Rachel Winder: Weaving the Bonds of Neurodiversity - A Mother and Son's Enlightening Odyssey through Autism and ADHD

Every family has its own unique tapestry of experiences, but for Rachel Winder, the threads of her life weaved a particularly intricate pattern. 
As an autistic mother raising an autistic child, she faces the world with a perspective that's as enlightening as it is challenging. 
Step into Rachel's shoes for a moment and you'll begin to understand the depth of neurodiversity's impact on identity, advocacy, and the unbreakable bond she shares with her son. 
Together, we navigate the complex journey of late diagnosis and the battle for recognition and support within a medical community often riddled with misconceptions.

The path to educational support for neurodivergent children can be a labyrinth of emotional and legal battles, but Rachel's resilience shines a beacon of hope for families navigating similar terrain. 
Her candid account sheds light on the transformation that occurs when a neurodivergent child finds a supportive community, and the importance of tailoring that support to the individual. 
We celebrate the remarkable transformation within the family dynamics and discover how every member, with their distinct neurodivergent traits, contributes to a richer, more harmonious home life.

Adolescence is an odyssey for any individual, and for those with ADHD and autism, it can be akin to navigating an entirely different dimension. 
Rachel opens up about the tools she and her son employ to manage their daily experiences, from humor to pattern recognition, offering a glimpse into the intricate dance of cognitive empathy and social cues. 
We traverse the landscape of therapeutic pathways that support the neurodiverse community and grapple with the ongoing pursuit of parenting, self-discovery, and the quest for inner peace. 
Rachel's story is a vivid affirmation of the autistic experience, illuminating the spectrum of diversity that enriches our world.

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intro/outro music bed written by T. Wild
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Transcript

Speaker 1: 0:05

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 you laugh, some will make you cry. Feel like 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 Rachel Winder. She's autistic and has a son that's autistic. Her story is fascinating. Thanks for coming on.

Speaker 2: 1:03

No, thank you for allowing me this space. Basically, I'm sorry. Sometimes I'm a bit nervous, I talk very quickly and then sometimes I can't find my words and then sometimes I'm like oh my god, I sounded really boring.

Speaker 1: 1:13

No need to be nervous here. You're definitely not boring and you've got a great story. I understand you have an autistic child, is that correct?

Speaker 2: 1:20

Yeah, yeah. So I'm autistic, ADHD, dyslexic, etc. I have the full shebang and my son, who's 10, he's basically like a carbon copy of me, but obviously not me. He has his own character. He and I discovered our identities he was four, I was 39, but when we actually received our official medical model diagnosis, I was 40 and he was five and a half. So, having spent 40 plus years of my life because I'm now 45, not knowing who I am, why I'm different, thinking that I was broken. But it's just amazing to have, like, given birth to an autistic, ADHD like me who can share the same not same, but similar experiences and share that insight and have that connection that I felt I didn't have growing up.

Speaker 1: 2:06

What led you to get diagnosed at a later age?

Speaker 2: 2:09

I didn't think I was autistic or ADHD. I had the kind of a sort of societal idea of what autism was, what wasn't, as it turns out to be, and so thought, well, I can't be autistic. Okay, I went to. Yeah, I was 25. I went to the GP because a friend of mine suggested that I might be autistic. So I went to the GP. The GP looked me up and down, said, oh, I'll refer you, because at that time there wasn't a waiting list like there is now. So like within a week I was seeing an inverted commas specialist.

Speaker 2: 2:40

I was not, I wasn't in his office for any more than five minutes and he was, you know, basically saying because you've got friends and because you can make eye contact there, for you can't be autistic. But you know, when you just sort of like, well, if they don't actually know what autism looks like without trauma, then obviously the people who are autistic can have mask their autistic characteristics because they were, like, perceived as being undesirable to the non autistic community and so we then hid those characteristics. That how are they ever going to spot anybody, you know? How are they ever going to know when everyone, all the autistic people, are like oh, I must be more like the predominant neurotype and less my autistic self, because not acceptable way to be in sort of gets me unwanted attention.

