Alison Singer is co-founder and president of the Autism Science Foundation, which promotes awareness of autism-spectrum disorders and funds research on their cause and treatment. The foundation awards grants to researchers at universities around the globe, convenes events where scientists share their findings with the public, and holds an annual conference to inform special-education teachers on cutting-edge research in the field. The mission is personal for Singer, whose 55-year-old brother and 22-year-old daughter both have autism.
Singer spoke with the Chronicle about how her organization and the scientists and families it serves have adjusted to remote work, distance learning, and the disruption of critical services for people with autism.
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One of the key underlying issues with autism is resistance to change. Our kids insist on sameness, and now you’ve completely disrupted their routine. They’re not going to school. They’re not doing things that they are used to doing, and this is how they remain calm.
These are kids who need therapeutic interventions. They’re used to working one-on-one with a special-education teacher who’s highly trained in behavioral techniques, and now they’re home with their mom. There are certain types of interventions for kids with autism that are just not possible through teletherapy, like physical therapy, occupational therapy. We’re talking to lots of speech therapists to see if we can help them switch to Zoom.
There’s no road map for this. We’re saying, “Let’s try these things and then let us know what works and we’ll create lists of best practices and share them back with you.” We’re doing a lot of surveying.
It’s all new territory, but basically the needs are huge, the needs are very different, and the resources are limited. It’s just a challenging time for everyone.
Communities are rallying to help people in need.
Every day, we update our list of resources for families. We always did a weekly podcast that translated the latest science and explained it for families. Now, that’s really become a Covid-19 tool. We’re using that to explain, for example, how should you prepare your child with autism for a telemedicine appointment? We do a daily blog post focused on Covid-19. We have blog posts from special-education teachers. We have blog posts from families describing their experiences. We have blog posts from behavior analysts giving tips to families on how to manage their children’s difficult behaviors at home.
We’re also spending a tremendous amount of time working one-on-one with families who are trying to find resources, who are trying to navigate distance learning for the first time, who are facing telemedicine for the first time, and whose children are not receiving their mandated services.
Our families are worried about kids running out of the house. They’re worried about self-injury. Even though it’s challenging for everyone to pivot to online learning, it’s almost impossible for our families.
I worry as much for the parents’ mental health as I do for their kids’. We encourage them to try to find a little time for themselves every day, even if it’s just to take a shower. We’re encouraging families to find activities that are appropriate, like taking walks together.
I talked to a single mom this morning who said that she can’t go to the grocery store because her son doesn’t understand the rules of social distancing. He runs around and he goes near other people and other people freak out. She’s like, “What am I going to do for food? I can’t get delivery.” We’re encouraging people: Ask your neighbors. The one thing that’s good that’s coming out of this crisis is that communities are really rallying to help people in need.
My daughter’s in residential placement. She has very profound autism and intellectual disability, so she has no idea what’s going on. She just knows that my husband and I haven’t visited her. I normally visit her every weekend, but she’s in lockdown right now so I haven’t been able to visit her for four weekends. When we visit her, we take her to Walmart, she does some shopping, and then we take her to the diner, and she orders lunch. We can’t do that. And every time we try to FaceTime her, I think it just upsets her more, because she sees us and she says, “Walmart.” She wants to go to Walmart. She doesn’t understand what “pandemic” means. She just knows I’m not there. It’s totally heartbreaking.
Focus on what you can do.
Universities have basically shuttered, and so the pace of research has slowed considerably. Some research is still going on: genetics-based research and database queries and survey-based research. But the vast majority of the research that we had focused on prior to Covid-19 has stopped. We’re hosting webinars for scientists to help them work through research interruption.
We’re still making payments on grants that we awarded prior to January 31, but we’re holding off right now on making new grants until we have a better handle on our cash position and until we’re able to start to raise money again.
We reached out to our grantees and said, “Let us help you see how you can change your project to do it using Zoom or doing different types of work.” Projects that would have required interviews with families in a clinic, we’re working to change those so that the interviews can be done on Zoom. We’re also looking at how we can support studies of telehealth while we have this natural experiment going on. We’re doing a lot of surveys of families: What’s working for you, what’s not working for you, what do you wish you were able to receive? And then we’re trying to give that feedback to the providers. We’re doing a lot of data collection and sharing of best-practice information with regard to service delivery.
In some areas, we’re just saying, “We’ll wait until you’re ready, and then the funding will be there.”
We’re also working to create online forums for our scientists so that they can continue to present research findings to families. We used to do that in person.
We’re trying to just be very positive. I keep telling my staff, I keep telling the board: Let’s not focus on what we can’t do; let’s focus on what we can do.
Your laptop is always there.
We’re all working from home. Of course, we miss seeing each other. I have one staff member who has a six-month-old baby. I have another staff member who has a one-and-a-half-year-old. I have one staff member who has twins, one of whom has autism. She’s continuing to work more than full time, while also making sure that both of her children are participating in home school and that the one with autism is not harming herself or putting herself in danger. There’s a lot of added stress on our staff. Everyone is facing challenges.
We’re trying to be very flexible with regard to when people are doing their work. My staff is amazing, they’re incredibly committed to the cause. Sometimes we see the babies on our Zoom calls, which I actually like!
We serve families, and so I think we’re all pretty good at making sure that we’re focused on our family as well. But it’s tough.
Our work is different, but our work is still ongoing. My staff’s incredibly busy. They’re working incredibly hard. I don’t understand all these people who are posting online about how much free time they have and they’re watching Netflix and they’re learning how to cook and they’re reading novels. How are you doing that? I’m working way more than ever, and my whole staff is, too!
One thing about working from home is that your laptop is always there; the office is always open. You have to sort of say, “OK, I’m done for the day.” I’m trying not to work around the clock. You have to decompress. I watched a little bit of Real Housewives of New York last night. It’s my guilty pleasure. I don’t always get to, but I’m trying to go for a run every day. I’m trying to walk outside. I’ve been doing some calls while walking. I think I’ve definitely noticed more spring flowers this year than I have in the past.
Our staff is a constituency.
I think it’s important to be very transparent about the financial health of the organization with staff. I’ve been very candid with them about our cash position. I’ve been candid about how we’re going to make decisions about what we’re going to spend on and what we’re going to hold off on and where we’re going to change direction, where we’re going to stay the course.
Our fundraising events are canceled. One we moved to September. We paid up front. We refunded people’s ticket prices, and we hope they’ll be back in September.
We don’t have a monopoly on suffering in the autism community. People right now who are facing Covid-19 are suffering tremendously.
It just feels wrong right now to ask for money for autism research, even though the need is tremendous. We’re trying to serve our community the way we’ve always served our community. And hopefully, when things calm down, donors will recognize that, and they’ll come back.
I have an MBA, and I’ve always approached our nonprofit as a business. My board is like this, too. We’re very conservative with our spending. We’re spending now what we raised in 2019, as opposed to anticipated 2020 revenue. That puts us in a little bit of a better financial situation than some other organizations. We have several months’ worth of payroll, so we’ll be able to, hopefully, make it through.
I’m communicating a lot more with the board than usual. I’m sending emails to the board — probably three or four a week, at least. We’re applying for the payroll-protection program. The board had to talk about that. They’re all very supportive. A lot of them have children with autism, and so they’re living it.
I am so grateful for how dedicated my team is and for how they have stepped up and adjusted their schedules to make sure that all of this new work is getting done. No one’s complaining. Everyone is working 150 percent. And in return, I’m doing everything I can to make sure that everyone who’s currently on the payroll stays on the payroll. We have to think about our employees and our staff as a constituency, and we have to serve our staff as well as serving our families and serving our scientists.
