The Labels That Helped Me Understand Myself - Part 3

In Parts 1 and 2 of The Labels That Helped Me Understand Myself, I explored the different aspects of my AuDHD and how recognising them has helped me understand myself. In Part 3, I'm taking a slightly different direction, looking at the ways I've spent a lifetime learning to work around difficulties I didn't even realise were connected to my neurodivergence.

The Art of Compensation

Throughout my life, I’ve been aware of things I found difficult that other people seemed to manage naturally. So I did what came naturally to ME. I learnt. I compensated.

Until very recently, I didn’t realise just how much I had had to do that, or why.

If I found something difficult, I looked for ways around it. I studied, practised, observed and developed strategies to help me do things that didn’t come easily. I thought that was just what everybody did.

I was quite deliberately trying to overcome my difficulties, but I was trying to hide them too. Because I’ve always loved learning, the process itself could be enormously rewarding. Some of those efforts have become lifelong interests, while others developed into skills I would eventually use in my work and pass on to others.

It wasn’t until after my autism diagnosis, 30 years after my ADHD diagnosis, that I began to recognise just how much of my world was based on compensation.

Compensation in this context involves developing strategies, skills or alternative ways of doing things to manage difficulties. Unlike masking, which often involves concealing aspects of ourselves, compensation can involve actively learning how to do something differently.

And of course, the two can overlap.

But being good at compensating does NOT mean the underlying difficulty has disappeared. It simply means I’ve become very skilled at working with it or around it. Neither does it dismiss the considerable stress and exhaustion involved in compensating for a lifetime of difficulty.

When Learning Became My Way of Coping

I've always been curious. Even as a young child, I questioned everything.

I was reading competently at a twelve-year-old level by the time I started school at four, so books became an enormous source of information and learning. If I didn't understand something, I asked questions. If I couldn't do something, I experimented until I found a way. I read books, made things, drew things and explored whatever caught my interest.

Unfortunately, much of the time, adults didn’t particularly appreciate my questions. I was either told that I was too young to understand, or my questions were brushed aside because they simply didn’t have the time or the answer.

As I got older, I was fortunate to have one or two primary school teachers who genuinely enjoyed answering my questions and discussing ideas with me. I loved those opportunities to explore a subject beyond what was being taught.

By high school, however, a realisation began to form. Adults didn’t know everything!

I rarely accepted that something couldn't be done simply because I found it difficult. I always wanted to understand how things worked and find out whether there was another way to approach a situation. Sometimes I was following my curiosity and my love of learning. Other times, I was trying to overcome something I struggled with.

Of course, at that time I didn’t know anything about compensation or neurodivergence, and neither did anyone around me. I just knew there were things that didn’t come easily to me, and I wanted to know why and to find ways to do them.

Over the years, this became a familiar pattern.

I would identify a problem, seek out information, learn new skills and practise until I found an approach that worked for me, often then passing this on to others. Some of those skills eventually became interests, qualifications and even businesses.

I developed my own ways of navigating the world.

The process of compensation wasn’t always a burden. Sometimes it opened doors I might never otherwise have explored. But the fallout from this extra workload would take its toll.

Finding My Own Way to Learn

By the time I reached high school, I was beginning to realise that I didn't seem to learn in quite the same way as everyone else.

I knew I was gifted. My IQ had been measured as high as 163, although my results varied depending on the circumstances, generally falling somewhere between 140 and 160.

Yet despite this, I went from being one of the top students at the beginning of high school to failing almost every subject by the time I finished.

I couldn’t understand it. If I was supposedly so intelligent, why was I struggling so much? I assumed there must be something seriously wrong with me. Looking back with the labels I’ve only recently learnt, I can recognise many of the difficulties I was experiencing, including things like executive functioning difficulties and dysgraphia.

Exams were a nightmare for me. I often knew the answers and could remember information, explain it verbally or write it down in dot points. But ask me to produce an essay and everything seemed to fall apart. The knowledge was there. Getting it onto paper in the required format was the problem. It meant that I failed my favourite subject – Ancient History.