Speaker 2: 3:21

So so I sort of like decided, well, obviously the doctor must be right and I can't be autistic, and then I just went along with well, I must be broken. There must be something wrong with me, because I feel like, you know, I've got the pedal to the metal all the time, right. People keep telling me that you know you need to be more like this, you need to be more like that. I don't know how many times I've been told to turn over a new leaf. I'm not sure how many leaves I've turned over, but right probably, like you know, not to come forest woodland.

Speaker 2: 3:45

Right. So, yeah, it wasn't until 10 years after that, when I was 35, I gave birth to Harry, and when he was sort of two, I sort of thought, well, he's just like, he's got lots of things that are like me. Okay.

Speaker 2: 3:59

When he went to play school. They picked up on things, but they didn't want to talk to me about anything. That's one of the things. I had to raise it with them and they said, well, we've thought this for a while. And I was like, oh right, well, we didn't want to tell you, because sometimes parents become very hostile, very unhappy, when we say that their child is having difficulties. And I was like, oh right, I'd have rather have known. Right Sure.

Speaker 2: 4:19

You know, I'd have rather have you said you know, this is what's happening, but apparently that's not always what all parents want. So that was kind of the beginning. But to cut a long story short, he was seen by a health visitor who I don't think had a good commander what autism is or what autism isn't because she decided that my son can't be autistic because he's too intelligent and I sort of said well, I don't think intelligence is a measurement of whether you're autistic or not. So I had to push for that. She told me that she'd referred him to what here in the UK is called single point of access and that's like the first point of call, I guess, to sort of say you know, refer for diagnosis, for a fair assessment.

Speaker 2: 4:56

It was probably about two months later that I thought in fact I think it was probably more than two months, because I kept chasing people up but not really getting anyone, kept getting told you know, we're doing all we can. And then I actually contacted single point of access myself. And it's just before the summer holidays, when everything's going to shut down and I'm not going to be able to communicate with anyone. I was like I need to talk to somebody. So I communicated with them and they are told in my son's name and details and they said, no, it's never heard of your son, he's never been mentioned, never been registered with us. So the health visits had told me a lie and I had to prove that. So I got a PCT involved, which is the primary care trust. Okay.

Speaker 2: 5:33

And had to get them involved. So they came to my house with me and my husband present and I had to fight to get my son the assessment through, proving that the health visitor had delayed his assessment by six months. And in the meeting there was the sort of like it could tell they were wanting to get up and go and I just sort of said you know, with all due respect, if you leave now, I want you to know that I'm not going to drop this, I'm not going to give it up. So they sat down again and I showed them a few more documents that I'd sort of collected as evidence of the paper trail that I'd been keeping. They just sort of looked at it and went okay, we can't deny this.

Speaker 2: 6:09

I was like, what do you mean? Well, this shows that, yeah, there's been a delay and it's been caused by this particular health visitor. So I said, well, can you write to my son's pediatrician to say that this is what you found? Because I've written to them to tell them. But obviously they're not going to listen to just me Because I'm sure they get lots of parents asking them to move them up the waiting list. And basically they said, oh, I don't think we can do that because they're in a different like, they're not connected to the bills, and I was like I don't think royal mail will have a problem with that Right Meaning. Obviously you can post, communicate with them and post, you know, post letters to them.

Speaker 1: 6:44

Absolutely.

Speaker 2: 6:45

And I said, oh, before you send a letter, I want to see it before it goes. So they let me see the letter before it went. Lots of untruths and I fined I to them and corrected them and sent it back. And then they then sent that letter to the pediatrician and probably not just over a week went by and I got a phone call from the secretary of the pediatrician to say we can see your son in two weeks. So I did manage to scrape back the six months that we'd lost and they they'd obviously seen the letter and decided that yeah, he can be moved up the list.

Speaker 1: 7:14

That's great.

Speaker 2: 7:14

So I was assessed and I got my diagnosis, as it were, as what I call discovery of my identity, my autistic identity. And then my son got his 11 days later.

Speaker 1: 7:23

So how old is your son now? He is 10 now. How old was he when he got diagnosed?

Speaker 2: 7:28

He was five and a half when he got his diagnosis.

Speaker 1: 7:31

So how is he doing now and what are you doing for schooling form now that he's been diagnosed as autistic?

