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Autistic Man Talks To Mother About Childhood
300 Plays1 year ago
What early signs of Autism did Thomas have in childhood? Why did Michelle choose to diagnose Thomas as Autistic? How does mental health impact Autistic children?
TW: Mental health
Michelle Henley is first and foremost, the host's mother. Starting off in the 90s as a special needs teacher, she worked up to a respectable role of a SEND lead for the Redcar & Cleveland Local Authority. She did a lot of work on educating mainstream teachers about Autism, but also parents through peer awareness.
My Links - https://linktr.ee/thomashenleyUK
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They kick off the conversation by talking about Michelle’s diagnosis of Vocal Dysphoria, before taking us through the signs of Autism that Michelle spotted in Thomas throughout the years. She highlighted that she felt exceptional at parenting, as her first child Thomas hardly cried and was very easy to look after… but like many other parents, she started to question whether this was typical for infants. He never communicated his needs and seemed to be utterly fascinated by colourful lights.
After a tough time integrating Thomas socially within the community and in school, and multiple incidents with sensory distress, she decided to take Thomas for an Autism diagnosis at 10 years old. Thomas & Michelle reflect on the moment Thomas was told he was Autistic. Michelle framed the Autism diagnosis as a difference, with both positives and negatives. Thomas appeared notably relieved to her surprise, with the host chipping in on his own feelings of alienation even at that young age.
Thomas experienced extensive bullying, mental illness, isolation and other difficulties in school. In a touching conversation, Michelle gave her thoughts and feelings around these difficult times… despite the affirmations of it all being an adolescent stage from other parents, Thomas started to withdraw from his happy-go-lucky personality. He ceased communication with his family, engaging in harming behaviours and sinking deep into emotional turmoil.
From his hardships to his success in multiple areas of life, Michelle describes Thomas’ life as a rollercoaster of incredible highs and catastrophic lows. They both bond over the joy they felt in his defining experiences and discuss the barriers to supporting Autistic people socially within education.
As a round-up to the eye-opening conversation, Michelle highlights some key difficulties with supporting Autistic children through life. They talk about the differences between behavioural-based parenting and a more holistic relational style of parenting Autistic children. She leaves us with some lessons on how parents should view Autism and their approach to helping Autistic children experience the world.
This has been an emotional and touching episode with both mother and son giving their perspectives on the Autistic experience of one man.
Song Of The Day (Listen Here) - https://open.spotify.com/playlist/5UDIyN5TSYN4zMcRoQPrG8?si=9255ed3480d840b5
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Transcript
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Thomas's Childhood and Autism Awareness
00:00:46
Speaker
Good day, and welcome back to the 4TOT podcast with your host, Mr. Thomas Henley, of course. And today I've got another very, very special episode for you. And in fact, it is special because it's the first time we're doing an in-person podcast. And I am joined today by my very lovely mother, who's going to talk to, well, talk to me about some of the experiences that she had with me growing up as an autistic child.
00:01:15
Speaker
for a teenage hood, going to university, doing all my sporting events and competitions, and hopefully give you guys a bit of an insight into my life from a different angle. Yeah, so how are you doing today? I'm good. It's good to be here. Hi, everybody. Hello. So do you want to tell us a little bit about your background?
00:01:39
Speaker
I know that, well, obviously, you're my mum. But a little bit about what you do. Okay, it's good that you pointed that out. I'm just going to say sorry to everybody for my voice. I've got some voice difficulties. So bear with me. I'm going to do my best with this one. So obviously, first and foremost, I'm Tom's mum. Very proud of Tom and everything he's been achieving and working on the
00:02:09
Speaker
podcast and doing all the speeches and just surprising that acceptance of autism in the community, the wider world, which is great. It started off in the 90s as a primary school teacher. I became aware of autism through my teaching and
00:02:36
Speaker
It's okay don't worry about it well yeah many of you will know that I talk about my mum a lot on
00:02:42
Speaker
on the podcast because she's been such a big supporter of me and a big inspiration for me growing up. I'm very lucky to have such a strong family support network. And my mom's been incredibly key in helping me develop socially, also with following my dreams, things that I want to do. I know that
00:03:10
Speaker
As my mum said, it's, you know, she's been struggling with her voice for quite a while. What happened with that? I can't remember what it was called. Yeah, I have a phone call, this phone, yeah, so the phone calls are quite not moving as they should be, so they're a bit squeaky. Yeah, yeah. Yeah, it was a special needs teacher and then went on to be head of SEND for local authorities, so kind of looked at things from the other side.
00:03:39
Speaker
I worked with parents on outreach to support their children in school. And I also worked on doing parent training and also training for our stuff in schools to support children and their needs in the mainstream. And you've been doing a lot, haven't you? Because I remember, you know, you used to sort of be, you kind of went through a period of time, didn't you, where you were
00:04:09
Speaker
working sort of at one of like the local special needs schools that we had. And then I think you took up like a really sort of out of the box, high, you know, very high up job within SEND education. I think you had like the, the manager of the SEND manager for Redcar and Cleveland. Yeah, strategic head of SEND. Strategic head of SEND. So
00:04:37
Speaker
I think after a while it was quite an intense job, wasn't it? It was. It was to say the other side of things in terms of getting provision for children we sent and making sure schools were
00:04:51
Speaker
trained up in the way that they should be and kind of bleeds together the special schools and adults like they made the straight to make sure the proficient was good. Yeah. I think one of the reasons why you you decided to leave that job was because you you missed working with the kids and stuff. And I agree with you. I mean, when like the first job that I ever had was within special needs, I would wait as like a special needs teaching assistant, as you know,
00:05:21
Speaker
And I really miss the kids. It wasn't really a job for me because it was very taxing on me. Quite stressful. And the working days are very long. Well, not long, but they were very sort of intense and you have to be like, as a teacher, you have to be very like switched on and like,
00:05:43
Speaker
planning things and I found it really, really hard. But I do miss a lot of the kids that I used to work with. So I understand why you decided to kind of go back and have a bit more of that local. That's what makes me smile, walking through the door and seeing the human people. And they said, and our children, that they're so unique and so pure of heart, really.
00:06:11
Speaker
absolutely amazing and everything they do and it just brings you back to ground and what's going on and I was a bit too far removed in my previous job I think. Yeah, you're having sort of an impact on like the frameworks and sort of
00:06:30
Speaker
But it was very detached, wasn't it? It was. From the families and the children, yeah. Yeah, yeah. Well, I know today we're here to kind of go a little bit through my life.
Early Signs and Diagnosis of Autism
00:06:45
Speaker
I guess from a different angle, because I get a lot of questions from people, especially during my live streams, who ask me like a lot of questions about me as a youngster, but you know,
00:06:59
Speaker
just part and part because I was so young I don't really remember much about it. I think the earliest memory that I can really think about was when we went to get like an autism diagnosis for me. I remember that quite vividly. Obviously we'll get into that in a little bit but I guess
00:07:21
Speaker
Starting off, I mean, looking back on my early childhood, what signs of autism did you first sort of see in me and what encouraged you to go and get a diagnosis for me in the first place? Okay, and I thought I was absolutely smashing into a vegan mum because I have this little baby who slept routinely and won't go through four hours and
00:07:49
Speaker
wouldn't sort of make him off, wouldn't cry when he wanted feeding, wouldn't cry when he did his, you know, obviously messed his lap, him, whatever. How did you realize? Well, you asked him to come on, Tom. You didn't get this, guys. Sorry. So I thought, wow, it must be amazing first time, but why not smash this?
00:08:16
Speaker
What I didn't realise was that was very early things that Thomas not communicating to me his needs right from being tiny, right from being a newborn. However, I think our older things started to change a bit and we saw kind of no motivation to kind of move or kind of
00:08:40
Speaker
He would become very fixated with lights in particular, and that's still the same today, isn't it? It's like we have an abundance of lights and sensory lights around the house, which is lovely actually. It's really nice and calming, but something that really helps Tom a lot. Let's go have a drink, guys. It's all right. Yeah, I think it's, so like,
00:09:07
Speaker
Because I imagine that with most babies and kids, they would have that sort of ignition to let people, let the parents know that they need something. I think, I've spoken to a lot of parents with autism and I think until you have your second child, you think it's the norm. Yeah. And you kind of,
00:09:32
Speaker
quite intuitive with your own child. So you just kind of carry on and adapt your life and adapt things around your child. So maybe when you have your second child or somebody actually unpicks it and points out the differences that you're
00:09:49
Speaker
it may be a bit unusual like New Charles' hair at night time when they're asleep. I remember that part of things. It's like you ended up with a lovely little bowl cut quite often, which you've improved on the hairstyles now. Yeah, I think I just I found like hairdressers and dentists and like hospitals and stuff really hard. I think like
00:10:19
Speaker
I do actually remember the situation. I went to one barbers and there was like, loads of lights and loads of people around and there was like, I could hear all the hairdressers. And I remember just being in a very sort of, like, I remember somewhat aspects to aspects to that experience. I can't remember which, when it was, but you were about
00:10:45
Speaker
We're about four. But I found that hairdressers and going to it really, really hard, but also like the stuff around, like the clipping of scissors around my ears. I felt really, I was nervous about someone accidentally cutting me, but I was also, I just didn't really like the sound of it for some reason.
