Other People's Words

AWN interview with Richard Everts, director of United States of Autism documentary

Posted in Uncategorized by Tera on June 23, 2010

Here’s a transcript of Autism Women’s Network’s interview with Richard Everts, the executive producer and director of the documentary The United States of Autism.

[Music]

Sharon daVanport: Good evening, everyone, and welcome to AWN radio. This is the Autism Women’s Network on Blogtalk. My name is Sharon daVanport and today is Wednesday, June 16, 2010. My guest for the evening will be Richard Everts. Richard is the executive producer and director of the upcoming autism documentary The United States of Autism. But first joining me right now is co-host Tricia Kenney. How are you this evening, Trish?

Tricia Kenney: I’m doing really well. How are you, Sharon?

Sharon daVanport: I’m doing really well.

Tricia Kenney: Good to hear. Before we get started, we do have a couple announcements to make. Our contest is still open for one of our lucky listeners to receive a GPS device plus one year of service from LifePROTEKT. All you need to do to be eligible is to e-mail us your personal story as to why your family member or loved one will benefit from a GPS locator, and we will enter your name into the contest. Just e-mail us at info AT autismwomensnetwork DOT org, and you’ll be able to be in the drawing. The drawing will be done at the end of the month. We’ll make the announcement at the end of this month. That’s two weeks away, so you still have time to get in there and give us your information, if you do want to win that device.

Sharon daVanport: It’s gonna be really exciting, isn’t it? When Lou was on the show a couple weeks ago, he explained how GPS works. I guess there are some kind of systems. Isn’t there Project Lifesaver in some communities? But not all communities have that, and so GPS is a really good thing to have, to be able to do a location-based device.

Tricia Kenney: It’s just another thing for you to have in your arsenal to protect your kid. It’s not just for autistic kids, but it really seems to fit into what our community needs. It’s just a wonderful thing. We’re gonna be doing this every month. We’re gonna have this until the end of the month, so if you do want this for a loved one, please send us your information as soon as you can.

Sharon daVanport: Right. And of course, we have our sponsor, b-Calm Sound, the Audio Sedation sound system. We’re also entering everyone’s name who is in the chat room in for a drawing of that in a couple weeks. We want everyone to know that if you come in and you join in the chat room, your name is automatically entered for the Audio Sedation sound system from b-Calm sound.

Also, I wanted to let everyone know that tomorrow’s show that was scheduled for 10:00 in the morning is going to be postponed. Please stay tuned for details: we’ll be posting the new show time just as soon as we get that coordinated with Dr. Shana Nichols. She’s gonna have to postpone it due to some last-minute changes. I wanted everyone to know that it’s really gonna be a great show with Shannon. She’s the author of the book Girls Growing Up on the Autism Spectrum. I just finished reading that not long ago, and it’s really a good book. Dr. Shana Nichols does a lot of talks at different conferences. She just has a really good understanding of females on the autism spectrum, so you won’t wanna miss that. She’s just recently opened up a new clinic in New York named ASPIRE. It’s a center for learning and development, and she’ll talk a little bit about that as well.

Tricia Kenney: It’s gonna be a really good show, so I hope you guys do stay tuned for those details of when it will be on. Also, if you would like to call in tonight with any questions or comments, you can do so. We also have the chat room up, so if you wanna send us questions or comments through there, we’ll be happy to say them on the air for you and ask our guest. We’ll try to get in as many as we can tonight.

Sharon daVanport: All righty. I guess we’re ready to get started then, Trish. So our guest this evening is Richard Everts, and Richard is going to be telling us about how he came up with the idea for the United States of Autism documentary. I’m just really excited to hear about all of this, because it’s just such a novel idea. So let’s go ahead and bring Richard on. Hello, Rich?

Richard Everts: Hi. How are you doing?

Sharon daVanport: I’m doing well. Thanks for joining us this evening.

Richard Everts: Great to be here, Sharon. Good to hear from you, Trish.

Tricia Kenney: You too.

Sharon daVanport: Well, I wanted us to get started this evening by just jumping in and having you tell everyone about the documentary: how you came up with this idea. It’s going to be quite unique. You’re going to be starting out on the 24 of June, and going for 40 days filming across the United States, totaling ten thousand miles and 21 families, two members of Congress, two members of the autism community who’ve had movies made about their life, as well as psychologists, physicians and different leaders throughout our nation. It’s going to be in five [first?] languages, is that correct?

