Issue No. 48, November 2013

“You'll never convince me there is a hopeless situation,
or there is any finality in any success or any failure.”

~ Carlos Ghosn

Autism Mad-Libs: How to fill in the blanks

On long car trips, my brother and I loved to pass the time playing Mad Libs, a fill-in-the-blanks word game where one player prompts another to insert descriptive words into a story without knowing the context. The results are usually comical. Mad Libs is still around; I recently played it at a baby shower. “New parents should always __(verb)__ the baby __(adverb)__ when he or she __(verb)__ during __(noun)__!”

Sometimes my work feels a little Mad Lib-y, sans the humor. I’ll get multiple emails or messages, all with the same theme and variables, something like this:

“My (son, daughter, grandchild, niece nephew) has been diagnosed with (autism, Asperger’s, PDD-NOS, ADD, ADHD). Soon s/he will be starting (preschool, kindergarten, first grade) and I am (anxious, scared, worried, losing sleep). S/he has made great progress with (speech, sensory, behavior, eating) therapies. How do we help (him, her) to (make friends, participate in “regular” kid activities, go places we want to go)? We’re feeling (hopeless, overwhelmed, intimidated) by the complications and challenges of what may happen in the years to come. How do we know if we’re doing the right things? How do we know how much (he, she) is capable of?”

Most parents of children with autism confront some of these feelings and uncertainties. But unless I'm missing something, what jumps out at me first is that I can’t see one thing in these messages that indicate a reason for hopelessness.

". . . has made great progress with therapies.” What better indicator of hope do we need? A child just starting school is very young—he or she has thousands and thousands of days until adulthood. Progressing in therapy at an early age shows us that s/he has the ability to learn, develop and improve skills. Not only is that terrific, there's no reason to think s/he won't continue that trajectory, growing and maturing and advancing in many ways.

"How do we help our child to (make friends, participate in “regular” kid activities)?" How would you do this with any child? By seeking out happenings, settings and people that interest him, not what you think he should be interested in, or what you wish she’d enjoy. An exasperated parent recently told me, “I simply can’t engage him. I’ve taken him to every sporting event I can think of.” I replied, “Stop doing what isn’t working. Ask what he’d like you to do with him. If his answer doesn’t appeal to you, you’ll have some idea of why he doesn’t engage with your chosen activities.” His expression shifted, and I treasure the shaky smile he gave me because I knew things were going be different for this dad and son.

Broadening a child’s interests happens slowly, incrementally. If you don’t start from a place that lets her know you respect her likes and preferences, she may grow to regard all new experiences as something to dread or avoid. She’s more likely to engage with people who share her interests and likes, because that’s true of everyone, not just kids with autism.

“We’re feeling hopeless and overwhelmed by the challenges ahead. How do we know if we’re doing the right things?” There’s a word for this state of mind: parenthood. No parent knows what’s ahead for their child. I recently read a piece arguing that the phrase “do your best” should be avoided, that it causes anxiety because “best” can’t be measured. I couldn’t disagree more. Knowing that you are doing your best as a parent is an intimate relationship with yourself, a feel you develop, an instinct with which you become comfortable. You needn’t explain or measure it for the scrutiny of others. Doing our best isn’t a task-by-task evaluation either, it’s a big picture, long haul state of being. Although far from a perfect parent or wife, I’m at peace knowing that, overall, I did my human best parenting my spectrum children.

Life is random and full of risks, and can change for better or worse in an instant. Those “right things” will change as your child matures; what won’t change is the need for your unflagging commitment to self-education and discovery: gathering information, trusting your instinct, not being afraid to learn by informed trial and error, and nurturing The Three Musketeers (All for one, one for all!) of Autism Parenting: Curiosity, Resilience, and Optimism. When you do this, both parent and child will learn what works, and how set achievable incremental goals, embrace the process and enjoy the ride without obsessing about the far-off outcome.

“How do we know how much s/he is capable of?” No parent knows this at age four, or six, or even sixteen. But there is one great certainty: your child is capable of more than he or she is doing today. I don’t go to the extreme of saying anything is possible, because there are some things kids with autism can't do. They can't stuff pianos up their noses or fly under their own power. But my own can-do son is an example of how much is possible, can-doing things I made myself dare to dream when he was young. He attends college, drives a car, holds a job, manages a bank account and credit card, cooks, votes, takes himself to the doctor/dentist, and travels alone by planes, trains and automobiles. He doesn’t yet live on his own and I don’t know how long it will take him to finish college. But I have faith in the process, because despite enormous challenges, trusting the process has worked so far.

So I would re-write the Mad Lib like this:

“Our child is on the autism spectrum, and has made great progress with early intervention therapies. Soon s/he will be entering a new classroom environment. We’re eager to provide a smooth transition; what can we do at home to prepare, and what information and materials should I provide to teachers? How do we teach social thinking skills, nurture a healthy self of sense? What do we need to know and do to continue to guide our child toward reaching his/her full potential? The challenges of the road ahead loom large, but we are encouraged by how far our remarkable child has come already.”

© 2013 Ellen Notbohm

Further reading:

“Journey to Independence: Guiding Your Child with Autism to Adulthood”
“Being Social Begins with Thinking Social”
“I Choose to be Optimistic” by Bryce Notbohm
“Creating positive partnerships”


A milestone . . .

30 years!Sense of humor intact, Mark and I celebrated our 30th anniversary last month. I must look every year of it because just this week, the 20-something gal at the eye doctor’s office called me “Miss Ellen, dear.” This photo seemed appropriate.

“I’m just an ordinary guy, married to one extraordinary woman,” Mark wrote. “Now that I’ve gotten somewhat used to marriage, I can be a better husband.” In return, I shared a greeting card informing him that the traditional gift for 30th anniversaries is . . . soup. So I took him to the Oregon coast where we feted the day with a seafood chowder toast to whatever comes next.


This month’s in Autism Asperger’s Digest

“On the Spectrum Between Contest and Context”

We have a mantra in our house: “It’s not a competition.” Best, first, top and most are competitive terms, and while competition can be fun, allowing it to pervade every aspect of our thinking is not healthy, because what’s missing from most best-worst questions and designations is something we’ve lost track of as a society in a sound bite, spin-doctor culture: context. Cataloging everything into bests and worsts and single-most whatnot restricts our thinking, and models it for our children. They learn nuanced thinking, perspective-taking, curiosity and social awareness only through years of our patient guidance through the diversity of thought and opportunity they encounter every day of their lives…


Downloadable PDF summaries of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew now available on my website.

Did you miss my last newsletter? Ten Things Every Child with Autism Wishes You Wouldn’t Share calls for putting brakes on parental oversharing on social media—before our children respond in kind.

Your questions answered on my blog

Recent popular topics:

- Autism: one word, many truths. What’s yours?
- Grief after diagnosis: common but conquerable
- “He gives up so easily”
- Autism sensory, social issues can be related
- Thwarting a thrower
- My spin on spinning: rock on!
- Loaded question, nuanced answer: Public, private or home school for child with autism?

Writing a book? Contact me about affordable rates for developmental editing and writer coaching at

Excerpts from all my books are on my website, including full chapters from Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew.

©2013 Ellen Notbohm | Third Variation Strategies