Other People's Words

Interview with Katharine Annear, AWN International Director

Posted in Uncategorized by Tera on September 30, 2010

This is a transcript of the Autism Women’s Network interview with Katharine Annear, AWN International Director.

[Music]

Sharon daVanport: Good day, everyone, and welcome to the special edition of AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and today is Monday, September 6, 2010. As I did mention, we are bringing you a special broadcast today with our AWN Inetrnational Director from Australia, Katharine Annear. We’re very excited to be able to welcome [her] as our guest today and to be able to bring to you this special interview, because Katharine has been visiting the US over the past couple of weeks, doing some very special things out West. She’s going to be talking to us about that and much more about the work she does in Australia. Joining me right now is co-host, Tricia Kenney. How are you doing today, Trish?

Tricia Kenney: Hi, Sharon. How are you?

Sharon daVanport: I’m well, thank you. How’s it going for you this morning?

Tricia Kenney: Really good. I’m so excited that we got the chance to do this interview. Like you said, we don’t really get to talk to people abroad very often, and it’s wonderful that we get this opportunity to hear what’s going on out there in the autistic population.

Sharon daVanport: That’s right. And to be able to have Katharine join us early on in the AWN as we’re still very much trying to grow and build our organization, it’s just been so wonderful to know that we have someone out there in Australia who’s able to guide us along the way, with all of her experience in the autism community. And aa we’re growing in the AWN, she can help guide us through not just international aspects of it, but even with the autistic population as it’s represented in Australia, to make for sure that the AWN is taking care of what we need to take care of as we grow. So let’s go ahead and bring Katharine on. Hello, Katharine.

Katharine Annear: Hello.

Tricia Kenney: Hi, Katharine.

Sharon daVanport: Hello. Welcome to AWN radio. We’re so excited to have you with us today.

Katharine Annear: Thank you very much. I’m very excited to be on the radio station and in the USA.

Sharon daVanport: I’d like for you to begin, Katharine, by letting everyone know what you’ve been doing here while you’ve been in the United States. You were invited to a very special event out west. It was in Oregon, correct?

Katharine Annear: Yes, that’s right. It was in Eugene, Oregon. I was invited back to a program called th Women’s Institute on Leadership and Disability. Normally, it’s a three-week program that is an intensive program for women with disabilities around the world to learn about leadership. It’s very experiential, so people are immersed in challenging experiences and learning experiences. And this is something I completed in 2008.

This year, I was invited back to the environment wild, as it’s called, as an alumna to share my experiences with the 2010 group of women going through. So in total, there were 25 alumnae returning to share experiences with 29 2010 participants. What we also did when we attended was to meet for the Gender Development and Disability Institute, where the 50 women from 42 countries met with international aid agencies, such as Mercy Corps, Trickle Up, WorldVision and Global Fund for Women, and USAid, in a four-day long conversation about how women with diaabilities can be included in international development projects.

Tricia Kenney: Wow.

Sharon daVanport: Wow.

Katharine Annear: That was held in a campsite, so there were approximately 100 people camping and having this amazing conversation about making sure that international development projects include women with disabilities.

Sharon daVanport: Wow.

Tricia Kenney: That is just so incredible.

Sharon daVanport: It really is. Now, you mentioned that it involved the conversation of gender development and encompassed the conversation to include 42 countries. So does that mean there were representatives there from 42 countries?

Katharine Annear: Yes, there were.

Sharon daVanport: Wow. Amazing!

Katharine Annear: 53 women from 42 different countries with a range of disabilities—ranging from physical to sensory, like hearing impairment and deafness and women who are blind; women affected by polio; women who are wheelchair-users. So a really big, wide range of women with disabilities, mostly from developing countries. A lot of women from South America, from African countries, from Asia and Southeast Asia, from the Middle East and some European countries, and countries like Kurdistan and Nepal. Interesting to meet a wide range of people.

Sharon daVanport: Wow.

Tricia Kenney: I can just imagine.

Sharon daVanport: I know!

Tricia Kenney: Was anybody videotaping any of this?

Katharine Annear: Actually, yes.

Sharon daVanport: Oh, wonderful!

Katharine Annear: The whole of it was videoed this year, in preparation, I think, for Mobility International’s thirtieth anniversary next year. Mobility International USA is an amazing organization, run by a woman called Susan Sygall, who started the organization 30 years ago. Susan was very much involved in a lot of the activism many years ago bringing about the opportunities that people with disabilities in America enjoy today. Susan and her staff at Mobility International—Cindy Lewis, in particular, her partner in crime as such is just amazing, in terms of what they do for people with disabilities in general, and particularly for women with disabilities.

Sharon daVanport: Wow. You said it was a four-day long conversation. I find that fascinating. Can you share with us some of the conversations? And not just the conversations, but help us understand maybe some of the conclusions and goals that the participants walked away with?

Katharine Annear: Well, I think that ultimately, with the GDDI—the Gender Development and Disability Institute—is a chance for people from those aid agencies to learn about what women are each doing in their countries. So each of the women that comes to Wild is already doing great activism, great work, great leadership in their country.

So they share with the aid agencies ideas for including women with disabilities: how to go about it, how to find the women, how to activate them, letting them know what women with disabilities want. And then the aid agencies are interested in including women with disabilities. They’re there to be part of the conversation, so that [they can?] take away ideas on how to include people with disabilities in their projects.

The majority of the people there have gone away with an undertaking to set up more programs for including people with disabilities—particularly women with disabilities—in their mainstream projects. It’s not about creating special projects for people with disabilities or women with disabilities. It’s actually saying: “Well, we’ve got these mainstream projects that [unknown]. How do we include women with disabilities in those projects?

Tricia Kenney: Right.

