Kate’s Voice - The Lessons I Learned From My Child's Autistic Burnout

Meet Kate.

When autistic burnout turned their world upside down, one mother and her family were forced to reevaluate everything. In this heartfelt story, she shares how they’re navigating grief, guilt, self-care, and creating a life that finally feels like their own. Kate currently has her own blog called Otherwise Kate, I encourage you to check it out!

The Summer Everything Changed

When autistic burnout hit our family in the summer of 2022 it felt like our whole world turned upside down overnight. After masking all through primary school, my wonderful boy spiralled towards a breaking point I hadn’t even known existed.

Until then I’d never heard of autistic burnout, despite having autism training throughout my twenty year teaching career. Now, although it’s not a journey I would wish on any other family, I can see it as the catalyst that led to me designing a life I love.

Before Burnout

We’d always suspected that our son was autistic and he’d never been a fan of school but that aside, we had such a happy little boy. One in a gazillion! We were living the life I’d always dreamed of - family holidays, days out with picnics and adventures and swimming in lochs.

It was only in the final term of primary school that we began to understand the extent to which our boy had been masking at school. We watched with worry as his (undiagnosed at the time) Tourette’s symptoms increased dramatically and his anxiety began to really impact his quality of life.

Breaking Point

Over that summer, as we prepared for the transition to high school we realised that something was very wrong. We didn’t know it at the time but autistic burnout had hit. Hard. All those years of masking and used up all of his resilience and he just couldn’t do it anymore. 

Suddenly, our days were about survival. Favourite places became no-go zones. Jamie only felt safe at home. Sleep vanished, along with friendships. It was completely and utterly  heartbreaking. Still uninformed about autistic burnout, all I knew was that my lovely boy was broken. 

Autistic burnout can look different for everyone, but for us it included physical and mental exhaustion, heightened sensory sensitivities, anxiety, insomnia, and a desperate need for comfort and routine. It required us to start living a very different life.

I recall explaining to his new school, who have thankfully been supportive,  that our only aim at that point was to prevent any further breakdown. Education was the last thing on my mind. We were living in crisis mode. Meanwhile we also had to try to maintain some sense of “normality” for our teenage daughter.

The Grief

After crisis mode came the grief. I grieved the life we’d had. I missed the travel, the days out, family meals, time with friends, weekends away. I looked at other families on social media and felt painfully shut out of the happy, “normal” life I thought we’d lost forever.

It’s hard to describe the helplessness of watching your child struggle with something you can’t fix. The mere sight of other 11 year old boys walking to school or out with friends instantly brought a lump to my throat and tears to my eyes. It all felt so unfair.

The Guilt

The guilt didn’t take long to attack. Should we have pushed for his autism diagnosis sooner? Taken him out of school sooner? Listened to him on all those mornings that he begged not to go to school?......Could we have prevented this?

I’ll never really know, but what I do know is that in future I will listen to my gut and to my kids and act on what they tell me.

The Shift

Burnout can last weeks, months,  even years. For our son, it’s still ongoing nearly three years later. We are making progress even if it sometimes feels like one step forward, five steps back. And yet, in the wreckage, I’ve managed to find some glimmers and make some positive changes that we otherwise wouldn't have made.

I’d spent my whole life conforming to what was expected: get a good degree, build a stable career, keep the family ticking along. Everything was very respectable, consistent and predictable.

But it didn’t feel right. Even before burnout, I had been feeling very unsettled in my career and I hated that I was forcing my son into a school system that was slowly breaking him just because “children must go to school.”

Autistic burnout ripped all that away. It may have come crashing into our existence like a grenade but it had also allowed us an opportunity we didn’t even realise was possible - to piece together a life that was right for us. A life that would make us happy. There was no boldness or bravery involved in the big decisions because they had been made for us: Jamie couldn’t go to school so I couldn’t work. I wouldn’t wish this journey on any family, but for us, it forced us to stop living by everyone else’s rules and learn how to live a life that was truly aligned with our values.

Learning to Live Otherwise

In those early days, I felt hopeless. I was so used to making plans and having things to look forward to and I couldn’t imagine life being like that again. Then I came across an idea from author Mo Gawdat: if you can’t have what would make you happy, ask what would make you happier than you are now.

What would make me happy? A family holiday. Stepping onto a plane. But how could that happen when my child could barely leave the house?

I realised that even though I was unable to do the thing that would make me happy, I could think of things which would make me happier. I’d also realised that this was not a situation that could be fixed quickly and that we couldn’t exist in crisis mode forever.

With encouragement from my husband and my mum, I started to take little breaks away with my daughter, or with a friend. The mother’s guilt was crushing. I lay awake at night wondering if I was abandoning my family. But those trips were crucial reminders that I was still a person too, with dreams and interests of my own. 

The other thing that helped hugely in this journey was discovering that we weren’t alone. So many families are navigating the same hidden struggles. The relief at finding other parents who understood, both in real life and online, was immense.

Taking Back Control

I’d lost my own dad at just 57. I’ve carried the lesson that taught me through my whole adult life: life is far too short and far too precious to spend it being unhappy. So we changed the way we live.

We went from two incomes to one. From two kids in the conventional education system to one in school and one learning in his own way. I quit the career that made me miserable. We stopped trying to keep up appearances and started asking what we actually needed.

I never liked change. But now I see it as our chance to design a life we love — no matter what curveballs come our way.

There have been plenty of challenges, not least the financial element, but we work through them together.

Self-Care

One of the biggest lessons I’ve learned is that making time for my own self-care is not a luxury. It’s taken me almost three years to really understand the importance of looking after myself. For so many parents, the notion of self-care can feel like a selfish act but it’s not just for us: my little trips, my daily walks and spending time with friends all help me to feel positive and alive and that means that I can be the best version of myself for my family.

Looking Forward

Autistic burnout has wreaked havoc but it’s also taught me a lot. I wouldn’t call it a gift - it’s been devastating, especially for my boy - but it also gave us permission to live otherwise.

In these last few years, alongside supporting my son, I’ve learned what truly matters. Not money. Not respectability. Not exam results. Not pleasing others. What matters is being true to ourselves. Living a life that works for us. Looking after myself so I can be the mum and wife, daughter my family needs and deserves.

We’re still figuring it out, one day at a time. I’ve gone from being the girl with the Five Year Plan to being someone who is learning to be excited by this new uncertainty. And for the first time, it feels like we’re living our life. 

I couldn’t be more proud of my amazing boy! Of course I’m biased but he’s the sort of person we need more of in the world and I’m excited to see what he goes on to do. I’ll be there to support him every step of the way.

My hope in sharing our experience is that it will give other families hope as they navigate a similar journey and that it will serve as a reminder of the importance of making time for your own self-care and of doing all you can to live a life you love.

-Kate