Holly shares her experiences of care and support. One thing that struck me listening was how people like Holly have spent their whole lives trying to behave in ways that are counter-intuitive in order to fit - wanting to just be their neurodiverse selves. Once in the 'system' its approach is to fix the problem by teaching you how to behave in neurotypical ways, rather than supporting people to accept who they are, and allow them to be free to express who they are.

first of all, can I get you to introduce yourself and tell me a little bit about yourself? Um, yes. So my name's Holly and I'm 37. I've been a support worker for adults with autism for about 15 years in different, um, different services in different settings. And only I've struggled with my mental health on and off and on for some time, and only in the last year and a bit found out

I'm like the autistic, and then I've gone through that and been diagnosed. Um, and I'm on the waiting list for a D h d as well. Um, thank you

Tell me a little bit. About what? So if you know what you like doing, where do you live? What's important to you? Um, I live in Fort Pamphlet in knowledge, which I say that because I really like that. There's a sense of community around here

Um, it's we're in a we're in a city, but we're just outside. So I'm surrounded by loads of nature, um, and loads of green spaces, which I think is important to me. Um, and I love going out for walks with my dog and just roaming around, and I really like craft and I'll have a go at crafting anything

Sounds really interesting. I love a bit of craft to if you can get around it, I'm on it. Lovely have

And it gets in places that you just wouldn't imagine it would get into. Yeah, Yeah. Thank you for sharing that about yourself

So could you tell me about your experience of receiving care and support in Norfolk? Um, and what's your experience? Been kind of kind of trying to get the support you need. Um, to be honest, it's been pretty much non existent. Up until the last little while

I found, like, the doctors once I was on the waiting list for autism A d h d. Anything I've sort of approached and whether it's like, Oh, well, wait until you're diagnosed like the nothing will sort of you, um, in any um, yeah, so that's been difficult. And we've had a meet up group started, um, six or seven months ago, so that's once a month

But even that they've been really it's been put together by Sorry, my dogs there. And he keeps moving the laptop, but they've been quite each because it's done by, like an umbrella group of people. Each one have said their hands off and nothing sort of really happened

I feel like that's really negative. I've said all bad things and I can't think of something good. I'm sure there is, but that's your experience

So how is it how what impact has that had on you? How does it make you feel? You know, lost, I think is the, uh, really lost. And for a while I was quite focused on Well, if I get a diagnosis because that's what everyone seems to say, Oh, well, if you get that will know what to do and then you get it. And it's like, Oh, well, absolutely nothing has changed

Yeah. And you think, Well, I don't really know where, where to go or what what to do. And that has an impact on your well being and your mental health

And definitely, I mean, the isolation of it. And I don't mean that so much as I mean, I'm around people all the time, but the isolation of not knowing hey wasn't going on and through the whole thing. I was I was I was I'd like to say I was so sure I had it, but I was 99% so sure I had it

And 1% sure. Like I'm a lunatic who has just read all these books and gone. Yeah, Yeah, I do that that when it wasn't true

Like and not having anything to sort of guide you and say At least put your mind to ease over that waiting time. And I'm lucky my waiting time was relatively short in a year. But, I mean, it's four years for the a d h d one

So once that was finished, I was a bit like, Well, I can't. I'm still no better off because they'll say, Oh, you're still waiting for that one. We'll see then

And just nothing. Mid road sounds really, really how hopeless it like. How do you How do you continue? You know, how have you got through? What's what? You know

How are you here today? How you kind of getting through? I'm lucky. Let my boyfriend and my sister, who I lived with, both of them, uh, were incredibly reasonable. If I've had I've been off work for just over a year I changed jobs

Um, just after lockdown, I worked all three lockdown, Got to the end of lockdown, hated where I was. I went to a new job and it was just chaos. And I had struggled with my mental health

