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Non-Verbal To Professional Autistic Speaker
598 Plays1 year ago
How did Paul develop speech after 7 years of being non-verbal? What visual and speech disorders occur in Autistic people? What is it like to have a visual disorder?
Paul Isaacs (@staypuft12) is an autistic public speaker who was late diagnosed with autism and OCD at the age of 24 in 2010. Paul was functionally non-verbal till the age of 11, suffering from a brain injury from cerebral hypoxia before birth. Within this podcast, Paul details his life with visual and speech disorders, and how others can better understand the experience.
My Links - https://linktr.ee/thomashenleyUK // Paul's Blog - https://theisaacs22.wordpress.com/
Dbud Noise Cancelling Adjustable Ear Buds (20% OFF with code: THOUGHTYAUTI) - https://dbud.io/thoughtyautipodcast
Kicking off the episode, Paul explains his history with Autism and OCD. Diagnosed at the late age of 24 he was gifted with a very positive experience, something not common to many.
Paul found a role model in a woman named Donna Williams, who shared many of his experiences in life, recounting her inspiring yet tragic life in great detail.
Starting work at 15 due to his parents increasing concern about Paul's isolation in his room, he had a very ego-centric approach to communication with many processing delays. The two bond over their shared confusion and difficulty identifying bullying, gossiping, and gaslighting within the school system and workplace.
Non-verbal until age 7, Paul describes the numerous visual and speech disorders he was afflicted with due to brain damage inflicted during a placental abruption and consequent cerebral hypoxia. Doctors originally believed he was blind, but eventually identified a few causes of his social, kinaesthetic, and sensory-sampling behaviours.
Paul is hemiplegic, which impacts his visual perception, language, proprioceptive awareness, and some of his motor functionality. His visual agnosia left him unable to register anything he wasn't directly focused on, like extreme tunnel vision... meaning his ability to create word associations to objects in childhood was difficult.
In terms of speech, Paul was 80% meaning deaf. The experience was described as perceiving large amounts of fragmented information, and couldn't interpret language as anything but meaningless phonics. His anomic aphasia made it difficult to find words to say, which resulted in him becoming highly echolalic.
Paul and Thomas describe their shared difficulty with Alexithymia in childhood and how their feelings manifested as physical illness. Paul describes the idea of mergence, something common in infants who are in a state of sensing, rather than interpretation... this mergence was remarked by Thomas as being eerily similar to goals of meditation and the experience of ego-death many chase.
Paul and Thomas do differ in some respects. Thomas describes his default mode network or baseline activity of his brain as being constant and often stressful; Paul doesn't tend to think at all unless baited by OCD
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Transcript
Thomas Henley's Instagram Break
00:00:07
Speaker
Good day, and welcome back to the 4080 podcast with your host, Mr. Thomas Henley, of course. How are you guys doing? A little update from me as I did with the last couple. I am currently taking a long, long break from doing Instagram posts consistently. I've been doing it for the past, like,
00:00:29
Speaker
seven months or so. And as you may know, I am currently going through quite a severe kind of mental health period, burnout, whatever you want to call it. And so I think taking a break for me has, you know, is kind of allowing me to take care of myself a little bit better, focus a little bit more in self care. I've been trying to meditate, get on top of my food, nutrition, trying
00:00:54
Speaker
socialize a bit more and it's generally been quite nice so I am trying to like stop myself from getting back into work mode until I feel completely all fine all good which is very difficult for me as you may know.
Autism and Visual Disorders with Paul
00:01:11
Speaker
But focusing a little bit on our podcast today, we're going to be talking about autism and visual disorders. Basically, I met my my guest Paul alongside Olivia at Olivia's World. I went on my podcast to I think just talk talk generally about my experience with autism in a very kind of laid back casual chat as as a very much like with these these kind of podcasts. And
00:01:41
Speaker
Yeah, so we're going to be talking about the different visual disorders that my guest Paul has, as well as their experience being non-verbal till the age of seven. We're going to talk about some of the difficulties that those visual disorders may come with, as well as what might be, what have
00:02:05
Speaker
has been helpful during their day. I'm into my words today. And also, I guess what Paul would like people to understand more about about visual disorders. So introducing my guest, Paul, how are you doing today? Yeah, I'm doing very well. Thank you.
00:02:25
Speaker
Yeah. Good, good. It's the weather's been not the best over the past over the weekend and not not very much today either. No, not really. No, not at all. But as I said prior to the recording, I do I do like to get out and do things regardless of what the weather is doing unless it's hot, unless it's 40 degrees like last year. It was like a war. Yeah. But yeah. Yeah, I'm doing well. Thank you.
00:02:55
Speaker
Good, good. Would you like to give everyone a little bit of an introduction into who you are? Maybe a little bit about your kind of when you were diagnosed or when you found out that you were autistic.
Paul's Autism Diagnosis Story
00:03:10
Speaker
Yes, I can give an introduction there. I'm 37 now. I was diagnosed on the autism spectrum autistic. Whatever your preferences are, I know there are many and there is many have grown since I've been an advocate. Words have certainly changed. Yes, I was diagnosed in 2010 at the age of 24. It was an assessment in Headington near Oxford.
00:03:39
Speaker
My parents were present to give developmental history, etc. He's a very kind man. He's called Mike Layton. He won't mind me plugging in. He lives in Bristol now. Got a family. Two kids, I believe. But yeah, he's a very kind, very empathic, very sincere man. And I think that helped with the diagnostic process.
00:04:07
Speaker
He viewed me as a human being, as an individual, not just a thing that's sitting in a room. I've heard a few stories from other people who've been diagnosed where they have felt like that. One friend springs to mind, which was not very nice. So that gives a load of connotations afterwards. So I'm very thankful for that in terms of
00:04:35
Speaker
the overall experience and then building up from that.
Adapting Public Speaking Skills
00:04:40
Speaker
I started public speaking prior to my formal diagnosis or training to
00:04:46
Speaker
speak publicly in 2009 and that went very well. We've done about three or four sessions with other people on the spectrum speaking about their experiences. It was a 10-minute speech, so I had to talk about my early life experiences. Very quick.
00:05:08
Speaker
Very quick, very clipped. Yes, indeed. And then slowly, what I realized the thing that initially was supposed to help me was not actually reading pieces of paper. This was actually restricting me. And actually, as soon as I threw them away on one speech, I just it just flowed much better. And then
00:05:35
Speaker
What happened over the years from 2009-10 onwards, I was just able to build up experience. I worked at a specialist school from 2010-2011 as a trainer, as an in-house trainer.
00:05:51
Speaker
I worked for an organization for five years doing training to various different places, various different contexts. So it could be charities, it could be organizations, it could be GPs, general practitioners to psychiatry store.
00:06:08
Speaker
psychologists, to social workers, the context
Impact of Donna Williams on Paul
00:06:14
Speaker
and the nuances of these experiences with different professionals and alongside that employment, I suppose, aided me with building up a repertoire of personal and professional experience.
00:06:32
Speaker
How I felt about the diagnosis was aided really by my parents. One of the first things my mother said after we walked out, when I got the diagnosis, we were walking towards a car to go home.
00:06:46
Speaker
It was quite tiring. It was many hours of talking then was that I was still a human being regardless, which was very, very, very refreshing to me. And also what connects with that ethos and that idea of being a person.
00:07:11
Speaker
an individual, et cetera, was a lady called Donna Williams, who I saw speak in 2009. She's an Australian lady. She was diagnosed.
00:07:21
Speaker
in the 60s with childhood psychosis, that's what they thought. Never heard of her. No, I know that the psychosis and schizophrenia was very much like, I think during the formation of Asperger's and Cano and things like that, there was also another lady who thought that autism was a form of childhood schizophrenia.
00:07:49
Speaker
Yes, the four S's. I don't know, I know a bit about that, what you're describing. Yes. And you're quite right in the 40s and 50s, childhood schizophrenia attachment disorder were interchangeably used depending on the profession. Childhood psychosis is what they thought autism was in the 60s, but they were actually diagnosed in it way until
00:08:15
Speaker
way into the late 80s. Yes, which surprised me. So Donna went for a two-day assessment in a hospital in 65. My mother and father thought she was deaf. It wasn't anything to do with deafness, it was to do with language processing disorder. And that was the diagnosis, the childhood psychosis. So it was, it's dated,
00:08:41
Speaker
course but it also gives you an historical context of what they thought autism was in a particular period of time and I connected with her on Facebook and a lot of her ethos and the fruit salad analogy of autism I use
00:09:02
Speaker
Sadly, she passed away in 2017 of cancer, of metatastic cancer. She had breast cancer and had a double mastectomy. Metatastic is like, you have like two, you have like benign and metastatic, which is like the metastatic is one where it like breaks off and goes around the body and like finds different sites and yeah.
00:09:27
Speaker
That's correct you've got the word correct
Nonverbal Childhood and Coping
00:09:29
Speaker
yeah that's exactly what happened to don't know it went into a spine and liver so she had liver failure but she was a very positive lady well well into the end you know she found her husband a partner.
00:09:43
Speaker
while she was dying, which I've never heard of before. She, she sorted out all these finances. She didn't want him to be alone. She even was part of a palliative care bill in Australia. So she went into a hospice to die and she died on her own terms, which is very brave. She wanted to die in her work, Chris's words of what she said,
00:10:08
Speaker
She wanted to die in her dreams, so she had what's called a driver, which I've seen with my own nan.
00:10:21
Speaker
Yeah and it was bittersweet really in the case of Chris obviously this lovely lady he was losing but nevertheless there was an element of being a bit of a warrior which she was very much through life and wanting some sort of autonomy with her death
00:10:40
Speaker
And that's partly to do with having a very dysfunctional family set up. The mother was a sexual predator and pedophile. The father was the better of the two. He was more stable. But she didn't have the sort of family background I had. So I can't imagine what it was like. She didn't gain functional speech until about 11.
00:11:05
Speaker
And being in that environment, she was really a trooper and I had great respect for her. And also, although what I've said is quite challenging to hear, as she got older, things became better, you know, a sense of self-worth, her self-esteem. She's bisexual, so she originally had a few girlfriends and then married to
00:11:33
Speaker
husbands, not at the same time, Paul first and then Chris. And she was growing all the time and evolving her theories and her personhood. And I was very fortunate to know her. And very fortunate for her to give me information and take me under her wing. So that gives you an idea of a bit about my background and
00:12:03
Speaker
Things like that. Yeah. Yeah. Well, she sounds like a very sort of inspirational person. Like I don't really have many people like that in my life in terms of I guess you could say in a sense like a role model. I think the closest that I have even even at the time
00:12:25
Speaker
would be like Dr. Meghan Neff, which is someone that I talk about a lot from Neurodivergent Insights. She's probably like one of the only people that I kind of look up to, I guess. And it's been really, really great for me to know them and to read their posts and to, you know, I got to be on the podcast recently, which was really, really cool.