Katharine Annear: Because it’s no use setting up a special place. That doesn’t foster inclusion in the wider community. And if the community is developing and receiving aid from international organizations, it’s important that that aid money is inclusive of the whole population, rather than breaking it down into little separate parts and perhaps even maybe creating a sense of competition.

Sharon daVanport: Well, I can definitely understand, Katharine, why they were so excited to invite you back to this summit for disabilities. Your activism and all that you do in Australia is just remarkable, and I really am excited to talk to you about that today. In your bio, it’s pretty straightforward, but I really want you to be able to elaborate today on this show. You’re an artist, a writer, counselor, empath—so many things that you do, and you’re a female on the autism spectrum as well. So I don’t even know where to begin. [Laughter] There’s just so much.

Tricia Kenney: I think for those who don’t know very much about Katharine, maybe we could start about the time when you found out that you were autistic.

Katharine Annear: Okay. Well, when it occurred to me was probably about ten or 12 years ago. I’m going to be 37 this month, so it was probably in my early to mid-twenties that I did read a book. [Chuckles] I read Nobody Nowhere by Donna Williams and thought: “Ooh! This really could apply to me, this autism thing.”

Tricia Kenney: [Chuckles]

Katharine Annear: That’s after having gone through what you would say is not-so-desirable times in my life. Particularly in my late teens and early twenties, where I was diagnosed with a raft of different mental illnesses and disorders, and spent some time in institutions and taking different types of medications. I think at one stage there was along at least perhaps maybe seven different disorders that they thought that I might have. [Chuckles]

Tricia Kenney: Wow.

Katharine Annear: I [just?] see that, basically…it’s unfortunate that that kind of thing happens, but it’s fairly common for women with Asperger’s in particular to go through that path of misdiagnosis.

Tricia Kenney: Right.

Katharine Annear: But they were really grasping at straws. They didn’t know what to label me with, so they were like: “Oh, well, it’s a bit of this, it’s a bit of that, and a bit of this, and a bit of that.” It was a very confusing time for me, and obviously, people within the medical profession were also confused. [Chuckles] And it wasn’t until I actually went to university in my late twenties that I finally got confirmation that I was on the autism spectrum.

Tricia Kenney: And so were all the other diagnoses that you got throughout the time before that all just swept away? Or do you feel like any of those apply to you now?

Katharine Annear: Well, I think the majority of them were wiped away. I think that things like depression and anxiety, though, are very much part of being on the autism spectrum. So I think that, yes, I did experience depression and I experience anxiety, so they’re probably fairly valid ways to ascribe my experience. But the depression and the anxiety were as a result of not having a proper diagnosis of Asperger Syndrome.

Sharon daVanport: We hear that so much over at our AWN forum, the conversations going on, Katharine. I know you’ve been a huge part of a lot of those conversations, and we do hear that so much over there, don’t we? I read about it every day over there.

Many women, we seem to have one thing in common, even if those of us on the spectrum…We’re each individuals, so we’re going to be different and have different life experiences. However, the one commonality that tends to bond us all together is that I personally have yet to meet someone who was diagnosed as an adult that did not at some point have an experience of carrying a different diagnosis that was ultimately found to not be accurate [chuckles], after they’ve received their confirmation of being on the spectrum.

So it seems to be a common theme. It’s a thread that goes on through, like you said, particularly females on the spectrum. Maybe we could talk about a little bit with the work that you do in the autism community, and in particular, with females. Is that the reason that perhaps you gravitated towards particularly focusing with females on the spectrum? Because you understand that disparity there in our population?

Katharine Annear: Yeah. I think, inherent in my experience, there is an understanding of what women and girls go through. In my job, I have taken a particular focus on women and girls with Autism Spectrum Disorder, while working on programs for girls and women—setting them up and seeing them flourish, and sometimes setting them up and seeing roadblocks to their completion.

Sharon daVanport: [Chuckles] Right.

Katharine Annear: But that’s a matter of disability services, as such, in Australia. But I think it’s really important for girls and women to be acknowledged, and for their unique experiences to be acknowledged. And also, for people to understand that, particularly if you have a later-in-life diagnosis, with all that comes before it, that women really do experience other mental health issues because they have been through such an experience.

I often work with women in a counseling setting who really do show elements of having post-traumatic stress disorder from experiencing bullying and misdiagnosis and sometimes mistreatment in the medical and psychiatric arenas. So it’s really important to acknowledge that growing up on the autism spectrum undiagnosed can be a very traumatic experience.

Sharon daVanport: Right.

Katharine Annear: That doesn’t mean to say, though, that trauma can’t be effectively dealt with and that people can’t live rich, full and meaningful lives. They just have to go through a process of understanding and accepting what they’ve been through, and looking at setting a different path and learning new skills and coping skills and moving forward. And that’s essentially where I’m doing the counseling.

Sharon daVanport: For those who don’t know, if you could share with them what you do. What is your career?

Katharine Annear: My current job is working for the local autism association as a senior consultant for adult services. So that’s a mixture of service development work and working directly with clients who are all on the autism spectrum—men and women. So working directly with people on the autism spectrum in counseling, running support groups, doing post-diagnostic appointments.

When someone receives a diagnosis, they get an appointment after the diagnosis to help them cope with and understand what’s going on for them, and what services might be available to them. I guess one of the most exciting parts of my job, as well, is to run Company@ Autistic Theatre,which is a totally autism-led theater company. So that’s a bit about my job. [Chuckles] It’s fairly broad.

Tricia Kenney: I was going to ask: Are the diagnostic tools being used in Australia getting any better at figuring out that a woman is autistic, as opposed to maybe ten years ago? Are they coming around a little bit to realize the difference between males and females on the spectrum?

