Other People's Words

AWN interview with Paula C. Durbin-Westby

Posted in Uncategorized by Tera on June 5, 2010

A transcript of theAutism Women’s Network interview with Paula C. Durbin-Westby about her work with the Interagency Autism Coordination Committee.

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN Radio. Today is Sunday, February 28, 2010—I guess it’s Sunday, depending on where you are in the world. My name is Sharon daVanport. Joining me today is AWN Radio co-host Tricia Kenney. How are you this afternoon, Tricia?

Tricia Kenney: Oh, I’m doing lovely. How are you?

Sharon daVanport: Fine. Just getting three or four e-mails right before the show and panicking. [Laughter] It’s changed a few last-minute things that we were working on for next week. But that’s good for me to get a [unknown] once in a while so I can go ahead and change things around.

Before we get started, Tricia, I wanted to mention that we are announcing our contest winners next week; we’re gonna announce those during the show.

Tricia Kenney: Yay!

Sharon daVanport: That is sponsored by our radio show sponsor b-Calm Sound I really like their product. I know we talk about this all the time, but they truly are a great product. My son uses their products all the time, and I’ve listened to a few of their Audio Sedation soundtracks. They help children and adults who have ADD, ADHD, auditory processing challenges to relieve stress, relax. They’ve even done a study now which shows that it even helps the level of concentration that someone is seeking to increase. That’s amazing that Curtis was able to explain that the last time he was on. I thought that was interesting, that they were finally able to get some research results.

Tricia Kenney: Yeah, it is. What a great thing to have to back up your product.

Sharon daVanport: Right. I think so; I think that’s awesome. I know, personally, just from listening to it and hearing them, I know it works great. I hope that everyone will hop on over there and check them out and come back next week for our show. We’ll have details posted soon. That may change a little bit for our next show; we’re not quite sure [Laughter] but we’ll find out this afternoon and post it on our site.

Don’t wanna waste too much time, because we’ve got a great guest with us today: Paula Durbin-Westby’s with us. Paula sits on the board of directors for ASAN, and she also coordinates ASAN Virginia. She just does so many other things, that I think I’m going to go ahead and bring Paula on so she can explain to us exactly what she does with all these different organizations. How are you today, Paula?

Paula Durbin-Westby: I’m fine. I’ll introduce myself: I’m Paula Durbin-Westby; I’m on the board of directors of the Autistic Self-Advocacy Network and I’m the Virginia coordinator for ASAN. I work on public policy advocacy, educational issues, media and community outreach. That’s some of what I do. I also work with and talk to many individuals about all different kinds of topics.

Sharon daVanport: Paula, with the IACC, first can you tell us what that stands for and explain what it is and why it’s so important, as well as your involvement with them?

Paula Durbin-Westby: The IACC is the Interagency Autism Coordinating Committe, and I go to a lot of the meetings. I’ll say a little bit about how I got involved and then say what it is. The first meeting I went to was on March 14, 2008. Ari Ne’eman, the president of ASAN, asked for people to go to the meeting and deliver comments. I said yes, and I got very interested in the IACC process at that time, and in developing comments that reflected the neurodiversity and ASAN point of view.

I’ve attended nine full IACC committee meetings, I speak freely in the public comment sessions, and I’ve given a presentation on ethical concerns in autism research and was invited to participate in the recent scientific workshop that was at the end of September 2009. I’ve also written talking points for people to use when writing requests for information and other ASAN documentation presented to the committee. All the information about ASAN’s participation in the IACC can be found on the ASAN website., and also on the IACC website in the minutes from various meetings.

I’ll tell you a bit about what the Interagency Autism Coordinating Committee is, and why it’s important. The IACC is a federal advisory committee, and it was created by Public Law 109-416, which is also known as the Combating Autism Act. They almost never use that descriptive title when referring to this law, because of the implications of the idea of “combating” or “fighting” or military metaphors of attacking autism.

There are different agencies represented on the IACC. A lot of them are from the Department of Health and Human Services: The Administration for Children and Families,, Centers for Medicare and Medicaid Services, CDC,Health Resources and Services Administration,, the Office on Disability, the Substance Abuse and Mental Health Services Administration. And then the Department of Education is represented by the Research-to-Practice Division Early Childhood Programs,and they also do special education programs. There’s one person, Stephen Shore, who is on the autism spectrum. Also represented are the Autism Society of America; the Autism Science Foundation; SafeMinds; there are two parent representatives.

I wanna say a little bit about what a federal advisory committee is. I’ll try not to make this boring,[Laughter] but I think it’s important. It’s an advisory body that can circumvent bureaucratic constraints to collect a variety of viewpoints on specific policy issues. The committees are often created to help the government manage and solve complex or divisive issues. I think it’s important to clarify that that’s what an advisory committee is, and part of what it does in order to better understand the reason for the IACC and why it’s important to follow and monitor and give input to the committee, so just bear with me as I say a little bit more about these committees.

The Federal Advisory Committee Act was passed in 1972, partly because of the belief of many citizens and members of Congress that committees at that time were inefficient, lacked adequate control or oversight, and some citizens believed the committees failed to sufficiently represent the public interest. Before the passage of the Act, many committees had a closed-door mee,ting policy. Now, the committee requirements are that the membership must be fairly balanced in terms of the points of view represented, and the advice provided by the committees be objective and accessible to the public.

