Transcribed by Destiny Crawley
This is the VR workforce studio, inspiration, education and affirmation “AT WORK”. The workforce and disability employment podcast from the Wilson Workforce and Rehabilitation Center, a Division of the Virginia Department for Aging and Rehabilitative Services. The VR Workforce Studio is published by our Foundation at wwrcf.org and is available in iTunes and at vrworkforcestudio.com. You are listening to the vrworkforcestudio.
“Basically diving down into your own personal hell and then coming out of that hell with a smile on your face but with bumps and bruises in the process. You can walk away smiling and feeling proud of those bruises.”
Rick: On Todays Episode of the VR Workforce Studio; we are talking about autism.
Anne: We hear more and more about autism in the media, in schools, and in society in general. So on today’s show, we are talking with experts in autism.
Rick: And not just from the professional perspective but real experts. We’ll talk with a young man with autism who has been very successful getting out of the house, learning to drive,and landing his dream job in the IT field through Vocational Rehabilitation. His dad also joins us, he’s written a book called, “The Journey of Inches”, which chronicles the family’s journey and the lessons they’ve learned about autism.
Anne: Our host for the podcast is Rick Sizemore, who leads the Wilson Workforce and Rehabilitation Center.
Rick: Thank you, Anne. Uh, it’s great to be here today. Anne is of course the cohost for the VR Workforce Studio Podcast and directs the Wilson Workforce and Rehabilitation Center foundation. They bring you these inspiring podcast. So, it’s great to be here, Anne and thanks.
Anne: So Rick, we wanted to start with a few stats on autism. Which we will also include in the show notes at vrworkforcestudio.com. About one percent of the world population has autism spectrum disorders and that is according to the CDC. In the United States it’s estimated that one and sixty-eight births results in someone with autism spectrum disorder.
Anne: I know, yeah, these blew me away. I didn’t realize. And more than three point five Americans live with autism spectrum disorder.
Anne: Three point five million
Rick: Three point five million Americans, that’s a staggering number. It’s easy to let a number like that sort of pass by you. When I think of a lot of people, I think of New York City
Rick: And you spend a lot of time on planes (laughing), until we were fortunate enough to have you come work for our foundation. Did you ever make it out to Yankee Stadium?
Anne: Oh yes, oh yes.
Rick: Were you there at capacity or full?
Anne: At capacity sure, sure!
Rick: What did that feel like? I mean when you looked around, what did you see?
Anne: It feels like the whole world is in there and you know, I only think it’s about fifty thousand seats.
Rick: You’re right uh, just to touch over fifty thousand seats is the capacity at Yankee Stadium. So let’s imagine we could talk Billy Joel into doing an autism concert in Yankee Stadium for everyone in the nation who had autism, so we would line up three point five million people outside Yankee Stadium. The first day, we let in the first fifty thousand. The second day we let in another fifty thousand, the third day we let in another fifty thousand. Do you realize if we started that on Memorial Day and one concert a day, every day of the work week, we would have to hold concerts between Memorial Day and Labor Day to get all those people into that concert?
Rick: Say it another way, take seventy coliseum or sports arenas, the size of Yankee Stadium, filled to capacity and that’s the number of people we are talking about.
Anne: Wow, wow. And it’s guaranteed that you know or love, or work with someone who has autism in this case.
Rick: That’s what makes today’s show, in our opinion, so compelling. The number of people, there are sixty million people in America who have a disability and three point five million of those people have autism. So, this is a significant issue and it’s a proven fact that individuals with autism make great workers. So, that’s what our show is all about today.
Anne: Before we get to our big inspiration showcase
Singers: VR – Briefing-Room.
Anne: We welcome DR. Kristen Chesser, who is the Associate Director of behavioral health at Wilson Workforce and Rehabilitation Center. Welcome, Dr. Chesser!
Dr. Chesser: Thank you, thank you for having me.
Rick: Dr. Chesser, the statics are simply overwhelming. On an average day, you run into folk who have these challenges. How does it manifest itself? What do you see in a person with autism who’s thinking about going to work?
Dr. Chesser: We see some difficulties navigating the residential environment and the classroom and the academic environment as well. Interacting with peers, developing those social relationships. So, we work with our occupational therapy department to help them not be overwhelmed with the classroom environment, having everyone around any noise. We like to create an environment where they can be successful.
