Saturday, April 11, 2015

Autism diaries: between "glimmers" and "miracle cures"

Towards the end of last calendar year, I posted the following questions:

The SAT Critical Reading score of Applicant X is 3/8 of his SAT Math score. There is a 500 point difference between the two scores.
1. Assuming that Applicant X grew up among native English speakers, what is his likely diagnosis?
2. Should you admit him to your engineering school?
The schools in question have now given us their answers, but first, a bit of background.

When J was four years old, he was downgraded by a autism specialists at one of the top autism research centers, after an extensive evaluation using the then-new ADOS tool, from PDD/“mildly” autistic to “moderately” autistic. One of the evaluators suggested we focus on life skills.

“He already has life skills,” I said. I described how J had figured out, on his own, how to operate the bread machine, and how he had recently tracked down an apple slicer at the grocery store so he could slice his apples the way they did at school.

The evaluator looked momentarily surprised. But then, delicately and diplomatically, she explained that “There may be glimmers.” Glimmers of specific abilities. She didn’t need to elaborate: we’d all seen Rain Man. Clearly she was thinking of parents who observe their 2-year-olds writing phrases like “FBI warning” with sidewalk chalk and assume that all would be well; kids who turn into adults who can tell you, in an instant, the day of the week of your great-grandfather’s 40th birthday, but can’t make simple purchases or pass job interviews. Equally clearly, I was not the first parent whose hopes she’d had to check with this reality.

But rather than life skills, we opted for a language support classroom, a year of neurofeedback, years of classroom-based tss support, years of daily extracurricular social and academic tutoring, and about three years of training in all 109 lessons of GrammarTrainer. By 6 J was functioning OK in mainstream classrooms, and by 16 he was fully included, with no tss support, at the first school to welcome rather than fear him--which also happens to be the best math and science magnet in the city (and one of the city's 3 top schools over all, with some of the best teachers I've ever seen).

So what has our moderately autistic four-year-old turned into? Among other things, a high school senior with high scores in math and computer science and writing skills not far below the neurotypical average. With a great sense of direction and extensive knowledge of the city transit system; with extensive experience conducting independent transactions at stores and negotiating fan visits and decommissioned fan donations from neighbors; and with hundreds of dollars earned through snow shoveling, yard work, household repairs, and, (somehow!), Google Ads, he has life skills galore. Such are his “glimmers.” But this is no miracle cure. J’s diagnosis hasn’t changed: recent tests confirm that his autism is still, not “mild,” but “moderate”; he still lags far behind in language comprehension, social skills, and emotional maturity.

So is he ready for college? 15 years ago, no one, even his hopeful parents, would have predicted it, but the answer, according to three different admissions offices, is yes!

8 comments:

Anonymous said...

It must feel great to know that all your years of hard work have finally paid off. Good for you for never giving up on your son. If only all parents of all kids worked as hard to help make sure their potential isn't wasted.

ChemProf said...

Congratulations, J!

Anonymous said...

Yay!

bj

Barry Garelick said...

Happy for you and J!!

C T said...

Congratulations!

Do you think J could someday develop ceiling fans that automatically balance? Summer is coming, and it's so annoying that the fan in my girls' room gets so wobbly at high speeds. Doesn't it seem logical that those would be designed to be self-balancing? But I'm always seeing noisy, wobbly ceiling fans around. Maybe I just hang out with lower-income people who buy low-end ceiling fans....

Anonymous said...

Congratulations to you and J! You have all worked so hard.

I hope the college of his choice has at least one ceiling fan.

Thank you for sharing your journey, thoughts on education, and insights on autism.

Katharine Beals said...

Thanks, everyone, for your kind thoughts! The journey continues...

kcab said...

Yay and Congrats!

I think you should let the autism research center know, though I doubt they have any mechanism to learn from the information. Someone, somewhere, should gather the info and apply some corrective feedback.