Katharine Annear: I think the [unknown] are standardized, and then mostly they’re standardized against men. It really still comes down to the individual clinician—their level of experience with women and girls on the autism spectrum. Thankfully, I guess, in the organization that I work with, we have clinicians with years of experience in diagnosing individuals, right from a very early age to much later in life, and of both genders.

So I think that really helps to have experienced clinicians with a length of time behind them, in terms of who they’ve seen, for them to be able to differentiate and make an accurate diagnosis. I think that’s really, really important, the [unknown] of diagnosis. The [unknown] are obviously not perfect, [unknown] when it comes to protecting women on the autism spectrum. But the [unknown] is somewhat useless, unless you have an experienced clinician who understands the autism spectrum and the many ways it can present in individuals across the roster.

Sharon daVanport: Right.

Tricia Kenney: And what about adult services there in your area? I know here in the United States, people are starting to bring up the question, but in most areas there’s little to nothing as far as adult services—male or female? Do you find that it’s a little bit more progress there, or are you in the same boat?

Katharine Annear: We can’t say that there’s nothing, because there is something. But I would say it would be little. [Chuckles]

Tricia Kenney: Yeah.

Katharine Annear: For example, my organization has almost 5,000 individuals registered for services, so that’s a lot of people.

Tricia Kenney: Wow. Yeah. [Chuckles]

Katharine Annear: And there’s a percentage of those that are adults—perhaps about 1100 of those—but directly we get to see maybe 120 or so of those a year. So that’s the disparity that you’re looking at.

Sharon daVanport: Wow. Yeah.

Katharine Annear: Obviously, that’s direct service, as in: We see the people and interact with them. We do a lot of other stuff that involves awareness-raising and getting out into the community and working with people, so that they understand the autism spectrum more clearly. I guess that affects a lot more people. The more aware the community is, the more easily people are accommodated.

However, yes, there is a lack of services. Particularly, I conducted a survey last year of adults in my state in South Australia, and the majority of people were looking for a service in the social area. So social connectedness, mentoring, befriending programs—that’s what they’re looking for. The majority of people have an unmet need in that area.

So people…We’re looking at people who wanted to receive the service and were getting the service was probably about between five and 11 percent were receiving those kind of friendship and social skill training type services. But around 55 percent actually wanted to receive those services. So there’s a big gap.

Sharon daVanport: Okay.

Tricia Kenney: Yeah.

Katharine Annear: And employment is the other area where people feel they need assistance.

Sharon daVanport: I find it interesting that you work with a community theater? Is that correct? Can you tell us about the work that you do with them?

Katharine Annear: Well, Company@ is a theater company that’s recently launched in the form of Company@. But it’s actually a group of people that informally and formally have been running for about 15 years. So a group of individuals got together because they were interested in the television show Red Dwarf, and they waned to read scripts of Red Dwarf, and a group that was interested in drama and performance. They conducted quite a few performances at local festivals. They continued on to have a fairly strong social element of learning social skills through theater and through role-play, and that’s something they continue to this day.

But we also thought that we would launch an ensemble of people who were primarily interested in acting and producing work that can go out into the community. At the moment, the focus of that work is getting across the lived experience of the autism spectrum. It could change over time, and we could do work not about autism at all. But at the moment, as a young theater company, we’re exploring that idea of everyone being on the autism spectrum, and getting across that lived experience of autism.

There are 12 ensemble members. All of them have a diagnosis of autism or Asperger Syndrome, and the artistic director is also on the autism spectrum, and [unknown] the manager is on the autism spectrum. We have a company mentor who is neurotypical and a support person who’s also a dance therapist who’s neurotypical. So predominantly autistic-run and -led.

Sharon daVanport: Okay.

Tricia Kenney: That sounds so fun. I’m sure everybody has a blast doing that.

Katharine Annear: [Chuckles] They do; they do. Recently, we’ve launched from YouTube a promotional clip about the theater company. [Unknown] before 10 minutes, so if people are interested, I’m sure we can put the link up somewhere so people can find out. So check that out, and find out a little bit more in depth about wht it is we do and what we aspire to do. I think everyone in the company aspires to go global. [Laughter]

Sharon daVanport: Well, you just [in] the past couple of years, the buzz in the autism community, especially among parents. I’ve noticed the increase in parents have been that getting your children into some kind of performing arts: whether it’s dance, music, theater, they are finding that it has just been wonderful for their children on the spectrum.

Katharine Annear: Yeah.

Sharon daVanport: And I just think it’s wonderful that you guys are really taking a focus on that. There’s something to that, Katharine.

Katharine Annear: Well, it is very important. Next year, we’re combining together with Restless Dance, which is an integrated dance company in South Australia that’s been running for 20 years. We’re combining with that company to put on music and movement classes for eight to 18 year olds on the autism spectrum.

Tricia Kenney: Wow. That’s awesome.x

Katharine Annear: That’s an exciting project, because it’s a partnership with another organization and some very talented people. We’re very excited to offer opportunities to younger people, too, so that they can get that experience. I think we’re lucky in my state to have a really strong disability arts community, and lucky enough, also, to even have a dedicated fund to disability arts.

Tricia Kenney: Yeah. That’s huge, and I know that’s lacking in so many areas. But it’s not like it could not be brought up in communities, to start trying to gear some of the funding to go towards things like that. Because it is such a great experience.

When I was in drama in junior high, I absolutely loved it. I was a little too shy to go for the lead role [chuckles], but it was still a great experience. You get to put on costumes and be involved in this whole big creation, and it’s a really fun experience. Plus, you get to bond with all the people that you’re working with.