00:12:52
Speaker
But what you said at the start about the diagnosis process, like 20, did you say 24? Yeah.
00:13:04
Speaker
Yeah, well, 24 is quite, I guess, old, I guess, for being diagnosed.
Challenges in the Workplace
00:13:12
Speaker
I know that there's a lot of people who are diagnosed a lot later in life, but I was diagnosed when I was 10 years old. I also know that, like, the diagnosis process, as you said, like, it's not always the cleanest, most easy
00:13:31
Speaker
versus for a lot of people there's often like a long waiting list and sometimes even when you go private you can be stuck with someone who has kind of a I don't know how to say it maybe a monolithic kind of idea of what autism is and not really pick up on the nuances of it and not give you the diagnosis which I've heard quite a few times
00:13:53
Speaker
And also I relate quite a bit to your experience with public speaking because when I got into it, I tried to start reading from a script and stuff. I thought this would be the best thing to do. Whereas obviously I had a lot of experience doing these podcasts and just talking kind of off the cuff.
00:14:13
Speaker
which actually I think works better for me, like yourself. Like just having to, you know, look at the script and you like lose your place in the lines and you have to like, you know, go back and say, oh, sorry, like trying to find where you are again and then look back up to make some eye contact with the audience and then you look back and you don't know where you are. It's not the most fun thing to do.
00:14:39
Speaker
No, it's not. And I relate to that. It was actually creating more hindrance in the end. Very similar to you. It was actually worsening. I was having to do almost like a three-way conversation, a conversation with the text, then a conversation with the memory of the text when I look up, and then a conversation with the audience. And that became far too much. And there were lots of uncomfortable gaps.
00:15:06
Speaker
Not because I was embarrassed, because I was looking down at the piece of paper. So it became much more fluid once I was able to just retain information in a way. Obviously it worked for me of just speaking and having an idea of what I was about to speak about and then just go with that which seemed to work much better very quickly.
00:15:36
Speaker
Well, have you have you always been like as public speaking, always been your like role, I guess, with life in terms of like your job or have you if you had any other experiences with with work? I think you mentioned on the other podcast on your podcast when we were chatting that you'd done some working care.
00:15:58
Speaker
Yes. Yeah. This was purely by accident that I fell into public speaking. I was working at Autism Base as a volunteer. I wasn't working paid work at the time. And all I saw an advertisement about looking for local individuals to speak
00:16:20
Speaker
for a short period of time about their life, so it was chance and luck. But prior to that, my first job, even before the care work, which was in 2008, I started working at the age of 15 in 2002.
00:16:41
Speaker
And there was a few reasons why my mother noticed that i was staying up in my room a lot and studies have shown you know isolation they've done studies in extreme induced isolation you know with people in prisoners of war camps and it takes around two minutes for
00:17:04
Speaker
neurochemistry to change, which is a shockingly short amount of time for the brain to actually be negatively affected by isolation. So if you take those two minutes and times it by how many hours you're just in seclusion, which I was, and I'm sure there is going to be a lot of people and I understand why that will disagree with what my mum done, but you've got to take into account a few things. Firstly, her generation,
00:17:33
Speaker
Different time. Different time secondly i wasn't diagnosed although she was aware that there was something so she made me work sorry if that's the audience but what what she done it was out of desperation.
00:17:49
Speaker
from a parental point of view. I mean, I was crying doing the application form, you know, she's saying, please do this, please go out and work. And I sent it off through the post and I got a suit and had about a 10 minute interview at this supermarket and I got the job.
00:18:20
Speaker
But I got bullied in the first two weeks, which was a similar situation that happened when I first started secondary school. Yeah, sometimes it can be quite similar, like the dynamics, because you're kind of cooped up with people that you don't choose. Like you just pot with people and you have to work with the environment that you have. Yeah.
00:18:44
Speaker
You're absolutely right and I worked there for five years. I tried, I mean I was trying in terms of I worked as a shelf stacker and then I worked as a baker and then I worked on the delicatessen and then I worked on the tills. This was all very hard, I can't deny it particularly the tills
00:19:07
Speaker
Lots of social interaction. Yeah, I didn't understand it at all. I was very egocentric in conversation. There were significant delays between answering and listening, so the switching between the two.
00:19:24
Speaker
they're unintentionally funny things that I'd done because I misunderstood large chunks of direction. When I worked my first sort of time on the delicatessen, the line manager said, what you do is you cut meat and you cut cheese and you stand there. And I thought, okay, so five o'clock to seven, I was doing a late shift
00:19:48
Speaker
So I cut the meat and I cut the cheese and I thought, okay, this is it, I suppose. And then these people were coming towards me and I was getting very angry with these people.
00:19:59
Speaker
And I was getting very angry that they were asking me to change all what I'd put out. And it was quite clear in retrospect, there were huge gaps in my understanding of what was wanted of me to actually fulfill that role behind the teddy. Yeah, beyond what they said about to stand about and cut cheese and meat. Yeah, and it happened on the bakery. I had this rule about it was an internal rule.
00:20:27
Speaker
that I'd clean the ovens about an hour before my shift ended. And he said, no, no, no, you need to put some more demi-boguettes. Demi-boguettes are just half-boguettes. And I said, OK.
00:20:42
Speaker
I fear for the people who ate those baguettes because they must have had a very chemically taste because I'd just put industrial cleaner in these big ovens. Wow, there's a big one and a smaller one that was used for cakes and stuff. Other unintentionally funny things, I suppose, if you were looking at from the
00:21:02
Speaker
The point of view is a comedy. I mean, it wasn't funny for me, but I do have a sort of self-deprecating sense of humor. A man came in for a muffin and these muffins were pretty poor anyway. You just start to defrost and there was no cooking involved or heating them up, et cetera. And I just got him a frozen one and I said, here you go. And he said, what's that? I said, it's a muffin.
00:21:30
Speaker
And he said, but it's hard. I said, yeah, you can wait for it to fall and then eat it. And I was shocked by his reaction. You see, it's a two way problem. So I'm thinking I've got an idea with this nothing. And I said, you can have it.
00:21:47
Speaker
Don't break your teeth. Wait until it thaws. Another situation happened more along the lines of what you're talking about with Interaction, where a lady was gossiping, and I didn't realise it was gossip, about another member of staff.
00:22:05
Speaker
and she's talking about how he speaks too much and he goes on and on and the gentleman in question came behind me of course she shut up she quietened down and I said oh we've just been talking about you
00:22:19
Speaker
Now you talk too much and you go on and on. And his reaction shocked me because I thought that's something he wanted to know. It's quite clear. Yeah, something that's okay. It's not really, from my experience with autistic people, it's not really commonplace to gossip negatively about people. Or if we do, we tend to be a bit tentative around saying anything too bad about people. Yeah, I didn't understand
00:22:49
Speaker
a few things about the words she was using. Firstly, I didn't understand it was gossip. So I didn't understand that this was information that he didn't need to know. And secondly, I thought it was information that he needed to know, not because I was being horrible or rude. I thought someone else is saying this, and I think you need to know. But it wasn't under the guise of being nasty.
00:23:17
Speaker
or tertial rude. I'm sure it came across as such and I have no doubt it did look in it in retrospect because his reaction would suggest he's hurt and I was bowled over by it and I did ask him when he walked past the bakery you know
00:23:35
Speaker
Um, why, why is this, why is this upset you? You know, earnestly, you know, why has this sharing this information upset you? And he, I suppose he was along the lines of saying, you know, this is something you, he wasn't saying exactly like this, but I'm paraphrasing slightly, but it, he was more or less saying.
00:23:58
Speaker
this is something you don't do. This is this is something you don't do. Exactly. And but I thought, well, when I'm up in that staff room for an hour, I'm hearing loads and loads of people saying, at times, I'm really quite
00:24:17
Speaker
interesting things about other people. And then they're all smiles and having a nice conversation when they're outside of the context of the staff room, which was quite... Kind of a two-faced kind of approach to sort of group social interaction. I suppose so, yes, yeah, yeah. And it just bowled me over. And it reminded me very much of school. In fact, I remember
00:24:47
Speaker
speaking to my parents at the tea table and saying about that. But I also had a lot of vulnerabilities. I mean, I didn't understand I was being bullied until my parents
00:24:57
Speaker
told me, they said, right, so what is your day doing? So what are you doing? What have you been doing today? And I would just go in a litany about, okay, I've done this, this, and this, and this. And then they would pick it apart. I said, hang on a minute. So that person said that to you. I said, yeah, they said that to me. I said, okay. And then so then what they'd have to do is take that part
00:25:18
Speaker
contextualize it and say, okay, maybe you shouldn't talk to that person so much. Maybe you should, do you know, just be civil to them, but just don't get into conversation with them. Don't share personal details. Yeah, exactly. Don't give them things basically. Yeah.
00:25:42
Speaker
It's really good to kind of hear your experiences sort of in the working world kind of around that time because I never I knew that that kind of environment would not be good for me and so I never like went and
00:25:59
Speaker
went for it and my parents also knew that it wouldn't be like a good thing for me. So, you know, my first job was kind of in special needs TAing, which like in comparison to what you're talking about is probably a lot better. But I can definitely see like little bits of like the type of behavior that you saw sort of within different kind of
00:26:24
Speaker
places where perhaps not to that degree. But yeah, I mean, I think it'd be really good to, I guess, talk about because I get a lot of questions from particularly from parents who come on to my live streams or send me messages asking, like, when did you speak?
When Do Autistic Children Start Speaking?
00:26:41
Speaker
When did you start becoming verbal? You know, I really need to know because my child is like not not speaking. They're like four or five years old or something like that.
00:26:51
Speaker
Um, and I remember you saying that you were kind of functionally nonverbal until the age of seven. I mean, what was that kind of experience like for you? And knowing that, I guess they didn't know when you didn't know that you were autistic, you know, how did your family kind of navigate around that?
00:27:14
Speaker
Yes, I think it goes back to similar, although contextually very different ways in which my parents were very open-minded. I mean, I was born in 1986.
00:27:30
Speaker
Part of my autism profile is brain injury. I mean, and I'm not saying that for all. I just want to say that very quickly because I've had a few people misunderstand what I'm saying. It's something that happened to me. Separate to the autism. Well, it kind of tempered my autism, but I'll go into that in a moment because it's a part of the brain that was impacted.
00:27:55
Speaker
So my mother had what was called a placental abruption, and it causes a condition called cerebral hypoxia. So cerebral hypoxia... It says like lack of oxygen to your brain. That's it. And the placental abruption is you've got the membrane that protects the baby, and if it breaks,
00:28:16
Speaker
it causes hypoxia and it takes about two minutes and cells in the brain start to die. So I had a traumatic birth, I was a C-section baby, I was premature.
