Disclosing Asperger’s In Childhood #1: Start with the Truth

In our family system, we have a major emphasis on truth. We try to know the truth, speak the truth, and accept the truth. Even when the truth is painful or unwelcome, it is better than the alternative—which is to live in deception or denial.

With children, our commitment to truth must be developmental. When a child asks where babies come from, we don’t break out a birthing video—but neither do we subject them to nonsense about storks or cabbages. Like many sensitive subjects, there is a developmental arc to discussions about identity and conformity. This has been especially true in our life with Asperger’s Syndrome.

We began our conversation with our son by explaining some of his unique strengths. We praised his ability to spot aircraft when we saw only clear blue sky. We affirmed his “super-hearing” and sensitive fingertips. We constantly reinforced both his thirst for knowledge and more importantly—his effort at attaining information. But we also used his powers of analysis to help reflect on ways that he lived life differently. 

For our boy, environmental and social stimuli were so overwhelming that he often withdrew into a seated fetal position, tucked inside a sweatshirt. We called this “turtleing.” We helped him see that turtleing was a unique behavior—not something he would see other students doing. Since his intelligence craves categories and dichotomies, we split his classroom behaviors into things that integrated him into the group and things that isolated him from the group. This helped him see that monopolizing conversations, insisting on rigid rules in games, and non-standard (never “abnormal” or “odd”) behaviors set him apart from others, while mutual conversations, playful flexibility, and mimicking the behaviors of others made him more welcome in the social circle of the class.

So far, I’m focusing on things we shared with our son. Next I’ll explain some of what he shared with us, and I’ll finish with what and how he shared his unique identity and special needs with his sixth-grade classmates.

Emotional Frailty #1 At-Risk

My emotions undermine me.  Intellectually, I can be a survivor.  Emotionally, I am often the first one “voted off the island.” I may present a flat affect most of the time, but that is only an attempt to keep control on the most erratic aspect of my personality.  I have learned that emotional control is prized by every teacher in every classroom–the cardinal sin of our school culture is to lose emotional control.  My inflexibility and insecurity mean I live in constant fear of catastrophic failure.  As Karen Williams observes, “Children with AS rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate.”  Living with the constant fear of the next embarrassing failure can be incapacitating.  This is partly why the incidence of depression and suicide is elevated for individuals with Asperger’s.  Given the Hobson’s choice of keeping emotions unexpressed and succumbing to depression and self-injury, many Aspies accept the social stigma of losing composure and social status.  This is why so many of us with Asperger’s embody “fragile vulnerability and a pathetic childishness.” (Wing, 1981)  Because I am so vulnerable, I need you to assertively protect me from emotional assault, and the consequences of my own emotional frailty.

Brittle Intelligence #2: Some Solutions

Teachers, What can you do when your student with Asperger's can't handle basic academic content?

1.           Use concrete language.  I misunderstand abstractions, allusions and idioms.  They distract and confuse me.  If you must, explain them to me in literal terms and check to see if I can translate them into useful understanding.

2.           Incorporate visuals.  I am so literal that the symbolism of language can escape me.  Adding visuals–drawings, flow charts, maps, or pictures will amplify and consolidate my comprehension.

3.           Be consistent.  I crave sameness.  I invest so much energy figuring out how to navigate your expectations, homework formats, lesson style and classroom management that I will give up and withdraw if you change things up.  What may seem boring and predictable to you is life support to me.  I appreciate repetition and redundancy–they give me the confidence I desperately need.

Brittle Intelligence #1: The Problem

My intelligence is brittle.  It may be strong, but my knowledge is inflexible.  I may know more facts and details about a subject than even you do, but that does not mean I comprehend them.  Like the Star Trek android Data and his antecedent Mr. Spock, I combine voluminous informational capacity with spectacular emotional ignorance [immaturity].  I think and learn in ways that are so rigid they become irrational.  I may know every math fact on the timed test, but if you change the color of the paper on which it is printed, I lose composure and can’t concentrate.  My speech seems unusually adult, because I hear and mimic phrases and intonations perfectly.  Then, when I go off script, my literal thinking and failure to grasp idioms make me seem like an English language learner who lost his phrasebook.  Not only can I not think “outside the box”, I spend most of my time trying to figure out the box.  There is safety and predictability in the box.  If I can only figure out the size, texture, social rules, schedules and dozens of other characteristics that govern the box called your classroom then maybe I can get through another day without a major meltdown.  If not, watch out.  Fortunately, there are specific strategies you can use to scaffold my brittle intelligence:

Tomorrow: Three steps teachers can take to scaffold my intelligence.

To my teachers: Asperger's Overview

This is a repost of a series I started over at another blog I share with Doug Hering. We are focusing more on operational and financial aspects of charter school management, but I also want to create and share information about Asperger's in education. That's the genesis of this blog.

I welcome comments, especially those that tell your stories of learning with and about AS.

Here's entry #1 in the series:

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Mr. K. probably didn’t know how piercing his jokes were.  After one of my clumsy moments he pronounced,  “Peter’s the only one here who needs a seatbelt on the toilet.”  Mrs. L. told me almost daily “you’re smart enough to know better.”  Mr. H. was so offended by my intellectual arrogance he described my success as “unfortunate.”  When I won recognition from a statewide group, he read the announcement and added his postscript, “They don’t know you like we do.”   All these teachers, and dozens others, were good people, effective educators, and profoundly frustrated by the challenges of teaching a child with Asperger’s Syndrome.  On most days they were appropriate and supportive teachers, but unrelenting frustration can push any of to be sarcastic and petty.  I can’t dial back the calendar and help those teachers see past appearances, but perhaps I can give a voice to the “different” child that arrived in your classroom this year.  The smart girl who just does not fit in–the boy who masks his insecurities with showy intelligence, they are me and I was them.  Somehow, I made it through and returned to schools as a teacher and principal.  What I now know professionally is that no teacher can develop the expertise necessary to fully support every student’s needs.  Instead, teachers need guidelines, principles and links to further resources.  That is what I offer.