Other People's Words

Interview w/ Dana Commandatore of RethinkingAutism.com

Posted in Uncategorized by Tera on December 23, 2010

This is a transcript of Autism Women’s Network’s interview with Dana Commandatore of RethinkingAutism.com.

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport and today is Monday, December 20, 2010. Joining me now is our co-host, Tricia Kenney.

Tricia Kenney: Hi, Sharon.

Sharon daVanport: How are you doing today?

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

Sharon daVanport: I’m doing well, doing well, yeah.

Tricia Kenney: Getting ready for Christmas?

Sharon daVanport: Just getting ready for the holiday week.

Tricia Kenney: Yeah.

Sharon daVanport: I know. [Laughter] We’re a sensory-friendly family around here, so we’re keeping things really low-key. We’ve learned through the years it’s really a great thing to head off that spectacular celebration with a very low-key week leading up to it, so the day isn’t totally a disaster. There’s so much to be happy and excited about, so I’ve learned to just do that with my kiddo and myself, and it works out really well.

Tricia Kenney: Yeah. There is a lot of pressure. I know everybody’s feeling the pinch right now, because we’re so close. Everybody’s got cooking and wrapping and houses to prepare for guests. Oh, the pressure, the pressure. Fortunately, I’m not hosting anything at my house. I’m baking a lot of cookies, but I’m taking them away with me.

Sharon daVanport: Oh, that’s right. You did cookies this year. That’s right. You were telling me about that. That’s so nice. I wish I was at your house eating all the cookies, Trish.

Tricia Kenney: [Chuckles] I know.

Sharon daVanport: We’ve got a few quick announcements, Tricia, before we get started. I wanted to let everybody know a couple of things just really quick before we bring on our guest for today, Dana Commandatore of RethinkingAutism.com. First, AWN radio will be broadcasting a special Thursday edition this week. Our guest will be Melissa Mooney.

Many of you probably recognize Melissa’s name from the video she recently made. Melissa was a student teacher doing her internship when she reported child abuse going on in the school where she was earning her credit hours. Instead of Melissa being appreciated for her bravery, she was instead ruthlessly attacked online, in person (not meaning physically, but attacked verbally), being accused of lying, saying that the comments she made years ago, which were taken out of context, what they were saying should discredit her.

Melissa is an adult on the autism spectrum, diagnosed with Asperger’s, and she further states that her credibility was called into question by not only discrediting her because she’s on the autism spectrum, but just by saying suddenly she wasn’t doing what she needed to be doing. Just unbelievable stuff. I don’t want to get into the details of it, because I’d rather have Melissa come on and be able to tell her story on Thurstday. But again, that’s going to be on Thursday, December 23. The showtimes will be one PM Eastern, noon Central. I believe that’s going to be 10 AM Pacific. So that should be interesting, Tricia.

Tricia Kenney: Yeah. That is just an incredible story. We hear a lot of adults on the spectrum who don’t disclose on the job and in a school setting when they’re adults, and it’s sad.

Sharon daVanport: Right.

Tricia Kenney: It’s sad that you shouldn’t be able to get accommodations if you need them because something like this might happen, and I think it’s really great that we’re going to be bringing this to light. I think it’s a really important subject.

Sharon daVanport: It really is; it really is. You’ll just have to tune in to hear what she has to say. I visited with her myself on the phone last week. I’d spoken to her attorney a couple of times before, but finally when he put us in touch with her, I couldn’t believe what she told me. These are things she’s going to be able to actually share with us and with our listeners, so I just hope everybody can join us, and if not, later. You know you can just go to our page and lisen to the podcast.

Tricia Kenney: Definitely. And the second thing we wanted to bring up today is our radio sponsor, LifePROTEKT, they provide a lucky listener every month with a GPS locator and one year of service, and we do a drawing every month through our radio show. But right now we’re going to put it on hold. We’re doing some updates and upgrades with that program, so that’s going to be over the next few weeks. We’re just going to put a hold on the prize drawing for now.

We will definitely announce when we will be having the next drawing, so please stay tuned for that. You can still continue to send in your entries for the contest. We haven’t stopped it; we’re just putting it on hold for now until those upgrades are done. So if you do know anyone with a child or if you yourself have a child who can benefit from this device for wandering, just submit your story to us at info AT autismwomensnetwork DOT org and you’ll be entered.

Sharon daVanport: Absolutely. And we’re just happy that these upgrades are going on, because we’ve been told that there’s going to be some more accurate GPS device, or…

Tricia Kenney: Stronger battery power and stronger life in it, and they’ll be able to search out futher distances and all that stuff. So, good stuff, definitely.

Sharon daVanport: Right. And then lastly, we wanted to mention our weekly radio show for next week on Monday, December 27. We will be welcoming back to the show Temple Grandin. We’re happy to have temple back to discuss next week harnessing the power within your child by tapping into their full potential. So join us next Monday for that.