00:11:09
Speaker
so highly sensory though isn't it? It's just a sensory effort in itself. But I think once we kind of gone through finding somebody that would kind of follow you around and somebody that was very gentle and understood and
00:11:27
Speaker
had a low sensory environment, were able to get your hair cut, but I was sat outside the barber's the other day, looking in at Tom because I went to pick him up, I didn't stalk him outside, but sat outside watching him, just thinking oh my goodness, you know, this is actually huge, because all these years later he's able to actually enjoy going to have his hair
00:11:50
Speaker
Oh yeah, I like it. It's like a social... And we'll sit there looking in the mirror with everything that used to absolutely just make your life a mystery. I think the biggest reason why there was such a shift in that is because I went to a barber in Manchester and I intentionally... I went there. I wasn't expecting it to be too bad, but it was like the barber was like a very aggressive of like the tugging and
00:12:19
Speaker
stuff and I used to like go away with like watery eyes and I even got like my eyebrows threaded and stuff as well because I kind of I used that place as like a way to like desensitize myself to it a little bit. Mine not being the best approach to it because it was very very difficult but
00:12:40
Speaker
I think now that I've found a hairdresser that's quite understanding about my sensory needs, it's a lot easier for me and it doesn't worry me as much. I think it's just being exposed to it, isn't it? I think that's really key actually because quite often when I've spoken to you it's not the criticism of any parent but quite
00:13:05
Speaker
Often a lot of parents kind of say, well, they can't do that because they have autism. I think from your early start, I used to sort of say, right, we're going to give this a go. I think maybe it was a bit kind of glassy, but it was said, right, we're going to give everything a go. Just say you've had experience of it and we'll move away from it if you're not happy.
00:13:30
Speaker
so we just gave everything a go and didn't put the ceiling on your arm on the things that you could do so you kind of desensitized over time but I think the biggest thing for me was there were a few very subtle things like you would sit and do repetitive hand movements when you were a little boy you would sit and just sit like this
00:13:59
Speaker
just for hours doing this, that you would spin on the floor and you would never get to say, but you didn't each show milestones such as crawling. So some children kind of take their time and build up skills whereas Tom would like not do it and then all of a sudden he would crawl and then he would up walk and then all of a sudden he got up and walked and then
00:14:28
Speaker
The one thing was, he didn't have a
School Challenges and Social Skills
00:14:30
Speaker
speech to play a bit. I think I've got the worst speech to play in anybody. He wasn't delayed in his speech at all. And actually, his speech was really well developed. His cognitive ability, his learning was really, really good. He used to read a lot.
00:14:51
Speaker
He would sit and repetitively go, sit with your granddad actually and just go through pass the books when he was about two or three and just go through all the books for hours. Really good focus, but then when he went to school, because it was a different environment, different expectations and pressures, he actually stopped reading and ended up going in a group to kind of
00:15:18
Speaker
to read, so it's a bit of a shock. Yeah, so I kind of had those. I kind of understand it now, but I didn't understand it at the time. I've learnt a lot more as I've gone along, and that was a big shock to me because you were doing so well and enjoyed everything. You were supposed to go to school to develop those skills, aren't you? Yeah, wow, but because everything else was so overwhelming.
00:15:42
Speaker
that kind of stripped back and a lot of parents talk about children losing skills. And they do, but other things have a same precedence. They do lose the skills, but then they make the skills of decay. The skills do come back quite often in most cases. You can all hear me, OK? I'm sure I'll be OK. OK. Now, there's something that you said about
00:16:17
Speaker
So the speech delay, because the speech delay is something that I get asked about a lot by, as I said, people either in comments or sort of sending me messages or asking me on lives. When did I start speaking? When's like the milestone that most people... It was really early. So you started seven, six, seven months. Wow. And you didn't say mum, mum or dad. And you said, pop, pop.
00:16:37
Speaker
Like, um
00:16:45
Speaker
Oh, the dog. The dog's name, which was made disappointing to me, but he did lots of babbling. That's kind of the difference between kind of typical autism, I suppose, and the Asperger's diagnosis as it was. Actually, there was no speech delay, so that was kind of one of the differences that
00:17:10
Speaker
with because I thought we can't be autistic because they have a speech delay but it's the different variants within autism and as we know everybody is completely different in their presentation as we all know. What about the social elements? Because that's something that I think we haven't touched on. How did I get on with other kids around that kind of early age?
00:17:38
Speaker
One of the things you did, you were always a bit of a watcher. You would kind of, a priest girl, I remember Mary saying to me, he always stands back and he watches and then he kind of copies and takes part. But you were always very wary. But what you did too, you were very gentle and lovely with all the children when you went to play group.
00:18:07
Speaker
It was always learnt responses and learnt behaviours. So you would watch me with your brother and I was, if he was crying, I'd always go, oh, poor baby, poor baby. So whenever someone cried or anything else in settings, sort of outside their home, Thomas would go, oh, poor baby. And we'd kind of tap them in kind of a really, it was a really learnt response, but he'd help with it that way. Yeah.
00:18:37
Speaker
It's like a early on, kind of four to five, you were really not so sure, but you would have French, you would go to parties. It'd be more of kind of the sidelines, kind of just observing. On the sidelines, observing.
00:19:01
Speaker
if somebody came to the house from a very early age we had to say to Thomas, Thomas stop, say hi to Grandad or can you look, say hi to whoever, because it would just look at the objects in the room and not the people. So we had to kind of do a lot of work unaware unless that he would really um, had to
00:19:25
Speaker
I couldn't really touch him with being with me. It would really struggle if I would laugh the house. And I think that's just kind of...
00:19:36
Speaker
because it was unpredictable, because it was change. So I remember you saying about Nana. When my grandma used to come round, I'd shut the door on her and tell her to go back to her house. Well, you did, because I was going to work, so it meant change. Somebody else was coming round. You'd say, you go to your house.
00:20:03
Speaker
She got romantic at the door closed on her, but then she got out. Did she know much? Was she very aware of that stuff? I think she struggled to understand it, because she would come in and say, I've got a surprise for you. And you would go, oh, and you'd have a meltdown, because you didn't like surprises. You didn't like to produce villainy. He liked to know exactly what you were doing, where you were going.
00:20:33
Speaker
because people typically think she could love surprises and you didn't. So that was a big, that was a big difficulty really, but she got the kind of, she loved you, so she got to, you know, what you could cope with and what you could earn. Sometimes it weren't, sometimes it didn't. So yeah. That's a tricky one. What about like the, so we talked a bit about like the signs of,
00:21:01
Speaker
autism, when I was younger, I mean, I just be really interested in like, what was like the the tipping point? Because I know that I was diagnosed when I was about 10. Yeah. What was kind of the the ignition to going and getting the diagnosis? Because, as you said, like you, you know, I imagine you kind of look back from from when I was that age and look back on signs of seeing seeing it when it
00:21:32
Speaker
in myself when I was little. But what was like the sort of the point where you're like, oh, hey, actually, we might actually have to go get in a diagnosis and what held you back from doing it before? Okay, so I think maybe I was kind of naive, I think, originally, because I thought that
00:21:58
Speaker
because we were able to modify and kind of support you, make adjustments, you know, make sure that everything, your world was okay, that everybody would. And to some extent, primary school did, but maintaining friendships was really hard for you, so we would have to do a lot of kind of
00:22:27
Speaker
supporting when friends came round with structured activities and things like that. You struggled to just free play because you were quite possessive over your toys as well. Yeah, I remember that, especially with my brother. Really hard to share because of course it's a social skill and we had to do quite a lot of work on that. So I think the key thing for me was when you went up to the year five, year six in
00:22:58
Speaker
junior school and you had a teacher who was quite sarcastic and a lot of teachers, you know, do use sarcasm and we all use sarcasm through here. It's a good thing to learn but actually because you were quite literal and you're thinking and in your language you really struggled with that and it kind of made you
00:23:28
Speaker
remember you teach describing you as the class clown. Yeah, I remember that. The class clown, that doesn't kind of work for me. It's not for you to visit, really. It wasn't coming to either. It's happening, you know. Friends. So actually what Tom was doing was friends were putting him in a position where he
00:23:52
Speaker
he would do what they told him to do and he would get the repercussion and he would make a fool of himself. Sorry. No, no, no. I remember that, like, especially like at parties and things like that or at school where... He would get the blame. He went through a party. Frank's told you to call this girl a name and you ran around shouting this name and then didn't realise what the repercussions were.
00:24:22
Speaker
lot of incidents like that where people were kind of, I'm not saying you were perfectionist, no kid is perfect, but a lot of situations where the social skills just weren't, just weren't kicking in and then obviously hormones were kicking in and the friendships became more complex and you were kind of being left behind you a couple of years behind your peers in terms of your social skills.
