Neurodiversity in the Sandwich | Nicole Rogerson, CEO of Autism Australia | Club Sandwich

Hello. Well, I was gonna say. Well, I certainly know about the clubbing part of it. Ye. Yeah, right.

I was an amazing. I was one of Sydney's best door bitches.

Well, I've got some stories, but nobody ever wants to talk to me about that. Right. I don't know.

I really did. It's a. It's a. Anyway, I have moved on. My career changed.

Really? Well, why'd you go from door bitch

I think it's like most people, a lot of people that work in the disability sector are there because they have a family member that has a disability. And I have a son called Jack who has autism, so he's the reason I'm in this industry. But ironically enough, he doesn't think it has to do with him. I often hear he say, you know, my mum works at Autism Australia, like I work at Holden. It was a choice I made apparently completely on my own.

We hear stories, we live stories, like. Absolutely. So Many. And I think that it's a combination of, you know, I've always said that parenting a child with autism is a little bit like graduate level parenting, right? You, you can't do the easy way, you've got to do it the hard way. And it's usually always difficult and the juggle is real. So it just adds an element of difficulty. You know, it's doing what everybody else does, but a few added extras thrown in. And the thing that most parents don't have to think about, but parents of autistic children think about from the time they're very, very young is I can't die. I actually wrote a piece, an op ed in a newspaper a few months ago and it was entitled something really classy like, you know, I just can't afford to die. And a couple of people said to me, oh Nick, it's a bit morbid, isn't it? I said, I promise you, every parent of a, you know, quite impacted autistic person is going to feel that way. They're going to spend their whole entire time thinking about their ageing years and then if you overlay that, that they're deeply concerned about the future and deeply concerned about their own children and then they get thrown in the layer of having to be the carer for their parents. Remember, grandparents can be for an autism family can be your best hands, your best friend, your best love, unconditionally help her in the family. And some grandparents are the judgiest non helping, just don't get it and aren't on board. So there's no one experience for families with kids with autism and disability, but it just does add an element of difficulty.

She's been thinking that since her daughter was a young child. Yes, she has. It's just now it's visually really obvious. And that story rings home to me because we were contacted in the office recently where some, I don't know, middle aged women kind of contacted me in a panic. What do we do? Our elderly mother has just died quite unexpectedly and now our autistic sister has been living at home with her and now what do we do? We, she's never lived with anyone else other than Mum and she's not coping and we have families of our own and how do we do this? I felt terribly sorry for Her. There was another part of me that was just thinking, this is really badly planned, because as you age as a parent, there's really no point in thinking the inevitable won't happen.

It literally will happen. You know, you can take a bet on, you know, the actuarial tables. We're all going the same way. So you just have to plan for it. I think you as a parent, have to plan for it so that you think about all of your children, whether or not they have a disability or not. And that can be really difficult when you hear of parents who are really stubborn about particular aspects of how they want to be cared for. I think everybody just planned it too late.

Trust me, it'll be so much worse for everyone if you avoid this. Right. And I think it's particularly another layer to consider here is if you have someone in your family who is autistic who does also have an accompanying intellectual delay or will need a relatively high level of support, you really do need to think of the family planning in an economic sense. You have to be thinking trusts. You have to be thinking, where will the go after. We recently had an event, a profound autism symposium, so people who have very severely autistic children, and we had a lawyer present on what are all the things that can go wrong that we know go wrong between siblings when parents die. And in certain cities around Australia, Mum and dad might have some real estate that's really quite valuable. And is that child with autism or a disability? Are they protected? And it sounds really maudlin. And nobody wants to think of, what if all the wheels fell off. Cause people always think, of course my child would do the right thing. And we had the experience. I made my husband Ian come and do it, and we went and saw the lawyer. It looks hardly like we've got millions, Right? So it's not like this is. You don't have to be super wealthy to do this. This is just average Joe that happens to own a house. Right. And you know, Ian's saying, To me. Oh, God, Nick, this is a bit over the top, you know, Tom's got it. He'll be right. Once we go, Tom's got it. And my response was, tom is one bad marriage away from Jack getting nothing.

did I sound like?

And don't pretend like it won't happen. Oh, my God, I love Tom. Tom Rogerson's the nicest guy on the planet.

But let's just not leave it up to chance of what's going on.

