Sunday, April 26, 2015

Wait and See

As Autism Awareness Month comes to a close this week with the end of April, the flurry of media reports will likely end, and autism awareness will be primarily put aside for another year except for those who live with autism on a daily basis. After twenty years of researching autism, trying to find ways to help Alex, I’ve found bits and pieces that have confirmed my suspicions and that have made some improvements along the way. However, no real breakthroughs in autism research have occurred in the past two decades. Debates still linger regarding the causes, best treatments, and even whether the increase in autism rates is due to more cases or better diagnosis. Basically, most of the research being done and reported isn’t making much of an impact on the day-to-day life of those families whose children have autism.

Nonetheless, we move forward with hope. When Alex was first diagnosed with autism nineteen years ago, I remember a statement from the first book I read on autism that has stayed with me all these years, more than any other piece of research I’ve done over time. Essentially, people with autism usually continue to get better as they get older, even into adulthood. When Alex was little, the theory of windows of opportunity for learning, emphasizing developing the young child’s brain, was popular. Certainly early development is important, and early intervention does help children with autism. However, neuroplasticity research has shown that the brain continues to develop over time, even into adulthood, well beyond that window of age four or five. Shortly after Alex’s autism diagnosis at age four, I felt a frantic sense of trying to help him master skills and pull him through that window before it closed forever. Thankfully, scientists have recognized that learning is a lifelong process, and indeed, “old dogs” can “learn new tricks.”

Along with remembering that people with autism tend to improve over time, I also keep in mind the wisdom of a former student. Shortly after we found out that Alex, indeed, had autism, I told my seventh grade honors English students that I had been absent because my son was being tested and was diagnosed with autism. In addition, I explained that he also had hyperlexia, a rare condition where children have advanced reading skills at a very young age along with problems with language and social skills. Specifically, Alex had taught himself to read by the age of three, yet he could not speak well. As they sympathetically listened, I told them that he would need speech therapy and that we hoped he would get better in time. Perhaps sensing my worries, one of my brightest students reassured me, “But, Mrs. Byrne, if he can read, he can do anything!” Over the years, her earnest optimism has lifted my spirits, and Alex’s ability to read has not only helped him to learn but also has provided him with a constant source of entertainment.

After reading thousands of pages of research on autism, I keep searching for the one piece of information that will make all the difference for Alex. When I begin to think nothing new will appear, I am motivated to continue because I hear in my mind Alex saying one of his favorite phrases, “Check it out.” Like me, he knows the power of the written word and believes that he will find all the answers to his questions in books and online. I watch him Google information on his iPad several times a day and reach for his beloved reference books when some burning question emerges in his mind. Perhaps he has watched me over the years reading books and online research and has imitated that behavior, or maybe he has inherited my tenacity never to be satisfied until all the puzzles are solved. Last week, he bought a huge medical book and spent hours perusing some of its more than one thousand pages. A wonderful irony would be that he figures out the mysteries of autism before I do—that he only needed me to teach him how to do research so that he could find the answers on his own that I’d been seeking for years.

Besides the eternal hope I carry that Alex will someday be completely healed of the symptoms of autism, I move forward with the patience I have learned from raising a child with developmental delays. Patience does not come naturally to me, but realizing that Alex has to do things on his own timetable has helped me learn to wait with anticipation instead of frustration. My need to micromanage his world has been replaced with my firm belief that God is in control and will take care of Alex. By trusting God, my faith has grown in unexpected ways, and as I learned many years ago, autism does get better in time. As we move forward into Alex’s adulthood, we continue to see progress, and I fight my impatient need to wonder what the future holds for Alex. When I become anxious, worrying whether he will ever become independent, I look back on how far he has come, remind myself that God has always taken care of us, and remember the reassurance of my son, who often wisely advises me: “Wait and see.”

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:14

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