Episode 33 – Preventing Autistic Burnout: Practical Tips for Neurodivergent Mums and Their Children [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 ADHD Mums Podcast. This is the second episode of burnout prevention and how we can be more mindful to prevent burnout.

Autistic people struggle with interception at higher rates than the general population and it can make it really hard for us to recognise our own body signals and it can lead to stress, anxiety, difficulty regulating our emotions, difficulty processing emotion and also empathy and perspective taken. So that’s more in regards to an autistic experience where it’s difficult to understand other people’s perspectives. Interception can affect people with ADHD or people who are autistic or neurodivergent as a whole and it means sensing the internal signals from your body.

It can be for example toileting, thirst, hunger, pain, fatigue, anxiety, anger, irritability, fear, sadness and a lot of us have got children that have been quite difficult to toilet train. A lot of you would identify with the experience of being at a supermarket and suddenly your child urgently needs to do a wee and you’ve got a half full trolley. You’ve asked them 20 minutes before, they’ve said they’ve not needed to go.

Suddenly they’re there and they’re basically about to wee on the ground and you have to locate a public toilet and just completely leave your trolley and it can be a really frustrating experience. Toilet training one of my children has been very difficult in regards to their ability to feel the sensations of needing to do a poo and then having the constipation effect from that and then understanding when to go has been a really, really long process for us. Another one of my children never remembers to eat and then he’s in a really awful mood.

It has taken me years to realise that he does not know when he’s hungry and when he was young he cried for six to eight hours a day. Take that in, like six to eight hours a day he cried and it’s taken me a lot of healing to be honest because I would just get cold shudders when he would wake up from a nap or something because I’d be like, oh my god he’s gonna cry for the next eight hours and I’ve got two other children. It was horrible to be honest and it’s been difficult to heal that relationship back with him but actually I ended up tracking his crying and making a diary because I didn’t know what else to do and I actually tracked that a lot of the time he was hungry but when I realised he was hungry I thought the solution was just to offer him food that he liked which you think would work right, he still wouldn’t eat.

Even now it’s difficult to get him to eat when I know he’s hungry so picking him up from school can be really difficult and he’ll just withhold if it’s not something that he wants but then his mood is horrific and it’s that sense of he doesn’t actually get that he’s hungry, he needs to eat. I have another child that just wears a jumper all day in Queensland, all day in summer and they just don’t realise that they’re hot so I think there’s that at play but there’s also that if they do realise there’s an issue sometimes the way the world works that we then invalidate that child so if someone says it’s too loud in here we’ll say no it’s not it’s fine or it’s too busy in there or I don’t like the feel of that, I don’t like the sand well what do you mean we live in Queensland it’s a beautiful day come on let’s go boogie boarding or what do you mean you won’t sit down on the sand we’ll just get that towel and the child goes the sand in that towel we go oh just wash it out just pick it up and give it a shake the sand will come off and it’s that way of invalidating how they feel that they then don’t trust themselves moving forward.

So as an adult now one of the things I’ve realised is that there is what I think is impending burnout where you start to realise that you’re feeling burnt out your body is telling you that but you can’t recognise the signs for me I actually cannot recognise the signs this isn’t me coming from a space that I can do this this is me realising that I’m actually not able to do this and this is why.

So for me and for most neurodiverse people we have different levels of functioning and some days we can do something and some days we can’t so if you have a child that picked up their towel off the ground and put their clothes away one day that doesn’t mean that they can do it the next. Sometimes I can cook dinner and have it on the table and I’ve done all the washing and I’ve done all of that and other days I’m either really focused in my work and I don’t do anything or I forget or I don’t see it’s important or I’m so time blind I forget about a meeting I plan to do it I’ve done something else and I have a completely different way of functioning one day than to others and it can make it really difficult for planning for a family when you have neurodiverse people in your household and you’re planning for everybody.

I think the practice of saying no has been a really big realisation for me we all talk about saying no but I think if we talk about some examples even if I have a therapist appointment for one of my kids that is really important and we have a lot on that week I can look ahead now and go the cost benefit of that therapy and me getting them there and then wanting to attend and how that’s going to feel on the day I’m just going to cancel that now and give that person that notice period.

Just planning a little better has been a really big learning curve for me instead of looking around at how other people function what they’re able to do and feeling like I should be doing that too. Balancing the needs of a whole family who are neurodiverse can be really difficult they have different demand needs I have a child that needs a lot of downtime at home and I have one that needs to be doing stuff all the time that is so difficult to navigate because you’re constantly not wanting to drag the child that needs downtime with you but you’ve also got the other one who’s incredibly bored. Building in a way to encompass everybody’s needs is important but when I say everybody’s needs I mean everybody’s I don’t mean just the child’s.

