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Supporting Autistic teenagers through adolescence

2 May 2024

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Host Madeleine Lobsey (Wondiverse) recently welcomed Benison O’Reilly (co-author of Australian Autism Handbook) on the Aspect podcast series 'a different brilliant'.

Together they explored how to support Autistic teenagers through adolescence, offering advice on aiding their social interactions and friendships and addressing common puberty and mental health challenges to help parents provide comprehensive support during these transformative years. The podcast is available on all major podcast apps including Apple Podcasts and Spotify.

Alternatively, you can read the transcript below!

Podcast transcript

Welcome to A Different Brilliant. I'm your host, Madeleine Jane Lobsey, and I am really genuinely thrilled to be joined by the extraordinary Benison O'Reilly. So let me tell you a little bit about Benison. Benison is a talented author and medical writer, and they are best known for the bestselling book,the Australian Autism Handbook, which they co -wrote with Seana Smith. And the book recently, last year, had a completely updated version of it to support the current new generation of autistic Australians and what we're dealing with in Australia. Benison's also the co -author of Beyond the Baby Blues, which is a much needed guide to emotional wellbeing during pregnancy and early parenthood. Man, I could talk about that in itself. That's a whole podcast....

And then personal experiences as a mother to Sam, Benison's son, Sam, who's now a young adult on the autism spectrum. And that deeply impacts your writing, your experience of life and gives you a lens, I think, to autism and writing and health that other people may not have. What we're going to do today is focus on teens. And I think earlier we were just saying it's a really big part of life for development for a human being, that teen period. And I don't know about you, but I would say it's probably one of the most challenging periods of life.

What were the teen years like with Sam? Yes, well, going back to what you pointed out, I think the teen years are hard regardless of whether you've got labelled with extra disabilities or differences as Sam has. He has a ASD level two and also ADHD. So he's got those on top of just navigating the teen years. So it does add to a double whammy. One of the interesting things, you know, high school, just the whole thing of navigating to a new high school. Like Sam went to a very like nurturing, small, controlled, special ed primary school, but He's reasonably intelligent and so when we went to the special ed to high schools they said, oh no, he's too bright to come here. He won't be challenged at all. So then we had to go through the whole process of trying to find a suitable sort of mainstream school for him. He ended up actually at a Catholic boys school in the inner west of Sydney who just had the right attitude I suppose and a really nice learning support teacher and things like that. So it wasn't where I thought he'd end up but…

So they were there for the first four years and then we moved down the South Coast and he went to a Catholic high school in the South Coast as well after that, so mainstream as well. That was perhaps less successful just because of the school attitude. We had a few issues later on where they, you know, he was keen on a girl and it didn't work out and he got upset and I felt the school took much more of the girls point of view.

So that was difficult, yeah, it was a mixed bed. I used to say, you know, you just can't predict with high schools what they're gonna be like. So the school he went to for the first four years, It's not a school. Why was that good? Why was it good though? You said it sort of had the right attitude, but what was that attitude? They weren't, you know, widely knowledgeable about autism, but they were just prepared to be open minded. And then in the end, we got support. We had to come in to the school with him for some hours a week and they were receptive to that. But just to say the learning support teacher was just a kind man, I suppose, if you know what I mean. Perhaps I should say the other thing that may have been helpful was the boys only school. And that was part of the problem we went to in high school. Cause it was when there were girls there and he's a teenage boy, which just comes to the other aspect as well. So.

Yeah. Well, let's dive into that. Cause I do think if we're going to talk about teenagers, there's no avoiding talking about puberty.And I, for myself, spend time with autistic teenagers in social hubs and environments and doing work with them. And it is fundamental to any teenager going through that. And when you add being autistic or other things to that, definitely challenging. And I think that it's very challenging for the teens and it's very challenging for the parents.

I don't even know parents that want to talk about it with any child, let alone when there's other things that are challenging. So I don't know. Here's my flat out question. How was puberty then with Sam? One thing I would advise parents is don't assume that your child is not interested in sex when they're in the early teens because you may find out that they've had much more interest in it than you thought. And if they're boys, they might be looking at pornography, I'm gonna say it, on the internet. Girls... And who knows where else they're trying to source material or find out information. Yes. So I think that was what I learned the hard way. The good thing, I guess, with Sam's a no filter boy on the spectrum. And I guess I come from a health background, so that helped as well.

So I just have very... You mean to be sort of medical about it, like less emotional? Yes, yeah. So we have a lot of candid conversations and I've found it really helpful because I could actually talk to him and say things like, well, just because the girls you've seen in pornography do that and this and that doesn't mean that a girl that you might take out for a date is going to want to do that. That's a different sort of thing. And so perhaps other parents would be horrified by having those conversations, but I've been capable of having them. And I think that's sort of diffusing the situations. Well, I think the parents make a mistake of pretending it's not happening. They're more likely going to come into hot water because, and I think there's two ways of hot water. If you're talking about a girl, girls are very vulnerable to being abused and exploited by people with more savvy social skills. And I've heard that this social isolation that may come from being a teenage girl on the spectrum can lead her to take, if someone shows some kindness and interest, they may latch onto that person and that person may not have good intent. So there's that area of, that they're very vulnerable there. With the boys, there's vulnerability that they will get into trouble for stalking, even on social media, that sort of thing as well, or sextortion, which is becoming a big thing. Just, I don't know if you read the dreadful story the other day, there wasn't a young man on the spectrum, but a teenage boy that's suicided when he was a victim of a sextortion scam. And so, you know, there's all these things out there, especially if they're on social media, especially on the computers, you don't know what they're doing a lot of the time. And if they haven't got that social ability to see through and understand people on the internet aren't necessarily who they are. There's that area as well. But yes, but even as I say in the in the real world, if they like a girl or something like that, they you know, they might be being over enthusiastic about it or something like that or, you know, an intrusive. And I said in my introduction here how, you know, unfortunately schools may not necessarily see it from your young man's point of view as well. So this. Yeah. So, yeah. Look, I think it's a hot pot. It really is. And I think consent full stop is challenging no matter what. And I think there's so many things that parents are probably terrified about that are even listening to this and don't know what to do and don't know where to go and may be not capable of having that kind of candid conversation. Maybe I am unusual in that regard. Yeah, I don't know. I don't know. What would you advise? Well, there are some good resources.

out there online. I noticed, and also I don't know if you noticed, I saw you at the disability expo recently. The family planning. That is my favourite. The planet puberty. Planet puberty is phenomenal. So a lot of those resources there, they are there. Being a mother to only boys, I've never had to deal with the issues around

menstruation and the maturity with girls as well. So I'm not an expert on that. And look, I know something about that. And there is that is obviously very different for everybody. We're all different, but that it can also encompass sensory things of not liking, not wanting anything on their body, not liking the feeling of it. You know, there's all there's lots of stuff with that, too. But places like Planet Puberty do actually have really good resources for how to handle that.

But as far as online, which is something I would warn parents about because they will, a lot of teenagers on the autism spectrum will see that as part of their, well sometimes it's one of their main social avenues as well. So, and they don't necessarily understand that a Facebook friend is not necessarily your friend, which is one of the big areas as well. So the e -safety commissioner has some good resources on there and I think there's some other specific ones on women's for disability online safety as well. So there's some good resources out there for parents to have a look at and explain in simple language about keeping a child safe online, which I think is a big area in the puberty space, which maybe wasn't the case even 10 years ago, I think as well. Yeah.

I think one of the things you said earlier that I like is, you know, there's no avoiding it. You said some version of there's no avoiding it. And I think that's probably the thing as a parent that you've got to lean into, you know? Like there comes a time where you've just got to lean into this is where it's going and predictably much sooner than you think. Much sooner than you think. Also issues around diversity in sexuality as well. So, and I'm sure parents be very aware about the high prevalence of gender diversity in the autism spectrum as well. And when I was doing some research for the book, I found that, you know, they've done research in young people in the spectrum sort of expressing interest at the age of like 10 or 11. So we did include it in the book, even though our book's mainly for parents of newly diagnosed. We thought, well, we don't want to fit up front, you've got a child with autism, oh, but they're also gender diverse. But people have to be aware that this is not something that might happen in some time in the distant future. It might be something they're dealing with in a few years or now, and things like that. So we're talking about early teens. So yeah, that's it there around their sexuality, understanding their sexuality. And that comes in, yeah, to say you really should be thinking about those things.