00:28:28
Speaker
So part of these autistic presentations were there. The brain injury was to the left hemisphere and probably the sitable lobes. So the left hemisphere is resentive and expressive language. If you look at the function of the sitable lobes at the back of your brain, it's almost like the vision
00:28:48
Speaker
absolutely it's almost like your brain's eyes okay so you've got sensory organs but then you've got the perception and semantics it's weird that it's at the back of the brain where like the eyes are
00:29:03
Speaker
I spoke to, it's interesting, I did speak to a speech and language therapist and she says there are people who are born with what would be called parallel brain. So it's a brain that's actually the wrong way round. So the sitable lobe is at the front and the frontal lobe is at the back, which I found very interesting, would actually make more sense because actually then they're parallel. But nevertheless, I have that. So the left hemisphere affects the opposite side.
00:29:33
Speaker
I'm hemiplegic as well, which is a sort of milder form of cerebral palsy. It affects my leg primarily, but also when I was younger, it affected visual perception, body awareness. So it's almost like living in half a body, so language, visual perception, body perception. My parents in particular, my mother realized there was something different around six months
00:30:03
Speaker
Initially she thought I was deaf and blind and it was nothing, again, it was nothing to do with my sensory organs, it was to do with how my brain was taking in these modulations or not. I know, even with autism there's quite a lot of, I think that's one of the common misdiagnosises when we're younger.
00:30:24
Speaker
Like the fact that, you know, we're deaf because, you know, one of the kind of typical behaviors of autistic children is that we don't always respond to our name or like, you know, we might, we might go the opposite. And like, if, if people address, like, if you're at school and people address like generally the
00:30:46
Speaker
like the teacher comes across and is like, okay, kids, or okay, group or something like that, then we just don't pick up that we're included in that. Absolutely. Yeah, it's a sort of, sort of egocentric reaction. It needs to be more directed at you or at least aware that the conversation is also about you. You're quite right there.
00:31:12
Speaker
So it was around six months and then she said as I got older it became more apparent and I was her first child, I was a secret baby actually, she kept me secret. She still doesn't understand why but I was kind of this big reveal to my grandparents when they got so tall in the evening saying you've got a grandson.
00:31:34
Speaker
And don't get me wrong. They were brilliant grandparents. They were very loving. But moving forward, as I got older, it became more obvious. And there's a few reasons why my language was like it was. And it goes into the visual perceptual aspect. So breaking down these visual perceptual aspects. There's two things going on. Firstly, there's a condition called somalagnosy.
00:32:04
Speaker
read about it. There's a there's a there's a syndrome called Bayland syndrome, which I relate to apart from the optic ataxia, which is the movement of the eyes. I don't have that. But some malagnosia I do have and Donna had it as well. This is why I connected with a more than just an advocate there was shared experience. And what it means is is it's tunnel vision. So it's
00:32:30
Speaker
If I look at one thing in my visual field, everything else is neglected. So you can see how that affected social perception. You know, if I looked at a person, they'd been pieces, all fragmented, distorted. I could maybe see a nose or a pair of eyes or hair, but
00:32:49
Speaker
If I would switch from the eyes to the nose, I'd lose the eyes and focus on the hair. If I switched to the face, I could sort of focus on the face and the body, or I could look at the room, but lose the person or look at the person and lose the room. So some malt, simultaneous visual sensory information I couldn't get. The other thing I have was semantic agnose or visual associative. So this is one of the reasons why my mum thought I was physically blind.
00:33:19
Speaker
is because the way I was interacting with the environment was like a deafblind child. So I was licking, sniffing, tapping, rubbing my voice. My hands were my eyes and ears. So what I was doing was getting other sensory modulations to create a framework which I couldn't internalize visually.
00:33:42
Speaker
So I don't have a visual memory. I'm the opposite temple. I know you spoke to her. That must have been very interesting. I'm the opposite. So I don't have that strong visual pictorial framework. And it's quite a common way of thinking. It equates for about between 60 and 80% of the human populous visual thinkers. And that's trailing behind with word thinkers, which is about 20%
00:34:11
Speaker
So I'm more tactile kinesthetic. So my world was tempered by touch. I was a nice memories of me. I was a happy boy. I mean, I don't want to paint out. I certainly wasn't. It's not true at all. I was happy.
00:34:29
Speaker
partly because of their open-mindedness. I mean, she has a very fond memory of me, you know, because I didn't wear shoes, because I needed the texture. The feel of the ground. Yeah, being grounded, literally. And she can remember those moments out in the garden. It's definitely like a sense that we've lost
00:34:56
Speaker
Nowadays, and obviously it's a lot to do with safety. You know, you obviously don't want to tread on rocks or grass. No, not grass. Grass will be fine. Let's say it's an insect on it. An insect, yeah. But we're actually like, it's actually quite important for us for in terms of like sensing, like we very much like blunt our input from like
00:35:22
Speaker
the ground and the earth and like a lot of people who are into like the whole kind of spirituality like meditation thing.
Importance of Grounding and Sensory Experiences
00:35:29
Speaker
They often like to take their shoes and socks off and like
00:35:33
Speaker
you know, just go barefoot whenever they can. And, you know, for me, someone who has kind of difficulties with proprioception and vestibular, you know, balance and awareness of your body in space. I used to wear these things called Skeletos, which are like an off-brand version of Vibram Five Fingers, which are basically just barefoot shoes. So like, minimal padding.
00:35:58
Speaker
just like pretty much like similar to Crocs, I guess, in a way. But I used to used to do everything in them. And they were really kind of it's it's such a different feeling, feeling like the pressure of the ground on your feet. Whereas, you know, nowadays, we have a lot of shoes that are very heavily padded. Yeah, they've got big heel lifts. They're like
00:36:25
Speaker
You know, there's so much sponge between you and the ground, even more so if you like chunky shoes that it kind of makes you feel a little bit detached from your environment, I think. Yes, it does. You're right. And being with the Earth, I suppose, and the way in which I interacted with
00:36:49
Speaker
environment, the physical environment, people, places, etc. means that the way in which I interacted was, I suppose, more sensory based because it was a trade off if I can't see with meaning, or I wasn't getting clarification through my eyes or the way my brain is interpreting
00:37:12
Speaker
this visual information, then I'd find other ways to navigate and create compensatory ways of what is a tree? What is a shoe? What is a face? Is that mum? Is that father? Who is that? So I do all these things.
00:37:31
Speaker
And of course, it did have an impact on language, because if I haven't got the pictorial referencing, that's going to affect language association. So... Yeah. Yeah. Yeah. Because I imagine like, because...
00:37:45
Speaker
You know, a lot of the ways that kind of humans learn and also, you know, particularly like youngsters, little kids, babies learn is by like association. Like their parents say some combination of sounds together. And then they like hold up like an object and they say like, oh, this is a rattle, rattle, rattle, you know, and they're holding it up and you have that kind of, you see what it is and, you know,
00:38:12
Speaker
Hopefully, you mimic it and you say whenever you see a rattle, you go, oh, rattle.
00:38:19
Speaker
I didn't have that. I would wonder what it is, unless it was being used or unless there was a way of object of reference, moving it about and making it come alive. But when things are dead, when they're not moving, I would easily wonder what they were or confuse them with other things.
00:38:45
Speaker
So the other aspect is language. So I was about 80% meaning deaf when I was young. So when I was in preschool, all I saw was fragmented pieces of information. All I heard was phonics. So these fragmented things, I'm trying to give you an idea of how it felt. So these fragmented things were making sound phonics to one another.
00:39:13
Speaker
So I didn't create the association with the image and the sound to create word. What I was hearing was just pattern speak. What I was seeing was visual patterns. I was very hyperactive. And I like... And so when you're swimming, I like to ask about the swimming.
00:39:35
Speaker
Yeah. Like Animal Crossing. Yes, absolutely. You know, like the little animalese speak, but they kind of think... Yeah, or like for older viewers, and I used to watch reruns of this, Peanuts, Charlie Brown, when they used to be in the school, this trumpet sound, it would be the adult speaking.
00:39:59
Speaker
And yeah, the sort of, you've never heard the adult, which I always liked that they'd done that because it was purely about the kids and all their, Charlie Brown was quite an endearing character. He's a bit of a solker, a bit of a
00:40:14
Speaker
But he would always get there in the end. He would always have his friends to back him up. I like the kind of... Sounds like me as a kid. Well, yeah, I think it kind of sounds like me too. Maybe that's why we relate to it. But nevertheless, that is how I heard and saw. This Garn had quite serious attention from the head mistress who was at the preschool, quite worrying attention. She thought the reason why I was acting and behaving the way I was
00:40:44
Speaker
was some sort of abuse it was sort of subjectively kind of hinted at because she wanted an appointment with my mum outside of the preschool and my mum let her in and the first thing she said was oh um you've got a nice sitting room and I said what what what do you think was meant by that you know what what and my mum's observation of
00:41:11
Speaker
that comment was, it was a judgment. You didn't expect it to be. Yeah, she was building up a framework of what this house would look like in connection with how I was behaving or she thought I was behaving at preschool. But going back to the language thing, it kind of makes sense, you know, the the condition you would call it is you hear it a lot in brain injury again,
00:41:40
Speaker
you hear a lot of these words in brain injury, aphasia, and all aphasia is, it affects the left hemisphere, and you've got different types. So I had a receptive and expressive one, and probably the one that was most prominent was anomia, anomia, or anomia, depending, anomic aphasia is word finding. So as I got older, and my speech progressed,
00:42:09
Speaker
A lot of it was dysfunctional in the sense that if I couldn't hear the frequencies and sound patterns of what others were doing, that would actually echo back and actually
00:42:26
Speaker
have an impact on how I spoke. So it's a feedback loop, isn't it? What I'm hearing is going to represent to what I'm saying. I was echolalic for a longer period of time. So my language was more pattern, theme and feel rather than interpretive. The perfect example you gave was of the rattle and also that's associative. So the rattle
00:42:50
Speaker
is a baby's rattle. You're making a visual association that it's rattle, and then you get its function, its interpretive function. We see things via function, that functionality. That's how our brain interprets things as objects, isn't it? Yes. Why do we see a chair as a chair and not wheels with plastic coming off?
00:43:14
Speaker
and like a cushion and stuff like that it's because of its function right we sit on a chair that's it so it's so it's a chair that is just a whole thing yeah so now you can understand why i was context
Unique Communication Style and Social Interactions
00:43:27
Speaker
blind and meaning blind because all i saw i would either see a wheel or a cushion yes or a bit of wood that wouldn't be able to bring the gestalt together to make chair
00:43:38
Speaker
And that was the same with people. So the language thing meant that I didn't get the feedback receptively or expressively. So the pattern theme and feel language was language that was a noted base, but it was to do with my reality of the world.