They’re created to gain expertise from outside the federal government, and they’re often created to bring together various experts with different opinions and political backgrounds. As most listeners probably know, there are many points of view represented on the committee, and that’s very intentional. It does not make for streamlined decision-making or extreme efficiency. That’s not really the purpose of a federal advisory committee.

People have often commented that IACC doesn’t get anything done, and it may appear that way because the process of coming up with recommendations is a very messy one, with a lot of varying and even conflicting input by the members. It wouldn’t make sense for the committee to offer 19 or however many members of the committee there are recommendations and they have to come up with one. They have to wrangle about what the recommendations will be, and then take those and follow the mandated things like updating a strategic plan yearly and getting reports to Congress.

That is part of why the IACC operates the way it does. It’s also because of the rules that it be very transparent to the public, and public input is requested. There’s a big opportunity for people—whatever their beliefs about autism—to get involved and to send in comments and try to influence the committee, which makes advised recommendations about autism research.

The IACC has five basic tasks, which are: 1) develop and annually update a summary of advances in autism spectrum research; 2) monitor federal activities with respect to autism; 3) make recommendations to the secretary of Health and Human Services regarding any appropriate changes to such activities and public participation in decisions relating to autism; 4) develop an annually updated strategic plan, including proposed budgetary requirements. Now, there’s no funding associated with the IACC, but the members give funding recommendations which are professional advisory-only in nature. Then 5) they have to submit the strategic plan to the Department of Health and Human Services and update the plan annually.

Tricia Kenney: How do they choose who is going to be on the panel?

Paula Durbin-Westby: In the Public Law, there are specific requirements about what kinds of agencies must be represented. In the Law, there’s at least one individual with an autism spectrum condition and that’s what there is right now—one individual. ASAN has always argued that there should be more than one individual: something that’s that important and with 17 or 18 other members on the committee.

Tricia Kenney: It doesn’t seem like autistic people are fairly represented in that respect. Is there a way to change that, so that more autistic people can be there to speak for themselves?

Paula Durbin-Westby: I wanna say that I think Stephen Shore does a good job, but that sometimes I think he’s outnumbered. [Laughter] I think one thing that the public can do and what ASAN does when we go in is constantly call for additional members. There’s not a limit on the number of members. Now, of course, the bigger a group gets, the harder it would be for them to make decisions, weighing the opinions of many, many members, so there’s probably going to be a limit of how many members would be allowed on it at any one time.

Sharon daVanport: Trish and I have watched it live; we’ve gone on there and watched the meetings going on. On their website, you can even go to past ones: they have everything up there. I recommend that people do that. I learned so much just by going into those IACC meetings. At first, I was kind of lost. I didn’t know what was going on. But after the third or fourth one, it started making a little bit more sense.

Katie Miller, I saw a video of her speaking at an IACC meeting before. When it comes to your involvement with the ASAN and the IACC, can you tell us about ASAN’s involvement and the concerns and priorities that they have for the IACC process?

Paula Durbin-Westby: I wanted to say something about Katie Miller. She has given some awesome testimony at the IACC, and if anybody hasn’t heard her, I highly recommend it. I wanna give her a standing ovation when she speaks.

Tricia Kenney: Yeah, that was awesome.

Sharon daVanport: I know. It was really good.

Paula Durbin-Westby: I’ll talk about ASAN’s involvement and our concerns and priorities. Many people probably already know this, but the IACC puts out RFIs or Requests For Information to obtain public input, and they’ve also had town hall meetins. Members of the public can send in written comments, and there’s a public comment session where you can go and speak or use your augmentative and alternative communication device at every IACC meeting. That’s required by law. I’ve learned that people send in comments even when they’re not planning to speak. The number varies—there may be four or five people who speak during the public comment sessions, and they also get seven or eight written comments. I think somebody said they get around 13 per meeting.

On the agendas, which are interesting—you can see what kinds of presentations about various topics that would be of interest. People are invited by the IACC. In November 2008, I gave a presentation on ethical concerns in autism research. Then in May 2009, Dora Raymaker, who is on the board of ASAN and she’s also co-director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), which is a research team that conducts community participatory research which includes individuals on the autism spectrum as sole participants.

Dora gave a presentation on augmentative and alternative communication. I also wanted to mention Joanne M. Cafiero, who’s in autism research also gave an excellent presentation on AAC, and that is one of our priorities that we talk about—funding recommendations that would include more research into this very important area that seems often to be ignored or not treated as seriously as we would like to see it treated.
There’s been also presentations on a variety of other topics, ranging from vaccines, services and support programs, and the various agencies report in with periodic updates about what they’re doing.

ASAN’s involvement in the IACC started in November 2007, which was the first full IACC meeting after Public Law 109-416 was passed in 2006. Ari Ne’eman attended the first meeting and he delivered comments. At that meeting, Ari expressed many of the concerns that ASAN has subsequently focused on in our input to the committee. He expressed the concern that increased interest in autism is important, but it could be counter-productive without an equally strong commitment to autism acceptance. He said right at the outset, the name of the “Combating Autism Act” is not in the interest of people on the spectrum, noting the difference between that combative metaphor and the opening language of the then-proposed Extending Promise for Individuals with Autism Act, which is a much nicer title. In that act it stated: “Autism is a natural part of the human experience.”

