For parents of the growing number of children with autism, “overwhelming” is the most common word used to describe caregiving. But that’s about all that is common across the autism spectrum. Jennifer Berzok, of Bethesda, Md., whose 9-year-old son, Ben, received an autism diagnosis at age 2 1/2, was told by a doctor, “When you meet one kid with autism, you meet one kid with autism.” Unlike cancer or other diseases that have a prescribed treatment backed by science, caregivers for kids with autism face a bewildering menu of expensive therapies that may or may not be effective for their child’s issues. Autism spectrum disorder may have some common behaviors – difficulty with social interactions and language deficits – but there’s no one-size-fits-all standard of care.
“Given that autistic children often have sleep disorders, parents are exhausted,” said Julie Fisher, executive director of the New York Center for Autism Charter School (NYCA) in East Harlem. But, she said, the “culture of the ‘super parent’ makes it hard for them to ask for help.”
Shaniqua Gregg said she feels lucky to have “won the lottery” that allows her son Joshua, 14, to attend NYCA. But it’s still difficult at home. “Each year becomes harder because his hormones are raging, he’s unable to express himself and he’s 5-8 and more aggressive,” she says. “We don’t have a lot of down time or a moment to regroup or get away from it.”
Gregg works in the admissions office of a skilled-nursing facility near her home. When she interviewed for the job, she explained that she and her husband were raising a teenager with autism and a toddler. “At first, my boss seemed to have compassion, but she says when she needs to adjust her schedule slightly to meet her son’s needs, “they make me feel as though I have to choose between caring for my child and taking care of my job.”
As exhausting as it is now, perhaps the hardest part of caregiving for a child with autism is the realization, as Berzok says, that “this might be forever. Ben might always be dependent.” . . .
Notice that in a story about caring for the disabled, autism is big part of the focus. That chilling phrase, “for parents of the growing number of children with autism,” is further conditioning that more kids have autism–that’s just the way it is. The writer doesn’t bother to explain it. We’re not reassured that it’s merely due to greater recognition. No one wonders why there isn’t a growing number adults with an autism diagnosis. (Better diagnosing isn’t something doctors who treat adults are doing, evidently.) And there’s no mention of the rate. “Heading toward a crisis.” Maybe when autistic young adults descend on social services big time in this country, AUTISM WILL FINALLY BE RECOGNIZED AS AN OFFICIAL CRISIS. We’ll see.