The Middletown Centre for Autism Podcast
The Middletown Podcast features interviews with leading thinkers and practitioners across the autistic and autism community. Conversations are autism-affirming and neurodiversity-informed with a focus on the lived experience and knowledge of our community. Episodes highlight issues impacting autistic people and we share ideas for family members and school staff who are providing support.
The Middletown Centre for Autism Podcast
Monotropism with Joan McDonald
In the latest Middletown Podcast, we speak to Joan McDonald, autism advocate, consultant, specialist teacher and trainer. Joan has a wealth of knowledge on many topics, but for this episode we’re chatting about Monotropism. Joan shares a practical perspective informed by research and lived experience. She explains exactly what Monotropism is and how we can support monotropic thinking.
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode I chat to Joan McDonald, autism consultant, specialist, teacher and trainer and amazing advocate for the community. I've been lucky to have lots of fascinating chats with Joan about the topic of monotropism and I finally got a chance to record one of them for the podcast. Joan has such a wealth of knowledge on the topic and she has such a practical understanding of how embracing monotropic processing could make such a difference for autistic folk. I always love chatting to Joan. I always come away thinking about things in a slightly different way. I hope you enjoy our conversation, Joan. Thank you so much for joining us on the podcast. I'm delighted to have a chat to talk to you. I suppose I wanted to start with a difficult question, I think in a way how do you define monotropism? Huge question.
Speaker 2:Huge question. I think the name is probably longer than the explanation. We know all brains are different. That's neurodiversity and monotropism. It's a natural feature of brains, um, and people who are monotropic are.
Speaker 2:I suppose we all pay attention to things and you might have been in school and the teacher said pay attention, there's only one other thing we pay, and that that's either money or taxes. And we only have so much money and so much tax to pay. And with monotrapsin we only have so much attention. And some people are able to flit and float their attention all over the place and take in little bits of everything. And we need that. And some people have really focused attention and whatever they pay attention to, they're completely engaged with that, or maybe with a couple of things, but they're missing all the other stuff. So they're the specialists. So, just in terms of neurodiversity, we need that in the world. We need people who are generalists and we need people who are specialists.
Speaker 2:And so Dinah Murray and Gwen Lawson and Mike Lesser invented this theory of autism and it is just a theory at a time when all the other theories about autism were very negative. All the other theories were looking at well, what is wrong with the autistic person, maybe they lack theory of mind I won't even mention them all because they're all negative Whereas monotropism it's not value-laden, it's neutral. But it obviously depends on where you land in life as to whether it is a disadvantage, a disability or not. So that's really monotropism, I suppose. In general, because we pay attention to certain things, those things can become great interests and people talk about the focused interests of autistic people as if they're odd and wonderful things. And then some people also think monotropism is only focused interests, but actually it's taking a step back. It's how we pay attention and then our interests kind of guide what we pay attention to, which, in terms of education, is a really useful thing if we know what the child is noticing. Now, really interesting about monotropism, because autism was seen as being so negative for so long that Self and Dinah and other people used to talk about. I mean, could how monotropic you are be a test for how autistic you are and then the autism assessment wouldn't be so negative?
Speaker 2:But it took until a couple of years ago when valerie garot, who was um being supervised by dr sue or professor sue fletcher watson up in edinburgh, she put together, with the help of loads of autistic people and the monotropism questionnaire, which kind of had a pretty broad scale, lots of questions, and you put in where you fitted on those and she put it out over on Twitter back when it was Twitter a few years ago and got a thousand two hundred responses of people looking to see how monotropic they were and about 800 of them two thirds, were autistic and the rest apparently weren't autistic. And she also put out screeners for autism and she also asked people were they autistic? And she also put out screeners for autism and she also asked people were they autistic? And she also asked people did they have adhd? And sure enough, it turned out that autistic people were very monotropic. But then surprisingly, it turned out that people who had adhd were even more monotropic and that the adhd people with both were the most monotropic of all.
Speaker 2:So it kind of shows monotropism is on a scale to begin with, but it also shows have we got our labels right? So maybe we should just be looking at how monotropic our students are. And the monotropism questionnaire is still freely available online a really nice thing for families to do. And you know if you're, if you landed in life and doing what you want to do your own way. You might find you're highly monotropicropic. But you don't need to go and get an autism assessment or an adhd assessment at all. But if you're really struggling with life, it might show you why fascinating.
Speaker 1:That's really interesting and I know I've heard you talk about monotropism and how for you you feel it kind of really captures and explains autistic experience and what is it about it that really kind of resonates for you.
