Episode 3: Unveiling the Future: Challenges and Hopes for Adult Autistic Individuals - with mum Tess

Welcome to our new podcast series! This episode I chat with Tess; mum of an adult Autistic child who also faced major health challenges while growing up. 

Tess shares her experience and insights including what she would say to herself if she could go back 5 years, and what it's like bringing up an adult neurodivergent son as she ages and needs to think about her future and how it effects his future.

What families go through with school-aged ASD children compared to adults is very different, and it's nice to hear Tess talk about that.

Helpful for parents with ASD kids edging closer to end of their schooling years, to start thinking about the future; the workforce, living arrangements etc

Advice Tess shares for other parents is to look at the neurodevelopmental milestones not the neurotypical ones in life that most other families use. She realised this was something she needed to do with her kids.

Being a parent of a neurodiverse child is “a window into a completely different world”

We hope you get a lot out of listening and we would appreciate your feedback, so please reach out via comments, emailing us etc. We'd love to hear from you.

Clint

Autism & Beyond Australia

If you enjoyed listening and found this content valuable we'd appreciate it if you could provide a positive review and to share this with your network to potentially reach and help more parents and families 🙏

Transcript

Autism & Beyond (00:07.768)
G'day guys, welcome to Beyond the Spectrum podcast yet again, conversations with parents about autism and beyond. I am your host Clint from Autism and Beyond where we do support and one-on-one coaching for children with autism. So today's guest, I haven't actually worked with.

Her child is the first time where I haven't actually worked with a child. So funny enough that we met tests through the agency We're getting to do our SEO for autism and beyond And we connected over the fact that her child older child has autism We have a good chat for a different perspective from I guess more of an older child and her journey that she faced going through and the challenges and successes she had with him, so

Hopefully you enjoy the podcast. always, if you would like to be a guest on our show, please email me at info at autism and beyond.com.au. Welcome Tess, tell us a little about yourself and yeah, tell us about you. Thank you very much, Clint. I am very proud mother of two children. One is 23 now and my boy on the spectrum is 21 and very happily married, which is yeah.

no small effort on our part throughout the years. I actually work at Excite Media, which is how I met you. That's right, helping us get popular. Yes, which is going to be very easy, I think. I guess the first question is, are they diagnosed? And did you get them diagnosed at a young age or older age? Yeah, so he most certainly is diagnosed. So he's one of these children who also had a heart condition.

So he was sort of under the radar from a very, very early age and there was a lot of intervention around his heart. He's got a few other soft indicators, know, bony issues and skeletal issues. Yeah, he came under the radar very early. So from, I think, you know, when the speech delay was happening and Sam, bless him, I called him the 11th hour kid.

Autism & Beyond (02:22.86)
So he would just, you know, he would push out that, you know, that milestone to very, very end and then start talking. Just when we'd sort of organized speech and the Makaton sign, but he was diagnosed at four. And I actually looked over his notes the other day and it was, know, Sam became quite obsessed with the shark.

and stopped answering questions. it was very obvious. All of the spectrum things occurring at that age and was very speech delayed, very obsessive about his interests, really, really focusing in on his sister, on me. Although he is quite good with looking people in the eye. So there are a few things that aren't so obvious with Sam and I was like,

As I've come to know more people on the spectrum, yeah, a person on the spectrum is just a person on the spectrum. You've met one and, and yeah, there are typical signs, but yeah, there are also people who diverge from that. So Sam is quite social as well. And when I say that, enjoys people much more than a lot of his friends. And he's sort of the organizer of his group, but.

Yeah, so he was diagnosed very early. had a lot of, and we had a lot of intervention and a lot of support, which was great. Was that with the heart stuff you mentioned, was that like related to, was it the earl's denos with the stretch marks on the back and that can have heart? Or was that a completely different? It was completely different. Yeah, he actually didn't have an aortic arch, which is a really necessary piece of the whole heart thing.

He was born without an aortic arch, so we had full heart surgery for him. Wow, okay. Yeah, so it was very challenging and he does need to go in for more surgery at one point. Thankfully, because of that, there was a lot of early intervention and he was on the radar early on.

Autism & Beyond (04:42.958)
So he did manage to, we did manage to get a lot of support for him at that really critical time from sort of year five and then all the way through his primary school years. He had a great unit at Kemmer State School. They were so helpful and yeah, in giving me strategies as well. think 21 years ago, know, or 15 years ago when he was diagnosed, there was still a lot of

And I've noticed this has really changed and I'm so grateful for it. There was still a lot of, well, we can sort of apply behavioral techniques to sort of teach them how not to do this. I've always approached Sam as this is who he is. He has autism. He is neurodivergent. He definitely has strengths like so many of them. I don't want to...

set him up thinking I need to behave my way out of you know any of those autistic traits. I was very fortunate in that I had a group of girlfriends in the all of our kids went to the unit and that was our approach as well just accept and help and appreciate. Yeah well said it's a diagnosis it's not you know it's not it's not anything bad you know.

