Commencement exercises are filled with lofty speeches on future paths and one person changing the world, etc. I reveled in a weekend-long college graduation for the other exceptional child in the family – the neurotypical one – and its memories still make me smile. As I struggle to stop posting proud parent Facebook items, three days out from the event – or to keep focused on work when all I want to do is look at that gorgeous picture of the lovely graduate beside her beaming parents – I think of the other graduations with autism.
Statistics of old, at least when I was newly diagnosed, suggest that 75% of autistic individuals are intellectually disabled. Surely more recent diagnoses are changing that figure, at least with all the high-functioning individuals I meet in our various groups and therapy waiting rooms. Yet my W. and J. are the more classic type, who at age 20 cannot read, struggle to count, and have mental blocks on seemingly simple items they’ve practiced for over a decade such as which utensil is a fork vs. a knife in the kitchen drawer.
The future holds a graduation for us, too – with or without a diploma, or reading, or multiplication table mastery. It’s called age 22, when the school bus doesn’t come, and transitions move to adult programs and adult staffing. J. is progressing nicely, or at least it feels that way. His self-injurious behavior appears to be greatly diminished or (I hate to type this or it may go away) extinguished. His ability to function in novel tasks, such as yesterday’s school play dress rehearsal, are improving. He’s an employee at a bakery where he greases cake pans with a paintbrush for 2 hours each week. As I explore community based adult day programs for individuals on the autism spectrum, it feels like there will be a home for J.
For W., however, the path is less clear. His sensory issues have flared lately as has a probably developmentally appropriate self-will whose assertion seems to involve power struggles over wearing shoes and shirt. Fortunately the shirt stayed on most of the time during graduation weekend, but it was none to pleasant for Mom and Dad to have to accompany him to the bathroom at restaurants while making about 5 stops across a public restaurant to tell him to put his shoes on or there’s no bathroom, or no finishing your meal. And, of course, to do so at least 5 times each meal since the bathroom is a lovely escape from whatever, as our meals grew cold and the rest of the family got to enjoy wine and conversation.
I haven’t figured out W’s needs. Certainly I can beat myself up for, say, inconsistency with many of the at home ABA style programs that we deploy here to meet a need, and then fade as the problem appears to diminish. Or, I can lock horns right in there with the power struggle, deploying my Mommy Reprimand Voice which works situationally most of the time but can’t be cloned by the respite workers and helpers – and avoids the core issue driving the behavior.
Much as I hate to admit it, W.’s behavior of late is his own graduation into a more adult selfhood and expression of his needs. Emphatically, the expression is way flawed and socially inappropriate. Yet W. has something driving the emergence of a different and changed self. Yes it’s no fun to endure the behavior and it always asserts itself when I’m busy, stressed or tired. Today is a half day and I awoke before the crack of dawn to attack the myriad work tasks before me – not made any easier by arriving home to dust and disorganization post-trip away that is beyond my tolerance level and necessitating some level of clean up for me to feel orderly in my life. I’m still not at the work point yet but I needed this moment to pull back the lens and gather perspective at W’s graduation into this latest phase.
There is a lesson in W’s behavior, and my choice – I believe it’s the path, really – is to follow where he’s leading me, listen to suggestions from experts, and hold his hand as we journey together to where he needs to go toward that better place. No it’s not the traditional cap and gown. But W. is growing and changing, and while I’m not writing a tuition check or offering advice on course selection, my role is likely way more important in his process-ing down a path of his own choosing toward greater capability and achievement.