Tony Mantor: Why Not Me ? - Marie Martin: From Telecommunications to Warrior Mom – Transforming Autism Advocacy and Challenging Systemic Barriers

Episode Date: June 5, 2024

Send us a text Marie Martin never imagined she'd become a fierce advocate for her autistic son, Zach, but life had other plans. J oin us as Marie reveals her transformative journey from a telecommunications professional to a warrior mom, equipped with a wealth of knowledge about autism, ADHD, and co-occurring conditions. You'll gain invaluable insights from her experiences, including the hurdles she and her family face due to Zach's demand avoidant profile and severe anxiety. The episode takes a critical look at the systemic flaws within the UK's Children and Families Act 2014, particularly its impact on Special Educational Needs and Disabilities (SEND). Marie unpacks the deficiencies in professional training and accountability, as well as the pressures placed on local authorities through initiatives like "safety valves." Hear a poignant personal story that underscores the desperate need for better resources and independent support systems, advocating for a more inclusive and effective educational landscape. But Marie's advocacy doesn't stop at education. Learn about Zach's incredible journey into the workforce, where despite his talents and glowing testimonials from companies like National Grid and Morrison's Energy, he faced significant challenges. Marie's relentless efforts in fighting for neurodivergent employment opportunities, including going to the press and harnessing the power of social media, emphasize the urgent need for systemic change. As the episode concludes, we call upon our listeners to join forces in spreading the message that no one should face these struggles alone. https://tonymantor.com https://Facebook.com/tonymantor https://instagram.com/tonymantor https://twitter.com/tonymantor https://youtube.com/tonymantormusic intro/outro music bed written by T. Wild Why Not Me the World music published by Mantor Music (BMI) The content on Why Not Me: Embracing Autism amd Mental Health Worldwide, including discussions on mental health, autism, and related topics, is provided for informational and entertainment purposes only. The views and opinions expressed by guests are their own and do not reflect those of the podcast, its hosts, or affiliates.Why Not Me is not a medical or mental health professional and does not endorse or verify the accuracy, efficacy, safety of any treatments, programs, or advice discussed.Listeners should consult qualified healthcare professionals, such as licensed therapists, psychologists, or physicians, before making decisions about mental health or autism- related care.Reliance on this podcast's contents is at the listener's own risk. Why Not Me is not liable for any outcomes, financial or otherwise, resulting from actions taken based on the information provided. Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Why Not Me The World Podcast, hosted by Tony Mantor. Broadcasting from Music City, USA, Nashville, Tennessee. Join us as our guests tell us their stories. Some will make your laugh, some will make you cry. Real-life people who will inspire and show that you are not alone in this world. hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me the World.

Today's guest is Marie Martin. She's a former telecommunications professional turned send warrior mom. Marie has been navigating the complex landscape of support and future planning for her autistic son, Zach. She has such a great story and it's just great that she could join us today. Thanks for coming on. Thank you for asking. Oh, it's my pleasure. I'm really happy our paths have crossed.

One is because we're both an advocate for autism, awareness, acceptance, and, of course, understanding. Two, is I'm hoping that the story that you have to tell on my podcast will resonate with others and can help them as well. I think that's brilliant because, you know, we need more people like you. And unlike you, I didn't intentionally step into the Cendarina. I knew nothing about disability pride to having my son. And then all of a sudden,

I've got this bundle of joy that's quite a lot different to other babies and young children. And it threw me into turmoil. I got nobody to talk to. I didn't know what was happening, really. And it was really scary and quite isolating. Sure. I didn't start out to do any of this. It's just evolved, really, through the deficits of the system, letting my son down, the fight for education.

And thinking differently, doing things in a different way in order for him to, not only thrive but survive at times. So, yeah, I don't think any of us set out to do this intentionally. Maybe it's our quest. Yeah. Now you say your son is autistic. How old is he now? Okay, well, he will be 21 in July and he was diagnosed at three years old. Okay. And that's not just autistic. He's ADHD with a, actually, his autism's got a demand avoidant profile. So lots of people referred to as PDA, which is pathological demand avoidant, so a demand avoidant and type profile, which is a very tricky to manage. Everybody refers to it as PDA, but it's not in the medical books, so they have to say with the demand avoidant profile and severe anxiety, trauma and ticks.