Speaker 2: 7:37

Okay. So this was like the next. You know, if you just like, oh, I thought that was it, I'm like, no, you've got more hurdles to climb over, okay, applying for an EHEP, going to mainstream school, telling the mainstream school that you think your son's autistic, you know, or all that stuff, and then sort of looking at him and then looking at me and going, no, I don't think so. So I was like, well, I give you two weeks. And that not even two weeks went by and they were like calling us in, wanting to talk yes, we think there is something, you know, that needs to be investigated, blah, blah, blah.

Speaker 2: 8:08

And this is the point where I was still trying to get the diagnosis. But it kind of connects with the starting school and leaving play school and going to sort of reception and what they call it here in the UK, which is first year at mainstream school. Yeah, so it was again. It was another kind of you've got to collect evidence, you've got to prove why he's juggling, why he needs an EHEP. And when I asked, can I apply for an EHCP, I was told that his needs weren't complex enough, to which my response was are you qualified to make that statement?

Speaker 1: 8:39

That was a great question. What was their response?

Speaker 2: 8:41

Their response was no, I'm not. So I said, with all due respect, I'm going to apply if you're happy to support me. And they said, yeah, they'll support me. So I basically applied for the EHCP. Okay.

Speaker 2: 8:52

I did all the collecting of evidence, I paid for private assessments to be done and then COVID hit and then my son had just got his EHCP just before they did lockdown. And because soon lockdown, they was in a mainstream school which were only allowing children who had parents, who were frontline staff or they had an EHCP were allowed to go in. So there were like 12, 15 children in a day. They were staying in one area of the school where they have like PE in the sports hall, and it is like an old, like traditional Victorian school, just to kind of set the scene. Okay.

Speaker 2: 9:26

It was at that point that school were saying your son's doing much better, he's catching up with lots of things. He's able to show us what he's capable of doing, because before then which I think, he was in year two when they had lockdown, so we'd been at school, the school, for three years. That's when we realized that it was all about the actual environment that was causing the problems, that it was too busy, too many transitions from one classroom moving to another part of the school, and all of that.

Speaker 1: 9:52

Well, that makes sense.

Speaker 2: 9:53

So that kind of helped move the EHCP along. But it went to appeal for the first time and then I was misinformed. But see, the problem is because I'm autistic, adhd, dyslexic and because I have chronic post-traumatic stress disorder because of having so many distressing experiences growing up not knowing, I'm autistic, adhd and also being dyslexic, meaning that I'm relying on other people who understand what's written in a letter, what's said in a meeting and all of this and just taking on what they're saying and letting them lead. And then I was misinformed during that. So I agreed to something which I wasn't really fully informed about and I thought this was a good thing. And it turned out it wasn't. So I had to wait another year for another tribunal.

Speaker 1: 10:38

That must have been really frustrating.

Speaker 2: 10:40

And again, that was like. It's just I don't know what the word would be, but it changes you.

Speaker 1: 10:46

Right sure.

Speaker 2: 10:46

Like the way the person I was before. All of this having to fight for like basic rights and getting a diagnosis of each then you can access the right support have just been very stressful and, I would say, traumatic. I would say that the process of trying to get a diagnosis and trying to get needs met is traumatic.

Speaker 1: 11:06

Sure. So after all that, how did it all turn out?

Speaker 2: 11:09

Now, after all that fighting of four years of fighting, lots of money spent, he is now at a specialist school which they don't have any more than five students in the class. The class that he's in at the minute only has three, including my son.

Speaker 1: 11:22

That's great.

Speaker 2: 11:23

He's supported one to one all the time, feature language therapy, occupational therapy all on site and he has access to those daily. The school also supports us at home. So maybe in a mainstream set and me asking for reasonable adjustments might not be welcomed with this school they actually recognize that. You know, being neurodivergent is genetic and therefore parents are likely to need support as well, so that they then can you know like the dynamic works. You know that you can sort of work as a team.

Speaker 1: 11:51

Right right.

Speaker 2: 11:52

So it's all very it's all very different in the school that he's at. When he was at mainstream school, he was sort of like two years behind. Okay. He spent a year at this specialist school like a full academic year, and he was working a year ahead of himself. Okay. After just 12, after just, you know, one academic year. So it just goes to show that autism plus environment equals outcome, which is Dr Nick Baird and Skaldin equation, sure.

Speaker 1: 12:16

So how's his daily life now? Does school affect his home life or home life affect his school? How's he doing overall?

Speaker 2: 12:25

Okay. So when we were at mainstream school, the home life was very difficult, incredibly stressful, very difficult, because I got two children. You know we're all neurodivergent. My youngest is six. He's an ADHD here and obviously I've said about my oldest, he's 10. He's autistic, adhd, dyslexic, dyspraxic, dyscalculia and all of that. Like me, they both have different needs, as any child would. Their needs are polar opposite. So I find that really hard to navigate because I'm autistic and ADHD, so I have my own internalized things going on and my ADHD wants fontanality, my autism wants routine and they're like kind of clashing. Okay.

Speaker 2: 13:07

It's the ADHD that wins and drags the autism along regardless. So then, and then, obviously, I'm dealing with the external environment, which is being a parent to two of the children, sure, who are just a constant like no, no day is ever dull, and because they have polar opposite needs.

Speaker 1: 13:25

Right.

Speaker 2: 13:25

And because I'm monotropic I don't know if you know about being monotropic, so my focus is just one thing. I can't do like lots of things at the same time. If I try to push myself to do that, I end up melting down. Okay.

Speaker 2: 13:38

So I have to like work really hard. You know, now my children are older and I can communicate with them and we've got more flexibility in the communication and it does help. But I do have to sort of put down boundaries for myself and help them create their own boundaries to help this family life run as smoothly as possible. But there are days where Harry might come home he's a bit overwhelmed about something. Maybe he didn't win at something.

Speaker 2: 14:02

He struggles, he struggles to lose at things that he's innately good at, and I suspect that that's probably a lasting effect of being in a mainstream school and I'm only having been in a specialty school for a year and a half now where he would see his mainstream peers being able to do all these things that he struggled with. And so he started to. You know, when he got sort of like into year three, he was comparing himself with his peers, sort of realizing that he wasn't able to do the things that they were able to do. But it wasn't because he wasn't competent, which he obviously didn't see it as that. It was because the criteria for mainstream does not accommodate autistic brains, often not saying all autistic people, but many autistic people.

Speaker 1: 14:45

Right.

Speaker 2: 14:46

So Harry is very much an outdoors child. He excels with anything when he's outdoors and anything to do with computers, computer games he's really good at. So if he loses at a computer game because he connects with the computer game and computer games being his thing, you know, he's sort of thing that he's really good at then if he loses he takes that as a massive personal loss, like it reflects on him as a person. Okay.

Speaker 2: 15:15

So yeah, so if that happens, and sometimes when he comes home, that can make life a little bit more challenging, sure.

Speaker 1: 15:22

Now you brought up something very interesting. You said that your ADHD tends to pull your autism. Yeah, Now, as you was growing up, you didn't have any of these diagnosed. No, so as you was growing up, you had one side pulling at you and the other side pulling at you. You weren't yet diagnosed. So how did you cope with that?

Speaker 2: 15:44

I think, I think everything else probably where a lot of my dark humor comes from. Okay.

Speaker 2: 15:48

Because if I ever deliver any training, I get people saying that it's like being at stand-up, it's like it's like I'm a stand-up comedian, which I don't intend. That's not what I do Like. It's not what I do. You know, it's not my thing, Because the way that I talk about my life I think I realized that when I talked very honestly and direct about how I was feeling, that other people who maybe didn't share those same experiences, it frightened them. Okay.

Speaker 2: 16:13

And I think I realized that it frightened them. So I think I developed a strategy where I could talk about my experiences. But if you deliver them in a particular way, it actually makes it comical Okay, so other people don't feel uncomfortable, which I guess is that you know it's a type of masking.

Speaker 1: 16:29

Right right.

Speaker 2: 16:30

Definitely masking heavily, because I was the youngest of three and I do think this is a fact of it. Depending on where you are in, the order you arrived on this planet does have an impact on who you are as a person and the way that you perceive the world in yourself and the way that you come across, you know so I was the youngest of three girls and I think I'm the only autistic, adhd-er. Okay.

