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The All 4 Inclusion Pod
The All 4 Inclusion Pod
#35 The trials & traumas of accessing education as a ND student
When those you trust work against you, what do you do and who do you turn too ?
Getting a diagnosis of being autistic or having ADHD is not quick and it's far from simple
The support for parents of autistic children is worse, but is it improving or is it getting worse
Jolene, a parent from South Wales was diagnosed Autistic and with ADHD within the past 18 months. Her three children all have neurodiverse diagnosis but all have different experiences of this.
She talks about both hers and her childrens mental health
She discusses battles with CAMHS and Schools
She talks about getting the right support
She talks about the need for more autistic voices
It was such a pleasure speaking to Jolene, if you want to follow her on twitter the link is below
JoSoHappy She/Her (@JoSoHappy83) / Twitter
Voiceover for intro and outro by Jennie Eriksen | LinkedIn
Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.
So welcome to The All 4 Inclusion pod, this week joining me is Jolene. So Jolene is autistic she has three neurodivergent autistic children. She has had many battles with institutions schools but has really come out fighting saying, and, and I believe that she's she is now really doing a lot of good for for people that are going to be going through the same as Jolene has. Now this episode it does come with a trigger warning there is talk about. Suicide and suicidal thoughts. So. If that is something that's going to trigger anything in yourself it might be best to tune in next week. So without further ado let's let's just jump right in
Scott Whitney:Hello, Jolene. We we finally sit down and and have a chat. Do you mind giving people listening today a bit of an introduction on yourself, if that's okay?
Jolene Martin:Okay I'm Jolene. I live in South Wales, Newport South Wales. I'm autistic and ADHD mother of three amazing neurodivergent children in different stages of diagnosis process because we all know where a mess is trying to get seen to get any sort of diagnosis. My so my oldest is adhd autistic, possibly EDS as well. My middle child is PDA autistic and waiting for adhd which she's being blocked from at the moment. I'll go into that bit. Molly, my youngest is a awaiting her ADHD assessment yeah I, didn't my, middle daughter was diagnosed when she was 8. We always knew, she's your sort of stereotypical autistic child that you would think of quirky own sense style and queen of put downs and things like that. So we always knew Lydia was autistic. My others just presented in a completely different ways, and I really didn't know much about autism then. I just knew it around what Lydia presented as there was issues going forward with my other children and I put my finger on it, but then I had the, light bulb moment when I found out about what ADHD was. And wow changed my life. I was like my, this is me. Wow. This is why I struggled so much my whole life. This makes sense And that, so that was like 18 months ago, and honestly, it's changed my life massively, like in a positive way. The person I am now you, I wouldn't have been even confident enough to have this conversation before I'd started really understanding my neuro divergence.
Scott Whitney:So what was that light bulb moment? 18 months ago? What was it that made you seek a diagnosis?
Jolene Martin:A little bit of background just before then. I'd worked for 20 years in an opticians. I started there full-time, obviously as they had the kids. I was part-time, plenty of time off in between now and then sick with anxiety, depression, exhaustion but because of the situation with the barriers to education and healthcare that my children were experiencing, I ended up having to leave my job. So that was in the May, and then after that I lost my routine. We were struggling financially I was just going around in circles, knocking on doors, trying to get help and support for my children who were severely struggling with mental health after lockdown and things. And I reached the point I dunno if I should talk about this only, but it was, I don't wanna like upset people, but I sent the kids to my mother's one day and I nearly killed myself because I thought it was the only way I could get somebody to take me seriously about how desperately my children needed help. But I didn't, I phone the Samaritans phone, the doctors. And then it was only like maybe two weeks later I happened to be watching this YouTube video and it was a doctor in Harley Street talking about describing an ADHD person and what their life may look like. And he literally described my life without even meeting me. I just couldn't believe. Honestly. And so since then I was just put on a waiting list for counseling that was the help I was offered when I was at the low point, but it was around then. I was like, wow. And I started the more I, understood myself, the more I was reaching out, I was finding support groups and I realized that I needed to stop putting my life on hold whilst I was trying to wait for