A Letter from Dr. Phillip C. DeMio, MD
We’re all scrambling at the micro & macro levels to do our part, & to deal with the ever-changing issues revolving around the Covid-19 virus world pandemic. As a general comment it’s EVERYWHERE, & it’s getting worse, with the potential to seriously threaten the health (& livelihood) of everyone at every age. Let’s focus on what it’s doing to people in the world of Autism & developmental disabilities (ASD).
Adults & kids with ASD, along with their families, care givers, educators, etc., are already vulnerable to a high risk of exposures & infections with any germ, plus our ASD persons generally can’t themselves implement social distancing*, and they will need one-on-one help with it from physically close-by persons. (*What an irony that we’ve forever monumentally pushed our ASD persons to INCREASE their social contact with others, but now we’re sending the polar OPPOSITE signals to them!). Given the fact that ASD also includes weak immune function, I fear that the risk of life threatening Covid is likely greater for them for any age. In the vernacular, it’ll be murderously difficult for our kids or adults to be under hospital admission, what with respiratory & contact isolation, masks, etc., plus may I say the lack of standard training or even awareness of the many medical problems in ASD makes for an even greater nightmare. Special dietary needs alone simply overwhelm caregivers at hospitals.
The current pool of trained persons who daily supervise our ASD persons was, pre-Covid, at best spread thin, short in number, & stricken with already deficient financial support, so now we’re hit with the bad combination of indefinite shutdowns of many such care givers, plus closings of special needs brick & motor facilities. For many of our ASD persons, this has cut off the life blood that they need to keep them grounded (ie, stable & emotionally pain-free), not to mention (but I am) the ever increasing and already stressed financial state for the families, now suddenly forced to take on all-day hands-on care while missing work & the paycheck-to-paycheck life that had kept things going on a pre-Covid shoestring. For families of neurotypical kids & adults, the school & work closings, plus the rationing of food & hygiene items is a tremendous unbelievable hardship, & it requires support at all levels, public & private. To raise that by a factor of 10 for persons in the ASD world, with dietary, bowel, menstrual, & other special health & nutrition needs…is an underestimate, which needs commensurate even higher support for people with ASD & their supervisors & families. So the store shelf with the last-one box of the only-cracker-he-ever-eats (gluten-free), the 4-pack-a-day adult pull-ups for the pubertal girl, or rolls & rolls of toilet paper for the kid with abnormal (and I mean abnormal) bowels are daily essentials, not hoarding. Though we’re used to the dirty looks, it’s a little harder to take during these trying times. Those day programs (now closed, no end in sight) had engaged our ASD kids & adults, giving them a full day’s routine leading to a better evening & help with sleep (so often a problem that plagues our kids & adults).
I must say this pandemic will probably go on for the better part of 5 or more months, & who will be there if & when we return to (a new) normal? So whether infected or not, Covid-19 is hitting everyone hard, with children, seniors, businesses, & those of us with physical & cognitive disabilities being highly vulnerable. We need to brace ourselves & all stick together to make it through this.