Speaker 2: 16:56

I suspect one of them is an ADHD-er and the other one probably not. So because I'm autistic ADHD and I think because I was the youngest, I would look at them and copy them. So I think then I probably started to create math sooner than when I started school and would have started doing that. But even within the family, any of my autistic characteristics were not always welcome and I would be told by my siblings to behave in a particular way and I would try really, really hard to do that. You know, I would be like I'll work really hard at trying not to do the things that you told me not to do, because you think it's weird.

Speaker 2: 17:34

I remember being out and commenting on somebody that got like a brooch in their hair and I really liked it and I want to both some people that if I see something I really like, like a brooch or something, you know that I'm just like I need to look at it for ages to like, absorb all of the data that I'm taking and enjoying, right, and so I stare. So then I realized what I'm staring at them. So I'm just saying I'm sorry that I'm staring. I'm staring at your hair clip because I really like it. And then there was, oh that's really nice, thank you, it's me. And my grandma gave it to me. And I remember my sister coming in and going what are you doing? Why are you doing that? And I honestly to her that was really odd that I was doing that, but to me that was something that I didn't think twice about doing.

Speaker 1: 18:13

Right.

Speaker 2: 18:13

I didn't think it was too bad, but anyway, sort of just an example. But yeah, I suppose, growing up not knowing who I was, why I was different, why I kept being told either directly or indirectly, meaning that you sort of start to learn the patterns of utterances and breathe changes in breathing, changes in facial expression, in body language- Right.

Speaker 2: 18:35

The abilities that I have now as a consequence of this pattern spotting, which obviously is quite common among autistic people and neurodivergent people, I developed a really sort of acute sensitivity to changes in facial expression, intonation, breathing, so I can tell what somebody is feeling just by a change in their breathing. And I don't know, it's not like I consciously think of it my brain just tells me, right, that person's not feeling comfortable right now. They don't like what you've said. Okay.

Speaker 2: 19:08

So then I end up going, oh God, I need to like try and clean up after myself. You know, how can I, how can I? What's so weird? Like not like digging a hole and getting myself out, just take the spade off me, but it's like, yeah, those are that. And it's like lots of things that still happen today, I mean, even though I'm aware of them, I'm aware that I struggle with my cognitive empathy. Right.

Speaker 2: 19:29

The only way I can sort of explain that is I'm aware that I struggle with it, but when it's actually happening, I'm not aware of it until after. Okay. If that does, that make sense.

Speaker 1: 19:39

Yeah, yeah sure.

Speaker 2: 19:40

So if somebody went to this site, if there were two non-autistic people communicating I don't know what the social cues are, but I miss non-autistic social cues because they're not on my radar. I have great autistic social skills. My non-autistic social skills are likely better than non-autistic people's autistic social skills to get me Okay. Yeah. So quite often, because a lot of non-autistic people don't realise or appreciate the privileges that they have with their non-autistic social skills and how I don't see some of those social skills, though. A parent could fall out with me and then have a right go at me and I've got no idea what it is that I've done wrong, and not telling me what I've done wrong, they're just having a go at me and they're obviously not happy with me about something.

Speaker 2: 20:31

So my brain then goes right let's go and see if we can find past events where things might have gone wrong. Right. And then my brain doesn't stop. This isn't a choice. Just what my brain does Very good at like I'm very good at solving things. I was often told like I should be a detective. I'm not sure I'd survive that sort of job at home. Yes, because my brain just keeps going and going and going until it found out what it could be.

Speaker 1: 20:54

Right.

Speaker 2: 20:55

Well, it could be this, this, this, here's the evidence and then like on the board, with, like the strings attached to you know, to me, like connecting things, yeah, yeah.

Speaker 1: 21:01

Right, right sure.

Speaker 2: 21:03

So yeah, so we're like, okay, I still can't figure it out and I have to just go. Look, you can't ask them.

Speaker 1: 21:08

Right.

Speaker 2: 21:09

They'll not want to explain. They're obviously upset with you about something you know that you didn't intend to upset them. They've taken it as being offensive. That's not my problem. I can't control how would the people take what I say, and I can't control how they react to it.

Speaker 2: 21:25

These are the new things that I've been teaching myself since finding out about being autistic ADHD. But before that it would have been an absolute show of the not pleasant and lots of ruminating, lots of perserveration and trying to figure out. You know, keep my brain would just keep going round and round and round and round. But it would always be it must be something about me, it must be my fault, and then now I don't do that now. So like rediscovery and post discovery are two very different lives, you know. So does that help at all?

