I'm Shinada Moore, and you are listening to everyone on the podcast, supported by water types who are proven to be fewer than cotton wool and water and now biodegradable.
From fertilises birth pandemic parenting to taking care of ourselves here, we talk to women about their own unique experiences of motherhood, the insane joy and anxious to face the love, the laughs, the tears and the moments that we don't talk enough about.
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So, too, is everyone. This week, I'm joined by an incredibly special woman for Amanda McGinnis to better understand the autistic world that she shares with her three autistic boys. The arrival of Connor, Amanda's first son, has taken her on an exceptional 11 year journey from struggling to reach a diagnosis for her little baby herself being diagnosed as autistic as an adult.
And she now confidently raises her three autistic sons, daughter Hayley, and has become one of the leading autistic advocates in Ireland, supporting thousands of families through little buttons. Dorothy and the autistic educator. This journey is transformative and so full of positivity and pride, but it also came with terribly low mental health days as Amanda describes the suicidal thoughts she experienced at the height of a period of depression, which may affect listeners.
I wanted to thank Amanda for her honesty in discussing this with us. As without opening up, we push those going through these feelings now even further away. Talking is the solution. So I've included a list of support services in our show notes.
Amanda, thank you so much for joining us on the podcast, and it is lovely to see you this morning. And as I look out at this crazy storm that seems to be happening here at the minute, I am reminded of a phrase that, look, we're all we all here right now, which is we're all in this storm together, but we're all in different boats. And and I think that's especially true for for you. What's going on in your boat right there.
Well, thanks so much for having me on. It's just I can't believe I'm even on the podcast because I've listened for so long. And even at night when I'm off with my cousins, I do just switch on your podcast and just take the stress out of the night. I'm just awake. Thanks so much for having me on. I suppose the storm for us, it's been a bit of a roller coaster since it's almost a year now, unbelievably, but it has been a bit of a roller coaster since last March.
We have obviously had schools closed and opened again to those families and for all families, it's been really tough for the folks in our situation. It might be a little bit tougher because in our household we have my daughter Haley, who's a teenager, and then we have my three little boys, Connor, Jack and Max. And each of the boys are autistic. And up until last week, two of the boys were not. But the baby at the house start to try and speak slowly.
He starts to suppose you can see daddy. Now, what was he saying? He says, good night for good. That's amazing. So it has been, I suppose, as I was thinking about a storm and has been to spend a lot of ups and downs. But the main part for us was just trying to send the boys back into a routine, because when you are autistic, you do rely on structure and routine at home and at school.
And they had been so used to go to school every day and they really relied on teachers and. And then suddenly we are told that he was gone and three, hard to explain to people that rely on that routine, their routine suddenly changed.
So take us back, Amanda. So you had Haley. So Haley is neurotypical. And and then Conner came along and explained to me as as a mom who is, you know, who's already had a baby and were terrible at this in the comparison game of what age did they do this and when did they smile and when did they roll over and did they fit into the same baby grows at the same time and all that kind of stuff. So what were the first kind of signs for you that something needed to be looked at for Conner?
For Conner? It was immediate, to be honest, because I'm autistic myself. I notice patterns. That's just the way my mind works. I noticed passions in people. I noticed passions and behaviors. I can my mind is really visual. So I can you could be like, oh, I can think back to that time, but I can actually envision that time nearly as if it's happening now. So when Conner was born in the hospital, what was very clear to me straight away was that he was not like his sister when she was born.
He would have little baby to try and comfort them. The kind of nerdy mold into your body. He wasn't like that at all. He was just very, I suppose I would say singular. He couldn't keep his bottle down. I don't mean to the point that he was spitting up. It was projectile projectile vomiting out of him. And he couldn't sleep at all from the hospital. He never slept all night for about two and a half years.
And that started in the hospital where you know your stuff, you're in heaven, you're thing, you know, some baby sleep those first few nights in a hospital and some don't. Bacani never did. And I just remember he was it was just I can't really describe it that I knew straight away there was a challenge. And I remember bringing that to the attention of the nurses and the doctors. And they were, I suppose, for them from their perspective, maybe they just thought I was exhausted from having a baby or whatever.
But I was I think now it was because I could see I'd be very visual. I could just see there was something going on here that wasn't very typical of a young infant. Again, I'm one of eleven, so I would have seen a lot of babies. I'm the oldest girl and I would have helped my mother raise a lot of babies. But from the very beginning, it was obvious to me that I was having challenges. And as I said from the very beginning, he didn't sleep.
So for the next two and a half years with Khan, he didn't meet any of his milestones. He never learned to speak. At one point he could say, Mama, dad, and I know it's not a word, but he used to say Botten. And that was like the last thing he ever said or cry.
And I just remember thinking, I wish I had recorded his voice because so obviously he can't speak now so that you forget. But he cried. But it's just so very raw because obviously I have four children and three speak. I would cut and you always hold out hope that. You always hold up and hope that we will all speak, know the baby starts speaking last week and it was so bittersweet because he can speak more than his oldest brother. You know, there was a lot going on when Connor is small.
