autism acceptance month

autistic #ownvoices fiction: the boy who steals houses by c. g. drews

Posted on 2020-04-192020-04-06 by kristinabean

Title: The Boy Who Steals Houses
Author: C. G. Drews
Date of Publication: April 2019
Rating: 4.5 out of 5 stars

So I have to admit that I have a not-so-secret love of angst, longing, and heartbreak in the books I read. Every time I read a story of someone searching for family, home, acceptance, love, etc., and especially of working through the challenges of trusting in those things when they show up, it hurts my heart in such a hopeful way. I remember back in high school telling my dad that I just wanted to feel like I belonged somewhere – like there was someplace where I could be completely exposed and still be completely accepted – and I think it must be a fairly common human desire because so many books touch on it. In The Boy Who Steals Houses, C. G. Drews beautifully describes both that longing and the thing itself: the desire to be loved unconditionally, and the shapes that unconditional love can take in very imperfect people and circumstances.

I can’t think of another book I’ve read that looks at autism from the outside (the main character, Sam is not expressly autistic – his brother Avery is) with such tenderness and acceptance. Sam gets frustrated with Avery and Avery gets frustrated with Sam, like any two siblings, but they love each other so fiercely, so intensely, with such mutual protectiveness. Sam tries to protect his big brother from a world that doesn’t accept or even care to understand his autism; Avery tries to protect Sam from his own anger and from the justice system. Avery stims; Avery gets overwhelmed; Avery has meltdowns and has to be rescued and pulls Sam in to the lowlife world he’s ended up in; and through it all Sam just loves and loves and loves him – and Avery loves him back. At the beginning of the book, since it’s told through Sam’s perspective, most of the narrative is showing Sam’s love and care for Avery; by the end of the book (letting the reader realize it along with Sam, I believe) the narrative shows also how Avery has always been there for Sam loving and caring for him as best he could, through all the bad decisions they’ve both made and all the bad things that have been done to them.

But Sam is really the heart of this book, with his anxieties and his desperate longing for home and family and acceptance and belonging and love. I was instantly drawn in to his story; I’ve read it twice already and will probably read it again since I can’t get him out of mind (and since Drews ended on what was essentially a cliffhanger!). To be seen and known and loved no matter what – that is the treasure Sam is searching for, and the book holds out hope that he may finally find it.

The only reason I’m not giving the book 5 stars is that the writing was a bit over-dramatic at times. Sometimes the stylistic effects really contributed to feeling the characters’ emotions; other times they seemed over the top (but that may just be due to my own intense discomfort at overtly expressed emotion). Oh, and the ending 🙂 If only a sequel were forthcoming!

C. G. Drews has written one other book, A Thousand Perfect Notes, which I have not read (I’m still too caught up in the lives of these characters to move on!). She just posted a Q&A post celebrating the one-year anniversary of The Boy Who Steals Houses that is great in itself and also links to an article she wrote about writing #ownvoices fiction and autistic representation in fiction specifically, which I found to be quite good.

autistic #ownvoices fiction: planet earth is blue by nicole panteleakos

Posted on 2020-04-072020-04-03 by kristinabean

Title: Planet Earth Is Blue
Author: Nicole Panteleakos
Date of Publication: May 2019
Rating: 5 out of 5 stars

I wasn’t sure what to expect when I began reading Planet Earth Is Blue, the story of a largely nonverbal autistic tween in foster care. I was apprehensive about stereotypes, afraid that situations would be overblown, worried that the book would be poorly written (when I have high hopes for a story, I also tend to have a lot of nervousness about it!). But what I found was an deeply moving story of a girl navigating a difficult time of life, seeking stability in an unstable environment, struggling to communicate, and learning about the kind of love that sees the beloved for who they truly are and fights to help others see and understand them as well.

I read it all in one day, in 5-10 minute snatches as I worked, going so far as to set up my phone on the lab bench to catch the next sentence in between pipettes. (This is not recommended best practice for either lab science or book enjoyment. I just couldn’t put it down.) I cried at least three times and was very thankful my coworker happened to be on the other side of the lab. And at the end, through all the hurt and misunderstandings, there was hope (which I think is particularly important as this book is aimed at the 11-14 year old age group, and when kids that age find a character they identify with they need to know that there is hope for kids like them even when life is hard).