So he's got quite a cocktail of disabilities going on. When I first started my podcast, I was talking with most people that were autistic. In the last several months, it's evolved into what you just described. A lot of people are finding out that they're ADHD and autistic and they're getting that combination where they're having a struggle on both sides. Now, your son's got ADHD and autism along with the other things. My question is, a lot of people have told me that the ADHD will pull them one way, the autism will pull them the other way. So how do they cope with that? You're absolutely wrong. It does. And it also not only pulls in opposite direction, directions. And Mysson explains it as if it's almost got two sides to him. There's one side that

wants to comply and there's the other side that said there's absolutely no way you're doing that. And actually, there are going to be penalties if you do that. I guess he's probably in a better position to be able to understand it because he actually lives it. But yeah, very conflicting. And what I also found was, I mean, way back when and 20 years ago, when we were looking into the early stages of what was going off, there was very little known about everything. And looking back from what I know now to what I knew then, which was nothing, I was being led down the path to teach him in ways that actually were inhibiting his growth. And because if you deal with a PDA type profile in the typical autistic manner, you get a completely different reaction. We've learned a lot. And obviously now he's of an age, whereas he can sort of give me feedback.

But, Mum, why did you say that? Because this is what reaction it had on me. I kind of already worked it out for myself by then. But, I mean, I'm always a big believer of parents, the experts on their own children, and the best experts will actually turn around. and tell you that. And the best experts who I've come across are the ones with lived experience because they just get it. Right. Now, you're talking 20 years ago when ADHD and autism wasn't very prevalent within the community of people talking about it. It was the big unknown. So with you going through that at his age of three, was there a big unknown where people really couldn't

diagnose anything? Did you get some people that actually kind of understood what he was going through that could help you. Yeah. I would say to that, hardly anybody understood anything. And I guess that's where the battle for Zach's right to support and understanding started. I mean, the very first time I went to the doctors to say, I'm a little bit concerned. I don't know. My child's just different.

He's doing this. He's doing that. He's not doing anything of the normal neurotypical. I don't like the word normal, but, you know, we sometimes have to. reference to it. Right. Yeah, friends who've got neurotypical children and nothing worked. The average everyday parenting things just didn't work. And I'd read upon an awful lot by this stage because I'm a person, if I don't know,

I'll make it my business to try and know and I just keep reading up until I do find the answers. Sure. And I read something that was regarding autism. And obviously, back then, the internet was in its real infancy. So knowledge was scarce. Right. When I went to the doctors, he just turned around and left me speechless, actually. He just turned around to me and said, well, you know, if he was autistic, it's not like I can give you a pill for it.

So I don't know why you're here. And I was like, wow. And I can remember just feeling completely and utterly flawed. Yeah. Literally took my breath away. I can just remember saying to him, of course, me being me, because obviously my bad, I had a career before I had sex. So I'm not really backward at coming forward with sort of comments. Sure.

I just turned around and I just looked at him and I said, a pill. I wasn't expecting a pill, probably a point in the right direction, a bit of guidance, some understanding and a bit of support was probably what I'm looking for. Right. Wasn't expecting a pill. But I can see I'm in the wrong place asking the wrong person, but just do me a favor. Don't talk down to me like I'm an absolute idiot because unfortunately for you. I'm not.

Right. And I remember just going home, feeling at a complete loss. I didn't know which way to turn. So I started researching again. Somewhere, I found this information that just, it was almost like a tick box. And my son ticked every one of these features. And I remember ringing the health visitor, sobbing down the phone, because I'd already reached out to the health visitor to say, something's different. I'm not sure what. And but it was, well, you know, we'll get to see you in the next couple of months when you come and have your assessment. And I rang sobbing down the phone and I just said, I've had this horrendous experience with the doctor. I'm absolutely reeling from it. I've done some more research. And I know now he is autistic. I found this information and he just fulfills the criteria. He ticks every box.

