Re-Run: Dr Luke Beardon – Changing The Autism Narrative

Summary

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Podcast Summary: The Neurodivergent Experience

Episode: Re-Run – Dr Luke Beardon: Changing The Autism Narrative

Hosts: Jordan James (“The Autistic Photographer”) & Simon Scott
Guest: Dr Luke Beardon (Senior Lecturer at Sheffield Hallam University, Author)
Release Date: September 24, 2025

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Overview

This episode revisits a foundational interview with Dr Luke Beardon, a prominent autistic advocate, lecturer, and author at Sheffield Hallam University. In a climate of renewed misinformation about autism promoted by public figures, hosts Jordan and Simon bring Dr Beardon back to challenge the pathological narratives surrounding autism. Together, they address language, systemic stereotyping, the importance of autistic-led spaces, and why narratives about autism must center authentic neurodivergent experiences—not fear, stigma, or supposed “cures.”

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Key Topics & Insights

1. The Power of Language and Narrative

(05:52–12:00)

• Dr Beardon emphasizes that most societal narratives around autism remain negative, portray autism as impairment, and are perpetuated even in clinical and educational circles.
• The diagnostic manuals and media, by default, transmit a message that autistic people are “lesser.”
• Quote [10:12] (Dr Beardon):
  "The majority of narratives around autism in everyday society are negative and dripping with pathology… If you took out ‘autism’ and put in another minority group, there would be an outcry.”

On Pejorative Language

• Highlights microaggressions in language: concerns, red flags, warnings—creating a climate of trauma and 'othering'.
• Quote [18:53] (Dr Beardon):
  “Just question everything people say about autism… most is either incorrect or outright misinformation.”

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2. The Shift Towards Autistic-Driven Learning Environments

(05:52–08:43)

• Sheffield Hallam’s postgraduate autism courses now enroll mostly autistic students—a major shift from being teacher-dominated.
• Autistic students report feeling safer to engage, unlike traditional settings where autism is discussed pejoratively.

Quote [07:12] (Dr Beardon):
“It’s a safe space for them. So much of the arena where autism is discussed makes autistic people feel incredibly unsafe because the narrative is negative.”

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3. Challenging 'Us vs Them', The Hero Complex & Calls for Symbiosis

(11:00–13:57)

• Jordan critiques the “hero complex” among neurotypical allies and tokenistic corporate awareness initiatives.

• Dr Beardon and Jordan agree: non-autistic and autistic people need each other—a genuinely symbiotic relationship.

• Quote [11:50] (Dr Beardon):
  “I don’t like the us and them narrative… The autistic world probably wouldn’t do very well without the non-autistic world, but equally, the non-autistic world wouldn’t do well at all without the autistic world.”

• Jordan discusses being labeled “militant” for passionate advocacy, and distinguishes advocating for himself/family versus “representing” all autistic people.

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4. Identity, Validation, and Navigating Diagnosis

(17:04–23:05)

• Simon shares his journey of late diagnosis, feelings of isolation, and the reassurance found in affirming, autistic-led communities.
• Dismissive or gaslighting experiences from professionals (e.g., being told you “can’t” be autistic because you make eye contact or show empathy) are discussed and critiqued.
• Quote [23:05] (Jordan):
  “I get dozens of messages: my child was denied a diagnosis because of fleeting eye contact… I faked it—because I’ve had to, all my life.”

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5. Media Stereotypes and Internalized Doubt

(28:20–33:23)

• Mainstream media and poor clinical understanding result in many newly diagnosed adults doubting their own authenticity, especially women.

• Jordan’s wife, though diagnosed, questions her autism because she doesn’t fit the narrow, media-enforced stereotype.

• Quote [31:09] (Dr Beardon):
  “There’s no such thing as two autistic people who are the same… It’s such a common thing for autistic people to question themselves because they’re not similar enough to the person next to them. But you can have individuality and be part of a group at the same time.”

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6. Contesting the 'Functioning Labels' and “Despite/Because” Language

(37:16–51:27)

• The hosts reject “high-functioning”/“low-functioning” labels, noting how these can cap potential and obscure shared struggles.

• Jordan reframes achievement and talent—not as “despite” autism but “because of”:
  Quote [41:15] (Jordan):
  “I am not a great photographer despite being autistic. I am a great photographer because I’m autistic. One word difference—despite to because—has helped so many people feel better about themselves.”

• Dr Beardon presents his “Golden Equation”:
  Autism + Environment = Outcome

  • Struggles don’t spring from autism per se, but the collision with an unsupportive environment.

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7. Microaggressions, Masking, and the Limits of Neurotypical Understanding

(56:24–64:13)

• The hosts and Dr Beardon dissect masking: for autistic people, it is intensely energy-consuming, distressing, and can lead to collapse after social effort.

• Neurotypical masking is not equivalent:
  Quote [57:38] (Dr Beardon):
  “I agree everybody does mask some of the time. But does that mean a PNT’s understanding of masking is the same as an autistic’s? No, not at all.”

• Common communication breakdowns are likened to Wittgenstein’s Lion: even using the same language, concepts mean different things for neurotypical and autistic people.

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8. Sensory Sensitivities, Energy Management, and Environmental Fit

(61:37–68:35)

• Autistic sensory realities are qualitatively different—not simply an amplified neurotypical experience.
• Discusses the constant need for recovery, the toll of masking, and the imperative to identify what drains vs. restores energy.
• Dr Beardon urges charting/awareness of what situations sap or grant energy, to avoid being in a perpetual negative “spoon state.”

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Notable Quotes & Moments

• [10:32] Dr Beardon: “If [this negativity] were said about any other minority group, there’d be outrage. When it’s autistic people, nobody seems to grumble.”
• [17:04] Dr Beardon to Simon: “Congratulations on your discovery of your authenticity. You’ve got lots of fun ahead.”
• [43:48] Dr Beardon (on the “Golden Equation”): “Autism plus environment equals outcome. If you want to change the outcome, you have to change the environment.”
• [57:38] Dr Beardon (on masking): “Are you consciously aware, does it take enormous energy, afterward do you need to recover? For NTs: no, no, no. For autistics: yes, yes, yes. Exact same word—totally different experiences.”

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Key Timestamps

• 03:25 – Show introduction, guest welcome
• 05:52 – Rise of autistic students in autism studies
• 08:43 – The problem with negative language in professional/clinical settings
• 13:57 – Symbiotic relationship, not “us vs them”
• 17:04 – Late diagnosis and the struggle for validation
• 23:05 – The eye contact myth and diagnostic microaggressions
• 28:20 – Identity crisis from stereotypes, especially for women
• 31:09 – No two autistic people are the same; individuality in the community
• 37:16 – Dangers and limitations of functioning labels
• 41:15 – “Despite” vs “because” language for positive reframing
• 43:48 – “Autism + Environment = Outcome”—the golden equation
• 56:24 – Masking: differences between autistic and neurotypical experiences
• 61:37 – How can autistic people know what’s “normal” for senses/emotions?
• 66:41 – The toll of having to always compromise in a neurotypical world
• 68:35 – Charting energy drains and gains for well-being

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Final Thoughts

This conversation is a call to action for society, professionals, and individuals to reflect on the narratives and language used around autism. Instead of viewing autism as a problem to be solved, the hosts and Dr Beardon advocate for a culture where autistic voices, expertise, and lived realities are centered. They underline the urgent need for autistic-led spaces, authentic representation, and the power found in reframing—where neurodivergence is recognized both in its challenges and its contributive brilliance.

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If you found the discussion meaningful, check out Dr Beardon’s books, explore more episodes of The Neurodivergent Experience, and follow their advocacy for a more inclusive world.

