On Thursday March 15, 2012 Anne Barbano had a radio telephone interview with filmmaker Rich Everts on his film, The United States of Autism. This is what transpired...
Anne Barbano: So, folks you are listening to the Next Frontier, an
autism and diagnosis program, every Thursday at 6pm Eastern Standard Time.
We are at 105.9 fm locally. And we are at the Radiator.org... all over the world.
Here's a story within a story...
I received a communication a couple years ago, from a guy called Rich Everts.
He said something like this, "You made a film on autism and I'd like to talk to you a bit on that process...because I'm going to make one."
Kind of like that, Rich.
We called each other. We chatted at length. I even gave him a good candidate to be in his film ---never happened, but his film did! By golly, he did get funding from Pepsi Refresh Project and he made his film, The United States of Autism.
It sure is exciting to hear about one's idea - see it in the womb- then watch the birth.
I love the trailer. I bet you will too!
Sound of trailer playing.
Rich Everts' voice on film trailer:
Did you ever have a birthday wish that you knew it would take a miracle to come true? Well, this is the story about those miracles. This one starts in the remote mountains of Pennsylvania in a house my Pop and Grammy built with their bare hands.
And throughout my school years I was the constant new kid, attending 10 different schools in 9 years until I somehow ended up in one of the best boarding schools in the world.
Well, that opened the door to college, where I met my future wife freshman year.
And after this tornado met this volcano, we had Tommy our junior year. Over the next 12 years, I went through 15 different jobs; I had two failed businesses, and went bankrupt.
And through all of that, nothing hurt like when my son stopped speaking at the age of two.
He's been silent now for nearly a decade... even still- he's so full of life.
For him I decided to take a trip across America covering 11,000 miles in 40 days, speaking with families and individuals in 5 different languages to deal with this thing called autism personally everyday.
What I found was far greater than any one man's story
Now I understand. It can only be told in a place called America
Singing from film: ... Some say that life can't rewind, even when time is on your side. Some say that pain...
Anne Barbano: Well Rich, "You did it!
Rich Everts: Yes, it's all done
Anne Barbano: And now you are sending it to the Sundance Festival?
Rich Everts: Um, well, we started submitting it to quite a few festivals actually. We are well on our way here in 2012.
Anne Barbano: Wow! Rich, I'm going to get right into the film. And thank you so much for letting me preview it. I know a lot of folks haven't seen it yet.....
Rich Everts: Very few.
Anne Barbano: So, I am very, very grateful. Ah, Rich, there is a lot of diversity in your film in the area of using lots of different nationalities and religions within your families.
Rich Everts: Yes
Anne Barbano: What gave you this idea?
Rich Everts: Well, I mean, there are a number of things that play into this.
One of the things that we wanted to do, my wife and I from the very beginning, was, to capture the diversity of America in this film while we are talking about families and individuals affected by autism.
It's very important to show how it interacts with different families' different cultures, religions, ethnicities to kind of show that yeah, there are some differences but at the same time there are a lot of similarities.
And this is the things we wanted to focus on we wanted to showcase for people.
And also, my wife, my wife and I are kind of - I think it's called, an inter-ethnic marriage...My wife's Hispanic and that's her, she's a first generation American. My family's from the Pocono's. They've been here from the 1700'so you know, so it's kind of uh... we're one of those newer kinds of families here in America and we wanted to showcase that as well with all the families we met.
Anne Barbano:
At some point we are going to talk about your son but just pointing out some things that I noticed in the film and I just want to talk to you about it. Now religion is strong in the film. There are a lot of references to God. And I'm wondering is that on purpose?
Rich Everts: um hum, Well, I think it's very important. I think um, you know, over 90% of the world believes in a god of some sort, or you know a higher power. And, you know, it's important to the story as well. um, Now, of course, that's s not everyone and that's the great thing about this, is that we're able to show the different ways that people interact with the Devine - with the special higher power. And um, it wasn't necessarily on purpose. However I'm glad that it did play a part in the film.
Anne Barbano: I was watching this late at night, you know I have a child with autism, right?
Rich Everts: Sure, sure.
Anne Barbano: I'm sneaking this. I'm on my computer. I've got to watch your film. I loved it. But I was thinking where's the filmmaker coming from...Rich, we spoke at great length a while ago before you made the film.