Speaker 1: 21:59

Absolutely so, as you was growing up, let's say the ages between 10 and 16, that's when females are growing up, trying to fit in, going through all their hormonal changes, just trying to figure out life in general.

Speaker 2: 22:14

Yes.

Speaker 1: 22:15

That's when a lot of females will try and fit in and they'll start masking more. So how were those years for you and how did you work through it?

Speaker 2: 22:24

Yes, so it's, yeah, like looking back, I think, sort of towards the end of junior school. I don't know what you call it in America. Okay. So high school is secondary school here. Right, okay. And junior school. What do you call before high school?

Speaker 1: 22:40

That's middle school here.

Speaker 2: 22:41

Okay, right, okay. So the end of middle school and the start of high school. Yeah, yeah, got that right, haven't I yeah?

Speaker 1: 22:48

Yeah, you got it.

Speaker 2: 22:49

And I think I started to realize that it's almost like sort of visualizing the sort of distance between friends because the non autistic people their social skills developing away at that age.

Speaker 1: 23:05

Right.

Speaker 2: 23:06

That's more complicated, more complex. Trying to navigate that as a non as an autistic person, sorry.

Speaker 1: 23:13

Right.

Speaker 2: 23:13

It's difficult because if you don't know that you're different, it's a real shock, Right? And especially the time between the last day of middle school and the first day of high school. So you've had that here. We have a six week holiday.

Speaker 1: 23:29

Right.

Speaker 2: 23:30

And after that holiday you go to this other school. Now, bearing in mind when I was in, this is 1990, when I started at high school secondary school. Okay, Okay.

Speaker 2: 23:40

I actually created a TikTok where I just watched a film that had triggered all of the trauma from that and basically it all came out and I was like I need to video this and record this. Basically, the difference between middle school and high school, so junior and secondary, was just profound and absolute. I mean you could say like a culture shock. It was just like I had no friends. All of the friends that I had at junior school I wasn't with. They did this thing where they mixed the classes up. I think they thought they were trying to be helpful, but they actually made it really difficult for people like me. Right.

Speaker 2: 24:17

Where I ended up. I just ended up in a class with, I think a lot of the girls were like non autistic. It was quite a competitive year that I was in. I didn't see this. But peer pressure to be in particular, to be smoking in the toilets and to have short skirts and to have long hair and blah, blah, blah, blah, all of these things and I was very much like, well, no, I'll wear what makes me feel comfortable. I wasn't bothered about fashion. I was bothered about the sensory aspect of my clothing.

Speaker 1: 24:48

Sure.

Speaker 2: 24:48

The differences that I had just became very obvious, and I think also because in the junior school, so in the middle school, compared to the secondary school, you've got lots of schools coming together all in one school, whereas middle school, junior school, was a small junior school with not many people in and then going to the secondary school, so high school and it being lots and lots of middle schools in one, you know, is that the same as in America?

Speaker 1: 25:19

It can be depends upon where you are.

Speaker 2: 25:21

So yeah. So I was just like, oh my gosh, I had absolutely no idea how to navigate it. Playtime wasn't the same. It wasn't like when we were at junior school, where you just go outside and play games and play with your friends and do the sort of thing you know, sort of playing that you do when you're at junior school, middle school and I go into secondary school. It was almost like some sort of unwritten rule had been announced that this is not how you did things anymore. But I was just like, oh my gosh, I didn't get that message. I just arrived here going oh, this just seems like. When I look back on those memories, they're very dark, very gray.

Speaker 1: 25:54

Right.

Speaker 2: 25:55

I don't remember ever being happy at secondary school, high school.

Speaker 1: 25:59

That's too bad.

Speaker 2: 26:00

And I remember always being on my own. I remember lots of bullying, physical and emotional. Wow.

Speaker 2: 26:06

Every day.

