Autism
I spent 65 years as an undiagnosed autistic person. For fifty of those years, I was always tired. During the last 20, I slowly slumped into a crippling exhaustion which just about finished me off. I had no idea I was autistic. Processing this has been like being hit by a car—flattened, battered, and limping for a long time. (I think the car was less painful!) I hope these notes can be helpful if you are in a similar place or are close to someone who is.
Does it really matter? Dealing with other life issues has often been compromised by my undiagnosed autism, our brains work differently. If nothing else, autism has a long list of comorbidities, of which I have several. It is clear that the lack of diagnosis has made these worse. Ninety percent or more of autistic people over 40 are thought to be undiagnosed.
My main introductory article follows below. In the right side menu are short reflections on being autistic, arranged roughly the order they were written, with the latest articles at the top. Hopefully, there will be more to come. (17 August 2026)
o—o—o
Being Autistic
"That would be the neuro-spicey kicking in right there.1"
For several years I have been processing my children's blunt suggestion that I am autistic. They used the term "neuro-spicey," and I had to ask them what that meant. My apprehension of this suggestion has travelled from re-telling it as an amusing anecdote, through initial denial towards wondering, and on to acceptance without really realising the implications. That was followed by period of crisis where I felt everything I had ever understood about myself was up for question, and wondered if I would ever not be broken.
This essay does not go into the details of autism; look up the DSM5 for that or, better, watch the excellent presentation by Professor Francesca Happé CBE which is listed in the resources below. What I'm doing here is giving you one story; the truism that "if you've met one autistic person, you've only met one autistic person," is accurate. My experience of being autistic is different from that of other folk despite our commonalities. What I would recommend is that if you've had the suggestion that you might be autistic, don't fob it off. We live in a graced moment where this disability is increasingly well understood. What once may have been a stigmatising diagnosis is now likely to result in much better life and health outcomes for us. Living undiagnosed for sixty-something years has had serious health outcomes for me, damaged relationships, and caused a lot of misery I could have done without.
o—o—o
I never fitted in. All the signs for autism were there, but you cannot see things when you have no concept of them, so I (and my peers) explained some of my more obvious symptoms in other ways, and ignored the rest as just part of life, not realising what they were. Above all, I masked and camouflaged my disability. Not in any conscious way. I simply saw the way others lived and copied them because, apparently, that was how life worked, even if it didn't make much sense. (Not to fit in was to ask for trouble, and I got enough negative attention as it was.) Often, not liking what I saw in kids my age, I tried to hang out with the adults, or simply went off on my own. The school bus was excruciating, and always felt dangerous. As I grew older and too big for bullies to take on safely, I pointedly did my own thing, much to the embarrassment of my younger sister.
The problem with masking is that it burns through energy, meaning my life has been a long decline into serious exhaustion as I became physically unable to power on through my discomforts and disabilities in a world which has often been discomforting, if not openly hostile. If the energy we use to process life were analogous to petrol, it sometimes feels like most people are driving through life in a hybrid Yaris while I burn through petrol like a v8 pulling a heavy caravan.
The secret to survival has been "muscle memory," both in the physical sense of doing physical things in exactly the same way, and also in the sense of following set routines. My work weeks have been highly organised and pre-planned. I've habitually used the same routes to travel. I do things in a set order. I rehearse all the possibilities for an upcoming event. I have spent my life closely scrutinising how people act so that I can at least appear to fit in.
This means I survive casual scrutiny, but in reality, I am quite dyspraxic. I keep walking into door frames and the corners of furniture, I usually spill the coffee grounds, and if I use anything other than the one keyboard I've had for 20 years, my error rate skyrockets. My family kindly describes me as "spatially challenged," but the blunt truth is that I am as clumsy as all blazes. This continues on into the way I do relationships.
My mind never stops. I remind myself to focus on making the coffee and immediately start thinking about something else and spill the grounds anyway, or realise 20 minutes later that I forgot to make the coffee! Ask me a question while I'm making your coffee and I'll pour your orange juice in, instead of the milk. Or have to walk away from everything for a minute of two.
But it's not just coffee. Staying on task, handling changes of plan, tuning out noise is always a problem. I still do a day's paid work each week, and recently hijacked a small side room instead of working in the shared space. For the same tasks, I now take four hours instead of six! But either way, I spend the next day in an exhausted fog.
On the other hand, if I do get focused on something, you will have a hard time getting my attention. I've always thought I was deaf. I have to ask my partner to repeat what she has just said multiple times a day. Eventually, I had a hearing test and discovered that my hearing is fine, even acute. But if I am thinking about something, I will miss most of your first sentence. We often find my partner has told me things in detail and I've not even registered that she was speaking. Or, I've responded, apparently cogently, and then immediately forgotten the entire conversation. And, unfortunately, I can get very focussed on something as simple making the morning coffee and totally miss something she says. This happened as she was standing next to me this morning. It's a daily thing.