I have also addressed the idea of combating autism in my comments and in other presentations I did. I gave one in December last year at the CAAI, which is the Combating Autism Act Initiative. It’s a program of the Association of University Centers on Disabilities (AUCD), and at that time I said to everybody assembled there that the name of the Act is unfortunate. And I said that though the name is not likely to be officially changed, people do not have to repeat the language in their programs and writings and initiatives. I also take up that idea again in my recent article in Disability Studies Quarterly, which just came out last week. In that article, I stated that:

“From its inception, many autistic people have taken offense at the war rhetoric in the title, with its implication of violence of violence—in this case, violence to autistic bodies.”

People who desire a cure for or prevention of autism often point to the short title of that Act as proof that autism must be combated aggressively, endorsing an “anything goes” philosophy and eschewing anything less than the complete eradication of autism, which some of us interpret as the eradication of autistic people.

I’d also like to note that he whole “war on” concept plays into things like bullying or mistreatment of people with disabilities. That’s why it’s so important to pass the Preventing Harmful Restraint and Seclusion Act that’s now being considered in Congress.

Tricia Kenney: You must hear a very large array of that type of language during these meetings. Is it completely not allowed to ever respond or make comments about any comments made by some other speakers? Are you just supposed to sit there and bite your tongue the whole time.

Paula Durbin-Westby: Oh, I don’t sit there and bite my tongue, although this is going to change. I would sit there and I would hear people say things, and I had turned in my written comments a week before. I would also have a copy of my written comments, because I don’t do them from memory. If I heard things during the meeting, I would skip lunch during the break and I would re-write some sections of my comments so that I could comment on what was just said in the meeting.

The comments in the past have always been at or very near the end of the meeting, so I would sit there all day and reword things. Now they’re going to have the comments be at the beginning of the day. I know it’s not just to keep me from using what people say in my comments. [Laughter] It’s because a lot of people have requested that they make their comment, and then nobody says anything because it’s the last thing at the end of the day and there’s no time left in the meeting, so they don’t get any feedback.

I go so often, because I’m participating in a scientific workshop I feel like I have all the feedback I need. But that’s not true for other people who spend all the time preparing their comments and getting to the meeting and delivering them; they didn’t really hear anything.

Sharon daVanport: Paula, what have you said about topics that you discuss at these meetings when it is concerning research into communication?

Paula Durbin-Westby: I’ll talk about that, and then I’ll come back to a couple of other things that I’ve talked about. Regarding augmentative and alternative communication, I’ve brought up that topic in almost all of my commentary and so have other people who have been to the meetings like Ari and Katie Miller.

In February 2009, I decided to devote most of my comments to AAC. I said: “Regarding communication technologies and systems, the strategic plan mentions picture exchange communication systems (PECS), but does not address other systems.” There was just one mention of PECS and not even a discussion of it in the strategic plan. After that meeting, they subsequently invited two people to give presentations on AAC on May 4 [Dora Raymaker and also Joanne Cafiero.]

Dora uses AAC to communicate, and she’s in Oregon. She was able to give her presentation via phone text-to-voice technology and overhead illustrations. She would not have been able to give her presentation without AAC. The presentation included sections on why we care about communication, and I’d like to use a quote she gave from Joel Smith, who says:

“One of the biggest keys to an autistic person getting the life they want is for that autistic person to be able to express in a way that allows the largest number of people to understand their own desires and thoughts.”

She also [covered?] very important areas such as the basic elements of communication. One of the most important things that people don’t realize is communication is not equivalent to speech. There are many, many other aspects that go into communication. She talked about communication and autistic experience, including sensory differences, movement differences, processing and language differences. She talked about building just so that communication differences can be gapped. It involves effort not only on the part of the non-traditional communicator, but also on the parts of the other communication partners involved.

Then Joanne Cafiero discussed her current research which focuses on how autistic children with severe communication impairments learn language. She said that the minute a child gets a diagnosis, they should get an AAC device—it’s that important and can be that helpful. She talked about how her studies have shown that it facilitates other kinds of language development, to be able to have something that you can use to communicate with.

There are a lot of money barriers, because you don’t know at the beginning what kind of communication device or communication system [a person needs.] It’s not just the device, it’s the whole system and the people involved. She said it should start very early.

After both of those presentations, I perhaps naïvely thought that there might be a real change in some of the IACC’s priorities, and I expected to see stronger language about AAC in the 2010 plan. But unfortunately, the 2010 strategic plan does not really call specifically for research into AAC, although it’s noted that it’s an area that presents a research opportunity. None of the short-term or long-term objectives in the Treatment and Intervention section, or in any other section, call specifically for AAC research. For a disability that frequently or even always involves some communication difficulties—and sometimes profound communication difficulties—for this critically important area to be overlooked is a bit disconcerting.

Tricia Kenney: Yeah. We’re talking about autism. I don’t understand how they can do that.

