In Part 1 of this series, I explored some of the labels that have helped me understand how my AuDHD brain works.

This time, I'm looking at how I experience the world around me, how I've learnt to respond to it, and the ways I've adapted myself over a lifetime.

One of the biggest revelations since my autism diagnosis at 61 has been recognising just how much effort I've put into appearing comfortable, capable and in control, even when I was anything but.

And thinking that everyone lived their lives that way.

For much of my life, I didn't understand why certain things affected me so strongly. I simply learnt ways to manage, hide or work around them.

Sometimes those strategies were incredibly useful. Sometimes they created difficulties of their own.

More often than not, I didn't realise how much energy these strategies were costing me.

The more I've  learnt, the more I understand that these experiences aren't separate little boxes. They're interconnected, each one influencing the others.

Once again, the labels haven't changed who I am. They've helped me understand who I've always been.

Masking (Camouflaging)

I had never realised just how much of my life I'd spent masking until after my autism diagnosis.

Masking describes the conscious or unconscious ways we hide, suppress or adjust aspects of ourselves to meet other people's expectations.

Looking back, there are some things that I I was conscious of early on.   I can remember rehearsing conversations in my head from as early as three years old. I'd imagine what I wanted to say, how the other person might respond and how the conversation might continue.

Sometimes this helped me decide whether having the conversation was a good idea at all.  

I thought everyone did this. It never occurred to me that it might be something worth questioning. And inspite of this, I was accused often of not thinking before I spoke.  If only they knew!

By around the age of ten, I was consciously trying to change how I presented myself.

I remember spending hours in front of a mirror practising how to smile because I was constantly being told not to look so miserable. "You'd be much prettier if you smiled."  "What have YOU got to worry about."  Smiling didn't come naturally to me in the way people expected, so I studied it and learnt how to do it.

When I eventually had my crooked teeth (another reason for the practice) straightened at forty, I had to learn to smile all over again!

Over the years, I found many other ways to make myself appear more comfortable, confident and socially acceptable. I took deportment lessons, practised conversations and became very aware of how I looked, moved and behaved around other people.

Another form of masking I hadn't fully appreciated was changing my accent.

I was born in England and had quite a posh English accent when I came to Australia as a child. Unfortunately, I was bullied for being English, so I consciously practised losing my accent.

And I succeeded. Perhaps a little too well.

My accent became so Australian that I no longer sounded like myself.  My English accent occasionally returns a little, and I've retained the English pronunciation of many words, but I still sound unmistakably Australian.  The accent I learnt to use to avoid being singled out has never really felt like mine.

Even to this day, it "grates upon my soul".

But looking back, I can also see that one of the biggest parts of masking was learning to conceal just how overwhelmed I was.

I can trace this back at least to my school years if not before.

I was constantly learning to change or control things about myself to fit other people's expectations. But all that monitoring and adjusting took energy. It added to the overwhelm I was already experiencing from my surroundings and the demands placed upon me.

Then I had to work even harder to conceal just how overwhelmed I'd become.

The more I masked, the more overwhelmed I became. And the more overwhelmed I became, the harder I worked to mask it.

Perhaps the biggest revelation was recognising that the person I masked around most was my own husband. I think that was because our relationship mattered so much to me, and I was afraid of doing something that might threaten it.

Until my diagnosis, I actually hadn't realised how much I was masking because I didn't always know where the mask ended and I began.

But since then, I've gradually begun to recognise my patterns and question whether I still need the masks.

Stimming

Stimming, short for self-stimulatory behaviour, describes repetitive movements, sounds or other behaviours that can help with sensory and emotional regulation, concentration or simply feeling comfortable.

Throughout my life, I was told to stop bouncing, swaying, rocking, twirling or sucking my hair, tapping and all sorts of other little movements.

So I worked at toning them down or creating hidden ones - like curling and uncurling my toes in sequence inside my shoes.  Rocking on the sides of my feet instead of bouncing up and down.  rubbing my finger tips together and many more, depending on where I was.

I was aware that I bounced or rocked or chewed more when I was stressed, and I think I understood instinctively that these movements were helping me somehow.