Tricia Kenney: Yep, it should be really good. It’s always good to talk with Temple. She’s just done so much amazing work.

Sharon daVanport: Right; right. Okay. Well, with that said, I’d like to welcome back to AWN radio a very special guest and a friend of ours, Dana Commandatore. Welcome back to the show, Dana.

Dana Commandatore: Hi. How are you guys?

Tricia Kenney: Good. How are you?

Dana Commandatore: I am good. I am in southern California where it’s been raining forever and will continue.

Sharon daVanport: Right. [Chuckles]

Tricia Kenney: Yeah. They said there’s going to be some flooding and stuff going on there, so be dry.

Dana Commandatore: I will. We will try. We’ll all try. With my son off from school this week and the dogs home, it’s going to be difficult for my husband, so I wish him luck.

[Laughter]

Sharon daVanport: Yay, Michael!

Dana Commandatore: Yes.

Sharon daVanport: Oh, my goodness.

Dana Commandatore: He is such a good [man?]

Sharon daVanport: Aw.

Tricia Kenney: And clean shaven again, I hear.

Dana Commandatore: Yes, he is clean shaven again. After the month of November, where he grew a moustace to raise awarness for men’s health issues, he has shaved it off. And I’m grateful. [Laughter]

Sharon daVanport: All right. Okay.

Tricia Kenney: Well, why don’t you tell us a little bit about your background and why you got into the autism community and started making videos. How did you get thrust into all this?

Dana Commandatore: That’s a good choice of words there, Tricia: I got thrust into this. It all started when my son…It was around this time of year, about six years ago, when I found out that my son was autistic. I really had no reference for autism whatsoever. I hadn’t seen Rainman; I hadn’t seen Rainman until about two weeks ago, actually, when it was on TV. Knew nothing about autism. Had heard it before, but was completely ignorant to anything about it, which maybe worked to our benefit. My husband had a cousin who had an autistic child, and that was all we knew about it.

Once he was diagnosed, we just started doing research snd I think I came across a very small group of people that were incredibly helpful and very positive. I just went along that path, and tried to remain as open-minded and positive about the whole situation as we could. And my son was diagnoesd with autism. He’s definitely as most people say middle-of-the-road autistic.

Tricia Kenney: That’s very young for him to have been diagnosed. He’s only, how old? Seven?

Dana Commandatore: He’s eight. No, he’s eight. He just turned eight in November.

Tricia Kenney: So he was very young when he got diagnosed.

Dana Commandatore: He was just two when he was diagnosed, and I think it was very obvious. I did what everybody else does and goes online and looks up the symptoms, and I think every single one was apparent. It was just: “Yes, that’s him; that’s him; that’s him; that’s him.” And there was no doubt in my mind that he was autistic after reading that. His signs I would say were very easy to read, once you knew what you were looking for.

Sharon daVanport: What were some of those, Dana, just so our listeners know what your personal autism experience was with your son?

Dana Commandatore: Well, I can go back as far as when he was about three months old. There was a point where my husband and I were convinced that he was either blind or deaf or both. We never said anything to each other, and then one day we were both like: “Do you think he could be blind? Do you think he could be deaf?” We didn’t think he was tracking things the way we would…Being our only child. He wasn’t tracking our voices or the television that was on or toys a certain way. He was tracking things very differently, so I’m glad to see that they talk about that now a lot as being one of the early signs.

As far as developmental milestones, he met all those, as far as sitting up, crawling, all that stuff, except for speech. That came much, much later. But there was that. There was a lot of what we now call non-purposeful play. I do think it serves a purpose, but it’s just not a typical purpose.

Tricia Kenney: Right; right.

Dana Commandatore: So instead of using crayons to write, he would roll them off a table for a very long time and just watch them fall. He did a lot of things that were just outside the box.

Tricia Kenney: I always thought that stuff was so interesting. When I would see my son do stuff like that, I’m like: “Look what a little scientist he is. He’s learning the different things he can do with that.” It never struck me that every other child didn’t do that. [Laughter] I just thought: “Wow, this kid is just a genius,” when he would look at things in a different way. I was like: “Look at him utilizing his brain!”

Sharon daVanport: Right.

Dana Commandatore: No, it is interesting. One of the things that I find funny is he didn’t develop his lining up obsession until a little bit later in life. But he was more of a chaotic kid. I’d clean up all the toys in his room and he lived in basically a big closet in New York City. We were living there at the time. He had a very small room. We’d clean up all his toys, we’d line everything up, and then we’d leave him in there and come back 45 seconds later and everything would be all over the place. [Chuckles]

Sharon daVanport: Aw. [Laughter]

Dana Commandatore: He loves chaos. Absolutely loves it.

Sharon daVanport: All right. He knows what he likes. That’s okay, Dana. Now, after you found out that your son was diagnosed with autism, was it at that point you said that you met a community of like-minded people who were very positive. When was it that you decided that you really wanted to start speaking out and encouraging more of this positive talk?