00:24:52
Speaker
So you started to get a bit of playing creepy and there was little bits of tussle with friendships and actually you started to withdraw a little bit and your behaviours became more rich and when I was sorry I was going to drink. It's all right. I do because I kind of
00:25:17
Speaker
No, in my head, I felt like I was kind of more my sort of genuine self when I was a lot younger. Like I felt a lot more free and loving and expressive when I was younger. But I remember going so around that sort of age, going into around the age where I go into secondary school or perhaps the end of primary school that I felt, I guess a little bit. I don't know. I just.
00:25:48
Speaker
I just, I just became very sort of withdrawn in myself and I didn't, I was questioning a lot like my interactions with other people and I found it very hard to grasp exactly what was going on in situations. Yeah, being, I think you were being sucked down a tunnel really, I think it's like one of those psychedelic tunnels where you're just like, everything's going on around you and you kind of didn't know where you fitted. Yeah.
00:26:17
Speaker
And I think he stopped to move back through that tunnel and kind of became more withdrawn, which he'd never had been before. And back then, not reportedly, the school were not understanding. And I kind of got a very negative response at one point. And I went in with the St. Coda practice. And I was told there was nothing that could be done for you because you were very academic.
00:26:44
Speaker
And I hear this a lot, and a lot of parents hear this, that actually their child is okay at school and doing well and coping, and actually it's not okay to just cope. No, it's not a... Coping means you're on the edge and you've got a teacher actually, you need to be supported and progressed and feel comfortable and not just cope, because that leads to mental health difficulties. It's not just about the academic side as well with school.
00:27:13
Speaker
Like there's a big heavy social element of, you know, developing that social emotional side is quite important around that kind of formative years, you know. It's absolutely huge. If you don't know, if you don't have a connection with how you're feeling, you can't name it and know what's going on in your body.
00:27:36
Speaker
And how do you form relationships with other people and kind of progress with that? I think with boundaries as well, like setting boundaries was really, you know, it's only something that I really understood when I got into sort of late teens, early adulthood. It's kind of, you know, I didn't really understand, you know, I thought that being difficult or putting boundaries in place or getting upset at people was inherently just a bad thing.
00:28:05
Speaker
Like, I felt very strongly that any show of anger or dismissal was like a bad thing in every single circumstance. So it's kind of like, I didn't allow myself to be upset with friends, I guess, as much. You were quite a passive. A passive young man, and you don't always
00:28:32
Speaker
always sort of pick up on different sort of tones you got with me at the moment but if my voice changed you always thought it was because i was angry with you yeah so it kind of went the other way as i didn't notice it and then i did notice it but i didn't know how to exactly what to do about that
Parenting and Autism Diagnosis Reflections
00:28:53
Speaker
you know like all understanding i guess in like the whole picture of like the context of it i guess
00:29:03
Speaker
And I think sort of moving to the other side as well, kind of looking after yourself, you struggle to kind of know the routines of how to shower. So that executive function inside. So we spent probably about a year and a half kind of having routines in place for you to be able to shower. Because if we changed the shampoo, you thought it was a different, it wasn't shampoo anymore. If we kind of would realize that
00:29:33
Speaker
And visual pictures didn't work for you, but actually lists that we could go and take off and write. I still use that. And visuals really worked. And it just became embedded and that you do it. So that went really well. And it was a friend that said to me, you do realize that not everybody does this, don't you? And I thought, oh, actually, I know they don't at the time.
00:30:01
Speaker
I think, you know, a discussion obviously between Tom's dad, he was very, you know, it was very supportive and I think the lead up to the diagnosis was mainly because I knew you were coping and I thought actually moving it to secondary as a lot of our parents I know do.
00:30:20
Speaker
child is moving to the secretary. You know it's a big apartment and you know that there's a big, there's going to be lots of teachers dealing with you in different ways. It's very complex social interactions. It's a huge complex. I thought actually I need a piece of paper to let people know what is the form that you need and what is what's happening. There was also a side of me that felt really guilty. I thought
00:30:47
Speaker
Is it something I've done as a parent? You're sort of blaming yourself for the struggles that I had. Huge girls. I know you acted as well thinking that something was wrong. I didn't do something. I wasn't loving enough. I wasn't
00:31:05
Speaker
actually I knew I was a loving parent and know that we were warm parents. That whole stigma around like the refrigerator mother hypothesis. If you don't know what refrigerator parents it's like I think it was like a hypothesis that someone came up with that someone that people ran with whereby
00:31:26
Speaker
autism was not like, as we know, like a neurodevelopmental thing, it was more if your parents didn't show you love or interact with you or, you know, engaging like physical contact and stuff with you that
00:31:42
Speaker
it would cause children to become withdrawn and more autistic and it's complete it's complete bollocks but yeah and so if there's any moms out there feeling guilty or dads don't because this is not your fault and that's a really big thing to take away and you're doing a great job and
00:32:04
Speaker
I always think the best children, the children that need the most come to the right people and the right parents. So just keep doing what you're doing. And, you know, I was saying about before, before we sort of got into talking, I mean, one of one of the sort of key sort of stages in my life or key moments in my life was when you told me that I was autistic, like,
00:32:31
Speaker
Did you know that when you were going to get the diagnosis that you'd tell me by a certain age? And like, how did you go about sort of framing it? Because I do remember that it was kind of framed more as like a neutral thing rather than something inherently negative or inherently positive. Like how did you, how were you, what were your thoughts around like telling me that? I think I got the diagnosis.
00:33:02
Speaker
I was quite teary and selfishly quite relieved that it wasn't me that had caused that. You got that stigma around. It was something that was happening or had happened and it was who you are, you know who you are and we had to learn and grow with that and it was okay but we just had to make other people aware of it.
00:33:28
Speaker
it retrospect I probably would have done more work around it knowing what I know today I would have done a better job at supporting you with a diagnosis but that's in hindsight so we decided as soon as you got the diagnosis we would go and tell you immediately
00:33:50
Speaker
So we took you to, I don't know what you'd do, but I took you to my daughter's. Yeah. So we sat down and we talked about why we'd had the meetings, why you'd come to see this lady and blah, blah, blah. And I'd say you've got something called autism, which makes you think a little bit differently and makes you feel differently and maybe it suits the world through a different
00:34:19
Speaker
different classes almost and you just kind of looked at this and smiled and you went, oh that's why, that's why I feel differently and that's why I do the things that I do and you just kind of took a big sigh in almost
00:34:36
Speaker
It's like a weight was lifted off your shoulders. But it's like something had just clicked into place. And you were just like, okay. I'm good, I'm okay with that. I did recognise even at that time that I was, something was different, like just from my interactions with other kids. And I don't know, it's just kind of a feel of feeling of just being like a bit of an alien. Like it was very hard for me to put on exactly why, but I just
00:35:04
Speaker
I remember just feeling completely overwhelmed and like everything that was happening around me was just so complex. Even with like kids my age, it was hard for me to have any sort of clarity on what was happening to me. I felt a little bit like I was in a different universe.
00:35:28
Speaker
And I think other parents were also saying things like, oh, Tom came for tea and he sat under the table at the table. That's very odd. But I kind of went with it and it was like, well, he doesn't like to sit with the icon. It was all too much, too much social at the table and noise. But we had some parents that were really supportive and supportive friends and others that were just like,
00:35:56
Speaker
don't move away, don't be his friend kind of thing, which is disgusting. It's disgusting, quite frankly, some of the things that I know a lot of parents come across really, and it's hard. It's really hard. That's a big thing, isn't it? The willingness of parents to kind of integrate, like there's a lot of social exclusion, a lot from other kids, but also like from parents as well, who parents of neurotypical children.
00:36:28
Speaker
were really lucky because you always, you're a lovely little boy and you've always got invited to the parties and so forth. The network of mums were really good. But I hear of, you know, if you could do one thing, just invite that little person who is seeming like a fish out of water in the playground, just invite them to our party. They may not be able to cope, they may not come, but just invite them.
00:36:57
Speaker
You know, it will make them feel more included, and the parents as well. They will probably go through a really tough time. So it's just to have that thought, really, isn't it? And just, I don't know, that just sends off. I think a lot of parents, they get a bit, I mean, humans in general, just from any type of discrimination, a lot of it's based on not understanding and not being scared or, you know.
00:37:27
Speaker
It's sort of ignorance and also, but it's so damaging. It can be so damaging. It really can. It really, really can. I'm very sad at it. It's not great. But the special school that I work at at the moment, if I look at our amazing young people and I just think, they're so vulnerable. You know, it needs to be a community. We need to be a community supporting each other, not just kind of
00:37:56
Speaker
pushing out the people that we don't want, you know, we're all different. I think that's a big issue, especially sort of in modern times with the advent of social media and online things. Like communities are becoming very atomised, like people are becoming more, more seeing themselves as individuals rather than parts of the community. Like you go to smaller communities around and perhaps they have a lot more
00:38:22
Speaker
They have weekly church meetings and stuff where they invite all the members of the community to talk and chat.
00:38:31
Speaker
build that community up. But I don't really see that a lot of that. Nowadays, it seems to be very broken up, like. It is. And I think that support is really important, particularly for parents to just have a chat, just know you're not isolated and that other people are going through the same thing as you are. And that's OK. And it's just a different way of life. It's a different way of living. And your children are amazing.
