Unlearning Autism – Episode 2
Translating the World Through Sound with Abigail Ward — creativity, masking, and the Autistic voice
https://open.spotify.com/episode/6qA2BFLJRvwDp1zC0vq4ib?si=29pQaoT3RZuzH_wq0fjRUg
Christine Doyle
Welcome to Unlearning Autism. I’m here today joined by Abigail Ward. Abs and I have a funny… zigzag relationship that has started about a year ago when we crossed paths on Wild Women, a community group that I hold for late identified Autistic AFABs.
Since then, Abs has agreed to be my podcast producer. So this is a really special podcast episode for me and also the first of Unlearning Autism. Abs is a curator, music producer, DJ, writer, podcast producer, luckily for me, and project manager.
She makes music under the name Ghost Assembly. She also has a huge catalogue of creative work that honestly, when she sent me through today, it just kind of blew my mind and took my breath away. I’m really grateful to have had the opportunity to meet Abs.
She’s opened my mind to so much and in terms of creativity and also has really met me in the space where we’re kind of thinking about things differently. And I think her creativity really gives you a glimpse of that. I’m going to pop up her whole bio on the transcript section.
Sorry, I’m still getting used to my poddy words. So I’ll pop up the bio down below. But please do go and visit and listen to some of Abs’s amazing music.
I had the pleasure of listening to it this morning when I was getting ready for the pod and yeah it’s just trance-like it’s like nothing I’ve ever really encountered before and really appeals to my neurodivergent brain, so thank you for being here thank you for being you, for your creativity, for being my podcast producer and for being my guest today and welcome.
Abigail Ward
Thank you so much. That was a really lovely intro. and I felt quite exhausted after hearing all of those things that I’ve done!
Christine Doyle
Yeah, yeah, and proud, I hope. You just, yeah, it’s fantastic. So, yeah, thank you for being here.
and So, look, today I thought maybe it might be good to start with your Autistic experience, if that’s okay, just to what brought you to here today. What brought you to maybe identifying? This is a podcast for the experience of late identified and Autistic AFABs.
And I was wondering what brought you to your identification? What brought you to understanding yourself to be Autistic? Maybe we might look at some of that story and , what led you to identifying?
Yeah, because often I suppose for us, The journey to identification can be long, and but there’s and there is a part that may really kind of, okay, , I think I’m Autistic.
Abigail Ward
Yeah, very long.
Christine Doyle
This is Autistic here. But as we look back, there are so many other things that were there and the whisperings and the tendrils and the that more obvious and less obvious all the way along. So all of those will be part of us.
But I suppose maybe if we go more recently and then look back, , what led you to identifying as Autistic?
Abigail Ward
Well, I think it started probably about 15 years ago when I was having some therapy. And my therapist suggested that I might be what he called a highly sensitive person or an HSP. And he said that he’d been reading a book about this and I picked up that book and read it and related very profoundly to everything in that book and that identity as a whole.
But I don’t think I was ready at that time to fully understand that I was going to need to respond to that idea with making some life changes So I kind of took it on board in a in a fairly shallow way, I guess.
Christine Doyle
Hmm. Hmm.
Abigail Ward
I was like, oh, that’s me, but I’m not going to do anything about it. And I continued to and struggle in various ways.
Abigail Ward
Some time after that, my ex-partner adopted a little boy who I developed a very close bond with, and he was subsequently diagnosed with autism and ADHD, and that really, really inspired me to continue to research this particular topic very deeply. But running alongside with all of this, I was working for a charity that opens up access to music making for disabled and neurodivergent people. And I met a lot of Autistic musicians and during the 10 years that I was working for this charity.
And I began to see that the experiences that they were describing what were some of the same experiences that I was having. And I started to really question and wonder about my own identity. And it sort of became apparent to me that and I was caught in a difficult stage of questioning, doubt, rumination.
and to a certain extent, I haven’t really exited that stage, although I’m trying to focus less on the questions at the moment and more on the specific changes and accommodations that I’m looking to make to develop a little bit more comfort within my own skin.
Christine Doyle
I love that there’s so much in that I just, I think it’s worth just pausing with. This whole podcast is called Unlearning Autism. And it is a space of wondering and curiosity.
And a big part of that is the labels that we use and the boxes that we have to put things into. And we’ve spoken in the past, you and I and as you’re speaking there today, To come away from the words that we have to use and the justification almost because that is a big struggle for late identified Autists as well is that I need to explain to you how I am Autistic. I need to explain to you the labels that I use for myself.
And almost, kind of convince you or persuade you or educate you on what that is. And all of that is a coming away from, as you said, which is the really important part is, what? I know that I am Autistic.
I know that I am, I, I certainly am feeling I am Autistic. I, experiencing what that is like for me. And I want to get to know more for me, the accommodation adaptations that I can allow and encourage and lean into for myself and maybe advocate for myself then in terms of my relationships with others professionally, socially, and , societally.
And that sometimes the we get so caught up in the words or can I say I’m Autistic or, , how do I say that out loud or who do I say it out loud to that we forget the main part of it, which is as we understand what autism is, it’s looking at, OK, well, how can I adapt my world so that I can thrive more easily therein? And I just love. that piece there that you that you brought which is let’s come away from some of the words and let’s focus instead on well how can I how can I adjust and adapt how can I adjust and adapt the world around me and how I show up in that world that means that I’m able to be more me yeah without needing to yeah define it as black and white, as as much in a box.
And the other thing that I really just really struck me there as well is where you have tended to show up in the past, you and the people that you have noticed that you’ve surrounded yourself with. You were fortunate enough to have an experience where your ex-partner adopted a boy who and who received a diagnosis of autism and ADHD. And beyond that, you have shown up collaboratively and creatively in spaces where there are other neurodivergent people.
