Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from http://yesthattoo.blogspot.com/post-specific-URL.

Wednesday, November 18, 2015

Review: The Real Experts

Today, I'm reviewing The Real Experts: Readings for Parents of Autistic Children, edited by Michelle Sutton and published by Autonomous Press.

Or I'm reviewing most of it. The cover art is mine, and the essay on autism and language is also mine. I am not reviewing my own contributions, and will leave that to people who are not me. Suffice it to say that I would not submit an essay I disagreed with for publication.

Looking at the table of contents, I recognize many, but not all, of the contributors. Nick Walker, whose description of the neurodiversity paradigm I use frequently, wrote the foreward as well as contributing two essays in his section. Michelle, the editor and writer of the introductions (in addition to a short introduction for the book itself, each contributor gets an introduction,) is an online friend of mine. I know Emily. I am Alyssa, and I think I know myself. Kassiane, who coined the term "neurodivergent" because there's many ways to be neurologically interesting, has been a friend of mine mostly online, and we've met in person three times now. I've read Cynthia's and Sparrow's blogs. I've met Michael, Elizabeth, and Amy at conferences. Morénike I was not able to meet because of transit difficulties, but I was impressed by her distance presentation at Autcom. I don't know Ally or Briannon, but having read their pieces, I intend to look at their blogs now!

Nick Walker puts his metaphorical finger on the source of many issues autistic people face: the world isn't designed for people like us. Assumptions about what thriving means and about how you reach any given ideal of success were made with non-autistic people in mind and don't apply well to us. He reminds us of the "Golden Rule of Neurodiversity," modeled on the Golden Rule of treating others as we would want to be treated: "Respect the bodily, sensory, and cognitive needs of others as you would want your own to be respected, whether or not you understand the reasons for those needs." His words are important for those working with autistic children (or adults) to read, but what stands out most to me is not any broad statement on autism or neurodiversity. It's the title of a mix CD: The Logistic Difference Equation. I think I need to ask for the track list of that CD.

Ally, an autistic parent of autistic children, writes a letter to parents who are just finding out their children are autistic. She writes the letter she would have wanted to read. I love her words, and I love her metaphors. "Being autistic isn't being at a train station, it's being on a train." We learn. We grow. And maybe, just maybe, we ride trains. I ride a lot of trains, because I don't drive (yet.)

Emily tells us just how important it is to tell your kids they're autistic, because they're going to be different whether or not you tell them, and they're going to know they're different whether or not you tell them, and all you can do by hiding the word autism is make it harder to get useful information about how we work. Her essay is important.

Cynthia's got two pieces, one that reads to me like a (much-needed) questioning of the concept of socially appropriate, with stimming as the primary example, and another a specific defense of stimming. As a moderator of the mostly inactive Tumblr,  F, Yeah, Stimming, I am all in favor of stimming.

Kassiane writes about the unreasonable cost of indistinguishability from one's peers, that unattainable and constantly moving target that gets used as a reason that an autistic person must not really need whatever supports they briefly had. The lessons learned alongside therapy's consciously taught one of indistinguishability form unreasonable expectations, and seriously, do not do this to your kids.

Sparrow continues to write about therapy, specifically ABA, touted as the "gold standard" for autism treatment and therefore the label slapped onto as many kinds of therapy as possible, accurately or not. In an extremely useful move, she tells parents what to look out for in order to tell good therapists (meaning the ones who aren't actually doing ABA based therapies even if they're calling it that) from ones who are going to teach children that their bodies aren't really their own and essentially grooming kids for abuse.

Michael writes about the contradictions (and resulting problems) of being perceived as "not that autistic" while actually being ... that autistic. You see, being able to hide certain aspects of our autistic selves is very different from not having those aspects, just as much as it is different from not being able to hide them. She also has a perspective on what it means to be a teacher that is important for professionals as a whole to note: it's not about making her classroom as accessible and inclusive as possible for her, but for her students. If we (who supposedly lack empathy/theory of mind) can figure this out when teaching a mostly neurotypical abled class, well, y'all abled neurotypical teachers have no excuse not to understand this when teaching us.

Elizabeth writes from the perspective of a mother, on how things have improved since she was a child, and then on how she navigates social and sensory overload out in the world. Not "in her own world," but out in everyone else's world.

Briannon speaks to the exclusion she finds being Autistic herself, being queer, and being the mother of autistic children: queerness and autism both mean exclusion from the typical heterosexual mothers groups, disability from the queer groups, autism as identity and queerness both from the typical autism parent groups. So she builds her own space, and will fight to defend it. She speaks to the importance of having such a space, because the rest of the world isn't that space.

Morénike writes about the importance of social media, challenging the idea that it is somehow fake and that getting off social media and going out is more "real" than the interactions that happen online. This piece is not directed exactly at parents, but at people in general, and the anti-social-media backlash in specific. Given the social and sensory overload that Autistic people frequently deal with outside in the "real," world, a challenge to the idea that things online are somehow less real is needed for Autistic people and those supporting us. Offline isn't always accessible.

Amy writes about attitudes. Not so much the attitudes of the disabled person themself, but that of others around us. Attitudes in general, attitudes towards our communication (when does it get to be seen as real?), attitudes about our value as people and how it is tied to a system of grading people as more or less similar to able people. Given how much the attitudes of people around us show in the supports we do (or don't) get, and in the expectations for our educations and lives, attitudes seems a good way to close out the book.

Every essay was great. Every essay said important things, without much in the way of duplication, but with connections between some essays. I definitely get why Michelle chose the pieces she did, and I am glad all the contributing authors said yes to this use of their work. Seriously, my TL;DR: version of the review would be "Go get the book now."

1 comment:

  1. These all make sense. Thanks you for taking time doing the review.I am very interested with the book now after reading your reviews.

    ReplyDelete

I reserve the right to delete for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things. As long as we stay within those ranges, discussion is AWESOME.