For me it’s easier I think at times to just focus on the child and there’s been times where I’ve realized I need to focus more on myself because if I’ve got my three children’s needs I’ve got my husband’s needs and then by the time I finish doing all that I’ve got nothing left and that doesn’t feel right either. Yes the children are important but you’re important and every person in the household is important.

Jane McFadden:

So what is burnout? It is a prolonged state of intense fatigue, decreased executive functional life skills and increased sensory sensitivity.

Self-care is basically ways to incorporate care routines into daily life and setting aside time for special interests or hyperfocuses or things that you enjoy. If you are both autistic and ADHD be aware that it can be really hard to wind down. For me my wind down time is doing something but I have to force myself to do things that aren’t productive.

So for example doing stuff is easy because productivity is easy, that’s my default setting but that often wears me out at the same time. So it’s difficult for me to just sit down and do nothing but I’ve tried to build in things into my life that involves me doing something that’s also enjoyable for me. For example maybe that’s going for a walk into nature, maybe that’s reading a book, maybe that’s swimming, maybe that’s riding a bike, maybe that’s going to the gym.

So some people find that self-care is booking in a yoga class every week or going to a whole day health retreat. For me that seems overwhelming. So think about the micro moments that you can do rather than the big events because if you continue to wait to have a whole day to yourself you may be waiting a really long time.

Being mindful I think is a really big part of impending burnout and noticing the signs and it’s that tuning into the body and being aware of the present moment and what you need that I think is really missing with burnout because if we’ve been taught for years and years to ignore those signs, to ignore those slowdown messages that we don’t have to do our best every time then the next thing you know we’re in burnout constantly and then maybe we have a massive period like I’ve lived nearly 10 years of working for six months around the clock and then having to have six months off. However that consistency and balance that we all strive for is actually listening to your body and chunking things down and being okay with not getting it done all at once.

So think about things that you can do and maybe it’s just sitting down and eating lunch without your phone or driving around with the music off and noticing your surroundings or watching your children play.

A lot of people get a little bit confused with burnout and being tired and imposter syndrome. They go oh I’m not really in burnout I’m just like tired or just need to rest for a few days I’ll be right but I think the thing with burnout is that your brain can actually switch off. In March this year I hit a huge burnout and I didn’t go and seek the psychiatrist care that I should have probably because of my experience as a child seeing psychiatrists.

I do struggle to trust practitioners particularly with my own mental health and when I went and did some testing with a clinical psychologist I actually came up borderline intellectually impaired in regards to memory because my brain had actually stopped working. She couldn’t believe the lack of function that I had in some areas. It’s not just being tired proper burnout is like a full shutdown and it takes a long time for me to rehab it and the longer that you leave it the longer the rehab is.

So in the perfect world you would feel the sense of burnout that you need to slow down take the time that you need take the foot off the accelerator and not go into burnout. If you go into burnout then the best case scenario would be that you stop take that time that you need you rest you recuperate and you start to rebuild slowly from there. A lot of us continue to do what I do which is I go into burnout I don’t feel the signs my default setting is to do more and I continue and continue to really flog myself until I get to a point where my brain shuts down and at that point I take my foot slightly off the accelerator and try to give myself a few moments here and there and then I sit in this perpetual state of half burnout because I never properly come out.

That I believe for me and I’m not sure if this might be your experience too is as women I think that’s linked to people pleasing and to perfectionism. I am important because of what I do and that has been for me a really big thing around relationships where I would find somebody that I’d be very interested in and become what they needed career-wise, work-wise, wife-wise and figure out what they’re not good at what they need and become indispensable to them because it wasn’t about me being me and that being enough it became about what can I bring that they can never leave. That’s a hard thing to admit but that has been my experience of relationships.

So what I have been trying to do lately is to do things with no end result, no productivity, no big interest, no big dopamine at the hit of it. Just doing little things that have got no purpose. The purpose is for me to be happy and that might be having a cup of tea outside, going for a walk as I discussed before but I’m trying to do self-care that doesn’t involve creating something for someone else.

