S3 Episode 7 - Full Circle

Of the late discovered club. the podcast that Like just got the. Helping to deconstruct stereotypes and give the next generation. We would love to watch the colour. Throughout season three, and we've created a home for you, our own mighty online community space, so that not only can you support And a big shout out to the biggest. Thank you to everyone who's It all helps.

So welcome to the podcast, Lauren. Uh we originally connected, didn't we, through T C back in season one because you were part of T C's Two Autistic for Black short documentary. And now you're also a trainer on the NHS National Autism Trainer Programme. So we've had the opportunity to work together. Where you very vulnerably and openly share your experiences of being a black autistic woman and your experiences of adult inpatient care and treatment.

And not only are you a trainer, you're a speaker, you're a mum.

yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw'n yw Rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd

ac yn ymwneud â phobl, ac yn ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl sy'n ymwneud â phobl.

And as an adult. And that's really where I want to start today is with your late discovery and your late diagnosis. When did that, when did that journey begin for you in discovering and getting that diagnosis, Lauren, that you're autistic? So thank you for having me. 감사합니다. Right. So the discovery started way before getting the diagnosis.

try various things, speaking to my school, speaking to the local education board, um, because I was just really under stimulated at school. Um, my intelligence was miles ahead and I was just coming home and saying, I'm bored, I'm bored, I wanted to do more. So for my mum, that meant that.

Mae'r pethau sydd wedi'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i So that was always a part of it that really kind of disrupted everything for us. And that just continued to progress, to progressively get worse. throughout my school life, but I didn't actually get a diagnosis until I was 26.

And the reason for that is because my younger sister came home after years of battling with mental health or misdiagnosis. Whatever that is, that's what's going on with me. So I am going to explore that for myself. Um and I did. I went and spoke to my GP, I got referred and I was diagnosed as autistic. And following my diagnosis, the consultant said, Oh, I think you've got strong indication of ADHD as well.

And for me, I said, no, there's no way. There's no way I've got ADHD because at that point I was living with this stereotype in my head of what ADHD looks like. And as far as I was concerned, I didn't manifest any of that. But then I went through with the diagnosis and I came back unremarkably ADHD um combined type. So yeah, I I received my autism and ADHD diagnoses in at the age of twenty six.

So that's a long time, isn't it? 26 years to be living with not knowing this difference in yourself. And you touched on there about being understimulated. and being bored at school and Nobody really picking that up. And I we often talk, don't we, and we hear about overstimulation and being overstimulated. Ond ymwneudoddiwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwydwyd

Because it you you need it, don't you? You need that as you're going through um school. And what happened then for you, Lauren, not having that level of stimulation? What happened in terms of your education? How do you think it how do you think it impacted your education growing up?

Well, that lack of stimulation, that lack of support, it failed me, honestly. Um, I could have been somebody that went on to graduate with doctorates and you know, I could have been very successful educationally. However, because I wasn't supported and that wasn't identified early on, I I I slipped away. I started to seek that stimulation elsewhere, um, in comparison to my education and reading books and and educating myself. Um

I wasn't yeah, I w I just didn't have that stimulation. I didn't have that hunger for it anymore. So uh a a prime thing that I did was I started to work and that became my special interest, if you like, my hyper focus and it has been since I could work. As long as I as long as I could work, I have always been working. to the as much as I can until there's nothing left, literally. And then I'd get up the next day and do it again. Um so yeah, unfortunately

my education failed in that sense. I was predicted straight A stars. Um, I think ten of them, and I got one A star. Um, so I didn't do well at all. I then went on to sixth form because I had this idea that I wanted to be a forensic psychologist, but science was never my strong point. So I didn't manage to get the grades that I wanted to do that I needed.

to be able to do forensic psychology. So I changed and then I went into sixth form trying, I think, maths because I was good at it naturally and I I don't even remember what else I did, but what I do know is that I didn't complete sixth form. Then I moved on to college. So that's where my ADHD started. Rydyn ni'n gwneud rhywbeth. Rydyn ni'n gwneud rhywbeth. Rydyn ni'n gwneud rhywbeth. Rydyn ni'n gwneud rhywbeth

Then I moved on to college and I had an accident. So I had to have an operation, which meant I couldn't stand on my feet. Um I was doing a hairdressing course at the time and that for them that was a health and safety issue. Um, so then I moved on to another course without finishing that one. That one I managed to complete and then I said, right, I'm good at this, I've done well, I've actually completed it, I'll go to uni and do this.

and I didn't complete uni. Um I did seek support at uni. So this is before my diagnoses because the difference in my focus and my ability It completely changed as soon as I got to university and I was struggling with um what I now know is Mears Erling syndrome. So when I was younger I would see spots and pigments moving and it would really it was like a distortion, it would really bother me and make me feel sick and

Nobody believed that I was experiencing this and me viciously rubbing my eyes, people would tell me to stop and not actually dig deeper into that. But when I went to uni, it got worse. So I did actually go through for, I think, a dyslexia assessment, which I knew I wasn't dyslexic because I hadn't struggled in any other way before. Um but they then gave me that diagnosis and they Um, they there was not much support that they could give me because of course there was

I would like to call it underlying autism, but I don't really think it's something that's underlying. But autism was present. that wasn't diagnosed at the time. So therefore any help that I could get was only for that specific issue. It wasn't for my whole self. Does that make sense?

