Getting the Diagnosis - Now What?

22 Aug

Leading up to the feedback session for my ADHD assessment in October 2023, I thought I knew how it would feel. Months of waiting had built up to that moment, and in the weeks before I found myself replaying conversations in my mind, mentally scanning each sign of restlessness or calm, wondering if it would matter. It felt like waiting for an exam result, the days and weeks dragging behind me as I tried to settle my nerves. If you have been in that same place, you might recognise that strange mix of dread and hope. When the psychiatrist finally said yes, my relief felt almost joyous. It was an aha moment so powerful it made everything suddenly make sense.

My own process was fairly straightforward, but research shows that for many adults the journey is not. Systematic reviews describe long waits, mixed experiences of assessment, and a combination of relief and disruption once the verdict is given (Gellini & Marczak, 2024; Lewis, 2016).

The joy didn’t last forever. The days afterward felt different. The adrenaline wore off, and exhaustion set in, as though I had been sprinting and only just stopped. The coping tools I leaned on - overwork, masking, caffeine, and quiet expectations, felt suddenly unstable. The narrative I had carried for decades, that I was lazy or too sensitive, began to unravel. I grieved the energy it had taken just to get here, and all the moments I blamed myself without knowing better.

The year that followed was changed by ADHD medication. I began methylphenidate, and it worked well. I’ll go deeper on that in another piece, but for now, it mattered because it started peeling away the layers I’d carried. Things I once saw as character flaws revealed themselves instead as impacts of ADHD across mind, body, and context. I started to wonder who I might be under the mask I’d worn for decades. And as I started to realise I’d been masking, autistic traits began surfacing more clearly.

When my autism diagnosis came in August 2024, it landed differently. It was delivered in a team assessment, accompanied by an 18 page report detailing my history and how I “performed” in the tests. Relief wasn’t my first reaction. It was disbelief. I thought the clinicians had it wrong. In the follow-up session, I asked outright, and they walked me through everything they had. The evidence. The patterns. The ways I had shown up.

Reading that report was disorienting. I recognised myself in every word - my pauses, my connections, the things I’d always thought I did differently for no reason. Seeing those traits mapped and labeled so clearly pulled the ground from under my sense of self. My self-image had been as a not-autistic person who just struggled more than most. This was like being handed a mirror that reflected me back in a way I never had.

I’d never given much thought to self-image until that moment. Most of my life, I had bent toward what others expected. I saw gaps, not myself. A book called Psycho-Cybernetics helped me name that: Maltz wrote that our behavior follows the picture we hold of ourselves. For me, that picture was blank, drawn by other people’s judgments. The autism report forced me to redraw it. For a moment, I let the word "autistic" dominate my image of myself. I filtered everything I did through it, testing whether this was autistic or not. I almost shrank into the label. But I caught myself. The task now is not to become the word but to hold a truer, broader picture, rich enough to include my challenges and my strengths without reduction.

It is also common for autistic traits to emerge more clearly after ADHD treatment.Research shows that many autistic adults camouflage traits, a behavior that can delay or obscure diagnosis and can contribute to stress and poor mental health (Hull et al., 2019).

When my diagnosis was confirmed, I didn’t just get a report. I received a list of resources, books, organizations, tools for making sense of what came next. I know that many don’t get this. For me, it made a real difference. It didn’t solve everything, but it offered a starting place. I’ve included those resources at the end of this article, in case they, too, help in those early days post diagnosis..

Diagnosis is often cast as a cinematic moment - an ending. For me, it arrived in waves: exhilaration, exhaustion, grief, disorientation, and finally, a slow (and not always linear) integration. I didn’t feel broken when they spoke the words. I felt something change, not in who I am, but how I see myself.

Realising that these not-so-shiny labels, “ADHD” and “autism”, also carry the term "disabled" upended me. It made visible things I hadn’t seen in myself or others. It wasn’t a boundary. It was a shift in perspective. I’m not broken. It’s the world that is set for the "normal", overlooking those who process light differently, who need time to filter sensory worlds, who break when asked to queue for hours in fluorescent hallways. Flipping that frame feels liberating.

Another myth came knocking: superpowers. Oh, the stories. ADHD gives you hyperfocus at will. Autistic people are savants. Just because those strengths can exist doesn’t mean they’re universal or controllable. Blindly expecting them creates pressure, deepens imposter syndrome when reality doesn’t match the myth, and can even lead us to perform our neurodivergence instead of letting it be.

Both diagnoses came with confusion before clarity. They brought language, community, understanding, and a gentler steering of my brain’s momentum. I didn’t become someone new. I became more fully me. And even now, in August 2025, I don’t think I’ve fully integrated everything I’ve learned. Perhaps that’s the point. Diagnosis isn’t a destination. It’s a long unfolding. I’m still in the middle of it. What’s shifted most is how I see myself. I don’t feel I have to measure up to what others appear to be. My sense of identity and self-worth is becoming stronger, more mine.

Not everyone walks away with a yes. A no can feel like the ground slipping beneath you. But that one word, “diagnosis”, is only a map. It helps explain. It doesn’t define worth.

If you are somewhere in this waiting zone, maybe just beginning, maybe a long chapter in, know you’re not alone. The questions, the delays, the relief, the disruption- they’re part of this journey. And being here, reading this, know that many have already walked this path. We are out there to stop you from needing to walk it alone.

For me, it all started in a pub, with a quiet question: Could I be ADHD? That question carried me further than I could have imagined. This article closes the arc of questioning, doubting, and finally taking diagnosis home. The next part turns toward questions of what comes after. What changes, what doesn’t, how to shape a life that finally feels intentional.

If this resonates with you, I’d love to hear it. Perhaps you’re further along, or just at the beginning, or places in between. Sharing our stories is one small way we make the road less lonely.

Follow on substack

Gellini, H., & Marczak, M. (2024). “I Always Knew I Was Different”: Experiences of receiving a diagnosis of autistic spectrum disorder in adulthood — a meta-ethnographic systematic review. Review Journal of Autism and Developmental Disorders.https://doi.org/10.1007/s40489-023-00356-8

Hull, L., Mandy, W., Lai, M. C., Baron-Cohen, S., Allison, C., Smith, P., … Petrides, K. V. (2019). Development and validation of the Camouflaging Autistic Traits Questionnaire (CAT‑Q). Journal of Autism and Developmental Disorders, 49(3), 819–833. https://doi.org/10.1007/s10803-018-3792-6

Lai, M. C., Lombardo, M. V., & Baron‑Cohen, S. (2014). Autism. The Lancet, 383(9920), 896–910. https://doi.org/10.1016/S0140-6736(13)61539-1

Lewis, L. F. (2016). Exploring the experience of self‑diagnosis of autism spectrum disorder in adults. Archives of Psychiatric Nursing, 30(5), 575–580. https://doi.org/10.1016/j.apnu.2016.03.009

NICE. (2018, last updated May 2025). Attention Deficit Hyperactivity Disorder: Diagnosis and management (NG87). https://www.nice.org.uk/guidance/ng87

Kooij, J. J. S., et al. (2019). DIVA-5: Diagnostic Interview for ADHD in Adults, Fifth Edition.DIVA Foundation, The Hague, Netherlands. Available at: https://www.divacenter.eu

Ustun, B., Adler, L. A., Rudin, C., Faraone, S. V., Spencer, T. J., Berglund, P., & Gruber, M. J. (2005). The WHO Adult ADHD Self‑Report Scale (ASRS): A short screening scale for use in the general population. Psychological Medicine, 35(2), 245–256. https://doi.org/10.1017/S0033291704002892