Katharine Annear: Yes. And I think people often underestimate the arts and say: “Oh, they’re the icing on the cake. They’re the last thing we’ll fund.” But clearly, the benefits of participating in the arts really go beyond just what you see. The opportunities for personal development and skill development and the development of interpersonal skills and [unknown] skills, confidence…

Tricia Kenney: Right. Self-esteem, everything. Yes.

Katharine Annear: How to hold yourself; how to project yourself. All of those things we see. Some of the transformations in people doing theater are quite amazing. It is a vehicle for personal change and change in the community. At the moment we are also doing a show in high schools. So we have a small group of actors going into schools, performing and working with the students to change their perception of the autism spectrum. So it can be a great vehicle.

Tricia Kenney: That is just awesome.

Sharon daVanport: You said you have a small group going into schools. Are they focusing particularly on working with students on the spectrum in these schools? Or are they going in there as people on the spectrum in the performing arts?

Katharine Annear: [unknown] there are a group of people on the spectrum presenting a theater piece and working with neurotypical students. We’re working with a whole student population, I’m sure, that there may be some students on the spectrum in the school. But it’s actually to raise awareness of the autism spectrum, and how people may present and what their strengths and weaknesses are; what some of their lived experiences are.

So students get to understand the autism spectrum and to empathize with the people on the autism spectrum. One of the aims of the show is to increase awareness and to just decrease the bullying that occurs within school, so that people don’t see the person on the autism spectrum as a target, but rather begin to understand where they’re coming from and have a bit of empathy and have their eyes opened to the experience.

I’ve watched some of the students participate in this experience, and they’ve really come to understand what it’s like. We get them to participate in the show, so they have to take the role of a bully, for example, in front of the whole student population and get to feel what it’s like. And they intensely dislike that. They run away from it. They say: “I don’t want to do that! I don’t want to do that! I don’t want to pick on this person! It’s horrible! It’s horrible!”

Sharon daVanport: Right. Well, you brought up a very good topic and this is an opportunity to have a great segue into talking about bullying and how important it is to reach younger people about this. When you don’t, then you end up experiencing situations even in adulthood with other adults who are continuing on with those kinds of behaviors. It’s very traumatizing. I know that many of us on the spectrum, even as adults, are being attacked and targeted by other adults. It’s very traumatizing to have to deal with this. So let’s talk a little bit about that, and maybe on a personal level, to get to know Katharine a little bit better. What have been your personal experiences with bullying, Katharine, throughout your life?

Katharine Annear: Well, I think some of it’s been fairly overt in being called names and being pushed around and things like that in school. And some of it’s very subtle, in terms of exclusion and not being included to the same level as other people in things.

Sharon daVanport: Right.

Katharine Annear: It was directly being called names, and sometimes by people in authority. Sometimes that may have even been done in jest or as a joke, but it tends to have a layered effect when people are really getting stuck into you for your differences.

Tricia Kenney: Right. I’ve even experienced a lot of passive-aggressive type of encounters with people. As soon as they know that you’re autistic, all of the sudden, they start using smaller words or start talking more slowly or discounting your opinions or your input in a converstion. Acting like: “Well, you’re autistic, so you probably don’t get the full scope of what we’re trying to do.” Like somehow you being autistic immediately [unknown] to being a great thinker in the world. [Chuckles] And all the sudden, your once brilliant ideas are now not so.

Katharine Annear: And I think some people in the neurotypical arena don’t understand the autistic way of thinking. I think there’s a lot of misunderstanding between the two styles of thinking. Some people genuinely just are coming from such a neurotypical place that they don’t understand how to experience autistic thinking, and perhaps need to have an education around that.

Then there are other people who deliberately exploit the fact that they are adept at neurotypical thinking and that you have some weaknesses in that area. They will bamboozle you and they will exploit your lack of understanding of social situations for their gain. And that’s what I find most disturbing, is that they see a weakness or they see a hole or gap in your understanding and they’ll exploit it to their gain. I think that’s the worst kind of bullying.

Some of it comes from a completel lack of understanding and I hope that those kinds of people can be educated to understand.

Tricia Kenney: Right.

Katharine Annear: And then there are a percentage of people who are actually quite malicious and see a weakness and exploit that weakness for their gain. That’s really sad, I think.

Sharon daVanport: Right.

Tricia Kenney: Right. It is.

Katharine Annear: Those people exist, and they’ll do that to anyone with any kind of weakness. [It doesn’t] just have to be that you’re on the autism spectrum; you could be part of some other marginalized group. And those people exist everywhere, too, to exploit people from marginalized groups.

Sharon daVanport: Right. That’s what I find empowering. I was going to ask you about this, Katharine, about [how] getting a proper and correct diagnosis can be very empowering. I’ve heard a few people say that it didn’t open up as many doors; maybe they didn’t have as positive an experience. However, I’m finding more and more people that I talk to, especially females diagnosed later3 in their lives, it’s been for the most part very positive and empowering.

I can only speak for myself and from the conversations I’ve had with others who share that opinion that the empowering aspect comes from having that knowledge of understanding how you process information, and it gives you a leg up on how you can approach conversations, other people, and how to explore different opportunities with having an understanding of your complete mindset. I’ve found that very empowering personally. Is it still something that you also find that has been to your advantage?

Katharine Annear: I think it’s incredibly empowring. I think that, if you compare my life before and after knowledge of the autism spectrum, I think it’s significantly different. The insight that I’ve gained into myself is phenomenal. I think that the powr of personal [unknown] finding out that I was on the autism spectrum has just been quite amazing. I think that the diagnosis is really, really, really important for me.

One of the questions that I’m asked frequently in my work by parents, in particular, is: When should we tell our child? Should we tell our child first, and if so, when? I always give the piece of advice of, coming from the experience myself and knowing people on the autism spectrum, is that knowledge is power. And the sooner the person understands they’re different and how to cope with it, the better.

