To many of us, the prolonged disruption to our routine was somewhat appreciated. Backyard improvements and walks close to home sufficed for a nice break from the structure of day to day life. However, for someone living with autism or other cognitive disabilities, a change in routine can cause serious stress for them and their families.
Ascendigo is a non-profit based in Carbondale that provides support to people with autism. They offer a plethora of services to members and families who truly depend on its programs. In regard to their clients, according to Ascendigo’s Chief Operating Officer Dan Richardson, “COVID-19 has rocked their world.”
To him, the biggest takeaway is, “How important routine, schedule and consistency is to individuals with autism.”
Ascendigo has three subsidiary programs: “Life Enrichment” caters to adults and supports them in their homes, at work and recreationally, “Outreach” works with children and their families on a case by case basis to enhance behavioral and developmental growth, and lastly the “Adventures” program offers various outdoor activities for both adults and children.
The summer portion of the Adventures program will be the hardest hit. Typically, nearly 200 people participate throughout the summer but this year Richardson expects to see in the area of 30 participants.
Members get to take part in rock climbing, rafting, horseback riding and much more. “For our clients those types of activities and the way we support our participants through those activities help them make breakthroughs in their life,” Richardson says.
The summer camps are generally broken down into several one week sessions. Members attend as many sessions as they like and have the option of staying overnight in the dormitories at Colorado Mountain College Spring Valley Campus. The overnight camp benefits families by providing 24/7 care for the participants while they’re there. This respite period is significant as many caregivers of people with autism rarely get time to themselves.
The Outreach program had to suspend operations right away at the onset of the shutdown. Richardson and his team immediately began “ramping up” their telehealth (virtual health visits) model in order to continue providing lessons to child participants and their parents.
“It really wasn’t until late April or early May when that was a reality,” Richardson says. In-person sessions have resumed as of the end of May.
Many of the adults in the Life Enrichment program rely heavily on Ascendigo’s staff around the clock, so it could not simply be shut down, even temporarily. Typically adult clients are very active, either going to work or using town facilities such as the pool and the recreation center regularly. “As soon as businesses started closing down and the stay at home order came that meant a change in our adult clients’ schedules,” says Richardson, “and for individuals with autism modifying a schedule can be a significant impact.”
People with autism, “Often rely on others to help cope and relate” says Richardson, “And when you have the nature of social distancing that’s going to be more challenging.”
Again, “A fundamental point,” according to Richardson, “Is that the inconsistencies and chaos of COVID-19 has really rocked their world and more so than it has for a neuro-typical person.”
A mother’s perspective
To Frances Lewis, it takes a community to raise any child — especially a child living with autism or other developmental disorders. Lewis can speak to both from experience. Along with her husband, she is raising twin nine year olds and their 12-year-old sister, Harper Morris.
Morris is living with autism and Prader-Willi syndrome, a genetic disorder. Typically her busy schedule is spread between home, school, recreating with friends, horseback riding and more. All of a sudden, it was just home and it was challenging to get Morris to understand why that was and that it was hopefully only temporary.
“Cognitively helping her to understand the situation is very challenging” says Lewis, “she goes in and out of thinking ‘this is the way life is going to be forever’ and is very distraught about that.” Morris copes by going into rages and her OCD is exacerbated. “When she gets upset or angry her outbursts last a longtime, like hours,” explains Lewis.
Lewis has had no breaks. Their usual respite provider who would take Morris on outings had to temporarily suspend her role due to the state health orders. “It kind of went from help to absolutely nothing, really — zero, zip,” Lewis states.
Homeschooling was difficult to keep up with, but Morris would still attend her virtual Zoom classes with her classmates from Carbondale Middle School. Even that caused her stress though. “If someone didn’t show up for Zoom time she thought they were dead,” says Lewis who had to explain to Morris that “Just because they weren’t here that didn’t mean that they aren’t here on Earth — they are.”
Morris did get the chance to see her teachers toward the end of the school year but it wasn’t the same. Everyone was wearing masks and social distancing the best they could. Yet again Morris was faced with a strange new reality and “was really confused about how to read the situation,” says Lewis.
To Lewis, “The main thing with Harper is being isolated and not having the support systems in place that help us manage her behaviors.” Not only does the family rely on the school system for many services but also other local agencies like Ascendigo and Smiling Goat Ranch for their behavioral health and therapeutic programs.
“When the schedules change that’s very hard for her to work through,” Lewis explains, “So we are grateful that things are starting to open back up again.”