So there's all these touch points, isn't there, already in your story, in in your experiences, at specific points. lle rydych chi wedi'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i' And how that's impacted your potential. You know, you're you you said there I I

I could be somebody. I could have done this and the struggles that you had and not being supported. So In those interactions then with professionals, you get to this point where you you recognize that's in yourself from seeing your sister that you're autistic and you go and approach your GP. At that point, Lauren, where did you feel seen? Did you feel heard? Did you feel understood when you went to see your GP? At that point I didn't feel seen.

I felt empowered because I had the knowledge that my sister has just been diagnosed. And I shared a lot of similarities with her. And as far as I was concerned, because of that mistrust and the misdiagnoses that I'd received and just not being identified earlier on, I went in with the mentality that You're going to refer me for an assessment. It wasn't a question that I was asking because previously.

asking and just trusting in the doctors didn't work for me. And so that was how I geared myself up, said, right, you need an assessment. I need an assessment. I went to the doctor. I need an assessment because my sister has just been diagnosed and we share a lot of traits. I share a lot of similar similarities with her. Um so no, I didn't feel heard and seen at that time, but I made sure that I was going to be heard at that point. Being seen

It's interesting because I don't think that was something I wasn't aware of being unseen at that point. It's only now in hindsight that I look back and I say, wow, I was unseen. And that A tagline that you'll see that I've used a lot across my social media is the invisible black girl because I'm obviously not invisible, but I've been unseen for so long.

And what what changed for you then getting, once you got that diagnosis, what what did change for you? How how did that how was that received by People around you, people within your community, people who you care about. How was that received? And how did you receive that?

So I was obviously prepared to receive it. So for me, it was really enlightening, it was really empowering. And that would only improve, that would only progress over time. But I just remember having this. booklet in my hand, if you like, my diagnosis paper, and just thinking, well, this is me here. This is what the doctor said based on what I information I've given them. And this makes sense as to why I am the way I am. Moving on from that, I wanted

more support to be able to better receive this diagnosis. So I wanted to meet more people that looked like me, more people that had the same experiences as me, whether they were black, white, it didn't matter. I just needed to understand. Why I felt like such an alien my whole life. And if there were people that I could share that feeling with.

So I kind of I asked for therapy, which I was advised there's basically there's no help once you're an adult. There's nothing, there's no services available. Um they were able to put me onto a social group. which I didn't fit in. I was the only female. I was the only black person there. Um, the only person who wasn't a prolific gamer.

So I was sat there and we were being explain we were having traits, common traits and um things explained to us and the rest of the group were able to identify with those and I really wasn't. The I think the next stage for me was my obviously my immediate family knew because my sister had not long been diagnosed. We have a younger brother who had been diagnosed at a young age. So my immediate family knew, but then I started to tell

my wider family, but not that far out. And I just remember being told, you know, don't don't worry about the labels. The labels don't matter. You you're just who you are. And me thinking, well, no, actually. This does does matter to me. And this yes, I am who I am, but this actually helps me to understand who I am.

So how can you understand who I am and how can you tell me who I am without acknowledging this label? So now I feel We often hear that th though, don't we, from people that I think people sometimes think that they are saying the right thing by saying, oh, you're more than your label or you know, you don't need to identify with this label, you're more than autism, you're more than being autistic.

But who is anybody else to decide how you identify? It's like saying, Lauren, you shouldn't identify as a um as a mother, you know, you shouldn't give yourself that label as a mother. You're more than a mother.

Rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd Mae'n iawn iawn i'w hynny'n mynd i'w hynny'n mynd i'w hynny'n mynd i'w hynny'n mynd i'w hynny'n mynd i'w hynny'n mynd.

Again, you've gone through this, you've had this discovery about yourself, and people are telling you that you shouldn't apply this stigmatizing label to yourself, Lauren. You're more than your label.

Rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd. I couldn't agree with you more.