And I need you to come and see me quickly because I'm completely and utterly, well, just devastated. I just felt alone, confused, scared. Well, that's understandable. Because nobody who I could speak to could give me any answers or any reassurance, really, that things were going to be okay. Sure. I can see where that would be really scary. So now, as he grew, did he have any issues with the school system at all?

This seems to be one of the biggest issues I hear from all parents, no matter where they are, around the world. Yeah. I hear where a lot of schools just are not prepared for autistic people at all. Yeah. So how did that affect him? and of course, how did it affect you? All I can say, Tony, is it affected absolutely everything.

Sure. Right from the very early stages, I think in preschool, we had a really good infant school who appeared to understand and get it, and it just got harder and harder. Okay. We had an awful court case thrown into the situation where they didn't understand either, solicitor didn't understand so they were making decisions that were harming my child. And actually pointing the finger at me if I spoke up because I knew it was going to harm him or it wasn't going to work. Sure.

The more or less alienated me from my own child. And I guess that's looking back. That's where the trauma started right from education. And the more I've kind of dealt with it, the more I've looked into it and now I've become Sendwarium on making a difference. on Twitter in the last couple of years, the more I've realized that teachers aren't trained, they're not equipped. We have fantastic laws over here in the UK, the Children and Families Act 2014, but things haven't moved on.

And there is no accountability to the law. Right. So everything's twofold, really. There's no accountability to the laws. And also, people aren't trained. So professionals who are doing the jobs are going to understand autism or how to deal with it. Right. Just recently, you know, it's gone even a stage further because the government are now putting,

our government are now putting into and plan something called safety evolves because the local authorities aren't coping with the amount of money they're spending on send. And we have something called an education, health and care plan over in the UK, which goes from when the child's zero to 25 years old, which should cover everything that they need. It's basically a passport to their support, whether it's education, health, social care, physical. It's all documented. It could be fantastic. And when they released this, we thought it would be fantastic. Right. But there's no accountability to fulfilling the document. Or very few people know how to do a good health and education plan.

Right. And if they do, the local authorities don't want to go to help an education plan because it's a legally binding document and it's going to cost them money. So the education thing is an absolute huge thing for me. Well, that part is very important, especially in a child's life. It's quite terrifying because just going back to the safety valve, the government have now offered local authorities they're in deficit to sign up to a safety valve contract. Okay. What they're not telling everybody. openly is that the local authorities have to sign a contract to say they will reduce so many

HCs, they will reduce so many, so much of the content within EHCs, etc, etc. Or they lose the ability to be able to access this safety valve fund. You know, so that just tells me that send provisions just, it's already cut to the core and it's just going to get worse. So I've been running sessions on Twitter, sharing the load as an unpaid carer with those who get it. Okay. The live sessions, people come on, we have guest speakers,

just literally trying to fly the flag. Sure. Because I know how isolating this journey is. And I do intend to make a difference. It's a hard slop. Right. You know, a lot of people will help. They'll stand alongside you.

But it really needs somebody to join. forces. I'm in the process of setting up a community interest company and to look at independent companies to help me push this forward, to run more sessions, to empower parents. Just to help them because I'm one of them and I've been one of them for the last 20 years and it's pushed me and my son to places where neither others want to be. Right. And the education system doesn't help. There's so much parent blame and I've experienced that myself. What you just said, I've heard 100 times. that they blame the parents rather than what's going on. How did you find a way because your son is getting older,

he's going through changes, he's hitting his teens, puberty, hormonal changes, just life in general that would affect the average neurotypical person, but now you're having those things go through your son who's autistic and ADHD. How did you find a way to cope with that so that you could really educate some of these people that the parents aren't, the ones to the blame. It's a situation of where the parent and the child have to grow together and have to have help and support in order to blend into society so that they can take and contribute because it's well known that just because your autistic doesn't mean that you can't

contribute and can't do things, but people have this misconception. So how do you approach that so that you could take and let people know that this is what's going on? This is what needs to happen. And some of this is happening, but we need more. Yeah. I guess. My solutions and my path came from when we hit a crisis situation. So we tried mainstream, we tried special units, we tried government-funded independent schools. No one could meet his needs. And it got to a stage where he wasn't able to access school. He was being physically sick.

