Episode 8 - TAM - Helping Your Autistic Child with Anxiety

[00:00:00] Hello and welcome to the Autism Mums podcast. I'm Victoria. And I'm Natalie. We are two sisters raising autistic children who know the joy, the challenges, and the everyday moments. This is a supportive space for honest conversations, practical tips, shared strength and expert advice. Whether you are celebrating a win, surviving a meltdown, or just trying to make it through the day, we are right here with you.

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

Victoria Bennion: Hello and welcome back i'm Victoria and I'm here with my sister Natalie. And today we're gonna talk about a topic that so many parents of autistic children will relate to. Anxiety. Anxiety is incredibly common among autistic children, and yet it can often be misunderstood because it shows up in so many different ways.

In this episode, we'll be opening up about our own experiences with our boys [00:01:00] and talking through what anxiety can look like from meltdowns and shutdowns to avoidance and the physical symptoms. Then we'll share what we've put in place that's really helped our children.

Whether you are just starting this journey or you are well down the path, we hope that this episode offers insight, encouragement, and a reminder that you're not alone. Okay, let's get started.

I read that approximately 40% of autistic children also suffer with anxiety.

Natalie Tealdi: Wow.

Victoria Bennion: It's definitely been one of our major concerns with our son.

Natalie Tealdi: so what does anxiety look like in autistic children?

Victoria Bennion: It displays in very different ways, and it's going to vary between children. I'm thinking of just our boys, how their anxiety displays. There's a lot of crossover, but there's differences as well. I would firstly say meltdowns or shutdowns there's been a couple of examples at school, and he's completely shut down.[00:02:00]

And when I say completely shut down, that usually for him, will mean lying on the floor, non-responsive, unable to speak, unable to move. And triggers for that have been fear over a lesson, could be a new lesson on a timetable or a fear of what's that's going to look like. When he was at first school and he had a shutdown, they weren't sure if he passed out.

And it was the pediatricians who explained that it was an autistic shutdown where he's. Overloaded and can't communicate.

Natalie Tealdi: It's like they retreat into themselves, isn't it?

Victoria Bennion: It is another ways anxiety can present itself with autistic children is an increase in repetitive behaviors. Do you find that at all with your son?

Natalie Tealdi: Oh my goodness. Yes. When our son was in mainstream school, he. Had this kind of ritual that he did every morning. He'd have to fill the [00:03:00] sink to a certain height in the bathroom and nobody was allowed to touch that water. It had to be at that height for the whole day.

Yeah. So that was like his anxiety behaviors. He becomes quite controlling over things,

Victoria Bennion: I remember that. Okay. Let's talk about avoidance. That's definitely. My son's biggest one, so I'm not going anywhere and that's usually I'm not leaving my room, so retreat and avoid going to see people going to certain places. Anything that's feeling really scary or overwhelming, we're just

gonna avoid.

Natalie Tealdi: We have that too.

Victoria Bennion: Tummy Aches. So presenting as physical symptoms. We have a lot of feeling sick and we have a lot of aches and pains when we're really anxious. And for a while I thought that he was ill because he looked terrible. But it was the anxiety

So anger is another [00:04:00] way that you may see anxiety coming out.

Natalie Tealdi: Our son experiences anger quite outwardly, so he will screech and shout or make animals sort of noises.

Victoria Bennion: My son has trouble sleeping.

Natalie Tealdi: , sleep has always been an issue for us. Our son gave up naps really early, I think by 18 months old. And it takes a good two hours to get to sleep at night. He needs somebody with him at night as well, so my husband actually sleeps in with our son 'cause he gets very anxious

to be

alone at night.

Victoria Bennion: Something I've noticed that my son does when he's anxious is that he asks lots of questions, repetitive questions that he may have already been given the answer to. So if we're going somewhere, when are we going, how long are we gonna be there? And you can answer them over and over and over again because he's looking for that reassurance.

Natalie Tealdi: Yeah.

Victoria Bennion: , my son doesn't do this now, but it's certainly something that he did when he was younger and that was masking. I would say that mask is [00:05:00] off now, but I think he held it all in certainly till about the age of seven. So he could seem fine at school and then come home, and that's when it all comes out, and I'm sure that that's what a lot of parents see.

Natalie Tealdi: And I think that can also make it really difficult for getting the assessment part of things because they can be seemingly okay at school, but actually really struggling at home. So it's really difficult to get that sort of input from the professionals because they're

not seeing the

same behaviors.

Victoria Bennion: Yeah, and there's a lot of guesswork because of the communication differences that our autistic children have. So my son, would often say that he was bored. He wouldn't say, I feel anxious. He say, I feel bored. And it took me a while to realize that I feel bored, means I'm really worried about something or I've got a problem with something.

Only In the last few months since he's been at specialist school, he's done more work on this and had more support, [00:06:00] but he's able to say, if you suggest something, I feel really anxious about that and that feels like a massive breakthrough actually,

Natalie Tealdi: It is massive, isn't it? I think that is where specialist schools really come into it because they really help them explain things and feel okay about explaining it too. They just feel more comfortable

to be

able to voice it.

Victoria Bennion: For sure. My son had a lot of mindfulness sessions, in those mindfulness sessions, they explored what anxiety looks like within you, what's going on when you're getting these feelings, and I know all that work that they did with him has really helped him vocalize what's going on.

Natalie Tealdi: Yeah, that's really good.

Victoria Bennion: So I think we should talk about what are some common causes of anxiety in autistic children because it's.

A lot more than you think. Do you remember that program that was on television that Chris Packham did inside our autistic minds?

Natalie Tealdi: Yeah.

Victoria Bennion: the [00:07:00] part of that program that really stuck in my mind at the time, ' was the boy Ethan made a film.

He was really hypersensitive to noise, which my son is, and he made that video of what it was like going out and the dogs barking, and the unpredictability of that and the unpredictability of a baby crying and the effect that that had on him. And I saw things completely different like that really enabled me to see it through my son's eyes.

Natalie Tealdi: Yeah,

Victoria Bennion: Sensory overload can cause huge anxiety in autistic children. So it's not necessarily worrying about something.

It's the loud noises, the bright lights, the awful strong smells, the busyness.

Natalie Tealdi: And we now put things in place, don't we? We are like hyper aware almost of, I know if I'm about to make a coffee with our coffee machine that's really noisy, I announce it to everybody first. Coffee machine's going on, [00:08:00] just so that it's not unexpected but the kitchen is one of the worst places.

Extractor fans and all of that. When we go out, we'll always have sunglasses for the bright light. Or headphones ear defenders. Just everything in your toolbox basically, isn't it? Just to help them cope

if they need

it.

Victoria Bennion: Yes. And I think when the anxiety levels are at their highest, all these things are so much worse so , it's a changeable feat really. But we always have those. There was, a long period where my son couldn't cope with going into town. It's a challenge now. Not saying it's not difficult, but there were places that he was more comfortable to go out to when he was anxious.

Like the beach, which is near us. It's fairly quiet. And the Woods nature things where there's not gonna be so many, things that make him anxious.

Natalie Tealdi: It's really interesting how it can be different on different [00:09:00] days. Like I was going through my notes the other day from a couple of years ago when my son just couldn't bear to wear this t-shirt, this long sleeve t-shirt that he used to wear every day. Suddenly the sleeves were really annoying him around his wrists and.

That caused a big meltdown. And we tried pushing them up, but that was no, couldn't cope with that. He just could not wear them. And we had to find something different to wear. But that day it was really difficult for him to just wear clothes. Yeah, so it can be really like one day it can be fine the next day.

Those same

things can cause

real

difficulties.

Victoria Bennion: . Everything's more heightened. And I don't know if your son finds that, but I. Social challenges create anxiety. My son certainly said to me before, no more than two people, I can't cope with any more than two people. And I think it's working out those social cues , the unpredictability.

Natalie Tealdi: The fact he was able to explain that

to you,

That is [00:10:00] massive though, isn't it? Because maybe going back a couple of years, he would've just freaked out,

but you wouldn't have known why.

Victoria Bennion: He wouldn't have spoken, he'd have just held it all in. Social situations, and not knowing who's gonna be somewhere that that creates anxiety.

