Other People's Words

Autism Women’s Network Radio Day

Posted in Uncategorized by Tera on June 9, 2010

Here’s a transcript of the Autism Women’s Network radio show on April 30, 2010. Several board members called in and were interviewed about everything from Interagency Autism Coordinating Coomittee meeting proceedings to web development at the Autism Women’s Network to “autism-friendly” events they coordinated and webinars they participated in.


Sharon daVanport: Hello, everyone, and welcome to AWN Radio. I am your host, Sharon daVanport, and today is Friday, April 30, the last day of Autism Awareness Month. Here on AWN Radio, we are bringing to you our month in review. As many of you know, we did take a few weeks off from our radio broadcast, because April ended up being a really busy time for all of us here at AWN. However, we’re ready to get back in the swing of things today, and joining me today is co-host Tricia Kenney. How are you doing today, Tricia?

Tricia Kenney: Hey, there, Sharon. I am doing really well. How are you?

Sharon daVanport: Pretty good. I had a good night’s sleep, so I’m ready to go. [Laughter]

Tricia Kenney: I know you had storms out there last night.

Sharon daVanport: Yeah, but I actually sleep better during storms and the rain. That’s not good, though, because of tornado warnings. I had to go to the basement a couple times. Once I fall asleep, I sleep so soundly I would sleep through a tornado, and that would not be good. But it’s true—I would. [Laughter]

Tricia Kenney: Right. I know; I do the same thing.

Sharon daVanport: Excuse me, everyone, if my voice is just kind of rattly. I’ve got allergies going on here and I don’t mean to be all gross and cough into the phone, so I’ll try not to do that. [Laughter]

We’ve got a really exciting show today. In just a few minutes, we’re going to be going live to Washington D.C. for an update from our D.C. correspondent and our AWN liason, Lindsey Nebeker. Lindsey’s also our AWN editorial director for our relationship and sexuality publications, and she’s in attendance at the IACC meeting today.

They’re breaking at about 15 past the hour, so she said she’s gonna call in just as soon as that occurs, and she’s going to bring us up to speed with the morning updates. I’ve heard that we’re going to be hearing a very exciting IACC update, which was announced during their meeting this morning. I don’t wanna give it away—people are already starting to blog about it and tweet about it, so I don’t wanna give it away for those who haven’t heard and are listening live—but I’m really excited about that. What do you think about that, Tricia?

Tricia Kenney: I’m pretty anxious to hear about it. If there’s an IACC meeting, they get a lot done, and they cover a lot of topics, so I’m glad to hear that Lindsey is involved with it. I’m anxious to hear how she’s enjoying it, or if she’s enjoying it. Hopefully, she is.


Sharon daVanport: She is. She’s actually going to be giving a public comment herself when they go back this afternoon. I think it’s at 1:30 they start the public comments. I believe that’s something she’s going to actually be doing today, too, so I’ll be excited to hear afterwards what all she had to say.

We were able to get a few of our board directors, who weren’t too tied up today. Everybody’s so busy, has so much going on, but it looks like we’re gonna have Lori Berkowitz, our director of technical services and web development, get us up to speed on the techie guru/geeky stuff over at AWN, which I’m really excited about.

And of course Sandy Yim, our director in Pennsylvania here in the U.S. and soon to be appointed our community outreach coordinator for events. She’s really fabulous, and she’s really creative in putting together a fabulous event in Pennsylvania this past week. I wish I really understood how to do things like that. She’s quite the go-getter when it comes to that. Did you hear about how well it went?

Tricia Kenney: Yeah. Before it even happened, I was like: “Wow! She’s putting together an awesome event.” I know it was in the works for several months. It was just really wonderful to hear that the community was so behind her, and that people came out and were enjoying themselves and they wanna do it again and again and again.

Sharon daVanport: I know. That’s what I can’t wait to hear about from Sandy. It was an autism-friendly night out, and I don’t want to get too much into it; I want her to explain it. But it looks like they want it to be an ongoing, continuing thing—to recognize and have an autism-friendly night out. That’s all I’m gonna say. I’m gonna let Sandy tell about everything else.

Tricia Kenney: This is the type of thing that you want to get in all of our communities, and to keep spreading out as AWN grows and has more people in more states. These are things that we really want to promote. We do want to give out community support.

Sharon daVanport: Right. And I think that it’s really good, too, because every step along the way, Sandy really zeroed in on making sure that it was completely autism-friendly, when it came down to the sensory differences that we on the spectrum have. I’m really looking forward to seeing how that’s gonna play out.

Before Lindsey calls in, I wanna talk a little bit about some of our upcoming guests. We’re gonna have Taylor Morris on. She’s a young girl with Asperger Syndrome, and she’s just very inspiring. If anybody wants to go to her website, she’s just an inspiring young girl. She makes videos over on YouTube and talks about hope for autism and Asperger’s. She’s just had an overwhelming response to her YouTube videos. She was recently on the Coffee Klatch, the chat over on Twitter. Did you get to follow that?

Tricia Kenney: No. I always miss it. It’s on early in the morning, and I’m sleeping by that point. [Laughter]

Sharon daVanport: I should’ve told you; hers was an evening one. Every now and then, they’ll have an evening one. You might’ve been able to catch that one, then. Hopefully, it’s gonna be next week, but if not, we’re gonna get her squeezed in this weekend. Her mother, Robin, is going to be getting back to me and I just received an e-mail this morning. We’re hoping to either get her this weekend or next week. We’ve been working on it for a while, to try to coordinate all of our schedules. Everyone is just so busy. It’s a busy time, it’s a busy world with everything going on. But that’s okay.

