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Hot Topic hello and welcome to the Neurospicy news Hot topic.
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It's the news. It's hot. It's spicy. Direct to you.
B
It's getting colder though.
A
It is, it is getting. There's a, there's a bit of a chill. It's the chilly news now, I guess it's technically still hot. Is that a thing?
B
Yeah, it's like I, I was, it's like, it's like Nando's hot, which to me is just not that hot. I mean, like even the extra hot in Nando's, I'm like, nah, whatever.
A
All right, big bum.
B
Yeah.
A
Is this like your lemon and herb news? Is it today?
B
Yeah, yeah, my lemon and no, this is my, my extra hot.
A
The black bottle.
B
I, I bought that today and I'm just like, I'll just, I could drink that. That. That's it. But there is. I don't know how, with how we're going there.
A
But this isn't the news, by the way.
B
This is not the news. There is a bottle of this really, really hot sauce and I put a little bit on my chips the other day and it burnt my mouth to smithereens. So I guess, I guess there are some things that scare me when it comes to being hot. But the hot topic is okay, okay, this, not this. Okay, this is a little bit worrying, but going along the lines of everything that's been happening lately and what we were saying about, you know, not tarring every autistic person with the same brush as, you know, so many people are doing at the moment. There is a group. And I've heard this a lot, by the way. I've heard this on my page, like people commenting things like that, that want to have a different label or a different diagnosis for the. According to the CDC, the 26.7% of diagnosed autistic people, and that's in the United States, who have severe learning or severe learning disabilities or severe communication disabilities, severe impairments, in general, they call it severe autism. We do not. I think being severely autistic is going around collecting 1,000 bandages on dying light just so I can fight a boss and make sure that I have enough things to heal myself. That's my severe.
A
That's about as severe as it gets.
B
It's that. It's that, you know, hyper focus, not coming off the path. Just I have to finish this. I have to do this.
A
And you're trapped in the flow state.
B
Yeah, yeah. It depends how you define autism to then say something severely autistic. So. So the issue is that we have discussed many times, if you think that autism is this terrible, awful, evil thing that damages a human, that it's only bad, only a catastrophe, then you will use the word severe autism because it's severely bad. So I don't blame them for thinking this way. I don't blame them because they don't understand. But yeah, Scott, if you want to read the article for our listeners so they can and get a taste of what it is.
A
Yeah. And this is hot off the press for us, definitely. We always meet up before the show and look through articles or discuss topics that kind of come up in the news. And this is like a few hours old as of time of recording, so it's as hot as it can possibly get. Oh, feel it. It's warm. Feel that. Straight out of the oven. So the article is from the New York Times. So it's not exactly like it's a small publication here. And the article is, should the autism spectrum be split apart? Families of people with quote, unquote severe autism. What the article states say the repeated expansion of the diagnosis pushed them to the sidelines. A new focus on the disorder has opened the way for them to argue their case. So the article covers Jody Singer. And as a child, she barely spoke. She could repeat words that people said to her or recite the book Madeline from beginning to end, but she could not answer yes or no when her mother asked if she wanted juice. Sometimes she hurt herself compulsively, tearing at her skin and her hair on the nape of her neck. She would throw tantrums, thrashing and refusing to be comforted. When she was almost three, Jody was given a diagnosis of autism. Now 28, she still speaks only in short, repetitive phrases and requires round the clock care, including help eating, getting dressed, and using the toilet. At the time of Jody's diagnosis was made, the definition of autism was expanding as it would continue to do so over the next 25 years. And I promise will continue to do so. Once primarily limited to severely disabled people, autism began to be viewed as a spectrum that included far less impaired children and adults. Along the way, it also became an identity embraced by college graduates and even by some of the world's most successful people. Like just people. The broadening of the diagnosis autism experts believe, along with the increasing awareness of the disorder, is largely responsible for the steep rise in autism cases that Health Secretary RFK Jr. Has called an epidemic is attributed to theories of casualties that mainstream scientists reject, like vaccines and everything else that he spells. And the diagnostic expansion has now become a flashpoint and a long running debate over how autism should be defined. One that has defined parents and activists, igniting social media battles and grown fiercer with Mr. Kennedy's laser focus on autism. Now, what do you think to that, Jordan?
