What's missing there? Social activity and connection with other teens. He has no friends. FF is not currently participating in anything school related or even any community-sponsored activities for teens. (Actually, there are very few of those anyway for 17-year-olds.) He can't compete in sports, hasn't attended either of the two school-sponsored dances, and is not a member of any club. New research from Washington University in St. Louis suggests FF isn't alone in his aloneness. (See "Teens With Autism Face Social Isolation.")
As a kid with high functioning autism, FF is thoroughly opposed to activities created solely for kids or adults with disabilities. Special Olympics, Best Buddies, and adaptive classes at the Y are okay for other kids but not for him. In his mind they are exclusive rather than inclusive. And he bristles when people suggest he find a friend who also has autism or someone with disabilities who has similar interests. I understand FF's frustration. If I were in the market for a new friend, should I be limited to near-sighted, post-menopausal women with thyroid problems?
So where does that leave us? See paragraph one, above.
I believe that the majority of teenagers--whether they have ASD or not--benefit from being included and having positive relationships with friends of their own age. There are people who disagree with me on this. Teachers, some parents, and even some folks on the spectrum believe that many children with autism prefer to be alone and if given the choice, will opt to play by themselves. Indeed, when presented with an opportunity to participate in a group activity or after school event, my son Fickle Fan will now almost always respond, "No, I'm fine."
But is that because he'd rather be alone? Nope. I don't believe it for a second. It's a defense mechanism. It's become too much work to navigate the social issues of teendom. He doesn't know what to do or say. He doesn't always know the vernacular, isn't in on the issues kids are discussing, and can't always pick up on the social nuances or cues. It's tough. I get it. But it's so important. Having a friend or at least a group that would include him would help him connect, give him things to do, help him see other perspectives (or at least understand that there ARE other perspectives), and give him something to look forward to during the week.
We've tried addressing the social isolation issue in team meetings or case conferences at school. In general I think staff are open to suggestions, but for the most part they don't see it as a major issue. FF is actually well liked in his classes, they say. They've tried to assure us that isolation is the norm these days, because most teens are only connecting with one another via the internet or texting--both of which FF avoids. But I don't really buy the teens-only-have-cyber-relationships point of view. It's not what I'm hearing from the few parents of teens who I know. Yes, they text and many are more connected to their FB pages than their families, but they also meet up at the games, go out for pizza afterward, do service projects, hang out at each other's houses...
Helping build sets with the theater crew, meeting with a book club, taking pictures for the yearbook, participating in a stop-motion animation or filmmaking club, joining Habitat for Humanity (as long as they don't meet at 7 a.m or in the pre-dawn hours--a subject for another blogpost)--these are all things FF is capable of doing. But getting him to take that first step now is very challenging.
So how do I know FF would benefit from social interaction? He just returned from the annual Thanksgiving trek to visit our families in Michigan, a trip he really looks forward to every year. And, like every year, he had a fabulous time, not because of all the garlic mashed potatoes and two kinds of pie, but because he loves seeing and interacting with his cousins and uncles and aunts, playing football, going to movies, having sleepovers, hearing outrageous stories, and listening to his uncles bash the refs who are obviously biased and hold deep seated prejudices against the Lions. His cousin, one month younger than FF, now has his first job at McDonalds, so FF is now ready to go out and fill out applications. He's inspired. Those are all good things, things most teens experience as a matter of course, but that FF gets just once or twice a year.
And it's not just family FF responds to. The high school football team (I've thrown my kudos to them in a previous post), are great with FF, joking with him and helping him feel connected to the school. So I know that peer connection is important to him; I just don't know how to make it happen.
First, as always, it can't be mom or dad who suggest an activity. Parents are hopelessly pathetic, a view FF shares with probably most of his peers. I think he also suspects that when I'm suggesting something, I'm working an angle--job skills, social skills, communication, independent living. And, yep, he's right on that one. So it can't be me that initiates the suggestion. And, increasingly, it can't be a teacher, even one he trusts.
I think schools and parents are at a loss as to how to proceed once students with ASD reach high school and adolescence. Here's my wish list:
- More peer mentoring programs and training.
- The use of peers to "recruit" kids with ASD to attend a club meeting, join the choir, help out with the chili cookoff.
- Staff who can facilitate and guide social inclusion--"people bridges." (The school social worker paved the way for FF's workouts with the football team.)
- And staff at each grade level who are looking at and helping create opportunities for social inclusion and who will help encourage kids with ASD to get involved.
