D (3:23)

He's a cool guy.

C (3:24)

Yeah. But this, this, this, this is along the same bloody lines as, as the love on the spectrum.

D (3:31)

Yes.

C (3:31)

Like it's, it's just showing the most socially disabled version of autism, like, like the stereotype of the negative stereotype of autism, when the reality is that that is the minority of autistic people.

D (3:53)

One of the reasons as to why I like reading the Conversation is it's a collection of academic rigor and journalistic flair articles. And this is authored by a fellow from the University of Hertfordshire, a fellow from Swansea University and from Cardiff University. And these are people that are associate professors in public health and trust care development and also a PhD candidate in Access to healthcare for autistic adults, which I love. Thank you for that. So the article reads, autism charities are important organizations. They provide essential services for autistic people, influence policy decisions, and often speak on behalf of autistics. This means that how these charities write about autistic people may influence how society understands what it means to be autistic. The words and pictures that autism charities choose to use affect how autistic people are understood, perceived and cared for. This really matters, as autism is still often stigmatized. Our recent study shows, and they've actually linked. The study shows that the language and images large autism charities use mainly portray autistic people as a problem. In contrast, charities present themselves as a solution to this problem.

C (5:08)

Thing is, I don't. I mean, it's great that there's a study, but I don't think that's a particularly difficult study to do because all you've got to do is Google autism charities and you just cycle through it and it's puzzle pieces and, you know, incredibly disabled looking. Chill. It's always children. It's always bloody children. Like, like autistic adults don't even freaking exist unless they're charities for, for autistic adults. But then, like, I, I have been approached by many, many charities to do work from especially around Autism Week or Autism Month. I, I get approached every year by charities because, oh, can you do this with us? Or can you promote us or whatever. And I will always go straight into them and have a look and if I see a puzzle piece, I'm out. And I will tell them why I'm out. And, and we can get onto the whole puzzle piece thing another day, but just do some research. The puzzle piece is shitty. If it's, if it's personal to you, then that's cool. But if it's just something you've picked up because charities use it, not cool. Because originally it was all about how we are a puzzle. We are, we are a missing piece or we are missing a piece. Like, we're not quite all that. It's, it's, it's. We are not, we are not good, we are bad. That's what it stigmatizes. That started with the nas. Now their, their badges changed and then Autism Speaks picked up on that shit. But it's, it's still the same thing. It's still this. Oh, and it's the same with every charity, I feel, because charities want your money. So if a charity was like, oh, here are Jordan and Simon. Please give us money to help Jordan and Simon. They're like, well, isn't Jordan like a manager at his job? Isn't Simon self employed podcast guru? You know, and it's like, I don't, I mean, I don't need charity. I don't claim benefits. I work. I, I don't, it's not for me. There are so many autistic people that do really need help. Mostly young autistic people, I welcome that. But so many older autistic people and autistic parents of autistic children, there's so many people that need help, that do act like us, that are very similar to us. And I, and I'm like, well, do they not need representing within these charities? Or are these charities only set up to hope to help the most disabled autistic children? Because that, that's wrong. Like, that shouldn't be like that. It should be to help all neurodivergent people in general. I mean, there are some great ones that don't do that. I know that my friend in particular, the autistic teacher, she, she runs a charity over in Kent and it's, it's a great charity. I wish I knew the name of it. I'm so sorry. But go on her Facebook page. The autistic teacher, she's amazing. She's been on this podcast. Absolutely amazing. And I think that that's the key, and I think we've said this before, is that autistic charities should be autistic led.

D (8:40)

Oh, nothing about us, without us. That's sort of where I fall in this. So just going back to this article, it states, we used critical autism studies which seek to question stereotypes and view autism as a difference rather than a disorder, and as an approach to evaluate and explain the reports and suggest how things could be improved. We found the people doing the study that autistic people are largely portrayed as problems, as challenging and as a burden. They're frequently depicted as being needy and infantile. And every single charity depicts autistic people as needing to change. Autistic people, they say, should be more communicative or resilient. And the article says, we think that the. The use of this kind of language and imagery has negative consequences. Put me teeth in. Has negative consequences for wider societal attitudes towards autistic people. In contrast, these documents, charities who do not appear to be led by autistic people represent themselves as experts with the authority to act for and to speak on behalf of autistic people. This links to an overwhelming message in the reports that these charities need to be able to do more, to be bigger and often better known, and that they need more funding to enable them to achieve their goals.