And I think it would have helped me is when I had gone to different sorts of professionals and asked for help and said, you know, my little boy, he's not speaking. He's not meeting his milestones. Like by the time he was a year, he still couldn't sit up. He couldn't hold any weight on his legs and he often interact. But all he was for a little while, he smiled.
But I noticed. What color was that? If you were trying to communicate with them or get his attention, you really, really, really had to be very focused in getting his attention. And again, I wouldn't have known back then was that my little boy was autistic.
But I just remember it was exhausting because, hey, I could just say her name or when she was a baby, I would hit play with her smile back. And you know what you'd expect with babies? They're interactive, fun little beings. And Connor was lovely and so fun. But for Connor, like I really had to, if I wanted to get his attention, I really, really, really had to work really, really hard to get his attention.
And again, I know now that was because he was autistic, but I didn't know that. And I just hope that as parents, I would just say, why can't I get this right from why can't I talk? Why can't I help him to walk or I can't do all the things first he should be able to do. And I didn't really have choices because I didn't know, I suppose, when he was autistic and it didn't matter who it was or where he went because he was an extended stay.
He's very tall for his age. He's very well built. He looks like stronger Alibaba.
And we were told, oh, you know, I suppose we probably thought maybe I was just overdone, you know, with too little little people on a year between hating Connor.
So maybe he thought I was overdone or exhausted. I was just but I was hyper aware that he wasn't as milestones. I remember one day I played peekaboo with Connor and he was eventually walking at this point and I was hiding behind the curtain. And he just didn't even notice that I was behind the curtain. And I remember looking at him coming from behind the curtain and he just walked off like I was invisible and I just never got. Why doesn't he know the other way, baby?
To be like, oh, you're going to be coming back. You know the way to be really attractive. He didn't even notice. He didn't even notice, he just walked by and I just remember feeling so bad, I can't help like you might be such a bad mother.
And it's just I think that that's there's there's a few things in what you've described there that I'm hearing so often, though, from women, which is one you knew in your gut. Yeah. You knew in your gut. You the mother, from the moment you met your child, you knew something that the experts couldn't see. Yeah. And I and there's such a connection. And if anything, I'm learning from these episodes in these conversations is like never silence a mother's gut instinct.
And the other thing is we place so much blame on ourselves, that 100 percent. Yeah, I do. And I would hear that from, you know, through my social media that I'm so lucky to have so many lovely parents that I talk to now every day.
But I would know I would hear that every single day. Every single day.
I'm contacted online by parents that felt like feel like feel now, like I did 10 years ago, like I know now. Different 10 years ago. 11 years ago.
I just because you go to the expert and you say, this is what I'm seeing and they're saying, no, no, no, it's just your perception, they're perfectly fine, you know, they'll meet their milestones and you're gone. OK, OK, maybe maybe I'm wrong. And then you doubt yourself and you say, well, if this person who has all these letters after their name is telling me that, no, no, no, it's just me, he's fine.
Or, you know, I have either been honest was I had not people I would have known my life and I would have said this is what I'm seeing. I'm really worried. And one person said to me, no, it's not it's not something wrong. It's how you hold him too much, because I'd be very hands on money. And they said I was holding them too much and I wasn't giving him the chance to develop. And I know the person said it was your undoing because I'm very hands on money.
And I was like, oh, God, yeah, it's was pretty horrific.
But again, if someone had said, OK, well, what do you think?
Maybe if someone came to me now, I would say, OK, so what I would tell you now is could you record what you're seeing so you could show this to whoever you go to write down on and you're not saying so then you can show it's not just a mother coming in because like me, I'd be very surprised. You can tell I'd be very emotional about my kitty. So if I was going in, I'd be trying to relay all that information.
And again, because I'm autistic, I would struggle socially to communicate verbally, whereas I would be much better in Britain or in video to show them what I'm seeing, because I find it very hard to describe.
But that's what I would tell moms. And I have to keep a journal. Talk to me any time. If I if I'm not aware of this kind of issue that you're struggling with, I can point in the direction of some of the calm. But the most important thing that would have helped me if just anybody had listened because I spent that first full year of his life. Absolutely. In the depths of despair, what it was like two years, really.
And I became very, very depressed to the point I ended up eventually suicidal because I would be very capable in my day to day life. There's nothing I can't teach myself or there's nothing I could do. Before I had Conor, I was training to become a solicitor, and then I went off and on maternity leave and had gone. And that was that. I knew I wouldn't be able to go back to work because his needs were so great.
That I knew he would need his mom and I wanted to be there to help him, and I didn't know that I could trust somebody else to take over my role, but also because nobody could really see what I was seeing. And I thought, I have to give up work. But actually, as it happened, I could never go back because within that first year, he was eventually diagnosed, as they used to call it back then, having autism.
But he's autistic. But even then. Then I had a boy with the diagnosis, and I still don't know anybody who had a child who was autistic or a child of mine would say a child was mine that was autistic. I had nobody to relate to. So I felt that this is now back in the days of dial up Internet like it was 10, 11 years ago. But I still lived in the country then, so there was no Internet.
