Episode 32 – Realising Autistic Burnout: A Personal Story for Neurodivergent Mums [Solo Episode] with Jane McFadden

Jane McFadden:

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Welcome to the ADHD Mums Podcast, a safe place for everyday Australian mums to discuss their struggles with ADHD, motherhood and life. Hello and welcome to the next episode of ADHD Mums. This is part one of the prevention and burnout two-part series.

Today, I want to talk about something so close to my heart. When I realised that autistic burnout actually had affected me, it was like hearing that I had ADHD for the first time by a psychologist. I had never put the dots together.

So eventually, when the ADHD medication unveiled some autistic traits and I started to really look more into that, I had this huge realisation one day that autistic burnout may have been something that had impacted my entire life. You’ve probably all had this experience where you’ve got your AirPods on, you’re washing dishes, you’re doing dinner, the TV’s blaring and you just want to take some time out to do something for you. For me, my special interest has always been psychology, so I love listening to educational podcasts and episodes and YouTubes whilst I do things around the house.

It’s actually a way of me regulating my emotions. So when I was listening to a YouTube video one day on the female autistic experience and I was hearing someone talk about burnout for the first time, it was like I’d been kicked in the guts because it just dropped for me. When you have that feeling of, oh my God, this is the answer.

I don’t need to look anymore. I know what this is. That was such a massive moment for me, but of course it was interrupted by children and needs and drinks and dinners.

After the kids went to bed, my hubby, who’s so beautiful, came to hang out with me, but I didn’t feel ready to share because I didn’t want him to accidentally invalidate me because I hadn’t thought about it enough and I was like desperate to just sit by myself for two hours. And then he’s like, what show do you want to watch? And there’s just never any time to process. And I know there’s a lot of people on this podcast that would have an understanding of that.

And I always talk about when you get the news of perhaps one of your children being diagnosed and you’re really thrown or you realize that possibly it’s come from you or some of the things that you thought were air quoting normal aren’t. And then you drive home and you have to do dinner and bath and there’s just no time to process anything. Sometimes I wonder if I’ll process everything in like 10 years time when the kids stop speaking to me because they’re all teenagers.

But for me, the realization around autistic burnout changed my life. And I’ve very openly spoke about my teenage years being the three to four worst years of my life, hands down. Despite living a very full life, my parents passing, it is absolutely still that time that I think about and I worry about for my own daughter who is nearly nine.

I reflect on it a lot, probably because of my daughter’s upcoming teenage years. And I try and figure out what happened with me, why my experience was so different to my peers and what could have been different. Long story short, this is a topic that’s close to my heart and I’m so passionate about other women and girls not going through this.

If I reflect on what I was taught as a child about myself, I think that has heavily impacted on the amount of times I’ve hit burnout and my default settings in my brain. This podcast episode is not about me. I’m sharing my experience because I think that there would be so many women who feel the same way and I want to articulate it in a way that validates your experience and maybe you get the same answers, the same drop that I had.

If I think back into what school and home taught me as a child, it taught me that if I continue to push myself, when I’m overwhelmed, anxious, stressed, exhausted, I will be rewarded. I will be rewarded with praise, hugs. I was rewarded with a lot of leadership positions around captaincy in sport.

I was school representative in each class, which felt like a massive deal back then, but isn’t really now. School and home taught me that my feelings around things weren’t valid and that I should ignore how I feel. I think number one is don’t complain or winch.

If you continue to be polite, do what the teachers ask you and go along with things that you don’t necessarily believe in, you will be rewarded. For example, I remember being a kid and I remember being in grade three and we had this awful teacher, Mrs Hughes, who was fairly old. She was very grumpy.

She probably just wanted to retire, really, but she had to keep working. She was clearly going through menopause. Not that I knew that back then because she had a lot of very strong hot flushes.

I grew up in Tassie and she would always have the door open and the windows open. We would go through that funny season change where you’re wearing your summer uniform and you can’t wear out the winter uniform yet, but the winter snap sometimes comes a few weeks early. You either go through that period of being really hot in your winter uniform or really cold in your summer uniform.

I remember thinking to myself, I have never been so cold in my life. We were all shivering. In fact, we were sitting together in huddles like kids I didn’t even like.

I didn’t want touching me. We were literally going for body heat. I remember someone asking her if we could shut the door.

She said, no, it’s not cold. I don’t know what you’re talking about. We were also confused because we all had the same experience of being cold, but yet she was telling us it wasn’t cold.