C (10:00)

Yeah, they want cash. The words nonprofit pissed me off so much because I remember when I first became an advocate, a lady approached me about starting our own charity. She had run charities in the past and she approached me about starting up a charity and I was like, right, but I got a full time job so I can't work for free. And she's like, we don't work for free. And I'm like, but it's called charity. Like, I was really naive because I genuinely, I've never really looked into it because of the very autistic brain that I have of, like, unless it interests me, I'm not interested in it. Like, I can name like all the different atoms, but I can't, I can't tell you about charities because I don't care.

D (10:50)

Yeah.

C (10:51)

And she's like, oh, no, no, well, we'll make plenty of money. And I was like, how? And she goes, well, I mean, it's non profit, but we, we get a wage. And I'm like, where do we get the wage from? She's like, well, it's from the profit. And I'm like, so it's not non profit? And she's like, well, no, we don't make no profit. We have to make some profit to then pay us a wage. And I'm like, so it's profit then? If you're getting paid to do it, it's profit Now. I don't have a problem with people who run charities getting paid to run a charity, as long as they take a fair wage and give out a good amount of money and do what they are supposed to do, which a lot of them don't. A lot of them are more interested in the money than they are helping people. But don't call it nonprofit because it's fucking profit. You're making profit. You're making a living wage. And this. This woman seemed very excited that we were all going to somehow be very, very wealthy running it. And I was like, gross. You sound like my fucking birth mother. I'm not interested. I'm not taking advantage of people for loads of cash. Just disgusting. But that sent me on a huge deep dive, dude. Of now I am. I am more confident talking about charities and the misuse of the imagery and the way that we are portrayed within those charities than I am talking about atoms. Like, it's switched. I know so much because I nearly got sucked into it. And I have a lot of charities contact me, and I'm very, very picky of who I work with. And there are some great autism charities out there.

B (12:35)

We.

C (12:36)

Me and you have worked with them. We did the live.

D (12:42)

Yeah, we did, yeah.

C (12:43)

Autistic mind. They were fantastic. They really were. Unfortunately, they've now closed down because they didn't have enough money to carry on because they weren't making a mint and they didn't portray. I mean, I'll be honest, there was a little bit of portrayal that wasn't the best, but to be fair, they helped so many people, but they represented us, they put us. And they had Angela, who is your boss now, from the. Or from the Autistic Culture podcast. They had Angela there. That's how we all met. And it. It's very, very positive. They were great charity, and they don't exist anymore where there's so many nefarious ones out there that are just so interested in your money. And when I go onto the National Autistic Society website, if you give them any of your details, and this has been told to me, but this has also happened to me, if you give them any of your details, they will hound you for donations. They will hound you for donations. And one of the biggest things that keeps popping up when you go on their website, it's in the corner, it's everywhere. Donate, donate, donate. In my opinion, I think the only thing that most of these charities care about is money. They don't actually care about what they're doing or who they're representing. I'm sure there are many, many people within those charities that absolutely do. There's people, no doubt, and I think that most of them are probably volunteers who don't get any money. And that's why they care, because they're doing it, because they care, not because they're making money, but the people at the top, the people running these businesses.

D (14:25)

Are there any autistics on the board? Good question.

C (14:28)

I very, very much doubt it. Or if they are, they're prob. Just in place. What's the word? Tokens.

D (14:36)

Tokenism.

C (14:36)

There's just tokenism. But yeah, should we have a break before I fully explode and yeah, we'll.

D (14:44)

Let you cool off and we'll come back. We'll be right back, folks.

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D (15:45)

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 you don't have to wait years. RTN Diagnostics is now part of the NHS Right to Choose scheme, which means if your local wait 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 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 weight. Welcome back to this week's Hot Topic. We've been discussing He's a Steamy boy. We've been discussing autism charities and how they portray autistic people as helpless and as a burden. And we're reading an article that's related to a study that shows why this matters and it said something here which I think I just want your take on it. It's quote, the quote. This seems to reflect the, the overall behavior of we need to improve things. We need money to, to, to help these helpless, burdened people and to fix them. It reflects the non disabled savior trope that has become found to be common in popular culture. This trope highlights the action, even heroism, of non disabled people, saving disabled people rather than centering disabled people's agency. All of these charities describe themselves as being funded by government. Alongside this, however, government is primarily portrayed as a barrier to the effective provision of services for autistic people. So government funding and policy decisions are described as arbitrary and inconsistent. It suggests a government at both local and national level that is ineffective and unreliable. So this is coming from these charities that are saying, no, the government's not helping you. This is why we're here, mate.

C (18:42)

It all comes down to the $$ bill, y'.

D (18:45)

All.

C (18:46)

It. I, I don't, I mean, there are some great people out there. I'm never gonna not say that. And I've met so many wonderful people working with great charities. But the bigger they are, the more known they are, the more nefarious they are, from what I can see and from what I'm told constantly.