Handwriting was difficult. I couldn't write legibly in cursive, so I printed my letters instead. But writing for long periods of time was also physically demanding. And my thoughts didn’t necessarily arrive in the appropriate order.

So, without realising it, I began developing my own ways of compensating. When I had an essay to write, I found ways to work with the way my thoughts arrived, rather than expecting them to emerge in a perfectly organised sequence. I’d begin by getting all my thoughts onto paper, without worrying too much about spelling, punctuation or the order in which things appeared. Then I’d go back through what I’d written, rearrange the paragraphs, rewrite sections, read it again and make further changes. Sometimes I’d physically cut my pages into separate paragraphs so I could move them around and work out how everything fitted together. It meant using reams of paper and doing an enormous amount of rewriting. This could take days or even weeks. Of course, we didn’t have computers to make editing easy. I didn’t even have a typewriter.

Interestingly, it's much the same process I use today when I'm writing my blog. The difference is that technology makes the rearranging and editing considerably easier.

I learnt that my brain worked best in the mornings, so whenever possible, I did my homework then. I would get up early to do it before school. If this wasn’t possible, it simply didn’t get done.

But despite all my efforts, my school results continued to decline because my compensations didn’t work in an exam situation.

Looking back, I can see that I wasn't failing at school because I lacked intelligence, knowledge or willingness to work. I was trying to meet expectations that didn't accommodate the way my brain processed and expressed information. And I was working extraordinarily hard to compensate for difficulties I didn't yet have names for.

Eventually, I was told I couldn't go to university and would have to find a job.

That was terrifying.

I was socially awkward, afraid of people and, looking back, emotionally immature. The prospect of entering the adult world, with all its unfamiliar expectations and responsibilities, was overwhelming.

I wasn't happy at home either, so I also needed to find somewhere to live and learn how to manage on my own.

But even though I was frightened, I believed I could figure something out.

I found work in an engineering office and, at seventeen, moved into a flat. I was enjoying my work, learning new things and beginning to find my feet in the adult world. I’d also just met the man who would eventually become my husband.

For the first time in quite a while, things seemed to be falling into place

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Only a few months later, I collapsed, ending up with ME/CFS and what I now believe was my first autistic burnout, at age eighteen.

A Lifetime of Learning to Move

Movement has always been important to me. I’m hyperactive and hypermobile. Being still is not an option. I loved fitness drills even as a child and practised Air Force fitness programmes before school every morning. I enjoyed learning ballet, particularly for the technical side: the posture, the correct positions, developing strength and flexibility, and working towards mastering a skill.

But while I could become technically proficient, learning choreography was another matter entirely. I struggled to copy movements as they were demonstrated, particularly when I had to coordinate my arms, legs, hands and head at the same time.

I could technically understand what I was supposed to do, but getting my body to reproduce it was difficult. It took enormous concentration and repetition and sometimes, it seemed, the harder I tried, the worse I became.

Teachers accused me of not practising enough, when in fact I’d been trying desperately to master the movements. Occasionally, I’d return to class after a break and discover I could suddenly perform something I’d previously struggled with, even though I hadn’t practised it in between. It was as though my brain took longer than other people’s to get things in order.

Over the years, I explored different forms of movement, including ballet, jazz, yoga and bodybuilding.

I always preferred the technical aspects of these disciplines, and I was always interested in understanding how the body worked.

After becoming unwell at eighteen, I had to stop attending classes for a number of years.

During that time, bodybuilding and yoga became important ways of developing strength and maintaining flexibility. Building muscle also helped me feel as though I was holding my hypermobile joints together.  I eventually completed my qualifications as a yoga teacher, not because I wanted to teach, but because I wanted a deeper technical understanding of the practice.

When my children began attending jazz, acrobatics and tap classes, I returned to jazz and ballet myself.

I was amazed by how easily the children seemed able to copy their teacher's movements. They could watch something once and reproduce it almost immediately. I couldn't. I needed to break movements down, repeat them and gradually piece everything together. Despite my technical ability, I often found the process exhausting and humiliating.

Eventually, my joints could no longer tolerate the high impact of ballet's jumps and leaps, and around the age of forty, I stopped.

