- Mary Bailey
Re-Defining the Word “Cure” In the Age of Autism
When my son, Chase, was diagnosed with autism nearly 12 years ago at the age of 2, I was bombarded with more theories about cures, causes, and conspiracies than I could digest.
One therapy group was telling me that it was the mercury in fish that did this to Chase, and that I should take him in to have the mercury removed from his blood. Another group was telling me it was the vaccines. While yet another was telling me that the government was out to destroy the black community by infecting young black baby boys when their parents weren’t looking. To this day, whenever I see an article entitled, “I’ve Found the Cure to…” my knee-jerk reaction is to shake my head and roll my eyes. If I decide to bother reading the article, it’s so I can be generally informed on what theories are currently circulating out there, or to be mildly amused. Keeping up with the hype and theories, and trying to distinguish the viable from the ridiculous, became disheartening and was far more disturbing for me than the diagnosis itself. For the sake of survival and my sanity, I retreated into my own world - a world where I was determined to find the “cure” that would correct Chase’s circumstances.
When the majority of us hear the word “cure”, we are automatically wired to think of some magical pill or surgical procedure that eliminates a problem or cures a disease, completely and forever. Why wouldn’t we think this? Webster’s Dictionary’s first definition of the word states, “Something (such as a drug or medical treatment) that stops a disease and makes someone healthy again.” Another definition, just reiterates the first, “The act of making someone healthy again after an illness.” I’m not at all suggesting that those definitions or train of thought are wrong. But these are not the only ways to define or think about the word cure.
A means of correcting or relieving anything that is troublesome or detrimental.”
Through my journey with autism, I found another definition that helped me change the way I view the word cure - “A means of correcting or relieving anything that is troublesome or detrimental.” When it came to the subject of my son’s diagnosis of autism, the words “correcting and relieving” spoke to me more than “drug and medical treatment”; as did the words “troublesome or detrimental”, rather than “disease and illness”. On a grander scale, this definition brought to my mind that there is some correcting and relieving of certain views about autism, that are detrimental and troublesome to the autism community. And personally, this definition also spoke to the need for me to cure my own thought processes and pre-conceived ideas about parenting. It challenged me to re-train myself, and learn strategies and acquire skills that would resonate with the way Chase is designed, and how he perceives and interacts with the world. Health, safety, and happiness are what we parents and other caregivers want for our loved ones. So armed with my new understanding of cure, I began the process of helping Chase make adjustments that would ensure greater health, safety, and happiness in his own life.
One of Chase’s autistic symptoms that needed to be adjusted is his compulsion to stim (the repetition of physical movements, sounds, or repetitive movement of objects). Chase stims by picking up small objects and then letting them fall through his fingers, over and over again. He does this when he is creating, problem-solving, or needing to relax. I wrote about the roll stimming has played in Chase’s life in greater detail in a previous post. You can read it here. For my purposes here, I will simply say that prior to helping Chase manage this symptom, his stimming could sometimes be detrimental and troublesome for him. A perfect example of this is when, as a small child, he would sit in the sand on the beach, pick up handfuls of sand and then watch it fall through his fingers. That may sound harmless at first – except sand would be blowing in his and other peoples’ eyes, which is physically painful and socially inconsiderate – though he never intended to cause pain or be unkind. Stimming caused him to detach and drift into his own world, making him unaware of his surroundings – which is dangerous, because it could result in accidents, or make him a target for those with foul intentions. It was clear to me that stimming was a fixture in Chase’s life, but I needed to remove the detrimental factor. First, I needed to limit his stimming to one, simple, multi-piece object that was appropriate for stimming. His grandfather got him some plastic gold coins, which worked perfectly. The second thing I had to do was get him to limit his stimming to a private space. This took several conversations and role-playing sessions about social perceptions and being aware of his surroundings; but he eventually got it.
Speech issues and social anxiety go hand-in-hand, and are a troublesome pair for those afflicted with the challenges and for those within their social circle alike.
Chase also experienced speech delay, which is another common symptom of autism. Being able to communicate effectively with the world around him was foundational to his emotional, psychological, and social wellbeing, as well as a significant safety issue. Once it was determined that he was physically capable of speech, it became paramount that he receive the proper therapy to cultivate that skill. It took time, the expertise of professional therapists, and endless practice. But again, he got it and it’s something that he continues to perfect on a daily basis. Speech issues and social anxiety go hand-in-hand, and are a troublesome pair for those afflicted with the challenges and for those within their social circle alike. As Chase’s speech skills were developing so were his social skills, with the added assistance of behavioral training, which has resulted in relief.
Taking acting lessons and doing his cooking show are also providing him with speech and other types of therapy (or “cures”), while he is engaging in activities that he is passionate about. However, if someone had told me 7 years ago that Chase would be doing a cooking show, loving it, and that it would be contributing significantly to his personalized therapy, I would have laughed them to shame. As I’ve discussed in other blog posts, Chase had extreme early childhood food aversions, which is yet another common symptom of autism. He was hyper-sensitive to smells, textures, appearances, and tastes. This was a particularly distressing burden for me, as his severely limited diet affected his overall health. There’s no magic pill or medical procedure to cure this problem, and every trick in the book had failed. But just when I was at my wits-end, Fate stepped in, and Chase discovered his own cure in the form of network cooking and food shows. It’s safe to say that he became obsessed with them. He is almost 100% a visual learner, and he had found a way to first see and study the world of food from a safe distance, before branching out to touch and taste new foods. Before I knew what was happening, he was telling me that he wanted to try frog’s legs and fried alligator! The rest, as they say, is history. There are still a few things he’s not too keen on, for one reason or another - like eggs or hot dogs. But the food adventurer he is today, is a far cry from the boy who would literally only eat 5 foods.
Chase’s issue with fine motor skills is another symptom of autism that has no magic pill or medical procedure to cure it. Ironically, cooking relies heavily on fine motor skills. So in order for him to perform tasks in the kitchen, we have discovered tools and utensils that accommodate his deficits and make things like cutting more comfortable for him.
These are just a few of the challenges and corresponding “cures” that I’ve experienced with Chase. Autism is an extremely broad and complicated spectrum. It can’t be emphasized enough that there’s not a one-size-fits-all answer to handling the numerous and varied challenges and combinations that occur within the spectrum. Each person has his/her own unique set of circumstances, and each person’s cure is just as unique.
To truly help those with autism, it is necessary to view and know the individuals as whole persons - to take into account the specific needs, symptoms, triggers, apparent aptitudes; and possible interests, gifts, goals, and dreams of the individuals, in order to develop strategies for correcting or relieving anything that is troublesome or detrimental to their overall health, safety, happiness, peace-of-mind, and fulfillment. Some indeed require medication and / or medical assistance as part of their journeys toward the most personally fulfilling lives possible for themselves; others do not. Some require specialized diets, or lots of physical activity; some gravitate toward highly stimulating environments, while others seek stillness; and the variables go on and on. Bottom line, whatever the cases may be, parents and other caregivers in the lives of those with autism, must be vigilant, committed to, and focused on the ones whom we are supporting – observation and intuition are guideposts; thinking-outside-the-box is mandatory; patience, perseverance, and resourcefulness are non-negotiables; humility and wisdom ground us; and supportive relationships energize and encourage us. Personally, this is the only formula I know of which ensures the best possible chance of our loved ones with autism living happy, fulfilling lives.