Speaker 2:I suppose a lot of things, but one of the things that I think is most important, especially nowadays where people are talking about people getting labeled as autistic, is monotropism covers all autistic people as far as I can see. So, for example, I'm, but I only found out in my late 40s. And my brother is autistic and my actually my paperwork is more clear than his because he was assumed to be autistic from age three. He's going to be coming up to 60 now and this next week Happy birthday to my brother, john, and he would have huge or profound needs, support needs and profound intellectual disability or moderate intellectual disability, I guess, but because he's never been to school, he got expelled after a week. He would have enormous support needs.
Speaker 2:So when I found out, I was autistic and like I've got degrees and I've been working and luckily this is a podcast and not a video, so you won't see the state of my house, all right, but we're very different in terms of what we've been able to achieve in life and in terms of our support needs and monotropism the fact that what we pay attention to is what we pay attention to. That is what links the two of us. So my interests they might change over time. Autism, understanding, autism, understanding psychology, mushrooms, nature they're prevailing ones. Mine swap around a little bit music, choirs, whatever it might be. But my brother's interests John, because he has, as I say, quite deep learning difficulties, but his are around where's the next cup of tea? His interests are around shiny things. His interests are around drives in the car, and so knowing those kinds of things are really important because I know, as another autistic person, the value of those things to him and also that he understands the world through those things so that when he knows those things are coming, it will make him feel a lot safer.
Speaker 2:And so again there's, I suppose, out in the warring worlds of social media. There are so many people who say that people who are late identified, autistic people, perhaps don't understand the experience of people who've got profound disabling needs, and that is absolutely true. But when we do link in and Dinah, who again, and Wen, who are involved in monotropism from the start, and myself, through Family Connections and through work we have always been with autistic people of all levels of support need and all levels of intellect, and so we can see the commonality across that and because we're privileged to have a voice and privileged to think a bit and we can maybe try to explain those things and say Dinah and Wen have done wonderful jobs of that and in my teaching I try and match what they have done to support my students.
Speaker 1:So you mentioned sort of you know your brother got. His autistic experience was identified when he was very young. Years was identified when he got a bit older. And how might an educator in the classroom kind of recognize what monotropic processing looks like in a student that they're working with?
Speaker 2:Yeah. So again, obviously we're not only monotropic robots. We also have life experience and the teacher of last year and our preschool experience and our primary school experience and our secondary school experience and we have our personalities and we also have the sensory experience that might be different in autism, again coming from being monotropic. So I know Dinah and Gwen and Mike had written their original paper on monotropism, taking what was supposed to be wrong with you as an autistic person and explaining it in terms of monotropism.
Speaker 2:Fergus Fergus Murray, dinah's son, more recently told well, what do autistic people think autism is and explain that in terms of monotropism. So the teacher might notice some of what Fergus had defined. They might notice sensory differences or they might not. And that's where really good homeschool communication is important, because a little child who goes into preschool age three or three or four, even age two now and they're taught to sit and to do what everybody else is doing, they may not know. Well, they don't know that everybody else in the class isn't tortured by the lights or the sounds or the smells or the movement, so they don't know. So they go carrying all this load all their lives and like for me, it was only in my 40s I really dismantled my sensory needs, um. So sensory needs may be a thing, but the teachers may or may not notice them. So that's where there's good homeschool communication and good observation needed. Um, and actually to throw in a plug there for autism level up, they've got a lovely sensory regulator that's free online where you can check out sensory needs.
Speaker 2:And then social differences for autistic people. We don't tend to see um hierarchy as much as other people, so the child might treat the teacher the same as the other classmates, or the child might think that they are the teacher, so the teacher might notice that. Or at the break time, when all the other kids are having a break and going off to have fun, the autistic child may be completely lost because socially they're not quite sure what to do with all these people, with moving arms and legs and changing topics and changing games. So there may be social differences. And then focus. If we go back, I suppose focus is often what we think mainly about in terms of monotropism. That, um, our autistic children will have their focused interest or tend to have. Now, some children flit and float it's the quality of the attention, but some children have found things that they focus on all the time that they absolutely love, and so they may want to gravitate towards those all the time. They may want to play with those all the time and I might come back to that in a little bit talking about teaching, because that can be really useful to know about that happening. It can also be that the child.
Speaker 2:The fourth thing that Fergus identified is what autistic people talk about all the time and because of it itself we haven't done enough research in it which is autistic inertia, and some of the main people I know who are studying inertia haven't got their work finished because of inertia. Inertia haven't got their work finished because of inertia. So in school people might call that transition distress and having difficulty with change because we're so focused on whatever it is we're doing, whether we love it or not, but we're focused on it. To move from one thing to another can be very difficult and that's where, using visuals and explanations we'll get into that can be really helpful as well. So those are all things you can notice, but you might also notice that the child might be extra exhausted compared to everybody else as the year goes on, so Monday mornings are coming up to Fridays or as the term goes on. Just because the child is putting so many resources into paying attention to whatever it is they're supposed to be paying attention into school, which may not make any sense to them, and having to interact and do all these different things, it can be just schools are not designed with autistic neurologies in mind, and so it can be just schools are not designed with autistic neurologies in mind, and so it can be just difficult being there. And so teachers might just notice that in their students and they may also notice in the very nice side because this is all quite negative that the the joy the child takes when they are in flow and the joy the child takes when they can talk about their interest, and just in that. I suppose in primary school you a lot of children tend to be interested in more or less similar things. The autistic child might go more into tech things or colors or whatever. At second level the children are older and the very bright ones might at that point be quite specialist. And, as teachers, when you're a student knows more than you, that can be a little bit undermining. But as teachers, what we do know how to do is to support children, to share their knowledge, to share their knowledge, to develop their knowledge, and so that's where we can not be so undermined and use our skills to help our student.