I remember going home and telling my mum, I’m just so cold. I have to have a shower. I remember my mum and dad saying, don’t complain or whinge.

It’s school. Wait till you’re an adult. You think it’s hard, wait till you’re an adult.

That was the way that people were parented in that adults were right and children were wrong. Go along with it and don’t complain. My dad was a roof plumber who worked incredibly hard.

I remember going to the chiropractor with a dislocated shoulder in grade six. I had been playing netball all day at a carnival. I was a goal shooter, so they would pass me the ball clearly and I would shoot the ball.

You can imagine that’s catching, throwing and shooting all with your shoulder. It was only halfway through the carnival, I think it was like my third game, that I started to catch with one hand and shoot with one hand. Eventually, my mum took me to the chiropractor a few days later.

To be fair to her, I hadn’t really complained. The chiropractor said I’d actually dislocated my shoulder and he couldn’t understand why I had not said anything earlier. I felt like the message to me was, don’t complain, suck it up and go along with it and be good.

That’s where I think a lot of us have received our people pleasing tendencies and you receive so much praise and positive feedback for that. School taught me that if I did what I was told or what the class were doing or what my peers were doing, I would be rewarded. I was given a lot of praise and feedback.

My parents taught me that every subject report had to say I did my best and that was what they were rating everything off. Because I’m so literal, as a lot of autistic people are, when I hear, do your best all the time, all I hear is every moment of the day, I must do my very, very best. I had no idea that my half effort was probably someone else’s very best effort.

I’ve carried that through my whole life and to do your very best all the time, that’s exhausting. That is a really, really exhausting thing to be doing. I feel like the messages taught me that if I worked at my own pace, the pace that my body or my brain told me would be better for me, that was too slow and it would be disappointing to people around me.

I feel like a teacher or a parent would have their idea about what was acceptable if I didn’t meet that, it would be then I was a disappointment in some way. I’m 37 now, so if you’re wondering how old I am, I’m talking about going to primary school in the 90s. I feel like back then, school was more like, don’t listen to your body, do what I’m saying in a structured way.

For example, I remember asking to go to the toilet and I’ve been told you should have gone to recess or lunch, or if I needed a drink and I was thirsty, you should have had a drink already. I remember clearly there was a girl in grade four and we were doing choir and she asked to go to the toilet and they said, no, you should have gone at lunch. She actually wet her pants at choir in front of everybody.

We’re in grade four, so she would have been what, like 10? That’s embarrassing, hey? When she did it, I remember feeling so sorry for her. I don’t remember her being teased after because I remember thinking that was hands down that teacher’s fault, but the teacher told her that she should have said if it was urgent and it was her fault for not saying it was urgent, but she asked to go to the toilet and she was told no. I don’t know what else she was supposed to do.

I remember feeling so confused and it felt like everything in school was the child’s fault. I didn’t feel like any adult ever took responsibility for any mistakes that they made. I think the expectation on children to go to school five days a week, no matter what, to be a really confusing thing.

I feel like school taught me if my body was telling me something, it was less important than what the teacher said and that felt like what the school rule was all the time. When I talk about that now, I often get a lot of the old traditional views around me and those views include, for example, the reason that we do that is to prepare the young children for high school, to prepare them for the real world, to prepare them for the workplace and if we don’t prepare them for adulthood in the workplace by teaching them to ignore what their body is telling them and suck it up, then the child will be worse off. This attitude is supposed to make us better able to cope with the world.

My personal opinion is that neurodivergent children need a safe place more than any other child. They need a space to unmask and they need a space for them to be okay, to ask for what they need, to be unreasonable and this is why so many of us have children that fall apart in the car on the way home or fall apart all afternoon. They don’t have any yeses left, they don’t have any compliance left and if I ask one of my children to unpack their lunchbox and put it on the bench, it’s like I’ve asked them to do the most unrealistic thing but then the people around us say, well, that child at eight years old should be taking their lunchbox and putting it on the bench but are we taking into account that child’s day? Are we giving them a moment? Are we letting them decompress first and letting them know that whatever’s left put into the rubbish bin and put on the bench before five o’clock and maybe they’ve come home at three o’clock and we’ve given them two hours to decompress or are we continuing to hold that they must do that as soon as they arrive home, not understanding that they don’t have anything left in the tank at that point and this is why I wanted to talk a little bit around burnout and the perspective of the child.