Anne: So Kristen you are a clinician, knowing what you know, if you owned a business why would you hire someone with autism?
Dr. Chesser: People with autism, actually a lot of individuals with disabilities will work harder than most people that do not have disabilities, so, they are very hard workers. Once they get that routine down and that structure, they will go above and beyond more than which you will ever even imagine and sometimes it just having to manipulate the environment they are working in. If it is that sensory input concept that is an issue for the student. So really identifying what they need, whether it’s a set of headphones and they’ll be fine and they will work as long as you tell them what they need to do and have that structure.
Rick: So how do you help them. You talked about designing interventions and helpful strategies. What do you do?
Dr. Chesser: So we work with our students as soon as they come in. We work with them on developing supports that would be helpful for them what had worked in the past really identifying what their needs are as they navigate this campus. Do they need assistance with developing peer relationships, do they need assistance with social skills, so through our Communication services department, through our Behavioral Health department, through Occupational Therapy we can create a plan that is individualized towards that student that really checks off those different things that they may need to be successful here. So we have social literacy group which is geared more towards employment and social interactions in an employment setting with your supervisor and with your co-workers. We have autism support group which helps our students navigate the residential environment. It gives them an outlet and a support group of other individuals with autism. It is a very neat group by the way, I do love it. We have our Communications Skills group, and then we have individual supports, as well, and then any type of medication management through our Psychology Department.
Academically, our students with autism excel. So, we do have academics supports available as for all of our students. So, we really focus on those social skills, we look at being proactive and providing supports up front to help them adjust to this residential environment, but also help them transfer those skills into an employment setting, as well.
Anne: Well, we appreciate you being here Kristen. It has been wonderful and thank you so much for all the work you do here at the Center, and the tremendous outcomes that you are receiving from these great clients you are working with.
Kristen: Thank you
Anne: Today we welcome Dr. Alex Cullison, author of the “Journey of Inches,” and his son Alex.
Rick: We are really excited, we have heard so much about this book “Journey of Inches” and Alex is an incredible success story from WWRC. So It’s wonderful, isn’t it Anne to have these two great folks here in the Podcast studio this morning.
Anne: It is, it’s a real honor, I’m looking forward to hearing a little bit more about the journey.
Rick: Welcome to the program Alex and Dr. Cullison!
Dr. Cullison: Thank you, Rick.
Alex: Thank you very much.
Rick: So Alex, we would like to get started with a favorite question that Anne and I have. It starts like this, if you met one person with autism—
Anne: You’ve met one person with autism. So, Alex, what is your life like living with autism?
Alex: It has its ups and downs but of course with a lot of dedication from my parents, they’ve helped balance out my imbalances like the challenges I go through. But thanks to their help I manage to overcome a lot of hurdles in my life.
Rick: Alex, Anne and I want to hear all about your exciting and courageous vocational rehabilitation program.
Anne: Yes, yes, so let’s dive right in with the end of the story.
Rick: Well, we hear you have a very exciting job and we want to hear all about it.
Alex: I’m working at a computer tech company, called CSC but it’s now called CSRA. But to be honest, I kind of don’t like that name change. CSC sounds more cool.
Anne: What are you doing with CSRA?
Alex: I worked on trying to set up some mailings that have some pin cards in them that are directed towards important people like politicians and some celebrities, perhaps.
Rick: So Alex, tell us what is a pin card?
Alex: Pin cards are mailed out to important people like politicians and they are used in emergencies like in hurricanes and storms and other natural disasters. And I feel that’s an important job that people should do and it’s more than enough to help give back to my country for what they’ve did more than enough for me.
Anne: Okay Alex, you’ve mentioned that you’ve mailed somethings to celebrities; can you tell us a little bit about that?
Alex: One of them was actually directed to Arnold Schwarzenegger himself.
Rick: Well, we heard about the challenges someone with Autism has; what are of your challenges?
Alex: There are a few things, not just me, but I’m sure of a lot of normal people have this problem as well, like trying to understand how to properly pay taxes. That stuffs hard to do.
Rick: That has nothing to do with Autism, we all struggle with that.
(laughing in agreement)
Alex: That’s what I’m saying, we all struggle.
Rick: But, you’re working?
Rick: You have part of what drives Vocational Rehabilitation is the Workforce and Opportunities Act and the need for a family sustaining wage. Do you have a family sustaining wage?
