There’s a switch that was flipped with Jewel this year, her first in middle school. She’s more accepting of change, more engaged and much more willing to go with the flow. In looking back at all of what sparked this evolution, there’s one thing in particular that’s extraordinary in its ordinariness.
Jewel is particularly obsessed with one class. She’s named it like a team, and identifies with it so much so that when she does something, it’s often because “hey, I’m a 6-7er.” Why this class? It’s led by a gifted teacher who cares about what she teaches and does so in an interesting manner, and Jewel loves the subject matter. But there’s something else. In the first week or so, a boy in this class said to the teacher offhandedly: “You mess with one of us, you mess with all of us.”
Jewel has never been part of a team, never had a “squad” per se, and this appears to have had a profound effect on her. For the first time, she felt as if she belonged, was part of a group, and that someone, actually lots of someones, had her back. She was included. A moment in time, a remark that boy and everyone else probably have long forgotten, meant everything to her.
So yes, there’s a maturity and a lot of other positives, but first and foremost is her believing she’s part of a whole, not the different one. Because of her past needed supports, aides, modifications and accommodations, she’d felt separate from the group. She rarely does now, and has learned to advocate for herself when she does feel as if a teacher is trying to “separate her out.”
There’s other ways she’s getting this message. A school administrator often reaches out to Jewel with a fist bump and advice. This goes a long way in what I call “singling her out by including her.” He doesn’t treat her any differently, so she doesn’t feel different. And he sets the tone for her peers to not treat her any differently.
This inclusion issue looms large as we face another summer of uncertainty. Because structure and routine are so important to helping autistic kids build skills toward being more self-reliant, what is seen as “freedom” to others can be a special kind of hell for us. We lose the structured environment of school and Jewel’s everyday social interactions with her peers.
And yes, I and other parents of autistic kids can “just sign them up” for camps and sports and recreational programs and the kids will get that structure and interactions, right? If only it were that simple.
Most of my attempts to find programs and activities to make Jewel feel included (including a city-run gymnastics program and a summer theater workshop) did not go well, suffice it to say. The vast majority of such “mainstream” sports and other programs don’t have the support systems in place that schools provide. It’s a catch-22 that all parents of autistic and other nonneurotypical kids face: the kids need to build social skills, but the places and activities that would help them do so aren’t equipped to do so.
Here’s what I mean. Part and parcel of autism, to vary degrees, are an inability to process multistep directions, sensory sensitivities, issues with adapting to change in routine, and especially troubles with “reading” people and responding to nonverbal cues. Those guiding these kids, whether it be parents, teachers, coaches, program directors or others, need to slow it down, break it down, and allow the kids to catch up, while placing demands on hold. The key part of this is that if that “front-loading” and guidance is not given, there’s a great risk of Jewel and others becoming so frustrated and overloaded that a meltdown occurs.
So let’s say Jewel is on a soccer team for the first time and is at the first practice. The coach starts going through what the drills will be, what’s expected, when the first game is, who’s going to be on what practice team, when there won’t be practice, what the parents need to bring, etc.
Jewel, on the other hand, came into this first meeting worried about one thing only: what about the clothes? In her head, as the coach talks, it’s: “Will I have to wear shorts or can I wear leggings to practice? Will the uniforms be itchy and not stylish? What color will they be? I won’t wear them if they are the wrong color, so you need to tell me NOW.” When the coach doesn’t address these concerns, Jewel doesn’t hear anything else. And she is lost when the coach then says, “Go line up.” And she’s embarrassed when all the other team members look at her when she doesn’t line up. And it escalates, because the coach has all these kids to direct and can’t figure out why she isn’t doing what she was told. And there you have a meltdown.
At schools, there are supports to help Jewel succeed in a mainstream setting and help her learn to advocate for herself, learn these skills and become self-reliant. In the mainstream world, those supports are negligible. So autistic kids miss out on the very social opportunities that would help them most.
One solution would be private companies and camps (even, a mom can dream, cities and communities!), offering “blended” sports and recreation programs in which nonneurotypical and neurotypical kids can enroll. There would be extra supports and knowledgeable staff, and tolerance and inclusion is built into the business model. This is another example of “singling out by including” them.
Another solution is to make existing public and private programs more flexible and accommodating. For example, I found a surf school last summer that I was able to front load about Jewel’s autism and what to expect, and it enthusiastically said, “No problem,” and followed through. It’s a win-win, because we’ll be going back this summer and Jewel will get to do something she really enjoys with her peers … she will be included. And if any shark messes with one of them, it will mess with all of them. Wait, what? Hm, looks as if I’ve got to do some more front-loading, this time on the shark situation.