Transcript

[A]

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[B]

Hey there. If you've ever felt your confidence slip at work, you're not alone. The good news? Confidence isn't a fixed trait. It's a skill. And like any skill, you can build it with the right tools and practice. I'm Ann Morris, CEO and bestselling author, and together with my wife Frances Frey, a professor at Harvard Business School, we host the TED podcast Fixable. This season, we're zeroing in on confidence, what it really is, how to strengthen it, and how to help others see you as the leader you already are. So if you're ready to show up with more conviction, to get promoted, to lead with clarity, to do the best work of your career, join us on Fixable. Wherever you get your podcasts.

[A]

ACAST helps creators launch, grow and monetize their podcasts everywhere. Acast.com hi everyone, it's Simon here, and welcome back to the podcast. This week we haven't been able to record our usual Thursday episode. This has partially been down to Jordan and I having a really busy schedule this week, and also, as you can hear in my voice, I'm a little bit under the weather. But in a way, this gave us a chance to revisit an episode that feels especially important right now. You may have seen that both Donald Trump and R.F. kennedy Jr. Have been making statements linking paracetamol to autism. These kind of claims aren't new, and they're part of a long history of misinformation that seeks to pin autism on external causes rather than recognizing autism as a natural and valid form of human diversity. And why does this matter? Well, because language and narrative shape how autistic people are understood, supported, and valued in society. When powerful figures spread unfounded claims, it fuels stigma, fear, and search for causes and cures instead of promoting acceptance, understanding, and inclusion. We will be discussing this in length in a Hot Topic episode, which will be coming tomorrow. But in the meantime, we thought that this was the perfect time to revisit a conversation that we had with Dr. Luke Bearden right at the beginning of this show. He is a senior Lecturer in Autism at Sheffield Hallam University and author of several influential works on autism. In this episode, we discuss with Dr. Luke why the words we use matter, how misinformation gets spread, sometimes even by professionals, as we're seeing today, and the harm caused by us versus them thinking. We discuss the challenges of identity for those diagnosed later in life and the criticism that many autistic people face when labeled as high functioning. I think it's a powerful and affirming conversation that reminds us that autistic voices and expertise should be at the center of how we talk about autism. Not fear mongering, not pseudoscience, and not politicians using autism as a political football. So while I rest my voice and get ready to bring you a fresh Hot Topic episode tomorrow on this story of Donald Trump and RFK linking paracetamol Tylenol to autism, I hope you'll take as much from this conversation with Dr. Luke Bearden as I did.

[C]

Hello and welcome to the neurodivergent Experience. I'm Jordan James, also known as the autistic photographer, and I'm joined by my co host and very good friend Simon Scott.

[A]

For this episode of the Neurodivergent Experience, we are talking to Dr. Luke Bearden, senior lecturer in autism at the Autism center of Sheffield Hallam University. He's the author of six books and currently writing a seven.

[C]

Hi, Luke.

[B]

I never know where to say good morning, good afternoon, good evening, good night.

[C]

Well, it's the morning, so do that.

[B]

Well, yeah, I'll say all of it. Good, good, good. Good morning, good afternoon, good lunchtime, good evening, good night, Happy New Year.

[C]

Well, that was a long podcast. It's, it's, it's nice to. Nice to wrap it up. Right, see you later, everyone. Right, Luke, how long have we known each other?

[B]

Now, that's a good question. I was gonna say I'm not very good with time, but actually I am. It was London. I want to say 2018, but it might be.

[C]

Yeah, it was, it was quite early. It was quite early in my journey. And yeah, I reached out to you because you were one of the only people that I had found that was thinking like I was thinking about autistic people and being neurodivergent. And I just sort of. I read your book. I can't remember which one it was. One of them.

[B]

I think it was autism and adults.

[C]

Yes, yes, yes. And it had the other name that we don't say anymore. You don't. The name that won't be named. And I just went, oh, wow, this guy is thinking exactly like me. And what I loved is the fact that it wasn't your book that made me think like that. I was thinking like that and then I read your book and it just gave my thoughts validation. And a lot of people within the community were reaching out to me in the early days, saying your name. And you are so highly respected within the community for everything that you say and everything that you do. And that was why I reached out to you and you responded, which really shocked me and delighted me at the same time. That's how we know each other. And then I went and did a talk with you.

[B]

Yeah. You're a guest lecturer or an associate lecturer, I suppose you would say, on the postgraduate certificate for. Awesome. Get that plug in earlier.

[C]

That's great.

[B]

Which I run twice a year. So, yeah, run it twice a year face to face and online to make it as accessible for people as possible. I'd quite like to know the answer to this. I'd like to say what you guys think, and by you guys, I mean you and also any of your listeners. One of the things I love about the Postgraduate Certificate in Autism and the MA in Autism at Sheffield Hallam is that when we first started running these courses, the majority of people were teachers. Now the majority of people are autistic, which I think is super cool.

[A]

That's incredible.

[B]

So my question is, am I one of the only, if not the only, course leader who can say that the majority of his students are autistic in the world?

[A]

Yes, I imagine so. Because I'll be honest, Luke, I had never thought that there would be a course, let alone an undergraduate, let alone a postgraduate in autism. I'm really new into this world, I'm new into the community, and it was a great surprise to find that not only are you teaching about autism and understanding it with research, but your students are autistic as well.

[C]

Yeah.

[B]

Yeah.

[A]

What do you think it is that has been the big change? What has been the transition from seeing more educators and then suddenly you're seeing more autistic people coming to learn about themselves, about our neurotype.

[B]

I suppose the first thing to say is they're not mutually exclusive. So a lot of our students are autistic teachers, which is even cooler, in a sense. And autistic GPs and autistic psychotherapists, et cetera, et cetera, et cetera. Whether they declare that or not in terms of their professions, that's a different matter that maybe we'll come on to later. Actually, I like to think. I really do like to think this. Whether it's true or not, it's not really for me to say, but I believe that the course itself has gained a reputation over the years. So I think we first started teaching maybe 2000. I want to say 2003. So it's been going over 20 years, and I think over the years it's. It mostly gains reputation by word of mouth. So a lot of my students come on saying, oh yeah, it was my friend that told me, it was my husband that came on, it was somebody else at work or whatever. And I think that narrative within the autistic community and the autism community, which I think are different things, has led to it becoming more increasingly popular. I think one of the things that. Well, I don't think I know. One of the things that a lot of my students say, not all of them, but a lot of my autistic students suggest, is that it's a safe space for them to engage in an area that is almost by definition very close to their hearts. Whereas a lot of the arenas in which autism is discussed. So conferences or talks of various kinds or training events often make autistic people feel incredibly unsafe because the narrative is negative, for whatever reason.

[A]

I can relate to that.

[B]

I was going to say people aren't being respectful towards the autistic community. Sometimes it's far worse than that in terms of even using pejorative language. Or I say that I say that almost lightly, almost using pejorative language. Using pejorative language is a massive insult to autistic people, in my view. And yet you go towards some conferences and so much of the discourse is pejorative in nature. Is that horrendous? I'm really into this sort of idea of ethnocentricity where populations, for whatever reason, feel that they're superior to others. And I don't think that the, what I call the predominant neurotype, I don't think that the PNT feel superior to neurodivergent individuals. But I think there is an almost subconscious acceptance because of the discourse over the last, let's say, 50 years of being told, and the media and the generic discourse around clinical circles as well, that neurodivergent individuals are diagnosed thus because they are somehow impaired. And that is what the narrative is. That's what the diagnostic manuals tell you, that an autistic person is somehow lesser than a non autistic person because they are impaired in various skills that apparently the non autistic population have. So I think as a direct result of all of those narratives and those discourses that flood, absolutely flood the common parlance when it comes to relating the generic society, relating their understanding of autism, then they're almost, by definition, it leads onto this lesser than narrative and it's almost become accepted and it blows my mind, what is autism or whatever, Then so much of that narrative will be negative.

