Supporting the Neurodiversity Community
(Autism and FASD)
I worked with people with intellectual impairments for about 17 years at programs, in group homes, and as a respite worker. Many of the people I worked with could not speak and had self-injurious behaviours, often called SIB. SIB is something people do that is not premeditated but causes harm, like hitting their heads so hard that they caused injuries, had to be hospitalized because of infections caused by biting themselves and other behaviours that can be quite dangerous. In 2020, when the COVID-19 global pandemic started, I became really worried about what the unintended consequences would be for families with special needs kids. How would they cope with physical distancing, cancelled supports, and increased care costs? What would happen if the pandemic went on for a year or longer, which based on infectious disease work I had done before, we knew was likely.
It was at this point that I became involved with the Self-Injurious Behaviours think tank out of the University of British Columbia, Autism Canada, the Ontario Autism Coalition, Eastern Doors Centre in New Brunswick, CanFASD Research Network, Autism Services of Saskatoon, Northern Ontario the Pacifica Autism Families Network, and other people/organizations involved in caring for people with diverse needs.
We have started to do some initial research. The issues facing families span far beyond the impacts of COVID-19, and will continue to get worse without better supports. Hopefully we can find a way to provide for those who are marginalized and silenced within our society.