Dana Commandatore: Well, that came later. Yeah, that definitely came later. We spent a couple years with him in doing a very modified form of ABA at home and speech therapy, which I think was incredibly invaluable. Getting a good speech therapist early on makes a huge difference.

Sharon daVanport: It did for my son as well, yeah.

Dana Commandatore: Yeah. I think a good speech therapist can naturally work with a child a see what motivates them and figure out a way to communicate. Our speech therapist early on really helped us find other ways of communicating while speech wasn’t always there—wasn’t there really at all, which was very, very helpful. I think figuring out ways to communicate lessens the frustration and the anger in any child or any person. So that’s key. Communication is key, whether it’s verbal or non-verbal, whether it’s through touch or eyesight, if you can pick up on those cues, it’s much easier to form a relationship and motivation.

After we came out of that and I went back to work full-time and he started school, I’d started paying attention a lot more to the world going on around me. That’s when I started hearing in the mainstream media a lot of talk from people like Jenny McCarthy. She would be on Larry King or on Oprah, because I believe her son was diagnosed around the same time my son was. She had a very different experience than I had, or at least was talking about it in a very different way. I’d have people coming up to me when I’d say my son was autistic. In a weird way I was very proud of him whenever I said it, and I was always taken aback when people would look at us and say: “Oh, I’m sorry.”

Tricia Kenney: Yeah.

Dana Commandatore: That sort of thing. I’m like: “No, no. It’s okay.”

[Laughter]

Sharon daVanport: Right.

Dana Commandatore: “You don’t need to be sorry. Please don’t feel sorry for him.”

Tricia Kenney: Umhm.

Dana Commandatore: “It’s okay. We’re fine with this.” So that’s when I started to realize that there needs to be an alternative message that needs to reach across, come out of the autism community, the adult autism community an get into the mainstream media, so that people are not always talking about autism as a tragedy, or as I see in the news a lot these days, “autism threat.”

Tricia Kenney: Yeah.

Sharon daVanport: Right.

Dana Commandatore: Like it’s a terrorist threat.

Sharon daVanport: And Dana, you have a lovely way of explaining this. So explain for our listeners out there who are equating…Some people aren’t stretching their way of thinking and looking at it. When you say: “Don’t feel sorry for my son,” you’re not saying that your son doesn’t have challenges and doesn’t need support. You’re saying what? Why don’t you explain that, because I love the way you explain this?

Dana Commandatore: We’ll see if I can do this. [Laughter] My son has a lot of challenges and they can be debilitating at times and they can really stop him from doing things that he may want to do. His anxiety is severe; he has a lot of trouble with his expressive language. His receptive language is all there. We learned that early on, so we were very careful about what we said in front of him and what others say in front of him. Michaelangelo is an incredibly interesting, funny, caring, sympathetic, loving little boy. He loves my husband and I and needs us. We look at him as somebody who…

[Jim Sinclair in his piece “Don’t Mourn for Us” puts it best. I hate to even try to change that or ever claim it’s something that I think of. But you’ve got a child who’s here and living with us who does not communicate the way that we do. He needs a guide, and we as parents are trying to guide him towards being as independent and happy as he can as an adult. Whatever that means, we’ll see. Only time will tell what that can be.

Tricia Kenney: Right.

Dana Commandatore: But he is who he is. There’s no changing that. There’s no medicine, there’s no diet, there’s no strict behavioral plan that will do all that. Most of it comes from a relationship, and we figured that out early on, that we’re not going to dramatically try to change him or do anything. We’re just going to try to make him as happy and independent as possible.

Sharon daVanport: Right.

Dana Commandatore: The challenges that he faces, we’ll figure out ways to overcome them or to deal with them. And hopefully, my goal is for him to either find another person that he could share his life with at some point, if he wants that. But I think all of us do. I think all of us want something or someone to share our lives with, so we’re just trying to gear him up and prepare him for that.

Sharon daVanport: Right. So let’s fast-forward just a little bit. You’ve got all this going on with him; you’re learning that positive outlook in addressing the challenges as needed. How are you then reaching out to the autism community, and what are you finding at that point, coupled with the stuff that you’ve already mentioned? What [could?] you really focus on?

Dana Commandatore: Well, what I did was I was fortunate to meet some friends like yourselves and some other adults who are either on the spectrum or are very involved. I noticed that they had so much information that was helpful that nobody else seemed to have.

Tricia Kenney: How did you find autistic adults?

Dana Commandatore: I heard about the ad campaign that was put out a few years ago about the Ransom Notes campaign in New York City. “We have your son. We are going to…”

Tricia Kenney: That’s the one, yeah.

Dana Commandatore: Yes. “He’ll never be able to have friends,” and goes through this whole thing. “Signed, Autism.” And I said to myself: “Oh, my goodness! Who is doing this? How can this happen?” And I ended up contacting the Autistic Self-Advocacy Network because I had seen Ari Ne’eman on Good Morning America. That was a turning point for me; that’s when I realized thta there is a community out there that thinks the way I do, and there’s actually a name to a movement, which wasn’t as important to me as the fact that there were these people there who were like-minded and were fighting for more important things, like quality of life and education, and just things that really were lacking in the autism conversation.