I keep checking the switchboard; I’m just so excited for [Lindsey] but we still have seven minutes. I think I’m gonna bring Lori on, and she can just start chatting a little bit about the geeky web stuff. We can talk about that until Lindsey [comes in].

Also, too, before I bring Lori on, I want everyone who’s listening to know that the following week, we’re gonna get John Elder Robison scheduled. He’s gonna be coming on to explain to everyone why he made his decision to sit on one of the boards over at Autism Speaks and talk a little bit about what he’s been doing so far, and what he sees for the future over there with his involvement. He’s gotten quite a mixed review on his decision.

Tricia Kenney: There’s been a bit of controversy about it. I’m just like: “Boy, I’m glad I’m not him right now!” [Laughter]

Sharon daVanport: John looks at it differently. When I said that to him—I’m like: “How do you deal with all that?”—he said that overall, the response has been positive. I think John is pretty much a grounded, well-rounded person, and has been through the school of hard knocks long enough to where when he’s confronted with controversy I don’t think it really affects him so much. He takes it into consideration; he understands why there’s controversy; he gets it. But he doesn’t let it affect him going forward and do what he feels he needs to do. I respect that about John, I do.

When people said: “You mean you would’ve done it if Autism Speaks had come to you?” I’ve always said: “I didn’t say that.” I’m saying I support John’s decision. It’s gonna have to happen to somebody sometime. Lori, are you there?

Lori Berkowitz: Yeah.

Sharon daVanport: Lori’s our director of technical services and web development. If anyone has been over to the AWN forums recently, you will notice that we’re getting ready to have AWN e-mentoring. We’re really excited about that; Katharine Annear is going to be coming on the radio soon and talking a little bit about that. Lori, can you tell us some of the updates that we’re gonna be looking forward to over at AWN?

Lori Berkowitz: Katharine’s probably got more information about the e-mentoring, but it would be a separate section with its own forum for people to take part in that. I think we’re also gonna do some locational stuff, so that we can find out where everybody is, if they want, and get everybody up on that.

Sharon daVanport: Right. We’ve had some requests, haven’t we, through our contact sheets over on our website—people requesting that they’d like to know where different people are, or they’d like to enter in their location, so other people know where they are. I think we’re gonna look into it being an optional thing. Is that correct, Lori, in case some people don’t wanna participate?

Lori Berkowitz: Right.

Sharon daVanport: And I’m sure some people’ll be like: “Well, you know what? This is the internet, and I’m not quite sure I want everybody to know.” [Laughter] But a lot of people are actually requesting that, and Lori, how would that work? Would it go through our IP address if we click it to do so?

Lori Berkowitz: I’m gonna do it with Google Maps, so people will pick their location on a map in their profile. It’ll be a mini-map that shows little Google dots for where everybody is.

Sharon daVanport: Okay. That’s pretty neat. I saw the example that you sent me, the link. I really liked that; it looked neat. We’re gonna be working on a links page, where we’re gonna be linking different websites to our website. Is that correct?

Lori Berkowitz: Yeah; some kind of directory so we can have a resource.

Sharon daVanport: Right. Because as many of you know, AWN got our website up and running, so we can at least our forum and get interactive and introduce ourselves to the autism community. We have a lot of things that we’re eventually going to be bringing. I know something that Lori’s also been working on, and that’s going to be s photo page. What are we gonna actually call that, Lori? We’re gonna have photos of different events and things like that.

Lori Berkowitz: Just “photo gallery.”

Sharon daVanport: Photo gallery, that’s it. [Laughter] So that’ll be nice; that’ll be exciting, won’t it, Tricia, to have a photo gallery over there?

Tricia Kenney: It will. Lori, are we gonna be able to do a video gallery at some point?

Lori Berkowitz: Yeah, sure. At some point we could do almost anything. [Laughter]

Sharon daVanport: We have to realize, too: Lori has her own business and Lori is on the board of directors here at AWN, and she does all of this web development for us and technical services and hosts us and everything. Lori is a volunteer for AWN, and as soon as we start getting our different funding and grants, of course, we’re going to be able to compensate for different things and have more in the way of technical services and web development with Lori. But she’s running a full-time job at her business and contributing to AWN, so we just wanna say thank you for that, Lori. Thanks for all that you do.

Tricia Kenney: Thank you. Without you, we wouldn’t be where we are already.

Sharon daVanport: I know. We definitely wouldn’t, Lori. You are the guts of this, you really are. [Laughter] So, why don’t you tell everybody about where they can contact you for your web services?

Lori Berkowitz: Oh, sure. My business is called BeeDragon Web Services.

Sharon daVanport: Very good. Didn’t you have a presentation or something that you gave recently? I know I was so excited about that. Didn’t you do something with a way of presenting on some geek stuff?

Lori Berkowitz: Oh, yeah, yeah. It was a Word presentation which is actually on the web. There’s gonna be a version with audio. It’s a Slideshare thing. I’ll send that link, when it’s up there.

Sharon daVanport: Oh, yeah. Let us know when you get that, so we can go and look at it. Was it a training video? Was it a training class that you did?

