Beyond the Balance Sheet Podcast
Episode 2 | Real World Solutions: Organization for Autism Research
Overview
Episode 2 of FVCbank’s podcast “Beyond the Balance Sheet”, hosted by Vince Coglianese, WMAL On-Air Host, alongside Patricia Ferrick, President of FVCbank, features an interview with Kristen Essex, Executive Director of the Organization for Autism Research (OAR). OAR, founded in 2001 by parents and grandparents of autistic individuals, focuses on applied research and evidence-based resources to improve the daily lives of autistic people. Key programs include the Kit for Kids, which teaches K-8 students about autism to prevent bullying, and the Hire Autism initiative, which helps autistic adults find employment. OAR faces challenges in funding and community engagement but aims to expand its impact through revamped programs and new initiatives like a coffee shop concept to support autistic individuals in employment.
Prefer reading over listening? You can read the full transcript of the episode below.
FVC Bank’s Beyond the Balance Sheet Podcast – Episode 2 – OAR
Vince Coglianese (0:02): Hi. Welcome to Beyond the Balance Sheet, an FVCbank podcast where we shine a light on the people and the organizations who are turning compassion into action. I’m Vince Coglianese, alongside my co-host, Patricia Ferrick. She’s the FVCbank president, and we call her Trish. Hello, Trish.
Patricia Ferrick (0:19): Hi Vince, good to see you. Today, we’re honored to speak with an FVCbank customer and a remarkable organization that is transforming lives through research, education and practical support for individuals with autism and their families.
Vince Coglianese (0:33): Yeah, the Organization for Autism Research better known as OAR, stands out for its commitment to applied research, real world solutions and community empowerment, from military families to educators, employers to students, OAR is making evidence based support more accessible for everyone.
Patricia Ferrick (0:51): We’re joined by Kristen Essex, Executive Director for OAR, who will share the inspiring story behind the organization, the programs making a difference and how each of us can help build a more inclusive future.
Kristen Essex (1:04): Thank you so much for having me today. I’m very excited to join you on this podcast.
Founding and Mission of OAR
Vince Coglianese (1:09): Well, let’s dive in. Great to have you here. So what inspired the founding of OAR?
Kristen Essex (1:15): So OAR was founded in 2001 by parents and grandparents of autistic individuals. Their inspiration was their common vision, to use science to answer the daily questions and challenges faced by autistic individuals, their families, caregivers and educators. Our mission, then and now, is to apply research to the challenges of autism.
Patricia Ferrick (1:34): So what gaps were they trying to fill in autism research or advocacy?
Kristen Essex (1:39): They were really trying to answer questions faced by people in their daily lives, every day. How can we improve the lives of people today and really focus on research that answered those questions.
Vince Coglianese (1:52): Alright, when it comes to OAR’s place in the world of people trying to address autism, what sets OAR apart from those other organizations?
Kristen Essex (2:00): So it’s a great question. There are a ton of autism organizations out there, however, OAR is singular focus is on applied research and evidence, evidence based resources truly sets us apart. Everything we focus on seeks to have meaning in the day to day lives of autistic people. We aren’t funding research that looks for a cure or a cause we’re, we fund studies that have everyday relevance, such as education, transportation, communication, the list really does go on.
Involvement of Families, Educators, and Autistic Individuals
Patricia Ferrick (2:29): Can you explain how or involves families, educators and people with autism in shaping your research or resources?
Kristen Essex (2:35): Definitely, as I mentioned, OAR was founded by parents and grandparents of autistic children, so we’ve had families involved from the beginning. All of our all of our resources, engage the Autistic community. We do needs based analysis on what we can, what gaps we can look to fill in the community. Our Board of Directors and our Scientific Council, which approves and reviews all of our funded research studies have autistic representation, and we’ve also recently created a Self-Advocate Advisory Council, which seeks to meaningfully engage the Autistic community in our resources and programs as we expand in the future.
Signature Programs of OAR
Vince Coglianese (3:15): Okay, let’s get into some of those programs, then. Can you tell us some of OAR’s signature programs, the ones you’re proud of, I’m sure you’re proud of all of but you could share a few examples of the research projects or educational resources that you have.