Paula Durbin-Westby: Yeah. The strategic plan should recommend funding specific research initiatives into emerging, promising communications technologies. As I’ve said, for those with no or little expressive language, and for those who do have expressive language but cannot always access it reliably…

I’d like to say that I always find it very interesting when I do a presentation or a radio show like this. I don’t have very reliable access to language or stringing sentences together. But what I do is, as I’m sitting here, I have written down everything that I’ve said—like, 99 percent of what I’m saying, even though it sounds like I’m just sort of talking conversationally. I put in things like “like” or “well, anyway” just to sound like I’m not reading a scholarly monograph or something. That’s how I do it at this point, and it’s not always reliable, especially during things like conference calls.

Sharon daVanport: I think a lot of us on the spectrum do that. I know that I do. As often as we can, Trish and I really try to stick to a specific outline, at least, when it comes to the shows here. I just find it’s easier that way. I’m glad that you did that, and I’m glad you sent the questions that you had prepared, too. That helps us know what you wanted to talk about and touch base on, too, Paula.

Paula Durbin-Westby: Yeah. I thought of that at about 1:00 AM. I was going over my script, and I thought: “Well, what are they going to ask me? If they were going to ask me questions, which they probably will, what would they ask?” And I thought: “I’ll just write these down.”

Sharon daVanport: I was teasing with Tricia, and I said: “Well, we oughta just get Paula to start writing all the questions for our guests. She did a really great job today.” [Laughter] So we cannot take the credit for these questions. I totally trashed the outline I was gonna do. So what else can you tell us about the scientific workshop stuff?

Tricia Kenney: Can I ask another thing about the IACC? We saw a woman who went up on the stage with her son. She was talking essentially about all the things he will never be and all the things he will never have and what a hardship it all is. To me, that was abuse. It was nothing short of abuse. You’re right in front of this child and you’re saying these awful things about him and his existence. Is there any sort of way that they can regulate something like that, so that children are not damaged by this sort of action by parents?

Paula Durbin-Westby: I wasn’t there when that happened, and I haven’t seen that. How old was the child?

Tricia Kenney: Older. Probably late teens or something.

Paula Durbin-Westby: That would still be hard to stand there and hear your mom talk about you like that. I’m not certain about this, because I don’t know every single thing about the regulations, but from what I’ve read, many different points of view are supposed to be represented. I’m going to go look at the video on that and see.

Tricia Kenney: It was just really disturbing. I guess that she was trying to make a point about: “My son can talk for himself; I’m talking for him,” but it really ended up being this very painful thing to watch. It’s not like he’s deaf; he could hear everything she was saying even though he wasn’t talking. But I think she was under the impression that he couldn’t understand, or that there was nothing going on upstairs or whatever the situation was. But the point was, he was still there as she was making these comments about him. It was just pretty disturbing.

Sharon daVanport: Paula, do you think now that you’re going to be making your comments at the beginning and you know who’s going to be speaking, are you able to include in some of your comments at the beginning suggestions like that? If a parent or someone’s speaking about someone else…

I guess it’s all a process, too, Tricia. Don’t you think? I believe that it’s a process of changing the language and—

Tricia Kenney: Perception?

Sharon daVanport: Yeah, it is, and the way I took it, I know exactly what you mean. I was watching the exact same [video,] because we were having heart failure together. But we were on the phone with one another watching this on our computers, and I remember when that happened.

I also took away that I believe that this mother really had never been exposed to or had a conversation with someone like Paula. Perhaps if Paula would’ve been there, she could’ve gone up and talked to her and she would’ve heard a whole different way of speaking about neurodiversity, autism, the spectrum. Sometimes I think it’s just a matter of exposure, too, and what people are hearing, what they’re knowing.

Tricia Kenney: That would be the next thing I would bring up. Since there are autistic people on the panel and quite a few autistic people have shown up here and there for the meetings, do you think that it has made a difference? Do you feel within your heart of hearts that you’re helping people to see more clearly what autistic people are, as opposed to what they’ve been fed over the media?

Paula Durbin-Westby: You’re totally departing from my script.

[Laughter]

Tricia Kenney: I didn’t get your script; I’m sorry.

Paula Durbin-Westby: One of the reasons why I’m so good at making up questions is because I know people will ask me questions and I have to have written down the answer before they ever ask it. So I have to anticipate what on earth somebody could ask me, and I’ve got them all on note cards: “If they ask me this, I’ll look at this note card and give them that answer.” That’s actually really how I do it.

Tricia Kenney: I’m sorry. I didn’t even get a copy. They were supposed to go to Facebook, right?

Paula Durbin-Westby: It’s too late. You’re asking me: Do I really feel like what I’m doing is having an impact? I guess there are two parts to that. One is personal, and the other is whether or not I or ASAN is having an impact on the IACC. The reason I got into advocacy work is that I really didn’t like most of what I read online when I first started learning about autism. I just thought: “I’ve spent my entire life trying to accept myself as a person who’s different from everybody else I know and have trouble making friends” and some things like that.

I used to be a pretty private person and now I’m not, because I felt really strongly that somebody has to counteract some of the negative stereotypes. I didn’t have a negative stereotype of myself and very early on I met people who felt the same way. There have been people way before me that have also done self-advocacy work with a more positive or neurodiversity approach.

The thing about having an impact on the IACC, I think yes, we have had impact—ASAN, me and other advocates. Also, anybody who participates has had impact on the IACC as the members discuss the things that get sent in during the Request for Information or the public comment sessions—some more seriously than others.

