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Transcript: Shout Volunteer Pip speaks to Shout 85258 for autism awareness week

[Shout] Why did you become a Shout Volunteer?

[Pip] It kind of came out of my own mental health journey, I guess. So I was diagnosed very late. I think I was 31. And before that, I'd had a bit of a nightmare time with depression, anxiety, eating disorders, and never really being able to get to the heart of what the issue was, I guess. And then I got my diagnosis and I started having therapy with the psychotherapist who diagnosed me and I started to feel a lot better as a result.

So that kind of gave me an interest in mental health in general. I did the St John's Ambulance Mental Health First Aid course through my work, which I really enjoyed, and then my sister recommended I look into Shout. So I did and the rest is history.

[Shout] And how have you found the experience?

[Pip] I found it overwhelmingly positive. So for a start, I think as a community, it's incredible. The supervisors and the volunteers are all just lovely, lovely people. The support is amazing and it's lovely to be a part of that community. And obviously, it's a rewarding thing to do in and of itself. But as a personal experience, I've found it really interesting. I think there's a lot of talk in general about self-care and support, and I’ve found I've been able to take quite a lot from it about how I'm feeling as well as how the texter is feeling.

[Shout] Just going back to the bits of data that I shared at the beginning, 1% of the UK population having a diagnosis vs 6% of our texters sharing a diagnosis with us. Did that surprise you at all?

[Pip] I don't think it surprises me. I don’t think it’s the autism that will be causing a load of problems for you, it's just that you're more likely to encounter those problems because things are not set up for you. And I think particularly during Covid, I don't know about anyone else, but for me, the idea of having my routine and everything taken away was absolutely terrifying.

And I think that we're going to see more issues going forward. For example, I live on my own, so I've been able to control my environment completely, which actually has helped me get through. But that's going to be a real shock when I have to start going back into normal life.

So, yeah, I think it's not really a surprise because I think the added challenges in life will lead to anxiety and depression and all the things that Shout try to help with.

[Shout] Why do you think it's important for people to be able to text to get support?

[Pip] I think a lot of people feel more comfortable expressing themselves in text. Like personally, I've always hated using phones, especially to talk to strangers, even if it's just calling up your bank or something. I've always hated it. And even with people close to me, I sometimes find it's so much easier if you're taking your time to write things so you can explain what you mean a lot better. And I think particularly with younger people now, they're always on their phones. It's all about texts. It's a really easy way for them to reach out for help, and I think that's really important. I think it's making support more accessible for a wider range of people, and particularly if they are struggling with anxiety, which is one of the key reasons that Shout is there, then I think texting is a much easier way for them to be in touch.

[Shout] And there's an element of control there as well in that you can control when to start the conversation, when to end the conversation, how much you share.

[Pip] Absolutely.

[Shout] What would you say to somebody with ASD or autism spectrum disorder who is thinking of texting Shout?

[Pip] I think I'd say the same that you say to anyone else. I mean, it's a safe space to air what you're thinking and what you're feeling and being able to express yourself without judgement. I don't know whether this would be more relevant to somebody with ASD, but I think sometimes because we have very black and white thinking, or we tend to, and because maybe we can be confused by how neurotypical people behave sometimes because our brains don't work in the same way, maybe we've been burned in the past by expressing ourselves very bluntly. I know I have. So maybe it's nice to know there's that safe space to say like flat out, “I don't know why this person behaves this way. And it's upsetting.”

But I think also what would possibly be a nice thing for them to know is to remember that Shout is there to help you and you are in the driving seat here. They're there to offer you resources to help you talk through your thoughts and any coping mechanisms for you. But if you've got something in mind that you want to raise or where you want the conversation to go, then, you know, ask the volunteers to help you.

And if it helps you to know where the conversation is going then just make that clear at the beginning of the conversation and they can adjust to help you.

[Shout] And are there any common misconceptions or assumptions that you've come across?

[Pip] Yes. So this is a huge topic. So almost universally, when I disclose to people about my autism, they will say, ‘Oh, I wouldn't have known or you don't seem it’, which shows that they do have a preconception about what they think it looks like. And I think people do have an image in their head, which I think is probably Dustin Hoffman in “Rain Man”, but I think sometimes they're not even sure what their assumptions are. So I think at the higher functioning end, I think it would be things like contact being quite awkward socially, being obsessive or having a magic gift (which I wish I had and don't). And the most upsetting one that I see a lot is that we don't have any feelings or we don't care about people. So that's not nice to hear. On the lower functioning side, I think it would be things like repetitive movements or stimming, being nonverbal or not being able to tolerate noise and things like that.

