Episode 021 with Ema Cubitt

What needs to change for autistic people and families in Northern Ireland?

Rebecca is joined by Ema Cubitt, Northern Ireland's Independent Autism Reviewer, to chat about autism, education, and creating real change through listening and understanding.

Transcript

Copy

SPEAKER_00 0:00

Welcome to Aiden Equips, the podcast that shares real stories, practical tools to help parents, carers, educators feel equipped for the journey of raising and supporting neurodivergent children and young people. Whether you are tuning in with us today with a cup of coffee in hand, you're in the car, or you have a rare, precious, quiet moment, I'm really glad that you're here and thank you for tuning in. Today, I am truly delighted that we are joined by Emma Cupid. Emma holds the position of Independent Autism Reviewer for Northern Ireland. It is a ministerial public appointment independent of all of Northern Ireland government departments, and the reviewer reviews the adequacy, effectiveness of care services for autistic people, their families, carers across the whole of Northern Ireland. She monitors the implementation and impact of autism strategies, laws, practice, funding. A big role. A big, big role. And more we've needed it more than ever here in Northern Ireland. Lots to talk about, lots to get into. And Emma, thank you so much for giving your very precious time to be with us today. I guess a really good place to start is to ask you a little bit about yourself. And I kind of like listed that role there. But for so many people, I think still this will be a new concept. So tell us a wee bit about it.

SPEAKER_01 1:19

Okay, so start with me and then we'll speak about the roles. So first and foremost, um I'm a mum. Yeah. Two wonderful boys, um, and I have a wonderful husband. So my boys are 14 and 17, and and I have spoken quite publicly about my youngest Callum, who's autistic, very proudly autistic. Um and so I before we had the the kids, my husband and I had been together for a very, very long time. Um, and I we went through university, etc., together. So I qualified as a solicitor um back in well, early 2000s, um, and was in private practice for a short time doing family law and things like that, which which I which was fine. Um but then I shifted into the public prosecution service. So I was a public prosecutor for over 15 years, and part of my role near the end was as a youth specialist. Um we obviously had the kids. Um when Callum was very young, um, he became very, very unwell with seizures, etc. So li life took a slightly different turn. Um and we knew probably from an early age as well that that he was autistic, um, but but that wasn't really that that was that was okay, but the issues around his health were really prominent. That was our our kind of focus. Right. Um so when he was about three, um then I suffered uh uh the the start of what was a really chronic period of of ill health, um, and I suffer from chronic migraine now, mostly now under control, but I unfortunately wasn't able to continue to work. I was absolutely devastating. Um, and I always say just to put it into perspective, um on my 40th birthday, I was on a Zimmer frame. Yeah, and I'd by that stage been blue lighted to the hospital a number of times. So um that changed my perspective. Changed everything else. Everything it was really, really tough. I was struggling, we were struggling as a family, we were already quite isolated, right? Um, and and I was angry with my brain and my body. Um so but but what I learned over that time was was was really two main things in that how quickly you can go from being a completely able-bodied person to becoming very disabled. Um, and also the things that I uh encountered in terms of sensitivity to noise and to light was were some of the same things that that our son in particular struggled with. So noise, light was actually physically painful. So when autistic people talk about sort of those sensory differences and and that some things are really painful, I have absolutely um the other thing was our son, obviously, uh Callum had been really unwell, been in and out of hospital, was terrified of hospitals. Um and one of the times I was in hospital for for quite a long time, um he came into the ward, which was a it was a frightening ward. Um it was a stroke ward, um, and um he came up the corridor with his hands over his eyes, and I saw immense empathy in that moment of a child who had so much going on in their own life, but they they took such a brave courageous step that I mean I I didn't particularly need him to come up, I thought it was too much, but that's a a big standout moment in terms of you know what you know, love really. Um so I mean I I'm quite defensive when when we hear criticism around kind of empathy and all of that, because we I see an immense amount of empathy and love in our house. So then to shift onto the role. So I had five years where essentially what I did was support people um who were having just just just as a normal person, not you know, it was it was sort of for friends and family initially, but people who were struggling with um, you know, their statements, educational bits and pieces around that, and also um the other one, which I suppose I went down a bit of a rabbit hole with, was PIP and DLA applications and the real unfairness around those and the difficulty and the trauma of sitting at a table trying to write all those things down to applications, yeah, and the the the traumatic process and the amount of people who sort of gave up um initially. So that is what I did, and and I always thought I'd um I mean I was in my recovery, I was bored essentially, you know. Um I was just to being so kind of yeah, life moved quick and intense and like yeah, big role. Yeah, so then this role came up. Friend messaged me and said, Have you seen this? I was like, No, I have no intention of applying for anything. Um, and but I I thought I'll do it, I'll apply it. We had loads of things going on in our life at the time. It did not need to be applying, but actually, once I started to look at the role and I really delved in, it was in the preparation for the interview. I thought, oh my goodness, I really want to do this. I need to care about this. Plus, my skills as a lawyer, yes, I thought would be would be really useful. And I felt ready. So by the time it came to the interview, I mean I remember preparing for the for the interview, and I went to bed and I I was lying awake, it was two in the morning. I was like, no, no, I'm gonna get up, I'm gonna change my presentation, I'm gonna make it's about connection, and I changed it all uh and was delighted to get the job. Yeah, and we didn't. Um the problem was at that time with with all the things that were going on in government, I waited. Um I knew I'd got the job, but it was over a year before I was actually formally appointed. Um, so that was a really strange um kind of Schrödinger's cat kind of I do have a job and I don't. Um and the reality is there's no equivalent of this role anywhere really globally.