[A]

I can back that up. Absolutely, yeah.

[B]

Promise you it's the case. I know it's case because some of my students do it as part of their research projects. If that is the case, and we accept that's the case, if you were to then take away autism and put in another minority group, there would be an outcry. There'd be an absolute outcry. People would be cancelled left, right and centre. And yet nobody seems to be grumbling about it or not. As many people as should be seem to be grumbling about it when it's directed at the autistic community.

[C]

I have a theory why people keep pushing this narrative of negativity, of broken entities. I actually do think that there is a hero complex within the neurotypical community when it comes to them being allies or, you know, supporters of, you know, autistic individuals and, you know, wearing T shirts with puzzle pieces and I love someone with autism. There's definitely a hero complex of, look at me, I'm a great person. And companies do this as well, where they celebrate Autism Week, Autism Month, and they make a big show of it the first of the following month. They couldn't give a rat, they don't care. And it's like, oh, we care about autism. And then, oh, that month is over. And we're like, we still exist, we still need support, we still need help. And they're like, well, no, your month is done now. So, you know, we're on to something different now.

[B]

There is some elements of that in the fact that we still have. Awesome. I can't bear the term awareness. It's like, why do you need to be aware? Exists population, Watch out guys, come into a street near you or beware, even don't be aware. Beware. No, but I think there are. There are loads of non autistic people out there who are massive allies that. Without whom there wouldn't be the advances in support and acceptance and knowledge and all of those sorts of things. I'm of the opinion that I. I don't like the sort of us and then them narrative either way, this sort of symbiotic relationship that I like to think, because I'm quite an optimistic person, I think that the autistic world probably wouldn't do very well without the non autistic world, but equally the non autistic world wouldn't do very well at all without the autistic world. I agree with that and I think that's towards. That kind of harmonious existence is when there's a clash between the two that's where there are huge problems. So when you've got either individuals or communities not listening to the autistic community or the other way around in terms of like genuinely listening and going, okay, yeah, you have got a point, we see it differently. Yeah, you've got a point, but we see it differently. Right, let's try and work out a commonality in terms of the way forward for society or mankind or humankind or whatever, then that's where, where things have broken down over the years anyway.

[C]

So do you think that I come across as an us versus them?

[B]

I think you're so. The way I would say is you're so passionate and single mindedly passionate around being neurodivergent and the fact that most neurodivergent individuals are seen or, or struggle at the hands of society, that you fight that fight in a way that could come across to others as fairly military.

[C]

Yeah, I've been told that the minority.

[B]

Groups need those individuals to stand up. And, and those are the reputations all the way right back to Rosie Parks. You know that people have got those troublemakers, haven't they? I'm the troublemaker beyond everybody else.

[C]

But I just, I would like to make it very clear, I've always said that, you know, this is evolution, okay? We are supposed to exist, we are supposed to have diversity in thinking. This is part of evolution. And I do not believe that it is the next stage in evolution as some people peddle that idea. I believe that we evolved alongside neurotypicals because we need a balance in thinking and 100% we need them as much as they need us. And a symbiotic relationship is exactly, I would agree with you, that's exactly how I would describe it. Because we do need each other. And that's what I'm passionate about is because neurotypicals don't seem to think that they do need us. They seem to think that we are someone, we have to be looked after, that we're like a burden on society rather than the individuals throughout history that have changed society for the better or the worse. We as individuals have made a massive humongous impact on society as we know it with technology and advances in science and discovery. You know, I could I say a million times about the autistic mind. It is an amazing part of evolution, but it is a part and we play our part. And all I ask for is the respect, the positivity that we deserve. Because like you said, everything is negative. Everything. And Simon will contest this because he is newly on his journey. And the reason why we connected, the reason why he reached out to me was because I was the first person. And I've been told this many times, Luke, you know this. I am the first person that anybody has ever heard say anything positive about being autistic. And that is horrific. I should not be the first person. I should not be on this island. I'm not. There are amazing people like yourself, like so many advocates that are out there showing the positivities and it's not toxic positivity because it's not like I'm just saying, oh, that's amazing. And we have no problems at all. I will openly talk about the problems, we have the solutions to a lot of those problems. And I will openly talk about the benefits of the autistic brain throughout history. And for me, myself, due to my photography, my ability to write, everything that I do, I can put down to my neurodivergent mind and my hyper focus and learning that tree, learning that we love. And yeah, so if I ever do come across as us versus them, it's literally more of like a. I don't feel like that, but I feel like I have to be extra defensive from my community because no one else is apart from us. Yes, there are so many neurotypicals who are allies and have really helped and help every day and you know, I appreciate them, but it's still peddling this idea that we are broken versions of neurotypicals.

[B]

And that's the thing, that's probably the most deep rooted issue that I've got within the autism field. So congratulations, Simon, on your discovery of your authenticity.

[A]

Thank you.

[B]

You've got lots of fun ahead of you, I would suggest.

[A]

I've already had a lot of fun, Luke. It's like Jordan was saying, I will back it up. Until I met Jordan and he's introduced me to people like you and other guests that we've spoken to. I genuinely felt very isolated, very alone, and I could not trust anybody because they didn't have my best interests at heart. If somebody says to your face, you are broken and I'm better than you because you're broken, it's very hard to have a positive relationship with people. One of the things that I like about Jordan's sometimes abrasive approach to how he speaks to neurotypical people is he's going to bat for me. I can't speak like that. And it's, it's his ability to be able to articulate himself and educate people in a way where He. Well, the other thing as well is Jordan spent a lot of his life being told he's broken as well. And it's very hard to sometimes let that go when you're battling an ego that goes, no, you're wrong, you're wrong. It's very hard when you feel right and you know you're right and you're talking to somebody that doesn't understand it. It's. It's impossible to not get frustrated. And I think the way that Jordan can balance his feeling, actually I respect a lot because I find when I try to defend myself, I can't control my emotions. I just, I lose myself.

[B]

Totally agree. One of the things, the very first line I ever wrote in the first book that I got published is never believe anything you read about autism, which I still maintain is a great start to a book written about autism. Very good.

[A]

What a perfect line.

[B]

And all it is, is, I'm saying, look, just question everything that people say because much of what people say, if not most of what is said about autism is either incorrect or downright, you know, it's misinformation in a sense. Going back to what you were saying, Simon, one of the things, and I get so passionate about this is this idea of microaggressions around discourse. I think I might write a book called Language Matters and just to just touch, get people to understand. Today's the first time I've met you, Simon. Obviously I know Jordan. I have known him for years, but I'd be. Maybe now's not the, the right platform. I don't know. But I'd be interested to know your perspective on this. But so often the very first time a person, autistic or not, comes into is, encounters, knowingly encounters autism as a concept, it's negative. So the parent will hear a teacher saying, we've got concerns about your child. Concerns. You're concerned that they're autistic. That's, that's negative straight away. Oh, your child's behavior is raising red flags. Red flags, danger. So again, you associate. All of these things are in everyday discourse in relation to you as human beings, and those are microaggressions that leads, can lead to trauma. If you're exposed to those day after day after day after day. And then going back to what you were saying, Simon, when you try and explain your own position and then people refute it, that's non coercive gaslighting. So the fact that it's non coercive doesn't really matter. I mean, it sort of Matters as a principle, but. And I don't think people mean to do it, but it's still. And professional gaslighting is out there. You know, how many of you listening have gone to the GP saying, oh, do you know what? I'm quite excited. I think I might have discovered I might be autistic. For the GP to go, don't be ridiculous, or you can't be because of this, or you must essentially professional gaslighting and then you have to go and question your own. Well, actually, I really thought I was, but the doctor says I'm not. So maybe I just, I'm an anomaly of a human being or whatever.

