‘I would not be alive today if I hadn’t been diagnosed as autistic at age 27. Since then I have a new lease on life’
Danni Burke endured years of self-harm and a misdiagnosis of unstable personality disorder before learning she was autistic. She tells Emily Hourican about life before and after her diagnosis
For Danni Burke, being diagnosed as autistic at the age of 27 “was strange, but also amazing and powerful”. When autism was first put forward as a possible diagnosis, Danni didn’t relate to it. She says: “At the time I didn’t know a whole lot about autism. Like a lot of people, I had misconceptions. I didn’t look into it for a few months, but then when I did, everything began to make sense.
“I was diagnosed as ‘classic autism, level two’. I knew little about these terms at the time, and was concerned about what this meant for my future prospects. I have since learnt that these terms are just an outsider’s observation of how well I function and don’t quite explain the autistic experience.”
When she says “everything began to make sense”, Danni means the ways in which she had felt “different” for many years by then. Now 31, she adds: “I always knew I was different. In primary school I found that quite easy. There were few expectations on me as a kid — when you’re very young, you can get away with having no filter, with making mistakes. I really enjoyed primary school; I’m dyslexic and have difficulties reading, so they put me in a class where I got help with reading, but nothing more than that.”
However, things “definitely got harder when I went to secondary school. People are becoming teenagers, relationships change, people aren’t as forgiving when you’re a young adult, there’s more responsibility on you. I did love secondary school as well, and I have really good memories. But I started to struggle a lot more mentally. I had a lot of miscommunications with people. When
I got to 15, I started self-harming and it progressively got worse from there.”
For a long time, no one knew. “It was all secret. I didn’t tell anyone I was having any difficulties with anything. I would have said little bits here and there to friends, but not much.
It got pretty bad,” she says. “But I finished school, and still nobody knew anything.”
After school, Danni left home in Galway and started in UCD, studying social science. “I was 19 and I became so overwhelmed.” She mentions lecture theatre L — a vast, noisy, chaotic lecture hall familiar to anyone who has studied arts in UCD. “I had a lot of classes in there. Oh my God; I hated that place. I was really fortunate that I had a good few friends who came to college at the same time as me. But I definitely struggled and there was almost no support. I did go to see a student adviser who got me extensions in my assignments, but that was it. I sat some of my exams, then I overdosed that weekend, and ended up in St Vincent’s hospital. Even then, I didn’t tell anybody what was happening. I came home to Galway and told my parents I hadn’t sat my exams.”
Danni left college and began working as a healthcare assistant in a local hospital, “for about a year. I really enjoyed that job, but I still was not very mentally well at that time.” She was still self-harming, and “one day I cut really deeply and had to go to A&E for surgery. I had left a mess at home. I’d hit tendons and veins and hadn’t been able to clean it up. So that’s how my parents found out.”
Soon afterwards, Danni “took another overdose. I just couldn’t cope. It was so hard. I felt like I was a flawed human being, I couldn’t understand why I couldn’t be an adult, why I couldn’t function. I hated myself so much. I definitely did not want to be here.”
Following the overdose, Danni spent some months in a psychiatric unit. “That was the very beginning of that journey. It took a long time. I went from hospital to hospital, trying different places, but I also met so many amazing people and staff along the way; a lot of people who really cared.”
Initially she was misdiagnosed with emotionally unstable personality disorder (what used to be known as borderline personality disorder). “I was misdiagnosed with that for 10 years — it’s a really common misdiagnosis, particularly for autistic women. There are very few males who ever receive that diagnosis, it’s very gender based. But men get missed as well — the literature on autism doesn’t reflect the whole experience; there are a lot of misconceptions out there. No two autistic people are the same, we’re all totally different, like all humans, although we may have some similarities.”
Confusion around a diagnosis cost her dear, in terms of time and support. “I did lose 10 years of my life,” she says, “I’m just glad I made it out the other end, because many people don’t. We have really significantly high suicide rates in this country.” The suicide rates for autistic women are particularly high — around twice what they are for autistic men.
Finally getting the correct diagnosis meant many things for Danni, some of them conflicting. “I felt a lot of anger and sadness that I had been missed. I nearly died so many times. I have made massive and serious attempts on my life over the years.
“My whole body is covered in scars, I’m lucky not to have serious long-term damage, and I shouldn’t have had to go through those things. But then, the positive side, I was able to see, ‘ok, all of these things make sense’. And it wasn’t my fault. I did the best I could. The diagnosis has meant trying to be more compassionate to myself. Finding more appropriate coping strategies. Living my life as myself, allowing myself to be myself. That’s been really amazing. My life has changed so much since then.”
Danni also has a diagnosis of ADHD, and sensory processing disorder. She says: “Generally I use the term ‘neurodivergent’ because it’s hard to tell where autism ends, and ADHD and sensory processing disorder begins — these things overlap.” A large part of Danni’s journey was “connecting with autistic people. That was a massive part of the transformation, just getting the diagnosis wouldn’t have had the same impact, that peer support has massive value; it’s been a huge part of the change in my life.”
Danni, who prefers to be called autistic, rather than ‘with autism’, currently works with the HSE mental health services in Galway, and is involved with initiatives to change the way society functions, in ways that will benefit both autistic people and society at large.
She says: “In really small ways, things are getting better. People have a bit more awareness that autistic people exist. But in terms of creating more accessible workplaces, not enough people are invested in it although there are individuals making changes.
We need more autistic people involved in designing support services, buildings, public spaces, all of these things. Because these things and places don’t work for most people — autistic people are just the canaries in the coal mine.”
Practically speaking this means things like physical design, not having fluorescent lighting, having calming, relaxing spaces, and outdoor spaces that can be easily accessed — but also the culture of how people are treated. “I find it really stressful to go to an office and wait around to be seen, in an area with a lot of noise, and different things going on,” Danni says. “What about the option to wait outside, and get a text or call when the other person is ready?”
Autistic people, she points out, “are teachers, lecturers, doctors, surgeons, nurses, social workers, psychologists, artists, solicitors, gardaí, mechanics, architects and this list goes on. Unfortunately, many people don’t get these opportunities and many that do have jobs, struggle without basic accommodations. Thankfully my employers have been helpful and I am able to be myself and be accepted and treated equally at work.”
Covid, she points out, “is the perfect opportunity to change things. This is a chance to find different ways of working together. It’s great to see that people are finding different ways to connect, different ways to engage; I’d love to see proper changes where we could come together and look at better ways forward. Covid has upended our lives so much — there are a lot of downsides, but some benefits.”
Recently, Danni spoke as part of a webinar focusing on autistic women and girls put together by the Saint John of God Research Foundation Learning Exchange Series, something that she found very positive. “Normally autistic people are not given space to advocate for themselves. Normally when these things are designed it’s just the professionals speaking, so it was really good to have that opportunity.”
For all the undoubted frustration of knowing that “my life would have been so different if I’d been identified younger,” Danni can see much that is positive. The purpose of the webinar was to provide a forum which connects research to real life through the experiences of individuals and clinicians. “I definitely would not still be alive had I not realised I was autistic. Now, my life is like everybody’s, in that we’re all having a difficult time with Covid, but things are going in a good direction and I’m grateful to be here. Not that everything’s rosy but I am viewing things differently and I have a new lease on life.”
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