Lessons from Space Mountain

I didn't realise it when I pressed the button to launch this website a year ago today, but my first post happened to coincide with International Day of Acceptance.

Celebrated on 20th January every year since 2010, it's focused on promoting "social acceptance of people with disabilities and to recognise their contributions and rights". In hindsight I couldn't have picked a better day to start writing about my own journey of discovery.

When I launched, I genuinely thought it wouldn't take long to make sense of the chaos. I just needed to get a diagnosis and that would help me understand why I'd always felt like there was something about me that I couldn't quite grasp. I've thought quite a lot about how to mark the first anniversary of writing about being an AuDHDer and it seems simple (now that I've changed my mind 37 times).

So here's four things I wish I'd known when I started writing in early 2024. Because over the past 12 months I've had conversations that have left me feeling everything from overwhelmed to inspired, excited to frightened, and a thousand shades of emotions in between. The kind of emotional rollercoaster that makes Space Mountain feel like a gentle stroll in the park. My hope is that anyone who is where I was a year ago will find something here that resonates or gives them comfort because it often feels like someone forgot to hit the stop button on Space Mountain and I continue to keep going around.

One AuDHDer ≠ all AuDHDers

Every story and journey is different. Just because something works for one person doesn't mean it works for everyone. We're all unique. Your experience will not be the same as my experience. Rebecca Dempsey's article on the Female Autism Phenotype is a great example of this, with this quote from a 2016 study summing it up:

“Our data suggest that some of the challenges of being a female with ASC do not come directly from the individual’s autistic difficulties; but rather reflect how these difficulties play out within a culture that has specific expectations for females”. 

For me personally, I was surprised when it came to ADHD medication how much conflicting advice I received. The pendulum swung between those saying it would make me no longer feel like myself and those telling me it would be life changing. I'm glad I started to take Elvanse to find out how it affected me... because ultimately it's about what works for me.

Another brick in the wall

This past year has been a struggle. But I say that fully conscious that I have a huge degree of privilege - I'm white, straight, male and able-bodied. I also have a job that comes with private medical insurance. I can't imagine how challenging this journey is for those people out there who don't have the same privileges I do.

The article I received the widest opinions on was this one, an open letter to the health minister. Could I have used less destructive language? Yes. But I don't regret it. I hold no official role in this space. That doesn't mean I can't be angry at a broken society. I've heard from so many people who are as frustrated as I am at a system that were it able to get through its own waiting list would probably get a diagnosis of gaslighting.

Depending on what day of the week it is, you're told the waiting list for ADHD diagnosis is more than eight years in length. Or maybe it's six or seven years. You're also told that there's no money for an adult service. Or depending if you live in the right place at the right time, there might be a small pocket of money. There is also no strategy to change things... or maybe there is, but the Health department won't provide information about it.

If you're in the ADHD infinity pool, I'm sorry you're going through this. If you're reading this and want to help, sign up to our newsletter on this page. We will be sending out a small number of messages throughout the year on how you can be involved in change.

Don't fear the (overthinking) reaper

The second I launched this site right up until the moment I got an official ADHD diagnosis I felt like a fraud. I constantly asked myself the question – what if I'm not? What if I have to, at some point, write an article telling everyone that I'm part of the predominant neurotype and I'm closing this site down?

In the 12 months since I've heard lots of people vocalise the same thing. Don't beat yourself up. This can be a long journey (see above). There are plenty of people ready to dismiss your experiences, don't help them by being their loudest supporter.

There is comfort in community

Every interview I've written up has brought its own moment where I've felt seen. Luke Beardon, without even knowing it, helped me realise that gaslighting is gaslighting. He also helped me really think about the language I use. After spending time with Emer Maguire, I felt like I should have been paying the phenomenally talented comedian for therapy. My point is not that you should all go out and start interviewing interesting people (though it is cathartic).

Meeting other people who have been through similar experiences is not going to replace a diagnosis or medication. But I can say that feeling like you're not the only person in the world who feels the way you do is a powerful drug alternative. If you need to talk to someone there's great groups out there like Spark, or feel free to drop me a message.

Thank you

Thank you to everyone who has read even just one article here in the past year. Whether you're going through your own journey or you're wanting to understand what a friend, colleague, partner or relative is going through, I hope something you've read has helped.

The UN's four core components on the right to health are availability, accessibility, acceptability and quality. It's pretty clear, especially when it comes to ADHD in Northern Ireland, that we aren't meeting those standards.

To those who have contributed to the site with your own stories, a massive thank you for being part of something and making a difference. We will continue to shine a spotlight on a broken system until the day we can confidently say we finally do meet those UN standards on health.