What is PDA?

Episode 7 PDA

Join us as we share the ups, the downs, and everything in between parenting autistic children.

Natalie Tealdi: Today we're going to talk about PDA and the unique challenges that come with parenting a child with a PDA profile.

Victoria Bennion: Can you explain what PDA is and your experience of it

please, Natalie?

. We have been told that our son has a PDA profile, but they don't. Diagnose it so it's not written down.

Victoria Bennion: What were the early signs of PDA that you noticed in your son?

Natalie Tealdi: It's flat out refusal to do things, even something that he enjoys or he wants to do. He would refuse to do it. And that was really hard to understand because we're saying, oh, do you want to go to the park? Let's go to the park. Something he loves, but he's like, no, getting really, you know, just cannot cope with that.

We needed to do lots of research to try and understand where that was coming from.

Or clean your teeth, we have to approach it like it might be a good idea to put your shoes on now, or would you like to clean your teeth before we do stories or after? So it's giving him choices, making him feel like he has some control, even though you're getting what you want at the end of it.

Victoria Bennion: We have to do that too. One of the strategies that I find works quite well is you need to have a shower today. When would you like to have a shower? Would you like to have one now? Would you like to have one before you go to bed? So there's option.

Victoria Bennion: Absolutely. So what other strategies have you found useful when you're supporting your son with avoidant behaviors?

Natalie Tealdi: We always give him like plenty of notice, if we're going out for the day, so the day before we'll tell him what we're doing the next day. Particularly for the weekends, we'll show him pictures of where we're going. Those visuals can be. Really important. They seem like such a simple thing, but they really do seem to immediately relieve any anxiety and stress.

You can almost see the physical reaction when you put a timetable in front of them. Certainly for us anyway I. And then, so we'll remind him again in the morning. And then just give him plenty of time to get ready and allow extra time for putting on shoes, getting to the car, that kind of thing.

I think they call it low demand parenting. Anything that isn't essential for the day, just let it go. Concentrate on what absolutely has to get done.

One of the things we struggle with a lot is food choices, particularly breakfast time. So first thing in the morning, he often can't choose what he wants, so we'll present two choices. So he has an option. If we are met with silence, I'll make a decision and hope that he eats it.

Sometimes it works, sometimes it doesn't.

Victoria Bennion: My son says he can't make choices. He needs an awful lot of support. To make a choice because there's so much anxiety around choosing the wrong thing.

, if it symbols choosing between one person and another to do something with, then he's gonna have that added pressure, that he's gonna hurt someone's feelings. And it absolutely paralyzes him to the point that he won't make a choice and he'll end up doing nothing rather than something.

His response is to shut down. That's what happens if he gets too many choices and he's overwhelmed.

It's very tricky. I would say we found no more than two choices, and as you were saying, lots of warning about the choice that's coming up and support with making that choice.

I think it's very sensory with the smells. and just he likes to zone out when he eats, so he likes to eat in front of the tv. That's how he's most relaxed and that's when he's most likely to eat. So we've given up on

that.

Victoria Bennion: That's where they're similar., it makes me smile when you say that because all these things, I think after a while you automatically do a lot of them these changes like eating at the table, my son doesn't eat at the table. We took that away early on for the reasons that you've said.

Natalie Tealdi: we always make sure there's, there is a place for him and he's aware of it and there's the odd occasion where he'll be like, I'll come and sit with you. And that just makes it all the more special when it does happen because it's coming from him, it's his choice and, you just appreciate it more.

Natalie Tealdi: making him feel like he's in control, giving the choices, but also softening things.

So asking him, how do you feel about dot, dot, dot. Have you thought about dot, dot dot or would you like to do this first or this?

All those sorts of things. So it, it's not like, are going here and we are doing this.

Grab your bag, grab your coat, off we go. 'cause then immediately he would be like, oh

Victoria Bennion: So many demands.

Natalie Tealdi: That's why mainstream school doesn't suit him because there's so many instructions. Like children come and put your bags away. Sit down, be quiet.

He would be like, whoa.

You know?

Natalie Tealdi: Yeah, and also I think like it's such learning curve at the beginning when you don't understand, but once you do a little bit of research and you start implementing a few of these little tips, it then becomes automatic and then you don't realize you're really doing it all the time because it is just so automatic.

Victoria Bennion: I remember when my son was at mainstream school and he was being observed by an autism specialist in the classroom, and the specialist included in the report that she wrote up afterwards, how my son's teacher, who was also the senco and knowledgeable. About PDA had approached getting him to take his gloves off.

He was very anxious at this time. And , as she walked away, she just said, gloves off so you can type with a questioning tone, you know, rather than a command. If she'd given him this is a firm instruction, he would probably have frozen and not done it.

Natalie Tealdi: Exactly. It wouldn't have worked, would it?