And I wonder, is that something that is luck? I just wonder about what is that piece? Because it’s something that I hear about so often in late identified community that as we look back to our life, Actually – I’ve always been drawn to those spaces where maybe other neurodivergent people are.
Or work in those spaces. I know a lot of psychologists, therapists, but also people who love, hikes, who love libraries are, who love creative work where we’re showing up, where there are a lot of. There are a lot of people who maybe also speak the same way we speak and feel the same way we feel and that we feel more comfortable around and that very smartly and very intelligently our body mind has sought those out and showed up in those spaces without maybe realizing that was why
Abigail Ward
Yes, I think that’s absolutely spot on. And what’s interesting about it is that prior to my life working with neurodivergent musicians, I worked in record shops for 12 years, different record shops in Manchester.
Christine Doyle
Hmm.
Abigail Ward
And looking back on that time and those people and those shops, I feel convinced that record shops are a place where neurodivergent people can really thrive and where their skills are incredibly important and essentially vital to the survival of these businesses. It’s an opportunity for Autistic people to use their focused areas of interest in enormously successful ways. and there’s a lot of, there was a building amount of research at the moment about and neurodiversity in the world of DJing and club land, where I’ve spent a lot of my time
Christine Doyle
Mm-hmm.
Abigail Ward
There’s been a book written about it by DJ called Harold Heath. Even the most mainstream magazine, DJ magazine, Mixmag, has done a an article about neurodiversity in DJ life. And so when I look back on all of all of the different things I’ve done and the places where I’ve spent my time, it is no coincidence that I’ve surrounded myself, I believe, with neurodivergent people.
Christine Doyle
Yeah. And look, it really brings me on to the next area as well, because you’re talking there about the strengths and the values.
And, when I’m listening to you, I’m thinking about all things, just thinking about the Autistic joy of systemizing, and organizing records and taking everything apart and starting again and finding ways that it really works well and just the monotropism; the ability to really deep dive into that and lose yourself for hours and hours joyfully blissfully in that task and how appealing that is to the neurodivergent brain and I’m just wondering about that part so in this unlearning we’re looking at some of the myths maybe that blocked us but what I’d like to lean in there is some of the truths that actually unite us. So the truths that unite us around seeing that, that love of systemizing for systemizing self, that in that space, it’s not it is also, yes, hopefully to have it all systemized and organized. But actually that space of systemizing, of filing, of organizing, of categorizing, that there’s so much joy and peace, in that space that I think I’m not sure is as accessible to those of us who are not Autistic, and I’m just wondering, because as I as I hear you talk about that, I really resonate with it.
And I’m wondering about, have you come across that, that those truths that unite us and that as you’re showing up more and recognizing yourself as Autistic, are there truth like that maybe you didn’t hear about? is part of the Autistic experience, but that you notice is something that does unite you with other late identified AFABs. Other people, not only late identified, but other people within Autistic community, that you see these things that maybe we don’t put as much emphasis on when we talk about autism, but actually would be so helpful because they are, know, areas that really give us more nuance to the truth of what it is to be Autistic.
Abigail Ward
Yeah, I mean, it’s an interesting question. I just think, returning briefly just to the subject of systems and systemizing things, I mean, I am an absolute maniac for creating systems and it gives me a lot of pleasure. I have so many systems for the most unbelievably banal things in my life.
And I really love well, what I leave the house with in my rucksack, , that there’s everything’s got to be in a specific area.
Christine Doyle
Such as, is there one?
Abigail Ward
I don’t leave the house without certain things in case, for example, a set of plasters in case something like that happens.
Christine Doyle
Yeah.
Abigail Ward
I know exactly where they are. I will continue to top them up if I use them. There’s a system attached to the to the replenishing of the plaster supply, or anything like that.
And what I particularly love is the honing of that system. And again, that’s something that I’ve used in those workplaces. and it tickles me that we’ve that we’ve got onto systems because it’s it’s when I did work in a record shop, it was such a joy for me when I was when I had a huge amount of records to file and I wouldn’t have to interact with any customers.
Christine Doyle
Yeah.
Abigail Ward
But I could get away from the counter and just file these records. That was great. and I also think, I suppose it’s natural that I would be talking about this because my life has been spent in music, but…
I can’t help but notice the relationship between and me and music and my Autistic friends and music. Some of my Autistic friends have the fascinating ability to listen to a piece of music and then play it themselves very quickly, which is not something that I can do. But I love seeing them just listen to a bass line and then just pick up a bass and just straight away.
Christine Doyle
Hmm.
Abigail Ward
play that. and But also just that depth of the relationship with music is something I’ve seen a lot of. and another thing I’ve seen a lot in my Autistic friends is a profound sensitivity and empathy towards animals.
Christine Doyle
Hmm. Hmm.
Abigail Ward
There’s something about communicating with a different species that allows Autistic people to put down any masks they might have to wear in day-to-day life. And there is something really profound about that level of connection with nature. And I think there’s something there.
I think we have a an extra capacity for that a lot in a really beautiful way.
Christine Doyle
Yeah, yeah. And, I’m even thinking about… Of course, that’s that because that’s what my brain does, is as you are saying things, I’m thinking about the web of what all of that means.
And that my mind is going off on little bits here. But, when you’re talking about animals and you’re talking about nature, and I’m just thinking about that reciprocal emotional feedback as well. Because often when we’re with animals and we soothe animals and we rub animals and we’re were able to attune to animals were pick picking back up of course the body doubling of their calm nervous system as well but without any need for verbal communication, without need any need for speaking and just that presence and yeah I think I’m just thinking as well that presence
Christine Doyle
Because when you’re in that moment with animals and I’m thinking about us, we’ve got two dogs here and we’re constantly with the dogs. But in when you are with an animal like that, The animal picks up a knowing of who you are. We don’t have to tick a box of responding with a text message later that day.