And I think that you can’t underestimate people anyway. Most children on the autism spectrum know they’re different, because they get messages from people that they are different. They feel different, and there’s nothing worse than growing up knowing you’re different but not knowing why. And so answering that “why?” question is really, really important. And then people can go: “Okay”—

Sharon daVanport: Sure.

Katharine Annear: —and can begin to understand that and accept that and live their life in the full knowledge of having that condition. Whereas if you don’t know, things can become very confusing for young people in particular.

Sharon daVanport: Right.

Katharine Annear: Not knowing can be a very confusing experience. I think if you speak to most adults on the autism spectrum, they would’ve preferred to know as early as possible. I always tell parents that if you speak to adults now, most adults say the earlier they know, the better off they are.

They still have to go through some of the really difficult periods of life like adoledcence and not fitting in anyway and all of that sort of thing. But having the knowledge that there’s a reason why you are the way you are is much more empowering. And even if children and, particularly, teenagers get that initially, there’s lots of work that can be done to move from that state of denial to a state of acceptance.

Sharon daVanport: Right. Katharine, what would you say to the parents listening who might have just recently received a diagnosis or who have been living with a child who has a much different autism experience than, say, you do personally? A parent who looks upon you and says: “Well, good for you, Katharine. You can speak. You can hold a job.” For lack of a better phrase, “You can use the toilet.” They’re comparing their child’s autism experience and the different challenges that their child may have with what your experiencing.

And then you have us adults who are vocal and can speak. We have come upon this kind of criticism. What do you say, Katharine? How do you explain that and engage these parents in these conversations?

Katharine Annear: Well, I’m not representative of all experiences on the autism spectrum. I’m only representative of me. The advocacy work I do is to benefit everyone on the autism spectrum, but I don’t claim to be representative of everyone. That’s an impossible task.

Sharon daVanport: Right.

Katharine Annear: What I do say is that because I have an autism spectrum disorder, I have a window into what it’s like to experience the autism spectrum. I don’t experience it the way other people experience it. I also do reinforce to people, no matter where their child is on the spectrum or where their loved one is on the spectrum, is that learning is a lifelong process. So never underestimate the power of teaching.

When you have a small child with a developmental disability, you have a small child with a developmental disability. They have years and years of potential ahead of them. So they may not now have the behaviors that are functioal, in terms of toilet training and speech and communication. It doesn’t mean that they won’t continue to learn in the future. They may not attain a skill level that you may have expected; they may not attain a skill level that is like mine, but that’s not the point. The point is not to give up hope—

Sharon daVanport: True.

Katharine Annear: —and not to stop teaching. Because I’ve seen people learn things that are quite amazing and change people’s quality of life. These people are 30 years old or more. I’ll give you one example of a lady that I have knowledge of, who has autism, epilepsy an cognitive disability, so intellectual disability. She’s a person that requires 24-hour care and supervision.

But in her early 30s—she’s about the same age as me—she learned how to recognize her reflection in a mirror. Developmentally, that’s a task for very, very young children. But the way that that’s opened up her life is quite amazing. To recognize yourself in the mirror means that you’re developing a concept of self. And if you slowly develop a concept of self, you can develop a concept of other.

The other important thing about recognizing yourself in the mirror is that you start to recognize your body and distinct parts of your body. The way this person’s life has changed is that she now is able to locate pain in her body, whereas she wasn’t able to do that before.

Tricia Kenney: Wow.

Katharine Annear: So she could become very, very distressed and not be able to locate that pain in her body. But by learning to recognize her reflection, she’s improved her body awareness, and that’s changed her entire quality of life. And that happened in 30s. So all I say is: Never give up hope. The brain makes links in amazing ways, and it continues to grow and people continue to learn. People will learn new skills, given the opportunity, if that makes sense.

Sharon daVanport: Right. Oh, it does; oh, it does. Yeah.

Katharine Annear: Learning is a lifelong experience, and to never give up, and to [unknown] to learn and immersing them in experiences so that they can learn. And you may persist with teaching for years and years, and feel as though you’re up against a brick wall. And then [unknown] spontaneously erupt. Something that you were teaching two years ago and got really, really frustrated with, will suddenly appear.

Tricia Kenney: Right.

Katharine Annear: That’s something we don’t undertand about the brain or the way autism works, is that you can teach and teach and teach a skill until it seems to no avail, and then two years later that spontaneous skill spontaneously occurs.

Sharon daVanport: Right. I’ve seen that. [Chuckles]

Katharine Annear: [Unknown] to teach and treat young people with autism with unconditional positive regard. There has to be that climate of just unconditional positive regard, so that when you’re talking about autism in your family home, it’s not a source of exasperation or a source of frustration of fear. It’s something you have to live with, but when you talk to your child about it, you have to be positive. The language has to remain positive around autism, even if you’re feeling frustrated. Even if you think they won’t understand.

Sharon daVanport: Right.

Tricia Kenney: Right. That’s a huge, huge thing.

Sharon daVanport: It is; it really is. I think that’s excellent guidance there, Katharine, and I know that it’s ongoing as a parent. Trish and I talk about this all the time as mothers. We’re not only on the spectrum, but we’re parenting children on the spectrum. So it’s ongoing. You have to find ways to remain positive and to keep your language moving forward in a positive way, even, like you said, when it’s just everyday happenings around your home. It’s so important; it makes a huge difference. I’ve seen that personally in my own experience.

Tricia Kenney: I think it’s a little bit easier in the respect of when you are an autistic family unit. You look at things a little bit differently—certain things that your child may be doing, you don’t freak out and go: “Oh, my God! They just did this! And what is wrong with them that they’re doing this?” and such and such. Where you might be like: “Okay, he’s trying to figure out something.” You look at it a different way.

Katharine Annear: You have a different lens to look at it through. And I think that people, even so-called neurotypicals parents (and let’s face it; the majority of parents are [Chuckles])…But I’ve seen parents who are incredibly attuned to their children’s behavior, and understsnd the function of their children’s behavior; see it as a learning experience; don’t become frustrated by it. I think that that’s an important place to come from, is try to understand how your child is attempting to understand the world.

Tricia Kenney: Right.

Katharine Annear: And people have much greater success when they try and put themselves in their child’s shoes and say: “Why is he or she doing this? What are they trying to understand? What are they trying to get here? What’s going on for them?” Not how it looks on the outside. It’s about what’s going on for them. What do they need? What do they want? What can’t they get?

Tricia Kenney: Exactly. That’s the thing about childhood. It’s all experiencing the world. It’s all about learning. They’re trying to get a grasp on everything that they encounter and then also manipulate it, or see how they can, or if they can’t manipulate those experiences. I think it’s really interesting to watch kids, just because of the way that their brain is just churning. [Chuckles]

Katharine Annear: Yeah, yeah.

Sharon daVanport: Right.

Katharine Annear: And I think no matter where someone is on the spectrum, that’s still happening. There are just layers and layers of frustration if a child can’t communicate, or if a child has behaviors that really interrupt the way they experience the world. There are layers and layers of frustration. But there’s still a child in there attempting to understand and communicate, and that’s what we really have to acknowledge.

Tricia Kenney: Um-hm. And I think a lot of it comes from the diagnosis process, where parents all the sudden feel very separate from their children, and they let go of that natural instinct that they know that child better than anyone on the planet. Where instead now: “Oh, they’ve got something that I don’t understand.”

Katharine Annear: Yeah. And a lot of frustration is telling them what they should and shouldn’t do, and the big wide Internet. [Chuckles] We run a telephone line where I work, and we often get people calling. And it’s an information line, but they call quite distressed, saying: “What do I do? There’s thousands and thousands of treatments and people telling me what I should do,” and all this sort of thing. And I say: “Ah. So you’ve Googled ‘autism.’

[Laughter]

Sharon daVanport: “Googled ‘autism.’ [Laughter]

Katharine Annear: “First thing, get off the Internet.”

[Laughter]

Sharon daVanport: Get off Google! Don’t Google “autism”! Oh, how true that is! Do not Google “autism” as your first experience. Oh, my goodness! It’s a landmine. [Laughter]

Katharine Annear: Overwhelming and distressing and you know what knowledge is reliable, what to trust. The best thing to do is to go to somewhere locally to try and find out information. Finding a support group is really, really important, whether you’re on the spectrum or whether your’e a parent. Learn from other people’s experiences.

Trust the people in your own community—the people you know—rather than the machine that is the Internet. People experience all sorts of reactions when there’s a diagnosis.

Tricia Kenney: Yeah.

Katharine Annear: They experience grief and loss, and they experience denial. They experience anger, and all of those spaces are not a good space to come from if you’re trying to make a judgement about what to do next.

Tricia Kenney: Yeah.

Sharon daVanport: Right.

Katharine Annear: So you need the support of your community to deal with all those emotions and feelings. Even if you’re an individual on the spectrum, you have those emotions and experiences.

Sharon daVanport: Right. You know, Katharine, I would love to take this opportunity now that you’re talking about just sharing those experiences and getting into the community, I’d like for us to talk a little bit about a goal we have at AWN that you’ve been working really hard on: trying to get togther and e-mentoring program that we really are looking forward to, eventually, when it’s all put together. But it takes a while to get this, and I’d like for you to explain to our listeners what we can look forward to.

And I’d like to tell everyone it is going to take a while to put together, because not only do we have to build an e-maentoring base and mentors, and there’s the training that you’re going to be putting people through to be mentors. But I would love to chat a little bit about your vision of how the AWN e-mentoring is going to go, because you’re going to be the one spearheading all of this. And the experience that you have in mentoring is wonderful, and I’d like for you to speak on mentoring at this point. Can you tell everyone about your goal for the e-mentoring?

Katharine Annear: Well, I think that’s really important, that we as a community get to share in our expertise with each other. People who have, in a way, been there, done that get to share their experiences with other people who have [been] going through similar experiences. And that’s the basis of mentoring. It’s a more experienced person offering support to a less experienced person.

And I think it’s important when you’re talking about a peer mentoring program like this one, is that you don’t have to have a lot of experience and you don’t have to feel competent in every area of life to help someone else go through something.

Sharon daVanport: Right.

Katharine Annear: So I think there’s been a lot of enquiries initially about mentoring, saying: “I’d really love to be mentored, because I don’t think I’ve got a lot to offer to anyone else.” But what I’ve seen of the AWN forum and the over 500 members there is now, and 5,000 posts or something phenomenal like that, that there are many, many experienced women out there with a lot to offer each other.

Sharon daVanport: Right.

Katharine Annear: So, the premise is that you need to come from a space where, as a mentor, is that you do have something to offer, however small it might be. And then if you’re wishing to be a mentee, then that’s an experience of being mentored by a more experienced person, but in the future, you may be able to become a mentor.

So what I’m looking at is to form a dynamic community where there are mentors that are trained, but people aren’t locked into mentoring about one thing, or they’re not locked into “I’m your mentor and you’re my mentee.” Not one-on-one matching, as such: it’s more a space where people can go and there are mentors and mentees that can interact and help each other out.

So that ideally, it will happen on the forum; there’ll be a closed space where people can log in and interact with each other. And you can do that via the forum thread. So if someone asks a question, more than one mentor could give advice on that question. If you had a more private question, you could use the “Message” function on the site to message someone and ask for advice.

But it’s not about setting up these private, isolated e-mail exchanges, because people in that sense of e-mentoring, where it’s just one person helping out another via e-mail, it can become very isolating. Whereas if you do it as a group, you get a sense of everyone’s helping each other out, and you don’t feel like you’re doing it in isolation. And you can also call on a more experienced mentor or a moderator as such to give you some backup and advice.

Tricia Kenney: Right. So if I went in there and said: “I’m having difficulty dealing with anxiety. Anybody have any suggestions?” That way I could get 30 different people giving me what works for them or what they’ve tried or what they’ve heard about or whatever, and that way I can pick and choose the things that I think would work best for my situation.

Katharine Annear: Yes, yes. And I think it’s important that some of those people on that mentoring forum are trained in mentoring so that they understand the types of information to give, and what’s the best way to put across information, and to not become involved in relationships that are too personal or too one-on-one or too demanding, so that you feel like they’re taking over your life. That’s not the idea of mentoring. The idea of mentoring is that you give a certain amount of time every month, but you don’t have to give any more, so that you don’t feel overburdened by the relationship.

Tricia Kenney: Right.

Katharine Annear: Effectively, someone could go on there and get advice from several different mentors. And then if they had another question they wanted to follow up, then they might send that mentor a private message to say: “Can you elaborate more?” or “Can you explain more about what you meant by such-and-such?”

Tricia Kenney: Um-hm.

Katharine Annear: But the idea is that it’s a fairly transparent process as well, and that’s important for supervision and in terms of getting the process going. It will essentially be a closed forum, so that only people who are signed up for the program have mentors and mentees [and] can go in there. But once they’re in there, then there is a level of transparency. At any time, someone can contact a supervisor and say: “Well, I’m a bit out of my depth here. Can I pass it on to someone else? Or can you give me a bit of advice of how to deal with this problem or this person?”

Tricia Kenney: What’s really nice about this, too, now is that it’s somewhere for women to go. There’s such an expansive space betweeen so many of us, and it’s not always easy to find somebody closeby in real life, so to speak. And I thin it’s nice that there is this place, which is one of the big reasons why we started AWN. We feel like we need each other to lean on and to discuss things with and go over the daily routine of life as we experience it with others who would understand.

Katharine Annear: I think that’s an incredibly important aspect of AWN and of mentoring. You can go to a place even if it’s virtual and be understood. And almost not have to explain in as many words how you’re feeling, because people will just understand.

Tricia Kenney: Um-hm.

Sharon daVanport: That really is an amazing experience, isn’t it? To be able to just have the feeling and knowledge that you don’t have to justify or explain yourself. Someone just gets you. [Chuckles] It’s an amazing experience. It really is.

Katharine Annear: Yeah. I don’t think that can be underestimated.

Sharon daVanport: Absolutely. Right. Well, I’m just so looking forward. I’ll be contacting you, too, so that we can get an update. I do believe you’re correct. A lot of people have made contact feeling like maybe they would like to be a mentee, hesitant to be a mentor. I like your explanation, Katharine. I think that was really, really good.

Katharine Annear: I’ve seen—I’ve read the entire forum. I know there are women out there with a lot to offer.

[Laughter]

Tricia Kenney: That’s a lot of reading. [Laughter]

Sharon daVanport: Yeah. All 6,000 posts now.

Katharine Annear: I try to keep up with the majority, although I have to say, I don’t keep up with the laat three words in the game.

[Laughter]

When there are posts that are discussing things. There’s an amazing amount of knowledge out there in our community.

Sharon daVanport: Isn’t there? Yeah.

Katharine Annear: [unknown] sharing it. There is mentoring informally already happening on the AWN site, and in the AWN community.

Sharon daVanport: That’s exactly what everyone’s doing, isn’t it, with one another? Someone makes a comment, and yeah.

Katharine Annear: We’re making it a little bit more formal so that people can feel supported when they help each other out, and that space is what we’re trying to do.

Sharon daVanport: Right. Nice explanation. Well, you’re leaving the states today, so I wanted to give you an opportunity to do a couple things before we close. I first want you to be able to let everyone know your contact information if they’d like to get a hold of you. Do you have a website of information?

Katharine Annear: My blog is sorely neglected, but—

Sharon daVanport: Fully neglected. [Laughter] That’s okay. You gave a disclaimer.

Katharine Annear: My blog site is www.autap.com.

Sharon daVanport: There’s so many .coms, .orgs, .nets out there, right?

Katharine Annear: Let me just check.

[Laughter]

Now, I’m using hotel Internet, and it’s very slow.

Sharon daVanport: [sarcastically] Oh, isn’t that lovely? I can go and check really quick on your site.

Katharine Annear: It is autap.com The last post is April the 13th, 2010. I promise I’ll update it.

Sharon daVanport: It really is a good, good place to get information, though, Katharine. Yes, it’s good to put it out there.

Katharine Annear: I’ve got my bio. There’s some autobiographic writing. There’s some poetry. You can also find me on Facebook There’s two of me, as in I have two different profiles.

[Laughter]

One is one that I use for my work purposes, as in connecting with people who I have a counselor-client relationship with. That’s important that there are boundaries there. So there’s one that is that, but if you want to be my Facebook friend, then if you look for Katharine Elisabeth Annear, then you find me. And I find out what’s going on for me on Facebook and things, and I will tend to update my blog, and you can message me through Facebook as well.

Also, I have the Autism Women’s Network e-mail address, which is katharine AT autismwomensnetwork DOT org.

Tricia Kenney: And you can find Katharine on the forums there quite often.