the kids, because I'm falling apart, Everybody else in the house does. So this is why I'm so passionate about self care, parents wellbeing and so on, because you have to, you can't pour from an empty cup. And it's so true. As I was, I started learning about myself. I've gone to the doctors, I'm from my diagnosis and things like that. And then I joined something called Parent Voices in Wales. And, oh, sorry, just before then. I found an amazing, she's got a Facebook page called Brain Bow and she was doing circles for neuro divergent women and we could just, it's just a video call and we just together just talking about things that we were going through and honestly, being in a room with other neurodivergent people, I've never felt so safe. So understood so that I belong so much. It was massive. And then after that I found this parent Voices in Wales and through them is where I started getting involved in so many of the things that I'm involved with these days, which is I'm part of a co-production with our local health board and Ira Bevan Health Board and it's with parents who are been through or going through the process of that. In the neurodevelopmental services. So in the process of trying to get diagnosis and also people like doctors and other people who work for the health board coming together looking at what the big. It better and honestly the changes that are coming through. Because of that, I'm so proud of it, and then I started cheering some of the meetings and growing in confidence and then I'm like what else can I get involved in? This is great. Like you need to get like this neuro divergent voice of yours. In everywhere you possibly can. If you gotta make change and help people understand genuinely this is what you need to do. I've been unstoppable since then
Scott Whitney:And you, you said about when you wanted to end everything and you had that walk. To to, to your mums or, mother-in-laws, and you on that walk was, did you just feel there was just no support at all?
Jolene Martin:Yeah, no, I didn't walk. My mum's keep my lives in the next street down for me, so my literally, I just told, said, oh, you need to go. Nannies didn't make out anything was wrong, but I just had this aching in me. I just needed to end it. I just needed to, and in my head people would be like, oh wow, it must be really bad. Let's help the kids. It, it doesn't make sense cause they, me, but that's, I was point else listening to endless school meetings, battles, trying to get the kids in, being gas lit, the school being incapable of meeting their needs making it, it's my fault. The pressure from everyone to just get your kids to school was so hard. And I just felt like I, it wasn't the endless waiting list for everything I'll give you was my oldest all the way through primary school. I was always told she lacked confidence. She struggled social. She struggled reading and, things like that. And she started high school and it hit her like a turn of bricks. And then so she started in the September and then in January after Christmas, she was beaten up by two girls outside of the school. And the school tried to punish her for it as well. she didn't do anything wrong. And then a couple of weeks later, she took her first overdose. We were, we had to wait six weeks to be seen by Cahms and then because she finds it so hard talking about her emotions, addressing emotion, even understanding her emotions, she goes basically mute in situations. At the time they told me she'll refuse to engage. No, she just couldn't. So then she was left with no support again, but loads of time off school. the let's letters from school about attendance, school meetings, phone calls, they don't get back to You Just judgment from everyone. And then people around you are like just make a go to school. Just make a go to school. It's not that simple. And at the time I think especially being, autistic as well, you wanna, it's hard to trust your gut and listen to what you think is. because you've got so many people around you telling you what you should do. People who don't understand it, they've never experienced it, and you feel like you're failing as a parent. And it takes, first, it takes a lot of understanding of what's going on, and it takes confidence in yourself to be able to say, no, actually this is enough. And a couple of months before the, my situation, I was just talking about where I nearly took my life. She'd reached suicidal point again and we were actually encounter an emergency appointment and the school phoned me whilst I was in the waiting area and asked me if she'd be in school the next day. That's the sort of pressure the school's put on you. And that was from the, was it the safeguard? So she's in charge of safeguarding and she's ringing me asking me if my daughter's gonna be in school the next day when I'm at an emergency CAHMS appointment.
Scott Whitney:Putting that pressure on. Yeah. So your, oldest daughter, obviously in the CAMS process was, there when she was in secondary school. Kind of hindsight's a great thing. But when do you think it should have been picked up? At what age do you think?