Thanks so much for meeting up or for me going back over my text messages and putting in fluff at the start and at the end. rather But I just want to say be there at eight. But I have to start it with, hi, Abs.
How are you but Blah, blah, blah, blah, blah. And then be there. I hope to see you at eight.
And then… And then all the rest. But when we’re with animals, because when I communicate like that and that directly, that feedback can be misunderstood.
But with animals, there is no need for that layer of communication. There is no communication. There’s a sense of who we are and there’s a sense of attunement to who we are.
And I know that I certainly feel that with other Autistic people as well. Not all, of course, we’re not all painted with the one brush and we’re not all the same, but a real yearning for being understood as who we are rather than how we show up. And I think with animals that can really, that’s something that I really feel with animals that there is they get who we are.
We don’t have to tick all the boxes and it’s just a pure acceptance and love and yeah, knowing.
Abigail Ward
Yeah, I mean, when you think about all the different questions that we might have about our various identities and ways of being, am I this, am I that?
Christine Doyle
Yeah.
Abigail Ward
There’s none of that with animals. They don’t need that information.
Christine Doyle
No, no. Yeah, it’s just simple and plain and clear and just the way we like it. Yeah, it’s beautiful.
And, as we sit with those truths, and there’s a number of truths there that you that you’ve noticed, because as I suppose that parallel identification is a huge opening of curiosity, and you kind of go, oh, I wonder about that now. And I wonder about that and I wonder about that. And the curiosity has led you to noticing the commonality that you share with many other Autistic people, which within your circle, of course, is the depth of relationship with music, but is it is something that we notice a lot with Autistic people in general.
Well, there’s safety as well, isn’t there? There’s safety in the music. There’s also repetition.
There’s sameness. I can trust that. that song is going to make me feel a certain way.
It’s not going to be overwhelming for me because there’s a knowing about it. and I’m in my own world. I’m in my own space.
But there’s so many there’s so many aspects to music. and I know a deeper aspect to music, as you’re talking about there with and the musicians and creatives that are in your world, and empathy with animals and our love of systemizing and that the joy of the act of systemizing as well as the end product please God we get there. Sometimes my ADHD can impact that part of it, but the love of systemizing still stays.
And they’re all lovely truths that do unite us and, , unite us with wider Autistic community as well. They’re not specific to, to late identified as we’ve touched on there with animals and with music and, and of course systemizing. But I’m wondering then as well about, , the unlearning piece, because, There are so many of us that are only understanding that we are Autistic at a later stage in our life.
And it really leads me to wonder what are, what blocked us from seeing ourselves? Because as you, as , and as you’ve spoken about there today, the more that you are aware and kind of looking at how, how your life is for you and how you are adapting to ways that make your, make your life better for you through the Autistic lens. there it’s looking as well at, well, what stopped us from seeing that before?
What are the, the myths that were there that maybe, and we encountered before and that really still make the identity of being Autistic inaccessible for so many people are to those around those who are now exploring identification. And there are some fairly core deep myths or societal deep myths that still exist around autism. I wonder, is there any, as you look back, as you said, it this has been a kind of 15 year journey for you.
But as you look back, are there any myths that caused you to, , come away from that or our stumble around that or doubt yourself or really think became blocks for you and in that 15 year process or even beforehand are myths that maybe you just absorbed as what you knew without knowing them but what but what was societally fed around what autism is that maybe now not to be true.
Abigail Ward
Well, I think many years ago, sadly, we’ve all been fed possibly the most damaging myth of all, which is that Autistic people don’t experience empathy.
Abigail Ward
And I was fortunate to be disabused of that particular nonsense early on by virtue of the fact that I was working for a fantastic disability rights organization. And, , we’ve said in recent conversation, , empathy is distributed in in a in a variety of ways across the neurotypical community, as it is across the Autistic community. and I’ve met many neurotypical people with no empathy.
So that’s one thing that is has not been useful. But I think… sort of and For me personally, the things that have been more difficult with my personal identification have been some of the ideas and relating to things like social cues and the idea of maybe taking things literally These are certainly, , it’s it’s certainly true that many of my Autistic friends may struggle to interpret certain social cues and I know I have one dear friend two who explains to me she’s often taking things literally.
So these things aren’t myths. They don’t apply to me. I feel that I live in a world where social cues are incredibly loudly experienced.
And I’m constantly reading social cues and feeling overwhelmed by them. And also I live in a world of nuance and complexity and metaphor. It would be unusual for me to take something literally.
I’m often accused of… confusing people with my level of sarcasm and irony and metaphor. And so I’m kind of interested in in these aspects that do exist and very much as traits, but not necessarily within everyone.
So I guess the myth here is that all Autistic people are the same. But I’d be particularly interested to hear your thoughts on the subject of sort of social cues and nonverbal information because, you’re a psychotherapist. So I imagine you must have to be attuned to those things.
Christine Doyle
Yeah. And so overall, what we’re saying there is no, no two Autistic people are the same. And when you’ve met one Autistic person, you’ve met one Autistic person.
And I say that and I speed up as I say that because but blah we’ve heard it all before. , when I met one Autistic person. Not meant in any disparaging way to you Abs, but we hear this, but we don’t listen to it.
We don’t. And that’s what I really love about what you’re saying today, because when you describe something and the language that you use, it makes me hear it in a totally different way. Because when we have met one Autistic person and when I’m meeting you and when you’re meeting me, we’re meeting a person an Autistic person yes but it’s a person and we are all unique people and how we experience the world is unique. And then to go into empathy, to go into social cues, to go into taking things literally – all show up uniquely and differently for all of us what I think sets us apart is that they are impactful for us.
We talk about hypo and hypersensitivity when we’re talking about the Autistic experience or any neurodivergence, really. We’re talking about hypo and hyper, that it’s not neuro normative.