Yeah, you really got a plan to

It can be really hurtful. I think we'd. And I'll throw myself in the mix here. Cause I strangely don't really belong to a generation in that I happen to be in my early 50s, but I had my kids really young, so they're now adults, which is not common for people my age. So you. You were so smart or dumb. Either way, it's out of the way, out of the door, bitch into the babies. Exactly. But all my staff are women roughly my age who I watch, you know, taking care of children who are younger, who are still at school, and dealing with parents who are in aged care or getting elderly. And I can see that they have to tolerate the way they're choosing to parent now. And the way, you know, modern parenting is very different than it was, say, in the 70s and 80s, let alone what it was when I was doing it in the early 2000s. So there's changes in parenting ideals anyway as generations move through. But the idea around autism and neurodiversity, and I do think it depends on how the child presents. I think if a child has a pretty severe disability, family and extended family tend to get it and they kind of leave it to the parents to make those decisions. But for those kids who may not have a formal diagnosis, who might, you know, identify as being neurodivergent or adhd, the kinds of behaviours that they're exhibiting might be things like increasing anxiety, social skills may be a little bit limited, school refusal things, a whole range of things that are really common to that particular profile of neurodiverse students. Grandparents can be very intolerant.

Nothing a good spanking won't deal with. Off you go. Go to school.

I did, you know. And to be honest, I sort of sit between those two things as I do think a lot of parents are a bit too soft. Yeah. I do think we need to get a little bit braver, we, our kids to be as independent as they possibly can be as adults. But I don't think we have to return the years of old of just simply not understanding. I think there's a happy medium in there.

there wasn't autism in my day. I love that one. Yeah, yeah, yeah. And also you've got to remember too, like, sometimes, you know, it isn't somebody who necessarily has an autism diagnosis. I think back to my dad, he used to line up cutlery on the dining table while he was waiting for mum to serve dinner. So it all was just very neat. So sometimes it might not be that somebody has the full diagnosis, but they might be a little quirky. And those particular behaviors and those things that we like, which is sameness and things, routines to be in place, et cetera, they became even more important as people get older and their ability to be able to roll with the punches is dialed down a little bit. So we may find some of those behavior behaviours spike up a little bit and we might see those in our aging parents.

Or for what we refer to it a lot is some people can engage in what we call masking. So they can be highly anxious people with a lot going on, but they leave the house, they put on a mask. If they can. A lot of autistic people can't, but a lot of neurodivergent people can and they'll put their best foot forward for the day. We see this sometimes with kids in school where they'll go to school and they'll function okay and they'll come home at half past three and lose it and the wheels fall off. Yeah, I find it. My son works three days a week and he needs four to get over the three and that works really well. It's fine with him. But as your need to be out in social settings reduces and your ability to cope managing in those social settings might reduce the friction of, say, your work life goes away. We just find that those rigidities might come in a little bit more. And that's something else for the sandwich generation to have to come in.

Yeah, we get a lot of that and help.

You can't.

No.

Well, you can tell them if you want to. I mean, is it useful? You know, there's a wonderful book by Susanna Sullivan called the Age of Diagnosis. I recommend it to anyone who's interested in this. She does this wonderful of describing what's the point of a diagnosis if a diagnosis doesn't lead you to a treatment regime that's going to give you an outcome that improves it. Now, we often find for those people who are diagnosed later in life as being on the autism spectrum or identifying as neurodivergent, those people tend to tell us that they have an enormous sense of relief, which is. Finally, I've got a label that can explain why I always struggled in certain places. But unless that label is going to lead you to an action plan of what you're going to be able to do to better manage, you know, is there any point in the label? It's certainly up for discussion, but it's an excellent book called the Age of Diagnosis.

It absolutely can. If it helps you, fantastic. If you have that relationship with your parent. I mean, we used to call dad autistic all the time. He wasn't constantly say daddy, so. Oh, yeah, whatever. Where did Jack get it from? Well, I can see the line, dad, but look, to be honest, he was quirky, as you can see, where there might be traits.

But he doesn't have the full fledging part that Jack ended up getting. So we often can these traits if it's useful and you have that kind of communication style in your family. We do. We have a very open, overly open communication style.

It's kind of a bit pointless.

Okay.

There certainly are. Yeah, there certainly are with older people.

And, and, but less so. Less so. In actual fact, we just launched something on our main website last year which was Autism in the adult years. And we'd been commissioned to do this extra work and the team, when they went down the rabbit hole, we started doing resources for autism and aging and they literally just don't exist. Because autism was always seen as a condition of four and five year old boys. Yeah. In the 1990s and it didn't exist. Well, guess what, they're all getting older. And then the problem you'll have is some people who may be autistic but who just don't identify as being. So for many years I ran an early intervention clinic for young children and it was my job to meet the parents when they were new and they were enrolling the child, which was just like the best job in the world. And I would sit there and you'd observe the child and you'd be talking to mum and or dad, but invariably one of the parents, often not always the dad, but oftentimes I'd say to the parents, just in conversation, what do you do for a living? And dad would be like, I'm an engineer. I'd be like, oh, oh, wow, what a shock. But they may not see it in themselves and they might not be happy to be to identify that way. So if it makes you feel comfortable to identify that way, it gives you a label, it makes you feel good, go with God. But if it really doesn't, I just see the no point here in sort

Yes.