Alex: Yes, I do.
Rick: That’s a celebration from a Vocational Rehabilitation standpoint, you’re earning a living, right?
Alex: Yes, I am. I’m working at CSRA.
Rick: Well, let’s get dad in the conversation.
Anne: You’ve watched this story unfold. I’d like for you to tell Alex what you see as the real payoffs of his job.
Dr. Cullison: Well you get a good wage, you get vacation, you get medical benefits, they match some of your retirement benefits, you get 401k –
Rick: Living large
Dr. Cullison: Yes, living large
Rick: (Laughing in agreement) living large
Dr. Cullison: It truly is in my mind a success story
Rick: Dr. Cullison, I have three adult children, all working with benefits and I know how that feels. Let me ask you this, how does it feel to realize that your son is now working full time with benefits?
Dr. Cullison: Every time my son drives off to work, I mean – I just feel so good about what it is you all have prepared him for here.
Anne: Sometimes it is hard for people with autism to navigate social relationships. What was it like for you to be around so many different people in Vocational Rehabilitation here at Wilson?
Alex: I met many friends who had similar interest with mine like video games and they all seemed fairly normal for what they were there for. You wouldn’t even know they had disabilities or social disorders by looking at them, they all seems fairly normal and as a result, I became very enamored with the idea of trying to make better friends like that and learn to accept those people for what they are.
Rick: So, Alex, you’re away from home, you’re out of your routine; you have lots of new challenges. That has to be hard for anyone, particularly someone with Autism. What kept you on track?
Alex: The thing that got me focused was some scare tactics like, “you better get this done or you’re going to fail this and” so I had to be motivated somehow and being scared actually helped me learn as weird as that may sound but it actually helped and as a result, I improved myself . Of course there were some subjects I struggled with; there were some subjects I passed with flying colors. But overall, it worked out in the end.
Rick: Dr.Cullison, you’ve watched your son go through this extensive vocational rehabilitation process here at Wilson. Like we talked about how he got out of his shell, how he met other people, but when it comes to job preparation what do you think the take-aways were most impactful for Alex?
Dr. Cullision: His were customer service and data base management and all these different things. Which are very valuable – I mean it’s more than just a certificate of completion; these are things for when they are sitting in front of an employer, they can put in front of the employer and say “I did this, this is what I know”.
Anne: So Alex, in a sense this was like going off to college, what was your biggest employment readiness lesson?
Alex: Never leave your alarm clock close to your side table or really close to you, cause if you reach out, you’re going to press the button and go back to sleep. And I had difficulty understanding why I wasn’t getting up and sometimes my dad had to blow an air horn to get me up and I got really upset. He even poured water on me to get me up.
Anne: Just like the movies.
Rick: We both have kids in middle school; we know the struggles of getting kids out of the bed. The air horn is a new and initiative strategy that we might try.
Dr. Cullison: We only had to do it a couple of times.
Alex: But in all seriousness, keep it away from you so it’s loud enough for you to hear it. So you’re forced to walk up and set it down because people might have had the struggle. So that’s my advice to you.
Anne: The book is called, “A Journey of Inches” . Dr. Cullision so many people have found value in your family’s story and in the book.
Dr. Cullison: It is our life experiences, from the moment that we found out Alexander was Autistic initially from Fairfax County Child Find, they had just said he was retarded and which was a real kick in the stomach and just said that his potential in this world was going to be highly marginalized. Diane and I step back and really just decided that we were going to approach this methodically, we’re not going to discount what anyone saying. Back this is the early nineties and it was really a dark age for this type of information about Autism, it was all clumped together with many other disabilities, there wasn’t much out there in terms of material and we just did a lot of research, investigation and fought very hard to identify what it is that we could do for our son. Of course, we did find out that our son is Autistic and that he wasn’t retarded. And then dealing with it starts off with elementary school, they had them all in a one Special Ed class, one size fits all and that was actually making him worse. I mean, it wasn’t conducive for any type of educational benefit. And we fought and lobbied and wrote letters and did whatever it took to get him into a class, a smaller class with children that had similar disabilities. And he grew and he prospered and he learned and it went well. But it’s really important for parents to realize that you don’t get what the child deserves, you get what negotiate and most cases everyone that you are dealing with are well meaning and well-intentioned but no one knows your child as good as you. And if you feel as that, when you’re going to these evaluations, IEP meeting, and things like that, you have to be an advocate for your child. Just don’t let them wash over you and sign off on everything, get involved, understand exactly what they are doing.