So I decided to use my advertising background, marketing and creative, and my husband and I decided to put together a website that could challenge the conventional ways of thinking, when it came to autism, and try to get people through videos to see that there is a whole other way out there. To a lot of the people that may be listening to this station, people who are just having kids diagnosed, they don’t understand how radical it is to think that autism does not necessarily need to be cured. It needs to be more understood, and what that difference is.

Tricia Kenney: Umhm.

Sharon daVanport: Right.

Tricia Kenney: What I think was really important, too, is that when parents do get a diagnosis, it doesn’t have to be dread. It doesn’t have to be this scary unknown. Their child is not dying.

Dana Commandatore: No. That was something that was said to me right when my son was diagnosed, that really put me on edge. The psychologist handed me a packet of papers and said: “Your son is autistic,” and I said: “Okay, what do we do?” and she said: “Well, you need time to mourn.” And I said: “Well, is he going to die?” And the woman just looked at me. She’s like: “Oh, no!” I’m like: “Well, then what do I need to mourn for? I need to learn and educate myself and move on.” We need to stop presenting autism to newly-diagnosed parents that way. They need to get much more hope and support.

And that’s what is lacking the most, is the support. Chances are, you are going to come across somebody in your family or your close friends that has an autistic child, or you yourself may have one, or you may find yourself diagnosed later in life as being on the spectrum, which happens to a lot of people. You should know something more about it than it’s the worst thing that can happen to you. You need to know that there’s so many interesting, exciting, challenging and things that you can appreciate about autism.

And again, it’s so hard to talk about without stressing the fact that there are challenges and there are very difficult days, but there is that with any child. When you have a child, you’re in there for better or for worse, even more so than a marriage. So you’re going to go get much further by accepting your child, whether they’re good at math or not good at math; whether they’re good at social skills or they’re going to be in diapers their entire life. These are things that you have work around and fit into your life, and accept that they’ve become part of your life. What are you going to do to make your child as happy as they possibly can be? What life skills can you teach them to be independent?

Sharon daVanport: Right. How did you come up with the name Rethinking Autism? I like that: Rethinking Autism.com.

Dana Commandatore: There’s a lot of different names that I came up with,a and they were really long and going through an entire…I sat for a week just writing things out. I still think I have the pad somewhere, all the different names I came up with. “Another Side of Autism” was one of them. I think my husband and I just decided that that made the most sense. We want to make people rethink. “Changing Minds” was another one that we wanted to do. We just wanted people to look at it and readdress or reeducate themselves on a subject that we know very little about, but everybody thinks they know a lot about because they saw a movie once.

Sharon daVanport: Right. [Chuckles] And I like the way you say to rethink autism and changing the autism conversation one video at a time. Tell us about how you got your ideas for the first videos. I know what your first videos were and I absolutely loved them when I came across them: “What? What’s this on my page? Why are these people posting on my page? Oh, my gosh!”

Tricia Kenney: I almost fell out of my chair when I saw those. I’m like: “Is that okay?”

[Laughter]

Dana Commandatore: I will be the first to admit that I get a lot of e-mails from people that love them or hate them.

Sharon daVanport: There’s no in-between with these, are there, Dana?

Dana Commandatore: Yeah. There is no in-between. I made some videos that were to counteract…It came about around Autism Awareness Month two years ago, when Jenny McCarthy was everywhere. Yes, I know Jenny McCarthy does not use sex to talk about autism. However, Jenny McCarthy did use sex to get where she was to talk about autism. [Chuckles] I refused to say: “If I looked like her” or “If anybody who had my viewpoint looked like her and was up there…” We needed a celebrity to talk about a different side, and to talk about a much more positive approach and give people more hope.

Jenny was trying to give people hope, in a sense. She was saying she’s cured her child and gone through all this, but I don’t believe you cure autism. You can have incredible advancements and improvements in your child’s behavior and what happens, but there is no curing and you either weren’t autistic to begin with if you were cured, or you’re not really telling the truth. I have no idea what’s going on with her son. I don’t pretend to. That’s between her and her son. But there is a message getting out there that you can cure autism. You could change a diet, you could do this, and she was telling her story.

And I thought that was not representative of what was happening to families who were really struggling and were trying diets and trying these things and getting no help. So I enlisted a very good friend of mine, Leanne Tweeden. She looked fantastic.

Sharon daVanport: Yeah, she does. [Laughter]

Dana Commandatore: She’s an absolutely beautiful woman inside and out, snd she did this for the cause, and turned a lot of heads and got a lot of people either interested or disgusted. And when you do that, you know you’re doing something right. When they’re really angry with you or really love you, you know you’re touching a nerve.

