Autism Interview #121: Autistic Soul on Late Diagnosis, Fantasy, and Autistic Identity

Autistic Soul is a 49-year-old wife and mother to three children (one also diagnosed Autistic) and the guardian of one flatulent, but lovable, lurcher. She lives in the UK and is passionate about film, tv, music, and literature. Her blog Autistic Soul is amusing and enlightening, and discusses autism, anxiety, fibromyalgia, menopause, and aging on the spectrum. This week she shared her experience growing up without a diagnosis and how she manages the physical limitations resulting from fibromyalgia. She also offers advice for families trying to balance escapism and reality.

Describe how you first became aware of your Autistic identity.

I never considered autism as a reason for the way I am until my son was diagnosed at four years of age, and it was a light-bulb moment for sure!

I self-diagnosed for four years while I focused on my son’s needs, but decades of masking and anxiety eventually caught up with me, and I suffered a nervous breakdown. It was during this time when a sympathetic Accident and Emergency doctor asked the hospital psychiatrist to see me, and after spending half an hour with me, she referred me for autism assessment. A year later I was formally diagnosed at the age of 46.

While the nervous breakdown was by far the worst thing that I’ve ever had to endure, the blessing was that I wasn’t able to mask, and so I was myself during the assessment – stims and all – and having researched autism at great length, it’s become clear to me that the genetic link lies with my mother, who I suspect was autistic too.

What was it like growing up without a diagnosis?

I knew I was different when I started school in 1975, but what eluded me was the reason why. It’s like the other kids sensed I was different to them? I didn’t belong, and they exploited my vulnerability for their own entertainment, otherwise known as bullying.

The bullying started on my first day at infants school and continued relentlessly until I left school ten years later. In those days, bullying was considered ‘character building’ by many teachers, especially the old school types who loved nothing more than to administer some corporal punishment. I often wonder if they actually liked children at all? The mainstream environment was toxic to the senses, and my anxiety was so severe that I all but shut down. However, my lack of interaction was interpreted as shyness or insolence, and I was often punished for being unable to speak. It wasn’t a choice, I physically couldn’t speak! 

School wasn’t about learning for me; it was about survival. It was about clock-watching and trying to retain the contents of my stomach. It was about fear. I left with nothing to show for my time there because I found it impossible to learn in such a hostile environment. Home was my sanctuary, but even there my behaviour was misinterpreted, and I’d find myself being sent to my room – which wasn’t the punishment Mum thought it was because all my books and records were there, innit? I know that a lot of things were harder for us autistic ‘Generation Xers’ but at least we had respite from bullying once we were home, whereas today the abuse continues via the mobile phones and social media. Honestly? If that had been the case with me, I’m not sure that I would be here today. 

When did you first experience symptoms of fibromyalgia? How do you currently manage the physical demands of daily life?

My mother, whom I loved very much, died on one of those gloriously sunny days where you feel that life is taking the piss because the weather should mirror the fact that your world has fallen in on itself, you know? The same thing happened when my dad died of cancer on a Christmas Day and Noddy Holder was screeching ‘IT’S CHRIIIIIIIIISTMAAAAAAAAS’ over the hospital radio.. I was like, really?

Mum’s death was extremely traumatic for me because it was unexpected, not to mention undignified, because her heart packed in mid-vomit. It wasn’t the way my lovely mother would have chosen to go, but at least her Earthly departure was quick, so small mercies and all that.

So, that night I woke up with excruciating chest pain, and I believe that was the beginning of my body’s surrender to chronic illness, and after 8 years of doctors phaffing about with tests and what not, I was diagnosed with fibromyalgia.

The hardest thing about this condition is that I can’t do what I want to do anymore because my life is dictated by pain that cannot be managed due to medication sensitivity. Then there is the all-consuming fatigue where I have to decide what is the most important use of what little energy I have. Do I have a bath? Or do I do a load of washing? I can’t do both, and the washing is more important. Hence, I don’t bathe as often as I should anymore (but I do run a flannel over my lady-bits because one still has standards). I’ve also had to learn to pace myself or endure days of immobility, which, truth be told, sucks when you’ve been so active.

It’s not easy to be positive when you have a chronic illness like this, but I have a choice of which attitude to take, and I want to be as positive as I possibly can. I mean, I could be angry that I can no longer go for long walks or I can stick to a virtual walk on YouTube, ask Alexa to play me some birdsong, and have some sandalwood essential oil burning away so that I get the sensory elements of an actual walk. Granted, I don’t get the cardiovascular workout from a virtual walk, but I am relaxed and that’s as beneficial as going for a march around the local reservoir, yes?

