May 2021

 The Line Between Autistic Obsession and Expertise

-and-

An Autism Mom’s Put-the-phone-down Moment

This month I turn the newsletter over to readers like you for

• Words Matter: fresh perspective on the words we use to describe the hobbies and interests of others
• What it means to truly “be social” with an autistic child
• Two toddler’s-choice books on diversity and kindness

 

“Autistic obsessive interest” . . . or expertise?

In a workplace or family circle on any day—

Brett talks a blue streak about fantasy basketball. He’s a “fan.”

Joanne talks nonstop about food and wine pairings she’s planning. She’s a “connoisseur.”

George finds ways to relate every little thing to all the Comic Con conferences he attends. He’s an “aficionado.”

All of these people (not their real names) are adults and not autistic.

And in a school or family circle on any day—

Sophie knows the names, flags, and #1 export of every country and territory on the planet.

Aidan can give you six routes between any two points in the city of Boston.

Bella has a file with photos she’s taken of more than 200 species of flowering weeds.

All of these people are autistic children (not their real names). They love to talk about their interests. Adults call them “obsessive.”

Never have I understood why an autistic child’s voluminous knowledge of a topic is dissed as “obsessive” rather than recognized for what it is—subject matter expertise.

The meme above reached over 100,000 people on Facebook recently and sparked a lively discussion on where the line between obsession and expertise might be. Like most parents, I took great pride in my spectrum kids’ subject matter expertise and shouted down any suggestion of obsession.

Subject matter experts

Reader Tammy Prokopowich offered the perspective that “Subject matter experts or SME are terms being used in the inclusive workforce.” A degree, she reflected, isn’t the only measure of intelligence. “Experience, creativity, ingenuity and diversity of thought will shape the future.” Many parents commented on their autistic children’s expertise in everything from deep fat fryers to elevators to military uniforms to walruses to carousels, band organs, pianos, idioms, silent movies.

But one reader’s comments brought me back one of my own mantras: in all things, balance. Mark King offered this profound and sobering perspective from a very personal standpoint:

“I am a subject matter expert in a couple of subjects, and have been compulsively obsessive in others. When engagement with the interest becomes more important than self-care, it’s obsession. I’ve been so into subjects when I was younger that I’d neglect myself (forgo sleep, food) endanger myself, and be manipulatable by my compulsive interests. This is obsession to me, where the allure of interest is so intense it compromises your health, happiness and values. I’ve had to set up boundaries and self-tests to ensure interests don’t encroach obsessions. It’s like the difference between being a wine connoisseur and being an alcoholic; once the interest is addictive and begins spoiling rather than enhancing your life.

“Unfortunately, the tipping point isn’t always visible from the internal viewpoint. It also takes a lot of trust to take on board when someone says ‘hey, that interest isn’t healthy.’ Obsessions might give short term reward/comfort, but longer-term detriment, and it’s very easy to get into a cycle of behaviour.”

My thanks and admiration to all who contributed to the conversation. I’ve always believed that true expertise in autism can only come from aggregate knowledge and wisdom across its many facets, in community with all who live and work with our autistic children and fellow citizens.

***

 An autism mom’s put-down-the-phone moment

“There’s no shortcut to socializing. I’m going to try to be more present and engaged.”

My thanks to Toronto mom Amy Doary for agreeing to share her thoughts on the jolt she got while reading “Help Me be Social,” Chapter 8 of Ten Things:

“Reading that chapter title brought to mind all of the times I’ve taken Christos to the park and watched him across the playground while I’m on my phone, half engaging in the precious outside time he loves so much.⠀⠀⠀⠀⠀⠀

“Other kids like Christos. He has such a sweet nature and always a big smile. From the outside, it looks like he’s not interested in playing with other kids and he’s happy playing alone. This chapter was a good reminder that this is not necessarily the case, he (and probably we) need some practice. It also pointed out that social and emotional intelligence are just as important as verbal language. In fact, in most situations, communication occurs before a word is even spoken.⠀⠀⠀⠀⠀⠀⠀⠀

With little-to-no peer socializing at the moment, I’m really going to try and be more present and more engaged during our outside time. In fact, today I’m leaving my phone inside. There’s no shortcut to socializing, so we’re going to practice every chance we get.”

