Understanding Autism

Autism is a highly misunderstood condition, probably due to autistic people's varied strengths and weaknesses.
So this week Richard & Fiona are chatting with therapist Paula Stone, who works as an advisor in schools helping people with neurodivergent traits to understand more about why they feel the way that they feel.

https://www.meadowsweetholistichealth.co.uk/

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Transcript

Richard: 0:09

And hello to you! It's Therapy Natters time! If you fancy half an hour of listening to some therapists talking about the weird and wonderful ways that humans all bumble around on this big old rock in space, just trying to find ways to be safe and happy, then guess what? You've come to the right place! How do, Fiona? Are you feeling safe and happy today?

Fiona: 0:33

Absolutely. I'm quite enjoying sitting on the rock in space today. Yes, well, I usually

Richard: 0:37

I've got nowhere else to be.

Fiona: 0:39

no, I'm happy sitting on it. I don't have a need to get off it. No, don't want to go to space. No, we're just fine here where we are. It's good.

Richard: 0:50

When you're a kid, and people say, Hey, what do you want to be when you grow up? So many people, often boys, because of the culture that we've had, they will say astronaut. Because they want to do something exciting. When I was little, I wanted to be an actor. Or a police officer. I wanted to be a policeman. Don't know what that was all about.

Fiona: 1:12

Power.

Richard: 1:13

Maybe. I had a little, little boy syndrome, if that's the equivalent of little man syndrome. It's like, I'm quite short, I don't want to get bullied, I'll be a policeman, that way nobody will bully me. And I remember getting a little... Policeman's kit. One Christmas when I was about 7 or 8 or something like that. A little pair of handcuffs in there, a little water pistol, it was quite fun. And it was in a black briefcase. And I'd carry it around the streets, looking for people who might be doing things wrong and then telling them off. What? What a strange 1980s child

Fiona: 1:47

So cute.

Richard: 1:48

I'd totally forgotten about that. It'd be a dull world if we were all the same though, wouldn't it?

Fiona: 1:53

It would. Absolutely. We don't all want to be the same. Well, I don't think the world would work if we were all the same. It would be very, very strange.

Richard: 2:02

I think it would be a joyless world if we were all genuinely clones of each other. It wouldn't be fun. We do need that diverse community that we've got. Yeah, we need a mix of people. With different interests and different likes and different passions. If we all like and want the same thing, then... What's the point?

Fiona: 2:30

I was reading a book, well actually I wasn't, I was cheating, I was looking at it on Headway, just earlier today Matthew Said, book on rebel ideas, the power of diverse thinking, and the idea that if we, all stay within our little niches, little groups, and we just collude with each other as to, beliefs, opinions, and so on, and getting the more diverse opinions that you can into a situation. The better.

Richard: 2:59

Mm.

Fiona: 2:59

We have a guest today, don't we? We do,

Richard: 3:04

We do! Ah, I think that segues in quite nicely.

Fiona: 3:07

Richard likes his segues. So we have, we have Paula Stone with us today who is a therapist from Norfolk. And not only does Paula do hypnotherapy. Psychotherapy, but also works with herbs, so maybe at some point we can have her back talking about how herbs can aid mental health.

Richard: 3:28

Oi, oi.

Fiona: 3:29

today, her other specialism, oh Richard,

Richard: 3:34

Sorry.

Fiona: 3:35

her other specialism is about working with people with autism. She works also as an advisor in schools, helping people with neurodivergent traits to find their way in the world. And I've found it very interesting talking to her over the years about these situations and seeing how the positive can be found within this rather than the negative label. So that's what we're wanting to talk with you about today, Paula. So, hello, welcome, nice to see you.

Paula: 4:08

Hello, and thank you so much for inviting me. I really appreciate it. It's lovely to be able to discuss the whole complex nature of neurodiversity. And I totally agree what you were saying, how important it is to have such a diversity in society and appreciate and value it.