SPEAKER_00 7:03

Yeah, which I loved hearing that because I got excited, you know, that I was like, well, we're we're doing something, you know.

SPEAKER_01 7:11

And we're doing something different because normally, as you know, we have lots of different commissioners at Children's Commissioner, um, and those are very, very expensive roles. So the the the idea, I suppose, behind this was we'll have a part-time kind of more value for money role. So it is part-time. So I started with a laptop and a computer and no budget and just little old me. And it was really scary because there's no model, there's no precedent. You were starting something new, yeah. I'm setting up a public office, it comes with loads of boring bits and bob. So um not go into the details of the fight I had at the start, but but now I do have a head of office and I do have somewhere sort of broadly to call home in a sense, uh, and there's there's lots more kind of kind of structure around the role, um, but it is a completely blank sheet. So I feel in addition to the work that needs to be done and the breadth of it, is there's a pressure to set up something that's sustainable longer term and is actually adds value. Okay. Um, so I'm in the role for five years, I can go for another five as long as I um well if I want to, and I'm found to not be really bad at it. Um, and oh, just just on that point, actually, I'll tell you something quite funny. So the the day that so I'd been appointed, and I was going up to meet the Minister Nasbett who who had made the appointment. Um, and as I was going out the door, my my son uh said good luck, and I said, Thank you. And he said, Has anybody done this before, Mummy? And I said, No, they haven't. That's good because nobody will know if you're doing a really bad job. I was like, Thanks. I think that's reassuring. I think that's kind, yeah, it was really nervous. I love it. So, and one of the problems I suppose I've encountered is just the breadth of it, and and you'll know, and other people listen to this, so we'll know that that there is so much to be done, and it is exciting to be in this role, but at the same time, we have to be honest and recognise that we've had autism legislation for 15 years, we've had successful strategies, um, and we're not doing well. Those strategies that have been in place on that legislation never once touched my life or my child's um or or any of the families I know. It had absolutely and I mean that sounds like I'm not being negative, but we have to be realistic. Um, and at the launch of my event, which I know you were at, one of the key things from from my report, it wasn't, I mean, it on the outside potentially, particularly on social media, probably seemed like a celebration. It wasn't, it was me saying, We are doing really, really badly.

SPEAKER_00 9:40

Yeah, yeah.