But in those early days, there was not the language or understanding to explain it. I didn't know these behaviours were actually helping me regulate myself and my nervous system.

Since my diagnosis, I've consciously started allowing some of these movements to creep back into my life without being edited.

When I'm stressed, I allow myself to bounce on my toes, sway, go outside and have a swing, or hang upside down.

I'm learning that I don't have to stop doing something that helps me simply because someone once told me I should.

Misophonia

Misophonia was a term I discovered long before my autism diagnosis, and I still remember the relief of discovering that it was a recognised experience.

I'd spent years wondering why certain sounds could provoke such an immediate and intense reaction in me.

Chewing, slurping and clicking jaws are amongst my worst triggers. Interestingly, these sounds generally only bother me when they come from adults. Children and dogs don't usually have the same effect.

Even more strangely, some of my own internal body sounds can be difficult to tolerate. Hearing my breathing, heartbeat or the humming sensation of muscle tension can be incredibly unsettling.

Yet I can live quite happily with tinnitus!

Misophonia isn't simply disliking a noise. It's an intense emotional or physical reaction to particular sounds, often creating feelings of distress, anger, anxiety or an urgent need to escape.

Chewing is probably my worst trigger. At home, I need some background noise during meals, usually the television or radio. As a child growing up, having to eat in silence at the dinner table,  was a nightmare.  It would trigger tears or meltdowns on many occasions. For this I would be reprimanded or sent to my room.

Interestingly, because I find it difficult to filter sounds and tend to process everything I hear at once, I don't need much background noise to take my attention away from the chewing. Just having another sound present can make an enormous difference.

We live in the country, where sometimes there is almost no background noise at all. Whilst I generally love the peace and quiet, silent mealtimes can be difficult.

Even sitting outside with my husband after a long day can become stressful. In the stillness, the sound of him drinking a beer or eating a few snacks can become so unbearable that I have to retreat inside or try to introduce other sound.

The distress usually disappears quite quickly once I'm away from the sound. Unfortunately, it's often replaced by the feeling that I'm rejecting my husband's company, when that's the very last thing I want to do.

Discovering that there was a name for this experience was such a relief.

It didn't make the sounds any easier to tolerate, but it helped me understand that my reactions weren't simply me being unreasonable or intolerant.

Once again, having a label gave me a way to understand something I'd experienced for much of my life.

Sensory Overload

I've always been sensitive to my surroundings, but understanding sensory overload has helped me recognise why seemingly ordinary situations can sometimes become unbearable.

Sound is probably my biggest challenge. I find it difficult to filter background noise, so conversations, music, electrical hums and other sounds can all seem to arrive at the same volume. My brain doesn't automatically push the unimportant sounds into the background.

But sound is only part of it.

Heat is another major trigger. I struggle when temperatures rise above about 25°C, which can make living in Queensland particularly challenging!

Flickering lights, lots of movement, crowds, people standing too close, and certain smells — particularly chemical or plastic fumes — can all add to the sensory load.

Then there are particular textures and sensations. I love being outside in the rain, but wet feet inside shoes, we socks, wet towels or wet floors can be surprisingly difficult to tolerate.

Sometimes I can manage one or two of these things quite comfortably. It's when they begin accumulating that I run into trouble.

I've learnt to recognise a fairly predictable progression. First, I begin to feel disconnected or light-headed. Then I become anxious, panicky or teary, and eventually I feel an almost desperate need to escape.

If I can't remove myself from the situation, it can lead to a meltdown.

Looking back, I could probably count the number of full-blown meltdowns I've had in public. That doesn't mean I wasn't experiencing meltdowns. I had simply become very good at instinctively recognising when I needed to escape before anyone witnessed what was happening.

If I started getting teary, I might blame it on hayfever and find a way to leave.

I knew that stress had something to do with these reactions, but I hadn't understood the connection between sensory overload and meltdowns.

Learning about sensory overload has helped me recognise the warning signs much earlier and understand what's happening.

