Issue No. 55, August 2014

“You can have great teachers, but if you don't have a good
principal, you won't have a good school.”

~ Eli Broad


Ten Things Parents of Children with Autism Want Principals to Know

Where's My IEP?According to those inescapable news reports, last year’s back to school shopping season was lukewarm enough to cause retailers distress. Maybe more kids with autism means there are more families like ours, for whom there never was “back to school shopping.” Regardless of the calendar, my sons refused to give up their comfy, familiar clothes until the clothes themselves gave up. And after several years of seeing half the school supplies of their lists came home untouched at the end of the year, I bought items only when and if the need arose.

I’ll admit to a twinge of cry-me-a-river thought about merchants stressing over parents not buying enough stuff. My concerns at the beginning of each school year loomed much larger, and the list of what my children needed couldn’t be filled at any store. Do my son’s new teachers and school staff have experience and training in working with students with autism? Do his teachers and caseworker have his IEP? Have they read it? Do they understand it? Do they have the resources they need to implement it? Will they call in outside resources when needed? Will they give him a clean slate free of expectations based on other students they’ve had? Do they view inclusion of different learners with enthusiasm, or as a burden? Can my son meet his teacher(s) and tour his new classroom(s) before the first day of school? How often and in what manner will the school communicate with me? What opportunities will there be for me to be involved, with the class or with the schoolwide community? Are there any after-school activities suitable for his social, physical and language abilities?

Now, back-to-school season for me means requests from both parents and school staff for information and handouts that will help educators understand their student with autism. Because these requests are as predictable as the change of season itself, I posed a few questions to one of Bryce’s wisest and most influential teachers. What, in her experience, do parents need to do to best prepare a child with autism for transition between grade levels, teachers, schools? What can administrators do to best serve their students with autism and forge good relationships with the students’ parents?

“That’s a hard question for me,” she replied. “I don’t see students with autism as a population; I look at each one individually to determine what they need.”

And there you have it, a teacher’s embodiment of one of our favorite mantras, “If you’ve met one child with autism, you’ve met one child with autism.”

I like to remind parents that this goes for educators too. During my children’s educations, I interacted with more than a dozen principals. They ranged from uncaring and ineffectual to brilliant, tireless and personally involved with my child. So I tell parents, if you’ve met one principal, you’ve met one principal.

Recognizing the individuality of each student with autism is the starting point for being able to teach them in a meaningful way, but what more specific advice can we parents offer educators looking to tap their student’s full potential? With some input from my intrepid Facebook community across more than forty countries, here are ten things parents of children with autism want their school principals to know:

  1. Listen, listen, listen. Listen more than you talk. Be present. Get to know each child as an individual. Find opportunities to show your interest, throughout the child’s day and week. Attend parent-teacher meetings but let those who interact with the child for hours each day take the lead. We know it’s your job to support your teachers, but supporting the child takes precedence over everything else. The more you are able to refrain from taking sides, the more you’ll be able to help diffuse the emotions that inevitably arise in even the best relationships, and the more you’ll be able to steer the team to child-centered decisions based on sustainable facts, freely shared among committed team members.

  2. We don’t expect you to be an autism expert, because true autism expertise is the sum of effective teamwork. But we do expect you to be curious about how your student with autism thinks, learns and processes language and the sensory world differently. Be curious about what accommodations will most help him succeed, and be pro-active in providing those accommodations.

  3. Don’t be penny-wise and pound-foolish. Educating a child with autism is an investment in the future of a community. The meanest bean counters in the world are the ones who should most strenuously support robust interventions and accommodations. Childhood services are infinitely cheaper than supporting a dependent adult through a 60-year span. That’s not “special education;” that’s common sense, third-grade arithmetic.

  4. Autism is not a “behavior disorder.” There’s always a reason for a child’s behavior, and it’s often related an aspect of his autism that he can’t control—sensory overload, inability to process the language around him and/or to articulate his needs and wants, social anxiety (often a source of fight, flight or freeze reactions). Before you impose consequences for behavior, ensure that you’ve identified and addressed the root cause of his behavior. This doesn’t mean he’ll never be a stinker just because he’s a kid. Typical aspects of development are happening alongside his autism. But imposing consequences for behaviors that are beyond his control doesn’t teach him how to prevent the behavior in the future and what to do differently next time. It only teaches him that he can’t trust you make the effort to understand him. And if he can’t trust you, how will he learn?