Richard Everts: Yep.

Sharon daVanport: Wow. You’ve got a lot to tell us, then, Rick. [Laughter] You’d better start from the beginning then and tell us how you came up with this idea.

Richard Everts: Absolutely. Six or seven months ago, my wife and I started talking about putting together a film documenting some of the things we were seeing in the autism community. At that time, we really had a smaller idea: maybe we were gonna work in Pennsylvania and get a few families and then work east to talk about some of the things that we were doing.

My wife does a lot of different things. She’s Hispanic, so she works a lot in the Hispanic community. She was seeing a lot of different issues arising there with different disadvantages that people would have: underrepresentation, medical issues and early intervention and things. We started talking about putting this film together to bring life to a lot of these different things. What ended up happening was we heard about the Pepsi Refresh project from one of our volunteers in the organization, and we decided: “What the heck? Let’s just go forward and see what happens.”

It took us about 59 days of voting. It was pretty intense; we actually lost the first month. Then we geared up, got everybody psyched up again for another month of voting. We ended up pulling it out at the end there, and we got the full funding for the trip. We were like: “Okay. Let’s really do this right and make sure we represent everyone.” That’s how we got started.

Sharon daVanport: It’s really diverse. I was going through the names in the list. A lot of the names I recognized, a few of them I didn’t. Can you give our listeners an idea of the different ethnicities that will be represented and the diversity of the film?

Richard Everts: Sure. We really wanted to capture the diversity of the nation; to show that autism is something that affects everyone, no matter what their socio-economic class, ethnicity, race, anything like that. We have people from all the major Abrahamic religions, so we have Muslims, Christians, Judaism. We have people who are Asian, Hispanic.

We have peopel from different socio-economic backgrounds, so we have families that live completely on disability and have absolutely no money, to people who are much better off in terms of what they’ve been able to do for their family. We also have self-advocates that are gonna be in the film.

We have a lot of people who work on all different issues in the autism community, which I think was really central. We really wanted to grab people who represented different viewpoints. It seems like in the autism community, one of the things you run into a lot is a “my way or the highway” kind of mentality. We see it in the whole vaccine issue; we see it in neurodiversity; we see it in treatments, pro-cure versus services. Treatments, early interventions. It runs the whole gamut. We really wanted to be able to bring all these people together and focus on the families and what really matters—and that’s the kids. That kind of gets lost in the things you see on the day-to-day headlines.

Sharon daVanport: Very nice.

Tricia Kenney: Yeah, it is. It’s such a huge issue. I know so many people who are in the autism community and are in my networking groups like Facebook or Twitter, and that just goes on so much. I really wish people would focus more on the core issues—all that we share and all that we go through and what we’re all experiencing that’s so similar, and not really get so caught up in that other stuff. It’s really sad when you think of how much camaraderie there could be in the autism community, if not for these issues that come up.

Richard Everts: Yep. I absolutely agree. It’s one of the things that we’ve seen happen on things like Facebook, which is a main way for parents to communicate. We see a lot of nastiness going back and forth. It’s not the narrative that the autism community should really have. It’s something that we could accomplish a lot more by working together on our common issues.

Tricia Kenney: I agree.

Sharon daVanport: Isn’t that true? It is. It gets pretty scary out there in some of those networking sites. You can’t just say it’s one particular group. There’s some nastiness going on on every side. I’m a self-advocate and I’ve seen it with self-advocates attacking each other; I’ve seen it with organizations attacking another organization. Really? Seriously? Are we gonna do this, or are we gonna work towards really looking at the bigger picture in all of this?

I don’t get it. It makes it a little bit scary sometimes. Just a couple years ago, I used to comment a lot on blogs. I will barely comment on a blog now. My inbox will be full of people just cussing me out if I offer an opinion. It’s scary out there. [Laughter] It really is.

Tricia Kenney: What are you hoping to accomplish by showcasing all these families?