When I went to the scientific workshop, I was invited to be a panelist and there were five panels that each covered [different things]. I was on the Diagnosis and Assessment panel. Then there’s Treatment, Intervention, there’s What Does the Future Hold? They’re written in the form of a question that a family member or somebody might ask, and now in the 2010 plan there’s another section that’s all about surveillance and data gathering.

I was invited to be on the workshop and a lot of what I talked about was language use. As I said, there were 30 panelists plus the members of the IACC. When I heard different scientists and researchers from all different kinds of areas and different disciplines and the kind of language that they would use about autism, I even said: “Language, language, language. It’s really important, because it can even color how you think about autism and what kinds of research you decide to do and what your research focus will be.”

One person said that autism was “a deficient brain,” and I really don’t feel like I have a deficient brain. I was able to comment on what he said later in the session.

Tricia Kenney: Wow.

Paula Durbin-Westby: When people have that model—maybe that’s the training that they got when they were in medical school or learning how to be a researcher…[But] there are also a lot of positive qualities or gifts or even just neutral things associated with autism. A lot of times people talk in terms of “it’s all bad” and negative. I wasn’t really making eye-contact, but I sort of looked around the room after I said that and I could see some people nodding, like: “Yeah. That makes sense.”

[If I?] could change the research paradigms…I know that sounds really idealistic but it’s one of my hopes. I don’t think it’ll happen this year or next year; I think it’s something that I’ll spend the entire rest of my life working on, and other people will, too, not just me.

Sharon daVanport: Paula, who writes the questions? Who develops the outline and questions for the IACC meetings? We have a comment from Sarah in the chat room. She says these questions have always struck her as being very ill-conceived.

Paula Durbin-Westby: The questions for the sections? The questions are for the different areas. So the Diagnosis and Assessment question is: “When should I be concerned?” That’s a question that could be seen as a little…

Tricia Kenney: Right. It’s trying to figure out if your child’s diabetic or they’ve got heart failure going on or something. It aims towards the wrong things, doesn’t it?

Paula Durbin-Westby: Right. Under that, there were three subquestions, and in the 2009 plan, it was: “What are the early warning signs?” I said a lot about that at that meeting. This year in the 2010 plan, it says: “What are the early signs?” It doesn’t say “warning signs.” And then there was also: “Are there typical characteristics that are part of an ASD diagnosis?” and there was: “How much variation is there in symptoms and severity associated with ASC?

So that’s just the first diagnosis questions. Then there’s: “How can I understand what is happening in early development?” My least favorite wording of a question is: “What caused this to happen and can this be prevented?” That is the section that talks about genetic risk: “Is there something in my genetic or family history that poses a risk for ASD?” “How might genetics or the environment influence…” It could be written in a more neutral sort of way.

The document has things that I was hoping they would get rid of, like: “The cost of ASD to affected people, families and society is enormous” and “Autism is emerging as a national health emergency”—things like that that are very alarmist in nature. They’re put in there to make people react, but I think it makes people overreact. I argued: “You could have that same concept but word it as neutral.”

Science is always supposed to be objective. Now, we know that it’s about human beings and so it’s never really completely objective, but with using that kind of language, any pretense to objectivity is thrown out the window, in my point of view. So does that answer Sarah’s question?

Sharon daVanport: The exact way that she worded it is: “The way the IACC questions are written have always struck me as very ill-conceived.”

Paula Durbin-Westby: I can say I agree. I think that some of the concepts that are being addressed are legitimate, but the way it’s worded [is ill-conceived.] There was something about “early red flags,” and I don’t like that metaphor anyway.

When the 2010 plan came out, there are some sections where I could see that public input and my input at the scientific workshop did have some effect, but it wasn’t consistent throughout the plan. It would use “early signs” and then it would go back to “early warning signs” within the same section or within another section.

There was also talk [from the IACC members] about [how] if you have a strategic plan, then you shouldn’t really change it a lot because you wanna use it to compare this year to last year. If you rewrite the whole thing, then you can’t really compare this year to last year. But I think if there’s sections like AAC missing in action—not even in there—that that should really have had a pretty serious rewrite. If there are parts of it that are not well-developed, then it seems like a good idea to just go ahead and change it. Then maybe you wouldn’t have to change it again in subsequent years.

Sharon daVanport: Is there anything else you wanna touch on about IACC still, before we move on to the workshop?

Paula Durbin-Westby: I probably should talk about the Disability Studies Quarterly article, and the whole Disability Studies Quarterly issues. It’s not just my article there. I think there are 40 authors in that.

Let me do the scientific workshop first. I think I got selected to be a participant because I’m always at the IACC meetings. I know I’ve been there in person more than some of the members, but that’s a deadline problem and not really the fault of somebody. I’m closer to D.C. I was there and I offered so many comments and I talked to people after the meetings. You had mentioned about talking to parents, and I do talk to parents who come and comment, and just talk briefly during the break time. That’s why I got selected to participate. I was participating in everything else so much anyway.As I’ve already said, I do think it had some influence.

What we did in the scientific workshop: there were five panels. I was on panel one. Geri Dawson from Autism Speaks and I gave the presentation as a co-presentation, and that was interesting.

[Laughter]

Sharon daVanport: That would be interesting, being alongside Autism Speaks.