And then I ended up off for over a year, and they they were trying to be supportive, especially because, like, so that it's an autism, not just autism, but a complex needs service. So they were trying to be helpful, But I didn't know enough about what I needed or what it was to pinpoint. Um, and I just said I was so far off coming back

It's not fair to keep dragging it on with them. So I haven't worked for over a year and a bit, and obviously I'm not entitled to anything because I've got no diagnosis or because my partner and my sister both work. But they don't understand what that's like for your self worth when I mean I'm not

I'm I was gonna say I'm not, uh I'm tight. Basically, I would say is, I don't like wasting money on things. I've never been a frivolous person, you know

So it takes a lot for me to spend money like I've hard earned but to spend money that is somebody else's. But like, I need to do that to function. So then you can't do anything that you actually need to do for your well being or to make your life worth living because you can't afford to

So it's just too stuck, really stuck. And I'm so like, Sorry to hear that. And these stories are so important because we're trying to help people and systems get unstuck

Um, what could be done differently? It's like if you, you know, has magic ones, What would you want? That system of service to feel and look like for you? Um, I think, yeah, it should be quite community led. Like I know employing employment's a lot of issues for a lot of people, but creating from the ground up something that already encourages employment to people with diverse issues. Um and, uh, see, it's so difficult because it's got to be so many different things for so many people

Like, I I try and ask regularly. You know what is if you have to say, one of the biggest thing, what is it. And there's not a common friends, like apart from community and connection

And I think a lot of the stuff further up or the a lot of the knock on problems are something that if you've got a community or a friend or, you know, a support system around that has a knock on effect of improvement everywhere, doesn't it? It does. And so I'm wondering about look, either pay. So when people you need support, like what do you want? Those people that are trying to help you find that support that system, to feel like to look like and to operate? How would you say, Are there things that I think the most important thing is that they understand and to understand? I'm not saying that you can't understand if if you're if you're not, but there's a smaller chunk of people that understand it that haven't got a condition or of of some kind, you know, or I think it's what, like it's important for all their knowledge to be up to date because there's nothing worse than you go to see some professional

And then they say something, you know, isn't it is wrong and you're like we are meant to be guided me. And if you can't even be up to date with it especially like some of the services still called Asperger's. And I think, Well, if you can update your name, then I'm not going to trust that you're going to be able to support me because you'll probably say, Oh, you're not a boy because it's all outdated

And we've had such a boost of information and understanding in the in the well I found in the last few years is your, you know, reading different books that you have to be moving with it and updating constantly. And how much of your experience do you feel that people have listened to, you know, to be honest after that meeting, I mean, I thought I did well to hold it in because I was absolutely raging through the whole thing because they're me up started 67 months ago. I didn't know about the first one because they don't advertise it anywhere anyway

Um, so from their first the second meeting, which was the first one I attended, I came home and emailed them like Hang on a minute like I love what you're doing. But there needs to be a bit structure here. Like, can you do a quiet area and, you know, separate it up and did it? Have you thought about all these things? I was like, Can you ask for suggestions when people come in and sign in? Could you just say What are you hoping to get from here? Even if you had a couple of I was like just say we're constantly getting some sort of gauge

I was like, If you want to move forward with them, we need to see what areas You know, what it is people want and create that. And then more comes from that. And obviously, like I say, they all said, Well, we're hands off, We're hands off

And I've asked it again to various ought to all of them basically, and they're like, Oh, yeah, yeah, we'll talk about that and do it. So after that meeting, I was like, Are you telling me like this didn't come out of thin air and and the other project I don't know if you were there for the first half of the meeting. Now there's a similar similar but completely different finding about support and that's been on the agenda

But two or three months and I think so. You already have had a rough idea that this is what we're going to be looking into. And you have a median saying about how we are important and you want to hear our voices to get it going from the ground up

And I think you can really ignored anything I've said. And I've like, said there are people at the meet up that would happily take on that role and would benefit from it. If they're a bit shy, they can talk to people for their benefit