Jolene Martin:All the way back. All the way back. Right back to when she first started school and the person she was in school didn't match or she was at home. At home, she was hundred miles an hour. Wouldn't see the danger in everything. She walked really early, fun, funny, loving kid impulsive. She used to escape all the time trying to get down to my mothers. She was climbing out of her at 16 months really early. Didn't see the danger things, but she go to school and she was quiet as a mouse. She had one friend all the way from school, and then they separated him in year five. And that crushed her even with the region, they'd say, oh, some kids, it's just, they just click later. Some kids just take longer to learn. I'm sorry, but going to year five and then just about starting to click in a little bit. Even now, not a confident with that, but instead of saying your child is lacks confidence, they need to look at why that child is struggling so much and behind in every subject in school.
Scott Whitney:So do you think from a perspective of a teacher's perspective, that's one thing that should be almost an immediate trigger to, to have a conversation with a parent.
Jolene Martin:Yeah. And the thing is,the more things are left, the more things are ignored. The more parent concerns a cast aside, the more trauma the child is experiencing. If it was understood and believed way further in the beginning. The thing is as well as a parent, when you go to a, lot of parents don't ha they don't live like in my world where I'm around you, so many neuro divergent people and back at that stage I didn't know anything about it really. So you think you go to school and speak to the teachers about it, you just think the teachers know and if they say, oh no, it's nothing to worry about you, believe them, you people don't even comprehend that. Actually teachers don't even know what they're looking for yet. They are gatekeepers for these things. Like you to get a diagnosis, you have to go through the school or the doctor. Neither of those people have enough knowledgeor understanding information about what they're looking for. There's a big problem as well in girls Look at me. It was missed my entire. There was loads of signs for me going back when I was in school, but it was missed cause I'm a girl. A girl and there's a big thing to say about children masking in school and not showing it when they're in school and then they explode when they come home. Which is definitely what, happens with my girls. But I don't believe it doesn't show in school. I think they just dunno what they're looking for. There's gonna be signs.
Scott Whitney:Yeah. Speaking to to a lot of autistic people. over the last year. I know there's some people who said they've been very, good at, masking it. But I think this is where if you have that conversation, what is someone like in school? What is someone like at home? If they're polar opposites, that's a bit of a, warning sign to say oh yeah, I'm wearing a mask.
Jolene Martin:And flip it the other way if a child was in school and then when it come to home time, the teacher had to grab them and drag them to get them outta school and force them to go to the parent, that would be red flags, warning signs, wellbeing, referrals, social services. But when it's the other way around, they still blame the parent. I don't understand that. Doesn't make sense.
Scott Whitney:Yeah. And and then with your with, your youngest two children were, diagnosis made. I, believe you said with your middle one, it was at about eight. So were, diagnosis made at. I say a, timing that you are happy with or were they still a little bit, yeah.
Jolene Martin:Yeah. Cause with Lydia, she was coping well. She had a little, especially her one little friend in who loved her, she had a little group of friends. I say friends, they were like little mothers around her. Used to do things for her, look after her. But she was really funny and her teachers used to get her the only reason. I put her in for diagnosis was because I thought time's coming on, she's going to high school, she's gonna need extra support in high school cause it's a whole other kettle of fish. So that's why I put her forward for, diagnosis then. And to be fair, when Lydia started in high school, She was in an extra supported class and she was thriving. You know what? She is a bright kid and she's funny. Her imagination blows me away. All of my kids are really funny and drive sense of humor I, I love it. But what, broke Lydia was lockdown, cuz she started in year seven and in the September, and then it was it like the following March, lockdown kicked. and she severely struggled with lockdown. She wanted to be back in school. She wanted her old life back. And then as time, and then things, she wasn't coping like she was starting just pace and pace around the room and going more. She's always going. We say into Lydia land, into her imagination in her mind. She listens to her music and she feels it, and then she imagines. All the things that's going on with the music in it's magical. I'd love to be able to go into Lydia land she was doing that more and more cause she couldn't cope with the outside world anymore. And then schools were open and they were shut and they and, I'll say I'm not saying they shouldn't have done that. I appreciate many people died with covid. It was dangerous and I didn't have a problem with that the time, but, there wasn't sufficient support for children like Lydia and there's no understanding of the, or there's no adequate support now to help them get back on track. And I think especially with neuro diversion, people say autistic in Lydia's case, as you go through life, you gradually pick up little coping mechanisms, little ways to deal with things, and then you automatically do. And so it doesn't seem like such a big thing, but when you haven't had to do those things for so long and then you suddenly in a massive school with hundreds of people and then you can hear