Richard: 4:24

Yup. There's nowt as queer as folk I'm evidence of that

Fiona: 4:29

But maybe if we start by, if you could help us with a definition of neurodiversity,

Paula: 4:36

Yes, I think, basically, it's all about natural variations to the human brain. Just as we all have natural variations in the way of hair colour to height but with neurodiversity, it's a a kind of neural diversity, to do with the brain and cognition, so it's just a natural variation. And within the neurodivergent communities, should I say there can also be other terminology such as, you know, dyspraxia, ADHD, dyslexia, dyscalculia, and other speech and language communication difficulties. But it's, it's really the, the neurodivergent paradigm is about diversity on how the brain works. It's also, when you mentioned about the kind of how do you describe, it's interesting because it seems through research that many people with neurodivergence prefer to identify in first language, so possibly saying that I am autistic because their autism is part of their core identity as opposed to using person in the first language that I have autism or that person has autism. And you can do hashtag actually autistic on Twitter and it discusses that. But I think the whole point is that I'm really not over keen on labels because I think it actually is a barrier to potential. It can help. And unfortunately in the systems that we have, you know, we do end up having to have labels so funding can be accessed and also the right level of support. But again, you know, the. The idea of low and high functioning is also unhelpful because it should really be talking about needs, support needs as opposed to functioning. Because there is, as was called the spectrum, but it's more like a rainbow because there's sort of such a range of natural variations, as it were, and different needs. So that's what we need to look at. How someone would prefer to be identified with and actually at the end of the day, it's about nothing about us without us. Usually I do training in neurodiversity with someone who is neurodivergent because it's very difficult for me to discuss this without, You know, having, having, well, we all have some neurodivergency, I suppose, but it's, it's difficult to discuss on someone else's behalf, as it were. So I have asked a few of my clients with autism, if there's anything that I could contribute to this podcast. So I will, as we go along.

Richard: 7:19

Oh, nice, thank you. Be really useful.

Fiona: 7:21

when you were saying about the, the, the rainbow and the spectrum as it, as it used to be called, and the, the high functioning, low functioning To me, it all tallies in that we're not just on one spectrum or continuum of neurodivergence. There isn't a place which is the right place to be and then you move towards further and further not right place to be. And it depends on the context as well, doesn't it? So even on the high functioning, low functioning. Somebody could be labelled with high functioning on one aspect of life, but would be labelled low functioning on another, but that would apply to everybody.

Paula: 8:06

Yes.

Fiona: 8:07

I think what you then said about we're all neurodivergent, to me that's where the most sense comes, that we're all different on these things, and to go to Richard's usual point of it's only a problem if it causes a problem. And of course, sometimes it does but sometimes there can be benefits as well.

Paula: 8:29

Yes, absolutely. the spectrum is not a line. It's, I think there's at least eight dimensions. And Going back to the excellent programs by Chris Packham, who did three I think it, no, he did two documentaries where he looked at three adults with autism and they provided a film on how to express how they feel and what it's like in their world, which is So, insightful, and I'd really recommend looking at those, but there was one individual who was unable to communicate but he was saying, you know, don't ignore me because, you think because I'm not communicating, I can communicate in other ways. And it was, he was expressing himself, how he sees the world. And unfortunately, you know, he was perhaps, again, ignored in some ways because of that. So yes, it is really important the variations within this. And also looking at the medical model and social model which I used to do years ago with, this awareness raising of disability because disability now is deemed as dis. So, you know, disorder used to be autistic spectrum disorder or a disability rather than looking at, as you said, Fiona, the strengths. The skills, the amazing unique way of seeing things with many autistic adults and young people that I work with. Whereas neurotypicals can spend some time doing one step at a time trying to find a solution. It's incredible, some individuals can actually find a solution in a completely creative and different way And of course there are many skills that they can use within careers. Because I'm a careers advisor and I go into schools and work with individuals with autism as well. And I've also supported many people with autism in the workplace. And it's all about awareness raising on how the environment can be changed to accommodate their strengths and skills. Because yes, there may be difficulties in the way of social and communication skills. But it's their communication style, which may be misinterpreted. Such as taking things literally, not liking social chitchat, possibly. Difficulty possibly with eye contact staying on preferred topics, their special interests. When they get stressed or feel overwhelmed by the sensory overload, you know they may be unable to stop a meltdown. When they get to that point and feel overwhelmed, then it's difficult to you know, they have to withdraw or move away. And can I just also quickly mention, sorry, talking a lot there's also, you know, Aspie or Asperger syndrome, which, again, many people I've worked with over the years, and I used to work for Asperger East Anglia, they still like that terminology, but there are many others who don't want to associate now with Asperger's because Hans Asperger, who founded that, as it were has now been associated with Nazis, I believe. So many people don't want to be thought about via him. So, it's interesting, again, you know, the terminology.

