We are the advocacy fellows who really think well and empowering young adults with learning disability. So tell me what it was like growing up with autism. it. you don't know any different. Because you've always been autistic. That's the way you were born, isn't it? So you don't know what it's like to not be autistic. I think that's a pretty tricky open ended question, isn't it?
Which is one of the difficulties in communication is that when questions are open ended, there is so much information that could be answered that it's hard to know which bit to answer, isn't it? So you find it much easier to have a closed question or a very specific question, so that you know which part you need to be answering. Would that be right? Yeah. So in terms of what it's like to be autistic, that's again it's a pretty that's a pretty hard question to answer isn't it.
we live in a in a world that is built for neurotypical people. And so they don't other other people don't necessarily understand. You don't understand what it's like to be neurotypical and other people to understand what it's like to be autistic. Is that fair? Yeah. And so in terms of communication, neurotypical people have a particular way of communicating, which is very different to an autistic way of communicating. in an autistic way, it, it's, it needs to be.
And you prefer it to be direct and concise, don’t you? Which to people that are not autistic and they can often think that that comes across as rude. or blunt, don’t they? And so quite often people will think that you are rude or blunt when actually you are just being honest, or you are just state of fact, or you are just telling the truth. Would you say that's fair?
Yeah. Yeah. So, and the other kind of differences within non autistic people and autistic people is that you experience the world in a very different way when it comes to the environment. And your senses and so that you, you feel things in a very different way to non autistic people. So things like lights and lots of noise and Kind of just everything in your, in your day to day world, if there's too much of that stimuli coming in, that becomes a bit overwhelming sometimes, doesn't it?
And so you need time away from people and lights and noise and time to regulate yourself. Would you say that's true? Yeah. And should we go on and talk about, like the, the PDA profile that you've got? Can do. Should we first of all explain what that what that stands for. So PDA stands for pathological demand avoidance which is probably not the best wording I would say.
because that suggests that you avoid demands, which you do avoid demands, but it's not the demand that is being avoided as such. It doesn't really matter what the demand is, it is an anxiety response to being asked to do anything. So it doesn't matter even if it's something that you enjoy doing, that you like doing what you want to do. It's your brain triggering anxiety as soon as you’re asked to do anything.
Would you say? Yeah. And so as a as a coping strategy, you need to feel like you’re in control and that you have autonomy. And because that keeps you safe all the time you know what's happening and you can predict what's happening and you are in control. That means that you're safe and that keeps your anxiety low doesn't it? So there's a really nice phrase instead of pathological demand avoidance, which sounds not very helpful. people often say it's a persistent drive for autonomy.
You always need to feel autonomous and you need control to feel safe. And so even in this situation, me asking you to answer questions. You're finding really difficult, aren’t you? And being sat here with a camera in front of you and you, it's that expectation as soon as there's an expectation on you or somebody else with PDA to do something that instantly triggers an anxiety response, a fight or flight or freeze. And at the minute you're in freeze because you can't really respond and you will.
so when we first arrived in the room, you didn't want to come in the room, and then you did come in the room and you used your phone as a distraction. And then if someone asks something you felt like you couldn't answer. So it comes across that you're just ignoring people, which to other people comes across as really rude But for you, it's because you've got so much anxiety that's been triggered and that you that you can't. So it's not a won’t or a choice. It's you.
You physically can't do that because your body, your brain takes over. It doesn't allow you to do the things that you want to do. Do you think that explains that? Yeah. in terms of, when you're in that fight or flight situation if you was in an emergency situation, Aiden, how would you like to be spoken to by the fire service if you was trapped in a car or in a building and they need to support you? How is the best way for them to do that, do you reckon? To speak to me.
Tell me everything that’s going on. What else did we say? That's so that's a really important point isn't it. So if you, you need to know what they're expecting of you and you need to know how they're going to help you. So they need to be able to verbalize that and tell you exactly what they're doing and why they're doing it. And I think it's a really important factor within anybody that's autistic, but especially somebody with PDA, there has to be a reason to why somebody is doing something.
