This article aims to support other parents and carers with a young child in autistic burnout. It has been written by a mother with lived experienced wishing to share her family’s story to empower others through such challenging and distressing times.
When my then eight-year-old daughter started not being able to attend school nearly two years ago I had no idea how quickly our lives were going to desperately change. I was also clueless, up until that point, that schools had trained manual handlers to physically drag children across the threshold – our first shocking experience of what would be many more upsetting experiences to come. It’s why I shall always be so thankful to an incredible staff member who shared it was my choice to take up this offer to get my young child into the classroom. Things were already pretty traumatic just arrive at the school grounds. It soon became very clear my daughter was suffering from autistic burnout and her school experience to date had been a traumatic one.
I had never fully comprehended that my daughter was autistic; the ADHD and dyslexia were clearly obvious, but an autistic with Pathological Demand Avoidance (PDA) profile diagnosis was completely unexpected – it knocked me sideways. Knowing now what I do about autism in girls it was clear right from babyhood, we do indeed as a society need to grow our awareness of neurodivergence in girls.
The shock of learning so many new understandings about your child so quickly that explain everything but equally you know nothing about brought so many questions:
What is PDA, what is autistic burnout, how long does it last?
What is school trauma? Heavy masking – what is it? How as a mother didn’t I know?
I very quickly learnt that autistic burnout shows itself by a child presenting with increased sensory intolerance or heightened autistic traits, loss of basic skills and functioning, physical issues, sleep difficulties and most importantly, your child will present all the signs of chronic exhaustion/fatigue. For us, my daughter had spent many months with a blanket over her head only able to watch YouTube on an iPad, eating plain pasta every day. The little she communicates with me is done through shouts and screams, and sometimes lashing out and hurting those around her. As a parent I felt lost, and deeply worried about my connection to my child, which I have lovingly built and nurtured over many years.
“Once a child is in burnout, they are unwell and cannot function. They experience profound distress and suffering. Recovery can take years. There is an enormous impact on families with many parents having to give up work to support their child at home and a huge cost to local authorities in terms of education support approaches, many of which are not accessible to the child.”
Dr Siggers, 2024
Clincial Psychologist
Autistic burnout is not yet recognised as a medical condition and in our experience it is only just starting to be understood by educational and general healthcare professionals but in general society there is little knowledge and awareness at all, which sadly causes further stress through lack of understanding and support.
I found that society simply doesn’t not understand a child experiencing these difficulties and the impact on the family can be catastrophic. When a child can’t go to school, can’t manage play dates, days out, family occasions, holidays or sleep overs, it’s akin to lockdown but no one else in the world is with you.
It is extremely isolating, not just for the child but the whole family. I am a single parent and the affect this has had on my daughter’s younger brother was also devastating to witness; his early years were lonely and he often was expected and need to act older than his years, and though caring for his sister, he was not able to understand why her life is so different to their peers.
Alongside the isolation come the judgements- even closest friends and family can’t understand, and why would they? They haven’t sat doing the hours of research into the situation. It is also I feel one of those situations in life where you have no idea how it can feel unless you have experienced it. The basic lack of understanding is the hardest to bear. It makes you question every decision you make. It feels as if no one has your back. If she had an illness that people understood would there be more support?
Time goes slowly, there is no respite as she can’t and isn’t able to go stay with anyone else – the separation anxiety is real. I’m my daughter’s safe place and means of being able to navigate the world, and I know deep down that is what will pull her though. Speaking to autistic adults who didn’t have a safe place growing up and hearing the affects of that gives me strength in knowing I’m doing everything right. But for me, there has been no break from parenting. I’m her everything and I haven’t had a day off parenting her in months. Going to work feels like a holiday. I work one day a week and I am only able to do that thanks to a lovely Special Educational Needs (SEN) childminder, she is our guardian angel and we are extremely lucky to have found her.