Richard: 11:50

I'm quite interested in this myth that girls don't get diagnosed with Autism that it's only boys. And if, in the last generation or so, that's been observed. That's been observed for a reason, and likely, that's because of culture. That's nurture, not nature. That's because girls have been taught from a young age to mask how they feel, if it's negative in some way. They're to be expressive with positive emotions and talk all about love and flowers and everything's beautiful and pretty. But if they feel anything else, then they've got to hide that. Whereas boys are taught that they can feel anger, and pride, and rage, and bravado, and all these different things. And actually, we're all able to feel all of those things, and it's culture that shapes that. So girls learn skills early on to hide how they feel.

Paula: 12:57

Yeah, I, I thank you so much for bringing that up because I'm really concerned about this because it used to be certainly, you know, I've been working with people with autism for 30 odd years and it certainly used to be, you know, the, the kind of quote of 10 males to one female. Now it's more like two to one and the underdiagnosed women, it appears to be at least 35, 000 women in this country. And the other problem is rather than just being underdiagnosed, it's also misdiagnosed. So many people can end up with other mental health issues or diagnosed with, even bipolar or, you know, depression. And unfortunately, there's an eightfold risk of suicide as well with these individuals. that's what I found from the, I think that was the Chris Packham documentary. So, you know, it's, it's huge, the issues about mental health and misdiagnosis. And I was listening to a webinar the other day, where a mother of a, a young person who has autism, she has been diagnosed with psychotic episodes and therefore on very heavy medication, which the mother feels is inappropriate for her because it's more about her autism rather than deemed as needing that kind of medication. So it's, very interesting and I think we all need to become more aware of this.

Richard: 14:23

Certainly, if there was a, if there was a button that said, Press this button, it will, in quotes, Cure your Autism, I, I think a lot of people with Autism, A lot of people, a lot of Autists, I've heard people describe themselves as Autists, which is an interesting phrase, they wouldn't push it. I don't want to change who I am. This is who I am. What the hell? What? I'm not going to push that. But a lot of people in the public who don't fully understand autism would think, Well no, that's a disability. Surely we need you to not be autistic. Well, if there weren't autists in this world, so many things wouldn't have happened. Because there wouldn't have been people that had that attention to detail or that focus to invent the things that have been invented and create the things that have been created. But there's this strange attitude in culture that, like we be saying at the start, everybody's gotta be the same. But I think it's a, there's a, there's a dissonance because yes, everybody wants to be the same, but we also wanna be different. We all wanna fit in. Be the same as everybody else, and wear the same clothes, and wear the same shoes, and that's how fashions grow and develop. But we all want to be unique at the same time, and be individuals, and be ourselves. As if everybody screams into the void in one single, solitary voice, YES! I AM AN INDIVIDUAL! We do live in a funny world.

Fiona: 15:54

We do, do. And when you, when you started saying that, if you could press a button and, and I can't remember exactly the phrase you said, was it remove your, or just be,

Richard: 16:04

Oh no, I used the C word!

Fiona: 16:06

cure? Oh, you used the C word. Oh,

Richard: 16:10

Yeah,

Fiona: 16:11

yeah. Okay. Gosh, I didn't even go there.