So that’s how I started. I just got an e-mail two days ago talking about how sick I am and how my child should be taken away from me.

Tricia Kenney: Wow.

Dana Commandatore: Yeah. So [they?] start the video.

Sharon daVanport: Now, we want to make sure we’re telling everybody, this isn’t porn or anything.

Dana Commandatore: No.

Sharon daVanport: We want people to understand that it’s nothing that you haven’t seen on a Victoria’s Secret commercial on TV that your kids don’t sit and watch.

Dana Commandatore: Exactly.

Sharon daVanport: I’m not saying I’m promoting and saying that your kids should watch this.

[Laughter]

It’s not for children. They wouldn’t understand it, yeah.

Dana Commandatore: I have a warning on my website. The first thing it says is: “These videos are not for children.”

Sharon daVanport: Leanne’s a beautiful woman who is getting a message. Go to RethinkingAutism.com and you’ll see these videos. I think they make a good point. I was shocked at first, but not disgusted, and I absolutely love them. I think they’re awesome.

Tricia Kenney: [They’re also pretty?] funny.

Dana Commandatore: You have to go into it with a sense of humor. I’m not saying that autism is funny, but if you’re honest, there are certain things that are funny and only people on the spectrum and parents of people on the spectrum can joke about certain things or do certain things. Not that this is making light of anything like that. It’s just trying to shock people and get their attention, and then try to give information that I think is important.

Tricia Kenney: What I was going to say is, when I first showed those videos to my boyfriend, he’s watching it and he’s like: “I don’t get it.” And I’m like: “What?”

[Laughter]

He’s like: “What does that have to do with autism?” I’m like: “Oh, you didn’t see the words.”

[Laughter]

Sharon daVanport: He was watching Leanne, but not the words.

Dana Commandatore: I’m hoping that people watch them over and over again and then all the sudden they realize: “Oh, wait a minute!”

Sharon daVanport: “There are words there!”

[Laughter]

Dana Commandatore: Some of the people that have contacted me, they’re like: “I don’t know how I stumbled across your website. But I love Leanne and have an autistic kid, so thanks.” It’s like: “I know how you stumbled across it.”

[Laughter]

Sharon daVanport: Mike is over in the chat room, and I like a point that he made when we were talking about Rethinking Autism. He said: “You don’t rethink it once and be done with it.” So in other words, tense: “Rethinking Autism.”

Dana Commandatore: Isn’t he good? [Laughter]

Sharon daVanport: He is, yeah. Very good, Mike, very good.

Dana Commandatore: Yeah. He doesn’t get enough credit for all the work that he does. Mike is my editor; he’s keeps me going. He’s such a creative, intelligent and fun person to go on this journey with. He’s just fantastic, and he’s been a huge part of me getting this done. I can’t do anything. I just can find the people that can do it, and Michael is one of those people.

Tricia Kenney: Very good.

Sharon daVanport: Yeah.

Tricia Kenney: So then how does this lean into your following video—the last one that you did?

Dana Commandatore: Because you’re [old?] now, right?

Dana Commandatore: Yes. I did a video called “Autistics Speak” and it came out around the same time as that Autism Speaks video. I forget even the name of it.

Tricia Kenney: I think it’s “I Am Autism.”

Dana Commandatore: “I Am Autism,” that was the one. But I had no idea they were making that, and they just happened to come out around the same time. I made this video. I decided that I would step it up a notch and get some more people involved, and I really wanted to bring autistic adults into the video. My whole plan is to slowly interest the general public and other people who are involved in autism, slowly get their attention.

And I started by using Leanne, and then I moved on and I kept using Leanne. I wanted to incorporate some autistic adults, and I wanted to make something like a mission statement video, where I had important key concepts that people can start to understand. I could introduce the term “neurodiversity” to people who have no idea what I’m talking about.

I got some incredible, incredible talent and friends of mine to help. My husband Michael was in the video, Bill Whittle, Armie Hammer, Elizabeth Chambers, Laura Orrico, Max Martini. These are all people that gave up their time to help get this message out there. And I wanted to mix in autistic adults, but every video I make, I don’t make any money. I don’t accept donations. It’s pure advocacy that I do. There’s enough great groups out there that are trying to raise money. I’m trying to change people’s mindset, so that when they come to donate to autism, they think about who they donate to. Hopefully, they’ll give to a charity that I feel is doing much more positive work, instead of someone who’s trying to eradicate autism from the planet.

So since I didn’t have any money, and from a production standpoint it was very difficult to get autistic people in Los Angeles that knew me, that trusted me, I came up with a creative workaround, where I used voiceovers. That was easy. People could send me their files throughout the country, and that’s what I did. So I have voiceovers from autistic people in the second video, where they give key concepts like: “Society should be more concerned about my quality of life instead of figuring out a way to stop me from being born,” things like that, and celebrating neurodiversity. I love that video.

Tricia Kenney: Yeah.