But, it was coming up - and I thought, ok, United States of America - Patriotic God. I'm hearing that a lot. You're going to get questions about that. And it's not so much to question why - Why do you believe in God, you know, but it is a big part of your film. And uh, those questions will come up so...
I was excited to see the folks I've interviewed on my radio show in your film. There are Twitter folks on my stream...I mean, really it was like old home week.
(Rich & Anne: chuckle)
Anne Barbano: I saw a mom, who actually, you know each time, you were introducing a new family, not each time, but a lot of them. I said, oh she's got my film! I remember a friend sent my film to one of your families. So, I realized that there was connectedness with all the autism families. I'm the viewer, and I'm understanding some of these, uh, families that you've reached out to.
Rich Everts: That's great. That's really what we wanted to accomplish through the film. We wanted to reach out as many people as we can. As you know, the autism movement has a lot of different niches and a lot of different groups of people who interact. And uh, people don't always agree, people don't always even get along.
However, you know, a lot of us in the community know who each other are through all the different work that goes on. And it's really great to, you know, continue to stay with them over time, to stay up-to-date and kind of grow together.
And I'm glad that that came out in the film for you.
Anne Barbano: Small, small world! I don't know if it's going to happen for everyone, but, for me, and it could be because I do a radio show. I thought "I know these folks!" I know a lot of them!
(Laughter)
So, your choices of the political and the medical and the therapeutic figures in the film...You have a talk with Representative Dan Burton. The vaccine issue comes up. And I'm going to be asking you about your beliefs, you understand that, right?
Rich Everts: Yup, sure
Anne Barbano: So. What happens and just using him, and then Dr. Kenneth Bock --- Brock or Bock?
Rich Everts: Kenneth Bock
Anne Barbano: He's an M.D. He's a little bit on the fringe. Not real uh, mainstream. Then there is Sonrise, which is another therapeutic intervention.
So, again, I was thinking, Rich, what's your belief around these issues, Rich?
Rich Everts: Sure, sure, the easy one's first, then we'll get into the hard stuff.
Anne Barbano: Sure.
Rich Everts: The easy ones are things like the Sonrise Program. That really worked its way in, not because necessarily of the therapeutic approach, but because it's part of Raun Kaufman's story. And the important thing about Ron Kauffman is that he considers himself recovered from autism. And his identity has separated itself from autism itself. And, this is a very unique situation because most self advocates identify very much with their autism. In fact, it becomes their dominating trait of their identity. And this is something that we wanted to show, that there are people that that are not ...(unintelligible).
And that's something that worked itself into the story because of what he does and he believes. That's what we wanted to capture with that. Now...um, let's see here...
Anne Barbano: Dr Kenneth Bock
Rich Everts: Dr. Ken Bock. Now, the bio-medical approach to autism is very popular. I know a lot of people out there who do that. Dr. Kenneth Bock is a very wonderful M.D. and we've known a number of families that have worked through him who take the biomedical approach. And, it was interesting to listen to him talk a lot about what he is trying to do - some of the toxicity in the environment, some of those other issues.
And I thought that it was important to have that in there, simply because it is kind of a hot topic. And there are a lot of parents out there who do pursue that, and there's a lot of people who don't pursue that and really believe that stuff is real quackery, that there are other things that are going on. But, I kind of have it thrown in there just because of the number of families we know who do pursue that.
Anne Barbano: And then Representative Dan Burton. Years ago, people were applauding. This was when autism wasn't the popular diagnosis it is today. He was actually talking about the vaccine issue. You were mentioning that in your film.
Rich Everts: Yeah, sure. Well, actually at no point do I mention the vaccine issue. That's not the purpose of my film. What I do is, I find people and let them talk... about what they want to talk about. The reason that we spoke with Representative Burton... we originally were not going to speak to Representative Burton. I had - I can't tell you who they are for their own privacy - but we were set to meet with congressional leaders. And one of them, you know, who is a - I don't want to say - who ran the president candidate circle and they all cancelled on us about a day before we were scheduled to come out and we had scheduled about a month and a half, two months in advance to speak with these folks.
So, we arrived a day out of Washington and they cancelled, oh my gosh, you know, all these interviews are done and you know, what are we going to do?
