How I Want People To Talk With (And About) My Autistic Son

January 26, 2020January 31, 2022 by Shannon Des Roches Rosa

Photo © Shannon Des Roches Rosa [image: Photo of a teen wearing a jacket and baseball cap, seen from behind, far ahead on an oaken hillside trail.] Shannon Des Roches Rosa @shannonrosa When I was in physical therapy to rehabilitate a busted knee, the kind, competent therapists tended to make small talk—which invariably meant fielding tentative, well-meaning questions about my autistic son. That gave me the opportunity to model the way I’d like other people to talk and think about him. Here’s how those conversations usually go: PT: “Autism. Um. That must be hard.” Me: “Well, my son is a very awesome person. And he’s 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, and it can be hard for him to communicate. But he’s a wonderful person.” PT: “That’s really interesting.” (Processes what I’ve said,…

Two Vietnamese men, crouching and talking alongside a riverbank.

Autism

Being HyperVerbal Is A Real—And Disabling—Autistic Experience

July 11, 2019June 11, 2022 by M. Kelter

Hyperverbal expression, whether it is verbalized or experienced internally, is autism and it is a disability. It has less to do with the volume of words expressed and more to do with the processing style that is common to some autistic people.

Disability

What Good Representation of Autistic Characters Looks Like, Part II: Diversity in Autistic Characteristics and Demographics

March 1, 2018January 31, 2022 by Shannon Des Roches Rosa

Elizabeth Bartmess elizabethbartmess.com This is a three-part series. Part I explores autistic interiority and neurology. Part III explores Setting, Plot, and Character Growth. In Part I, I talked about how neurological differences affect autistic people’s internal experiences and strategies, and how we change over time as a result. Today, I’ll talk about variation in autistic characteristics, in our and others’ relationship to our diagnosis (or lack of it), and variation in demographics, as well as how others’ perceptions of us influence how they treat us, and how we change in response. On Friday, I’ll bring everything together and add some thoughts and links to advice on writing autistic characters, along with a list of some common aspects of autistic experience that are underrepresented in fiction, plus a list of all the books and short stories I’ve mentioned. Even though autistic people have many things in common, we also vary a…

Disability

What Good Representation of Autistic Characters Looks Like, Part I: Interiority and Neurology

February 28, 2018January 31, 2022 by Shannon Des Roches Rosa

Elizabeth Bartmess elizabethbartmess.com This is a three-part series. Part II explores Diversity in Autistic Characteristics and Demographics. Part III explores Setting, Plot, and Character Growth. “A lot of writers and actors seem to be able to get their heads around what autism basically is, in terms of language, sensory, and social communication difficulties. But then it’s as if they don’t know, or can’t extrapolate to, the full range of experiences that autistic people actually live. That things have happened to us, and things have happened in certain ways for us all our lives, and those things have had consequences for who we become and who we are….[T]he autistic characters [readers and viewers] are used to seeing have no depth of experience. They are people without history.” —Chavisory, at Chavisory’s Notebook This series is about what autistic characters look like when they’re written well, when they have the depth of experience…

Disability

The Effects of Stigmatizing Language on Suicidal Autistics

July 30, 2016January 31, 2022 by Shannon Des Roches Rosa

M. Kelter theinvisiblestrings.com Photo by Boudewijn Berends, used under a Creative Commons license [image: head and shoulders of a person wearing glasses backlit by partially-lighted fog and clouds.] When it comes to online discussions about autism issues, I regularly interact with two realms. The first realm is one we’re all familiar with: the day-to-day articles and conversations and debates that take place regarding a wide range of spectrum issues. Causation, research, personal stories, opinions … just the usual autism topics that you come across as you scroll around blogs, and Twitter, and Facebook. The second realm consists of an invisible community. It’s made up of people who are absorbing every discussion, every debate, every article … yet they are not participating, not sharing their own ideas. They’re just there, quietly and attentively taking it all in. This second group is made up of suicidal autistics. This is not just an…

Disability

Fish Out of Water

October 9, 2013January 31, 2022 by Shannon Des Roches Rosa

Lydia Wayman autisticspeaks.wordpress.com I take in a gulp of air and shut my eyes tight before I plunge beneath the surface. One, two, three… It starts to feel like my brain is tingling from the inside. Four, five, six… I’m not counting in seconds, not in minutes, but in hours. Seven, eight, nine… I search for anyone, anything who will ground me through my ever-increasing internal chaos. Ten! When given the cue, I cannot break the surface fast enough, gasping for breath. I’ve done this thousands of times, and yet, after twenty-five years of daily descents, I am no more sure that I will survive the next one. —- I’m really not a writer. Writers have readers. I write because it’s the only way for me to get from one day to the next without semi-spontaneous internal combustion taking effect. I’m not a writer. I’m a processor of the world, an organizer…

Disability

A Partial History of Ableist Language

July 26, 2013January 31, 2022 by Shannon Des Roches Rosa

Adam Thometz angryautie.wordpress.com I recently came across a post by Lydia Brown at Autistic Hoya, one of my favorite autism/disability blogs, in which she creates a glossary of ableist vocabulary. The reason for including some of the words should be immediately apparent to anyone with their head in this century (eg. “retard,” “mongoloid,” “suffers from ___”) but there are some words, the inclusion of which seems questionable or just overly sensitive or PC to the average person (eg. “idiot,” “dumb,” “moron”). I myself was shocked to find these words as well but it turns out that these words have a dark history that most people are not apparently aware of. When I debate with someone about autism in real life, I might perform what the average person would see as nitpicking: criticizing the use of certain words or phrases. My reason for doing this is that they invisibly propagate the…

Disability

Why Wouldn’t Autism Parents Want to Presume Competence?

December 5, 2012January 31, 2022 by Shannon Des Roches Rosa

Jaden Walker about.me/jaden.walker A few days ago, congress held a panel on the rising prevalence of autism. As I worried, a great portion of the debate devolved into the long debunked connection between autism, vaccines, and mercury. To put it mildly, I spent a lot of it with my palm firmly attached to my face. One of the redeeming portions was near the very end, where two actual autistics were allowed to speak: John Michael Carley and Ari Ne’eman. While I won’t get into everything that was said (these two were brilliant, as always), one moment is stuck in my head and I just can’t shake it. One of Carley’s comments was (my quote is probably not exact), “Your sons and daughters with autism can hear what you say about them and read what you write about them.” Before he’d even fully finished the sentence, several people behind him began…