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Well, I see, I'm, I'm, I can see why, like I said, these parents of these civilian paired children are feeling sort of forgotten about in, in, in a sense because it's because they're a minority within a minority. So they used to be the majority. So like they said, it was, it was mostly severely impaired children. That would be like, okay, that's autism.
A
Your nan's idea of what autism used to be.
B
Exactly.
A
Yeah.
B
And the, the other side of it was Asperger's. And since they, since they sort of took away the Asperger's diagnosis, which is technically what I was diagnosed, Autism spectrum disorder, in brackets, Asperger's.
A
So many of the people when you were diagnosed were, I know many people that were given an Asperger's diagnosis.
B
I'm in brackets Asperger's. And it certainly made sense to do that. Now, Asperger's. We've spoken to Steve Svelman about this. You know, there is a lot of controversy, some of it justified, some of it not. But it's kind of irrelevant at this point because what the article is saying about the identity, that we use it as an identity now, I'll be honest, and I, and I know it's the same for you. We don't go out and go, oh, hi, I'm Jordan, I'm autistic. If I, if I'm explaining myself to someone, why I'm a little bit different, I just, I'm neurodivergent. And then if somebody is, you know, informed enough, one, they'll know what that means and they'll ask me the question of, if they, if, if it's that sort of conversation, they'll say, you know, how are you neurodivergent yeah. And then it's up to me to have the talk about it. I mean, I am the autistic photographer, so I'm going to die on the hill of the fact that, yes, I am autistic. I use it as an identity. I use it as I'm flying my flag for advocacy, for acceptance, for joy and wonderfulness, but also for the realities that it is hard being autistic at this point. I don't want to get rid of anything saying autistic. I don't want them continuously saying autism bad, it's the worst. I certainly don't like the word severe autism. Like I said, severely autistic means super hyper focused because that's what being autistic means to me. So it's a different, a different one for something, everybody. But I, I want to help these people, even if they are a minority. And, and, and let me be clear. And, and, and then I, I want, I want to hear your opinion on it. When the CDC and this is official stats, 26.7% are severely impaired according to their stats. But if you look at how many people are undiagnosed, which is a huge amount of people, and they're undiagnosed because they're not severely impaired. Severely impaired people will very rarely go undiagnosed by the time they're eight years.
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Old, whereas the majority of us go undiagnosed our entire lives.
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Exactly.
A
Yeah.
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But the fact is, if every single human that could reach an autism criteria diagnosis was diagnosed, that 26.7% would be far, far less. But that doesn't mean that those people should be forgotten about. Even if it was 2% of the autistic population, that is 2% of people that we will not, I will not forget about because that includes my best friend's son. That includes some of my very good friends, like brothers and sisters, that includes people I know and I won't let them be forgotten. I also won't allow people to use people like that to then say we're all bad, it's all terrible. Autism is the worst because that's not doing them any favors. And it's not doing us any favors.
A
No, it's not. No. It's making sort of standing out in this crowd of the spectrum even harder. And I find a lot of people, you know, I do it when somebody asks me, oh, I will tell people I'm neurodivergent because it sort of gives everyone a bit of a heads up of who I am and it gives me the opportunity to feel comfortable enough to unmask. And it's, it's a heads up for everybody. But I am not inclined to tell people that I'm autistic simply because I do not have the energy to have the conversation that follows with that. With the majority of people, I just don't. And I find if I tell somebody that I'm adhd, easy, it's easy, it's, it's expected.
B
Yeah, that's fine.
A
But the thing that sort of frustrates me is like what they're kind of doing is this whole idea of going, oh, more people are being diagnosed every day. I'm like, well, yeah, if there's more cars on the road, there's going to be more car crashes. Like it, it's going to stand out. But the thing that sort of baffles me is that just there doesn't seem to almost be any conversation being happening. Any conversation that's happening that's allowing space for everybody. And that is, that comes down to the fact that people just aren't getting diagnosed. I mean, I'm such a highly masking person by nature because that has been the majority of my life. And the only reason that I got a diagnosis is because I self diagnosed and pursued it. But if I hadn't done, there is an entire, I bet I know maybe 10, 15, 20 people that never would have pursued a diagnosis if I hadn't have had one. So there is a severe knock on effect that is happening because people are being diagnosed and they go, oh, you completely break my stereotype of what I assumed autism was. I assumed it was my friend's son who, you know, is a Gestalt language processor and struggles with extreme sensitivities and does, doesn't, you know, suit public spaces. That is what a lot of people imagine it to be. But what I don't want to happen and I really don't want this to happen is people that, that are that way and are on that part of the spectrum. I don't want them to just be labeled with this is awful, this awful rhetoric of just sort of, you know, everything's wrong with you. It's absolutely terrible. Your child has been taken from you. And I really want people to be able to get the support and the recognition and the appreciation that they deserve.