I felt shut down again. I felt like I'd been misunderstood my whole life by everybody around me. My family loved me and they had loved me up until this point. And then I just felt like, well, if you're not going to respect that information that I'm giving you, it obviously means something to me, then

I'm not quite sure what to do. And then I distance myself. Um and then my friends were next. But I haven't actually said I'm autistic to anybody that I was ymwneud â'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn o'r hyn oherwydd to say I'm autistic and that's why

I behave like this sometimes or that's why I do that or that's why you won't see me for ages and then I'll pop up with a world full of energy. I just didn't have that safety in my friendship circles or in my circles. So

Uh I I did feel safe to say I'm going through something, I've just, you know, I've been diagnosed with something and I'm processing that and understanding what that means for me. But as much as I didn't identify and say what that was, I wasn't probed, nobody asked, nobody checked in. So it just became normal for me to not say anything and just to distance myself from the previous Lauren and also from all of those attachments that that Lauren had.

So really not being seen in your world. So you've got this diagnosis, but Rydyn ni'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd i'n mynd

you've found some kind of social or support group or something like that. And you hear that narrative from mental health professionals, you know, you're more than your label, you're more than this, you're more than how you identify. That creates an unsafe environment then, where not only is it not safe in my community or within my social, personal social circle.

I then discover support or I'm referred to a therapist or whatever and I'm also not seen in that space and it's not safe for me to to to be in that space. I'm going to ask you this question, and I know it's a question that you, that TC really focused on her short documentary, didn't she, To Autistic for Black, which you were involved in. But what does being black, autistic and late discovered, late diagnosed mean to you, Lauren?

Simply, it means all of those things. It means that I'm a black woman. I am autistic. And that's something that's prevalent in my everyday that I was diagnosed later on in life because that latter part, what that means is I had to find a way to cope. until I was diagnosed and even past diagnosis, but what we know is masking and camouflaging to fit in, that became my norm because I was bullied in s in school. So I didn't

I wanted to move myself as far away from that as possible. And I didn't know what it was about me, but I knew that. by acting like other people or by being interested in similar things to this group of people, that I would find friendship in that. Um so I think being the black part, that's the part for me that's Of course, very special, but That's the only part that people see.

So people only see that I'm black. They don't see anything else. You can't see that I'm disabled. You can't see that I've I'm autistic. I just don't feel received. So it's not much It's not many situations that I'll comfortably say I'm autistic, because usually what that's met with is disbelief, laughter.

well you must be um high functioning or ah you're not artistic those kind of um diminishing comments and it just it really attacks my identity and it really attacks who I am and then For me as an autistic person, I tend to go home and decompress every single day from interacting with society, but if I've had a day where I've received comments like that, it takes me longer to process. It takes me longer um to bring myself down. from a heightened place, it takes me

longer to actually just accept that. And unfortunately I do end up accepting that this is the world and that's the way it is, not the world needs to change and people need to understand. Because I've been through these battles for so long and it in s literally in every aspect of my life. Yeah. So it's literally in every aspect of life. It could be food shopping. It could be accessing healthcare. So accessing my GP, accessing my dentist.

Um, it could be friendships and relationships, every part work. It could be work. every part of life is A process for me, and it's something that although I seem to do it well, and I seem maybe to do it seamlessly, it's not seamless. And I used to compare myself to a goose. Um just gliding along the water, looking, you know, peaceful and calm. And then underwater you've got this frantic

Peddling and paddling just to stay afloat. And that's what it feels like for me to be a black, autistic, late-diagnosed woman. Yeah, thank you for thank you for for explaining that and giving, you know, such a descriptive answer there and wha the struggles then that you I mean you've touched on so many of those already. Rydyn ni'n ymwneud â'r pethau ymwneud â'r pethau ymwneud â'r pethau ymwneud â'r pethau?

saying that I'm I'm autistic as saying, well, you don't look autistic or you do this or you're you know, you must have a high functioning type or and all of these kinds of things that you're hearing. People don't see your struggles. So what what are some of the struggles that you have and do struggle with in your life as an autistic woman?

I'd say the main thing that I struggle with It's I think particularly since becoming a mother as well, there's some things have become a lot harder and I uh joked and said my autism has become worse. Like it's it's harder for me to deal with. Um But I think my executive dysfunctioning has become so much worse. So it takes a lot for me to

get out of bed and go about my day, whatever that means, if that means my baby needs to get up and eat, I still struggle with that. Um I still struggle to process being woken up, having that lack of sleep. all of these things that all mothers and parents will struggle with, but I am struggling internally with that because I'm also blaming myself. I'm I'm feeling bad about it. I'm feeling like

you're not a good mother and I often have to have these conversations with my mum and just say, Did did you experience this and did you have it like that? And why don't I feel like this? It's just very difficult to do every day. Every day is difficult in itself. And I know that's a very broad thing to say, but that is genuinely my my biggest struggle. Um I struggle a lot socially, but people don't.

accept that from me. They think I'm very outgoing, which I can be, but again, that's the persona and that's me masking because in order for me to go out and socialise and be outside, I have to have these Serious pet talks with myself. It could be that if I haven't gone out for a long time, but if I were going out, Sometimes I throw up before I go out just randomly because the nerves and everything going on my body is too much stress. Um

I procrastinate a lot, for example, and that's not because I want to or because I'm taking my time. It just takes me a lot to go through the physical actions, for example, I put my makeup on, do my hair, whilst mentally preparing myself for everything to go out, which is like Okay, if worst case happens and I need to escape.