I’d long been fascinated by bellydance, and when classes became available locally, I decided to give it a try. I thought it might teach me a more natural way of moving and, in fact, many of the movements felt surprisingly natural to me. Once again, I enjoyed the technical challenges, but also the way the dance form encouraged me to explore movement differently.

But, as usual, learning choreography was difficult. I could learn individual movements and perform them well, yet putting everything together into a routine required enormous effort.

Surprisingly, after about a year, I was invited to teach a beginner class. That eventually grew into my own successful bellydance school, which ran for a further sixteen years.

I found that while I struggled to learn someone else's choreography, I could create my own. That doesn’t mean it happened quickly. It could take me weeks to develop a routine, carefully working through the movements and sequences. I would then refine the choreography by watching my students perform it, seeing what worked and making adjustments. But ask me to improvise, to simply put on some music and dance without preparation, and I couldn't do it.

It's much the same with music. I'm technically a good musician. I can read music and play what is written, but ask me to improvise and I struggle.

I've come to recognise this as another example of what I call my download problem.

The ideas, knowledge and understanding are there in my head, but getting them out into the world is another matter. Whether I'm trying to put thoughts onto paper, movement onto the dance floor or music through an instrument, there's a difficulty translating what I know or imagine into something I can actually produce. Given enough time, I can often find a way to do it. But being expected to produce something immediately is a very different challenge.  However, what began as a love of movement, combined with a determination to improve the things I struggled with, eventually became something I could share with others.

I’m not lacking the ability to dance, write, create art or play music. I struggle with particular ways of learning and reproducing what is stored in my head. And over the years, I’ve developed an enormous range of skills to work around those difficulties.

I haven’t overcome every difficulty, but I’ve learnt to work with my strengths instead.

Making sense of other people

From a very young age, I was interested in the way people thought and behaved. I was often surprised that other people didn’t think the way I did or understand things in the same way. I had a strong sense of justice and a very definite understanding of right and wrong. I found it difficult to understand why other people didn’t always see things as clearly as I did.

I noticed what seemed acceptable and what didn't, and gradually developed ways of navigating social situations. But understanding people socially was another matter.

I was, and am, fearful of people and find it difficult to let anyone get close to me. I watch, listen and observe, trying to understand how people behave and what is expected of me.

Some of this is undoubtedly connected with my AuDHD, but I also experienced significant childhood trauma that influenced how safe I felt around other people. I can recognise how these experiences became intertwined. But I can also quite clearly separate them.

Over time, observing people and trying to understand their behaviour became almost second nature. I learnt to anticipate expectations, recognise patterns and adjust how I responded. But being able to observe and understand people's behaviour doesn’t make me feel comfortable around them. I’ve become quite skilled at navigating social situations while still feeling frightened, awkward or uncertain inside.

If I Couldn’t Be Smart, I Had to Be Helpful

As a child, I think I learnt quite early that being useful was one way of being accepted. Somewhere along the way, I began to believe that if I couldn’t be smart, I had to be helpful.

I took the Brownie and Girl Guide principles very seriously. I studied the handbooks and tried to live by their values, particularly the idea of thinking of others before myself and doing a good turn every day. Those principles have stayed with me throughout my life. I became very good at doing things for other people.

Yet I was often accused of being lazy, which never made sense to me.

I’ve always worked quickly and efficiently, often completing more work to a higher standard than people who work slowly and steadily. But because I work quickly, I might be found resting between tasks. Other people appeared busy for longer, and somehow that seemed to count for more than what had actually been accomplished. I didn't understand why the appearance of working was sometimes valued more highly than the work itself.

When Compensation Becomes Competence

When my daughter was diagnosed with ADHD at the age of four, I received my own ADHD re-diagnosis at the same time. I was shocked by how little information and support was available.

The paediatricians and psychologists we encountered didn't seem particularly interested in learning more about the condition.

So I did what I'd always done when I needed to understand something. I started researching. I borrowed every book I could find at the library, searched the internet and read everything I could get my hands on. I wanted to understand what ADHD was and how it made us think differently, but I also wanted to be able to explain it to other people.

