Those of you who have experienced autistic burnout with your child won’t need me to describe all that this can entail. If you haven’t had this experience, I don’t pretend to be an expert on the matter but I have seen how it can sneak up and take away someone's ability to do so many of the things they've previously been able to do. Autistic burnout can be brought on by stressful life events as well as by the ongoing pressure of trying to live in a society which does not always meet the needs of an autistic person. It will of course vary from person to person but can include physical and mental exhaustion, anxiety, increased sensory sensitivity, difficulty sleeping, increased need for comfort and routines. Favourite places can become no-go areas and it can become very difficult to maintain relationships. Burnout can last weeks, months or even years as has been the case for our son.
There are experts out there who I have learned a phenomenal amount from and I’m immensely grateful to them. I have added links to these people at the end of this article and would highly recommend turning to them if you want to understand more about autistic burnout.
My intention for this post is to share how my child’s autistic burnout affected me and how I dealt with it. I am not the one who has lived through autistic burnout so how can I write about how it feels? Only Jamie can accurately talk about that and, as I would imagine is the case for most 13 year old boys, he’s not interested in doing that just now. I think it’s enough for him to just get through it! A large part of my motivation to start this blog was to hopefully help a few others to feel less alone in life. In terms of burnout, I think it's important to acknowledge how life changing it can be for a parent as well as the child at the centre of it. So here you can read not about Jamie’s experience in detail but about how his burnout changed my life - for the better.
I realise it must sound strange, maybe even terrible, to say that something so awful happening to my child brought about positive changes for me. For a long time it certainly didn’t feel that was the case. I felt like I had lost so much of what I loved in life.
I have always tried to conform and do what is expected of me. I suppose that’s what I’ve encouraged my children to do as well. I’ve always been quite scared of getting into trouble or people disapproving. Not anymore! In sculpting a rich life for me and my family I’ve come to realise that a lot of what’s considered “normal” in our society isn’t only not right for us - it can actually be damaging.
We used to follow a fairly typical family day to day life. James and I both worked, I was part time. Both of our children attended school full time although Jamie was never a fan. There was more to life than work and school though. We enjoyed frequent days out all over Scotland, some amazing holidays in Europe and the US and minibreaks around the UK to explore and visit extended family.
To have led such a “normal” family life and then find it unravelling was pretty scary. However, I can see now that the life we were living (full time school in particular) was completely wrong for my boy. So as we piece our lives back together, we’re doing it differently. Seeing our previously happy boy in burnout has been heartbreaking and I'll do everything I can to help him avoid further unnecessary distress.
Can you imagine years and years of masking, coping with environments that are wrong for you, trying to fit in with societal norms and expectations? Our son did that for 11 years until he just couldn’t anymore. He had hit burnout. And when that happened everything broke down. His life, and ours, changed completely.
Something that I found difficult to understand at first was why Jamie was no longer able to cope with things he had seemingly coped with all his life. Then I learned about Autistic Burnout. During my teaching career, I had undertaken some training on Autism but it was focussed more on younger children and I don’t think Autistic Burnout was mentioned. Even after Jamie’s diagnosis, the Parenting Autism course provided didn’t mention burnout. Unfortunately it’s not something I knew much about until we were in the midst of it.
Once we knew more about burnout it all made much more sense. The onset of Jamie’s difficulty in coping with life was not because he had received a diagnosis. It was because he was in burnout. I’ve since learned that primary to high school transition is a common time for burnout to hit. And it hit hard.
There was a period of grieving the life we had had and the future we had envisioned. It was hard to feel any hope that the things I loved - travel, days out, socialising, sleep even! - would ever return. I felt trapped and excluded from all the happy times it seemed other families were enjoying. I remember being out walking one day and on seeing a plane fly overhead, I burst into tears. To add insult to injury, the shuffle function on my phone chose that moment to play Cliff Richard’s “Summer Holiday”! At that time, it seemed that holidays for our family were a thing of the past. Little did I know that two years on, we’d be preparing to fly to Sweden as a family of four once again.
Learning that our situation was not unique gave some comfort. You don't need to spend very long researching support groups or facebook forums to realise that across the UK there are thousands upon thousands of families feeling desperate, feeling that they are failing at parenting because the way their family needs to live differs from what society has led us to believe it should be. Sadly, so many of us don’t consider trying an alternative way until we have already suffered through years of trying to fit in with societal norms.
Discovering Dr. Naomi Fisher was a turning point. Her work revealed that we weren't alone in our struggles; in fact, our journey aligned with common stages experienced by many families. This realisation, while sobering, offered hope and a sense of belonging. Learning through her courses empowered me to feel confident in supporting Jamie.
Of course we understand now that Jamie’s burnout was the catalyst for us redesigning our lives and I’m so glad that we did and so grateful that we were able to. Our daily routine underwent a significant transformation. I had already been signed off and we made the decision that I would not return to work. We removed any pressure on Jamie to attend school for any longer than he felt able to manage. Working closely with supportive school staff, we have built up to spending just a few hours per week in school. This change has brought immense relief and a sense of freedom. We’ll continue to work with the school who are amazingly supportive so that when Jamie feels able, he can return to learning. Not having the structure of work and school is a completely new way of living for me. And I think it’s exactly what Jamie and I both needed. It's taken me a while to genuinely stop caring about other people's views on school attendance. Having total confidence that we are doing the right thing for our son gives me a type of confidence I didn't think I would ever have.