[A]

You're repeating my experience back to me. Yeah.

[C]

A friend of mine, he was, his son was going through the diagnosis and he called up his GP because that, you know, he was like, you know, I might be autistic and I want to be there for my son. You know, my son is autistic, he's going through that process. I want to be able to support him and show him, you know, that being autistic is great. And this is a young doctor, which really frightened me more than anything because young doctors should have better information. They said, oh, you can't be autistic because you have empathy for your son. Like, that's like the most crappy old fashioned nonsense. And this was only like four years ago, so he had to go private to be taken seriously the, the diagnosis. Because, I mean, the first day I met him I was like, yeah, you're autistic, dude. And he's like, thank you.

[B]

You know what, the irony of that. And I'm, I'm saying this slightly tongue in cheek because I'm aware that this is public and I'm aware that people have got very different opinions, but the only being, it probably would have been more legitimate for the GP to say, well, you can't be autistic because you don't have empathy for your autistic son. Yes, that would actually make more sense. I mean, it has. There is some fantastic clinicians out there. Some of them come on my course, some of them, I think by definition the ones who do come on my course are there because they, you know, they've realized that actually their own training hasn't been necessarily at the forefront of autism thinking and what have you. And I hear some amazing stories from individuals who've had brilliant times going to their gp. Sometimes gps contact me and say, oh, I've had this individual, you know, who's given me their permission and I'm not a clinician. I always say, look, you know, I don't know why you're talking. I can't come from a clinical perspective, it's brilliant that those individuals are reaching out. Equally, however, is that sort of vicarious understanding of what the real lived experiences are by people contacting you and saying, well, I've been rejected because of this, or I just think the notion you can start a sentence with you can't be autistic because should just be eradicated.

[C]

I agree. And the worst one, Luke. And I've had messages I get, and the comments as well. Anytime I write anything about eye contact, I must get like dozens and dozens of comments of my child was actually went through the entire process and then was denied a diagnosis because of eye contact. Fleeting, fleeting eye contact. And I actually had this experience myself when I went and got my ADHD assessment. By his own admittance, the psychiatrist that was assessing me said he didn't know anything about autism, which I thought was crazy, because it's like, absolutely, anybody who studies autism should learn about adhd, have a good working knowledge, because the two are so linked so often that you should know about both because we do need help and we do need support for both positively and negatively. He actually wrote on. On the assessment gives great eye contact. I'm like, one, what's that got to do with adhd? And two, I absolutely didn't. I faked. Yeah, I faked it because I've had to all my life. So when I finally, you know, I had my. My next meeting with him, I brought it up and I was like, dude, what are you talking about? I have. I've never looked at you in the eyes. I can't do that. That's horrific. And he said, really? I said, yeah, I fake it. I look at your nose, I look at your mouth. I look, you know, just above your head. I will look everywhere but your eyes, but you won't notice. And he was like, okay, well, I didn't know that. And I'm so glad that you told me that, because the thing is, he was a young guy and, oh, my God, we always talk about cognitive dissonance, right? So if you're trying to explain something and someone's like, you know, in a professional stance, and they'll go, no, no, no, no, no. I know what I'm talking about because I'm the professional. He didn't have any of that. In fact, he actually got a copy of the book the Autistic Experience, and he went and read it, and it opened his eyes up to a whole new world. And he actually passed it on to my local cams, who now have it. And it's now actually changing the way that they do things within the, the entire structure of that building. Simply because I spoke up and said, look, I disagree with this. And I explained to him properly, I mean, advocating is so important. But what's more important is when you're advocating the person in the position of power, the so called professional, they need to listen and that doesn't happen enough.

[B]

Well, that's a really cool story in that, you know, engaging with somebody who will listen. I love it when people go, oh, do you know what? I really haven't got a clue. Let's learn together or whatever. The eye contact one is brilliant. And if there's one message you get across to anybody who might be listening that believes in inverted confidence, believes in eye contact. It blew me away when I learned this because I don't have eye contact. I look at people's teeth constantly. People get worried then about that. Yeah, but I love particularly pointy fangs. I get quite excited when I come across somebody with nice pointy fangs. But when I remember talking to somebody and I was speaking at conferences before I was due to go on, and I think they were a psychiatrist and I was in that awful situation where you have to sort of mingle and talk to people. But it was over lunch and he was saying, oh, that's how he came up. That's why he started talking to me. So you don't appear to be eating. Can I get you some lunch? And I said, oh, I don't eat lunch. And he was like, oh, you'll, you'll faint this afternoon. I was like, no, I won't. I haven't eaten, I've never fainted yet. I don't think I'm going to start now. And I was already thinking, why does this guy know more about me than I do? This is really strange. Anyway, we were talking about autism and he's mentioned eye contact. And I said, oh, well, you know, you need to be a bit careful about the whole eye contact thing. It's not necessarily that bad. I said, I've got through life quite well with never engaging in eye contact. And he said, oh, but you do. And I was like, oh, maybe I've misunderstood what using eye contact is. I said, I don't look at people's eyes, if that's what you mean. And he said, and he was really insistent. He says, yes, but you do. And I remember thinking, wow, this guy actually knows what my eyeballs do. I'm me. Surely I know what my eyeballs are doing. It suddenly dawned on me that because I learned from a very, very, very young age, oh, you've got to. You've got to maintain eye contact. And if you don't like that, for whatever reason, and by the way, that for whatever reason is valid. So don't ever let anybody tell you, no, it's not valid not to have eye contact. You know, if you don't like it, don't do it. And don't believe other people who say, oh, you get lots of information. Well, no, you don't. That's the whole point. Anyway. That's. That's a different thing. I realized from a very young age that if you look at people's mouths, they really, really think you're looking at them in the eye, which is fine. But what I really didn't realize is some people genuinely believe they know more than you do about your own existence. And that was a really, really positive lesson. It was quite shocking. I remember I was only a teenager at the time. And I think that sort of knowledge that then subsequently potentially protects you against that sort of, I say, gaslighting. It sounds a bit dramatic, but that sort of questioning of your reality is so important for neurodivergent individuals to embrace and engage and understand as an armor against other people who might think they know better.

[C]

I actually do think it's gaslighting, and I think that it's incredibly damaging because it's hard enough, especially when you're. When you're late, diagnosed as an adult. It's hard enough to be taken seriously, especially when you appear like myself or Simon. And, you know, you don't have the obvious, the look of autism, which definitely, definitely exists. Not. And you do find that a lot of people will try and invalidate you. I had it immediately. A guy at my work said, oh, I watched a program about autism last night, and apparently they're not social at all. And you're really social, so you can't be autistic. And this was after my diagnosis. And I was like, cool, thanks for that, doctor. I really appreciate that. I'll go and tell the actual doctor that they were completely wrong now. Well done. You have undiagnosed me. I am. I am normal in your eyes now. And yeah, it was horrific, but I just sort of took it on the chin and just got on with it. But there is such an. Especially with, I think, female diagnosed adults, there's definitely this identity crisis. I mean, I I know I went through it, but I. I think that it's worse with women because there's less information about what makes a woman autistic out there. There isn't enough. So my wife absolutely goes through it almost daily where, you know, she's been diagnosed. She'll watch a program or see, you know, a documentary or something like that. And she's like, am I. Am. Are you sure I'm autistic? I'm like, babe, you have the. The diagnosis. You know you're autistic because you do all these things and you're capable of all these things. But then she watches something like Love on the Spectrum, and then she's like, but that. I'm not like that. And that's the problem when you've got media and information and misinformation all honed towards this negativity. This one type of autistic person is that it invalidates so many of us.

[B]

It doesn't crack me up because that's actually quite a sad tale. And I know so many people who are very, very similar who get their identity, and it's euphoric. It's like, oh, my God, this all makes sense. This all makes sense. So I've just read Temple Grandin's book, and I'm crap at talking to cows. I can't be autistic or whatever.