all the noises around and all the different people, and there's so many changes. you haven't got the coping mechanisms that you used to have, if that makes sense. So it just got, couldn't cope being in school anymore. She was, and the schools, they just didn't support her through that. She was on like a time table. And I'm talking the odd hour a week for probably about, it's probably close to two years. I've got ADHD on timeline, so I, not exactly sure of the time scale. and I was asking the school can they must be, can she be assessed? Can she see an ed psych? She's not coping. She's, when she's in school, she's ended up in a room on her own. Cause she's getting too overwhelmed in the class. She's not actually learning anything. She's just there in a room on her own. What's the point? And the school like, no, we don't do that. We don't do that. We don't do that. They're supposed to review either on a time table. They're supposed to review it regular. see, I was going see if they can increase their long floor. They didn't do any of that. At, one point I was applying for DLA for her, and I asked the school for the paperwork they had for evidence, and they gave me a load of paperwork from a primary school. And I was like what, What's what she got in high school then? And then they gave me this one page profile from when she first started doing year seven. None of it matched to who she was. who the one day I managed to get her in and they changed their math teacher without telling her. And it was a day where it was a really bad day in class. All the kids were playing up and she came home and she was in an absolute mess. So I phoned the school explained what had happened and they were like, okay, oh, she would've been class would've been told about the change in the math teacher, but it must have been when Lydia wasn't in. I'm like, she struggles with change. She doesn't cope with transition. This is why she's on a time table. It's not good enough. You should have made sure she knew and prepared her. So we arranged when she was gonna go in, have an informal meeting with the new math teacher and the previous math teacher who she really liked. We were gonna work about changing around her timetable again. We're gonna do all this fine. Great explain to Lydia. Told her, got her to trust me. Went into school the ELENCO had gone off sick. The head of year had gone off sick. Nobody knew anything of what was supposed to be happening, so I'd done all our work together, back to school. Nobody knew anything. Couple of days later, but acting the deputy head, oh, what was supposed to happen then? Ah, you have to tell her everything they. I got Lydia to school. I think it was one more time. Lydia found somewhere to hide in school. I still don't know where she went. She wouldn't tell me. She still hasn't told me. And after that, she had a complete breakdown. She stopped eating, she stopped sleeping. She was pacing around. She's always been quite restrictive with what she'd eat. But I think this was around the time when the a like restricted eating really kicked in. Yeah. Very limited on what she'd eat. Yeah, ELANCO agreed she wasn't well enough to be in school, and then ELANCO just left it. There was no education, there was nothing. We put a referral in, went to doctors, put a referral in for Cahms for and they go to this thing called a space panel and they decide then what she needs. And they decided because she's autistic, obviously she doesn't need mental health help. And they said they'd put it to this CAHMS team, which is child with additional needs. So I thought, oh obviously know kids like Lydia. They'll know what assessment she needs. They'll know things that'll help her. They sounds. No, they told me it would be four months for it to be assigned a case worker, which never happened. So this was last year. Now that never happened. Endless meetings with the school. Or you just need to go into school, or you just need to go into school. Just need to is that simple? She can't, you can't, obviously can't support her. I've tried for years. I've tried all these things. You are suggesting you failed to look after her, to meet her needs and to educate her. She can't cope in that mainstream setting anymore. She needs a smaller setting, and actually she's so traumatized by education. Or the only way now to go to engage with learning would be a home tutor at first, and then you're gonna have to take your time. She's PDA as well, so very demand avoidant. You're gonna have to take your time to build a relationship up and then hopefully as she starts engaging and learning, it'll build a confidence up. No, we can do that. No, we can do that. Rounding, circles. Then in November, finally we started having these team around family meeting. Which, which I can't explain to you as, an autistic person, how hard, how much it takes out of me, how draining it is. It is traumatic. I, really think I've got PTSD from it or it's so hard going around and there's so many people, especially as for all three. So there's so many people in the room, you're trying to remember what everyone's saying. They don't say what they mean. They talk in strange neurotypical language, but just say what you mean. Don't like imply things tell me and then if I'll ask questions cuz I need to understand things clearly, then they'll get funny as if I'm Oh dear you questioning. And it's, no, it's not that I genuinely need to understand sometimes it takes a bit longer for, especially in a stressful situation, it takes longer for the information to sit in my brain it in these, around the family meetings that all this CAHMS team were going provide to me as an autistic person, an autistic advocate involved in so many things they thought quality needed was for me to do a parenting course to understand Lydia's autism. And that was it, my daughter, and had a complete breakdown and we're talking 10 months later and all they're gonna offer is for me to do a parenting course to learn about autism.