SPEAKER_01 9:41

And what we would do see is lots of activity, which I call busy work. I'm not it's not that nothing's happening, yeah. But the the delivery of what was promised by our government is not happening. So that's essentially if you want to boil my robe down, yeah.

SPEAKER_00 9:58

And I really am even in that, um, you know, you kind of like holding accountability to those laws, those legislations, you're challenging them a wee bit, which I think is incredibly positive. I think people even listening, you know, people will have a complex relationship with this stuff, and with any form or connection with government and immediate, you know, expectations or hurt, which is completely rightful or frustration. I have many. And I think there is uh encouragement in terms of someone's role now being someone who is um challenging, and I love that idea of like you're like that's busy work, you know, like you know, when you're I'm thinking my brain's gone to whenever I was like 17 in my first job in a shoe store, and you know, it was like quiet, but you needed to look like you're busy. And I was like moving shoes at like a small angle constantly, so no one noticed that I wasn't actually impacting anything, but I was like faffing around, nearly as my mum would call it. So I think that's really interesting in terms of like what it has felt like for a lot of families, is there's a lot of busy work, there's photos, there's news. Oh, look at this campaign. Okay, what's actually then being followed through?

SPEAKER_01 11:05

So the key question is always going to be do people, real people in Northern Ireland, feel the difference? No, they don't. And until that I mean, we talk about there's lots of language you can kind of bolster that with around outcomes and impact and data, but the the reality is, is life any better? No, it's probably worse. And I did a survey um and we got a huge response to that, and I and I'll be honest, I I stuck I've started to read the free form comments, and and as robust as I am, I find it very distressing, and and people um yeah, and no, we're not doing well. So, I mean, I I'm not I can't deliver services, I I can't, you know, I'm here to really go very honestly, and I am not frightened of saying to government to eyeballing them or MLAs or ministers, yes, and be on the radio and say, no, you're not doing good enough. And you know, sometimes when we look particularly, you get into kind of the strategy and and whatever, um, you will see lots of nice again, busy work, but kind of fluffy things, nice things that are tinkering around the edges. So I'm really picking apart and going, are we getting to the really tough stuff? The things that you're uncomfortable with, you know, that that's I suppose where where I get really kind of stuck in.

SPEAKER_00 12:27

Yeah, and I think that stuff is a bit that people often don't want to hear about and you know, don't want the reality of it. And then you are sitting reading, meeting. I know with a lot of families and autistic adults and and hearing stories as well. Um, you know, that is one of your um kind of that evidence approach informed your clear vision that you stay out of in Northern Ireland where autistic people of all ages, which I think is important to know that they belong, feel valued, supported to be their whole authentic self here. Beautiful vision, one that I share with you, um, one that I am with you on, and we'll champion that as well. And I guess even as you're saying, the reality is we're not there, we're very much potentially at the other side currently. What do you think some of those key challenges, those like nitty-gritty things that are happening right now in in Northern Ireland for autistic families, like young people and their families?

SPEAKER_01 13:18

There's so many different that's such a quite a tough question. I think there's so many different things, yeah. Um, and for each family it's different. So I suppose if we just start with with autistic people of families and cares. So when I say that, I mean all autistic people of all ages and all um support needs, whether high or low, whether you have a learning disability, whether you are um seemingly coping in life, but secretly not. You know, it is I'm talking about everyone. So we know for a cohort of our autistic population who have very high support needs and some who are also medically complex, their challenges are are very different. Um I've been really shocked at some of the the just the lack of really basic support. Um for others, um it's finding, you know, navigating school and feeling so lost and just struggling to find a person or or that flexibility. There's just I mean, that's such a huge question, and I could go on and on and on. Um and I think I mean as as much as I thought, right, well, this, you know, we know about autism now. We'll start here. Um, midway, kind of I dropped the baseline massively because I under I now realise we don't really understand properly autistic people, their experiences, what their struggles are, what they want. And I think that's probably the biggest thing, the biggest challenge I've had is around you know, engaging with autistic people, one or two people, um or you know, in a in a forum is not enough. Um putting out a consultation. I mean, not we're not all familiar with the consultation process, it's not helpful. Um, and you know, I I kind of think how often do we say, and I'm I mean, we as a society, but also our government say, what do you want? What do you need? What do you need and what do you want us to do? Um, and I I actually over the last couple of days I've spoken to through various discussions, kind of the idea of how you know, quite often trusts or education authority or other companies we set up these groups, they last for eight to ten weeks, um, and we pat ourselves on the back because we're doing all this, it's really good. And I'm thinking, but what about the rest of the time and the rest of it? I I want autistic people to be authentic, that they can go where they want to go. Um, I mean, there's some really good practice again, that's another issue. Um it's not one or the other, it's not great practice or you know, or or awful. We're we're somewhere a messy place in between, there's just no consistency. Um, so I think we just need to really understand what is really needed. Okay.