So for example self-care isn’t going to the shops and buying my children things that they need for school or going shopping and buying things for the house or self-care is not unpacking the dishwasher and having everything ready with a podcast. Proper self-care is things that are only for you, that you enjoy, that are for the primary purpose of yourself. This has been a really important thing for me to teach my children that that’s okay and this is to teach my daughter that it’s not about what you do, it’s about who you are.

With my children, I attempt to model for them in the best way that I can, teaching a child that a mistake is okay. For example, if I drop something on the ground, I always make sure I say, oh that’s okay, it was an accident, doesn’t matter, I’ll just clean it up. As opposed to mumbling under my breath, you’re an idiot, how stupid, I can’t believe you did that.

Because for my children, if they drop something, I always say to them, that’s okay, we can fix it, it’s not a big deal because they’re so sweet and sensitive, they get so upset. But I don’t want for me to be saying to my child, hey that’s okay that you dropped that, I’ll just clean that up. And then have them watch me going, oh you’re such an idiot, Jane, can’t believe you did that under my breath.

Because what will they do when they drop something? They will do the same thing that I have done. They are watching us in how we speak to ourselves. So if we say to them it’s okay to make a mistake, but when we make a mistake, we’re not okay with it.

That’s the message that they receive. They don’t receive the message of, oh it’s okay, don’t worry about it, hon. What they see is our dialogue that we say to ourselves.

Jane McFadden:

One of the things that I do with my daughter is I ensure that it is actually impossible for her to overachieve and do too much, in that it’s not an option. She’s only eight and I don’t create options for her to burn out and become overwhelmed and do lots of things. One of the things that I’m most proud about in my parenting is that I have really taught my daughter how to be aware of herself.

And that comes from having her diagnosed and explaining that to her from an early age. She has an understanding of what she needs and how she feels. So for example, she recently got an invitation to Aussie World and it was for a friend’s birthday party.

It was a Saturday and it was actually school holidays. And I thought, oh my God, I don’t even want to go to that. I don’t know how she’s going to go.

And when we spoke about it, because obviously the parent, one of the RSVPs, because you’ve got to pay per kid, totally get it. And I sat down with my daughter and I said to her, this is what it’s going to be like. And then she said she was going to go.

And then a day later I said, I’m going to let the mum know. Have you thought about it? Are you okay? And she said, actually, can we just have my friend over? Or can we go not in the school holidays, on a weekend, just me and her? Because I don’t think I’m going to be okay there.

I have never been so proud in my life of her decision and the way that she could understand what she needed and make that decision for herself. She’s also said to me really openly, she can only do one extracurricular a week and that can be a really tough choice for her as to what to pick. But she understands that she needs a lot of downtime.

For example, school holidays, I used to book her into a lot of programs and she can’t do that. Or she doesn’t want to do that. That’s not what her body needs. And I feel like we think that our children are taking us for a ride or they’re taking advantage of us.

I haven’t noticed that with my kids yet. Maybe that’s because they’re younger and they’re not teenagers yet. I’m not sure how this will play out moving forward.

But at this age, I haven’t found that to be the case at all. She’s eight going on about 17 or eight going on probably not even 17 without a G, she’s eight going on 25. And I treat her as an adult because she communicates as an adult and she’s incredibly self-aware.

I let her make decisions about what she wants. And I often find that she makes the right decision. And when I mean right, it’s a decision that I probably would have made for her.

But having her being a part of the decision making process has been really big for us because I’m also aware that moving forward, she will be her own decision maker. She’s eight, yes, but I’ll turn around twice, she’ll be 16. And if I’m telling her what’s the right thing for her, how will she ever think for herself? So building those skills early, I think is really important.

However, my seven-year-old son, I would not let him make his own decisions quite yet. And that might be a gender thing in terms of maturity, but I think he will take a lot longer to be able to make his own decisions and make decisions that are really healthy for him. And it’s obviously an individual basis.

I think as well in terms of burnout, we really need to have a look at the sensory sensitivities of ourselves and our children. Is it noises? Is it shops? Is it sensory in terms of how clothes feel in our body? Everything’s adding layers of stress and taking a child or going ourselves, let’s say to a trampoline or an indoor play centre and then backing it up on a play date may be too much for both ourselves and our children. And continuing to put our children in environments that are difficult for them sensory-wise, we just have to be aware that we’re adding to stress.

So for example, one of my children struggles going to shops. So I know that if I take him to the shops every day after school just to get a few meat and a few things, I know that that adds to his stress levels. So I either go before I pick him up or I don’t take him because I know that that adds layers to him.