And that overcomes their shyness, if that makes sense. Um, yeah, and they were like, Oh, yeah, sorry about that. It's like and I think as well they've all they already know the information like there

Oh, yeah, I don't know. I just don't like it. I just I like transparency, you know, but But it's really interesting that so we started off with you sharing your experience, and it feels like a really frustrating process to be in

If you're saying that these are your experiences, but no one's responding and listening. And and then, like I say, after six months, say, what's your experiences? And I'm like, I've been asking you to ask people, but yeah. Sorry

Interrupted. No, it's fine. And this is really important

So this work that we're doing is looking at, you know, the local offer what needs to be in place. And they started off calling it a ethical commissioning. Ethical commissioning, big jargon, bird framework around commissioning

So what are the values that local authorities health all of the kind of systems that would support someone like you need to have if they're going to get it right? Sorry. Let me. Sorry

That was a bit worthy. So what kind of values would make a difference? So, like, you're talking about not listening, So is are the values that could we could share with people to get it right for people. Do you mean what do the what the service needs? I do like so, Yeah

So what would like so a value to me? So some think that and I'll use an example might be easier for me to having a bit of brain fog. Say so do forgive me. How so they exploring what ethical commission looked like

And so what? The values that sit behind the local offer. And for me, one of those values, clearly what you're saying would have to be listened to people and I want to share with me. What other values do you think again? I think transparency

I think if everyone is clear, if if it's if it's clear it's out there and then it's a conversation and it gets people talking like Uh huh, Sorry, I'm having a bad brain day as well, but, um, yeah, just being honest and I open, Yeah, again talk, listening to people and not telling them then how they feel or telling. Yeah, listening, not telling First stop. And I think taking time with people you can't just rush people through, especially if people get a little bit muddled, like I know if it happens quickly, I get home and I realised I didn't say the thing that I went there for like and I know that other people have the same issue that if the other person starts talking and detract sit, then the focus is gone, and then I just have a lovely chat and leave, and it's not

It doesn't end up as being productive as I needed to be. Because if it's not productive, then it was a waste of everyone's time. Absolutely

And would you say one of the ways that we could get there to do that is really getting to know you and asking Have does anybody has anyone asked you what you actually need to feel? Nobody, Not once. And and I even said like when I first started email and like this is for me, I need to know like, Why is this being developed? Is there are needs that it's trying to me or does like, I need to understand it, to know what the point of it is or I can't engage in it, but like, it's worse. Just I'm sorry

I've totally subtract. What was the question? It was about asking you what you need to contribute in these forums. Yeah, yeah, No, nobody's nobody's asked

I've been given really bad book recommendations like, um, it was the post diagnostic pack. Not like I got one. I I found it

Officer was given it off Somebody else. It's like books that may help you dog in the night guard, and I just think anyone who's even put this on a form need to tell it. And you're trying to help me like you're not understanding or like I m doing a living well with autism course, uh, which was really good and really terrible all in one

It was good because it was you got to meet other people and listen to their experiences. But any input of anybody of the actual cause, we basically all just argued with for most of it, or they're explaining stuff to you. Look, I think there's obviously there's a million different types of people, but there's a chunk of people law, autistic and have no interest in it

And there's a chunk of people. Autism is a special interest, and I'm one of those, and that seems a large chunk of people. So then you get people trying to teach you Yeah, pointless things, rather than listening to what you're actually saying, which is where is the support? What do you know? How do I get there rather than just have you thought about or, you know, and especially when some of it was like ways that you can, um, be more neuro typical

And I was like, Whoa, I've been asking for 57 years. I want to know how to not do this. Not how to push me back in there

Like, is this really advice that you've given to us? Any point there alone now, when we are knowing so much more. I'm so shocked that you just said that That's the advice that I gave you. Um, yeah

No. Well, the thing is, it's quite a new is developed by autistic people. I do this because I don't know how much I believe in that, but And the trainers were autistic, two of them, and like and it was being adapted after every session on people's feedbacks

