Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade. And I’m so much happier this way.
Matthew puts something into words that I’ve been feeling my way towards for a while. For an autism parent early in the process, or lost in the weeds of it, this can be a challenging concept to embrace.
It is human of us to want to know what it is that we’re dealing with, so that we can feel like we know what to do about it.
And so a lot of time and effort and money and hope gets poured into an array of assessments by professionals with the goal of “finding out” what our children have. Is it Asperger’s or Classic Autism or Sensory Processing Disorder or Fragile X or that heaping pile of noncommitment known of Persistent Developmental Delay—Not Otherwise Specified. Often our child isn’t enough of any one thing to qualify for any of these labels, and we feel even more lost and desperate to understand what it is we should “do.”
Because once we have a label, professionals can tell us “what to do”, and so our time and our effort and our money and hope can get poured into an unending parade of therapies, which can never deliver exacting results, because different kids respond to them in different ways, and to different degrees, and at different stages in their development.
And so the unknown never entirely goes away.
I am thankful every day for my life with Christa. I feel like our marriage has been strengthened, not undermined, by the presence of autism in our lives.
With all the chatter about autism and divorce, I wonder whether the challenge to a marriage is not autism, but the capacity of the couple (and of each person within it) to tolerate the unknown.
For the second year in a row, the principal at our Oakland public elementary school invited me to talk to the parents about Inclusion at Back to School Night.
Our son attends the school via an autism inclusion program, set up by the district’s Programs for Exceptional Children (what many people would call Special Ed).
But as the district doesn’t get how to manage confidentiality issues, it directs its inclusion staff to act “invisible”, and to never talk to anyone about what they do, or why, or for whom.¹
As you can imagine, this creates a lot of confusion—and curiosity—among parents of typical kids who don’t know who this adult is in their child’s classroom, who some people (including the classroom teacher) are pretending isn’t actually there.
Having me, a parent, address other parents, is a way to help dispel some of the confusion and obfuscation the district unintentionally creates.
My talk went something like this:
Here at Joaquin Miller we have lots of different kinds of minds. Our students, our parents, our faculty and staff.
We all have different strengths and challenges.
And an understanding of that fact, and an embrace of it, is one facet of Joaquin Miller’s commitment to supporting the growth of the whole child.
The department where I worked at Apple hired people who were super smart and super skilled at what they did. I worked alongside people who knew how to get the work done and to get it done right.
These were who you’d turn to when you needed to find out how long something would take, or how many people you’d need. This was their training; their experience; the reason they’d been hired. No one higher up or lower down knew more about reality and time.
And whose expertise would be routinely, almost pathologically ignored.
There would not be enough time from the start. Or the task would require work an order of magnitude more complicated than the shitshow at the last launch, for which we had been understaffed and short on time and THIS close to killing each other and ourselves.
Or, most often, some new goal would be prioritized, that would result in us having even less time, or that upended everything we’d only just agreed about the way to work together. And the value of this new goal would be unclear, or irrational, or simply out of proportion with the staggering amount of disruption it would cause.
At a certain point the best people would always hit the wall.
Some would hit the wall and walk away after just one launch. Others adapted as they could a few times through the wringer, to then be smacked in the face by a decision so sloppy, so wrongheaded, so much more brainless and stupid than anything they had ever encountered in their professional lives that they’d be left speechless. And pointing.
I never saw someone scale the wall, or work their way around it. But I have seen many pass through it.
To pass through the wall takes remembering that all of the smartest ideas—including yours—will be tossed into the valley of a thousand “no’s.” It takes remembering that as smart as you are about what you do, you’ll be smarter even a week or two from now. That as you move your way past the feelings of insult and rage and get back to working the problem, that your expertise and your intuition will guide you to a better answer to the impossible task than most anyone else can find.
There are a lot of people who are super smart and super skilled at making mobile software who are having trouble right now.
I don’t believe it matters in which ways they are right and Apple wrong.
What matters is that some will walk away, and others will pass through.