Dana Commandatore: I think it really does a great job of explaining to people, or introducing a more positive approach to autism.

Sharon daVanport: It really does. It opens up the conversation, exactly like what you say in the video. Opening up the conversation, to just talk about it and to talk about different viewpoints. I like Savannah’s voiceover where Savannah says in the video about: “Why shouldn’t I have a say in laws and
organizations that affect me?”

Dana Commandatore: And research, yep.

Sharon daVanport: Right, “and research that affect me?” That is so spot-on.

Dana Commandatore: It is. And Savannah’s voice was so unbelievably soothing and beautiful. Every time, I love listening to her speak. She really reaches people. My friends Boris and Deeji Zelkin did the music, which I think is absolutely gorgeous. They composed that just for this.

Tricia Kenney: Wow.

Dana Commandatore: Which really, really helps it.

Sharon daVanport: It really did.

Dana Commandatore: Yes. It really just gets you engaged. It’s a difficult thing to do, because I wanted this to be serious and get people to listen to it, but I didn’t want it to be sad. I think it did a great job of not doing that. But it is very emotional. Almost every time when I sit down and I listen to the whole thing, I get very emotional, to this day.

Sharon daVanport: I do, too. No matter how many times I’ve watched it, I cannot watch it without getting that lump in my throat. Something about it: I don’t know if it’s just everything together, the music, the voiceovers of autistic individuals. It’s so powerful.

Tricia Kenney: Right. It is powerful, and it also is a reminder. Every time we watch that, every time we hear it, it’s a reminder of where we need to go, of what we need to do. Every day we read stories to the contrary of that, and it reinforces that when you hear it again. We have a lot of work to do. There’s a lot of people who still don’t get it, and a lot of abuse is still being done.

Sharon daVanport: That’s okay, Trish, because Dana, she’s still on the job, aren’t you, Dana?

Dana Commandatore: Oh, I am not stopping. Jenny McCarthy made a point to say she was going to spend the rest of her life talking about autism to prevent it and stop it and do whatever, and I’m going to do the opposite. I haven’t heard much from her lately, thank goodness. [Chuckling] I am just going to keep going and going and going and going. I’m going to try to reach everybody I possibly can with this message.

I just think it’s so incredibly important, and it affects my son’s life. It’s for selfish reasons and for other reasons. I don’t want him to live in a world where people are afraid of him, don’t get him or understand him, and therefore, that closes opportunities and things in life for him as an adult. I don’t know if he’ll ever be able to hold a full-time job and go out to work every day, but there might be something that he could do from his own home, and if companies don’t start figuring out a way to actively recruit people like this with telecommuting. It can open up a whole new world for people if they have revenue streams and don’t have to rely on Disability [income] and stuff. Some of the most intelligent people I know are on Disability because they can’t work, and I find that very sad.

Sharon daVanport: Right.

Tricia Kenney: Yeah, it is. It is. And there are people out there working towards that goal, and very innovative companies out there right now. I’m so grateful for them, and I’m so grateful for you. As autistic people, most of us don’t have the knowledge, the equipment, the connections to produce something like what you’re doing. So even though we’re out there trying to talk to people, and trying to inform them and give them an idea of what our lives are like and little tips that we could give them, things like that, we don’t really have that media, that way of getting a message out there in such a professional manner. We don’t have PSA spots on NBC and all of that. It’s the people with the money that are really taking over the whole media stream, as far as autism is concerned.

Sharon daVanport: They are.

Tricia Kenney: I really was so thrilled when I saw what you were doing. I’m like: “That’s a real video!” It’s not something that was done off somebody’s webcam.

Dana Commandatore: I want to make it pretty clear that I think there are a lot of people out there like yourselves and there’s other people who are doing incredible work. But like you said, they don’t have the money or the connections. But if I can, through the people that I know and the business that I’m in, get this message out there, then people will start to find…There’s so many great videos on YouTube that autistic people have done, but nobody’s watching them. They don’t know where to go; they don’t know what to do. It’s stuck within the community right now, and I’m trying to pull it out of that, into the mainstream media. Eventually, I’m hoping someday somebody’ll put my spot on TV, one of my spots.

Sharon daVanport: Oh, that would be awesome. Wouldn’t that be great, Dana? That would be wonderful.

Dana Commandatore: Yeah, it’s going to happen. It’s really just a matter of time. I’m not trying to put myself as the face of anything. I’m never in a video; I don’t really want to do that, because it’s not about me. I know that people say that and it really is about them, and yeah, maybe part of my ego, it is about me. But I’m trying to get other people involved. That’s why I use different people in my videos.

I did a small video in between where I also introduced some faces of autistic adults to the mainstream, tried to get people to watch it because Jenny McCarthy and Larry King talked about: What happens to autistic kids when they grow up? and Jenny McCarthy had no idea. She didn’t know any.

Tricia Kenney: Yeah.

Sharon daVanport: I remember that, yeah.