[A]

Yeah, that's been my experience for the past year and a half. I mean, I can even add to Jordan's story. About 10 years ago, I had a group of friends and I said to them, I genuinely think I might be autistic and neurodivergent. One of them was, and the other was neurotypical, but Sister was autistic. And they both went, no, you're not. You're not autistic. And it put me off for years. And then when I did get diagnosed, the same people went, nah, you're not. Even after I'd had a diagnosis, one.

[B]

Of the common things that literally everyone will agree on. Well, everyone who's anyone, is there's no such thing as two autistic people who are the same, which is just almost. It's a ridiculous thing to even consider. And yet it's such a common thing for autistic people to question themselves because they're not similar enough to the person sat next to them. And at an intellectual level, you know, it's all nonsense, but in reality, again, because there's this sort of homogenizing potentially, of what autism actually means by diagnostic criteria and so on, and so Forth, it becomes a real issue and it's so sad. I was in a room the other day teaching, and people just couldn't get their heads around, you know, how can you have a group of people who are autistic and who are linked together by that label of being autistic, but who are all individual? And in the end I just said, okay, do you all agree you're all humans and you all experience things similarly in as fact, as you are part of humanity, you're under that umbrella of humanity. And they all went, yeah, but you would also accept that you're different from every single other person in the room. And they said, yes. So it's as simple as that. You can have individuality and be part of a group at the same time. There's not a discrepancy between the two. There's a clear difference between sociability and autistic sociality. This is what I mean by words matter, language matters. Sociability's got nothing to do with autism. You can be massively sociable. I'm massively sociable with my cats. That doesn't make me non sociable. It just means I don't particularly like engaging with humans. The right human can't get enough of them. And again, it's sociality that is different. I think there's a different autistic sociality compared to the majority of how non autistic people engage. So, for example, social chitchat for most autistic people is just torturous and nonsensical and bizarre and odd and the pnt lovely way of passing the time. That's fine. There's no right or wrong. There's a clear difference in terms of sociality. But then for people to then apply sociability and accuse you then of not being sociable or being sociable and that somehow dictates who you are seems to me completely bizarre.

[C]

My experience is that as far as being social, it's moment to moment. I mean, I think generally just being autistic for me is just moment to moment. If the environment suddenly changes, then I'm disabled, and then in another environment, I'm superpowered, as it were. And I do have a wonderful ability of being able to socialize, you know, when I'm feeling it. But I did a talk for an organization and I was sort of testing the zoom link beforehand. And as far as I was concerned, I was in the middle of playing the Tomb Raider Remastered games. So I was like, this is just an inconvenience because you're stopping me doing the thing that I want to do. But I jumped on and the lady was really, really nice and the link worked. I was like, that's great. And I was about to go because Tomb Raider. And she's like, oh, how was your holiday? What about my holiday? What, why, What. What's happening? And Sylvia's sitting next to me. She goes. And she's like poking me. She's like, she's asking about the holiday. And I just said to Sylvia, but why? That's. That's not what we. And I just said, I'm sorry, I'm in the middle of playing Tomb Raider. I'll. I'll see you later. And then I just went, because I was like, this is not the moment for me to be sociable. I don't want to be. But then when I went on the zoom link later, when it was my time to talk, I was very sociable. It's like catching me unaware. As long as I can prepare for something, as long as I'm ready for something. But if you catch me unawares, I'm just like, no, that why I. Why are you asking about this? That's not what I agreed to.

[B]

In too many Chicago neighborhoods, access to fresh food is a luxury not a given. Gardeneers is working to change that by supporting school garden programs that empower students to grow their own produce, learn about nutrition and fight back against systemic food injustice. These aren't just gardens. Their pathways to health, education and equity. Learn how you can [e-mail] let's grow food justice in Chicago together.

[A]

This is a neurodivergent experience. Public ANNOUNCEMENT if you live in England and you or a loved one is waiting for an autism or ADHD assessment, you don't have to wait years. RTN Diagnostics is now part of the NHS Right to Choose scheme, which means if your local weight for a consultant led autism or ADHD assessment is more than 18 weeks, you can choose RTN instead and it won't cost you a penny. Jordan chose RTN for his own family because their care and attention to detail were second to none. They didn't just diagnose autism and adhd, they they looked at the full picture, including pda, ocd, anxiety and more. The team is friendly, neuroaffirming and comprises many neurodivergent individuals, so they truly understand. Getting started is simple. Download the GP referral letter and questionnaire from the link in our show notes, take those to your GP and ask for a referral to RTN diagnostics. If approved, RTN will be in touch within eight weeks to begin your assessment. Remember, this only applies in England and some exclusions do apply. RTN is not currently able to accept referrals for child ADHD assessments, so check the details before you start. RTN diagnostics, helping you get the answers you deserve without the wait.

[B]

It's sort of dawning on me that I'm not hosting this podcast. You two lovely creatures are. But turn it around for a bit. I want to ask a question. So what about the critics of people who say, yeah, but you're very intelligent, you're very articulate, you're very capable, you're able to do X functions. Don't say that. I'm always the one that gets asked these questions. So I wanted to ask you. But what about the people who genuinely is like, well, actually, I'm really struggling with my child. They, for whatever reason, they seem very unhappy. And we all know people like that.

[C]

I was like that when I was a kid.

[B]

Your autism, I'm not saying this. Can I just make it. But in terms of playing the devil's out, your autism is clearly not the same. You can't tell me what it's like because my child's not like that. And I know what all my arguments are. But just you two, what would your kind of position be on that?

[C]

When we first approached the school and we said, look, you know, I've been diagnosed autistic, 100%, my daughter is autistic, but, you know, it's hard to get a diagnosis at the moment. And the school turned around and said, yeah, yeah, we absolutely agree with you. And I was like, oh, thanks, thanks for telling me. But they said, yeah, but the thing is, there are kids that are more autistic than her. And at the time, this is way before I started my advocacy journey, at the time, I was like, that doesn't sound right. But I just sort of took it because they agreed to support her. And this is the problem with what you were saying earlier about this negative misinformation. It's always this, oh, it's bad, it's broken. People associate autism with, the worse you are, the more impaired you are, the less sociable you are, the less capable you are of living a, quote, unquote, normal life. The more autism you have, like, it's some sort of disease, like, almost like a cancer. And people literally think of autism as, like a cancer that attacks this brain of ours, this very normal brain, and destroys it. And the more of it you have, the worse you are. And that narrative is what absolutely causes all the problems. And I keep saying this, that we started with Dr. Kanner with this idea that autism is just this terrible thing that destroys a child and destroys a family. And all we've done is sort of added onto that, but we've never got away from that. So all the research that's done is done from. And it's really unscientific, by the way, when it comes to autism. Autism is always started with a piece of paper that says, disorder, condition, disability, bad, negative, awful. This is a thing that hurts someone. And then all the research is then done on top of that. But the research should start from what is this? What not causes this? Why is this here? It frustrates me so much that I don't have the credentials or the finances or the ability to do that research to bring these obvious things to me about it being part of evolution, that it's supposed to happen, and that it's all down to the synaptic pathways. We know this is true, but everyone is, when they talk about it, they talk about it like this is what has damaged a human. It's so frustrating. What I do try and tell these people is that behavior you're seeing is either environmental, it's either trauma based. It could even be ptsd. Children can have ptsd, they can go through one bad thing even as a baby, and that can negatively affect them as they're growing older. You know, like, like bitten by a dog. When you're very young, then you're scared of dogs. You wouldn't blame autism for a child being scared of dogs. You wouldn't say, oh, my child's more autistic because he doesn't like dogs. That's the problem is that parents, because of this misinformation, they are forced into thinking that everything negative about their child is autism and everything positive is them overcoming autism. And people say this to me all the time when it comes to my photography. Oh, look, you're this amazing photographer despite your autism. And this is why my existence is so important on social media. Because I constantly say I am not a great photographer despite being autistic. I am a great photographer because I'm autistic. Like you said, Luke, language matters. A one word difference from despite to because has helped so many people feel better about themselves. I get so many messages where people say, thank you. Thank you for being just you. Thank you for existing and talking about your journey. Because my kid or my. Or me or I felt terrible. Simon can attest to that. I don't think we shouldn't talk about the negative. I just don't think that we should just blame autism for everything bad. Because there are certain parts of being autistic that are very, very difficult. But to say, and I think this is the worst thing, is that when people invalidate my difficulties, that is also a terrible thing because they're basically saying that I'm mildly autistic. And that's, that's still something that people say. I'm mildly autistic. I only have a little bit of the autism. I'm on the fringes of it and I'm on the edge of the spectrum. And it's so horrific because there are some moments where I've been hugely, hugely disabled because of my hypersensitivity. Hugely disabled. And I associate being hypersensitive as being probably being the most autistic thing. I don't think neurotypicals will ever understand what it's like to be hypersensitive, to just have everything like all the volume is turned up to 10 and we have to put things in place to turn down the lights, to turn down the noises, to avoid certain things. But like I keep saying, and I'll keep saying, those exact problems become abilities in a completely different environment. And it's that hypersensitivity that makes me a great photographer because I can feel part of my environment.