Scott Whitney:Yeah, that's I can see where, why that can be a first step for some people. You can only learn so much about autism through a textbook. And I guess even autistic people themselves aren't necessarily experts in autism because it can show in different ways with different people. Just like all individuals are different. It is it, but. There's no better expert than someone who is autistic.
Jolene Martin:Exactly. So that seems And, it's just got parent blame written all over it. Like I can understand maybe these courses, but especially some parents are really isolated as well. They haven't got support around them. But by this time you. I was doing, I was a started doing those carers, the Twitter space chats that I do with Marie. A volunteer with Newport Mine to help parents with children experience in emotionally based school avoidance. I was doing all this work with the neuro development team and the health board. I was taking part in cross panel Debates was it cross in the Welsh government? And I and I was an autistic representative there. I'm doing this thing called equal power, equal voice, which is things with Welsh government to get more LGBTQ disabled and East, so different ethnic minorities and things like that into public life. I was in it, I knew my stuff like, and there's more, even more than that I can't even remember right now cause my ADHD not playing game. I'd already formed my own support work. I didn't need that. It's ridiculous. And, I don't think a parenting course should ever be the only thing offered. Yes, it can be offered in parallel with the mental health support that they need. but not the only thing you know. And at no point did. And, also when you're talking to a parent, ask the parents what you, what they feel is needed. Don't, make a decision for the family. Make a decision with the family, cause I would've told them right at the beginning, no, thank you. I don't need.
Scott Whitney:Yeah, it's like a tick box exercise, one cap fits all, and just just almost nothing to do with us as you said. So what needs to be done?
Jolene Martin:I feel that like people like myself, parent, carers, need to get involved. Worm your way in, in every way you possibly can. It's great having a rant on Twitter and it's great trying to shine a light on things, but if you actually wanna make meaningful change, you need to get involved with things. Oh, some of the changes that's coming about the neurodevelopmental team and our health board. Better communication in the letters that are being sent, explaining what the appointments are, sending pictures of the staff so the children could be better prepared, explaining what different roles are. More information offered up about more support whilst you're waiting for diagnosis, more support after diagnosis. And that's all coming about because of the work our team is doing in this co-production. I'm so excited. They're even doing like a cartoon story. Look there's a saying, it takes a village to raise a child. We wanna do an animation like a village, just with all the different departments that are involved with around your neurodivergent child, and just explaining a bit what they do. Stopping all the jargon in the letters. Like for example, you've got a, you wait and wait for a letter for cams. they send you an appointment. They don't tell you what it's for. They don't tell you who you're speaking to. They don't tell you what to expect, and they don't tell you what'll happen next, process of it all. So you go in blind. That's not fair because for one, the parents really stressed anyway to get to that point. And then how can you prepare your child to be comfortable in that appointment? Things like that. I think. obviously there's a huge bottleneck of kids waiting for diagnosis. I think that it needs to be go upstream. Parents need to believe as soon as possible because yes, I do believe as in you're a neurodivergent person, you should have access to that diagnosis because for me, it's deep in my core of who I am. Really I do resent the fact you've gotta go and speak to some probably neurotypical doctor that's learned from books to confirm to me where I know I am, but maybe that's just me being extreme. But you need that diagnosis going forward to understand yourself all through your life, especially in women pregnancy, childbirth, relationships, running your house. You know you need that. But if the children's needs. Whilst you're waiting for diagnosis, there wouldn't be that agency. The children wouldn't be so traumatized. So then there would be less pressure on cahms because the children wouldn't be breaking. And I think also the way Schools are. It's alright having like little sections for what they say like special needs kids. I don't even like that term no, the whole school needs to