00:39:02
Speaker
You just want to share that, you know, because our young people, like our children do amazing things. And you know, Tom's proof of that really for me. Stop it. Well, um, I mean, what, um, it's kind of a bit, a bit further into, I mean, did you have any difficulties when it came to parenting with me?
Unique Value and Emotional Regulation
00:39:26
Speaker
And I guess like,
00:39:29
Speaker
Was there any individuals, any kind of, I don't know, speakers or role models or parenting groups which kind of informed your opinion? Because I feel like a lot of parents nowadays, especially with the types of practices that a lot of autistic people feel very negatively towards and don't agree with. Whereas my experience of parenting
00:39:59
Speaker
from your side and also your style of teaching, it seems to be a lot more kind of holistic and a lot more individualized as opposed to like trying to fit everyone into programs and setting like very stringent milestones and things like that. So yeah, difficulties perhaps with parenting me about certain things and what kind of inform that? Okay, so why didn't
00:40:27
Speaker
We were leading up to diagnosis, hadn't diagnosis, I read and read and read everything that was out there and I think one of the biggest influences was reading Anna Kennedy's book, Red Not Stupid, which was an amazing book if you ever get to read that. I'm an ambassador to Anna Kennedy if you want to go check out her work. I was very pleased that that happened, it was like coming full circle really.
00:40:58
Speaker
also Tony Atwood, because he particularly looked like Asperger's, which Thomas was diagnosed with at the time. We've come under one umbrella of autism, but that was a diagnosis, so that's what we looked at. I also read a lot by Wendy Lawson, who did a lot of work on relationships and kind of sexual health as well, because I knew
00:41:26
Speaker
It's like Thomas is going to go into puberty and if there will be other things coming up. Pardon the pun. Jesus Christ. Sorry. You're the worst. You and Dad, you're the worst for that kind of stuff. Something about your generation or something. Yeah, swiftly moving on. Go for it. Same way. Same way.
00:41:56
Speaker
I just read and read and read and then obviously I was using a lot of strategies in my teaching and write a lot about approaches, particularly kind of stringent approaches, particularly coming maybe from America, such as ABA and so forth. I think a lot of this and I'll know what you're talking about.
00:42:22
Speaker
And it really wasn't for me. And I just thought, actually, we have to go from the child and just strip back and know what the child is and how we relate. So it was more of a relational approach to parenting. Which is how you parent anyway. It's more explicit of everything we did. We made it explicit. You don't do this because
00:42:49
Speaker
When we're here, we do this because we taught you idioms because one day I said to you, you know, I'm going to put a smile in your pocket, Tom, and you jumped a mile. We taught you because you were very literal. So we taught you a lot about idioms. So we did everything very literally. Cats and dogs, grinning cats and dogs. Absolutely. So we were kind of
00:43:17
Speaker
after suddenly to your own flow and I know I wanted it I said to you wouldn't I but I know you were in your book bed and you said to me mum would you change me would you take my autism away which was a really random question I think you were about 12. It's a very deep question to ask it. It was it was a really deep question you threw me really
00:43:43
Speaker
And of course, I was like, no, because you wouldn't be here, you know, you wouldn't be time and why would I take you just like your brother? Why would I take you brother? You know, you are my family. I think that's just like, it's just, it's something that I think, you know, I think that sort of approach was quite important for me. I mean, I went through stages of absolutely hating.
00:44:10
Speaker
Autism and myself and I kind of blamed a lot on it, but I think you know, you're right. It's like If you if you make someone not autistic you're changing their brain like they're not the same person like That the reason why I'm so keen for like first identity first language and things like that because
00:44:35
Speaker
You know, it's, it's not like I've lost an arm and I used to have an arm and it's something that, you know, it's, it's, I guess it's somewhat a part of my identity in a sense, but like, it's not as so tied to who I am as like something about, about my brain that's different. It's not a disease. It's not a disease. You know, it's,
00:45:02
Speaker
a different way of wiring, different way of looking at things, and it's a very useful way of looking at the world as well through a different lens, it really is. We were talking the other night, weren't we, about normal? We were like, that really shouldn't be a word called normal, because there were so many different variations, you know, we're all unique, we all have a fingerprint, we're all different, we're all unique, so what is normal? You know, how do you define that?
00:45:31
Speaker
It really shouldn't be a word, should it? No. I think there's two ways of kind of looking at it. I mean, I find normal to be a very negative term. It is. I agree. Normal is not a compliment or a validation. Like the most, you know, you want people to be interesting and to have different views on things and to
00:45:57
Speaker
be able to add something to the melting pot of humanity. It's not like...
00:46:03
Speaker
Like if we're all the exact same person, we would never get anywhere with things. Like, and a lot of like the big visionaries and stuff in the world, you know, they're often different from most people. And I think for me, a lot of like my mentality around it is that, you know, I see being strange and weird and quirky as a good thing. Like it breaks up the normality of boring everyday life and it allows you to
00:46:34
Speaker
know if you meet someone who's vastly different from yourself it's it can often be quite illuminating to like see how they like look at the world and what they think about things and how they behave it's um i do i do you know because i think
00:46:55
Speaker
There is a stereotype around autistic people being really fascinated with objects and things.
00:47:06
Speaker
I really kind of, I didn't really identify with that kind of thing. So I remember like reading stuff from like Temple Grandin talking about, you know, we're more fascinated by objects than, than people. But I've always, I don't know if it's something that you saw, but I've always been incredibly like fascinated with understanding how other people work. Like,
00:47:30
Speaker
You've always kind of had that need to understand other people and unpick them. And that's been a big motivator in you to find your social skills. But I think not all people have that. But it's just like we're always told, you know, you teach one person, one child with autism, you teach one child with autism, you know, everybody is so different. But I think
00:47:58
Speaker
sort of the things you're doing and the things you're talking about, you know, if you don't have those difficult conversations and kind of challenge things, people never change their thinking. So it's good to challenge and it's good to kind of talk about things that might be really difficult, you know, and kind of promote that and strike a conversation and a discussion about it.
00:48:24
Speaker
Is there anything else that you wanted to add about the difficulties? Yeah, I think it's a common one for a lot of parents to sleep. So when you were a baby you were very routine and you slept beautifully. I actually got older obviously, I didn't know about melatonin at the time. It's such a big thing with autism isn't it? It's a huge thing but you would go to sleep, you wouldn't go to sleep. You still got to drop off.
00:48:50
Speaker
sleep once you're asleep you're okay. Yeah, so the same in adulthood as well. Yeah, so um you just kind of lay on the bed with you but you were very sensory it's like okay it's not good for everyone so Thomas would always crap it whether it was me or his dad would always crap your mouth
00:49:11
Speaker
kind of squeeze and squeeze and squeeze your lips and it must be a sensory thing that it would eventually just drop off to sleep and it was I mean it went on for years and years and it's only your teenage years really that you got prescribed serotonin and then
00:49:30
Speaker
for a short time but it's not like last day and you still struggle with your sleep out here and we've tried everything haven't we really yeah it's just i think it's because i'm so wired like i'm so cerebral about everything that i do like if i stop doing things and try to like relax in like the typical way i just get really irritable and bored and like
00:49:59
Speaker
It's like my entire day from waking up to the evening, it's like I'm always thinking about something and doing something. And when it comes time to sleep, it's like, I can't really break out of that, that kind of way of being to a point where my brain calms down and that I fall asleep. But I mean, I think for me, like the most, the things that helped me a lot were
00:50:27
Speaker
having something to focus on that didn't require me to think, really. So I still have somewhat of a focus on it. Nowadays, I'll turn my phone down to the lowest brightness and turn on the orange light stuff, the night screen thing on my phone and just watch a video or play a mindless game. And that seems to help a lot.
00:50:53
Speaker
I think that's probably reflected in a lot of things in life, like the way that, you know, like they say a lot about, you know, go with the flow, go with your gut. Never worked for me. It almost always causes me a lot of distress and it just doesn't work.
00:51:13
Speaker
It's too loose, it's not literally, it's not quite enough. It's also based on emotion as well. I think around, especially when I was younger, I didn't trust at all. I remember looking at my friends and people around me and just thinking, I mean, socially, I was behind, but I could still recognise that
00:51:36
Speaker
like some of the behaviors that people are doing and like how they just did stuff because they felt like doing it or they just instantly did things and I found that really confusing. Like I didn't understand why people did stuff without thinking and knowing why they're doing it. I think it's true, yeah. But I know you never switch off because even when you're in the bathroom you're always listening to research or audible like you. You never stop, you're always okay.
00:52:06
Speaker
and then you get the burnout, that's the only drawback is the burnout, the sensory overload sometimes when you go to events and so forth and you do really well and you've socialised really, really, really well and you know, you have a good time but in the next day you're just wiped out completely. Yeah, that's social battery.
00:52:32
Speaker
Absolutely and you just need to have that bound time and people need to understand that partners, families just need to not take it so personally really, it's not that they don't want to talk to you, it's just that actually you just need that almost that reset isn't it?