Or if he was there, it spent years out of school. It was horrific. and then I always have to take a deep breath when I talk about this bit. Because six years ago, he, and there's a trigger warning coming here for people, six years ago on the way home from school, I mean, I knew it had got bad, but I didn't realize it got this bad. And he said, there's something I've got to tell you, Mum. Well, I'm driving along.

I said, I think that's fine. You know, you can talk to me about anything. And he said, well, Marie, sorry. And he said, Mom, I know it's law that children. have to go to school, but I just can't take it anymore. And I've been looking at ways secretly to end my life. Wow, that's a really tough thing to hear. And it's just the worst, worst thing. Yes, it sure is hard to hear. Six years later, sometimes I can talk and I can say it. Other times, like today, I'm struggling a bit with it. Sure. We're just pulled into a Leibinds and I said,

you're never going back there again. Don't worry. We'll think of something. What? we'll have to do something differently. We'll think of something different. And I just thought we'd come to the end of the road, to be honest, Tony. Sure. They didn't know which way to turn. Sure. So anyway, back to more research, more bedtime reading at 3 o'clock in the morning.

When you're that stressed, you can't sleep. And I came across something called a personal educational project. Okay. Which was basically something that I could apply for to the local authority, which would allow, they'll only do it as an absolute last result and everything else. failed, but everything else have failed for us at this stage and I wanted him to live. Absolutely. And the personal educational budget was a way for me to be able to apply for an amount of money

to meet everything that was in this education, health and care plan. So it's therapy, schooling and everything. So I spoke to them about that. Obviously, had the backing from his psychiatrist, Anna, who was absolutely fantastic. I don't know what we would have done without Anna. She was amazing. But again, the drop off the face of the earth when the child turns 18 here and suddenly nothing. Right.

So, and I remembered, I thought, I've got to do something nice. I've got to stabilise his mental health somehow. And I remembered when Zat was eight years old, we'd attended a careers day. Okay. He'd asked a question, a question to this company called Costain and this man called Richard Paddy. And they weren't able to answer this technical question. And it was just about a bridge on a motorway and footing's being different. And they wrote to us a couple of weeks later, they said, you know,

don't know the answer, but we will get back to you, and they did. And I remembered them giving us an open-ended visit, which I'd offered to the various different placements since then, and nobody had taken them up on the offer. So I thought, come on, Marie, be brave, pick up the phone, ring Costain head office and see if he still works there. And he did. And they popped me through to one of the guys' mobile, Chris Hyde, who contacted Richard. Richard contacted me, did the most fantastic VIP day, which absolutely turned our lives around. I can't tell you how much it turned our lives around. That's great. I tell people to always keep moving forward. You never know what's around the corner that can help you. That one visit turned into so many more because they

realized what fantastic brains I could got, his special interest, his photographic memory, how it can hyperfocus, and all of those things. And then we started to regulate that one visit turned. And into lots of different visits. Nice. Loads of visits for the next five years based on that special interests. And then we wanted to get into the electricity transmission because Zach's other special interest. He's loved electricity pylons since he was three years old and had only two words at that stage.

Okay. And before Christmas and we did lots of visits, the construction people ended up getting us into the electricity transmission. And I did it via networking on LinkedIn. strangely enough. Right. And I showcased the visits and put videos on and photographs and write-ups. It's thank you to the company in the hope that people would reach out and they started to. That's nice. And then someone reached out and took us into the electricity transmission industry. And Zach's probably more like a celebrity now within the highways

and the electricity transmission. That's just so good. I mean, he just did a placement before Christmas with National Grid and he had the most amazing testament. because that can only take an information, which is pertinent to him, which is of interest to him. He said, my brain just does not take him, but he's very self-taught. And with the personal educational budget, he got everything, he got the therapy, he got the independence, he starts to get the academic studies. But unfortunately, again, after all that, the local authorities withdrew it. It was just formal complaints after formal complaint, which turned me in to send Warrior more,

because I thought, I'm not having this. You know, I went to press. So that's when the campaigning all started. Right. And, you know, to tell people that you might think you've come to the end of the road, but find your tribe, reach out to people are going to help you. Right. Because if you can just find those people, I mean, don't get me wrong.