SPEAKER_00 16:01

Um and would you say that's a good starting place of like, because you know you're talking about in your role blank sheet, how exciting, how intimidating, where do you start, kind of thing, but how do you make it sustainable as well for future? Do you think that starting place is really important right now? Of like, right, what do these families need? What are these autistic individuals, what are they saying they need?

SPEAKER_01 16:20

And then Yeah, because then because then what happens, I think, is you know, broadly across government, and I'll always come back to government, uh, and the you know, because that is where the big decisions are made, and and even in terms of planning and money. But but sometimes we sit, uh, and I just say we to keep it less aggressive. But we the and the government, and I'm not part of the government, but the government spend a lot of times planning and thinking and getting policies, but it's the doing bit that it is really, really difficult. I mean, there are some policies and frameworks and models, and I mean I I just really get so weary of the number of things and the groups and work streams and pieces of work and all of this. But the reality is you know, it can take years, even decades, for those things to formulate, they need to be consulted on and they need to be invested in, and actually people are going, I need help right.

SPEAKER_00 17:18

I'm in the crisis right now. Now, yeah, yeah, yeah.

SPEAKER_01 17:20

And and I think there needs to be a greater acceptance of we have not been doing the right thing, we have not been doing well, we need to get our finger out. Um, but in saying that, as much as I part of my role is holding government accountable, we need to remember that everyday interactions um across the whole of society are really, really important. But those are the things that can really make a difference. Um that's sort of corner shops, cafes, wherever cinemas, um, those everyday interactions, um, you know, even as family members, as friends, those all really, really matter.