00:52:51
Speaker
Well, we have like a friend of the family who's like, has like an autistic daughter and I absolutely love her. And, you know, whenever we interact or something, we'll have probably like an hour where we'll chat and stuff. But then after a while, we'll just kind of just sit in silence and just like play with some metal or watch something. It's kind of, it's interesting like with that, cause it's, I feel like
00:53:19
Speaker
some parents they feel like they have to do stuff all the time or they have to teach them all the time or get them involved and be like really on top of them and stuff and I think sometimes they you know obviously like a lot of the time the best approaches to kind of you know trying to help them experience different things but also you know feel okay to withdraw and pull back when you need to
00:53:46
Speaker
Sometimes you just need to back off and stop talking and a lot of teachers find that with autistic children that when they're having a meltdown.
00:53:56
Speaker
They do more, they sing more, they ask them questions, more people come around than... That's really interesting. Actually, just back off. They're kicking you because they want you to move away and they can't verbally say it at that point. So yeah, it's really important. It's really interesting as well when I went to these, especially these teaching stuff, like obviously in some areas I wasn't
00:54:22
Speaker
so good with, you know, because I just didn't have the experience with teaching kids and no understanding. Like, I think I found really hard with the thing that I found really hard with teaching is being more authoritarian, like in the way that I act. I found that really hard to do. But I remember, like, there's been quite a few times when
00:54:48
Speaker
know, perhaps a kid that I was working with who, you know, they were struggling with something and, and the way that they dealt with it was by going towards them and separating them from people. Whereas what I really tried to do with them was to
00:55:07
Speaker
say that, look, okay, most kids, they're not allowed to go out of the playground and go to this area, but it is quieter. Does it help you? And does it sound better? Or like, you know, when I saw that they're getting overwhelmed, I was like, do you want to go to the to that area that we go to? And they just kind of sit and they count like the stones on the pavement and you know, regulate themselves.
00:55:33
Speaker
Yeah, but also also making them aware of what how how what they're doing is helping their emotional state as well. Because I think
00:55:41
Speaker
there is a tendency sometimes with autistic kids to try and take the reins a little bit with stuff rather than like teaching them how to do, how to like regulate themselves and what to do and like, you know, another thing introduced stimming to them, like some, you know, quite often you have situations where
00:56:05
Speaker
teachers all try and suppress their stims. But more often it's, they don't introduce things. It's not like they go and say, Hey, would you like a video or should we get some lights for the classroom or should we make like a sensory den or like they don't have that like proactive understanding. They're just they're thinking about all the schedule, the school schedule, we have to get this piece of work done by then and then
00:56:31
Speaker
You know, we're not wanting the child to look different. We used to get told a lot, we don't want to make them look different. It's like, we're all different and this helps me. And I think it was really interesting what you were talking about with the emotional coaching.
00:56:46
Speaker
that's a really powerful way of getting children to identify their feelings and regulate them more. I can be literal and commenting and saying I can see you look tense, I can see you're shaking, I can see you're kicking because you want me to go A and that's because maybe you're angry or maybe you feel frustrated.
00:57:10
Speaker
No, we're labelling the emotions so that actually they can do something with that and they start to connect. Yeah, what do we do when we feel this? We do this, that helps you last time. So we try that one. I think that's important. Very powerful, isn't it? It's a really powerful thing to do rather than just suppressing everything. Yeah, actually giving it a label and a name. Yeah.
00:57:36
Speaker
Well, that's a lot about like, I guess, sort of my early school experiences, but I think there's, you know, there's a big element to my story that I think is harder, more difficult, I guess. I'm talking about like my experiences sort of around my secondary school age. I guess like,
00:58:00
Speaker
I'd like I'd like to, I guess, understand a little bit more about your perspective on situations that I had, whether I was at school, around around my mental health, around that's my more my harming behaviors and sort of ideation.
Adolescent Struggles and Personal Development
00:58:21
Speaker
I guess, like, was there a point at which you kind of
00:58:26
Speaker
realized that something was a bit off with me. Was it like one day it kind of clicked and I just didn't talk anymore and I looked really dysregulated and happy or was it kind of a gradual? I think this was a tough one because we'd always kind of had this little boy that would chat
00:58:54
Speaker
talk and we could kind of guide and support and then like I said you almost went through this tunnel but went through this tunnel backwards but all of a sudden you kind of left we lost you yeah and it was almost like that like an instant without me even realizing that we'd lost you and I thought
00:59:18
Speaker
it's teenage years and everybody used to say oh it's it's teenage, it's hormones, it'll be fine. Whereas I've done a lot of reading and I knew that with VASPA just you could develop mental health difficulties because of high anxiety, social demands and so forth. But I thought you know what would have been supportive? You know it comes from a nice family and
00:59:44
Speaker
supports, if he knows what people around him, he's fine, you know, he's just been a teenager. But actually what I didn't see was that you could not find your place. You just did not have your place. In the world you did not know where you fitted, so you went from
01:00:06
Speaker
finding your autism diagnosis a relief to absolutely despising it and not wanting anything to do with it and moving as far away from anything like that as possible including talking to myself with you dad and people that were close to you, you kind of shut down. The first time I knew about your harming was, you used to be a brilliant swimmer. Yeah, yeah.
01:00:33
Speaker
all of a sudden you didn't want to go swimming and yes I didn't. We thought it was because of the sudden light coming through but actually which was probably one of the hardest things for me as a baron was you were actually harming and again it selfishly
01:00:57
Speaker
You kind of put yourself as the blame for it. Selfishly, yeah, probably. I didn't quite understand self-harming, I didn't. I kind of knew that how to let you do it. And as a parent, that goes against the grain completely, because you want to protect your child and make sure your child's okay. But actually, I have to just
01:01:25
Speaker
make sure all the support's in place and then you kind of move through it. I think that's one of the hardest things ever, really. Yeah, that was difficult. I think we just... The only support we had really was the school nurse. It was great, but school didn't really understand it.
01:01:55
Speaker
I was saying, didn't understand it. So still doing okay academically was nice. You were still careening ahead and that was fine as long as you were performing academically, you know, actually it's not, you know, a priority that you, was that okay emotionally and that didn't seem to be a priority. So I thought there wasn't a great deal of support out there apart from camps and you got rivers.
01:02:28
Speaker
wouldn't talk to us as a family. To be honest I didn't really say much to her either. Which was funny, it was not criticism, you know, you had to go through that process didn't you? But I didn't find it very funny. There was little guidance and support as parents, there was a very little guidance and support for you as a young person if I'm honest, it's better now.
01:02:53
Speaker
And I think if I'd have known about social care and how they could have supported at the time, maybe I would have gone down that route to get you a PA or support. But I think there was always a stigma with social care, that actually social care is a really positive thing to actually add support to the family, you know, and to make sure that
01:03:24
Speaker
There was a network around you and around the family. Was the person who was supporting me, were they autism trained? Like, did they know much about autism? No. Autism training just didn't really happen at that time at all. No, no, because I just, you know, obviously I look back with all the knowledge and the research that I've done in adult life and stuff along the lexithymia and cognitive empathy and
01:03:47
Speaker
Everybody's doing what they're supposed to be doing.
01:03:52
Speaker
all sorts of different things. Never was never really touched on or used in the in the context of support that I was getting because that I'd come away with these sheets of what to do, like when I'm anxious or what to do when I've had low mood. And they just, they just didn't work because, like,
01:04:16
Speaker
How am I supposed to regulate my anxiety when I don't know that I'm anxious until I'm at the point where I'm having a meltdown or a panic attack? It's like, it just didn't work for me. And I really felt sort of during those sessions, I didn't talk to them very much at all. To be honest, I didn't open up about hardly anything because it just kind of felt a bit, I just felt like they didn't really understand me.
01:04:46
Speaker
And I didn't understand me, but I knew that they couldn't really offer me anything that I felt was... I don't know. I didn't feel like they could offer me anything that would help. I think there's some stuff around methods to stop with the harming behaviors, which kind of worked a little bit.
01:05:13
Speaker
Now it's kind of like one of those situations where I thought I had to kind of go to these and let them know that I'm okay rather than to talk about the feelings that I was having. I think that also there was a lot of bullying going on at school that you again didn't share. No I didn't say that. And actually through your podcast we've kind of got to know about it and sometimes they're a bit heartbroken because we didn't know because
01:05:44
Speaker
He didn't want to share it, right? I mean, you said he didn't want to share it. No, I didn't tell anybody about anything. I even liked my friends about the bullying and things like that. It was more like... It was... Skulls should have picked up on that. Really, there should have been more vigilant because of your autism, really.
