Guest Author - Tara O´Gorman, MSW
Last summer, I met with a friend I had not seen in years. She manages professional speakers and has been representing a speaker who is well known in the autism community. While she has been connected to the speaker for years, she admitted her understanding of autism was fairly limited. We began discuss my observations, professionally and as a parent. I am experienced in explaining the facts and figures of autism. I can talk about the signs and symptoms, treatments and research, and the importance of support for families living with autism spectrum disorders (ASD).
Discussing my personal journey is less black-and-white, of course, and eventually the easy conversation turned into an emotional summary of, at the time, nearly 13 years. My friend did not just want to know the 'easy' stuff. She is just as capable of using a search engine as anyone. She asked deep, personal questions about living with someone on the autism spectrum. My son, and my family, have been in a really good place. Long before diagnosis, and long after, that could not be said. We dealt with pain, loss, regret, anxiety, fear, and frustration, just as any parents with a child with ASD experiences. I learned to lean on our autism community and friends who truly understand what it is like to walk in my shoes. I do my best to educate those who do not. I strive for understanding and acceptance and for everyone with ASD to feel embraced and empowered.
Yet, despite all the positive, there is always a lingering, nagging voice in my head somewhere. What about setbacks? What if something happens at school today? What happens if someone misunderstands his intentions and is hostile, and he reacts negatively? Will he be able to handle high school? College? Will his anxieties cause him to act out in ways that permanently derail his ambitions? Will he ever find someone to marry, to accept and embrace his quirks and see the amazing person I know? Will he have friends, a good job, children, peace, and a community who sees his Asperger's traits as pieces of a whole human who deserves the same opportunities and love as anyone else? What is he doing right now? Is he safe? Is he happy? Does he know to come to me when he has a problem?
My friend then used a word I had never attached to my feelings... hypervigilance. She went on to explain that she can understand how I, no matter how positively I am feeling at that time, always have a heightened sense of caution and anxiety. Wow. Not only did she GET IT, but she wrapped my feelings into a word I had never considered. Hypervigilance. Yes. A feeling of always being on guard, of always waiting for something bad to happen because, well, experience has shown that to be the case far too many times. At that moment, I had two opposing feelings. I felt validated, as though my hidden fears made complete sense, even to someone who could not truly understand what it was like to live my life. I also felt like I had been kicked in the gut. The word itself feels so negative. To be hypervigilant means to be watchful, but to the extent of being overly sensitive to threats and to the point of constant anxiety. Well... yeah.
Since that conversation, I have reflected many times on this word, hypervigilance. I have used the word in discussions with other parents. I frequently try to incorporate it into discussions of parenting a child with ASD, or for any child with special needs. I am not sure I have completely come to accept that it is a healthy way of living, although it is a realistic expression of my daily life. When my anxiety and fear creep in, I try to think of how hypervigilance can become a catalyst for action rather than an adversary to defeat. If necessity is the motherhood of invention, maybe hypervigilance is the mother of advocacy? Time (and patience) will tell.