B
I think the other thing, as I look at Jodie's story and my heart goes out to her at 28, just not being able to be the best version of herself or she is the best version of herself, but it doesn't match what other people would consider to be.
A
Because it's so different.
B
Exactly. I mean, who knows what's going on with her? But it's like if you don't match the neurotypical standard, then somehow you're suffering because of it. But my heart goes out to Jody as the three year old that was described, because I did those things.
A
Yeah, me too.
B
I. Yeah. And that's the thing. And I wonder, would I have been given a diagnosis of severe or. What they're actually saying is that this group, they said this is from the article. A major autism conference and in scientific journals, the group has proposed the creation of a separate category called profound autism for people with the most severe disabilities. Again with the word profound. And I mean, I'm not actually against, like, having a different category for these autistic people, but if it's needed, like, I'm not saying it's not needed. I'm just saying words matter. Words really matter. Like, right from the, right from the early stages of this podcast, we were speaking to Luke Bearden and, and we were all saying words matter. Like, like have autism too. I am autistic.
A
Oh, that is. Was a huge game changer for me with identifying. Absolutely huge. And one of the things that, like, comes from labels is it's like more understanding. We've discussed it of going, I wear clothes. Okay, but I have a T shirt. I have jogging bottoms. I have socks. I wear this size T shirt. I like this side of material. I don't like those tags. I like that type of button. It helps to sort of identify your needs and what is support. But the difficult thing that I find that comes with this, like, profound label is, yes, it raises more awareness, but it also creates an easier target, which is what I really don't want to happen.
B
It's. The problem with this also is, is that as soon as you use the word autism, whether it's severe, profound, mild, as soon as you, you say something, something autism, it's because it's so different for every single person. Jodie's story is Jodie's story now. Like, like, there's certain parts of Jodie's story. I'm sure if I read her whole story, there would be so many parts of it that'd be like, yeah, I'm, I absolutely did that thing and I absolutely can, can empathize and relate to so much of what she went through. It's, it's why this podcast is popular. It's why my page is popular, because people relate to the things That I.
A
Read it about things that she did at 3 years old, like compulsively picking its skin and the hair. Do all of that. Now when I have a meltdown, dude, I feel like a godamn wild animal.
B
Literally. I mean I, I bite myself. Like I did it yesterday. I have bruises on my arms from where I'm biting myself.
A
I've had a bruised knuckle for about a month where I was like so tense that I just pushed my knuckle into my hand so much. Yeah.
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So first of all you would have to say, okay, but so how do you define severe or more impaired? And you know, it's quite easy to do that when it comes to like how capable are they of just day to day living? Just day to day. But then you'd have people that might not be as impaired as Jodie, but they, they might also need, you know, not 24 hour care, but just someone to keep an eye on them. Because there's a lot of neurodivergent autistic people that are really bad with finances that yeah, they can't hold down a job, they have such severe anxiety.
A
But then so many neurotypical people have receptionists and accountants, which is the bit just winds me up because I genuinely, I, you know, we run this show, I run all the shows for other people. I have a full time job, I have a mortgage, I have a car, I have, I have all of the hallmarks of a quote unquote normal person. But you dig deeper. My partner helps me with so much, dude.
B
Oh yeah.
A
So, so much. And vice versa. Like we are codependent, we need each other.
