Episode Transcript
[00:00:11] Speaker A: Hi everybody, I'm kj. My pronouns are they, them, I'm multiply, neurodivergent, or what I sometimes refer to as autistic. Plus I'm neuro queer, genderqueer, and apparently now elder queer as well.
I wasn't quite sure I was ready to identify as elder queer, but that's what some other people have started to refer to me as and it's growing on me. I gotta say.
I'm a parent, I'm a counsellor, a therapeutic game master, and as of recently, game designer. And today I will be talking to you about the Practice Innovation project that I have been engaged in this year.
How we deal with autistic burnout.
So a few acknowledgements I am fortunate to live and work on beautiful Kaurna land, so I'd like to pay my respects to the Kaurna people, elders past, present and emerging, and extend that respect to all first nations people.
I'd like to acknowledge my neurokindred autistic advocates and scholars, and in particular my co researchers in this project, the lived experience experts who contributed to the document.
I'd like to acknowledge the pioneers of narrative practice, the practitioners, researchers, writers and colleagues who have generously shared their stories of practice for us all to learn from.
A little about my context.
I am a counsellor in independent private practice and the people that I meet with are deaf, disabled and or neurodivergent folks, mostly adults across a wide range of gender, sexuality and relationship diversity.
So intersectionality is a big part of my practice and I recognise that I experience privilege as a white hearing ambulant, English first language and tertiary educated person, in addition to many other forms of privilege that I'm probably less conscious of on a day to day basis.
My academic background isn't in the area of community work or social work or youth work, and for many reasons I find one to one conversations much more comfortable than engaging with larger groups of people.
And in my work context as well, I'm most often in conversation with individual adults, many of whom are late identified autistic or more broadly neurodivergent, and only occasionally do I meet with groups, families, couples or polycules.
However, in these last two years as I've been reading about collective narrative practices and definitional ceremonies and the creation of collective documents and archives of insider skills and knowledges, I've become really excited about the possibilities of expanding expanding my work in this way.
I'm particularly drawn to the idea of creating collective documents that allow autistic people to richly describe their unique Skills and knowledges now, narrative therapy offers a wealth of knowledge for me to engage with a wide range of stories of practice and community projects and collective documents.
And as I read these and I translate the learnings into my own context, ethics of care and accountability to the autistic community are an essential part of originating narrative practices that honour and celebrate autistic culture and skills and knowledges.
Now, so far, as Didi implied, I haven't found other accounts of definitional ceremonies or collective narrative practices, specifically with autistic adults, although there have been some projects that have gathered insider knowledges of caregivers of autistic children and collective narrative practice with young people with Asperger's syndrome who have experienced bullying.
However, I have learned a great deal from many, many wonderful collective documents created by other groups of people sharing the skills that get them through hard times.
And I've drawn particularly from the work of David Denborough, David Newman, Tiffany Soster, and David Epston to guide me in this process.
So, a little bit about some language considerations.
Now, narrative practice requires us to take care with language, to refrain from generalizing and totalizing and imposing our own language on the people that we're in conversation with, to use experience near language, to be curious about what particular words are meaningful to the person we're in conversation with, to thicken descriptions and to ask about the details of these meanings rather than assuming that we already know them.
Now, these are important considerations for me in any conversation.
I frequently humble for words or for signs, and sometimes I don't find them.
I don't always express things in the way that I'd like to or in the way that's the most resonant for the person that I'm meeting with.
And the degree to which this bothers me speaks volumes about how much it matters to me to use language that connects and avoid language that offends or excludes or oppresses.
Now, in the context of my work with deaf, disabled and neurodivergent communities, there are some particular sensitivities for certain ways of using language, and these particularities are constantly changing, which keeps me on my toes. And I imagine that that's true of the context in which many of you work as well.
So a few examples of these particularities. In my context, there has been a shift over the last 10 or so years, maybe a bit longer, from a preference for person first language to a preference for identity first language.
So if you say someone has autism or they live with autism, or they've attracted the label of autism or they've received a diagnosis of autism.
Those are examples of person first language.
