A Spectrum of Complications
Interview with an ASD Personal Support Worker
By Nik Jelicic, (Member, The Young Canadians Roundtable on Health)
Even on good, “normal” days, life with Autism Spectrum Disorder (ASD) can be a challenge. For youth with ASD, sudden or unplanned changes - be it a sudden change in the weather or having a different brand of juice box than their usual go-to for lunch - can lead to debilitating confusion, distress, irritation, and even trauma. For lower-functioning children, transitioning from performing one activity to another without proper priming, communication, and strategy can significantly undermine their day.
Within the span of mere weeks, COVID-19 took away outdoor activities, social engagement, and learning opportunities heavily relied upon by children with ASD and their families. In some lucky cases, virtual offerings replaced this programming, although their effectiveness likely cannot compete with the real deal. There is no doubt that the swift and widespread sociological transitions experienced by the entire planet have thrown a pandemic-sized wrench in the routine-based and often meticulously-planned daily lives of youth with ASD, whose wellbeing already lies in a delicate balance.
In the best cases, youth affected by ASD understand the bases of new COVID-related policies and respect the concept of a worldwide pandemic. They may transition from in-person to online schooling with some success, continue to develop social skills through interactions limited to family members only, and persevere through this unparalleled chapter of history. In other cases, youth may be unable to grasp the reasons for what may feel like a prolonged detention or punishment. These children may become increasingly irritated and aggressive with limited time outdoors, rendering a safety risk to themselves and others. Regardless, COVID-19 has placed a far more taxing burden on this population and their families than that placed on typically-developing youth.
As a consequence, with group services and respite programs being moved online or completely repealed, demands have increased for personal support workers (PSWs). These individuals, who are often required to “bubble” with their client and respective family rather than their own, care for youth with ASD on a one-on-one basis for days or weeks at a time. This allows family members to refocus attention to their work, tending to other children, and other responsibilities.
I interviewed Annie Douglas, an experienced ASD youth personal service worker, over the phone. We discussed some of her experiences working with youth and families during the COVID-19 pandemic:
For those who don’t know, what exactly are the responsibilities of a PSW for youth with ASD? What would a day on the job look like?
Generally, PSWs dedicate their time to providing hands-on direct care for anyone that might need it. As a PSW, your job can consist of a strict regimen of various healthcare and personal hygiene tasks to keep your client healthy and functioning. Or, it can really just be a supervisory or companionship role for clients who are relatively independent but require more assistance than what can be provided by public services or daycares. Since autism is such a diverse spectrum, no two PSW jobs for clients with ASD will look the same.
This summer, I worked with John [true name and identity retained to maintain confidentiality], a young man whose symptoms place him somewhere around the middle of the spectrum. He was relatively verbal, was very energetic, and I quickly found out he had a fascination for trains and buses. His parents wanted someone around to keep him calm and safe while completing his daily tasks since his excitement often led to loud yelling, running, and sometimes aggressive head-pumping. His parents were great and they gave him a checklist with daily chores to complete, so I’d try to fill any gaps with excursions or other engaging programming based on his attitudes that day and how much sleep he had the night before.
How would you describe your time as a personal care worker this summer relative to other experiences in such placements outside of a worldwide pandemic?
At first while restrictions were pretty intense, it was definitely an adjustment. John understood that it was unsafe to go out in public but would get really concerned and agitated when his mom would leave to go to her office downtown. It took him a bit of time every day to calm down after his mom left, and then things would be pretty normal. I couldn’t take him on any excursions around town and he was getting more aggressive the more we were cooped up at home. I tried some train-related crafts that took up some time.
Once restrictions were slightly lifted, about a month into working with him, we went to his favourite train station and we hung out there for a few hours making sure to obey distancing regulations and wear masks. His mood immediately lifted and from then on, we went outside every day which helped a lot. His weekly group social skills lessons have been cancelled, which was a big blow since they were really valuable, and he especially benefitted from the - albeit forced – social interactions with his peers
In terms of my bubbling, John and his family were my bubble, so when I wasn’t with them I was isolating for most of the summer, which was really tough. Last month things got a bit more relaxed so I could see my family and some close friends.
Like you mentioned, programs are getting cancelled. Do you think more families are looking for personal care workers this year than previously?
Definitely. I actually had four families that I knew previously reach out to me within a span of eight days this spring asking for me to be a PSW for their children after their different planned programming had been cancelled. Since it’s a full-time commitment, I only took on the first family that asked me. Families really rely on governmentally-funded programs for their children, and most, if not all, programs were halted in their tracks.
Things were looking kind of desperate for a bit right after COVID hit Canada. Since these families need more than just babysitters, not only did the cancellation or postponement of these programs prevent them from being able to work, but it also increased the cost of child care. From what I know, 3 of the 4 families ended up finding a PSW, while the father of the other child had to take an official leave from work since there was no one in their area able to provide the care they needed.
How would you suggest someone interested in getting involved with youth with ASD does so during this pandemic?
In Ontario, becoming a PSW requires a college certificate, so there’s less of short-term option. But if people are interested in caring for ASD clients specifically, many families and programs don’t require you to have a diploma. In fact, I got most of my experience caring for children with ASD without my PSW certificate. There are many ASD-specific certifications including Applied Behaviour Analysis (ABA) and Crisis Prevention Intervention (CPI) that are generally enough to get your foot in the door, along with some experience working with vulnerable populations.
Ms. Douglas ended the conversation noting that although PSWs are in demand now, resources for families impacted by ASD in Ontario had major gaps in both availability and accessibility long before the COVID-19 pandemic.
Nik is a senior at Dalhousie University, and will be completing his Hons.B.Sc in Kinesiology in 2021. He is involved in the Autism Canada community, having worked full time as a respite worker at the Geneva Center for Autism, and volunteering for numerous Special Olympics organizations. Nik aspires to be attend medical school in the future.