Yep.

Yep.

I think it's really dependent on the person and what they do with that knowledge. In some case, giving it a label doesn't result in anything, you know, and it's really difficult because this is a very different presentation to other types of autism. It was a really good but very controversial interview recently with an 80 year old researcher in the autism world, Utter Firth, who's very famous, who went on to talk about the fact that the presentation of autism in young children and children who are diagnosed in the younger years and how it presents in middle aged women, for instance, we're almost not talking about the same condition and we're not. And that was seen as terrible of controversial. But I think what she was describing may not describing it well, but what she was describing was that these two things are different. So if you are a middle aged person, you've been in and out of relationships, you have children, you've had a career and all of a sudden you get a diagnosis, the framing of how that affects your life is completely different to a family who may just be finding out that junior at 3 or 4 years of age who's not speaking. So it's a really different experience. But nevertheless, look, some of it is. There's some recent research out of Flinders University that talked about the idea that we talk about it more. So are more people identifying as neurodivergent because they saw it on TikTok? Is there a little bit of that? Maybe a little bit. I call it TikTok autism. But it doesn't matter what type of autism you've got. Right. It's how you identify, it's how you use the label. It's you do you people.

But isn't that great?

But isn't that great that it just doesn't matter? Like, this would have maybe once upon a time been like, oh, you have a label of X.

It's funny you say that, because I was only in a conversation with a federal ministry about this recently and I said, is there a correlation between people's attention spans, technology, how children are presenting in the early years? I'm not a researcher. My answer is. I don't know the answer to it, but, gee, I hope some really smart people are trying to figure that out. And I, you know, I follow the work of Jonathan Haidt with great interest, but I think, yeah, look, the answer to that is probably yes, all of the above. I don't think technology is helping us. We also have to think about it. I think about this in terms of Jack's mental health. In our family, we just happen to be really interested in politics, right? Some people like sports, some people like whatever, our family, we like politics. And I guess I think that would exclude Jack. I just thought Jack wouldn't be interested in politics because he has autism and he has bigger fish to fry. But turns out actually he is really interested in politics. But the problem is, if you're interested in politics, you can get that dripped into your bloodstream. 24 hours a day on Twitter or threads or whatever. You don't have to turn it off if you're interested in that. Right. The game's not on Sunday, it's every day. So we found that we had to change the way we talk about it, the way we listen to it, just even little things. Like, I might like listening to a podcast topic might be Trump. I don't put it on the kitchen radio anymore. I put my headphones in so that if Jackie's reading a book, he doesn't have to listen to his mother getting angry about Donald Trump. You know, there's just certain ways that technology helps us, harms us. It's just worth thinking about and talking about as a family. I'm a big believer in the talking about it. Yeah, absolutely. Because if in a family, one person's carrying the load, they are doing a majority of the caring, they're doing a majority of the juggling. I call it, you know, grudging level parenting, whatever it is. We can't have that person fall down. No, no, the boat doesn't row.

And sometimes we as women just do such a bad job of saying, I got this, I got this, I got this. Particularly when we do a good job

So in my family, because it's full of men who are always a bit, you know, special, I'll just go, you know what? I'll do it.

Cause I'm better than all of you.

And I am better.

I am better.

And it can go with disabled kids as well. This is a really important point. You are doing your disabled child no favour to do literally everything for them. So there are some children with very severe profound autism who will need 247 care. I'm obviously not talking about that particular. But other groups and I can say having two sons, one that has autism and the other one doesn't. The child with autism is the least of my problems. I wake up every single morning and he's downstairs with a coffee and he's emptied the dishwasher and he's brought all the dirty clothes down in the laundry. So they're ready to go. He is not my problem. The other one is a slime ball of messiness. And you know why that is? It's because we spent so much time teaching Jack the skills we knew he'd have to have when Ian and I eventually died. Cause you're gonna die. But we forgot to do it with the non autistic ones. That totally makes sense to his future partner. Not my problem. But you know what I mean, we've gotta remember that even if our kids are neurodivergent or they're autistic, don't lay off them. Come on. You want them to be their best self, to lead their most independent lives.

And that's. To me, that's the dopamine. To me, that's the power juice I get, which is, what can we do here?

