Issue No. 36, January 2012

Who’s to say who’s an expert?

~ Paul Newman

Experts One and All

Ever see the 1980 spoof Airplane!? Even if you haven’t, you may be familiar with Leslie Nielsen’s famous line. In response to the pilot’s incredulous gasp of “Surely you can’t be serious!” Nielsen deadpans, “I am serious. And don’t call me Shirley.” Yeah, it’s corny, but I laugh every time. I also think of that line sans the chuckle every time someone tries to label me as “a mother and an autism expert.” My response is always that I am a mother, yes. But don’t call me an autism expert. And I am serious.

Bryce’s struggles with language left me deeply attuned to the often careless generality of the way we use words in contemporary society, and it often disturbs me. In this column, we’ve put words like tragedy, normal, suffering and perfect under the microscope and found their usage deserving of reconsideration. Today’s word is “expert.” Why, in a world that wants to tag me as an expert, do I resist it? Because overuse of a word can render it nearly meaningless. In our short-cut, extreme-adjective communication culture, I’ve come to believe there may be no such thing as an autism expert. Either that, or the opposite—that true expertise lies only in the aggregate wisdom of the entire autism community, if only we would see it that way.

Some years ago, I spoke at a conference where, as usual, I sprinkled my presentation with personal experiences. In exploring how there can be many factors that may trigger negative behavior in our children, I described how my son’s meltdowns faded dramatically when we eliminated food dyes and preservatives from his diet. Afterward, a doctor objected strenuously to my presenting suggestions to parents and grandparents in a way that implies that something that is anecdotal is tried and true.” My experiences (“some anecdotes”) did not qualify as tried and true because the outcomes had not been substantiated by research or supported by science.

This bewildered me. There wasn’t a soul in the room who didn’t know that I was speaking as a parent, not a scientist. I share my parental experiences because the parent of a child with autism, particularly one in meltdown, is a 24/7 on-call first responder in need of tactics that work for a specific child, in real time, irrespective of whether science  or academia has been able to measure it--yet.  We develop the proficiency, stamina, inventiveness and resilience needed to navigate both the onslaught and the backwash of the storms our child’s autism tosses our way. Humankind’s most momentous discoveries often begin with a single instance or observation, and a human mind curious enough to follow it up.  Clinicians and professionals—who we dearly appreciate and do not want to be without—see many children with autism, but most have never lived with one. Have never lived the gritty, giddy, predictable unpredictability of it, the chronic bone-weariness and crushing desperation that come at 8:00 pm when your child is engaged in his fourth full-strength meltdown of the day (and the twentieth that week). When I was at that point, I did not care whether the answer came from science, anecdote, divine intervention or voodoo. The science was the science of Whatever Worked to Make Us Healthy and Safe. In the instance of food dyes and my son, a trial elimination diet was a no-risk, non-invasive, low-cost tactic. It worked for my particular child.  Less than four years after my anecdotal talk, the Food and Drug Administration in the US and the British Food Standards Agency had acknowledged that food dyes spark hyperactive or aggressive behavior in some children.

That conversation on anecdote-vs.-science crystallized my thinking on what constitutes an autism expert. Those thoughts fell, natural as rain, into a seven-tiered pyramid that reflected the hour-by-hour amount of face time racked up by the key players in our children’s lives. Looking at the number of hours of interaction at the various levels, it seemed to me that expertise could not be based on professional training alone nor on quantity of interaction alone, but that skill, knowledge, tactical thinking and resourcefulness are required of adults in every environment our child inhabits. The pyramid looks like this (tweak for your child or student):

Doctor: 1 – 10 hour per year
Therapist: .5 – 2 hours per week, 40 weeks per year
Middle/high school teacher – 1 hour per day, 175 days per year
Before/after school caregiver – up to 4 hours per day, 175 days per year
Special educator – 15-30 hours per week, 175 days per year
Classroom teacher – up to 30 hours per week, 175 days per year
Parent – up to 24/7, 365 days per year

In my pyramid, either everyone’s an expert or no one’s an expert.  Where the goal is seeing our child into healthy, happy, productive, responsible adulthood, we need all layers working in concert toward that common goal. I have always stressed that we must view our child with autism as a whole person, not a bucket of broken pieces parted out. The same standard should apply to our definition of an autism expert. Recognizing the value and the necessity of the unique perspective from each layer of the pyramid forms a potent collective expertise that no single component can begin to touch. True experts know that their own expertise, however vast, is still limited, and that only in compound with other experts does the application of that expertise reach its full potential. Our pediatric dentist told me, “I’ve learned more from moms in my practice than I ever did in dental school.” I’ve seen young teachers thrilled and awed by what they’ve learned from seasoned paraeducators and volunteers, and from babysitters/caregivers and siblings. Our children have no use for selective labels like “expert”; their only criterion is, does this person make my life more comfortable, more enjoyable, more comprehensible, more interesting?

The opening pages of Ten Things Your Student with Autism Wishes You Knew make the argument that embracing a model of circular learning must be the starting point for teaching the child with autism. S/he tells us:

Learning flows in all directions, not only from you as the teacher to me as the student, but from student to teacher, from student to student, and from teacher to teacher. This circle of learning is what makes it work for all of us. . . You have as much to learn from me as I do from you.