SPEAKER_00 17:52

Yeah, yeah. And I think that that's that whole approach to like changing the world around these individuals, not the individuals themselves. And I think even coming back to some of that stuff you're saying, of like, of course, it's such a need because maybe for years the difficulty or challenge has been that assumptions have been made of what these individuals need or don't need, or what these families need or don't need. And we see things being put in place, and you're like, what that has nothing to do with anything. Have you been in the school recently? Have you talked to a teacher? Have you have you listened to parents? I think for me, like, even in my role, and like I've I I was a teacher, and even in this profession, which I adore, and being able to enter like yourself, like every space, and you get to know so much about everything, everything opened. Um, but I have that incredible level of frustration then when I look to government and I just see mess and I see people who've never experienced it. Like, I love that you introduced yourself at the start of the sema because we need to hear the human. We need to hear the person who's experienced all of this stuff. He has a heart who's a fighter, who like is gonna I'm I'm not scared of not talking to you about something and you being like, well, I'm deeply offended, not talking to you again. You know, that you're like, I've had tricky conversations here. I've had lots of tricky conversations in my life. I'm not scared of those, I'll lean into them with you, but I also have those personal experiences, and I think that's vital. And I think the frustration, even as a professional in this field, is looking at people who are making it decisions and be like, no harm. Yeah, no harm, you've not got a clue. Like, or come and speak to us, come and actually hear the good that is happening or what people are doing. I remember really early on in my career with Eaton Consultancy that um I was at an event that there were lots of MLAs at, and someone was like, Oh, we've made such change and such impact. And I like I'm quite like yourself. I'm not scared of calling people out. I've been raised as a woman like yourself who's not who when people say no, I say, Well, why not? You know, rather than it's um my dad used to be like, You're just asking the wrong person, like you're talking to the wrong person. So very much happy to lean into that. And I remember talking to him, and I was like, and actually, it was it with a microphone in my hand, and I was like, honestly, I'm I'm gonna be really honest. If this had been successful, if this was working, I should not have been able to build a successful business around supporting this because it wouldn't be needed, and likewise my role would be. It wouldn't be there if we were doing a good enough job. And I was like, you know, when you're sitting there, I say try not to eye roll, I absolutely was eye rolling, but like being able to then be like, I just want the honesty of like messy, we've kind of messed this up. And I think also that there has been recent, even when this podcast airs, like it'll still be ongoing of like it feels messy, it feels so messy at the moment. I know your frustration in that. I read um you know your statements around all of the stuff around like summer schemes being like cancelled overnight, dropped the next day, and people like it was like whiplash, like genuinely, like my frustration and anger around that, and like I actually felt physically sick at that point because I used to volunteer at summer schemes, like I was there. That was part of my like love of getting into all this too. And I saw the respite it gave. I then did respite work for families, I can see the power of that stuff, and I was like, no, I actually could vomit the fact that this decision's been made just like off the cuff because it doesn't impact that individual. And I think I I read your statement in terms of like how it does feel messy and that whiplash that's not good enough, that pull back and forth. I think for parents and carers, probably and professionals, there is that like, what is going on here? That logical decision, like what's going on? Yeah, so help us out a wee bit. In terms of like what practically like can you encourage us or advice for us listening? So it's cares educators.

SPEAKER_01 21:32

It is messy, and probably a large part of my job is is trying to get my head around how things work. The mess, yeah. And they don't work. And one thing that I mean, living living in the house that I do, and having done the job that I did as well, um, I have to repeatedly say to myself, Emma, you cannot apply logic to the city. Okay, yeah. So things should be straightforward and logical. This is why we I love spending time with autistic people, is because they ask really great questions and there's such a logic, and there's a there's almost like the the fog gets lifted, and you're like, Yeah, why is it not like that? So I'm not autistic, but I am the autism reviewer, and I don't speak for autistic people, um but but I can lean into what they've taught me and those the the why the why questions, but it is messy. I don't understand why things don't happen, I just don't. Um I mean the more I that every day that passes, I'm just this just doesn't work. Right. Um, and I think there's lots and lots of different layers. So I suppose this year I'm trying to go back way, way, way, way back to the start and go, right, we have this law. Um so let's the one of the first things in the legislation is around prevalence, and the prevalence data came out lately from Department of Health. Yeah. Um so I have a real issue with that data. So that and this is probably going to sound boring, but I do think it's important for people to know. This is a kind of one example of what the kind of thing that I do. So the that the data comes out, but that's based on the census, which happens one day in October, um, and you have to have been present, registered, and present in school for one day at the at the time of the census. Now, over the last three years, and particularly the the last two summers for me have been consumed with um the SE and placement crisis. So we know that some children don't start school in October because they have no place. That's not taken into account. And alongside that number of autistic children that were counted in that uh census, that that they're diagnosed that that that essentially is administrative data. Correct. Right? Yeah. But at the same time, we have almost the same number sitting on wait lists who will not be counted. So um, one of the struggles I find in my role is what now that I'm really in it, and I'm speaking to people who make decisions, speaking to our MLAs, who there's an and the narrative, particularly coming across from England and some from America, which is leaking across, is what is wrong with our society? Why do we even increase in SEM? Blah blah blah blah. So that's just a really tricky conversation. I'm just that I could do the role just trying to get knocked that on its head. So when I say what I want to say is we actually don't know our population, and you're asking the wrong questions. So we do have data on kind of health, who's on a wait list, but I can't compare that to the the education kind of admin data. So when we when we find that there aren't enough services, there aren't enough support in terms of respite, um are we surprised? Are we? Because we're not really planning, and and I suppose part of it is me going, have you ever thought about all of the other things that are happening? You know, and we we know about children and adults, sort of, I mean, in terms of the health side and the data that's gathered there, that that is just really service throughput who's on a wait list and and who's been diagnosed. But but those people who are on the list waiting for assessment in some trusts, by the time they've triaged those people and they get on an assessment, almost all of those individuals get a diagnosis. So there's kind of a real balance around that. So there's there's issues like that which I'm kind of really trying to pick apart to say that and if you apply logic to it and think if we knew our population, if we knew what we're planning for, but at the minute we don't. So, and and just as a slightly different side to this for for parents and professionals listening, is that you know, there's a system that has been designed not necessarily with you, your profession or your family or your young person in mind, and you're navigating a system that was not built by you or for you. So when we find that for parents in particular, and professionals as well, who do raise concerns and feel kind of shamed or blamed, just remember you're navigating a system that is really, really difficult. Absolutely. Um, and I mean, if I suppose I watch the education committees quite a lot and some of the things around there, it it seems like it's getting more complicated rather than less. Um, again, another messy part and another kind of outworking is so the pressure we know that it's coming into schools and teachers through the kind of pace and uh of reform, education reform. We have to ask the question of if our school staff, if our teachers and and our classroom assistants are stressed and under pressure with change and change is difficult, what happens in this school environment? Because we know that you know, school experience, a good school experience for all children, including specifically autistic children, is relational and co-regulation. And I know as a parent that if I am not in a good space, the change is not regulated, not regulated, and I think that we're going to see more dysregulated adults who are stressed and their capacity to crisis constantly, and that really concerns me. So it's again, it's these conversations around we need to support the people who are supporting our young people. That is so incredibly important. Yeah. Um so that that didn't probably really answer your question.