The story begins with our protagonist, Nova Vezina, waking up in the home of her new foster family, having run away from her previous home with her older sister, and missing said sister profoundly. As the story alternates between third person descriptions – often including flashbacks and memories triggered by events in the primary narrative timeline – and first person letters written by Nova to her sister, powerful messages about ableism, humanity, family, and love come to life on the page. Early in the book, for instance, Nova writes,

"I know you always say 'Foster families are not forever families' and 'We should not get attached,' but I think you might like Francine. She talks to me the way people talk to you. Not too loud and too slow, the way they talk to me.

"She talks like I am a person."

Throughout the book, Nova’s feelings, sensory processing, and behaviors – the things that bother her, the things she gets excited about, the stimuli that overwhelm her, her physical expression of all these things – are presented authentically and seriously. They are just as real as any “normal” character’s emotions would be in any other book, and just as deeply important to her. Instead of fitting into the constraints of a stereotype, Nova appears the way a real person does: emotionally complex, internally conflicted about herself and her situation, and passionate about the things and people she loves. We can feel her joy rising like a rocket when she gets to experience the planetarium for the first time, or the deep pit of anxiety when she breaks a toy bound up with personal meaning. The slow buildup of sensory and emotional overwhelm are both portrayed with not only technical accuracy but a style that places the reader in the moment with Nova, seeing and experiencing life from her perspective. And her perspective is never cheapened or flattened.

Nicole Panteleakos drew on great depths of experience with autism to write Nova’s character; diagnosed with autism and OCD herself as an adult, she also worked for years teaching creative writing and communication to autistic kids with limited speech and volunteered with autistic children in various programs and through foster respite care. Additionally, she had multiple autistic tweens and adults read through her drafts to help ensure Nova wouldn’t fall into stereotypes or caricatures. Her exposure to the breadth of the autism spectrum as well as her personal insider’s understanding of it enabled her, I believe, to craft a genuinely human autistic protagonist, unlike any I have encountered from a neurotypical author.

Panteleakos’s Author’s Note at the end of the book also deserves a special mention, being everything I always loved about author’s notes when I was in the target age group for this book (and still love today, to be honest). However, you’ll have to read the story first and discover this on your own 🙂 But with a character like Nova, and with all she gets to experience of unconditional love and belonging as she works to process and overcome not her disability but the challenges of her circumstances, there are countless other reasons to read this book, and no reasons to wait.

As far as I know this is Panteleakos’s first book – I hope she writes more in the future! She does have an excellent article about writing Planet Earth Is Blue that touches on some of the experiences that influenced the book as well as the value of autistic representation in fiction.

autism acceptance month, sqt

{sqt} – autistic #ownvoices fiction

Posted on 2020-04-03 by kristinabean

In the midst of all the covid-19 craziness, life goes on. It’s still Lent, for about another week, and there will still be Easter, and it’s still Autism Acceptance Month now that it’s April! This year, my focus will be on books of fiction written by and/or containing autistic main characters.

Why fiction? There are a lot of good memoirs written by autistic individuals, and non-fiction books addressing autism, but fiction in particular taps into the imagination and vision of the reader. It opens up new perspectives and potentials, allowing the reader to enter into new worlds, relationships, and experiences. So for the neurotypical reader, encountering autistic characters in fiction (assuming they are well-written!) can make autism understandable, relatable, and more human, which will then hopefully translate to the real world. For the autistic reader, those characters can give them people to identify with when they may be surrounded by neurotypical society in real life and in most books.

Another advantage of fiction is that it is more likely to be read by people who aren’t interested specifically in autism – at least not enough to seek out a non-fiction book on the topic – but who are looking for a good story to immerse themselves in. In this way, books with autistic characters can help bring awareness and acceptance of autism to a more mainstream audience.

It’s not so helpful, however, to read fiction with autistic characters if those characters are stereotyped, flat, or defined by their atypical behaviors rather than shown authentically as human beings with complex internal lives and emotional ranges. For that reason, fiction written by autistic authors is particularly valuable, as these authors tend to have more reliable insight into the processing and perspective of autistic characters than neurotypical authors have. It is possible for non-autistic authors to write autistic characters well, of course, and I think it’s important for fiction writers to try to write from a variety of perspectives, but in my experience autistic characters written by autistic authors are much more accurate to life and multi-dimensional.