And it also adds layers to me too. I absolutely hate shopping. And I think it was, when was it? I think it was a Sunday afternoon.

So I’d had the kids Saturday, Saturday night, like, you know, felt like a long time, right? It was, I know it was just a weekend, but Sunday afternoons I’m usually cooked and I realised I hadn’t got some stuff that my kids needed for school. And I accidentally, well not accidentally, I shouldn’t have done this. I took my daughter with me.

And it was a mistake because she loves shopping and she made me go to like seven shops. I was so exhausted and she loves looking at everything. And I was like, oh my God, this is just like ruining me.

And by the time I got home for that evening, I just felt really snappy and overwhelmed and I needed to have some downtime on the Monday. So being aware of ourselves is really important. And I think if we have a massive weekend with our kids and sport, and that’s probably the two hardest days of our week, backing in a massive Monday, I used to work in Brisbane.

I used to drive two hours to the office, work eight, 10 hours and then drive back. So I’d be doing a 14, 16 hour day on a Monday every week. And I just pushed myself through the Tuesday working from home.

But I realised by Thursday, I just felt exhausted all the time. And it’s being aware of ourselves and what we need and our sensitivities and our children’s as well. And it’s tricky to factor it all in, but it’s just something to think about when we talk about protecting from burnout, because it’s so much easier to teach our children who they are.

And if you’re wondering about sensory sensitivities, I’d recommend going to an OT and doing a sensory profile, particularly if you’ve got NDIS funding, I think a sensory profile can be really helpful. So you know what’s actually affecting your children, because remember, it can be difficult for them to feel it and explain it. You may find, for example, your children find it really beneficial to have sensory toys, to hold a ball in their hand.

I’ve really noticed even doing these podcast interviews, that I’ve got a few of my children’s sensory toys. And it’s unbelievable the way that it actually calms you right down. I had no idea. I was like, oh, that’s just for children. And then one day, my daughter was like, oh, do you want to hold one too? We’ll hold one together because she’s so sweet. She wanted me to have one too.

And I think we went to the movies and she took one with her. And I squeezed this ball the whole movie. I felt so relaxed.

And I’d never even given myself the grace and the space to allow myself to do that. Yet I have given my children these sensory toys, prioritised and put them in their bags, but never held one myself. And sometimes I think the way that we view productivity can really impact that too.

And that’s, I think, a society belief where we praise each other for getting it all done. And if someone says they’re busy or they’ve just done something amazing, we give them praise and feedback about how great they are. Or how do you do it all? But yet their praise doesn’t seem to be there for people that take the day off or for the people that slow down or prioritise themselves or take a week off just for them.

Society doesn’t reward that in the same way. And sometimes I find that even if I’ve had a quieter day, my husband will come home and I’ll tell him I’ve been busy even if I haven’t been. It’s like a programme that I can’t turn off.

Jane McFadden:

Some of my favourite memories are camping as a child and my parents just sitting around and us not doing much because we were camping and you can’t do housework. I remember a school holiday period when I was in grade 11 where I didn’t leave the house except for going walks with my mum. I remember starting full-time work and Friday night, nine o’clock I would go to bed.

I would wake up at 1pm because I’d be so shocked from working 50 hours a week in an office in a fast-paced social environment. And there was never any thought of doing any self-care. So in summary, I think mindfulness and listening to our bodies and being more present and teaching our children that that is the way that we avoid burnout is the most important thing that we can teach them.

I don’t think taking respite and taking long periods off after we’ve burnt out is the answer. I think the answer is the preventative. It’s the daily, it’s the planning, it’s setting the week up differently, setting the day up differently and listening to our bodies and recognising the signs and listening to our children.

And it can be very inconvenient when a child really needs a day off. But one of the ways that I handle that is I try to recognise the signs before it’s critical that one of my children is needing a day off. And then I try and build that in in a day that suits me.

So for example, I’ve still got my five-year-old who’s repeating kindy with me one day a week. So the other day I gave my seven-year-old the day off on the same day that I already had my five-year-old because it was not really a big deal for me to have two rather than one. I would have preferred to have one but I also didn’t want to give the seven-year-old a day off when I was actually supposed to be working and it didn’t suit me.

So trying to build in times that suit you, prioritising our children, recognising the signs, teaching them to recognise it and then creating space for them is so important. I really hope that this episode has really resonated with some of you around burnout and it can be both autistic burnout and ADHD burnout. Thank you so much for your time.

I appreciate you listening. Till next time. The key message here is you are not alone.

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