To shield her identity given her current occupation, 25-year-old “Stephanie” preferred using a pseudonym for this column. In the mid-’90s, a doctor diagnosed her then 4-year-old brother “Kenny” with autism.
A National Institutes of Health website defines autism spectrum disorder as causing “severe and pervasive impairment in thinking, feeling, language, and the ability to relate to others.” The severity can range across a spectrum from the relatively mild Asperger syndrome to the more severe autistic disorder.
“The biggest thing I remember about (Kenny) growing up were his meltdowns, which were severe temper tantrums involving hitting and kicking and with absolutely no way of calming him down,” said Stephanie in a telephone interview. “They could be started by something small. For example, he liked Kit Kat candy bars. If he opened one and found a broken piece, he might go into an instant meltdown lasting ten minutes to two hours.”
Kenny had meltdowns in public places and in his early years went through stages in which he kissed strangers, licked people’s hands while pretending to be a dog, and said inappropriate things in public.
Said Stephanie, “The best way to cope was to avoid going out in public because it was incredibly embarrassing. I also didn’t want friends staying overnight and seeing my brother have a meltdown.”
What changed their situation was a good therapist. “Today, it would take a trained professional to figure out he had anything wrong with him,” said Stephanie. “He’s appropriate in social situations and understands sarcasm, which is rare for people with autism. He has friends and has made remarkable progress. Seeing where he is now at age 16 has given me faith in what a good therapist can do for a family.”
Currently, Stephanie is enrolled in a mental health counseling master’s degree program. Over the years, she learned to manage the resentment she often felt towards her brother by educating herself about autism in order to become more empathic and understanding. She attended therapy sessions and conferences on autism. Raising a child with autism requires a strong support system, she said.
“But the most important thing I learned was my brother would be nowhere near where he is today without my mother’s determination and her willingness to educate herself about autism,” she said. “But many other kids don’t have moms like that and they may not stand a chance.”