(Editor's note: Please welcome Nancy Hokkanen as Age of Autism's newest Contributing Editor. An astute observer and wonderful writer, she lives in Minnesota with her husband and their much-loved 14-year-old son. For ten years she has volunteered for several autism advocacy groups, co-moderates a biomedical treatment listserv, and was recently appointed to the Canary Party executive board.)
By Nancy Hokkanen
Ten years ago my son received the diagnosis of autism. At age four his future was uncertain, so for years I felt that I needed to be his voice. But nowadays I ask his permission regarding what I write or say about him publicly. Here, for example.
To my great relief, my son can now speak and write for himself. Unlike so many other kids on the autism spectrum, my son is verbal. Sometimes too verbal, invective-wise. He’s taken a novel-writing class. Hey, he can use “de facto” in a sentence.
I say this not to boast, but to share hope with others wondering what their child might achieve some day. My son’s expressive language skills developed in part from biomedical treatments, speech therapy, educational TV, and hour-long phone conversations with peers about video games. And let’s not forget YouTube!
As Hokkanen the Younger grows physically, academically and psychologically, so too grows his desire for independence. Like others his age he wants to make his own choices – a laudable goal. But what if he doesn’t realize that those choices could hurt him? I’ve spent 14 years protecting my son from falls and choking and bugs and bad weather. I’ve also sheltered him from people who don’t understand autism, and from those who use the issue for selfish purposes.
The truth is, I can’t protect my son forever. Sometimes we autism parents must decide to let our kids learn from their own mistakes… but of course, only to a point. Obviously someone who’s more mentally challenged or has oppositional defiant disorder will need very firm guidance for safety protection. Parents’ knowledge of their children’s individual affects and limits is a static and priceless commodity.
Recently I consciously decided to let my son get his first uncomfortable sunburn. Before he left home to go swimming with a friend’s family, his father and I had wanted to apply sunscreen to his pale Nordic skin, like always. He refused. We ordered him to let us apply sunscreen. He refused. A ritual of parental caring had just become a personal civil rights issue.
I considered our options:
My son argued his case. “I just want to have the experience so I’ve learned my lesson and I won’t do it again,” he told me. “I understand that some experiences are ones that I can’t do again. Like jumping off a cliff.”
Telling the lad he couldn’t go swimming seemed an overreaction, so I analyzed the conditions and variables involved in swimming without sunscreen. The TV weather report said the day’s UV rating was low. Dad and I estimated the amount of time he’d actually be in the pool and decided that, even with water reflection, any potential sunburn to nose and shoulders would not be dangerous or particularly painful… just uncomfortable. My husband and I had grown up without benefit of sunscreen, had gotten sunburned many times and survived, but back in those prehistoric times Planet Earth had a thicker ozone layer.
So my son left the (over)protection of home, went swimming without sunscreen, and came home unblistered, just lightly pink… and feeling contented. For a few hours, anyway. At bedtime he put on a white v-necked T-shirt and showed me how his color had deepened into a new color I defined as “ouchy red”… the color of maternal guilt.
My first impulse was to slather my poor almost-six-foot-baby with burn cream, but hey, transdermal lidocaine overdose can be, well, fatal. To mask my alarm I jokingly called him “Lobster Boy.” That made him cranky. He did tolerate my application of aloe lotion but with the usual sensory defensiveness.
The experience inspired my budding Hemingway to wax philosophical about his epidermal choice. According to his writing instructor, people need to be set free to learn from their mistakes. Teachable moment, indeed – pour moi. Over the next several days my son’s rosy skin color lightened, but he admitted that some soreness had kicked in. This longstanding summer rite of passage concluded with the inevitable peeling and itching.
In hindsight I realized it was time to stop slathering him with sunscreen glop by hand and instead revisit aerosol spray– which he permitted the next time he went swimming, with no burn. Verbal child or not, parents are supposed to play medical detective and figure out these possible explanations for puzzling behaviors. We also need to critically assess treatments and medications such as chemical sunscreens that may create more problems than they solve.
Not-so-coincidentally that week a local TV station interviewed a mother whose two pale-skinned daughters got blistering sunburns at a school-run summer camp. The mother hadn’t realized that the aides were legally barred from applying sunscreen to kids. But for those aides to have yanked the kids out of the full sun after 15-30 minutes doesn’t require a legal dispensation – just common sense.
Nursing homes face similar care and consent issues as autism families in judging the ability of a resident to understand the implications of their actions, when sun-loving senior citizens lose track of their time spent outdoors. The caregiver/patient dialogue about judgment capacity and consent must be two-way and ongoing, and at times power struggles are inevitable.
As our children become teens and adults, autonomy issues become increasingly complex – whether it’s deciding about nutritional supplements or dental care, therapeutic exercises or surgical interventions. We will face questions regarding one’s ability to make the best choices for a healthful diet and exercise, or whether parents should ever use physically coercive methods to force compliance for what we consider “their own good.”
We autism families need to the proverbial village to help raise our children, but first that village must learn and respect the specific health needs of children on the autism spectrum. For families placing children outside the home, resistance may come from caregivers unwilling to question mainstream medical protocols or try emerging treatments.
Perhaps the most difficult lesson to teach the general public has been that health care choices for those with autism often involve not only out-of-the-box innovation, but also counterintuitive thinking. The vaccines that appear to help other people have damaged the brains, nervous systems and immune functions of many kids on the spectrum.
Families of higher-functioning young adults can teach their children to balance trust of non-family caregivers with a healthy dose of skepticism, using critical thinking skills to consider others’ motives and what they may stand to gain from interpersonal transactions.
Hard decisions, these, which sometimes end with hard lessons. But if parents and children can prioritize mutual education and respect in caregiving negotiations, at least neither side will feel burned by the process.