Richard: 16:14

to me is absolutely the dirtiest of C words when comes to mental health

Fiona: 16:18

terrible, terrible word. But my thought immediately went to well, what would they be without it? What does it, what does it mean? Because if you, and to use the C word properly, if you cure an infection, so you take antibiotics because you've got an infection in your toe, then that is

Richard: 16:39

because you are not the

Fiona: 16:40

You are not, you are not the infection. So, it doesn't even fit as a word. What would they be? And we do have this, don't we? Both, we, we have this with, with clients who, who think that in order to not have their problem, they've got to change to be something completely different. And that's not, always the same. It's about modification rather than complete change. So, moving along a continuum. So if somebody says, I'm an anxious person, then you don't want to become the person who's not anxious at all. You don't want to change it completely. So, maybe that applies in this context as well.

Richard: 17:24

Am I right in thinking that there's a lot of people who are autistic that it doesn't cause a problem? There might be some minor problems that pop up, but they handle them really, really well. And they might have some frustrations and impatience and think, How did that happen? Why is that bothering me so much? But they take a few deep breaths and carry on. And their autism isn't a problem to them? But then, of course, they wouldn't seek a diagnosis, because it's not a problem. And that's why, when there are lots of these online tests for do you have autism, and it's only 20 questions. Do you like counting? Do you like flags? Yes, yes. Wow, you must be autistic. That's not quite how it works. But so many people can take online tests that might take ten minutes if they're a little bit more detailed and see that they score quite highly, but actually, I don't need a diagnosis, this isn't causing me a problem. It's interesting, it's data, but good to know. As long as they don't think, Ah, it seems to be that everybody's got autism nowadays. It's clearly made up because of this.

Paula: 18:39

Yeah, I think, it's certainly a personal preference whether you go for a diagnosis. It's incredibly difficult to get one anyway because it takes years It's, you know, when I worked for Asperger East Anglia, it was a two and a half year at least wait. So, there is more self diagnosis. And there is, yes, the AQ Cohen test online and that kind of thing, which isn't a diagnostic tool, but it gives some indications. But you're right. At the end of the day there may be many professors at universities teaching engineering or or computer programming or whatever who may never require that diagnosis and are fine in their, in that environment. I think when it comes to younger people in school, there are things called education health and care plans where a diagnosis can be helpful because then they can get the right type of provision. I mean in Norfolk there is a a special school, which is actually particularly for individuals with autism. And they only have six people in a class. There's a breakout room. The whole environment doesn't have any sensory overload because it's, sort of soundproof flooring white walls. So no sensory issues at all. you can tell that within that environment, an individual's going to probably, progress better than perhaps in a mainstream where there, again, there's a whole range of issues and bullying is, is paramount because difference is often not, because that's what we're talking about, it's just difference is not actually accepted in many environments, particularly with peers in a school environment. So it's about awareness of others and how we can change the environment. And this is what I do work with employers, to see what can be done to include that individual so that they don't feel different. Although, as you said, difference is important and, is a skill and their unique skills need to be valued. Because they are incredible skills in some areas. So it's really, looking at that whole individual, again going back to where they feel they need any support and one of the main areas when I'm working with adults with autism or are neurodivergent their main area is particularly male, autistic individuals, they are really keen to have a, a relationship, and it becomes a real barrier to them in life in that they find it incredibly difficult to act appropriately. And talking to one person, he was saying he would like more role play, practical exercises to help learn those type of behaviours. But then you've got to be careful because there's the other side of our ableism and how, you know, why should an individual have to adapt so much in a neurotypical society, whereas the neurotypical society should be adapting to that individual and make reasonable adjustments under the law. So. It is a difficult one and I think this ableism is about not needing to be fixed and don't need to mask or camouflage and, and hiding those stims which are those things like, um, hand flapping to help self regulate to hide all that is actually totally exhausting and therefore can lead to major mental health issues. it is a difficult one to think about.

Fiona: 22:13

Could you expand a little bit on that word stim? I think that might be one that some people aren't aware of.

