Barb Cook

Episode 3 November 13, 2020 00:20:21
Barb Cook
Choice and Control
Barb Cook
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Show Notes

In this episode we meet Barb Cook, a regional Queensland-based writer, academic, developmental educator and autism advocate.

Barb has autism, ADHD and dyslexia, but like many of her generation wasn't diagnosed until well into adulthood.  She says the diagnosis was a relief, and a chance for a whole new start.  Barb's since achieved her Master of Autism (Education) at the University of Wollongong, focussing on the critically important issues of education and employment for the neurodiverse community.

Barb is now a prolific author and speaker, and has built Autistic-led initiatives such as Spectrum Women Magazine and Bikers for Autism Australia.  She's a Community Council Member of Autistic Adults and other Stakeholders Engaged Together, which provides advice and input into health research affecting people on the spectrum, and an independent lived experience peer reviewer of the Autism in Adulthood academic journal.

If you have a story you think we should feature on Choice and Control, please contact our enquiries line on 1300 999 636, or email [email protected]

Please note due to COVID-19 social distancing requirements, this episode was recorded via Zoom.

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Episode Transcript

Speaker 0 00:00:05 Choice and control a podcast, celebrating people with disability in this season, we're talking about access inclusion and the national disability insurance game. This podcast series is brought to you by carers Queensland and dis local area coordination partner in the community. Speaker 1 00:00:23 Hi, I'm Jody Vander lettering for author academic and developmental educator. Bob cook life really did begin at 40 because that's the age she was diagnosed with autism ADHD and phonological dyslexia. Today. Her work focuses on supporting other adults on the spectrum to reach their potential in life, career and self-development, but it was a long and fairly winding road to get there. <inaudible> Speaker 2 00:00:49 A very interesting one. I was very fortunate in the sense of I was left to my own devices. In that sense, I had opportunity to grow in my own environment. So I would do things like would spent a lot of time in my own head space or would be fascinated by Roxanne. Like, God, I wish we had a drive by where I sit down. I dislike so interested in that sort of stuff. Um, my parents, they were very accepting of who I was, so they let me do things my own way. And I was very, very much caught up in my own world. Um, as a young Bob and as I got older, things started to change a little as I got into sort of like the high school environment. Um, I started to really realize I didn't fit in with the rest of the people that my peers around me, everybody else was sort of like getting interested in boys and doing things like that. Speaker 2 00:01:45 But I was still interested in my rocks and collecting all of the collected key rings. So I have lots of key rings, um, and stance and collecting Barbie dolls. Uh, I was very much into that sort of stuff, too. Not to play with Longy. Mine was a sense of having them in the air on display, check them out in their boxes, pull out ones, put them back in. And so they basically stayed in metal tombs for the rest of their lives on my shelf. Um, so these sort of things started to become very apparent as well. Uh, other interesting things to me, young Bob has to have things, everything in their place. So I would have at the end of my bed, this lovely vinyl bed beanbag with all my stuff, toys, every toy had its place and had to stay there. If anyone went missing or got moved and put in the wrong place, not happy, Bob, I would have a meltdown. I would get upset if anybody else touched them. And it was the same as a lot of different things. Um, I was very, um, needed everything in its place because it gives me a sense of sort of like control of my environment, not knowing where everything was. Um, so anything that was unexpected really, really stressed me out. I think getting older, coming Speaker 1 00:03:00 Into adulthood. What was the process of getting diagnosed and finding out you were on the autism spectrum? Speaker 2 00:03:07 Well, the process of getting diagnosed, I didn't get to that point until I was heading up to 40. Uh, I'd had a lot of struggles for my life with, um, anxiety and depression, um, and feeling because I couldn't fit into the society that was around me. So I had a lot of, um, jobs that I would be at for short term things like doing the work itself would be great. I had no problem with that. Always has commended on how well I would do a job, but it was the people that I actually struggled enormously with the social dynamics of, Oh, the, um, chit chat about, Oh, we're going down to the pub or have you heard of that? So-and-so has done this, never interested. They, to me, it was a case of we here, we've got to do the job, we need to do this. Speaker 2 00:03:52 Um, and other people didn't like that. They looked at me and I would get called things like I was stuck up. And if people said I was better than them, but it wasn't like that. And I could never see that in myself. It was a case of, this is what we're supposed to do. Why are we not following these rules? So after a lot of, um, jobs that I've went through and I also was a graphic designer for quite many years. So I also freelanced as well. Um, I really wasn't coping well and I pretty much had a breakdown in when I was about 37. And