I actually don't find this idea of a spectrum very helpful because it implies that you are either very autistic or not as autistic, which is why it's not really true. And I found a really good graphic online which divides it into language, motor skills, perception, executive function and sensory. And anyone can be kind of anywhere between those. So you might be really sociable and love being around people, but find the noise of a busy party or something really overwhelming because of the sensory issue. And it doesn't really kind of match up. So I think there's a saying you've met one autistic person, you've met one autistic person. And I think it's really true.

[Shout] I think you're right, the idea of a line is really misleading, isn't it? And as with all people, we're all very different.

[Pip] Yeah and I think it means that people misunderstand kind of how much you can tolerate as well. So I don't really like when I say “high functioning”. I don't know how helpful that is, but, it can mean that you can achieve a lot and you can come across as, “normal”. But, you know, sometimes in the past I've had things like, I don't know, a social event where I thought I really don't have the energy to go there and be “on” and be doing all the things that I do that other people aren't doing, like focus on my eye contact or and the noise and stuff. And yet because people are used to you doing that day in, day out, they just assume you can cope with it because you're not that autistic. And that's such an oversimplification, I think.

[Shout] There's a lot of stats and information that I've seen, particularly recently, about the difference between the male and female sort of diagnostic criteria. So a lot of the diagnostic criteria is based on research around males and that the female characteristics, if you like, of autism might be quite different. So I don't know how you think that impacts on people who have either neurodiversity or have autism.

[Pip] Yeah, I also have [done] a bit of research and I can see there's a lot of debate. I don't know if this is just my own unpopular opinion, but I think there's a certain amount of nature versus nurture because I've encountered a lot of, particularly older men, like people's dads and stuff, who show a lot of signs of what we would have called Asperger’s or Autism. But people are just kind of like, “oh, it's just his way,” you know?

And there's a lot of talk about women masking and learning to be a good mimic, from a very early age to be more accepted, which I think I definitely did. And then typically, as I experienced, you have burnout in your 20s or 30s, which happens to so many women, whereas I think with with a lot of men it's more usual for them to be perceived as maybe a bit stubborn or to maybe want to be a bit more anti-social, particularly in older men. And like I said, it's just being their way. And so I don't know from a scientific point of view where all that stands, but I think there is a certain element of women being pushed quite hard to conform. I didn't really consider a diagnosis until I found this really long checklist of possible signs online for women. And it included things that I would never have thought about. So I wrote some of them down here, like naivety, having a defined sense of right and wrong, preparing scripts of things to say in advance, like my list, and having a lack of filter or oversharing, daydreaming, even things like having friends who are maybe outside your peer group as you're growing up - older or younger -and I think it's really interesting. Like none of those go back to, like we said earlier, about those stereotypes to the point where I've got at least two or three friends now who are thinking about pursuing a diagnosis because they suddenly say, “Oh, actually, if you're saying all these things are part of your autism, maybe I've got it, too.” And I think there are so many, I don't know whether we call them kind of comorbid issues, that people with autism experience like eating disorders, generalised anxiety disorder, depression. And it's not the autism causing that. It's trying to cope with the world that's not set up for you. And sometimes really small adjustments make all the difference. So I think it's really important that we start becoming more aware of this. Not a spectrum and how diverse it is.

[Shout] Yeah, absolutely, and I've got I've written it down here that men are more likely to be diagnosed with autism than women at a ratio of three to one, so three men for every one woman. So it is quite a gap. And I think, as you say, having that checklist or having that idea, that's beyond the stereotypical, you know, what autism might look like is really important. And I think just knowing that that's OK, it's OK to feel that way. So, yeah, I think anything that we can do to make that better is an improvement

[Pip] And, you know, diagnosis is a real journey. And I know my initial feeling, apart from that relief of like all these, you know, I've never felt quite, I don't mean “right”, but I've always felt there was something different about me and I didn't know what you get that feeling of relief. But then you do go through a kind of mourning period where you feel like I'm broken and this is a thing that can't be fixed. You know, it's not like, “oh, I've got anxiety”, “I've got depression”. And if I take antidepressants or I do CBT, I'll be better. But then once you get over that bump, you know, it is like you say, “OK, well, it's OK, this is who I am. And it's a key part of who I am.” So I hope that if more people are diagnosed, then they can start to accept it and see it as part of their identity.

Listen to the interview.