The Wrong Instruction Manual: Making Sense of Late-Diagnosed Autism

I spent years trying to understand myself using labels that never quite fit — like being handed the wrong instruction manual and being told the fault was in how I was reading it. Over time, I started blaming myself for that. A lot.

Before my autism diagnosis, life felt confusing in ways I couldn’t articulate.

From the outside, I was seen as capable, independent, and coping well — often managing not just my own life, but, as a young carer, the needs of others as well. 

Underneath the person they saw, there was internal chaos I couldn’t put into words. I was constantly trying to make sense of a story about myself that didn’t feel true. 

I saw many people recover and thrive after their medication trial or group therapy, and I was…stuck. 

So each time an inpatient admission rolled around or a new medication was suggested, I found myself staring at that same instruction manual, cursing myself for not being able to “read it” or “work it out”, because I saw myself as the problem. 

Having autism named as part of how my brain works didn’t fix everything, but it did something important: it stopped me seeing myself as the problem.

It gave me language — and permission — to stop fighting myself.

Authority carries weight in healthcare, and when professionals give you a label(s) it’s hard not to believe them. After all, they have the piece of paper and years of specialised training. I placed more faith in that authority than in my own lived experience and distress.

Even when parts of the explanations didn’t match what I was experiencing, I assumed the problem must be me. I tried to contort myself to fit a diagnosis that, somewhere in the back of my mind, I knew didn’t fully explain what was going on.

Over more than ten years I was given multiple labels. I engaged in therapy including approaches such as Acceptance and Commitment Therapy (ACT) and Dialectical Behaviour Therapy (DBT) – and was prescribed a number of medications that ultimately caused lasting medical complications. At times the treatments being considered and recommended became increasingly intensive, such as Electroconvulsive Therapy (ECT), which reflected how seriously clinicians believed something was wrong and, if pursued, would have ultimately targeted the wrong problem.

During those same ten years I was also studying, graduating, working and caring for others. From the outside, I looked capable and successful. People saw someone functioning, achieving and coping.

Inside, it felt very different. The gap between what others saw and what I experienced was volatile. Each time treatment didn’t help, I returned to that same instruction manual, convinced I must be reading it wrong. The more I tried to make the explanation fit, the more I blamed myself when it didn’t.

Ten years is a long time to blame yourself when treatment isn’t helping you feel “okay”.

Over time the gap between the explanations I had been given and my lived experience became harder to ignore. Treatments sometimes addressed symptoms, but they never fully explained the pattern of my life — the burnout, the confusion, and the sense that I was constantly trying to translate myself into a language that didn’t quite work.

By my mid-twenties I had spent more than a decade in therapy and treatment. I had engaged seriously with the work: therapy, medication, learning coping strategies, trying to do recovery “properly”. But something still didn’t make sense.

When the structure of university disappeared and the pressures of work increased, everything began to unravel. The coping strategies that had carried me through structured environments stopped holding in the same way. What followed was burnout that I couldn’t explain through the frameworks I had been given.

As the burnout became more visible to others, more and more people began assuming I already had a diagnosis of ADHD.

That was the point where the question changed. It no longer felt like there was something left to treat — it felt like there was something left to understand.

Receiving an autism diagnosis at 25 didn’t suddenly fix everything. It didn’t undo the years of confusion or the consequences of treatment that hadn’t fit, or the frustration of still centring recovery and survival nearly twelve months later — still rebuilding, still dealing with the physical impacts that came from years of misdiagnosis, and still learning what helps regulate my nervous system, while also navigating the fatigue and pain that sometimes make even those supports hard to access.

Most importantly, it changed how I spoke to myself about my past.

For the first time, I did something I once thought was taboo — I forgave myself.

I stopped endlessly ruminating on past interactions and assuming every communication breakdown was my fault. Communication is a two-way process, and my diagnosis allowed me to approach those memories with more compassion.

Experiences that once felt like personal failures began to make sense in a different way. The burnout, the communication breakdowns, and the sense of constantly trying to translate myself into systems that didn’t quite understand me were no longer proof that I was “doing recovery wrong”.

Instead, they were signs that the explanation I had been given for so long had never fully captured the pattern of my life. 

Misdiagnosis doesn’t just mean getting the wrong label. It can mean spending years trying to live inside an explanation that doesn’t quite fit — sometimes with real health consequences.

From that standpoint, I’m still learning — often surprised by small things I never would have connected to helping with my sensory challenges, like finding that a motorcycle or ice bath can actually help me regulate by noticing how my body moves and feels in space. 

Those are some examples (from my own experience) of the kinds of translation tools that help when I find myself staring at the instructions again. 

Written by Luke.