It’s not easygoing. It’s not, laissez faire sure, whatever, taking things literally can also mean that we’re very careful with our language, that we really, really notice the words that we use and we want to be very careful with the words that we use. Some people will say that we’re black and white or some people would describe that as black and white.
Some people describe that as blunt. Some people will describe that as taking things literally. some yeah There are all different ways that this communication piece can show up, but it does often set us apart.
We’re often not beige in the middle, . We do speak in ways that are sometimes hyperlexic, sometimes quite straight, are very direct and to the point. We can take things, we can take things quite literally, but we also have been have the impact of trauma of where things have been taken very literally for us.
So we can be learned to be very, very careful and hyper empathetic and hypersensitive to the words that we use to others and, and how others are using words to us. From my experience – from my experience professionally, from my experience personally, and, obviously I’m always reading up on things. I’m a, I heard this word a long time ago, a bibliomaniac and I love it.
I think it’s meant disparagingly, but I just love it. And like, I aspire to be more of a bibliomaniac. So I love books and reading all these things.
And when we, when I’ve gone off on a tangent now, but when we talk about it and taking things literally, and yeah, we overlook often the, impact of being late identified the impact of being a woman who’s late identified who is socialized to be nice and be polite and be respectful and be kind more so certainly in my experience more so than males around us or those who are born male around us so some of these things, some of them may be more embedded within us. Some of them may be more natural to us. and Some of them may not, in terms of taking things literally, in terms of careful language.
Some of us may be more maybe more natural in terms of the language that we use, might be more direct. Because our brains might be, well, my brain I know is very, very busy, gets very overwhelmed. So I want to just write things down quite frankly.
And then, as I said, make that softer. But when I am feeling stressed or when I’m feeling overwhelmed, that capacity is much more limited. So my natural state is for things to be quite literal and direct and straight.
But what you’re talking about there is beyond that. It’s the social cues. It’s the metaphor.
It’s the nuance. It’s the and it’s it’s picking up on the nonverbal language. And again, I go to the trauma element.
I think we are so highly tuned to being taken to being picked up wrongly. , the feedback has always been, hmm, , are why did she do that? Or, , what was that about?
Or again, very little time maybe spent in the beige area that we become experts. We can become experts in social cues. We can become experts in looking at it how we are being received by the person in front of us, what the feedback is, because we’re safety seekers.
We’re looking for safety. We’re looking for safe spaces. And those safe spaces are important.
organizing the records at the back of the shop those safe spaces are in creative community with others who are very liberal minded and out there the safe spaces are with animals and the safe spaces are where we create them in our social spaces where we are very highly attuned to social cues where we pick up on things very quickly and so I believe that a lot of them are honed and then as we take away the trauma as we pair it all back. There are many of us that always knew how we believed and always knew how we were presenting ourselves in societal situations, but the feedback was wrong.
Abigail Ward
Thank
Christine Doyle
So we kind of let that go and we took on the external feedback instead. But as we pare that back and let go of some of that trauma or work through some of that trauma, Actually the gut instinct that we have and the natural instinct that we have, in my experience, is very strong. It’s just, it’s been it’s been misunderstood and misconstrued and has led us to areas of unsafety.
And so it’s been it’s been changed and it’s been altered and it’s been bended and tweaked and molded. But that, so the social cues element, , again, this is my way that my brain goes, but the social cues element. Yeah, I see it all the time.
I see how we’re visual thinkers. , I see how we’re hyperlexic. We use we use words and we love words.
I see I see us being very attuned to how other people are around us and for those all of those reasons and many more that I’m not even and touching the surface of. and is I’m just wondering how that lands with you when I when I’m talking about social cues and that my understanding of it or my experience of it or my way of by way of understanding how that the social cues that are there for, that how we interpret social cues and how we absorb social cues. I’m just wondering, , how that feels for you when I, when I, when I talk about it in that way.
Abigail Ward
Yeah, I mean, there’s there’s a few things that I’d like to pick up on with what you said there. One of them is that it’s very, very true that I think carefully about how I want to express myself. And…
Christine Doyle
Hmm.
Abigail Ward
and Words are a huge passion for me, but one of the reasons I think why that is because it’s vitally important or it feels vitally important for me to get the message across correctly and accurately. And I’ve often wondered whether this stems from some sort of… earlier life of feeling misunderstood in some way, therefore I’ve developed this way of kind of reviewing myself.
But I don’t have a real memory of of that, of sort of maybe coming across in a way that, , is open to misinterpretation. I know that… and Going back to my time in therapy with this particular therapist who identified the possibility of me being HSP, and he used to joke with me that I was like an investigative journalist who had to sort of report on every aspect of my life in a fair way.
So even if I was there to talk about my problems, I would be giving this very, very carefully report sort of thought out 360 degree view of, well, they might have been thinking that on that day, and desperate to sort of be accurate.
Christine Doyle
Hmm.
Abigail Ward
and he said, why you so obsessed with accuracy?
Christine Doyle
Hmm.
Abigail Ward
Why do you need to sort of to talk in this way with it with this sort of constant thread of being accurate? And I couldn’t really answer that. So…
so , it’s it’s the peeling back of the layers that you’re talking about is not is not really something that I’ve had perhaps a lot of time or opportunity to do yet. The other thing that I just wanted to pick up on was that I’m particularly interested in the idea of hyper and hypo sensitivity across the Autistic experience and in many different traits and how those may vary day to day, which is something else that non-Autistic people may struggle to understand, how something is problem on one day and how it isn’t on another. So hyper and hypo is a bit of a an overarching theme to my discovery about myself at the moment.
Christine Doyle
Yeah, and I think, , it is overarching in our discussion today. And it is that it’s it’s what it’s it’s that we are not beige. We are not in the middle.