so I ended up, uh, being able to stick the spinners for a couple of years, um, because I just could not cope with doing anything anymore. I couldn't understand. I was tired of trying to work out how to fit into a society that definitely seeing what, you know, if it wasn't for me, I thought, have I come from another planet, as I say quite often, because I feel quite alien to everyone else. Speaker 2 00:04:46 And it was unfortunately through my partner, um, always looking at something cause my partner is also on the autism spectrum, uh, and was always different too. And I happened to be looking up on the internet one night and come across, uh, Aspergers in Toronto about 2008. And I looked at all the criteria and I'm like, Oh, this is definitely him. But while I was doing that, I'm going, this is definitely great. And so from that process, I started learning more about what she's been women and it wasn't a lot of literature even back then, um, which is only 12 years ago. Um, I was reading a recipe book on from Leanne holiday Wiley, uh, pretending to be normal, that book resonated and normalcy with me. Uh, just her life story of growing up and not fitting in with pretty much identical as well, and also read the end purposes book, um, as well. Speaker 2 00:05:40 And that, uh, it's a different type of normal, different continental upon of that book. Um, and these all really hit home about Tate. Um, I've had the same loss as I have, so this helped me investigate further. So I went off to the psychologist to, um, tell them in great detail, this is what's going on. And I didn't get diagnosed autism that at the first time it was a case of, I got misdiagnosed with a mood disorder and social phobia. And I was like, but I don't fit that criteria. I don't fit these different things. It still didn't say right. And so after some time I was fortunate at a, uh, it was a lifestyle wellbeing, sort of, um, little workshop thing they had in the small town I was living in. And there was a doctor there that was very different to everybody else. Speaker 2 00:06:26 And I sort of like mesmerized by her because she tripped across the stage to come and talk me. She doesn't live different stuff. So I ran up to her and got very proudly. I've got all these things wrong with me and she went night haven't you could come and savings such as the local GP. And she sent me off to a psychiatrist that actually understood, um, ADHD and autism in adults. Um, because quite often has always been children that they tend to look for all these things. They tend to think we don't grow up and have it, which is the moment you get older. And it was through that process of that. Uh, I got diagnosed at that time, an Asperger's syndrome, ADHD and dyslexia, which I also did not have a clue. I had that as well about difficulties with grading Speaker 1 00:07:12 And that must've been so challenging looking at you now as an author and an advocate and an academic to find out you had that particular challenge. So they've just gone completely undetected for so long. Cause as you said, you were nearly 41 of these ones. Speaker 2 00:07:27 Yeah, well I was a very different person to what I am now. So back then I didn't have the strategies. I didn't have the support and I didn't have the knowledge of my own neurology and how to, um, support myself in different situations. So over the years, it's taken quite a few years to take a big step back and look at what is of value to me. And the sense of I've got to stop being like everybody else stopped trying to fit into something that's not working for me. And to sort of create a pathway of finding a way but worked for me. And so these were things that understanding how law could handle it, social situations and making out with people rather than forcing myself at that would lead me to more overwhelm and not coping. And it would impact on everything else that I was doing. Speaker 2 00:08:11 So it was really a process of turning things around and also the things of, um, even only three years ago with the spectrum of a book, it was the case that there still wasn't enough information out there from the life experiences of, um, autistic women. Uh, so I wanted to bring that together, along with the research and the clinical perspective as well. That's where we brought in the shell Ghana, who was wonderful in, in giving an insight from two different areas. So it fills a very significant gap and what we did and because there was 14 of us that did this, it wasn't just one person's point of view. It was lots of different people's points of view. So it wasn't biased in that sense. And because we all lived in different parts of the world too. So there's a Virgin Australia, it was the U S Ireland Germany. Speaker 2 00:08:59 So it was all different places. Um, this information at all resonated with each of us came through in that. And also at that time, I then started to embark on, um, studying at the university of Wollongong, uh, to do my masters well originally it was a graduate certificate in autism studies, but then changed over to a master of autism in education. And I was very fortunate there too, that my, uh, lecturer and professor, um, understood autism incredibly well. So I had the support in place to help make it through my studies. So having these things apply to people that actually understand and support, you really does make a huge difference in turning things around Speaker 1 00:09:43 When you were first diagnosed or when you were figuring out who you were and how your brain works and getting to know yourself as being on the spectrum. Was