Where are the where are the exits? How will I get out? Who will I tell? Will I tell anybody? Will I just go? How close can I park to that place? And it's just this constant noise in my head. And it's it's distracting, it's time consuming, it's it's just really exhausting to have to have these. miniature conversations about every single step of everything to be a to enable myself to actually get to that final point. And then people just see you turn up, for example.

And they they think, Oh, well you're a bit late and I'm like, You have no idea And it could be that I have to go straight to the toilet and then you know, it's too much. There's too many people around and I just have to go straight to the toilet and just sit there for ten minutes because whoa we Sous-titrage ST' 501 Whoa is a word that I say a lot. Yes, I think those are some of my main struggles.

And a lot of what you're talking about here are very much internal struggles, aren't they? They're not things that other people will necessarily see. And you touched on there about becoming a mum, Lauren, and motherhood. And You you went into Motherhood, presumably, with your knowing that you were autistic, knowing uh there's these additional additional challenges, aren't there, when it comes to things like sleep and feeding and um all of the hormonal changes that are happening.

yn eich bod yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu yn ysgrifennu. Knowing that you're going into motherhood, were you supported, Lauren, through your pregnancy journey by professionals who perhaps

N the short answer is no. Um the first so I spent time calling my GP because I was on certain medication because I also have fibromyalgia, which is chronic pain. Um so I was on a lot of medication that I was reading up on, I can't take whilst I'm pregnant. So I would call my GP and they were very dismissive. They were like, nope, you're pregnant. You need to contact the hospital and they'll take over from here.

Which I couldn't understand, but okay. Then I had to go and register with a hospital for my antenatal care, which took me a very long time because I had zero trust in hospitals. I'd not long been sectioned. So I was very much at the standing point of if I and this was at my local hospital, if I was literally in an ambulance dying, I would wake up and tell them, do not take me there, because I would rather not go. Um so that was a huge process for me.

And then when I did refer myself, I found a hospital that wasn't too far and I got a letter. And it said, you're you've been assigned a mental health nurse. And I thought, midwife, sorry. And I thought, why have I got a mental health midwife? I've got no mental health. So I called them up and I said, exactly that, I've got no mental health. Why have I been assigned a mental health midwife? And they said, well, it's just a standard thing because you've got an autism diagnosis.

Sorry, I'm holding a face here because I can't make the connection between being autistic and needing a mental health midwife. That's what my face is doing on this screen right now. I still can't to this point. I don't know what that did for me, apart from negative. So I thought because I'd been shaped by this recent experience of being sectioned, I was, I had become less assertive. I'm quite an assertive person, but I found that in doing that, that

that kind of contributed to me being sectioned because people took that as this angry, aggressive black woman and she's literally going crazy. Um Being pregnant, absolutely not. Um, a lot of what happened in those midwife sessions was. preparation around social services and we may need to get social services involved. And that in itself made me not leave my house. The first two trimesters of my pregnancy were stolen from me.

Because I didn't feel safe. I didn't feel like I could go outside and just be who I was. I didn't feel like, you know, if I go to a supermarket and I pull somebody up about parking in a blue bay blue badge bay, which is something that happens quite a lot for me. Um I didn't feel that I would be able to respond in those situations in a way that meant my child wasn't going to be taken away from me. So

That was really, really hard. Um I didn't even feel that I could actually say you're actually making me really anxious and the threat of social service involvement. That's making me not want to exist at this point. And I did go into this state of just floating, just existing, just being indoors, not saying anything. Untoward not speaking out. um, sticking up for myself, which is not like me at all.

as that progressed I actually got hypertension and they thought I was um They thought I had preoclampsia. which had its own effects to my actual birth situation. But no, the the short answer is there was no support for me. And I actually Googled um autistic midwife. black autistic midwife in the UK, I was just desperately trying to find anybody who could help translate what was going on in the medical system.

mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd She I just emailed her, found an email for her and I said, I'm really sorry, but I'm a black autistic woman. I'm really scared and is this normal? And she also recommended Alexis Quinn's book, Autistic and Expecting, which I bought straight away and I can't recommend that enough.