And I remember one day I eventually got on my parents dial up Internet and I searched for support groups. I think I think actually the doctor actually did tell me Connor was autistic and she told me to look for support groups. I went and I looked for support group and there was a support group in the area and I got the phone number and I rang and it was related just more than myself. And she said, oh, no, no, no, no, we had to close that down.
The women had to be home to put on the dinner for the husbands.
And I was up and I was like, OK. And then that was it. And I didn't know any knew the person who had a child who is autistic for another year and a half.
You are not still only 10 years ago. Yeah, well, I left this idea that that was.
But not. We're not talking back in the 50s. No, no, no, but that was all there was. There was nothing there wasn't even that. There was nothing so. I just I just I just remember feeling so worthless because, again, nobody really. And just not this. Thank God. Autism awareness, understanding statistic as I am. There's so many great things out there now and so many great advocates and autistic advocates as well. But back then, if the if that existed, I didn't know that.
So I spent the next I suppose, 18 months after he was diagnosed for underthings, was diagnosed. He would have been one of the youngest children ever diagnosed in May or with autism, I was told, because he had been I suppose the way Conner ended up being diagnosed in August was that I had to have an aunt. And she had said to me that because I was always bringing him into the hospital, because I knew there was something, I didn't know what it was, but I knew he I knew he was struggling and I didn't I couldn't get anyone to listen to me.
So she said the next time he was in fear because he has a he has about issues associated with autism. And I said the next time he's in hospital said you're just going to have to say to them that if they don't listen to you this time, that you're just going to leave them there. They can do whatever they need to do with you, but you're just going to that's what happened next. So he called Prolapsed, and I brought him to Casti with it.
And I at that point I was so depressed and I just cried and cried. I'm so, so depressed. And he just said, if you can't tell me what's happening, I can't sit at home and you can do whatever you need to do to be with you to help, because nobody's listening to me, because there's something wrong here and I don't know what it is. He was kept in hospital all week, I don't know. But he's been observed for autism.
And I was being I know now because I've been through three times, they're asking me all these different questions and all these things about his development. I should have, let's say, three types of behavior, concern. And of course, he did because he was autistic, but I didn't know. So I was describing now I know repetitive behaviors. I was describing sensory challenges and sensory differences. I was describing stimming. But I know I was just describing this was kind of this is what you did and all of that.
And by the end of that week, they came in just, oh, my gosh, some of these social justice consultants do. And she just said, you know, you should tell me all about what the questions are for and all of that.
She said, you know, your boy is autistic and that's why he's been struggling. And she actually apologized because his fired he wasn't even a year old with such a big kick filed because I had. Bring it in. Bring it about.
You just said, I'm so sorry. I should have listened. And you come in so many times. And she said, But your boy is autistic. And I think no, I think the phrase was he has autism. Thought that was the phrase kind of pathology. And I just said, OK, what does he need for that? So it is said, well, just my head, I was like, well, just get the medicine you might need.
An operation was so ignorant to everything. And she just said, no, it's a lifelong developmental condition. And I was just like, well, that means forever, you know, and I'm an intelligent woman. But in the moment, I just remember in in a situation where you listen to someone talk, but you feel like you're really far away from them, because I just remember my head feeling like it was being pushed out to the ground.
So it's going to shock. And I just remember I got and I just looked out a card and he wouldn't have been he would have kind of been smiling. I would be forced to have him smile at the baby. I treasure them because there are so many of them. I just kind of smiled at me and I was like, oh, my God, I can't, you know?
And I just thinking now or back then, I remember thinking that was probably his way of saying because he can hear and he can understand for the most part. And I said that was him saying and now, you know, because you're trying to tell you.
But now, you know, we're went home and I told my husband and I told one of the few people at home, one person said, well, that's your own. Do you all Helderman, you know, things that would be really helpful if you know, if they said it to me now, it's actually you actually. It's a neurological you know, I could tell you. But back then it was the words that I was trying to it was the biggest word had ever heard me again.
It just overtook my whole life, not as in the word itself, but it overtook my life for a good few years because I was trying to be searching that after that.
But it's essential you on a journey to now be one of one of the brilliant advocates. Oh, well, you know, and the support that you now pour into the lives of parents that are reaching these diagnosis, you know, like it's terrible to say, like you went through you went through this in in such a vacuum and all alone. But you're you're making sure that nobody's going through that now, you know, but that's that's how little buttons come about.
Because then when Jack was born again, I noticed right away he wasn't falling into line. I could see it visually. It was due. And he was he was on par with Conor. And I was say, Bernard, my husband, I said, you know. I think Jack is autistic kids with autism on the brain. I know I'm telling you, this father is autistic. I said I see it in him. So I wasn't nervous or felt it was upsetting his my son was able to be autistic.
But if he was my son and if he wasn't, he was still my son. You know, I felt incredibly blessed that, as I say in my mind, had chosen me to be his mom because we had struggled through so many things together myself and gone like we spent. The first two and a half years of his life driving at night time because you couldn't sleep, and I know now it's because he had sensory processing disorder and he was autistic.