[B]

So that leaves me beautifully, I hand over to Simon in a moment, but it just shoehorns my self professed golden equation, which I've got to mention because I mention it every single time I open my mouth. Autumn plus environment equals outcome. Autumn in itself just means autism doesn't mean you're going to be good at this, bad at that, have problems, not have problems, become, you know, the prime minister or end up homeless. It literally doesn't. Autism is autism. That's why it annoys when people make assumptions. Oh, you're autistic, therefore that must mean you're good at this or bad at that or. No, it just means if I tell you I'm autistic, it means I'm gonna die autistic, end of story. That's the only thing you can categorically know about a human being that discloses that, that is good enough to disclose to you that they are autistic. That's what I believe anyway. However, some individuals will really, really, really, really struggle with life. That doesn't mean they're struggling with life because they're autistic. They're struggling with life because of the combination of them plus the environment. And if you recognize that you can't change somebody being autistic, nor should you want to try to, the only thing left to change is the environment. If you want to change the outcome. And I'm absolutely convinced that individuals who are really struggling and as you say, Jordan, those, you know, behaviorally, you might see an individual who is showing distress. They're not showing distress because they're autistic. They're showing distress because they're distressed. They're not distressed because they're autistic. They're distressed because of the combination of who they are and the environment in which they're in. If you want to reduce that distress, then you need to change the environment, not try and change the person. I think that's where we go wrong so many times. And the sensory side of things is slightly different in that you can't change somebody's sensory sensitivities, but you can still change the environment. If we accept that, generally speaking, autistic people are in the minority, and we also accept that, generally speaking, society does things in a way that is advantageous to the majority, then that automatically puts autistic individuals at a disadvantage from day one. And I think that's what you're talking about, trauma and stress. If you're growing up being at a disadvantage right from they dot because of the way things are done around you, then that is going to lead to outcomes that are potentially negative to you. But I think they're negative because of the environment, not because of you as a human being.

[C]

So when, when I come across an individual and they, they ask me, oh, because I get asked a lot like I'm a guru or something, do you think I'm neurodivergent? I get asked that question all the time. I, look, I can't tell you one way or another. I can give you my opinion, but I can't tell you factual base, but I can give you my opinion, which is all they want. So then I don't do the obvious. I don't go, oh, do you struggle with this? Do you struggle with that? Do you. Can. Do you have problems with this? I never, ever do that. I say, what? Can you do this? Can you do this? Can you do that? I want to know what their abilities are, because I personally find it a lot easier to know if somebody is neurodivergent by talking about the things they can do and that they. They're capable of that I know neurotypical people can't do. Because a lot of the negative things that we have aren't because we're autistic, but it's because we're traumatized or because we have had problems. So I'll just give one example, one very small example is the, the idea of like we're not sociable and that we don't like being around people. And I'm thinking, well I've, I've been burnt by so many people. I've been hurt by so many people. I was so badly bullied not only at school but by my, by my own mother. I can't trust people. So that unpredictability of being around people, that's what stops me wanting to be around people. That's what makes me nervous when I go to a new place. That's what makes me worried about going into a restaurant. Not, it's not just the hypersensitivity of the noise and things, but it's the amount of people and the amount of people around me. Isn't, that's not a problem because I'm autistic. That's a problem because of the way I was treated because I'm autistic.

[B]

There's trust situations there as well. Isn't that because I think lots and lots of the PNT say things to each other that are acceptable and it's, and it's legitimate and valid and perfectly okay. And you'll see it, you observe it. It's like, yeah, I'll see you at seven o'. Clock. Well you, you're not there at seven o', clock, you're there at half past seven. And both parties are fine with that. It's not, it's not seen by one person saying we agreed to meet at 7 o'. Clock. You've lied to me. I therefore don't trust you anymore. So the next time I link up with you, I'm going to be more anxious because I don't actually know whether we are meeting at seven or half seven or somewhere in between. And those again going back to microaggressions, those chipping away of trust that then leads to situations where I might withdraw from the situation. You observe me being non sociable. The reality is I just don't trust the situation anymore. And they're two completely different things. Again, it goes back to the meaning behind what's occurring rather than what other people observe. Well, it's interesting actually because you've, Jordan, you've used word advocate a lot and that's gorgeous. Advocacy is amazing. I don't think you've ever said you represent autistic people.

[C]

No.

[B]

And I think that's often the accusation that advocates people who try to push the boundaries and say, look, you know, we're striving for this. And then other people say, well, you're not representative of me. It's like, I don't think anybody ever said that they want.

[C]

I often have both. So I will say I have a lot of positive people saying thank you for speaking on behalf of us. And I'm like, that's not what I'm doing. I'm speaking on behalf of myself and my family, who I have permission to speak on behalf of, because I've asked that permission, which is very important, by the way. So that's who I'm speaking about and for. But if somebody relates to the things that I'm saying and says that, you know, you just put that in a way that I could never do that. And I think that's what you liked about me. If, I mean, correct me if I'm wrong, but you like the way that I was able to describe things and succinctly put things to sort of help neurotypicals see the world from our perspective. And I always go back to how I describe meltdowns because I know you particularly like that one. So yeah, 100%. I also get you don't, you know, you don't represent all autistic people. You know, you, I literally had it yesterday. Oh, you know, I really like what you do, but you have to admit that you're only speaking on behalf of the higher functioning autistic people. And I was like, no, I'm just speaking for me. And it has nothing to do with my level of functioning, by the way, which changes moment to moment. And I think that language is horrific anyway. But also, are they suggesting that like somebody who is non speaking or somebody that doesn't socially interact as much as I do, doesn't have any of the same experiences that I do? Are they suggesting that me putting a post out about having sensory issues with food and textures, they're not going to relate to that?

[B]

It.

[C]

Only high functioning people have problems with. No, it's rubbish. We're autistic. We often have very, very shared problems and positive experiences of being autistic. And it has nothing to do with, you know, how you may appear from the outset. And I think that that is also a problem because this guy worked or works with autistic people and he was saying, oh, the kids I work with, you know, they'll never live a life like you. And I'm like, wow, you've You've just put a lid on their potential straight away. You just assuming that they can't do anything.