Speaker 2:I'm just thinking of diana again here. Um, one of dina's last. Well, we met. After that dina passed away and I am during covid, but she had rung me to tell me of her illness. But in the middle in, in the middle of it all, she was wrapped about this book called entangled life by merlin, merlin sheldrake, all about mushrooms, and she opened it just randomly, and the page she opened it on, just randomly, had a picture of a organism called monotropa uniflora. Oh, my goodness. And so monotropa uniflora I'm going completely off the point here, but isn't that what all the hd people do? But um, it's about monotropa uniflora. I'm going completely off the point here, but isn't that what all the hd people do? But um, it's about monotropism. So she just opened that by chance. And monotropa uniflora. For a long time people didn't know was it a plant or a fungus, and it's actually in between the two. But it's classified, I think, as a plant. But it doesn't photosynthesize, it takes its energy from other things, so it's a bit of a planto diverse plant.
Speaker 2:And on it she wrote in this was when she was very, very ill and just with limited, limitless, boundless love and appreciation, dinah. So that's one of my treasured possessions of Dinah. But anyway, her love at that time was mushrooms, as was mine, and indeed I worked with a student after that and he loved the outdoors, but he loved creepy crawlies and he also had both the agility and the eyesight to spot them and to catch them. I don't love creepy crawlies that much, but I do love plants. But we were able to combine interests over mushrooms, because mushrooms are often full of creepy crawlies, and so he then became an expert in mushrooms along with myself. You know, actually he got much more of an expert than myself.
Speaker 1:I was learning, he was expanding it, and so teaching to his interest made such a difference yeah, that makes a lot of sense, and every time I'm out and about, I'm shaking at the minute because I feel like we're we're in that sort of humid weather where there's a lot of mushrooms suddenly sprouting and every time I see one, I want to take a photo and send it to you and ask you about it, don't hold back. Historically, then, how have educators thought of and kind of worked with students who were monotropic processors?
Speaker 2:Yeah, I suppose our education system is set up in a certain way and it is not set up for monotropic processors. And so when first I suppose autism was one of the last big labels to be identified you know, it wasn't even there when we had schools for children who were hearing or vision impairment, we had schools for people with physical impairment, we had schools then for people with intellectual disability Took a long time before autism even fitted in, and so well-meaning teachers thought, well, how do we support our children to fit into our education system? And so the idea that the children were actually thinking differently. The assumption was that if we teach the children how our education system is and what they're supposed to do in it, they will do it. And some did I did. And what they're supposed to do in it, they will do it. And some did I did, but it was exhausting and it was not in line with how I learned at all. And I have a fascination at the moment with the whole topic of decolonization. And the reason our education system is as it is is since Victorian times, when lots of people were streamed through to have the basic literacy, to be able to work in the factories, and over the years we've just added in more and more and more stuff Like.
Speaker 2:As a teacher, I was horrified when this new subject called CSPE came in and we had a staff meeting about whether it should take some of the science time. I was thinking, science time, no way. And of course every other teacher was fighting for their subject. And in the meantime SPHE has come in as well. All these new subjects have, and of course our specialists are not designed to learn in that way. So our education system is not set up for our autistic people and if we look at a human rights perspective, we are sending our autistic children into a place that it's not the easiest for them to learn, either sensorily or in terms of topic choice. Some do survive and some do manage, but it's not the ideal place for those children. I mean, people might argue it's not the ideal place for lots of children, and I am so impressed by the teachers who put their time into supporting all the children in their class, knowing that the situation isn't set up for all those children in their class.