What's interesting is that when you are doing a documentary, a feature documentary sometimes a story plays out that you don't anticipate. And this was one of those where we just sent out a call to people and said, "Look! Anybody who has dealt with autism, anybody out there, in Washington", we are coming in, who wants to talk?"
Representative Burton was the first to respond. And he got back to us and said "I would love to talk to you." He serves on a bunch of committees in Washington---very important committees in Washington. And he co-sponsored the Combating Autism Act. He played a key part in putting those things together. It was interesting to get his perspective.
And one of the most important things I got out of it was that he was personally involved with autism. And it seems to be that the only people who really gave us the time of the day were people like that.
Anne Barbano: um hm, He's an (autism) grandfather, right?
Rich Everts: Yup. exactly, and he actually spent a long time talking about his grandson, which is why we worked that into the film.
Anne Barbano: So when I rounded these three folks up, I was thinking, "What's your belief around these issues, Rich?" And you, you stated that I think these were also the people who were attracted to you and getting into your film. You're saying that a lot of people stayed away or they weren't there when it came time to do filming, right?
Rich Everts: Ya, yes.
Anne Barbano: So, they are not exactly evidence based proponents, right?
Rich Everts: What do you mean by that?
Anne Barbano:
In other words, Representative Dan Burton still brings up the vaccine issue. Dr. Kenneth Bock definitely is not mainstream. Sonrise is "I've been cured and I can probably help you do that." It's not... it's not your typical, what I'm saying the mainstream thought.
Rich Everts: Yes.
Anne Barbano: And, you know, all us filmmakers, we are always telling a story.
So I'm just wondering, "What's your feeling about evidence-based therapies?"
Rich Everts: Right. Evidence-based therapies. Well, I think that's kind of an oxymoron because it's very difficult to find, you know, specific studies on things. I mean very few things become evidence-based until you put the money into the research to find the evidence. And so far the vast amount of the research money has gone into particular things that are easily quantifiable, and they make it very easy for people to get results.
And that's what they are looking for. Because any kind of program that can be massed produced then, to be able to send out to families okay-- I shouldn't say families, it's more about the school systems. They can say okay, they can mass produce this. Here's what you do: Here's the system. Boom, make it happen!
It's a lot easier to fund those and check your results.
I think that for many children those are perfectly fine. For a lot of children that's great.
And for many children they do great with it. And that's awesome! And they need that.
However, that doesn't work that way for all children or individuals.
They may have different learning styles. Their diagnosis may not even be correct.
They could have certain
symptoms that require entirely different than whoever the next kid is. They
may be developing on a different path.
And that particular evidence-based therapy doesn't work for them.
So, I think they have their place. I still think though that out there we have to continue to research options because it doesn't match every kid perfectly.
Anne Barbano: you talk about in your trailer ...heart wrenching At two years old your child stopped talking.
Rich Everts: Ya, progressive autism
Anne Barbano: I think of families that are not as trusting. I think of mainstream therapies.
I notice in the film, I kept looking for older people, and I know from doing my film. It's hard and we are going to have an older population soon.
Were they more difficult to find? Or did you make a decision to focus on the younger?
Rich Everts: No, um, we did send out application calls, so we did ask people to submit.
We did get from older folks. But, they were really bitter. I mean extremely bitter.
Anne Barbano: The older people with autism or the parents?
Rich Everts: Yup, yup, 45 and over. I don't think we got one application of someone, who actually had a story where it was a hopeful story where there is some power behind it. Not to say that autism isn't positive. That's an entirely separate issue with the neurodiversity movement.
But, you know, we didn't get the applications to really push out to many.
We did have some adults, you know, we had Sharon Da Vanport who , you know, is on the spectrum herself and has a son on the spectrum.
Anne Barbano: Aspergers, right?
Rich Everts: And then we had Alex Plank who is a neurodiversity advocate.
Anne Barbano: Yes, another Aspergers
Rich Everts: Yup, Aspergers. We did have someone who had autism who was older. That was Eric. He was with the Gallup family but he was in an institution. And so, he really didn't make it into the film and that's part of the story itself.
Anne Barbano: Yea. That was interesting. We don't want to give up the whole story, but we have to tell people a little bit what this is about. Rich, you know, your father gave you up. You have your - this whole story!