[B]

I'll think of three things today because I always like things in threes. But firstly, any professional, and I know I shouldn't dictate to professionals, and I'm sure a lot of you do a wonderful job, but nobody's got a crystal ball. I don't think, I don't think anybody should ever say to a parent or to an individual, this is what autism is going to mean to you in the future. Because you don't know. Hundred and I know far too many adults who were written off as kids and were told by professionals, oh, you'll never gain a qualification, you'll never get a job, you'll never get married, your child will never read whatever it might be that has turned out to be completely untrue. And it's so unfair to suggest that to parents. The second thing I wanted to say because it goes back to you when Jordan, when you were saying, I feel really bad, Simon, we are going to come to you. This is a problem with getting me and Jordan together. It's like, it's just ridiculous. Anyway, there's me at the beginning going, I don't know if we'll have enough to talk about. I always, I always do that when I go to two talks. I always think, I don't think I'll have enough to talk about and I end up doing one slide out of about 99. But when people say, oh, do you, do you think, or how do I know whether I'm autistic or not? And I've made this suggestion a few times. I've had some really positive feedback about it. Pretend that you are slip on your autism onesie, metaphorically, put on your autism hat, put on your autism coat, snuggle into your autism duvet, go into your autism bed, whatever. Just think to yourself, I am 100% definitely autistic, and then see how it feels. It's such a cool thing to do. Or if you think, I wonder if my child might be autistic, assume that they are and then see if it makes sense. Just try and understand your own life or your child's life through that autism lens and see whether it fits. And I'm not saying that's your answer, but it takes you a long way further than constantly going, oh, this diagnostic criteria, that autistic person, whatever. Thirdly, because I just like things in threes. I like the giraffes behind you, Jordan, very good.

[C]

Well, I can't see them as long as you.

[B]

As long as you compliment me on my Moomins.

[C]

I'm literally blind. I was obsessed with Moomins, Moomins and the Clanks when I was a kid.

[B]

Moomin pictures.

[A]

Oh, I can see them now. Very nice.

[B]

Anyway, Simon, we were talking about people who suggest that your kind of autism doesn't relate to anybody else's, if that makes sense. Yeah.

[A]

I would find that a really bizarre statement to kind of hear from somebody. I'm kind of lucky that I haven't up to this point, but I would be amazed if anybody could say what sort of autistic I am, because I don't know what autistic I am. It makes me think of the iceberg theory. I only show a very small percentage of myself to most people, and I'll be honest, because of how much I have masked throughout my life trying not to be neurodivergent and myself. There is a lot of myself I have yet to discover. I find that I am very similar to a lot of autistic people or neurodivergent people that I've met. Jordan and I have so much in common and are so similar, not only in our experiences, but how we react to things and the things that we're interested in. We have an awful amount in common. And I will say, when looking at other autistic people, yeah, there are certain elements to me that I don't struggle with, but then there are things that I find extremely difficult. And again, a lot of it is down to my environment and what I have to do rather than what I'm good at. I find a lot of the time things in life don't always play to my strengths. It normally leans towards my weaknesses, and yet my strengths are on. Picked up upon. I think it could do a lot of harm to a lot of people. You could really stunt a lot of people's potential. A lot of the time people I find stare at me going, always doing nothing. When really what I'm doing is thinking, which is super important to think about how things work. And that is my strong point. But because a lot of people can't really see what's going on. Again, talking about the iceberg, A lot of the time I feel like I get devalued and put in a box of, you know, oh, he's autistic. Not really wanting to understand more than just that label.

[B]

It's really interesting what you're saying then. All of it was interesting, actually. But, like the iceberg thing, what what you don't see combined with the masking and going back to what I was saying earlier, almost flippantly, language matters, I think I don't mean it flippantly at all. Goes back to what Jordan's saying, like, one word can make. One word can save a life, like 100%. I'm getting more and more interested in conceptual language in terms of what language means to you as an individual as opposed to what language might mean to somebody else, and then the mismatch between the two. So I always use the. The argument of Wittgenstein's Lion. So Wittgenstein saying, if a lion could speak in this example English, and we were had to have Mr. Or Mrs. Or they lion on this podcast, we still wouldn't be able to communicate effectively, even though we're all speaking the same language, because our frame of reference is so different that the meaning of the language that lion is using differs compared to the three of us. So I think if you analogize that. So go to a real life example for me anyway, rightly or wrongly, and I'm quite prepared to be demonstrated in correct in this. But my understanding is, Simon, you were talking about masking. I've taught about masking and my students have taught me loads about masking. This, okay, this is a real life example, so I can't be accused of making this up. Real life example, talking about masking to school, inset day at school. And so many of the teachers either there and then or during the break, come up to me and said, well, I appreciate what you're saying about autistic people masking, but we all do that. So going back to what you were saying, Simon, in terms of, yeah, but, you know, everybody has a mask, which is not exactly the same as saying everybody masks in the same way that I'm talking about. So I'm not saying you're wrong in the slightest. Not at all. Going back to these teachers who were not autistic, and I would agree everybody does mask some of the time. But does that mean that there's synonymity between PNT's understanding of masking and the experience of autistic masking? That's where I would say Wittgenstein's lying. So I went back to these teachers and I asked them three questions. One, when you're masking, are you consciously aware that you're doing it while you're actually doing it, or is it just a sort of natural part of what you're doing? Secondly, does it take an enormous amount of your energy to do it. And thirdly, behind the scenes, after you've come out of that environment, do you need to recover? Do you literally just sat in a corner or in bed? You can't eat, you can't talk, you need time on your own to recover from that experience. And the answer invariably in that situation was no, no and no. I then went back and asked autistic people those questions and the answer was yes, yes and yes. You're using exactly the same word, but the experience is totally different. That really worries me. That taught me such a big lesson. So when you go to the doctor saying, I think I might be autistic, and the doctor says, are you sociable? And you go, yes, I'm extremely sociable. And the doctor goes, well, you can't be autistic. The doctor's understanding of sociability and your understanding of sociability might be completely different.

[C]

I think that's the same for most parts of being autistic, which is why I think I end up just with exclusively neurodivergent friends. Because when I am having a difficult moment, even when I'm able to explain it and advocate for myself in the way that I can do, which, let's be honest, a lot of autistic people can't. Alexithymia. Non, non speaking. And. Or maybe they just don't know how, you know, with their own feelings, they don't understand their own emotions. I feel very fortunate that I can speak about those moments, but so often the person, they just don't get it. No neurotypical is going to ever understand that. And I have absolutely heard it. Oh, yeah, but, you know, we all don't like the smell, you know, or we all don't like that sound and it's like, right, but then what? You've just experienced times that by 10 and then you're close to how it feels. For me, I only use times it by 10 because I don't know how, how they experience because I'm not neurotypical. But I know that if a neurotypical is like, oh, that's really loud, they'll be like, oh, that's really loud. And I know that if I go, that's really loud, I go, oh my God, that's so loud. Oh, I can't. Oh, I can't take it. Oh, it's too late, it's too loud, it's too loud, it's too loud. And I will feel sick. I will need to, to get away. I have to, I have to stick my fingers in my ears to. To get out any sound possible. All I can say is I've not seen a neurotypical experience, the exact same thing as me in that way. And that, that I think is. It's just frustrating.

