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
Nessa Hill - Neurodiversity Ireland
In the latest Middletown Podcast, we chat with Nessa Hill from Neurodiversity Ireland. We talk about the importance of practical autism-affirming supports and the positive impact that a neurodiversity-informed approach can have for everyone. Nessa chats about how seeing neurodiversity as a social justice movement informs her work.
Find out more about Neurodiversity Ireland: https://neurodiversityireland.com/
Welcome to the Middletown Podcast. I'm Cat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode I chat to Nessa Hill from Neurodiversity Ireland. Neurodiversity Ireland are a progressive charity providing support for neurodivergent children and their families. Nessa is director of the charity. She's a barrister and she's also multiply neurodivergent. She's an extraordinary advocate for the community and through Neurodiversity Island, she's creating real, practical and positive change. We chatted about neurodiversity and how taking an affirming approach to neurodivergent experience makes such a difference to supports, education and every neurodivergent person. I could have chatted to Nessa for hours. She's so interesting. I hope you enjoy our chat, nessa. Thank you so much for joining us on the podcast. I'm delighted to chat to you. I suppose I wanted to start by asking where did the idea of Neurodiversity Ireland come from?
Speaker 2:Yeah, thank you very much for having me as well too. I'm really happy to be on speaking for Neurodiversity Ireland. The idea came from, first of all, a group of us parents who kind of realised we were all in the same boat in that our children were. I suppose we all kind of find each other because our children were not getting into the local schools that we would have liked them to get into, because their children were not getting into the local schools that we would have liked them to get into, and kind of other types of difficulties as well too. Like you know, we find that there weren't very many, you know, social outlets willing to take them on or able to take them on. And then, I suppose, things that we were experiencing at home as well too that were difficult and we were able to talk to each other about. You know what things we were finding hard and if we had advice for each other. And I suppose I was coming a little bit after my friends who were giving me a bit of advice, because there literally was nowhere to go. We had nowhere to find out any information. You know, I remember my friend emailed me a page that somebody else had written for her, um. So like it was that level of you know, what do we do? You know when you're in this situation where your kid is doing x, y or z? Um. So we kind of like, over a few fair few evenings together, realized we we had to change that situation where people were still you know being, you know their kids are being identified as autistic or adhd every day and and like into a black pit you jump. So we thought like we cannot keep letting this happen and also the only reason why our kids were being excluded from the schools that they that we wanted them to go to was probably, you know, lack of understanding and fear that you know they weren we wanted them to go to, was probably, you know, lack of understanding and fear that you know they weren't going to be able to look after our children when they really could. Um. So we wanted to really approach the schools of positivity and show that like being neurodivergent is not a big scary thing that you know is impossible to look after. And I suppose a lot of the publicity and campaigning and stuff is quite, has been quite negative and and can create this kind of unknown fear of the unknown as well too. Um, like I didn't even know what. What does all doesn't mean at that stage, like what, I couldn't explain it to anybody if they'd asked me at the time.
Speaker 2:So we gathered together our local community um and had like a community launch in 2022 and like a couple of hundred people came to it. The response was overwhelming. People just really wanted to learn, um how to do better. And then, after that, the then the kind of requests flooded in to you know, to us. We went round all our local businesses just asking them to kind of support us, not financially, but with their attitudes and their accommodations and what they could do to make life a little bit easier. For you know, for example, if you went to the restaurant, instead of everyone staring at us, of your kids, you know um flapping their hands and walking up and down the restaurant, you know they could say, well, our toy box is in that section, that's quite, you know, quiet. And if you'd like to go there, you're more than welcome and you feel so welcomed by that. Or in Tesco, if you have um our lanyard, or not even that, you know they'll say, like I know, this is really hard, you want to skip the queue and you want to come up and go to the top of the queue and like all these tiny things that just make life so much easier and feel so much more welcomed in your local community, and some bigger things as well too, like we got um, uh, the local council to paint um parking signs, uh, in the local village, because it can be so hard to, you know, get to the shops, never mind then get into the shops. So that was really really helpful. And then from that kind of community group, we just were overwhelmed with the response from all across the country, from schools, from professionals, from parents that we just thought, right, look, we're going to have to do this properly.
Speaker 2:So we set up Neurodiversity Ireland then, and I suppose we have three kind of areas of work, if you can call it that. The first is our really hands on occupational therapy led support groups that we have in blackrock and we created this pilot, I suppose, sensory center where our children were not getting any support whatsoever from the cdnts, who were completely overwhelmed. The waiting lists are six years long and when you do get in there are not enough occupational therapists or psychologists or speech and language therapists to actually give any, you know, worthwhile assistance. So we wanted to create the supports that we knew we wanted and needed and they're different to the traditional models that are out there. So we have 200 children a week who attend our OT guided play groups. So we have 200 children a week who attend our OT guided play groups and you know they don't know that their occupational therapists or additional needs assistance or communication specialists or speech and language therapists that are helping them. They're just having fun connecting with, making friends, gaining confidence, kind of learning new things that they wouldn't have had the opportunity to do.