And she was just there for me to contact her. She said, Lauren, if you need anything, feel free. Here's my contact number. Here's my email address. There isn't enough being done for autistic pregnant people. So please feel free to contact me and be safe that you can. I ran away. Lauren, I really feel for you and uh you know, so sorry that you experienced that going through and your first pregnancy as well. Uh Because

Yn ymwneud â phobl yn ymwneud â phobl yn ymwneud â phobl. Mae'n ymwneud â phobl yn ymwneud â phobl. Mae'n ymwneud â phobl ac ymwneud â phobl ac ymwneud â phobl ac ymwneud â phobl ac ymwneud â phobl ac ymwneud â phobl ac ymwneud â phobl. to be as low as possible during pregnancy. And actually the lack of support and the lack of safety that you felt and you experienced.

did the complete opposite, didn't it? And caused anxiety and caused you to feel like you can't leave your house. And it's such Hearing you reach out to a midwife who is clearly neuro affirming in the work that that this person does. It's not rocket science at all, is it? And this is what we often talk about in the training, don't we, to in the national autism training programme to to mental health professionals, that none of this is rocket science.

It's not About creating safety and creating an environment where you feel like you're seen and you're heard and you're understood and you've got resources that are and support mechanisms that are tailored to your particular needs. And honestly I wouldn't mind it this whole

inverted commas mental health midwife, if they'd have done that work, because I don't feel like that's my job to do as much as I did it, because that's something that's normal to me now. I always look for somebody specific who is willing to assist in any way that they can. Um, but I feel like that should have been more

what my sessions were about. Okay, how can we help you as an autistic woman? It's really not that complicated. If you're not trained and you don't have an awareness or an understanding in autism and the intersectionalities that that person may bring. you can do a Google search just as I did. It doesn't make you any less of a midwife. It doesn't make you in fact, I think it actually makes you a better professional because you're acknowledging that okay, I'm not

However, I've done a bit of research and is this something that would be useful to you? Is this something that would be beneficial to you? Because it just felt like really a tick box tick box. exercise so that if I did if something did go wrong, then the NHS were covered because they'd given me this mental health midwife and she'd explained that social services may intervene. So I d really didn't gain anything out of it.

And how how has being autistic then impacted your physical and your mental health and wellbeing, Lauren? Because you've talked so far about you've the fact that you were sectioned before your pregnancy, before you became a mother, and you've talked about fibromyalgia, chronic pain, which we know is so common. We hear it in stories on this podcast we know that it's uh something that so many autistic women experience.

So many ways and I think again this is where the intersections of an individual's identity really come to play because If we talk about my fibromyalgia, for example, I was complaining of pain and loss of sensation from being a teenager. And I would literally go to the doctor with one arm not moving, say, I cannot move this arm. I've woken up. I get pins and needles, it's numb. It will be like this for half a day. And then literally disbelieving me and not acknowledging my pain.

So when we look at the care and the how much professionals believe black women and black people in pain. We know that statistically it's misjudged and it's underrepresented and um black women are likely to have more uh less pain relief, sorry, but need more pain relief. Um, so I think when it comes to autism and the intersection of the fibromyalgia, the the fact that I just have to I've had to process that pain in a different way. My body has adjusted to it and just

putting it back to the back of my mind or being able to know, okay, I'm I'm about a day away from a crisis. So let me pack everything in now because I'm not going to be able to move for at least another seven days. And it I just have no words for that because if I'm You can't see anybody's pain. The same as you can't see mental health. You can't see these things. But for some reason, it seems that other things outside of autism get a lot more acceptance and a lot more.

empathy than I feel autism does. Um so and how that presents through any other co-occurring conditions. So yeah, I mean my autism has made it I've had to find ways to cope and unfortunately those coping mechanisms have then mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd mewn gwirionedd

I haven't had, for example, a crisis since before I was pregnant, but I know now that if I had one, my first point of call wouldn't be to go to my GP because they're not going to believe me. The first thing they'd probably say is, Well, you haven't had one for a long time. But I know that um it's been reported a lot that in pregnancy fibromyalgia for some some reason seems to either

um lessen or get really bad and I was very privileged to be one of those people who didn't really well, I didn't move as well. That's Yeah, that's the other thing, isn't it? Yeah. So That's what I would say. And with regards to mental health. I think and this comes into or So going back to being a teenager and accessing things like CAMS, having being labelled as ang having anxiety and depression throughout my teenage years.

um having severe panic attacks, again finding ways to cope with those. So people didn't really believe that I was in such distress. and still don't. But going back to the interventions that they did try. such a CBT, it never worked for me. And I would say the exact same thing. I'm one of those people who has obtained m as much of my records as I possibly could. And I would always say I felt patronized.