Richard Everts: Well, there’s a couple of things we’re really trying to accomplish. Number one: we really want to redefine what the autism narrative is on the national level. We wanna redefine it as something where we need to put the focus back on the families and the family services, and to be able to help the people who are here now cope with this condition. That’s the most important thing. If we can draw attention to that and bring national funding into the proper resources whoever’s working with these families, that’d be one of our goals.

Number two: One of my major goals is that the autism community is only so many people. We take this message and we need to take it to people around the country who are not affected by autism, who don’t really know anything about it. We need to introduce them to it a little bit, versus the few snippets they might see on an HBO special here or there, and they might say: “Oh, that’s nice.” We really need to get them emotionally involved, which is one of the reasons that we really wanna take a trip highlighting America.

We find a lot of similarities with what’s going on in the country with what’s happening in the autism community. There’s a lot of divisiveness; there’s a lot of people just getting on each other all the time. Once you break it down, there’s a lot of similar things that everybody wants. If we could just focus on the commonality versus all the things that make us different, there’s a lot more things that we could accomplish together. And we’re trying to intertwine those two ideas to be able to effect the narrative and actually take it to another audience as well.

Tricia Kenney: Um-hm.

Sharon daVanport: Right. This is just fantastic.

Tricia Kenney: I think that’s so important. It doesn’t do us a whole lot of good to keep preaching to the choir. We need to educate people outside of our community and talk with people outside of our community, and really get the world outside of us to understand what we’re going through and what our needs are. If we’re so concentrated on our little things that are going on, such as on Facebook, we’re not really getting a whole lot accomplished. There do need to be huge changes in legislation and schools and higher education and the workplace and so on and so forth. All these things need to be accomplished, and we’re not getting that done at this point.

Richard Everts: Yeah. Interesting you bring up about the legislation. Some of the families we’re interviewing are heavily involved in that. One of the families down in Oklahoma is heavily involved in passing Nick’s Law, which is legislation down there. One of the families up in New York state maybe a week ago passed new legislation for autism. This family that we’re interviewing was the central player in that. There’s a lot of other activists that we’re interviewing who fall along that line. Now I’ve started to help push that for them, and get their story out there to people.

Tricia Kenney: Wonderful.

Sharon daVanport: Wow. I’ve told a lot of our listeners already: My children and I are gonna be interviewed by you guys for the film, and I’m a little bit nervous. I told you that. [Laughter] You’re coming to Lincoln, Nebraska and it’s a little bit scary.

I have to say this just for everyone to understand. If you really wonder or think that you really don’t do much, just talk to Rich. He has a way of pointing this out. I can remember saying; “I really don’t know what to say to you about my life. I really feel like I just don’t have much going on.” But then he talks about other things going on in the community and says: “You’ve been a part of this; your son does this. How does your daughter feel about this?”

The way you bring it all together, it really helped me to sit back and see the film in a different way. Not so much as my family having a part in it, but just the diversity. I really didn’t feel like if you wanted it to be diverse, that there would even be a place in there for us. But I look at my son and how much my son has even accomplished through the years—he really has. I really appreciate how you were able to even help me appreciate that. I just thought: “Well, my life is a little bit boring,” but you made it sound so exciting. [Laughter]

Richard Everts: I think parents all around underestimate what they actually do on a daily basis. You gotta remember: What most people do in America right now, they’ll work maybe 8-10 hours, come home and watch TV and maybe do some stuff with the kids and that’s it. Maybe take a family vacation every once in a while. The level of activism and what these parents and self-advocates and individuals all around the country are actually doing for their community for their fellow human being is quite impressive. It really is. To be able to have these people understand that…For instance, one of the families that we’re going off to see is up in Wisconsin. I’m really looking forward to seeing this family.

Sharon daVanport: That’s where Tricia’s from. [Laughter]

Richard Everts: We’re heading up to Kinnosha on the lake. I talked with this woman who had sent me an e-mail because when she sent in her application, she had never seen in any of the films or any of the movies an African-American family. It was very upsetting to her and to her family. She has a wonderful, amazing story. I can’t wait for people to hear it. When I told her she was accepted, she was crying on the phone. She said: “I cannot believe it. This is amazing.”