Whereas when I say I'm autistic, I'm neurodivergent, I'm neuroqueer, those are identity first language.
So that's been a significant shift and it's not shifting at the same rate equally across the entire community.
So people are at different points in that process of change.
The other, the other thing that has been changing over, well, it's constantly changing. But there's a growing aversion to euphemisms like saying that someone is on the spectrum, to functioning labels saying someone is high functioning autistic or low functioning autistic, to pathologizing or deficit based language terms like selectively mute or even the word disorder. So many people don't use the acronym ASD for Autism Spectrum disorder.
Some autistic researchers who publish in, say, psychology journals and so on are now using ASC for autism spectrum condition to indicate the fact that although it's still ASD in the DSM 5, they object to it being classified as a disorder.
Now, these changes happen not only in spoken and written language. Auslan also has experienced a shift. There used to be two different signs for autism, one which indicates someone not making eye contact, and the other was this one, which indicates someone being completely self absorbed to the extent that they don't make contact connections with other people.
I never felt very comfortable with either of those signs, funnily enough.
But there's been a shift just in the last couple of years and this sign for autism is now becoming much more widespread. So language change always happens.
The most widely recognised symbol that's usually used in or seen in relation to autism is the jigsaw puzzle piece.
And I think that Emma vanderklift summed up the growing aversion to that symbol really well in this quote from the article, A reflection on self regulation and Neuro conceal.
[00:09:14] Speaker B: If I am a puzzle, it is implied that I am something to be examined, studied, understood and ultimately solved.
[00:09:20] Speaker A: So rather than a jigsaw puzzle piece, the symbol preferred by many autistic and more broadly neurodivergent folks is the infinity symbol or limnoskette.
And it's usually if you see it in just gold, that indicates autistic, and when you see it in rainbow colours, that usually is an indication that it's talking about neurodivergence.
So there are several reasons why how we deal with autistic burnout is a living document, not just a collective document, but a living document.
And these Kinds of language considerations are a big part of that.
So I had been giving a lot of thought throughout the year to how to negotiate the diversity of usage and preferences for certain terms now, because every speech act is an act of identity, and choice of terminology relating to identity especially so. And I'm very much aware of the processes of language change over time.
Now, not surprisingly, it turned out I wasn't the only one thinking about this. One of the people who was a contributor to this document made this comment as we were in conversation.
Our knowledge of language usage to describe all this stuff is still developing over time. There's some words I don't use anymore or some words that I use now that I may not use in the future. And so this, I felt a really strong resonance with this concern.
And I've come to to feel that for me, this is one of the greatest benefits of creating something that is a living document. Because, because as a contributor, knowing that your words are going to be recorded in some sort of permanent form can be really daunting.
But knowing that it's a living document that's going to continue to be updated and revised. And if you change your point of view on something, you can actually have it changed in the document to reflect that updated understanding that can allow us to speak freely today without needing to try too hard to future proof every single word that we say.
So there may be some terms that come up in my presentation that are unfamiliar to you, or there might have been some already.
If that's so, I want you to know that I don't use jargon deliberately to obfuscate or exclude.
So instead, I would invite you to make a note of the terms that I use that you might not have heard before and take the opportunity to expand your vocabulary.
Language and linguistics is one of my spins or one of my special interests. So any day that I learn a new word is a great day as far as I'm concerned.
I would like to just say a little bit about autistic culture. I want to provide a bit of context because maybe the term autistic culture could be new to some of you.
Ten years ago, a chapter entitled Autism as Culture was published in the Disability Studies Reader.
And in that chapter, Joseph Strauss wrote, we're living in a period in which a culture of autism, constructed not by medical professionals but by people with autism.
Notice he did say with autism. But then this was 10 years ago.
Has begun to arrive six years later in 2019, volume one, issue one of ought, the Journal of Autistic Culture, was published, the editors quoted Strauss and wrote of their hopes for aught we hope this journal further evidences this arrival, signalling that autistic culture is worth examination in its own right and by its own people.
As Strauss suggests, this means countering the dominant medical view that positions autism as a mental disorder to be corralled or cured.