We can be hypo or hyper in many different situations. We can be very communicative and then not have capacity to communicate. , we can want to systemize everything in the record shop and then have no energy to do any of it.
And it’s, and those can be fluctuate throughout the day, can fluctuate throughout the situation, can fluctuate throughout our lifetime. And it can be something that’s often misunderstood about us because it’s like, well, you could do it yesterday her you used to be able to do that. And this hypo and hyper in terms of capacity, in terms of feelings, in terms of sensitivity, in terms of communication, terms in terms of ability to show up socially, there it’s just everywhere.
and, and, and is something that I think is and a real take home from today, , just being, being more open and curious to that. I wanted to just move on to I suppose an area that I find that has been a big motivation for me starting this podcast, which is the, the divide that I really feel in Autistic community. Something that held me back from starting this podcast was and a fear of saying the wrong thing.
and There is so much still that is unknown and around the Autistic experience. I really feel that we’re in this decade of and exploration and of opening up an understanding of what it actually looks like to be Autistic from a wider perspective and not just with the perspective or the personification of autism that maybe many of us grew up with. But in that exploration, there can be pushback and there is a growing divide Unfortunately, I felt more in the last six months than I’d ever felt it.
growing divide in Autistic community where there’s there seems to be a tension that if you are understanding the late identification experience, that you’re almost taking side against those who are identified earlier in life. and I’m just, , a big motivation for me in this podcast is to and name that divide, but also explore and what we need to learn a little bit more because that divide is there, first of all, because Autistic community, well, we are all very careful in our thinking and we’re all we all we want to be very honest. us We want to be very truthful.
We want to be very congruent in how we are. And so, and we want to know, know, there’s a real yearning to know. And so when we know, we know, and there’s a huge piece that comes with knowing.
And this late identification autism that is, , common parlance now, like it’s popping up everywhere, is really testing that in some of the more established Autistic community, because this is something that I knew, and this is something that I know. And now that all seems to be kind of up for discussion again. And I’m just wondering around that piece of tension or that piece of and conflicting sides in Autistic community.
Is it something that you have felt? Is it something that is and it’s difficult for you as someone who is exploring her neurotype? Is it something that you like?
, as I said there at the start, I feel tentative around even opening up conversation about autism because I don’t want to do any harm. I don’t want to cause and upset to anybody yet Without acknowledging it, we’re overlooking the elephant in the room because it is there and there’s a reason why it’s there. And I’m just wondering, , have you noticed it and what your thoughts might be on it?
Absolutely.
Abigail Ward
Well, a couple of years ago, I was spending an awful lot of time on social media and I was relentlessly sort of researching the subject of autism. And I would see a lot of… , sort of aggravation on between people on certain topics.
And I think that the same could be said of any topic that is discussed on social media that it that is, emotive and important in people’s lives. So I think the first thing to say is what is Autistic community outside of social media? What is the discussion and the temperature of the discussion like in those other places?
and at this point in my life, I don’t really feel like I belong within an Autistic community, outside of the things that I’ve shared or read on social media, really. I’m not going to conferences and lots of my friends who I consider to be Autistic may not have arrived at that conclusion themselves. It may not be something we talk about.
But I am aware of lots of sort of division in all sorts of different areas. One area might be you and parents who… Might have a recently diagnosed child, for example, who might be experiencing a lot of barriers, experiencing enormous difficulties at school.
Christine Doyle
Mm-hmm.
Abigail Ward
A lot of those parents seem to be a little bit offended sometimes by the late identified Autistic person and what they perceive to be that person’s privilege or easier ride. And I really understand but what’s happening is people are speaking from a point of desperation. They’re not being understood.
Christine Doyle
Mm. Mm.
Abigail Ward
They’re not getting the fundamental support that they require in a basic and practical way. The system, certainly in the UK, is absolutely fucked on every level. And people are desperate and what I think is the trigger for divide is that is the lack of deep listening on both sides.
And I think I think what really provokes that and increases that division is the discussion of things on social media. When you can’t see somebody’s face, you’re not interacting with them as a fellow human being. and so I feel that, stepping back from our own situations, listening very deeply to people with other opinions and asking the simple question, where does it hurt?
Where are you hurting?
Christine Doyle
yeah
Abigail Ward
and listening carefully to what that answer might be before we react and we judge and we stick our flag in the sand saying, this is where I am and this is where you are.
Christine Doyle
me yeah I just love that piece about deep listening And to have deep listening, I suppose it’s to it’s to come away from fear. It’s to come away from assumptions. It’s to come away from, as you said, that kind of hole in the sand.
This is where I am. Where are you? But I’m staunchly here.
and that deep listening space, I think, I’m hoping that there’ll be deep listeners here on this podcast because they’re the people that I feel this podcast is for, it’s the people who are open to reflection, open to listening deeply, that may have a lifetime of experience of what autism is for them, but that when we have a level of curiosity, and just that maybe, maybe we all have a lot to unlearn and learn, maybe we don’t have it all sewn up, that maybe I can sit here and listen deeply to what you have to say and reflect and let it land and let it land again and maybe allow some of it in. and I think that capacity for deep listening is there with people who have a level of curiosity around this space. And I suppose where maybe the tension lies is for people who believe that there is no need for curiosity, that they know what they know and they do know their experience, of course, and they do know their struggle and they do know their suffering.
But there’s a lot around the wider Autistic experience that I think many of us do not know. And I do want this to be a space for deep listening and so that we can all learn from each other. Because I do the feel that part of the tension as well is that the answers aren’t good enough.
, that the explanation of autism really isn’t good enough because it’s not clear enough. and It provides it provides fertile ground for a lot of confusion. There’s so much ambiguity and vagueness and wondering and, And yeah, all of that and in this, that and it’s it’s a really, it’s a tough space to be in But I think if we can approach it with a level of, I’m going to listen here and see, what do I, what am I hearing and what but is landing for me?