Rather than pushing through until everything becomes unbearable, I'm learning to respond to those early signals by leaving, resting or reducing the sensory input.

I don't have to wait until I reach breaking point before acknowledging that something is too much.

A little more about Sensory Overload can be found in my blog When You Can Hear Everything

Rejection Sensitive Dysphoria (RSD)

Rejection Sensitive Dysphoria, or RSD, is a term commonly used to describe intense emotional responses to real or perceived rejection, criticism or disappointment. It isn't a formal diagnosis, but it can be a useful way of describing an experience.

For me, it isn't necessarily just about someone openly rejecting me. Sometimes it's the feeling that I've disappointed someone, said the wrong thing or somehow failed to meet their expectations.

What I find particularly difficult is how long those feelings can stay with me.

I can replay a conversation or experience over and over, analysing what happened and wondering whether I could have done something differently.

Even years later, a memory can bring back the same feelings of hurt, embarrassment or rejection, almost as though the event has just happened.

Being told to 'just let it go' doesn't make those feelings disappear.

Another aspect I've come to understand is how much, repeated criticism throughout childhood, can shape the way we respond to rejection and perceived rejection.

Typically, children with ADHD can receive considerably more corrective feedback than their peers. I have often heard the figure of 20,000 additional negative messages quoted, and although I understand that the precise number isn't scientifically established, I can certainly relate to the experience.

Being repeatedly told to stop moving, stop asking questions, stop being silly, stop doing things differently, behave appropriately or try harder can teach us to constantly monitor ourselves.

For me, this connects directly with masking. I learnt to suppress my stims, change how I presented myself and conceal my overwhelm. Yet all that effort contributed to the stress and overload I was already experiencing.

And when I experience criticism or rejection, I don't just feel the hurt. I analyse what happened, replay the conversation and try to understand what I could have done differently.

Sometimes those feelings can return years later with surprising intensity.

Learning about RSD has helped me understand this pattern, although I also recognise that a lifetime of criticism and the ways I've learnt to respond to it may play a part.

Once again, these aren't isolated experiences. They are interconnected parts of how I've learnt to navigate the world.  

You can read a little more of my experience in my previous blog Living With Rejection Sensitivity Dysphoria: My Story.

Alexinomia

Alexinomia was another term that stopped me in my tracks when I first came across it.

It describes the difficulty or discomfort some people experience when using another person's name.

For as long as I can remember, I've felt uncomfortable addressing people by their first names. It can feel strangely personal, embarrassing or simply wrong, even when the person is someone I know very well.

In my first job, I found it almost impossible to address my colleagues by their first names. I was teased because I continued calling them Mr Jones, Miss White and so on. Using a title and surname felt much more comfortable.

Even now, I rarely use my best friend's name when speaking directly to her, and I find it particularly difficult to say my husband's first name.

Interestingly, this doesn't apply to everyone. I have no difficulty using my children's names, my brother's name.

But perhaps the strangest part is that I find hearing my own first name even more uncomfortable than using someone else's.

For a long time, I avoided using my own name in my business.

And here's another interesting contradiction: adding a surname can make a difference. Saying or hearing a full name feels much easier than using the first name alone.

I have no idea why!

I used to think this was simply another one of my peculiarities. Discovering that other people experience similar discomfort was such a relief.

Once again, finding a word for something I'd experienced all my life helped me understand that I wasn't necessarily alone in it.

Dysgraphia

Dysgraphia was another label that helped me make sense of difficulties I'd experienced throughout my school years and beyond.

I loved learning, particularly subjects like Ancient History, and had no difficulty gathering and remembering information. But getting that knowledge out of my head and onto paper was another matter entirely.

My handwriting was slow, painful and inconsistent, and I struggled enormously with written assignments, particularly essays.

I could give you all the facts in dot points, but ask me to turn them into an essay and my mind would go blank.

For years, I couldn't understand why knowing something and being able to write about it seemed to be two entirely different things.

Understanding dysgraphia helped explain some of those difficulties. It also encouraged me to recognise that the way information is requested can make an enormous difference to my ability to communicate it.

The knowledge was there. I just needed a different way to get it out.