Natalie Tealdi: Yeah. Like If you bump into somebody out of context as well. So say see a school friend in a supermarket or something that could be really like, oh, I wasn't expecting them,

Victoria Bennion: last year, actually, we used to pick my son up, so he was at the alternative provision part of the specialist school, and we used to drive. To pick up my daughter and she was at middle school and we would park just in the roads nearby, waiting for her A number of his friends from first school would come out, friends who he would play online with, but he would want to hide.

It was just that unpredictability of who might be there, he would never know, and that caused huge anxiety

Other causes of anxiety that [00:11:00] I completely overlooked. For a good amount of time that didn't realize that they caused anxiety was changes in routine

Natalie Tealdi: We definitely have that. So much so that my, my son would like to go. to school, All year round and not have any holidays. Thank you very much because that's his routine and, and it's the same with being off sick, absolutely hates to miss a day. He can be feeling dreadful and still want to go because it's his routine

and that's what he

does every

day.

Victoria Bennion: yes, changing in routine is hard. Uh, we struggle more. When it's been the holidays and then it's getting back into that routine, or the most difficult thing is the change to a timetable. So if it's a new term and the timetable is different, that causes a lot of anxiety.

Just the fact that it been, well, I've been in the position where he's been unhappy about something on the timetable, so I've. Spoken to the school and I've explained and they've made these accommodations and we're all ready to go, and he's [00:12:00] then been really anxious because it's different, even though it's something that he wanted changed.

It doesn't make it easy to access it causes huge anxiety.

Natalie Tealdi: I think any changes can be really difficult to accept, can't

they?

Victoria Bennion: Yeah. Even if they're ones you wanted. How is your son over making mistakes?

Natalie Tealdi: Sticker books for our son were a nightmare because he would like them to be perfectly aligned. You know, You get those pepper pig ones that. Make the whole picture and you have to get the dress exactly right. And he wouldn't do it himself.

He'd refuse to do the sticker book, but he'd ask me to. And if I got it wrong, he'd have a massive meltdown if it was just slightly wonky because he needed them

to be exactly right.

Victoria Bennion: I see it a lot with my son in terms of learning. It's that I should know how to do it even though I've not been taught how [00:13:00] to do it. I can't possibly try and get it wrong because I can't be wrong,

Natalie Tealdi: There's this pressure that they should already know

everything.

Victoria Bennion: And this real anxiety about getting it wrong. I see it with my son with maths and maths is one of his favorite subjects, and he really likes it. But the thought of getting it wrong sometimes paralyzes him to not be able to access that lesson.

Natalie Tealdi: I guess it's just supporting them through that, you know, You get those gingerbread kits, the gingerbread houses that you can make. And I remember doing one of those with them and he was quite small. I think he was about four, and there's the picture on the box of how it should look with the icing all perfectly in the thing.

And again, he was getting upset because ours didn't look like the box. And I grabbed the icing tube and just went. All over it. Just to sort of say it. It's okay. Like it

doesn't

matter. well, I think At first he was a bit shocked,

Victoria Bennion: I, imagine he was.

Natalie Tealdi: I was just trying to make a bit of fun out of [00:14:00] it And I think kind of got it, but he still prefer

it to look like the box,

Victoria Bennion: When my son was at preschool, , he used to have huge anxiety about performances I remember he had to be a shepherd. I think it was a shepherd. We had a shepherd's costume, got him dressed. Every time we turned around, he'd taken it off I didn't realize what was going on at the time. It's trying to encourage him to do it, and we arrived late in the end with the costume.

And I said, I don't think he's gonna be able to do this. And the preschool staff were lovely they managed to get him changed. Took him round, held his hand, but he was just frozen on the stage and that was at three years old , he didn't do school performances. He didn't do sports days, even a class assembly. There's a lot of expectation

Natalie Tealdi: Massive. Yeah. So many people in one place. All the noises. kind of in close proximity to a lot of people as well in those performances. I

think it's

huge pressure for them, isn't it? But for a parent, that's the kind of the bits that you are [00:15:00] really looking forward to, isn't it going to see them in a play?

Oh, it's gonna be so lovely. It's

see them up on

stage. They're gonna look so

cute and then it

Victoria Bennion: That's it. You are the parent that's there without the child.