Speaker 2:And then, I suppose, because monotropism was associated with interests also called in the manuals restrictive, repetitive behaviours, they were pathologised, so they were considered to be maybe obsessions restricted and people were trying. They weren't considered as being original things, the child wasn't considered as being motivated or somebody with deep focus. So again, the teacher's idea was you know, we need to take them away from this and introduce them to the curriculum. Then maybe they make friends with all the other children in their way, whereas we know now that if an autistic child has a particular interest, putting them with other people who've got that same interest, of whatever age, is how you support socialization and just autistic joy. And to make things worse, I suppose again I was teaching and then um asino, at the time when ABA was coming wholesale to the Irish education system. So ABA is applied behavioral analysis where it is sort of the assumption is that if we teach children how, coming wholesale through the Irish education system, so ABA is Applied. Behavioural Analysis where it is sort of the assumption is that if we teach children how to behave like everybody else, they'll do it, and so a lot of ABA was about finding out what the child loves and in that time, therefore, they did the thing and then they got the thing they loved. So if we look at monotropic interests as being, our child is paying attention to them and we're not paying attention to all the other stuff.
Speaker 2:I'm originally a second level teacher and so I was science and maths Science. You kind of back then assumed the child had no knowledge at all and you start from scratch and do it out. But in maths there was a curriculum that the children followed and so coming into first year you'd assume what they knew, even though you'd be kind of repeating it again in first year. But not for the autistic children. Some would have managed the curriculum, some would have gone far beyond the curriculum, but some would be completely looking at the world in a different way. I taught a young man who's now in the second year of his PhD, who when I met him in sixth year, didn't know how to subtract because he'd worked it out his own way. Um, and I think he knows how to subtract now, but I'm not sure how great he's at maths. But he's doing a phd in other things. So, um, he's a specialist in his own way.
Speaker 2:So the interests were instead of being treated as the building blocks, because when you know the child's interest, you can then build from that and expand and as a good and original teacher you can use that to support the child into some aspects of the full curriculum, or at least some aspects of what they need to survive in life, but instead in ABA they were used excuse me, as bargaining chips, and so you do the horrible thing, you get the nice thing. So the child was rushing through the horrible thing, maybe taking it in, maybe not, to get to the thing they loved, and it may even have destroyed the love and the thing they loved because it suddenly became the thing they had to work for. So monotropism wasn't historically viewed well in certainly my time as a teacher. However, roll back a bit further and to the time, let's say, of the book neurotribes being written, which is, um, god is 15 years old now. In the early chapters of that um, scientists like cavendish are described um.
Speaker 2:Back when autism was taught to be a bad thing. The idea that you would label somebody as autistic when they weren't around to defend themselves was horrible. But autism is simply a type of brain that can be incredibly disabling or incredibly empowering, depending on where you land, usually a mixture of the two things. But Cavendish, just by his lifestyle, seemed to be very, very autistic. Just by his lifestyle, seemed to be very, very autistic, and so he was rich enough and able enough to be able to focus on his individual interests and to bring science forward. And one wonders about a lot of people who were able to have their tutors and their governesses and who were able to learn the way they wanted to learn. That that would really suit autistic learners. But our school system obviously isn't set up that way and there's a certain cost involved in it.
Speaker 2:I don't know why I'm thinking right now of Peter Benny. Peter Benny is an autistic man. I know, and everybody will know, stephen Hawking's and Stephen Hawking's voice. And so Stephen Hawking, this Oxford professor, had an American accent and that's because he got voice technology before anybody else did or before most other people did. And so he got that early version of voice technology and technology moved on and people said to him you know, would you not prefer to have a voice that more matches where you're from? And he said well, no, this is my voice now. But the technology changed and people didn't know how to manage that technology, except for Peter Benny Well, I'm sure a few others as well who loved that particular programming, and he was keeping Stephen Hawking's voice going up until the end.
Speaker 2:So that specialist knowledge. It certainly wasn't viewed kindly before, but Peter, who would probably be my age, did that and happened to do that. So he was a specialist in a very niche area. And so how do we support our niche learners in the middle of a system that looks after polytropic, the opposite to monotropic learners, or does it look after them all? But that's all part of decolonization, addressing what we've taken on culturally and saying does this work? And, it's very clear, the reasons why it might not work.
Speaker 2:For autistic people Again, back when I was a CINO we were setting up autism classes and so when you set up an autism class you're supposed to have six students in each class and a certain amount of staffing is allocated to that. And lots of secondary schools were having a class that was kind of a drop in and drop out, or they were even asking to create nurture rooms and that makes complete sense that people would go where they need to go, when they need to go, and then not be there when they don't need to be there. But our system again is caught up in this old mindset. This class is for these people and that would be a really easy one to change because those classes are so quite new, but we're caught up in that. That's what I call a colonial mindset. This is how it was done, this is how it will ever be done, and you're supposed to make it work yeah, that's it, and I find that sort of decolonizing approach to everything, to be honest, really, really fascinating and really useful.
Speaker 1:It's just sort of it gives you a chance to take that step back, doesn't it? And to be able to kind of go why am I doing this? Is it because it has always been done this way, based on those ideas that have been set up by whomever was in power? Um, and am I just following that line? So it's a chance to kind of challenge those assumptions and and maybe think about doing things in a different way, isn't it?