00:43:56
Speaker
So it was perceived as nonsense speak by others, word salad. But it wasn't, it had a function, it had an internal function for me. You know, lots of squealing, the high pitched squealing would be happiness and the sort of downturned monotone grunts would be unhappiness.
00:44:21
Speaker
Um, lots of clicking for anxiety. So I would click, you know, like that. Test thumping would be about dissociation and body disconnection. So thumping my chest. Trying to, trying to get back in, you know, getting the feedback, the, uh, the somatosensory feedback in order to feel kind of a bit more. Yeah, you've got it. And sculpting things would be a partly communicatory thing as well.
00:44:51
Speaker
Until in my head, I used to do that. If I like people, if I sense their energy and I like them and I wanted to be around them, I may not have appeared like I wanted to be around them. I may have appeared quite aloof at times. I did want to connect.
00:45:11
Speaker
but I didn't have the facial expressions or the clarity, the visual clarity to connect in a way which maybe they expected. Now, my parents were very good with this because how I recognize them was one piece of information. So my father, I used to sculpt his face, so I knew that face was father.
00:45:36
Speaker
And with my mother, who have adopted a curly hair, I would feel her hair and I would know that was mother. So by extension, I was face blind as well. So I wasn't just object blind or meaning blind, I was face blind. So you can kind of see how these things interplayed with one another. The visual perception not only affected
00:45:58
Speaker
my learning, my social perception, but context and association. And language, because I didn't have that bridge with pictures, meant that my language, it kind of makes sense because that filter was a little bit like a bottleneck. There was a sort of bottleneck there. It made sense why my language was my own. It was very egocentric, I suppose, language. And even typically developing children
00:46:26
Speaker
will have egocentric language for a very long time. I'm quite surprised at how they teach kids to like share toys. Yes, you do. I remember going around a friend's house who had a little boy that still have it. It's not past tense, he's still with us. He's about seven now and he was three and this is
00:46:51
Speaker
egocentric development fascinates me, particularly toddlers, because I like the way they think, probably because I sometimes think similarly. Yes, and it was really interesting why he got upset. I could oddly relate to it. Sam, the father said to Jasper, to be a good boy, to be a good boy, can you move those balloons? Now, his reaction was actually really interesting.
00:47:21
Speaker
he started to well up and cry, which I really felt for him as his lip was quivering. And he pointed at himself and he said in earnest, but I am a good boy. And Sam didn't get it. So Sam said again, but to be a good boy, can you move those balloons? And he went again, he said, but I am a good boy. And I sort of thought, yeah,
00:47:50
Speaker
He's not making the link with the balloons and how that will somehow magically make him a good boy because actually he's oddly right. I am a good boy. How do you become a good boy if you're not already a good boy? Exactly. Why would the balloons have any impact on me being a good boy? So actually in an odd way, semantically,
00:48:15
Speaker
I thought, this is actually quite an interesting discourse. The adults trying to say, do this, and Jasper's reality is, but why? Because I'm already that. And I found that really, just from a psychological and social point of view, quite interesting.
00:48:37
Speaker
that that would be quite quite an interesting kind of point to just like linking with like PDA, like the graphical demand avoidance. It's like the expectations is what causes the the difficulty with demands on on you. Like if you don't do the demand, then you're you're not good and then you get a punishment or like, you know, this is those kind of associations that you get when people tell you to do things. It's
00:49:05
Speaker
Yes. I find it really interesting because I know that there's, you know, the majority of people who listen to this podcast, they tend to be autistic, I think. Oh, I'm sure. I think looking at your Instagram, I think you're pretty much on the money with that. Yes.
00:49:21
Speaker
Yeah, I'm sure that there's going to be like a lot of people who aren't like parents kind of wanting to see what autism is kind of like an adulthood. And, you know, from from talking to you and hearing about your experiences with difficulties with visual things and being nonverbal, like your ability to describe and kind of
00:49:46
Speaker
I guess,
Struggles with Alexithymia
00:49:47
Speaker
give a picture of what your world is like is very, very detailed and very, very well kind of constructed, which I suppose it kind of goes. In some people's minds, like against, you know, your early kind of childhood experiences in a way in terms of how well you speak, something that I experience a lot as well, like, you know, how do you do these things? How do you like socialize? How do you like
00:50:16
Speaker
empathize with people when, you know, you struggle with cognitive empathy, you struggle with Alexa, find me, you have communication difficulties, social difficulties, like, why is this become something that you excel in? Like, is was there any like, drive for you to want to want to do that? Was it kind of an empty knit? Because for me, it was an emptiness of connection that kind of drew me to doing these kind of things.
00:50:44
Speaker
Yeah, that's very interesting. I think the first person I made friends with was myself. I think that was it. So when I was, and I said this on the previous podcast, didn't I, about when I was functionally non-verbal, my speech was more dysfunctional. I was going out into the community and I would attempt
00:51:11
Speaker
to connect. I would attempt with what language I had to try and connect with the older children. They were somewhat older than me. And their gaps in knowledge meant that
00:51:24
Speaker
there would be withdrawal, or there would be ignored, or I would be... It doesn't take a lot. No, it doesn't. It just takes like a slight delay and like the flow of conversation for people to kind of get awkward, look around, get distracted. Yeah, you're absolutely right. And then it got quite viscous, you know, it wasn't just ignoring, it was actually trying to wind me up or pushing me, kicking me, hitting me, et cetera.
00:51:53
Speaker
But as I said in the previous podcast, I've laid bare all that and I'm actually, I've internalized it to the point where I can talk about it, don't get affected by it, don't get triggered by it. Humanized them because they may have had developmental challenges. They could well have. They may have had- The kids. Yes. Yeah. They have children, so a lot of them are married and do have children. So I had to,
00:52:21
Speaker
kind of internalise that in a more structured and more balanced way. I think the void is a very powerful description, the void of connection. I suppose
00:52:38
Speaker
I started realising I was different around 16, which I've been told is late. Maybe that's thankfully so, because obviously I'd gone through a large chunk of puberty by that point. Still had a long way to go, but a large chunk of it had passed me by.
00:52:57
Speaker
So I think from that point of view, things didn't always hurt me as much because I didn't always understand the significance of what they were saying. I was still meaning deaf. So in some ways, the meaning deafness protected me from the complications of interpretation. But equally,
00:53:21
Speaker
As I was getting older and puberty set in, emotions become more complicated, neurochemicals start charging. I did because of Alexa farmy related stuff, which you talk about very well.
00:53:37
Speaker
and that has about an 80% crossover with autism, so it's huge. There's a lot of people out there with it. I used to think emotions came from out there in a very meta reality type thing. Spiritual energies. Some people think of that as an actual way of understanding. Yes, they do. Your energy is bad, or the vibe is not good.
00:54:06
Speaker
Absolutely. So emotions, my own emotions were like something that would come into me.
00:54:13
Speaker
like a wave, like a tsunami, of all this under-processed or chunky pieces of information that weren't readily disseminated. And then I'd hit myself, and a lot of that hitting was feeling of out of control, the summit sensory amplification, which is common in alexa farming with or without autism, summit sensory amplification is pre-existing sensory issues that get heightened because you don't know where they're coming from.
00:54:41
Speaker
you don't know what angle so i used to slap my legs hit my arms and tense my temples which my mum used to get very panicked by because obviously my face would go very very very very red and she would worry she would worry that i was gonna
00:54:57
Speaker
bust a blood vessel, you know, because, you know, when someone goes very, very red and it's clear. That head rush sometimes can be quite like a nice, like a sensory experience. Like I used to sort of lie upside down on the sofa, like with my head, like completely upside down, just so that I could feel that kind of pressure, the rush kind of to my head. Yeah. Like it was very calming for me.
00:55:23
Speaker
Yeah, there was, you're right, there was absolutely a function. And at school, we're going with fast forward into teenage years. I used to confuse illness and emotion, you know, cross wiring. So I used to go into reception a lot saying I've got a headache or a stomachache and cry. And it was nothing to do with a headache.
00:55:47
Speaker
it was nothing to do with a stomach ache it was the nervous system reacting to how i was being treated and the only thing i could name in was stomach ache or headache and it was interchangeable either i have one or the other i have both and it was really unprofessional this got round to teachers.
00:56:08
Speaker
And two teachers actually really unprofessionally belittled me in front of my class saying, one of them said it was a science teacher. He said, pull the boy who's always crying in reception, go and get that flask. This was a science teacher preparing for an experiment. And he said that in front of 30 students. And another teacher done it, a PE teacher says, you're always crying in reception. I used to think, how do you know?
00:56:35
Speaker
And of course, what happened is, sadly, gossiping. And it was completely unprofessional, but I understand it's a workplace. You know, school is for the staff. You think of teachers and parents, like up to a certain age where you kind of have the realisation. You think of authority figures, teachers, parents, as like these somewhat godlike
00:57:01
Speaker
people that just don't exist in the same like realm as you like they're just these kind of alien creatures that just yeah you know they've turned 21 18 25 or whatever and they've suddenly had to switch in their brain and now they're like
00:57:19
Speaker
adults they're like normal kind of well-functioning and everybody's like that and nobody cannot be like that and yes it's really weird when you come across that that kind of realization but um i know that you were saying about like alexa finally her ends
00:57:37
Speaker
like understanding emotions because I used to go home a lot at school and I think it was probably due to anxiety that I used to get so sick and I used to get the headaches as you said but I used to
00:57:52
Speaker
basically described my emotions in terms of like a positive or negative like I couldn't really put my finger on exactly what was happening but I knew that I was feeling good I knew that I was feeling bad and there wasn't really any like description between them and also you know I experienced a lot of bullying at school a lot of kind of Rima mongering harassment
00:58:19
Speaker
whatever you want to call it. I think it did affect me, but I didn't really feel when things happened. If someone told me something that I hadn't told them, I was like, how do they know? It was this sense of lack of control, but not really understanding how this came about.
Emotional Complexities and Validation
00:58:46
Speaker
I think it's a lot to do with
00:58:49
Speaker
you know, being Alexa fireman, you know, you don't always attach your feelings to the events that happen around you, the ways that people interact with you. And so it's a bit hard to characterize when to put your guard up, when to like, be vulnerable with people when to tell what to tell people, you know, and that that that was really, really difficult.