I didn't understand why somebody was asking me why I feel that way. And that was something that I kept repeating. So it's shocking to see now with what I know that nobody actually thought, well, This isn't working for her. Why do we let her go and then come back six months later or a year later and then do the exact same thing and expect different results?

Um, so when it comes to mental health, I think so much more needs to be done with regards to can making those connections and bettering the services and making adaptations for people who are autistic. and have additional occurring mental health challenges. And that's just a standard to me. I don't understand why it's not why it isn't standard because it's su

a usual it's such a normal thing. If somebody doesn't speak English, you're not going to deliver those sessions in English, are you? You're gonna find a way to make it work because of course they can't um access that. It doesn't make sense. So the the lack of accessibility in these um interventions, in these treatments, it just it's dumbfounding to me. I don't understand. Um But yeah, being autistic is who I am.

It's my entire neurology, it's why I do things, the way that I do things, when and how I do things. So In order to be able to assist me with my mental health and my well-being, you need to first understand and address the autism and how that presents and manifests in those different avenues.

And and a simple question of being autistic, what does that mean for you? What are some of the struggles? What are the some of the things that you can tell me, Lauren, about how your world, how you experience your world?

But we don't get that, do we? We get so many assumptions and I wonder if doing the training that you're doing on the National Autism Training Programme, kind of feels like you've gone full circle that you've you've had all of this experience, all of these experiences that you're talking about with mental health professionals and now and now you're sat. In a room training those mental health professionals.

It definitely feels like a full circle. Um from being sectioned as soon as I left to discharge myself. Because I knew at every stage of the wave that what was happening to me was just not right. It wasn't lawful. It was against my human rights. It was a complete violation. And the fact that I am articulate and able to say to express myself very clearly and how that was completely ignored and as I said earlier laughed at at times. Um people would roll their eyes and just

Rydyn ni'n credu. Rydyn ni'n credu. Rydyn ni'n credu. Rydyn ni'n credu. Rydyn ni'n credu. intercepted by police and to be honest, I expected that from the police. Rydyn ni'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio'n gweithio.

To handcuff her for the first time in her life. And then not understanding that transporting me in this tiny little space to a hospital. A 136 suite, which is um the police section, to be observed through glass, like a fish, by ten people. the most absurd thing. Um, and I just didn't understand how Rydyn ni'n ymwneud â'r 136 mewn gwirionedd, sy'n ymwneud â'r profiadau, a'r profiadau, a'r profiadau, a'r profiadau, a'r profiadau, a'r profiadau, a'r profiadau, a'r profiadau.

to get anything out of me because it was the complete opposite. It was counterproductive. And I was saying this, this is not, you're not going to get whatever it is that you want out of me because you're literally treating me like an animal. Like what? Is going on here? Is this actually how you treat people? I just couldn't process, but at the same time, I was in such distress that I'm speaking faster. I'm I'm very heightened. And in hindsight, I can see how that.

Can appear to somebody who has absolutely no knowledge of autism or even mental health. Because I'm not saying that I did have mental health, but what I do expect is that people who Mental health on a daily basis. People that work with that and are trained in that should understand things like trauma, should understand things like PTSD, should understand things like Maybe there's something that I'm not fully aware of, again, like I said about midwife.

Maybe there's something here that I don't fully understand because this is what I know of autism. This person is saying they're autistic, but this doesn't make sense to me, then what can I do? Can I escalate that to somebody? Can I speak to a colleague who maybe does have an understanding of autism because this just doesn't seem right. Everything that we're doing here is escalating this person. And Surely that's not helping. And I think I went off on a tangent there.

Okay. It it makes me think though, Lauren, hearing you talk that how Rydyn ni'n gweithio'ch chi'n gweithio'ch chi'n gweithio'ch chi'n gweithio'ch chi'n gweithio'ch chi'n gweithio'ch chi'n gweithio'ch. You know, you're you're the autistic person in the room there doing the training and you'd have no idea what you're stepping into in that training with those mental health professionals. You don't know what experiences they're going to bring.

how they're going to talk, language they're going to use. I don't and I just wonder how you How you manage that, Lauren, of doing this work? Because you've you've immersed yourself into you know a very uh the the world of advocacy and activism and um you know really wanting to be that voice. And but by doing that, you you are having to relive.

those experiences, even talking about it today and and the association, even between you talking about being pregnant and the thought of having to be taken, you know, something happens to me in my pregnancy or in childbirth. I don't I can't be taken back to the hospital where that trauma took place. So when I left, that's why I went off on a tangent. When I left, um and I was

essentially coming down from all of the drugs that had been flushed through my body and all the trauma in this hyper arousal state that I was somehow coping in. Um One of the first thoughts that I had, well, even before that actually, but one of the first thoughts that I had was, I don't want my sister to ever have to go through this. And then that led on to I don't want any other black girl who might be misunderstood like me to go through this because this is

A this is actually insanity. Like what has um what I've endured here, this is not right and it's not okay. And there's no amount of talking as assertive and knowledgeable that I am, there's no amount of talking that has saved me. And in fact, I was situationally mute because I felt that talking, the more I spoke, the worse things were. Um, the the the crazier they thought I was or I was presenting. So I was mute.

