Sunday, May 7, 2017

Why Everyone Should Read The ABCs of Autism Acceptance

Patricia George
www.persnicketypatricia.ca

image: Book cover, with white text reading "The ABCs of Autism Acceptance" on a background of multicolored representations of letters of the Roman alphabet, above black text on a white background, reading, "by Sparrow Rose Jones."
The ABCs of Autism Acceptance
[image: Book cover, with white text reading
"The ABCs of Autism Acceptance" on a
background of multicolored representations
of letters of the Roman alphabet,
above black text on a white background,
reading, "by Sparrow Rose Jones."]
I’ve been an avid reader my whole life, so when I was asked to review The ABCs of Autism Acceptance by Sparrow M. Rose, and saw that it was "only" 152 pages, I thought, "this won't take long to read, so sure, I'd love to!"



I was wrong. This is the largest 152-page book I've ever read. In fact, I wrote more notes for this book than I did for a 500-plus page book I reviewed in 2015.



The book's title is straight-forward: Sparrow uses the Roman alphabet as a way to educate the reader about autism acceptance from an autistic person’s point of view, while interlacing quotes and links from other Autistics. The resulting resource makes this book an invaluable asset to furthering Autistic acceptance.


The ABCs of Autism Acceptance started out as a self-challenge for the author during the controversial month of April. I remember the post in which Sparrow began discussing this undertaking. I also remember thinking, what a fantastic idea! It was time to take April back and show why, without acceptance, autism awareness is actually a huge disservice to autistic people. 



Sparrow also aimed to make this book relatable to a diverse audience. Something a fellow Autistic could read, but so could our siblings, our teachers, our doctors, our friends ... and other people too. Especially people well outside our ally circle. We need them all!


As I looked over my sixteen pages of notes, I tried to think of a direction to take this. My pattern recognition noticed certain words appeared over and over again: 'acceptance,' 'dignity,' 'respect,' and 'Autistic.' And I noticed my notes had certain quotes from the book that I circled and underlined, with  exclamation points. I want to share how those quotes make me feel as an Autistic person. (Props to the book for helping me feel more confident about capitalizing 'Autistic.')  



“Autism acceptance is seeing us as whole, complete human beings worthy of respect.” (pg. 13)



Everyone needs to read and absorb that sentence. Autistic people are not broken versions of our normal selves. Living life feeling that way is an early death sentence. I feel like this needs to be the benchmark for how we're treated. If you're not seeing us this way then you have some work to do.

“Do not expect us to harm ourselves in order for you to feel as if we care for you. Respect our ways of being, our ways of knowing, our ways of loving.” (pg. 42)



Coming into being autistic later in life means I've struggled with just how much love has come to mean pain for me, in one way or another. And I don't mean things like heartbreak, from the loss of some one/thing/place.

When I write "love has come to mean pain for me," I'm remembering all the times I took on the weight and overload of a person/place/thing, etc., and it ended up costing me self-respect and dignity. I struggle 'til this very day with a choir of ghosts-of-the-past in my head, singing “everyone hates you."

Autism awareness does absolutely nothing to fix these kinds of crises for autistic people. "Awareness" would like you to think the crisis is us, and the increase in autism diagnoses. But the crisis is really what's not happening for us.

“ ... above all we need autism acceptance because we will never get our healthcare needs met until we are fully recognized as deserving of respect and dignity, and until we are widely understood as valuable not for what we can do, but for who we are.” (pg. 59)



I went a decade, my entire 30's, without a doctor. Various medical professionals still don't take my over- and under- reactions to medications seriously. Just last week, I was totally shut down by a doctor because I said there was a link between Ehlers-Danlos syndrome and Autism, and the doctor took umbrage with that. 

I knew autistics had trouble being taken seriously by medical professionals before I read Sparrow's book, but now I've confirmed that I am not alone in experiences like these. Autism "awareness" fails us Autistics, time and time again.

“Awareness without acceptance is fear. Fear of autism hurts Autistics. A culture of fear leads to murder.” (pg. 76)



This really hit me hard. One of the most sobering things I've ever experienced in my life was the reading of the names of people with disabilities who had been murdered by their parents—at the time 70 people in five years—for the 2015 Disability Day of Mourning. I read a poem from a past submission of another autistic poet. I participated online.


The number of autistic and disabled people killed grows, and doesn't slow. Awareness isn't making this horror any better. Awareness get murdering parents put on TV, and people somehow rationalizing parents' killings of their disabled children. This is why acceptance is desperately needed. It will save Autistic people’s lives!



“When a person pushes me to overload, especially when they over-ride my protests to do so, I experience a massive loss of trust for that person.” (pg. 91)

Having someone push me to overload after they've been educated about, and agreed to, the boundaries I put in place to help me with things like trust—that is something I really can't take any longer. I pay such a huge personal price. That relationship doesn't stand much of a chance, not without big changes on their part.



I feel like I lose my dignity when I melt down, even though I know it's not my fault. If the person pushing me past my boundaries into a meltdown was able to see me through a lens of acceptance, would they still act that way, still insist on hurting me? I doubt it.

I deserve to maintain my dignity. It's so hard to have it stolen away. 

And besides, we Autistics are pretty loyal people. Why wouldn't you want our trust?

“When comparing myself to all women, I feel lost and alien. When comparing myself to Autistic women, I feel a sense of belonging.” (pg. 134) 



Awareness would make you believe Autistic women couldn't possibly even get along. And awareness still tries to erase us with outdated statistics. But I, and countless other Autistic women, will tell you a very different story.



I was recently on a women's panel at an autism conference, with two Autistic women in our 40's, and two in their 20's. We were all so different—but our commonalities were so powerfully connecting that our differences became things to celebrate. We don't just need acceptance from society, we also need to accept ourselves, and it is imperative to have reflections of ourselves,  to allow that to happen.

I ended up reading and writing this review in April, and took The ABCs of Autism Acceptance many places with me: It went to a lunch where an Autistic woman close to my age saw herself reflected back as turned the pages, which made her light up. I took it to my doctor's office and she said she'd like to read it.



It's important to get to know this book. Sparrow has, in my opinion, succeeded in what he set out to do: create something that a diverse audience could read and learn from. I came away with so much new knowledge and validation, and a desire to learn more.



I'll leave the last words to the author; powerful words that when turned into action can make autism acceptance truly possible:



“Cherish our yes, respect our no.” (pg. 135)


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Note: All page numbers are from the paperback version of the book.