8 key things I learned raising a child with autism: Tips from a psychologist

This guest post is from Anne K. Ross, the pen name for an award-winning writer and school psychologist with three decades of experience working in public schools in Northern California. Anne is the mother of two young adult sons; her oldest has Asperger’s. She is the author of the new book Beyond Rain Man, which has received rave reviews.

I’ve been a school psychologist in public elementary, middle and high schools for a little more than thirty years, but when my oldest son, Matt, was finally diagnosed at age eleven with Asperger’s, I was shocked and immediately embarrassed that I hadn’t understood that Asperger’s was part of the autism spectrum, and that the spectrum was so broad it included this thing I didn’t even know how to spell.

I quickly learned that even though Matt was smart and a good student, his tantrums, inflexibility and tactile defensiveness were all part of the syndrome. We finally understood why he could be so black-and-white and rule-bound. Why he got stuck on the way he thought things needed to be. Living with a kid with Asperger’s and working with kids with autism, I learned about the breadth of the spectrum: how no kids looked exactly the same, how it is really a genetic roll of the dice that determines what strengths and weaknesses show up in individual kids. I've also learned a few strategies over the years for helping my son—and our family—get through the rough times.

It’s tactile defensiveness, not a lack of love, that makes some kids on the spectrum resist hugs and kisses.

Matt often brushed off our embraces, preferring strong squeezes with advance notice that they were coming. Once, when I told him that we were not joining our extended family for Thanksgiving that year because they were meeting on the East Coast, Matt was relieved, but not for the reason I expected (that it was boring to have to sit and talk with relatives one only sees every other year). He set me straight: "They’ll be hugging and shaking hands and everything." He shivered with repulsion.

Sensitivity to touch causes physical discomfort and even pain. Try imagining the feeling of cutting a fingernail too short. Now imagine that feeling all over your body. A fourth-grade girl I worked with wore lots of colorful combinations of clothing that were a few years behind the current style. When I interviewed her mother, she told me she bought used clothing for her daughter because it was the only clothing soft enough for her. When her daughter was a toddler, the girl had complained one day of "bees stinging" her arms. Later that evening, when her mother pulled off her daughter’s shirt to get her ready for bed, the little girl smiled for the first time that day. "No more bees," she said.

Matt worked with an occupational therapist, who taught us a brushing and joint compression practice to help with tactile tolerance. And, with our pediatrician’s permission, we let Matt play in the snow in his long-sleeved tee shirt without a jacket. Matt still prefers shorts, but he can tolerate jeans now and he’s bought dress pants for job interviews.

There’s good reason for some kids' lack of eye contact.

Research at the Vanderbilt Brain Institute has found that children with deficits in sensory processing have trouble processing visual and auditory information at the same time. It’s been compared to watching a badly dubbed foreign movie, with the sound and video not matching up. This may explain why some kids with autism cover their ears when overwhelmed, and why some kids don’t use eye contact when listening. Instead they look elsewhere. Once my son and I were having an argument, and I was shouting about something when he started to laugh. This, of course, made me yell louder. "What are you laughing at?" I shouted. Matt smiled. "Your lips look funny right now," he said.

When he was a baby, Matt seemed to stare at the outline of our heads instead of at our faces, but by the time he was talking and gesturing, his eye contact did not look unusual. I didn’t even know he was looking at my lips sometimes. In my work, I see many autistic kids who have typical eye contact. Some have learned from their parents’ or therapists’ reminders to look at people. Some look directly at my eyes, some look at my neck and some stare hard without looking away as expected during conversations.

Routines rule.

Routines and advance warnings can alleviate anxiety about the unknown and unexpected changes. Before Matt could read, we drew pictures of our weekend schedule so he would know what to expect. Later, we moved to checklists and calendars and bought him a wristwatch. When watching TV one night, our family cracked up when the Monk character said, “I don’t have a problem with change. I just don’t like being around when it happens.” We all stared at Matt, and he laughed the loudest.

Sarcasm and other figurative language often needs to be taught.

Humor, idioms and metaphor may need to be explained and taught to kids on the spectrum. I can often tell which families use a lot of sarcasm at home because their kids are good at understanding it. At our house, we used plenty of sarcasm, and we also read to our kids all the time when they were little. Children’s books are full of silly rhymes and plays on words and we talked about double meanings and puns. The Amelia Bedelia books were a hit in our house for a time. We suspected that given her funny literal interpretation of language, she might be somewhere on the autism spectrum.

Matt’s being super literal could make me want to scream, but it could also make me laugh. This is a conversation between Matt when he was about twelve and a psychiatrist who was evaluating him for a medication trial:

Psychiatrist: Do you know your name?
Matt: Yes.
Psychiatrist: What is it?
Matt: Matt Ross.

Psychiatrist: Do you know what city you’re in?
Matt: Yes.
Pause.
Psychiatrist: What is it?
Matt: Oakland.