00:59:12
Speaker
for me. And I've had a lot of situations where really bad things have happened to me, but I haven't necessarily like connected how I was feeling at the time, it was only kind of in hindsight when I look back when I was like, Oh, you know, actually, this is causing me a lot of anxiety. And this is why my stomach hurts. And like, it took us it was it took a very long time for me to
00:59:38
Speaker
come across the realization that I came up with lots of different crazy theories about why I was this way. Like, am I psychopathic? Do I lack a certain area of my brain? Am I just a different human? Are these antidepressants making me like this? There was so many things that were kind of buzzing around in my head to try and explain why
01:00:06
Speaker
life just felt like this mash of emotions, sensory, like social mess, like constantly. It was very difficult to navigate. Yeah, yeah. Electrifying there in itself is difficult to navigate. And I suppose with the emotions not being in real time meant that even if your body was
01:00:37
Speaker
Reacting your connections with that somatic experience, anxiety, whatever, wasn't in tune or happening in real time.
01:00:53
Speaker
So it's not happening in real time, despite events happening in real time, which means that there's this constant lagging and delay. And the constant lagging and delay means that you are not giving connected answers, you're not giving connected responses, you're not giving, you might feel like you're on the outside looking in, or you might feel slightly detached from
01:01:20
Speaker
situation, just constant, yeah, the personalization, the realization is is very much like I was just heavily kind of just sedated like the entire time that was at school. Yes. And that's your nervous system protecting itself from any very firm harm or or what what is perceived harm perceived for it. And yeah, you're quite right. And
01:01:50
Speaker
with the exposure anxiety, which is similar to PDA.
01:01:54
Speaker
uh, Donna coined this is when your nervous system negatively reacts to self, anybody making you aware of you, the person. So it's not demands, it's just you. It could be someone saying hello to you, or it could be as simple as that. And one of the, breaking you out of that dissociative kind of state. Yeah. And you want to go back. In fact, when I did gain functional speech between the ages of seven or eight in year four,
01:02:25
Speaker
And it was functionally of a three year old. I wanted to go back because obviously this idea now is that people are making you aware of yourself. And I was becoming more aware of this. And so I would dissociate.
01:02:44
Speaker
from that although I was also dissociating probably just as much really from language because the bandwidth of meaning I couldn't get so when I was in the classroom one of the things I would do is is dissociate and donna hypothesize that
01:03:05
Speaker
Some autistic people with higher levels of information processing challenges like language processing or visual perception may more likely dissociate because they're not getting the incoming information in time, which then means that if they're not getting the incoming information in time, their nervous system has got to do something.
01:03:24
Speaker
And I suppose mine was quite subtle. I wasn't smashing or hitting. I was just sitting there and just going. So it appeared maybe like I was in tune or actually
01:03:41
Speaker
getting on or on some sort of superficial level anyway, but no I was Dissociating quite
Experience with Musical Ear Syndrome
01:03:50
Speaker
a lot at school and predominantly very very internal facing myself like yes I know there's a lot of autistic people who have like meltdowns where they can be quite angry towards people like aggressive I was never like that I was like very
01:04:06
Speaker
internal facing, you know, if I was aggressive, it was always to myself, like, like with dating and, you know, things like that and very heavily dissociating. And it was it's a very strange place to be in, like, and then kind of coming out in adulthood and feeling. I guess feeling OK with like grounding myself, like the anxiety
01:04:33
Speaker
Um, I mean, there's a lot of reasons why the anxiety suggestions like in, in helping me with panic attacks and things like that didn't work. You know, obviously.
01:04:43
Speaker
identifying that you're anxious is quite hard when you're alexafimic in the first place to actually incorporate those but the actual grounding made me feel worse like because it took me out of this dissociated state where I was like I'm actually like being in the moment listening to things identifying things like talking to people very much in the moment and it was it was very difficult like it just made my anxiety a lot worse
01:05:12
Speaker
Yeah, I tune out a lot and I did more so when I was younger. And one of the reasons, a hypothesis again by Donna, it's a great book called The System of Sense in the Unlost Instinct, which is
01:05:29
Speaker
Her hypothesis being when a human being is born, they merge with objects and people because they are not using interpretive frameworks. They come later. So if someone is still in the system of sensing,
01:05:45
Speaker
not in the system of interpretation, where you're getting applied interpretation and cladding and hierarchy and all those other things. That would mean that a lot of the time, the tuning out that I was doing was mergence. And I could merge with a bottle, I could merge with an orange, I could merge with colors. And what would happen is the mergence would be so deep is that self and object would become one.
01:06:15
Speaker
And self and object becoming one is partly nice for me, but dangerous if someone tries to take me out of that feeling. And Donna would hit herself. She was quite opaque and transparent. You know, it was this feeling. Yeah, it's very strange. You're saying about this, like it's
01:06:40
Speaker
You know, I recently did a podcast with Emily Robin Clark, and we were talking about autism and spirituality. And like, you know, the idea of meditation is that you kind of, you know, the idea is you want to become one with the universe and not really have like a sense of ego and you want to be detached and like, yeah, it sounds it sounds exactly like the opposite of what you have to do to become like an adult.
01:07:10
Speaker
Yeah, you're saying about like, you know, how you interpret the world and stuff. It's like, people started off with meditation. You're quite right. Because what I do my conscious mind, I have to use as a way of keeping me on track.
01:07:30
Speaker
So if I'm walking into a supermarket, if I'm in a good mood, I look at things like jewellery or colours or someone's buckle on their shoe or someone's hair or someone's pattern on their coat.
01:07:50
Speaker
And I want to touch it, and I want to experience it, and I want to merger it. But I have to keep saying to myself, don't, don't do it. Don't do that. Don't do it. You're here. So what I have to remind my mind all the time is interpretive thread of why I'm here.
01:08:07
Speaker
why I'm in this supermarket and what I'm getting, why I'm travelling on a train, why I'm going on the underground because all the coloured tiles make me feel really good and I want to just look at them and I think, no, don't look at those tiles, don't look at those lines, please don't, don't, don't. And it's quite a negative dialogue. I mean, that's what my counsellor said. That sounds very negative, Paul.
01:08:32
Speaker
And I suppose it is, but it's self-preservation because if I start staring at these lovely things that I like, it's going to garner attention and attention that could be quite, it could lead to things happening. And I suppose it is a part of me self-preserving.
01:08:56
Speaker
But yeah, I detach easily. If I'm overthinking, there's usually a good reason, but I'm not naturally an overthinker. And mum's laughing because she's saying, she's laughing because she disagrees. But the only time that I express overthinking, and mum's listening now,
01:09:25
Speaker
Is me and mum share obsessive compulsive disorders? So if the overthinking usually comes from an obsessive compulsive nature rather than an analytical one, does that sort of make sense? Yeah, I mean, it's like, I definitely like I've always been a very internal person. Like I do think like constantly my default mode network is pretty like,
01:09:56
Speaker
crazy all over the place kind of. But I think that's mostly because of my anxiety disorder. Yes, my depression, it's kind of, you know, the way that I've coped with life and things is by over analyzing things to such a degree that I am aware of all possible
01:10:14
Speaker
outcomes. So is it a bit like analysis paralysis? You're you're looking you're looking for the sequence. And do you almost feel metaphorically paralyzed because there's too many variables? Does that mean? Yeah. Um, I think it's less so like that in adulthood. And it's more like, it's more of kind of an introspective thing. So I'll, you know,
01:10:44
Speaker
a lot of the things that I do or say that I'm going to do, there is always a counter kind of like, sort of like I'm having a debate in my own head about everything. Right. It's not necessarily about events or people, it could just be like, like the way that I process and do things that kind of come
01:11:04
Speaker
naturally using your idea of the monkey brain versus your higher cognitive brain. I use my higher cognitive brain for a lot of things, which often leads to me getting quite burnt out of very little. It really does impact my executive functioning quite a lot.
01:11:23
Speaker
That's interesting because I'm the opposite. I go with feeling, which people get surprised by because it's probably challenging a stereotype. Yeah, it's not very autistic. No, I go with feeling. I can apply analysis, of course I can, because I think I have to point out because
01:11:48
Speaker
I can't just say that and then you look at my blogs and you think, well, there is some analysis going on there, of course there is. But the way I am in terms of when I'm not writing,
01:12:02
Speaker
Yes, my brain switches off if I sit down. Sounds blissful. I fall asleep a lot. And I've told Livia this, I can fall asleep very quickly and very easily because I just I'm just in the moment. So
01:12:23
Speaker
Maybe, maybe you are like this kind of, you're naturally this kind of guru, spiritual leader who just exists in this meditative in the moment space. When I'm not thinking in the moment, there's a problem. So that's good. So it could be OCD. It could be PTSD. It could be
01:12:54
Speaker
Sometimes I get what's called musical ear syndrome, which is an offshoot of having language processing disorder, which is an earworm, but times 100. Oh, I get them. I get them like on specific.
01:13:10
Speaker
looks like five second segments of the song just over and over again in my head. I've never heard of like a descriptive word of that. It's musical ears syndrome. So it's a form of auditory hallucination. And I've had them and it's partly to do with being a phasic. So I have an ear. I have an iPod in my head, which can be quite relaxing. So you can see why I'm not always consciously cognitively driven.
01:13:37
Speaker
because it's a lot of pattern rather than cognition. So the only time it can be distressing is if a certain clip or a certain sound bite as you phrased it, it becomes quite oppressive. So I made the mistake of listening to a horror theme, and I like horror films, called The Burning.
01:14:04
Speaker
And it's a very drony, very melancholic theme. And it got stuck. And I was actually getting rather worried because it was just this. Playing, playing, playing. And it's quite a depressing score because it's a horror film. It's a slash film. And my parents knew I was getting anxious. My mum's just coming through.
01:14:29
Speaker
She said I can tell there's something wrong because I was frowning. I said it's this music in my head I'm a bit concerned about because there's no, it's not coming away. It's not being replaced by something else and I think I had it for about 48 hours and
01:14:53
Speaker
Yeah, eventually when it kind of dissipates, like it's getting echoey and then something else replaces it. But yes, that's called musical ear syndrome. It's commonly- I need to definitely have a look into that. Yeah, it's a real thing. It happens for people with partial deafness. So they're partially deaf, but they're hearing, still hearing, it's a paradox.
01:15:23
Speaker
But you can also have it if you have processing issues. There's a visual perceptual version of that with people who are blind, but they get visual hallucinations. I forget what it's called. But there's a visual version of that. But yeah, it's like a living iPod in my head. Yeah. But it's only these five second clips. And it's often not like. Sometimes it's a nice clip, but like it's not.
01:15:51
Speaker
it's it's it tends to be like like a really emotive part of it that I don't actually like that much that just kind of gets stuck in my head and the idea that I can really quell it is by listening to music constantly. Yes, that's what I had to do with this one. I had to drown listen to the actual song over and over again and just kind of get your brain. Yep.
01:16:16
Speaker
Ay up, just popping on to say thank you for listening to this podcast thus far. If you could do me a real solid, please make sure to rate the podcast if you're in a podcasting streaming service and do all that like, subscribe, comment stuff on YouTube. Damn, even send a heart in the comments if you don't feel like typing.