Instead, we see ought the Journal of Autistic Culture as a small part of the larger neurodiversity movement, the campaign to recognise neurological difference as normal and necessary to human development.
So when I say in this presentation that something is a feature of autistic culture, I don't mean at all to imply that it applies to every single individual who identifies as autistic or that it's unanimously agreed upon, but that it is widely recognised and commented on in autistic spaces as being autistic culture.
So onto my story of practice.
So the aim of this project was to richly describe the special skills and knowledges autistic adults in dealing with a range of difficulties that are commonly described by autistic people as autistic burnout. And I had the hope that such a document could facilitate the linking of lives around shared themes and the circulation of preferred stories and alternative knowledges to others who might be experiencing similar difficulties.
Before I go any further I'd like to ask is this term autistic burnout familiar to you? Or is this a new term?
Unless you're autistic yourself or you have people close to you who are, or you work specifically in autism related or disability related fields, I wouldn't necessarily expect that you would be familiar with it.
But it has been talked about in blogs and on social media by autistic people for some time.
It's not a term that's very well known to the neuro majority and it's only begun to appear in academic literature since about 2020.
There still aren't very many peer reviewed journal articles about it and in the field of narrative practice specifically, as far as I've been able to discover, it's not yet been written about.
If I'm mistaken there and you know of an article that I've somehow missed, please do let me know, I'd really appreciate it.
So I'll share with you a definition of autistic burnout as a starting point and recognising of course that the meaning of this or any other term to any particular individual can't be assumed.
But this definition was co produced and agreed upon by by a group of 23 autistic adults, all experts by lived Experience of autistic burnout who participated in this research project defining autistic burnout through experts by lived experience.
So the researchers took care to develop a thick description and conceptual framework with a multi stage process to reaching consensus on this definition.
Autistic burnout was defined as a highly debilitating condition characterised by exhaustion, withdrawal, executive function problems and generally reduced functioning with increased manifestation of autistic traits. And it's distinct from depression and non autistic burnout.
And the authors went on to say that autistic burnout is anecdotally linked to suicidal ideation and driven by the stress of masking and living in an unaccommodating neurotypical world.
Now, viewing this through a narrative practice lens, you might be wondering about some of the externalising conversations that happen in this space and what's being perceived as the problem?
Is autistic burnout the problem or is autistic burnout a way of responding to the problem?
If autistic burnout is driven by the stress of masking, is masking the problem? If we stop masking, will we solve the problem?
Dr. Wynn Lawson, autistic researcher and consultant, points out that it's important to question assumptions about commonly used terms like masking.
Words are powerful. They shape and are shaped by our assumptions, perspectives and concepts.
As such, words can unintentionally lead others to certain beliefs or positions which may not be accurate or helpful.
When positioning oneself with certain terminology or expressions, we need to consider the outcome.
In using the powerful tool of language, it's our responsibility to make sure that the words truly represent an individual's or group's reality, are appropriate, and are not simply the language of the majority.
For example, when words such as pretend, mask and camouflage are used, they imply intent to deceive and deception implies conscious cheating.
So rather than perpetuating these unhelpful dead metaphors, Lawson suggests the term adaptive morphing. Now, adaptive morphing is what chameleons do. A chameleon's skin changes colour as a biologically based survival response, not a deliberate attempt to deceive.
Lawson suggests that autistic people also have a range of survival responses to perceived or actual threat of social exclusion. And one of those responses may be to adaptively morph.
As long as our society lacks truly inclusive attitudes and practices, autistics will need to continue to display chameleon like responses in socially threatening situations. Our mental, emotional, physical and financial lives depend on it.
So this suggests that masking is not the problem.
Neuronormative Attitudes and practices. Other problem.
Now, how did the idea of this project come about?
I speak from an insider perspective here. I have personal experience of autistic burnout and in my work context many individual conversations with people who are experiencing difficulties that they described as autistic burnout.
Earlier this year I was contacted by an autistic led model, not for profit organization.
They had surveyed their autistic community about what topics they'd like to discuss in upcoming online community workshops and the most requested topic was autistic burnout.