I think we’re going a great way towards bridging some of that divide and some of that polarization that is there. And, it reminds me of – was describing this to my sister recently and I said to her – it’s like I’m a big Take That fan. I just love take that and just love the poppiness and the positivity and all of those old hits and everything.
And it’s like if you came along to me and said, no, look, U2, they are the best band in the world. And I might sit there and I might listen and I might nod along and I’d be very polite and, , all the rest.
But there’s absolutely no change in the fact that I know Take That are the best band in the world.
Christine Doyle
And poor you almost like that. You, though, don’t know that Take That are the best band in the world. But I’ll allow you go on and I’ll allow you talk.
And that may be polite and that may be nice, but it’s not helpful. And we’re not learning. And we’re not when we’re just experiencing and sitting there and allowing someone to talk without allowing it into a part of us that can deeply listen and deeply hear this and maybe just question it for ourselves and think about, it okay well, what do I really know to be true?
And what is there in the unlearning or in the curiosity or in the deep listening that maybe there is space for? Because if I always just believe, take that or the best band in the world, and i’m I’m limiting myself so much. and Obviously, I’m talking in a very, very frivolous terms here.
But and but that capacity to deep listening, if we can access that. deep listening and people if we can access that that space within them where they are sitting with us like I am with you and you are with me today and just openly wondering, , what can I learn from this experience? And because this person really feels this deeply for a reason and as a human being, what can I learn from it?
I just think we it’s almost the opposite of the divide that I started off this the segment talking about. It’s almost the opposite of that. As you said, putting your poles in the sand.
It’s just both of us meeting in this unknowing and just wondering and hopefully both coming but to a more gentle understanding with having that capacity for deep listening. So yeah, another hopefully lovely take home from today.
Abigail Ward
Yeah, I mean, I just, I think one of the great things about a podcast is it gives us the space explore things in and a much deeper way than you would get, in average communication on social media. And I think that we, if we don’t, as a society, start developing much more curiosity about other people, and unless we start celebrating the ability to change one’s mind, then we’re in serious trouble because this podcast is about evolving knowledge.
Christine Doyle
Hmm. Hmm.
Abigail Ward
It’s about a changing situation. It’s not about putting an opinion across and rigidly sticking to that because that’s your opinion and you’ve cleaved to it in such a way that you can’t change your mind. In our culture, changing your mind about something or broadening out your understanding is seen as a as a weakness, as a U-turn.
And I think that’s really problematic. So we need to celebrate evolving and developing different ideas together because we’re living in very dangerous times.
Christine Doyle
Yeah I love it so much it sounds – so – okay I don’t know I’m trying to look for a nicer word than okay but it sounds like when we talk about living in a space of just openness and curiosity and wondering and allowing rather than having to know and be very definite and letting go of all of that expertism and all of the labels, as we started with our conversation today. Yeah it’s just a space where you can breathe, isn’t it? It’s just a space where I feel I can breathe, and I don’t need to have all the right words.
Abigail Ward
Mm-hmm.
Christine Doyle
And yeah, and the more that we can lean into that, I think the more that we can learn, . Today then, we’ve spoken a lot about and your identity and what are, I know you’ve spoken a lot about questions that you still have and, I’d love to explore these questions a little bit further and I’ll certainly be left thinking about them a bit more as well but what are the what would be some of the main questions or our main question that you still have about your identity? Because I know and before we even started recording today, and we kind of spoke about that a little bit, that, is there ever a space where, where, where that is there, that is known, and I suppose the unknowing and the unlearning and the, and the openness is what the podcast is about.
but what questions or what is there for you today about your identification or where are you today around it or what questions are still in the ether swirling around and your your identification as being Autistic or neurodivergent or how you are identifying?
Abigail Ward
I think I continue to be interested in the subject of the highly sensitive person and its relationship to autism. And I suspect that, in 15, 20 years time, the way that those two ways of being are currently isolated may not exist in the same way. Something else I think that is a big question in my life at the moment is…
working out what I can do for a living ,and that is more accessible to me than the work that I have done so far. I think that’s probably one of the biggest questions that hangs over my life, is that I’m capable of working in a variety of ways. It’s just that…
I’m prone to burnout and I’m yet to find a a career path that allows me to work in a way that’s really safe for me and really comfortable for me. And so that’s something I’m thinking about a lot. I know that I’m a single tasker.
I know that I love to go deep into things and work more slowly than other people in a methodical way. And in the society that we live in that kind of way of being is not easily rewarded out there, possibly outside the realms of academia, for example. So I think something that’s, possibly a struggle for other late identified people is just what is a safer work path for me and how can I how can I find that and move towards it?
Christine Doyle
Yeah, when you talk about those aspects of yourself that are that, are your huge Autistic strengths, that you are single focused and you lose yourself to projects, you go deep, you excavate, you find the parts, you are methodical.
I imagine don’t bore easily, when you’re with that task. I mean, to me, they just sound like skills that are so valuable and so needed in this kind of surface-level world that we seem to be living in. We’re kind of skirting the surface of so many things and not actually going deep and not questioning further and not spending time with and not excavating and not getting to the grassroots and not really thinking.
Finding meaning and the authenticity of each and every experience. I’m thinking, again, about researchers and I’m thinking about, archiving and I’m thinking about musicians and I’m thinking about deep conversations, and I’m thinking about, yeah the joy that I’m experiencing today in the deep conversation and, and how it just feels so right. and yet also the very real struggle that, as you said, it’s not very highly rewarded in this post-industrial revolution world we live in, where it’s all kind of tick, tick, tick and move along and tick, tick, tick and we’re judged on that.