SPEAKER_00 27:32

I think it's no, I think it's important to even hear from you in terms of like, you know, you're you're not people might be like, oh, it's so naive to da da da. You're not, you're in it, you're trying to figure out the mess and and weed through it nearly to try and be like, right, where do we start? How do we move on? And I completely agree with that in terms of that's why I set up Eden of like support those who are supporting. I love teaching, but I was like, there's 10 kids in this room, there's 10,000, 10 hundred thousand million kids that need this support, that need this care. And and that's I guess why I started and wanted to do something that would help the masses. You know, I always say people are like, I love I love working with young people, and I still do a lot. But have people been like coming and help my child? I'm like, I I can and I will, but I want to support you as well because I can be there for six weeks, but you're there forever, like, and and I want to gain confidence in teachers and educators to know that in their space, like things they can do that are really simple that can be like massively impactful. I think probably listening to this, like I wonder if there's just like obviously a lot of frustration. I think, and something we had even talked about prior to this podcast was that phrase that I definitely have grown up hearing in Northern Ireland. It's been spoken over me a lot about how, like, uh, nothing changes in Northern Ireland. It is my most hated phrase that I hear from people. Makes my blood boil. I understand where it's coming from, but I I genuinely believe it's one of the most unhelpful things that can ever be said. I have noticed a re-trend of that recently from a lot of different sectors. Um, when I first stepped out and told the school that I was working in here in Northern Ireland that I was gonna do what I was gonna do, they said, Well, good luck. Um, and funny enough, it was an older white male, and he said, Good luck. I'm sure we'll see you back here soon because nothing ever changes in Northern Ireland, so have fun, kind of on your rehobby trail. And I was like, bit like yourself, you don't know me, you watch, you know, watch this. And I hope they hope they have. I hope they have, and I think that has always irked me a wee bit. I spoke at a uh Global Young Leaders conference years ago, now maybe about four years ago, and I was asked to speak on a panel about this, about like, and it was so oh and it was so horrible because one of the questions was like, What can other countries? So there's 190 countries represented that day, or something like that, and what can other young leaders learn from Northern Ireland about like growing from like crisis? And I remember reading that being like nothing, you know, like that was where my brain was nearly programmed answer, and I was like, Whoa, hate that that was the first thought. And then I looked at the countries and the young people and the leaders that were coming to this, and I was like, No, like so much because so many of these countries are still in war and crisis and all of this stuff. And something I remember going back through was a phrase that stuck with me that I really you know I said it, but not me, maybe like I love that, but I really was pleased my brain got there was that like we have to we have to create in crisis, you cannot lie down in it. Like you'll get nowhere if you lie down, and and people do lie down in it, and I understand because it gets tiring, but we've got to create in it, and I think that's something we as a country actually have done really well. Like, we look back in the troubles and things, like in that horrific crisis, there was amazing things created. Like, we have the top like trauma surges that were being flown all over the world to teach other people, and I think when I was at this maybe sounds like such an extreme way of saying this, but this is my brain. When I was at your event, that popped back into my head because when you said nowhere else in the world has this, and I was like, Oh my gosh, imagine if Northern Ireland was being flown around again, or people were like, We'd love to learn how you're doing this to support um families and carers, or you've changed your whole school system, and people might be like, Oh, here she goes again, this hopeful girl. But I honestly think those glimmer moments we have to cling on to to be able to actually change, and change takes time, right?

