Hello Beautiful People! Hoping this weekend was good to you; normally, today would be a motivational blog to set off the week; unfortunately, it has been very difficult to remain motivated when there is a feeling of helplessness against an adversary that cannot be touched or appealed to; this adversary I speak of- the impact of this pandemic on my autistic son.
First, AUTISM does not define my son; however, it has impacted his quality of life in terms of education, creating relationships and for some (as in the case of my son) cultivating independence. Autism is a developmental disorder characterized by impairments in social interaction and communication, often accompanied by stereotypical or repetitive behaviors; for my son, he has the additional challenge of stress-induced anxiety.
Most individuals with autism lead highly structured lives; my son (like clockwork) gets up at a certain time, listens to his podcast, makes his morning coffee, showers, gets dressed, organizes his room then leaves for his 8-6 pm job (in that order). Once the workday is over, he heads home and gets into his afternoon ritual which mirrors his morning. Weekends are filled with meeting his friends at their favorite hangout spot, going to a movie on Saturday, and Sunday and finally capping his weekend with either a movie from one of his DVDs or watching the WWE Network. For as long as I can remember, my son has never deviated from the structure that is his life routine until now; sadly it is a deviation forced on him by this pandemic; having been laid off from a job that he so loves has set off a domino effect in his daily functioning. He is anxious, finds himself dealing with auditory hallucinations, and becoming easily agitated largely because it is very difficult for him to grasp the concept of a city being on "pause" or understanding what "social distancing" is and why it's being done by some and not by others.
As his mother, this is gut-wrenching; I feel helpless as I watch my son undergo this change that he has no control over; I was asked by someone: " you are a mental health professional, this is what you do for a living, why can't you do something for him?" that question and the individual who posted it, pissed me off; there is a very clear dynamic at play here; my son is not my client, he is my child and though I may know what is happening to him, that does not mean I have the power to swoop in and take away his suffering; I have to be vulnerable, ask for help and support him, as any parent would.
This pandemic has introduced us to a world where plans are rarely worth the paper they're written on. This level of unpredictability can be terrifying for autistic people who count on a routine to bring structure to the otherwise uncertain world. There is a commonly held belief that autistic people are apathetic, but in reality, they have a tendency to over-empathize. This means that when they find themselves locked in with loved ones - who are now following different patterns to those they expect - they are distressed by the situation of the outer world. But in addition, they are deeply impacted by absorbing parents' fears, siblings' stress, and the calls for more urgency and information from every show we watch, or website we land on. This is such a challenge; When my son hears about a new topic, his tightly linked mind will try yo consume everything about the subject until he has no gaps to fill and therefore no chances of it taking him by surprise; yet when it comes to this pandemic, no one knows everything and so he is left desperately hunting for answers, which then induces stress and kicks up his anxiety-the fear of the unknown is my son's kryptonite.
I can't speak for every parent with an autistic child, but generally, autistic people are obsessed with clarity: my son needs everything to be very simple and very clear and thrives on being very rules-based. It can be quite stressful for him to think he might be breaking a rule, and to see other people breaking the rules while trying to grasp the concept of social distancing.
Another big issue is uncertainty, which is difficult for autistic people at the best of times. We have never been in a situation that's been so uncertain, so that's very tough, It's also worth noting that often autistic people enjoy being employed as a staple of their independence, and are proud earning a salary. The idea of having no money and not being able to navigate the very complex system of getting support is a challenge. My son knows he has my support financially and it does not sit well with him; he believes that by his unemployment, it puts a burden on me despite my telling him otherwise; again gut-wrenching.
Coming to the realization that my son is in need of mental health treatment was not an easy one. He understands treatment as a necessity to help address his stress; I am fortunate; I have ease in accessing services due largely in part to having a network of mental health clinicians and family members in the medical field. Sadly, there are families who share the same experience and find it difficult to acquire services for their children, especially if they are of adult age. I do not know what the next few days, weeks, or months will hold for my son; there is no predictability for us; we have no choice but to live day by day. What I am certain of is being steadfast and consistent in my support of him; to continue to love him unconditionally, understanding that there will be continued bad days and days of just "ok." This is not only his challenge, but it is also our challenge; we will get through this together.
For my parents who share the same struggle, please do not hesitate to reach out to the organizations I have listed below for support and resources:
"Staying positive does not mean that things will turn out okay. Rather it is knowing that YOU will be okay no matter how things will turn out."