Kristen Essex (3:28): Yeah. I mean, honestly, we have so many available on our website that I could go on for ages about this. But two of our biggest programs are our Kit for Kids Program, which is our peer education program. The Kit for Kids program seeks to teach kids in the K through eighth grades about their autistic classmates. So this is done through a booklet called What’s up with Nick that teaches about Nick and his autism and why he may have some differences. But at the end of the day, you know, they’re all children, and they all just get along. Studies have shown that an early focus on communication, understanding and social emotional skill building can really help prevent bullying. And that’s, you know, the key behind this program and to prevent bullying of autistic children. One of the great things about the story is, you know, we get some feedback here and there from these grants that we provide. And we had a parent share recently that their child was invited to their very first play date after this program was used in their classroom. And so we love hearing stories like that, because it really shows the efficacy of these.
Vince Coglianese (4:31): That’s great, and can kids understand that at an early age?
Kristen Essex (4:33): So that’s that’s the point of the program. It really is trying to teach this in at a level that they do get. The program involves friendship tip sheets to teach them how to be better friends. It has a classroom poster that really goes through, you know, what they’re learning and what they’re doing. Some of the things, the feedback we’ve gotten is, you know, kids will learn about it, and they’ll start using different language in the classroom immediately, talking about what they discussed and about autism and understanding of. Oh, that’s okay. He has an aide, or she’s just a little different, but it’s, it’s fine. They just, you know, they just need a little more support.
Vince Coglianese (5:06): Sure, yeah, that’s amazing.
Impact and Expansion of OAR Programs
Patricia Ferrick 5:08 How many schools are utilizing the program?
Kristen Essex (5:11): So that is a good question, and one I probably don’t have data on. We do have a peer education program, grant program that aligns with this program, where we award probably 30 to 50 grants a year for schools and local community groups who use the program. We are, we have recently engaged with some school districts in New Jersey last year, and then we have another one, I believe it was California this year, where we worked with school districts to use it across their school districts as well.
Patricia Ferrick (5:42): Can you share a story or two about a family, student or school positively impacted by yours work?
Kristen Essex (5:47): So one of our favorite stories is one of our earliest research studies focused on executive functioning for autistic individuals, and it created an executive functioning curriculum that eventually became known as unstuck and on target. So the, the real goal of OAR is research studies, is their pilot studies, where researchers can then go and get larger funding. So this research grant did that got larger funding through NIH, created this executive functioning curriculum that has been rolled out in many school districts across the country and crew, including locally at Fairfax County Public Schools in Virginia. We had a long time or supporter and former employee who her son went through Fairfax County Public Schools and used this program and had great things to say about how it really helped him learn to self regulate, and, you know, helped change the behavior, and it’s just such a great example of applied research and the difference it really can make.
Vince Coglianese (6:46): I’m sorry, but just as a basic matter, can you explain executive functioning to me? What does that mean?
Kristen Essex (6:51): So executive functioning is essentially your ability to do the things. So you know, you’re laying out, you have a task list that you need to go get done, and your executive functioning is your ability functioning is your ability to go get those things done. And a lot of times, kids with autism have an inability to do that and to accomplish those tasks. And so it’s it’s tools and scaffolding to help them better manage their emotions, better manage those tasks and get those things done.
Autism and Hiring Initiatives
Vince Coglianese (7:20): Alright, Kristen, here’s a question for you about autism and hiring. Are there employers who actively seek autistic individuals for jobs?
Kristen Essex (7:29): In our experience, yes, there are. I mean, we now, through our hire autism program, have employer partners in 50 states, so obviously there are employers out there who are actively seeking autistic individuals, whether it’s, you know, part of their diversity initiatives, or they just want an employee, an employee who, you know, some research will will tell you that, you know, these employees are reliable and they like routine. So a lot of times, autistic individuals will come in and, you know, like some of these jobs that are very routine, that being said, there’s a quote in the autism community, if you’ve met one autistic individual person, you’ve met one autistic person. So everybody is very different. So that is, you know, kind of a mindset that people have, but it doesn’t necessarily apply to every autistic person. They can do tons of different jobs, but yeah, there are definitely employers out there who are actively seeking autistic individuals, and we’ve had some great success with the higher autism program. We have people who have been holding jobs for a while, from tech industry to we partner with a farm in northern Virginia to local driving range, things like that. So people have a wide range of interests and wide range of part of employers looking to hire them,
Vince Coglianese (8:42): and a great resource to connect.