If you look at your blog or your website...you give so much of your story.
I've got to dig a little.
Your father, you said, gave you up when you were a child?
Rich Everts: My mother met someone else. My mother and father didn't really get together. And so my mother met someone else. Over a period of about a year and a half, my father signed over all the rights and I didn't see him again.
Anne Barbano: There is a brief place in the film where you show that aspect of your life.
I think you are walking with your dad, right?
Rich Everts: Yes...yes.
Anne Barbano: It's more of a voiceover. It looks as if you are looking for some wisdom from your father, as a parent, for your role as a parent of a child with autism...
Rich Everts: Yes
Anne Barbano: I was thinking to myself, I would have liked to have heard that conversation with your father.
Rich Everts: light chuckle in response.
Anne Barbano: I know you didn't have the mics on. But, uh the word faith comes up again. And it was getting to know you--you as the person who made the film too. Not just these families, but I always look at it as the chance to see the person behind the camera who has this idea for the film.
You are constantly editing and looking at what it is that I want to present.
So, I'm wondering, "What did you learn from making this film?"
Rich Everts: Wow, you know, not many people have actually asked me that question.
Anne Barbano: Well you are talking to someone who did it too, so I'm just...
Rich Everts: For sure, for sure,
I learned a couple of things. I've got to tell you. I'm putting out a book about my experience in putting the film together and what it has meant and some of the things that didn't make it into the film. There are over 100 hours of footage and you know that broke down to 93 minutes, so there are tons of things that did not get into there.
But I'll tell you, one of the most powerful moments for me was not in the film. We were, as a crew, traveling an incredible amount of distances, in short amounts of time, 16 and 18 hour days. My crew was exhausted...
Anne Barbano: Was your family with you?
Rich Everts: No, definitely not - because how can you bring someone profoundly affected by autism on 18 hour work days? I was separated from my family at that time. You know, it was a very challenging time.
We were going from San Francisco to LA. We had a couple of hours to burn, and we - the crew - we decided to stop by the Redwood Forest because we had never been there. And um, one of the things we saw there was the Sherman Tree which is the largest tree in the world. If I'm traveling halfway across the country, I've got to see is the largest tree in the world. Okay. It's just too cool to pass up!
So we get there. It's really late at night - its 9 o'clock.
The sun is starting to set. We had just shot (videotaped) on our way up a couple of bears running around in the forest. Okay. So we get there. It's dark, it's pitch black.
We have to go down all these steps to get there. So, we are running in the dark as we get out of the car with flashlights through bear covered forest to get to this tree.
And so we get down there and there is a big fence around the Sherman Tree.
Normally, I guess you're not supposed to go up and touch the tree.
But it was late at night, nobody was there, what are you going to do!
So, we (jumped) the fence!
We went over there.
We touched this tree.
Anne Barbano: You're only saying this on the radio, no one will hear! (giggle)
Rich Everts: its fine, it's fine. (Laughter in his voice)
We touched this tree. I've got to tell you, it was an experience unlike anything than I can really communicate to people. Um, I tried to... I'll try to flush it out in the book.
But there is something about being around ...something that has been there... um the tree's 2500 years old. I mean, It has been there since before Alexander the Great, you know, if that will give you some perspective. And to think about all the people who have come through there and touched this tree, all the things this tree has seen, all the things that this tree has been around.
And it really gave me a perspective about the things that come and go and about what we are doing.
As I'm meeting these families and talking with them and shaking their hands...and realizing that all the things that we worry about every day, these small things, in the grand scheme you know, they lose their immediacy of importance and you become, at least in my experience, you become much more relaxed, accepting of what 's going on in the autism movement, accepting of the family, realizing that it's going to be okay.
Ultimately, you know, certain things may not get solved. (Spoken tenderly) These answers may not come to everyone. And these things may not get fixed. But it's okay, you know. In the long game, things are going to work out for everyone for the most part. And...
Anne Barbano: Rich, I'm just going to jump in really quick.
How old is your son now?
Rich Everts: My son is two. Ah, sorry, he was two when he was diagnosed.
He's thirteen now.
Anne Barbano Thirteen. I thought so. You are talking to all of these people.
There are a lot of tears in this film - a lot.
Rich Everts: a lot of?