It hasn't been easy and I've had to advocate very hard for that. Sure. And even the people from these companies are saying you shouldn't have had to work so hard. And I'm still having to work hard. Right. How can it be that you've got this young person 20 years old that knows probably more than anybody within National Grid that we've come across, even people who've been there for 30 years? Right. And still, it's difficult to try and get them on a proper, lengthy placement to move into employment. I mean, I did want to mention Morrison's energy. They were fantastic. Last summer, they reached out and they've wanted Zach.

since last summer. They said, we're not ticking boxes. We see the value. They're an amazing company. They're a lot smaller than National Grid, but they're still a good-sized company. They wanted Zach to go and work within the computer-assisted design department. Okay.

But Zach's Zach, Zach, Zach, and Zach loves the concept and the overhead lines transmission. And to be honest, it's really, really gifted. Right. You know, Zach's just perfect. for somebody to go trailblazing, to do something differently because it hasn't got the entry level studies, but hey, these companies need to stop ticking boxes and they need to start and change their entry level and make accommodations and do some bespoke things for people like that. Right.

Because they're amazing and they're our future, but they are never going to go down the traditional channels and the traditional route to employment. We just need change. And the people who've helped us, Richard and Jimmy, and people like that have not only given Zach a way to get his dream, they've also given me a voice to be able to help thousands of other people who dial into the sessions and reach out to me because I'm able to empower them, bring them together and let them know weekly that they're not on their own. And our story is just given so many people, hope Tony,

where the thought there is none, a bit like me when I was sat there thinking, this is the end of the line now, I don't know what to do. And I just consider myself lucky the fact that Zai was able to talk to me and turn to me because I hear so many horror stories and I've got personal friends who weren't so lucky their children didn't tell them. And I can't begin to imagine how that. feels. So I'm going to keep going no matter what. And Zach will succeed no matter what. If I have to sell people down the river, then I will do because I feel very, very passionate and we need

change. Absolutely. I've done a couple of episodes that's focused on, unfortunately, suicide. A lot of people do not realize that it is the second leading cause of death among autistic people worldwide. Yeah. So you're right. It definitely needs to change. Yeah. With that said, from what you've been talking about, even though your son was going through a very tough time, this is truly a success story. You started out with a lot of issues. You struggled, but bottom line is you found a way to get through them. Now, a lot of people are finding that he has a lot of talent, and he can figure out a lot of ways to get things done. Because of that, you became an advocate, which is a great thing. So now, how do people contact you?

you. So you might be able to help some of them get through some of things you've been through. Okay. Well, the main platforms that I use, and my main platform is Twitter. Okay. Follow me on Twitter. Send Warium on Making a Difference at Martina Marie. And I try to help wherever I can. I've now got just short of 14,000 followers literally in a couple of years. So I can't respond to everybody individually. Sure. But what I'm hoping to do is to grow a platform. Right.

To grow a company where we can make that difference together. What I have worked out, Tony, is that there's lots of people out there like me or similar to me who've had careers, who've got skills, and they're all being wasted because the system doesn't look after their children. They're unable to work because the children don't go to school, so they have to stay home and look after them. And it just changes everybody's life. Right.

You know, the sessions are another way. They're all online sharing the unpaid carer with those who get it. We have guest speakers on. So, you know, we have education solicitors. We have people talk about disability. We talk about current topics on Twitter. There is an army of us. We've created a nice community there.

So for anybody who's feeling lonely, they just dial into the sessions. And, you know, the comments come back. Wow. I've found my tribe. I feel at home. I don't feel alone anymore and I've picked up so much information. It's impossible to deal with everybody individually. But if we empower people and point them to the websites and to the links that they need, then that is serving a high majority of people. Obviously, I help individually wherever I can, but there's only one of me. And obviously, you know, I've also got Zach to kind of look after and advocate for and do the visits. I'm just hoping to grow, We just need to get maybe a couple of people on board who will back us and work with us just to make that difference.