Imagine if when you got home and you had a massive day and someone stood over you, let’s say your partner and said you have to unpack the dishwasher right now and you’re like but can I just go to the toilet and just chill out for a bit and they’re continuing to hold up that demand. I wonder sometimes when we talk about neurodiverse children, some children do have the extra conditions that make it more difficult like PDA, pathological demand avoidance, that absolutely is a thing but I wonder sometimes if our timing could be a little better as parents too because I feel like they go through a lot when they’re at school. When I hit burnout it nearly killed me and it was not identified as burnout.

It presented I suppose like anxiety and depression, not that anyone knew what anxiety and depression were back then. I remember them explaining it to my parents who were very confused why a 14 year old girl that they believed had everything in the world and they weren’t far off would possibly be depressed considering that they were working, busting themselves to give me a great life and I was there depressed and why? I wasn’t identified and I was given medication that’s now off the market for causing suicidal tendencies and I feel like the expectation in high school to catch a bus at 7 30 in the morning, get back at 10 to 5 in the afternoon, every single day, five days a week was possibly a little bit much for a 13 year old neurodivergent girl, not that anybody knew what neurodivergent was back then. I did feel like no one ever asked me if I was okay or if a teacher did ask me, are you okay? They asked it in a way they want you to be okay because they don’t want to do anything but they feel like they should probably say something.

I was screaming for help but I also feel from a burnout perspective, I believe I was in burnout. I don’t believe I had depression, anxiety necessarily at the beginning of the burnout anyway. I believe I would have been fine to work at a slower pace but my brain doesn’t work that way.

I’m almost my worst enemy because of my experience as a child about more and more and more productivity and doing my very best every moment of the day and getting the dopamine off, the report cards, the teachers, the praise. I had learnt by that point when I got to high school to ignore my body. I didn’t realise that you could slow down, that didn’t seem to be an option.

Even if my parents gave me a couple of days off, I’d beg them and they’d give me maybe Monday to Wednesday off and tell me I had to go Thursday and Friday. I would feel a massive sense of relief for the first 24 hours and then I would feel impending doom as I knew that Thursday would arrive. But why can’t we give children a break? Why aren’t we allowed to slow down? Why is the world so fast-paced? And I believe that at school it’s a dream to have a child who is so conscientious.

That word was repeated all through my school report cards. There is no one word that would have been repeated more than conscientious and that made it difficult for me to be diagnosed with ADHD even as an adult. You can be incredibly conscientious and perfectionistic and driven by anxiety and have ADHD.

You don’t necessarily need to have a school report card that says talks too much, distracted, underachieving. I did not have one of those report cards. In year 11 and 12, I eventually went back to school and I ran courses and clubs every day at lunch.

Again, overachieving and I wanted to do it all the time. I had no idea how to just be and let time pass me by. And I think it’s also a very autistic thing to want to be involved in a club or productivity or anything structured because the feeling of just playing or just hanging out felt for me unproductive, but also could feel overwhelming for someone else about what to do.

And every autistic person is different. Every ADHD person is different. I’m just talking about my own experience generally that may not be yours, but it’s not necessarily the typical experience either.

And I think it’s an experience that’s often missed in the diagnosis process. My parents also really encouraged me to work and I would work from four o’clock to nine o’clock after school most days. So I would go to school 7.30 in the morning, I would catch a bus to work and then I’d get picked up at quarter past nine, not having been home since 7.30 that morning.

And I did that day after day after day. And when I would hang out, it was for the purposes of getting drunk. So really when I strip it back, I wonder when people say that we’re getting a child in primary school ready for high school, they’re getting them ready for the everyday life, they’re getting them ready to work, they’re getting them ready for the hard knocks of life.

Are we getting them ready or are we traumatizing them? That would be my real question if I was to go back to it, because I would question what is resilience building and what is traumatizing. And I don’t think there’s enough people that know what the difference is. I didn’t realise I had anxiety until I started interviewing people on this podcast and I felt so validated.

The reason I didn’t know I had anxiety was because I thought that high levels of anxiety was normal. And I thought that’s how everybody felt. When people were talking about how they went through periods of anxiety and what it felt like, I remember interviewing someone and saying, oh, so what was the anxiety like? Not realising I completely invalidated her.

And she said that was the anxiety period. And I actually said to her, I’m so sorry. I thought that was normal.

And she said, no, that’s anxiety. For me, living with high levels of anxiety felt completely normal. And it never occurred to me that if you’re experiencing high levels of anxiety, that may be a sign to slow down a little bit or make some changes.

That felt like you should just keep going at the same pace. However, it’s very difficult to make that change. And I don’t pretend that I’ve made that change.