Paula: 22:21

Yes. It's sometimes a way that some autistic, people, help with, kind of self-regulate their behavior. Uh, just self-regulate. It's a calming, a self-soothing, shall we say, behavior. So it's quite useful sometimes. I have a box which has a range of things in there which can help that individual get time out, so feel calmer and not get too anxious about a new situation because of course any change or change of routine may become a major issue. So a box such, such with fidget toys or visual stims favorite books, safe snacks, headphones, you know, they're often in school, there are the Red Ear Defenders. So it helps that it's a DIY really sensory box where there are nice textures, calm scents, soft items, things like that, that can help with that self soothing as it were. That's why many people with autism have to camouflage their true self because that difference would cause bullying and other, other negative responses.

Richard: 23:30

And yet even people without autism would do an equivalent of stimming. They're still self stimulating. There might be hand wringing, or twiddling their thumbs. There'd still be something, because there is this need for... Self stimulation, for stimming. People without autism will do that all the time. I'm assuming, here's me assuming that, Oh, everybody, even without autism, will do that. And then go, Oh no, actually no, all those people had autism. But, I doubt that very much. People don't twiddle their thumbs and, Ha ha ha, autism. No, they just, they were bored. And their body needed something to do. But the more I say that, the more that sounds like autism.

Fiona: 24:15

No, I, I think that it wasn't, it wasn't a phrase that I'm, I, I was aware of before, so thank you. But self-soothing behaviors I don't, I don't think that leads to a, a diagnosis or a label. Uh, And we, we do do it, you know, it could be stroking the thighs, uh, or twiddling the foot. so, so many things that people do but it's, it's

Richard: 24:38

And they're not judging themselves when they do that. so those that do do those things, just because it's natural to do that, we shouldn't be judging somebody with autism who needs to do the equivalent.

Fiona: 24:49

I'm going to be a little, see what you think about this, but is there a context in which, you know, if, if we're talking about somebody who does these things in, in their own home or just whatever they're doing, but there could be contexts in which they're, they're not applicable, could they not? Or if it's

Richard: 25:07

Nothing's a problem unless it causes problems,

Fiona: 25:09

could cause, it could cause problems to other people. I, I was just thinking of a time when I was at a theatre and the guy next to me was waggling his leg like absolute crazy and that was disturbing everybody around. So being able to mask that in that context, I did actually ask him and

Richard: 25:31

you not?

Fiona: 25:32

just, just, just, um, and At the interval, I said, oh, sorry, I had to do, oh, sorry, I felt the need to do that. And he said, don't worry, my mother tells me all the time. So it was absolutely fine, but now that you're talking about it, I'm thinking, well, maybe I was insensitive.

Richard: 25:51

Maybe,

Fiona: 25:52

Who knows? Who knows? I don't know.

Richard: 25:54

Yeah, and this the world that we live and we need to natter about I

Paula: 25:58

think we I do think that we all try and need to be authentic though. That's part of therapy, isn't it? Where we peel those layers to find the authentic self. That's the ideal self. Because we're all masking, well, many of us mask in some ways, but the trouble is with those with autism who mask, it's completely exhausting. Their Difference in executive function in their brains, how they process and plan things in daily living and having that camouflaging and masking can really cause, as I said before major mental health issues and completely exhausting. And regarding, you know, if it ever gets to the point of meltdown, I've got a quote here from someone, it says, I hate barbecue parties, they're guaranteed meltdown situations for me, they have all the perfect meltdown ingredients, too much sensory stimulation, too many people. Too many anxiety triggers, way too much. All blending in, to process all at once. So meltdowns aren't neurological response to stress, they're not emotional overreacting, it's that they can't and not won't do something, it's that overwhelming feeling. So I think we all need to be mindful of that really and it'd be really lovely if we were able to let individuals be more authentic.

