[Music intro: ‘Winter is here’ by Elliot Middleton for Premiumbeat, a delicate piano melody which creates a hopeful mood]
Ginny: Hello, and welcome to our third episode of Amplified: Autistics in conversation with Reframing Autism.
I'm Ginny Grant, an Autistic advocate, a writer and Reframing Autism’s Communications Manager.
I'm so pleased to be chatting with Kathy Isaacs today. Kathy is Reframing Autism’s chairperson, and is also a director of the charity, The Autistic Realm Australia, also known as TARA, which facilitates connections and education through Autistic people. Previously, Kathy was the chair of the Autistic Self Advocacy Network of Australia and New Zealand. She currently works in the Operations team of the Autism CRC, and is also a registered nurse, with a passion for helping Autistic people navigate the healthcare system.
For those of you who are new to this podcast series, Reframing Autism is an Australian-based,
not-for-profit organisation, which is run by and for Autistic people and their families and allies. It is dedicated to creating a world in which the Autistic community is supported to achieve acceptance, inclusion and active citizenship. And we are all about nurturing and celebrating Autistic identity.
[Music continues briefly]
Ginny: Welcome to Amplified, Kathy. Let's start with your Autism journey. Could you tell us a little bit about when and how you learned you’re Autistic?
Kathy: Thanks, Ginny. I think my story is the new stereotype. My son was diagnosed after certain struggles at primary school, and the diagnosing psychologist had recommended some reading, reading, and in that reading I recognised myself.
So, in particular for me, I was reading about ways that Autistic people cope with being Autistic in a society that doesn't accommodate differences very well, and the first coping strategy I was reading about was called ‘Denial and Arrogance’, and I laughed and laughed. I thought, this guy knows my father. Oh, my goodness, we've got Autism in the family and it skipped a generation.
So then I turned the page, and the next section was titled ‘Imitation’, and no, it didn't skip a generation, and I got my own diagnosis a year or so later.
Ginny: That’s great. So, how did your interest in Autistic self-advocacy develop?
Kathy: Well, it came from connecting with fellow Autistic people and reading Autistic writing. So, the more I read, the more I realised that there is a lot of misinformation, misunderstanding, a lot of harmful beliefs about Autism and Autistic people out there. So, I didn’t set out to be an activist – I didn't set out to even be an advocate originally – but I do, have always had an almost pathological need to correct and clarify information that is false or that’s misleading. I also do tend to get very grumpy or upset or distressed if things are unfair. So, I guess it was a natural step to start writing and speaking out in ways that are trying to make things fairer for Autistic people.
Ginny: I can really relate to that. So, in terms of the Autistic advocacy work that you've done, what are you most proud of?
Kathy: That's a really hard question, because the things that I've been doing span a fairly large area of advocacy. I think probably the, the two things that I'm most proud of, are starting to write again. The writing that I do, I have a promise to myself that I won't write things that are untrue – now that's not, I don't mean fiction, I don't mean not writing fiction, I mean not writing things that don't ring true for me, not writing generic half-truths or generic phrases that, that just don't, that aren't right for me. So, some of the writing that I've done has been much more about self-exploration. When I write, keeping to that, that promise to keep everything real, I suddenly realise things about myself that I hadn't realised, and the fact of other people connecting to that, and other people saying that they recognise themselves in that, it's something that I'm really – I don’t know if proud of is quite the right word but pleased about.
Ginny: What do you hope to accomplish from your advocacy work in the future?
Kathy: A world where all Autistic people can be free to be themselves and be accepted for who they are and recognised for their strengths and accommodated on their challenges.
Ginny: Amazing!
Kathy: But we need all of us for that. For myself, every time somebody recognises themself in something that I've written or something that I've said, and explores it a little bit and can start to reframe … oh reframe, let’s bring the title in … It can start to reframe their history and their understanding of who they are, from a perspective of not being broken and not being the one at fault, not being at fault for struggles they've had. That's, that’s probably the most important part of advocacy. For each person who suddenly realises that they're not a broken person, the groundswell of understanding and speaking and writing about Autism, so that it becomes the new understanding, the new narrative … that just becomes stronger.
