July 12, 2013
I couldn’t help but hear the conversation between two women sitting an arm’s length away. The more boisterous of the pair had spent the holiday weekend with extended family members, including her 8-year-old nephew with autism. He would not listen and would eat only pizza, she vented. I bit my tongue as I realized her solution was to give the boy a good dose of discipline.
There was a time when I, too, would have jumped to judgment about a child who refuses to partake in the family meal, doesn’t respond when spoken to and spoils the family getaway. But thanks in part to my 22-year-old son with ASD, I now see those behaviors through a different lens.
There are certainly children who throw tantrums to get their way and who should be disciplined. But for people with autism, socializing at family gatherings and spending time away from the familiarity and routine of home can generate stress at a level I still struggle to appreciate. What would be considered naughty or anti-social behavior for people without their challenges may likely be a sign of sensory overload or the inability to cope with change.
One of my favorite sources of insight, Temple Grandin, has talked about sensory problems for 30 years. A professor of animal science at Colorado State University, Grandin is also an internationally recognized author, speaker and autism advocate. In her most recent book, “Rethinking the Autistic Brain: Thinking Across the Spectrum,” she explains that our fives senses — sight, sound, smell, taste, and touch — are the mechanisms by which we understand everything that isn’t us. If you receive the same sensory information as everyone else but your brain interprets it differently, then your experience will be dramatically — even painfully — different from those around you, she explains. “I’ve encountered people whose hearing fades in and out, so words go from sounding like a bad mobile phone connection to sounding like fireworks. I’ve talked to kids who hate to go into the gym because of the sound of the scoreboard buzzer,” she writes.
Born in 1947, Grandin initially was diagnosed as having brain damage based on her mother’s reports of, among other things, destructive behavior, inability to speak, sensitivity to touch, and fixation on spinning objects. She is renowned for, among other things, developing a deep touch pressure device called a squeeze machine to help her cope with her sensory overload and nervousness.
Though challenges to the sensory system are common in people with ASD, Grandin says researchers do not appreciate the urgency, much less afford it legitimacy. “They can’t imagine a world where scratchy clothes make you feel like you’re on fire or where a siren sounds like someone is drilling a hole into my skull.”
Sensory challenges are not the only barrier to successful visits or vacations.
Social skills are such a hurdle for people with autism that John Merges of Minneapolis has made it a focal point of his work. A licensed social worker, Merges understands after 23 years in the field that skills that are intuitive to most must be taught to and practiced by people with autism. He developed a structured social skills program that incorporates age-appropriate activities of interest to small group members. In the past nine years, “Funjoyment” has grown to include several groups including more than 50 participants, mostly male, ranging in age from 12 to 27. He and his staff facilitate weekly gatherings during which participants engage in discussions and role plays, pair up for video games, and break into small groups to play board games and bocce ball. Over the years, many have developed friendships, although it is rare for the young people to meet outside of group.
The author of “Social Enjoyment Groups for Children, Teens and Young Adults with Autism Spectrum Disorders,” Merges has watched many clients (including my son) evolve from boys to men. It’s been interesting, he says, because a number of things he expected would be big issues for them have not been and some he thought they would be able to manage have been more difficult than he anticipated five or six years ago.
More clients are driving and taking college courses than he expected. More have difficulty coping with change, organizing their lives, and managing what is often debilitating anxiety. So Merges works with clients individually to develop plans to break down barriers to employment and independent living (www.johnmerges.com). Future plans include helping clients and families to plan for long-term needs when parents are no longer able to handle them.
Six decades after her diagnosis, Grandin writes, “We’ve come a long way from the days of doctors telling the parents of autistic children that the situation was hopeless and that the only humane option was a life sentence in an institution.” She acknowledges that we have a lot further to go and that it is difficult to overcome ignorance and mis- understanding once they become entrenched in our belief system.
“I know that trying to imagine where we’ll be 60 years from now is a fool’s errand,” she concludes. “But I have confidence that whatever the thinking about autism is, it will incorporate a need to consider it brain by brain, DNA strand by DNA strand, trait by trait, strength by strength, and maybe most important of all, individual by individual.”