be inclusive. Everybody needs to know, like some kids have this brain type, some kids have this brain type, some kids have this brain type, just like people have blonde hair, brain hair, that's just the way we are, like inclusivity and genuinely understanding. this is what the change needs to be. I d away many hundreds of years gonna take to get that point, but child doesn't feel that they're less than or broken. They understand. They've got amazing brains actually. They're capable of fantastic things. But to have, this is how it's with my youngest, for example, however I've explained ADHD to her. Is she's got this ADHD brain like a mum which makes her amazing. Like she can hyperfocus, she's she's 10 and she can cook like full roast dinners and curries and all sorts, like she excels in certain areas because she can hyperfocus and really learn on it, but she understands. because she's got this brain tap. She also feels all the emotions bigger maybe than other people. So we have to learn ways so we can regulate ourselves and understand our bodies. There's nothing negative in that. It's just understanding how you need to manage yourself. And I think that's what kids really need, understanding of themselves. And also I've, I'd say over time, maybe I've completely changed how I parent When I was younger, I was born in I was an eighties child. My parents obviously didn't know I was an autistic in a adhd. It was on the awareness then and I was the miserable, oversensitive, grumpy, and because I was told and made to feel that way and I was punished for overreacting or having big emotions. Now as an adult, I've had to have so much therapy because my core really believed I was that faulty person. This is the gift my neurodiverse understanding my neuro divergence has given me. Now I understand actually that maybe, yes, I do struggle with emotional regulation and it's emotional rollercoaster. Also, it brings me the amazing things. I'm excellent with people, like I'm really empathatic, em I can't get the word out properly. I can pick things up in a room that other people don't notice. I'm really good at making people feel comfortable. I'm really good at taking a step back and seeing things from all different perspectives and then, Slow to form my opinion. Yes, I could, once my opinion is formed, I could be rigid and it's hard to come back off that. But I put so much work into make to form in that opinion. I don't just decide for reading one newsletter or whatever. Kids just need to learn understand themselves and again, with the parenting, my kids are not afraid of them. The emotions like like I was, I feel so much shame for being upset or getting too angry or whatever. Whereas look, the other day I, on the weekends, I'd been somewhere. And then I got back and some, and I was al like I was overstimulated and things were building up, but something happened and it just set me off and I was like, raaa and a tan and I threw my phone across the room. And that doesn't say like gentle parenting, does it be? Actually what happened was my youngest came out, he said, what's the matter? And I was like, I'm just really, I said, I'm just really triggered at the moment and I'm struggling. I'm really angry and I'm finding it hard to calm myself down. She understands that because that's what she experiences when she gets outta school and stuff. So she gave me space a calm when I come in the room then, her and Lydia just came in. I like, oh, what What helps me when I'm like, that Mommy is, I do this or I do that. I recommend you try some Play-Doh or this or that, because they really understood it's okay to do that because that's part of being adhd. There was no shame. There was no, fear was just a neuro of family understanding each other. I thought that was quite magical. Afterwards I was like, oh, you can see the. Seems crazy to other people or different families there's not that shame of the anger or the, bad emotions. And I think things like that really help our children. Sorry if I just went off on a massive tangent, like every passionate about
Scott Whitney:Yeah, no worries. No it's good cause it gives people that full kind of understanding. One thing I'm gonna, I'm gonna pick up on cause actually. Made me think of something that I was going to ask you earlier, and then with my brain fog completely forgotten. So you mentioned neurotypical doctor and with I think with autistic people and some neurodiverse people, there's a real either anger or frustration with either how and things are said or how things are portrayed. Is that, in your opinion, just come from years and years of just neurotypical people like myself, not listening and constantly wanting you to flex to neurotypical ways instead of being flexing and making things easier for, people who are neurodivergent.