That’s what we’re trying to capture. We want people to understand that it doesn’t matter who you are, where you come from. There’s gonna be a connection out there. Every family has a connection out there. People are gonna see these families and they’re gonna be able to say things like: “Oh, I can relate to that.” Or: “If that person did it, I can do it.” Maybe this person went the extra mile. Maybe this other person went to this level for their community. You know what? Maybe I could do that, too.” It’s that inspiration level that’s one of the things we’re definitely seeking in the movie.

Tricia Kenney: It’s so wonderful that there’s not this targeted agenda where it’s only going to appeal to this sector of the autism community. You’re not just feeding into one theory or something and excluding everyone else. I think it’s wonderful that you are going to show just how similar we all are.

Richard Everts: I’m very excited about that aspect of it, for sure.

Sharon daVanport: You said that you’re going to be interviewing two members of Congress. Is it going to be in D.C.? Is it actually gonna be in Washington, D.C., or is it gonna be just different places throughout the US?

Richard Everts: Washington better prepare; we’re coming.

Sharon daVanport: [Laughter] You’re gonna be marching up to the Capitol, huh?

Richard Everts: We are. We’re gonna shoot in Washington D.C.; we’re gonna tape some [beautiful?] footage there. We’re gonna be interviewing former senator Rick Santorum and Congressman [Diana] DeGette. You probably haven’t heard of her too much. Senator Santorum was a Republican; Senator DeGette is a Democrat. They are the key sponsors of the Combating Autism Act of 2006. They were [unknown] with the co-sponsors to the Senate and DeGette got it through the House.

We’re gonna interview them and ask them about the legislation and their experience with that, and how they feel five years later now that the Act is ready to expire, how do they they think it happened and what do we do next? So we’re really excited about being able to interview both of them. So that’s what we’re working on. We have another surprise as well. I’ll put that off for maybe when we’re talking on the road.

Tricia Kenney: [Laughter]

Sharon daVanport: Okay, yeah. I wanna let our listeners know, too, that we’re gonna be having Rich and the crew check in with us on AWN radio, and we’re gonna be getting updates throughout this time. Also I want you to explain to our listeners how they can keep up with it as well. It’s not like we’re gonna have a show every day, but you’re gonna be blogging every day, right?

Richard Everts: Absolutely. We wanna get people involved. If you go to our website USofAutism.com, you can follow us on our blog. We will have daily updates as we travel around the country. They can keep tabs on us there. We do have some stuff up on the blog now about some things we’ve done pre-production, f you’re interested in finding out more about how a film like this comes together. There’s a bunch of information there. If anybody wants to have their resources added to our resource page, just let us know and we can make an addition.

Sharon daVanport: How can they contact you for that, Rich?

Richard Everts: There’s a contact form on there. That’s probably the best way to get a hold of us. We have somebody who’s dedicated to our website and will make sure to get the proper information to the website for you.

Sharon daVanport: Now, Rick, you have kind of a nice thing with NBC. Didn’t NBC pick something up recently close to where you live in Pennsylvania? What happened there?

Richard Everts: One of the reasons that we’re very positive about where this film is going is that the Pepsi corporation has a lot of branding tied into the film. They’ve got some skin in the game, so to speak. They seek to advocate for us in a lot of different ways. They contacted NBC and NBC came out to our home and did an interview with us to talk about the film and everything that we’re doing. They posted it in the local Philadelphia area as an example of a project that got funding through Pepsi. It helped us get exposure. It was great because we were able to talk with some people at NBC when we wanna do further things for publicizing the movie later on.

Tricia Kenney: Wow. Very nice. Where are you gonna be starting?

Richard Everts: We’re actually gonna be starting the film in Lancaster. We’re going to to be filming on my birthday, the 23 of June, and we’re gonna start the film revolving around my birthday. It’s gonna be the starting point, and I won’t tell you more about the plot, but essentially, we start there. We film in Lancaster for about four days; we have three families there. Then we’ll head out West. We’ll go through Illinois, up to Wisconsin, down to Nebraska, Iowa, up to Colorado, California, Oklahoma, Texas, Alabama, Florida, D.C., New Jersey, New York, Massachusetts, and then upstate New York. And then [unknown] we go.

Sharon daVanport: Wow. And your last day is August 3 or something like that?

Richard Everts: August 2. We’re actually gonna be filming that morning. We do have some individuals who we may have to capture later on, because of the timing. Those are mostly political leaders and doctors and physicians, but essentially, we’re gonna get the core of the movie during that 40-day trip.