01:06:03
Speaker
The only thing that Score really did that was quite helpful was they allowed me to go to the special needs department area that they had. But they didn't do anything with me. They didn't support me of anything. They just let me sit in there and have a meltdown. Now and again, I talk to some of the teachers and stuff. But it was never something that was proactively given to me. I had to seek out the support from
01:06:32
Speaker
the teachers. Some teachers are really bad with understanding my difficulties and allowing me to like go outside when I'm having issues with my sensory stuff. Some teachers were great and some teachers were not so much and I remember one of the
01:06:54
Speaker
One of the issues that I had, particularly around PE is that I didn't like to get changed in front of the other the other kids. And so I'd always wait until the end of the thing to get changed. And I'd always get like told off by like the teachers when I came late. No, I didn't know that. Yeah, because I was so hyper vigilant about the you know, the boys, boys changing rooms. They're a bit rowdy and
01:07:22
Speaker
you know, I was in the top set of PE, so I was with like all the kind of popular footbally kids. And I was just kind of constantly aware of just like, that stuff opened to a point where I realized that when everyone started leaving, I was like, Oh my God, I haven't got changed. And I'd always get told off by like, the PE teacher's guy, Come on, Tom, like, you know, yours late. And
01:07:45
Speaker
A sense of urgency. No. And I hated being. And it's weird that I hated being. I know, because you did so well. I know. I think Taekwondo would be part of a team, really, turning things around for you. Yeah. It was kind of a bit of a random thing, wasn't it? Trying something else to take over from the swimming.
01:08:08
Speaker
Just because her like dynamite. Yeah, she went into it because her special interest has always been sort of... Japanese-y. Pokemon, Yuki, Japanese. And you went to your secondary school because they did an exchange. If you actually went on the exchange, didn't you? Yeah, to Japan, yeah. That was amazing. It was around the time that the Fukushima incident happened, wasn't it? So we were having an exchange program with the
01:08:36
Speaker
school in Fukushima and it was a bit hard. It was a lot different to like what was planned but it was good. It was a good experience for me. It was one of the only times that I really felt like accepted by a group for like in a long time because the Japanese students they were like really impressed with like my academic stuff and they're really impressed with my Taekwondo. I was like oh my god I just never get this like in my school and it was kind of like
01:09:07
Speaker
wow like they actually see me and they want to talk to me it's like it was um i think that was the most that's how it should be that was the most transformative thing for me and i was talking to um
01:09:19
Speaker
uh, something recently about like this, I think I was talking to Timmy about the, the sort of how the American schools work versus British schools, because in like the American schools, like if you do well academically and you, you go to sports, you're like instantly just the popular person. Yeah. Whereas in, in the, in the UK, it's like not like that at all. No, no, it's not. Sometimes the opposite. Yeah.
01:09:49
Speaker
But I think your Tae Kwon Do, I mean you tried a few kind of martial arts. Tae Tae Kido. Yeah, you did. You very tried karate and then eventually Tae Kwon Do and you just, that was it. You just took to it and it kind of, the exercise and the routine and
01:10:11
Speaker
The formality was around it as well. It was good because it kind of helped your mental health but then of course you took it too far in terms of doing too much exercise, even brushing your teeth you'd be doing squats and kind of... Yeah I was really obsessed with it. And also there were separate categories you had to be in and lose weight for and you lost a bit too much weight and then
01:10:37
Speaker
So that was a bit healthy, but all the, but you faced a lot going into competitions and so forth. I've had like a lot of meltdowns and panic attacks before. You had meltdowns before, but then you would use mindfulness and kind of focus and time. You were amazing, you've achieved so much.
01:10:57
Speaker
And you and you and dad have been like amazing with like helping me get to like, cause they're Taekwondo clubs, like the sport Taekwondo clubs. Cause I started like a traditional one, like around Harrogate. And then I think, you know, um, one of our friends kind of encouraged us to kind of.
01:11:13
Speaker
go to a sports place, try it out. They kind of headhunted me and, you know, started training there. We used to like travel back and forth after school. Yeah. Two hour round trip to train. I don't know. I felt like I kind of I remember my secondary school as secondary school experiences.
01:11:42
Speaker
feeling kind of worthless. I didn't feel like people really saw me or found me interesting. I had some kind of passion or ignition to make myself better all the time in every setting that I wanted to. I always had these goals because
01:12:10
Speaker
you know, your goals and your meaning and the reason why you do things that kind of separated from how you feel. Like, if you're looking to be happy all the time, it's not always something that you can do, but you can always have a goal or a meaning that you strive to do. And I think that's what Taekwondo and what the academic stuff was about. So I was like, all right, I'm going to prove myself.
01:12:37
Speaker
you know, I'm a good person, I am good at stuff. And I kind of thought that, you know, when I started getting awards and medals that people would, I guess, want to talk to me more, be more social. And that did happen within Taekwondo. And with the teachers, like in the top sets and stuff, but not like with the kids at school. So I always just felt like,
01:13:06
Speaker
every time that I went to school it was kind of like a right this is a task and any time that I was actually in lessons or was in the library revising or researching like I felt good but then it was the stuff around it that I just couldn't cope with and I tried to be social now and again I got involved in different groups but I was very much like a drifter like I didn't really have like a
01:13:34
Speaker
like a best friend or like someone that I could rely on or something that I could, you know, talk to about my feelings. Which I think I found really difficult. But was nobody you could really trust? Was there at that point in terms of talking? No, not friends, not people in my social circles.
01:14:00
Speaker
And it was a hard time, it was really hard on you and bittersweet with all the Taekwondo and the positive things and the travel rates. So you learnt to be more independent because you were traveling to different countries and working with the team, working with the team and that kind of set you up. Oh with Taekwondo, yeah.
01:14:23
Speaker
we always kind of give it a go, Tom, you know, that we did the prep around it way and try to kind of fight the best way to kind of support you to do those things, even though they're a challenge. I think that was the good thing about you is you would always give it a go. Well, you mean you taught me from a young age to give stuff a go. We always said,
01:14:47
Speaker
have your autism in your back pocket kind of thing if you need it but don't say I can't do it because just give it a go you know if you don't want to you don't want to but just try it so it feels like a lot of a lot of parents a lot of people kind of going like to the two extremes they're ever like
01:15:09
Speaker
They can't do anything. So we're not going to expose them to it. Or they're like, they have to do everything that's expected of them. And they have to do all these things. And if they don't do it, then that's a bad thing. And that they should be punished or they should be, you know, whereas with with you, you know, growing up with you is my moment was kind of like, I was exposed to that stuff. But then if I needed to write, I could exit.
01:15:38
Speaker
and it wouldn't be like an expectation or an issue that I couldn't cope with it. I think that that's the kind of dynamic that really worked for me because I still got the experience of it, but then I felt safe enough to exit if I... I was quite often will say to kids, right, if we're going to commit to this, we're going to do it week after week. Yeah, week after week, you have to. Actually, it doesn't work with older, maybe with my younger son, it did, but not with new times.
01:16:08
Speaker
Absolutely. But I also recognise that some parents will really struggle with their children with autism going to activities and doing things like that because maybe you're on your own, maybe your child has no sense of danger and that kind of thing and that is tricky. So I do recognise you can't always do that with your children.
01:16:32
Speaker
No, but it's about the adjustments though, isn't it? It is doing something that challenges them a little bit. Yeah. I bet. But it's not so exposing that it just causes them to find life just overwhelming. Yeah, because life is life and you have to have little tasters to know that actually
01:16:55
Speaker
I know how this is going to go. So the next time I do it, whether I like it or not, I know how predictable it's going to be. And eventually I'll be able to cope with that because I know about that and that experience or that sensation and I can deal with it more. So it kind of things get worse before they get better, I guess. And it's writing it down sometimes. I hope you guys can hear me okay. You're doing great. You're doing great.
01:17:24
Speaker
an awful voiceless. Well, I mean, going a bit further, because I know we were talking about how it was hard to get me support, like, in an ideal world, what would you have wanted for me? Or what do you think would have been helpful, either from the school or from mental health systems?
01:17:53
Speaker
I wouldn't want to coordinate a team around you and us as a family that were trained in autism, that were trained in sensory, were trained in mental health. So it's not kind of one size fits all, kind of had the chance to get to know you and kind of fed that back into school and into the family as well. So it was more joined up.
01:18:23
Speaker
I think that would have worked better at all. So I think which is really powerful and particularly in schools is peer awareness and other kids, you know, so you identify this child as being bullied for whatever reason and just give it the obvious or being their voice to say, actually, this is the reason why this is what you can do to help.
01:18:52
Speaker
is what you could do to support them and kind of turn it on its head a little bit. So that's something else that I found with my teaching as well. But I've done in primary schools before with teachers, the child has always become more powerful and kind of has a voice and is able to change things because whether or not they're able to tell their story
01:19:19
Speaker
what they find difficult, if other children are aware, then they don't, it's kind of more, I hate to use the word, but more normalized, and then it just becomes accepted, you know, and acceptance week, that's for autism, really. I think it would have been really good for me to have like a, like a, like a role model that was autistic that, you know, like when I went into, into schools and,
01:19:48
Speaker
seeing the kids and stuff.