D (19:09)

Because from my experience, like we've met autistic minds and I spoke to somebody from Audi HD UK the other day and the National Autistic Society is almost like the autistic charity mafia in a way.

C (19:23)

Oh yeah.

D (19:24)

Like they seem to close a lot of people down.

C (19:27)

That's what I keep hearing. They, they, they are the monopoly and they take over areas, is what I have heard. I do not have proof of that. I make that very clear. But the sources that I get that from, I Trust very, very highly that they will push people out of areas of just saying, no, we teach here. But even if that's not the case, they. They push people out of areas simply based on the fact that people know who the National Autistic Society are and take them more seriously. Based on the fact that they have celebrity status.

D (20:06)

Yes.

C (20:07)

And they even use celebrities in order to gain a higher reputation, but they don't earn that reputation. They just. People know who they are because it's on telly or because people wear T shirts. I've seen Chris Packham wear them. I've seen. I've seen Christine McGinnis. Now, she's, you know, separated, but I've seen her wearing one, the T shirt. I've even seen Greg Davis. And I love Greg Davis. I love Chris.

D (20:40)

I love Taskmaster. Great show.

C (20:42)

Yeah. I've seen there's lots of celebrities. I don't dislike the celebrity just because I see them wear an NASDAQ T shirt. No, I just think they're. They're misinformed. They're misled. Because the fact is, just because you're a celebrity doesn't mean that you know about autism and you know about charities. It just means that you're trying to do a good thing, you're trying to be a good person. And that's the point, is that the nas or any other big charity, they have such a monopoly that it's like, they don't have to be good. They. They just. They just exist. They just exist. And they exist, in my opinion, and in the opinion, apparently, according to a lot of people, they exist to make money. They are a business.

D (21:24)

This is the thing that I always think about, like, with charities, right? And this doesn't just have to be like the nas, it can be related to, like, most charities. And this is just my opinion. I'm not trying to have defamation of any charities at all. But a charity doesn't exist if there's nobody to help. And I often think that by them pushing this sort of propaganda that we're all broken. We're all burdens. Oh, I'm so sorry that this disease has taken your beautiful child away from you. Which we all see. We all read. We read and see more of this than. Than anything else. And a charity is going to be profitable if everybody thinks that, because then they are going to get loads of donations to not help people, because if they help people, that's money. There's less money around, there's less people seeking help. If there's more information out there. If there's better education, if there's, you know, not a Secretary of Health that's, you know, brain worms taken over. So all of this feeds the machine. You need items on the conveyor belt to sell a product and their product is we help people. Give us your fucking money.

C (22:30)

Yeah, it's the same. I remember seeing it with like a charity that was supposed to help kids in Africa. And what I love about these charities is that Africa is a continent and they don't specify like what part of Africa, but let's assume that there's a charity out there that's like, oh, we're going to help Ethiopian people have access to clean water. Right? This is. And, and I've, I've seen so many documentaries that have actually done that exact thing. And, and it, it's all, it's all a facade, like it's all just for show. So there's the PR side of it, right? It's just like they look good, they look good. And then people might buy a product from a company. I'm not talking about a charity, I'm talking about like a company. The company says, oh, 10p of every pound of this product that you buy goes towards like clean water for an Ethiopian town or village. And it's bollocks when you, when people actually like investigate and look into it, they just find it's bollocks. And the same goes for a lot of these charities is that I remember hearing like, for every pound that you give to like some of these charities, I'm not going to inside naming charities but the big charities, for every pound you give, maybe 10p actually gets out to the person it needs. So the 90% of it is already gone for this alleged in, in quotes, non profit.

D (24:07)

And to add to that as well, I used to go to university with a guy, I actually fell out with him over this and he went to build a school in Africa. And when I asked him why he was doing it, he didn't go, well, I'm very passionate about helping people. He responded with, it will look great on my CV100.

C (24:25)

Yeah, it will look really.

D (24:26)

And I was like, that's just fucking white saviorism. Like that's not a reason to go and help somebody because it's going to benefit you in the long run. That's fucking colonialism. That's fucked up. And yeah, we had a big falling out about it.

C (24:38)

Yeah, there is a lot of neurotypical savior complex going on out there of this. Oh, we did this nice thing. It's, it's back to that thing that I was saying in the imposter syndrome episode. Do people buy my pictures because they think that they're helping out the autistic person or people buy my pictures because they think that they're helping out the artist? Yes, because being an artist, trying to make money as an artist, you know.

D (25:08)

As a photographer, it's a lot of fun.