So I was invited to facilitate that workshop. In March of this year, over 300 people registered for the workshop.
So, you know, this was an indication that many autistic adults see autistic burnout as a significant issue in their lives.
And I think this quote from Erin Heumann reflects the sorts of difficulties that many autistic folks experience in seeking help that is actually helpful.
[00:20:45] Speaker B: When you are autistic and grappling with burnout and you set out to seek help, you will find that many of the techniques recommended to neurotypical people dealing with burnout or depression do not work for us. Sometimes they can even make burnout worse or send us into shame spirals over not being able to do the things we've been told will make us feel better.
[00:21:04] Speaker A: That online workshop was only 90 minutes and we did have some very valuable discussions of hard won knowledges and preferred stories and skill in dealing with this thing called autistic burnout.
I believed that further conversations could offer great opportunities to thicken these preferred stories that we'd touched on and that it could be really beneficial to have some way of collecting and archiving and sharing and circulating these knowledges, both the things that we had identified during that workshop and other things that we hadn't identified yet, but which I was pretty sure we would if we opened up a conversation about them.
One aspect of autistic culture that is widely recognised is a really strong set of values related to social justice and and equity.
Many of us express a deep desire to do what we can to create a more inclusive and equitable society.
So contributing in whatever way we can, especially if we think it's possible that that contribution is going to reduce the suffering of someone somewhere, even if we never know about it, is something that is really culturally resonant. So I guessed that the idea of making a contribution to some kind of collective document was would really appeal and that many of the participants would appreciate an opportunity like that.
So I asked permission from the organisation that had hosted the workshop and we agreed on some things that would need to be clearly stated in the invitation, because autistic culture is a high context culture and we really appreciate unambiguous, explicit, detailed information before we get involved in things.
So 10 people responded to the invitation by emailing me over the following week.
I had some individual correspondence with each of them providing further context and details about the project.
So clear explanations and willingness to accommodate different communication preferences and transparency about processes. They're all highly valued in autistic culture as well. So it was really important to me to explain what I was proposing as clearly as I possibly could. I wanted to make sure that I gave each person the chance to make their contribution in whatever way would work best for them.
From my conversations with many other autistic folks, I was aware that many of us prefer to take our time to ponder questions before answering them, and some of us prefer asynchronous conversations in writing rather than synchronous conversations in spoken language.
And some of us are happy to have a one to one conversation via video call, but we may still want to read the questions and make notes of what we want to say prior to the conversation.
So I sent the interview questions as a word doc attached to an email in which I offered all of these options. And I also let them know that if there was some other way that I hadn't found, thought of or mentioned that would be preferable for them. And they were welcome to suggest that since difficulties with language processing can be a feature of our neurotype, and it's frequently a thing that autistic people say becomes more difficult at times when autistic burnout is present.
I also let them know that they were welcome to respond as briefly or in as much depth as they liked to any of the questions, and that they were welcome to ask for clarification if any of the questions were unclear, and that if certain questions didn't land for them, then there was no pressure to answer all of the questions.
Placing a very high value on autonomy is also a widely recognised feature of autistic culture, and so is completionism, or, you know, a sense of pressure to provide full and accurate information in response to every single question.
And this is why.
Well, part of why so many autists have difficulty with filling out forms or questionnaires in general.
So I wanted to make sure that I phrased my side of the email conversation in a way that highlighted their agency in choosing how to respond and as far as possible, attend to relations of power by positioning us as equal partners in a conversation rather than a hierarchical relationship. Dislike of hierarchies is another feature of autistic culture, by the way, I reiterated that since this would be a living document, further contributions or changes could be made later.
I hoped that this would reduce the concern that some people may have about their words being documented and the pressure that people may feel to respond within a set time frame.
Feedback that I've received so far tells me that this has been helpful for several of the contributors. In fact, I received emails from two more contributors just yesterday.
Their contributions have not yet been added to the document that I've uploaded, so you won't see those There isn't time in this presentation to go through the full list of questions that I included in the asynchronous interviews, but I would like to highlight a few of them.
So I asked how did you first become aware that you were experiencing something that could be called autistic burnout?