01:16:35
Speaker
Make sure to check out my link tree, which is always down below in the description or head over to my Instagram page at Thomas Henley UK for daily blogs, podcast updates and weekly lives. This podcast is sponsored by my favorite noise cancelling noise reducing earbuds that you can adjust the volume on. Really, really great thing. They're called D buds and you can find the affiliate link down in the description of this podcast for a 15 percent off discount.
01:17:05
Speaker
Anyway, I hope you enjoy the rest of the podcast. That's all from me. I know that we've talked a lot about like the difficulties of kind of having visual disorder and lots of different kind of processing differences and perhaps a little bit about sort of autism in the context of like the workplace, things like that at school.
Overcoming Mental Health Challenges
01:17:27
Speaker
I'm just wondering like, what would
01:17:30
Speaker
or what has been and what would be kind of helpful to someone like you? Like how did you kind of turn things around and start to, I guess, understand the world, interpret the world, better get to a point where you can public speak and you can have conversations with people? What changed in order for that to happen? Yeah, I would say what changed was
01:18:00
Speaker
I got to a point 24. Prior to that, I had gone through mental health services pre-darnosis. I had a nervous breakdown around the age of 21. So I went through adult mental health services for quite a period of time. I think it was six months plus, if I remember. So I got diagnosed with
01:18:31
Speaker
Two personality disorders, borderline schizotypal. I had psychosis for about half a year and that was auditory hallucinations. Are those things that have been removed since getting an autism diagnosis or are they the standards?
01:18:50
Speaker
Oh, I was poorly and I did have personality disorders, but you can have both. That makes it very complicated because, as you can imagine... There's a lot of misdiagnosis with those kind of borderline... BPD is the same. Bipolar, schizophrenia, they're quite common misdiagnosis. They can be, and it's important to say that.
01:19:16
Speaker
And it's equally important to say you can have both, which actually makes things rather complicated. But what it also does is also suggests that autism isn't linear. So borderline personality disorder, you know, not having a strong sense of self is common, which I didn't have. Cutting, I was cutting, and suicidality and suicidal ideation were
01:19:43
Speaker
were apparent and attempted suicide also. So it was quite dark. I'm sorry to hear that. Oh, that's quite all right. I mean, it was a very difficult period. The turnaround was obviously many years after that in 2010.
01:20:03
Speaker
when I got diagnosed on the spectrum and actually it's a dual diagnosis of that and obsessive compulsive disorder is the way in which I was supposed to try to make myself better for want of a simplified term or to elevate myself was to actually
01:20:27
Speaker
something I said earlier about being friends with yourself because I feel that that idea of constant need for existential checking, existential adornment, existential validation is so negative.
01:20:51
Speaker
And I'm not like that anyway. I'm naturally solitary. I'm very much a people watcher. My personality type is very much there in that sense, asexual. To some degree, a social. I'm quite indifferent to praise and blame. I think that goes probably with the territory of why people think I'm relaxed.
01:21:15
Speaker
Um, so, and I'm quite happy being a people watcher. I don't, I, I, I'm okay. So if I was at party, you know, I could quite happily just watch and observe. Watch. Yeah. Listen to the conversation. Yeah, absolutely. To me, that's, that would still be a good time. Um,
01:21:35
Speaker
But the internal validation, the internal sense of self-worth, the internal sense of being happy with where I am was probably why I'm in a better frame of mind now, because it's not looking for something out there.
01:21:59
Speaker
which is a common mistake, a lot of people do. And it's completely... It's something that I'm trying to work through at the moment. It's very much the case that, you know, I think it's a lot to do with our negative experiences as well as other people with people. You know, we have such a negative bias in how we...
01:22:17
Speaker
experience people and the world almost to a point where it becomes like too much and you kind of seclude into yourself and when you want to kind of go out there and make friends and improve yourself and connect with people there is always that inherent like need to know if like
01:22:39
Speaker
Things are going well if you're friends with people like I need like direct affirmation like you're my good friend or like you're my friend or I like you or else I just don't like assume that. It's very difficult because it is.
01:22:56
Speaker
You know, as you said, I'm similar. I'm quite a solitary person. I like to do my own thing, like to be by myself, but also at the same time, it's like I'm constantly like looking for that kind of external validation in terms of, you know, I'm doing well and, you know, I'm working hard or like, you know, I still do it. I still like go and do things, but it's always that kind of need in the back of my head to know that
01:23:25
Speaker
I'm being valued or like, you know, I know I think that's also somewhat to do with being depressed, you know, very much like your internal validation of yourself, your internal kind of
01:23:40
Speaker
self esteem, the way that you think of yourself tends to be quite clouded with negative thoughts. And even to the point where, I think there's, you know, the other aspects of, you know, being, being autistic, sometimes with Alexa Feimier, and sometimes with those social differences, we can often kind of go for a rabbit hole of like, Oh, am I, am I being narcissistic? Am I am I being, you know, particularly, like,
01:24:10
Speaker
To emotional to seeking of validation i don't want to be a psychopath because you know that's the bad thing about i also feel very disconnected from my emotions and there's all those kind of things that interplay to make like.
01:24:26
Speaker
connection, validation, and things like that, very, very difficult. And humans, you know, one of the ways that we do validate ourselves and feel good about ourselves is through social connection, because when you share things about your life with another person, how you feel, what you're thinking about, you are in some sense, you are looking for some kind of
01:24:55
Speaker
unless you're doing something like this where you're just kind of explaining your experiences and stuff, you are sometimes a lot of the time looking for that validation. That's why sometimes isolation can make like depressive thoughts a lot more difficult.
Appreciating Solitude and Self-Acceptance
01:25:10
Speaker
Oh, yeah, amplification of negative
01:25:16
Speaker
internal thoughts or self-perception is a slippery slope and I suppose with mood disorders or mood impacting mental health conditions, maybe that's a better terminology, it certainly has an impact on
01:25:42
Speaker
your ability to seek an internal want to be valued. So that could be through looking for friends or acquaintances or potential partners. Or it could be the fact that when you're on your own and certain personality types do not equipped very well being on their own.
01:26:04
Speaker
My late nan hated being on her own, absolutely hated it. It really irked her being within her own thoughts. Whereas being on my own for me is actually quite nice and people get quite surprised. Oh, you like being on your own? Yeah, I do. I do like my own company because
01:26:28
Speaker
The first friend, this is my view, it's just of you, and I've been up for debate and disagreement, absolutely, is that the first friend you should make on this earth is yourself.
01:26:40
Speaker
You're going to be in this, I joke, I say you're going to be in this flesh cage for X amount of time. I'll be released finally from my eternal cage when I depart myself. Yes, so you may as well make friends with it. You may as well get used to it.
01:26:59
Speaker
You may as well, because I think that's the one body part, if we're looking at the human body, your own, that we forget to look after emotionally.
01:27:14
Speaker
So that is why it's not a narcissistic thing. It may be a slightly egocentric thing, but egocentric behavior is not narcissism. It obviously gets misunderstood. And I've got a lot of friends on the spectrum who continue to be egocentric.
01:27:30
Speaker
and it's about education of why that is rather than slamming them with judgment or saying that they're inherently selfish because it's actually not the case if you actually break down why they're doing it.
01:27:46
Speaker
And I think that most people are like, yes, that some of the people who like are the most kind of outward facing people pleasing kind of individuals, they almost always tend to be neurodivergent. Like, but the thing is, I think it's just that we don't hide it.
01:28:05
Speaker
We don't fake that we're not selfishly driven in some ways. Quite often, I don't know, my parents will say, oh, you need to show an interest in what someone's talking about. But I'm not interested in what they're talking about.
01:28:29
Speaker
you know, that those those kind of things that you kind of put on for social politeness and social nicety, they those are just masking your inherent kind of selfishness. But because we don't like doing that kind of thing, then sometimes our selfishness is a bit more apparent, I think.
01:28:49
Speaker
Yes, I suppose you're right. If you're being quite overt about what you do and don't like, it can sort of create a social difficulty, I suppose, with OK, so you don't like that. Or you could get into a cycle of reactive discussions where people are getting reactive with one another. It might snowball into a potential.
01:29:17
Speaker
Yeah, it's a difficult one because some people try to understand self.
01:29:27
Speaker
through other and other through self. And the other through self is they may have a dialogue about themselves to try and relate to you. And along the way, it may actually get misunderstood as being like, look at me instead of you like this. Yeah, it's like the whole thing like,
01:29:46
Speaker
And someone says that they're depressed and having a hard time and the other person says like, Oh, yeah, I had a period of depression. And it felt like this, this and this. And this is what happened. And like, it's not an attempt to shift the conversation towards you. It's like an attempt at like relating to the to the person. Yes. Yeah.
01:30:06
Speaker
I was I was having a conversation with one of my autistic friends. I went to go see like the Barbie movie on the weekend and we're actually talking about it and it's it like for me watching kind of neurotypicals or talking to most neurotypicals about things. It's very much like their personality exists in like association with the people that are around them like
01:30:35
Speaker
It's a very emotional kind of based reaction thing. Whereas with autistic people, it's kind of like we're the same person in every single scenario. And sometimes that scenario is good for us, and sometimes it isn't. And we don't necessarily react to the flow or the feeling of the conversation.
01:31:00
Speaker
or anything like that, we just approach things from like a very hyper individual perspective, like and it's a very, very interesting to kind of think about that, because it is, you know, even when I was younger, it was like,
01:31:17
Speaker
watching neurotypicals converse and talk to each other, it's almost like they're kind of just driven by this kind of social, emotional force, this weird kind of ritualistic behavior that doesn't
01:31:32
Speaker
or reactive behavior that doesn't necessarily like come from any prior for or any meaning or like, you know, it's, it's very much very strange for me, like looking at one of the reasons why I felt very alien when I was younger. Because for me, it was like, you know, I'd think about things before I do them rather than kind of just react and say things and do things based on what it feels like I should do, I guess.
01:32:00
Speaker
Yeah, I think I can understand what you mean. I think when I was younger, it was very much about the funneling of the different components, which I described earlier, and attempting to communicate with the frequency which I had, but not always getting the response simply because it was a pattern
01:32:26
Speaker
Type language which meant that it wasn't the bridge to cross to accommodate me was not there but like I said
01:32:41
Speaker
It kind of dovetails into what you're saying about the person I am now. The way, and I briefly mentioned it anyway, the way in which I internalize the past is probably a large chunk of why I'm like I am now because it's about letting go or reconfiguring it in your mind and putting it in a more objective space.