Speaker 2:it's so useful, I think yeah, because it's looking at whose needs are being met and then why. And autistic people, by our being, by our being in a world that really isn't set up for us, tend to cause that to happen a lot educationally, socially and employment in all kinds of places. So we tend to make people uncomfortable, like it or not, but we also open the pathway to new things yeah, that is then useful for everyone exactly, exactly and again. What's often necessary for autistic people can be nice for most other people.
Speaker 1:Yeah, absolutely, and then this almost seems like kind of a trite question, but I do kind of feel like it's an important one to ask what are then the positives of monotropic processing? I think a lot of them are very obvious.
Speaker 2:Yeah, I mean, there are so many of them, yes, but that joy of deep focus, of being engrossed in your interests and I'm sure anybody anywhere has seen autistic joy the child jumping up and down, or even you might see adults not trying not to jump up and down. It's great when you're the parent or you're with an autistic child because you can kind of release what's in you anyway. But so autistic children haven't always learned to mask yet, and masking is another story. But, um, and it's just also the positive, it can be used as a distraction. If I'm in an airport or on a train, I will put on my headphones and listen to a nice podcast, or maybe I'll go into my duolingo, or maybe I will, um, play pokemon go and, but I will do things to distract myself and I will get so lost in that it means I will be able to forget about what's going on around me. That's really uncomfortable. Also, it can help to calm a person when you're distressed. But again, in school, to be careful of that, because if the interest is always used when you're distressed, well, then you'll associate it with that. But certainly getting to your interest can be a really nice thing when you are distressed. So that's also very helpful. And the other thing is to use it as a learning strength. So, um, a clever teacher will be able to draw that into whatever the subject they want to teach. So that certainly it links into that concept base of the autistic child the awesome thing, child, because we're talking about education, adults are exactly the same, and I'm thinking of one adult, um, amanda bags. Um, who's passed away sadly.
Speaker 2:Um has a lovely video on YouTube called In my Language. It's about eight minutes long and I watch it every now and again to focus myself. And in In my Language, amanda just engages with the elements of her apartment. They aren't all natural, some of them are. Well, there's water through taps, there's the tap itself, because, again, my brother takes such joy in shiny things, water through taps as the tap itself, because, again, my brother takes such joy in shiny things, um, and it's just, it's an appreciation that sometimes, in the rush of life, in the rush of doing, we don't I certainly don't do that, and so my brother grounds me to do that.
Speaker 2:But in, amanda bags, in that video, reminds us of just grounding and says you know, yet we're the wrong people, the people who are noticing all those things. And her language is not the language of words. It's the language of sensory engagement with what goes on around her, and indeed the original paper on monotropism would have talked about that as well, because Dinah was a linguist, she wasn't a person studying autism, and so we talk about really that autistic people often experience the world sensorially primarily other than language based, and it can be wonderful when you about really that autistic people often experience the world sensorily primarily other than language-based, and it can be wonderful when you can let yourself go and do that. So I sometimes also take photos.
Speaker 2:I was lying in a field of bluebells in May just taking in the smell until somebody took a photo, and when I see that photo, I just get the smell of bluebells in my nostrils again and it's automatically calming, calming. So there's lots to be positive about it and just to be aware that when somebody doesn't take joy in what they did take joy in before, that can be almost a serious indication of a stress crisis and something to really take seriously in school or for parents as well. If they've lost joy in something, they might just have moved on to something else. They've grown up. That was yesterday. They were six, they did that. They're seven, they did that, but it could also be a sign of being very distressed, so it's important to know about that yeah, absolutely.
Speaker 1:I don't know if you find this, but for myself anyway, like I, I have sort of enduring interests. Everyone knows I love dogs. I talk about dogs all the time and have done for as long as I could talk um, but then I will have sort of interests, that sort of wax and wane, and there'll be different interests that come and go and you can almost feel when an interest is about to leave and there's almost kind of a grief that happens when you you know that it's just it's going to be out of reach soon and you're not going to have something that you can dive into. That's been so helpful, do you? Do you feel that?
Speaker 2:absolutely it's like the sadness as well when you're coming to the end of it. Sometimes it comes back again, but sometimes it doesn't, and so there isn't always that element of choice in it. And indeed in autistic social circles you see people asking sometimes you know I'm running out of interest, can you give me something else to get interested in which also goes back to school? Because sometimes our kids, because of sensory or social challenges, don't get as much experience of the outside world as others so don't get to know what's going on, sometimes as much as others.
Speaker 2:So having, um, I know in autistic circles again, we enjoy lightning talks, whichever somebody talks for maybe three to five minutes about a topic that interests them and everybody else has a couple of interests, a couple of minutes to ask questions, and it can be a lovely thing to have in schools, maybe a friday afternoon or a wet day like today, just so that the child knows there are other things out, there are other things to ask about. It can expand interest a little bit as well. But absolutely having something to really focus on can just bring such joy. And when it is gone or coming to an end or not bringing such joy anymore, there is that, that emptiness, that withdrawal, that sadness, that grief yeah, yeah.
