Autistic Burnout Recovery: Our Journey So Far

It’s now two and a half years since our boy began his descent into autistic burnout. We were in it before we knew it - before we even knew such a condition existed let alone how to deal with it. The burnout that upended our family’s life became a catalyst for significant changes in how we live.

So now, as we work our way through it, we’re designing a life which will hopefully offer protection from further burnout. I’m determined now to use all that I’ve learned to get it right for my son. Two years ago the only way we could think of to describe our situation was that our wonderful boy was broken. Now, as I continue to learn about autistic burnout, one of the biggest lessons I've learned is that recovery is an extremely gradual process.

Having been contacted by other parents whose children were also suffering autistic burnout and who had been caught out just like we had, I want to share a cautionary update on where we are on our journey and the steps we have taken to support ongoing recovery. It’s a positive, hopeful update though I offer some caution—it’s easy to get carried away with every positive step. We’ve found that it’s not a linear process, often a case of “one step forwards, two steps back”. But when I think back to where we were, how our lives were two years ago, it’s difficult to overstate how grateful I am to have recaptured some elements of our “old life”. Though the path has been difficult, and may be for some time, moments of progress remind us of how far we’ve come.

We’ve just had a weekend away with extended family. This is not a regular occurrence for us. This event has been in the planning for over a year and at various stages we’ve not been sure whether we would all manage to attend the celebration. Our determined boy did us -  and himself -  proud. We had a very special and memorable weekend. It did, however, serve as a reminder not only of how far we’ve come but of the significant challenges and limitations we still have to contend with. We may be coming through burnout but life is never going to be the same as it used to be. 

I’m writing this for two groups of people; for those of you who know Jamie or his family -  I hope this will help you to understand where we’re at in life.

For other families facing similar challenges, your journey won’t be exactly the same as ours, but I hope our shared experiences offer some guidance.

The Comfort Zone is still Crucial

Throughout burnout, home has been Jamie’s safe place and it’s still vital that he is able to spend the majority of time in his own house doing things that help him to feel calm and relaxed.

We’re very slowly expanding the comfort zone. Over the past year we have worked on increasing the list of other places where Jamie feels safe. He now quite enjoys a chat with his hairdresser who makes appointments for him at a time when the salon is quiet. We also have a small selection of favourite shops which we visit every week. And like lots of kids, he loves being in his granny’s house - being spoiled! 

Can’t Have it All 

I can’t stress this enough - recovery, expanding the comfort zone, trying new things all take a toll. We've learned that we can’t have everything; instead, we need to prioritise what matters most at any given moment. If this means other areas have to be shelved for a bit, so be it. For example, those visits to the now familiar hairdresser who chats with Jamie about his movies and TV shows are still a big deal. So if it’s a haircut day, we wouldn’t ask Jamie to also contend with school. We know that having been for his haircut, the rest of the day has to be downtime to allow stress levels to reduce.

We’re fortunate that school staff understand the importance of expanding Jamie’s world and improving his quality of life. They fully support us in balancing school attendance with allowing Jamie to rediscover other areas of life. 

I’m not the Driver

Only Jamie can really feel when he’s ready or not ready for something so we have to let him be the driver on this journey. I’ve got to admit I find this hard sometimes. I spend so much time reading and listening to other parents or professionals, picking up what I think are helpful ideas and in my desperation to help him to live (what I consider to be) a rich and full life, I often need to remind myself to step back and let Jamie take the wheel, guiding us on this journey at his own pace

Planning Planning Planning

I’ve always been a planner but I’m at a whole new level of planning now! Helping Jamie expand his comfort zone and re-engage with the world, while minimising stress, requires meticulous planning and preparation. While it’s not out of the ordinary to have to spend some time planning long journeys, such as our holiday to Sweden, our trip to East Lothian, a place we used to frequent, actually required almost the same level of planning. Car journeys are still a major source of anxiety for Jamie so he needed to be clear on where all our stopping opportunities would be and the distance between each stop.