Achievements and Mental Health Advocacy
01:19:52
Speaker
No programmers, no films, nothing. There was Rain Man, wasn't there? And that was it. So everybody thought, everybody that was autistic behaved like Rain Man. And that's just not the case of very stereotypical. But even just someone that I could, who was older, who
01:20:09
Speaker
doing stuff that I wanted to do and had their life sorted and their adjustment sorted in daily life and just someone to talk to about being autistic, I think would have been really helpful. But I think a lot of autistic people, we just have such a hard time in life, it's hard for us to get into those positions where we're able to be active role models for
01:20:37
Speaker
for kids and I think it's changing overall, I think. It's taken a while, hasn't it? But I think it is changing and I think kids are kind of looking, you know, and finding their place easier, you know, for diversity. But it's taken a long time coming, isn't it, really? Yeah. There's so much like work that needs to be done for like preparing autistic kids for
01:21:08
Speaker
manipulation and bullying. And I don't know exactly how the best way to go about doing that is, but I think it just it definitely needs to be tackled because we know that like long term anxiety in formative years leads to development of depression and mental health. You know, it's it's something that really needs to be tackled. I think that that bullying and social isolation and the sensory elements, the social elements at school, the
01:21:37
Speaker
absolutely just so impactful on like someone's long-term mental health you know it's it's something that can you know follow you in to add a life you know to find every aspect of life scary is a really i can't imagine what that feels like really just find everything and everyone and every sound and every feeling really scary i'm about to it's about to have an
01:22:07
Speaker
on your mental health and your well-being. So I think it's so important that we have that not awareness. Because awareness is just that sort of lip service saying, oh yeah, I know about autism, I've read a bit about it. It's about doing something about it, actually being proactive and saying, look, you know, there's a kid over there, or there's a mate over there.
01:22:34
Speaker
there's a kid over there that actually people are bullying or they're not being supported and actually just going, look, if you want to join in, you know, come and join in with those copy parts of it. I want children, you people, I've just got so much to offer as friends, as children, as colleagues, you know, it's just so much to offer really.
01:23:02
Speaker
Totally. Yeah, completely. Just, you know, sometimes, really. I mean, I know what we talked a little bit about uni and travelling and taekwondo and stuff, but what did that feel like? Because obviously I was putting myself out in various different ways that, you know, the anxiety provoking, like, what were your, like,
01:23:30
Speaker
thoughts about about me doing those things sort of in the media and like what what how did you feel when I did those things and I actually succeeded and you know I went to the Commonwealth and I got gold and I went to the Nationals I got gold and I represented my country like how did how did that feel for you
01:23:52
Speaker
Well, I was incredibly proud, obviously. I mean, the Commonwealth was one of the most overwhelming times, but the fact you got Man of the Games as well, you were Man of the Games because of your humbleness and your sportsmanship and the way that you were so fair just said everything to me about
01:24:16
Speaker
the nature of your character which we were really proud of and that's nothing to do with you being autistic or not autistic. That's to do with who you are as a person so that's amazing really.
01:24:32
Speaker
You were capable of going to university, but I didn't think you would choose a city. I was surprised you were choosing a city. Because of the program, the industrial experience. I found it when I was quite young, like when I was looking at unis before I came to the point where I was doing my levels, because I was like, I want to be a scientist. But I was surprised that you were choosing Manchester because it was so busy.
01:24:58
Speaker
So we kind of, because I remember the first time we went to visit the Uni you wouldn't, you didn't want to kind of go anywhere near it. So we had like a 15 minute visit and then we got back in the car and went home. But then the next time you kind of got out and when it looked round we kind of did it very slowly. But
01:25:22
Speaker
You were so independent in seeking out your support that you needed at university. You got a little support.
01:25:33
Speaker
Yeah, it was tricky, wasn't it? In terms of deadlines and timetables and organisation, because we both know you're not. No. It's really tricky for you, isn't it? It's not like I can do it, it's just that I don't leave myself enough energy to do it. I know. It kind of takes a small part, doesn't it? Yeah. So, you looked after yourself, you fed yourself, you shopped, you lived independently and
01:26:03
Speaker
You learn to drive as well. You learn to drive, but you don't like driving. Do you say you haven't driven? You learn to drive. Driving is so unpredictable. All other people are unpredictable, so that's really hard and sensory.
01:26:21
Speaker
was really difficult, but yeah, you succeeded and then you went to Thailand which was an even bigger thing and that was like... Did I tell you about it before or did I just tell you that I'm going to Thailand? No, you told me about it, obviously. Obviously, you'd applied for this placement. Yeah, but I just applied and then... Yeah, you did. It was like...
01:26:43
Speaker
Are we going to prepare for that? It's the same with getting like a tattoo and stuff as well. I just, I said, oh, hey, that's not a tattoo. This was the guy that didn't like needles. I didn't like, I don't like needles. Like you were having a tattoo. She's gorgeous. But yeah, it was just, you've blown my mind with what you've achieved really, you know, and the things that you can do and you haven't anything to stop you.
01:27:11
Speaker
or anyone really, you know, you've got to... I've always gone for like the most difficult things as well, haven't I? You've always challenged yourself, which is great, because it can show up for your comfort zone. And speaking of hardships that have come with that, we talked the other day about this rollercoaster, so you have real highs, don't you? Yeah. And you support me a lot with my mental health and stuff, because I do get like,
01:27:41
Speaker
you know, I talk about on the podcast quite a bit where I'm, you know, like, you know, although I appear and I talk well, and I, you know, seem to be producing loads of content all the time and doing all these things, like, but I'm not always like that. I'm not always on top of things like
01:28:00
Speaker
there's been lots of situations where I haven't been able to get out of bed for like months and you know, we'd have to work up to me like going outside and like the eating and the agoraphobia and you know, I think there's still some things that I struggle with like, I find the really difficult part of adult life is managing friendships.
01:28:30
Speaker
That's something that's kind of come up, you know, I kind of come out Michelle a bit and I've learned a bit more about, you know, you know, I'm good at making friends. It's just the, like the maintenance over the course of like the year or something around like texts and setting up events and things to do that I find really difficult. You don't like kind of the in between the small talk and things like that. You don't do that very well.
01:29:00
Speaker
You've got a lovely, a lovely girlfriend. You've got some really good friends that are stuck with you and kind of you get friends, I get you and it just kind of works, you know. And it's not like, even like in any relationship that I have, it's not like they're doing it for me, like that I need to have this friend, like because, and it's difficult to be, to be my friend, like I,
01:29:30
Speaker
I offer a lot to other people in my life as well as being supportive.
01:29:46
Speaker
If there's one thing I could take away, would it be the autism? It would be the mental health difficulties. I would just like to pluck that from you and just have you been on a level rather than having to cope with your sit-downs and that's hard to watch sometimes.
01:30:06
Speaker
very resilient. You always come back up again and I think that's amazing. You get stronger and stronger each time I think. And then I go too far and then I have a burnout. Yeah you do. I'm working on it now. I'm okay. I'm working on relaxing even though I find it very annoying.
01:30:28
Speaker
It's like, I have a bath, and I don't want a bath. No, just stop. It's hard for you to chill, isn't it? Yeah. But I think that's also one of the reasons why I do well at things, because I just... Yeah, you're very focused. Very focused. Very single channels and focus. Yeah, absolutely. That's good. That's good in a lot of ways. It helped you.
01:30:52
Speaker
But I think a lot of like... I wish I had that sometimes. It's a real skill. It's a real skill, isn't it?
01:30:59
Speaker
I think it's just because of like the experiences that I've had of not being very good at something like Taekwondo and then working day and night and really hard over the course of years and then succeeding. I think just like having that experience of going through that process has helped me a lot with anything that I do. Like I still get like
01:31:24
Speaker
you know annoyed at myself for not for not achieving targets that I want to achieve on in a certain time frame but you know it's still you know I still get disheartened and like my confidence isn't very good and I still feel not good because of my mental health but like I still have yeah I don't know there's just I still have like
01:31:52
Speaker
some reason I managed to maintain the mentality of just keeping going with stuff it's it's a bit weird actually I don't know don't know how but also I think the big difference is you talk about it now yeah whereas when we asked you you didn't talk you were close but now you do talk to us I mean you do you do say look I'm not feeling great or I don't feel safe or
01:32:19
Speaker
We'll talk about it, which is absolutely amazing. And I think everybody that has mental health issues should be able to have a voice about it. They should be able to have somebody that they can actually say, look, I'm not OK. We talk about a lot in modern society about men.
01:32:39
Speaker
you know, men have a difficulty with opening up about things that they struggle with and mental health and stuff. I think it's really interesting that people kind of view openness and vulnerability as weakness. Whereas like, it's, it's the hardest thing to do. Like, it's not an easy thing to do. And it's like people even, you know, it's, it's crazy. I feel like
01:33:05
Speaker
That's like one of the biggest lies that it's strong to ignore your feelings and continue with stuff because it just doesn't work long term. And we see that reflected in like the really bad negative statistics about men not seeking help and ending their lives. It's one of the biggest contributors to death. Four autistic people, both also men under like somewhere the age of 40 or something is crazy.
01:33:37
Speaker
It is something that I think needs to have a shift around. But I think it is slowly the push and pull of different online spheres talking about different values and things. But I'm hoping that we will get to a point where
01:33:56
Speaker
You know, it's seen as a strength to talk about things. And not a plea for pity. Or I think that's a big thing. You know, when I come in, I say,
01:34:14
Speaker
i tell some people i'm autistic they're like oh i'm so sorry and they're like oh so what do i have to do and like you don't have to do anything it's like i'm not asking for support i'm just telling you that i'm not just like you know that why i do particularly yeah that's interesting pity me and i'm so sorry no well it just happens you know it doesn't bother me it's just like
01:34:39
Speaker
I just find it a bit funny. It's like, and you say, say someone or mental health's awful. I have quite bad mental health conditions. Like, Oh my God. Like, it's like, yeah, but you know, it's something that I've experienced for upwards of 10, 12 years in my life. So it's, it's not like, yeah, there's, there's a big stigma around that as well. I think. There is, there is.