B
Somebody said to me the other day on Facebook there was like, oh, it's all right for you, you can live independently. And I was like, like hell I can. But when Sylvia goes away, oh my God. Like honestly I'm, I, this place is not great. Like I am just really PDA with just ADHD and, and, and just being autistic in general of just being a big kid. Because that's how I define neurodivergence for me personally is just being a big kid having those weird abilities that, you know, little kids have, you know, infants have. And that brings me on to the whole point of this is if you, if you do split it, let's say you call it something completely different. Say you call it impaired brain functioning disorder. Right? Just for argument's sake, just making random things up and you don't give it the label of autism at all, you just call it this one thing what happens? Because these people will then be treated as if, oh, what, basically you are incapable of doing things for yourself. Well, what happens when the second round of synaptic pruning happens when they're in their teen years and then suddenly. And this has happened so many times and by the way, this is not fact, this is my hypothesis. This is very, very far from being a fact, but it is so glaringly obvious because this keeps happening, is that you'll have people that are diagnosed as being severely impaired and then in their teenage years they start making a quote unquote recovery. They'll start being more sociable, they'll get more social skills, they'll be able to start living by themselves. And, and, and like, or hater Temple Grandin is like the, the absolute perfect example of this. And, and there is, there is so many, if you read Steve Silverman's book, it's neurotribes. Like he will describe so many kids that are like, you know, given this label of severe or low functioning and suddenly they're actually able to live independently and get jobs when they're older. So that was the whole issue with the whole low functioning, high functioning. Because high functioning people are saying, we don't need any help. And low functioning people are saying, you can't do anything. Like RFK says, they won't even be able to play baseball or watch a baseball game or clean their teeth. And it's like you, you, you just don't know. That's the point is that if, if you just say what you are this thing because we told you, then you're, you're taking away that person's right to be who they're going to be.
A
Oh, you're capping their potential. Massive. Exactly. Like I can imagine when I was taken out of school around 6, 7 years old, I was moved to a. Because I just could not focus in a classroom of 40 kids. I am sure a teacher could have sat opposite my parents and gone, well, if you can't do this in a classroom, how is he going to hold down a job or a relationship or loads of things like that. And then as soon as I get a job and a girlfriend, oh, he's fine now, obviously. And I told myself this a lot of the time is like I was, I'm, I'm great at a lot of things but you know, I could like, at 6 years old I could tell you every single James Bond and all the films in order and what actors played them, but I couldn't tie my shoelaces and apparently that was a real bad thing, even though Velcro exists. And it amazes me how many people, sort of, if I had been given that label at 7 years old of we've taken him out of school, he's disruptive because he can't focus. Even though it was my environment, not me. If somebody had told me, this kid's not going to get a job, he's not going to have a relationship, he's never going to play sports, he's never going to do this, why would I even try any of those things if I'm told I can't do them? You are going to stop so many people growing if you tell them that there's nowhere for them to grow, that they're just stuck.
B
I've got the perfect example of this is that, and from what I've read, within that group of 26.7%, according to the CDC, they include non speaking children. Right within that group. But we know for a fact that non speaking has nothing to do with intellectual challenges. Given the right equipment, they're able to just get their voices out. And they're actually no different from you and I in the sense of like, you know, how, in quote unquote, how autistic they are. They, they just can't speak. They're not given the, the same opportunities simply because they can't speak. And imagine we had done that with Stephen Hawkins.
A
I was just about to say this dude, imagine if he'd been, you know, in the chess, you know, speechless before his, his theory of relativity, you know what I mean? Like, there's just so many people that would have been capped. I mean, I know people who were mute until they were five, six years old and their first word was a formed sentence. Like, I've met people before, the deaf, yeah, and speak in sign. And I've tried to like, sort of have some of the funniest people I've ever spoken with. And I just think it's such a shame that, because they, there are people that do not fit this average sort of, you know, oh, you can't hold the conversation. Or, you know, you do things in a slightly different way because it's not the quote, unquote norm. It's broken, it doesn't work. And you know, I, I read this story and my heart goes out to Jody because I think under the wrong circumstances with, you know, the wrong environment and the wrong school or everything, I do not know who I would have been if my parents had not gone. This system is failing our son. It's not our son. That is not fitting into the system. I don't know who I would have been if I had been told that my potential was nothing. Because it's not. It's really not.
B
So I've actually, I just thought of it, I've just. If they want a different categorization for autistic people like Jody, don't give it to them at 3, give it to them at 25. Oh, when the synaptic pruning has done its thing. By the way, our brains are always developing. I mean Jody at 28 could. Mass could massively improve by the time Jody's 40. But I'm saying at 28, if, like this article says, she needs round the clock care, help eating, getting dressed, using the toilet, maybe a different, you know, label, as it were, would suit someone like Jody now. But don't give it to them when, when they're a little kid, don't give them to them when they're a teenager. But once they're past that second round.
