Issue No. 30, April 2011

Every time you stop a school, you will have to build a jail. It's like feeding a dog on his own tail. ~ Mark Twain


Putting Perfect to Rest

Have you heard the news? Autism, like Pluto, is not a planet. Yes, we’ve all felt that way at least once. But it’s a short-stay experience, because Planet Real Life exerts the stronger gravitational pull, keeping us in orbit around the larger planet. Thank goodness.

On Planet Real Life, we constantly experience the limitations of language. From our children’s earliest moments, we focus on teaching them to “use their words.” So sharp is this focus that we often miss or ignore the other end of the pendulum, that is, what happens when a word becomes so overused as to render it meaningless or take on a connotation opposite its original meaning. The most cogent example of this is the word “special.” How do you react to terms like special dispensation, special agenda, special interest group—special education? Not only is special not special anymore, in some usages it has become pejorative. Many taxpayers resent the money funneled into special education; they see it as money taken away from “normal” kids, and they fail to see it as investment in ensuring that our kids can achieve adult lives independent of public funding.

“Normal” is another word whose time has come and gone. In this excerpt from 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, the mother of a middle-schooler frets about her son having only two friends, and about wanting him to do “normal” adolescent things. Her son’s speech-language pathologist redefines “normal:”

“(You say) he’s only made two friends. I would rephrase that: he’s made two friends! One shares his interest in model trains and one shares his interest in running. He knows how you feel, though. So I am going to share with you what he told me the other day. He said, ‘I don’t want a lot of friends. I can’t handle a lot of friends. More than one at a time stresses me out. I can talk to these two friends about things I’m interested in. They are great for me.’

“Walk through this or any other school. You’ll see a huge range of ‘normal’ middle school behavior. You’ll see nerdy normal, sporty normal, musical normal, artsy normal, techie normal. Kids tend to gravitate to groups that make them feel safe. For now, your son has found his group. You and I walk a fine line: honoring his choices while continuing to teach him the skills he needs to feel comfortable expanding his boundaries.”

“Your child has many social selves. To embrace all of them, and therefore him as a whole child, is to redefine how we view normal—one person at a time.” 

I’ve come to feel the same way about the word “perfect.” With the best and most loving of intentions, some of us have begun to use this word to describe our children, and in its sincere but casual use, it may be just as dangerous as “normal” or “disabled.” Interacting with as many parents of children with autism as I do is often wondrous. The shift in attitudes over the past decade is unmistakable. While there are still those who confront autism with grief, denial, anger and blame, there is a groundswell of those who accept the challenge by choosing optimism, determination and education over fear and bitterness. More and more, parents tell me their child is “perfect just the way s/he is.” They don’t like references to autism “as a disorder that implies there is something is wrong when in fact my child was born perfect.”  They believe “everything will be perfect if I just love this child.” Online you can find “My Perfect Child” autism community and “The Perfect Ten About Your Child with Autism.”

I never take these references to perfection as implying that parents aren’t seeking services for the various aspects of their child’s autism. They are, often stridently. Nevertheless, I am going to urge that we use that word as sparingly as we should “normal.” Perfect, by definition, means “flawless.” No one is perfect, and that’s immutable fact.

A common characteristic of autism is the tendency to think in concrete terms, to interpret language literally, to experience life’s tribulations and triumphs as black-and-white, all-or-nothing propositions. From their perspective, “perfect” sets up a bar of expectation that fails on both ends, and in the middle. The standard of perfection is unattainable in its literal definition, so the child thinks, why even try? Or, the standard becomes one of complacency: if I’m perfect, I don’t have to try. Or, it creates a state of confusion and anxiety: Mom says I’m perfect, so why is everyone else always correcting me?

Sending our kids the message that they are perfect doesn’t serve them well in a world that constantly tells them otherwise. Far more useful is to imbue them with the understanding that in everyone, everyone, there are issues and aspects to improve upon, refine, discover, master. Every. Single. Person. Without. Exception. This is one of life’s few concrete truths upon which your child can rest his full weight. In a world that offers him distressingly few absolutes, this is a big one.

If your child is young and his challenges many, imagining him as an adult is a far stretch. But it comes all too soon. The simple messages of childhood collide with the oil-and-water social/ emotional brew of adolescence. And the older your child grows, the more she must navigate on her own, and the more her ability to self-advocate becomes critical.  Her success as an adult will depend upon her being able to describe the aspects of her autism that impact her ability to learn, communicate and socialize, and to be able to ask for the kind of help she needs, thereby acknowledging her imperfection.

Success as an adult, not flawlessness, must be the goal toward which we guide every child, because it is an aspiration both vital and attainable. “Perfect” no more exists and is no more worth striving for than “normal.”


New column: Perspective: Rethink, Reframe, Relate 

After a year’s hiatus, I’ve returned to Autism Asperger’s Digest as a regular contributor. My new column, Perspective: Rethink, Reframe, Relate, debuted in March-April issue. Read it here.

Beginning with the May-June issue, all my columns will be live on the Digest website and on my website.

www.autismdigest.com


Autism Awareness Month: pass the word

Ten Things Every Child with Autism Wishes You Knew

Ten Things Your Student with Autism Wishes You Knew

My Can-do Kid

Right on the Money

A Thing Worth Having: Just Say No to Cheating

Food Moods: We Are, Literally, What We Eat

Rx for Battle Fatigue

The Difference Between Heaven and Earth

Yes, it IS Your Problem

Ten Things I Want My High School Senior with Autism to Know

Guiding Your Child with Autism to Adulthood


Call for submissions

Hyperlexia, a literary journal celebrating the autism spectrum, is now accepting submissions year-round.

Take a look at their updated website and new submission guidelines.


Join the discussion

Lively discussions unfold every week on my Facebook author page. Find me and readers from more than twenty countries and add your voice to these important topics, and more.

  • What parents want pediatricians to know
  • My definition of the World’s Biggest Loser (and it has nothing to do with weight loss)
  • Rebutting untruths and stereotypes about autism
  • Building autism awareness one mind at a time


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


If you’ve read my books and feel inclined to share your thoughts with others, please consider posting a review on my book pages at www.amazon.com. It’s easy to do and you don’t have to post your real name.


Please forward this newsletter to anyone you feel might share an interest in our kids with autism. New subscribers can sign up at here.


©2011 Ellen Notbohm | Third Variation Strategies

Keep up with my latest on Facebook
Please join me on my author page on Facebook. This is where you’ll find the latest news, dialogue and preaching ;o) about all the subjects my work encompasses. Post your comments and share your ideas. See you there!


Visit me at ellennotbohm.com
Book excerpts, articles, news blog, foreign translations, newsletter archive. Stop by and tell me what you think and what you’d like to see.


Invite me to visit you. Got blog? Yes, I do guest shots.  Got book group? We can hook up by phone.  Got show? Web, radio and podcast interviews available via phone or Skype.