  5. Actively foster a school-wide environment that is inclusive and accepting of all students. A dynamic environment is crucial—but also beware overcompensation or over-accommodation by either school or parent(s) that can render a “child in a bubble.” Work with parents to agree on reasonable expectations as to what the school setting can provide the child, and what she can both get from it and contribute to it.

  6. Acknowledge that no one knows the student better than the parents and family. Include them in all the aspects of the child's education. Take the initiative—parents shouldn't always be the ones to initiate contact. Communicate to parents what you like about your student and what you see as his/her strengths.

  7. The safety of all students has to be a priority. That means open, frequent communication with families, open door policy, training for all staff and a structure that allows staff to get the needed breaks, outlets for venting, places to seek support on a regular basis. Don't hide behind "privacy issues" as a way to avoid sharing vital information with families about their child. There’s always a way to relay events involving other students without violating others' privacy.

  8. It should never be Us vs Them. “When a parent comes to you with concerns,” says one mom, “open up and listen, and realize that what you may perceive as an angry parent is actually a parent who is frustrated and wants to help.”

  9. Honor the IEP. Resist the urge to deny accommodations or supports that would “make the child stand out” to peers. Very often, peers can benefit from similar accommodations to help them learn their best, such as weighted lap pillows, ball chairs, chew toys, headphones, etc. Celebrate a culture in which you support and encourage all learners and learning styles.

  10. Take good care of yourself—and don't take yourself too seriously! Exemplifying self-care and humor as a leader will make your school's community a healthier and happier one.

© 2014 Ellen Notbohm



“I’m renaming The Autism Trail Guide ‘The Support Group Guide.’”

The Autism Trail Guide: Postcards from the Road Less Traveled is now available in Kindle format, at the book group-friendly price of just $3.99. Updated, with an all-new appendix of questions for study, discussion, or self-reflection, it’s ideal for parent support meetings, classrooms, families and journal writers.

“I’m renaming The Autism Trail Guide ‘The Support Group Guide.’  The essays flow so seamlessly that we use two for each meeting, concentrating on one for as long as it takes, then touching on the other for the next meeting. We pick up the new topic, and refer to the prior one when necessary. If the author had this in mind when she compiled the book, she’s a genius!”
~Linda Hamati, autism parent support group leader

“When my grandson was diagnosed with autism, I devoured dozens of books and hundreds of articles. Just when I was sure I couldn't read anything new, I picked up The Autism Trail Guide. It’s helped me more than any book I've read. Ellen Notbohm's writing is inspiring, and she gives me strength and hope every day to help Jake.”
~ Jennifer Hutchinson, author of Unlocking Jake

Eric Hoffer Book Award finalist and ForeWord Book of the Year finalist

Read an excerpt here | Buy now from Amazon




This month in Autism Asperger’s Digest


“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, expressing feelings of hopelessness and uncertainty about raising a child with autism. But unless I’m missing something, what jumps out at me first is that I can’t see one thing in these messages that indicates a reason for hopelessness. . .



This month on my Pinterest quotables board

See more pins:

  • You might be an autism parent if you're constantly finding that your child is right and it's the rest of us who need attitude adjustment.

  • Don’t use "normal" as a measure of where a child with autism "should" be.

  • What toddlers and cats teach us about autism naysayers.

  • If you’ve met one child with autism . . . What is real to a child with autism.

Follow my Pinterest Quotables board for new pins to share each week, or browse my other boards of book reviews, articles, interviews and translations. Got an idea for a board you’d like to see? Contact me through my website or directly at


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? Visit the archive on my website for past features.

  • Smarts and Crafts: Message in a Birdhouse
  • The Two-Word Mantra for IEP Meetings
  • Who are They Calling a Lost Cause?
  • Autism Misconceptions for Smarties

On my blog:

  • “I love someone with autism” or “Show us the money”?
  • Happiness is blowing up witless platitudes about happiness
  • “The school says my son’s autism is ‘cured’ and no longer needs his IEP”
  • Take the cut out of haircut for kids 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.

All content in this newsletter ©2014 Ellen Notbohm