In this blog for Neurodiversity Celebration Week 2024, Jena, a Peer Supporter at CNTW shares her journey, from being diagnosed with ADHD as a child to learning about and embracing her autism diagnosis at 33.
I’ve never felt like I fitted in. Sometimes I still don’t, but it’s much better than it used to be. A bit weird, strange; an alien in a neurotypical world.
I was first diagnosed with ADHD when I was very young. My mum took me to a private psychiatrist, as even then the waiting lists were very long. ADHD was all I’d ever known – bullied for taking tablets, family arguing about what’s best.
I decided to stop taking my medication when I was 13 years old, but it got me through primary school. Secondary school was hard. There was stigma around medication, and I didn’t want it.
Today, I still choose to manage my symptoms without medication, though I wonder almost daily if I’m making the right decision. I have friends and colleagues who take medication, and it has helped them enormously, but it is such a personal decision.
I saw a psychiatrist in my late 20s as I was really struggling with my mood. I’d heard of emotional dysregulation, and I didn’t know if this is what I was experiencing or if it was something else. I felt highs followed by lows and back to feeling hyped up again, often all in the same day. Changes so rapid, it was exhausting. Often, it still is.
Apparently the ADHD diagnosis wasn’t on my medical record, and I felt like my whole identity was being challenged. The psychiatrist also wondered if what I was experiencing could be linked to having ADHD, so he asked if I wanted another assessment. Around a year later I was diagnosed with ADHD, again!
But the assessor felt I might also be autistic and asked if I’d like to be assessed for that too. I figured, why not? I’d be lying if I said I didn’t already have my suspicions.
This was a longer waiting time, 3 and a half years, and a wait that I really struggled with. I spent some time learning about autism. I was also working with autistic children and young people at the time, and had supported autistic adults in the past. Some days I felt like I must be autistic, it all seemed to click. But other days I felt like I couldn’t possibly be. The not knowing was awful. My mental health deteriorated, and I was really struggling.
I was eventually diagnosed with autism, aged 33. I felt relieved. I was surprised to find that my mum was upset. She was judging herself for not noticing earlier. But we’re still learning about autism in women and girls, and it’s really common for us to be diagnosed later in life. My dad doesn’t want to hear about it, he doesn’t understand, and it’s taken me a while to make peace with that. We can’t always change how others feel.
It’s been around a year and a half since I found out that I’m autistic. It’s challenged my identity all over again. Things that I had attributed to having ADHD might instead be autism, though there can be some crossover too. I’m still learning how to manage my emotions. I completed a course through a charity in Sunderland called Autism in Mind (AIM). I found that incredibly helpful, even though I already knew quite a lot about autism from my professional studies.
I’m hoping to get some coaching to help me manage my time better at work. I’m getting better at speaking to others about my sensory needs, though I still don’t feel entirely comfortable asking others to make accommodations, such as not spraying aerosols in the staff room when I’m trying to eat my lunch. (Strong smells can make my whole body ache, cause sharp pain, or set my teeth on edge!)
Being given a diagnosis isn’t a magic wand. My symptoms haven’t disappeared, but learning how to manage them and speaking to others who experience similar challenges has been a great help. And having these diagnoses has helped to validate my experiences. I now find it easier to be kind to myself when things aren’t going well. Receiving an autism diagnosis felt like I finally had permission to be myself.
I’ve also been learning a lot about how these two diagnoses, autism and ADHD, can interact. Some days I feel like a walking contradiction. I thrive on routine and structure, but crave novelty and become bored by sameness. I can be impulsive and make impromptu decisions, but feel overwhelmed when things change at the last minute. I can struggle to concentrate and organise myself, but have developed almost obsessive organisational skills in order to keep everything ‘just right’. Of course, everyone is different, and no two people with autism and/or ADHD are the same.
There’s a term floating around the internet, AuDHD, which refers to a diagnosis of autism alongside ADHD. It’s not an official term, but I think I quite like it, and it’s less of a mouthful too!
But the internet feels like a double-edged sword at the moment. I’m so grateful that content creators are raising awareness and helping people to recognise where they may need some extra support.
But I’m also troubled by the idea that ADHD and autism are currently somehow ‘in fashion’, or some kind of fad. This portrayal in the media is massively damaging not only to those who already identify as having ADHD or being autistic, but can stop people from seeking help when they need it.
I hope we see a shift in this mindset over the coming years, so that everyone can feel valid in their experience, and feel safe to explore assessment and diagnosis if they feel they need it. For some people, the research and awareness is enough, they don’t need to seek a formal diagnosis; and that’s absolutely fine too!
For me, moving forwards, I’m trying to focus on myself and move away from the research. I think the last few years have been quite overwhelming and a great deal of my free time has been consumed by learning about autism. Yes, I am autistic, and I have ADHD, but there’s a whole lot more to me than that, and it’s time to focus on just being me.