Sharon daVanport: Wow.

Tricia Kenney: You’re gonna have Temple Grandin?

Richard Everts: We’ve been talking with Temple. As you can imagine, Temple has a very full schedule. She and I have gone back and forth a couple of times to figure out when we can pin her down. She is interested to be in the film; it’s just really tying her down and getting her on camera. [Unknown] we can do that.

Tricia Kenney: So who else is gonna be in there?

Sharon daVanport: Can you name the families?

Richard Everts: Sure; yeah. I can tell you a little bit about them if you want. I’ll just go in alphabetical order. Tunde Brazlik, she’s a Sunni Muslim family. She’s an immigrant down in Orlando; she actually came over from Hungary during the Cold War. She has a young son on the spectrum. We have Lorette Brewster; she has a son Deemy, who just started talking in his teens. She’s in Wisconsin. We have Liz and Chris Carotto; she has three boys on the spectrum and they’re all at different points. She actually is the president of a local non-profit, and she runs an outreach program at the largest flea market in Pennsylvania.

Sharon daVanport: Wow.

Richard Everts: Evelyn and Clay Cox who are actually out of Utah—I totally forgot about Utah. They’re a Mormon family, and the thing about their story is the health issues that arose with her son actually caused her health to deteriorate as well. They’ve been able to overcome that. Of course, Sharon and your family. I think your listeners probably know a lot about you.

Sharon daVanport: Right. You can go on.

Richard Everts: [Laughter] We have Barbara and Cesar Figuroa who have three kids, twins Erick who is on the spectrum and Alexis who is totally unaffected. They’re actually from Puerto Rico and they have no services there. They had high-paying jobs; they left everything behind and came to Lancaster, Pennsylvania to get services and work here. They have a great story. Raymond and Helen Gallup are out of New Jersey, and they have a son Eric who is an adult on the spectrum. He’s in a residential facility and they have a very interesting story about how that came about. They actually did a lot of work with Dr. Wakefield, so they definitely [unknown] in the autism community.

Shelley and Major Mark Huhtanen, they’re actually out of Fort Hood, Texas. He’s a major in the military deployed to Mosul during the height of the Iraq war. Shelley actually advocates for he Exceptional Family Members Program for the base, which is the largest military base in the country. She actually spoke to Congress a number of times about [unknown] for military families.

Michelle and Ralph Iallonardi, they’re out of New Jersey. You actually might remember them from the Autism Speaks video. The have the three boys—Jackson, Bennet and Lucas—and a lot of things have changed in their life. We’re looking forward to giving people an update on that so they can actually see the progression of children who receive different kinds of services. They have a great story.

Jinyoung Lee and Youngtai An are Korean and Chinese, and they have a young boy, Elvin, who’s on the spectrum. He has epilepsy along with autism, so he’s on the more severe end.

Carrie and Luis Lopez were actually [unknown] to us. Their daughter, Emily, created the Lemonade for Autism movement, which you might’ve heard of out in L.A. She was five years old when she started this. She goes out to places like Malibu, Beverly Hills, the beach and holds fundraisers for autism and the HollyRod Foundation.

Sharon daVanport: Yeah. She’s just awesome. She’s on Twitter all the time. That little girl is just something else. I tell you, she’s amazing.

Richard Everts: I’m definitely looking forward to getting them on camera.

Sharon daVanport: Yeah.

Tricia Kenney: Yeah.

Richard Everts: Greg and Isis Milk, they’re actually out of Vinejo [sp?] which is outside of San Fransisco. Greg is a former pastor and Isis is an RN. He actually stays at home, so it’s kind of a role-reversal where Dad stays at home. They have a great story about that. There’s a lot of faith involved in that one. I’m really excited to hear them talk about that.

Holly and David Neibaur, they’re out of Philadelphia. They have twin girls; Robyn is on the spectrum. Holly was a college professor and gave that up to become an ABA therapist. She now advocates for early intervention. One of the places that we’re gonna be going for them is Sesame Street, which is neat. They like to go there.

Tricia Kenney: Wow.

Sharon daVanport: Aw.

Richard Everts: Alex Plank. I’m sure know Alex.