Dana Commandatore: So I put this video together, where I was like: “Well, here’s some for you to meet. And there’s a whole bunch out there and they’re all pretty incredible, diverse people. And maybe you should get to know them before we start claiming to be experts on a subject that people really don’t know that much about.”

Sharon daVanport: Right.

Tricia Kenney: Right.

Dana Commandatore: So this brings me to my next video, which I just shot yesterday. I’m still walking on Cloud 9; I’m over the moon about it. It was unbelievable. I’m not gonna tell you a lot about the actual video because I want it to be a surprise when it comes out. I’m hoping I’ll have it ready in about a month or so. This is taking it to a whole new level. I found a director, Michael Worth, who made a movie called God’s Ears. He wrote, directed and starred in this film about an autistic boxer who tries to start a relationship with an exotic dancer. He’s an autistic boxer, but it’s not like he’s out boxing every night. He works in a boxing gym and loves boxing. It’s not a Rocky-type movie, in that sense.

[Laughter]

Sharon daVanport: Right.

Dana Commandatore: Michael did an incredible job acting, writing and directing the story. It was this little indie film. You can look at it; go to godsears.com or you can look it up on Hulu and you can actually watch the whole movie now. I fell in love with the movie; I was asked to review it for Big Hollywood, and I fell in love with it. I contacted Michael and I spoke with him, and when it came time to do this next video, I decided I was going to ask Michael to direct it. He graciously accepted, and then we just started the ball rolling. We got some incredible people involved. This is the first time where I was actually going to have a group of people all talking at the same time, and I needed real sound people, and people donated their time for that.

It was just absolutely incredible, and I am so happy that I befriended an actress who is autistic—her name is Tammy Kline—who is the focal star of this spot, and she is an incredible woman: beautiful inside and out, and really just brought it yesterday, and so professional, so engaging, and I can’t wait to introduce her to all of you through this video.

Tricia Kenney: Oh. So you’re thinking about a month, then we’ll be able to see it?

Dana Commandatore: Yeah.

Tricia Kenney: Can we see it today? [Laughter]

Dana Commandatore: I know it. I want to see it today, too. I have all the clips on my computer and I just keep looking at them and going back and forth. I’ll be working with a director and an editor to really put this together, and creating the right music just to really get this point across. The whole point of this video—this is where I need the help of the autism community—is, this is where I’m really trying to provide a service for parents of newly-diagnosed children and people who are struggling. I’m creating a page on Rethinking Autism.com called Our Voice, and people are writing in to me and telling me things that they wish they could’ve told their parents as a child, or things that they want parents to know about what helped them or what didn’t help them, so that I’m actually starting to help people.

Tricia Kenney: Right.

Dana Commandatore: And give them much more of something to do and something to learn from.

Tricia Kenney: Right. And that may not apply to every child or every family or every situation, but it might. It might be just what you needed to hear for your situation. I was talking with somebody yesterday about that, and I mentioned one of the things that was huge to me was getting alone time. My mother just absolutely would never leave us alone. [Laughter] I was around my siblings and my family 24/7. There was never a moment alone, and never a quiet time, and that made me nuts all through up until I left. [Laughter]

Dana Commandatore: Yes. Yeah.

Tricia Kenney: I think sometimes we do need to let our children just go in their room and veg for a while.

Dana Commandatore: Yeah. Let them just be themselves; let them stand as much as they want, or do that.

Sharon daVanport: We do need that down time. We really do. Autistics need that. Everyone does, but when it comes to certain sensory things that we deal with, down time is awesome.

Dana Commandatore: But that is the information that parents need to hear. They need to know. You can go through all this technical stuff and all the research and all the behavior analysis. Go through all that, but really, in the end, all the sudden you realize: You know what? I can let my child go in his room and line up his toys for an hour every day. I can do that. It’s okay. And it actually helps him.

Some of the stuff, I don’t want to share it yet because I want it to be on the website. Some of the stuff that people have sent in to me, it’s just so beautiful. And their letters! One gentleman wrote a letter to his parents about how much he loved them and how much they didn’t think that they were even getting through to him. But to know that your child is there listening to you. Even if they can’t touch you, even if it hurts when you touch them, they still love you. And parents need to hear that, so they can [unknown].

Sharon daVanport: Now, Dana, is this recent call for autistic adults to contact you that you did, is this a tie-in with the video? Are you going to post their comments and what they have to say?

Dana Commandatore: Yeah.

Sharon daVanport: Okay. And where can they e-mail you, for those who are listening?

Dana Commandatore: rethinkingautism AT gmail DOT com. But I’m getting some e-mails now; I would love to have tons of them, just to put them up there and get people to give them somewhere to go, to give them some valuable information that they can’t get anywhere else. There’s a tie-in with the video; it’s what the “Call to Action” is for the video.

Sharon daVanport: Okay. That’s awesome.

Tricia Kenney: And I think autistic adults, even teenagers, young adults, older adults, such a valuable tool to the autism community and it’s just not being utilized.