Paula Durbin-Westby: This is interesting, the process. I think it happened more with my panel than with any other panel. I’ll say it was all my fault, and it’s part of my communication differences. We had two pre-conference calls. The first conference call, Geri Dawson had gone ahead and written a lot of ideas for what our panel would suggest. We were supposed to identify research opportunities and places where the plan could be tweaked and made a bit better for the 2010 update. She sent in a document, and then everybody used that as a template for how our discussion went on the first conference call.

Well, between my auditory processing and my needing to go off and think about things for a while, I came back with almost a complete rewrite of 13 or 14 points she had that everybody almost all agreed to. There were a number that I didn’t really agree with, but I couldn’t really say it fast enough during that first conference call. So I sent them out to the panelists in between the two conference calls.

The second conference call was spent going over what I had said and at one point, somebody said: “Well, we have already agreed on this. I thought we all agreed on this.” I said: “Well, you all agreed.” For a second, I think everybody stopped. We don’t know who in the public is listening in. All the calls have to be publicly accessible.

[Laughter]

We did have some back-and-forth e-mails that were not posted on the IACC website, but the transcript and summary of what we talked about was published. So I said: “Well, you all—” So I went in and put my alternative changes in: a stronger emphasis on addressing ethical concerns and some language changes. We just went through everything that I brought up, because it seemed easier to do it that way and was probably a better idea.

Sharon daVanport: That’s great, though, Paula.

Paula Durbin-Westby: Also, I submitted to the Office of Autism Research Coordination (OARC,) and they’re the people who support the IACC by doing a lot of the planning and developing concepts that come out of the meetings and putting things into a framework and then bringing it back. Then the IACC decides whether or not that’s exactly the way they wanna do it.

Those people are phenomenal. I can write to them and ask for [unknown] for the meetings or anything that’s available so that I can work on my comments. They’ve been very helpful. They just support research, development of ideas. The IACC members don’t sit down and write the strategic plan; it’s written by the OARC based on what people have talked about.

Sharon daVanport: What can we in the autism community do to be more involved with commenting on the IACC?

Paula Durbin-Westby: If you go onto the website, you can see Requests for Public Comment, and you can look to see if there’s any upcoming requests. There’s not right now; the last one was in August 2009. You can see a lot of people wrote in. For just that one, there were 290 submitted responses. If you click on “Responses to the RFI” you will see that every single one of the 290 responses is available publicly. What they do is take out personally-identifying information. If you’ve read enough of these or you know the people, you can sort of tell who wrote what. [Laughter] Not on all of them, but sometimes I think: “I know who that is!”

I actually have read all of the responses. That one had 290, and there was another one that has something like 547. I sit there and read them because that’s just my personality.

[Laughter]

If I’m going to do something, I’m just going to overdo it or focus as much on it, because that’s how I learn about it. Then there’s also an archive over on the right that says “Related Information: Archived IACC Requests for Information.” You can get an idea that whenever the IACC puts out anything like that, I always post it everywhere. That’s just one of the services I provide. [Laughter]

I post it on my Facebook, on the ASAN discussion list and on AutAdvo and on as many advocacy lists as I know about, and bloggers pick up on it and post things. I think it’s really important because some of the language that I read when I read the 547 responses, there was exact language that people wrote in. Some of it was from ASAN and some of it was from other people. Those exact words got into the 2009 plan and the 2010 plan.

Sharon daVanport: Ah.

Tricia Kenney: Wow.

Paula Durbin-Westby: Different concepts got in, and some things didn’t.

Sharon daVanport: Paula, do you care if we take a call from someone in the chatroom who has a question for you?

Paula Durbin-Westby: Okay.

Scott Jackson: Hi, Paula; this is Scott Jackson. I attended a conference on the best treatment of anxiety and depression, which as you well know, a lot of persons on the autism spectrum have reoccurring problems with, even through adulthood. This conference was with Terry Frolick, and it was the exciting convergence of mindfulness and neuroscience. If I could just expel on a few things here, to give you an idea of where I’m coming from for the question:

Triune sections of the brain include the brainstem, the cortex (one big region) and the amygdala. When I heard this in the conference, the instructor went on to talk about the amygdala, which is the fear center or the “smoke detector” in the brain. Fear gets triggered by the amygdala. It sounds an alarm system and it warns the brainstem. Then it triggers a whole cascade of events, which is the fight-or-flight-or-freeze stress response: anxiety, fear, anger in the hypothalamus and so on and so forth.

I guess my question to you, Paula, is: Have you heard any information on neuroscience in reference to the amygdala in dealing with autism and Asperger’s, ASD?

Paula Durbin-Westby: I can’t be sure unless I go through all the agendas, which I could do. I’ve heard that and I believe I’ve heard it mentioned in a presentation at one of the IACC meetings, but I don’t remember exactly what was said. It’s a thing that I think a lot of people are aware of. I’ve even looked that up myself, trying to find out what research was out there on it.

Scott Jackson: It seems very interesting. I’m a 38-year-old adult male on the spectrum as well. The next question is: I’ve had a lot of trouble finding resources in my area in the state of Maine. I went through every system. I was told I had to drive 200 miles and 400 miles round trip three different times to get a few answers. I wound up finding answers by calling the local University of Maine in Orno. That’s our local university.