And if I was going to teach others, I felt I needed qualifications. I found a distance-learning Child Psychology diploma through the International Correspondence School. My support tutor was based in Edinburgh, and I made sure he was supportive of my need to learn about the differences between neurotypical and ADHD ways of thinking. Wherever possible, my essays and assignments focused on ADHD.

The course helped me understand how ADHD brains function differently from so called normal brains. It confirmed what I'd always suspected: we really did experience and process the world differently.  It also allowed me to learn and study in my own way.  I was able to do my work early in the morning and write and re-write my essays in the way that I had developed.  I passed every exam with a 99% average.

By this time, I also had a four-year-old with ADHD and a six-month-old baby, and I was determined to find a way of parenting that worked for our family.

Luckily, I remembered my own childhood very clearly. I remembered how I felt, how I responded to the way I was parented and how little some of the adults around me understood what I was experiencing. I didn't want my children to grow up feeling the same way.

So I watched, observed and learnt from them, just as I'd spent my childhood observing the people around me. Gradually, I developed a behaviour management approach that worked for our family. I also knew there were other families struggling with the same lack of understanding and support.  So I became involved in running the local ADHD/Asperger's Support Group and began teaching behaviour management classes.

I found a specialist in Brisbane and persuaded him to establish a monthly outreach clinic in our area. I organised talks at schools and community groups, helping parents, teachers and others understand what ADHD was and how they could better support children and families.

I also worked with the Royal Prince Alfred Hospital’s Friendly Foods program, which had helped me so much in the past (another story), learning about food sensitivities and how they could affect behaviour and wellbeing.

At the time, ADHD and Asperger’s were often regarded as different ends of the same spectrum, with the belief that you couldn’t have both within the same person or family. I didn’t agree with this. What I was observing, both in my own family and through my work with other families, didn’t fit neatly into that understanding. Both my nephew and brother had been diagnosed with Asperger’s whilst my daughter and myself had ADHD. 

However, eventually, I think I became too tired to keep pursuing the question.

My daughter received the help she needed, and I was able to help many other families find their way forward.

The Hidden Cost of Being Capable

I've judged myself by how difficult I found things rather than by what I managed to accomplish.

Motherhood was a particularly painful example.

I loved my children and was determined to give them the understanding and opportunities I hadn't always received myself.

But the ordinary demands of everyday life were often overwhelming. I struggled with executive functioning, although I didn't have the label for it at the time. I found it difficult to manage the constant demands of a household and family.

Then there were the sensory challenges. Noise, mess, food preparation and the constant activity of family life could leave me feeling completely overwhelmed. I've never enjoyed cooking. I need my surroundings to be relatively tidy, and I need time alone. But with two children to raise, a farm to work on and everything else I was doing, there wasn't much opportunity for that.

I was often exhausted, unwell and in tears. And yet I kept going.

I was there for my children. I organised their activities, supported their interests, drove them to classes and competitions and fought for the opportunities I believed they deserved. I rarely missed a beat.

But because it was all such a struggle, I thought I was a bad mother.

I looked at other people who seemed to sail through the ordinary demands of life and wondered why I couldn't do the same. I resented being constantly tired and overwhelmed. I resented how hard everything felt. And then I felt guilty for feeling that way.

I sometimes wonder whether my children remember the days I spent in tears

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For years, I measured myself against the things I found difficult rather than recognising everything I was actually doing. I thought being a good mother should feel easier than it did.

It never occurred to me that I could be a good mother and still find motherhood incredibly difficult. Or that being capable of doing something didn't mean I could do it without an enormous personal cost.

Learning When I No Longer Need to Compensate

I don't regret the skills I've developed or the people I've helped. But I no longer want to spend my life overcoming difficulties simply to make things easier for everyone else.

I still have so much I want to learn, explore and create.

I'm 63 now, and I deserve to live my life my way.

I'm still learning how to do that and sometimes saying no feels terribly selfish.

But perhaps the most important thing I've learnt about compensation is that just because I can find a way to do something doesn't mean I have to.