Once I had come to terms with the fact that our life had changed significantly, it was easier
to move forward and get on with our new way of living. I hate the feeling of having so little control over the kind of life I lived and it’s hard to feel any sort of control without first accepting a situation. Mo Gawdat who I like to consider my very own "happiness guru", once spoke about how if you can’t do the thing that would make you happy, you should aim do something that will make you happier that you currently are. This was a lightbulb moment for me! If there was something I longed to do, instead of being defeated by our circumstances, I began to ask myself, “If I can’t do the thing that would make me really happy, what would help me feel a bit happier?” While a fortnight’s holiday with my family would have made me happy, that wasn’t possible. However, a mini break with my daughter or a friend would certainly make me happier. So there have been a few of those!
Two years on there is light at the end of the tunnel and it’s getting brighter every day. I do actually think of our time in autistic burnout as being similar to being in a tunnel, it’s felt long and very dark at times. But our job is to support Jamie to keep travelling through the tunnel. Some days, or months, he had to stay put in the depths of that dark tunnel but as time passed I began to feel some hope that we would keep moving through.The important thing was that we allowed Jamie to dictate the pace. It's a bold thing to say and I may be proven wrong but, after two years, I'm very hopeful that we're approaching the end of this particular tunnel. There may well be more tunnels to navigate in the future but for now I'm focussed on getting out of the one we're in.
While focussing on supporting Jamie, I was also aware that the rest of the family were not in burnout. It was important that some kind life, even if altered, carried on for the rest of us. This meant sometimes taking turns to step outside the tunnel and make the most of this new-look life. In From Italy to Holland I wrote about the challenges of having to meet the needs of both our children. It has been very much a turn-taking situation which has meant not much time with my husband and that’s hard. But I keep telling myself it’s not forever.
My tips for coping during your child’s Autistic Burnout
Connect with others who have been or are going through the same thing. Whether that’s friends you already have, online support groups or in person groups, find your tribe! These will be the people who truly understand what you’re experiencing because they too are witnessing their child in distress and wondering what has become of their life. I consider myself very fortunate to have a couple of friends who have also lived through burnout with their children. (If you don’t have someone in your life to support you through this, just drop me an email at otherwisekate@hotmail.com.)
Learn as much as you possibly can. Knowledge is power and you’re probably going to need that to advocate for your child. Unfortunately, you’re likely to come across people who lack understanding of how debilitating it can be and your child is going to need you to be the one who helps others to understand. I've read books, listened to podcasts, watched documentaries, joined various Facebook groups and trawled the internet. Each time I learned something which applied to our situation, I felt that little bit more empowered.
Be grateful for the small wins. The average 43 year old woman may not consider weekly visits to HMV the stuff of dreams. But that changes when your child has gone through months of barely being able to leave the house and now wants to go to a couple of favourite shops every Tuesday. As I look through DVDs and books with my boy, I am so grateful that we are able to do this together.
Self care is so important. So important! Despite knowing this, I’ve always been rubbish at making time for it, always too busy to relax or take time for myself. I also need to acknowledge that during the toughest months of Jamie’s burnout my own mental health was far from optimum but all I could focus on was trying to help my boy. However, I can now vouch for that saying, “You can’t pour from an empty cup” so I have learned to sometimes prioritise my own needs so that I can be at my best for my family.
Self care will mean different things to each of us but my self care looks like:
Mini breaks
Two years ago I would have been horrified at the suggestion that I could leave the country without my family. But I’ve started having little trips with friends, with my daughter and sometimes all by myself and, oh my goodness, I love them! London is one of my happy places so I try to make sure I spend time there few times per year. I miss my family and always feel guilty about going away but I come home feeling recharged and knowing that despite some tough times, I’m still able to embrace new experiences.
Walks
I need my daily walks with my Toby dug and a good podcast in my ear. They allow me to switch off for an hour or so in the fresh air and get some of those good endorphins flowing. It’s hard not to smile at Toby ambling along and being a bit daft. Simple pleasures.
Date Days
With two children at school all day, me working part time and James working shifts we were previously quite spoiled in terms of time together. But those days are gone. So I’m immensely grateful to my lovely mum who has helped in so many ways. One of the things I appreciate the most is the monthly Date Day she enables me and James to have. Whether that’s spent hiking up a hill, pub lunching or pretending we’re cultured and going to an art gallery, those days are so precious to me and I look forward to them every month. We get to just be us, out of the house together, do what we feel like and enjoy uninterrupted conversations.
Time with friends
Try to maintain friendships, even though there will probably be days where you feel too tired or sad to want to speak to people. There were times when I really had to force myself to socialise but I always felt better for it. I'm so thankful for my friends who are always there for a walk, a pamper session, a hot chocolate or a dinner date but who also understand when I just need to be at home with my boy.
Autistic burnout is a challenging experience for both the child and the parent. By sharing my story, I hope to offer support and encouragement to other families navigating this journey.
While the path to recovery may be arduous, it's important to remember that hope and resilience are essential. By prioritising self-care, seeking support, and listening carefully to your child, families can find strength in overcoming challenges and creating a fulfilling life for themselves and their children.
Remember, you are not alone. There are resources and communities available to provide guidance and companionship throughout this process. See below to check out the resources that are helping me to keep building a life I love despite autistic burnout.
Neurodivergent Lou (Instagram)
Not Fine in School (website and private Facebook group)
Thank you for sharing this - I found it so helpful both personally and professionally.
This is so helpful, Katie.
Another excellent read. Throughout my career I’ve undertaken many courses on autism but have never heard of autistic burnout. Really informative, Katie. Xx
As ever Katie so well written and inspiring in a sad yet happy way