Speaker 2:We've created a network of families there, but also we have a support network where we have about a thousand families who are all connected to each other, who share advice, who ask questions you can give. You know somebody has gone through something that you're doing before so they can immediately help you. You know whether it's sleeping problems or not eating, or you know do you need melatonin, what type of adhd medication, all of the things that come with. You know having um an identification or diagnosis of um neurodivergence, um as a child, that there just isn't um support with out there at the moment.
Speaker 2:Um second part is then um we work with schools and support them with giving them the most up to date information on neurodiversity and neuroaffirmative values, I suppose, which in like in plain English, just means valuing all different types of being as being really valid and valuable and positive, and not them and us, because all the time it's been. You know, special classes and special skills and special needs, and we just want to say you know, recognize that there are enormous challenges that come with being neurodivergent at times, um, but that all of us have the power to support that. I mean all of us in our community and our community of school, um, but people need help and need the resources and need the up-to-date information and to be empowered to do that. So our team of OTs and communication specialists and psychologists go into schools, give the advice. You know we'll do an environmental audit there and then give recommendations on small changes you can make that are really powerful. Like you know, if you don't clap in assembly, if everyone does the kind of jazz hands for clapping, it's really helpful for those who have very sensitive um hearing, um, but it doesn't hurt anybody else, you know. Or if you put a rug underneath um the wooden blocks area of the classroom, that's really helpful for those who are, um again, really sensitive, but doesn't hurt anybody else. So if you think about changing all the things that help and don't hurt anybody, then you know that's um one aspect of work and on with, feedback from that has been phenomenal, like our um. We haven't advertised our schools project but we're out the door. Our waiting list is out the door, um, and the teachers are, you know, describing it as some of the best cpd they've ever had. Um, and I think it's because it's in person mostly and it's discursive and it's really, I suppose, it's quite modern and new for some people who've who are, you know, through no fault of their own, they did their training 10, 15, 20 years ago and how do you get access to the most up-to-date information and how do you get training on it and how do you get to talk about it if you know, if we don't bring it into the schools, um.
Speaker 2:And then the third part is, I suppose, the advocacy um, where we're trying to break down the stigma that we all felt, like we all felt so deeply. It's really one of the reasons why we started the movement was, you know, that crushing kind of oh, I'm so sorry when people tell people that your kid is neurodivergent. Um. So breaking down the stigma and making it like we all we know the challenge. We know it's incredibly challenging. We're not denying that for an instant. But there are also massive positives and we need to be positive as well too, um, so that we can bring more people along and helping us with the challenges.
Speaker 2:So there's that advocacy part um as well, where we work with, like large organizations that we can help with changing their mindset towards even their own, their own workforce or in their communications with their patients or their clientele, that will ultimately trigger societal change. So if you are learning about neurodiversity and what's a better way to talk about things like your language and your attitude towards neurodivergent people is so impactful, and if we can change that, you know we'll we'll make a much better future for all of our children, who really are still so marginalized and excluded. You know it's I keep saying it's one of the last stigmas in Ireland because we've you know we have broken down so many stigmas recently. Um, I love Ireland for that, but but we still feel deep stigma, you know, being being neurodivergent. So that's yeah in a nutshell.
Speaker 1:I'm forever singing the praises of neurodiversity Ireland because I think particularly to things that that the way you approach things is the fact that it is that focus on on positivity and absolutely understanding that there are challenges but being practical about it and sort of acknowledging the strengths and the good in people too, and then also the building of community. I think that you do is extraordinary and how you value that community.
Speaker 2:So yeah, I'm forever singing your praises and I'm delighted to get a chance to talk to you about it on the practical note, sorry, I just wanted to also say that, like we, we also didn't want to, um, identify a problem without also identifying the solution, because so, for so long, you know you, yes, there are problems, but if, unless, you're going to come up with a better way of doing it or the solution, you know what's the point really, do you know?
Speaker 2:And we knew, like we knew, we kind of had the wherewithal between us like to to do that, or we could also, um, you know, we've been gathering up the professionals that we knew have the wherewithal. So we've been into, you know, ucd and Trinity and all the speech and language and psychologists and psychiatrists that will listen to us, that we knew were on, you know, on the same hem sheet as us, and we've been gathering them up. And we know, like you know, people want to do the right thing so and they want to to find the better way and the positive solution. So that's, I suppose, was our modus operandi. We made a pact at the start of this that we would be positive, we wouldn't be a protest group and that we would find a solution and we would present the solution and if it's not there, we're going to build it and create it ourselves.
Speaker 2:So fantastic, yeah, and and as an autistic person, to to sort of not have that tragedy narrative as sort of a standard because it's so common, and to not have that is just, it's a beautiful thing, it really is yeah, so all of our parents were told, um, you know in some way or another that you know you need to grieve the kid that you're not going to have and and that doesn't come from the parent, right, that comes from being told that by, uh, usually a doctor, um, so we want to really move away from that. You know, medicalized kind of pathologizing of our children about what they can't do and their impairments and their deficits and their you know that that just needs to stop. You know the dsm-5, which is the you know the crux of all of that um harmful kind of language about our children. It needs to go in the bin. But like there are so many people like davida hartman and um mave cavanaugh and people like that who are rewriting, you know how you can, how you, how you can do your assessments, you know you don't need to talk in those terms and nobody needs to hear that to understand what you're talking about.
