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Boston: Rabbi struggled with autistic son; fears the future for adults with autism

Feb 20, 2022, Aish: Autism’s Growing Problem https://www.aish.com/jw/s/Autisms-Growing-Problem.html?s=nb&p=n1&mobile=yes

As kids with autism become teenagers and adults, fewer and fewer services are available to help them and their families. ________________________________________ In March 2020, my wife and I dropped our teenage son off at a residential school for kids with autism in Boston. It was the day after Purim – just before the world seemed to grind to a halt – and our race to get there felt a little too much like a thriller movie. Deciding to send our child away for school was hard enough; leaving him there without knowing when we could be together again was agonizing. Covid didn’t help. For the longest time after that day, we could only visit our son masked in the school parking lot (I’ve still never been inside his room). But considering what we’d been through to secure his enrollment, and how clear it was our son was thriving, it all felt worth it. Every time I got in my car to return home after a visit, I felt a surge of gratitude – and a good amount of fear, knowing we’ll face a similar race to get him somewhere safe in just a few short years. While my family is currently in a happy place, I know all too well that others out there are struggling. For a long time, I didn’t talk much – if at all – about what was going in my home. I worried that I’d be violating my son’s privacy, or that I’d puncture the image of the happy-go-lucky rabbi I’d cultivated online and in my community. When I open up about our journey with others now, I’m still sensitive to the fact that I am speaking on behalf of my son. But I began sharing because I know the loneliness endemic to parenting a child with autism, and because I thought our experience navigating the world of schools and services could serve as a road map for others. And I keep sharing because while my family is currently in a happy place, I know all too well that others out there are struggling. The A Word When our sweet, silly, second-oldest child missed developmental milestones as a toddler, we figured he might have some manageable learning disabilities we’d have to deal with as he aged. At the time, we easily managed to secure lots of practical help for him, including occupational, physical, and speech therapy, mostly through the large, impressively comprehensive service providers in our Orthodox community. On occasion, we heard the “A” word, but it was always a whisper, rather than something firm and settled. When he was 7, though, he experienced a major regression, and the A word was no longer a whisper.

Soon after his formal diagnosis, we dove headfirst into the treatment wormhole. We pursued every treatment option we’d so much as heard of, from the holistic to the mainstream medical. We didn’t know anything about how fundamentalist some regimes (and their champions) could be, how much snake oil was out there, or how rigid and dogmatic some providers were: We were in utter survival mode, and tried everything we could.

We tried to put on our best faces and push through. This was especially difficult as we were the communal leaders of a small, beloved synagogue and Chabad house on a college campus in the heart of hipster Brooklyn, so we felt it was our job to show up and serve the cholent wearing smiles, no matter what was happening at home. Eventually, we came to a place of acceptance (as with most things in our marriage, my wife led the way on that front – I was still the clueless chauffeur for a while). We realized our son didn’t need to be fixed; he wasn’t sick, he just needed help in ways we hadn’t originally anticipated. As long as he was happy and healthy, we would be happy, too. After finally finding a school he loved – his seventh in as many years – we at least felt ready to live our best atypical life. We realized our son didn’t need to be fixed; he wasn’t sick, he just needed help in ways we hadn’t originally anticipated. But the stability was short lived: A few years later, when our son hit puberty, everything changed in a nanosecond.... One day, my son’s school told me I needed to stay within a three-block radius during school hours, in case they couldn’t control him. The administration then started to dance around the idea that he might need a more structured environment. (Later, the principal, who is a friend, told me she often sees these moments coming, but feels uncomfortable addressing them directly with parents, especially as she has few practical alternatives to offer them.) We got the hint and pulled our son. My son’s school told me I needed to stay within a three-block radius during school hours, in case they couldn’t control him. My wife was the first to realize (again) that our son wanted and deserved more than what he’d had so far. He really needed space, adventure, and a greater sense of independence – when I took him to the park and he sat on the swings, it was obvious to both of us that he was too big. It was around this time that we started to think about sending our then-14-year-old to residential school. But considering residential school and securing a spot are two very different things. All the suitable facilities we looked at had miles-long waiting lists, so we had no choice but to hope that nothing catastrophic would happen before we could secure him a spot. Out of desperation, we had him admitted to a large medical hospital in the city. Over the course of a week, they performed multiple tests, hoping to pinpoint the cause of his earlier regression, and then told us the results were inconclusive and we could leave. When my wife began to voice her concerns, the young psychiatrist simply walked out of the room, whisking past the enormous bouncer who had been assigned to stand at the door in case our son became a danger to those around him.