They actually have in these universities people who are coordinating efforts in their communities to get involved in studying Asperger’s, autism and anybody on the spectrum with disorders as well. It was good to me because other than the autism society of Maine, they were the best resource in finding the help that I need. I just wanna let you know that those are out there.

Tricia Kenney: What kind of help, specifically? If we’re telling other people out in the autism community: “Hey, you can get help at your local universities,” what type of help?

Scott Jackson: They lead you to other resources. I searched for two weeks for resources and I just ran into walls everywhere I went. It was very frustrating. After two weeks of that, I made this one contact to one person at the local university that does research on this. They took me to a whole list of resources. The man even called me on the phone the very next day and told me that he was interested in finding resources for me and helping me out. I had the resources that very next day and I was thankful for that.

They have a whole list of resources. States may have a 211 system—a whole list. Well, I called 211 and it didn’t help me a bit. It helps a lot of other people, but with adults on the spectrum 21 years or older, it was no help to me. He was able to give me those resources. I’m just putting that out there because I think it’s excellent that these universities are getting involved in that.

I guess my ending question is—and once again, thank you for allowing me to ask the question: Is your agency in contact with any of these universities? If not, are they a type of resource that you might look into in the future?

Paula Durbin-Westby: I guess you were talking about, is ASAN in touch with them? We are not in touch with every single resource, but we now have seven people on the board of directors, so I can relax a teeny bit now. [Laughter] When there were five or fewer than that, I spent a lot of time on it.

I’m in Virginia, and I know I’m learning about the 211 system in Virginia and I don’t wanna digress about 211, but it doesn’t have every single answer and it’s dependent on who wants to participate in it. People have to send their information in, and there might be someone who’s really good as a resource but hasn’t turned their information in to 211 and isn’t participating. You would never know about it.

What I’m trying to do for Virginia—and I end up having files in my computer for other states when I find any kind of resource—is if people will contact us first, I just try and get them to somebody that can help them with whatever their concern is. We’re aware of some of the universities and we’re probably not as aware of some of the others. I hope you’ll send me the information about Maine. I think you’re one of my Facebook friends, so you can just send it to me.

Scott Jackson: I definitely will. Thank you so much.

Sharon daVanport: Thank you for calling, Scott.

Tricia Kenney: Thanks, Scott.

Scott Jackson: Goodbye.

[Scott hangs up]

Paula Durbin-Westby: Are there other callers?

Sharon daVanport: No; we don’t have any right now.

Paula Durbin-Westby: I wanna go back to one thing. I’m doing really good about skipping all over my script. [Laughter] I’m leaving stuff out that I already said. You should see all this paper [unknown.]

[Laughter]

I’ll talk about my Disability Studies Quarterly article and some of the other articles. I wanna do it in the context of one thing that I didn’t bring up about participating. Autism and neurodiversity is the topic of my article. The title is: “Public Law 109-416 Is Not Just about Scientific Research”: Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings.

The reason that got to be a title at all is that I actually said “Public Law 109-416 is not just about scientific research” and that’s one of the times when I completely rewrote my written comments during one of the meetings. What happened was some people were saying: “We need more services and support research” or “We need more” things that were not considered scientific research. The scientists were saying: “No. That’s not the congressional mandate. That’s not what part of the Public Law is.”

So I sat there during the break and re-read the entire Public Law as fast as I could. I found that there are other aspects to the law. Even though it’s called the “Combating Autism Act,” the IACC has among its duties to develop and annually update a summary of [unknown] and related to, among other things: “access services and supports for individuals with ASD.”

Then: “In general, the composed of—” and it lists a number of non-scientific agency members, including “representatives of other federal government agencies that serve individuals with autism spectrum disorders such as the Department of Education and other non-research organizations.” Then at that time I said: “Go back in and add the suggested services objectives, such as training, safety improvement and others that were being considered and maybe turned aside.” I said: “The additions about improving safety and other aspects of service development and delivery are relevant and should be addressed by this committee.”

I sometimes think that there can be a divide on the committee between people who want services and supports and the people that are more focused on different aspects of research. In the Autism and the Concept of Neurodiversity issue of Disability Studies Quarterly, there are about 40 authors and some of them, I’m just amazed that I even got into the same issue with them.

[Laughter]

I write indexes for scholarly books, and some people who have submissions in this are people that I regularly read about in scholarly monographs and I put their names in the index. I’m just: “Wow! That person is in this!” It’s so neat. There are creative works and peer-reviewed articles that are written by real scholars and a lot of special topics. They’re really great. I haven’t read every single thing because I was working on this, but when I get off the phone I’ll start reading some more of them.

Sharon daVanport: If you haven’t touched on anything that you wanna touch on, let us know. We’ll be wrapping it up in a few minutes. I wanna make for sure that we’ve given you a chance to cover everything, though.

Paula Durbin-Westby: When you asked the questions, I skipped over some stuff. I had other things that I was going to say, but if I go back to them it just sounds like I’m rehashing things because we’ve already talked about it.

I could talk about the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE),, because I’ve talked about them at least in three or four times that I’ve given comments. That research group brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of autistic adults. It’s based on the principles of community-based participatory research, where research and community members serve as equal partners throughout the research process—everything from design to implementation to evaluation of the results.