Speaker 2:You know we, we do get told that sometimes oh well, you need to have a clinical. You know form or term saying well, you're very intelligent people, I think you'll understand. You know what um passionate means. You don't have to use the word obsessed. You know there's, there are, there's a, there's a good and right way to talk about things, and I suppose that's what we are promoting and we're not banging anybody in the head or judging them. We're just asking them to respect people's preferences, especially our own, autistic people's preferences, people who are idhd, people who you know and also, sorry, reframing things that have, you know, had such negative and and maybe wrong labels and um connotations and you know, views assigned to them in the past. Like you know, one thing that we're really passionate about is PDA, like pervasive drive for autonomy, and understanding that and how that explains so much of what people haven't understood and have accepted as being like impossible to understand before.
Speaker 2:Like I'm putting this in air quotes oppositional defiance disorder, like I mean an conduct disorder or personality disorder, all of the things that just are so like to me. You know my mystified what what's a conduct disorder? Or personality disorder? All of the things that just are so like to me. You know my mystified what what's a conduct disorder or personalities? And, as a child born oppositionally defiant like I, you know, I challenge you on that. So we want to show that there is another way of thinking about these things. Um, show the evidence, and that's usually from lived experience, and you know that we are asking the people who are persisting in the olden kind of traditional approaches to come with us on a journey of, like unlearning what they know, and learning the better. You know um way to do things and how do you use a mindset cut?
Speaker 1:usually it's an attitude and a mindset you know that's it, and it it usually comes from having been taught something is the right way of doing things, and there's it's. It's so rarely, coming from a negative place, that people have those assumptions or those ways of doing things. It's just what they were taught. And then it is as say, it's making that shift, isn't it? Have you found much pushback around that?
Speaker 2:Some I mean mostly not, but yes, there definitely are pockets of intransigence where, you know and it's funny because the autistic community are labelled as being stubborn and dogged and then there's massive pushback from people who just don't want to change. You know from what they were taught in university like. One example is um, like the speech and language world, who don't acknowledge or, you know, endorse gestalt language processing as being a, you know, another valid way of learning how to speak and um, despite you know, you know we see our children, you know that method works and helps them to learn how to communicate. So, um, but then you've got, like the universities, for example, saying no, you know, we don't, we don't um value that. Therefore, you get all these clinicians who are still not being um qualified properly in it and have to go out and do their own learnings. They're coming to us um, so we do see it all the time. Like aba is another one. We're asking people to stop. Now that you know it's harmful, stop doing it. I think that's like there's a red line has been drawn there. But you still have universities who are training and qualifying people and still being practiced and repackaged um, so, yeah, we do get pushed back.
Speaker 2:We, you know we get pushed back from all types of sources, like you know. Oh, you're far too positive. That's another um pushback. You know that, um, you're not, you know, you're not acknowledging that this is too hard. This is really hard, um, which you know. I will push back on that because I do. I find it really hard, um, but if I don't support the positive elements as a means through which to help the challenges, then what you know, what is progress, unless you're actually, you know, living. We have to practice what we preach. We have to support the positives and also support the challenges. There is no point in just wallowing in the hardest parts. You know and I say that I know like it is so hard.
Speaker 2:I did like and I'm you know I understand I am that I live it. It is really really, really hard. But, um, what I suppose what uh media and uh government you know have fed on in the past has been these woe stories where they, you know you have to drag yourself out in your worst moments to say to get any help you have to. You know that was me. That's how you know I got into this, was going to the minister to say how can it be possible that I am not on anybody's waiting list when I was supposed to be my file? It was like lost on the back of a radiator or something and it meant in the moment, in our moment of crisis, nobody knew anything about us and it was almost, it was almost like a kind of fatal situation in our house and we weren't on anybody's waiting list.
Speaker 1:So I was an angry, you know, furious person, but I had to turn that into doing something positive, you know it there is almost as an autistic adult, I don't have children, um, but even as an autistic adult, I don't have children. But even as an autistic adult, I find that there is an expectation that I'm going to come and sort of show my wounds to people. Almost People want to hear what was really difficult when you were growing up and you know they want to know the challenges and they don't necessarily ask so much about the positives and the workarounds and that can be very frustrating, I found definitely yeah, I mean the whole narrative has been about like harnessing autistic people for the workforce.
Speaker 2:You know how do we get around your hard bits so that we can get your good bits? You know that's been what where we've been going for the last 20 years, as we, you know, blindly follow the dollar. You know it's like, well, how do we make these people fit into our great worker, workforce-type approach? The tick the D? I box and we're all doing our best for the autistic community. That, to me, has been quite damaging, I think for so many but not just autistic people, the rest of the neurodiversity umbrella who aren't at all supported or seen in that um. So yeah, there has been such a focus on just how do I work around the hard bits and and get to the good bits that I can harness your worth, whereas, like if we were looking at the whole person to know from the very start and supporting the child like holistically within their community from the very start, you might not get, never get, you might never get to the really hard bits. You know you might never get to the part where you want to. You know you're like one of the driving forces for me behind this are the awful mental health statistics for the neurodivergent community.
Speaker 2:Um, so if we properly supported children fully as whole humans and like, with all of their needs, and not, you know, saying, oh well, you have to go to cams for this and you have to go to the cdnt for this, and now that you will meet you know that that, um, that doesn't work. So, um, yeah, our model is based on broffenbrenner's ecological um systems where, like the kids at the center and, you know, the next layer is the family, the next layer is the school, the next layer is their social activities. And can we pump the support into all of the layers so that you never have to drag a kid out to a one-to-one appointment an hour away and they should be playing. Their whole childhood should be spent having fun and playing with their peers. Can we make that happen but support it so that that child doesn't become the kid who's really excluded or bullied or, um, you know, hates their own identity or hates themselves so much that they'll consider, you know, self-injury or suicidal.
Speaker 1:You know, thoughts which are so common, you know, in our um community and if you're taking a neurodiversity informed approach, does that then shape how you feel about supports that have traditionally been used with autistic people? So things like ABA or social skills training?
Speaker 2:there's, um, when we go into schools, like that's one of the things that we're really keen on, um upskilling them on, because they all have this idea that you need to do social skills training and that just comes from their own, what they've been trained to do. And so there's a play therapist called gráinne warren I don't know if you've heard of her, no, I don't think so. She has written this amazing alternative to social skills training and it's 18 euro for this um big booklet like 66 pages of the alternatives. You know where you get these scenarios where you know kid a has their hair cut and says to autistic kid, do you like my hair? And autistic kid says, no, I don't, it's much nicer the other way and like, how do you?
Speaker 2:It's like the alternatives to all of that like um, and it's really, really good. Just think the social skills one is. I'm really passionate about it because, um, we still get loads of parents saying, oh, my kid really wants to fit in and, um, how do I? How? You know they want to learn how to do that, but I don't think that's good enough and.
Speaker 2:I don't think it's fair and I think there are plenty of people like on Instagram and places like giving the reasons why and it's because you shouldn't have to change yourself to fit in. If you get a group of people who actually value for your you know wacko alternative, you know wacko alternative, you know sense of humor or whatever it is like, that's where you want to be. And ultimately it means you're telling the child like the way that you think is not right, so you're chipping away at their sense of their own truth and their own. Am I right about this? And that really devalues your sense of you know I don't know what the word is like when it comes to something like, oh, I'm not gonna, I'm, I'm gonna, you know, push down how I feel about this because I'm gonna hurt somebody else's feelings, really increases the risk of being abused, being in an abusive relationship, getting into dangerous situations, not following your own, like internal compass that you're like, you're okay. Just, you know I'm fully okay to have my sense of humor and if you don't like it, like hey ho, and it may be really hard in that setting, in that group of friends, but when you get to the point of having the friends that are on the same page as you. You're like that's, that's the end goal.
Speaker 2:So I fundamentally disagree with social skills training, even for the kids who are asking for it, because they're only asking for it, because there is some idea that there's a right way to do things. I'm not talking about like picking your nose in public, like that's not what I'm talking about. I'm talking about the, you know, the kind of crux of the human you know being the way that you are, the way that you present, the way that you talk, you laugh, you say things the way that you think you know. Um, so really, on ABA, I mean I'm very vocally opposite, anti-aba, because I've seen the harm that it does.
Speaker 2:It was the thing we were told to do and when our kid was three, her hair fell out, all her hair fell out as a result of a couple of months of ABA. But like you're consciously ignoring a child who's in distress because they're not doing the thing that you want them to do at the time. They can't. So it's like, oh god, we have, like we've got to stop this and never let it happen to anybody else again. I spoke to the Department of Education who've said that, until they come up with an alternative, they can't deny that ABA, you know, is a thing that is done in early intervention. In early, and at the earliest and most formative stage of these kids' lives, they're being ABA'd and then we then are repairing them afterwards, you know.
Speaker 1:So, yeah, very anti-aba it's that idea of you know something being evidence-based, because they've decided that there are particular ways to judge whether or not something works. But those ways of judging aren't necessarily what's best for the.
Speaker 2:The child nothing to do with whether the parent sees the kid doing something that they want them to do? Yeah, as they want them to do it, but does the? Is the child's well-being improving? Is the child's like? What is the child's quality of life? Is it whether they um, you know wear the uniform, or is it that they are smiling? You know what are you measuring, and that's a problem. We have also literally just come off a call with the occupational therapist about when we're measuring our impact. Really hard to measure it in a neuroaffirmative way, because impact for us is like improved happiness, improved smiling. You know more. Going to the toilet in a place that's not your home, or taking off your shoes in summer All of these things that are not traditionally measured by anybody.
Speaker 1:It's incredibly important and you mentioned the stigma that we face and generally neurodivergent people face. What do you think? I mean, this is a really difficult question, but how do we tackle that, do you think?
Speaker 2:Yeah, so, like, for me, this is the raison d'etre for our movement, because it all stems from the stigma. All the problems stem from the stigma. So there are obviously the inherent challenges, right, that come with if, if you are not able to speak, to communicate. That's an inherent challenge. But there's massive stigma that comes with everything. You know that. That's one of the most disabling parts is the is the stigma that you, you know you, you will be um, excluded from all the things that you should be doing.
Speaker 2:Um, I'm talking about children now, if we just focus on children, because that's where our um charities focus is um, your whole self-esteem, your self-worth is how you're seen by others. It's like that. I think it's Orion in the Dark, the movie where the um, one of the characters, says like, how, how we see ourselves is through the eyes of others. So from the, from the very start, you are being told that you're wrong, and it doesn't have to be explicitly, implicitly being told that you're wrong, and it doesn't have to be explicitly, implicitly being told that you're wrong because you know you're um. You have to change the way that you make noise. You have to change the way that you move, you have to change the way that you wet dress. You have to change the way that you look at somebody or don't look at somebody, as a case may be. You have to change the way that you um, I don't know all the things that you do. I'm thinking like you know, my, my kid loved to hang upside down all the time and um did that in the classroom and that was like phenomenal because their classroom allowed her to hang upside down. But can you think of, like, the kid who needs to do that, who isn't allowed to do that, and they have to sit upright. So they're like inherently wrong because they have to sit the wrong way.
Speaker 2:Um, so the stigma starts at the very start. It actually starts, you know, at the diagnosis, but at the pre, no, before that. You know you go for a diagnosis usually because there's something wrong, in inverted commas, you are in crisis. You're never doing it as like a oh I'm. You know this is a wonderful thing that we might explore as our child autistic, because you know they're so good at um lining up their cars and they're so passionate about you know, all the credits at the end of the movie, as opposed to the movie, like it's never through that lens, that you're doing it.
Speaker 2:You're doing it from a point of crisis, so it starts off badly and then the reports are usually about the deficits and the impairments and the challenges and you need to go on this list to get this fixed. You need to go on this list to get this. You need to wait, wait, waiting times, early interventions it's all awful and you won't get into the local school and you need to get into this class and you won't get this help and you'll never get that help. And it's like that overwhelming negativity that surrounds all of this. I mean, you saw the protest at the weekend because there are still hundreds of children who aren't being appropriately looked after in school. I'm not putting this at any school store, I'm putting this at our government store. There is no, you know, um holistic welfare plan if I can call it that for neurodivergent children starting at day one. Um, you know, if the you know the neurodivergent mom is going to have a neurodivergent kid, can we start at day one and plan for that lifetime? It doesn't happen here, and what does happen is you get that overwhelming stigma that you know tragedy narrative.
Speaker 2:As you've said, it is starting to change. Tiny, tiny changes are happening with, for example, you know, like neuroaffirmative practitioners who are writing better reports, you know, um, but you've got that. On the one hand, say, somebody gets a really good report that's you know, speaks to the positives, identifies the challenges, gives really you know practical recommendations. Bring that to a school who will say, in order to get you help, you need to give me the worst report. Yeah, because we need to hear. We need to put that then onto the NCSC and Department of Education's table and they won't help you if they think all's rosy in the garden.
Speaker 2:So it's like a vicious circle that we're stuck in. We need you know. It's just like, yeah, so so part of our approach is to go to the NCSC and the Department of Education, say this we can't keep doing this. You've got to. You've got to work with us. And you know, change the language that you use, change the way that you give support, change what your criteria are, change how you do it. You know, be more flexible. Stop demanding diagnosis. Stop demanding diagnosis. Stop demanding a diagnosis. Only a diagnosis will entitle you to this class which has the max support. That is so inflexible and it's excluding so many people. So, yeah, that's part of our advocacy, I suppose too, is at that level.
Speaker 1:But it's yeah, yeah, it's tricky, yeah absolutely, and sort of as a researcher and someone who comes from a research background, I think so much of the research that we've had on autistic experience is defined by non-autistic people. So even looking at something like quality of life, we've only just started to look at quality of life as defined by autistic people. So, as you say, it's kind of you know the quality of life to sort of support someone to become a good worker has been the main focus of a lot of research around quality of life and I think we're slowly seeing that change, in that autistic people and real allies are kind of seeing that we need to redefine how we understand outcomes and what's positive for autistic people. So yeah, worth.
Speaker 2:Like worth is not to be measured just in terms of whether somebody can pay tax or not. You know, um, and that's why we we, I suppose felt like know we have to do something here, because you're talking about harnessing neurodiversity in the workplace. Our children are getting kicked out of Montessori. It's like my kid is not going to university if they can't manage her in inverted commas in her preschool, like. What the disconnect is is incredible.
Speaker 2:You know that like this is still happening every day, that people don't feel like they can support a child whose behavior is too big, or you know they're too aggressive and inverted commas, or you know they're they, they use a device to speak. How can I support that? You know, if I'm not trained and that like that there's, there's been this like I think, kind of um growing chasm. Um, it hasn't. I don't think we've gone on a helpful kind of trajectory over the last 20 years in terms of um supporting neurodivergent people. Um, there's been no leadership on it. You know in terms of from government and you know they're not. I don't think that our trajectory has been um beneficial to all of the people who are in that neurodivergent umbrella, because it's been so siloed, like, for example, just one thing like ADHD children like you don't get into CAMHS unless you have a moderate to severe mental health difficulty. So you've got a whole swathe of ADHD kids who can't actually access any help. That means medication.
Speaker 1:Yeah.
Speaker 2:It could be life-changingchanging. It is life-changing, but you can't get it. There are no private child psychiatrists with waiting lists open at the moment. The only option is cams, and you will not get in there unless you're moderate. You have a moderate to severe um mental health challenge. I'm putting in very commas so there's no idhd pathway at the moment for children, um, never mind adults. I'm not even going to talk about adults. Um that right. And you've got dyslexia ireland so vociferously campaigning right now for more time in exams, more time in exams. There's somebody sued the state in 2017 and we're compensated because they didn't get more time in their exams for um as a dyslexia accommodation. Why are we still talking about this? Why is that not just like done and dusted?
Speaker 2:yeah um, people who have like dyscalculia, uh like, does anybody even know about that? Dyspraxic kids do they get help? Um, no, like, there's so much that goes unsupported. Like the guys we um had a really lovely meeting with the guys from fetal alcohol um syndrome Ireland a couple of weeks ago. They can't even get recognized as a disability. They were all the same um, you know challenges, same umbrella, like autistic ADHD, but can't even get. You know they're at the table to talk about this.
Speaker 2:So, yeah, we need to do better. We need to recognize that there's a huge umbrella there, and I think the sooner that we just start thinking about this as, like, what are your needs? What are your? What support? What supports do you need? You know, today might not be tomorrow, and instead of, like you know well, you have to in order to access a device, you have to get a diagnosis. Then you go through this process and blah, just give them the device, see, does it work? Does it work? Great, you know. On to the next one. You know, I think so that's obviously like, um is what we do. We do not request a diagnosis. We don't have any formal requirements for anything. It's just turn up with the support need and we will support it, you know so um I think that's the way forward.
Speaker 1:It really is. And like, how many of us have one diagnosis, you know?
Speaker 2:me. I've been. I've been through all of the like, you know, uh, global anxiety disorder, ocd, um, adhd, and then autistic and like. But I've also been told oh, now you're, now you're autistic, you have to come off our adult health list. Like, not that I was getting anything, it was on a waiting list, so I have to come off it. So it's like like this is this is not working, you know, and pumping loads of money into mental health supports. Now it's a real focus for the hse and for the government.
Speaker 2:So, but we're missing the point entirely, because if you don't support neurodivergent people, they are the people that show up in your mental health services. We're not joining those dots. You can't support a neurodivergent people, person with their mental health, unless you understand what it means to be a neurodivergent person. You know and forget about what type I am or you know what. I don't do something because of my ADHD or my, my autism or whatever. You can't split me into sections. I do things because this is how I. You know, this is how I think. I think like, quite differently to many people, but you know, just support the way that I think and then you know you won't have the adverse kind of you know impacts, you know down the line. So yeah, it.
Speaker 1:It seems very uncomplicated when we say doesn't it like? It makes pure sense and actually it is.
Speaker 2:I like, I know my lovely occupational therapists who are my, you know my heroes um in neurodiversity Ireland, because I really think an occupational therapy lens on the world, like is really the first place to start um. But I keep saying to them it's not rocket science, um, to support neurodivergent people, because a lot of it is about um being kind and offering choice in how you do things. Like, for example, um can I send a voice note instead of an email? Is that okay? Um, do I have to wear? Do I have to wear the scratchy, horrible shirt that you know has gives me a rash on my neck, or can I wear a round neck t-shirt instead? Um, so, giving choice, being kind, being flexible, um, asking the person also, what do they need?
Speaker 2:Um is, you know, loads of movement and uh, I think those kind of foundational things, like the really foundational things, then, are like the key to actually supporting neurodivergent people and the communication piece. So like understanding that communication comes in so many different ways and happens in so many different ways and that all of them are equally valid. It's not, you know I'm not if I'm not looking at you for most of this conversation. You can still hear me and understand what I'm saying. You know, just because I'm not intently gazing into your eyes, it doesn't mean that I'm saying anything less or that there's anything wrong with me, you know.
Speaker 2:So that part is like so foundational and I think if lots of people just heard that message, I think they'd feel like, oh, that's OK, I can do that in my practice. You know, as like, for example, in GP surgeries, we have these posters where you can, you know you can the GP can signal here all the ways that you can contact me I. You know you don't have to come in for your appointment until I text you. You can sit out in your car. Or you know you can order your scripts by email. Or you know, if you don't want to sit in this waiting area, you know, stand in the we've got a wee room down the corner or whatever it is Like. There's loads of different, obviously, settings, but the principles are the same and I think once people understand that that's really like that's really mostly all there is to it, that that then kind of opens up people's ability to support and say support like, just include, include everyone you know as equal.
Speaker 1:So yeah, it's not rocket science it's not, and, as I always say it's, it's almost always little tweaks, you know it's, it's never huge things and it's about sort of it's really it's. It's that sort of double empathy piece, isn't it? We're going like this works for me. Should I assume that it works for everyone else? Oh, probably not. Maybe just ask them what works for them, you know, or give them options of what might work for them.