[Laughter]

Sharon daVanport: Right. And what exciting things do you have to look forward to when you get back to Australia? Are you going to jump right back into work, or—?

Katharine Annear: Well, I’m not flying back to Australia tonight.

Sharon daVanport: Oh, that’s right! You’re going to New Zealand first. That’s right, New Zealand.

Katharine Annear: I’m going to New Zealand for a week, and I’m to present at the autism conference in New Zealand.

Tricia Kenney: Wonderful.

Sharon daVanport: Oh, how wonderful.

Katharine Annear: [Unknown] Company@ Autistic Theatre at the autism conference in New Zealand.

Sharon daVanport: Very nice. And when is that going to be?

Katharine Annear: And we have Kiwi friends meeting us, fantastic people on the autism spectrum there. A wonderful lady called Ava Ruth Baker, who is a GP, a general practitioner, a medical practitioner who has Asperger’s Syndrome. She and I have met at several conferences now, including in South Africa and Australia, and I’m very much looking forward to meeting her. She has a wealth of knowledge around people with autism spectrum disorders in helping professions, so [unknown] medical practitioners, counselors, health workers, and [people? able?] to work in those professions [unknown].

Sharon daVanport: What topic are you presenting, Katharine, at the New Zealand conference?

Katharine Annear: I’m presenting on Company@, the autistic theatre, and how to use theatre as a tool for social change and building community culture.

Tricia Kenney: Wonderful.

Sharon daVanport: Very nice, Katharine. Now, please tell our friends in New Zealand that AWN says hello, and give our kind regards to them. It’s just been so nice, Katharine, to have you on as our guest. I’m really excited that we were able to get this interview with you before you hopped on your plane tonight and you’re off to New Zealand. Well, you’re just quite the world traveler over the past month, aren’t you?

Katharine Annear: Oh, yes. I am looking forward to [getting?] home. I’ve had a few moments of missing home, especially when you’re traveling alone.

Sharon daVanport: Oh, yeah.

Tricia Kenney: Yeah.

Katharine Annear: I’m lucky enough to be…In New Zealand I’ll be staying with some friends.

Sharon daVanport: Oh, good.

Katharine Annear: And a very dear friend is also presenting at the conference, and we’ve been friends since school days.

Sharon daVanport: All right. So you’ll feel a bit more at home.

Katharine Annear: [Unknown] presentation. Ironically, we worked in the same organization, but it’ll be nice to catch up with her, a friendly face.

Sharon daVanport: Right. You’ll be a little bit closer to home and feel a bit more at home, probably. [Laughter] But we hope you’ve enjoyed your stay here in the states.

Katharine Annear: Oh, I have. [I’ll?] come back to the states, I’m sure. I’ve seen only three states, and there’s [two more?] I know. [Laughter]

Sharon daVanport: There are. I’m just so excited to, again, Katharine, have you be able to share with us just all the information that you did today.

Tricia Kenney: I think it was just a real treat for us, and I’m so grateful that you were able to be here with us.

Katharine Annear: It’s been wonderful, and I was very, very pleased to meet Lori the web developer and Karen, and they hosted me for two nights.

Tricia Kenney: Oh, nice.

Katharine Annear: So I had fun with them, and seeing Oakland [unknown], and doing some big, long walks with Lori. One day we walked around three and a half miles around the lake at Oakland. That was [unknown].

Sharon daVanport: I saw the pictures—they were so pretty. Of the lake. Is that the lake that you were talking about that you took a walk around? It’s so pretty. How nice to be able to visit with friends. Hopefully, when you get back to the states, we’re definitely going to have to meet in person. Get a bigger group together this next time. Yes, it’d be awesome, Katharine. I just really am looking forward to that.

Katharine Annear: It will definitely happen.

Sharon daVanport: Okay. All right. Well, I think that’s going to do it for us, and I’m going to give you a call this afternoon, Katharine, before you get on that plane. So I’ll be catching up with you in just a little bit and following up after the interview. But thank you so much for being our guest today. Okay?

Katharine Annear: All right.

Tricia Kenney: Thank you, and please do come back soon. I think you have so much to offer, and it really is such an honor for us to be able to have you doing the work that you do for AWN.

Katharine Annear: My pleasure.

Sharon daVanport: Okay. All right. Thank you, Katharine. You have a safe trip.

Katharine Annear: [Unknown]

Sharon daVanport: Okay. Bye-bye.

Katharine Annear: Bye-bye.

[Katharine hangs up]

Sharon daVanport: Well, that’s going to do it for us today on this special edition of AWN radio, the Autism Women’s Network on Blogtalk. Everyone have a very safe holiday today here in the United States. It is Labor Day.

Tricia Kenney: And if you have a moment in your day, please go to our website where you can find information on how to vote for us this month. We are in the Pepsi Grant contest again this month, and we’re depending on your votes.

Sharon daVanport: Right. We’re hoping to be able to host some autism workshops that are specifc to female vulnerabilities, the qualities that are unique to females on the spectrum. So we appreciate your vote. You can also vote for us on Facebook. You can go to www.refresheverything.com/awn and cast your vote for us over on the Pepsi page. We would really appreciate that.

So until next week when we will be having guest Rich Everts, the executive producer and director of The United States of Autism movie; he’ll be our guest next week on our regular time on Saturday. So we will until then wish everyone a wonderful week. Thank you for joining us here on AWN radio. Goodbye.

Tricia Kenney: Bye-bye.

[End]

Advertisements

One Response

Subscribe to comments with RSS.

  1. AUTAP » Blog Archive » Happenings said, on November 2, 2010 at 10:40 am

    […] to do an interview with the Autism Women’s Network, the transcript of which can be found here. This interview explores a range of things including WILD and perspectives on the autism […]


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: