Autism, ADHD and Me

How I found an explanation for almost everything, and why I eventually started looking beyond it

By Craig Fookes | The Mind Works

During what I've come to call my Happiness Project, I've spent a considerable amount of time trying to understand myself. Why I think and feel the way I do. Why certain things seem to come so easily while others can feel almost impossibly difficult. Why I can be extraordinarily productive one day and barely able to get off the sofa the next.

And, perhaps most importantly, why I've spent so much of my life feeling somehow different from other people. Of course, I don't live under a rock. So it was inevitable that, somewhere along the way, I would encounter the enormous amount of information being shared online about ADHD and autism.

And, frankly, it was like somebody had switched the lights on.

Finally, an explanation

ADHD seemed to explain my dramatic fluctuations in productivity. Sometimes I could become almost frenetically productive, completely absorbed in something, working for hours with extraordinary concentration. Other times, even relatively straightforward tasks felt impossible. I could know exactly what needed doing, want to get it done, and still feel physically incapable of getting started. It also offered an explanation for some of my experiences with alcohol, reward-seeking and other behaviours. I read about dopamine, motivation, executive functioning, hyperfocus and the increased vulnerability to addictive behaviours associated with ADHD.

Then there was autism. The need for an intense special interest. The tendency to become completely absorbed in a subject.

Sensory experiences that seemed to bother me more than they bothered other people. Certain noises. Certain textures. The feeling of being overwhelmed by something as ordinary as going shopping or leaving the house. And what I came to understand through discussions of pathological demand avoidance, or PDA, seemed to explain why demands that looked perfectly manageable from the outside could sometimes make me want to shut down completely.

I could desperately want closeness, companionship and understanding, yet sometimes withdraw from everyone to the point of almost complete isolation. The more I read, the more I recognised myself.

So naturally, I did what any self-respecting person with a suspected combination of ADHD hyperfocus and an autistic special interest might do. I turned my ADHD hyperfocus and my autistic special interest towards studying my own neurodivergence. You can imagine how that went. One hell of a rabbit hole.

Looking back, everything made sense

It wasn't just my current experiences that seemed to fit. My entire history began to make sense too. The difficulties I'd experienced at school. The hours spent alone in my bedroom, poring over CD covers, reading lyrics and becoming completely absorbed in music. Feeling like an outsider. Feeling different and misunderstood.

Being painfully shy, wanting desperately not to be, and sometimes overcompensating by acting out. The difficulties I'd experienced with relationships, emotions and understanding why certain situations affected me so intensely. It was as though somebody had handed me an explanation for experiences I'd spent decades struggling to understand.

And it was enormously validating. Perhaps I wasn't simply lazy, inconsistent, overly sensitive or somehow defective. Perhaps there was a reason why things had always felt so difficult. Then the validation began to turn into something else.

From understanding to resentment

I began looking back over my life and wondering why nobody had recognised these things sooner. Surely the signs had been obvious? Why hadn't somebody picked up on them at school? Why hadn't I understood this about myself? What might my life have looked like if I'd received the right support earlier? Perhaps I wouldn't have found so many things so bloody difficult. Particularly emotions and relationships.

I also found myself wondering what other people experienced. What did it actually feel like to be normal? Which was rather ironic, given that I had a sign in my therapy room reminding clients that there's no such thing as normal.

Nevertheless, I wanted to know. I found online communities full of people describing experiences remarkably similar to mine. I read more books, articles and research. I watched more videos. And the sense of recognition became even stronger.

Eventually, I felt I'd found my answer. I was autistic. I always had been. And alongside that, I definitely recognised traits of ADHD. At least, that was how I understood myself at the time.

When an explanation becomes part of our identity

Something interesting began happening. I started noticing the little things I did. The way I liked the remote controls arranged. The particular way I washed up. Or the days when I didn't wash up at all. My difficulty concentrating. My tendency to become completely absorbed in spreadsheets or whatever happened to interest me. The extraordinary resistance I could sometimes experience when faced with certain tasks. Business administration. Financial matters. Asking other people to do things to help me.

Sometimes the difficulty wasn't merely psychological. It felt intensely physical. My head could feel as though it were full of rocks.

I could feel almost paralysed by something I knew needed doing. And the contrast between what I could achieve at different times was extraordinary. I'd recently managed to run a marathon. Yet on other days, it could feel as though somebody had switched off my arms and legs. How could the same person be capable of both?

The neurodivergence explanation seemed to account for almost everything. And I began interpreting an increasing number of my experiences through that lens.

Looking back, I can see how easily an explanation can become part of our Sense of Self.

Something that starts by helping us understand our experiences can gradually become a way of interpreting almost everything we do. That isn't necessarily a bad thing.

For many people, discovering they are autistic or have ADHD provides enormously valuable understanding, validation, appropriate support and a more compassionate view of their own history. But I began to wonder whether I was still asking enough questions.

Then I encountered a different perspective

During my reading, I came across a 2018 paper titled "Pathological Demand Avoidance: symptoms but not a syndrome," written by Jonathan Green and colleagues, including researchers associated with Newcastle University. The paper questioned whether PDA should be understood as a distinct syndrome and encouraged consideration of the wider developmental and contextual factors influencing demand-avoidant behaviour. That caught my attention. Not because it disproved autism, ADHD or the experiences I'd been reading about. It didn't. But it encouraged me to think more carefully about something I'd noticed in myself. My difficulties weren't always present to the same degree.

