Recently, a SARRC clinical supervisor posted this picture to her Instagram. Of all the videos, images, and memes I’ve seen since we were first hit with COVID-19, this one is by far my favorite.
Many people with autism struggle immensely with even the smallest disruptions in their routines. Parents often learn the hard way to take the very same route to school each day, or that their child will eat only one brand of chicken nuggets, or that the 43 stuffed animals on their child’s bed must be put in the exact same place every day.
So a child with autism pointing out to us that, due to a pandemic, a sudden change in routines isn’t so easy is, well, the pot calling the kettle black I guess.
And the truth is…it’s not so easy. Over the span of a weekend in early March, SARRC was forced to shut down all of our group programs, affecting 125 children between our two inclusive preschools; 60 teens in our PEERS and CommunityWorks programs; 70 grandparents who regularly attend our monthly grandparents support group meetings; and the launch of our new Sibshops program for siblings of children with autism. We were heartbroken after watching many of our adults with autism, who competed for and were succeeding in their jobs, became victims of our slowed economy, and join our country’s rapidly rising unemployment rate. And our annual fundraising events like our Breakfast and Walk, which not only raise critical funds for the organization but also inspire and activate our supportive community, have been postponed, canceled, or transformed into virtual formats.
Yet all of this pales in comparison to what it would mean for our families if treatment for their children suddenly came to an abrupt stop.
Would a 2-year-old boy with autism, who receives 30 hours of treatment every single week and just started saying his first words, now being to `lose his speech? Would a teen with autism, who spent months improving her conversation skills and finally made a real friend at school, be able to maintain that friendship through a stay-at-home order? What would a recently hired adult with autism, whose new job provides a sense of worth and belonging, do if he was isolated at home because his employer was forced to close their business? How would parents handle the stress of balancing working from home, homeschooling siblings, and becoming their child’s only therapist? And what about the parents who are worried and looking for answers about their child’s development only to have their diagnostic appointments canceled, and the start of treatment further delayed?
For SARRC, there was only one option. We would have to adapt to a sudden change in routine and assure our families that SARRC is here for you.
For instance, SARRC quickly modified our programs to ensure treatment continues. Yes, we closed our inclusive preschools, but treatment is now delivered in each child’s home. To minimize the risk of exposure for our therapists and families, we schedule only one therapist to work with only one family, as opposed to several therapists going in and out of the homes of multiple families. Every therapy session starts by screening both the therapist and family for COVID symptoms. And all therapists have been provided with kits that include hand sanitizer and masks.
As an entrepreneurial nonprofit, we’ve invested in developing technology to extend our reach, and now these tools are helping us reach those who otherwise couldn’t receive support. We pivoted to telemedicine, allowing us to provide remote supervision for our therapists, coaching for our parents, and 1:1 therapy for our teens and adults with autism. Thanks to our NODA app, which allows for remote diagnostic evaluations, we’ve seen over 50 families seeking a diagnosis for their children. And last year, we began transitioning JumpStart, our flagship 5-week program for newly diagnosed families, to an online, e-learning format, making the program completely accessible during this pandemic.
Finally, our therapists uprooted their regular schedules overnight and became our essential healthcare heroes. They made the difficult shift from working with several clients to working with only one child, teen, or adult with autism every day of every week of every month. And they selflessly put themselves at risk as they rallied around SARRC’s mission with a relentless commitment to supporting our families and clients.
Like people with autism, this sudden change in routine hasn’t been easy for any of us, and we’ve all had to learn to adapt. As for SARRC, we’ve been able to do so because, for 23 years, this community has been here for us. You’ve supported us because we’ve demonstrated that good outcomes for children, teens, and adults with autism are possible. You’ve invested in our impact, allowing us to innovate what’s next for people with autism and their families. You’ve opened doors, giving Phoenix the well-deserved reputation as “the most autism-friendly city in the world.” And it is this community that will continue to stand by SARRC as an essential partner, and together, we’ll not only overcome this challenge but emerge stronger than ever.
With gratitude,
Daniel Openden, PhD, BCBA-D
SARRC President & CEO
SARRC's Team Is Here for You
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