Lori Berkowitz: No, it was a presentation at a WordPress meetup. (WordPress is some software that I use for a lot of websites. Not for our website, but it’s just awesome open source software).

Sharon daVanport: Okay, very nice. Lori, thank you for joining us this morning. You gonna stay on and listen to the rest of the show? We’ll put you back in queue. [Laughter] Okay, well, thank you, Lori. We’ll talk to you in a little bit.

Lori Berkowitz: All right.

[Lori hangs up]

Sharon daVanport: Lori’s just awesome, isn’t she, Tricia? The huge—the whole website.

Tricia Kenney: Yeah. I can thank her a million times over for doing all that she’s done. I don’t know if everybody’s aware of this or not, but our board members, everybody that’s with us so far is autistic.

Sharon daVanport: That’s right.

Tricia Kenney: A thing that we wanted to do when we started this organization was to have an autistic board. Everybody that you’re going to be talking with today is autistic, and that’s how they came to be with us, besides their special skill that they can contribute. I think it’s really important for people to know that a big part of why we did that is because we wanted to make sure that we were representing the autism community.

Sharon daVanport: That’s right. Very nice. I know that when it comes to events, there were so many things that went on during the month of April. Did they have anything in Missouri, locally, that you were aware of, Tricia, that you even wanted to participate in or that you heard of that was going on?

Tricia Kenney: Nothing big; not really, unfortunately. [Laughter] But we’ve been working on that through our organization for next year. I’ve got quite a few things sitting in my head that I wanna get worked out and have some events here for next spring and through the summer, just because there just isn’t that much going on here as far as autism is concerned. I would really like to change that.

Sharon daVanport: Right. And I got to go to Washington D.C. earlier in the month. I was really excited about that.

Tricia Kenney: That’s huge.

Sharon daVanport: Yeah, and I got to meet Lindsey, actually. Lindsey Nebeker’s going to be calling in in just a few minutes. It’s 11:18 now, so it’s 12:18 there. She should be calling in pretty soon. As soon as she gets to a quiet place and can call into the switchboard, she said she would when they break.

But yeah, it was really exciting. AWN received an invitation from the White House to attend a special meeting on World Autism Awareness Day. It was just so exciting. I wish I could’ve had the reality of it all sink in while I was there, but I tend to have these delayed responses and reactions to things. It didn’t really hit me until afterwards. I was home for about a week, and it finally hit me: “Oh, my gosh! I was at the White House. I went to a meeting at the White House.” [Laughter]

It happened so fast. I look back on my notes that I took—I’ve been working on the article to get posted to update everyone, so I don’t wanna give a lot away today. But I did wanna say about being in Washington, it was a wonderful experience. I believe that the panel who presented and spoke to all of us who were in attendance, there were just over 20, 25 people there. There were three self-advocates: me, Ari Ne’eman and Scott Robertson. They both are with ASAN. Ari’s the founder and president of ASAN and Scott is the vice-president, and then myself, with AWN.

The administration made a special point in acknowledging that at the very beginning of the meeting, and even said that the administration from here on out is dedicated to continuing moving forward within the autism community as something they will not even think about going forward with unless self-advocates are included in that. So I thought that was huge, that they were ready to announce that and say they’re not moving forward without self-advocates; that they know that there’s a place for that now.

Tricia Kenney: Right. It’s been too long that everybody’s been speaking for us, when there are plenty of us out there who want to give our side and tell what our reality is like. How wonderful that we’re finally getting that opportunity.

Sharon daVanport: Right. And you know, the administration wanted to make sure [of] any concerns about that, because a lot of it’s really controversial. People will say that people who are self-advocates because we’re verbal and some people are not verbal on the spectrum, they take issue with that. However, the administration was really good about saying they have no intention of not continuing the same work they’ve done with parents who are in a position to where they advocate for their children. They still plan to move forward with that, but they just see that there’s a necessity with including self-advocates.

Tricia Kenney: There’s nothing saying that a non-verbal autistic adult can’t be in there as well.

Sharon daVanport: Exactly. Absolutely. That’s what AWN is working towards. I know that I’ve been in communication with a couple of self-advocates who are non-verbal and who communicate through augmentative communication devices. I’m trying to get them involved in AWN. We want to be well-rounded; we want to include everyone.

It is something where, logically speaking, those of us who are verbal will be the first ones out there, perhaps. But I think Carly Fleischmann over on Twitter, and how she gets on Twitter and she communicates through her computer. Up until she was an adolescent her family thought she couldn’t even speak. They didn’t even believe that she had that ability until she was put in front of a computer, and now they know that she understood everything that they had talked about this whole time.

Her dad even made a comment that he was mortified to think that they had talked about her in front of her, thinking she never understood when she was younger, and then they put her in front of a computer and gave her a way to communicate, and there you go. She’s whole, complete, just like anyone else. There’s a lot of myths to dispel, isn’t there, Tricia, when it comes to autism?

Tricia Kenney: Tons. Tons. Yeah. I think of my own son and how people treat him because of his verbal abilities. It’s just unreal. They seriously act like he’s a toddler or something, and talk to him as such. He’s a very smart kid. He understands everything; he’s got a huge reading vocabulary and types in his own stuff on the computer and everything. But because of his verbal abilities, people just judge from there and say: “Well, there’s very little going on inside his head.”