In fact, they could fluctuate dramatically. Some days, I could open my emails, read them, reply and get on with my day without giving the process a second thought. On other days, the same task could feel almost impossible. Sometimes the noise of the kitchen extractor fan really bothered me. Sometimes it didn't. There were periods when I felt completely shut down and withdrawn. Yet on other days, I could be outgoing, engaged, sociable and, depending on whom you ask, perhaps even quite funny.

I didn't always find other people difficult. I could connect with them, understand them and empathise with them deeply.

That's an important part of my work as a therapist. I began to ask a different question. Rather than simply asking which condition explains this behaviour?, I started asking: What is different about the days when I can do these things and the days when I can't? That question changed the direction of my exploration.

Would a diagnosis change anything for me?

I also began considering whether I wanted to pursue a formal assessment. Perhaps I am autistic. Perhaps I have ADHD. Perhaps both are relevant. A formal assessment might help clarify that.

But I wanted to think about what a diagnosis would mean in practical terms for my own life.

Would it change the support available to me?

Would it alter my relationships?

Would it lead to treatment or adjustments I wanted to pursue?

Would it help me understand experiences I hadn't yet been able to explain? For some people, the answers to those questions are extremely important.

A diagnosis can provide access to clinical treatment, workplace adjustments, educational support, greater understanding and other practical benefits. For me, the immediate answers were less clear. The people closest to me already knew me as I was. They knew I could be a bit odd. They knew I could become completely obsessed with spreadsheets. And they generally supported me without needing a particular explanation for why I was the way I was.

Medication wasn't an option I particularly wanted to pursue, given some of my earlier experiences.

And I wasn't convinced that a diagnosis, in itself, would answer the question that was increasingly important to me.

Why did my capacity fluctuate so dramatically? So I decided to explore that question instead. And, inevitably, I built a spreadsheet.

I started measuring everything

And I mean everything. Sleep. Heart rate. Heart-rate variability. Food, calories, protein, fibre, carbohydrates, fruit and vegetables. Supplements. Steps, exercise, exercise type. Hours worked. Hours rested. Meditation. Cold plunges. Social media. Alcohol. Time spent outdoors. Time spent speaking with friends.

Then I started recording the more subjective things. Mood. Positivity. Energy. Motivation. How I'd been feeling.

I wanted to understand whether there were patterns behind the enormous differences in my day-to-day experiences.

Some things began to stand out.

• Sleep made a considerable difference.

• Alcohol and poorer eating habits often coincided with worse sleep.

• Resting, having fun and feeling connected to other people appeared to be enormously important.

• Low mood often coincided with reduced energy.

• Financial administration was a particularly reliable source of anxiety.

• And perhaps most significantly, I began to recognise that I wasn't recovering particularly well.

  
  

I was asking an enormous amount of myself. I expected to be productive, positive and proactive. Preferably all the time. I wanted to work hard, exercise, eat well, develop my business, maintain relationships, learn, improve and make progress. And when I couldn't do those things, I often responded by putting even more pressure on myself.

Some of the things I believed I should be doing to improve my life were becoming additional demands.

My difficulties didn't simply disappear. But as I began paying more attention to the relationship between demands, recovery, health, emotions and circumstances, many things improved. I had more useful information about what helped me and what made difficult periods significantly worse.

These were observations from my own life, not a controlled experiment, and they couldn't establish the causes of every difficulty. But they gave me something practical to work with.

So, am I neurodivergent?

I've asked myself that more than once. More recently, I learnt that the terms neurotypical and neurodivergent aren't themselves formal clinical diagnoses.

They're broader descriptions of differences in how people think, process information and experience the world. Autism and ADHD, on the other hand, do have established diagnostic criteria. And I recognise that the difficulties associated with them can also be influenced by sleep, stress, health, environment and available support.

So the fact that my experiences fluctuate doesn't, by itself, establish whether I am autistic or have ADHD. But I've become less interested in trying to place myself into a particular category.

My own experiences don't align neatly with every description I've encountered. And, at this stage of my life, I've decided that I don't need to define myself as neurodivergent. I simply have my way of being. And I'm rather less interested these days in making every part of it fit a label. That isn't a statement about anybody else's identity, diagnosis or decision to pursue assessment.

Nor does it mean that the difficulties I've experienced weren't real. They were. They are. Some have been extraordinarily difficult. But what matters most to me now is understanding them well enough to make useful choices about how I live.

I don't need to settle every question about what I am before I can begin understanding what helps.

What I learnt about myself

Perhaps the biggest change wasn't in how I understood ADHD or autism. It was in how I understood myself. I'd spent years believing that I should be consistently productive, capable, motivated and emotionally resilient.

That I should be able to do the things I knew needed doing. And that struggling to do them said something negative about me. But the more closely I examined my experiences, the more apparent it became that my capacity was anything but constant. Sleep mattered. Recovery mattered. Physical and emotional wellbeing mattered. The demands I placed upon myself mattered. My relationships and the quality of my social connections mattered.

And the way I responded to difficult periods could either help me recover or make those periods considerably worse. This brought me back to something I'd already been developing within The Mind Works. My Tower Block Model.

I'd originally developed it as a way of thinking about the different areas supporting our health and wellbeing. But my own experiences encouraged me to explore it in much greater depth. Particularly the relationship between the demands we're living with, the resources we have available and what happens when our capacity becomes overwhelmed.

Because perhaps one of the most important questions isn't simply:

Why can't I do this? But: What is happening in my life, my body, and my mind that makes this so difficult right now? That's where the next part of my Happiness Project took me. And it's what I'll explore in the next article.

Read next: The Tower Block - Understanding Burnout, Capacity and Recovery

Craig Fookes

Clinical Hypnotherapist | Founder of The Mind Works