Tricia Kenney: Um-hm.

Sharon daVanport: I know Alex.

Richard Everts: He was real excited that I was gonna be on the show tonight. I guess he’s gonna be on a panel with you at the Autism Society of America conference.

Sharon daVanport: Um, a panel?

Richard Everts: Yeah. I believe he mentioned being on a panel with you. But Alex is the founder and maintainer of WrongPlanet.net, which is the largest website for the neurodiversity movement for individuals. He actually had 35,000 members on that board now.

Tricia Kenney: It’s been such a huge success.

Richard Everts: Yeah. I’m really excited. We didn’t actually talk about Wrong Planet too much. We talked about the fact that he’s making movies and he’s an avid mountain biker, which is great. I can’t wait to get some footage of that.

Sharon daVanport: [Laughter]

Richard Everts: We have Ileana Reyes. She’s a single Hispanic mom. She has three kids, one on the spectrum. She’s down in Miami.

Sharon daVanport: Is her child a girl or a boy on the spectrum?

Richard Everts: Boy.

Sharon daVanport: Okay. So far, all these families have sons on the spectrum?

Tricia Kenney: There’s one with a girl, I think.

Richard Everts: We definitely have some girls on there, as well.

Sharon daVanport: Oh, okay.

Richard Everts: We have Wayne and Robyne Rhode. I talked about them a little bit. They’re out in Oklahoma and they’re the activists trying to get Nick’s Law passed.

Sharon daVanport: Oh, yeah.

Richard Everts: Trish and Gary Washburn, who are the New York family I talked about earlier who are putting through the legislation up there. Tim and Cheri Welsh.

Sharon daVanport: Oh, yeah. He’s on Twitter: TannersDad

Richard Everts: Yep. He’s one of the most prolific Twitterers out there. We have Linda and Mark Wessels, who are actually out of Iowa. Because they’re in Iowa, which is the beginning of all the primaries, they always have first shot at asking all the candidates about autism. They’ve been able to ask all the candidates personally about their views and be able to discuss all the different things that are gonna go on. Sam, who’s their son, actually was able to talk to John McCain personally.

Sharon daVanport: Wow.

Tricia Kenney: Wow.

Richard Everts: And Crystal Worley, she’s a single mom out of Alabama, and she has two kids. She actually started a skateboarding foundation for autism down in Alabama, which as far as I know is the only one of its kind.

Tricia Kenney: Oh, cool.

Sharon daVanport: Wow.

Richard Everts: So we have quite a bunch of different families in there. You can find all those families and more information about them on the website.

Sharon daVanport: Wow.

Tricia Kenney: We have a caller in queue, so I’m gonna bring them on. Go ahead—you’re on the air.

Caller: Hello. I had a question. I was wondering what Richard thought about helping money with kids that are in juvenile hall that need therapy and treatment costs a lot of money.

Sharon daVanport: I’m not sure I understand the question. Are you asking Richard what he thinks about treatment? About juvenile hall?

Caller: And how a lot of therapies cost a lot of money, and how maybe the state could pay more money.

Sharon daVanport: Okay. So are you asking about services, then? What Rich thinks about services?

Caller: Yeah.

Richard Everts: I think that’s a great question. One of the challenges that we’ve seen with these families already in our short interviews is that there’s a vast, vast disparity between what families can do based upon their financial situation. Everyone knows because of the autism legislation on a statewide basis that some of the services they can get are very limited coverage with the insurance company. Obviously, not everything is covered.

Then once you go to the state level, you’re dealing with things like Medicaid, Medicare, and those systems don’t pay very well to doctors. If you follow the health legislation that went through this past year, you understand this is one of the major sticking points. So health disparity is a major problem. When you get on the state level and you’re dealing with residential facilities, juvenile facilities, they have really limited resources. So they’re limited to things that are very evidence-based.

Sharon daVanport: How will your film be capturing that part of it?

Richard Everts: In our film, one of the things we wanna capture is what each family’s doing to handle what’s going on in their life. If they’re using therapies for their children, what are those therapies? If they’re seeking specific medical care, what is that care? How did they go about getting it? If there is no care, what is the reason? We really wanna highlight these issues and highlight the health disparity. It’s a major issue, and it’s not just in juvenile facilities, which it is. But it’s also broken down by things like race and ethnicity.