Speaker 1:but I suppose on the flip side of that for me, when I kind of start to feel an interest building and I've learned a bit about something, and then I've gone back to it a couple of times and learned a little bit more and I'm like, oh, is something happening here? Yes, there'll be a new interest. That's such a gorgeous feeling too.
Speaker 2:It is lovely, it is. One of my interests this year has been the Irish language and I'm learning lots of it. But I began watching the Irish language program soap Ross Neroon, and again, I'm not familiar with it and I wasn't talking to other people about it because nobody else I know was interested in it. And there was, of course, a big cliffhanger a couple of weeks ago and I didn't know that was the end of it for the season, so I was lost. So I've gone back to YouTube to find the very first episodes of Ross Neroon to keep myself going, so it's a sort of a way of letting go of it slowly, because it's a bit hard to find it all on YouTube.
Speaker 1:Yes, you mentioned that feeling of sort of your own interests and how that impacts you now, did you? How do you feel like monotropic processing impacted you when you were younger and maybe in sort of education settings?
Speaker 2:yeah, I had a funny childhood. I suppose I was so sensorily overloaded by school, um, but also because my brother would have had big learning needs and wasn't in school at all, I felt the weight of family responsibility to perform well, and so I think I can say I spent most of my childhood and my early adulthood in a state of monotropic split, and monotropic split is only being looked at, it's only been described by Tanya Adkin in the last year or two, and so monotropic split is when there are so many demands you just can't. You just can't get into that flow state, and so I was quite unhappy a lot of the time in school just trying desperately to keep my head above water and to do everything. Now I did really enjoy maths, um, but my maths homework would take an hour and then if I was doing that it means I wouldn't get the other things done, so I could never just fully just get into it um. So it was quite a difficult um educational time and in later years of secondary it took that long and I began to play guitar and um discovered music at school, and so that was a lot of fun and made things to do in our lunchtime, because, again, I didn't know. I also, by the way, wanted to be the coolest kid on the block, um, which was utterly impossible. I was never going to be not even slightly cool. So even the people who wanted to be friends with me, they were the other kind of misfits and I didn't really want to be friends with them. But we did have music together and so it was religious music. I was very religious at the time and so we sang at all the church do's and Christaburg made his way in again. That's how I am, and so that was that made things easier in fifth year and sixth year of school. Even through college.
Speaker 2:Then I was struggling, struggling, struggling again just to keep on top of things, and so it's only, I suppose, when I began working and used to work and got independence and perhaps as a teacher I was mainstream teaching for many years and it was really only in the school holidays I could just drop into being me and gardening and going and playing music in sessions and pubs and people saying, god, joan, you know you're actually great crack, because they didn't know that before and me intending that I definitely would keep going to things in September and lasting into the year.
Speaker 2:It was just not being able to because I was just so exhausted keeping up with everything. That's where autism is disabling for people like me that I just don't go places, can't go places and miss out on hearing about things then as well because of it. So you've asked about monotropic processing in my childhood. It really only happened in adult life when I thought I don't have to be chasing and doing all the time. I actually can chill and relax and enjoy this. And I even write into my again. I have to bullet journal to remind myself of things and I write in every day what is the thing I'm doing to bring me joy every day, because it's just not something I grew up with and I'm still having to remind myself to do that and doing that daily, most days.
Speaker 1:I think that's really common though, isn't it, I think?
Speaker 2:because, particularly if you're late identified, you spend so much time kind of fighting against your, your natural instincts, that you don't learn what your instincts are until much, much later yeah, I mean it was a year or two after discovering I was autistic, really unraveling that um and covet came not too long well, it's a couple years after that again, but certainly during covet in terms of masking, I decided I did enough of that. I've been on my own now for a year or so.
Speaker 1:I'm going to come out as me and um, which has made a big difference as well um and then from an educator perspective, are there kind of practical things that educators can do to support that monotropic processing um?
Speaker 2:There are huge things and it's kind of counterintuitive in some ways, but nicely, there is some research there now that backs it up. And so Rebecca Wood did some lovely research on. It wasn't on monotropism, it was just on teaching and learning for autistic children. But she found where the teachers worked with and the SNAs and teaching assistants worked with, the monotropic interest. You might think that that's denying the child access to the curriculum. But actually the child, you know, their trauma system was relaxed a bit more. They were talking about what they enjoyed in school. So there was far less keeping on task because the child was on task automatically. There was far more engagement, mostly verbal, but again, for even for students who don't actually use their voices to speak, there was shared, there was pointing, so because the child was using or was working on what they wanted to work on, what they understood, and so there was also better engagement with other academic work because school finally made meaning. But Rebecca Wood found it a huge, as she called it, educational and effective benefits. So supporting the students, along with their interests, makes such a difference.
