Autistic Spectrum Disorder family support with Sarah Hughes

Paul Shriever:

My name is Paul Shriever, and today I'll be talking to Sarah Hughes. Sarah studied at MSC, or Master of Science in Psychology. And her dissertation, or final assignment, was on eight autistic families who chose to wear the sunflower. Can you please tell us how you went about your study, and shared your findings with the Sunflower scheme, and the autistic families involved?

Sarah Hughes:

Yes, absolutely. So first of all just to give you a little bit of background about why I chose to study this in particular. I was in a Costa a couple of years ago and followed in a mother and son. It was quite busy, there was a lot of noise. The son was flailing his arms around a little bit. Made a few unusual noises. And it was clear to me that the mum felt very, very uncomfortable. She was very, very self-conscious. They sat down for about a minute, and then got up and left.

Sarah Hughes:

And I started to think, whilst studying, why that situation unfolded. And, was it a decision by the mum to take her son out of that situation because he was experiencing a sensory overload and just needed to get out of there? Or was it because she felt people were looking at her? I didn't notice people were looking at her. Was I looking at her? What had occurred in that space? And it was before the lanyards had started to be used. Obviously more than a million people are using them to help navigate their way around their day-to-day lives.

Sarah Hughes:

So I decided to interview parents within autistic families, find out about their experiences and the barriers to going around their, just conducting their everyday life. Popping to the shops; going to the doctors; posting a letter; whatever it might be. And to try and look at what it is that's causing some of the problems, and how the lanyards are helping to overcome some of those challenges. So, it occurred to me that even subtle responses from the public can have a negative effect on an autistic family.

Sarah Hughes:

The research that I did, I interviewed eight parents of children with autism, both in mainstream and special school settings. Some were verbal, some were non-verbal, all boys aged between five and 15. And I asked them about incidents that had occurred where they or their child had become distressed in a public setting, and how they felt about when that happened, and whether they had limited their activity as a family as a result. And then I asked them about the sort of support that they'd had by using the lanyards, how they found out about them, and whether they'd have support just from staff in shops and public places, leisure facilities.

Sarah Hughes:

Or whether it had affected, or changed, their engagement at a more public level, so from the community. Because, I believe that even small responses can affect the outcome of a situation. And I think that with ASD children's difficulties in interacting that can cause awkwardness sometimes, when members of the public engaged with an autistic family. So what I found is that there are three interrelating processes, with a psychological hat on. One is, and they all interact and interlink with one another. So let's say you're in a supermarket, your child has a meltdown, and you feel members of the public are watching you, looking at you disapprovingly, perhaps, maybe someone tuts at you. Maybe someone says, "Oh, what a brat." You know, these situations appear to occur quite frequently. And certainly with the families that I spoke to, that was something that was a real challenge for them.

Paul Shriever:

Sarah, how did you find the families? Where did you find them?

Sarah Hughes:

Well, it was quite difficult actually due to COVID. I was working as a TA in a special school, and the school very kindly offered to give me access to their parents. But just before the research started, we went into lockdown and I was very conscious that autistic families would be under increased pressure at that time, because their children weren't at school. So I relied on the school to decide when was the appropriate time to reach out to parents. But I also posted on social media, and local child psychology practice also contacted some of their clients to ask them to take part. I think also it, we did have a post on the hidden disability, sunflower lanyards, Facebook group, which I'm a part of.

Paul Shriever:

Right. Is that, Sarah, is that how you heard of the Hidden Disability Sunflower? How did that, how did you find out about?

Sarah Hughes:

A friend shared something on Facebook a year or two ago, about a story about a mom who had used the lanyards to be able to take her on an airplane. And it just touched me at the time and thought it was such a fantastic scheme. Alerting people is like a mental token that to give the child the family more space, but also offers of help and encouragement really. So, yes the first aspect is this confused social engagement. And the parents seem to experience almost malaise from members of the public. And I think it's probably driven by, if you don't have an autistic family, if a child, family member, or you haven't been exposed to somebody who has autistic traits, you don't really know how to respond. And the immediate reaction is to back away and almost ignore people. So that was pretty unpleasant, and there were some pretty unpleasant experiences talked about by the families.

Sarah Hughes:

The second one is, it's called ontological invalidation, but it's basically what would parents take away from those sorts of situations? They feel a lack of value. Perceived lack of value from other people because of the situation that's occurred. It could be really subtle. I mean, some of the parents made comments like, you can tell it's just in their eyes, you can see it in their eyes that they're disapproving of my child, because he's struggling with the sensory aspects of being out and about in noisy places, busy places, loud places. And some of, they also talked about when situations do occur and their child is struggling and may be having a meltdown. They really need to focus on what's happening with their child at that moment in time, they really don't need to be bothering about what members of the public are thinking or not thinking, and that can actually drain their ability to deal with the situation properly.

Sarah Hughes:

So their ability, that they're dealing with the situation maybe to ignore it. But then members of the public might think they're therefore allowing bad behavior. They may need to restrain, or they may just need to get out the shot. There's a hundred different ways that families choose to cope with this situation. The final bit is when families experience awkwardness from other people, when they come away and potentially take some of the internalized, some of those feelings, it can affect their decision making in the future in terms of what they do and don't do.

Sarah Hughes:

So, a number of families that I spoke to talked about really limiting what they do with their children. Maybe preferring to leave their child at home. Only going to places where they feel, maybe staff know the child and can help sort of foster, encourage, support in the right way. And this, you know, there's a tendency to withdraw, and this was a huge problem for the families because, we all have to go about our daily lives. But also for the child, because the less they're exposed to not loud noises and over sensory things, but the less they've got the opportunity to engage with people, the harder they may find it in the future to develop those strengths and those skills so needed in life today.

