Read These
Every once in a while someone contacts me looking for resources for their newly diagnosed kids. Daniel and I have kept an Apple Note for the past couple of years with resources we shared, especially at the beginning, but I’m adding to it some of my favorite resources over time, so I'm happy to share. These aren’t your usual resources - they’re resources that get to the heart of disability justice, being autistic-centering, parenting in a decolonized way because ableism, understanding systemic ableism, and lifting up voices of the most marginalized.
Starting out
ASAN Start Here guide. I love this guide and it was great for us AND to give the grandparents.
Neuroqueer Heresies by Nick Walker which is a series of short essays.
Unsettling Languages, Unruly Bodyminds: A crip linguistics manifesto - I cannot emphasize enough how in love I am with this article and how I wish THIS was the first thing we were given at diagnosis. What it means to crip language, and how to support our kid in that framework.
Playing, learning, and growing (as a whole family)
As we decided NOT to do lots of therapies, a "special ed" school, etc, we felt like we were the only parents of a kid with high-support-needs making this choice, and this blog compilation REALLY helped us realize we weren't alone
How to play with your autistic child by Terra Vance of NeuroClastic. I love this article SO MUCH. Not because it changed my perspective, but because it validated that it's not us with the problem.
This article by Julia Bascom about "functional play" was essential for us - with a kid who does almost NO typical play but does so much play.
Another article by Terra Vance on "so then what"? There are many such articles, but I share this one because it focuses on kids with higher support needs, who I find get left out of a lot of other discussions (leaving me questioning my parenting decisions) -
I think, to the question of "well then what?", a critical aspect of our parenting has been learning about Ross Greene and CPS. Here is a great article by Zaidee Martin about this methodology with disabled families and the Facebook group.
The whole podcast Learn Play Thrive
Also, early on, we did a short training for OTs on the Learn Play Thrive website (I think this is the equivalent kind of course) and it was really helpful for us to understand the disconnect between what professionals were telling us, and what we were noticing.
Trust Kids is a compilation of essays that have to do with parenting from a place of trusting your kids. We unschool A-, and many essays here have to do with unschooling, but it’s not just a book about that (I decided to leave unschooling-specific out of this list because that’s a whole other list on its own!).
Autism: Sensory-Movement Differences and Diversity - This book is older, and therefore isn’t perfect and uses some older-language, but I found it incredibly helpful as I struggled with “why does the broader online autism community seem to ignore Dyspraxia and Apraxia…and what does that even mean and does it even apply to our kid?” It was really helpful to frame Autism alongside Tourettes and Parkinsons. And it felt like THE ANTIDOTE to everyone being like “have him jump on a trampoline” - going into what “accommodations” truly look like and how an accommodation that works for one person may not work for another at all!
Opening our eyes to systems
This TED Talk asking what is the impact of assessments, systems, and bureaucracy, on the self esteem of disabled kids? I want to be best friends with this dad.
This article about the act of dehumanizing a disabled child to get them services, and the alternative being recognizing that all people need help.
Raising a Rare Girl by Heather Lanier - I hate the title of this book but it is SUCH a good book. It should be required reading by all parents, period. It’s a person’s view into their own intimate journey with their own ableism as they encountered systems encountering their disabled kid. If you, like me, have never experienced grief around your kid’s diagnosis still read this book. Her husband is a Buddhist monk who offers a counter narrative throughout her anxiety, and he makes this book work for anyone. While I didn’t see myself in her, I saw myself in him, and I saw the systems and the realization of disabled systems through her eyes.
Centering non-speaking identity as a way of being
Unsettling Languages, Unruly Bodyminds: A crip linguistics manifesto - I cannot emphasize enough how in love I am with this article and how I wish THIS was the first thing we were given at diagnosis. What it means to crip language, and how to support our kid in that framework.
Deej, the movie, by a non-speaking autistic person (and poet) about his experience in inclusive school
Disrupting the Garden Walls - a thought provoking piece about AAC and non-speaking communication by Deej
An amazing essay Up in the Clouds and Down in the Valley: My Richness and Yours by mel baggs about language and patterns that really helped my understanding!