Speaker 2: 26:07

I was bullied the whole time. I never thought telling anybody, I never thought that moving to another school would be an option, not that saying moving to another school would have solved it, because you don't know, it might have been worse, Right, Because obviously they didn't understand what they do now about being autistic ADHD. So it's not like going to another school would have been like, oh, we know that you're autistic ADHD. Sure, it would have been the same kind of expectations placed on me to have non-autistic social skills. And I'm like, oh my gosh, I'm absolutely busting a gut to try and fit in, try and focus on the work that I'm expected to do. To me it's like some sort of you basically throw me out into the social motorway Right and gone right. Try and dodge the cars, you know, try like oh my, it was just an absolute nightmare from start to finish. But the bizarre thing is whether I don't know whether this is because of being autistic ADHD, but it's almost like you get into a routine of going to school and you never think to question anything.

Speaker 1: 27:03

Sure.

Speaker 2: 27:04

That's all I look back on and think I never questioned anything, whereas now, because of the experiences I've had with my own children and realizing quite a lot of corruption behind the scenes and that if any parent who has to apply for a backstage pass which is usually a great thing, well, we've got backstage passes well, you don't want a backstage pass to the local educational authority unless you want the shock of your life and your whole belief in the system to be completely, you know, chopped down and obliterated and thrown in all directions. The basis of it is the amount of lying that goes on and that, the lying between adults to protect other adults, and so because of that, then the protection of the child is lost, right, and I'm just like how is this even allowed? How is this even legal? Just the whole thing generally. But anyway, I digress on something else.

Speaker 2: 27:49

So yeah, secondary school for me was horrific and I've had lots of therapy. I recently had EMDR I can't remember what it stands for now but because I'm, I think, in pictures all the time. Emdr worked for me, whereas before I had CBT Cognitive Behavioral Therapy which didn't work for me at all and I just kept going around in circles with that and a therapist I had just couldn't understand why I kept going around in circles like ruminating and perseverating and repeating the same thing over. You could see that they got really fed up of me like repeating the same thing and not being able to move forward. But that's just how my brain processes things. So yeah.

Speaker 1: 28:28

So with everything that you've been through and your son kind of being a mini me, yeah, how are things going today for both of you?

Speaker 2: 28:38

I realized that basically, I spend my life dealing with the past traumas while also trying to deal with the stuff that's thrown at you day to day, of trying to navigate the world as a disabled person, trying to allow myself to grow into the identities of my autistic, ADHD identity that nature intended me to have, you know, to have access to that. I was denied because of the way the world was when I arrived on the planet. Okay.

Speaker 2: 29:07

And because of the ignorance, I guess and misunderstandings surrounding neurodivergent that are better today than they were obviously in 1978 when I was born. Right.

Speaker 2: 29:17

Also because my children have differences that require additional support that you have to. Then, you know, go through all that. Like I've said earlier, you know about having to go through all the rigmarole of that and the stresses of that and then taking them into school and me having my own school-related traumas and those events triggering my past traumas. And, you know, trying to be a parent, a good parent, trying to do the best for your children while also trying to navigate your own mental health. That has issues based in the past and also with the day-to-day stuff, because obviously, like any emotional state, it's not forever, is it? It's just forever changing, sure. So, yeah, I find that really difficult and just being a parent. So, for example, you know, like this weekend I want to take the boys out. Okay, obviously I want to take them both out together, but I need somebody to help me. I can't do it on my own. I can't take them both out on their own because of being monotropic.

Speaker 1: 30:08

Right.

Speaker 2: 30:08

And because both have very different needs, polar opposite need.

Speaker 1: 30:11

Sure.

Speaker 2: 30:12

It's really hard to kind of meet the needs of one that doesn't meet the needs of the other. You know it's like contradictory.

Speaker 1: 30:18

Right.

Speaker 2: 30:19

And then it means that I feel like a rubbish parent because I can't take them out places, you know, get them outside, and because of that, but also because I struggle with transitions, because I've been autistic and also because I have to take medication. So I take sertraline and I take ADHD meds as well, so they help. But obviously I just have to live in the moment. Basically I try not to plan because it doesn't always go to plan.

Speaker 1: 30:42

Okay, have you accepted yourself now? Have you found a comfort zone where you realize I am who I am, the world is what it is, I've got kids, I've got a family. So have you reached a comfort zone and inner peace so that you realize that you still have to move forward and that you can conquer this?