For those reasons, most of the books I’ll be reviewing this month are #ownvoices autistic fiction – books with an autistic protagonist or important secondary character written by an autistic author – and the exceptions will fit into either one or the other of those categories. I’ve written three reviews already, I’ve read two more books that I need to write up, and I have 2-3 more in reserve – but if you have any suggestions of books you’ve loved or that sound interesting, please let me know! It was difficult to find books in this category and so I’d love to be able to put together a more comprehensive list by the end of the month.

I’m linking up with Kelly again this week – head over and check out the rest of the linkup!

autism acceptance month

autistic inertia

Posted on 2019-04-102019-04-09 by kristinabean

This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!

Ever since I took physics and learned the word “inertia”, I’ve used it in an off-label manner to describe my own difficulties in beginning an activity, changing to a new activity, or stopping an activity that I’m interested in. I have a lot of inertia, I’ll say, so it’s hard for me to get started with something, especially if it isn’t something I have a lot of motivation to do (like cleaning the bathrooms!). Or: I am mentally like a very heavy ball rolling along and it can therefore be hard to stop my brain from pursuing its direction of interest (for instance, obsessive reading at the expense of all other good things like sleep). Then there is the emotional inertia: once I am angry at someone or about something, it is incredibly difficult to stop feeling that way – but once I am close to and grow to trust someone, it is equally difficult to damage my respect for and loyalty to them.

It always seemed to me that most people didn’t have quite so much trouble getting started on disagreeable-but-necessary tasks, or have to race to recalibrate to avoid panicking when plans abruptly change, or get stuck on one particular thing for quite so long. For example, no matter how far in advance I prepare for something, I am always struggling to finish it right as the deadline approaches – I just keep merrily going along in one step of the process and suddenly realize with horror I’m almost out of time to do any subsequent steps! Or I’ll set phone reminders and ask my husband to text me and think about it every day and still manage to “forget” to make a necessary phone call for weeks, because I don’t have the mental ability to initiate an activity I dislike without some type of urgent motivation (again with the dirty bathrooms…). Or I’ll find myself unable to read anything other than the one book I’m currently absorbed in, so I’ll just read it over and over and over again until the hunger for it finally abates (I read Lord of the Rings over twenty times when I was 18-20 years old, as a reference point for this. I just could not move on. And that was hardly a unique situation…)

A few years ago I tried looking up this concept online to see if anyone else had similar struggles, and to my great surprise I found that other people had noticed the same phenomenon and even given it the same name! There is something very reassuring about not being odd and not-quite-right all by oneself. From what I can tell, this inertia is related to several executive functions that can be impaired in autism, and is related to more commonly-referenced autistic behaviors such as rigidity, adherence to routine, discomfort with transitions, and perseveration. It is not due to laziness or stupidity; it’s just a result of the way the autistic brain is wired. And that is certainly a relief to hear when someone has spent years berating themselves because they’ve tried to change and couldn’t – and it also provides the accuracy of understanding necessary to design helpful solutions to the inertia problem. For example, no matter how many times I tell myself I need to get my lazy self in gear and clean the bathrooms, it isn’t going to happen and I’m going to be swamped in guilt and struggle to do anything else either – but if I tell myself something like, I’m in here anyway supervising a bath so how about I just wipe things down and see how much I can get done, I can usually get it taken care of and then have the glow of having conquered a difficult obstacle to build off of.

Anna Sullivan’s handout on inertia from Autreat 2012 is the most comprehensive description I’ve found of inertia, and takes the time to break down why it is in fact different from laziness or poor decision-making, and how it is possible for someone to not do something they actually want to do (personally, I have now or have had in the past significant challenges with four of her examples: I cannot make arbitrary choices, I used to struggle a lot with breaking a large task into smaller pieces, I cannot put myself into a desired mode of operation on demand, and I find it very difficult to move from a low-energy to a high-energy state). Reading through her list of practical tips was insightful as well – although I’ve stumbled upon a lot of those strategies myself, having them articulated objectively makes it easier to remember and practice them in the future. (If you click through to the article, note that the abbreviation AC refers to “Autistic and Cousins”, including other neurodivergent groups and individuals in the discussion).

Are you an inertial person? How does it affect your day-to-day life?

autism acceptance month, information, links

Posted on 2019-04-022019-04-25 by kristinabean

Each April is Autism Acceptance Month.