I think that's why that book's so important, I think, because, you know, I even think you're saying all these things that seem quite sort of normal and natural to you, but for many people, they're not. And even having gender distinct from sexuality is a huge concept for people, that you can have fluidity within your gender or be exploring gender and that have nothing to do with sexuality and sexuality is a separate thing. And then sometimes they intertwine. But you're saying that like, oh yeah, gender. But I think that's not a normal conversation for a lot of people. And that's why the Australian Autism Handbook is good. Because sometimes you just need a big book, water paper to look up in the index and find what you need and get help. Yes, that's right. That's right. I probably just say that, you know, we've got a section in our book about dads, you know, and one of the dads we spoke to, I think, in 2013 when the previous edition came out was Luke Priddis, the Penrith Rugby League player. And at that stage, his child on the spectrum was quite young, but we revisited him in 2023 and he has one child who is now gender diverse. And I thought, well, that's really interesting. I think if the average rugby league footballer can adjust to these. Totally. And Luke handles it amazingly. Luke is an extraordinary father and actually really incredible with all his kids, but has managed to find, like you say, you know, big, buffy rugby player and he's actually incredible about gender fluidity. It's actually really inspiring. So I do think that's a powerful part of your book too. Yes, but sexuality, whether they're gender, but also which way they're going to lean sexually, whether they're going to be pansexual and be interested in sex with anyone or I met a young man, of course, Sam did recently who was avowedly asexual and I have to frankly admit I was a little bit jealous and I wish my son was asexual because I would have made my life a lot easier. I don't know about that medicine but sure I understand the feeling. I guess it's so hard when you've got a child that you love dearly and they like girls and you're like and they have like the social nuances to it.

You know what I mean. I think as a mother that makes me a little bit sad sometimes. But having said that, he did actually go on a little date last weekend and surprised us. So anyway.

He's told his parents, mom, I've got this girl coming over and we're going out for lunch and things like that. So maybe I'm worrying too much about him as well. Look, I think we're always going to worry about our kids a lot. And I think it's a valid thing. And I do think there's that moment where you've got to discover that they actually are way more capable than you think. Yes.

I mean, so we've sort of gone deep already about puberty and sex. I don't know, for me it doesn't feel like a deep conversation and maybe that's part of my autistic nature too is I'm like, let's just get on with it. Let's just say it how it is. Let's just talk about it. But I know that that's not always the case for people. So maybe the other thing to have a look at is the mental health part. Was there a shift for you? Did you notice a shift for you in the mental health of Sam or teenagers that sort of starts to show up more so than when they're little? And then what do we do about that?

I guess I'm fortunate, as I say, maybe I've been talking a little bit too much about him, you mightn't appreciate it, but he doesn't tend to have any depressive tendencies, he's essentially still quite a happy person, but anxiety is an issue, and I think that's universal on the people on the spectrum, they're anxious, and why wouldn't they be, as we say in the book, they're navigating a world where they don't understand the language a lot of the time. I don't usually plug other people's books, but I just recently read Jodie Rogers' book, Unique… Oh, the Psych from Love on the Spectrum. Love on the Spectrum. Yeah. And I was very pleased because she used the same metaphor as I did, but maybe it's not original about the double empathy problem that you... I don't know if you've discussed on the program before, but I think it's a really important thing that communication between a neurotypical person and a neurodiverse person is a neurodivergent person I should say, is not necessarily, shouldn't be all the hard work should not be from the neurodivergent person. You also have a problem understanding them and you should be making an effort. So, and she used the same metaphor that I did in the book, which was going to a foreign land and not being able to speak the language. It's exhausting. And so we've got these young people who are going out, especially in adolescence, going to school with all the rules, all the new, more sophisticated social relationships with the teenagers, and they're not understanding it, they're falling on foul of it, they're being bullied, they're being ostracised. Of course, also not having to know how to communicate with the teacher sometimes, getting hot water there, just because you don't understand the rules around it, so of course they're going to be anxious. They're going to be anxious all the time. And so I think that's when people can get the sort of school refusal as well, because you know, how exhausting to go to school. I don't know if you had that experience. Yeah, I homeschool one of my kids for exactly that sort of stuff. So I think so Sam does have some levels of anxiety, but I think it's almost as a universal on the spectrum. The depression, of course, is where we get the sort of the real worrying thing that you can get. I think one thing that's really important to bring home in these messages is that people think, oh, depression only happens to the, I've read about it, it happens to people with, I can't even use that term now, high functioning autism, but the people who are verbal and can articulate and mainstream, but it's not actually the case. And I think that the experts I spoke to in the book, people with more significant symptoms can also be depressed as well. And that's when you have to look out for things like changes in behaviour or, once again, things like school refusal and things like that. So just don't assume just because they're not speaking that they're not depressed and things like that. So we shouldn't just dismiss that as being an issue. But I guess, yeah, so I think that's an important thing to consider as well. But I think more obviously, obviously you're going to see it in people who are absolutely, who were doing well at school or whatever and then stop wanting to go and retreat into their rooms and all that thing as well. So I mean, obviously we need to get intervene in those situations and seeing professionals. Medications were a harder topic to deal with, but certainly be seeing a psychologist. But it's not something you need to come up with all the time, but sometimes when something raises its head, it's a good idea and they can teach them some coping skills. I mean, it's harder to manage than a typical child just because of the fact that you've got those autistic traits, the rigidity of thinking and lots of stuff. So it's harder to change your mindset when you're on the spectrum where they're not able to articulate their own emotions. That's a common thing for people on the spectrum. So they may not be able to tell you that they're anxious or depressed. So you have to be like a detective as a parent and look out for their behaviours rather than expect them to tell you these things. So. Yeah. Look, you've said it, you've said it over and over again already in this short amount of time, but I think it's probably the most powerful thing that you've said. And that is don't assume.