And if there is no reason, or you see no reason or you see no purpose, that makes it even harder for you to to, carry out that demand or request. So it's really important that they explain to you everything that is happening, and why it's happening and what they're expecting you to do.
But do you remember the other part that we talked about in terms of, perhaps if they needed to physically help you in some way, like, like touching you or what would be important if something needed to actually come up to you and physically move you. To tell me what to do. Because again, when we talked about the sensory system, you find it really hard for people to be in a close proximity to you.
Yeah. And so somebody was just going to come in and man-handle you and move you out even if they think they're helping you or they think they're getting you out of a very dangerous situation, that would instantly make that flight fight freeze happen. And in that instance, it would probably be fight and you would probably lash out. Yeah. So they're coming in to help you, but you might because you've been triggered by somebody touching you. You weren't expecting it. You might suddenly lash out.
And that would obviously escalate a situation. And you're not doing that to be unkind. And you're doing that because that's a response that your body makes. So that's a very important point that I would talk through if you think really very clearly. Yeah. and I think the other the other part of that that we talked about in the car was about, just an expectation to answer a question is, is enough to trigger that flight, fight freeze response because you can't answer a question in the moment.
So when a fireman is talking to you, they need to be able to talk in a way that doesn't warrant an answer, which is very different to how perhaps that that general work which we had pointed out right now about your name, and that's an instant demand, and that will instantly actually need to shut down because they're expecting you to say what your name is, and they're trying to get information out of you to see how if you were, how you were, if you, in any way, know that they're doing their job,
that don't change that wrong, that that will trigger you to shut down. Yeah. So it's it's important for us to know that if they can talk in a way that doesn't need an answer, but they can just be there to explain and reassure them. That would be very helpful. Yeah. if I was asked to do something that's instantly very difficult, I Aiden has one speed, and that's.
And that isn't because he is being purposely slow or, or, rude, or trying to be a rebel, which is what we often, you know, we joke about. It's actually because agent is assessing the whole situation. There is a demand on him. There's an expectation to leave which has triggered that flight fright freeze. And when you hold that to the very, very last minute before you actually do something.
And I think, like I said, if it's an emergency situation and everything is going at a very fast pace, that will be very, very difficult for you because there is no autonomy that there is. This is what you're going to do and you to do it. and someone else is enforcing that on, you know, make sure instant response is to hold back. And yes, I'll do it, but I'll do it in my own time when I assess the situation. And there is really no other way out of here.
And so I think that's a that is important to know. Yeah. So if you were to be in an emergency situation, quite often other people perceive that risk as very high. Rightly so. Aiden may not necessarily perceive that as a high risk. because often you think you're invincible. Would you say that's fair?
and often he perceives that other people will move out the way, for instance. So, if a car was coming down the road and I was crossing the road, Aiden's instant response would be more he can see me, he's got eyes and I'm in the road, so therefore he will stop. So it's it's a different way of thinking which other people wouldn't necessarily understand.
and could sometimes potentially, you know, put you or other people into that kind of dangerous situation and a typical person's response is to do things quickly and safely and, in an organized manner. But but that's very expectation and demands heavy which you would be triggered by. so that again is an important thing for other people to understand why you might behave in that way, like we may be holding back for not responding instantly to somebody’s request.
Yeah. what does it feel like when somebody asks you to do something like without giving a reason? For not explaining why you have to do something. I don’t know. can you explain what that feels like inside you? So when let's take it out of an emergency situation. When granddad asked you today when you came, and can you move the pot for me in the garden? did you instantly jump to that and go and do it? Of course I can granddad. I'd love to help you. Is that what you said? not what what did you do?
whatever that. You walked, you didn't answer him, and you walked. Really, really, really slowly to the garden. And you were hoping, I think, that I would probably go and do it for you. Do you think that would be right? but that isn't because you didn't want to do it. That's because - it didn't need doing, more to the point. Why did it not need doing?. Because granddad doesn't need everything doing when everyone’s round there. Things don’t have to be done right at that minute.