It's about working with the differences and understanding the differences. I think that's the big thing is that as time goes, there's more understanding and just from the community at large and creates a better world. A lot of the kids I work with that I've mentioned it before, I tell kids, because they're all pretty quick to tell me, I've got autism and this and it's like.

And my response is always the same, like, yeah, cool, great. Yeah. Like, awesome. Yeah. It's like, and, you know, and I do, I, yeah, some of them, you know, if they are down, I sort of say it's, it's your superpower. And they look at me like, how so? I'm like, well, you see the world through a different lens. You see things completely different. then it's like, the way the world's going, we need different thinkers. So you'll be the, the leaders of, of the future, you know, like taking us in that.

Autism & Beyond (07:03.194)
different direction now and sort of always gives them that moment. Yeah, so that's interesting and obviously you've had maybe not fair to say but a lot more challenges than other families growing up. So with the heart stuff and did you find it hard to manage both or was it sort of like, you know, the heart stuff is obviously priority versus the other side or?

yes. It's always been, there've always been several different things going on with Sam, which require management. I also unfortunate to have a great GP. So I think the key is support, support, support. I live three blocks away from my parents when Sam was little, they were so supportive.

My girlfriends, most of them, when we were in primary school and high school, they also had children on the spectrum. I think that has been my greatest blessing in this is that I've had a lot of support. it's, although there has been a lot going on with Sam, it's just made easier. It is never a truer word was said. It takes a village to raise a child. And it does, it really takes a village to raise a kid with.

on the spectrum and with other health issues. And luckily I've had that village. That's great. I think for my side of things is I want to be part of that village and trying to make life easier or give the parents the time out or be that mentor that quite often how many times I've heard stories like parents will say, can you just tell them to do...

such and such because they won't listen to me. I'll be like, all right, you got to do this. And it's like, okay. Yeah. So that's probably the same as husbands and yeah, as well. don't listen to. Yeah. The parent factor is very real with kids on the spectrum. And the thing is once they get that idea in their head, like it's like, right, this is my idea. I don't listen to them. I find also that's been very important for Sam as well. Having that, particularly the older male uncle.

Autism & Beyond (09:26.036)
style mentor. He has two uncles and one cousin who's quite older than him, yeah a bit older. Yeah the cousin actually is neurodiverse as well so that has been brilliant. They function as Sam's mentors so we haven't really had to go outside and find like an organization like yours but wow you're providing such an important

scaffold for young boys. need to see, you they need to have an older male that isn't their dad in their life. think, it just guarantees, not guarantees, but it gives them so much more emotional, that sense of belonging is what I want. Just seeing one of the boys I've seen, I've seen for three, four years now and watching our relationship evolve, you know, it started off.

When he first started me, he wouldn't take his shoes off, he wouldn't do anything outdoors, and we'd end up just walking around chatting about mythical creatures. Fast forward, I think he's in grade 11 now, and now we're talking about girls and relationships, I'm out of my depth sometimes. I'm just like, yeah. And he calls me his shaman, like I'm his shaman, because he's talking about mythical stuff. And we have, I guess, quite meaningful conversations, and it's good to be able to.

see that evolve, know, like just that nurturing and growing and seeing that, you know, we're about moving to Melbourne for uni and all this sort of stuff. having that place that, you know, that support, I think, in their lives is what we're always trying to strive for. know, that mentor, big brother, big uncle, big auntie. Did you find that

You did you look after your health and your well-being through all of these challenges or did you sort of find you put that on the back burner and I did put it the back burner and that that was disastrous I You have to put it Yeah, you have to put yourself first. It is just that you have to put your well-being first when you do

Autism & Beyond (11:41.006)
lot of things and I think it's great like Sam now comes to check on with me so you know now we can do these things together I'm teaching him about how to take care of his emotional and mental well-being as well but I'm also neurodiverse so I have ADHD which is you know pretty common having a lot of neurodiversity within the family so yeah I actually did have a

quite a bad depressive episode came through that and yeah, I try and put priority, try, 80 % there. I do get a little bit affectionist about it, but I try and put that on the front foot, yeah, make sure I'm, and it's really simple, it's the simple things that we forget to do. It's like a walk every day, yeah, eating greens, yeah, make sure you're taking fish oil, like just to get your exercise in, do qigong, yeah.