01:35:07
Speaker
Well, um, we've got one last question. I know that we've been recording for quite a while. You probably probably want to get off. Yeah. I'm going to go for a better gym workout after I think. Just do some legs. I'm not. I'll go for a gym workout. Um, so I guess, I guess like.
01:35:33
Speaker
you know, obviously we've touched on a lot of different things. And I really wanna end up with, end on something that's perhaps a bit more akin to like a learning experience for the people listening and perhaps something to take away. But what message or lesson do you wish, or lessons that you wish parents would,
01:35:58
Speaker
learn or incorporate into how they view autism, how they support someone who's autistic, whether they're going for a diagnosis process, whether they're thinking about it, whether they are struggling with different aspects of being a parent of an autistic person. I think one of the main things is have faith in what you know about your child.
01:36:28
Speaker
Go with your gut and I think one of the main things is in terms of education. Yeah, the learning, the learning is important. Make sure the school is also developing your child's social skills in a very structured way. The safe way.
01:36:51
Speaker
a safe structured way because you might be doing it at home but we know that our children with autism don't generalise their skills across different environments so they always, so teaching those skills in different environments is really important to generalise it so make sure what you're doing at
01:37:15
Speaker
they're doing a school in vice versa. It's not just just context dependent things. Yeah, because I see that because I find especially like, talking to my manager about like, how I am on podcasts and social media and how I am sort of in work, it's like, I do just, I don't necessarily transfer the skills that I have outside of working into work and vice versa.
01:37:46
Speaker
So yeah, I think that's a good point. I think also if there's anybody you can watch it. I've seen Ross Blackburn, who's an amazing woman with an autism and very academic, and she's a great speaker. And one thing I always remember her saying, I only know what I'm told or shown. Yeah.
01:38:13
Speaker
So don't assume that the child just picks things up automatically. You have to teach it really literally just like you do with the emotions and the emotional coaching. So just make sure that you've always got in your mind that just because she gave a really good example that she went to the seaside and she was
01:38:40
Speaker
She got some fish and chips, and she was, her carrot was eating fish and chips with fingers, and she was like, where's the knife and fork? We eat with a knife and fork, and they said, oh, this is a finger's type, it's a fish and chip fingernail. She said, but I would never have known that, because I had not been taught that in different settings. I thought,
01:39:08
Speaker
you know, we're told to hold our show and it's really key and really important message to remember for teachers and parents and anyone. Yeah. So I think that we do tend to like that kind of more transient learning with things. Like we really need to like have rules, even with exams. It's like, I remember I was told to do like loads of exam papers and I would always do those exam papers.
01:39:37
Speaker
It's at uni and stuff and go through them and make loads of notes.
01:39:43
Speaker
Because the exam questions were different, it didn't really make any difference because I didn't know exactly what they were asking me to do. I couldn't just learn. I wasn't able to pick up on cues of things that they were asking me to know what exactly they wanted me to talk about.
01:40:08
Speaker
And I found that in situations where there was less of those essay questions and more of those like smaller questions, you know, I asked them, and those are easy. But since it came to like the essay stuff, I just didn't know where to like, where to start and what they were asking me. Like if they said, you know, yeah, talk, you know, they'd ask a question like, talk about inflammation in the body.
Education System Critique and Podcasting Experience
01:40:32
Speaker
I'm like, right, okay. And in what sense, like,
01:40:38
Speaker
Do you want me to? It's not specific enough. Information in diet or culture? Do I talk about it? Do I talk about it or do I write? Oh yeah. Or do I discuss? I think I got that one. How do I discuss something with myself?
01:40:58
Speaker
Whereas if they said like, talk about the inflammatory pathways that are related to the use of ibuprofen, and how that impacts nerves and how that impacts this and this and that. And I'd be like, Oh, cool. Awesome. It's a boundary structure. Yeah.
01:41:18
Speaker
And then I just found that with exam questions, I just write and write and write and write. I'd be like trying to pump out words just so that I'm touching on every single possible basis around this thing. Well, it obviously worked. It probably exhausted afterwards. I mean, it could have been a lot better if they were more specific. But again, that's not something to bear in mind. It's not an adjustment. We just get more time.
01:41:47
Speaker
That needs to change, definitely, the education system, right, around those questions. Make more visual as well, make more visual. That's quite important, isn't it? Well, um... There's a lot of learners anyway, there's a lot of learners.
01:42:08
Speaker
Well, we've touched on a lot of different aspects. We have. I've squeaked my way through. You're very nervous at the start, weren't you? Obviously. It's not my natural habitat. No, I suppose not. But as with all podcasts, it tends to be like first 10, 20 minutes, it's a bit anxiety provoking when you get used to it.
01:42:38
Speaker
I suppose so yeah but I really appreciate you coming on to the pod to just talk about my life from a different angle. I hope that you guys
Music Segment and Listener Engagement
01:42:55
Speaker
have found it useful to I guess here
01:43:00
Speaker
more about the things that I talk about on a regular basis within the podcast from, you know, someone who's experienced it from that different angle, that different, um, I'm trying to think of another way to say angle, but I think that's, that's probably perspective. Um, but yeah. Um,
01:43:21
Speaker
Thank you so much. I want to ask you a question. Have you enjoyed your 40 Auti podcast experience? I have, most definitely. Most definitely. I have, actually. It's been good. Yeah? It's been great. Good. Good. I hope there's lots of people watching. Yeah. Yeah. I'm sure they're well. Tell the world. Yeah. So usually, when we finish up round about the end of the podcast, we'll do what's called Song of the Day.
01:43:51
Speaker
And I didn't ask you to think of a song, so it's kind of like a last minute podcast. I remember I can edit stuff, so you can think about what you don't want to say about. Usually we'd go for a song that either means a lot to you, something that you like, or something that I guess is related to the topic of the podcast. Is there anything that kind of springs to mind? So if there is this pink, perfect.
01:44:23
Speaker
Watching Pink, I'd love tickets. Yeah, yeah. The regular listener of the podcast, Pink. There are a few swear words in it, though. No, yeah. Is it the effing perfect? I think there's another version, isn't there? Without the... No? Radio edit. It's the radio edit. Effing perfect. Radio edit. No, I'll put the explicit one in. Sorry, everybody.
01:44:52
Speaker
I don't think I've actually heard about that. I heard that one before. Where is my playlist? There we go.
01:45:03
Speaker
So that will be added to the Song of the Day playlist, which is always down at the bottom of the description. If you want to check that out, it's a compilation of all of my guests' songs from season two, songs that mean something to them, some songs that are related to the topic of the podcast that we talk about. Really highly recommend you go check that out. See all the range of different tastes in music and such.
01:45:31
Speaker
But yeah, if you have enjoyed this episode of the 4080 podcast and you want to show some love, I'd always point you to like, subscribe, do all of that YouTube-ery stuff. And if you are listening to this podcast on Spotify or a podcast, so Amazon, I think, is something that I'm done. Audible.
01:45:52
Speaker
Give it a rating. That will help me a lot with getting this podcast more out to people who will find it useful and find it something transformative and help them out with their autism journey.
01:46:08
Speaker
And if you want to stay up to date with my life, the things that I do, go over onto my Instagram at TomatendlyUK. I do have different social media platforms that I'm under the same name on, but Instagram definitely is the place to go if you're looking for daily blogs, reels, videos, updates on my life. That is the place that I usually reside. And yeah, if you are looking to
01:46:33
Speaker
Talk to me if you want to book me for a personal consultancy session, coaching, whatever you want to call it. My link's always down in the description under all my links. You can see it like a link tree. You'll be able to see all the stuff that I do. And get forwarded to any of those things that I've mentioned.
01:46:53
Speaker
And yeah, I won't ask you for any links, because I know that you're not a social media person, but... I just watch you. But if you've got any questions for my mum, for Michelle, just send me an email. Hi, I'm Tom and I'm in the UK. I'll get them over to her and be able to reply to that.
01:47:16
Speaker
Absolutely, if I can be of any help. Is there anybody out there? Just drop us a line. Yeah, you're probably going to get that because there might be quite a lot of people asking about that. But yeah, I hope you have enjoyed this episode once again.
01:47:38
Speaker
stay tuned for the next one next week, Monday, try to come out about 1pm on Spotify and Apple and all that, about 5pm over on YouTube. If you want to watch some shorter versions of the podcast, some of the clips I do, head over to YouTube.
01:47:57
Speaker
Yeah, that's all from me rambling my head off at the end of a very long conversation with my lovely mother. Yeah. Thank you so much for coming out to speak, Mum. No problem. I've enjoyed it. Thanks. All righty. See you there, guys. Bye, everybody. Bye. Bye. Bye.