I do a lot of work at a School of Public Health in New York out of Columbia, and one of the things that we find is that children in the African-American community generally do not get diagnosed until they’re three, five years old—maybe even later.

Sharon daVanport: I’ve heard that.

Richard Everts: If you’re going for early intervention services—and that’s the main thing that you wanna push. A lot of states are—then they’re out of luck. By the time they’re school age, they’ve missed so many key years. Now, children can always [unknown], but the most effective services at that young age, they miss out on. The same thing in the Hispanic community. We wanna raise these issues. We want people to be able to see them and really be able to talk on a national level about how to fix it.

Sharon daVanport: Wow, that is just really wonderful, Rich. That really is. Thank you to the caller for calling in, as well. I wanted to take the last few minutes of the show today and have you give out the information again on where people can find all of the different things going on with the film, and leave you with anything else you wanted to let our listeners know.

Richard Everts: They can learn anything they want about the film at USofAutism.com. That’s our website. We do keep that up to date and you can check out everything there. If you have any questions or comments, feel free to contact us. I’m gonna be on the road and I’ll try to get to all of the e-mails that I can. I love to hear from people; I love to talk with people. I’d love to hear what you have to say.

In terms of some of the other things we’re looking forward to with the film, I’m really looking forward to meeting these families face to face, and I’m really looking forward to telling a good story. I really want people to understand that there’s more to autism than what they see on a few TV episodes, or what they hear from their cousins, uncles, nephews, third roommate twice removed: “Oh, I know. I heard about autism from him.” No, there’s more to it and we wanna be able to capture that and show that it may be a diagnosis, but it’s not a prognosis. There’s no limit. We’re trying to remove that idea that there’s some kind of permanent limit on people.

Sharon daVanport: And how about locally? I’d like for you to tell our listeners what you and your wife do locally there in Pennsylvania. You head the Tommy Foundation, correct?

Richard Everts: Yep, absolutely. It was named after our son. It was started back in 2005 and we provide services to families locally. We provide a lot of training for families; we’ve trained about 200 people in the last year or so. We do a lot of work with the college crowd, and what we’re finding is that college students are familiar with it. They know what’s going on. Generation Y, 18 to 21, they good a good beat on things.

Sharon daVanport: For autism?

Richard Everts: Yep, because they have a nephew. Or they have a brother or a sister or a niece. It doesn’t matter. They know somebody personally. When they come in, they’re looking for some way to help. We lure them towards working one-on-one with a family or helping with advocacy or all kinds of things.

My wife is probably one of the most amazing women. And yes, I’m biased. But my wife is awesome. Not only does she work with our son who’s on the spectrum—he’s 11, non-verbal, and so we have those challenges that we work through. She works a lot with my son on a one-on-one basis. She also does a lot of stuff with the foundation. A lot the moms in that area in central Pennsylvania come to her with issues and: “What do we do?” She’s able to push people in the right direction, no matter what they’re looking for.

She also serves as Hispanic coordinator for a parent education network in Pennsylvania. Anytime there’s people who don’t know anything about services…somebody just came a couple weeks ago asking if there was anything in Lancaster for Hispanic families. Yes, there is. There’s tons of resources. We have a bunch of [unknown] to new parents who didn’t have any information at all. None. Their kids are five years old. So we’re able to get them information—”Okay, let’s get the ball rolling for these people.” That’s a lot of what we do at the foundation. I’m really excited about that as well.

Tricia Kenney: When will we be able to see this documentary once it’s done?

Richard Everts: We have to finish up post-production by May of 2011, according to our grant. Generally, films are in post-production for anywhere from 9 to 12 months. The film festivals start in the summer usually, and then they go all fall into the Academy Awards. We’re trying to get our film into that track, starting next summer.

Sharon daVanport: Wow. It’s truly amazing to think that you’re gonna set out and in 40 days you’re going to dedicate yourself. You should plug the crew, here. Why don’t you tell everyone before we sign off about your amazing crew?