And yeah, therapy as well. I see them to sort of who's got a great deal of understanding around neurodiversity on both people in the spectrum and ADHD who I can talk through things with and Yeah, that's been critical as well. I think I think that's a great point because you know, yes, we work with the children

specifically, primarily, but I'm always like, right, how do we support the parents? How do we support the parents? And it's interesting, there's always quite a bit of resistance there. And it's good because I'm not a parent. It's good for another parent to say, yes, you must look after your health. And as the old adage, if the plane's going down, you've to put your oxygen mask on first. You can't help anyone. You passed out on the floor.

And the thing is, do think, having observed from my circle of friends, it does take a bit of a crisis to get to that point. You are just putting everything into this child. Because when they're younger, I remember saying to Sam so many times, darling, I can't talk about Ben 10 anymore. I can't listen to Spiderman anymore.

Autism & Beyond (14:00.534)
They are really repetitive. They do take a lot of your attention and you want to give it, but yeah, you have to be in really well place to be able to give them the attention and the love and the support that they need. Yeah, 100%. I think that's true. And again, I can do that because I only see them for half an hour or an hour ago and it is...

you know, Minecraft and Roblox these days. hit me with it all and I've played Roblox a couple of times, you know, just to see what it's about. Minecraft I haven't touched, but you know, just having that conversation with kids about it, again, it builds that rapport and trust. To me, it's that little sneaky little back door into helping them achieve more because they're like, wow, genuine interest. And then it's like, right, so let's tell me about what's happening here or here. If you had to give

Well, you've already given some good tips for parents. Any other advice from your journey that you've been through? Is there anything in particular that you think would be valuable for listeners to hear? I think the big thing for me was, and now I'm at a different stage. the school age stage, it is very demanding, but also they're at school.

So I did think about what's going to happen after school. It's a whole different challenge. You're looking at the next 40 years rather than the next year or getting them through the next school year. So my advice to myself five years ago would be start looking at the disability support payments. Start looking at different...

organizations that can help Sam get into those job placements. Except, yeah, sort of, I had hoped that Sam would go through TAFE, but I'd also tell that to myself five years ago as well. The TAFE system I have found is, they say that they're very supportive. I think it probably depends on where your kid, where their strengths are. Sam has no executive functions, so he like,

Autism & Beyond (16:24.814)
Planning an organization is very difficult for him and that didn't fit into this I wish I had have just given a little more thought to this time of his life because although he's having a whale of a time and he does go out with his mates occasionally and he's doing a lot of NDIS activity Now I feel like I need to start setting him up for life so part-time job or in whatever capacity he can do

disability support payments, start looking at financial advice for him and start getting him to put away $100 a week so that he can have that. Just those sorts of... And I know every parent with a child who is special, all the special parents out there, because we're the ones who get the special kids, it is always a fear that sits in the back of your mind, what happens when I go? And I just...

Instead of it being a fear, I'm looking that fear straight in the face right now. I'm trying to just make plans. That's good and I think something I bring into my sessions randomly is conversations about future, whether it's work, jobs. I've got quite a few kids who are young.

want to start a business and yeah again most of them want to be youtubers and and I take the approach of is like okay cool you want to be a youtube star cool what are you going to do like instead of saying you can't do that dance it's like okay what what do we need to do now to help you take those steps and and that that future planning as well yeah again from my perspective it's only a little blip in that you know their whole life but it's just that question like yeah they probably get told a thousand times you can't do youtube you can't do youtube i'm sort of okay

What do we need to do? And I do say, just so you know, like 0.1 % of YouTubers will become Mr. Beast, but I really like that sort of future proofing or future planning with them and it doesn't have to be setting concrete, it's just planting those little seeds and building that confidence. We do have conversations about...

Autism & Beyond (18:44.301)
pocket money and say, right, you'll pay yourself first, 10 % away for yourself and 10 % to charity and do do do do. So yeah, no, think that's, I think that's really good. Yeah. And I think the thing is that they need that support ongoing. So it's

Yeah, once they've got that I and I know once they've that idea in their head That's it like it's a Sam Sam is going to sell mead at some point of his life You know, he's made me that is like trying to out and sell it Yeah, there's no limit to the to what they can do yes supporting them through and the other thing I found is like the daughter who's yeah

She found a girlfriend, she's at university, she's now moved out, she's got her license. I didn't realize how much we put on milestones. yeah, she's at this stage, she's at this stage, she's at this stage. And I've noticed with Sam, those milestones aren't, I'm sure he'll get there, but they're just not, they're not as present. And lately we've been talking about, let's find different milestones.