Rick: It seems like one of the lessons you’ve learned Dr. Cullision, is how not just to be an advocate but to be a champion.
Dr. Cullison: I actually became a substitute teacher during that time so I could have my finger on the pulse of what was going on in the school. So I wasn’t an outsider, I was an insider and it really helped a great deal.
Anne: So Dr. Cullision, you put yourself right in the middle of the school system and learned the system inside and out?
Dr. Cullison: Every IEP meeting, every eligibility meeting, everything that we had was a challenge and unfortunately, our son, God bless him. He wanted to do good, he wanted to learn, he wanted to be accepted, he wanted to be involved, which was very hard for him.
Anne: So, what would you want parents in a similar situation to know?
Dr. Cullision: People need to realize that in all this research, I don’t think there is going to be a silver bullet or a cure for people that already have Autism. I really think that most of the research is going to identify how people like Alexander became autistic and maybe identify ways to help people not to become autistic and however that is, maybe in childbirth or wherever it stems from, they really don’t know but in terms of folks like Alexander, I don’t think there’s going to be a pill that you can take that is going to cure it.
Rick: Alex Cullison is one of the most inspiring young men that we’ve met in a while.
Anne: Absolutely, I could not agree more, Rick.
Rick: I think others would agree with you too, Anne. Alex, how does it feel to be so inspiring to others?
Alex: It feels really good, it feels like I’ve made a difference in their lives and I hope I continue to further help people overcome their challenges and like more ways than one and also continue to help be an inspiration for those who are struggling in the world whether it comes to like normal people, or although we hesitate to use that word, and when it comes to disabled people as well. I hope to continue my successes, not only to make my parents proud or not only for myself but also to inspire others.
Rick: That’s a good question from the book and this is an area we deal with a lot and that as parents as you reach later years and as the end of your life approaches and not just you, in many families, the greatest fear is reaching the end of life and being concerned about what will happen to your child, if they have a disability. Where do you see yourself right now in terms of that confidence in terms of Alex is going to be successful?
Dr. Cullision: Rick, you’ve hit that achilles heal, that one issue that keeps Diane and I up every night. Something that we are concerned about. Alexander doesn’t have anybody but us, we’re it. And even if we leave him financially well off or a structured type of economic position where if he’s smart, he doesn’t have to necessarily worry about money. I mean like maybe a small condo and he has a car and he drives to work. Even if we tried to set that all up for him so when we pass, we know that he has his own place, he’s got a car, we worry about people trying to take it away from him. We believe Alexander, if he was in a studio or nice little condo, paying just homeowners fee and his taxes and taking care of his car and getting groceries, I think he would be fine. You know, and I think he could live his life. But as we all know sitting in this room, life will throw you curve balls and he doesn’t need a custodian from the court, he doesn’t need someone dictating to him or some attorney or trust, that’s going to stalk him and do all these things for him. But, sometimes he’s just going to need a mentor, a trusted person in his life that he could call and say “I just got this in the mail, I don’t understand it. What are they doing or what do I need to do?” This is the type of support system that I would just love to see and if I could do it myself, I would. But I think that we can, as any parent can with a high functioning child, put them into a position to be successful but there is going to come a time where they’re going to need advice from someone who has their best interest at heart and I would love to find where that can be because we’ll be gone. And that’s the thing that keeps us awake at night.
Rick: So, Dr. Cullison, what was the biggest obstacle in Alex’s life before vocational rehabilitation?
Dr. Cullison: Anytime you have a person with any disabilities that is dependent upon somebody else to get to work, to go to the store, to go to a movie, that degree of dependency and obligation to take care of this person becomes overwhelming.
Anne: So Alex, how did it feel when you realized that you were licensed to drive?
Alex: It felt like an accomplishment and it was—it certainly should help other people like me know that with a car, you basically can do whatever you want. Even though, ironically it’s a responsibility you must have but with all of that being said, it should help make you feel like you have one of the ultimate freedoms that you can have.