Speaker 2: 31:02

Yes, I think really from the moment that I discovered I was autistic, I went through a grieving process. My brain just would be like oh, here's that event. From then, add that to the detail of being autistic ADHD and again and again. That took me like two years to process all of those 40 plus years. And then after that it's almost like I went through a slightly rebellious stage, trying to establish my boundaries, my new boundaries. Okay.

Speaker 2: 31:28

It's almost like being a teenager again, but in a 40-year-old body. I'll do all the things that I wasn't able to do as a teenager because I didn't feel able, I didn't feel confident in this, I didn't feel safe enough to do these things. But now I understand myself. I'm like, oh, okay, I'll have a go at this, I'll have a go at that, you know whatever Okay. But then if you've got children as I don't know if you've seen the clip of Michael McIntyre, the comedian of like trying to leave the house with children so like just trying to leave the house without children was like that that Michael McIntyre speaks about, because of being autistic and not knowing it. Right.

Speaker 2: 32:05

And then now I've got children, it's like I could really do with some sort of time machine where I can like the winder time a bit, if it doesn't take us three days to leave the house, so that we can go out and have a good you know, a good time and I not have a meltdown before we even set off. So growing into the shape as I was supposed to be, as opposed to the shape that I was kind of subjected and terrified into, allowing myself to create a set of boundaries that would mean that I could be my authentic self and that if anybody was offended by anything that I did, as long as I follow these rules, I haven't done anything wrong to offend them, because being autistic, adhd is an exhalation, not an excuse that if I do upset somebody I do apologize and I say sorry if I upset you. That wasn't my intention.

Speaker 1: 32:53

Right.

Speaker 2: 32:53

And that person can decide to forgive or not, Not saying that I do anything terrible. But these are like social faux pas that you do because I don't have non-autistic social skills. I have autistic social skills, so you know it can make it tricky, but I think I'm a lot more confident, I'm a lot more resilient. The small stuff doesn't completely obliterate me.

Speaker 1: 33:13

OK good.

Speaker 2: 33:15

I still have those days when I get knocked down and it takes me ages to kind of climb back out of the dark hole again, as it were, but I think on the whole it saved me. So I like how you always say to people like who go on about all labeling this and labeling that, I'm like correct labels save lives, wrong labels destroy them.

Speaker 1: 33:32

Absolutely.

Speaker 2: 33:33

And the label is useful for me, and it's to nobody else's benefit but me, because it then gives me an understanding of myself that I can then, you know, venture out. Does that answer your question? I tend to digress, sorry.

Speaker 1: 33:44

No, that's all right. I think this is great. This has been a tremendous conversation. Your story is just so good and so unique. It's just been awesome.

Speaker 2: 33:53

I always think I'm boring.

Speaker 1: 33:55

I'm boring, I am Not at all the great thing is that you've got such a good story with a different perspective, and that's what this is all about. Anyone can talk with an autistic person, and they've talked with one autistic person.

Speaker 2: 34:09

Yes, absolutely.

Speaker 1: 34:12

So your story has been just tremendous.

Speaker 2: 34:15

Thank you very much.

Speaker 1: 34:16

So now, what would you like to leave us with? Just anything that you could tell someone that just might hopefully make a difference.

Speaker 2: 34:24

I guess, flexibility in understanding that the way you experience the world is not fixed.

Speaker 2: 34:34

You know that other people's experiences are different and that different is not bad, that it's okay to be different and nobody has to be wrong or right, as long as you're safe, obviously, because there are differences that you should be in, like, oh, there's a lion in the garden, that's something that you might want to go, okay, but obviously it might not be so obvious. But to me, as an autistic person going into a setting which, as soon as I basically leave the house and go out into society, I can pretty much say that I feel like I'm in a hostile environment, even if you don't know that they're autistic. If somebody is asking for reasonable adjustments, try to remember that those reasonable adjustments could be the making or breaking of that person's day and that you know I don't really know how to put it into words, boys it's just more about realizing that the sort of non-autistic way is not the only way and that the autistic way is just as much valid as the non-autistic. Does that make sense?

Speaker 1: 35:46

Absolutely. I think it makes perfect sense. So, once again, this has been great and I really appreciate you taking the time and coming on to my podcast.

Speaker 2: 35:55

No you. Thank you very much for your time, tony. I really appreciate it.

Speaker 1: 35:59

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 TonyMantorcom 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.