Most people “get” Luke upon meeting him. However, with his strange mannerisms and behaviors, they are still curious. Here are the questions I am often asked. The answers reflect only our experiences and opinions. Keep in mind that each person on the spectrum has different issues; these are specific to Luke. I hope these stories serve to illuminate facts about autism, and spur commentary.
When did you realize Luke had autism? What were the signs?
Our outstanding neurologist, Dr. Meryl Lipton (Rush Neurobehavioral Institute) has told me that Luke has autism due to a number of factors. (Speculation and science, no research has shown to be definitive). He has a predisposition by his genes, and then had a significant health event that happened in his first year of life. For Luke, it was excessive fluid in the ears, misdiagnosed as infection. He was then treated with at least 12 courses of antibiotics between six months and two years. The mothers I have talked to over the years tell me stories of serious viruses with high fevers, stomach reflux, allergies to milk, and other gastrointestinal illnesses.
So, what happens is normal brain development goes haywire. The normal pathways that should be forming have to reroute to other paths. This sounds somewhat elementary, but is true! We just say “there’s a glitch in the software.” That pretty much explains it.
A story about a diagnosis is clear in my mind, though it happened 15 years ago. Luke and another boy Oliver were in an occupational therapy session and so his mother and I went for our weekly chat. They were four and five years old, and working together with Gloria Levin. One day, the mother sobbed through the whole hour. Oliver had just received his diagnosis of autism. She said to me, “it is like a death sentence.” I consoled her, and thought to myself, “this could not happen to us."
Was Luke immunized? Do you think that had any effect on his development?
The answer is yes and no. He was immunized according to Illinois law. Luke’s developmental delays started shortly after his 18-month monster shots. His ear issues required two surgeries, first a laringotomy (tubes) and then adenoidectomy. His speech improved significantly after the tubes.
At about two and a half, Luke’s eye contact with people diminished greatly. His play was odd, and he didn’t talk. When he finally did speak, it came out as his own jibberish for at least a year. Fast forward…
After ten years of speech therapy, Luke now speaks normally, but has trouble regulating the volume and pitch of his voice. Like many on the autistic spectrum, he can not hold a conversation with more than two exchanges He just reverts back to “scripts.” This is an exact duplication of what he has heard or read in movies, books, TV. By now, our family knows them all, and we can recite the entire movie of “Little Rascals” together. “Darla, I hate your stinking guts!” That’s family fun! On the chair lift, Luke amazes his ski instructors in Crested Butte, Colorado by reciting a 5,000 word story called “Jeffrey and the Dragon,” which he saw and read (a video book) at age four. Word for word, need I say more? It has a great ending, lots of love, so let me know if you want to watch it.
He still has “body in space” issues, i.e. throwing himself on the floor to feel grounded, and getting too close to people. Standing in a line for any length of time is very difficult for him. With a disability pass, we get right in to the rides at Disney World! Auditory processing is still one of his major issues. For him, it must have sounded like being under water.
I would urge parents to always immunize their children. If I had it to do over again, I would reconsider the time spacing of the shots. Personally, I think that a barrage of shots at 18 months is a shock to the immune system.
Next up: Therapies we’ve tried, both good and bad….