With no school comes huge waves of the blame and shame. Our school has been understanding and supportive as much as they can be but learning how to deal with the local authority has been massively eye opening. Even our school hadn’t dealt with this situation before. I felt it was me, out of complete desperation, and not the local authority doing all the learning of what our rights were to make sure my daughter wasn’t left to fall down between the cracks forever. Late nights spent writing reports and many emails while crying at the state of our lives. Learning on Facebook groups how the SEND system is crumbling through need and lack of funding.
But nothing compares to how you feel supporting a child who is questioning whether she wants to unlive herself. I have worked with hard to reach children and young people who are vulnerable and on the fringes of society that are struggling with their mental health but even those experiences can’t prepare you for your own child’s struggles: the sleepless nights, questioning every decision you have ever made consciously and subconsciously for your child and how it’s come to this.
This desperate situation has changed my child forever and I simply don’t feel the same. I’m putting myself back together slowly but it’s going to take time, all the while trying to do the same for my child. Having a child in chronic burnout means your life suddenly changes. You become SEND Mama Bear, aka full-time administrator, coordinator and project manager. Mama Bear is fierce and finds energy and a fire in her belly she didn’t know was possible. Her days consist of but are not limited to: emails and phone calls to the local authority, the school SENCo, GP, CAMHS, educational psychologists, family support workers, early help workers, therapists, autism consultants – the list goes on. Not forgetting a daily email to your child’s school stating that they are too anxious to cross the threshold that day to ward off any potential fines, threats or prosecution. All this happening while you’re the full-time carer to a very unwell child, advocating for their needs, filling in DLA forms, learning as you go about SEND law and your rights as a parent, filling in tribunal paperwork, trying to keep earning a living (which can very quickly fall by the way side) which spirals into worrying about paying the bills and holding your family and sanity together whilst on benefits, seeing a 20 year career being pressed pause on. All you’re asking for is a little understanding from the world around you. Sadly, there is very little, and often when it does arrive it’s too late. The profound impact to your mental health is frightening. I have danced close to the edge of the cliff of stability and this in turn affects who you are as a parent, why would it not?
On top of this desperate situation comes the self-reflection; looking at your own childhood, which parenthood naturally pushes you to do anyway but with your child’s diagnosis often come wonderings about your own.
As a result of my daughter’s painful journey I now too have a diagnosis of autism, which has brought both comfort and new understanding but also the realisation that there is more of the same to come and in equal measure – will I have to dig even deeper to find the strength and energy to find my place in a kind and accepting society?
I have found that since my diagnosis of autism, more than anything, is that it brings you closer to your child and helps you untangle and comprehend why during your own childhood you were misunderstood; it help heal parts of you didn’t know needed healing.
Miraculously we have some how survived, which at points I have questioned, my child now has an EOTAS (Education Other Than in School) package which includes home tutors and a therapist. It has taken nearly two years but she finally has an education that meets her needs. She is getting better/coming out the other side of the burnout, slowly but surely. It isn’t without a massive impact on us as a family emotionally, physically and financially. The fight for my daughter to have the best start in life just doesn’t feel like it’s been a fair one.
Despite all that we faced and experienced I still count us as one of the lucky families, and for that I am thankful.
Advice I wish to offer others heading into the eye of the storm:
• Find a tribe online and in person and if you can’t find one make one. There are many social media pages of parents facing the same challenges – connect with them.
• Hold on tight. And then even tighter. Even on the hard days I needed to be clear with myself that I was doing the right thing and did still trust myself.
• Try your very best to brush off others judgments, even people closest to you. Easier said than done but you have to. This is one of the hardest parts I feel.
• Go to counselling. Even if it’s online as you can’t leave the house and be away from your child. Just do it.
• You will find out who your true friends are. You will find out that some may not be as empathetic as you think they are. And for many you are ‘out of sight, out of mind’. The friends that do shine make sure you hold them tight. But don’t offload too much -I learnt that the hard way.
**** I have kept my child’s and I identity hidden from this piece for anonymity and to safeguard that she continues to receive the care we have so desperately needed for her for so long.
Useful links:
Naomi Fisher
Missing the Mark
Autistic Girls Network
Not fine in School
Burnout Mama 