So I think it was like the third time it had run. So I think there was still a lot of adjustments being made, but they were not not I wouldn't say anywhere near it on on the third one through, and that worries me. How many people go to that desperate and then get that information like, luckily, there was enough people on the course to go

No, no, no, no, no. Look, I think that would have helped another person. But if you're already thinking in that mindset, that that's what I need to do

And then somebody with autism tells you that I don't like it, I don't know the message. Yeah, that sounds really like a difficult space. So you said to me that for getting a diagnosis difficult, getting the support difficult

Then when you find, expect itself in spaces where they should be supportive not being heard difficult, because it's not really clear. Do you have an idea of, like, what kind of support would make a difference? Do you know what would help you? And I know you've talked about unemployment and feel like you've been a bit of a Catch 22 aren't you? Yeah. Yeah, I think the most important

If there was a place either online and or real worlds that, uh ideally both here. I mean, that is the place that you go to, and from there you it can branch into different supports. But the main thing about everyone connecting in one place and I think the more you can build a community or think about it's all What? What service can we put in place for you when really, I think it should be a bit more wrong round about a bit more what the community can do for itself and be and more self fulfilling

And I'm not saying obviously let only have narrow, diverse staff or or anything like that, but just having enough people there. But anyway, like even in the, um for him this week I found out about another meet up place in the area, and I've been obsessively searching and did it for for a year and a bit, and I've never heard about that one. And it's all you have to email this person, too, And it's all all so complex when really, if you imagine six out of seven people in a city, that's that's a big community

But none of us know each other exist. And I think if there was a predominant place that encompassed everything, you build that sense of community and connection. Yeah, and let you be reassured that when you do go there, let the information is up to date and positive, you know, without telling you

Oh, isn't it lovely when it's not but still in positive encouragement and I think seeing people at different levels and work in and having different things to aspire to. I walked out one cracked on it. We're gonna can't know this

These go where they need to go. So really important about the role. If I've feel like what I've heard that actually pierce a couple people that live and be that being the experts in it, um, not relying on formalised support

Actually, this is about us as being these and being able to support each other. But maybe some structure and support around that and then I've heard about, you know, sort of being really open, transparent, clear. How do you want people to treat you when you need support? What kind of behaviours would you want to see? Um, I think one of the first things that you should do another thing I wanted to suggested for the meat up is to it too

Create. There's so many different variables, but to have a blanket sheet of paper that says clear, this is my preferred means of communication Didn't even if it's things about me, I like that you might want to talk about, uh if things are going wrong please do this. Um, if I behave like this, just ignore it or, you know everyone's thing is going to be completely different

But just some way you can just give that. And I think that takes the pressure off. Having to behave look, is what's so exhausting about being with neuro typical and it's just really stressful

And it's like, Counterintuitive, isn't it? It's like, Yeah, you're Yeah, I think so. I don't want to be self deprecating, and I don't want to do all these things, but that's the easiest way to explain yourself sometimes is to finish it off, and then I get home. And I think, Oh, I don't like that I've done that like whereas if you can say, if you handed that off and I'm not saying you need to hand it to every person

But I just think, especially with services or people you're going to see regularly, it's nice, just a and and it's straight away. Told you who I am, doesn't it? Like, uh, because people will start, companies will start ringing, you know. No, no, no, like, I will never answer that phone

This is a complete waste of everyone's time, but getting that clear from the get go If you want me email me or did it? Did A. If you haven't heard from me, I was talking to a another local community group about maybe going and doing like an add on. Meet up with them

So there was someone they could talk to and sort of signpost or support them to go in the medium to join the other group. Like if they needed more support or a bit of a choir area, whatever they need, sort of thing. And she said she was then talking about Well, if if we don't someone doesn't come for a few weeks, we'll give them a call

And I was like, I straight away. I don't like that. Like, I think that should be one of the first things you asked him