Careful Scheduling

Part of the planning includes determining when would be the best times for Jamie to do things. Anything which is going to place additional stress on him needs to be cushioned with plenty of time (as in days) either side of the event. A recent trip to Comic Con to meet some favourite actors was an exciting but nerve wracking experience, stressful experience. The few hours spent there is the end product of months of anticipation, excitement and nerves. We would have to be mad to plan anything for Jamie in the following days. His calendar for this week, following our family event, is empty other than a movie day with granny. On returning home from our weekend away Jamie went straight to bed and was sound asleep within minutes, showing just how exhausting the weekend had been for him. This is something we’ve become used to. With nighttime sleep being very disrupted, we now know to allow time for naps after any stressful events. Sometimes this means a sleep after his hour in school or after a trip into town.

The Same but Different

I know life will never be the same as it was. Much to my surprise - and relief - we are now at the stage where we have begun to attempt some of the things we used to do. Sometimes they go well, sometimes they don’t. Only a couple of months ago I wrote a blog about our holiday to Sweden, something we had given up on being able to do again. This was amazing progress and we all came back with happy memories. However, as a mum, it was a different experience to our previous holidays. Every part of every day had to be carefully planned and managed to minimise stress and anxiety and there were things we would have previously enjoyed as a family but knew would be too much for Jamie to cope with now.

Eating out can happen occasionally but only in familiar restaurants. Even then, there is always anxiety around the event and it’s often touch and go as to whether we will be able to go. Of course, we’re grateful to be able to have treats like this but it's a fairly stressful experience for us as parents, trying to appear light hearted and happy but all the while watching Jamie to assess how he is coping and being alert for any possible stress triggers.

Be Prepared for Setbacks

Try not to be too disappointed by setbacks. I think they’re inevitable so be prepared! After managing a holiday to Sweden involving airports and flights, you can probably understand me being a bit taken aback at how much more difficult Jamie found it to attend our most recent trip. No airports or flights, just an hour or so in our own car to stay in the same room in the same house he had stayed in before. Almost all of the other people who would be there were the people he had enjoyed spending time with in Sweden in the summer. But, although we had some lovely moments, much of the weekend proved stressful.

And Surprises!

Imagine my complete and utter shock at walking back into the party room to be met with the sight of my boy laughing and dancing! Dancing!! He had been invited to help some of the younger kids with the ceilidh dancing and my heart was bursting with joy and pride at seeing him joining in and looking so happy. Treasure these happy surprises and hold them in your memory for the tougher days.

Reasonable adjustments

Anyone who has had to do battle with schools will be familiar with the requesting “reasonable adjustments”. It applies outside school too. We’ve learned what is reasonable to ask of Jamie and it’s often not the same as for our daughter or for other children his age. I wish for anyone trying to support their autistic child an extended family as supportive and respectful as ours. Asking Jamie to sit at a crowded table would feel like torture, so no one minds when he eats by himself or chooses a bowl of cereal instead of the shared meal. At the ceremony we attended this weekend, Jamie felt most comfortable standing at the back of the room while everyone else was seated. Our supportive family had no problem accommodating this.

Looking to the Future

As I’ve already said, prepare for surprises. Jamie recently announced that he wanted to go to London!  One of the places he was never going to go back to. Our boy is motivated by the things which interest him and he discovered that the stage version of one of his favourite films is going to be on in London. I was in two minds about whether he would cope but there’s only one way to find out, I feel we’ve got to let him try. I am, however, going with the knowledge that this will not be one of my usual trips to London. This is Jamie’s trip and if that means spending much of the time in our hotel room, that’s ok. I’m learning that managing my expectations is almost as important as maintaining hope. We might have an amazing trip, or it could be an ordeal. There is no way of knowing so I have to prepare for each eventuality.

Jamie’s desire to get out there again and to try going places gives me so much hope for the future. The last year has taught me that some holidays or days out will be more successful than others but allowing Jamie to guide us on what is manageable will, I hope, help to allow more good times than tough times.

Having been on the turbulent journey of recovery for as long as we have, I’ve learned that it’s best not to look too far into the future. On the good days I can imagine Jamie managing to do the things he wants to do with his life. But on the not so good days when I see him struggling to cope, I’m reminded that we’re walking a tightrope and will have to tread very carefully for some time to come. I don’t know exactly what the future holds, but I’m hopeful that by allowing Jamie to dictate the pace, more good days lie ahead.

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