November 20, 2007

Last spring, I had a troubling conversation with my adolescent son who is on the autism spectrum. He had taken a mainstream class for the first time in years, having been in mostly small special education classes since third grade. I asked him which classroom felt right for him. “The kids in the resource room are too immature. The kids in the other class don’t have my mental disability.”

It is distressing to hear your child does not feel like he belongs anywhere. Social isolation is dangerous for teens, and I feared where it might lead our boy. Hours spent alone in his bedroom surfing the Net or playing video games was his answer but not ours. The lack of social development was one of several concerns we had about whether his educational plan was appropriate. That conversation, followed by others like it, kick-started my search for a different educational alternative for him.

Locally, I was unable to find a better option for the boy who hovered between the Special Ed and mainstream classroom settings. Days before school started this year, I learned of a boarding school in rural New Hampshire that for 60 years has taught bright boys who cannot function well in typical schools. Staffed by nonspecial education teachers who teach in small groups, it represented a paradigm shift. With strong encouragement from parents whose son had flourished there, we enrolled our son, with prayers on our lips and a new loan to pay for it.

Fifty-one days after I left him at school, I saw my firstborn again on parents’ weekend. He was 2 inches taller and 10 pounds lighter and had clearly matured. “I was angry at you for leaving me here,” he said after he released me from his bear hug. “Then I realized why you did it.” “Why?” I asked. “Because you love me.” I was stunned that an adolescent male, particularly one with a social/communication disorder, would express himself this way. Mostly, I was thrilled that he seemed to have found his place and that he understood the reasons for his unanticipated move.

His highest priority for the weekend was for us to meet his new friends. Max is a 6-year-old with autism. His mom is a dorm parent and clearly my boy’s surrogate mom. She leads the daily hikes our formerly electronically addicted couch potato now enjoys. She was quick to share how much she appreciated our son’s kindness to hers. Equally grateful she’d embraced my child, I felt an instant bond with her. My son confirmed that he and Max were tight. “He is like the little brother that I always wanted but never had.” All weekend, I watched our son practice his social skills on the little guy. I saw his kindness, humor, concern and affection. My parting words to him: Now let the big guys — your peers — see these qualities in you, too.

It’s early yet, but my instinct is we’ve made a good choice. While academics are tough for him, his teachers are patient and hopeful. We were thrilled to learn that by week six he was learning long division, after spending years working mostly on time and money worksheets. His math teacher thinks he could learn pre-calc. He is learning to speak Spanish. Teachers all reported that after a month he started to emerge from his shell, to participate, and to relax.

With such dramatic improvement occurring so quickly in a different setting, it’s hard not to question whether we failed to understand our son and help him to reach his potential. It doesn’t feel good to second-guess a system we partnered with for years. Yet, when I look in my rear-view mirror, I wonder about the accuracy of the diagnostic tools that were used to assess our son’s abilities and his IQ. I wonder whether schools are offering the best academic programming to prepare students with ASD for independent lives. I wonder whether I have the only son who learned to play Yahtzee in a social skills class but didn’t have a friend to play it with outside the classroom. I wonder how students with a social/communication disorder can learn meaningful social skills in a classroom that actually translate into friendships.

I have many questions but few answers. I’m not sure whether our experience is the exception or the rule, although I’m guessing it’s not uncommon. Most families can’t or won’t — and shouldn’t have to — send their kids away, even if they reach our level of desperation. So if our experience is not an anomaly, what steps are professionals willing to take to critically evaluate and improve upon the diagnostic tools and programs that are so fundamental to our children’s education? How can parents help to change the paradigm? How can taxpayers get the biggest bang for the buck with special education dollars? With 1 in 150 children being diagnosed with ASD, it’s important to get it right.