Speaker 2:Yeah, so, um, one of my bugbears at the moment is the? Um, the kind of uh, justice system, obviously because I work in the justice system. And um, the uh, I suppose like accommodations. I'm saying accommodations, I hate that word accommodate. Why does one human being have the right to have to accommodate another like? That, to me, is fundamentally wrong. You know, no one is more superior or better than or have more rights than than anybody else. We have a responsibility to ensure that all of our human fellow humans can access their rights. That's all of our responsibilities.
Speaker 2:So in the justice system, obviously, there's a massive inequality in terms of ensuring people have access to their rights when they're in that horrific system that I am part of because I I work in it, um, but you know they like, for example, how do we make sure that? Um, and even the language around it's so awful. They're called vulnerable people, like people who are neurodivergent. Still, you know, um, how to make sure that they? Um can participate in court proceedings, and just the language around it is so awful. Like, can you imagine, right, if you don't, if we don't ensure that everybody who works in this system understands that I, you know, neurodivergent people find it really hard to make.
Speaker 2:I can't, can, sorry, find it really hard to make eye contact for a sustained period of time, or with particular people, or in a certain way or whatever way. It shows up, or maybe they don't at all. But if you have an idea that somebody who doesn't make eye contact is probably lying, that's your prejudice, that's your mindset. Automatically the neurodivergent person is at a disadvantage when they come in to give evidence to. You know, whatever it is, what are we going to do about that? You know so like there, there is so much work to do. There are so many of these um stigmas and um things to to break down and to change and to but to explain why that just isn't. That's not good enough anymore to to operate that kind of understanding. You've got to listen and then understand and then implement the you know the right way to do it.
Speaker 1:So it does feel like there's a a groundswell of change happening slowly but surely, with groups like yourselves, where, where you're able to sort of articulate, yeah where those issues are and where those changes need to be made, and I think that's it's an exciting time. I think from that perspective it can't happen quickly enough, but at the same time it is an exciting time that it does feel like a lot of people, individually and collectively, are coming together and making those changes.
Speaker 2:I think you've hit the nail on the head there. It's for us to articulate it for everyone, right? Because there have for so long there have been people who can't articulate it, for whatever reason. Usually it's because you know society aren't listening or don't care, don't want to make the effort to find the way to be able to communicate with that person so that they can articulate it. But for those of our community and to make sure that every single disability or difference or, you know, divergence or whatever is properly understood and then included and catered for All of us. And like there's so much intersectionality, all of us and like there's so much intersectionality, uh, I think there's a massive synergy or I don't know what the word is with, uh, women's and children's rights, just globally.
Speaker 2:I mean, for so long in ireland we've been second class kind of afterthoughts, you know, and you still think, like the national maternity hospital is in hollis street. You know that that alone we are. We still haven't got our children's hospital open. It's a disaster. And look at where people are working um at the moment with children in those, you know, buildings from the 17, 1800s, um the magdalene laundries. That were only now we are only now, you know accepting that was really wrong to do that to our girls. We did. You know, um, we are slowly shaking off the shame and the guilt and everything from the church, but that's aren't we haven't yet, because we are still not allowed into those schools properly, we're still not fully valued, as you know, equal members of those lovely, shiny establishment schools that, like you know, are really good at their you know test results and all of that.
Speaker 2:So for me, there's massive overlap also with um, obviously um, massive overlap also with um, obviously um, the lgbtq plus um movement and trans rights and, uh, just, I think, like this realization that there is no one way to be and there's no one right way to be and you are not, you are not better than anyone else just because you conform to some kind of idea of normality and inverted commas. You don't get to say that, you don't get to think that and you don't get to apply those you know restrictions or categorizations to anybody else. You know, yeah, that's, the responsibility lies with everybody. So there is a groundswell um of people who want to do better and I think also, like the more that we talk about this, the more that people are willing to say that actually?
Speaker 2:Do you know what? It's me, or it's my brother, or it's my sister, or actually my auntie, or you know it's all of us, the figure, figures. You know we don't collect data here um at all properly, because then we'd have to acknowledge the the size of our problems. But, um, I like it's at least a third of the population here in neurodivergent.
Speaker 2:I honestly think it's a lot more than that I agree, yeah, definitely and the more of us that come out and say, look this me and you know, the better, because the whole range of different types of people who come out and say I'm neurodivergent, you know, and the better, because the whole range of different types of people who come out and say I'm neurodivergent, you know, and these are my challenges, or this is what I'm able to do, or I'm really good at, or you know, whatever it is, the more just the more conversation, the better you know.
Speaker 1:Yeah, yeah. And that's one of the reasons why I love having this podcast, because for a lot of people, it's the first time that they've heard two autistic people or neurodivergent people speaking to each other, you know, and that's massive.
Speaker 2:I think it's funny because, like I think, once people do hear more, they'll like be like oh God, yeah, now that I think about it, that's, that's you know me, or whatever, whatever, um, and uh, yeah, I think some of the like. I think ireland is good because I think we're kicking back to some of the negativity that's coming from the states. You know, um, like, we're very, very um modern progressive, my um country in terms of um outlook. I think as well too, like because um of the change that has happened in the last 20 years or so, I think we're able to think for ourselves and say, oh, no, like, obviously vaccines don't cause, don't cause autism, and also to question that. You know I don't want to swear the crappy narrative that rose up there.