Richard: 27:14

without labelling them as selfish. I remember one of Chris Packham's early documentaries when he was first diagnosed with Asperger's And, and he was saying how... He refused to go to his stepdaughter's university graduation, and she was very, very proud of these are the things I've done, and he said, I'm not going, just no, just not going to go. And she knew he wasn't being selfish because this was, he was explaining why this was such a difficult thing for him to do. That the amount of pleasure that she was going to get from having her stepdad there, which might be an extra, an extra two points out of ten on the, this makes me feel good scale, I've gone from seven to nine because my stepdad is here. For him on the anxiety scale, it goes from living at one to living at Ten. Full of anxiety. And, to him, quite rightly, nothing is worth that pain. And he wasn't being selfish. Or if he was, that's okay. We should be able to have those conversations and say, that's not for me.

Fiona: 28:18

Selfish is a horrible word. that's a perfect example of something that other people might label selfish, but it's not because it's, it's for everybody.

Paula: 28:32

And it's just respecting and value differences at the end of the day, isn't it? And helping everybody use their potential and their skills, their unique skills and their, and just understand that unique profile and respect it. It's quite useful if people have autism or, think they have to actually get online with the different communities on Facebook, Twitter, because there's some really good links there where they can talk openly about how they're feeling and share their experiences. Which can be really helpful.

Fiona: 29:05

I was just thinking that for people who are autistic and struggling with it, or have autism and struggling with it, that it may be that people like Chris Packham, could be good people to model in the, the way that they live their lives. And I'm just wondering who else, who,

Richard: 29:25

Not Elon Musk! He's not a good advert for autism. Sorry. Sorry, Elon, if you're

Fiona: 29:31

well, it depends on your value systems, doesn't it?

Richard: 29:34

Yeah, I'm not a capitalist.

Fiona: 29:35

Well, the, it depends on your value systems. So, but, yeah, so

Richard: 29:41

fair. Sorry. Sorry. Sorry, Elon. That was very judgmental of me. I wasn't being a counsellor at all there.

Fiona: 29:46

you don't have to be perfect, but no. Are the, there will be other autistic role models.

Paula: 29:53

There's plenty, uh, supposedly Einstein. there's quite a lot actually, but then I've, I've stopped saying those now because I'm unsure whether the individuals actually identify as having autism. So it's a bit difficult. There's, there used to be a whole list famous people, one thing I just thought, the George Bernard Shaw quote might be quite useful. The reasonable man adapts himself to the world. The unreasonable one persists trying to adapt the world to himself. All progress depends on the unreasonable man. So I think, people who have really changed the environment changed the society, have been autistic, And found new ways of doing things. So, I can get a list of people if you'd like, and you can just Google it and there's a lot. But I never know really if they would like it to be said that they're autistic. Do you know what I mean? So, because I used do that a lot, but.

Richard: 30:49

That's their business.

Fiona: 30:50

And that's, that's absolutely fine. But I think the, you know, generally the idea of modeling to see what you see of yourself in somebody who's been successful in the way that you view success and then see what it is that they're doing that you could do.

Paula: 31:08

Totally agree. And it's a positive role model, isn't it? A positive role is really important. Yeah, when you see people like Chris Packham.

Richard: 31:17

Absolutely. There are quite a few people who have been open about their diagnosis and likely wouldn't have created the things that they've created if they were neurotypical. Eminem, Lionel Messi, Daryl Hannah, Dan Aykroyd, Anthony Hopkins. They might have struggled, but they've still been able to thrive. Not just despite their autism, but probably even because of it. And I think all this is really, really useful for everybody to get their head around. Not just those that might be autistic themselves. But for those that need to learn about neurodiversity, to recognise that kids shouldn't be written off just because they're autistic. A generation ago, so many children were just ignored and never given the chances they deserved. All those wasted, wasted opportunities that we had. And that's, that's really very sad. Anyway, let's finish on a high note. Hurrah to all the autists out there. Thank you for listening and I hope we did you justice. Feedback is welcome. Anyway, we need to wrap up. Have you seen the time? We'll be back next week as always and there is a link in the show notes If you've got a question that you'd like to ask us a topic idea. Feed it to us and we'll do our best to squeeze it into an episode, right? Let's disappear for now. Have a good week everybody. See you soon.

Fiona: 32:55

Thank you, Paula.

Richard: 32:57

you. Thank you very much. Thank you. Bye.