Eventually, one meltdown landed him in a pediatric psychiatric ward, a prisonlike setting where we could see our son for only one hour a day. Leaving him there ran counter to all our natural instincts, and the guilt and shame my wife and I felt was overwhelming. But even though we were terrified, our son grew to feel safe there, and even seemed to enjoy the (relative) freedom and autonomy he had.... New York state still doesn’t have a single therapeutic setting for people with autism in crisis. Despite the fact that it was better than it seemed at first blush, the psych ward was not a suitable long-term placement for my son, or for the other neurodivergent patients there. Though the staff were loving and understanding, none was trained in issues specific to autism. They didn’t have the time, knowledge, or resources to teach these kids life skills or to further their schooling. And yet even as I write this now, New York state still doesn’t have a single therapeutic setting for people with autism in crisis.

The social workers on staff at the hospital would keep our kids there for as long as insurance could pay, fully recognizing that eventually they’d be sent back to the same environment in no better shape than when they’d been admitted. ...

When I was told that teachers or counselors couldn’t handle my son, I sometimes wanted to respond that if the staff couldn’t handle the kids, maybe get new staff, not new kids. And yet despite my heated reaction, I recognized that acquiring and retaining staff for what are essentially low-paying, unglamorous jobs is a significant feat (this problem of attrition also transcends the Jewish world—because of a complex web of factors including high levels of stress coupled with often abysmally low pay, special education teachers leave teaching at almost double the rate of general education teachers). I also couldn’t blame the schools, camps, and overnight programs for not being able to offer services that no one could offer. If the entire bureaucratic apparatus of New York state couldn’t figure out how to meet the needs of this population, how could any one institution or community?...

After a subsequent hospital admission, we finally learned that a spot had opened up at a school in Boston, a wonderful place that offers instruction in traditional subjects as well as teaching social and life skills. Even as restrictions have eased up a bit, it’s still been hard to see our son less often than we are accustomed to, but he’s developing into a real mensch, and I credit the school with nothing short of saving his life.

The process of getting to where we are today was aggravating, isolating, and rife with uncertainty.

I’ve even started training to become a certified IEP coach, so I can provide more formal advocacy in this area. My wife and I have also been involved in discussions around educational accessibility at high levels of government in New York City, agitating for change on behalf of families whose children have been either effectively denied schooling or who’ve had to shoulder far too much of the cost.

While our family is currently sailing in calm waters, what I see ahead is a storm: the looming housing crisis for autistic adults. Or perhaps “looming” is the wrong word: When I asked one of my friends in our foundation’s network recently if a housing crisis was coming, he responded, “Rabbi, it’s here.” In 2020, 1 in 54 children qualified for a diagnosis of autism spectrum disorder according to the Centers for Disease Control and Prevention, a 10% increase from the already-high 1 in 59 in 2014. One day in the near future, these kids will grow up, and the higher support population will need somewhere to go.

While our family is currently sailing in calm waters, what I see ahead is a storm. My son will graduate at 21, and will likely move into a group home, yet currently there are almost no places in suitable facilities. Waiting lists stretch for years, and while individuals sit around hoping for spots, they lose the skills they attained in school. What good are billions of dollars spent on early intervention if we don’t follow through? Parents like me spend years worrying over what will happen to their children when we’re gone (this past year-plus has thrown this problem into starker relief: I know of one adult with autism who lost both parents to Covid). And sadly, the lack of availability can sometimes mean people end up in inappropriate settings, where they are isolated, neglected, or even abused.

This crisis is one happening all over the world: In Israel, a group of parents, advocates, and people with autism gathered outside the Knesset in October to protest the lack of vocational opportunities and services for autistic adults. Organizer Emanuel Cohen, whose 22-year-old son is autistic, likened the experience of losing services to being “pushed out of a helicopter.” People with autism need more invested in their housing, job training, transportation, assistive technology, and independent-living facilities. A variety of options is the key: Though many hold strong opinions about what is the one and only right institutional structure, I believe that for a population this diverse, one size doesn’t fit all. During my networking in this space, I’ve been inspired by the ingenuity I’ve seen, whether it’s in planning smaller “supportive apartments” where residents live in their own units but can take advantage of the communal spaces for socializing, or the numerous kibbutz-style villages in Israel where autistic people can acquire vocational skills that go far beyond the regular grocery-bagging or shelf-stocking. ...

Of course, there is no way to address the emotional and practical needs of every single autistic individual, because individuals with autism are just that – individuals – and no institution can account for all the variation in human personality and desire. But there are gaping holes in what high-support teens and adults with autism are offered now, holes we are equipped to fill, if only we prioritize doing so. The determination and vision are there, the need is great, the potentials enormous. The only piece missing is the execution. Our communities have been so successful in meeting the needs of small children with autism and their families. Let’s carry that through their whole lives.