My head felt like it was going to explode when my son was diagnosed with autism in the mid-1980s. The diagnosis explained why he was flapping and spinning, but the “A” word stuck in my throat. Some parents, mostly mothers, have told me they were relieved when they finally received an official diagnosis because they knew something was wrong. Regardless of where one fits on the spectrum of reactions, the mind goes fast forward to the future and can't help wondering what will happen:
Since autism is invisible and diagnosed through behavioral observations, it is natural to focus on behavior. It’s natural to imagine that if we can make the behavior go away or at least minimize it, then a child may recover. Some of the behaviors of our children on the autism spectrum can also be so disruptive that this becomes our entire family focus. This article will attempt to provide a perspective on these questions which trouble most parents.
Initially most autism treatment focuses on reducing problem behaviors. Our children need to learn adaptive behaviors to be accepted by others and to bond with their families. The positive behavior supports approach helps parents and professionals address issues in a relatively new way. Instead of using traditional rewards and punishments, positive behavior supports assumes that all behavior is communication. Parents, teachers, and therapists collaborate to determine what the child is attempting to communicate and teach skills and alternative behaviors to meet the child’s needs.
What we know from recent research
Children with autism grow and mature as we all do; the symptoms may change but rarely disappear completely. Recent research from Deborah Fein and colleagues (2013) shows that a small percentage of children diagnosed with autism does move off the spectrum. According to the researchers, these children learned to communicate and socialize much like their typically developing peers, but they remained mildly affected by conditions, such as anxiety, depression, or impulsivity, which slightly affected their social functioning. The children who lost their diagnosis had milder symptoms in early childhood, learned to process faces through intensive intervention, and had fewer self-stimulatory or repetitive behaviors.
Seltzer and colleagues (2000) found a pattern of change from childhood to adolescence and adulthood. 82% improved in communication and social interaction, and 55% showed less repetitive behaviors. These researchers concluded that the symptoms of autism lesson in severity over time and that the best outcomes occur for those with higher IQ scores and better language skills. Overall this shows compelling evidence that the troubling behaviors parents struggle with are likely to change over time. These research findings are cause for optimism if supported by adequate services in adolescence and adulthood.
Another team of researchers, Taylor and Seltzer (2010) found overall improvement in autism symptoms and internalized behaviors in young people over a 10 year period. Rates of improvement slowed after leaving school though improvements did seem to continue, just not as much or as quickly. By age 21, young people with autism who do not have an intellectual disability stop receiving services. After that point in time, these individuals improved at a slower rate than individuals with intellectual disability who still had services. So given what we know today about how children with autism grow and develop, with adequate resources and support, it is realistic to expect progress and lessening behavioral challenges.
Surviving and Thriving
In the meantime, while we wait for the hoped for change, how do we live with the uncertainty of what the future holds for family and child? How do we handle the next tantrum or meltdown? What about the struggle for services? Here's the approach that I have developed for myself and that I teach families through my writing, speaking, and counseling:
Like the weather, your unpleasant feelings will pass.
Sometimes it may seem that no progress is being made; the child may take 2 steps forward, 1 step back. Over time our children do grow and change, just like everyone. It takes hard work by all involved—families, professionals, and children, teens, and adults living with autism. Sometimes it helps to remember that we are all doing our best.
Facing the Future
Parents cannot control the outcome for any child, but we can have a full and rewarding relationship with a child growing up with autism. There is solid scientific evidence that individuals with autism continue to develop in adulthood. This makes it reasonable to expect continued slow steady progress just as with typically developing adults. We never stop being parents—our job just slowly changes through the ages and stages.