A
You know, frontal lobes developed, all of this sort of thing.
B
Exactly. Once their brain has fully developed to a. With within, you know, a human biology standard and they're still like this, that way you've not kept anyone's potential. But what you then do is then you bring more awareness to people like Jody who are an adult who cannot look after themselves because there are so many autistic kids that can't look after themselves. But as adults they actually end up being able to. I mean, let's be honest, there's lots of kids that can't. I mean, kids can't look after themselves was what adults are for.
A
I was rubbish with money. And then literally around 27, it just made sense, genuinely. Like I was really bad with keeping track of money and paying bills on time and things like this. And now you can ask. I'm great with money now. I've had to learn it, it didn't come naturally to me but around 27, 28 it was, I did feel my brain just sort of develop a little bit and I was like, oh, things that I wasn't so good at before, I can now do.
B
There you go. We've, we fixed it for them. Wait, wait until they're adults then, then we can look at giving them a different diagnostic criteria. Maybe then we won't be arguing all the time. Because the worst thing about all of this is it takes the focus on what is more important and that is getting services, facilities, understanding, awareness, support. That's what's important is support. For Jody as much as support for me and you is that when we all have an impairment in certain environments, in certain situations, when it comes to certain things. So we all need support.
A
Well said, my friend.
B
My heart goes out to every single neurodivergent person out there. And except Elon Musk. He can fuck off. And yeah, plenty of love.
A
Yes. Thank you so much everybody. This has been this week's Hot Topic. We'll be back with another episode on Thursday with your spicy news on the Friday, keep listening to Ashley's mindful Monday. Start your week right, get your head clear. So take care of yourself, everyone. Stay safe out there. Don't forget to love yourself. We'll catch you next time nightly.
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Bye.
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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 conversations 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, TikTok. 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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Ever.
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Voila. You've got yourself a vrbo. Want a vacation that's completely and totally host free? Make it a vrbo.
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Episode Title: Hot Topic: The Problem Isn’t “Profound Autism” — It’s the Label Itself
Hosts: Jordan James and Simon Scott
Date: October 16, 2025
In this episode, Jordan and Simon delve into the controversial discussion around the labeling of “profound autism” and “severe autism.” Prompted by a recent New York Times article and ongoing debates in both advocacy and scientific circles, they question the impact of these labels—not only on individuals within the autistic community but also on public understanding and support. Throughout, the hosts reflect on personal experiences, the diversity of the autism spectrum, and the implications of categorizing severely impaired individuals separately from the rest of the spectrum.
“If you think that autism is this terrible, awful, evil thing that damages a human, that it's only bad, only a catastrophe, then you will use the word severe autism because it's severely bad.”
— Jordan (03:30)
"I want to help these people, even if they are a minority... Even if it was 2% of the autistic population, that is 2% of people that we will not, I will not forget about."
— Jordan (10:14)
"I'm not actually against...having a different category for these autistic people, but...words matter. Words really matter...From the early stages of this podcast, we were saying, words matter."
— Jordan (15:04)
"If somebody had told me, this kid's not going to get a job, he's not going to have a relationship, he's never going to play sports, he's never going to do this, why would I even try any of those things if I'm told I can't do them?"
— Simon (22:08)
"If they want a different categorization for autistic people like Jody, don't give it to them at 3, give it to them at 25...that way you've not capped anyone's potential, but you bring more awareness to people like Jody."
— Jordan (25:01)
"Because the worst thing about all of this is it takes the focus on what is more important, and that is getting services, facilities, understanding, awareness, support. That's what's important."
— Jordan (27:13)
The discussion is conversational, candid, and warm, blending advocacy and humor ("Except Elon Musk. He can fuck off.") with heartfelt concern for all autistic people. The hosts are passionate about community, wary of medical-model labels, and encourage a strengths-based, inclusive perspective.
Jordan and Simon challenge the wisdom and consequences of creating a “profound autism” category, arguing that early, rigid labels risk both reducing expectations for autistic people and perpetuating stereotypes. Support, understanding, and flexible, person-centered approaches—rather than new pathologizing labels—are what truly matter. Their insights are invaluable for anyone seeking to understand the fullness and diversity of neurodivergent experience.