So I think as a parent, you've got to find that balance of, you know, not being in a constant state of terror and assuming the worst, but also not assuming everything's fine either. And I like the way that you said about being a detective. And I guess I would say, I mean, I'm both a parent of autistic people and I'm autistic. And I would say that what makes a difference,for me is when I feel like someone's side by side looking at the world with me, even if they're being a detective and asking questions, which is really different than if I feel like someone outside of me is trying to find out what the problem is. But when I feel like someone's with me and on my side and really genuinely interested in looking at how is the world for me from my view, that makes all the difference.

Yes, yes, your allies in, I'd like to think that everyone has those allies in their life, but unfortunately some people don't. But I guess anyone listening to this podcast is going to be a very motivated parent to be there on their child. So Sam's 23 now, I just keep thinking, you know, I think, you know, they talk about autism being a marathon on a sprint, you know, I sort of, I think I sort of wrote that when he was like seven and now I sort of realise it now. You're still here. I'm still here. Yeah, so maybe that's another subject. So, you know, teens is a whole thing and there's a whole lot of stuff that you deal with, but at some point, and I feel like while you're in the structure of a school, there's more eyes on someone than when they're out of school.

And then sometimes they manage to be in programs that are sort of that transition from school into employment, but they don't tend to last long either. And then boom, life, welcome to life.

How's that going? I mean, Sam's 23 and here you are, the future's here. Yes. My philosophy with him is to always get him out in the world, as you would know, and so we like him doing a lot of things. Getting out, because as soon as you start closing in and staying inside, I think that's one of the things with anxiety, you can sort of develop a cocoon around you and it becomes a sort of prison in a way if you don't get out. So that wasn't helpful. So I have been doing, he has been doing like a vocational programming but we've been a bit slow on that and one of the problems is because they always say look for your child's passions and special interests to find a job and I'm thinking well. Be good if they've got one. One that's transferable.

Sam's does not necessarily transfer into the workplace, he is also not… it's a bit too intelligent to do something that's very routine and mundane so that makes it difficult and it's also quite assertive so he's not going to sit down and do something he doesn't want to do so it's actually quite challenging but he did actually as I was mentioning to you before, express his interest in doing acting courses. And because of the fact that he's actually interested in something, I thought, well, I've got to go with this. And it's a big hassle because we're having to come up from the South Coast to Sydney once a week for him to do this course. But because I thought, well, I have to walk the walk now, don't I? So this is his special interest. He wants to do this. I've got to facilitate it.

Family connections and human connections are really helpful for parents when they're trying to find jobs for their kids. And I've organised him to do some work experience at a Novotel in Wollongong. Once again, it was through someone I knew through autism circles who knows the manager there and things like that. So it wasn't like, I think if parents once again sit back and expect these things to be handed to them, unfortunately they're not going to be. It shouldn't be relying on the government job providers to find the right job for yourself. If you see an environment where you think your child might fit in, where the people have a nurturing who will make allowances and things like that, I think parents should be approaching those sort of organisations rather than thinking that something's gonna land on their lap through like a government provider ring like that. I don't know what your experience is with that, but that's the way I feel that if you've got any sort of connections, and I don't know if this will work out for Sam or not, but at least it's a foot in the door, and I, you know, so working in hospitality is something that might suit him more than some other roles. Like I couldn't see him working in the kitchen, because he's got a few sensory things about smells and things like that. But you know, working on the front desk or in a concierge and things like that, those sort of roles he might be suited to as well. But some kids might like gardening and so there's quite roles outside or animal husbandry is another one I've heard as well. So I haven't mentioned all those because every time you see something about successful things on the internet of jobs, it's always these IT gurus who end up in these IT jobs. Yeah, it's not always the case. It's not always the case. Not all our kids are going to be like that, are they? So yeah, we need these other stories out there about successful transitions to the workplace. Yeah. You know, I think what's lovely about you, Benison, is, you know, people could think...

