Please never forget how brave it is to continue to show up in a story that looks so different than what you thought it would be.’ Liz Newman
Our son was excited about starting school, but with hindsight, maybe we showed up in the wrong story, the wrong setting. We certainly showed up for too long.
In Year 2 he cried tears of joy and thanked us whole-heartedly when we told him he no longer had to attend school. But nothing could prepare us for what came next.
We made the decision to deregister our child to embark on what we felt was more like ‘Non-Elective’ Home Education. We had not just shown up in our school story, but we had given it absolutely everything to the detriment of our mental health – all of us, as a family, but mostly our son.
As we prepared for the next chapter, our son gradually disappeared into severe autistic burnout. It was devastating and totally life-changing.
Shut down, withdrawn, unable to face the outside world, unable to face anything – life inside the house, life inside his body…Feelings of safety were scarce, day and night for days, weeks, even months.
Recovery was long and messy, but just like we had supported him with a passion in school, we supported him with a passion in burnout. ‘Non-Elective Home Education’ became ‘severe burnout recovery.’
We learned about the nervous system, trauma and healing. Step by tiny step, we built our road map out of burnout and into recovery, where we will remain for the foreseeable future.
So what happened?
Our story echoes that of many up and down the country, and in fact across the globe, and I’m sure many of you will relate reading this today.
A story of not being ‘fine in school’.
While it was apparent at times that he was not ‘fine in school’, I don’t think anyone quite appreciated the extent of his distress, for he is a child who is academically able; a child who internalises; a child who is keen to please; a child who wanted to learn.
Having worked in hundreds of primary schools (I was a Primary PE Consultant and a teacher for over 20 years), I could never imagine how he was coping in school. Seeing him out and about and experiencing his levels of distress, it just didn’t add up. We were doing everything to support him at home, and I had done every available webinar, joined every available support group, I listened to podcasts, read books…this was also shaping the work that I was clinging onto as a PE Consultant.
Turns out he wasn’t coping at all. He was slowly slipping into severe autistic burnout, complete withdrawal and total and utter collapse.
Schools are forced to take notice of those who fight or take flight. But, as we know, those that follow a different pathway can be thought of as model pupils, maybe emotionally sensitive, sometimes showing difficulties with interpersonal skills but generally, ‘fine in school’, until the mask drops off, or fades away, because we know that masking is exhausting and unsustainable.
It would seem some children carry on in this way, turmoil on the inside, but just kind of hanging on in there, their families too, up and down all over the place. The tiny things tipping them over the edge. Distressed behaviours before, after and in between the school days. We’d been there for a good couple of years, but then the extent of continuing to show up in the wrong story was starting to show itself in other ways.
His physical distress turned more into mania and then hopelessness, withdrawal and shut down. It looked a lot like depression. His physical health deteriorated, and we went back and forth to the GP. Sleep moved from disturbed to extremely disturbed and sensory sensitivities were unbearable. It was becoming clear we could not go on for much longer.
In the absence of an EHCP (I had of course tried), to get to the point of Local Authority support and onto the EBSNA pathway, a child’s needs have most likely become complex, and it is, in my opinion, rather too late. Our system is reactive, and what I had been fighting for was proactive, preventative, and what seemed to me like common sense and glaringly obvious. But then I am a SEND parent. I have lived experience. I had been trying to address the roots, when all school were able to do was prune the branches and, in some ways, prolong the suffering. We were pruning at home, doing our best to recover from each day before the next onslaught of overwhelm, stress and anxiety.
Local Authority advice is just that. It is advisory. Schools do not have to act on it. I am not saying that they do not care about their pupils, but they are not blessed with endless resources, adequate funding or training. And so, they must cherry-pick from a long list of advice, continuing to prune the branches. The roots are inaccessible. In many ways, the Government has sole access to the roots, although I know there are some schools who have started to dig a little deeper.
So, while school was busy trying to accommodate our son in the classroom, I was left advocating to get him out of there. I was desperately trying to find every available opportunity away from school, that would get him his mark on the register! School was toxic. In his words, it was ‘too busy, too noisy and too chaotic’.
As the situation deteriorated, several things happened that added to our trauma. In the end our son made the decision for us. He gradually became unable to attend the pre-arranged 45 minutes a day, with a TA outside of the classroom. He had nothing left to give; we were starting to enter the territory of fines, which created added stress to an already hopeless situation. We no longer recognised our child, and his innate love of learning was becoming inaccessible.
Having a child unable to attend school had a huge impact on all our lives. The distressed behaviours impacted every area of life. Our life experiences had shrunk until really the only thing left was school and screens. Despite our best efforts, we had become isolated. Even contact with family was heavily impacted. Grandparents visited, but our son couldn’t engage with them. Cousins were too much. He had developed many fears, one of which was a fear of children.