Like if I'm you know, a what to be concerned about. And if you see that, what? How to react for it like, don't start ringing me because that would make it worse. So, yeah, I think just getting them clear, clear key bits of information that are going to make a big difference to you moving forward Yeah, absolutely

What are your hopes for the future? So, what do you hope your future looks like? What do you want to be different? Um, I'd like it. I'd like everyone's understanding to move forward a chunk. Like the changes happened so slowly that someone will say to me, I just done an autism course and headed over there, and I'm like, No, no, no

And I think that's the way they just blanket that out. And it goes another further, and it keeps people away from understanding. Um, so, yeah, I'd like I'd like to generally see that happen

Um, I think I'd like I'd like my life not to be such a mess, But I try and think at the moment. It's just a process, and maybe I don't know, Um and at some point, things will start to improve again. Like I know I'm capable

But I rely on having a good brain day, and that used to be quite often. And now I feel like I'm very It's a very rare occasion that I get a day when I can I can function properly. Um, so I definitely like to have more functional days

Um and I really would like to do something community based or or peer support. Like, say, I've been thinking about the meet ups and trying to improve them, but I don't know how I feel about that now, after after this week. But anyway, um, yeah, I just love people to have somewhere to connect, like the difference in people when they come to me up and sit down and have a little chat with somebody, and then you leave like you can just tell, you know, And I've had people like feedback afterwards, you know, Or people dread going

And at the end of like, Oh, I'm so glad I came in and and that little lift, you know, a little one of them often would change the world from it. Uh, that's really important here. So we definitely feed all of this back, and hopefully you'll come to some of the workshops and spaces

Is there anything you else you wanted to share with us about your experiences? No, I loved it too big a question. I think we can come back and have a chat another time. And I'm definitely not for going to the workshops and stuff anyway

And hopefully more stuff all. And if by any You know, if you want to email me, email me and Kat if stuff comes up and you want to share more staff will be led by you. But we've got so much already

So thank you for taking time to talk to us. Very welcome. I love it

Good sense of like needing to be accessible. I don't know if you had a one page profiles. Have you had a one page profiles? Yeah, I have

And I know. Yeah, that's the same sort of thing. Be like that

Seems a weird thing. I don't know. I don't know how to tell me

Tell me like it just seems a weird like I'd have to make my own. And it just seems like a weird thing. Whereas if something, if there's a standard anything yeah, or or the fact that you feel like you do them and no one cares anyway

Like, who would read, uh, like, Yeah, I don't know who I believe it would read it anyway. And I think because you see, like once you do your service or, like, say your doctors and that you see a different one every time anyway. So I don't know how that works

Or do you do it every time anyway. But that that thing around, having consistency clearly is important to you. And can I ask you about? So in terms of being involved in stuff like, how much co production have you done to have you done lots of co production locally? Do you know what it is? No

Okay. All right. So you'll be a What was the co production is a concept, a concept of where services, commissioners, GPS or people services and people that might be accessed them come together to really design and what their services feeling look like

And already you start talking about from your perspective, they need to be, like, consistent. They need to understand you not make assumptions, listen and respond. Be kind and compassionate

And that although you do have some challenges like you are able to do stuff for yourself and very much, it's about the community. Not all about services. Yeah, And again I can say about people, uh, things I can't do for myself

I can if if a friend is struggling with it, I can do it for them. Like you can buff it all out. And there's so, like, that is a common theme amongst people

And I think that gives you a sense of purpose and and point to it Or doesn't it? He does. And that sense of purpose being so important for me and thank you for reminding us about that sense of purpose. So have you got all the dates for our meetings and stuff? She put them in an email to you? Yeah

Please. Do you have any questions for me? Well, I don't think so. Uh, when you Yeah

I don't know. No, I don't think so. Let me know

Just interested. And look forward to see where it goes. Brilliant

And you've got the consent from if you could completely consent. Form that And I will drop your name of all the dates. Thank you for sharing your story

Lovely. Thanks so much. Take care


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