The topic of Autism Spectrum Disorder hits the news more frequently these days. Perhaps it is because the incidence of diagnosis has increased, up from 1 in every 68 children to 1 in every 59, an increase of 15% in 2 years according to the Centers for Disease Control and Prevention.
My familiarity with autism is partly professional, having worked in mental heath, but it is largely personal. My grandson was diagnosed at the age of three. He started receiving occupational and speech therapies immediately. By the time he entered school, he was an above average student, but experienced some sensory and social differences. He was intolerant of loud noise and had difficulty relating to children his age.
As he aged, the social differences became more problematic and he was bullied at school. Adults loved him because of his impeccable manners, but 10-year-old boys did not share that appreciation. His parents worked diligently to find a more welcoming environment.
Fortunately, for the past three years he has attended a school where he feels safe. He is now 15, bright and with a huge intellectual curiosity. He still has few friends, but he is blessed with a very large network of family and friends who love and support him.
What does the future hold in store for him? He would like to develop video games.
I’m sure there are challenges ahead, but also successes, as in every life.
Autism Specrrum Disorder is complicated and sometimes difficult to diagnose. A champion in helping us understand is Temple Grandin, professor of animal science at Colorado State University, who is herself on the spectrum.
Grandin encourages us to avoid stereotypes, as in: If you have met one person on the spectrum, you’ve met one person on the spectrum. The spectrum is very broad, but there are some commonalities: differences or problems with personality, social behavior or interaction with others and communication. The gender gap in diagnosis is narrowing, although girls may show more atypical symptoms. There is also increased awareness and diagnosis among minorities.
Persons on the spectrum often experience an increased sensitivity to external stimuli, or conversely, a lack of it, repetitive actions or inflexibility, a propensity for self injury or an exceptional interest in a special topic. For instance, I once knew a little boy with a huge fascination with penguins. He could name and describe every type and identify their location on a map.
Most individuals are diagnosed around the age of three or four. Early intervention with occupational and speech therapies are invaluable.
Parents are the "real stars" of this journey. They will find that they are required to be lifelong advocates for their child. They need to advocate for a multitude of services that will benefit their child. It can be mentally and physically exhausting. Care must be afforded to the caretaker. One mother states the she "puts on her big girl panties every morning and holds them up with duct tape."
Many families find sustenance from support groups who "get it."
One parent described the experience as living in a different country with different culture and social mores.
I asked two mothers once how they would define "success" for their children on the spectrum. One stated success will be "when he is happy and content with his independent level of success, not societal definitions." Another says, "We celebrate successes every day. Some may be small, like tasting a new food or following a one- or two-step direction or a spontaneous word.” One thing is clear. It’s a difficult journey, but there is love and joy to be found along the way.