who need significant support but also have unrecognized abilities and have always been part of our society… 3/
Read 35 tweets
26 Jan
I think a lot about How I Want People To Talk With (And About) My #Autistic Son, and try to model the way I'd like other people to talk and think about him. Here’s how those conversations usually go.

#neurodiversity 1/
Other person: “Autism. Um. That must be hard.”

Me: “Well, my son is actually more easygoing than his siblings. He’s like a lot of autistic people—it’s hard for him to be in places that aren’t autism-friendly…

2/
"…and it can be hard for him to communicate. But my autistic son is a wonderful person.”

Other Person: “That's really interesting.” (Processes what I’ve said, ideally.)

3/
Read 27 tweets
30 Dec 19
CN: murder, disability, & mental health.

There is a horrifyingly typical coupling of devotion with murder, whenever disabled people are involved.

I'm here to say: Fuck that.

This is going to be a thread.

#Neurodiversity

1/
I need you—and judges and reporters everywhere—to understand that, however difficult it may be for families to support their disabled loved ones, *murder is never excusable*. There are always other options.

Always.

2/
Consider that disability-related murders are more common than the occasional high-profile story might have one suppose—according to Julia Bascom @JustStimming of the Autistic Self Advocacy Network @autselfadvocacy, the average rate for these murders is…

One. Each. Week.

3/
Read 11 tweets
13 Dec 19
My #Autistic Son Needs 24/7 Support. And That's OK.
We have a good life, because we stopped buying into mainstream notions about what happy families look like.

This is going to be a thread.

#neurodiversity #autism 1/
I’m the parent of a high-support autistic teenager, which means some people would say he “has severe autism.” By our own parameters, my family is a happy and well-adjusted crew. But before you make assumptions about me being a positivity unicorn… 2/
…or that my son must be only “mildly” #autistic, please know that my beloved dude is a mostly non-speaking ball of# autistic energy who requires 24/7 support. 3/
Read 29 tweets
4 Dec 19
Autism researchers and research funders: if you don’t listen to autistic community members and leaders about what #autistic people want investigated, you are not actually helping the autistic people you really, truly think you’re helping. This is going to be a thread. 1/
Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. 2/
I've been going to autism science conferences & scrutinizing autism research for nearly a decade, & during this time most autism studies have remained mired in areas like causation—which does absolutely nothing to improve the lives of autistic people who are here already. 3/
Read 26 tweets
29 Dec 18
The one autism & parenting approach I want folks to absorb for 2019: if your #autistic child is violent or aggressive then that usually means something is really really wrong with them, health or environment-wise, and you really need to figure out what it is—for everyone’s sake.
It can be really, really hard to figure out the source of an autistic kid’s (or adult’s) extreme distress. But you know what makes it harder? People assuming aggression is "because of autism,” & not because something is wrong. And then so much avoidable suffering happens.
This is why you don’t want to listen to #autism “experts" who recommend “extinction,” punishments or aversives for kids who are aggressive, without even bothering to figure out why they might be in pain or other distress—because that is ignoring/punishing someone who needs help.
Read 10 tweets