Episode 11: Barb Cook

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Intro: Choice and Control, a podcast celebrating people with disability. In this season we're talking about access, inclusion, and the National Disability Insurance Scheme. This podcast series is brought to you by Carers Queensland, NDIS Local Area Coordination Partner in the Community.

00:23 Jodie van de Wetering: Hi, I’m Jodie van de Wetering.

For author, academic, and developmental educator Barb 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.

00:49 Barb Cook: Life for young Barb was 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, I would spent a lot of time in my own head space or would be fascinated by rocks in my garden. We had a driveway where I would sit down, I just liked, I was so interested in that sort of stuff. My parents, they were very accepting of who I was so they let me do things my own way, and I was very much caught up in my own world as a young Barb.

As I got older, things started to change a little as I got into the high school environment. I started to really realise I didn't fit in with the rest of the people, and my peers around me. Everybody else was getting interested in boys and doing things like that but I was still interested in my rocks and collecting. I also collected key rings, nd stamps, and collecting Barbie dolls. I was very much into that sort of stuff, too. Not to play with, mind you. Mine was a sense of having them there on display, check them out in their boxes, pull out ones, put them back in. And so they basically stayed in their little tombs for the rest of their lives on my shelf. So these sort of things started to become very apparent as well.

Other interesting things for me, young Barb had to have things, everything in their place. So I would have at the end of my bed, this lovely vinyl red beanbag with all my stuffed 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 Barb. I would have absolutely have a meltdown over it. I would get upset if anybody else touched them. And it was the same with a lot of different things. I was very, needed everything in its place because it gave me a sense of control of my environment, knowing where everything was. Um, so anything that was unexpected really, really stressed me out.

02:58 Jodie: and then, getting older, coming into adulthood, what was the process of getting diagnosed and finding out you were on the autism spectrum?

03:07 Barb: Well the process of getting diagnosed, I didn't get to that point until I was heading up to 40. I'd had a lot of struggles through my life with anxiety and depression, and feeling I couldn't fit into the society that was around me. So I had a lot of jobs that I would be at for short term. Doing the work itself would be great, I had no problem with that. Always was commended on how well I would do a job.

But it was the people that I actually struggled enormously with. The social dynamics, the chit chat of ‘oh, we're going down to the pub' or ‘have you heard about So-and-so has done this?' never interested me. To me it was a case of, we're here, we've got to do the job, we need to do this, and other people didn't like that. I would get called things like I was stuck up, and 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 jobs that I went through, and I also was a graphic designer for many years so I also freelanced as well, I really wasn't coping well and I pretty much had a breakdown when I was about 37. And so I ended up being on sickness benefits for a couple of years 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 just didn't seem right, you know, if it wasn't for me. I thought ‘have I come from another planet?', as they say quite often, because I feel quite alien to everyone else.

It was only fortunately through my partner, I was looking up something because my partner is also on the autism spectrum, and was always different too. And I happened to be looking on the internet one night and come across Aspergers syndrome, this was 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 me, too'.

And so from that process, I started learning more about autism in women. There wasn't a lot of literature back then, which is only 12 years ago. I was reading a book from Leanne Holiday Wiley, Pretending To Be Normal, that book resonated enormously with me. Just her life story of growing up and not fitting in, was pretty much identical as well, and also read Yenn Purkis' book, A Different Kind Of Normal is the name of that book. And these all really hit home, they've had the same life as I have, so this helped me investigate further. So I went off to the psychologist, to tell them in great detail, this is what's going on.

I didn't get diagnosed autism 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 seem right. And so after some time I was fortunate. At a lifestyle, wellbeing sort of workshop thing they had in the small town I was living in, there was a doctor there who was very different from everybody else. And I was sort of mesmerised by her because she tripped across the stage to come up and talk. She's clumsy like me! She does all this different stuff. So I ran up to her and said very proudly ‘I've got all these things wrong with me' and she went'No you haven't, come and see me'.

She was a local GP, and she sent me off to a psychiatrist that actually understood, ADHD and autism in adults. Because quite often it's always been in children that they tend to look for these things. They tend to think we don't grow up and have autism when we get older. And it was through that process that I got diagnosed with Aspergers syndrome, ADHD and dyslexia. I also did not have a clue I had that as well, about difficulties with reading.

07:12 Jodie: 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 that had gone completely undetected for so long. Because as you said, you were nearly 40 by this point.

07:27 Barb: 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 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, stop trying to fit into something that's not working for me, and create a pathway of finding a way that works for me.

And so these were things like understanding how long could handle social situations, and meeting up with people rather than forcing myself into situations that would lead me to more overwhelm and not coping. And that would impact on everything else that I was doing. So it was really a process of turning things around.

Even only three years ago with the Spectrum Women book, it was the case that there still wasn't enough information out there from the life experiences of autistic women. So I wanted to bring that together, along with the research and the clinical perspective as well. That's where we brought in Michelle Garnett, who was wonderful in giving an insight from two different areas. So it fills a very significant gap, what we did, and because there were 14 of us 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 were people from Australia, the US, Ireland, Germany. So it was all different places, and this information resonated with each of us and came through in that.

I then started to embark on studying at the University of Wollongong, to do my Masters. Originally it was a Graduate Certificate in Autism Studies, but then I changed over to a Master of Autism in Education. And I was very fortunate there too, that my lecturer and professor understood autism incredibly well. So I had the supports in place to help me get through my studies. So having these things in place that actually understand and support you really does make a huge difference in turning things around

09:43 Jodie: When you were first diagnosed, 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? ‘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 warned about, I didn't know I had'?