How many people who listen to this podcast, children are still. They're still paying for their mobile phones.

Yeah, there's some. There's some pretty good work being done by a couple of journalists in this area at the moment. There's some stories of. Some really sad stories where kids with autism have been involved in some online radicalisation and it's been managed quite poorly by, you know, police forces around the country. So I think there's some stories still to drop there. Yes, absolutely. And people with autism can be a lot more vulnerable online. And that's where this really hard juggle comes. As your children get older and they're no longer kids, you can't have parent controls or you shouldn't have parent controls on what they can and can't see. But likewise, you've got to be really careful. I know a young woman at the moment who is wrecked with anxiety about climate change. So there's no point in telling her it's okay, climate change is going to get fixed because it's not. It might, but. But. So there's no point in lying. But I think again, this is where I think just leaving the lines of communication are open, where possible, having that chat. And it might not always be you and your partner. There might be things that, you know, I even find that Jack will talk to me about some things he doesn't want to talk to Ian about. He will allow certain requests from his brother that he wouldn't, you know, he'd roll his eyes out if it was Ian and I. So sometimes you've gotta divide and conquer. But I think having that open conversation between the whole family that says, how are we gonna, how are we gonna skin this cat? Is really what has to happen because we can't stop that online juggernaut. So we have to work out how to manage it. Interestingly enough, I know a couple of tweeny autistic kids at the moment who are doing a really good job of putting themselves on technological diets. You know how to turn it off? I know. And Jack, his psychologist got him into a habit about six or eight years ago of waking up in the morning really early and get up and go for a good hour to two hour walk and don't take technology. And I'm sure he's walking around Callan park having a chat to himself, but he does it religiously seven days a week. And it's his way of just getting his head right, working out what he's got to think about, what he wants to set the day up and then he comes and starts the day.

Well, you know what? Give a really good strategy to an autistic person who likes a routine because then he'll do it every day. It's without failure. But I think we could all learn from that.

Just turn it off for a while, walk away from it on a Sunday, leave it upstairs, leave it in a different part of the house. Just all of these things that can reduce anxiety in people with autism and who are neurodiverse. Well, guess what, they kind of work for us as well.

Oh, this is such a good question, because this has just happened in our group.

Anyway, the young boy that went to school with my boy and Ben, he's a gorgeous young man. And he was raised by his grandparents, so neither of his parents were involved, although they're still alive, but he was very much raised by his grandparents. And they're both in the early 80s now. And he's. Nanap passed away about a year ago, so he's still with his granddad and he's okay, but Ben is just devastated and he's. He's very sad. So Jack and his friends would occasionally, they go and have a beer together at the pub and Jack would come home and say, she Mum. Ben still talking about his dead grandmother. To which I said, oh, well, Jack, you know, it's gonna take a little while. You know, it's gonna. And sure enough, when I saw Ben many months later, he said, well, you know, Nicole, my grandmother died. And I said, I'm so sorry, Ben. And he certainly did want to talk about it. It is really sad. And anyway, Jack came home and he was a little intolerant of it. And I said, oh, Jack, you know, I think it's gonna go on for a bit longer, him talking about it. I said, jack, what would happen if. If I die? When I die, what do you think? Don't you think you'll be sad for a while? He said, oh, I'd give it a week or two, but you'll be dead. Nothing I can do. It's all a bit over. Can't help you. Yeah. So I don't know. Okay. I laugh my ass off. And I don't know whether I'm really pleased about that. I hope somewhere he does have three weeks of sadness and then he remembers me as being great. I hope that's easy for him. I think again, it's like autistic people are like anybody else. They have strengths and challenges in all sorts of areas, and some will cope with this well and others will be lost. But if there's anything else I could take away from today, it has to be that the more families talk about it and plan for all the inevitabilities of who goes in what order, and you can Never assume because you're the youngest. Even though I'm drastically, obviously younger than my husband, we really need to plan for me dying because honestly, if he dies, it's just whatever. But the man does an Internet bank. So if I die, like, I need help, really, my children need help.

Big time.

of life and don't make it dire and terrible. Like, it doesn't it need to be done. It needs to be.

I don't know. We were both, Sarah and I were at the same funeral a few weeks ago of our very dear friend. And if there's anything from that funeral that you came away from, which is keep those, your loved one close and have a happy and honest and an open life and chat about these things, because it happens to all of us.

and a laugh at the same time

Absolutely.

Yeah, look, definitely come to our website, which is autismaustralia.org Our website is broken up into age groups, so come in and click into our adult years. And we have a whole section in there on aging and things that you have to think about as you're aging with autism.

Thanks for having me.