A video called S/Pace by a non-speaking autistic person (and their parent) about the poetry he sees in the world
An interview between the Thinking Person's Guide to Autism and Dr. Jaswal about non-speaking right to communicate specifically, and his research on communication including facilitated communication
May Tomorrow Be Awake: On Poetry, Autism, and our Neurodiverse Future by Chris Martin. I cannot say enough good things about this book. It was the first book I really saw A- reflected in (and my partner, and even me). It’s the first book I’ve read about non-speaking autistic people that was incredibly intertwined with justice - race, gender, sexuality, capitalism, Audre Lorde, disability justice principles. It’s all in there - and not as an aside, but because that is the truth lived by the non-speaking poets featured in this book.
The Explicit Literary Journal showcasing the visual art and writing of non-speaking and semi-speaking disabled artists.
Gestalt Language Processing (GLP)
If you don't already know about Gestalt Language processing you MUST learn about it. It's incredibly important to be informed about this type of language processing which is common for autistic kids.
Podcast episode on Learn Play Thrive that offers a 101
A 101 description that I made (I'm not a speech therapist!) specifically describing GLPs for non-speaking and minimally speaking kids
Marge Blanc (one of the top people studying GLP)’s website Communication Development Center with free videos
Ableism, Disability Justice
THE Disability Justice Primer, Skin Tooth and Bones
A podcast episode on the anti-Black pinnings of ableism with Dustin Gibson
My body doesn’t oppress me, society does - a 5 minute video with some of the original Disability Justice folks Stacey Milbern and Patty Bernes succinctly explaining disability as a social construct, while still not brushing over the idea of impairements or chronic pain and how that fits in.
The book "We Move Together" is my FAVORITE kids / adult book on Disability Justice. This isn't about Disability Rights. This isn't about Disabled people exist. This is about Disability justice and A's ancestors from the present, past and future.
I need time. This is about accessibility. By mel baggs
Nonspeakers and cognitive disability: none are free until all are free. - an important essay by a non-speaking autistic people on how they see the harm when autistic folks try to distance themselves from intellectually disabled people
My Grandmother’s Hands by Resmaa Menakem is about racism and how it impacts all people, of all races, down to our bodies, along with actual exercises and meditations to get at the body-impact of racism. And while this doesn’t seem like it’s about ableism, if we as a society can learn to lean into the deep discomfort and physical trauma caused to us by racism, ableism, and other systemic injustices, it is critical to reshaping our relationship to our disabled loved ones, ourselves, and community at large.
How to Tell When We Will Die: On Pain, Disability, and Doom - an incredible, incredible book by the author of the Sick Woman Theory. I’d say this book is on movements, a liberated freedom, disability, the super complex messiness of disability. After all the work I’ve put in about A-, it’s shining a really clear, direct, light on the ableism that I hold not so deep inside me.
Being, belonging
A lot of what keeps me grounded as a parent is realizing A-'s identity, and realizing that he has a community and a right to that community, regardless of whether that community is accessible to him right now.
Sebene Selassie's book You Belong is an amazing grounding book for me for A-, and for myself
As well as Leah Lakshmi Piepzna-Samarasinha's book Care Work
I'm going to include my own zine - That Was Fun But Now We’re Done - reflections on the first year of A's diagnosis and the juxtaposition of dealing with systems vs his joy. It's about 6 links down.
Ode to Every Black Boy - a beautiful chapbook by Lonnie Shaw, a disabled, intellectually disabled, poet.
Educational Inclusion
Lastly, Inclusion is a WHOLE other thing so I won't share too much about that.
But this was the first podcast episode I heard of Think Inclusive, about inclusion, featuring an interview with early childhood education Jani Kozlowski. It made me cry. Once you hear about inclusion, I think it's impossible to go back.
And the incredible Shelley Moore explaining in under 4 minutes why my son needs to be centered not outcasted, and everyone benefits.
This research paper on two districts in the US who practice full inclusion. Skip ahead to "Findings". I've never had a research paper make me cry before.
Want more on inclusion? Check out the podcast notes from the episode Joyner Emerick and I were on, and this Google doc I made with inclusion resources.