Barry Carpenter – Girls and Autism

Transcript

00:00:05.201 – Alis

In these short podcast clips, we offer nuggets of information from our longer podcasts that give advice and quick tips to help you, as teachers, recognize children’s needs and respond more efficiently, empowering you to adapt teaching effectively. Barry Carpenter is the UK’s first professor in Mental Health and Education, and his honorary professor at universities in the UK, Ireland, Germany, and Australia. In July 2020, he was awarded the Distinguished Fellowship of the Chartered College of Teaching for his leadership of the education field during the pandemic. He’s been awarded an OBE and a CBE by the late Queen for services to children with special educational needs. In this nugget, we discuss girls with autism, the signs we can be looking for in girls in our classes that will help us to notice specific needs and ideas on what we can do as teachers to support girls with autism. All too often, girls with autism become excellent at masking their differences and challenges, especially at primary school, only to struggle alone during the teen years. Barry talks about ways that we can recognize and respond early in order to make an important and lasting difference. You’ve also written and co-authored a book about girls with autism, so a little bit of a tangent off of what we were talking about there. Could you tell us a bit about that? What led you to getting involved and interested in this area?

00:01:50.181 – Barry

Yeah. So, autism has been a major platform for my career. It’s been the focus of one or two of the professorships that I held. It’s been a major part of my work, whether it be as a head teacher, whether it be as an academic. It’s an area that I’m passionate about. What became very obvious, probably from the mid 2000s onwards, was that we were missing a lot of girls with autism. I have to give some credit to my youngest daughter, Grace, for the insight she gave me that really helped me to deeply understand how we were missing these girls. Grace is an occupational therapist by background, but specializing in child mental health. She would come home and tell us about girls that she had seen who’d been referred for eating disorders or self-harm. But when she began to peel that back, the underlying issue was undiagnosed autism. And yet these children then were 14 and 15. Why have we missed it? So by then, they had to deal with not only their autism, but a mental health issue as well, which was going to really affect their developmental trajectory. Why was all of that happening? It’s because the girls were masking and camouflaging. They’re great imitators, they’re great mimickers. So the girl with autism would be listening to the conversations of her peer group who were talking, let’s say, about boy bands. And the next day she’d be able to say, ‘Oh, this group is my favourite boy band’. And she could tell you lots about that boy band. In fact, if you let her carry on for the next 2 hours, she wouldn’t stop because she’d have so much detail, including inside leg measurements of each of the members of the boy band. It was just prolific. But she did that because she wanted to be seen to be the same as the other girls. But of course, in adolescence, all of that begins to unravel because whereas they contained their autism and made themselves seem like the other girls during the primary years, in adolescence, with all of that hormonal raging, Keeping it in was impossible, and they began to fall apart. And I realized that we needed a piece of work around this. And at that time, NASEN, the National Association of Special Educational Needs, invited me to chair a group that they had come to the same conclusion, we needed to look at girls with autism. So I began to chair this group, and eventually it grew so exponentially that National Association of

Head Teachers agreed to host the group because as you well know, again, from your own experience, unless we change the hearts and minds of school leaders, we’re going to get nowhere. I, for two, three years, chaired this group, and they were a fantastic group of people. Women with autism, head teacher of Limsfield Grange, Sarah Wild, which is the only state school for girls with autism, people as eminent as Professor Francesca Happè, who eventually co-authored the book with me. All sorts of people that had rich experiences, Sarah Jane Kirchley from Autism Education Trust, Cary Grant, the TV presenter, who is the mother of daughters with autism. So lots of multiple perspectives on this. And during the course of the campaign we had and the work we were doing, we produced a pamphlet. Eventually, I just turned to the group and said, We need to write a book. Well, many of them had never been authors. And so we set up a system where they could be coached and mentored into writing. And so it was a big piece of work. And the book was a real labour of love, but a very purposeful one. So you have some great scientific chapters, but equally, you have a mother or mothers telling the story of raising their daughters, or indeed, women with autism, talking about what it was like to be a girl with autism in the school system.