Speaker 2:Now parents had some concerns there. They were thinking well, the child isn't getting access to a broad and balanced curriculum Colonialism again. We are not people who work to broaden, balanced curricula. We should be exposed to it because it's our right to have a broad education. But if it really is not where our thinking is, why are we forcing children through that who will learn very well in other ways? It's just, I mean, it's a systemic issue but teachers can do a little bit about it to make it a bit easier. So finding out the child's interest is really important.
Speaker 2:I work now with students who are out of school and when parents or teachers ring me and they have a long story of school. And when parents or teachers ring me and they've the long story of distress and of services not there and all those things and I'm asking well, what is the child's interest? And people sort of wonder why I asked that. But I asked that because that's my way in. So my first time working with a child who was a non-speaking child, she was using the lamp on her device and I wasn't quite sure of what all her things meant because she was just learning her phrases now. And then mum said you need to learn a bit about Paw Patrol. So I had to go and do a crash course in the phrases of Paw Patrol. All I remember now is no job too big, no pup too small, but because that was her language was coming out for the first time and it was coming out in this device and I needed to know that.
Speaker 2:And so, um, we haven't mentioned gestalt yet, but we're learning now that a lot of autistic people learn to speak, and again, a bit like monotropism it's.
Speaker 2:You know, people can be more or less monotropic, people can be more or less gestalt learners, but it looks like most, perhaps all, autistic people learn via gestalt, which means we learn to speak in the first place via phrases, not by mama, dada, mama go, dada, go, but maybe by to infinity and beyond, and we don't deconstruct that into its meaning until much later on.
Speaker 2:But those gestalts, where do they come from? Our monotropic processing, the things that we notice, and so, as good teachers, we can find out well, what does that phrase mean for the child and use it with that meaning with them and then broaden it, change the phrase slightly for something that you both have a shared understanding of what's going on and that can expand the child's language learning, so knowing their gestalt and then knowing how to expand those and there's lots of places you can learn about that a little bit as well in primary schools, you know, having on your handouts or in your books just putting in a little bit about what the child is interested in. Or if you're doing your, as people often do in teach type setups, if you're doing your three tasks, having the pictures of what the child loves, be it the color red or be it trucks, or be it Elsa and whatever from. No, that's that Disney program.
Speaker 2:So I didn't have a child who did that, but using those on the baskets. So the thing kind of makes sense to the child. Now, second level you might think it's a bit harder because you might have a child who loves French and you're the science teacher. But that's where good additional resource teaching can come in. If the resource teacher knows a bit about the interest and can pass little notes to the teacher's neat subject, just where they creatively think of just one place where you can just draw it in, then it suddenly might help the thing to make sense to the child or even just make the child like the teacher a little bit, because the teacher has that same interest. Like I've never known anything, not only about Elsa and Anna, but also I haven't known anything about GAA, but I might just learn a phrase about a match just to that's for any student in general. But for our autistic students to know exactly what it is that they like Now also practically speaking.
Speaker 2:Going back to the difficulties autistic people identify about being autistic, check out for sensory differences. So is the child sitting near a window? Is that lovely in the summer and awful in the winter, or is it same all year round? How are they noise-wise? Do they need to wear their headphones. And then that transition difficulty. That's where, even for the most obviously able child, having lists, letting people know what's going to happen next, not making assumptions just because every week at friday things are a bit different when you go swimming, to say that in the morning and to remind the child of that, and then, when the swimming sessions are over, to say we're back to what we used to do before this week, and what we used to do before was this. So to let the child know what's going on.
Speaker 1:Because, again, monotropic thinking, moving from place to place, from thought to thought, transitioning attention can be very, very difficult and you you've mentioned a few times the, the brilliant diana murray, who is one of the people who has sort of brought the, the idea of monotropism, to us all, and I know you were good friends. So what was diana like?
Speaker 2:oh she was. You kind of think more about her after she's gone and about all the little aspects to her. But um, she was my second marker when I did my master's in autism in Birmingham. Um, and I was only realizing at that stage I probably was autistic myself. And um, then when I found out I was autistic, the first thing I did was seek out community in the UK because I'd seen Dinah and other people in Birmingham and I hadn't been part of that community because I was not part of this exclusive autistic group. But I met her then at an autistic pride picnic in Hyde Park that Guy organized and she had just had an operation and she just had some sad news. And I looked her and introduced myself and said, would she like a hug? Because she looked a bit sad and we had a hug. And then I was going to an autistic conference that summer and she said, oh, come and stay, and that's the kind of person she was.