Sharon daVanport: Now, for those who don’t know, Tricia, you have twin boys, and they’re both on the spectrum. One is Asperger’s and one is non-verbal autistic, correct?

Tricia Kenney: Well, he’s not completely non-verbal, but he does really have issues with how much he expresses verbally. He’s come a long way; he talks a lot more now. But, yeah. For years and years he said very little except for maybe a little bit of echolalia. So people assume differences just within the two kids that I have, and it’s completely unnecessary.

Sharon daVanport: How do you deal with that as a parent? What are some of the challenges that you see as a parent when people attach assumptions to their abilities, especially since you have children at very different ends of the spectrum, when it comes to their verbal communication?

Tricia Kenney: Really, the only thing is their verbal communications. Other than that, they’re very much alike in what they do and their video game playing and all that stuff, and fighting with each other. [Laughter]

Sharon daVanport: Hasn’t one of your sons had a little bit more difficulty with learning how to use a toilet? That tends to be something that you hear a lot about, too, in the autism community: people are so frustrated with stuff. He’s had some huge leaps and bounds in that recently, too.

Tricia Kenney: He’s getting more into the swing of things.

Sharon daVanport: Good for him. [Laughter] Well, I think that’s wonderful, and that’s worth talking about.

Tricia Kenney: It’s something I understand. I hope people don’t assume that just because I’m autistic and I’m out here doing all this stuff that I don’t understand what’s going on with raising autistic children and some of the challenges that are there, because I live it. This is what our life is like. I go through the same thing. I completely can see where a lot of parents come from, because it’s our life, too.

Thankfully, I am in contact with enough autistic adults that it’s given me a better life and a better way to understand my own children. When you’re just in it by yourself, it’s hard to see.

Sharon daVanport: Right. And I’m raising a child on the spectrum as well, so I get it from the parental viewpoint and the experience of being a parent. I think we all in the autism community have our own unique experiences. I’ve never met two families or two individuals on the spectrum who are exactly alike. I think that’s a big misnomer. A lot of people this autism is autism. You say it and it means the same thing, but it really doesn’t.

Tricia Kenney: Right. Yeah, it’s a brain processing thing, but your history, your life, your family, your situation, all of that contributes. Everybody has their own life, so everybody’s gonna have their own experience, everybody’s going to display accordingly. That’s why I don’t like those blanket treatments or anything like that, because it doesn’t even make sense to do things that way. Everybody has their own experiences that are coming out.

Sharon daVanport: And I guess that’s why, too…I’ve gotten a lot of flak for this, but I guess that’s why I’m able to speak out a little bit more assuredly for where I stand on John Elder Robison’s position of trying to reach out and say: “Okay. Let’s see what Autism Speaks has to offer here in the way of really including autistics.” He took a leap and he did it. It doesn’t mean that I support the way Autism Speaks has been, and especially their PR campaigns and how they file their money.

It doesn’t mean that, but it does mean I can say: “I get where John’s coming from and how he understands the autism experiences as being very unique and different to each person, each family. He thinks he can lend a good voice to that.” I always say: “Let’s just see what happens.”

It’s really hard when you’re trying to not be in the middle, because you really can’t be. You have to stand for something or you stand for nothing. And I do; if somebody really wanted to ask me some pretty point-blank questions, I’ll give you some answers.

But when it comes to really trying to understand the bigger picture, I get that, too. I just get where he’s coming from. Two people are just not gonna have the same autism experience, and I think that that’s mostly what John feels he can bring to it, and seeing where their research dollars are gonna go to. That’s where I’d like to see a change in every organization that accepts funds and grants for research. I’d like to see more go into the spectrum for individuals: for augmentative communication, education, community supports like training emergency personnel. I think that’s huge.

Tricia Kenney: Training emergency personnel, police departments.

Sharon daVanport: For autism awareness and understand how people relate in emergencies, yeah.

Tricia Kenney: Public transportation. There’s so many areas that really should be covered that people are at a disadvantage when they enter into these environments.

Sharon daVanport: Right. I’m trying to check the switchboard, but it’s flashing again. Lindsey’s running a few minutes behind.

Tricia Kenney: Yeah. I think maybe we should bring Sandy on and go forward with that, because we don’t know exactly when Lindsey is gonna be around.

Sharon daVanport: Okay. Can you go ahead and do that, since my thing is so possessed right now? It’s just flashing all over the place. I don’t know what’s going on. [Laughter]

Tricia Kenney: Hi, Sandy.

Sandy Yim: Hi.

Sharon daVanport: Hi, Sandy.

Tricia Kenney: You’re very quiet today.

Sandy Yim: Oh. Is that better?

Sharon daVanport: Hi, Sandy. Yeah, I can hear you a bit better. You’ve got such a very mild, soft voice. [Laughter] That’s good, though. How are you doing, Sandy? Are you rested up from the event the other day?

Sandy Yim: Yeah. It was draining, but it was good.

Sharon daVanport: Draining, right. I know. All the overstimulation of just being out in public can be draining, right?

Sandy Yim: I know.

Sharon daVanport: Right. So why don’t you tell everyone just what kind of event you had there in the Philly area in Pennsylvania? It was called “Autism-friendly Night Out,” is that correct?

Sandy Yim: Yeah. I think the first time I talked to you, Sharon, we talked a little bit about how sensory issues have always been a problem with me. I’ve always had a hard time going to restaurants or stores and things like that.

