As I work on my memoir about raising Diego, my 31-year-old autistic and bipolar son, Iāve spent many hours reading the stack of records about him gathered over his educational years, reliving how it felt to read pages and pages that attempted to capture his skills and needs, and interpreting their content in a new light.
Reading Diegoās evaluations, it strikes me that itās impossible to overstate the power of words to shape our thoughts and inflict pain, both physical and psychic.
From an evaluation by a school district psychologist when Diego was a 6-year-old first grader:
Upon my arrival at 8:30 am, Diego was situated in a small space containing a studentās desk and chair. Bookshelves marked the boundaries of the space, which was part of a small classroom. Diego was attended by a teacher and teacherās aide. He refused to sit in his seat and threw whatever he could grab into the air, up over a dividing wall, or across the room. Diego attempted to kick, bite, hit, and spit at his teachers. He tried to run out of the room several times. When prevented from leaving he would collapse on the floor.*
Then, toward the end of the evaluation:
Safety issues are paramount in planning for Diego, as he is inclined to run away from adults but has no understanding of environmental dangers or of how he may injure others. Aide staff will be crucial to his educational program, as he will require constant supervision.
How to describe how I felt as I read these paragraphs? Mortified, floored, panicked, unspeakably sad. Yes, the behaviors described were real. The evaluator had indeed observed them. But I knew there was far more to my son than the out-of-control, basically unteachable, child the report portrayed. My Diego was a beautiful boy, loving, funny, smart in his own way. I remember trying to find something positive to hold on to, but since the report included no strengths whatsoever, all I was left with were the potentially negative behaviors Diego couldāve had but didnāt: At least there was no mention of Diego ever hitting, spitting or biting other children.
A few months later we paid a reputable clinical psychologist to reevaluate Diego, hoping for a different narrative. He was 7 by then, and still in first grade. A few excerpts from the report:
Diego, a handsome, slender boy was, from the outset, quite resistant to and upset by the evaluationā¦ At one point, Diego hit me, said I was āstupidā and made a shooting sound and motion toward me.
He became irritated to the extent that he cried and lost physical control, attempting to hit, spit and throw objects at me.
Standard scores on intelligence testing were not able to be obtained because of Diegoās anxiety level and challenges in focus and attention, but Diego clearly falls well below the norm in ALL areas.
Although I could at least hold on to āhandsome,ā the word āallā was a stab in the heart. I didnāt know then that āallā referred only to areas commonly assessed in psychological and educational evaluations, areas like IQ, receptive and expressive language, motor skills and academic achievement. Ā Were Diego to be assessed today, he would still fall well below the norm in āallā such areas. Only now I know that āallā doesnāt include domains for which there are no normed tests: the ability to love unconditionally, the power of a pure heart, and the absence of ill will, envy or resentment.
And onto the third evaluation Diego got in elementary school when he was in 3rd grade, age 9, also from a private provider:
Diego is a charming youngster who is rarely seen without a smile. Over the course of my testing and observations, Diego presented with significant behaviors that will effect his ability to take in, sort out, process and respond appropriately to information in his environment. These include: self stimulatory/perseverative behaviors, limited attending abilities, attempts at non compliance, oppositional behaviors, high levels of distractibility, prompt dependence, attempts at negotiation, screaming/noises, rigidity of thought and action and high levels of verbal scripting about his interests, ETC.
Charming, rarely seen without a smile. Nice. True as well. Diego has always been charming, even during his most difficult periods.
But the word that most catches my attention from this paragraph as I read it today, the word that must have pained me the most 24 years ago is that little abbreviation: etc. What other significant behaviors could Diego possibly have shown? What behaviors, in addition to the ten mentioned, didnāt make the list?
In all testing situations, Diego found a way to work word/concepts into his frame of reference. All things were seen through the lens of his interests and perseverations, i.e. When seeing an ice cube melt he started to talk about Antarctica and icebergs and whales and fish that live in the arctic and the map of Antarctica, etc. Seeing a fish he began to digress in sentence fragments without regard for me or communicating something to me i.e. āA whale doesnāt fly in the water, only a plane. If the plane sinks it will not fly. It will be at the ocean floor. If thereās a shark it will down the helicopter. Whereās a whale? A mighty killer whale in the ocean, the bowhead whale.ā
At 31, Diego continues to engage in free associations. A picture or a word or a situation will evoke a thought related to his areas of perseveration, and from there he will jump from idea to idea in rapid succession. He still loves the Arctic, Antarctica, fish and whales, by the way. I love him, as he says, ālike a mother whale.ā I used to view Diego’s speech pattern as aberrant and negative largely because of how evaluators framed it . Now, I consider it beautifully disordered.
The story of Diego, as told through his educational records, ended when he aged out of formal education at 22 . At that point, how he compared to the norm in āallā areas ceased to matter. I now know it never mattered much anyway.
*The underline, bold and and caps are added. Also, the evaluators’ writing wasn’t corrected for grammar or punctuation.