And so, the letter was sent. We deregistered. It was a huge relief, but also incredibly anxiety-inducing as we were heading into the unknown. All myself and my husband had experienced was ‘the system’.
There were some positives!
- Toucan Education. I found out about Toucan through a workshop, and after a hugely stressful start to Year 1, we got our son a place one day a week. He absolutely loved his day at Toucan and there were no distressed behaviours on his Toucan day. It also meant that when I was losing the ability to advocate, I had someone else to step in for me. This support was so valuable, and Toucan’s OT also shared several concerning observations. In the term prior to deregistering, our son was also showing distressed behaviours at Toucan. I finally had back-up.
- Although I had failed to get the LA to assess for an EHCP, it did lead to a referral to the Communication and Interaction Team. We were allocated a fantastic specialist teacher who worked periodically with us as a family, advocating for our son in school. I really benefitted from having my voice heard and he had a great relationship with our son.
- We worked with the same specialist teacher to develop a plan to address Emotionally Based School Non-Attendance (EBSNA). I’m not entirely sure what it was meant to achieve, other than the obvious. It was a big report full of fantastic advice, to be fair school did try to put things in place but it all came too late.
- We had collected a significant number of reports along our way, which was enough to try again for an EHCP and this time we were successful. Clearly, we had to fail in school before being considered. While it was a dreadful process, we do now have an EHCP.
- I made some good friends through school and while we slipped away quietly, I am eternally grateful to those who noticed, to those who kept in touch, to those who visited us with gifts and acts of kindness, to those who brought their children to see us despite our son being unable to engage in play and conversation. It meant so much.
So, as we set out in our new story, we managed to keep going with a few things like Toucan and one or two therapies, but everything became too much. Any attempt to continue with things that had previously brought joy and hope became inaccessible.
According to Viv Dawes, ‘For some people, especially those who are AuDHD (autistic and ADHD) and also autistic people with a PDA profile, their experiences of burnout can be very extreme and may mean the individual’s life spins significantly out of control’.
We were in crisis, and that realisation that no-one was coming to help was so incredibly hard and heart-breaking. I don’t know how we got through it, but we did, we emerged stronger, and we will never let it happen again. We had to prepare ourselves for a long period of convalescence, longer than we could ever imagine. We were prepared for at least a year!
We hadn’t heard of autistic burnout, but I think we had been in and out of it for some time. According to the Royal College of Psychiatrists, ‘burnout can be short-lived state at the end of a day but longer and more severe stress can produce a more sustained state due to an innate change.’ You have to wait for its ‘natural remission’.
But thanks to our love of learning as a family, we’re 18 months into our new story and my goodness it’s epic. I once had my mental health questioned based on carrying out so much research into neurodivergence, but it’s thanks to that research, and the research that continued through burnout, that got us to where we are now. It’s not where we imagined we might be, but it’s made us aware of how toxic the school environment was for our son.
We still have triggers to work through – anything that feels like school. The body keeps the score. Unprocessed memories that show up unexpectedly. We still hear stories of distress from those school days, but we can process them now. We still have a child who can take flight, fawn, freeze and flop but we know how to support him, and he has learned so much about supporting and advocating for himself. He is growing with self-awareness and greater compassion. His innate love of learning has returned, and his interests are growing by the day. We leave the house, often daily, he is enjoying socialising, which is something he always wanted, but never had the capacity to do, we spend time in nature, and we take time to notice, everything!
And we are back at Toucan! It took a year to test the water and build to just two half days, but those two half days mean so much to all of us. I cannot thank the staff at Toucan enough for their kindness, understanding and compassion in helping to reintegrate our son back into education.
Lessons learnt:
- You know your child best. Trust your instincts.
- Schools in their current state, are not for everyone.
- Sensory trauma is real and can lead to burnout.
- Autistic people can be traumatised by environments.
- Chronic trauma interferes with neurobiological development.
- Meltdowns are not just a part of being autistic.
- You cannot heal in the place that you were traumatised.
- School isn’t the only place to learn.
“Autistic burnout is a severely debilitating condition with onset preceded by fatigue from masking autistic traits, interpersonal interactions, an overload of cognitive input, a sensory environment unaccommodating to autistic sensitivities and/or other additional stressors or changes. Onset and episodes of autistic burnout may interact with co-occurring physical and or mental health conditions” (‘Investigating autistic burnout. Final report’, Dr S. Arnold, Julianne Higgins et al Feb 2022)
Guest blog post written by teacher, author and Toucan parent Gemma Chapple.
Find out more about Gemma and her story on Instagram here