But I didn't know any of this at the time. Like he was like even when he was diagnosed, nobody explained to me what sensory processing disorder was. And nobody said, and your child may not sleep at night time like he didn't. I mean, from the very beginning, I'm not sure that he did not sleep at nighttime at all. I learned from that emotion, helped him sleep. So I used to push around the house at night time in pushchair and actually the Moesha would sleep.
But sometimes I used to get blackouts because I was so exhausted. So I was totally exhausted. But again. When Jack when I was pregnant with Jack, it didn't bother me because, I mean, it did bother me, but it was to the point the opinions of other people and the judgment I knew they would place on my kids, because if he was going to be autistic, he was going to be seen as different in other parts because Carter had been treated so badly when he was diagnosed.
I know. When he come into the stores after Connor, actually. And how people here hear these things, you see, oh, my God, I heard your song about your new CD. Looks like it was only a couple of days after he'd been diagnosed last year. How do people hear news that how you know, because I'd be very quiet and private and I just didn't know how anybody knew any of this and I thought I was going to fail if I can help or, you know.
Do you think so? Yeah, that's what I would naturally say.
And she said, oh, well, I just said, ma'am, at least he can walk. He's not a complete vegetable.
I was just like a man. But that to me was my first introduction and understanding of how people perceive people are people and their children with additional needs is different in order that it's OK to speak. So we open up the person. So for me, when I was pregnant with Jack, what's the age difference?
Donna is ten, Jack is seven and so three three years on.
So he was well diagnosed. You sort of. I knew my way. Educated yourself enough.
I know. And yeah. And I'm at this point, I had a few friends who had autistic children, so I felt I was empowered because I had a support base there and that made oh my God, such a difference. So I had Jack then and again. I went about having him assessed when I could see he was autistic and he was obviously autistic. And I just remember then when Jack was diagnosed, I just remember feeling like, do you ever have the sense of urgency?
I was like, I need to do something because I'm not the amount of three years ago that was suicidal in cobwebby.
I demand to know that knows I still have a lot to learn, but I've learned to loss it all. So I something kept coming back into my mind about when John was small and here he was. What we had a lady come into our house to visit. You know, we were very well and Katie was playing and she kept calling her because I called them.
And then Connery's in the corner, I think stimming a camera who's doing what would be very typical of Connor stimming and whatever he was doing, that kind of sensory behaviours.
And she was like, and there he is there it was very obvious that she was like, oh, look, what's he do in my head? He's got his eyes like, oh, he's a little wooden and was just dead silence. She didn't go over years. And then when Jack was diagnosed, then I thought, you know, I just had a sense of I think I could help people. I don't know how.
So I thought I going to set up a blog and I want to call it the opponents, because whether you have special needs, you don't whether you're different, you're not everybody should be treated with respect and dignity and seen as what they are, which is just especially children with human beings. And you should give them. You know, the same love and support as you would, whether they had additional needs or not. That's kind of how little come about that, because I didn't want to have any parent.
Like I had always felt after was before he was diagnosed, I just felt lost alone and I thought if I can support if I can support anybody and help any parent not feel suicidal or to the depths of despair that I had felt, that was that's what I was going to do.
And now you're doing it again in supporting families that now are trying to to run home schools in the absence of essays. And I think that's a wonderful initiative that you're doing.
Yeah, well, yeah, I just that's kind of started off as just a blog talking about my kids. And again, I've always been very interested in education. I've always got my husband. When he first met me, I had a room in my house that was basically like a classroom, but it was full of, say, whatever again took place to the point of autistic. I would have special interest. My special interest my entire life has been education and teaching.
I should have actually become a teacher. And I tried to become a sister because it was my dad that was like, you know, because he is that he has built the company.
He's a great corporate lawyer. And I was like, know, maybe I'll do it also to kind of law for my dad, but I want to become a teacher. But I thought, you know, if your dad was like, I got do this, I got to become a lawyer, but I should have actually just become a teacher because that's what I wanted to do. I wanted to teach. But then. I suppose I threw myself into my own little ones and out of that we kind of created a whole room in our house and it was only then through my social media, I realized that other parents were interested in this.
And I started to share that with them online. Not much, because I'd be very shy, but I shared some of the videos. And again, I just found parents. Well, how did you how did you get your child to sit at the table? Like my guys running around through lines like, oh, we just need help but regulation and a box that was like, oh, that's this. And it just developed out of us. And then over the pandemic.
I started to share way back in March lots more individuals that information and posts that I just, I suppose, take for granted that I know and you assume everybody knows, but obviously they don't know if it's not their day to day life. And again, it's been my special interest my entire life. And then just recently through plan in Dublin, the parents, that Autism Network, they asked me, could I put on a webinar to free webinar just for parents?
And oh, my God, it was just oh, my God, I couldn't believe what happened.
It just exploded everywhere. And I've been asked to do the same, kind of along the same lines of talks to support parents. And it's been fully booked every time. And I just say to me, I'm just me. So I don't understand. Not I'm not like I understand. I have a fall on my mind, but I'm just I'm just me. It's not a it's not put on or it's not a there's no agenda. It's not to help people.
