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| A few of my 'special interests' over the years - planes, music, football, pandas crafting and er Top Gun: Maverick 😅 |
Almost a year ago I posted the blog A is for Autism? where I pondered if I had Autism after years of being diagnosed with a myriad of different mental illnesses (a brief recap - depression, anxiety, depression & anxiety, OCD, depression again, BPD and OCD again) and this week I finally got the answer to my questions. Yes I am Autistic.
More accurately I have Autism Spectrum Disorder (ASD) with elements of Dyspraxia, Dyscalculia and most surprisingly Dyslexia. Anyone who's spent any time with me knows how clumsy I am, I walk into things, have no spacial awareness, was crap at riding a bike (sorry Dad the Spice Girls CD bribe didn't work so well 😐) and often just find myself on the floor with no idea what's made me fall over. They'll also know my terror when it comes to numbers, I can barely add up, have to use a calculator for the simplest equations (even just subtracting), I transpose numbers, can't remember strings of numbers even after just reading them so the Dyscalculia was pretty damn obvious.
The real surprise was the Dyslexia element. I've always been a reader, without being boastful, as a kid I was years ahead of my other classmates in reading and would take out 10 books a week from the local library and be back the following weekend to change them all (If you don't believe me then ask Mum!). I incorrectly thought that Dyslexia was all about not being able to 'read properly' so surely would never have applied to me but it turns out that mild Dyslexia in adults is more than reading problems. The British Dyslexia Association lists symptoms of Dyslexia in adults as -
"Everyone's experience of dyslexia will be individual to them but there are common indicators. A cluster of these indicators alongside abilities in other areas could suggest dyslexia, and should be investigated further.
Do you:
- Confuse visually similar words such as cat and cot
- Spell erratically
- Find it hard to scan or skim text
- Read/write slowly
- Need to re-read paragraphs to understand them
- Find it hard to listen and maintain focus
- Find it hard to concentrate if there are distractions
- Feel sensations of mental overload/switching off
- Have difficulty telling left from right
- Get confused when given several instructions at once
- Have difficulty organising thoughts on paper
- Often forget conversations or important dates
- Have difficulty with personal organisation, time management and prioritising tasks
- Avoid certain types of work or study
- Find some tasks really easy but unexpectedly challenged by others
- Have poor self-esteem, especially if dyslexic difficulties have not been identified in earlier life"
I actually do tick a lot of the diagnostic boxes for the disorder which again was incredibly surprising (I even did the screening checklist available on their website and got a score of 62 indicating definite dyslexia). I shall definitely get less cross with myself for my lack of concentration when I'm trying to read (even when it's books I'm dying to read!), I also wonder if Dyslexia was a factor in work problems when I took down notes etc incorrectly even though I was convinced that's what I'd been told.
So back to the main ASD diagnosis, once we knew about all the different symptoms and facets of the condition it didn't come as a surprise. My initial when we got the news reaction was "thank god it's not my fault" (The psychiatrist gave me a quick call the day after my assessment just to say 'yes I was Autistic') . I'd always felt and been lead to believe by some, er kind, people that all my mistakes or just general way of being was wrong and I deserved every bit of the bullying and criticism I've ever received.
We had a full 'feedback session' a week later where he went into far more detail about how he and the team came to the diagnosis and the different aspects of my diagnosis (see above). It was the first time I've ever felt that I 'made sense', the feeling that I've had since I was really, really young that somehow there was something different and wrong about me but I couldn't understand what. As I got older into my teens I blamed myself for not having the 'right' interests, being unable to conform to what everyone else did not matter how hard I tried to copy what they wore and how they acted. I've always automatically trusted people to a fault and, despite my best efforts, assumed that their intentions are good. This nearly put me in a few pretty horrible situations in school and later life.
The blog I linked at the start of this blog goes into more detail about lots of my symptoms in relation to being at school and the crap they caused me. Also my inability back then or today to stop talking about my special interests despite knowing how annoyed and bored they make the people around me. It's almost like an involuntary movement of my brain and mouth so sorry to all of you who have to endure mentions and musings on planes, music, witchcraft, pandas, dogs, bunnies (new ones hopefully being adopted in the spring!), tattoos and er Top Gun 😂.
Aside from the above and the stereotypical attributes of hating change, being rigid in my opinions and being unable to cope alone there are far more elements that until I started really researching the subject I hadn't realised were all part of the spectrum but now make a lot of sense.
One that will make us all chuckle is my insistence on an all black wardrobe, once I discovered gothic/punk/rock clothing as a teen I fell in love, especially as being different to the crowd is celebrated! I did flirt with a rockabilly/vintage look for a couple of years and although the clothes were lovely (I still adore seeing people dressed in that style) they just never felt like 'me'. So when I reverted back I felt 100% more comfortable, especially after more piercings and tattoos were added! Whilst we're on the subject of comfort, I realised that I've never actually felt comfortable in my body. I don't mean that in a "I hate the way I look" but in a physically uncomfortable with how my body feels and a vague disgust at the things it does.
Sensory things are a large part of the diagnosis and explain why bright lights really hurt my eyes and certain flickers of light such as a bulb dying off or the flickering of light between trees when I'm travelling gives me a fast track ticket to migraine alley. It also explains why certain smells can make me physically sick, I can't stand certain sensations such as rain, the sun being too hot on my bare skin or certain foods. On the plus side there are sensations I love such as being in water swimming or a nice hot tub or going on fast fairground rides, I love the thrill and the twists, turns and bumps shake my brain chemicals up nicely. So if anyone wants to get into Thorpe Park free as my carer ..... #JustSaying
I could go on and on about the various things that make up my condition but I can hear the groans of those of you who've got this far from here. The real question is what's next? Well honestly I don't know. At the moment I'm still really low after the diagnosis, whilst it was the one I hoped for it's still not fun having to go through and list everything that you do wrong or is wrong about you. Also ASD disorders are unchangeable, they aren't like an anxiety or depression where in some (and I stress only in some) cases improvements can be made, behaviours altered and therapies that can help. There's no silver bullet or special medication for Autism, it's a condition that cannot be changed, improved or cured. It is what it is and nothing will change that.
There's also the mental health problems that I still have, just because I now have an Autism diagnosis it doesn't mean that they go away. The psychiatrist (unofficially) said that my BPD diagnosis from back in 2014 is incorrect, apparently with women we're often diagnosed with BPD or BiPolar rather than ASD because we present so much different from boys and men. My counsellor I had last year said she thought I had a form of PTSD called Complex PTSD from the years of living with an undiagnosed condition and also the abuse and bullying I received because of it.
Whilst I don't want to end this blog on a downer I'm quite aware I've been waffling long enough and anyone who's still here is probably gagging for a cuppa/glass of vino or G&T (I'll take option 1 or option 3 please). So next is a fight with the crap mental health team to get them to stop discharging me every time their 'treatments' don't work and to re-assess my diagnosis. Hopefully by then my ASD diagnosis will be sitting a little easier with me and I'll be ready for a fight.
Until next time, take care and go and get that beverage!
Love Jen
XxxX