Jolene Martin:Yeah we, do. I spent my entire life masking, trying to fit into society. Trying to be what's expected, beating myself up for saying the wrong thing, thinking there's something wrong with me for being uncomfortable in situations, having to try and prove myself. Having to constantly explain myself and, sometimes I say you in a joking way. I don't always, it's not like a militant thing sometimes it's joking. But I think also it's one thing learning from books and it's another thing learning. From your life, and it's hard to explain. As I mentioned in the beginning, how Calm and relaxing and peaceful it is being in a room with other newer, divergent people, honestly, it's so good for your wellbeing because. you're not worried about fidgeting too much. You're not worried about saying the wrong thing. You're not worried about interrupting or you're not, if you're a bit off, you're just like, oh, I'm struggling with my words today. And they just get it. You're not having to hide or act differently. Or if you're overwhelmed and you're like, oh, I've goggled to the toilet, I just need to calm down. They just get it. It's not you ok? Are you ok? It's, they just underst. and it's hard to I don't feel that unless you are actually neuro divergent, you can really understand that and we can pick up on things that you can tell somebody's uncomfortable that other people wouldn't maybe notice as easily. So yeah. It's things like that. And also there is the, old autistic people are stupid. The autistic people come make the real mind up. We know what's best for you. Actually, if you just listen to us or, not, just let us have a seat at the table and listen to what we gotta say. And it also gets on my nerves. I we were in a discussion before about should autistic voices be heard, or parents of autistic people. And I'll say this as a, I know I'm autistic now, but when Lydia was younger, I didn't realize I was autistic. I hadn't been around autistic people. I didn't have the understanding that I have now when autistic people speak for a start, I was that child I struggled with and I hate it when people. Or some people suffer mildly with autism. Nobody would be diagnosed autistic if it would just mildly affected their life. If you say that you have no idea about the diagnostic process you have to go through, it's ridiculous. I much you have to go through to be diagnosed autistic. It has to affect you so many areas of your life through your whole life. So that is demeaning or I feel disrespectful and the thing it's. People don't realize that autism isn't like a high chart where some people are like really, low and some people are really high. That's not how it is. We all really struggle in certain areas and it's just having respect for that and not demeaning, like I'm talking to you now as maybe an articulate adult, but you haven't seen the mess I've been in today. Cause somebody from the school randomly came up at the house a bit. Absolute mess and they'll wipe the ache for days. People don't see that. And then it gets really frustrating when you are trying to genuinely help this parent's child because you were that child. Or even what I know where every autistic person is different. But a lot of the things we struggle with are similar, can be similar. And we can just have massive empathy. So we if, we are given an opinion or we are trying to talk to about something, it's because we genuinely care about this, other autistic human we're very protective. It's not coming from a US versus you. It's from, a listen to us let us help respect our because we've gone through our whole life covering up, and then, when we're openly autistic and we're talking about the way we see things, we're either told off of being too abrupt or dismissed or just not respected. I think I, can't find the right words for it. Yeah. We're all, say for example, you were setting up a support group for people from like the community, you would never dream of setting it up, run by all white people and then expecting the people from the communities to come in and feel comfortable with that. Would you? You just wouldn't, would you? It just wouldn't work. So why, if you're gonna set up a support group, for autistic people, wouldn't you have at least autistic people involved in the running of the group?