[B]

That's. It's absolutely spot on. It works both ways. One of the reasons why I absolutely adore the whole sensory world of autism and how you engage with understanding your own reality. That's why I'm interested in Simon being recently identified. Because then you if. And I've done this with so many people who have been kind enough to share their lives with me, it's like, actually, how do you know what you don't know? How do you know it's like being colorblind? How do you know you're colorblind? Because you don't know what anybody else is saying. How do you know that your sensory world is any different to anybody until you start investigating it? And as an adult, that's. That. That blows people's minds. It's like, what, you mean other people can't hear electricity? What are you on about? I just assumed that everybody could tell when the, you know, when three doors down, some did the next door, but next door. But next door one's neighbor would put their television on and it does your head in. Did. Is that not the same for everyone? It's kind of like, actually, no, it's not. And I love that journey of discovery. But it's also quite dangerous going back to your own lived experience and what going back to fiction. Signs lying really, in terms of parlance. So I did a series of videos for healthcare workers, GPs, and one of the things that I feel really passionate about is language that tries to identify if you've got a health problem. But if your interpretation of the question and your understanding of your own experience is qualitatively different to the meaning behind the question in the first place, or what the doctor is actually asking, there's going to be misinformation. So pain being the obvious one. So often GPs will say, won't they? On a scale of 1 to 10, how much pain are you in? Lots of autistic people are massively imaginative and straight away you can almost see them thinking, well, you know, if my skin was peeled off and then I was dipped in acid and then chucked in a volcano, et cetera, et cetera, that's 10. I'm never going to be more than a three, however bad the pain is compared to what it could be. Whereas if the GP turned it around and said, does the Pain stop you from sleeping at night. That's a qualitative answer that you can give that all of a sudden you're on the same communicative pathway. If the doctor says, how many times, literally how many times during the night do you wake up because you are in pain? That's a definitive answer that the autistic person can give and actually tells the doctor something far more cohesive and real than on a scale of 1 to 10, what level of pain are you in? And I think until we understand friction signs lion, and how communication can be misrepresented by using the same words, then autistic people, again, because they're in the minority group, are at risk of being at disadvantage.

[C]

Yeah, I mean, we literally. I've always said that I'm bilingual because I speak autistic and I speak neurotypical. That actually brings me back to a lot of people. They say, oh, yeah, you don't seem to have all the problems and you seem to be fine and all this nonsense. And it's like, well, actually, I think because I'm late diagnosed, because I've had to mask, I've had to fake it. It's not a natural language. To me, speaking neurotypical is like, you know, a foreign person having very broken English. And there's so much miscommunication when, when someone says something, it's not necessarily. It's going to sound the way they want it to sound. And that is just my life in general is that I've been like, oh, okay, it's fine for me to say these things. And then I say them and people go, oh, that's weird. Or that's freaky, or why would you say that? Or, you know, and I think that. So everyone says, oh, yeah, you know, yeah, you're, you're, you're fine. You can communicate, you can be sociable. And I'm like, right, yeah, okay, you have a conversation with me when I'm not masking. You will soon see what the difference is between being autistic and speaking and that communication style that we have, which varies between every single autistic person, by the way. We don't all speak the same language. None of us speak neurotypical. We have to learn that. We have to learn to fit in. It's not a natural thing for us. But when I'm around my neurodivergent friends, oh, it's like a weight has been lifted off my shoulder. When I have a conversation with Simon, it just flows. And I love, I enjoy every second of it, in fact, it goes on too long sometimes. And Sylvie's like, hello, I exist again.

[B]

You don't have to think this hard about it. Rhetorical question coming up. But how many non autistic people make a huge amount of effort at all sorts of costs in terms of energy and finance to go on courses, including mine, potentially to learn how to more effectively communicate with autistic people? And it takes an enormous amount of effort on their behalf to do so in a paid position. So you've got a teacher at school who has to put an enormous amount of energy into communicating with their autistic students. Autistic people have to do that for free all the time, not just with their own.

[C]

The honest is always on us to be the ones who have to make the compromises. It's always down to us. I mean, even. Even the training, the, the horrific ABA that is, like, ordained upon autistic people in the US and other countries, you are going to try and fit in with the neurotypicals because that makes their life easier. And it's like, well, hold on, what happened to equality through equity? At least meet me halfway, people. You know, I can't do all of this by myself. Because when you're trying to do everything by yourself, if you're putting all the effort and they're putting none of the effort, that's when I have serious mental health issues because it's so tiring. If somebody says, give me one word to describe the worst thing about being autistic. The worst thing. Talk about being positive all day long. What is the worst thing about being autistic? I say I am tired all the time. I'm just tired. And the worst thing is being tired. That means that I am. I have a tendency to have meltdowns. But if I have a day where I'm just like, oh, I'm just at home and I'm just doing my thing, and I'm equally as autistic as I was yesterday when I was at work or when I went to a gathering or I went, you know, into town even to do some shopping. I'm equally as autistic as I was then, as I am now. But today I'm not tired. I'm energized. I'm playing my video games, I'm hanging out with my friends. I'm enjoying myself, and I'm not tired. Well, I probably still am tired because I'm tired from the day before. But it takes so much time for me to recover. Even, I know, after we have finished this it's going to take me time to recover and this is something I enjoy doing.

[B]

I think we're missing a trick to a certain degree. This is fairly fresh in my memory because it's in the latest. It's a whole chapter in the latest book that came out last December. Well, it's all about my self professed golden equation. Autism plus environment equals outcome. What does environment actually mean? And breaking it down into a whole bunch of different things, including self. So self is part of the environment. So you can't, you know, you are part of the environment. And then breaking self down into nine different components of different types of energy. And it all sounds a bit sort of, I don't know, I don't know what it sounds like, but it is what it is. I'm really into. I love the concept of energy because it's very real. It is actually a real thing. Goes back to what you say something about battery. Everybody's got a certain amount of matches or certain amount of spoons and that will differ depending on the environment, so on and so forth. But how many of us actually work out on a whatever day to day basis, week by week, year by year, what type of energy is being used up by what type of situation? So doing a podcast with two other people, what is that social energy, is that physical energy, is that mental energy, is that emotional energy, is that sensory energy? So on and so forth. And actually compare that to next week when you do the same podcast with two different people again, what time? And actually charting. And I really encourage autistic people to do this and parents of autistic children or loved ones or whatever to do it with them. What type of energy is being used up with what type of situations? And not only what, what's taken up, what gives you energy as well. So you'll know. I can, I can. I've never met you before, so I guarantee, I can't guarantee, but I suspect very strongly and I know for a fact with Jordan that people will be energy drainers. But some people won't. Some people give you energy. What gives and what takes and what gives them what takes a different time today. So I'm into, well, same as you, Jordan, into exercise, physical. So I went out yesterday for two hours over two, it was two hours and 11 minutes. Went out for a run, my legs were tired. When I got back, I had an abundance of energy because it's different types of energy. So I had all sorts of mental energy because I was thinking about autism and writing my next book. So all of a sudden it's like, right, I need to get that written down. Whereas if I just laid down for two hours, I would have been physically drained because that doesn't give me energy and probably mentally drained as well. I suppose my point being is if we're not charting it, if we're not cognizant of, of, of this, then we're always going to be at risk of being in a negative spoon state, negative energy state, which is, as you both know, dangerous place to be. I've got to go, guys.

[A]

Don't worry. It's all good. But no. Thank you so much for talking to us today, Luke. It's been an absolute pleasure getting to know you and your knowledge is incredible and what you do is, is really wonderful. So thank you very much for joining us and I hope we get to chat to you again.

[C]

Yeah. Can we have you back, Luke?

[B]

Yeah, of course. See you later.

[A]

Thank you so much for joining us today, everybody. And thank you again to Dr. Luke Bearden for joining us. I know that I have, I really hope that you guys find some knowledge or a moment of reassurance from the conversations that we've had today. And if you've really enjoyed hearing it, this is the first time you're hearing this podcast. Please subscribe to us and leave a nice review if you really enjoyed it and go back and listen to all the other episodes that we've created as well. Thank you for joining us. Say goodbye to everybody, Jordan.

[C]

Goodbye to everybody, Jordan.

[A]

Oh, yeah. See you later, guys. Bye. Acast Powers the world's best podcasts. Here's a show that we recommend.

[B]

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[A]

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