00:06:26.571 – Alis

I’ve got a couple of questions around that. Why do girls with autism respond differently to boys? That’s one thing that is of interest. But also, as a teacher and a parent, what are the signs that you would look for in a girl that you might not look for in a boy that might tell you, actually, they’re having trouble here and you could support them?

00:06:52.561 – Barry

Let me start with that first question then. It’s down to the social biology of the brain. I don’t need I can tell you that men are different. The male brain is different. It just is. And women, I’m generalizing, but I hope not offensively generalizing, women are naturally more social creatures than men. And therefore, a girl with autism is a girl first, which is why we called the book Girls and Autism. I mean, though it was a movement because of the people first approach, which I very much support, that we should have called the book Autistic Girls. But the issue, the problem, as it was, is the fact that they were girls. Their feminine traits were masking and camouflaging what was going on underneath. So parents, when they’re thinking about their daughters… I’ll give an example. A woman in the village I live in stopped me a couple of years ago, and she knew me from some children’s activities we’d done in the village. And she said, ‘I’ve heard you talk about girls in autism with other people. My daughter’s adolescent now, and suddenly she won’t comb her hair, her Personal hygiene is awful. She won’t change her clothes. She’s become very faddish about her foods’. Any one of those things on their own, you could just put down to adolescence, you start to get a combination of them, then in this mother, the alarm bells are going off, and rightly so. Let’s just say, subsequently, the girl has had a diagnosis of autism. But what I’m trying to say there is the starting point for personal hygiene. You’d never think normally of starting a diagnosis for personal hygiene. That’s one of the indicators.

00:08:48.501 – Alis

That’s good to know. What about younger girls? I’m thinking primary. How would you nip that in the bud, if you like? What are the signs before they get to adolescence and start to struggle? Or are there none?

00:09:05.601 – Barry

Well, that’s a good question. No, there are signs, but it’s a very good question because I can’t fully answer it because the research study to answer that is currently happening. I’m supervising my last PhD student who is looking at that very question because when we’d finish the book, Alis, And it’s been the most successful special needs book for the last four consecutive years.

00:09:38.441 – Alis

Well done. Amazing.

00:09:40.301 – Barry

It’s had a huge impact internationally, and I’ve been around the world, from Dubai to New York to Sydney to Auckland to launch it. But for me, the question that we hadn’t answered but I don’t think we’d even asked the question because there were so many questions to ask, because it wasn’t a complete holistic piece, you know? We had fragments and they needed cohering. But for me, I just asked myself this question, why did I miss it? Why did those girls have to get to 13, 14, 15 and lose good quality mental health? Why? Because those were little girls of 3, 4, and 5. Why did I miss it? What did my teacher eyes not let me see? And the indicators of early childhood autism in girls is different again to adolescent indicators, because I’ve talked about eating disorders and self-harming. You don’t really get that in little children, nor do you get some of those things in boys. The little girl of 3, 4, 5 is not as loud and out there as the boy of 3, 4, and 5 with autism, who is probably already showing some disturbed and disturbing behaviours. I’ve done a preliminary piece of work, not necessarily published, but I’ve done a comparative study in three countries, where I’ve asked teachers, where you’ve had a girl with autism or you’ve had a girl that you think should be referred because you suspect autism, what did you see? They said things like, the girl would play, say, with the dolls, say, a horse and a toy doll, and even when other children came to play alongside her, if they asked if they could now play with that toy, she would often let them play with that toy. So again, stick with that image of the horse and sitting a doll on top of the horse. Except, if the other child then placed the doll on the horse facing the wrong way, the end of the world would come. The girl with autism, question mark, would lose it. The teachers then said, when they say, as teachers of young children do, ‘Children, it’s time for story. Come and sit on the carpet in front of me,’ the little girl with autism would come but she always sat on the edge of the group. If the teacher said, ‘Oh, why don’t you come and share the story with me today with the rest of the class? Come and sit by me’. Then the meltdown would come. The demand was too much socially for her. So there are indicators, but if you just take both of those scenarios, A, the child was compliant and came to sit on the carpet for story time, so where’s the problem? There isn’t one. And if you looked across, as a busy teacher in that earlier setting, you looked across, oh, yes, she’s playing alongside other children appropriately with the dolls. Where’s the problem? In that busy classroom, let’s be honest, you’re not going to pick up nuances. So

can you see already the masking, camouflaging and because they’re more compliant, frankly, is obliterating your ability to bring out an understanding of their profile of need. So we need to change the lens. We’re working on a profile, not a diagnosis, but a profile tool that teachers could use, therapists could use to start to collect information where… And again, you will know, but sometimes some of our best responses are gut reactions. That’s not quite right with that child. And you start to look more, don’t you? Yeah.

00:13:54.801 – Alis

Is there something around the setup, the way we do education, especially in the UK, that almost feeds that compliance, feeds that ability for the girls to be able to mask? Because we’re actually, as you say, we give a directive, the child follows it, there’s a tick. If there’s a boy that’s kicking off, then we don’t come back to look at the girl that’s sitting on the edge of the carpet. As teachers, our minds are taken up with the non-compliance. So I’m just wondering, is there something different that teachers could do in their class routines and processes that might actually rattle rather than just feed the ‘This is what we do at nine o’clock. This is what we do at quarter past. Come and sit here, hang your coat up here, put your shoes there,’ which is all one compliant behaviour after another.

00:14:59.081 – Barry

That is a massive, huge question because it’s going to demand total reform of the education system to give you an honest answer to that.

00:15:12.451 – Alis

You’ve got time for that, haven’t you?

00:15:14.371 – Barry

No. What I could say could be very contentious. I’m just going to take it back a little bit because some of the difficulty for teachers will be the rigidity of our curriculum, the rigidity of our system, the Ofsted fear that thankfully at last, but tragically because of Ruth Perry’s death, has been exposed. But we’ve got an Ofsted-driven school system. People dance the tune because we live in fear. It’s not a good healthy state for teachers, and it’s certainly, therefore, not a good healthy state for children. I think my answer in brief would be, if we look at some of our contemporaries in other countries, they have far more play-based learning for those very early years, right through to the age of seven. I mean, the Finns, who consistently top tables in the international league tables, do not begin formal education until seven. It doesn’t say the children don’t read before they’re seven, but it’s done in a very play-based, not pressurized role. I mean, I have a grandson of four who the head teacher is thrilled to tell his parents he’s got all of his initial sounds and some blends after one term in school. Well, that’s great, but I’m not sure that would be the major priority for a child who’s actually still socially quite withdrawn.

00:16:50.761 – Alis

I wonder, and I don’t know if this is part of your PhD students’ research, is what does that identification earlier on of girls with autism look like in other education systems? Those play-based systems, for example. Can you see a little bit earlier on what you need to be able to see? Because there is that sense of creative play, that sense of choice making, the slightly lighter control.

00:17:25.641 – Barry

I can see where you’re going with that question, and therefore you think it’s probably going to be a stunning answer from somewhere else in the world. I’m now going to be completely contradictory again, because believe it or not, our thinking about the education of children with autism is probably the best in the world. So in consequence, Other systems are not even asking these questions. The book has been translated into several languages, and the demand to speak internationally is still very great. I’m just back from the international conference in the States, where everybody thinks it’s the Mecca of autism. And yes, there’s some fantastic research coming out. But the whole question of female autism is still like, ‘really?’ They haven’t gone into the depth of thinking we’ve gone into. So we do some things very well in this country and thinking about children is still a great strength. How we do it when I consider the constraints our system is under, I don’t know, but we do. I still think British teaching is some of the best in the world. You just do wonder, though, if we didn’t have all of these constraints and frankly, the wretchedness of Ofsted, would we be in a very different place again?

00:18:55.621 – Alis

I hope you enjoyed that Nip in the Bud nugget. If you want more, why not go back and listen to the whole episode with my guest? If you enjoyed this episode, please share it with others and visit our website for more information, advice, and resources.