01:33:04
Speaker
so that I'm able to function and not be bitter and not be jealous and not be consumed by certain emotions. All emotions are relative, even the ones I've just said, jealousy, bitterness, they're all feelings that human beings can get for a variety of different reasons, but I just choose not to go down that path because
01:33:29
Speaker
it will make, it will eat you up and it will make you extremely lonely. Because if you're constantly, like, embittered and jealous, that means you're, the comparisons you keep making with other people and saying, oh, they're doing this or they're doing that rather than embracing people that you are connected with meaningfully, their achievements, you know, big, big or small,
01:34:00
Speaker
I think it's also like, for me, going through that process myself, it was also about separating out actions from intention as well. Just thinking about my experience in times where I perhaps haven't behaved the best way or communicated the best way.
01:34:20
Speaker
I was like, okay, well, I was intending this, but it came across as this. And just being aware of that fact was very helpful with processing things. And I feel like a lot of autistic people, we go through the school system.
01:34:36
Speaker
We go through the workplace, we go through society with this very heavy negative bias of people. You know, you see a lot of people within the autistic community who have a very, very negative regard for neurotypical individuals, which is founded like it makes sense, but we do develop a lot of
01:34:56
Speaker
self defensive mechanisms, we learn from other people how to communicate with them to keep ourselves safe. We have very negative views of people which help us not get too excited or expect too much out of interactions. You know, they're all very protective things, but they, they also hold us back from really connecting with people which, you know, going through understanding my past was
01:35:20
Speaker
almost like mandatory for me, like being able to connect with other people in adulthood. Yeah, I think one of the things that with non-autistic realities, what helped me understand, rather than being generalist about this, is that, you know, there is more than one way
01:35:46
Speaker
to be non-autistic, just like there is more than one way to be autistic.
Inclusive Advocacy and Humanizing Individuals
01:35:51
Speaker
And that actually opens up a whole potential idea that actually everyone is an individual. Everyone is going through their own stuff. Everyone is in
01:36:05
Speaker
in different environments. It's a bit of a mess. Everyone's going through, because of their environments, different things. I could talk to someone who's non-autistic and they could relate to a part of my autism, which is fine. That's perfectly reasonable and it certainly can happen. I remember speaking to
01:36:33
Speaker
an ex staff member who wasn't on the spectrum, but she was face blind like me. And we just had this nice chat about how her face blindness had an impact on her. Like the indirect communication. Yes. And it was quite interesting. And I just felt, okay, that just shows
01:36:59
Speaker
to me and Donna was very much of the same elk that if we are going to talk about non-autisticists, let's not create further burn bridges. Yeah, we don't want to like, because they are the key to us getting what we need. Like they are the majority. Like we need them
01:37:20
Speaker
I suppose, yeah, you could look it like that indeed. It seems that I suppose I'm looking it from.
01:37:30
Speaker
an egalitarian point of view where you have lots of separation and some separation of things is very man-made. So these separations of peoples, these separations of race, there's only really one race, as Jane Elliott says, she's anti-racism.
01:37:53
Speaker
um teacher and educator and it's human race we've had it drummed into us that there's four races and that there isn't there's just one race and i think what what we have to be very careful with with labels it non-autistic description if you want to describe someone as non-autistic don't make it um
01:38:15
Speaker
Don't make it, I'm trying to find the word. If you start giving it negative connotations like them and us all the time, you run the risk of someone, non-autistic people being very worried about what they can and can't say.
01:38:34
Speaker
And because I've been in the advocacy movement for 13 years, I've seen very militant autistic people in a very privileged position such as advocacy, which is fine. I can understand, like you, why they probably got to the point where they have mental health-wise. But if you start being rude, and I mean, generally,
01:39:01
Speaker
genuinely rude to people. You then create this inability to kind of debate, disagree, offer a different perspective, learn from someone's experience. And that's words can get in the way as much as they can matter. So you can have words that
01:39:27
Speaker
people don't like, like high and low functioning, et cetera, severe and mild and things like this. But equally I can have a conversation with someone who uses those words and not get reactive because it's their choice to use those words. I know people don't like them and they may have a very good reason for using them, which I will try and understand.
01:39:52
Speaker
What I'm all for is even within the community, and this is probably why it goes back to what you're saying about how I've aided my own self-esteem, is to become a bit more autonomous, to become a bit more self-directing, to become
01:40:16
Speaker
Not to the point of denying other people's reality. So in other words, what I'm saying is even through the lens of maybe disagreement and not liking certain words,
01:40:30
Speaker
we can still have a dialogue. Potentially, I'm willing to. The only rule I have is don't be rude. And I mean genuinely rude. And that is it. If we can just, that's the only rule. You can be firm with me. You can certainly be blunt if you feel you need to, or if that is your style of communication. I don't mind that.
01:40:57
Speaker
Yeah, let's learn from other people. Even people we don't agree with, we can learn from. Even people where we don't fully understand their reality, we can still learn from. And I suppose that's partly because I've worked with people who you don't see. And I'm going to be quite frank, the people who are functionally non-verbal, the people who've smeared, the people who... Yeah, they don't have the voice. Exactly. And I've worked with these people and I can tell you now, they're the
01:41:27
Speaker
The nicest people I've met that some of these people are very distressed and I don't mean this in a facetious way or a condescending way. They humble me because what you learn from these people very quickly is you have to take you out of the equation
01:41:49
Speaker
and the focus has to be on them and their reality. And that is very humbling in those experiences. And I'm thinking of at least three gentlemen I've worked with, all varying degrees of functional language, but beautifully connecting people, very cheeky. I humanize these people. This is why I agree with you about humanizing. It's so refreshing.
01:42:20
Speaker
Even with people who present, as I've described, one of the things that made me connect with all three of these gentlemen is because I saw them as people, because I saw them as equal to me, because I allowed them to be, it's what a friend of mine, Samita Munjundar, who's on the spectrum, she's an artist, a poet and a writer.
01:42:45
Speaker
And she's talked about this thing, permission to be, like the permission to be.
Friendship with Jonathan
01:42:52
Speaker
And I'll give you a lovely example, I may as well. I used to work with a chap with Fragile X called Jonathan. Yeah, that's quite a crossover with autism. Yes, I remember her mum, his mum, I do apologise.
01:43:11
Speaker
about your mother. I remember having a conversation with her and she challenged the Dardan physician. Good on her because he felt that he couldn't have both. And she says, well, I want to challenge that. I do believe that he has both. But that was a very interesting dollar. But nevertheless with John,
01:43:37
Speaker
What I've done with him is presumed competence. I read a lot of stuff about Fragile X and it's quite negative. I'm going to be quite frank, low IQ, mental retardation, things like this, very, very cold.
01:43:56
Speaker
analytical descriptions where the person is is not really seen. I've had enough of reading this, I just want to meet John where he is and he loves, you know we're talking about Snoopy and Peanuts, he loved Snoopy and he loved Peanuts and he loved Charlie Brown
01:44:16
Speaker
he actually related to Charlie Brown very much and he's printing, he likes printing out pictures of different emotions. Very clever, he would use pictures to convey how he is and I said to him, you know what John, I said you're really intelligent and he took his fingers out from behind his ears. The reason why they used to be behind rather than on
01:44:48
Speaker
Some people with fragile X have a narrowing of the tubes because of cranial differences. He had a lot of ear infections and he's partially deaf. I'm just giving you a bit of information about why the fingers behind. The reason why the fingers behind the ear is you've got a honeycomb piece of soft bone.
01:45:12
Speaker
behind your ears and it's massaging it because it's very tight and he would also do this as well and press here which is all think it's communication he's telling you he's poorly and he took his fingers from behind his ears and he turned to me and he said yes I know and had this wonderful smile and from there on in because
01:45:39
Speaker
that had been communicated. A lot of his speech was very much pattern theme and feel, but he said that to me, yes, I know, like this in a very sing-song way. And I thought, right, OK, we're going to build up a friendship, and that's what we've done. What was built from there on in over the months and years of working with him?
01:46:03
Speaker
was a very nice relationship where he liked wordplay. He liked me using words from his favourite cartoons that would usually get a giggle out of him and we would talk.
01:46:18
Speaker
you know, in it may not be the interpretive way that other people talk, but I'm meeting him where he is.
Managing Meltdowns with Empathy
01:46:26
Speaker
And he's very tapped off, like a gentle giant, you know, would, and this is all about acceptance, right? If he wasn't going to get this, this day centre, you know, it'd be quite odd, I would feel and it was respecting him as a person. And
01:46:44
Speaker
His meltdowns could be quite extreme, you know, hair pulling, he would pinch you. But the one thing I never done, which he didn't deserve, by the way, and I think he probably got it when he was younger, was judgment. You know, as soon as he pulled someone's hair or pinched them off, we're not going to go near him again. But what I always done is I thought, right, why did he pinch?
01:47:12
Speaker
The reason why I pinched me, and it is quite hard as well, but because I'm disconnected from my body a bit, it was actually Claire who had to intervene. It was really interesting. He was going like this around my stomach and she's going, I'll pull. I thought, oh, okay. Then it was all to do with the computer wasn't on.
01:47:37
Speaker
but he didn't have the language to say i'm really upset i can't get this computer on so you have to again look it from. The other person person's reality what is their reality and i always found with him after i made that connection with him.
01:47:57
Speaker
You're never quite the same with the people who present as such again, because when you've made that connection, that meaningful connection, not just some superficial thing, you've garnered trust, which I think is the baseline for any human being. You've got to have trust, haven't you? You're not going to go anywhere.
01:48:19
Speaker
And yeah, just not being fearful of him when he has these these meltdowns. And a lot of the time after he melted down, he cried anyway, and he actually needed a lot. He's a very emotionally sensitive man. So he actually needed a lot of TLC after a meltdown, but lots of crying, lots of, you know,
01:48:43
Speaker
he would like you to rub his back and show empathy. I know that's a long tangent, but hopefully it gives you an idea of the people I have worked with. Hopefully it gives parents who may have sons and daughters with fragile X or people who present similar to the
01:49:04
Speaker
John, if they are going to be in the right place with the right staff, it can be a very happy and meaningful experience for them.
01:49:19
Speaker
It's a human necessity, isn't it?
Challenges with Neurotypicals
01:49:21
Speaker
It shouldn't be seen as a choice. You should be in places where you're being treated as an equal, valid person. And I think just transferring, I guess, what you said to play the perception of neurotypical individuals, you know.
01:49:37
Speaker
I've met a lot of autistic people who I don't particularly like. I've met a lot of neurotypicals that I don't particularly like. Sure, there does tend to be that miscommunication barrier, which can put a somewhat of a barrier to connecting with neurotypical individuals, but, you know, my mum's neurotypical.
01:50:00
Speaker
I've dated neurotypical individuals. I have friends who are neurotypical. You know, it's very much, you know, personality is definitely like a really big factor in that. And I've had a lot of people who have, you know, whenever I've been talking about
01:50:16
Speaker
you know, dating and trying to give some resources for neurotypicals to understand us a bit better to get on with us better. There's been some autistic people have been like, Oh, no, we just need to find another autistic person or like, you know, it's not it's not a good mix for us to be with a neurotypical person. It's like, it, there are some challenges to it. But there are also challenges to autistic autistic relationships. And it's not as black and white as, you know, people would think.