Functioning in a shared or noisy space is "just about do-able." But neurotypical emotions and conversation are something else! I cannot fathom small talk. I used the train for several years, and each morning, four young women across from me would hold 3 concurrent conversations while reading phones and sometimes doing their makeup. It often seemed to me that no one was listening to anyone, yet it was clearly the highlight of their day! How does that work!?
In such situations, the casual observer may not notice my difficulty. I have a small index file in the third draw on the left of my mind, and here I store useful anecdotes for conversations. Often, they are quite appropriate, but if you know me well, you'll have heard some (or many) of them several times. I manage the problem by consciously collecting anecdotes and jokes in order to lessen the repetition. But there was the time when one of my children spoke of a workmate they had not yet heard add anything to a conversation other than "tangentially related" anecdotes. This was said with the inflection which, in our house, means "I'm not accusing you of anything, but you may find this is information worth reflecting upon." After church, and several conversations, I often begin to dissociate, with a white fog and hiss beginning to shut me down. I need to go off and inspect the stacking of the chairs or contemplate the portraits of past ministers.
On the plus side, this lifelong strategy has taught me to be a very good story teller, and it indulges my love of language. There is also a pedantic side to this language intelligence which sometimes drives people nuts!
There seems to be a fundamental difference between the way I process emotions—my own and others'—and the way I construct sentences compared to other people. My diagnostician said I use "cognitively mediated social interaction" where other folk "innately perceive" what is going on. This generally works for me because of long practice, and because I compulsively rehearse many conversations ahead of time, but it's exhausting, and if I am overloaded I tend to shut down.
I walk into a restaurant, or a coffee shop, or a church where I am to preach, and I check out the lighting; how will I survive it? Where are the fresh flowers? Do I need my ear plugs? Where do they want me to stand to preach vs. where can I feel comfortable; and where is it safe to walk while I preach, so that I don't fall off the steps? In the cafe, where can I sit with my back to the wall, and with a view of the door, and how will I manage the noise? And everywhere, I look at the people with a long practised check list: do I know anyone here; who does that person remind me of; who's looking grumpy, and who can I make eye contact with during the sermon so that I will be able to relax? Who is a threat? From what I can tell, other folk do this almost unconsciously, and without effort, "reading the room" almost instantly.
When it comes to emotions, one to one, the way people react when I'm upset, or would like me to react if they are upset, seems artificial and alien. I often find words of comfort that seem to help other people are unhelpful, trite, and sometimes offensive to me. If I use them when talking to other people, it feels fake, both for them and for me. I do not understand what is happening in this part of neurotypical life. It reminds me of meetings I would attend in another culture: I could often tell serious issues were being addressed, but had no idea what they were. The surface of the words, often quite clear, covered a subtext that was unreadable.
If you are deeply distressed, but need attention and information, I am your person. I can help you explore options. (My partner read this and began to laugh: "And if you're not needing attention and information, I'll still give it to you," she said.) You can share information that elsewhere has shocked people and led to your rejection, and I will not blink, for I have looked into darkness. I can likely help you re-frame your situation, or help you gain new perspectives for action. But there are also levels of emotional engagement it seems I do not understand.
I think this is not a lack of empathy—say that to Autistic people and you may not be well received. Rather, it's a different way of feeling and responding. When Allistic people talk about this difficulty with emotions and other communication the conversation sometimes seems tinged with the assumption that the Autistic person is the problem, rather than that, before anything else, neither person can really understand how the worldview or imaginaire of the other person works.
I will try to explain a little more of this: At a time when I was quite distressed, my partner hugged me with all the strength she could put into it, saying nothing. This was amazingly comforting, the distress evaporated. If I do that for her, I will physically hurt her. It's not wise to do it for female friends, for other reasons.
But when someone else is distressed, overwhelmed, hurting, there can come a point where I have nothing I can say. The cognitive mediation I mentioned above simply gets overloaded. I begin to shut down. I have to isolate myself emotionally—even physically—in order not to melt down. If I am in that sort of hyper-distressed place I must go off on my own and recite a litany of prayers that slowly drains the pain, which is hardly the thing to suggest to someone else. I have nothing to say to another person in the same situation because in my reality there is nothing to say. All one can do is withdraw and let things stabilise.
It is tempting to suggest this is some "male" failing because men are enculturated not to deal with emotions. Well, although this little non-binary chook was assigned male at birth, they have spent their life copying women. Either the patriarchy has won or, instead, something about my mind works differently. I think it's the latter. I am brim full of emotion, I cry during church most weeks, and when I'm reading books, or watching films, although not always at the same place as other people, it seems. Even the landscape frequently has me weeping.