Psychiatrist: When’s your birthday?
Matt: March tenth.
Psychiatrist: What year?
Matt: Every year.

Don’t let your family get isolated.

For years, we felt like we were the only family with a difficult kid. Because of Matt’s tantrums and what looked like rudeness, Patty and I had no dinner parties, no barbecues, no pizza with other families. We were hiding out, waiting for the tempests to pass, hoping we’d rejoin the social world again like we did when the kids were babies and toddlers. But with a kid we hadn’t quite figured out, and our family desperate to find its way, we hunkered down in our cave, just trying to survive.

A colleague recently told me she found it embarrassing and exhausting to take her young son with autism to the park. But when she asked another mother at his special preschool if they could get their kids together, she could finally stop worrying about what other people thought. It didn’t matter what her son did, she wouldn’t be judged. She could finally relax for a minute in the park with another mother. She had begun to find her community.

Now parents can find other parents at their children’s schools, on special education parent email groups, at Meet Ups, at community support groups, on social media and at online gatherings like My Autism Team. Just knowing that we’re not alone can be comforting; sharing information with each other can be empowering.

Your expectations will change, for the better.

For years I believed my son would follow in my footsteps, attend college, get a job to support himself, have a family. Then I began to worry he would do none of those things and would instead become depressed and lonely.

A friend told me about her brother-in-law, a grown man recently diagnosed with Asperger’s. He worked as a software developer, lived alone in a high-rise condominium in a big city and competed in bicycle distance races on weekends. He did not date and had only one true friend. He spent more time with his bike than with people. “Is he depressed?” I asked my friend. I couldn’t imagine a life without a constellation of friends, associates and colleagues. My life was full of people who recharged me. I’d be lonely, and I worried my boy would be lonely. “Oh, no,” she said. “He’s perfectly content. I think he gets stressed when he has to be around too many people. If he’s ever depressed, it’s because he has to miss a bike race because his company is having a picnic.”

It was a relief when I finally realized my son would take his own path. And it might not include a prestigious college, or maybe any college, and that he might or might not marry or have children. It would be his life. And it would be fine. He was from me, but he was not me, and what made me happy did not necessarily make him happy.

In a flash, I could see my son in ten years. Not in a hospital under a suicide watch, or living in the transition program we’d checked out, but in his own place doing whatever it was he loved doing. I could see him heating up the same frozen dinner every night, and I could hear his voice over the phone when he said, “I’m fine. You worry too much.”

The autism spectrum is wide and wacky and wonderful.

Although people on the spectrum share difficulties with social interaction and communication, sensory integration, and with flexibility and regulating their emotions, no two people on the spectrum are exactly alike. This can make it difficult to diagnose autism spectrum disorders and therefore many children and adults still go undiagnosed or misdiagnosed for years instead of receiving supports or services early, when many of those do the most good. Recent research suggests that many people with autism are diagnosed with ADHD initially.

I want parents and professionals to have a better understanding of the spectrum, both the positive characteristics and the more challenging, many of which are often hidden. Children with less obvious behaviors can still have pretty significant needs.

This is important especially in schools where parents often need to advocate for their child’s individual needs. Good teachers use tons of visuals: templates, models of expected work, schedules, outlines and visual mapping to help students get organized and learn. They keep homework to a minimum because many kids on the spectrum are exhausted from the school day, and some have social skills classes and other therapies after school. Working as a true school-home team is best for kids.

See the upside.

Asperger’s and I have an uneasy, ambivalent relationship. I do not love Asperger’s, have never loved it and am pretty sure I never will love it. Asperger’s has from time to time stolen my child from me, has stretched my relationship with him to the brink of irreversible damage too many times. It has forced my son to work harder to manage almost every detail of his life, and I have resented that. At one point, I believed Matt might eventually turn his experiences into a spiffy college essay proclaiming how his Asperger’s syndrome made him tougher, more resilient and more deeply connected to us, his loved ones, because of the hardships we’d all endured. Maybe someday he will indeed feel that way, but to me now, that thesis is nothing more than a sappy movie of the week.

I anticipate my feelings will change as he grows into adulthood, because he and I can already talk about The Asperger’s as if it is something outside of him, something with control, but not total control, over him, something he is learning to battle when required, accept when prudent and finesse as necessary. He appreciates the qualities that Asperger’s may give him, like his contentment with being alone (something I discovered when I was much older) and his ability to focus intently on what is important (to him), a quality that he believes comes from his “not needing as much variety as most people.”

We can now joke that The Asperger’s is stuck on a topic, or The Asperger’s wants to trash the house, or The Asperger’s is not so good at keeping a conversation going. But more and more, I see less of The Asperger’s and more of My Son. I recognize the skills that Asperger’s gives him, and the ways he has learned to circumvent the challenges it causes him. I am finally done cleaving and have begun the process of integrating. We have all come so far.

Adapted from Beyond Rain Man: What One Psychologist Learned Raising a Son on the Autism Spectrum by Anne K. Ross; Leatherback Press.