there a bit of maybe anger or sadness around all my life? I've been trying to play by the rules and be normal and all the time I've had these challenges that I wasn't in the bath. I didn't know. I had Speaker 2 00:10:06 Interesting. No, I wasn't angry. Always, actually very, very relieved. It was a case of, Oh good. There's an answer for all of this. It took a huge weight off my shoulders. So I wasn't angry. It was a validation going again. You're okay. You're not broken. You're not defective. It's just, you think differently. Some people do experience anger. Um, at the expense they close. Dave had so many challenges was such a major impact. Why haven't I had the supports and that will feel like, what do I do with my life now because of the age I am there's I quite often hear this with people, especially middle aged women side about, you know, I can't do these things anymore. I'm tired, I'm burnt out. Um, so if there's that anger about what has happened in my life, but, um, what needs to do is try and turn that around because we still have lots of not the move ahead of it. Some qualities, it doesn't matter what age it is. Um, it's a case of, yes, it's okay to sit in these particular points for a small amount of time, but don't stay there, start thinking about right, let's turn this around. What am I going to do to me? The rest of my life is all about me and stuff, everybody else. Speaker 1 00:11:14 So could you talk us through what you're doing now to work with other people on the spectrum and get them into that good place of looking after themselves? Speaker 2 00:11:22 Um, so what do I do these days? I'm called a developmental educator. So what that basically is doesn't mean I've worked with children because every time everyone's to hear that, Oh, I work with kids. I work with adults. So I do a lot of things in helping, uh, across the lifespan is, um, developing skills that will help them support you. So these are things about understanding where your strengths are, where you might have some challenges, uh, there's things like, you know, goal setting and vision planning. And let's map out where want to go with your life in that sort of thing. We build on everything cause the strengths-based approach and person centered approach that I look at. Uh, so we work together and work through different situations. I also do a lot of work, um, in the employment area. That's one area I'm very, very passionate about. Speaker 2 00:12:10 And especially, uh, with, um, young adults going from school, transitioning from school, into the workplace, um, that's where we really need to give them a lot of support in knowing what type of career do I want to do? What sort of job is going to suit my neurology? Um, let's understand. What about the workplace that you might find challenge you that you might not realize until you get in the workplace? And also from the perspective of working with the employer, um, getting tends to change their perspective of about, um, having true inclusion in the workplace. Because quite often it's not that there's quite after this and we'll do a little bit, but they don't, and they're not actually truly listening to the person that's working there, what might support them. And quite often it doesn't cost a lot of money to make these changes. It's just a bit of a thought, let's have some communication about what's going on. They might just need to rearrange how the office looks. Um, and it's not hard to do it well quite often when you look at that, um, it does not for that individual, the whole workplace can benefit from having these open discussions about what works for everybody. Speaker 1 00:13:11 Oh, workplace can benefit from some of those accommodations. You don't need to have a sensory processing disorder to benefit from quiet spaces or breakout spaces or understanding your sensory needs and those of other people in the workplace. Speaker 2 00:13:24 Yeah, absolutely, exactly what you say. We all have different preferences and things, you know, I know lots of typical people that really don't like crowds or they're introverted or extroverted. They do like perhaps, um, you look at, in that sense of just not the, um, the office place of where you're working, but also the environment at the top of jobs. So your neurology might be sort of like, I want something that's different all the time. So quite a lot of us, um, also apart from autism we'll have ADHD. So it's like something like 70% I'm I reading and research. Um, so some of us would like to regimented routine and that's some stuff up announced a lot to mix it up too with, you know, this is something different all the time to stop us from being, feeling bored at work, that sort of thing. Speaker 2 00:14:08 So you'd go off and go and look, and to a career site might be lost as a firefighter or a policeman. So it's giving you that sense of justice because many of us are very moral, um, driven and justice driven. So that's a really good example. I was like, okay, I want to do a career. That's exciting. So I'll be a policeman, but I've also got a sense of justice. I've got a regiment in what I'm doing and the standards that I have to get across it. It's a really good at understanding of all these sort of stuff that we can do Speaker 1 00:14:35 And understanding that, uh, people on the spectrum, aren't all going to be the computer programmers that you can have such a wide variety of talents and strengths to be anywhere really in the employment field, Speaker 2 00:14:47 Excellently <inaudible>, um, but all to be it and geeks. And that sort of, there's not a lot