And that's why what you're doing is so phenomenal. You know, because you're zero, you're making sure that that doesn't happen again. That's why because I think and I think I knew in December. I suppose maybe felt very low in their life or very lonely. You never once you never want anybody else to feel that way. And I think that's what keeps me grounded because. I suppose. You know, I ended up in eBay one nice where I go, that is both.
I just got a call, I just couldn't do it anymore because I spent the better part of the three weeks before he was a year old, and I just remember I couldn't feel any lower or any more invisible or I could keep the weight off my shoulders. I just felt desperate and nobody was listening to them. I just thought, you know, I think I've just got to go. I just remember feeling so exhausted. I just want to sleep forever.
But God was with me, and obviously I would never hurt my papa.
And I just remember he was on my shoulder. It was the middle of the night because I went to university all the way. And I just always associated with is a happy place. So I just felt. Bottomless. I just thought, I just need to sleep. I could just sleep. I feel better and I didn't even mind if I never woke up again. I just want to sleep forever. So tired, so tired of after I remember Congress on my shoulder.
And I was very logical to remind everybody into the water. And I said, well, OK, I have cutters I need to put of somewhere safe because someone needs to know he's here. And I thought, what if I leave him in the car? So I'm not O'Connors it or they might not even take my car. My dad bought me college. I have my Micra and I just thought if I leave the car he could get called, can't speak.
So he can't tell anybody who he is. And I thought I could leave a note and they just really sound really strange. Now I just read like a drop to Millstreet Guard Station but then they to see me run away or I never got time and I was just really afraid. Logical. How am I going to do this now and then I thought no, I just couldn't figure out how I was going to do it logically and then just for time.
So we're safe. But I remember I was on my shoulder, I thought, but it's back and it'll be like the city was already on the bottom. And I just my friend said something like Ma or mama or something. And I was just like, oh, my God, did you just hit Mom?
And I was just looking at him and I just said I said, OK, we'll go home. We go home. I don't want to. You want to leave them in the car? Got to do. I just never said who can go home. And I remember I cried all the way home with the car over. All right.
Thank God he stopped and he got his news back to sleep. And I just remember they got home. I was on the way home. I remember I just thought I could drive it to a tree or I just. No, I just had, like, a very logical. It just makes sense now because I would never but I was so, so depressed.
I remember what I told my husband, and he was I was shocked. And he was like, you need to get help. And, you know, and I did I went to my GP and I started to feel better than because I just because I didn't tell anybody that part, I could tell them about my son, but I couldn't tell them I was struggling. I wanted to take my life. But once I did start to say it, I started to feel better.
I know what helped me then as well was I had my best friends that are still my friends this day, Carolina, Virginia. They never left my side, even though they didn't live mayo anymore. Like my friend Caroline would come down. She was training at the time and she would come down every couple of weeks and just take off the house and say, there are the husband. And I said no to Qatar, which kind of at the time we used to just scream daylight.
And he was really little she to say like Mandy to clear out of the house, cell phone was working around the clock and God help him when he came in from work. I just feel like I need to leave the house, take over. And I think really she's to just come in and take it out of the house. But I come back like do not come back into this house to have three of Ukraine. I'm locking the door. And I'd come back and she'd look correct because now I've done my good deed.
I see you again next week, you know, so that kept me going because I live for that day just for her, because I wanted to get her out of the house and that's it.
And I love that about women. And it's something that I'm so sad can't happen right now.
But then online is helping each other, though, as well, because even now know, people say I support them, but I feel so supported by like as I said to you earlier, I listen to the Everyone podcast, but I read that I just tell you what I listen does this is the one with allergy.
The other day it was actually hilarious, both because I was like tons of it will have three. I was literally the other day I was like, listen to podcast. So I had I was like, oh my God, if you just want to guess or like comedy show, nobody ever so funny or like I listen to the one with Tyra, like how inspirational the navigation coach like.
So for me online it could be listen to a podcast. We could be talking to another parent online. It could be you know what I love about Instagram as well. It's very interactive. You can chat to each other on everyone's blogs and things, you know, or I read like I might go onto your page. You sure? Great. Pause button from parents. And I read that like, wow, you know, it puts everything into perspective and it helps if feel grounded.
That's life. You love you and you don't feel alone then. So keep an eye on the pandemic. It has been hard at times at home with the little buttons, but I'm always consciously aware it's very hard for them to as as children trying to get through this pandemic. But it's great then to be prepared to go. Does anybody have this experience or can anybody or a lot of time I get contacted and asked by parents, could I share something on my stories or on my green and ask for help for them?
And I do that all the time because I just would never want anybody to feel like I felt ten years ago to the point where I was as I said, I just want to sleep forever. I don't want anyone to ever feel like that. I want everybody to know there is somebody there. And if it's not me and I always say that if it's not me to help you, I can direct you without doubt to the person, the kind.
And also what I find great about online is there's so many teachers, therapists, Sneads. Oh my God, there's so many people online giving of themselves so free day. And that has helped me as well. So if I'm struggling would say with support of the boys, I can just pop on someone's blog and they probably have the information there that I was struggling with, you know, words ten years ago, I was just hitting the record because I didn't know anybody and I didn't even know where to look, whereas now you just type it.