Sarah Hughes:

So yeah, that's sort of where we got to, and then we talked about the lanyards and the things that the lanyards unlocked for them as a family. So all the families I spoke to, they wear the lanyards every time they go out. Some of them have created little, they pimped up the land yards and put a PEX card in the back to help the child communicate, whether they want to go to the toilet, or others have obviously put contact details in there in case their child were to bolt out of the shop. There's contact information on there as well. And they said that the main sort of three things that the lanyards enabled was, that they might not need to ask for help in the future. Because the lanyards give a mental token that perhaps they will need help and could do with some supportive encouragement.

Sarah Hughes:

There'll be fewer tuts, fewer comments of, "That child's a brat." They won't need to explain. The other issue that a lot of them had was that they felt they needed to explain the behavior of their children to people. And none of them wanted to do that. They didn't want to say, "Look, it's okay. He can't talk back to you. Well, he can't communicate verbally in that way, but please carry on speaking to my child."

Sarah Hughes:

Lots of people wanted their children to have opportunities to maybe buy something in a shop, or if somebody spoke to them and the child was unable to respond with words, the parents still wanted to encourage that person to try to continue to try to engage, really valuable experiences for the child. Rather than maybe the person member of the public sort of looking a little bit oddly when they don't get a verbal reply. The expected reply. So that was just really, really powerful things. And I think that if we can make small changes to our environment, we can create a, not better, a greater sense of hope that autistic families will be able to go about their daily lives and get a better, more enriching experience when they do. So there'll be fewer distressing situations and more empowering situations for the family.

Paul Shriever:

Sarah, did you find the same sort of thread of findings across all eight families?

Sarah Hughes:

Yes. Yeah. Very, very strongly. Yeah. And even where different regions of the country, the lanyards seem to have slightly different level of understanding. Even people that were living in areas where the lanyards hadn't been as recognized as they had hoped them to be, they still religiously wear them. Because they want the best for their children. And if that means that on this particular trip, somebody recognizes the lanyard and then adjust their behavior accordingly, rather than expecting the child to adjust their behavior. It's that sense of hope that we, that was really the title of the report, that the lanyards are a symbol of hope for families. And as they grow in awareness, the understanding from members of the public will increase as well. And I think that just creates a much more inclusive community around autistic families.

Paul Shriever:

Sarah, did all of the families know about the sunflower?

Sarah Hughes:

Yes. Yes. That was a prerequisite of the selecting participants for the research that, I really wanted to speak to people that had already were actively using the lanyards. One dad actually said that he doesn't wear it as his, his son doesn't wear it as a lanyard around his neck, that dad actually wears it on his belt. Or has it in his wallet. So if the situation is about to unfold, it comes out. Everybody else were using it as the lanyards. But the special school that I work at, quite a lot of the teenagers wear the badge. And it almost seems like an identity, as part of their identity. And I thought that was really lovely thing to see amongst older children who recognize the lanyards for themselves rather than it's something that the parents probably deciding to use.

Paul Shriever:

Sarah, that for me is fantastic. Even if it just does that alone, it's worth doing isn't it?

Sarah Hughes:

Yes.

Paul Shriever:

If it gives people that sense of a little bit of comfort and makes you feel a little bit more reassured, then it's what is worth it isn't it? That alone.

Sarah Hughes:

A hundred percent. Yeah, a hundred percent.

Paul Shriever:

You said you work at a school for children with conditions?

Sarah Hughes:

I'm an assistant psychologist now. So I go into schools and do observations as part of autism assessments. And I've worked with a couple of children, teenagers, who are doing one-to-one support, who are having difficulties at school. So there was one lady who said that she took her son into a park, and she was trying to get him to queue for the slide. But he couldn't comprehend why or what was being asked of him. So he started to have a meltdown and there were other mums in the park. Please, excuse the cat in the background. And they were tutting, and staring at her and she felt so uncomfortable that she left the park. And she says now that we, she's actually got a younger son as well, we do go to the park, but we don't always go in. It depends if there's anybody else in there. And if there's somebody else in there, we won't go into the park. So that's a really powerful one.

Sarah Hughes:

Then there was another lady who talked about her son bolted out of the super market. And she had a smaller younger child in a pram, buggy. So she couldn't chase after him. Yet at loads of people were watching this happen. And she said, it sort of slow motion. You can imagine it. She said, "Literally people were just standing, stopping and staring, watching him go." And she chucked out the supermarket, run down the side of the road and he was running towards the main road. And it was only when she screamed stop, that he stopped on the curb. But she felt that, if he was, let's say he had a normal gait and he was running like a neuro typical child, not a neuro diverse child perhaps, maybe he was making some noises as he was going, nobody intervened.

Sarah Hughes:

Whereas if that was a normal seven year old boy, running on his own, someone would grab him and say, "Hey, what are you doing? You okay?" But that it didn't happen. And those two were the most shocking bits of what was said. And again, the way the mum going home and internalising all that happened, and then deciding I'm not going to take the kids out again, they're going to just stay at home the whole time. And then imagine the child only at being at home. They get no exposure to life. How can they integrate?

Sarah Hughes:

Often it's not conscious reactions by people. People don't realize the impact that they're having on autistic families. And the lanyard just takes that issue out of the equation. And it's a really clever way of stopping people judging. They stop and think, they stop and think in their tracks. And I know that the lanyard itself was probably designed for staff really. I mean, all of the parents talked about going through airports, for example, and that is, that's just been a huge, hugely successful aspect of the lanyards. And that's, I think where it started. But I think now as usage evolves, I think there's a much bigger societal change that can be brought about because of them, which is fantastic.