I guess after a while, I started to wonder if there was anything that stores or restaurants might do to make it any easier for us. I started to think maybe I could approach a shopping center about having a night where they would change their sensory environment: turn down the music, have things a little quieter, maybe learn a little bit about autism and encourage autistics to come out and to not be stressed out.

I was kind of worried about whether they would be open to this, and so I happened to know of this shopping center and I started out approaching the restaurants and it turned out that pretty much everybody in the shopping center wanted to take part. It ended up being 40 plus stores and restaurants, so it was really amazing.

Sharon daVanport: Wow.

Sandy Yim: Yeah. We ended up doing reduced light, but it turned out that most of them didn’t have harsh lights. They turned down their music, and actually most of the employees were really happy about that. They said that they actually hate the music in there anyway.


In stores where the odors were really strong, they said it was really hard for them to do anything about the odors—like candle stores. They just indicated that they would give a raffle prize. It was really nice of them; they really wanted to help.

The restaurants, they had gluten-free menus for families that do gluten-free. We encouraged outdoor dining. I’ve learned over the past year or two that certain restaurants where I can’t control the noise in there—Panera, I’ve noticed, it’s really loud in there, and I guess it echoes a lot. So I always eat outdoors. They really encouraged outdoor dining. The restaurants actually did giveaways. They actually had someone sitting out in the cold giving away chips and salsa. It was really, really nice.

Sharon daVanport: You guys had some weather issues. Wasn’t the wind just really strong? It was 39 degrees windchill or something in April. [Laughter]

Sandy Yim: I know. It was so nice of them. The girl was sitting out there till the end, giving away gluten-free chips. They did such nice things for people. They all made an effort to learn about what to expect and not to touch people, because they didn’t wanna upset anyone. They were really understanding of stimming, that people might flap, they might rock, they might make unexpected noises and that it wasn’t a big deal, that it could mean different things.

We also had miniature therapy horses. They made people so happy. It was really great seeing adults and children having so much fun. We also had special ed teachers from the local school district who came in. We had a quiet room, in case anyone had to just get away from the stores or the restaurants just to chill. They brought really nice crafts. They thought up their own projects that they use in their classrooms, and it turned out that the room wasn’t all that quiet. But it was only because the kids were just having so much fun in there.

Sharon daVanport: Aw. But that’s okay. It was their quiet room. [Laughter] It was quiet to them, considering all the hustle and bustle of the shopping center. It was their quiet room.

Sandy Yim: Yeah. It was a great chance for them to get away from shopping and all that. It was really very great to see everyone so happy. I did not see one single meltdown or anything.

Sharon daVanport: *Really?”

Tricia Kenney: Aw.

Sharon daVanport: See? Now that’s what it’s all about. That is testament right there that shows when people are like: “Can’t people control their meltdowns?” or “Can’t you control your child?” what about the environment? If the environment were conducive to the neurology of someone who’s autistic, absolutely these things can be controlled to a large extent. Just what Sandy said right there.

And then a lot of people ask: “Well, why did Autism Women’s Network decide to do something like this?” We were approached by a couple other organizations wanting to go in and do some things this year. There’ve been a couple that we decided that we wouldn’t participate in, because it wasn’t going to be that sensory-friendly, autism family-friendly environment that Sandy really worked out with the shopping center. You did so much. You even educated the shop owners and stuff, didn’t you?

Sandy Yim: Yeah. I went to every single store, and I talked to the managers about autism and what each store could do to be sensory-friendly. I taught each one a customized lesson. That was exactly what I wanted to accomplish.

Sharon daVanport: Sandy, we thank you so much. Autism Women’s Network, we’re so proud to be involved in this.

Tricia Kenney: Yeah. What a great job, and what a great outcome.

Sharon daVanport: Right. We’ll be putting up an article, too; we’re working on an article about the outcome and everything, but we wanted Sandy to be able to talk about it today, too, before we even put the article together. Sandy, can you give your e-mail address, where anyone can contact you? We’ve been asked where people can contact and start putting together these events in their area. AWN would be happy to help them with that.

Sandy Yim: Yeah. You can contact me at sandy AT autismwomensnetwork DOT org.

Sharon daVanport: Okay. Your blog is?:

Sandy Yim: Aspieteacher.com

Sharon daVanport: Okay. Sandy, we’re gonna keep you on the line so you can continue listening to the show, and we’re gonna bring Lindsey on. I see Lindsey’s on the switchboard, so she’s got the updates from the IACC. Was there anything else that you wanted to add, Sandy?

Sandy Yim: No, but than you so much for having me on. I really enjoyed doing the event.

Sharon daVanport: Well, thank you so much, Sandy. We really appreciate the event and just being able to participate in that. With you being the director of Pennsylvania, and now coordinating events and stuff, I can just see this going places with helping families in the autism community really be able to get out there and enjoy shopping and eating in restaurants. Thank you so much.

Sandy Yim: Thank you.

Sharon daVanport: All right. Talk to you in a little bit. Bye-bye.

Sandy Yim: All right. Bye.

[Sandy hangs up]

Sharon daVanport: Okay. Let’s bring on Lindsey now. It looks like Lindsey’s on the line; are you still there, Tricia? Well, I don’t hear Tricia, so—

Tricia Kenney: Oh, my gosh. My thing muted itself.

Sharon daVanport: Oh, did it mute itself? Okay.

Tricia Kenney: Oh, I think maybe you pushed that instead of Sandy’s.

Sharon daVanport: Uh-oh. [Laughter] I muted you. Well, my screen’s flashing; I don’t know what’s going on. Hello, Lindsey?

Lindsey Nebeker: Hello! Hi! How are y’all doing?

Sharon daVanport: Oh, we’re doing fine, Lindsey. How are you?

Lindsey Nebeker: I was just listening to the last couple minutes with Sandy talking about the event, and I just quickly wanted to applaud Sandy for having this idea to hold this little event. I really just wanna commend her for her efforts on that. I think it’s just a wonderful thing that she held. I’m looking forward to any future events that’ll come up after this.

Sharon daVanport: Oh, I am, too. I’m excited about it. How’s the IACC meeting going?

Lindsey Nebeker: We just breaked for a lunch period. Actually, we’re at the Ronald Regan Building and National Trade Center in Washington, D.C. It’s been very interesting this morning, so far. There’s been an introduction of people that are members of the committee, as well as a couple of presentations. Then after our break here, there’s going to be an opportunity for a few people in the public to give their comments, and then a few more presentations. It’s been very interesting so far. I’ve met and re-met some prominent people in the community, so it’s been a very interesting morning so far.

Sharon daVanport: And what about those updates? Wasn’t someone that we know appointed to the IACC today?

Lindsey Nebeker: I don’t know if you’ve checked with the website,, but it actually has been updated with the list of new members. One of them includes Ari Ne’eman; he got voted in. And we also have Marjorie Solomon, who’s a professor of psychology at the University of California; Denise Resnik, who’s a co-founder of Southwest Autism Research and Resource Center; Gerard Fischbach, the scientific director of the Simons Foundation, and Geraldine Dawson, who’s the chief science officer at Autism Speaks. Ari, we all know, is the president of ASAN.

Yeah, it’s exciting. I think before Ari, Stephen Shore was the only individual on the spectrum that was on the committee. Now there’s two members on the autism spectrum on the committee.

Sharon daVanport: All right.

Tricia Kenney: How big is the committee? How many members are on it?

Lindsey Nebeker: Well, I do not have the full list in my hand. It looks like at the table this morning about I wanna say at least maybe 20-25 people. I’m not exactly positive. Kathleen Sebelus was there this morning for maybe about an hour, just to have everyone introduce themselves to her and point out and reassure the IACC that they have the attention of Secretary Sebelius, as well as the President, and they wanna remain informed on the things that they do discuss.

Sharon daVanport: I got that impression at the meeting in Washington, D.C. when I was there.

Lindsey Nebeker: Oh, yeah? I didn’t know that.

Sharon daVanport: Yeah. I met her at the White House.

Lindsey Nebeker: Yeah, very elegant lady, and she also wanted to recognize and commend the person who held the White House meetings for the Autism Awareness Day. I think actually the person who—I forget his name, but you might’ve met him, too.

Sharon daVanport: Kareem Dale?

Lindsey Nebeker: I think it was, yeah.

Sharon daVanport: Yeah, he’s great.

Lindsey Nebeker: Yeah, he was there briefly, as well. It’s been very interesting so far. I’m not sure what else you want to know. There’s definitely been information exchanged.

Sharon daVanport: Well, that’s it. We just wanted you to give us an update, and that’s awesome. I’m just really excited to hear that they had announced Ari’s appointment there. It’s gonna be nice to have a couple of self-advocates on the IACC now. We’ll have to make for sure that you come back and let us know…we’re gonna have some radio shows in the next couple weeks, too. Maybe you can come on for a couple minutes and let us know what your comments were about today. You’d make those at 1:30? They begin open comments for the public at 1:30?

Lindsey Nebeker: They begin at 1:30, yes. [Laughter]

Sharon daVanport: Okay. Well, you don’t have much time to go and grab something to eat, so we won’t keep you any longer, Lindsey. But I’ll give you a call later today and we’ll chat.

Lindsey Nebeker: Okay. Well, that sounds wonderful.

Sharon daVanport: Okay. Talk to you this evening.

Lindsey Nebeker: Okay. Take care, everyone. Bye-bye.

Sharon daVanport: Bye-bye. Thanks.

Tricia Kenney: Bye-bye.k

[Lindsey hangs up]

Sharon daVanport: Very nice. Well, that’s exciting; that’s kind of what I wanted everybody to know. They already started announcing. I saw it going around, and I got a couple e-mails about the appointment. I guess it was announced 10:30 Eastern time this morning on the new appointments. But I thought it would be fun to have it as part of the show.

But I wanted to go ahead and remind everyone that if you have any questions you can put them up. I know that we’ve got some people over in the chat room. If they’ve got any questions or anything that they wanted to ask any of us before we ended the show today…Can you go ahead and take over for a minute, Tricia? I’m trying to fix something on my screen that just went down.


I’m sorry.

Tricia Kenney: Yeah, that’s really great that we’ve got another person on the IACC. I know we’d like to have several more to even it out. But like I said, at least we’re making progress in that direction, and it’s great that Lindsey is there today. I’d love to hear more about what was going on during the meeting, some of the stuff that they brought up. That’s always an interesting thing. I don’t know how many of you out there actually watch the IACC meetings when they occur, but they’re pretty interesting.

I wanted to ask Lindsey if Paula was at the meeting today. I would assume she was, since she’s at most of them.