I haven’t participated as much as I would like to recently, but it really is participatory. Right now there’s the Gateway Project, and that’s the current research. You can participate in their surveys going on that are relevant, that come out of discussions about what autistic adults need.

One study is on health care access, which is really important. I did participate in the beginning of working on that. Health care, well-being, problem-solving…sense of online community is one that I don’t know if it’s being worked on right now.

Tricia Kenney: This is a huge issue. It’s very tough for adults on the spectrum, especially when there are no services or the services are so substandard: when you’re getting sent into an alleyway to go see the dentist or something. It’s pretty sad, the states that people have to live in, simply because of their circumstances—unable to work or whatever and they depend on their state at that point. A lot of states don’t give you anything if you’re an adult. It is a huge problem, and hopefully more states will be addressing this very, very soon.

Paula Durbin-Westby: Yes. That [unknown] in how you access healthcare. I’ve had private conversations with people about scheduling, making appointments, and how difficult that part of it is. Or going into an office and being a non-traditional communicator and people make certain assumptions about whether or not you’re competent to participate in your own healthcare decisions. One of the things that I really like about AASPIRE is that it includes autistic people in things that directly affect us.

Sharon daVanport: I’ve heard about their research project, the Gateway one, so I wanna look more into that as well. I think that would be a good topic for us to have on the show sometime—to help people understand that there are research projects out there.

Tricia Kenney: I guess Melody has a question for Paula before we go.

Paula Durbin-Westby: Okay. Hi, Melody.

Sharon daVanport: She said: “What, if anything, is AASPIRE doing to plug into other university research programs?” Are they tapping into those?

Paula Durbin-Westby: Yeah. AASPIRE is based at Oregon Health and Science University. It involves collaborators from other universities, including Portland State University, and then some collaborators who aren’t affiliated with any institution. There’s funding support from Portland State University and the Oregon Clinical and Translational Research Institute and the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH), and NIH Roadmap for Medical Research. And the University of Wisconsin-Madison, associated with the Gernsbacher Laborator

Sharon daVanport: Well, Paula, it’s been really great having you on today. You have so much information! You are so busy, aren’t you? I don’t know how you keep up with everything you do.

Paula Durbin-Westby: Well, I don’t wanna think of that. I got my family out of the house so that I wouldn’t get bothered by a seven-year-old as I was trying to talk. That wouldn’t work too well. [Laughter]

Sharon daVanport: Well, you did really great; you shared a lot of important information and I know that a lot of people in the autism community—It wasn’t long ago, last fall, was it, Tricia, when I really started understanding and openly talking about the IACC meetings. I appreciate you coming on and explaining what they’re all about and how they work. I think it’s real important for us to follow these things going on in the community. Thank you for coming on and talking about that.

Tricia Kenney: Yeah. I’ve just thought from the first time I saw you and started looking at some of the work you’ve been doing, I was just very impressed with you and very impressed with all that you do on a continuing basis. I really aspire to try to do maybe a quarter of what you do. [Laughter]

Sharon daVanport: What’s your secret? You are very busy, Paula.

Paula Durbin-Westby: [Laughter] I think caffeine is my secret.

Tricia Kenney: But you are. You’re making a difference, and people in the autism community really should know the work that you are doing and really support it and get involved, and back up the work that you’re doing as well. Getting involved in some of these IACC meetings and with your local legislation and federal legislation is a great way to do that, and to help the rest of the autistic population.

Paula Durbin-Westby: Thank you for having me on the show. I would really like people to participate. If you feel like you can participate, then you can and you should. Even if you have points of view that don’t agree with mine, because that’s just part of the process.

Sharon daVanport: Right. Well thank you so much, Paula, and we will definitely be having you back. We’ll keep in touch about the upcoming meetings and different projects that you’ll be involved in. You can come back on and update us. Thank you very much, Paula. You have a great rest of your day and weekend, okay?

Paula Durbin-Westby: Okay, you too. Thank you for having me on.

Sharon daVanport: Okay. We’ll talk to you later.

Paula Durbin-Westby: Okay. Bye, everybody.

[Paula hangs up]

Sharon daVanport: Well, I guess that wraps it up for today. Did you have anything to add, Tricia, before we say goodbye to everyone?

Tricia Kenney: No. That was just a wealth of information coming in, and I really appreciate it. I know a lot of these meetings and committees are confusing to people, and we don’t know who put them together or why or what their purpose is. It’s nice when we can get some actual explanations of everything. Other than that, I guess we will see everybody next week.

Sharon daVanport: That’s right. We will go ahead and we will be announcing the time. We are gonna have Adonya Wong and Dr. Fuentes on. We’re actually finalizing the production of the show right now. We’re gonna be talking about autism and the different challenges that go on within different cultures in our society, and talking about different cultural influences and how it affects how people view disabilities within their own culture and the different challenges that they face. We’ll be posting the exact time for next week in the next day or so. Do you have anything else, Tricia?

Tricia Kenney: That’s pretty much it; I hope everybody has a great weekend.

Sharon daVanport: We’ll talk to you guys later. Have a great weekend. Bye.

Tricia Kenney: Bye-bye.

[End]

Advertisements

One Response

Subscribe to comments with RSS.

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


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: