What happens when the demands of everyday life become too much for a young person with autism? For George Chamberlain, Team Leader at RiskSTOP, watching her daughter Zoe face the challenges of autistic burnout led to some life-changing decisions.
In the latest episode of the People at the Heart podcast, George opens up about her experience as a mother to Zoe, a 14-year-old diagnosed with autism. She shares how Zoe’s struggles with school life, social anxiety, and burnout ultimately led them to embrace home education—a decision that has transformed Zoe’s well-being and learning experience.
Throughout the conversation, George highlights the reality of autistic burnout, its impact on mental and physical health, and how understanding and support can make all the difference. She also reflects on the importance of listening to your child, trusting your instincts, and finding alternative paths when the conventional ones fall short.
“By sharing our story, I hope to raise awareness of autistic burnout and let others know they’re not alone,” George says. “There’s help and hope out there.”
Tune in now to listen to George’s inspiring journey. If you’d prefer to read the transcript, this is also available below.
Transcript
Natalie Joyce 00:00
This episode comes with a content warning. This is simply to empower you with the knowledge you need to make healthy decisions about how and if you should consume this episode. Please note that we'll be discussing autism and burnout in young people. Hi everyone. I'm Natalie Joyce, and I'm responsible for people and social responsibility at RiskSTOP Group. Welcome to another episode of our People at the Heart podcast, where we like to chat about all kinds of things, both serious and light-hearted, connected with our team and our work here at RiskSTOP Group. Now, it is estimated that 1 in 100 children have a diagnosis of autism spectrum disorder in the UK. As I'm sure we've all seen in the media, the wait for diagnosis via the NHS is protracted. So what does this mean for a parent of a child who's suspected of being autistic? My guest today, George Chamberlain, who is a team leader for RiskSTOP, has joined me to share her story as mum to Zoe. Hi George. Thank you very much for joining me.
George Chamberlain 01:09
Hi Nat. Thanks very much for having me.
Natalie Joyce 01:11
Now before we get going, George, would you explain why you suggested that we record this episode?
George Chamberlain 01:16
Yeah, of course. I just really wanted to talk about our experiences with autistic burnout and also home education, just to both raise awareness and let anybody else know if they're going through something similar, that they're not alone.
Natalie Joyce 01:30
That's amazing. That's really kind of you. Thanks, George. Tell us a little bit about Zoe.
George Chamberlain 01:34
Yeah, of course. Zoe's 14. She's a lovely, caring girl. She has lots of interests. Music is a huge love of hers. She loves to spend lots of time on her own, doing her own thing, listening to her music. Since receiving her diagnosis of autism, she's really now able to understand herself and feels like she knows who she is now, and it's been really lovely for us to see her go on this journey.
Natalie Joyce 02:00
So is Zoe comfortable with you sharing your journey?
George Chamberlain 02:03
Yes, she's absolutely fine with it. She also wants to help raise awareness, and she really hopes that if anyone else listening to this is going through the same that they can take a little bit of hope away from her story.
Natalie Joyce 02:17
Thank you. So let's start at the beginning. Tell us what Zoe was like as a child and how she found school.
George Chamberlain 02:23
Yeah, so Zoe was literally joined to my hip right from when she was born, and we've always been really, really close. She started to attend preschool when she was three, and from her very first day, she struggled with what we felt was the usual separation anxiety that a lot of children experience. She would scream, she'd grip my legs and she wouldn't want me to leave her, which, yes, obviously a lot of children go through that. But over time, we gradually realised that this was something that would stay for Zoe and carried on until the very day she left. So for 10 years, this was a daily occurrence for her. It really escalated when she went to senior school again. We figured, because it's normal to experience anxiety around the time you go up to senior school, we felt that it was due to this, but again, over time, we came to realise that it was more than that. She struggled with friendships. She always preferred to have one close friend, and then, obviously, starting senior school, that became a lot more difficult for her, and she immediately became isolated. That, with many other things, such as the noise and being around 1000 other people at this huge school, was just all too much for her. This is when we finally started to realise that maybe Zoe was neurodivergent, and I started to do my research. But at home, she's always been such a happy and fun girl. She has us laughing every single day. During the weekends and school holidays, she would be this girl, and she'd be relaxed, but as soon as it came to either the night before school or in the lead-up to going back to school in the holidays, she would retreat into herself again, and she'd just become extremely anxious.
Natalie Joyce 04:10
So this must have had an impact on home life because you're working. Jez is working. You've got a marriage, you know, both working full time. So what was the impact like at home for you all?
George Chamberlain 04:22
Yeah, there was quite a big impact on all of us, really. I think all our relationships, Zoe would only talk to myself. She wouldn't ever speak to Jez, and that's no reflection on him. Just I was her safe person, I suppose, because we've always been so close. So she would every night, at about 10 or 11 at night, sneak into my room, or she'd get me in her room, and she would just open up to me about all of her difficulties. And because I was the one that was getting her ready, or trying to get her ready, for school in the morning and do the drop-off, it was me that would see the anxiety. But Jez would not see this, so he couldn't really completely get a grip on what was going on. So you know there were difficulties between us two, on that and how to handle it. So it was tricky, and when it comes to work, that was also very difficult, as you can imagine, because I was coming into work every day having either left her at school screaming or I hadn't been able to get her into school, so I've had to leave her at home. It was really, really hard, and I would often come into work in floods of tears, trying to leave it out of the office, because I'm trying to be professional, but I am human at the end of the day. And the support that I have had at RiskSTOP has been absolutely amazing. I literally could not ask for better. In fact, I don't know how I would have got through it without RiskSTOP, because I think I was pretty close to a nervous breakdown, to be quite honest. And the support from my colleagues, who are friends. I've been here a long time. I have a lot of friends here. Everybody has been amazing. And really been there for me, helped me, let me talk about things where I couldn't at home, and honestly, I can't thank RiskSTOP enough for all the support I've had.
Natalie Joyce 06:21
I am so pleased that you had that support network of colleagues and friends at RiskSTOP Group to help you through that time.
George Chamberlain 06:27
Thank you, yeah, and thank you to you, Nat, as well, because you were one of them. And honestly, I will never forget it, and I will always be appreciative of it.
Natalie Joyce 06:34
Thank you, George. You've mentioned that Zoe's been diagnosed. Can you talk me through what the diagnosis process look like for you guys?
George Chamberlain 06:42
Yeah. So by year eight, which was 2022, Zoe was starting to become known for what is called a school avoider. She just couldn't attend school. She couldn't even get out of bed actually, by that point. I raised my concerns about her mental health, and it was hard to get any help from anywhere, really at that point. But after hours of research, I became pretty convinced that Zoe was neurodivergent, so I spoke to the GP, but he explained that the school had to do the referral. I asked the school, and they did do it when I requested this, but we were told that could take many years to get anywhere with this. Which was actually quite devastating, because without a diagnosis, you can't really access any help, as we know, and even then, with resources being so tight, there's still no guarantees, even with a diagnosis, that she could get the help she needed. So we were very lucky to be able to arrange a private assessment locally with a lovely Doctor who Zoe really took to. And that was at the start of 2023 and Zoe was diagnosed with autism a few months later. The report was really thorough, and it really explained a lot about her, her personality and her difficulties. It helped Zoe understand herself, and it really helped us, because we now know how to better support her.
Natalie Joyce 08:13
Thank you. You used a term earlier, autistic burnout. Can you explain what that meant to Zoe? Because this might help some of our colleagues to know what to look out for.
George Chamberlain 08:23
Yeah, certainly. It's something that I didn't know about myself until this happened to Zoe. But over a period of a few months, Zoe's mental and physical health spiralled, but because it was gradual, we didn't really realise what was happening at the time. It's important to keep in mind, though, that autistic burnout is the result of trying to keep up with demands that take too much energy and are unsustainable for somebody who's autistic. So the symptoms are very much like depression, but they're slightly different. So her whole body would be trembling, she would be physically sick at the thought of going to school, she wasn't sleeping, she wasn't eating, she wasn't doing any of the things she loved. Eventually, she couldn't even physically get out of bed, and she wouldn't engage conversation with anyone, not even us. She wouldn't leave the house. She only wanted to be in her safe space, which is her bedroom, still is her safe space. She started to talk about alarming subjects, such as, what was the point of her being alive. She was hallucinating and hearing things during the night; she'd have a complete meltdown over something usually she'd find insignificant. She became a girl that we just didn't recognise, and it was devastating to see her as a shell of her former self.
Natalie Joyce 09:46
Take a minute, there's no rush. Some heavy words there.
George Chamberlain 09:52
So there are certain things that can be done to prevent autistic burnout or recover from it, such as removing yourself from social interactions, if you're feeling overwhelmed or wearing earplugs to limit noise and interaction. Obviously, now we know about this, we can help her if this was to happen again. But at the time, it was really, really scary, and I feel like there's not really much knowledge out there about this and how to help someone, because it could happen to anybody who is autistic.
Natalie Joyce 10:21
How is Zoe now?
George Chamberlain 10:23
Yeah, she's brilliant now. Thank you. Yeah. She still has her struggles, obviously, and she always will, but I feel like because she can understand herself better now she's able to just deal with things a lot better, although she will always have certain struggles, like with noise. That's her main one. It's a lot of sensory issues for Zoe, but I've been able to explain to family and friends how it affects her, and they are now much more understanding as well, which has really helped. So for example, if she comes to a family gathering now if she needs to step out the room and get away from everybody, it's absolutely fine, and everybody knows why, whereas previously, none of us really understood what was going on, and people might have felt she was rude. So there's so many little things that we've done that help her. And you know, she's just as a happy girl now, really,
Natalie Joyce 11:16
That's really incredible to hear. I'd like to dig a little bit deeper into the process of deregistering Zoe from school. How did you find out about it, and what did it consist of?
George Chamberlain 11:27
Yes, so I'll admit I didn't really know much about it until I started researching and reading all of the resources. But home education is actually completely legal, and attending school is not the law receiving a full education, a full time education is but that doesn't have to be in a school environment. And I think a lot of people don't realise that. I myself didn't realise it until I did my research, and a lot more people now are opting for home education. I immediately joined a home education support group on Facebook. And as well as being full of parents who had been through or were going through similar there was so much advice on there with helpful guides, information and sort of like getting to help me know my rights, basically. I studied everything until I felt able to compile the letter to the school, which was quite scary at the time. And you don't actually need to give notice at all to remove your child from school. It can be immediate. And let me say, once you've done this, the pressure just lifts. But when your child is removed from the school role, the school will then inform the local authority, and the local authority will be in touch with you, and you can ask for advice, if you wish to. And once a year or thereabouts, you then need to submit evidence that full time education is taking place. And I choose to do this by way of a written report explaining what Zoe's learned and her areas of improvement in the last year.
Natalie Joyce 13:05
And I think one thing I'd really be interested to know about is around formal qualifications. Can you just talk me through that process?
George Chamberlain 13:11
Yeah, of course. So Zoe's able to do her GCSEs if she wishes to. It's just something that I would have to organise myself and pay for as well. And I think a GCSE is around £200 each. We're not actually quite sure ourselves how this is going to work for Zoe. As I say, she's only 14, so she would be in year 10 at school. She's going to go out and do some work experience next year, and we're going to revisit then. Zoe has some very vague ideas about what she might like to do when she leaves school, and we're currently looking into what, if any, specific qualifications she would need, and that's what we'll be concentrating on. I think it's very unrealistic of us to expect Zoe to do eight GCSEs like she would be doing at school. It's not really going to work for her. And doing GCSEs again is not a legal requirement. So really you're able to tailor this again to your child, but certainly you can follow the national curriculum if you wish to and do GCSEs, and as well, you don't have to do the national curriculum. So it really is depending on how you see your child's journey going.
Natalie Joyce 14:25
Absolutely incredible. I kind of witnessed you going on this journey. I looked into it a bit myself. The number of children being home-schooled has been increasing significantly in recent years. In the years [2022] to [2023] around 140,000 pupils were home-educated, which is a 12% increase from the previous year. So you've given us a brilliant overview of what the process looks like. What does it look like day to day for you and Zoe?
George Chamberlain 14:52
It's really not what people would imagine, I should think. Most people would compare it or think it's like COVID times where, you know, people trying to work, and their children were trying to log on and do all these different things with school. And it's not like that at all. In fact, you can make it exactly how you want it, and that's what we've done. We've been for a real journey. I've had to go through a journey more than anything, I would say, because I immediately tried to replicate school. So I was printing all these resources off for her and setting structures up for her. And I thought it wasn't working for her. And I thought, of course, it's not because we know the school system doesn't work for her. So why am I trying to do the same? So I did yet more research, and now we've found our groove. So because Zoe's in her own environment, she now feels happy and safe. And being autistic, she's got lots of hyper-fixations and special interests, and we tailor her education around these. So for example, if we're looking at numeracy, we can do some cooking, and that can provide opportunities for numeracy, with measuring and weighing, etc, and we're covering life skills at the same time. But then this can also incorporate literacy and even geography, if Zoe is researching recipes and ingredients. This is how we go on. And you can go down an absolute rabbit hole of information, and it's such a fun journey to do so. So much Zoe doesn't even think she's learning anything because she's having so much fun. So it really is amazing. And I'm not Zoe's teacher, and I don't need to be. My role is purely to be a facilitator, so I make sure to keep note of what Zoe's learning, and I help suggest, plan, find resources to support her learning. But there's so many different resources you can tap into now online. It's amazing, and I think we got have got COVID to thank for that, actually. But even things like YouTube videos and tutorials can be used for learning. Even things like Minecraft have huge educational value. When you start to think outside the box, you really start to realise that there's learning in most things, and you don't need to be sat behind a desk to do this learning. There's a whole world of information out there, and it's exciting going on this discovery with your kids. It's a huge opportunity for your child to learn self directed learning, which can only set them up for future learning in life.
Natalie Joyce 17:30
Just incredible. Thank you, George. Thank you, Jez, and thank you, Zoe. You've all been incredibly generous. Now I know you well, George, and I know that you'd be very happy to help others who may be in a similar situation. So can you just run through some of the areas that you may be able to assist our colleagues with?
George Chamberlain 17:47
Yeah, of course and thank you. I feel like I've learned so much, and I'd really love to help anyone where I can using my own experiences. I feel I can potentially assist with how to deal with school attendance officers, the processes around school absence, assessments for autism, deregistering from school, and what to expect, how to deal with the local authority, and how best to liaise with them and compiling the home education reports. I'm always willing to explain what has helped Zoe best and some of the ways and things we've done to help her in her daily life, really. I'm not a professional, and I would never pretend to be, but what I do have is experience in areas that are still pretty taboo, to be honest and stressful. So I'm here to say that there is hope and alternatives,
Natalie Joyce 18:42
And our colleagues can reach out to you?
George Chamberlain 18:44
Yes, I would love it if they did to be honest, yeah.
Natalie Joyce 18:47
Yeah, thank you. Is there anything else you'd like to add, George?
George Chamberlain 18:50
I just want to say really that to anyone going through something similar, just remember that you know your child best, so listen to what your gut is telling you, and remember that you're actually going through a stressful time too. So try to take time to care for yourself as well. And if anyone listening to this podcast is experiencing any difficulties, then I'm always available to have a chat, or I just have a confidential listening ear.
Natalie Joyce 19:19
Thank you so much. Really appreciate that, George. And that's all for this episode of our people at the heart podcast. Thank you everyone for listening in. I, along with one or two other presenters, will be back soon with all kinds of things to talk about with different guests. So keep your eyes peeled for more episode announcements on IRIS. And remember, here at RiskSTOP Group, it's all about keeping people safe and secure and believing in social responsibility and sustainability. Until the next time everyone, goodbye for now.
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