of different areas that very inside is the arts. Um, there is environment sustainability. I have met a lot of people that are in the environmental science, um, and the land care and caring for what's about us. I'm in a good example is Gretta some big, she have passionate that climate change because, um, we're very passionate about what we do. Um, I think as I said with the environment, but also with animals as well, where can we send? Because we connect really well with animals and understand us better. I recommend him. And sometimes there's lots of different areas we can be involved in. And so like from my own life experience, um, growing up, I was passionate about art. I love drawing all the time, but I was also a scientist as well. So I was quite interested in analyzing everything I could find. So I brought that together, going okay. I liked my science part art, my art path. And I did also liked doing computers, but not as in being a tech or anything, but do you think software to be creative with? So I brought that all together, so that satisfied quite a lot of different areas. Speaker 1 00:15:56 So what's the research you're doing now, working with adults on the spectrum Speaker 2 00:16:00 Research. So as a couple of different things that I've been involved in, one of them was, and I'm still involved in with, with dos, autistic adults and other stakeholders working together or something like that engaged together, sorry, that was started internet 17. That was my pathway of getting into research and bonds to be part of community council. And through that way, um, what in finding out the gaps in mental health and also in how research should be conducted, but from the end of that product of that research, we brought together and created a guide for researchers. So it was a case of how to approach it. So look at it from our perspective as autistic people, what do we want research rather than the research and choosing what they want to research on us? And the other thing was, is also in that guide, which is a compensation guide. Speaker 2 00:16:47 So how, what compensation should you give people that are involved in racist? But that was a really good outcome from that. And there was a couple of papers that we published as well through that. And that was on the mental health side, as well as, um, autism and how the rights of suicide and, uh, different areas that, uh, and have to listen to the autistic voice about what we want mental health and health care. So that was a really good project. Um, and then the university of Wollongong for my studies, we've got a small grant, um, to start a project on building, facilitating, building the voice and self-determination of young autistic adults. So this project is about, we brought together a group of people as a community of practice. Uh, so this is, um, got autistic people. It's got, um, professionals, it's got, parents has got all the different areas. That's coming in to talk about how we can support young adults in determining what they want to do with MRIs and for this project, uh, with now. So like they're still in the very early stages, but it's great in how we're towards an understanding what is beneficial? How do we get this information out there and how do we get people talking about this? Speaker 1 00:17:57 What would you like the future to look like for people on the spectrum and for society as a whole, Speaker 2 00:18:02 Everyone says to have a happy life, everyone deserves to should have the same opportunities as other, other people. Um, in sense of being able to get work, to feel included in the workplace, to have the opportunities, to get the supports that they need to get the education they need, and to have some sort of independence that works for them as well. It's really just a simple model of the human rights. That's what we're all really. We would be valued for who we are. Speaker 1 00:18:32 So from your own experiences and from your research, what advice would you give for young people on the spectrum, Speaker 2 00:18:39 Follow your dreams, do what you're passionate about. Don't listen to what other people tell you and don't follow the crowd. Be happy to be your own unique self. So if your ideas and your passions stand out very different from everybody else go for it, because that is what's going to make you happy. Don't follow the crowd and go, Oh, I just want to fit in with them and everything like that. Because quite often in the end, it's not true to your heart and true to your visions and passions because as we get older, those people, especially if you're at school in that as friends and peers change, as we grow and get into society. So if we can start early in the sense that it's going, it's okay to be me and to be uniquely who I am and follow that you really are setting yourself up for success and happiness. Speaker 0 00:19:28 Thanks for joining us at choice and control a carers Queensland podcast. For more information about carers Queensland, the national disability insurance scheme, or the local area coordination program, please contact us onl[email protected] Or you can catch up with us on Facebook search for carers Queensland and D I S. This podcast is a place for people with disability to share experiences, stories, and achievements. If you have a story you think we should know about, please contact us through the carers Queensland inquiries line at one 300 triple nine, six, three six, or email CQ dot [email protected] until next time. Thanks for listening. Speaker 1 00:20:14 <inaudible>.

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