Anne Barbano: Tears... where people are telling you a story and they are re-living it.
They have so much love for their child. I mean, any parent whether or not you have any child with any difference other than the neurotypical, probably felt that, even if they don't feel it today, have probably felt it at some point on that journey. But, I'm just wondering ... we're talking about the movement , and I'm asking you coming out of a film...it sounds very philosophical, but did you feel that there was an important component in autism research that you would like to see? Or did you feel like it's not important anymore? What do you feel?
Rich Everts: No, look, I mean, research has its place in all movements. It's very important.
However, I would like to see going, if I were in charge, which I am not, at least yet!
If I had to take a look at something like that I would say, yes, we've got to look at therapies for families, I look at special therapy.
We should really be looking at genomics. Not in a "let's sequence autism" - eradicate autism- which is what a lot of the people in the neuro movement fear. Rightfully so, I would think.
But I think that things like specialized medicine. I think that a specialized vaccine schedule based on a person's DNA is long overdue. And, um, I think it will help mitigate a lot of the concerns out there.
I think, research into, um, other modalities of thinking about how to work with autism.
Research into maybe some sociological things - Like, how do we get training for the adults? How do we do a mass vocational training for some of these children who are kind of in the middle, you know, they're not dependent on their families any longer but they are certainly not able to live and function very well on their own.
How do we reach them?
There is some research that needs to be done in those areas.
Anne Barbano: I thought that you might be talking about, because my film really mentioned more of the people who are the caregivers and the instructors, about their kind of training.
Rich Everts: For sure.
Anne Barbano: It's interesting, because now you're looking at...we've grown too, that was six, seven years ago and I'd have a whole different film now.
But I'm just wondering, your game plan for your son, when you came back, I'm sure you were full of emotion...
When did you end your film? When did you wrap it up?
Rich Everts: The film ended in 2010. So, it's been out two years.
Anne Barbano: So, since that time, when you are at home with your son, did any thing change for you? Did you look at his life any differently?
Rich Everts: Well, for sure, it was an enormous change actually.
Anne Barbano: Did you change his programs? Did you change his life, his friends?
Rich Everts: Well, I mean. One of the things that changed, I think, is how we worked with him.
And I thank some of the people who have autism themselves, and also the children.
They really showed me a different way of thinking about handling the children or individuals with autism. We had always tried to treat him with a certain respect that, you know, he is doing the best that he can , That autism is something that we would like to , you know, eliminate from his life. Just help him develop further along his path.
And it really crystallized on this trip when I got back about treating him so much more age-appropriate, uh, than what we had assumed before.
And he was 11 when I got back. And so, oh, my gosh, here's a boy that is almost a teenager! What we would be doing if autism wasn't in this particular, you know, area of our lives. And, you know, we changed those things. And I think that that has really helped him develop a lot stronger.
Its at a point now, where his vocalization, his language is starting to come along a lot stronger and I think it's because of what we've done in that arena.
Anne Barbano: So I hear this from just different talks and shows we've done... um...maybe deciding that he is more capable than what you've realized in the past.
Rich Everts: Sure
Anne Barbano: You know sometimes when we give that respect back.
You know there's one guy who goes around [talking about] understanding and respect. I mean he talks about that, he's been on my show. I feel that maybe that's where some of this autism movement is going. Not to say that people do not have dire needs. There are families that are in dire, dire need of help.
Rich Everts: uh hm. I totally agree with that. We work with, through the foundation, we work with children who are profoundly affected, and I mean it's going to be very challenging for those families to get their children aid.
Anne Barbano: People just lost you. Let's talk about your foundation. What is your foundation?
Rich Everts: Well, it's called The Tommy Foundation. We founded it back in 2005. And originally we just started it up because we wanted to help local families find some volunteers for, you know, different programs they were running.
And uh, it just kind of grew from there.
And we ran into some people, "Hey we could use this." "Hey let's do that!" "Let's put a lot together." "Let's put some respite programs together." "Let's put some collegial training together."
You know, and before we knew it, here we are this past week, we announced that we are partnering with AutismAid, which is a group started by Larry Goldfarb, who is a very well-to-do man out of San Francisco who just put together a new organization. We are one of the first organizations on a national level to start working with him.
