For those affected by autism, it truly is the best and the worst of times.
As a mom who's only recently dipped her feet into the deep, often murky waters of this disorder, I am learning to laugh through my tears. With an estimated 1 in 88 children being diagnosed with an autism spectrum disorders (ASD), there is more awareness than ever. We are opening our eyes, digging our heads out the sand. And it's a wonderful, long overdue thing.
For now there is still help at hand—a glut of workshops, books, and blogs—albeit a parent has to jump through several hoops, and wait many moons, to get at it. Yet I, and many others like me, rue the day when we will be left to fend for ourselves. And that day may be coming sooner than any of us would like to think.
Next year, the American Psychiatric Association plans to restrict the parameters of what's classed as an ASD. It's estimated that the next version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will result in 75 percent fewer diagnosed cases of Asperger's or pervasive disorders, and as many as 25 percent fewer cases of what's referred to as classic autism.
Call me a cynic. Such a cull doesn't mean that there will be fewer autistic kids milling around in 2013, but simply that governments will have stumbled upon a convenient means to cut funding for the therapies on which those touched by autism so depend.
My preschooler has recently been diagnosed with Asperger's. Though essentially on the 'high functioning' end of the autism spectrum, he nonetheless faces very real, daily challenges. Yes, we are lucky that he is verbal. Yes, I appreciate that there are others worse off than him. That's not to say we as a family don't desperately need help. With early intervention, my son and other Aspies have a fighting chance of learning the tools they will need to cope, even thrive, in a neuro-typical world.
That's why the proposed changes to the DSM terrify and sadden me. If we don't pay now, by providing autistic children (regardless of their level of disability) the assistance they need, they will most certainly pay later.
It takes a special kind of person to care for those at their most vulnerable. That kind of person isn’t me, but it’s my mother. A registered nurse for 25 years, she worked on virtually every ward, caring for virtually every kind of patient. In the years leading up to her retirement, she was based on post-surgical and palliative units.
Whatever troubles she had at the start of each shift she left at the hospital door. Seeing the sick and dying on a daily basis has a habit of shrinking your problems down to size, she would say. Occasionally her job brought a smile to her lips. Like the time she told the bully who’d tormented her throughout high school to 'roll over' for an injection.
Growing up with a nurse for a mother could be incredibly annoying. Not only did she and her white Hush Puppies-wearing brigade reserve the goriest shop talk for mealtimes, my mom was quick to dole out a humbling reality check any time I felt sorry for myself. Her pep talks consisted of telling me about some girl my age either riddled with cancer or confined to a wheelchair. That never failed to shut me up.
Over the years I came to regard her as compassionate to a fault. She washed grown men as if they were babies. She stayed up all night then slept the next morning. She tried her damnedest to make the dying comfortable. Needless to say, nursing isn’t for the faint-hearted. Caring for the terminally ill is especially challenging. To cope, my mother erected an emotional wall. Sometimes she had to leave the room for a moment and literally pinch herself to regain composure.
Even when she was upset or sick or angry, she forgot about herself the minute she donned her uniform. As a mother in my own right, I am used to putting my son’s needs before mine: feeding him first when my own stomach is growling. Caring for him around the clock when he’s unwell, driving him to the hospital in the middle of the night. That’s what is expected of mothers. He’s flesh and blood, after all. Even still, it’s not always easy to give so much of myself.
But my mother and nurses like her, who care for total strangers, are in a different league. Quite frankly, I’m not sure how she did it most days. Shift work not only wreaks havoc on your body’s metabolism, it also saps personal relationships. And the pressure is near constant. Making split-second, ethical judgment calls isn’t just the stuff of Gray’s and ER.
Like teaching, nursing is a vocation. It’s not for everyone. And not all nurses are created equal. Patients tend to have what Hemingway called 'built-in bullshit detectors.' Most can tell at once whether you like what you do, whether you genuinely care or are just going through the motions. Over the years my mother has treated more than ailing bodies. She has received praise from doctors, coworkers, patients, and families. Though she's not supposed to accept gifts, she has accumulated reams of Thank You cards, baked goods, even cash that the nurses pool together to buy things like toasters and kettles for the ward.
By far the most rewarding aspect of her job, though, has been seeing her patients recover and resume their lives. Like the man who lost his leg in a farming accident. By rights he shouldn’t have been able to walk again, yet he promised he’d one day walk into the ward and see her… Months later, thanks to a prosthesis and countless hours of rehab, he did just that.
My mother represents not just the best of the profession; she represents the best of humanity, and I'm in awe of her.
How does your mother inspire you? Spill it.