And it's not like my dial up Internet ten years ago now it's like it's on my phone. I have access to a great support network of women and men around the world on my phone at any one time. Like it's an incredibly. I suppose it's a reassuring feeling reading is what it is, you don't feel that loneliness as much now you have your moments. But for the most part, I just as I just said, I don't even know why I have a blog because I'm nobody but to me, having other parents there to chat to every day, that's what keeps me going.
They say I help them. I'm like, no, you have me because you don't. I think you've been thriving. You don't forget those feelings.
So how much stronger did you feel by the time Max came along and was diagnosed when Conner was diagnosed? Oh, my God, I was like a different person.
It was actually Max. Again, what my husband did was like stop was like before Max was three months old. I had said to my public health, I said, Max is autistic. And I said to my husband, he was like, you what? I said, Remember the last time you said that I just felt like a different person today. I, I just I just I just too I think because things have been so hard with Conner was small, I can never lose that feeling.
That's what keeps me grounded because I'm just myself all the time. But also I felt I could go back to that woman and say, you know, Amanda, look how far you've come. You know, you're out of there before anyone around. You can tell you this is what we need to do. My body. And we started I started working with Max. We started to do aute and regulation. And, you know, he's talking that.
Sure, that's absolutely. That's his own amazing ability to research talk. But I knew what to do. And I have a room in the house, a whole room full of every type of resource, every type of therapeutic thing they could imagine because again, I am ten years down the line. So, you know, Vox popped off his head and was like, I'm autistic. I was like, I've got your buddy. Don't worry. I know what we're going to do.
Connor devastated me because not because of a diagnosis, but because I didn't know how I was able to help him, not because his label or like I'm autistic again. I only found out later in life. But it makes total sense to me as an adult. But it also helps me understand that I wasn't upset about him being autistic. I remember feeling upset that I knew and I knew and I took him to pass that he would be judged because he was different and it would be known to be different.
You know, the kind of way it's like a target, because unfortunately, even now in twenty one, twenty, twenty one, it's hard to believe this, but even in twenty, twenty one being different and being seen as other. And it just even have to be autistic just for being different in whatever way that is. You become a target for people that don't like difference, that wants everybody to be uniform and the same as my kids. It's like a rainbow in the house.
They're all so different from each other that we I'm autistic with three boys, autistic, we're all so different. And then I can see my daughter. Haiti is very like my husband. They're very like not the we're not really rich, but they're just very difficult. And life is grand.
You know, where I'm like. What's happened here with that and why is this because I just need order and routine, but I know that about myself, so I try to kind of manage myself in the sense that I'm not upsetting anybody else around me because I know how I am. But then I know for my boys, they rely on that as well. So because of that and who I am, I could put that structure in place for them to make it such a normal part of their day.
But I'd say the house then I suppose that's the fear that isn't it? Because you see all these horrendous, we'll say, four older kids or teens or young adults, they're targeted. And like that's my fear now is for when they're older because I'm their mom. But I have to let them loose and go off live their lives. You don't have to let go when they're ready to go. But then I'm afraid of the big world out there because you don't know.
I mean, there's so many amazing advocates now, but there still is that stigma. When I was diagnosed, I wasn't really going to say to anybody just because it's not a big it wasn't a big shock to me because.
Tell me more about that, though, because as you said, you were later in life. Yeah. Was it I assume it's because of the amount of education you learned about the boys. You started to recognize things in yourself.
Yeah, well, it was more yeah, it was definitely that. But it was also Jack is a carbon copy of me as a child and I will do now. I'm like, oh my God, I remember getting in trouble for doing that when I was small, but it's just typical autistic behavior or, you know, the way he is, characteristics, whatever you want to look at it.
You see, I knew once again it plays to the way my mind works. But again, once I started to research, once I knew I was autistic, I started to research. And I just think that's like me and I do that. And that's like me. And a three of the times over the last ten years, I went to access an autism adult assessment and over talking to autistic females online in our. The autistic and I said I told the truth.
I said, I feel I might be autistic. And they were again so supportive and so helpful and they gave me the details of who they went to and whatnot. And I was going to go. But each time I stopped myself, I said no, because over those three of the times, I was so fully aware of how my own kids were being treated or seen because they were autistic and I'm online and I could see, you know, some of the attitudes towards difference and what my it is really to me, it's just anger brings hurt.
And I just think to these people are amazing. Being autistic can be the kind of thing. And then this time around. Before Christmas, well before Christmas, I had the opportunity to go for an assessment again and I was going to go, but my friends online, I said to like three people and I was like, oh, I don't know. I got back out there, like, go back. I'll go for this time to back out.
You're going to be so glad they're not autistic themselves. They're like, go for it. You're going to be so glad you did. And I was like, OK. And I told them inside of me said, well, how can I run from a diagnosis? But I tell everyone about my kids, you know, they're going to say and then, well, how can I teach them to be proud of themselves if I'm hiding this part of myself that I know I'm autistic.
