Autism & ADHD: A Lifetime of Misunderstanding & the Clarity of a Diagnosis

Autism & ADHD: A Lifetime of Misunderstanding & the Clarity of a Diagnosis

Until now I have never had a formal diagnosis. I have had a hand wavey ‘You seem depressed, try some meds’ from a GP but that was it. A few months ago, I was prescribed medication for panic attacks, and I had become aware in recent years that I probably suffered from anxiety. Other than that, there was no explanation for why I so often melt down, why I’m unable to be the happy, energetic person my friends know me as. So often I feel like nobody knows the real me. I have many different friend groups and they all know a different version of me, even I struggle to work out who I actually am. I have had suggestions from therapists, friends and family as to what may be the cause of my cyclical depression. I have never liked the term depression, it only seems to describe a small part of what I have so often feel, but I have had no other words to explain it. Past trauma, money troubles, ongoing physical ailments, these all seem like plausible explanations for past episodes, but nobody ever seemed to take note when I would say that my symptoms were present before any of that happened.

I first started experiencing panic attacks at 10, soon after I was talked down from a ledge I was debating jumping off. I always struggled in school but kept being told how bright I was, I was just lazy and unwilling to reach my full potential. At primary school, I confided in a friend about how I felt, she made me tell a teacher. I explained how I would act how I thought other people wanted me to act, that I would pretend to be confident, when inside my head was a storm that I was not equipped to deal with, all I could do was hide from it, pretend it wasn’t there. I was told this was normal, everyone feels like this. Once again it was my fault, I just wasn’t trying hard enough. Everyone else made life look so easy, I guess I did too, but the few times I would reach out and explain my struggles I was ignored. Peers thought me to be weird, I was regularly excluded. If everyone felt the same, then why was it so much harder for me to keep up this pretence? Only now have I found the answer, they didn’t all feel the same. Whilst most people have experienced some of the symptoms I have felt in my life, they don’t all feel them to the same degree as me, or on the same frequency. People may put on a brave face for a tough day, but not every day. I now know there is a name for what I was trying to describe to my teacher all those years ago, I was masking.

It all started to happen again this summer, after a tough year through lockdowns, working on minimum wage and barely able to pay my mortgage I finally got the job I’d been wanting for years. It was the last piece of the puzzle; everything was going to be fine now. But it wasn’t. I started becoming very irritable, short fused. Some days were low mood and energy, typical with depression, but largely I would have a lot of anxious energy, I would be doing 10 things at once and never feeling like I was achieving anything. I was making endless plans to see everyone again but when it came to them, I would feel so overwhelmed I would cancel. It seemed like it was easier to have ‘normal’ life struggles, to be in constant battle, than it was to try and live like a ‘normal’ person. The one thing I had ignored in my attempt to get my life on track was me.

I spoke with my GP and described my symptoms and she suggested I go for an ADHD assessment. I knew about ADHD, my cousin had it, but I also knew I wasn’t like him so never thought I might be too. My GP explained how it can present differently in different people and in particular girls. It is massively underdiagnosed in females, for reasons I won’t go into here. I did some research, spoke to friends I knew had a diagnosis and it started to paint a familiar picture. I was finally getting an explanation that made sense to me. But the more I read, the more videos I watched of people talking about their experiences, the more I realised this wasn’t the whole picture, there were still some puzzle pieces missing. I had multiple breakdowns, at work and at home, my doctor advised I take some time off work. I had only been there 3 months. I felt like a failure. Why was it all so much harder for me than everyone else? I watched so many videos of people referring to their ADHD as a superpower, how once they understood it, they knew how to harness it and their lives massively improved. Why could I not do the same? I looked through all the information a friend had sent me when I was first referred, there was one video I hadn’t watched, it didn’t seem relevant. I was on ADHD and autism. I couldn’t have gotten to my 30s and not known I was autistic, so I hadn’t bothered watching it, until then. Suddenly another puzzle piece fell into place. I went down an internet rabbit hole, much more intensely than when I had read up on ADHD. Each video I watched gave me another piece to the puzzle in my head. I guess I hadn’t known much about autism until then. Especially how it presents in females. Some people I spoke to were very supportive, others very dismissive. How could someone like me be autistic? My mother was certain she would have known. Many friends only know the extrovert in me, that mask doesn’t look autistic. None of my masks do.

