EPISODE 8 – Dr. Marc Ellison

BG Hamrick
Hi, everybody, BG Hamrick. Welcome to the Local Impact Podcast. With me today Whitney Barnhart back with me to talk about some great and fun things here today and some important issues. Also on the podcast today, our very special guest for this episode is Marc Ellison. Marc is the Executive Director for West Virginia Autism Training Center at Marshall University. And we’re just glad to have you with us, Marc, thank you for being on the podcast.

Dr. Marc Ellison
Thanks a lot. I appreciate being invited.

BG Hamrick
You bet. Let’s start with introducing everyone to you let them know a little bit about your history, maybe how you came to Marshall. As we’re reaching out to the tri state area here. Obviously, everyone’s familiar with Marshall University. How’s your connection? And what’s your history there?

Dr. Marc Ellison
Well, I was the first person in my family to even think about going to college and Marshall, from where I lived in Summersville, West Virginia, where I grew up in Nicholas County, West Virginia, seemed, seemed like a huge city seemed like New York City when I first first arrived on campus. But I came in the early 80s. And just fell in love, I fell in love with the university, fell in love with Huntington fell in love this part of the state and the people. So I ended up sticking around for for three degrees. Got a bachelor’s and master’s degree in counseling and a doctorate in education and, never left. I think from 1983 until now, I’ve probably been off campus, maybe a year and a half, two years total. The rest the time I’ve done something on campus somewhere. They can’t kick me off. They can’t take me away.

BG Hamrick
Well, that’s great. That’s good. We’re glad you landed here because what we’re going to talk about today is something very important. I’ll turn it over to Whitney for a few minutes to talk about maybe how she reached out to you what prompted her because she made this whole connection for us today. I’m just sort of the guy who gets on here and welcomes everyone and then asks a few questions. But I really want to get her direction and thoughts about this because it was something that she wanted us to talk about today.

Dr. Marc Ellison
Sure.

Whitney Barnhart
Yeah, again, Doc – Do we call you Dr. Marc? Dr. Ellison, Marc, what do you prefer?

Dr. Marc Ellison
Marc

Whitney Barnhart
Okay. Well, thank you so much for being here. Again, we really appreciate you taking the time to talk to us. I was on Facebook, and I was scrolling through some events. And last month was Autism Awareness Month in April. So there are a lot of autism events happening fundraisers and things like that. But among the autism – what’s the wordI’m looking – for programs, I guess that I saw, I saw your name stuck out to me because it was the West Virginia Autism Training Center at Marshall University. And I was wondering what exactly a training center did and how you differ from other sorts of autism programs?

Dr. Marc Ellison
Well, we’ve been evolving since the 80s. So sometimes, we’re not always exactly sure what we’re doing. We’re trying to keep up with the times most the time or be innovative in what we’re doing. So the Autism Training Center was established in the early 80s by a woman named Ruth Sullivan. And if you spend five minutes researching autism history, Ruth Sullivan is going to pop up in anything you research, she was a real pioneer, who, who really helped community based training develop not only West Virginia, but internationally, in the late 80s, early 90s. I worked for I worked for Dr. Sullivan, and another capacity for almost 20 years. She was a real mentor to me. But she founded the Autism Training Center. It’s a legislative entity, one of the things that she really wanted to do was make sure that it was embedded and had some real foundation. So she worked to get legislation passed in the in the 80s that created this statewide Autism Training Center. Initially in the very beginning It was designed to be on campus and folks would come from all over the state all 55 counties where they would come on campus live for a couple of weeks, learn how to best support their children. And then after a couple of weeks go back to their homes. And that wasn’t a very functional way to do things. Think about even though it was pre internet and, and pre cellphone. It was still really cumbersome for people to you know, come from Martinsburg to Huntington for two weeks in this work. So in the early 90s, we developed the idea that we would go out instead of having people come here. So we have people strategically located throughout the entire state of West Virginia. And we do work in all 55 counties. We have a couple of satellite offices one in Parkersburg and one in Fairmont. And, we provide, I guess, we do three different things. The first thing which has been around since the 80s, is what used to be called family focused, positive support. It’s a multi tiered system of support. So if you would call in and say that your four year old son or daughter was diagnosed with autism, we would talk to you about what kind of support you would need, and then you would fall into one of our three tiers, the first one might be some basic education that we would help with. The second might be some coaching and tutoring. And the third is more intensive behavioral supports. And, our focus that makes us different from other providers is that we’re coaching and teaching you and teachers and other people in the community of that child, how to best support that person. So we go in and build a team around the individual stay for maybe as long as 10 months, helping that team build and stay solid, and then we move back and away from that. That program has been around for 30 plus years, and we’ve supported more than 4000 people in the state. And we’ve done training for about 6000 educators, so we do a significant amount of work. The second thing, that second program that that I’ve mentioned is in 2002, we were the first university and our university through our Autism Training Center, developed a college support program for students with autism. Back in 2002, we called it the College Program for Students with Asperger’s Disorder. But Asperger’s Disorder as a term no longer exists. So we use Autism Spectrum as well. And we started in 2002, with one student, just one and supported him for an entire year. And he taught us a great deal about how to support folks like him. And today we support as many as 60 students every semester, who were getting traditional typical degrees, and go into work. We just had graduation at the university, we have students who were engineering majors, or math majors who were educators and all kinds of different disciplines who are going to go out and get jobs already have jobs lined up. What we did was support them, not only academically and perhaps, perhaps less academically, and more socially and through independent living, training. And then thirdly, in the last, the last six or seven years, we we’ve entered into a relationship with the Department of Education where we go into schools, and we build leadership teams around this concept called positive behavior support. And the whole purpose of that is to improve school climate and culture. That’s a non-autism-specific program. But if you can improve quality and climate, the quality of climate and culture in all schools for all kids, that includes kids with autism, so we were happy to do that, and then that includes early childhood, and all other kinds of levels of public education. And in seven years, we’ve worked in about 400 schools. So we’re doing a lot of work all across the state.