Mae'n ymwneud â ni, mae'n ymwneud â ni, mae'n ymwneud â ni, mae'n ymwneud â ni, mae'n ymwneud â ni, mae'n ymwneud â ni, mae'n ymwneud â ni. Yeah, I just need to make I I compartmentalise my feelings. And I just ensure that I come across in the best way possible, um, that I'm prepared, as I have been through life really, before and since my diagnosis, I'm prepared for the worst. I'm prepared to be judged.

I'm prepared to be upset and people cause me distress, but that the insight is that people who look like me less and less, hopefully, will um be having these experiences. people that I love less and less will be having these experiences because it's just not okay. So sometimes I do sit there and I think, how, why am I so tired? Why am I so burnt out? How am I managing to do this? Should I stop? Do I want to stop? But the answer is no, because. I said when I came out

In fact, when I was in handcuffs screaming and being dragged in, I said, Remember my face because I'm coming back to train you. This is who I am. My name's Lauren, et cetera, et cetera. I'm autistic, I'm an advocate, and I will be back to train you. So make sure you remember me. And then this. uh program came and I was recommended um to some of the directors by somebody that has helped me a lot um being autistic and

Yeah, I it couldn't have come at a better time. I was at a place where I felt like I was healed enough to be able to re-traumatize myself and that it was worth it. Um it it balanced it out that reliving that trauma. Um because as I've said, it's about the end goal and not just about people that look and can relate to me, but also all autistic people because and all people that

It's not designed to make them better. It doesn't help. It actually hinders and escalates any concerns or challenges that maybe somebody's gone in with at the time because of various reasons, but yeah, anybody that I can help essentially through sharing my experience, through sitting with those professionals and challenging their mindsets, challenging their narratives. Um that's what makes me happy at the end of the day.

Beth yw'ch chi'n gwneud? Beth yw'ch chi'n gwneud? Beth yw'ch chi'n gwneud? Beth yw'ch chi'n gwneud? Beth yw'ch chi'n gwneud? So I really wanted to be representation that I miss. growing up, um, I wanted to put stories like mine, not just about being sectioned, but through education, through um therapy not working, different stages of life.

where I feel that were missed opportunities. I wanted to put those stories out there of mine and of others, anybody that wanted to share those. And I wanted to really go frontline staff. I really wanted to educate um the police, educate paramedics and other hospital staff and medical staff that may interact with people. Um Because my childhood was such a traumatic thing for me, I have tended not to really want to work.

with other children because I just find it way too personal and I find it hard to detach my emotions. So my way of giving back through mask off was ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud ymwneud

come into contact with and the services that have failed me and doing everything that I can to be able to educate, to change and to empower others to to feel that they can do the same. Because often I feel like my voice is Um, in a lot of spaces in day to day life, my voice is not appreciated.

Because people often think, well, you can be autistic, but you can't advocate for yourself. You can't stick up for yourself and you certainly can't stick up for other people. And then my response to that is nobody has. So that's where my sense of justice comes in, where I don't know how, but I feel like I have to because if no if we keep repeating this cycle of nobody speaking out, nobody saying, actually I'm autistic.

I look like this, I behave like this, you wouldn't recogni you wouldn't notice me in your daily life, but I actually really have these struggles or I've been sectioned, I've been through that. Until more people start talking about things like that, then nothing is going to improve and nothing's going to change. At the end of the day, we're all human. So whether you have a PhD, whether you're a doctor, you're still not.

as equipped to speak about something like being sectioned and how being a black woman who was brought in by police, you're not equipped to speak about that because you're so far removed from that experience. So who better to speak about it? than myself or somebody who... shares that experience, that lived experience. That's what Mask Off's about. It's just about advocacy, going along my personal journey because it's not perfect and seeing where there are flaws and places that maybe I can help.

