Being Diagnosed with ASD (at 19 years old)

I have never quite been what someone would picture when they hear the word ‘autism’ – well, I believe I’m not. I’m bubbly, outgoing, I love being the center of attention and making people laugh. I’m spontaneous, I take risks, I put myself out there, and I make a lot of eye contact. So I see why it would come as a massive shock to the people in my life that I am on the spectrum – it sure shocked me, too.

Take a moment to consider that everything you think you know about Autism Spectrum Disorder may be incorrect – or, at the very least, a very specific version of how it can look. But, as Dr. Stephen Shore (Professor of special education at Adelphi University – and autistic himself) has said; “If you’ve met one person with autism, you’ve met one person with autism.” Autism looks different in everyone, but there are sets of experiences that are relatively universal among those on the spectrum. I have spent hundreds of hours researching these and regret to inform you that they will not fit in this blog post, but I hope to go into detail on future posts. I would, however, like to tell you about how this came to be.

This started about 7 months ago, with a comment left on a Youtube video in which I talked about my weight problems and disordered eating. It was a very kind and sympathetic comment offering gentle advice and encouragement. Nothing out of the ordinary, aside from a link accompanied by the words “Also, check out this video in case it applies to your situation.” I was expecting to find a resource related to disordered eating or maybe even anxiety. But it was instead a link to a video titled Tony Attwood – Aspergers in Girls (Asperger Syndrome).

This was a very confusing moment for me. Of all the things that could be wrong with me that I’d ever considered, autism was not on that list. Why would it be? Look at my above list and you will understand that this was an impossible suggestion – for autistic people talked weird and acted weird. They looked like Sam from Atypical or Sheldon from Big Bang Theory – strange. I was a very ‘normal’ person, aside from my quirks.

By the end of the half hour video, I was amidst an identity crisis. How had this strange man told my life story without ever having met me? How had I gone 18 years of my life with such huge misconceptions on what autism had to look like? But most importantly: Was I autistic?!

This led to what would end up totaling well over a hundred hours of research into autism – more specifically; autism in women. I learned about masking/social mimicry, extroversion in autistic people, sensory difficulties, meltdowns, shutdowns, burnout – and with every single blog post, video and book I consumed, I watched as my entire life clicked into place. I suddenly had an answer to all of the questions I’d been asking myself since I was a child: Why am I weird? Why can’t I be normal? Why don’t other people like me? Why can’t I do things that seem so easy to other people? Why does just going outside exhaust me so much? Am I broken? Am I a freak? Am I worthless?

I realised that I’d gone through my entire childhood thinking I was a broken or faulty neurotypical person, when I was in fact a determined neurodiverse person doing my dang best. But the relief and excitement over this life-changing revelation was quickly cut short by one more question that I couldn’t seem to find the answer for: Do I seek a diagnosis?

I’ve always had to damn near fight doctors and mental health professionals to give me the time of day and believe me. Through repeated invalidation, insult and rejection, I had found myself with a few diagnoses that were kinda right, access to therapy that did not help and some antidepressants. I knew I’d have to fight again and just the thought hurt. Because I knew that it hurt to call and make an appointment. It hurt to leave my house and get to wherever I needed to be. It hurt to sit in front of a stranger and talk about my problems. And it was agonising to watch them roll their eyes and brush me off, telling me there was nothing wrong with me as they rush me out. It was a risk I wasn’t willing to take.

So I took all of this information and knowledge I’d gathered and put it in a box, like cleaning away the belongings of a beloved pet who had passed away. Longing to keep it near, but knowing it would only cause prolonged distress. I thought that maybe one day I’d seek a diagnosis, but for the time I accepted that a huge majority of the population would never ever believe me. That hurt too.

Things got bad, so I went to see a psychologist. I told him about my weeks of continuously anxiety that would regularly escalate into panic attacks. I told him that my room was a mess, I felt unsocial, and I got into deep detail about a recent falling out with someone that seriously destroyed me. I mentioned briefly that I had been diagnosed with BPD at 17 and he asked what else I’d been diagnosed with. So I went down the list of things I’d either been diagnosed with or were just suggested to me; Social and Generalised Anxiety Disorders, depression, OCD, depersonalisation/derealisation disorder, several eating disorders, body dysmorphia disorder.

When I finished this list he said, “What about ASD?” I felt chills run down my entire body as my heart seemed to stop. I was sure I hadn’t heard him properly, but when he confirmed this I instantly dissolved into tears. It took me a moment to be able to speak again, but once I did, I explained my suspicions and research. He suggested that it was a good idea to look into it. So we did. And just as I suspected, I am autistic.

I’ve been living in the past for a few days, retelling myself the story of my life in a way that for the first time makes sense. I have a lot of anger towards the world, for letting me suffer or even actively contributing to my suffering because I was an easy target. I’m angry that they let me slip through the cracks. That I was missed, judged and hated for my entire childhood. But as well as that anger I feel a strange sense of calm and self-compassion, because being autistic means that I’m not so many things. I’m not crazy, I’m not a freak, I’m not lazy, I’m not ‘psycho’, I’m not cruel, I’m not evil, I’m not worthless, or hopeless, or useless, or stupid, or melodramatic (well I am that, but not in the context of my health or how difficult things are for me).

For so long my inner dialogue has been something like, “Okay you have to do this. Why aren’t you doing it? Just do it. Try their advice. Why isn’t this working? What’s wrong with you? Why can’t you just do it? Why are you so useless?!” But I’m not useless. I’m autistic. And that just means that I need to do things differently sometimes, or I need a bit more help than most people. And that’s okay, as long as I’m trying my hardest. And I have always been trying my hardest. Every day, I’ve worked myself to sickness and insanity, almost to death, just trying to be normal. And I’m not going to do that anymore. Because I’ll never be normal, and that’s fine by me.

If you’ve made it this far, thank you for reading my experience. I tried to make a video but I’m not in the place right now, because I fear how people in my life who know about that channel will react to this. But I’ll be sure to make more posts and maybe videos (I’d like to get there) about ASD soon, so be sure to follow this blog or follow me on Twitter for updates.

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