What was the history of this experience in your life? How long had it been around?
When did it first enter your life?
Had it come into your life once or more than once over your lifetime?
Did you have a name for what you were going through? Or perhaps several different names over different times in your life? How did you arrive at these names? What name do you prefer to call it now? I didn't want to assume that would help. Autistic burnout was necessarily everybody's preferred way of talking about it.
I asked, do you think that there was some kind of discourse or some particular set of expectations involved in how you were experiencing the effects of autistic burnout?
If so, what might you call this discourse or set of expectations in the ways that you responded to those expectations? Were you going along with them or were you doing something else?
I then went on and asked about the skills that they had developed through their experience.
In my development of this project, and particularly in developing these questions, I was very much guided by the suggestions provided by David Denbrough in the chapter Collective Documents as a Response to Collective Trauma from the book Collective Narrative Practice.
In adapting these questions to be more resonant with autistic culture, it was really important to provide context and options and in some cases to ask multi part questions such as were there other connections that were important to you in relation to these experiences? These connections might be people, or they might be connections to other beings, things, ideas, places.
I also invited their collaboration in refining the process of gathering stories and contributions to this living document in the future by asking questions like were there any questions that I didn't ask that you would have liked me to ask or that you think would be helpful to add when I'm having conversations like this with other autistic folks in the future, and it was important to me to exercise care and consideration for any after effects of this conversation.
So the final question I asked was Many other autistic people have told me that they sometimes find themselves having a lot of afterthoughts following a conversation like this.
Is that something that happens to you sometimes?
Are there any acts of care that you might like to ask of yourself or of me, or of anyone else in your care? Web to help process this conversation and any afterthoughts might visit you in the next few days.
As I received the written contributions and transcripts, I gathered sparkling stories and skills and sorted them, trying to put like with like and noting the common themes that arose. And I drew these together into a fairly loose structure.
An introduction in the collective voice, and then direct quotes from the contributors with minimal editing in its current form. And this could change in the future, probably will.
The quotes are gathered under these broad skills of knowing, naming and describing our experience skills of identifying and asking for what we need skills of sensory modulation, soothing and stimming skills of connecting skills of resisting neuronormative expectations so things like never give up, stay strong. Yeah.
Skills of boundary setting and a theme of expressing hopes and the final part of the document consists of an invitation to readers, which I also now extend to you, and an invitation to join in the evolution of this living document, which I also extend to anyone else here who identifies as an autistic adult with experience in dealing with autistic burnout.
I then sent the document to the contributors and asked for their feedback and especially to let me know if there are any parts they'd like me to change.
Again, this has been a very important part of the process.
In their responses, people told me about what they appreciated about the document in its current form. For example the flow, the headings, the editing, the choosing of what to add and how to edit and space the topics. And of course, the content itself. What an incredible document. I hope more people reach out and add to it too. Now it exists, it's going to reach people that need it, and it will reach people who have further contributions and ideas.
As a multiple neurodivergent person, I'm quite used to having a lot of unfinished projects hanging around, and to be quite honest, I often find myself getting caught up in shame and frustration and all sorts of neuronormative judgments about unfinished projects so it makes a really nice change to be able to say that how we deal with autistic burnout is an unfinished project.
It's a work in progress, and I'm 100% okay with that as a living document. I hope it'll continue to be a work in progress to grow and change, and then to grow and change some more, for as long as it serves a purpose for the autistic people who contribute to it and benefit from it.
I have a number of possible next steps for this project in mind. I probably don't have time to go through all of those right now, but I really anticipate that this is just the beginning of this journey. So thank you for listening and I look forward to hearing about how this has resonated with you and what that might make possible for you and for others. Others that you might be thinking of.
[00:32:35] Speaker C: Thank you for listening to this podcast from International Journal of Narrative Therapy and Community Work, published by Dulwich Centre Foundation.
More about this recording and a treasure trove of articles, videos and multimedia works are available from narrativetherapyjournal.org it's all free to access and share with no login required.
Dulwich Centre is located on the land of the Kaurna people. We acknowledge the traditional owners of country and pay respect to elders past and present.