For years I have thought I have seasonal effective disorder (SAD), I usually have a dip in mood around October-December, sometimes for a week or two, sometimes for months. It’s not always that time of year I am triggered, but it is very common. It is in that period that I have quit 3 jobs, a PHD, a PGCE and ended two long term relationships. I have moved cities with nowhere to live. I make rash decisions, sometimes I look back and am glad of where I have ended up as a result, sometimes I just look back on that time of year in shame. So, SAD seemed to fit. With the change of seasons, I would get this ‘depression’ that was different to everyone else’s, but I had accepted this was just my version, I always was a bit different after all. When you’re depressed all the advice tells you to try and do a bit more each day, try and make yourself go out. Except I’m rarely low energy at first, manically doing far too much, but this didn’t stop me trying to do more, determined it might help. Everyone I spoke to agreed I was depressed, it’s all any doctor had every told me, so why should I think anything else? When this happens the depression always comes eventually. I run faster and faster from it as I feel it approaching. Desperately trying to fill my time with distractions to stop that familiar cloud descending. When I burn out, become overwhelmed with the non-stop life I have made for myself, that’s when it hits. That stereotypical depression, unable to get out of bed. It never occurred to me that as SAD is to do with light cycles, changes in mood due to less daylight hours, it should ease as the days get longer, February to March. This isn’t my general experience. Come January, or often even earlier, the cloud lifts and life seem more manageable. I‘ve realised I can’t handle the stress of the festive period, the expectation to always be socialising, the need to buy presents for an ever growing family, trying to keep track of which friends gave me a gift last year and I should therefore buy one for this year, the flashing lights everywhere you look. I have often said I find Christmas triggering, one thing that astounds me when I have said this in the past is people’s reaction to this information. In my experience, when someone with mental health issues confides a trigger to a friend the response is usually comfort, and an attempt to stop them from experiencing this trigger and perhaps advice on how to better manage when it is unavoidable. When that trigger is Christmas for some reason people take this as a joke, they laugh and play Christmas songs, try to put up decorations around you and invite you to Christmas fairs and events. I have never understood this, I still don’t.

When I look back I wonder how I was not diagnosed earlier, how it hadn’t been picked up by teachers, friends, family or even myself. At school I was the naughty one, the tomboy, but I also had selective mutism. My reports repeatedly comment on how I would not say a word in many lessons, not even responding to my name. I’ve worn ear plugs to gigs for years and never thought twice about it. I take sunglasses everywhere, even at night, sometimes a bright light in a dark room or street can be so blinding it makes me feel sick, gives me a headache and in extreme cases can make me just want to go home. The slightest bit of light in my bedroom and I won’t sleep. I often struggle to hear people, I assumed I just had bad hearing. I was confused when I had my hearing tested at one of my first jobs and told it was one of the most sensitive she had seen. I’ve since realised I hear every little noise around me, which is why I struggle to make out what is being said to me, especially in a loud room or a conversation with multiple people.  My communication issues are most obvious when in a new situation. At university I didn’t make friends with people on my course, on my masters I once said I would go for a drink after work and my whole group looked stunned, one of them even said ‘Is she actually going to socalise with us?’. Until this point, I hadn’t realised they thought me antisocial. I felt so on edge that night, like I was being watched and judged, so I never went out with them again; and I have never been out on work drinks in my whole working life. When my mum organises a big meal, a get together with family and friends, I am always the first one to get up and clear the table. People often comment on how kind I am, doing all the washing up whist everyone has coffee and small talk. I hate small talk, by the end of a big meal I am so worn out all I want is to be alone. I know if I go upstairs and lie down eyebrows will be raised, questions will be asked. It’s much easier to be the star daughter who doesn’t let my mother do any clearing up. Another sensory issue I have is telling the difference between hunger and nausea; as a result, I often forget to eat, I inadvertently lost 10kg at the beginning of this year. People generally think you should compliment weight loss, I was endlessly asked how I lost weight in lockdown, told how jealous they were of me, all as I tried to hide the bones poking out, the reminder that I can’t look after myself in the most basic of ways, I can’t even remember to feed myself.

Since first speaking to my GP I have now been diagnosed with ADHD and autism. I am still waiting to start receiving treatment but even this diagnosis alone has validated how I have felt for so long, it has given me the confidence to speak up about how I am feeling without being ashamed. I now understand that trying to do more is often not the best approach, if I feel tired and run down it’s probably not depression, it’s my body telling me I need to rest. If I ignore it then the depression will then likely rear its ugly head eventually. I have even managed to be open with my mother and get her to see that this is real, this is something I have always, and will always, have. Something I need to learn to live with and not hide from, not be ashamed of. I have had honest conversations at work about the difficulties I have on a daily basis, and how they can support me. But most of all I understand myself in a way I never have. I know it’s a long road ahead but at least I finally feel like I am walking down the right path rather than being blindfolded and running through the woods.

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