Scott Whitney:Yeah, definitely. Definitely. But yeah, it comes down to kind of people thinking they know what's best when I I always just think communication, having an open mind are the two best ways because I'm disabled, but other people who've got who, who have disabilities, if they was to run a support group on my condition like you said, they wouldn't have a clue. I'm not sure I would, to be fair, but they, I know they definitely wouldn't either. Okay. So finally then as we're coming to the point where we're looking to, wrap up how different would, let's say these last 15 years or so, do you think, being for you, if there was no social media
Jolene Martin:Ooh. Extremely isolated. Extremely isolated, I think, and especially since lockdown, I got into the routine of being home and now I still really struggle, be getting back into the routine of going out. I'm safe and comfortable home. I don't have to deal. the people I don't have to be, I don't have to worry about planning conversations or answers. If people talk to me and I'm not expecting it, I'm comfortable at home and also I wouldn't have met. Any of the amazing people that I've now, that now brighten up my life these people like people from parents' voices who are amazing and I'm so inspired by them and, that's made my life grow so much. I'm involved with so much, I'm making really good changes for people people like meeting Marie, who I do the Twitter space with, I wouldn't have met her. I also wouldn't have the knowledge and understanding. to do the things to help my family and parent the way my children need to be parented. All of that is from social media. Yeah, it's a lifeline. And I would say, I like when you've gone, you are children there's always this concern about agreeing on on tablets and things or online too often. Actually. Friendships, neuro divergent people form, and I, yes, you have to make sure you keep'em safe and monitor it and so on. But quite often those friendships are really strong. It's great for their confidence and those friendships can last a lifetime. So I think there's a lot, I, there's obviously, there's a lot of bad things about social media and you have to be careful to do, sometimes it can get overwhelming and you need to take a step back sometimes, don't you? I think there's more positives than negatives for people like me anyway.
Scott Whitney:Excellent. And, you said like you would be in more than going out. That's something that you mentioned a minute ago. How did like supermarkets and clothes shops and things like that feel for you just completely. Is it all sensory?
Jolene Martin:Is it, yeah. Too many and there's too many choices. I can't make decisions. I, honestly, there's so many varieties of all, so many things. And then like it stresses me out just looking at it all. And then it's the lighting and the noise and then the people, and then I've got adhd. My memory's really bad trying to remember, cause obviously I'll do a, and then, yeah, there's too many choices. I really struggle with making choices.
Scott Whitney:Yeah. So I think that's one thing that people don't really appreciate and understand is. is how triggering or how hard going into a supermarket can be.
Jolene Martin:Yeah. And also if I go out once and come home, I can go back out again. Yeah. Because I'm done. It just would take too much. Obviously sometimes I have to go back from school. I do really, struggle with. if nobody else can pick her up, obviously I have to. I'm a mum and she's she's nearly 11 now. Sometimes she'll ride her bike, so she'll come home by herself. But other times she wants me to go and get, so obviously I have to, but I really struggle with it. If I've been out and come back in, I can't go back out again. Last me done, so it's so you know, nobody or being autistic, nobody experiences it mildly. That doesn't. Yeah.
Scott Whitney:And if you've got just one tip that you can give someone who's a parent that they have an inkling that their child may have a D H D may be autistic, what would that be?
Jolene Martin:Delve into the neuro divergent community. They'll embrace you. They'll advise. they'll help you understand your child. I'm doing work through, it's funded by the health board is another one of these changes that's brought in the work we're doing every where parents can come and we can go and they can just chat with people like myself who are, when you are a division to, and they can be like, why does my child do this? Why does my child do? And I can just sit with a nice, my favorite thing to do in the world. Just give them an insight into what the child's experiencing. That's magical. So I would say as much as possible, listen to the neuro community. We'll, we've got you. We'll look after you Excellent. We care about those children. We don't want those children to be traumatized adults like. Thank you.
Scott Whitney:Thank you so much Jolene, for for your time this evening. It's been absolutely great listening to you, learning so much from you, and I'm sure our listeners will will feel the same. So thank you so much.
Jolene Martin:Thank you.
So that was Jolene. That was the experiences and the life that let Jolene's and the children have been been living. We can do better. We need to do better there is. No way. That that is fair. To be happening. It's a hundreds to thousands of people. In this day and age, the it just needs to improve. And it leads us on quite, quite nicely in our journey. To next week where I shall be talking mental health with, with Rachel. So. Joined back in next week. And. We'll see where where it leads