The way I want to think of it is this: I didn’t choose to be ill, but I have to work with what I’ve got and make the best of a difficult situation, but also that it’s ok to have days where I sob into my duvet and stick the V’s up to the world – as long as I pick myself back up again. 

In one of your recent blog posts, you discussed how your Autistic son prefers to live in a fantasy world because he has complete control over what happens. In your experience, do you think parents are encouraged too often to pull Autistic people out of fantasies “for their own good?” What advice do you have for maintaining a healthy balance of what you described as fantasy “living” and reality “existing?”  

Movies, music and books serve as my escapism. An example is the Transformers movie Bumblebee where music-loving-misfit ‘Charlie’ gets to save the planet with THE sexiest Autobot that ever transformed! Can I say that and not require professional help? So, for 1 hour and 54 minutes, I was connected. There was actual connection going on and maybe my fellow autistics will understand what I mean when I say that it physically hurt to walk out of the cinema and back into the world? 

Fantasy also helps my autistic son to cope with life. It’s very much a control thing because we, as autistics, have such little control over what happens ‘out there’. I, for one, cannot imagine life without being able to escape into fantasy. It’s a necessary safety valve, but it’s also something that needs to be moderated because we need to be able to function in the real world – as much as a lot of us would like to, we cannot live in a fantasy world 24/7, and it would be irresponsible of any parent to encourage this. 

Part of my job as the parent of an autistic child is to make his reality as tolerable as possible, and this means showing him how to adapt by working with his sensory issues – like going to the shops when it’s quiet and wearing headphones to block out excess noise. Parents will find that children spend less time in their fantasy worlds when their needs are being met, and this includes their educational needs, but they must be aware that fantasy/escapism may always be an integral part of their child’s life, no matter how old they are. 

Why did you select the image you did for your blog header (pictured at the beginning of this post)? It is intriguing.

I’m a visual person, and I play about with images until I find the one that resonates with me the most, and this one represents me as an autistic person with an anxiety disorder who has had a nervous breakdown. I’ve lived all of my life trying to ‘balance on a cliff’s edge’ as it were, and eventually I fell off, and it was catastrophic. I thought I was broken beyond repair, but the human body is an amazing thing, and with support and a really great therapist, I hauled myself back up to the top, and I’m pleased to report that I am back in my usual position – which is hanging ever so slightly off the edge. 😉  

What are you most passionate about? 

Music. Film/TV. Literature. I need all three (plus oxygen) to live. Music is my greatest passion because I love how my body reacts to it. I don’t just listen to music, I feel it. It invokes all my senses, even smell. The Jacksons asked us if we ‘can feel it,’ and I can, literally! It’s also provided me with a very eclectic soundtrack to my life with everything from Elvis Presley to The Sex Pistols because I love music as an art form and not just specific genres.

Favourite song? David Bowie’s Life on Mars – written about a sensitive young girl’s disappointment with reality. Need I say more?

Film, TV, and literature has provided my undiagnosed self with inspirational characters on which to base my many personas on, and the result is that I’ve re-invented myself more times than Madonna, only with less success. 

What are some of the most important factors that helped you develop a positive Autistic identity?

I advocate positive autism because I don’t see it as the tragedy that some people think it is. To me, it’s people’s ignorance and unkindness that is the tragedy.

There are many factors involved in the development of my positive autistic identity. Eventually I realised that despite having been treated like I was the problem, it was other people and their issues that were the problem. It only took me 46 years to work that one out, but I got there in the end, and I’ve been able to explain this to my son when people are unkind to him.

When it comes to identity, some people choose not to be defined by autism, and that’s fine, each to their own, I say!

My personal view is that autism defines me, because if I wasn’t autistic, I wouldn’t be me. It’s who I am, and I’m not in the least bit ashamed of it, and if other people are ashamed or uncomfortable with me being autistic, then it’s their problem, because my days of suppressing who I am in order to try and fit in or appease other people are over. 

In many ways, my life began when I realised that I was autistic. I can breathe. I can be myself, and it’s been a very liberating experience.
It’s this positivity that I hope to pass onto my son because I don’t want him to grow up feeling anything except the first rate autistic human being that he is. He has much to offer this world, as all autistics do. 

I can’t change my past or any of the unpleasant things that people have done or said to me, but it’s served a purpose in giving me the determination to make sure that history will not repeat itself with my son. He thinks it’s absolutely fantastic that his mum is autistic too! Regarding my blog, I came to the autistic community late in life, but if I can inspire a parent to see their autistic child as the amazing individual they are or help a fellow autistic feel a little more positive about the crappier things in life, then I’ve done something worthwhile.

After decades of pretence and suppression, I get to be true to my autistic soul. This is who I was born to be, and at last, I am happy.

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