Richard Everts: I think they are crazy to follow me around the country. I love them. The director of cinematography, his name’s Rene. He is out of Los Angeles and he’s had his own documentary picked up by Discovery and by the Oprah network that’ll be filming. He did that documentary Street Dogs of South Central from that area in Los Angeles. He also has worked on things like Hell’s Kitchen, Nanny 911, a lot of these bigger shows. He’s very familiar with this kind of work. He gave me an extremely reduced rate to come out and do this, because he really believes in the cause. I was excited to hear about that.

Sharon daVanport: Oh, nice.

Richard Everts: We have Cassie Lees. She just graduated from Franklin and Marshall Magna Cum Laude. She won a bunch of awards for her film work. She’s actually shooting a horror movie—she’s the director of cinematography—as of this week. Once she finishes up that project, she’s coming to work for us. I’m really excited to have her on board and her expertise.

Roseleny Ubinus, she actually came to Franklin and Marshall; she’s a sophomore now. She’s taking the summer off. Instead of doing grand jobs or partying all summer, she’s decided to come around the country and help us put together a movie. She’s gonna volunteer with the foundation.

We have a lot of people who work with us. We have professional artists—Jamie Marshall out of Williamsburgh, PA. She does a ton of film music work and designed a lot of our graphics for us. My wife is the production manager, and she does a lot of the autism stuff and advises me on what we need to do with each of these people. That’s what we’ve been putting together.

Sharon daVanport: Very nice. Wow, I’m looking forward to it.

Tricia Kenney: It sounds like an adventure.

Sharon daVanport: [Laughter] You sound like you’ve got the energy to do it, Rich. Your voice comes through up and it just seems like you’ve really got the pep and the energy to get this done. I’m thinking we can expect a really great documentary. I’m looking forward to seeing the diversity that you’re going to be able to capture.

Richard Everts: Well, thank you so much. I really think it’s going to be a great film. I am really excited. It’s not just a film about me. A lot of people are going to be looking at this movie, saying; “This represents us.” I wanna make sure that we put out a good quality movie out there, that people are gonna be proud of and can say: “You wanna know what my life is like? Watch this.” That’s what we’re looking to do.

Sharon daVanport: All right. I wanna thank you, and we will be in touch. AWN radio’s going to be getting regular updates. On the times where you might be too busy on the road, we’ll definitely get your wife to hop on and give some updates as well. We’ll work with both of you on keeping up with the road trip for 40 days.

Richard Everts: Thank you so much.

Sharon daVanport: You have a great birthday next week, on the kickoff day. That’s the 23 you’re gonna start filming. It’s your birthday and then it goes from there.

Richard Everts: Yep. Absolutely.

Sharon daVanport: All right. Thank you so much for joining us this evening. We will be in touch within the next week, okay?

Richard Everts: Thank you, Sharon. Thank you, Trish. Have a great day.

Tricia Kenney: Thank you. And happy birthday.

Richard Everts: Thank you

Sharon daVanport: All right. Bye-bye.

Richard Everts: Bye-bye.

[Richard Everts hangs up].

Sharon daVanport: Oh, gosh, Trish, that’s tiring just to even hear. [Laughter]

Tricia Kenney: I know. I was here thinking: “Gosh, I don’t wanna wait that long. I wanna see it right away!” [Laughter]

Sharon daVanport: Aw. Time goes by fast when you’re having fun. We’ll just have fun this next year, and it’ll go by fast.

Tricia Kenney: [Laughter] We’ll just keep asking him all the time: “Is it done yet? Is it done yet? Can we see it yet?” [Laughterr]

Sharon daVanport: I wanna thank everyone for joining us this evening. We wanna thank everyone who joined us in the chat room and thank everyone who joined us on the switchboard. We had many callers listening in on the switchboard. I just want to remind everyone about the contest. Remember to send us an e-mail at info AT autismwomensnetwork DOT org and let us know that you wanna enter the contest for the GPS locator and one year of service from LifePROTEKT. I guess that’s gonna do it for us.

Tricia Kenney: All right. Sounds good. See you next time.

Sharon daVanport: All right. Bye. Thanks, Tricia, and good evening.

Tricia Kenney: You too.

Sharon daVanport: Bye, everyone.

[End]

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One Response

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  1. Adelaide Dupont said, on July 3, 2010 at 1:23 am

    Great to read the transcript and learn more about the families.

    Some things which impressed me were the skating foundation from Alabama and the Iowa primaries.


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