C (25:10)

It's very, very difficult. It's not, it's not an easy thing. And I definitely had aspirations when I, when I first started doing photography of not working in security and doing photography full time. Now those are still my aspirations for the future. Me. Mortgage paid off, kids moved out, no more dogs and, you know, debt free and all that. Then I might be able to start thinking about living as a photographer. But, but the reality of it is, is that it's hard. It's really hard. And it's like, well, the people buy my work because I'm autistic or people buying my work because I'm.

D (25:46)

It feels so ingenuine, doesn't it? It doesn't, it doesn't feel.

C (25:50)

Yeah. I mean nowadays, I know it's because of my photography, but, but there is, there is that, that savior complex of, oh, we did a good thing and, and everyone's, everyone's done it. Like, like I've, I've given food to homeless people on the street.

D (26:08)

Yes.

C (26:08)

I've gone and bought them food and drink. I've bought them shoes. I've bought shoes for homeless people. I don't put that on Facebook. I mean, I know I'm talking about it now, but that's because those videos.

D (26:19)

Where it's like, oh, film a homeless person and giving it like.

C (26:26)

Fake. Those are fake. I mean, I know I'm mentioning it now, but that's just because of the context of the conversation. But I'm not going to go into it. It's like I do those things because I do those things. But yeah, I definitely feel good about doing those things, but I don't need to advertise it. I don't need to like put it all over social media, which I could quite easily do. But like, it just feels really gross.

D (26:49)

So this article finishes with what should change? And it says, we hope our findings encourage autism charities to reflect on how they describe the people they exist to support. Words and imagery should convey the reality of autistic lives rather than leaning on outdated notions of pity or burden. That starts with meaningful autistic representation at every level of charity leadership, including decision making roles. Representation shouldn't be tokenistic, it should shape how organisations operate and communicate. Charities and governments need to rethink the current system of service provision and funding, which often leads charities overstretched and autistic people underserved. Most of all, we hope our research helps to contribute to a society that recognises autistic people not as a problem to be solved, but as people to be valued and understood on their own terms.

C (27:45)

Brilliant. I mean, that's. That, that, that is what we need.

D (27:50)

Yeah, I'm. It's gives me hope reading stuff like this. It really does. It really, really does. And I'm gonna link this article in the show notes below if you want to read it for yourself. There is a study in there. God forbid they've tagged the study the reference in Jordan. So it's lots of details, lots of words, pie charts and graphics. If that's your thing, all power to you. It will be in the article in the. In the show notes below.

C (28:14)

Yeah, sorry guys, but I have actually just remembered my friend's charity. I'm so amazing. I remember these things right at the end. It's Autism Southeast. So if you want to know a charity to support that we support, that we recommend is Autism Southeast and other charities like that, the autism led local charities. Those are the charities you want to donate to. Those are the charities you want to try to go to for help. Autistic led charities that, that's what we recommend here at the neurodivergent Experience podcast.

D (28:55)

Absolutely nothing about us without us. Well, this is, this has given me hope, dude. I, I like reading things like this where people aren't finding some form of drug or vaccine or, you know, Twiglet that gives you autism. They're actually discussing how best to serve us, accommodate us and to bring us conversation rather than being talked over and about. More power to. To these people, honestly. Well, that has been your hot topic for this week. I think it's been a great sort of debate conversations these, these two episodes that we've brought to you. But we will be back next Thursday with your regular programming with a hot topic following on a Friday. And of course, please don't forget to tune in to Mindful Mondays with Ashley Bentley. Start your week right with purpose. Thank you so much for being with us. Thanks, John. I will see you then.

C (29:44)

Dude, I'm coming around your house soon.

D (29:46)

Oh yeah, you are. I totally forgot by the time that these people will. Will it be this one that they'll listen to? The one after. We'll not let them in on the magic but yes, Jordan's coming up to Liverpool to see me and he's going to be using his brand new car to get here, aren't you love?

C (29:58)

I'm gonna go on a Beatles tour. She loves me.

D (30:02)

Yeah.

C (30:02)

Anyway, who's your favorite Beetle Scarab?

D (30:06)

Brilliant. Bye everybody.

C (30:09)

Nightly bar.

D (30:10)

My favorite one's the SW Scarab. What do you think? Paul? Thanks for tuning in to the neurodivergent Experience. We hope today's episode sparks something for you. Whether it's a new idea, a bit of validation, or just a moment of connection, Remember, new episodes are every week, so be sure to join us for the next one for more conversation and insights into the neurodivergent Experience. If you've enjoyed this podcast, help us grow. You can do that by rating and reviewing this show. Your support makes a huge difference in helping us reach more people who could benefit from these conversations. You can connect with us on social media, find us on Instagram, Facebook, Tick Tock. Just search for the neurodivergent Experience. Thank you again for listening and until next time, take care of yourself. You're not alone in this journey.

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