Many undiagnosed autistic people are misdiagnosed with an array of mental health disorders before the healthcare professionals arrive at the correct destination – a town called ASD, Autism, Asperger’s, or whichever term you are given when you are diagnosed. A common misdiagnosis is borderline personality disorder. There are a whole host of reasons why autism is misdiagnosed as borderline, which you can read about here, but I want to focus on the emotional reasons. I understand why a person might be misdiagnosed with an emotional disorder, particularly when General Practitioners can’t possibly be schooled enough on every single disorder, disease, condition etc. While I was being assessed for autism, I convinced myself I didn’t have Asperger’s at all and that in fact I was suffering with BPD because I felt scarily out of control of my emotions. Before I was diagnosed I did very little research about autism because I was so frightened of latching onto a condition that wasn’t mine to latch onto, so my knowledge extended as far as the work I’d done with autistic young adults, most of whom were men, and TV shows like Atypical, The Big Bang Theory, and Rain Man. I knew the basics like change being stressful, sensitivity to touch, taste, smell, sound, and sight, difficulties with socialising, intense interests. All the surface stuff you see in the TV programs and films. I had no idea the extent of what I would learn.
As many of us are, I am entirely driven by my emotions. I never wondered about my emotional state through the lens of Asperger’s to begin with, but the more I experience of life with self-awareness and sobriety the more I watch myself being swept off in debilitating outbursts of rage, happiness, sadness, longing, excitement, nostalgia. All these emotions hurt. They hurt my heart and my tummy, my head and my chest. Even the good ones. And they come with such intensities of each over such a small space of time that it can be a jarring experience for both me and those close to me, particularly during a specific week of the month (girlies you know what I’m talking about). One moment I am squealing with excitement, jumping up and down at a piece of news, the next I am so burnt out from the outburst I am low and fatigued. I do exciting things, but they have to be highly planned in terms of knowing exactly what will happen, planning with the assumption I will be distressed, and knowing my limits. Sometimes it’s hard to enjoy exciting things because I am so overwhelmed by the feeling, and it is always marred with anxiety crawling slowly up my throat.
It was my birthday this week and with general plans and coincidences I ended up going away three times in one week. Each trip was to do something I have dreamed of for years. One was seeing Hamilton at the West End in London. One DJing at an event in Bristol where I played music written and produced by myself. The last was my lifelong dream of hugging cows. My biggest special interest is cows and for my birthday I asked Mum to take me to hug some. The closest place a person can hug a cow is a four-hour drive away, so we stayed a couple nights. I was so joyful to be doing each of these that I cried with overwhelming excitement regularly in the month leading up to my birthday. However, they were all very stressful. It’s such a contradiction. Fun things in life are always tinged with this deep angst.
The happiness and contentment I had when I was laid down with cows for two hours in the rain was all-consuming. A moment of pure silence and peace. I spent the rest of the day catatonic and my mother had to drive the entire four hours home the next day because I was awake but asleep, exhausted by the ecstasy, and in no way safe to drive. (Absolutely, indubitably, resolutely, unimaginably, WORTH IT!)
Having to plan every tiny part of life is bone-achingly tedious, for me and my poor, patient parents, however, I love the things I love with such a burning passion that I get a lot of joy out of rather simple things. Like my heart almost exploding with a loud pop when I drive past a field of cows. A drum and bass song can make me feel as though I’m soaring through the air, pure ecstasy pushing me above the clouds. Don’t get me started on the trajectory of my emotions when a horror film I’ve been awaiting for years finally appears (The Human Centipede 3, I’m looking at you).
Emotions can hit so hard they knock me off my feet. Alexithymia is a term used to describe difficulty with expressing and identifying emotions. There is a stereotype that autistic people have no empathy. Although this may be true in some cases, alexithymia is actually what causes this, not autism itself, and up to half of people with autism suffer with alexithymia. Sometimes I might seem unempathetic, but I am very sensitive to the feelings of others if I can physically see their pain or they explain it exactly to me. I can’t always identify what they’re feeling but if I know someone is upset, I feel as though it’s happening to me and my heart breaks for the person. Again, it is a physical pain that engulfs me. Then comes the frustrating next part. I don’t know how to act accordingly. I don’t know what to do to help. I don’t know how to process my own emotion to show them that I am sad for them. I can only speak for myself, but that is what’s going on behind the scenes when I seem like I have no empathy. Often, unless someone sits me down and says explicitly, ‘your sister is upset because her dog died’ or ‘your friend is angry because someone hit her car’, I won’t realise that I need to change my actions/words. There’s a whole host of things going on there. Once I know my sister is upset because her dog died, then I might cry about it and want to do whatever I can to make things better. Again, I won’t know what that is so I might badger them, which probably annoys the hell out of them. That's usually my cue to exit.
In that short debrief with the psychologists after they told me I had Asperger’s, I was given a tome's worth of information. I was so stricken by the news that I was autistic, all I heard was the confirmation of my condition and a loud rushing sound as my thoughts whizzed by with nauseating speed. In forty minutes, how could they have begun to convey all the ways my life is affected by this condition? They couldn’t, and I wouldn’t have been able to process it anyway. They don't tell you in the guidelines emotions are such a big part of this.
See you next week for more information dumps about everything I wish I knew about COMMUNICATION.
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