I've explored this experience in more detail in my previous blog, The Download Probliem: When Dysgraphia plus AuDHD Blocks Access to Your Own Mind.

Autistic Burnout

Of all the labels I've discovered, autistic burnout has probably been one of the most important in helping me understand my life.

Looking back, I can recognise what I now believe was my first autistic burnout at the end of my school years.

School had demanded so much of me. I was constantly trying to fit in, keep up, manage sensory input, switch between different ways of thinking and conceal just how overwhelmed I was becoming.

The very strategies I'd developed to cope were adding to my exhaustion.

By the time I finished school, I simply couldn't keep going in the same way.

Over the following decades, I experienced several more periods of profound exhaustion and reduced capacity.

I had been diagnosed with ME/CFS and fibromyalgia, so I naturally attributed much of what I was experiencing to those conditions.

When my body hurt, I assumed it was a fibromyalgia flare. When the brain fog increased, my ability to cope diminished and everyday tasks became more difficult, I assumed it was my ME/CFS.

I also blamed myself. I wondered whether I was simply lazy, anxious or not trying hard enough.

Eventually, I stopped seeking medical help during these periods because I expected to be told the same things I already knew.

Then I came across the term autistic burnout.

I can still remember my reaction when I began reading about it. I cried. Not just a few tears, but deep, uncontrollable sobbing.

Even now, I find it difficult to explain exactly what I felt.

It was almost as though, for the first time in my life, someone had finally recognised me.

I could see the pattern of my life described in words I had never had before. The repeated periods of exhaustion, the overwhelm, the masking, the increasing difficulty coping with things I'd previously managed.

It was this discovery that prompted me to seek an autism assessment.

Receiving my diagnosis at 61 brought enormous relief. Finally, so much of my life began to make sense.

But that relief was followed by grief. Grief for the years I'd spent struggling without understanding why, for the times I'd blamed myself, and for the person I'd worked so hard to become because I hadn't known I could simply be myself.

Understanding autistic burnout didn't mean I immediately knew how to prevent it.

In fact, it took experiencing another significant burnout before I really began putting what I'd learnt into practice.

But this time, I had a different understanding of what was happening.

I began recognising the early warning signs, questioning the expectations I placed upon myself and learning that rest alone wasn't always enough. I also needed to reduce demands, sensory input, decisions and the constant effort of trying to meet everyone else's needs.

Perhaps most importantly, I've been learning about capacity and boundaries.

Instead of waiting until I reach the point of collapse, I'm learning to recognise what I can realistically manage and to protect the things that matter most to me.

I still have a lot to learn, and recovery isn't always straightforward.

But understanding autistic burnout has given me something I didn't have before.

Not just an explanation for what happened in the past, but a way to recognise what is happening before I reach that point again.

Understanding Myself Differently

When I began exploring these labels, I thought I was just learning more about autism and ADHD.

I hadn't really anticipated  how much they would change the way I look back over my life.

I can now recognise the little girl practising her smile, rehearsing conversations and trying desperately to hide her overwhelm.

I can see the teenager who learnt to change her voice and suppress her movements to avoid criticism.

I can understand the adult who became so skilled at appearing capable and in control that even she didn't recognise how much effort it was taking.

And I can see how all those experiences connected, gradually contributing to a cycle of masking, overwhelm and exhaustion.  You can read more about my experience of Autistic Burnout in Complete and Utter Collapse: What Autistic Burnout Really Feels Like

I can also see that I developed an enormous number of ways to navigate a world I didn't always understand, and which didn't always understand me.

Some of those strategies served me well. Others came at a considerable cost.

Now that I have new language to help me understand them, I can begin deciding which ones I still need and which ones I'm ready to let go of.

I'm learning to allow myself to move when I need to move, leave when I'm overwhelmed, protect my capacity and stop constantly measuring myself against other people's expectations.

Perhaps that's the greatest gift these labels have given me.

Not permission to make excuses for who I am, but permission to understand myself and live in ways that work for me.

The labels haven't changed who I am. They've helped me recognise the person who was there all along.