And such important work and I wonder, Lauren, who who your role model is, who inspires you, who's your autistic role model, who have been the light givers in in your journey, who you'd want to give a mention to? I love that term, light giver. And that's exactly what she's been. So her name is Vanessa Bob. You may have encountered her. Um

Vanessa Bob has an organization called A Second Voice, and it's a community interest company as well. Um, and the way that I actually encountered Vanessa was when I was diagnosed and I was looking for a black woman who was autistic, um, She came up on the National Autistic Society's website. So I bookmarked her webpage and I didn't contact her for three years. And I had no plan to contact her because I didn't know what I was going to say. I just knew that there was someone else.

fairly local that looked like me and had maybe the experiences that I had. Um and then when I wa when I came out of being sectioned and my immediate support network were the ones that were fighting to keep me in there, I lost everybody and I lost Um Rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n rwy'n amser. Amen. So I just remember just

being at probably my lowest point and thinking, Oh, let me contact her and if she gets back to me, great. If not, then I'm not sure. Um and I did contact her and it turned out that we met up within forty five minutes. Um she said, Oh, are you contacting me about your son or your daughter? I said, It's about me. She said, Okay, that's fine. Can you get to this place? I said, I'll be there as quick as I can. And I got in my car and I drove and I just completely she said.

I think, how are you? Or do you want to tell me what's going on? And I just completely shut down. I was hysterical. I was on the floor crying, hyperventilating. I couldn't breathe. But In a moment, I was like, wow. She's not treating me in any funny way. She's actually given me distance. She's given me space. She's asked other people to give me space and to let me go through that in that moment. Ac yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r yw'r.

friendship, it built relationships back into my life. It meant that I was interacting with people and I was helping people, which is something that's really close to me. Um But yeah, that is and it she's only recently been diagnosed at the time it was her children that she had been fighting for, but she understood me and she respected

my opinions and she gave me agency and she helped me. She signposted me, but not only signposted me, she held my hand where I needed it to be held. And she helped me write letters that needed, I needed support with. Um, and she was only recently diagnosed as autistic herself, so Yeah, she is my autistic realm role model and she absolutely inspires me and many other families who interact with Vanessa and would share the same or similar stories.

Thank you for sharing that about Vanessa. And it goes to show, doesn't it, how important it is, the work that you're doing, Lauren. And you know, you will become and are that role model for other autistic women and other autistic girls, for your own daughter, you know, in the next generation. Mae'n ymwneud â'r safbwyntio, ac mae'n ymwneud â'r gweithio, mae'n ymwneud â'r amser, mae'n ymwneud â'r amser, amser, amser, amser, amser, amser, amser, amser, amser.

about holding a space without making assumptions. ac mae'r hyn yn ei wneud yn ei wneud. Ac mae'r hyn yn ei wneud yn ei wneud yn ei wneud.

And that is a myth or a stereotype. And I know it's really hard to narrow it down to one, but a myth or a stereotype, Lauren, that you that you want to undermine when it comes to autism. It's not a specific myth, but it's the myth that people of colour, women, other marginalized groups don't experience autism and if and when they do, if and when society and professionals are willing to accept that it's not in a stereotyped way. And I would like to dispel that myth and or those myths. And really

using humanistic care. Just ask people, what is it, as you said earlier, how can we help you? How does that affect you in in your daily life?

Mae'r bobl, mae'r profesiynol sydd wedi'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i'i' sp they might not have a specific focus in autism, but they have the professional tools to be able to assist and empower people and improve the care and the lives of those people.

So if you actually combine combine that those tools in a positive way when interacting with people that are actually asking for help, um put your biases, put your biases aside and just Think back to why you became a professional, think back to a society that we want to be, and just ask questions, be curious.

Ask how can I help? Would this help if give suggestions and take time to I know everybody's pushed for time and services are stretched, but it really doesn't take much to make small adaptations to your language, small adaptations of Google search. Um these are these are things that you can do instantly. Um so yeah, I just like to dispel that myth that somebody, for example, that looks like me, speaks like me, doesn't have

struggles because I very much have struggles. I struggle every day, as I've touched on, um, and so many others like me do. But unfortunately the way that the system is designed and the way that society, um, the expectations of society is that we just get on with it. And if we don't get on with it, there is no support for us. So

Just because I'm getting on with it, it doesn't mean that, you know, I should have to. It means that I'm doing my best to ensure that I'm supported because unfortunately, whether I I um display it or not. I'm not getting that support elsewhere. Thank you. And to say that Lauren, your voice is appreciated here today on this podcast. Our listeners will appreciate your voice and hearing your story and I know it will connect with so many of our listeners. So thank you.

so much for coming on and being so open about your experiences and sharing your your journey as a uh late discovered autistic woman. Thank you very much. Thank you for having me again and thank you for all the hard work that you're doing. Because yourself, you are also affected. So Rydyn ni'n gwneud rhywbeth o'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau'r pethau.

your podcast and the strength that you continue to show.