Kristen Essex (8:43): Yeah, definitely
Challenges and Support in Autism Research
Vince Coglianese (8:44): Got it. Okay, so when it comes to conducting this kinds of research, and what are the challenges that you face in autism research and the support that you need in order to do it?
Kristen Essex (8:54): So the big thing facing the autism research community, and honestly, the research community as a whole right now, is funding. We’ve heard stories from a lot of our previous researchers who are now in other middle of other research studies, who have gotten funding pulled and finding ways to continue their research. Right now, we’re looking to find ways to better support the research community and find additional funding and increase our funding of studies, but that’s the biggest thing right now. But you know, common topics in autism research are really community-based participation, so really representing autistic individuals in those research studies is key and vital to getting great results.
Patricia Ferrick (9:39): How can listeners or community partners get involved to help?
Kristen Essex (9:44): There’s so many ways. I mean, obviously, like any nonprofit, financial support is key. We can always use financial support. But one of the things that we’ve really been working with OAR, OAR has been known as the best kept secret secret in the autism world, which is great, except that when you’re a secret, you aren’t, your resources aren’t getting into the hands of people who need them.
Vince Coglianese (10:03): You don’t want to be a secret! Yeah, I get it. No, let’s not be a secret anymore.
Kristen Essex (10:06): So, what we’re really working on now is, is, you know better, engaging the community, having a presence. We’re holding a lot of a lot more local events, community and fundraising events. So just you know, come out, attend events, check out our resources on our website, share information about us, share resources, share the social media posts. That’s really what we’re looking to do right now, is just better engage with the community.
Future Initiatives and Goals of OAR
Vince Coglianese (10:29): Love that. Okay, so when what’s next for OAR? Do you have upcoming events, initiatives, goals that are on the horizon for you?
Kristen Essex (10:36): Yeah. So we do have some exciting things we’re working on in the immediate future, our Kit for Kids program that I mentioned. So some of the feedback we have received on that is that the reading level isn’t necessarily always great for K through eight, which you can imagine, your reading level changes. So within the next year to year to two years, we are revamping that program to separate it into four different reading levels to better accommodate ages. So that’s really exciting, because that is such a meaningful program. And then we also have another program called our Hire Autism Program, which helps autistic adults find meaningful employment. That’s a great place to volunteer if people are looking out to volunteer. We have professionals who work with autistic job seekers, seekers virtually to work on their job search process and do resume, interview, prep, everything. So that’s a great thing, but in that program, within the next five years, we’re looking, we’re in the very early stages of looking into doing a coffee shop, or a similar concept, to really expand our employment opportunities and help training and get people in the autistic, autistic and visual job market.
Vince Coglianese (11:41): What do you mean, what do you mean by a coffee shop?
Kristen Essex (11:43): Literally, a coffee shop or a cafe, or something like that. We’re in the very early stages. We want to open up locally.
Vince Coglianese (11:49): Open up a small business.
Kristen Essex (11:50): Yup, we want to open up a small business here, likely in Northern Virginia, DC area. We’ll test it out here. Ideally, the long term goal would be something that could be replicable by other organizations in other parts of the country with seed grants or something like that. But that’s, that’s long term. Right now, we’re in the very early stages of, you know, doing that own coffee shop here locally. And then we’ll um…
Vince Coglianese (12:10): Sounds like a neat idea. I like it.
Kristen Essex (12:12): yeah, so you know that’s, there’s some local businesses already that hire autistic individuals, and so we want to help support that community a little bit more.
Patricia Ferrick (12:21): What an inspiring conversation. The work OAR is doing, bridging research and real life application is exactly the kind of impact we need more of,
Vince Coglianese (12:30): yeah, whether it’s helping a student succeed or preparing a job seeker for meaningful employment, or giving families the tools to navigate any sort of thing in daily life, or is definitely showing what’s possible, and research meets empathy.
Patricia Ferrick (12:43): If you’d like to learn more, get involved or donate. Visit researchautism.org. Your support helps expand these vital programs and bring even more hope to families across the country.
Vince Coglianese (12:55): Thanks for listening to Beyond the Balance Sheet. If you enjoyed today’s episode, please subscribe, leave a review and share it with someone who needs to hear it. Until next time, take care.
Check out Beyond The Balance Sheet Episode 1