I plodded along through life, honing skills for work and relating much like anyone else. Or so it seemed. The problem was that I was always tired. People commented on this. Lecturers warned me of the danger of being "eaten out from the inside," of "being too intense," and wondered "how are you able to keep going?" I used to say I had "never not been tired," but now realise when it began. After leaving university (training to be a research scientist while living in a university college) and now having to relate to people on more than just my own terms, I soon became exhausted. That escalated when I married. I would come home from the farm with my work team and we'd have 75 minutes for lunch. I'd wolf down some food and then, covered in diesel and dust, sleep soundly for 45 minutes on the bare boards of our flat. My partner would sometimes have to shake me awake. Much later, I would depart for Sunday evening services and the long drive through roo country to another congregation, weeping with the physical pain of exhaustion.
We came back to Adelaide for my training as a Uniting Church minister. Despite a toddler in the house, I stopped being tired in that way. There were essays, lectures, liturgy, routine, time alone. Even doing Supervised Field Education, I was in my element: less people and noise than my old job, and long periods of focus! But as soon as I started Clinical Pastoral Education I crashed and burned. I always assumed this was because of early life trauma in hospitals, (and that was certainly a factor) but I now suspect it had a lot to do with not being in control of my own time and environment. It's easy to pull off a few funerals here and there, or even a difficult hospital visit, if the rest of life is well nailed down. Put me in a humid and overheated hospital, where it's never clear what will happen next in the midst of all the noise and bright lights, and I soon cease to function. (Years later, a short hospital chaplaincy interim brought me to the brink of sick leave, and today, I will happily visit you in hospital, even helpfully, but then need to go home for a long afternoon sleep.)
When it comes to being clergy, autistic people, if I am any guide, "hack" the job. This includes those who are undiagnosed. I unconsciously organised my life so that I had a rigid, predictable schedule with lots of non-people time. It's very easy to do when you are a) smart and more so if you are b) multi-vocational. And it works incredibly well... until it doesn't. I managed a prodigious work load because life was set up, by me, to suit me—all my strengths. It looked like I was doing a great job, and great self care.
But I don't think it was the time management and self care they teach in corporate settings; it only looked like it. Brilliant time management strategies like Stephen Covey's Time Management Quadrant work for neurotypical people because that's who they are designed for. In my experience, the one constant of all such systems, including that one, is that they didn't work for me, and usually made me feel worse about myself. I have had to hack my own systems which enable me to fit into a typicality which I didn't really understand. Done unconsciously, the hack became the opposite of self-care! Enabling me to seem to fit in, it put me on the path to exhaustion. It gave me recovery time between events which were costing me far more energy than any of my peers. By my fifties, I needed frequent afternoon naps.
The technical term for this brewing disaster is autistic burnout, also sometimes called autistic exhaustion. It takes more than a few weeks off to get over this, and I've not yet succeeded. "Classical burnout typically stems from work, autistic burnout occurs due to social demands, masking, and living in an unaccommodating society.2" And because I was undiagnosed, all this was invisible. It looked like I was just falling apart. I might be the most blood-tested minister in the SA Synod due to all the attempts to find out what was wrong with me, and causing my debilitating exhaustion. Autistic exhaustion is also often accompanied by a loss of skills3, not so much from "doing too much, but from spending long periods of time adapting to environments that do not fit autistic needs.4" My inability to function was such that my partner wondered if I was suffering early onset dementia.
As church, I wonder if we are unconsciously encouraging autistic hacking of the job by our encouragement of multi-vocational ministry. My ministry "took off" when I became multi-vocational. That is because each of my (sometimes four) jobs gave me cover from the others; Smith Street congregation would say, "We can't bother Andrea because today is their North Terrace day," and so on. Hacking often looks like flourishing, but it is really an ultimately unsustainable workaround.
Which brings us back to masking or camouflaging, that often unconscious pretending we fit in. I did not even realise I was doing it! I thought I was doing what everyone else was doing, but I was processing way, way more, trying to pick up your cues on how to behave here. It is exhausting, and there came a time when I just ran out of puff.
It developed over years. As a young child I was taught that fidgeting (now often known as stimming) was not socially acceptable. And then I learned about body language in theological college—never look defensive, it puts people off. So I learned to sit very still, looking very relaxed and (later) aiming for lady-like as well. When we were talking about repetitive behaviours in my diagnostic session, the psychologist said,"But you have been very still." I said, "Yes, in order to look relaxed. But it's actually a disguised brace position. It puts weight on my shoulders and it's my version of a weighted blanket." I thought it was disguised, but the psychologist had already seen it. She replied, "It's quite exhausting, isn't it?"