We're just growing very quickly and trying to maintain what we consider the most important thing, which is relationships with people.
We always say that research is not the most important thing. We want to deal with people. People are always the greatest asset. And that's kind of what we started back in 2005 and what stayed with us through the years.
Anne Barbano: So the Tommy Foundation was at first kind of local in Pennsylvania.
Rich Everts: Very local!
Anne Barbano: Now that you've done this film, I mean, the contacts and networking must be tremendous.
Rich Everts: Yes, absolutely.
Anne Barbano: So, Rich, and this doesn't really go with the interview, and I'm sorry, this is a conversation, but if we were out and just talking...
When you read your bio - I had to look up some of this - it says that you are certified in hypnosis, and I kept thinking "why did he want to be able to hypnotize people?" That was my first thought. Okay? And then the METT Face Recognition - I had to look that up - Micro Expression Training Tool. It teaches recognition of concealed emotions. Now I'm thinking that you're the CIA!
Rich Everts: (Chuckles) Sort of!
Anne Barbano: You are MENSA - m - e- n- s- a (Spelling it out) Member.
Rich Everts: Member, yes.
Anne Barbano: [MENSA] which is a high IQ society; so now I know you're smart. Which provides a forum for intellectual exchange for its members. So I'm thinking, "Why all this Rich?" Did it have something to do with your quest in this film?
Rich Everts: Uh...
Anne Barbano: All three things, the hypnosis, The METT Face Recognition the MENSA member...
Rich Everts: Well, I think that it all plays a part in everything. One of the things that I love ...is that I love understanding people. I want to know more about people. Not just on the surface, I really want to dig really deep into what motivates people. What makes people tick?
And the more I learn about people, including myself, the more forgiving I become. The more relaxed I become. For instance, METT Face Recognition. Being able to understand when people are doing deception. It's deception training.
People use it all the time for law enforcement, the CIA.
One of the things that I found is that the average person tells 3 or 4 lies every five minutes. We are constantly lying about things and deceiving each other. And often for good reasons - we are being polite. Yes. There is not a husband out there who doesn't know about being polite - unless he wants to sleep on the couch for a couple of weeks. You know, you just say certain answers...special constructs.
Anne Barbano: I have to smile...You know, we are not on television; we're on radio, so you can't see that I'm smiling as I'm listening to you. I thought that maybe this is to help autism. I didn't realize this is a personal pursuit.
Rich Everts: It is, but listen, when you understand those social cues what you are doing is you're learning to take it easy on people because you learn that we do all these things and it's okay. And for people with autism, we took that - I'm trying right now to take METT Face Recognition and work that into the autism movement because there are so many people, especially, women who are on the spectrum, who don't recognize social cues on people's faces and they go into abusive relationships. And it's a real issue and it's something that I was inspired to because of that.
Anne Barbano: So that came later.
Rich Everts: Yes, that came later. These are things that I was originally interested in - in personal development.
Anne Barbano: Rich, I said 20 to 30 minutes and I know that we've gone over. But I had a lot of fun seeking this out. And I have a little bit of a buzz in my earphone. But, um, I had a lot of fun seeking this out with you. Seeing it come to fruition. It really was fun, because I remember that conversation. You probably spoke to many people but we spoke at length, we may have had a few phone calls. And then I start seeing this in Twitter...Oh, my gosh, he made his film! You did this! I just want to wish you well as you raise funds. You're in Kickstarter. You're trying to get into a lot of different film festivals and you need some funds to do that, right?
Rich Everts: Yup. We need to travel places.
Anne Barbano: I wish you lots of luck and good will. It will be interesting to see what happens with all this. Let us know, I'm sure you will. I'm sure you will be putting this on Face book.
Rich Everts: Well, thank you so much for having us on the show, I mean, I love speaking with someone who is very knowledgeable about the autism movement, because as we start our press, there is going to be a lot of people who don't know anything about it. All they will be interested in talking about is vaccines!
Anne Barbano: (laugh) oh!
Rich Everts: You know how that works!
Anne Barbano: Well, I did a little bit on that note! Thanks so much, Rich. And say hello to your wife. She did come on my Face book and I was thrilled!
Rich Everts: I will. You have a great night.
Anne Barbano: Ok, You too
Rich E: Bye now.
Anne Barbano: Bye.