And, I think it is an area that does need more exploration about where are spaces that we thrive more. I know. For me, it’s always been working for myself.
It’s always been hidden away. But it’s also always allowed lower capacity, that there are days where I just don’t have the capacity to work to the level that on other days I can or that my clients deserve or my work and would be able to produce any level that I would be proud of. But that level of adjustment is very difficult to find.
And yeah, I’m heartened to hear that is your goal, and even that level of knowing of the self that this is what’s really important to you and finding a job, knowing that those are the goals, because it’s not often what you would hear maybe on someone’s goals for it for a job. yeah more likely would be salary and bonuses and holiday days.
but
Abigail Ward
Yeah. Yeah.
Christine Doyle
But for us, it’s it’s very different. It’s very different. It’s knowing that I have the capacity to work at the level, the depth where you get Abs, that’s where you get, yeah, yeah, that the work that you can that you that you are here to do.
Abigail Ward
yeah
Christine Doyle
Yeah, so.
Abigail Ward
Yeah, I just think that a lot of freelancers probably have the same experience that I do of just having to do lots and lots and lots of different things in order to get by. And, I’m passionate about everything that I do. It’s just that I have to do lots of different things and it’s really hard as a single tasker to keep all of these different plates spinning and I do that and I think the people who employ me get a fantastic deal but but burnout is a an issue for me and for our community yeah
Christine Doyle
Yeah. Yeah. There’s one more area Abs that I’d like to and look at.
and it’s an area that is underexplored in women in general and in Autistic women in particular. And that is the interplay of hormones with the Autistic experience. And this is something that started to pop up for me in my therapy room.
And then as I spoke about it in Wild Women Community, it came up more and more as well. And as I started researching it, and what I noticed was a trend that a lot of people become identified at hormonal transitions in their lives. So whether that be puberty, whether that be postpartum, whether that be perimenopause, but it’s at this kind of this interplay or this intersection Sorry, I just banged my mic there.
I’ll be in trouble with my podcast producer later! But it’s at this intersection and where where hormone where there’s a big change in hormone levels that often people become identified. We know there’s a huge plethora of people becoming identified in perimenopause and another time in our lives when people become identified is in puberty.
And I’m just wondering, do you feel that your experience of hormones and physically or emotionally has been different from other people around you, other non-Autistic people around you. And is it something that and was part of this exploration for you? Or is it something that maybe has been, yeah, a cog in the wheel of all of the different bits of information where the world feels different for you?
Abigail Ward
Yeah, it’s been a huge part of the process. I think I’ve had a very confusing experience of perimenopause, which I think for me probably started around the age of between sort of 40 and 42, which was around the time that the pandemic started. Yeah.
And what was particularly difficult for me was I knew that my anxiety levels were incredibly high. They’ve been high my entire life, but they were higher than the normal. There were changes happening in my body.
But it was really confusing to work out what was what. I know that a number of women, when they took the vaccine, experienced changes in their periods, which I did hugely.
Christine Doyle
hmm
Abigail Ward
So for a while I was like, oh, I’ve had the vaccine and my periods have gotten really wonky. So is it the vaccine? Is it, am I feeling anxious about, reintegrating society into society?
Cause we’ve been in a lockdown, everybody’s anxious. We’re all anxious.
Christine Doyle
hmm
Abigail Ward
It was a really, a really tricky time. And then there’s, the question of, of neurodiversity. I mean, most of my, the sort of friends who are experiencing perimenopause and have been affected hugely regardless of whether or not they’re neurodivergent.
So it’s been really sort of muddy area. But I would say that I think as with a lot of things to do with and autism, it’s about the extremity of the experience.
Christine Doyle
Yeah.
Abigail Ward
So we all know that a lot of people will say, when you describe an Autistic experience, I do that, or I and that’s meant very lovingly.
Christine Doyle
Mm.
Abigail Ward
It’s meant it’s meant to make you feel less alone, although sometimes it has a minimising impact on us as Autistic people. So, I was being, a lot of people thought, that’s happening to me. we were saying that there was companionship.
But I think the sort of severity of my experience and emotionally was an indicator. , I do have lots of physical symptoms of perimenopause that are difficult, but they’re not the not the headline, really. The headline is stuff that is going on within me, sort of in terms of emotions and confidence and…
Those sorts of things. So I would say that it’s been a complex picture and it’s it I’m still in the process of trying to unravel what is helpful to me at this time.
Christine Doyle
yeah thank you absolutely I know it’s a vulnerable space I don’t really know why it’s vulnerable why are we so vulnerable about our hormonal life when it’s such a huge part of us, but it is a vulnerable space. It feels a little bit more like I’m, that we’re seeing each other like, yeah like a 3D scanner, like just feels a bit more penetrative, and this hormone talk. And I really appreciate you speaking so openly about it.
So thank you very much. And it is, and it kind of goes back to what you were talking about when you were describing yourself as an investigative journalist and with your therapist, when you’re looking at HSP. And it’s this, because our language, we want to be really careful with our language.
We want to be understood. We also want to understand ourselves because everything can feel quite overwhelming and confusing much of the time. And then when you enter into perimenopause, it’s like, OK, well, is this the pandemic?
Is that is are my anxiety levels just heightening for other reasons? Is this perimenopause? What is this?
And it almost a needing to kind of know that an answer, know the answer. And even that, of course, we know is a very Autistic trait, or a commonality among Autistic people is that really, I don’t want to call this unless I’m absolutely sure it’s it. We are so careful with our words.
We don’t want to over egg. We want to be quite precise. We want to make sure that we’re understood because it can be misunderstood.