SPEAKER_01 31:10

It's it does, and it's difficult. Yeah, and part of my role is understanding that change is difficult, not only for people, but for for systems. Um, and I mean there's that computer says no, is and yeah, there there are times when I'm frustrated and think, why can we not just let's just do it. Let's just do it. Let's just do it. Come on, guys, let's change it. And you know what's the thing in the education system? Yeah, I'm like, guys, I'll plan it. Yeah, we'll sort it. And there is a risk adverseness, uh, you know, particularly in government, but sometimes you've got to be like, let's do it, and if we're wrong, that's okay, it's okay to be wrong. Right, yeah. And you know, that's probably me as a parent who got things wrong loads and loads and loads and loads, and was like, Wow, this situation, I completely agree at this. Okay. But being able to say so sorry, I've got this. And I'm I'm really comfortable with learning from it as well. I'm really comfortable with being wrong, but being wrong quickly, you know, turn turning around quick. Yeah, go ahead. Right, no, not the right choice. Yeah, yeah. Apologise, turn it around, do better. Um, so yeah, there's just there's so many things in my head right now. Yeah, I mean, just in terms of like I'm thinking, um, you know, there are so many questions to be asked. Like, for example, there was a a motion in the assembly around um fit-for-purpose autism services. So um I came out and some MLAs, are you not so delighted, you know? And I'm like, no, because this is non-binding, this doesn't mean anything. This was just you all in there having the time of your life, and actually, the reality is the issues talked about in there are the ones that you know matter to your constituents, and I know matter to families, but everything else that we have in place in terms of our strategy doesn't address any of that, right? So I am more angry than ever. I'm sure they weren't expecting that, on to they weren't. Yeah, yeah. And I don't really like, I mean, I I think if we're not doing well, we have to be really clear and accept that, and that's supposed not to dumb down the the positives, but pockets of positivity are are not enough. Yeah. Um and you you mentioned there about crisis, um, and everything you said I would agree with. Except when what I see now is we allow crisis to happen, and we we might be really good at doing something when it does come along, but we should not be allowed to be. Why are we waiting until it gets we push people into crisis, we drive people into mental health services, we drive people out of jobs, we don't plan well enough ahead, uh, and we respond only to crisis. The respite piece, for example, around short breaks and respite and the funding for that, there was a response to a crisis. Yeah, and that was something we should have seen coming. For sure. Um but when we talk about crisis as a concept in Northern Ireland, behind each of that is families, families, individuals, young people who get broken and damaged and hurt. Yeah. Um, and I think I'd said to you before that um, and I mean I I I've said this a few times, is we need to think of this, particularly within education, harm is being caused to our autistic children, young people, adults, older people. There really is real harm, and that can be difficult for people to hear because very rarely do people set out to cause harm, but the absence of empathy and understanding is enough to cause real harm. And I suppose my my concern and my worry, and why I don't really sleep very much, is around every day that passes I know something bad is happening. Right, I hear that. Um I mean, even if you think about school, it's the first when you go through those school gates as a young child, that's your first step into the real world, and you're brand new. I mean, I'm mid-40s now, yeah. I'm still learning every day, but when you're four years old, you've only been around for four years. And it's that early stuff.