10:06 Barb: Interestingly no, I wasn't angry. I was 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, again: ‘You're okay. You're not broken. You're not defective. It's just, you think differently.'

Some people do experience anger, because they've had so many challenges and it's had such a major impact. ‘Why haven't I had these supports?' ‘What do I do with my life now, because of the age I am?' I quite often hear this with people, especially middle aged women saying ‘I can't do these things anymore. I'm tired, I'm burnt out.' So if there's that anger about what has happened in life, what they need to do is try and turn that around because we still have lots and lots of years ahead of us. It doesn't matter what age it is. Yes, it's okay to sit in these particular points for a small amount of time, but don't stay there. Start thinking ‘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.'

11:14 Jodie: 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?

11:22 Barb: So what I do these days, I'm called a developmental educator. It doesn't mean I work with children. Every time someone hears that, ‘Oh, you work with kids.' No, I don't, I work with adults. So I do a lot of things in helping, across the lifespan, developing skills that will help and support you. So these are things about understanding where your strengths are, where you might have some challenges. There's things like goal setting and vision planning, let's map out where you want to go with your life, that sort of thing. We build on everything, the strengths-based approach and person-centred approach that I look at. So we work together, and work through different situations.

I also do a lot of work in the employment area. That's one area I'm very, very passionate about. Especially with young adults going from school, transitioning from school into the workplace. 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? Let's understand what about the workplace you might find challenging, that you might not realise until you get in the workplace?

And also from the perspective of working with the employer, getting them to change their perspective of about having true inclusion in the workplace. Because quite often it's not that, quite a often it's ‘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 thought, let's have some communication about what's going on. They might just need to rearrange how the office looks. It's not hard to do, and quite often when you look at that, it's not just for that individual, the whole workplace can benefit from having these open discussions about what works for everybody.

13:11 Jodie: And the whole 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.

13:24 Barb: Yeah, absolutely, exactly what you say. We all have different preferences and things, you know, I know lots of typical people who really don't like crowds or they're introverted. Or they're extroverted and they really do like crowds. In that sense you look at not just the office place of where you're working, but also the environment at the type of jobs. So your neurology might be like, ‘I want something that's different all the time'. So quite a lot of us, apart from autism we'll have ADHD, it's something like 70% I'm reading in the research. So some of us would like the regimented routine and that sort of stuff, but a lot of us like to mix it up too with something different all the time to stop us from being bored at work, that sort of thing.

So you'd go off and go and look at careers, it might be a firefighter or a policeman. So it's giving you that sense of justice, because many of us are very moral-driven and justice-driven. So that's a really good example: I want a career that's exciting. So I'll be a policeman. 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's a really good understanding of all the sort of things we can do.

14:35 Jodie: And understanding that people on the spectrum aren't all going to be computer programmers, that you can have such a wide variety of talents and strengths to be anywhere really in the employment field?

14:47 Barb: Absolutely, it's such a myth about IT, that we're all going to be IT and geeks. No, there are a lot of different areas that we're in. We're in the arts, there is environment sustainability. I have met a lot of people that are in environmental science, and land care, and caring for what's about us. I mean a good example is Greta Thunberg, how passionate that climate change, because we're very passionate about what we do. Also with animals as well, working with them, because we connect really well with animals and understand us better I reckon that humans sometimes.

There's lots of different areas we can be involved in. From my own life experience, growing up I was passionate about art. I loved drawing all the time. But I was also a scientist as well. So I was quite interested in analysing everything I could find. So I brought that together going okay, I like my science path, my art path. And I did also like doing computers, not as in being a tech but using software to be creative. So I brought that all together, so that satisfied quite a lot of different areas.

15:56 Jodie: So what's the research you're doing now, working with adults on the spectrum?

16:00 Barb: Research, so there are a couple of different things that I've been involved in. One of them was, and I'm still involved with in the US, Autistic Adults and Other Stakeholders Engaged Together. That was started in 2017, and was my pathway of getting into research and to be part of community council. And through that, we worked in finding out the gaps in mental health and also in how research should be conducted. From the end product of that research, we brought together and created a guide for researchers. So it was a case of how to approach us, look at it from our perspective as autistic people, what do we want research rather than the researcher choosing what they want to research on us? And the other thing, also in that guide, is a compensation guide. So what compensation should you give people that are involved in research? So 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, autism and the rates of suicide, and how to listen to the autistic voice about what we want in mental health and health care. So that was a really good project.

And then through the University of Wollongong for my studies, we've got a small grant to start a project on 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. This has autistic people, it's got professionals, it's got parents, they've got all the different areas coming in to talk about how we can support young adults in determining what they want to do with their lives. We'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?

17:57 Jodie: What would you like the future to look like for people on the spectrum, and for society as a whole?

18:02 Barb: Everyone deserves to have a happy life. Everyone deserves to have the same opportunities as other people, in sense of being able to get work, to feel included in the workplace, to get the supports 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 human rights. We should be valued for who we are.

18:32 Jodie: So from your own experiences and from your research, what advice would you give for young people on the spectrum?

18:39 Barb: 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. As we get older, those people, especially if you're at school, our friends and peers change as we grow and get into society. So if we can start early in the sense of saying ‘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.

23:04 Outro: 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 online at www.carersqld.com.au.

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Until next time, thanks for listening.