Natalie Tealdi: Yeah.

I don't think our son ever did one.

No. Just couldn't. No.

Victoria Bennion: And I think something else that you've touched upon actually that causes anxiety is that lack of control. Like I have to do this or nobody's listening. Our cousin works in a specialist school but in a different county. And she came up when we went out for the day and your son was struggling and she said, you really need to validate. When they feel powerless and not listened to, he needs to know that you hear him.

Natalie Tealdi: I try to make sure I really get down on their level and look at them and say, I hear you. I hear you, and it's okay. Just that bit of reassurance We've

got their backs basically.

Victoria Bennion: What

else can we do to help in these situations where our children are [00:16:00] really struggling with anxiety?

We've talked about being prepared, so carrying things like the ear defenders noise canceling earbud. We, we need sunglasses, we need fidget toys. If we're going to a busy place, like we went to Harry Potter in January, which was for his sister, essentially, and I really wasn't sure he'd be able to manage, but they have quiet spaces and they have a lot of things in place.

So knowing and letting the child know that there are these options, if you're going somewhere,

Natalie Tealdi: Yeah.

Victoria Bennion: you said, preparing visually for when you're going somewhere.

Natalie Tealdi: If you're going out for the day as well, I tend to like research the place we're going to For example, there's a local museum that we've been to and they have a quiet room, so I made sure I knew where that was, and that we could go there and access that if we needed to, just to give them a break.

Parking facilities, all of that. Some people have blue badges. That can be really helpful so you can park close. To the venue, and if you need to make a quick exit, you can [00:17:00] looking up if there's like discounts if you can't stay for the whole day, so then you're not shelling out

loads of money. , just like an hour.

Victoria Bennion: And as you said, letting them just choose not to do something if it's too much without making 'em feel bad about it.

Natalie Tealdi: And lowering expectations, like let's just go and see. Let's go and see what the outside looks like. If you want to go in, great. If you don't, fine,

Victoria Bennion: If anxiety's a lot around social, situations, if it's communication, you can talk about ways to communicate. , if someone says this to you, how can You answer? Because I know my son struggles to know what, what he should say.

He's a bit puzzled sometimes. What are they asking? And then. If he gives an answer that comes off a little bit of rude, he doesn't understand why

Natalie Tealdi: breathing techniques I think are good if they're open to learning that. I I had a book or a worksheet about a little breathing exercise you can do with little ones where you pretend you're driving a car and you take a deep breath in as it goes up and then down, and then take a deep breath in and then [00:18:00] out all along the hand.

It can be quite a nice little game for younger ones

Victoria Bennion: We've really talked about that, but the need for you to be calm and you to be patient as much

as you can and give

them time.

Natalie Tealdi: And it's not always easy.

Victoria Bennion: No, it's not always easy,

but give them time to process and time to understand what you're saying and to give the answer. Lots of advanced notice using the visual timetables and planners can be really helpful or just looking it up, and affirming who they are. It's okay because they're likely feeling really bad about this anxiety. Anyway, I remember someone said to me when. My son was really having trouble accessing mainstream school.

She was really well-meaning, but she said he really doesn't want to be here, does he? And I said, no but he does. And that's what's so hard, so affirming that they're okay as they are, and you understand the struggle. It's that want to but [00:19:00] can't. And I think that really has to be acknowledged.

Natalie Tealdi: definitely.

Victoria Bennion: If they've got a huge fear of making mistakes, try to emphasize that it's okay.

It doesn't have to be perfect and demonstrate that which is what you did.

Natalie Tealdi: just don't do

Sticker books

Victoria Bennion: don't do sticker books

We know that anxiety can be one of the most challenging parts of raising an autistic child and that every child is different. There's definitely no one size fits all approach here, but we hope that you will have found something useful in this episode.

Thanks for joining us today on the Autism Mums Podcast. We hope you have found a little support, a little solidarity, and a reminder that you are not in this alone. If you enjoyed the episode, we'd love it if you'd follow the show and share it with another parent or carer who might need to hear it. And if you've got a story or a moment you'd like to share, we'd love to hear from you at [00:20:00] www.theautismmums.com.

Until next time, take care.