Sharon daVanport: I’m sorry I had to do that, Tricia. It just booted me off the switchboard and then I got a message from Savannah—she’s our advocacy director—and she’s calling in. I went to go push it, because my screen’s bouncing. I’m like: “I have no idea why my screen is bouncing.” It just totally booted me off. I’m sorry about that, you guys.

You were talking about Paula. We wanted to make for sure to let everyone know that we wanted to give a shout-out to Paula Durbin-Wesby. She’s just been a tremendous voice for ASAN, and she goes to these meetings all the time. She’s just done tremendous work.

Tricia Kenney: I guess she’s not an official member then, or is she?

Sharon daVanport: No, she’s not. But she’s there at the meetings, she’s active at the IACC constantly. They’re giving her public comments and she’s just been a force to be reckoned with. She’s been just leading the way and really an outspoken advocate and just at these meetings continually. I know from my conversations with Ari, and speaking with him recently this past week, his appreciation, the appreciation that all of us in the autism community have for everything that Paula has been doing, through ASAN and being a part of IACC and all the meetings and stuff, that she’s just been fabulous. So I just wanna send a personal shout-out to Paula, too, from AWN.

Tricia Kenney: Yeah. Big time. Keep going, Paula, we really need you. She just works herself half to death. She’s just out there constantly and she really cares about the autism community to such a huge extent. I don’t even know how many hours a day she works.

Sharon daVanport: And if anybody wants to understand about the IACC, Paula was a recent guest just about six weeks ago here on our radio show. She goes in detail about the IACC meetings, and how you can give a comment and what you can do and what its purpose is. She just gave a complete rundown of it. So if anybody wants to know more about that, they can just click on it and listen to Paula explain it all.

Tricia Kenney: Right.

Sharon daVanport: I think Savannah’s on the switchboard, but I’m not gonna even take the chance of clicking it. [Laughter] Tricia, I’ll let you do it. My technically-challenged fingers today.

Tricia Kenney: Hi, Savannah. Is that you?

Savannah Lodgsdon-Breakstone: Hello?

Sharon daVanport: Hi, Savannah.

Savannah Lodgsdon-Breakstone: Hey!

Sharon daVanport: I’m sorry I was a little delayed in getting you that call-in number. My screen has taken on a mind of its own today and decided to just bounce all around. But I’m so glad that you called in; I wanted you to be able to give an update. You had a couple different things that you did this month. Weren’t you involved in a webinar?

Savannah Lodgsdon-Breakstone: Yeah. I did a webinar with National Youth Leadership Network on violence and disability. We mainly focused on domestic and caregiver violence. You can get the transcript of that from the National Youth Leadership Network if you’re interested. There’s also a young man from Hawaii who’s an advocate who was in on the call, as well as a representative from F.R.I.D.A., which deals with feminism and women’s issues and disability.

We did have a number of things that I wanted to mention. We talked about how making sure that education—especially around sexuality—is really important to making sure that people can keep themselves safe, and how using pet names for predators is usually not a good idea, especially for people on the spectrum. Even though we might not want to think about our children or our classmates being in a situation where they’d have to protect themselves, we have to recognize that it’s possible for that to happen and to prepare them for it anyway.

Sharon daVanport: Right. For the most vulnerable in our population, absolutely, that’s good advice.

Savannah Lodgsdon-Breakstone: And then we had one woman call in. She works at a domestic violence help center, and she wasn’t sure how to communicate with somebody who’s non-verbal who was experiencing abuse. I told her: “You have to keep in mind that speech isn’t the only way to communicate. Even just having homemade picture boards at a center like that could mean the difference between somebody suffering in silence and somebody being able to get to someplace where they’re safe.

Sharon daVanport: Oh, that’s real excellent, Savannah. Good. Very good. Wow. That was really great that you were able to participate in that. Now, is that something that they have on a regular basis? Do they do these webinars on a regular basis, Savannah? Do they announce when they’re gonna have them?

Savannah Lodgsdon-Breakstone: Yeah. They do announcing when they’re going to have webinars. If you’re on the mailing list for National Youth Leadership Network, they’ll usually send it out. They’ll also send out things for their conference. They’re gonna have a conference at the end of July that I’m going to be going to in North Carolina. If you’re between 18 and 28 years old, then there are scholarships available to attend the National Youth Leadership conference.

Sharon daVanport: Oh, that’s wonderful. We’ll post a short article with the information, where they could get that. I’ll contact you later on Skype today, sometime this weekend. I know you’ve had a lot going on, Savannah. I so appreciate you being able to call in. Savannah’s had quite the last 48 hours going on. Just you calling in, I really appreciate that, Savannah, to give everybody an update. I know you’ve had quite the time.

But also, too, I wanted you to be able to explain it: Now, you’re going to Autreat? You and Paula Durbin-Westby are presenting, is that correct?

Savannah Lodgsdon-Breakstone: She’s some personal issues come up. You have to deal with your own family first before you try to take care of the world. She asked if I’d be okay doing it on my own, and I said: “Okay.”

Sharon daVanport: All right. You’re going solo. [Laughter] When is the Autreat conference going to be?

Savannah Lodgsdon-Breakstone: Autreat is usually the last Monday of June. [Unknown] I’m gonna be presenting on Tuesday about how to go from advocating for yourself and your own circumstances to advocate on a community level and on a state level. Going from personal advocacy to policy advocacy, and making sure you change the system so that people don’t have to be in a position where they keep fighting the same battle over and over again.