I just need for my own clarity to talk to an objective expert professional in the field who can tell me if I'm autistic. So I went and actually it was the best thing I ever did because I've spent my whole life feeling out of sync with everybody. Like, I'm very able academically I can teach myself anything. But when it comes to socially, I find it very difficult because I'm not I don't pick up on social cues. I'm not you might think I don't know.
Your said you're a great speaker. I'm not a great speaker. If I was have a conversation, I'm just like, when do I speak? Do not speak. What does that ibro movement mean? What do I stop talk? I don't know.
I go off the ramble like I call it the ramble.
But after talking to the psychologist, he just was so little things like I have never met anyone like you before. I don't think I'd ever meet anyone like you again, he said. The way your mind works is he was saying there was only a few people in the whole world that they process information as quickly as I do.
And I said I can offer a good speaker. And he was like, But it's because your mind is working so quickly that you can't get the words out.
So simply because it comes out neither as long as you probably know his spiel or it comes out that I'm like, oh, I don't know what to say, because I it's like he said, my mind is like a computer and a process and so much information all the time. But to you, I don't know how anybody else's mind work, but I'm at all times I can see this sounds very strange. I'm sure like visual imagery, if you want to call it cinematic.
But at all times I can see different things playing within my mind at all times on different things, like I'm working on a project at the moment and like that would play in my mind all the time as I'm trying to figure out how to do something and it breaks down and breaks down the pieces back together. And then I'm thinking about our conversation and then I think about something I'm doing for Max. And all this has happened all the time.
And then I'm trying to speak. But what I found from him was that he had such a positive, empowering way of talking to me about who I am and how I am that I walked away from that assessment with the diagnosis. But and it's not about ego or just about I understand myself and I don't feel out of sync anymore. I'm in sync. Sounds like the band, but I feel like I'm in sync with people like me. I know I'm not the same as you were different time.
You're a divergence in your neurotypical. I know that, but I feel like I'm happy in myself and I know you're happy in yourself and that. And we can coexist. We don't have to be I don't have to try and be like you. I can just be me and I don't have to feel bad, but I do. But I'm not great conversation and social situations. But I understand now why I'm not. And I don't have to now say, well, why couldn't I fix the part myself?
As a child, I feel bad for the little me. That was always like rock n roll. This is what you should do. And you say hello. And then then you say this like nobody really did any of those things. But that's what they did, because I was trying to figure, because I'm very much I'm very analytical, very logical. So I go, well, if I can't figure this out, I've got to write it down.
And then I want to know, like, oh, my God, the things I did socially as a teenager, I remember I should have known, but I didn't get it. Like, one time we were. Oh, my God, my friends listen to this. And I'm sure she will remember we were all supposed to go out there again. My mom used to like you never heard this. My mother used to push me to go away because I wouldn't go out.
I'm like, I'm not gonna do it. I you know, I didn't understand. I was autistic. I just I loved the idea of going out. But it was too overwhelming to be to be there because I never knew what to say. I usually go daft. I didn't even know I had a lot to my friend. One day cannot be strip. Let's keep me warm, you know?
So I thought if I'm lucky, all my sisters are beauticians and hairdressers.
Anytime they see me, I'm really fearful because they're usually trying to fix some kinds of probably butchy conundrum. I didn't even know I had, you know, I would go into that. But on this one night when I was a teenager, we were going somewhere and I was like, what do you wear? Because I was like, I don't know. Like I could turn up and just be comfortable, wear something comfortable for like a teenage speak that obviously meant something tight.
And you look gorgeous because there might be boys there. I turned up like with a woolly jumper. I mean, like sheep woolly jumper. I didn't like I could have passed off as a sheep with a big fleecy thing, pair loose jeans and all runners because I was comfortable in them.
A shoe was a quality where they're all like skirts and I don't even walk like a dog person clothes. And I was, like you said, comfortable shoes, like a zebra, go to a disco.
And I was like, oh God, I had to go out where the my mouth. Are you sure, sure you want to as a kid, which she's uncomfortable. I like Mom. I don't know if I told you was like, oh, man, you don't wear that. And I was like, it's comfortable. And then I was roasted because it was just gold.
And I looked like a portable sheep because I was like, that's like, you know, I just missed out on so many things I should have been aware of. But that's an example of the social that I didn't pick up on the cues. And younger a teenage person would have known some kind of skirt topper pants combo. I turned up like a sheep.
You literally today and I just keep going.
Oh, my God. Oh, my God. What the so many things like.
But maybe if the world didn't take itself so seriously, that's the other way. Yeah.
And we just accepted that. That's your version of uncomfortable. Comfortable is why you have to be so self-critical and judging and it's like.
And does it help you to know I suppose like where your life is asked? Does it help you to to look at your sons and think like they will be OK? Yeah. Things are moving in in a better direction. Yeah. And understanding them as you do, because I imagine that gives you a very precious insight into how they feel and not all parents would be able to do that.
And does it give you does it when you were given that diagnosis and you said, oh, I'm I'm on their team, I'm with one of them. Yeah. Did it give you greater.
