Autistic burnout 12 months after diagnosis

This blog post is the final in a series of stories I’ve written to coincide with the first-year anniversary of my Autism diagnosis, so it seemed fitting to end where it all began – with Autistic burnout.

As I wrote in a story for Reframing Autism in May, the first signs that something bigger than exhaustion was happening with me came in the form of a preoccupation with time, and how there didn’t seem to be any of it left for me.

Simple tasks, like having to remember to put the bins outside for bin day, became grand events that induced a panic-like state in me, so I took onboard my wife’s sage advice and looked into it.

Without the crushing, all-pervasive burnout, I would never have discovered that I’m Autistic, I’m convinced of that. But if I wasn’t Autistic, I wouldn’t have ended up in the state of extreme burnout I found myself in.

This wasn’t the first time I’d felt this whole of mind/body exhaustion in my life – it had flared and dissipated, always simmering though, from as early as childhood. But this time I had the unnerving sensation it was here for good.

The secret to any sort of recovery from that level of burnout lies, quite clearly, in the knowing. For knowing allows you to make changes (if you’re willing and able to), and without it you’re doomed to carry on living as everyone tells you “You can”, rather than as you should.

Life in the here and now

So, 12 months ago I could barely get the bins from behind the fence to the curb without having a meltdown. But what does life look like now – with the knowledge I am Autistic and the changes that I have been able to make throughout 2023.

Well, I’m living life more slowly, that’s for sure. It isn’t easy though. It isn’t naturally the way that I’m wired – I like to be doing things, getting things done, moving forward. And the world wants us all living our lives that way, too. It pushes us to.

But realising that living life like “most people” isn’t good for me, like cocaine isn’t good for me (I’ve never tried cocaine, by the way, just making a point), and changing it, has perhaps been the single best thing that I’ve done.

The calendar looks different now, there’s a lot more ‘white space’, because there has to be, and I’m vigilant in making sure that there is as well.

I carefully orchestrate it so that I don’t go out too much in a single week. I limit emails and phone calls. I’ve even cut back on the jobs that I do around the house.

Space is my friend; I take it and I guard it carefully. And I’m getting better at knowing whether I’m full or not, or whether I still have some capacity to give.

Importantly, I say no – to others, but importantly, I say no all the time to myself.

This is the concrete-like base from which I now live. It feels safe, it fits me better than anything anyone else could present me with.

It does mean battling guilt on a fairly regular basis. Guilt that I’m letting people down, or that I’m not contributing in the way that I’m “supposed to”.

I quit my job at the beginning of 2023, you see, out of necessity, as a means of being able to carry on with living at all. 

Autistic burnout doesn’t just up and leave you one day, because you change your lifestyle or because you ask it politely to buggar off and to never return. It comes with the Autism, they’re inextricable linked, like a twin set.

It’s living life like you’re not Autistic that makes it worse, I realise now – fans the flames on a spark that’s always flickering, turns it into a blazing bush fire someone (most likely yourself) keeps adding ample doses of petrol to.

Professional intervention

I’ve said it before and I’ll say it again: For all of its problems, in Australia we are so lucky to be able to access funding via the NDIS as Autistic people. If we couldn’t, I really don’t know what I would do or what life would look like right now.

If you are in Australia, and you or your child are Autistic, and you haven’t applied for funding, then do it today, before the Government implements possible changes.

You do need to have a formal diagnosis. If you have one, clicking this link will take you to my article where I make some suggestions to help you make what will hopefully turn out to be a successful application. It is an arduous process – but it’s worth it.

And if you’re not in Australia, I sincerely hope you have access to something similar. And if you do, apply now! You deserve it, you’re entitled to, and most importantly: you need it – even if you don’t realise yet that you do.

NDIS funding has enabled me to see an occupational therapist, and a clinical psychologist, and again, I can’t express in mere words the positive difference being able to have regular sessions with them has made to my life.