Sharon daVanport: You’re absolutely correct. It starts June 28, the las Monday of June. I like the concept of Autreat, and if anybody gets a chance they really should go over there and visit the website. It’s very good.

Savannah Lodgsdon-Breakstone: Yeah. I’ve been to Autreat twice. It’s a really positive experience.

Sharon daVanport: All right. Nice. As we said before, Savannah is our director of advocacy, so we have some really exciting things that we’re trying to put together, and different visions that we have for AWN.

I can’t say this enough. AWN is new, so we got online before a lot of things that we have in our vision and in our future that we are definitely gonna do. We didn’t have those set up, but it doesn’t mean that we’re not working on it. The webinar Savannah was involved in in addressing caretaker violence and domestic issues, that’s something that’s gonna be a huge part of AWN: addressing all kinds of violence and people who are vulnerable, and those who are disabled. That’s gonna be a huge part of AWN, and Savannah is gonna be helping us to lead the way and understand more about that. We do appreciate everything you’ve done, Savannah, and everything you continue to do—especially with the craziness of life and everything that that brings us. [Laughter]

Tricia Kenney: Yeah, thanks.

Savannah Lodgsdon-Breakstone: You’re welcome. Speaking of the craziness of life, my grandmother’s shown up to deal with what happened yesterday.

Sharon daVanport: Oh, okay. Savannah lost her cat. I don’t wanna bring too much of it up, just so everybody knows what we’re talking about. Savannah lost her cat. Sorry about that, Savannah. All right. Well, big hugs to you, and I will be contacting you this weekend. We’ll get something written up with some stuff about everything that’s been going on, okay? That’s good stuff on the webinar. We’ll talk to you later, Savannah.

Tricia Kenney: Savannah, you take care, okay?

Savannah Lodgsdon-Breakstone: Yep. You, too.

Sharon daVanport: All right. Bye-bye.

[Savannah hangs up.]

Sharon daVanport: Okay. Wow. Just so much going on. I’m glad that we did this show, so that we could discuss everything that’s been going on.

Tricia Kenney: Yeah, definitely. It’s really nice that we could bring forth our board members and let people know exactly what we’re doing and what roles everybody’s playing and a little bit of what our plans are for the future.

Sharon daVanport: Right. And if anybody wants to get over and check out our website, they can. I just encourage everybody to get over there, because we really are dedicated to providing effective supports. That’s part of our mission statement: to provide effective supports to autistic females, and that’s of all ages and it’s gonna be through our community and advocacy and resources. Being new and having our vision and our goals that we wanna set about, we’re looking for people to volunteer and be part of our organization. Contact us. There’s a contact form over at our website, and we encourage you to contact us and let us know if it’s something that you’re interested in doing.

Gosh, I think that just about wraps it up. What a busy hour that we had. I don’t know if there’s any other comments or anything. I don’t see anything.

Tricia Kenney: And a big thank you to everybody at AWN. Everybody is a volunteer at this point. [Laughter]

Sharon daVanport: Right. We are.

Tricia Kenney: And the amount of time and effort that everyone has put in so far has just been so wonderful and it’s going in really great places. I really appreciate how this group is working together.

Sharon daVanport: In the next couple months, we’re gonna be having some fundraisers. We’re gonna be having some raffles and some really great prizes. We’ve had some really great companies and different stores and stuff offering to give us some really great prizes to where we can have some raffles. We’re trying to really start some fundraising and get some funds coming in while we’re out there applying for our grants and stuff.

Tricia Kenney: There are so many angles in the autism community that we’re trying to assist, and that we will be assisting in the future when we do have that funding coming in right now. Thee is a need to actually have a financial way to help people, especially when there’s domestic violence or abuse going on. There ends up being legal fees or things like that, where people in our community just are not able to get the help without financial backing.

Sharon daVanport: That’s right. We’re dedicated to building our organization towards that, and you need funding to do it. We’re excited to be able to have a couple fun fundraisers. They really are. I like that the word “fun” is in “fundraising.” We’re gonna make it fun. [Laughter] We’re gonna make it fun and exciting and affordable for everyone: $1 for a raffle or whatever. It’s gonna be something that we want everybody to participate in and spread the word and have some fun for a really great cause.

I think that’s it for me, Tricia. I don’t know what else to add to our wonderful hour.

Tricia Kenney: I hope that everybody is going out there in their communities and doing what they can to raise autism awareness. Like we were talking about before, going to a store and letting them know about autism. Kind of like what Sandy did, but on a smaller scale. [Laughter]

Sharon daVanport: Contact Sandy if you wanna do it in your area. She’ll be glad to help you and have AWN be part of it.

Tricia Kenney: Right. Just go around your community and educate people.

Sharon daVanport: That’s right. ‘Cause autism awareness doesn’t stop today on April 30. We continue it and we continue it on through every day, because it is our reality. We continue on with it. I wanna thank everyone for joining us—everyone in the chat room, and everyone who comes in later and listens to the podcast—thank you for staying with AWN and listening to our broadcast. We will be coming to you soon. Either this weekend or next week we’ll be posting the next show, which is gonna be with Taylor Morris. We look forward to seeing you guys then. That’s it for us here on AWN radio. Goodbye.

Tricia Kenney: Bye-bye.


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