Recently I read a blog by Mandy Farmer, a parent of a young boy with autism. In it, she takes issue with story upon story that merely describes autism as a blessing or a gift. That is, it gives us understanding, patience, and a positive attitude. Autistic individuals are super-smart with talents that boggle our minds. They’re full of love and acceptance.
“When Jimmy was a boy, I read about some family raising a disabled child and they would say it’s the best thing that ever happened to them; it made me want to throw up.”
–Pat Bucher
On the other hand is another extreme, the narrative that autism is anything but a gift. A diagnosis of autism leaves parents crying, grieving, and shocked. The child is a medical mystery, a problem to be cured, and a major disappointment. The parent or caregiver has no choice but to look ahead to a lifetime of social stigma, stress and financial challenges. Research seems to offer little help as well. For instance, one recent study concludes “autism moms have stress similar to combat soldiers.” Once reality sets in, marriage takes a hit and so does one’s quality of life. Everyone’s impacted negatively, including siblings and grandparents.
For Farmer, autism is neither a blessing nor a curse, it just is. She describes her loneliness and her son’s loneliness. Ms. Farmer talks about her struggle to get her son medical care as well as an education that meets his needs and to which he is entitled. She discusses how helpless she feels when her son is screaming all day long, or when she has to take her daughter to the hospital for a possible concussion as a consequence of her son’s impulsive behavior. Finally, Ms. Farmer concludes her blog with the words, “Please don’t tell me autism is a gift. My child is a gift, his autism is a disability.”
Extreme snippets of life fail to capture what autism is all about. They tend to sugarcoat or demonize. We now know that each individual and each family experience autism differently. That continues and changes throughout life. So blanket statements about autism in general are terribly inaccurate, stereotypical, and incomplete. In essence, they conjure up images that bear little resemblance to everyday life.
Please note: I am currently writing a book about my entire family and how we have grown over the years, in large part because of Jimmy. My son Jimmy is a middle-aged adult on the autism spectrum. The voices and perspectives of my son, my two daughters and wife as well as friends and professionals are included throughout. It’s a real, uplifting, and remarkable story; one which I have wanted to share for a long time. The book will be published later this summer.
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