BG Hamrick
It occurred to me Whitney, that, you know, autism, as you mentioned in April was Autism Awareness Month. And we had talked, we’ve talked to a couple of guests about autism. But Marc, I don’t think we’ve ever in either one of those podcasts actually broke it down very, very deep to talk about what autism is. I mean, there may be people who are less familiar with that. And when you miss mentioned Asperger’s, and I was thinking, you know, there’s there’s been a lot of misconception over the years about autism and the spectrum or the range of that disease and, what people have, you know, as they struggle through that, could you help our audience understand a little bit about autism and about how it should be viewed and our correct response to that community?

Dr. Marc Ellison
Sure. Well, you probably heard as you’re talking about this concept called a spectrum, that the spectrum is broad, or the spectrum is deep or this whatever. And I think that a lot of people though, mistakenly think of the spectrum as a left to right kind of linear thing where folks who were really challenged might be here and folks who are really independent might be here. And I think that’s a mistake. In fact, I know that’s not how that term was intended. You really should look at how are the characteristics or the symptoms if you want to call them of autism, how are they presented by the individual. So it’s more of a prism than anything else, right? So, for instance, every single person with autism has challenges with social communication, and social interaction, and some type of behavioral challenge. Those are the three categories that every person with autism, regardless of how independent or challenged you may be, have. But if, for instance, you’re wanting to talk about communication, the challenge might be severe in that, in that the person may be nonverbal and not talk at all. Or it might be that the person is highly articulate and talks too much, and doesn’t understand the pragmatics of language. So he may monologue or she may or may or may not understand that I should pause and let you ask a question here in just a moment, right? So, so both are communication challenges, but how they present is what the spectrum is really all about. So. So if you boil autism down, it is it is about social communication and social interaction, and behavior in general.

BG Hamrick
Good, that helps. And I know that there’s been misconception, and that’s my concern is that the things are misconstrued misunderstood. And I want to make sure that people understand that, you know, this is not a, there are many people who, you know, have maybe dealt with being on the spectrum of some sort for autism, and either really didn’t know it, or certainly the people around them wouldn’t wouldn’t know it, because they’re very high functioning or very, you know, they’re they’re not as challenged as some others are. So that’s sort of, that’s the answer I was looking for Marc. And I appreciate that I wanted to make sure people understood that we’re dealing with it’s a broad range of types of people with different types of challenges.

Dr. Marc Ellison
For sure. And this problem is much more common than then most people realize. When I started in this field in 1985. It was it was the prevalence was estimated to be between 4 and 5 of every 10,000 people. And that was that was how it was recorded. That’s about one in 2,000. But today, it’s 1 in 54. And we have much more solid research about that there’s a there’s a multi state Center for Disease Control study that every two years lets us know what the prevalence is. West Virginia was in that initial study, and the first couple of years and then we dropped out. But but 1 in 54 is is the current amount and current prevalence. And I suspect that within a couple years, it’ll be even higher. West Virginia is no is no different. Our there’s no hard, hard and fast numbers in West Virginia. But because of our involvement with CDC and other kinds of research, we’re certain we’re right on the right on the national prevalence.

BG Hamrick
Cool. Appreciate that, that feedback for sure. I’ll give it back to Whitney and see if she has some other follow up questions.

Whitney Barnhart
It helps when you unmute the mic to participate in the conversation. I was just saying that it’s just it makes me happy to think that all those people now are getting the kind of attention and help and information that they need. Because 1 in 54 verses 1 in 2,000 doesn’t mean that like now there’s, you know that many more people with autism, it’s just that we recognize that now. And they can get the kind of tools and help that they need. And that’s really cool.