01:50:46
Speaker
So I really like that idea and I can imagine that, you know, in your case, kind of processing information from the past in that way is being very helpful for you.
Forgiveness and Internal Healing
01:50:58
Speaker
It also has been, you know,
01:51:01
Speaker
very, very helpful for me as well. Like in terms of understanding myself, feeling a bit better about myself, understanding people, forgiveness, you know, all of that thing is very, very important. Forgiveness isn't, forgiveness is powerful because it's not expecting them to say, I'm sorry. I think that's where we get, it's about you
01:51:22
Speaker
It's a personal thing. It's a personal internal thing. It's not literally them coming up to you and saying. Angry is not fun. Angry affects you. Yes. Yeah. I've met people who are in that sphere still where if I bring up school, it's too triggering or they're not. They're in the weeds of the metaphorical weeds of
01:51:52
Speaker
trying to get the weeds out. So they're within the weeds of the garden and they may not have the tools to get rid of them yet, or they just simply aren't there yet emotionally to actually deal with it. And that's not me being judgmental. I was there, you know, if I go back 10, 13 years. Totally. Yeah. Very great victim mindset for a lot of my time on this earth.
Moving Past a Victim Mindset
01:52:20
Speaker
Yeah, victimhood's an interesting one, isn't it? I don't know if it's similar for you, but the way I've disseminated that is I was victimized, but I wasn't, I choose not to be a victim. So I was victimized, but I don't filter that into my identity. And that was a real, I don't think I ever felt like one really, I felt upset about the world, but I never felt the world was,
01:52:50
Speaker
completely giving me a hard time. I would have moments of thinking that, but it wouldn't be like my whole life, like it wouldn't go on for days or weeks, but I would have moments of self-pity. And I think there are healthy amounts of self-pity, I do believe. You just have empathy as well if you look at it in different ways.
01:53:12
Speaker
slightly better way. And it's a slightly different mindset, because you're actually acknowledging the pain rather than, you know, completely developing you. But yeah, but luckily, the councilor I've been with recently is
01:53:27
Speaker
I've been very good at explaining things in a way that's, I suppose, quite tangible and understandable. But yes, it sounds to me like you've come to a similar place in your life where you're building up rather than being stagnant, which is a horrible place to be. Yeah.
01:53:50
Speaker
you're pulled back by your past and your past experiences. It's not a good place to be in. But I guess trying to get us back on track in terms of the questions.
Strategies for Empathy and Acceptance
01:54:05
Speaker
I mean, one last thing that I would like to ask
01:54:07
Speaker
And I'm kind of looking for something kind of a bit more short, some kind of like practical lessons that people can kind of take away from our talk. What kind of what things do you wish that people understood more about?
01:54:25
Speaker
socializing, communicating with people with visual disorders? What would be your suggestion? I would say that the first thing is that we've got to understand that firstly that they exist. I know that sounds really obvious, but firstly, just the basic reality that these visual perceptual challenges exist in the context of autism. The second thing, the practical aspect is,
01:54:53
Speaker
If someone is a non-visual thinker, you have to try and, if you can, adorn their reality to some degree. It's not going to be a complete carbon coffee, but try and think about, right, so if this person has visual perceptual challenges, it's about getting to that mindset of thinking about how they see you, how they see the environment. The next thing is about putting
01:55:18
Speaker
So first is kind of awareness exists. The second is trying to merge and empathize. The third is practical. So with people with the visual perceptual challenges, which I've described, you may have to use gestural language. And if you notice when I talk, it's very gesture-based. If you notice the way I talk with my hands,
01:55:44
Speaker
which isn't completely unique, but there is a reason why. And it's about if modeling kind of the way in which I speak with what I'm saying, so that can aid tracking. It may be that you need to use objects of reference, so tracking objects and creating potentially the object or multiple objects as focal points to aim with tracking and multitracking. Because if you're living in a monotrap world and pictures don't work,
01:56:14
Speaker
So pictures aren't giving you what you need to create that association. They may need objects. They also may need to touch and experience the objects, not just look at them and watch the tracking. They may need to smell them. They may need to sniff them. They may need to hold them and experience them. Their hands may be their eyes and ears.
01:56:38
Speaker
The last thing I would say is that with that in mind, when you're working with people who are object blind, meaning blind, hopefully we've been open-minded, diligent, willing to learn, willing to fail. And the reason why I say willing to fail is failure is a friend. If this doesn't work,
01:57:02
Speaker
Rather than taking the sting out of failure, let's think, okay, let's try something else. If you're working with these children that may be object blind, they're extensively face blind, where they're going up to people and sniffing people's hair, or they're sculpting faces, or they're nuzzling into arms.
01:57:19
Speaker
Rather than seeing that as a problem, let's try and understand it. Okay, are they face blind and they need context? That is Paul, or that is Thomas, or that is Olivia. So that would be my recommendation that we have to actually start thinking outside the box. We have to start thinking about
01:57:44
Speaker
how we can use our own bodies, our own language to create meaningful connections. And finally, I suppose it's all about ethos and your own internal willingness to learn. Awesome.
01:58:02
Speaker
Well, thank you very much for that, Paul. I think it'd be good to kind of try and wrap things up. Cause we've been, I think we've been talking for a while and I always say this because, you know, I'm not very good at wrapping things up and I very much like to continue diving into the details as much as possible. So that's very much.
01:58:21
Speaker
It's been very much very interesting to hear about your experiences and seeing the world from your own eyes, from childhood to adulthood, some of the difficulties that is presented, some of the ways that you've kind of learned to understand and process past experiences, as well as kind of giving us a good summary of things to keep in mind when communicating, socializing, being around people with visual differences.
Fond Memories of 'You Spin Me' Song
01:58:51
Speaker
Do you have a song of the day, a song that is either related to the topic of the podcast or just one that means a lot to you that you could share others? Oh yeah, I believe. Yeah, I shared that with you. You spin me, which is an interesting one really, because
01:59:12
Speaker
I like 80s music and I got more heavily into 80s music. Funnily enough, when I started working, yeah, so You Spin Me was harking back to my youth. Me and my friend Chris, he was a colleague of mine. We used to play it all the time. He seemed to like it as well. Every time we were in the car, we're in his car together.
01:59:39
Speaker
We were always, I got the album that's on Youthquake and I used to play it probably too much. I used to play it in his car while I was baking when I was up in the warehouse. I think it annoyed a lot of people. Even in the staff room once and a line manager had to
02:00:02
Speaker
abruptly turn it off. So yeah, it's just one of my favorite songs. It's one of my go to songs. It's just lasted so long in my mind. Usually you listen to a song and you can kind of put it away and you don't listen to it for weeks and months or years. But that song is because it's so catchy and it's quite fun.
02:00:27
Speaker
It's not, it's quite light actually. It's quite pamp. It's disco. It's very gay and I like gay disco. I think Divine is another, she was a drag queen who'd done a lot of really cheap, nasty sounding records.
02:00:43
Speaker
And I mean that in a positive sense, you know, really cheap sounding. Couldn't sing a note, but it was just brilliant to listen to as odd as that sounds. So yeah. So you just made me write rounds like a record. That's the one. Yeah. Awesome.
Paul's Online Resources
02:01:00
Speaker
Well, Paul, do you have any links to anything that you would like to share with the viewers about anything that you'd like to check out?
02:01:10
Speaker
Yeah, absolutely. I've got a blog, which is WordPress. So if you Google Paul Isaac's Autism blog, Autism from the Inside, that is my WordPress blog, which I'm not as regular as I used to be because I'm busy doing other things. But there's about, goodness me, there's nearly 10 years worth of blogging on that. Not to be confused with Paul McCallough from Autism from the Inside.
02:01:40
Speaker
Yes, that's a good, if there's anyone else similar, what else? I'm on Twitter, Paul Isaacs22, although I tweet not as much, I personally find tweeting difficult. Yes, me too. And not to sound too cynical, Mr Elon Musk, but yeah, tweeting, you're hard to have a discussion with a tweet.
02:02:06
Speaker
A lot of miscommunication we're tweeting. I'm on Instagram. Again, Paul Isaac. Stay Puft. Stay Puft 12. That's a Ghostbusters reference. If anybody wonders why and my grandparents house number. Also check out the podcast. What was the name of the podcast? Oh, Paul and Olivia, the Neurodivergent podcast.
02:02:33
Speaker
And that was co-created by myself and Olivia. Olivia is very modest. She's really the driving force behind the podcast. Olivia's World. And she's also on Instagram. I think the final thing I can give you is I've got a Google site, which I'll be updating soon because of a
02:03:00
Speaker
very exciting ventures I'm doing. So if you Google Paul Isaac's autism site or Google site, you can get my website. So thank you very much. I will put all that stuff down in the description. Well, you can find my link tree down in the description if you want to go check out the 4DOD podcast on any of our podcasting streaming service, as well as YouTube, where you can find different clips of me, as well as shorts.
Thomas Henley's Public Engagements
02:03:27
Speaker
My Instagram, which is not currently
02:03:30
Speaker
kind of live at the moment. I'm not really posting a lot but I'm posting a lot of stories. It's at Thomas Henley UK. Head over to there to get kind of daily
02:03:39
Speaker
usually daily blogs, daily reels, podcasts, clips and shorts and things like that. And yeah, if you are interested in hiring me for anything, for any public speaking, for any events, any guests, interviews, things like that, just contact me either through my Instagram or preferably through my email address, hi at thomashenley.co.uk. You can visit my website as well to check out on all the other stuff that I've done.
02:04:07
Speaker
and some of the reviews, testimonials, things like that. But yeah, I hope you have enjoyed this, and if you have, please make sure to give it a rate, give it a like if you're on YouTube, subscribe, join a membership, follow, whatever your platform is, and that would be really, really appreciated as an independent creator like myself. It is very much important for getting my message out for more people, two more people.
02:04:33
Speaker
And I suppose my last question is, Paul, have you enjoyed your 4T audio experience? Oh, yes. Yeah, very much so. Even if I don't always show it, I have enjoyed it very, very much. I enjoyed the flow of conversation and where the conversations went. Yeah, it was an excellent experience. Thank you. Great. I'm seeking that external validation.
02:04:59
Speaker
No, no, no, it's absolutely fine. And in the context, why wouldn't you ask if it's your podcast? I asked for audience feedback, you know, so it's a similar thing. All righty. Well, it's been absolutely lovely, Paul. Great conversation. And I will see you all next week for another episode of the 40 Orte podcast. See you later, guys.