Dana Commandatore: That’s the whole point of this video, is to realize that there is an entire community out there that you can learn from, that will talk to you, whether it’s through a computer or through their voice or through all these different forms of communication that we have now available. They can give you some answers to questions that you’re dying to ask, but you don’t know where to go.

Tricia Kenney: And things you didn’t know you wanted to ask.

Dana Commandatore: Right, exactly.

Tricia Kenney: Things you just haven’t thought of previously, because we get so busy with life and the tasks at hand every single day, especially when you have children who require a lot of care, or a lot of attention. It gets a little overwhelming, and you don’t even think about that stuff after a while.

Dana Commandatore: Yeah. And I hope you guys will both write in to me, too.
[Laughter]

Tricia Kenney: Yeah.

Sharon daVanport: I’ve already got something together for you, Dana. I’ve just had a really crazy busy week last week. You know back when we were playing e-mail tag last week, Dana.

Dana Commandatore: I know; I know.

Sharon daVanport: It was crazy.

Dana Commandatore: We’ve got time; we’ve got time.

Tricia Kenney: My kids are starting school again, so I’ll be able to actually get back into the swing of things, too. I’ll be sending you something.

Sharon daVanport: Dana, did you say it was going to be within the next month? You hope in January sometime, or February?

Dana Commandatore: I’m hoping by the end of January, beginning of February, it’ll be available.

Sharon daVanport: Oh, this is going to be so awesome. I’m really looking forward to this, Dana.

Dana Commandatore: Yeah, I am too.

Sharon daVanport: I’m glad you came on this show and you were able to tell everyone about it. We’re just going to really network this like crazy, so people will know to not only contact you, but what they can look forward to in your next video.

Dana Commandatore: Thank you so much.

Sharon daVanport: Awesome. Is there anything, Dana, that you would like to…? We always do this for all our guests. We like to end the show with them being able to share anything they want with our listeners. So from Dana to our AWN listeners, what would you like to share with them? Anything we didn’t cover? Anything at all?

Dana Commandatore: I don’t think so. It’s the end of the year; it’s the holiday time, and I feel incredibly thankful and grateful for the year that I’ve had with my son. It’s had so many challenges. I just want people out there to just take a few minutes and just be grateful for what they have at the end of this year.

Sharon daVanport: Right.

Dana Commandatore: And if they need help, I hope they can find the people that can help them. I just want to say: “Happy holidays.”

Sharon daVanport: Wow. Thank you so much, Dana. Thank you so much for coming on AWN radio and sharing this great news, this latest news, with all of us. You have a great holiday, okay?

Dana Commandatore: You too, ladies. I’ll speak with you soon. I always appreciate you giving me time on air, so thank you very much.

Sharon daVanport: Okay. Thank you, Dana.

Tricia Kenney: Thank you so much, Dana. Take care.

Dana Commandatore: Take care.

Tricia Kenney: Bye-bye.

Sharon daVanport: Bye-bye.

[Dana hangs up.]

Sharon daVanport: Okay, what a great show, Trish. It was really awesome to have Dana back again, and I’m excited about the video coming out.

Tricia Kenney: Umhm. I am, too. It’ll be a long month waiting for that. [Laughter]

Sharon daVanport: I know, right? But I want to thank everybody in the chat room and all of our listeners on the switchboard, and thank all of you who come in and listen afterwards on the podcast. Just remember, December is our last month for Autism Women’s Network to be in the Pepsi Challenge contest. We are trying to win a grant, everyone. We’re trying to win a grant so we can host workshops across the United States. We’ve been fortunate that though we have placed well within the top 20 the last couple months, we haven’t made it into the top ten, we got to number 16 last month.

We did so good in the national contest. I was so excited. But we just want to remind everyone that there’s still voting going on, so make sure that you get over to our webpage. And get over there and throw us your daily vote, please, because Pepsi, they were just genius in coming up with this, where they’re getting everyone to say: “Pepsi” every single day of their lives while they’re in this contest. [Laughter] You have to vote daily in order for your vote to count for us. If you vote yesterday or the day before and you don’t vote today, we drop in the ranks. So we’re hoping to finish out the last week and a half with everyone being able to get together and help network, post our link, ask people to vote for us. This is it.

But we are going to host the workshops whether or not we get the grant. The Pepsi contest opened up a lot of doors for AWN. We’ve been contacted by now more than a dozen autism organizations throughout the United States, inviting us to host workshops in their city, so it’s not going to be a total loss.

[Laughter]

We learned a lot, believe me. We learned a lot from this Pepsi contest. So, with that said, I think we’re done, Trish. Anything else that I missed, do you think?

Tricia Kenney: No, I think we covered it all. So thank you so much to Dana for being here and of course, for Michael for being in the chat room and helping us along with that. Take care, everyone, and we’ll see you on Thursday.

Sharon daVanport: All right. Bye now.

Tricia Kenney: Bye-bye.

[End]

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