Ginny: Can you tell us a bit about The Autistic Realm Australia, and your involvement with it?
Kathy: So, we’ll shorten the name to TARA because that’s a lot easier to say. TARA’s a charity that provides peer support to Australian and New Zealander Autistic folk. The main roles that we have are peer support for Autistic people, Autistic adults, and support for Autistic kids, by providing the support and experience-based research to their parents. So, the focus is on the child's experience. If we're talking about behaviour, we're talking about what that behaviour is communicating. Behaviour … ‘All behaviour is communication’ is one of our catchphrases. We come back to it again and again. Autistic kids who are behaving in challenging ways are usually saying that there is something really wrong for them, for their experience, for their sensory input, and they're responding to that.
TARA began six or seven years ago. It was a Facebook support group for Autistic girls originally. Most Autistic people and people in the … who work in this area know Autism’s historically been associated with boys, been recognised and diagnosed in boys a lot more readily than it is in girls, because girls tend, overall, to mask and hide and to imitate their peers. But, I will add, that is not limited to girls, and it isn't the case for all Autistic girls. I don't think there's any such thing as ‘pink Autism’ and ‘blue Autism’, as they call it – Autism as it presents in girls, Autism as it presents in boys. But I do think that the idea of internalising or externalising your struggles tends to encapsulate a lot of the differences that are seen, and a lot of the reasons that, traditionally, girls have been less easy to diagnose.
So, anyway, with TARA, I found the group accidentally when I was looking for a group for Autistic women, and I contacted Stacey, the founder of The Sisterhood of the Autistic Girl, and together we created a sister group for Autistic women. Then this group started to grow quite a bit, and we realised, as we had a lot more conversation within the group, that gender in Autistic people is a lot less binary, less clear-cut than in the general population. So, we still wanted a safe space and, while we'd always accepted trans women as women and welcomed them into the group, we started to realise that a lot of our members who were assigned female at birth were beginning to identify as non-binary or were transitioning to men. And so, we didn't want to make this increasingly large group of our members feel that they were obliged to leave or feel excluded or on the outer. So, we changed the women's group name to ‘The Siblinghood’ rather than ‘The Sisterhood’, and it's now a safe space for, for women, for Autistic women, cis or transgender, for non-binary people, and for trans men. We actually got a lot of flack when we changed our name, because not everybody in the group was completely comfortable with an open acknowledgement of the gender diversity in Autism, but we felt it was really important to do that. Then around about the same time we combined the parents’ groups, the large, girls’ group and the smaller, boys’ group, into one group, and called it, like under the name of TARA, The Autistic Realm Australia. So, we incorporated that group last year, and launched a charity on Autistic Pride Day, June 18th of 2019, opened a couple of other Facebook groups too, including Fully Spectral which is for all genders, including cisgender men who seem to be the only ones that are left out of The Siblinghood, which is a bit of a turnaround for, from society, and one for Autistic parents, meaning Autistic people who are parents, not parents of Autistic kids. My role in TARA is that I'm one of the admins for the Facebook groups, and I'm also on the board, and I was elected chair at our last AGM because they said that I had the most experience for that role.
Ginny: Well, look, your groups have been really, really influential in the lives of so many families around Australia, and particularly my own. TARA, that original group, was really fundamental in my journey in being able to connect with Autistic adults, pre-diagnosis. And, so, really, we were on that path towards acceptance, before we even had a diagnosis, and that's a really, really positive story that I'm able to tell and TARA is absolutely at the centre of it. And then, The Siblinghood group has provided wonderful support in my own personal life, too, so I should make sure I thank you for those, for those groups.
Let's talk now about the work that you've done as a nurse. Previously, you were a palliative care nurse, is that correct?
Kathy: Yep.
Ginny: Can you, can you talk a little bit about what drew you to that role?
Kathy: I can't answer that without just sounding, without it sounding a bit twee. But, from a very, very young age I wanted to help people, and, being Autistic, I wasn't always that good at it.