Oh, you know Autism Circles because of the book. And for sure, you've had the opportunity to talk to some amazing people and do research and write for medical journals and things yourself. But at the heart of it, what I hear is a mum who's talked to other mums and parents. And any one of us can do that, can just find other adults in our life that we can talk to. And the moment that we have the courage to say, hey, this is what I'm dealing with or here's what I'm trying to accomplish, almost always someone you know, knows something that can help. Yes, that's right. I mean, I, you know, I think about those people I've met through autism circles who are now my best friends and they, you know, and I've got friends who aren't in that space, but there's always this, you know. It's just that shared experience and even though our kids are actually quite different in what they're doing and how their autism presents, we get each other. Yeah. And I think that's what's great for the teens too. So we're really heavily focusing on a parent perspective, because obviously we are. But I think that's also really powerful for teens. And I see that a lot with the social hubs is the difference that makes the moment that they're together, because they are with a group of people who just get it. And, you know, they don't have to alter themselves or change themselves or any of those things. They're just in an environment where people get it. So I guess that would be my major recommendation too for people is to find places where your teens get to be with other teens that get it. And whilst we've talked a lot about the dangers of online, I also think there's something really great about online because for some teens, they don't, the thought of leaving the house is too much, you know, like that's not gonna work for them.

And yes, there's those moments where it's good to push them a little, but a lot of the time when they're actually online and allowed to do that, they do form connections with people that then empower them whenever they're out in the world. Yes, that's true. I shouldn't have been completely negative. As I say, last year Sam went to go, I don't know if the Wiggles reunion concert they had, where they, for the over 18s, where the old original Wiggles got together and they had played at, well, Arena out at the Homebush and Sam insisted on going. And so I ended up, I got the tickets late, we ended up in the mosh pit during COVID. I thought, oh, why wouldn't I do this? This is the most high risk thing I could ever imagine doing. But I was like, I reckon about 30 % of the crowd were people who were were divergent. Yeah. But not all the most of them weren't. They were just young people that were just loved the Wiggles. They just wanted to relive and enjoy themselves. But afterwards, Sam disappeared on me and he suddenly found and I've been really gone. He met up with all these young men on the spectrum who are all Wiggles fans. They'd known each other online for ages and they'd all just got together. And so he just disappeared and met with these people he'd known online for ages because they were all reunited by their sort of love of the big red car. Yeah. I think it's a safe space for them. I think that's the thing we should realise ourselves that some of those autistic behaviours, we call them autistic behaviours, but really they're just human behaviours. We all like the comfort of something that's secure. Whenever I get depressed, I drag out my old BBC Pride and Prejudice and watch it as well. So, the comfort of familiarity and things like that. So for these young men, it was so lovely to see them. Though I didn't have no idea this was going to happen. They were going to disappear and just meet all these young guys who would he'd only ever known online before. But somehow they all connected at this Wiggles concert. So that was lovely. Yeah. If you were going to say, I don't know, I'm going to put you on the spot. What is your expert advice for parents of teenagers that would you say would make the difference?

Be proactive, you know, I think is the main thing. And they're probably thinking, oh, do I have to be? I feel like, you know, yes, but yeah, I think if you can do that, thinking ahead about friendships and schooling and puberty and what's ahead. I know of some brilliant parents who've actually organised their child's jobs when they leave school, when they're mid -teens. I mean, I was never like that. I was never that organised and things like that. But I guess, yeah, be proactive and get in there early and support your child in the best way possible and hopefully, no one's gonna guarantee it, you might have a smoother sailing adolescence than you might have feared. Yeah, well I think that is really great and I guess you have certainly walked the talk and so has your husband. I mean we haven't even mentioned it but he took Sam to Africa to talk about being proactive and getting him out of his comfort zone.

People can find, Google that, just Google it. Go on Google, you know, 'Benison O'Reilly's son Sam Africa', and you will find out what happened. But yeah, I think it's really powerful what you've said. And I do also really recommend to people that they read the Australian Autism Handbook as a place to at least open up various things that they can go and look at themselves and research. Alright, Benison O 'Reilly, I'm going to say your whole name in case anybody wants to find you. Thank you so much for your time and talking to us on the podcast today. Thank you.

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