As the world was caught up in one of the most memorable and significant elections in my lifetime, Steve, Ian, and I were tangled in our own private drama. But, as it is so often, the personal is political, so let me share our story.
While the nation’s votes for president were still being counted, the three of us loaded up in the new Subaru at 6:15 am with cups of coffee and egg sandwiches from Paramus Bagels on Route 17. We drove up to New Haven, CT to meet with Yale’s Child Study Team for a two-day evaluation. The $6,000 price may or may not be covered by our insurance, despite days of paperwork hell.
We first visited them four years ago, after I interviewed a member of the team for an article for The Atlantic about Sesame Street’s autism initiative, and she suggested that we bring Ian up to them for an evaluation. At that point, Ian was a student at the local middle school, where he was shut up in a room with other misfit kids. He was miserable and wasn’t learning anything.
Yale provided us with a report that showed that he was very smart, and therefore should be actually educated – crazy that we needed a report to say that, but that’s how the world works. In the end, the report helped us get him placed in another public school that was a whole lot nicer to special ed kids.
He thrived in the new setting, working his way out of most of his special ed classes into mainstream ones. He marched on the football field banging on snare and bass drums as part of the marching band. And, most importantly, he was very happy. But this is senior year, and we have no idea what his next step should be.
Middle class kids with typically developing developmental systems have a clear path ahead of them. They go to a four-year college, get a degree in something, get a job, and move on with adulthood. Now, some kids take slightly different routes to that middle class adulthood, but the paths are all clearly marked, with large billboards and staff to usher kids to that end goal. Barring some serious fuck-ups, the average middle class kid makes it to the finish line.
The alternative routes have no road signs. As I wrote for the 74 last year, high schools do not have enough guidance counselors. Those that exist are not trained about careers and higher education. And there is no incentive to provide information about non-four year colleges. There is no information about the difference between community colleges and for-profit trade schools, so some kids make very expensive mistakes.
For kids who have disabilities, the post-high school picture is even more confusing. Legally, schools are supposed to help the parents and students plan for a post-high school life starting when they turn 14, but in reality, they do nothing. When Ian turned 14, an administrator asked Ian what he wanted to do when he grows up. Ian said that he wants to own an indie video game company. That information was duly marked down on a form, without any thought about how a kid with autism was going to make his dream a reality.
Schools are required to educate kids with IEPs until 21, but it’s a grey area. One administrator just told us that since Ian has met all his graduation requirements, they were going to be done with him in June. Another administrator assured me that he would qualify for their 18-21 program. 18-21 programs are highly problematic, but I’ll save that topic for another day.
The Yale people looked him over and said that their findings were very consistent with the previous report. He’s very smart, particularly in non-verbal tasks, but too quirky to blend into a typical community college classroom or workplace. He isn’t baked yet. They do think with the right training that we can get him there, but he needs a lot more support from the school district and private resources. This report will say that he should remain in a public school setting until 21.
The unemployment rate for kids with autism, even high functioning autism like my kid, is abysmal. One study found that only 15% of autistic people with college degrees are gainfully employed. For those who are too high functioning for a day-program, which is basically a baby-sitting service, they end up at home all day without purpose or social interaction. Parents are the permanent caretakers until they die, when the state finally steps in and puts the individual in an institution.
I refuse to accept that future for my kid. So, I’m fighting it with research, expert reports, a book proposal, and the ballot box.
Last Tuesday, I voted for a kinder world that supports all people. Individualism and limited government is all fine and good for some. It is not for us. Our family needs less hostile K-21 schools, greater inclusion in higher education, friendly employment options, social services, and so on. We need a safety net. (I also voted against insanity and incompetence, but that’s another story.)
Going forward, Biden will face two options for education. He can either keep the status quo; one that rewards strong political organizations and ignores those with less political capital. Or he can make bold changes that restructures the system, so that those who aren’t on the four-year college path — which includes tons of typical kids, as well as my disabled peeps — have good options for their future.
I vote for bold change.