I never quite pulled it off. A student was down to preach at one of my early congregations, and later, I asked how it had gone. It had been a good Sunday, but ever perceptive Elizabeth said carefully, "I think I am supposed to tell you this. The elder welcomed me before church and then said, "Dear, put your order of service on the pulpit here, and then walk around ignoring it for the rest of the service." I could never quite be still. As the autistic burnout crept up on me, I unconsciously began to sit with my arms tightly folded, so much more comfortable. And all the fidgets I'd been repressing since being a little child began come back unbidden over a period of several years. I no longer had or have the energy to keep them in check.
You may see here that I am answering the person who says. "But you've never done this before. You're just making it up so you can say you're autistic." Not so. I have not started doing these things. I've stopped being able to repress them or hide them. They've always been there to see if I was overstressed, or even more tired than usual. And the stimming is just one example of several autistic traits which I can not longer camouflague.
Where does this end? Is there good news?
I am having to learn to live all over again; it is plain that if I don't I will not survive long. The comorbidities common to autism have piled up. Life feels a bit like my first round of university, delightfully free of the role assigned to me by my school peers and where I never fitted in, but at the same time, very stressful as I worked out how to begin to live again.
I have had to tackle my tendency to perseveration (compulsive rehashing) head on. You can read about some aspects of this here. It has been spectacularly freeing and healing, but demands a discipline which is itself tiring.
I have learned that some nights it's simpler and better to just get up and write or read for an hour or two rather than toss and turn in bed, but that can have its own exhaustion.
I'm reluctantly accepting that I can do one thing in a day, and that that is enough; otherwise I will be exhausted and a pain to live with.
My housemates and I are learning we have to be scrupulously clear about what we are saying, and spend time clarifying. It's frustrating for all of us, but much worse if we don't.
We especially have to settle on routes beforehand if we are driving somewhere because both my partner and I read maps with a logic which is utterly incomprehensible to the other. I cannot drive and at the same time process her map. Thanks to the wonders of modern software we each have our own GPS profile programmed into the car.
I seek to be very conscious and deliberate about what I need to feel safe or to manage to function in public places. It is limiting, annoying, and incredibly freeing: Recently we drove interstate for the funeral of a dear friend. We had to stop half way, and watch it on a laptop. This was a huge disappointment, and also a triumph. Once, I would have pushed on through, been exhausted for a fortnight, and probably melted down and been generally disagreeable as well.
We have learned to joke about my autism, and to be open to others. My friends and my church have embraced me without hesitation. I am a fortunate person. The grief of discovering I'd spent over 60 years oblivious to my disability is slowly fading. I am glad to be who I am. I wrote in a draft for another document, "Survival is hard work in an environment which thinks of me as neuro-deficient rather than simply different from what it takes to be 'normal.' If Jesus offered to 'heal' this aspect of me, would I be interested? No, for I would no longer be what makes me me!"
Andrea (August 17 2026)
Books and resources I have found useful.
Why Can't I just Enjoy things? Pierre Novellie (Bonnier Books UK)
Novellie has a YouTube video that is an extended joke about autism and why it's hard to tell his girlfriend what he's thinking. It's at https://www.comedy.co.uk/online/fyi/574/pierre-novellie-youtube-special/ At one level it's a rambling schemozzle with too many f words, but then I realised it was a joke about the way we get all our ducks in a row to make a point.
Pretending to be Normal Liane Holliday Willey (Jessica Kingsley Publishers)
UnMasking Autism Dr Devon Price (Monoray 2022)
Spectrum Women, Ed. Barb Cook , Michelle Garnett, (Jessica Kingsley Publishers)
Changes in the Concept of Autism, Professor Francesca Happé CBE FBA https://www.gresham.ac.uk/watch-now/new-autism Simply excellent for combating old fashioned prejudices. From the blurb:
The conceptualisation of Autism has greatly evolved over the past several decades. In this review article, we focus on several areas where our understanding of Autism has changed: (1) from a ‘narrow’ definition to a ‘wide’ diagnostic criteria; (2) from a rare to a relatively common condition, although probably still under-recognised in women and older people; (3) a condition diagnosed predominately in males to now being identified in people of all genders; (4) from something affecting children, to a lifelong condition; (5) from something discrete and distinct, to a dimensional view; (6) from one thing to many ‘Autisms’, and a compound or fractionable condition; (7) from a focus on ‘pure’ Autism, to recognition that complexity and comorbidity is the norm; and finally, (8) from conceptualising Autism purely as a developmental disorder, to recognising a neurodiversity perspective, operationalised in participatory research models. We also explore opportunities for how research can become more generalisable, including in a global context, and make suggestions for areas currently neglected in Autism research.
1 A fateful statement from a family member…
2 https://embrace-autism.com/burnout-vs-autistic-burnout/
3 Ibid
4 https://embrace-autism.com/autistic-burnout-recovery/
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