I’ve always struggled with numbers but not this one…
From the CDC comes this statistic – 1 in 50 children under the age of 17 holds an autism diagnosis. Even for me, someone who has worked with parents of children with autism for years and suspected for quite some time that even the most recent statistic of 1 in 88 children was low, seeing this in print was simply startling.
Ask anyone whose life has been touched by autism and they’ll tell you that it changes everything. It strains marriages and finances. Overwhelms resources and time. Shifts priorities and plans. Every day, in every possible way, autism overtakes life and the expression …”let me count the ways” doesn’t even scratch the surface in terms of the impact an autism spectrum disorder has on parents, families and well beyond. Trust me, I know.
At a time when school budgets are being slashed and families are truly hurting by an aching economy, these numbers equate to a huge wake-up call for those who may have been napping. The need for early intervention services is critical as the earlier supports and services are secured, the greater likelihood that the child can make and sustain progress. The need for broader and more complex supports for teens has never been greater with social deficits and bullying defining a huge part of life for high school students. And the need for college-level support is enormous, as the expectations and freedom that accompany the foray into young adult independence brings with it enormous risks. Trust me, I know.
Working parents have the greatest challenges and if both parents are employed full-time outside of the home or if it’s a single parent household, all bets are off. Therapies, evaluations, research, school meetings, crisis situations…the strain on working parents and their time, finances, and health are beyond what employers and colleagues understand or even recognize. And as I say ad nauseum…behind every child with an autism spectrum disorder is a parent (or two parents) of a child with an autism spectrum disorder. Trust me, I know.
Autism is complex and multi-faceted, leaving even the most “on” parents buckling under the strain. Parents find themselves leaving jobs because any hope of work/life balance is greatly compromised if not impossible. Parents find themselves on Google at 3 a.m. or spending weekends sifting through books and journals. Parents find themselves remortgaging their homes, borrowing from family members, and altering their way of life beyond what those on the outside could fathom. Trust me, I know.
Autism is a crisis. Plain and simple. It was a crisis five years ago and is even moreso today. And while many are researching causes and developing new therapies, the reality is that exploding numbers of children and teens are struggling on this very day from wake-up in the morning to sleep (if sleep even happens) at night, in 2nd Grade and 11th Grade, in public schools and private schools. And standing behind and beside each of these children is a worn, overwhelmed, frustrated, and confused parent – or two parents – trying in herculean ways to find answers and make things better. Trust me, I know.
When a crisis hits, people mobilize. Only in this case, it isn’t a natural disaster but rather a national crisis impacting not only families in their own homes, but employers as well. Employers must offer assistance, whether through flexible work options, funds allocated for an employee to use for therapies, private school, or legal counsel, or employee resource groups so working parents can share information and offer support. Because even with internet research in the middle of the night, what working parent with an 8 or 14-year-old with Asperger’s Syndrome has the time or energy to shoulder more than they already are? Employers also need to recognize that today’s children with an autism spectrum disorder will likely be tomorrow’s employees programming their computer system or writing their corporate manual. And in terms of society, everyone needs to begin to understand autism differently, for many pre-conceived notions from years ago are as outdated as go-go boots and wall telephones.
One in 50 children has autism. It impacts everyone and is a genuine crisis. Trust me, I know.