Or maybe we hear other people use the words quite… Lacks daisily .. but this is what it really does feel like and so that can that sensitivity to the words that you use and that difference of experience as well is a common thread really isn’t it as we look back. That being really careful, but it can it can scupper us then because again when we try to define perimenopause how do you define it – is this menopause is it not menopause it’s not as simple as a blood test or although some medics would have you believe it is but it’s not because obviously our hormones can change day to day hour to hour so and when I was looking through the list of symptoms around perimenopause and menopause and peppered throughout will be lack of confidence, anxiety, but, but the main focus is the physical symptoms, the hot flashes, the sweats, the, I’m confused now. So my mind is kind of going, but like all of those, all of those are really there as the priority, the physical symptoms, the change of course in bleeding, the change in how we bleed, and it’s almost like we water down and just, we put in loss of confidence there and we put in anxiety there.
We kind of minimize it to not scare people. Whereas for Autistic people, that is 100. Again, the physical things are there, but discomfort, I feel, is something that we feel a lot anyway, .
So it’s adjusting to that discomfort level. and may not be as impactful for some of us, and not and’re not speaking for Autistic people in general, but it’s the really acute change in the sense of self that can feel quite extreme and that we are very sensitive to. And that is a huge part of the perimenopausal experience, I think, for many of us.
And one of the studies that was done recently, I think it’s Rachel Mosley. Apologies if I have miscredited. But it’s When My Autism Broke is what the study is called, because it’s kind of like all those things that, yes, I’ve been struggling with on a low level, but I’m OK.
You know, everything’s OK over here. I’ll just be in the back, don’t worry about me. And it’s when all of those, all the balls just begin to drop.
And it’s just too hard to keep everything going. And I think that’s when the questioning starts for many of us. That it’s yes, everyone is experiencing perimenopause, but not everyone seems to be withdrawing the way I am or not everyone seems to have to be talking about the that the cognitive and emotional stuff as much as the physical stuff that’s where people seem to be talking more about it I think the impact that it has on on those who maybe until then weren’t questioning their neurotype quite so much it becomes a place where you can look back or where we now see that maybe… it’s looking at someone who was managing with a lot of effort and is no longer able to manage to the same in the same way and I because I did a study and I asked it on and on Instagram and I asked 101 asked but I asked for whoever wanted to fill in the form on Google and 101 women came back with deeply personal essays, of course, because we are investigative journalists and we do tell all of the story and we don’t want to leave out detail in case that one area of detail is actually the missing clue, or the thing that will either confirm or deny the experience.
Abigail Ward
Yeah.
Christine Doyle
So we have to put it all in, and yeah, the experience that of Autistic women with their menopause is different and it is more extreme and it is frankly very precarious in terms of safety and in terms of living and conversations like this might help. It would be helpful, I think, in terms of reverse assessment,, that if someone is showing up in a gynecological office or in a GP’s office with a lot of these symptoms in an extreme way, are feeling them very extremely, Wouldn’t it be great if that was a real indication for a reverse assessment, that we look at assessment because of those things? But again, because of the little amount of studies that have been done on Autistic, or on women, but Autistic women, and then hormonal Autistic women, with so many variable parts, of course, because that’s the experience of being a hormonal Autistic woman, and We don’t have access to that, but I think, and, personally, that it would be great if we are showing up as feeling these things very extremely, these hormonal transitions very extremely. Wouldn’t it be great if that could help people understand themselves better?
Abigail Ward
Absolutely. I think you’ve described it so articulately there for me. This was the time that I couldn’t ignore my difficulties anymore and I had to make my life a lot smaller.
Everything was about reducing. And our ability to mask, I think, is hugely impacted by perimenopause. That’s certainly what my partner tells me anyway.
Christine Doyle
A new Abs! Fuck it, Abs. Yeah it’s true when all those other balls are thrown into the mix, it becomes near impossible to mask and look.
Yeah. In so many, in so many areas and it just becomes undeniable and very real and very visible, to the self.
I wanted to, finish up our conversation Abs.
I feel like we could stay for like five days, just move in with me and we could talk about all of these things to the level that I really want to talk to the talk about, with all of them, with each area within each section. But I really want to thank you so much for being you for being real .. you here talking in such an unfiltered and unmasked way and sharing that with the wider audience and with society. We need conversations like this, and we need voices like this, and we need to hear these words .. because we need things to be better for us and we need change and we need deep listeners, and we need better understanding.
So I really want to thank you for being here and being so open and deep with me. I really appreciate it, and I know those out there will really appreciate it too. So thank you so much for being you.
Just as a final, what would you like to maybe leave today with? Is there something that you’d like to say to those who are maybe trying to understand themselves better or who are in this process that, we can rush to a sugary answer, or we can rush to a sugar piece to end these conversations with. And that’s not what our conversation has been about today.
Our conversation has been about being raw and real and open and, not knowing and the struggle that lies therein. And I’m just wondering if there is someone out there who’s listening and is curious and is wondering and is dipping in and dipping out and not sure. And, in that space that you and I know so deeply, is there anything that you’d like to leave them with today?
Abigail Ward
Well, I was looking at your Instagram again recently before this interview and you posted something some time ago about how you spent a lot of time searching and trying to get to the bottom of things. And you, I can’t quite remember how you put it, it was very beautiful. But you said something about it was only in letting go of that search and that analysis and that investigation and sort of just moving towards light and what brings light and relief and that you found parts of yourself.
And I think for anybody that is furrowing their brow and ruminating and asking themselves 3000 questions every day, as probably as I continue to do, I would say that, maybe… Maybe that search is fruitless because there is no answer at the end.
The thing that you’re looking for, certainty, doesn’t really exist. And it is probably more fruitful in many ways to just consider what is what brings light into your life rather than a perpetual quest for particular certainty or definition.
Christine Doyle
I love that. I’m really going to take that for myself today, Abs Thank you very much. And I wish it back for you as well.
Abigail Ward
Thank you.
Christine Doyle
Yeah. Thank you.