SPEAKER_00 34:51

Like I was speaking at an earlier's conference, and that's why I was so passionate about it because I was like, you guys are the starting base of this. If you get this right, like the trajectory for that kid's life of like even just a confidence of like I'm being understood, I'm seen, and for the family, like for you as a parent, absolutely like that you're met by a staff member who's like, um, we realize there's some differing needs here. Like, I'd love to have a chat about how we could best support or change up some things to make sure we are really doing our best, rather than being like, here by the way, they can't do this, this, and this. Yeah, and that's such a different language, isn't it? And I think you're right. I love that idea of like, let's stop waiting for crisis, like let's let's go back and do something with this. And I think we could like, I mean, lifetime, couldn't we? Or just and like we will, and I think this is a forever conversation, absolutely, and hopefully kind of partnership within that. Um, I guess the hope bit I'd love to try and draw on of like parents and carers listening, professionals. Is there anything you feel like you could encourage or to encourage them in in action that is happening, or just an encouragement piece to yeah?

SPEAKER_01 35:53

I think the hope piece is difficult for me because I suppose over the last number of months I've had really difficult conversations where people are saying we've pretty much lost hope. Yeah, um, and that's probably that's just devastating you know to hear and really, really upsetting. Um, but what we need to give people hope. Um, it it's really critical to so much of our functioning and well-being and being able to get out simply out of bed every day. But one of the things I think that is definitely changing is um this is on the agenda, this is in the conversation. We see the the people who come to Stormont, the parents, the advocates, the activists who have voices, um, and our MLAs are listening. Um now, what I will say is I'm here, I am listening to, yeah, and I want autistic people to be able to start to speak up in their own way, whatever way they need to, to say, this is what I want, this is my life, my experience. Um, I'm one I am only one person in a massive muddle of all of this, but but I am listening. Yeah, um so just speak up, speak out, uh, and and don't stop. I mean there'll be bad days and good days, but if you can just pick yourself up and keep fighting. Yeah, yeah. Um for me, my personal journey in terms of hope, we had a massive fight, I burnt out, I had a chronic health crisis. Um, but I look now at I see my son who's healing and beginning to thrive. Um, so there always is hope. And I know for parents at the start of the journey it can seem like there's not, but just hang on to that with all you can.

SPEAKER_00 37:27

You know, I appreciate that. Emma, thank you so much just for your time and for your honesty in this. I think even I hope even people listening will feel encouraged with the fact that you're open for the conversation. I think that's such a beautiful place to start, and I can see that I've heard that from the minute that we met of you're like, I'm here, I'm like absorbing all of this, I want to hear autistic voices at the front, all of that as well, and families too. So I'm hoping even in like a few years' time we'll look back or listen to this and be like, oh my goodness, we have to talk about that. Embarrassing.

SPEAKER_01 37:58

Embarrassing that we still weren't in that position. I do cringe at some of the things I have to say, and I mean some of the things that I have just really accepted as so here. Yeah. When I say them to some people, it's like a light bulb moment, and you're like, why are we still way here?

SPEAKER_00 38:12

And yeah, like, isn't that exciting in terms of like I guess change starting to happen with that? But yeah, I I think even just having that real honest conversation and hopefully moving forward into really like positive spaces and places. But thank you so much, Eva, for your time. Very well, thank you. Thanks so much.