I may be writing this week’s Mailbox Monday at 10.45pm on Monday but it still counts and I even tore myself away from the calling of the Sims to bring it to you in time! It was my 26th birthday yesterday so all of my blogging plans for the weekend just gone went entirely out of the window so I really wanted to try to keep to my new schedule at least a little bit and, as it is Autism Awareness Month, I wanted to speak to you about something very personal and important to me – being autistic.
Even though it is something that is a big part of who I am, being autistic is something that I very rarely speak about to people who aren’t my partner. Part of this is because I do not have a formal diagnosis due to major medical anxiety. It took me 5 years to get a diagnosis of Fibromyalgia from when I first approached a doctor about my symptoms because I felt too anxious to speak to a doctor even though I was often in a lot of pain. I was scared of being told by a doctor that it was all in my head or of having doctors think I’m “looking for” things that are wrong with me. I was so afraid of not being listened to and judged that it entirely prevented me from accessing help, even when I really needed it. I have very similar feelings around approaching my doctor for a diagnosis of Autism.
Growing up I knew I was definitely different from other children but it didn’t become more obvious to me until secondary school. Putting aside differences caused by my gender identity being different to the one I was assigned at birth, there were other things that made me stand out. As a child, I would scream bloody murder if anyone who wasn’t my mum or my nan touched me. I found that I often got into trouble with teachers and my peers for saying “inappropriate” or “rude” things without ever being able to understand why people were offended. I have been on the receiving end of harsh words by others about my “hoarding” or in-depth knowledge about particular subjects of interest (like my very intense obsession with the Black Death when I was 7 years old). And I often felt like my entire body was going to be crushed under the weight of my own empathy. This is not a comprehensive list of my autistic traits but just a brief overview of some of the most prevalent traits that I have. None of these were ever picked up by authority figures in my life, which I believe is largely because I was raised female, and to this day I am still lacking a diagnosis.
That is not to say that I wouldn’t like a diagnosis because I really, really would. There are lots of things I struggle with, especially in the workplace where I cannot get any support because I have no diagnosis and which I am unlikely to receive any time soon due to my fears of speaking to doctors about important things.
I think part of this fear is also deeply intertwined with another issue – I find it very hard to speak openly about being autistic not for fear of being judged necessarily, but because I’m scared no one will believe me. Because I’m so anxious about not being validated by others it means that I also find it very hard to validate myself and I get stuck in a very vicious cycle.
My partner is very supportive of me and, surprisingly, it seems that even my mum seems to be coming to a realization around me being autistic. It is not ever something I have spoken to her about but she has been dropping a lot of hints by recording shows like Chris Packham’s ‘Aspergers and Me’ to watch with me and my partner!
Being autistic is nothing to be ashamed of and there is a part of me that feels like being autistic makes me special. It allows me to see the world in a very particular way that not many other people get to experience it in and this is something I would love to share with you all in the future. I think it is also important to speak out about autism and educate neurotypical people where I feel able. There is so much bad and ignorant information out there about neuroatypical people, even from “Autistic organizations”. It’s important to actually listen to what autistic people are saying about themselves. We are people with agency and with minds of our own who deserve to be listened to, not spoken for and recognizing the amazing diversity amongst autistic individuals. We are not all cis white men and we experience autism differently!
I think it is by taking little steps like this – speaking more openly about being autistic with others, learning not to be ashamed or afraid, and interacting with positive autistic portrayals in media – that will help me to eventually get to the point where I feel like I am able to approach my doctor to get a formal diagnosis and hopefully reach a place where I feel comfortable speaking to friends, colleagues and other people about being autistic.
Red Rocket Panda 
I loved reading this. Thank you so much for sharing another part of your self, Avery. You are so amazing, so brave, and so very loved. Thank you for being such a bright light in the book community! ❤
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❤ ❤ ❤
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I have Fibromyalgia as well, though mine is still yet to be officially diagnosed.
My mother has it (diagnosed), and we tried going through the process of me being diagnosed and it was awful.
The doctor told me that I didn’t have it, and neither did my mum and he wanted to diagnose me with something that wouldn’t explain hardly any of me symptoms at all. It just didn’t feel right.
I left absolutely shattered and broke down.
I’ve been told by doctors that my mum doesn’t have FMS because it’s a crippling disease as if I hadn’t seen my own mother struggle to get out of bed a lot of days.
She was told it was all in her head for years.
Watching what my mum went through with the medical world made me so anxious about going to the doctor that it got to the point where I wouldn’t go without my mum there.
One day I will go through the process again but I think I’ll need to wait until I’m in a better head space for it.
All of this is to say that I completely understand your anxiety around seeing doctors, I still get anxious and will sometimes shut down during an appointment and am unable to communicate what I am even there for.
I just want to end with telling you that I think you’re incredibly brave! It’s really hard talking about things like this on a public platform, and it’s harder still talking about it when you don’t have a diagnoses, I always worry people will call me a fraud for talking about FMS.
This was an incredibly articulate post! I really hope you feel proud of it and what it must have taken to write and post it ❤❤
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Thank you so much for your lovely comment!
I’m really sorry that you’ve had such an awful experience of trying to get diagnosed. I was very lucky that I ended up finding a really nice doctor in the end who was very supportive of me and she actually recommended the diagnosis to me. It’s taken me 5 years to get to this point and the entire time I didn’t even know what was wrong with me, so for a doctor to not only LISTEN to me but also be able to offer a solid diagnosis was really helpful for me.
It’s so frustrating when things like diagnosis often end up as being down to the luck of whoever your doctor is. So many people miss out on being diagnosed or are misdiagnosed because of doctors and people like you are the ones who have to go without because of them.
I hope you are able to get the help you need when you’re in a better place. I don’t know if it’s ever something you’ve considered before, but it might be worth taking someone with you to act as an advocate for when you’re finding it difficult to communicate. My partner acts as my advocate in situations like that as he does it professionally in his job and knows what it is I’m trying to express. There have been so many times when having him there has made all the difference to actually getting what I need when people in authority don’t listen to me!
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Yeah it’s super frustrating when your health isn’t taken seriously!
Thank you, I’ll get there eventually aha. I know how to manage it as is at the moment so that’s enough ahah it helps that my mum has it too.
Yeah my mum is usually my advocate. She’s gotten pretty good at dealing with doctors at this point, I just don’t think I’m ready to go through the process just yet.
I hope for the best for you! Whether that be with or without diagnosis, whichever is best for you 💖
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Happy belated birthday! Did you get up to anything good?
This is such a powerful post, Avery. You’re so right – it’s by sharing personal stories like this that we can all have more awareness about autism 🙂
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Thank you <3<3 I did get lots of good things. Mostly books which is always great and my partner took me for a behind the scenes tour of the London Aquarium 😀
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I think it’s very brave of you to write this. You’re very right though. No diagnosis defines who you are.
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