Speaker 2:And when I went to stay in Dinah's house it was like what I imagine the salons would have been in that time of um, france or England, because all kinds of people were wandering in Damien double empathy, milton was wandering in Larry Wood when Larry Arnold, when the conference would be on, larry Arnold was one of the first people to speak about autism and he had I'm sure the archives are online as well autonomy. He wrote about autism lots. Then um Panda, who's an IT genius, would come in as well. Heta, who set up the European Council of Autistic People, and it was between them. I was inspired to set up the Autistic Paddies, which was to be an autistic organization, to join the European organization, but I don't have that skill set to actually pull all that together, so we just became a big social group for a long time. So, and but that's all sort of the people who would be out and doing, but Dinah, as I say, autistic people don't tend to see hierarchy.
Speaker 2:Dinah would have had equally good friends who would be referenced in her papers, who would have been in care, who would have had learning difficulties. So um, ferenc Virac, and he would have been, as she says, the first person who identified her as autistic. Um, because she said something to him, about him, to him once, about you know, you being like this, and he looked at her and she knew he meant that she was also like that. He didn't use words much either. Um, and she was very active in autistic people against neuroleptic abuse and she went into that from care work and she discovered that a lot of autistic people, from being completely stressed socially and sensorially, were given medication.
Speaker 2:And she would have met some lovely people there who I would have become friends with and she was friends with who are not known in academic circles but who do so much around supporting autistic people. And she came to visit me once as well and brought a little bag like a big, a big school backpack, but in it she had her aeropress, because coffee was very important to her and I remember the first cup of aeropress coffee she made for me, that she made properly. Somebody else just called to the door and so I felt obliged to give it to them and of course you know, monotropically she had made that for me. It was her heart and soul was in a cup of coffee and I gave it to somebody else and she was a little annoyed about that, which was kind of funny. So we were discussing our monotropism at that point as well.
Speaker 2:Um, so, yeah, it was just, she was a, a very good egg, but, um, she knew, when she knew she was dying, she moved to um scotland after brexit am I saying political things here? And she was living in a kind of a courtyard and shortly after moving, covid lockdown started but yet she got to know everybody in her courtyard. So when she was dying and everybody was visiting her, neighbors were looking after her dog, neighbors were putting up people who were looking after her like totally the antithesis of autistic socialization, because, um, it was like coming to pay respects to the queen and no, a super, super person. And we talked a bit about afterlife and she believed. She didn't believe there was an afterlife, but she did believe that the good that she had done or the thought she had put out would spread and grow. And that is absolutely certainly happening.
Speaker 1:Yeah, that's definitely. Yeah, quite, quite the legacy that she's created. Yeah, absolutely, um, and anyone that I've ever spoken to about dinah, they only have the warmest things to say about her. You know the way, the way people's faces light up when they talk about her. I think is so very telling and, to be honest, joan, I think people would be the same talking about you and I think the way that you've built community is very similar to how Dinah has built community, and so I just wanted to say that and have it on record.
Speaker 2:I appreciate you saying that, but no, dinah was exceptional, but yeah you both are.
Speaker 1:And then my very last question for you is um, is there advice that you give to your younger self?
Speaker 2:if you could, I think, to find your passions and to follow your passions, no matter what they are. Um, it's funny because back in leaving search year in, it was about four sessions ago, and I was thinking psychology sounded interesting, not knowing anything about autism at that stage, and was advised no, there was no careers in psychology, so I went into biochemistry instead. And also to accept yourself and accept everyone else, because I was always trying to be what I wasn't. So not only was I masking who I was, but I didn't like who I was and was trying to be the cool person and it meant that other people who weren't cool I didn't appreciate them either. And I can see that happening to other autistic teenagers now who aren't loving themselves. And I just think so important to find out who you are.
Speaker 2:And I'm going to put in a little plug now for leans in school, which is for 8 to 11 year olds, and just leans is all about learning about neurodiversity. At school I was part of putting together the materials for that and it's about really appreciating everybody with all our needs and with all our talents, because then things can become less disabling, like a disability arises from what's different in the individual and then the environment in which they find themselves. And we can do so much more to improve our environments. So um advice to give the younger self do leans. Second level join a um group for neurodivergent people, just to see what and who you find there brilliant.
Speaker 1:Yeah, I think that finding, finding your tribe makes such a massive difference, and then, I think it's a really helpful way to to allow you to accept yourself, isn't it?
Speaker 2:you know if you, if you can sort of recognize yourself and other people and, and you know, go, yeah even knowing that you're not the only one and knowing that other people feel things the same way, or even when you're so heavily masked when somebody else describes something or does something and thinking that is me, that's a hidden bit of me I didn't know about thanks so much for listening to the podcast.
Speaker 1:This is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. The views expressed in these chats may not always be the view of middletown center. If you'd like to know more about middletown, you can find us on x at autism center and facebook and instagram at middletown center for autism. Go easy until next time.