And I felt growing up that my urge and desire to help people was a little bit shameful. But, as I got a bit older, I started to work in areas that led me into nursing and realised that the one, one of the things that nursing offers is practical ways to help, rather than just a general desire to be helpful – so, things that will really, physically make a person more comfortable and at the same time support them emotionally and spiritually, if you like.
One of the things that I've got up on my wall, which I use as a basis for every part of advocacy that I do. is called ... it's, it's a concept called ‘cultural safety’. It was developed in New Zealand in a nursing context and it says: ‘A culturally safe environment is one that is spiritually, socially and emotionally safe, as well as physically safe for people, where there is no assault, challenge or denial of their identity, of who they are and what they need. It is about shared respect, shared meaning, shared knowledge and experience, of learning, living and working together with dignity, and truly listening.’
And that has been fundamental, that is, that completely encapsulates everything that I believe about advocacy, about nursing, about activism, also. The things that are important to me are all within that, that quote. Palliative care was particularly good for that because it's so focused on the whole person, and from … like that person at the centre and their family are also included. That's a fabulous way of doing nursing, but it's also a really good way of working in marginalised communities.
Ginny: You've also helped Autistic people to navigate the healthcare system safely and effectively. What are some of the main barriers to healthcare that exist for Autistic people, and how have you helped others to access healthcare?
Kathy: There are a few really strong barriers. The two that keep coming up again and again are communication differences and sensory issues. So, with the communication differences, people find that, because they may not express pain, as an example, in the way that most people do, they're not believed. They're treated as hysterical. They're told that their issues, their physical issues are psychosomatic. They're told to go and seek help from a psychologist, whereas they might have Epilepsy, that’s one. One person was telling me that they were told that the kind of, their Epilepsy was just like a psychological issue, and they weren't treated for far too long until they had a significant seizure. Also trying to explain things to doctors and nurses who understand in one way, something that you understand in a very different way because your experience of your body, your experience of the input with the outside world is different from what they are expecting to hear. So, for an Autistic person who has an appendicitis, like an appendix burst, for example, that is usually felt as sharp pain in a particular space, nausea, and fever. We might find it to be something completely different – back pain or leg pain. We might feel it as being dizziness. We experience things differently. Our interoception – our understanding of what's going on inside us – is different. It might ... some things are much more acute to us and some things are much less acute. And so, those differences mean that the words we use to describe what's going on for us don't necessarily cover off what, what the doctor’s expecting.
The other big barrier for all of us is that we tend on the whole to have sensory differences. Apart from interoception, we'll hear things, see things, smell things differently, often more strongly, and so being in healthcare environments can be completely overwhelming. If you’re completely overwhelmed, and you're experiencing pain or other illness, you can go into a shutdown and therefore you can't communicate with the doctors. There are things that, that healthcare settings can do to make things easier for Autistic people, like providing a quiet, darkened environment. Not everybody will want that, but it's a good basis. Allowing time for asking, answering questions and listening to the person's experience of their own ... like listening to their own experience. So, one of the ways that I've helped with that is that I've created some, some documents for people that they can give to their healthcare providers that explain some of the issues that affect that person individually. There's a lot of work in those, I put into those documents, and now that I'm working full-time I'm not following up with the, the healthcare stuff nearly as much but I'm hoping to be able to find some time to do more on that this year.
Ginny: Those are such important points that you raise around the barriers to health care and I think that work that, you know, you have done in that area is just so valuable.
Thank you, Kathy. And thanks to our audience for listening to the third episode of Amplified. In our next episode we'll be talking with Stevie Lang, who is an Autistic writer and advocate. Stevie writes about Autism, sexuality, and gender, and has a large Instagram following at _steviewrites on Instagram.
If you're not already part of our social media communities, please do join us online. You can find us on Facebook, Instagram, LinkedIn, Twitter and YouTube. We also have a website, www.reframing autism.com.au, which has a treasure trove of Autistic-created resources. Thanks, then. Bye-bye.