The all-new Theory of Mind: what parents need to understand about growing up autistic
by LucyMB
By Lucy Berrington
Aspergerians and other autistic people are under relentless pressure to try to see the world as neurotypicals do. There hasn’t been much emphasis on neurotypicals understanding and sharing the autistic perspective — but this is essential for peaceful, supportive co-existence.
School’s out for my friends’ teen son, camps haven’t begun, and these unstructured days are making the family crazy. When I hung out with the parents last weekend, they were crushed by their son’s behavioral collapse (“Good morning, ***holes!”) and his obsession with a certain TV show. Over three beautiful summer days, they hadn’t been able to get him out of the house.
Although this young man doesn’t have an autism diagnosis, his parents realize he probably qualifies. So, they are wondering, to what extent is it beneficial (or otherwise) to hold him to conventional expectations? Did his TV compulsion, which looked to them like a brutal waste of a sunny day/summer/life, have any hidden value? Should they leverage his obsession so as to diversify his portfolio of summer activities (no Survivor till you’ve frolicked in the sprinklers)? How should they handle this – and ten years from now, what will their son say of their strategy?
Like so many parenting dilemmas, this one comes back to wrapping our minds around the perspectives and behaviors of our kids. So I asked a bunch of autistic self-advocates to recommend blog posts and other readings that capture their experiences growing up and what they wish their parents had known or understood. What follows is the first round of suggestions, and it’s an wild mix of length and brevity, humor and solemnity, passion and protest, and differing formats. This list is not even close to being definitive – and neither does it explicitly address my friends’ dilemma about their son, although I’m confident it can help them them get to the answer.
Please use Comments to elaborate, pass judgment or add your own recommendations. I’m especially interested in readings on understanding rigidity in autistic people.
Don’t Mourn for Us by Jim Sinclair
This piece, from 1993, deservedly has classic status. It’s based on a presentation to the International Conference on Autism in Toronto, and is addressed primarily to parents. “I invite you to look at our autism, and look at your grief, from our perspective… The ways we relate are different. … But it can be done—unless non-autistic people are far more limited than we are in their capacity to relate.”
The Obsessive Joy of Autism by Julia Bascom
Julia blogs at Just Stimming and LOVE-NOS. In this essay, from 2011, she infectiously captures the happiness that comes from her obsessions (Glee and Sodoku) and hand flapping. “All of these things autistic people are supposed to be ashamed of and stop doing? They are how we communicate our joy.” Julia spearheads The Loud Hands Project, a transmedia publishing and creative effort by the Autistic Self Advocacy Network. Also check out her piece Quiet Hands.
There’s Something Wrong with You by Lydia Brown
Lydia Brown, an undergrad at Georgetown University, is among the most prolific of autistic self-advocates. She blogs at Autistic Hoya. This post, from January 2012, laments the perception of autism as a collection of deficits, and the interventions aimed not at enhancing the opportunities of autistic people but at eliminating behaviors that make neurotypicals uncomfortable. “Autistic children need to know that they are different, but that different doesn’t mean bad. Autistic children need to know that being Autistic means being disabled, but that disability doesn’t mean inability to live fully or happily.”
The Shortlist by Shain Neumeier
Okay, so this is a Facebook comment, not a blog post. In response to my query, Shain, a researcher at Suffolk University Law School, Boston, banged out a succinct list of essential points for parents. Here they are:
- Sensory integration problems are a real thing, and pretending that they’re not or trying to force someone to get over them can cause worse problems than if you just accepted them.
- Treating all social rules as equal, whether it’s where you hold your fork or how you treat other people, and insisting on perfect adherence to all of them at all times is frustrating and can lead to someone giving up on even the important ones.
- Special interests are important and can be useful to a person if channeled in the right way. Attacking a person’s special interest (or their access to it) is pretty much the same as attacking the person themselves.
- Being miserable because people screw with you for being weird isn’t the same as being miserable because you’re weird, and you can’t medicate away isolation and bullying problems.
- Strange or difficult behavior isn’t inexplicable or just for the purposes of embarrassing neurotypicals, but has a purpose or an explanation if you’d ever take the time to ask or figure it out.
Sick Days by Aspie Rhetor
In this brief and startling post, the writer describes how her autism in childhood was regarded as a spiritual sickness. Implicit in her staccato style is the trauma of trying to make sense of others’ cruelly misguided attempts to make sense of her – a reminder that the most disabling aspect of disability is the false assumptions that surround it. “It’s always a spiritual attack, repeats the pastor … I am seven. I am gasping. I am sinking. I am fighting the hands, the godly hands, the demonic hands, the hands that pry and shriek and grieve against my face. I am dead, but I am not dead.”
Parallel Play by Tim Page
This 2007 New Yorker article by Tim Page, a leading music critic, became the first chapter of his memoir (same title). It describes his teachers’ bewilderment at their inability to channel his obvious intelligence into traditional academic achievement. “From early childhood, my memory was so acute and my wit so bleak that I was described as a genius—by my parents, by our neighbors, and even, on occasion, by the same teachers who gave me failing marks.” Check out the contrast between his delightful but unconventional report on a school field trip and his early music reviews. If you can’t access to the article, which might require a subscription, read Parallel Play (Doubleday, 2009) at the AANE offices.
Square and Round by Matt
Matt is an Aspergerian cartoonist and writer who blogs at Dude, I’m an Aspie. This poem is from April 2012. “Square, you’re rough around the edges. / Round rolls with everything that comes his way. / Not to put you down, / For not bein’ Round. / You’ve got too many sides there, Square. Just sayin’.” Also take a look at Cartoon Beginnings (December 2010) –another creative response to his struggles around identity and (non)conformity in childhood.
Scholars with Autism Achieving Dreams (Auricle Ink Pub, 2012), autobiographical essays by eight autistic adults including Temple Grandin, Lars Perner, Stephen Mark Shore, Dawn Eddings Prince and Nick Walker. I haven’t read this (yet), and I join Nick Walker in lamenting the tedious title, but these are excellent writers with no shortage of experience and insight. All of them, as Nick puts it, have “done well in life according to the dubious standards of neurotypical society (i.e., graduate degrees, prestigious-sounding employment, and other easily quantifiable achievements).” The essays provide childhood perspectives on autism and an emphasis on parents’ and teachers’ responses, helpful and otherwise.
The Uncharted Path (RCR, 2010) by Rachel Cohen-Rottenberg
Again, highly recommended by many, and on my To Read list. Rachel is an autistic writer and academic in Vermont. This is the first of her memoirs, and contains a chapter on her childhood and adolescence, along with information on sensory overload, “thinking in text,” and other autistic traits. Rachel’s fabulous blogs, which include Journeys with Autism and Autism and Empathy, are well worth exploring.
So — what have I missed?
June 14, 2012
Posted in: AS Community & Culture, AS Information & Support, Accomplished Aspergerians, Advocacy, Life, Parents, Parents and family, Testimonials, Uncategorized
3 Comments
3 Responses
Thanks for posting links to all the stories! My 9 yr old wants to write a book about what it’s like to have Asperger’s.
Liz, would your 9-yr-old consider blogging for us? He/she could start with a brief story or anecdote — an example of what it’s like to have AS. lucyberrington@rcn.com
Thank you so much for this posting. I worry everyday about diluting the very special qualities my sons’ have in a effort to make them accepted in the NT. I will certainly be reading many of these selections in hopes of better understanding my sons and what THEY need.
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