Speaker 2:You know, after Trump's inauguration and you know the disability cuts in the UK, that it was OK to come out and say, oh, you're all. You know, you're looking for labels. All you want is, you know benefits. I'm like sorry, someone tell me what benefits that you know I'm supposed to be getting, that you know, um, magically, um, come with some kind of a label. Um, yeah, but I think ireland is like there's been a knee-jerk reaction against that in a way, um, also because, like, we don't want to go down that road, um, and I think also because people realize the massive intersectionality. If you start, you know, complaining about, um, you know people just looking for an autism label or whatever, like you're you're talking about, you know a huge swathe of the population who are also all sorts of other things as well too, you know. So, yeah, I do think Ireland is a little leading light, you know, in the diversity affirming kind of movement.
Speaker 1:Yeah.
Speaker 2:I think we've got to also be careful that we're doing. We do it justice and, and you know, proper justice in terms of like the whole gamut of disability needs to be properly supported. Now you know we've signed up to the unc, rpd and the optional protocol. We need to properly implement it and properly ensure that there's access to justice if your rights are not um implemented which we haven't done to date but for everybody, you know, for everybody that falls under that umbrella, um, and you know, obviously the the last election was like a flag waving kind of ceremony at disability. Like we're going to start um honoring our commitments, but like I don't see any evidence of that yet. Certainly the protest for equality and education at the weekend is ample evidence it's not happening. But I think that ground spell is there right. So I think that they're the people are saying we want this.
Speaker 1:It's just, you know, everyone else who is in charge needs to catch up yeah, yeah, I agree, and I think, as you say, I think we have a almost a unique relationship to social justice as a country. I think we've, in recent times, had to do and in previous times had to do so much campaigning and so much work. Yeah, create a just society for ourselves. That I think. If, if people make that switch, if they understand what neurodiversity is and then make that switch to understanding it as a social justice movement as much as anything, I think that can make a massive difference.
Speaker 2:Yeah, yeah, 100. So, like all of the other kind of causes that people have got behind, have been that you know we can't tolerate oppressing. You know a section of our community because we've come from that and we know what it is and we're disabled people. That's baked into things, it's inherent. That's oppression. Um, I think people will get behind it. It's just getting.
Speaker 2:It's quite hard to get the voice out there. Um, I suppose because you're disabled in the first place, that's already really hard. And to you know, advocate, get out there. Um to organize something that's coherent and takes everybody on board and that everyone can access is really hard to know. Um, so I think the more people that understand well, actually, this is my family too, this is affecting me, it's affecting my family and that are willing to speak out about it, that's where we get the cohesion, I think yeah definitely um and would you have any advice for parents or families where the the, the young person's family, is just sort of identifying as as neurodivergent and sort of finding their feet in that and as a family they're finding their feet?
Speaker 2:first of all, come to us, join our support group um and uh contact information or info at neurodiversityirelandcom. Um. Look up our website and um, yeah, definitely uh. Link in with like-minded parents and you will find people. Like, even through through our group, people are finding each other in other areas of the country and coming together and having that kind of um.
Speaker 2:You know the strength that comes from knowing that you're not doing this on your own. Um and young people um, it's much better. It is definitely much better nowadays and that you know there are, for example, neurodiversity weeks in school and you know people are learning about it more. It's not enough, near enough, but it's definitely getting a little bit better. But for young people to know themselves first of all, to understand they are perfect, for it to start off on a good footing that this is. You know your strengths are excellent.
Speaker 2:Let's just talk about the strengths first of all. You know you're going to know what your challenges are anyway, but let's um work to the child's strengths and like, really, if the child feels really supported and understood, I think that is like a long way to go down the road. You know so um, previously, I think, where the kid maybe wasn't told about their identity or was told about it in a really negative way. That's really, you know, has been, has probably been, the root of a lot of angst and difficulty, um, not just within the family, but then, you know, in other settings as well too. So, um, connecting with other people, I think, is a huge um thing to do and um, yeah, being really compassionate to themselves as well, like, um, and finding finding similar people, like finding a tribe, you know finding finding one other person. You know just get your get the, get the other person who gets you. You know um, and yeah, like, I like contact us. That's what we're here for, you know.
Speaker 1:So yeah, and then my very last question is is there any advice that you'd give to your younger, younger self if you could um?
Speaker 2:like, don't listen to anybody else. I did for so long and that's probably what gave me such anxiety was listening to everyone telling me you're too much, you're too dramatic, you're too sensitive, you're too annoying, you're blah, blah, blah, blah. You know, um, and if you didn't listen to that then you know you might have lived in your own head longer and felt like you're bang on in the way that you're um operating. So I would say, like, just be yourself, be yourself, be your full self, and and that's cool, you know 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 Centre. If you'd like to know more about Middletown, you can find us on X at Autism Centre and Facebook and Instagram at Middletown Centre for Autism. Go easy.