Yeah, it brought I just remember feeling calm. I know, I know other adults and online that are Irish and they haven't said anything. They've said it to me and said they're autistic to anybody else. They feel it's like a waste carrier. And I totally accept that. I mean, it's everyone's own journey for me. It just lift the weight and the guilt off my shoulders. I just remember I just said to my husband, I was very upset, said, oh, my God, they're going to struggle because of me.
They're like me. They're going to struggle. I had this guilt and he said, no, Amanda, if you think of it this way, they're incredible because they're like, you know, when I see like Khan has, oh, my God, he's the harsh of his age. He will just he's nonverbal or not speaking. But like, if you're not freedom of come over, sit beside you just on. So he can't say you care about me or you, but he KOVR-TV beside you or Jack could be like what you said to me, you know, and that's like I wish I had just said when I said what people were saying.
What do you mean? Like I said, I don't understand what he'll say it. And I'm like, Oh, you're so courageous because I spent thirty nine years going, what's the big I mean, how do I answer that? He's like, you just said what you said to me, what you mean and go, why did I just say the same words when I was a child. And I would just add more, you know. So he to me is like his own little trail blazer for me that I'm going, oh, I get it now.
You know, I understand this is what I should have saved myself. So he's teaching me as much as I'm teaching him. And then Max then it's just, oh, my God, he would literally run a mile a minute into you to give you a hug. So you're just like, you know, so they're all just to me. Now, when I think of it all, it just makes me so happy that I understand myself. But as a mom, I just think it's wild that I've started where it started so lonely and afraid.
And I've come full circle and I understand myself, but I understand my kids. I have my amazing daughter and husband. And then I have so many lovely people that support me online. But hopefully I can support and return. You know, it's just I had to but I would love to go back and tell you all not to not to be upset and not to worry because of I wouldn't believe believe it in years to come. You would talk to thousands of people online every day, even though I didn't have one person I could talk to eleven years ago about it.
Like it just feels like a movie. Like it doesn't seem real or not to me.
Anyway, it's a wonderful story. And I'm so I am so honored that I got to to to bring this to other people's ears today because like your.
How how you talk about the joy and the magic in your sons and not just the challenge, I think is really special. And, you know, I think if we all turned such traumatic experiences as the as the depression that you experienced into something positive that we can, you know, pass on and take take our own challenges and learnings and put it towards helping others that are going through it today. God, wouldn't it be a better place? And that's what you're doing.
And I, I honestly can't thank you enough for doing us. And I know that you're helping thousands of parents, especially right now, when so many support systems have been taken away from them. And and it's it's a really generous thing for you to do because, you know, you have your hands full. And it's a really generous thing for you to do to help everybody else who's going through.
Oh, well, I just I just can't I just I just don't want to ever leave anybody behind, like, not that anyone had left me behind back then because I didn't even know where he was. Like, I didn't know I was about to start off on a journey with my son. With that, we're going into this new as I said, and I always say, boys, in a sense, help to lift what essentially was like a veil from the front of my eyes to see the pain and the suffering that was actually about to happen in our own lives.
But that happens every single day in the world for anybody who is raising a child that is different. And I don't mean because the child is different, but because of how sometimes the outside world we perceive or treat their child. So that's what. I hope I can be for somebody else, that I can be the person there, that when they were at their lowest ebb or when they were lost, they started hours or even while they're on their journey that I'm there, or as I say, if I'm not the one, I can always try and direct them to who is or should be there to help them.
And I think we all were just a bit kinder to ourselves, to each other. A much nicer words it would be. And as you say, take out the judgment, the judgment. Even half of myself, you know, as parents, like I have the weight of the world on my shoulders that I put there myself, that I should be doing this and I should be doing better as a parent. I should be doing like we should be doing more home school.
Yesterday, we didn't do any homeschool. We made cookies and we just relaxed and kids played. And we should have the good work, which I said to the teachers that Jack was a bit anxious and he was out of sorts.
We didn't do anywhere near like that's why we do the best part of that is that they do the best you can and when it gets too hard. Ask for help. Yeah, ask for help. And if you're someone, someone is asking for help. Don't tell them like said to me.
Don't blame the parent. No. Or don't don't engage with their say by saying no, it's not that it's you or no, no, they're fine. But listen, because as you said at the start, you as a parent and as a mother in particular, you just you just have this. You know what it is? I just had a sense immediately because there was something going on. But I know what it's like to feel like you're invisible.
So if you can raise anybody up, we should do it because it's great to support each other in the good times and bad, but in the good times to just say, look, I've got you there. It's like you've got a runway for Amanda.
You and your little platoons are absolutely amazing. Thank you so much for joining me and sharing your story today.
I'll take you through.
I just can't believe I got to be on everyone, like, actually can't believe I'm actually listening to a terrorist after the other day on this. And I'm like, I my how you are.
It's a well, well deserved story going on. So I'm so honored that we've got to share it all the time.
And so I'm so thankful. But I'm also just it's like you ever have a pinch me moment, like, you know, I can't believe deliver so much. Thank you. No, not at all. Thank you.
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If you enjoy this conversation, subscribe regularly, review, share this episode across social and get in touch with this week's guest, Amanda Atlatl, Putin's daughter EE or the autistic educator on Instagram. Talk to you again next week.