Dr. Cullison: For him to have the independence to drive to work on his own and come home. He drives from Fairfax to Falls Church which some of the worst commute in the nation and he does it—
Rick: My blood pressure just went up
Dr. Cullison: And he does it. He drives to restaurants on his own, he goes to the movies on his own, and he gets his own gas. I mean he does all of this of his own and he knows how to use a GPS, put in an address of where he wants to go. This degree of freedom – that you all – he may never been to do this, something like this in an area like Fairfax but here in this area. It’s nice, it’s rural, safe, and not a lot of cars, this facility got him involved and builds up his confidence. It’s an amazing thing for him to have his driver’s license.
Rick: We love humor here on the podcast, don’t we?
Anne: We do, Rick. We keep it light.
Rick: If you listen to our outtakes, you know we love humor.
Anne: Oh, yeah.
Rick: Alex, we would love to talk with you about humor. See, humor is such a part of socialization; it’s a part of the human experience but because of autism, some people struggle understanding humor and integrating into their daily life. But I’m told that you have an incredibly unique perspective on humor and you actually studied it so that you can fit in, interact with others, and be more successful on the job. Tell us about humor.
Alex: Actually, I just thought up my own style and also learned it from — some of it has to do with influential stuff and resources like maybe from my other humor and some of my own at the same time.
Rick: You studied humor?
Alex: In my up and coming book that I’m writing called, “Twilight Sun”, there’s a character named Adele in it. Who is a snarky- raven kind of character, she’s – and I think my humor shines through mostly in that, and in that character alone; she’s a very logical type and very humorous and tells it how it is. But one of the styles of humor is repeating a certain phase or a word over and over, that just seems really funny. (Laughing) Here’s a good one, almost like Nigeria Falls, I’m sure you might’ve heard this joke before. I once met this girl and then he met this guy – and then something happened between them and then they met at Nigeria Falls and he goes like,” what happen at Nigeria Falls? NIGERIA FALLS (LAUGHING) and I slowly turned and I step and I step then I beat him up. It’s a very funny joke and I suggest that you look it up on YouTube like with the Three Stooges and with Abbott and Costello—it never gets old.
Dr. Cullison: We were getting ready — a little background – we were getting ready to go to Nigeria Falls for Thanksgiving, we actually changed our mind because everything is mostly closed, we’re going to wait until the season is over. But every time I say the word, cause I grew up with the Three Stooges with Abbott and Costello. Because every time I see or say things that say Nigeria Falls, I remember this routine that they did and Alexander would say “why are you smiling?” Once I show you this, you’ll never be able to hear or see the word Nigeria Falls, without thinking of this routine and then I shared both routines—Abbott and Costello does it and the Three Stooges do it and it’s just funny.
Rick: All these links we’ve talked about on the show today will be in the show notes at vrworkforcestudio.com. So be sure and check those out. Alex, any final thoughts?
Alex: Anyway, the last thing I want to add is about balance, its – it teaches about physically balancing yourself and also not only on the inside of you but also on the outside. It teaches you to balance out your mental stuff like whether or not you are having problems. And there’s also a technique in there—sort of meditation type technique that the main characters use and it was actually inspired by Kung Fu with David Carradine. That’s a really good show; I highly suggest that you check it out. It teaches really good things and one more thing about balance; it teaches you how to overcome your own personal problems and it’s basically like – here’s a good quote I think I’m teaching that I might teach in the future, “Basically diving down into your own personal hells and then coming out of that hell with a smile on your face but with bumps and bruises in the process. You can walk away smiling and feeling proud of those bruises.”
Rick: The book is, “The Journey of Inches” by Dr. Alex Cullision and our guest today has been Paul Alexander Cullision, author, I.T. specialist, and adult with high functioning autism, who moves into a bright future with balance.
Anne: Well it’s been an honor to be a part of this podcast today, Rick.
Rick: Always a pleasure.
Anne: It’s been wonderful having you here Dr. Cullision and you, Alex. We appreciate your time
Alex: Thank you very much.
Rick: If you would like to find out more information about Wilson Workforce and Rehabilitation Center foundation and we can find you at –
Anne: Yes, you can visit our website at wwwrcf.org
Rick: Until next time I’m Rick Sizemore
Anne: And I’m Anne Hudlow
Rick: Sharing the courageous stories of vocational rehabilitation.
Support for the WWRC Foundation comes from the Virginia Manufacturer Association, creating the best business environment in the United States for world class advance technology businesses to manufacture and headquarter their companies for maximum productivity and profitability. And CVS health, helping people find their path to better health.