BG Hamrick
Yeah, it’s fascinating to me to watch in. When I started again, in the 80s. The only place that you got services, if you were diagnosed with autism was at a state institution. And West Virginia had about 13 of those and regional places around the state. So part of my job as a young kid, and it’s scary that they let me help do this. But I would go to those places and try to bring people back and develop community based programs. Now today, we call them Independent Living Homes, or we call them Group Homes. We didn’t call them any of that stuff back then we didn’t know the language for that. But But seriously, the the psychology at the time was that if you had if you had a child who was five and diagnosed with autism in 1975, the treatment was for your child to be institutionalized and for you to get psychological therapy on how to be a better parent. And because the idea of what caused autism was something called a refrigerator mother. And the refrigerator mother was the idea that parents especially mothers are cold and distant to their child emotionally distant to their children, which causes their children to become autistic and kind of withdraw within. And you know that there were a couple of generations where that was the prevalent psychological thought about what caused it. And can you imagine the damage that that’s done to parents and children then, I mean, for, for children who were, who were hospitalized their entire lives, you know, they missed out so much. One of the homes I supervised in the 90s in very late 80s, brought a an elderly man in his late 80s, out of one of the state institutions where he had been since the age of five. He grew up, I grew up in Spencer State Hospital, and came out and he was in his early 80s. And one of the first things we did was we realized how much he missed in his life. I mean, I kept thinking he missed them, he missed watching us go to the moon, he may have never been to the beach, you know, he’s been house like this forever. So one of the first things we did that summer was was put together a program to help him go to one of the one of the beaches in South Carolina. So he got to see the ocean for the first round. And, and it was a, it was a wonderful thing, but you can’t get over the tragedy of that. I mean, that’s, that’s tragic.

Whitney Barnhart
That is. Things that people don’t understand. Oftentimes, it’s easier to just put it away and not look at it than it is to dig deeper and try to figure it out.

Dr. Marc Ellison
Well, and that’s, and that’s one of the reasons I’m so happy about where we are now. And we’re No, we’re nowhere near where we need to be in terms of awareness and acceptance. In fact, there’s a debate about whether Autism Awareness Month should be called Autism Acceptance Month, and quit, you know, quit asking for awareness and be more demanding of acceptance. And, and I understand that, but I also have a long history of the kinds of things I just described, where I recognize that we’re making a lot of progress. And it can’t happen fast enough, but we’re making progress.

BG Hamrick
Very thankful for that, too. And I can imagine you’ve seen that progress in your history working and, and in that community. But what are we still missing Marc today? What is it that the community is still not connecting with that, that they need to where where can we bring more awareness in certain areas or certain topics? Or what where are we still falling down as a community?

Well, in a more existential sense, I think that that understanding the humanity and the potential of people with autism is what we’re really missing, because we’re still stuck with these stereotypes of, of people who are incredibly challenged. You hear the word autism, immediately, sometimes people my age at least and I think younger people think of behavior challenges, or, or he’s going to require, support his entire life. And that’s, that’s a 20-25 year old notion. That’s not necessarily the case now. And, and so I think that everything, that’s everything that we’re missing right now, society is really driven by that stigma that, that Well, there’s not a lot of hope out there. Right. And, and, and that, but then more tangibly, we’re missing, we’re missing resources, we’re missing early detection. The best research says that, that, that you can, you can diagnose children, some in sometimes under under two years of age, or even younger. And, and I think nationally, kids with autism are, are being diagnosed, if you’re white, somewhere after soon after four. If you’re African American, or, or child color, probably closer to six years of age. So there’s some real discrepancies there that has to be figured out and resolved. So early detection is important. And, and then and then once the diagnosis comes, the answer to what do you do is missing because, you know, I want somebody to help me, I want somebody to tell me what resources are there. I want somebody to tell me what the best evidence is. That’s what we try to do at our Autism Training Center. For example, one of the things that we that we developed a couple years ago, our parent cohorts all around the state, we we do it virtually, we do them in person, but we will put 10 parents together who have who have children who were just recently diagnosed and our entire, our entire purpose is to help them find resources, help them find a community that understands them and understands their needs. So So I think there’s there’s a missing piece there. That and also funding for things like ABA therapy is an important thing right now. Most most research tells you to that Applied Behavior Analysis, especially an ABA program called Discrete Trial Instruction has been beneficial for, for children with autism. But, and we have those burdens in West Virginia, but they’re long wait lists. And because there are a lot of, there’s not a lot of money and not a lot of reimbursement for those programs. So stereotype, I think if, if we, if we got rid of this idea that if we if we understood that there really is potential, and we can get in early and help build that potential, we need fewer services for the person later on in life. If we truly bought into that, as a society, those resources would be there.