Substitute “expertise” for “learning” in the passage above, and you’ll understand why I find it more accurate and productive to present myself as a teacher-learner than as an expert. I’m going to decline any tag that suggests in even the slightest way that I have reached some arbitrary pinnacle of knowledge and needn’t strive to learn more and to be open to new information from whatever expected or unexpected source it may spring. An expert knows all the answers, the old saying goes, but only if you ask the right questions.

So let’s put away the labels and the pedestals and the egos, and let’s all of us respect, validate and make the most of the expertise in each other.

Surely, we can be serious about that.

© 2012 Ellen Notbohm

Current Reads

Autism Asperger’s Digest – Perspective: Rethink, Reframe, Relate

The People in Your Language-Depleted Neighborhood

Conversational speech is a learned skill, and often more so for children with autism. The essential component of any learned skill is practice, practice, and more practice. And that is why it came to me on a morning round of errands, why it is that small talk remains a challenge for our kids, and how it is that we no longer talk to the people in our neighborhood. I got cash from an ATM; I didn’t talk to a bank teller. I scanned my groceries through the self-checkout line; I didn’t talk to a live checker. Our library now has automated checkout; I didn’t talk to the librarian. I mailed a package at the Automated Postal Center without talking to a clerk. I’d bypassed at least half a dozen opportunities for human interaction. Wall Street Journal publisher Les Hinton was recently quoted as saying that the scarcest resource of the 21st century, “after water and food and all of that,” will be human attention. . .

Calgary’s Child

Mine! Teaching the Art of Sharing

“Mine! Mine! MineMineMineMineMine!!!” The adorably selfish seagulls are memorable characters in  Finding Nemo. But their behavior doesn’t play well in real life. The concept of sharing can be difficult; most young children need patient coaching in the art of sharing. It’s a nuanced social skill that requires an understanding of degree: sharing is not an all or nothing proposition. . .

Ready or Not, Here I Come? Gauging Your Child’s Kindergarten Readiness

Chronological age should not be the sole determinant of whether he is ready for kindergarten. It’s a huge leap from preschool, day care or the home setting to kindergarten, with its longer, more structured day, larger class or group size and focus shift from play to academics. If your child exhibits developmental delays, you may be wondering if he or she is ready for kindergarten. Might he or she benefit more from an additional year of play-focused growth and maturity before facing the more difficult social and academic requirements of school? There is no single criteria that indicates readiness for kindergarten in any child.

ParentGuide News

Art Smarts: Offering kids with special needs a creative outlet

Art can be a wonderful, expressive medium for all children. But for children who have language, emotional or neurological challenges, art activities can be especially meaningful. Art opens the lines of communication for kids with limited verbal skills and provides opportunities for tactile development, visual organization, fine motor control and hand-eye coordination. Producing a vibrant, tangible product fosters children’s self-esteem . . . . Parents can encourage children to explore their artistic potential in many ways. These creative ideas come from art therapists and paraeducators.

Imagination Soup: Everyone Makes Mistakes: Helping the Child with Autism Cope with Frustration

Children with autism love absolutes, and one of life’s absolutes is that everyone makes mistakes. It’s the degree, the nuance, the scale, the gradation of these mistakes that confounds the child with autism. Fear of failure can paralyze your child or student. Take a two-pronged approach to drawing him out: instill the understanding that everyone makes mistakes, and that everyone needs help. . .

Meet me in Portland

One in 100: A literary look at parenting a child with autism
Join me and my good friend, poet Brittney Corrigan, author of the forthcoming poetry collection Navigation, as we weave a word tapestry of their experiences both triumphant and troubling in raising children with autism. I’ll be reading from one or both of my Ten Things books, and from my joint work with Brittney in The Autism Trail Guide. Brittney will read from a series of poems that plunge fearlessly into the flinch-worthy emotional waters of raising her son with autism. Saturday, February 4, 3:00 pm at the Belmont Library, 1038 SE Cesar E Chavez Blvd in Portland OR. Free.

E-read me! My books are now available on iTunes, Amazon Kindle, Barnes & Noble NOOK, and Sony Reader Store.

Did you miss my December newsletter? In Comeback. . . or Setback? we consider whether or not that snappy comeback to rude questions about your child is effective advocacy.

I’m booking speaking engagements, readings and book signings for 2012. Contact me at

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Book excerpts on website

Cick here for book excerpts

Ten Things Every Child with Autism Wishes You Knew
from Chapter 8: Please Help Me with Social Interactions

Ten Things Your Student with Autism Wishes You Knew
In its entirety, Chapter 3: I Think Differently

1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, 2nd edition
"What We Miss in Misbehavior” and "Game Plan for Meltdowns"

The Autism Trail Guide: Postcards from the Road Less Traveled
“The Power of a Cookie”

Newsletter archive: if you are new to our newsletter community, please visit the newsletter archive on my website and browse some popular past features at my newsletter archive

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©2012 Ellen Notbohm | Third Variation Strategies