So if anybody's listening and anybody wants to help us, then that would be amazing. Okay. So you're standing on a platform. You're speaking to 100 people, a thousand people, whatever the number may be. What is it that you would like to tell them? Don't give up. Listen to your gut feeling. You're the expert on your own child.

and if necessary, do things your way, do things differently, revolve their education or their lives, connect with them through their special interest. There will always be one in there. It's just a case of finding it like I did and then building things around that because you'll get engagement if you do that. And just don't lose hope.

And even if you think you've come to the end of the line, take a bit of time, a bit of self-care, whether it's 10 minutes, to have a coffee, a quiet coffee, a bath. Whatever you need to do, tomorrow is another day. It's never the end. Just don't lose hope. It'll be hard.

It's a marathon. It's certainly not a sprint. It won't be easy, but it will be worth it. Sure. And I ask that question a lot. So one of the big things that you said is that every parent knows their child better than anyone else. And I think that's a huge, huge statement that needs to be resonated among all parents, because that is so true. They know their kid better than anyone.

Yeah, it is. It is. That is the mission statement and the word hope. Absolutely. So is there anything that you'd like to touch upon that we may have missed? We've covered a lot of great things in this conversation. Yeah, no, just the fact that it's been a constant battle and, you know, the pair of blame has to stop. Yes. Parents are now getting too frightened to reach out and ask for help because what happens is that

sometimes social care will get involved and start pointing the finger and people are frightened of losing the children. Right. And it couldn't be that way. They need help. They need supporting. Right. We even get whistleblowers come on our sessions. You know, one social worker in particular said it was cheaper for a local authority to adopt the children out and to put a good support package in place. Yeah. That it just can't be right. And I think, yeah, just keep doing things your way. And also treat parents as people.

Right. We are individuals. We're not mum. We might be Zach's mum or John's mum or whatever, but we've also got an identity. We don't need blaming. We already beat ourselves up, wondering if we're enough, whether we're doing enough, whether we know enough. We don't need any help. or well, we don't need any help with blaming ourselves because we're already doing ourselves all day, every day, just to keep going really.

Right. I've really enjoyed, I've really enjoyed talking to you. It's been lovely just to do it completely off the cuff and just chat naturally. It's just been a battle for 20 years and it's exhausting, Tony. Yeah. I can help a handful of people or even one person, you know, I thought that when I was doing the sessions. If I can help a handful of people, then I will have done my job. I will have helped somebody.

But do you know what? Sometimes we get a thousand playbacks on our sessions. So we're helping a lot more people than what we originally set out to do. And actually, this is just the start of my journey. Yeah, and it's a great journey. That's kind of what I think with my podcast. If I can get one person that hears something and it helps them, then that is definitely a win.

It's all about information from people like yourself and others that have gone through things. and then hopefully it just helps someone along the way. Yeah, you have to do what works for you, don't you? And, you know, when you've met one autistic person, you've met one autistic person. That's said to me on just about every episode. Yeah, it is so true. Right.

A lot of the training is quite generic. And sometimes, you know, I brought PAs into work with Zach, and they've just not got their right understanding to be able to deal with him. So in the end, I fetch people in who I just thought they were, but how do you understand that? Yeah, I had a comedian that came on my podcast and he told me that he used his comedy to help break those barriers.

He had this girl, she didn't like anything. He sang her what he called a stupid little song. She remembered it and it made that connection. So you just never know when something like that can just happen. Yeah. So that just shows you never know what the connection will be but when you do find it and it works, You just continue so that it helps the people that need it.

Just finding that key. Finding that thing that works. Finding the key. Because if you can find the key, you can unlock the child or the young person. We need more therapists to find a case instead of trying to fit them into the box. Children are never going to fit into a box. I've never fitted into a box. I don't even want to fit into a box.

I don't even want to fit into anybody's box. Don't need to be honest. Yeah, me too. Well, I really appreciate you coming on. Thank you. take care and thanks again. It's been my pleasure. Thanks for taking the time out of your busy schedule to listen to our show today.

We hope that you enjoyed it as much as we enjoyed bringing it to you. If you know anyone that would like to tell us their story, send them to tonymentor.com. Contact, then they can give us their information so one day they may be a guest on our show. One more thing we ask, tell everyone everywhere about why not me the world, the conversations we're having and the inspiration our guests give to everyone, everywhere that you are not alone in this world.