Not, as some groups would put it, Autism Awareness Month. It’s a different perspective, because it’s coming from a different place. The autism awareness campaigns – like the Light It Up Blue campaign from the notorious organization Autism Speaks – tend to originate from medical professionals and non-autistic parents, people who see autism primarily as a disorder that merits pity and needs to be cured. The autism acceptance campaign, on the other hand, originates with autistic self-advocates (specifically the Autistic Self-Advocacy Network): people who understand autism to be a difference rather than a disorder – a difference that gives to us even as it makes certain things more challenging, and a difference that shapes our identities. To those who advocate for acceptance, considering autism to be a disorder and trying to eliminate it feels like a personal offense.

We are here, say the autistic self-advocates, we are autistic, and we have the same rights and humanity as everyone else. Stop trying to make the way we think and feel and act mirror yours; our autistic personhood is just as valid as your neurotypical personhood.

AAMwordcloud3 — autism acceptance word cloud from the autism acceptance month website

This year, for the month of April, I have two major goals. First, I am going to spend the month writing about autism from the perspective of neurodiversity and acceptance, both as a (probable/self-diagnosed) autistic adult and as the parent of an autistic child. Second, I am going to pursue an official medical diagnosis for myself (although all the evaluations are in April, I won’t have the final word until May, unfortunately). I hope that you will join me on this journey – that together we can learn more about neurodivergence and how it affects individuals and society, and find ways to accept and love the differences in ourselves and those around us.

I highly, highly recommend that anyone wanting to learn more about autism focus on information from autistic people. Otherwise, it’s as if you’re trying to learn about the African-American cultural experience from a bunch of white authors, or trying to figure out what it feels like to be queer from the observations of the straight/cis community. Non-autistic professionals can give you an understanding of the history of the diagnosis, or the medical definition of the diagnosis, but they cannot tell you what it is like to live as an autistic person. They simply don’t have that inside understanding.

To get you started, here are some of my favorite #actuallyautistic internet presences (some of them are more than just blogs!), in no particular order:

Autistic Not Weird, by Chris Bonnello
- I’ve been following ANW for a long time now, since back when it was simply a blog. Chris Bonnello has a great sense of humor, a lot of stories to share, and an accessible way of explaining technical information. This was one of the first blogs I read that was written by an autistic adult, and finding that I could identify with almost everything he wrote pushed me forward in my own path of self-discovery. The ANW community on Facebook is one of the most inclusive I’ve run across, with autistic individuals and their families asking and answering practical questions honestly and kindly.
Suburban Autistics, by Ally Grace
- I found this blog by searching for gentle parenting tips, actually! Ally Grace and several of her children are autistic, and she writes about parenting in a gentle, accepting, positive way. I am always both inspired and challenged to be a kinder, more compassionate person and parent when I read her work – and to give myself a touch more grace in my own struggles as well. If you are on Facebook, I believe she is a bit more active there than on the blog.
Neurocosmopolitanism, by Nick Walker
- I don’t think this blog is active anymore, but it is foundational in my understanding of neurodivergence. I would quote liberally from his articles except that once I start, it’s hard to stop! So just go and read them in full. Start with Throw Away the Master’s Tools if you really want to understand the mindset behind acceptance as opposed to awareness.
The Girl with the Curly Hair, by Alis Rowe
- This is significantly more than a blog; it is a compendium of resources, especially for autistic women. Honestly, my main interaction with this site has been mediated through Pinterest, where I’ve found so many quotes – accompanied by the curly-haired girl illustration herself that – resonate with me on a deep level. (In the following quote, keep in mind that in the US the diagnosis of Asperger’s Syndrome has been deprecated and replaced by an autism diagnosis.)

alisrowequote — Quote: ‘Women with Asperger’s Syndrome may be both brilliantly strange and strangely brilliant! We are genuine, truthful, thoughtful and interesting… with unusual problem-solving skills and out of the box thinking styles. We tend to have volatile emotions, quirks, interesting mannerisms and we tend to feel most comfortable and relaxed when we are on our own.’

So for World Autism Awareness Day today, let’s start looking at autism from the perspective of difference rather than disorder, and seek to understand it from the inside out! My challenge for you is to pick one of the websites I shared above and read at least one article from it 🙂 I’d love to hear what you read and anything from it that stood out to you!

all posts in the april autism series will link here after they’re published!