Whitney Barnhart
So basically, what we’re wondering is how can we as a community, our podcast is all about showcasing people in organizations that are really making a difference in the tri state area, and people that are just doing really good work. And we want to know how we can be a part of that and how we can help and how, what our listeners can do to get you the funds in the volunteers and the kinds of things that you need.

BG Hamrick
Well, I appreciate that. And we do need, we do need some things. You know, our center is, is funded in part by a state allocation. But it doesn’t cover, for instance, the this the students support in our college program, it covers that statewide program that it doesn’t cover the services that we do for students on campus. Those are paid through private fees, and it doesn’t cover some other things. So what we do is we partner with a couple of local autism groups, the Autism Society of River Cities, which is a parent group in Huntington, Kentucky, the southern Kentucky and Eastern or southern Ohio, and, and the autism Services Center, which is a behavioral health center in this area. And we hold a really large fundraiser at Ritter Park, and every April, the end of April, it’s a walk, it’s a rally, it’s a bike marathon. One of the ways that people can can help us too, is to participate in those every year. It helps bring awareness and builds a nice community, those things might I think we’ve we’ve, we’ve drawn as many as three or 4,000 people in

Whitney Barnhart
Wow!

Dr. Marc Ellison
the Saturdays. But So the cool thing is that it’s a, it feels like a family reunion, even if you’ve got 2500 people there, we we all know each other, which is nice. So come be part of that, which is cool. We’ve not been able to do that in the pandemic. We didn’t have anything last year. But what we decided to do this year, we came down to try to do a virtual walk, or some other event and we just didn’t know how to do virtual walk, it was just kind of beyond our our capabilities. So what we did is we honored Elaine Harvey, who has been a staunch advocate and somebody who’s been who’s well known nationally, across the across the country for advocacy. And she’s also the parent of an adult, my age diagnosed with autism, she’s raised more than a million dollars worth for individuals and agencies around the state that we got together and did a virtual honoring of her last week. And what we asked people to do was, was instead of what donate what you might have done it done the rally. So if you’ve went to the rally and and you register for $25, donate 25 bucks to the honoring of Elaine Harvey in her name. And we stream that live, we have a recording of that on our West Virginia Autism Training Center Facebook and other places and be happy to send it to you guys if you’d like. And, and we’re just we’re gonna keep the link live for for a month or so and still collect some funds for that. One of the cool things would be folks could do was was click that link, it’s really really easy to donate electronically, and, and help fund us that way. And I want to say for for our centers, every dollar goes to supporting individuals with autism or families and or their families there, those those dollars don’t go into into salaries or maintenance or anything like that they they go towards directly to supporting individuals with autism.

Whitney Barnhart
That’s awesome. Wow. So we’ll definitely take some of those links and stuff and make sure we share it with our people as well so that we can get more eyes on what you guys are doing and how you guys are helping the community because it’s really important work that you’re doing.

Dr. Marc Ellison
Thank you.

BG Hamrick
Absolutely Marc, how can people get a hold of you and reach you if they want more information or need to connect with you for the resources you provide or for helping you provide those resources?

Dr. Marc Ellison
If you have a question just about what we’re doing or how to be involved, the easiest thing to do is is email me at at Ellison13@Marshall.edu, that’s E-L-L-I-S-O-N-1-3@marshall.edu. If you have a child or a family member that you’d like to talk about services, you can call us at 304-696-2332 asked to speak with Kelly, and she does all of our intake. And she’ll walk you through what services we provide and help you along that tier system to to get some supports. You know, in the, in the old days of our center, we were kind of known as the waitlist agency, we we had a lot of people on a long waitlist. And that’s no longer the case, we call now there’s about 23/24 day period before we can actually do some support. So there’s, we can move a lot faster than we used to.

BG Hamrick
That’s good news. Good to hear. Marc, thank you again for your time today. And we will definitely take all that information you mentioned including that support length that you mentioned, we’ll get that in the show notes, as Whitney mentioned. And we’ll, we’ll put all that up for our our viewers, our listeners to find and hopefully we’ll be able to rally some support for you and bring again more awareness and more acceptance to the community that

you support and love so dearly.

Bless you for all you do. Thank you for being on the podcast today. Whitney, as always, it’s a pleasure to be with you on the podcast

Whitney Barnhart
Pleasure to be here.

BG Hamrick
Marc will you stay in touch with us and when you keep us up to date on things that are happening so we can continue to support you and share with our community what’s happening?

Dr. Marc Ellison
Absolutely. I really appreciate the invitation and your interest and welcome to the to the family.

BG Hamrick
Yeah, absolutely. Likewise,

welcome to the Local Impact family as well. Folks, thank you for for listening, and we’ll see you next time on the Local Impact Podcast.