NDIS funding has also allowed me to buy sensory support tools like noise-cancelling headphones and therapy putty, as well as fidget tools, sensory blankets, books about Autism, and more.

Without these tools to help me, I know that I wouldn’t be able to regulate my emotions anywhere near as often and as readily as I’ve learnt to (although I do still have some way to go!).

If you’re Autistic, then at some point in your life (for many their entire lives) you will need support. If not today, then tomorrow, or the day after that, or perhaps like me, 52 years down the road.

Grinning and bearing it is one of the worst things you can do for yourself. Seek help, as often as you need to. And make use of whatever other types of support are available to you.

Learning to let go of the shame

This is the none-too-subtle elephant in the room, isn’t it? Something most neurodivergent people know far too much about but get really good at turning a blind eye to until it rears up and bites you in half.

Shame is guilt’s ugly cousin (apologies to all the cousins out there), sneering at you any time you even think of doing something differently than the way you know you’re “supposed” to.

As with guilt, I’m still working on this one. I perform ableism on myself with the best of them. I tell myself I “should” be able to do this or that, that it shouldn’t be such a big deal, that I should (I can’t stand this phrase but I’m going to use it) “man up”.

That’s what the psychologist is for. And, more importantly, the people that love and care about you, and accept you for who you really are.

Here’s a puzzler: How do you know if someone’s your friend? Tell them you’re Autistic, then be yourself, truly the way that your Autistic self is, and see how long they stick around for.

I’ve been surprised by some of the people who have stuck around. And I’ve been equally surprised (i.e., devastated in some cases) by those who have either disappeared, or not even commented on my learning that I’m Autistic, even though I know that they know, and they’ve had ample opportunity to broach the subject with me.

But that too is good. It’s like unmasking – once you get everything out in the open you at least know where you truly stand.

Much of my shame (and guilt) revolves around the sorts of topics I’ve written about above. I’m taking money from the NDIS that would be better spent on ‘real’ disabled people. I used to be able to work 40 plus hours a week, so I should be doing more now. Did I really put a donation button on my website and ask complete strangers to help me out?

I have always struggled with my emotions, battled my negative, intrusive thoughts. What I perceive to be real and reality itself don’t always align as readily as I’d like them to. So I’m working on letting go of the shame and trying to replace it with self-compassion, and a healthy dose of self-care, too.

But it isn’t easy when, as an undiagnosed Autistic person, you’ve spent so long putting a brave face on almost every interaction you’ve ever experienced.

So, what does burnout truly look like 12 months after learning you’re Autistic?

For me, if nothing else, life does now feel somewhat lighter. For most Autistic people, limiting the number of times during the week you have to engage with others will do that.

But I’m sleeping better than I have in a long time (not perfectly, but better than I was when I wrote this). I’m living more authentically. I’m even gradually getting to heart of who I really am.

As I say, there are struggles – many struggles. I will always have my meltdowns about things most people wouldn’t give a second thought to. I will always battle those parts of life that are non-Autistic in their form and structure (i.e. almost every part of life). I will, it seems, forever repeat myself (sorry, my love 😕).

But I feel more hopeful now about the future than I have for a long time – because I’ve made so many changes, because I’ve slowed down, and because that in turn means that I’m closer now than I’ve ever been to living life as the Autistic person I truly am.

I know that there’s still a long road ahead of me; it’s impossible to unpack five decades’ worth of life in a single year. But I’ve started now and they (not sure who they even are!) say that beginnings can often be the hardest part.

And as for time – that pesky unit of measurement that triggered all this and which has at times driven me to despair?

Well, there will still never be enough of it as far as I’m concerned, 2023 being the fastest, blurriest year yet. But at least it isn’t the malevolent spectre it was this time last year. On that fact alone I’ll hang my metaphorical hat.

This story forms part of a series of blog posts written to coincide with the first year anniversary of my Autism diagnosis, each highlighting a key ‘takeaway’ from that first 12 months. I hope you enjoy reading them.

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