Life and the great Autism trade off

A few weeks ago, the occupational therapist I’ve been working with asked me if I wanted to talk about accommodations for when I return to work. That I experienced a sudden rise in temperature and felt the bottom drop out of my stomach said much about my state of mind on the subject.

While she continued to speak, I added up in my head the months since I’d first gone on sick leave: Nine. Six since I’d quit my job completely.

For much of that time, I’ve done very little: watching TV, going for walks, playing a game called Football Manager that I (may) have become obsessed with.

For the rest, I’ve worked on this blog, and in my yard, and on myself; with the aforementioned occupational therapist, and with my psychologist, as well as taking some short courses and one-off sessions about Autism and everything that it entails.

If I do one thing, anything of substance, that requires the expenditure of some modicum of energy, like writing this piece that you’re reading, I’m done – for the rest of the day, for the next few days, either way I need a lot of time to “relax”.

Autistic burnout, I realise now, takes no prisoners – if you’re in it, you’re in it for the duration. It’s a permanent state that ebbs and flows depending on how much you’re able to take care of yourself. The unfortunate, inevitable endpoint of living one’s life in a way you weren’t made to, and, in many ways, it’s inevitable if you’re Autistic – especially if you were diagnosed as late in life as I was.

This is something I don’t believe many health professionals, even those who work regularly with Autistic people, fully grasp.

The NDIS here in Australia, and other similar organisations throughout the world, also lack a full understanding of Autistic burnout, with funding often attached like an umbilical cord to the idea that the disabled Autistic person will do something that’s impossible for them to do – recover from their disability.

It’s why when my OT asked what was to her an innocuous question, I panicked. Work? Outside? With all of the people and myriad stimuli that completely overwhelm!

The 2018 Australian Bureau of Statistics ‘Autism in Australia Survey of Disability, Ageing and Carers’ found that the labour force participation rate for Autistic people of working age was 38 percent, compared to more than 84 percent for non-disabled people.

While research has revealed that more than half of all unemployed Autistic Australians have never held a paid job.

When on Saturday, during typically expansive ramblings with a very good friend of mine over multiple coffees, someone who’s known me for more than 25 years, who I shared a house with when we were younger and even sillier than we are now, the same question arose – Are you going to go back to work? – I told him that I would “see what happened”. Vague, non-committal, a full stop to that particular topic of conversation.

But I knew, as I was giving him my answer, that for me, there would be no going back – not ever.

It is an anticlimactic way to slink from one stage of life to another, that’s for sure. Not the way I pictured retirement going as recently as a couple of years ago.

The non-autistic version of myself, the one that was with me for 52 years and keeps telling me to just push through, does sometimes worry about what the future holds.

After all, for all intents and purposes I’m giving up the lifestyle everyone tells you to aspire to, in favour of one that looks like defeat, like failure, at least to the casual observer (unless off course this blog takes off! 😉).

As a younger man I had no “career plan” or aspirations, there wasn’t anything in particular I wanted “to do”.

Existing simply, living my life slowly and with ‘space’, felt like more than enough and fit me well.

It was a small life though. I had few possessions or money, and was often incredibly lonely as I battled depression, and, for a period of time, suicidal thoughts.

But, importantly, my self-imposed cocoon did bring me some small measure of comfort, of protection. Infrequent interactions with the outside world meant my anxiety was more manageable, the flame on any simmering Autistic burnout, low.

In hindsight I was, without even realising it, living life the way I was meant to: within the strict confines of a box that didn’t allow much, or many people, through.

Throughout the past 30 years, however, the cycle of working in a job, becoming overwhelmed, and then resigning in order that I might recuperate for weeks or months at a time before embarking on the next assault, has taken its toll. It is now with genuine relief that I’m done with it, and the requisite Sunday-night blues.

That I need to take these steps to protect myself and preserve some semblance of ‘a life’ is, however, a blunt reminder of who I really am, a cautionary tale for those of you who are, or suspect that you might be, Autistic, and, hopefully, an illuminating lesson to those who aren’t.

It’s also a reminder to the people who know me – friends, family, even acquaintances – that this is me unmasking, living my life as I’m meant to live it, no longer judging my decisions and actions against the standards and expectations of the non-autistic majority.

It’s about living authentically and giving myself the best chance of overcoming the extreme stress and anxiety I’ve carried with me far too long.

I feel as if for all these years, inside, I was a house pet – maybe a basset hound – trying to live like a zebra on the African Savanna.

Well, my days grazing in fear of strike from countless wild creatures are over. I am (finally) that basset hound.

It doesn’t mean I’m giving up entirely on living, on fun, on excitement. Hell, even basset hounds like to go outside for a walk!

But knowing that I’m actually Autistic means that for the first time in a very, very long time, I’m doing what works for my specific set of (Autistic) circumstances.

The next 30 years is about being kind to myself and doing what I need to to work through the PTSD and trauma I carry with me from my past.

I’m sure that alone will prove challenging. But right now, it’s the best job I can think to do.

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  1. This is so validating, thanks Glenn. I’m also at the same point as you and am struggling with it, even though no longer working is such a relief. Thanks so much for your blog posts, they help so much. I really admire your openness and ability to express exactly how you are feeling / what you are experiencing. Such a wordsmith. Sending you hugs, Kate

  2. Glenn, I too am going through a later life autistic burnout and it is so good to read that I am not alone in what I am experiencing.
    I will never return to paid work and have struggled to come to terms with this.
    The relief I felt though once I managed to come to terms with it was immense.
    Thank you for all your writings and posts they have really helped me. Kind regards Matthew

    • Thanks Matthew, I’m glad the blog is helping you feel less alone in what you’re going through, just as comments like yours have helped me.

      It’s the guilt that I feel that has made it difficult to come to this decision to not return to ‘9-5’ work – that and the “choice” to say no to good money. I, like you, however, do feel a sense of relief now, which I’m sure will only grow as the weeks and months past.

      Take care, Glenn

  3. Hello Glenn,
    I was diagnosed with PTSD, along with its many painful features, years ago. This allowed me to be on a disability support pension. The Autism diagnosis 18 months ago provided me with a safety net. The thought of needing to go out into the world and participate as a paid worker again is impossibly daunting.
    Like you, I can handle anything social in small, careful doses. I can imagine how you felt when your OT commented about you going back to work. This would be enough to bring on a full-blown melt-down of anxiety to total frozen mode.
    I only have 9 months until I reach the old age pension level, and I am grateful to be getting old. How sad is that? At least the world judgement pushes all old age pensioners into one category of them not having to ‘work’.
    I actually never stop working (apart from when I’m in frozen mode), and I never stop trying to do things that are constructive. But I can only do this in solitude; a solitude that includes nobody even expecting anything from me.
    But this is the good part. I love creating stuff artistically. And I’ve recently invented a cheap and easy irrigation system. I don’t think I’ll do anything with it apart from private use, because I don’t want to interact with others.
    I wonder how many inventions are lost to the world because Autistic people can’t cope with the social aspect?
    Thanks for your blog.
    Cheers, Linda

    • I’m sure so much has been lost because Autistic people struggle socially, Linda, as you suggest. And because society largely only ‘allows’ there to be one way of doing things. The COVID pandemic moved the needle ever so slightly on that front. Sad though that it takes something so extreme to even achieve that.

      And I understand what you mean about getting older. I’ve always though that at retirement age I would come into my own, so to speak.

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