Victoria Bennion: it

was

new

to me

Natalie Tealdi: Yeah. That's very clever. Just that small little comment, but no eye contact, just as you're casually walking by and it's, yeah, it thought in their head more than it becomes an instruction really.

Victoria Bennion: Do you find that your son is ever misunderstood in terms of the PDA

profile? Oh yes, because it can look for those without knowledge, it could just look like they're being really rude and that you are being a really bad parent because you can't control your child.

Natalie Tealdi: even, close family members would be like. Whoa. they're not doing a very good job.

Not that they actually came out and said that, but that's how it can feel sometimes. because to them, your child's just refusing and being rude.

Victoria Bennion: And I suppose it can look like you are pandering to bad behavior.

We have no sense of discipline.

Victoria Bennion: How have you dealt with that?

Natalie Tealdi: with the people who in our lives that matter, we explain. This is what this is. This is how he's feeling. This is why he's behaving as he is, and this is what we are doing to support him. Sometimes they'll get it great if they don't get it. I'm not worried because I'm focusing on my child and his needs, and anyone who doesn't matter, I just ignore them because they don't understand and It's part of the reason we're doing this podcast, isn't it really to raise awareness? Because it would be good if there was more understanding out there, it would make our lives a lot easier. we wouldn't feel that sort of extra stress from outside influences when you are already dealing with a stressful situation yourself.

Natalie Tealdi: It's really tricky because we kind of have different rules for different siblings in a way. our daughter does sit at the table with us for meals and we try not to. Not let her sit at the table, but obviously you have to have some flexibility because she's seeing her brother sit in front of the tv and it may end up that she wants to sit in front of the TV too, and we probably have to let her do that because you can't really have one rule for one and one rule for the other.

but for now, we sort of explained to her that he struggles with that. and that's why he sits there. But sometimes he'll come and sit with us and for now she's accepting of that. But we'll see how it goes. there's things like we let her have her iPad at the table because her brother is watching his iPad or watching the tv.

Victoria Bennion: Yeah, food is a whole separate episode, but certainly for my son, he needs a screen to eat so he's not focusing on his food.

What types of support or resources have you found the most helpful when you're navigating PDA?

Natalie Tealdi: the PDA Society has a website which is really helpful. So there's lots of information and support there. and we've done a lot of reading around the subject. Dr. Naomi Fisher is one that we go to. She has um, online. Webinars you can pay to watch when she gives some really good tips and advice about PDA behaviors.

and then, just gen generally. You can Google low demand parenting and get up a load of tips and just start following and implementing those little things. It's just small little changes, but they do have a bigger impact.

Victoria Bennion: Do you have any advice to offer for parents who are just beginning to understand PDA and maybe their child is struggling?

I'd let go of anything that isn't absolutely necessary in your day. And sometimes that can actually be really difficult because it can be something that you yourself really want to do. So as an example, in the holidays, I really wanted to take my son to the cinema, and it's something that he really struggles with.

He doesn't like it, but I'd found a film that I really thought he would love. and we talked about it. Several days before I showed him pictures of the cinema, I showed him a trailer of the film. So

I did everything right, followed all, all my tips, and then when it came to actually leaving, he could not bring himself to go.

And I was disappointed because I'd been really looking forward to doing it. But it's just a case of you have to put them first and what they can cope with, and it was the right thing to do for him was to stay home that day. He didn't cope with anything much that day. It just wasn't the right day for him.

Natalie Tealdi: Exactly.

Victoria Bennion: it.

Natalie Tealdi: Yeah. Yeah. And we also had that on the weekend as well. We'd arranged to go and meet my mother-in-law at the park. And we told him the day before we're all set to go. I'd packed the car up, shown him pictures of everything, put my daughter in the car even. And then my son was nowhere to be seen.

We're like, where is he hiding in his room? I'm not coming. So that took a lot of unpicking and. there's stress involved 'cause we're aware there's family members at the park waiting for us. It's just under an hour's drive away. and you're thinking about what are they gonna think? We're gonna be late or we're not coming at all.

And then once he was feeling calm and we'd taken the pressure off and said, look. If it's not gonna work today, it's not gonna work today, but this is your last opportunity to see this family member before they go back home, which is quite far away. So we had time to think about it and we did end up going, but we were an hour and a half late.

Victoria Bennion: That's a win that you got

there.

Natalie Tealdi: absolutely.

Victoria Bennion: How was he? Did he enjoy it

Natalie Tealdi: He loved it when we were there. He absolutely loved it.

Victoria Bennion: Excellent.

Natalie Tealdi: We hope this episode has helped to shed light on the journey of parenting a child with a PDA profile

Victoria Bennion: yeah, we are sending so much love and encouragement to every parent walking this path. You are not alone.

Until next time, take care.