Kirsty Davies-Warner on the vital UK Government reform of the Mental Health Act

Kirsty Davies-Warner, Chief Executive of Mirus, has dedicated much of her career to advocating for peoples’ rights. Now in her late 40s, she recently received a diagnosis of AuDHD, which stands for Autism and ADHD. Kirsty was misdiagnosed with various mental health conditions in her twenties and was sectioned following the birth of her child.

As the new Mental Health Act makes its way through Parliament and is being debated in the Senedd, she’s sharing her story to show why meaningful changes to the legislation are desperately needed.

In my early 20s, after the birth of my first child, I was misdiagnosed with postnatal depression, leading to two further different diagnoses and two instances of being sectioned under the Mental Health Act. It was a dark time. They had me on powerful medications, and it felt like everything was spiralling out of control. I was desperate to feel better, but the medications only made things worse. 

These experiences left me feeling trapped and misunderstood. I remember sitting there, complying, because I felt I had no other choice. Then one day, there was talk about getting social services involved with my child, and it was like a switch clicked on inside, I knew I had to play along, but inside I knew their diagnosis was wrong. Determined to regain control of my life, I stopped taking my prescribed medication and chose to manage my mental health independently, even though it meant withdrawing from the medical mental health system entirely. Sometimes I feel sad when I think about how different my life could have been back then if someone had listened to what I was saying about my experiences. If I had been diagnosed sooner, I would have had the support and knowledge to advocate for myself.

The turning point in my journey came in my early 40s, when my youngest child received an autism diagnosis at two years of age. In researching his condition, I realised that many of his traits were familiar to me but also matched ADHD. I approached my GP asking for an assessment for ADHD but was told that I couldn’t have ADHD as I was ‘too successful in my life’. They suggested that I go away and get some more sleep and come back with written evidence. Following this I sought a private diagnosis with a clinic in London and was diagnosed with combined ADHD.

Sometimes I feel sad when I think about how different my life could have been back then if someone had listened to what I was saying about my experiences. If I had been diagnosed sooner, I would have had the support and knowledge to advocate for myself.

During a routine NHS assessment for ADHD 6 years later, it was suggested that I be referred to the Autism service. I went in thinking it would be a quick ADHD appointment, but instead, they told me that I was showing clear signs of autism and that in fact, this was referenced in my files going back 5 years. I was stunned. Despite having an autistic child and knowing that many people in my family share the same traits, it was the first time a doctor had said this to me.

As I went through the diagnosis process, slowly, things started to make sense. The diagnosis brought a sense of relief – it was like a fog lifting. For years, I thought I was just an anxious, socially awkward, difficult person who didn’t quite fit in. Understanding that I’m autistic has helped me to see that these weren’t personal failings – they were simply part of who I am. The diagnosis helped me to make sense of years of challenges I’d faced in social settings, dealing with sensory overload, and navigating the complexities of human interaction.

The diagnosis also brought a sense of grief though. This information would have made such a difference earlier on in life. It also meant that there were things – traits about me – that my non-stop quest for growth and improvement would never fix. When I thought my issues were character defects there was some hope of overcoming them one day. Coming to terms with the fact that I will probably always find some situations difficult, no matter how much personal development I do, was a bit hard to bear. 

The reception from the people I have told has been varied. Some, who know me well, weren’t surprised at all, but others were completely shocked and questioned the validity of the diagnosis, especially as I have been successful in my career. Part of me still feels scared to tell people, or to write this article. To admit that I have difficulties with relationships and social cues feels embarrassing. I have spent so much of my life trying to fit in that it feels scary now to drop that mask. There have been many instances in my life for example where someone has said something jokingly and I have taken it at face value, or there has been a joke, and I haven’t understood it. The result was that I internalised a lot, feeling that I was gullible and not very clever.

Looking back on my misdiagnosis, and in my research since, I see a pattern that is unfortunately common, especially for women. So many women are misdiagnosed or overlooked because autism doesn’t always present the way people expect it to. I was told I had mental health conditions and although that didn’t feel right to me, in the absence of the knowledge of my condition I couldn’t explain why I was as anxious as I was. It makes me question how many others are out there, struggling like I was, without the right support. It was only while at a conference hearing a presentation from someone with Autism and ADHD who had been incarcerated for many years, and their experience of the system, that I suddenly realised that this had happened to me, too. That is why I am writing this article.

Understanding that I’m autistic has helped me to see that these weren’t personal failings – they were simply part of who I am.

I think lots of people will be shocked to know that someone like me – and many others with autism or a learning disability – has been sectioned and incarcerated in hospital. I didn’t even realise it had happened to me until I saw the list of drugs on the conference presentation and remembered that I was prescribed those, too. I was very lucky that I was able to disengage from the system and build a life for myself, but I also had to face 25 years of managing my condition through sheer force of will and sometimes unhelpful coping mechanisms. Although I have wonderful family and friends, it has often been very exhausting and lonely trying to just be normal. To be like other people.   

While my diagnosis has not drastically changed who I am or my leadership style, it has made me more aware of the importance of creating a supportive and inclusive workspace, especially for neurodiverse people. I have made several adjustments to my work life to accommodate my needs. I now try to work from home two days a week, which helps me focus without the regular interruptions of the office. It’s a small change, but it’s made a huge difference. I’m more productive, less stressed, and I can manage my energy better. It’s about finding what works for you, and not being afraid to ask for it. I have also introduced practical tools, such as AI-driven notetaking and text-to-speech software, to improve efficiency and reduce the strain of administrative tasks. These might seem like small things, but they’ve been game changers for me, freeing my personal energy up for the parts of my role (and my life more generally) that I find more taxing. 

One of the challenges I now face is the need to unmask and show my true self more often. For years I was masking – pretending to be something I wasn’t just to fit in. It’s exhausting and it takes a toll. Now, I’m trying to be more authentic. It’s not easy and it still feels unnatural at times, I know how to be ‘masked me’ much more easily than being myself. But it feels important, not just for me, but for everyone else who might be going through the same thing. If I can be open about my Autism and ADHD,  perhaps it will make it easier for someone else to be open, too.

I don’t want to have to be a poster child for AuDHD, but I do feel an obligation to tell my story so that others don’t have to fight as hard as I did for understanding and support.

Knowing I am autistic has helped me to see things from a different perspective. I know what it’s like to feel misunderstood, to have to navigate a world that doesn’t always make sense. I think this is what has driven my career in the last 25 years. I don’t want to have to be a poster child for AuDHD, but I do feel an obligation to tell my story so that others don’t have to fight as hard as I did for understanding and support.

At present, people with learning disabilities and autism can be sectioned, even if they don’t have a mental health condition. More than 2,000 are held as inpatients on wards that do not offer appropriate care or treatment. It’s heartbreaking to know that there are still people going through what I did for that short time in my 20s – misdiagnosed, misunderstood, and pumped full of drugs that didn’t work. Often the outcomes are poor. The legislation is outdated and must change. I welcome the commitment by the new UK Government to reform the Mental Health Act.

I’ve been thinking a lot about my past recently, not just because of my diagnosis but because of the importance of the new Mental Health Act. I think I have a duty to use my story to highlight the need for strong and meaningful safeguards in place for people with autism and learning disabilities. My story could have ended very differently and if my story can help even one person feel less alone, then it’s worth sharing.

All articles published on the welsh agenda are subject to IWA’s disclaimer. If you want to support our work tackling Wales’ key challenges, consider becoming a member.