I feel like I’m going to spend most of my life unlearning everything that I’ve learnt at this point. Because I think our approach to schooling and growing up back then doesn’t work. And it didn’t work for me.

And I think it’s a progressive space that we’re still moving into. So my experience isn’t the fault of any teacher or parent or family member. It was just the way it was back then.

And things aren’t going to change unless we start to do things differently. We know that babies come into this world and they will cry to tell us that they’re hungry or lonely or scared. But it feels like as children, we are beaten down a little bit emotionally and told to stop asking for help.

My belief and my goal would be that a child should leave primary school knowing who they are, how they learn and how to communicate their thoughts and feelings and how to listen to their bodies and the signals that their bodies are giving them. For me, preparing somebody for high school and for everyday life comes down to that. And it’s not about preparing them for the hard knocks of life.

It’s preparing them for how they cope, what to do if you aren’t coping, and how you as an individual learns and feels and what makes you feel good. I believe one of the key learnings here is around self-reflection. And I am so passionate about the internalising presentation of a neurodivergent child, male or female or gender diverse, where the struggles are hidden and the impending burnout is hidden and we stop noticing it because it becomes our normal.

We don’t even know we are struggling sometimes and our children don’t either. If we ask them if they’re okay, they may say yes because they actually do not know whether they are or not. I feel like babies and young children cry, but older children stop.

And if they aren’t heard, they stop asking. For example, if we have a five-year-old that tells us that it’s too loud in here, they’re overwhelmed, their shoes hurt, and we ignore their needs and tell them to put their shoes and socks on because that’s life, they stop asking. If we can’t help our children with the little things, then why would they continue to ask us as they get older?

Because I feel like from a child’s point of view, they’re thinking to themselves, if you’re not going to be able to help me with my shoes, why would I ask you about anything different or anything else? And sometimes as parents, I wonder if we think, well, that’s a small thing, but if my child asked me something larger or something bigger, I would definitely assist with that.

But from a child’s perspective, if you’re not helping with the little things, then why would they ask you about the big things? I have a people-pleasing daughter who has two younger brothers who are hands-down hard work, and I watch her put her needs last. If I give her a drink that she doesn’t like because I’ve forgotten, she will drink it because she doesn’t want to bother me.

And that’s how it starts. Even though she is the least maintenance in some areas, I have to ensure that I take her out by herself to make sure that she gets what she needs. And I have to isolate that for her because she will not ask. And I think she’s a good example because she has needs, but she doesn’t ask, and she will suppress her needs to make sure that I’m okay, or my husband’s okay, or she’ll try and wait for me to be not stressed out or tired.

I can see her watching me, and then she’ll put something away and not want to ask me for help. So I have to go out to her and let her know that that’s okay. She’s just as important as everybody else.

If I’ve got two boys who are fighting down to the death, yes, that has to take priority in the moment, but because they are disruptive at times, that doesn’t mean that she needs less time. And that’s what I believe is in the classroom that needs to change too. Just because she’s sitting there doing a drawing doesn’t mean that she doesn’t need that attention.

She’s just not asking. At school, if a child says I’m too tired to do the sport, it’s too hot, the teacher says, come on, let’s go. And it might be coming from a place of engagement and trying to get the child to participate.

But I wonder what message that sends a child around, whether they are legitimately too tired or their ankle does hurt. If we enroll a child in an expensive extracurricular and they promise they’re going to do it, but then week three, they’re too tired, and that’s happened to so many of us. The amount of money I’ve wasted on extracurriculars that we haven’t attended is ridiculous.

But as parents, it’s really easy to say, well, I paid all that money for that, and you’re going to be going. And to say to the child, that’s it, you have to go. My goal for my children is to have them listen to their bodies and have them understand when it is too much.

And that then has changed my behavior. We’ve really limited the amount of extracurriculars. So I’m not in a position that I’ve paid for an expensive extracurricular that they’re not attending.

And they’re not in the position that I’m critically looking at them when they don’t attend what I’ve paid for, or letting them know that they must attend every week, and then pushing them through it. Preventative mental health treatment doesn’t seem to be really okay. We may be told to seek help if we’re in a crisis, but then I feel like still we’re kind of othered.

Go over there with your problems and come back when you’re all better. And I feel like if we were more able to talk about how we really feel, the world would change and it would be more acceptable. And preventative mental health treatment would be more taken up on.

Thank you so much for listening. This is going to be the first of the two-part series. Till next time.

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