Yeah, let's sort of ignore the neuro-typical world and let's look at our neuro-diverse world. What milestones do you want? And so those sorts of conversations are the ones we're having at the moment about, so where does he want to go now? He doesn't want to I don't think he'll ever drive. So I said, well, that's fine if you don't want to drive because the seats are uncomfortable and like,

Yeah, it uses too much petrol, mum, and petrol is destroying the environment. yeah, so we're looking at those sorts of goals at the moment. Yeah, that's great. think that's important. It's probably true for everybody, isn't it? know, milestones, I guess they're not real in a...

Autism & Beyond (20:57.92)
in essence are they just self, you know, self measuring type of thing like, I should be, I should be doing this and I should be doing this. I think when you can, you know, release, break the shackles of milestones and sort of go, Hey, this is the journey I'm on. And that's okay. And I find myself actually doing my, I've just started my Brazilian Jiu Jitsu classes and I'm

I think a lot, I'm like, right, I should be able to do this, this, this, and this. And everyone keeps saying, how long you been doing it for three months? Like, what are you expecting? And it's always a good reminder to go, I need to step it back. And it is that long term journey. It's not just, I'm gonna do it for three months and be the greatest ever,

At the moment, it's just survival for me. like, I didn't get tapped out five times. It's like, yeah, you're really happy. Yes. That's a win. get up and say, I'm done. But yeah, so I think, yeah, I think milestones are, it's almost that, that ego driven thing. And if you can reset your milestones as more of a personal milestones, not

comparing yourself against everyone else, I Yeah, I think you'd be a lot better off, you know, and in our business course, we talk about is like, don't judge up and don't judge down. So don't look at the people above you and be like, man, they're so, so good. They're doing this and this, also not the other way. Go, you know, looking at other people that, they haven't even done this. Yeah. So I think it's, I think that's a very good thing is you just don't judge up, don't judge down, just sort of.

focus on your June. I'm not sure if you know, but there are a couple meteries up on the sunny coast, maybe Yandina, I think there is one. yeah, so there's some, some market research to be done. There is, and he's going, well, so where are we going to get the bottles for the mead? And so we're going to have to go and buy some mead to get the bottles to fill it with our mead. I said, okay.

Autism & Beyond (23:14.478)
No, we don't have to do that. We can actually just get... But yeah, he's got me there. Yeah, we actually went down for his 21st because at the moment the obsession is anything history. So Vikings and he's a great Greek myth professor. So that's sort 600 years of history he knows everything about. So we went down to Molnia, which is a Viking restaurant in Sydney for his 21st.

and took the mental cousin and it was fantastic and he actually had mead in a cocktail and he was just chuffed. Very good. So you'll have to go to the Medieval Festival at Caboolture because there's Vikings and there's mead and they drink it out of the old cow horns and all that. So he's got all of that. It's so funny. And when we went like...

We went to Italy and he was walking around Rome and he was going look Romulus and Remus he was 11. I'm professor It was great It's amazing. It is just such a gift. It is just such a gift. know, is so different and so fabulous in Yeah, he's a very unique way. I feel

Yeah, I feel very privileged to be on his journey with him. And that's, I think that's how I feel, you know, with all the kids I work with, know, it's always, I'm so grateful that parents have let me spend the spend time. It can sound, I don't know, it comes across as cross-court. cheeky, it? it's 100 % how I feel. Like all my emails, like if it's time to renew, it's like, you know,

Thanks for giving me the opportunity to spend time with your family, it is a genuine thing for me. So if anyone's listening to this, it's not just a throwaway line. I'm so grateful that I get to do that sort of stuff. it's a window into a completely different world, isn't it? It is so unique in the way they think it is so unique. It's really lovely to touch base with that. Awesome.

Autism & Beyond (25:39.168)
Anything else you want to add before we wrap her up? I think you're doing great work. Thank you. Yeah, I really do. think they're definitely a need for the sort of work you're doing in the community. Particularly in today's world where our nuclear families are sort of fractured from that wider web of relations that I'm really, really fortunate to have.

see the need for your sort of organisation where that doesn't exist within a family. It's critical. And lots of fishing. That's critical too, of course. 100 %! You have the most best job. Someone's got to do it. I'm glad it's you. Thanks for your time today Tess. Thanks so for having me.

wants to reach out to you or are you open to people contacting you? Absolutely, yeah, yeah. I'm trying to do a lot of advocacy work, yeah, so that's something that I'm really interested in for both ASD and ADHD. You can reach out to me at Tess at excitemedia.com.au and I'll respond immediately. Alright, thanks. Thank you very much. Thank you!