Okay, so you would say you would happily do it, but in your own time. Yeah. And I think that's the point you're making. You would do it in your own time because that puts you back in control. And that gives you the autonomy to, to be able to get through and stop that anxiety being triggered. Yeah. So I think one of the biggest elements within, within autism. But that it's highly, indicative of a PDA profile is the need for equality.
And in order to get that kind of equal, equilibrium between people. So in Aiden's world, everybody is equal. There is no hierarchy. There is, you know, he couldn't care less whether you were talking to the prime minister, to a police officer, to a four-year-old child. Everybody is treated equally in your in your view, aren't they?
That's how you see the world. And and that is why trust becomes such a massive, it has such a massive influence on you being able to connect and build relationships with people because it isn't about where they are in a hierarchy of the our society. It's about whether you trust somebody, and that's how you enable relationships and connections to be built.
and so if you were in an emergency situation in a typical, in a typical world, the majority of people would trust the firemen that come in through the door to come and save you. And you would not you wouldn't necessarily automatically trust somebody just because of their job title or their position you would need that relationship with them first.
Yeah. And that's why communication in those situations is so key and that somebody is consistent and they are clear and concise and direct, and they enable you to feel safe. And that's a really important part of PDA. Because everything in your world is completely equal and you don't Feel that instant power push and so somebody has to earn that, trust and earn their respect to be able for you to trust them. And that's a very big important part for you.
As soon as somebody loses that trust that you will, they lose your respect that you can't have a relationship with them be. Yeah. And and they lose that respect by not being consistent, not doing what they say, doing one thing, saying another. People have to do what they say. and always stick to that don’t they?
Yeah. And so in, in an emergency situation that's really important that someone is able to kind of get that rapport with you and to trust them in order to be able to not be triggered in an anxiety way to them. Do the demands are asked of you. Yeah. And I think that's important to kind of know when even in our own family situation, there are certain people that Aiden can, cope with demands from or expectations from because he has got that relationship with them. He trusts them.
There's a connection there and there are other people that he can't. And and that instantly triggers that anxiety response, doesn't it? And an anxiety response doesn't look like anxiety, does it? An anxiety response can look like fighting, shouting, swearing, disassociating, ignoring, distracting yourself, being rude. And it doesn't necessarily look like someone quivering and shaking in a corner. Which is important to say Aiden, tell me about your achievements. I've got loads.
I've done my level one surf coaching, I’m a qualified surf coach, qualified beach lifeguard, coast serial instructor set up my own business school ‘Aloha Kakou’ And I work for a company called Coastal Crusaders. What's one of the things that you do with Coastal Crusaders A project called Seated Surfing for people who can’t surf, and we're just for the disabled surfing Why can't they surf? Depends. Give me some examples. Paralysed, strokes And what about your Aloha Kakou surf club?
Do you want to talk about that? Surf club for for learning disabilities. And who set that up? Me. What does Aloha Kakou mean? Hello. Welcome. And inclusive and inclusion. It does, and why is it important to have a learning disability surf club, Aiden? Because there aren’t any, there aren’t any learning disability category in surfing.
So if you wanted to compete in surfing, there isn't, you can't compete at the moment because there wasn't a category that anybody with a learning disability, is there? So you're hoping that you can get some competitors, don’t train them too well, they might beat you. And then you can have surf competitions with other people that have a learning disability. Yeah. And hopefully that will happen all around the world. And then you can travel to. Yeah. Where do you want to travel to? Hawaii.
Have a surf competition in Hawaii. Or go back to Australia. That's an awesome goal, isn’t it? To aim for. Yeah. This video was produced by Discover Voices, part of Disability Cornwall and Isles of Scilly. To check out all of our content simply search Discover Voices on YouTube.