“No shortcuts to anyplace worth going”

Ellen here: I teared up when I read Amy’s words “no shortcut.” It took me all the way back to the original edition of Ten Things, when I wrote:

The revered opera diva Beverly Sills, mother of two special needs children, once said, “There is no shortcut to anyplace worth going.” True, but the journey can be steeped in the joy of discovery.

Sills was and remains one of my earliest inspirations.

Read Chapter 8: “Help Me Be Social” in its entirety here.

Amy Doary’s remarks originally appeared on Instagram
Photo by: @capturedkindred

***

Guest reviewer: Toddler’s choice books celebrating diversity and kindness

My guest book reviewer this month is my two-year-old granddaughter. We’ve been reading together since the very week she was born, everything from wordless books to silly stuff to books about great women and social issues. At only four months old, she sat captivated through a forty-page book about Ruth Bader Ginsburg, engrossed in every page. Whether it was the illustrations, the sound of my voice (or the comfy lap), I’ll never know, but I do know that children will love books if make them part of their everyday life right from the start.

When her daddy brought home the two books featured here, she insisted on reading them over and over and over. Then she brought them to my house so she could share with me—with very few words, but definitively! —why they’re so special.

All Are Welcome, by Alexandra Penfold and Suzanne Kaufman, was inspired by a poster Kaufman designed for her daughter’s school, the staff wanting to send the message that they would not only protect, but celebrate inclusion and diversity. The poster’s popularity spread far and wide. Penfold’s bright, simple rhyming text takes us through the children’s day, where differences in dress, play, speech, art, food and more are respected and enjoyed, each page ending with the title affirmation.

We’re part of a community.
Our strength is our diversity.
A shelter from adversity.
All are welcome here.

As you can see, All are Welcome gets the two-thumbs-up rating from my grandie, who chimes in on every single page, “ALL are welcome here.”

Eric Carle’s Slowly, Slowly, Slowly Said the Sloth reminds us that our particular way of doing things is not the only or even best way, and that unkindness is never okay.

In this gorgeous and colorful book, a sloth hangs from a tree and goes about its life—slowly. Moves slowly, eats slowly, falls asleep slowly, through day and night and all kinds of weather. Numerous kinds of animals move under, over and around his tree, some in live-and-let-live mode, but others with sharp criticism. Howler monkey, caiman, jaguar, anteater—one after another asks, why are you so slow? Why are you so boring? So lazy? So quiet? The sloth’s answer comes . . . slowly. He replies that he is indeed boring and quiet and slow, but he is also calm, unflappable, stoic, and a seeker of peace, “but I am not lazy. Things is just how I am. I like to do things slowly.”

Our toddler reviewer responds to each of the insults flung at the sloth with a firm “NO.” Then she tells me her favorite animals in the story are the puma and the armadillo. Why?

“They nice.”

***

 Maternal mental health month and a special birthday

This week marks the third birthday of The River by Starlight, my based-on-true-events historical novel about a woman’s courageous quest for self-determination in the face of little-understood perinatal and postpartum psychosis, and the social injustice inflected on her because of it. I’ve been blessed to reach audiences around the world, women who’ve cried through telling their stories, their mothers’ and grandmothers’ stories. I’m often asked if any progress had been made, and the answer is yes, yes, but not enough and not fast enough.

However, The River by Starlight was unique in presenting a deep point of view virtually never seen in fiction—a husband’s grief and helplessness in the face of this wife’s illness. A century ago, there was no help for either. In this regard, I’m thrilled to note that finally, finally, we’re beginning to see resources that recognize and help partners alongside mothers. Everyone benefits from this—moms, partners, children, community as the taboos around mental illness lift.

Read about why I wrote this story, and why shattering these brick walls of taboo is so necessary.  We can and will do better.

The River by Starlight is available from your local independent bookstore and online outlets everywhere. Contact me for book club visits and goodies.

 

Let’s connect

Find me on Facebook, Twitter, Instagram, Pinterest and LinkedIn.

Visit and contact me at ellennotbohm.com 

Invite me to visit your book club, blog or post.

Work with me. I offer affordable coaching and editorial services for emerging as well as established writers, whether you aspire to publication or your writing is for your eyes only.