Psychology

I AM Autistic! (duh!)

On 8th December 2017 I sat down in a psychologist’s office and underwent a series of assessments/tests that are used to diagnose Autism Spectrum Disorders in adults. I discussed my childhood, my teen years and my struggles in life both as a young person and as an adult. My Mum also filled out some forms about me and also answered some questions from the Psychologist about me as a toddler – it’s easier to diagnose ASD if they have a decent amount of history from around the age of 4, so it was really important that my Mum attended with me. I left the appointment and Christmas and New Year came and went….

Six agonising weeks passed and finally my result appointment was here.

I sat down in my psychologist’s office once again, and nervously grasping at my coffee, I waited with bated breath. She asked me what I was expecting or hoping for and I answered honestly, while looking at my feet, “I’m hoping for an ASD diagnosis”.

A slow pause and she starts reading out parts of her report (that she had yet to finish) and listed how many points I scored for certain questions and how that measured up to a diagnosis…….

It turns out that on the ADOS 2 assessment, I scored 9. The threshold for an ASD diagnosis is 7, so I can say that I am officially diagnosed as being on the Autism Spectrum and I have Autism Spectrum Disorder. I am not ‘neuro-typical’ – not that that comes as a huge surprise to anyone that knows me, personally!

Part of the report says  “she did not ask for information during the ADOS 2 in a social manner; that is, she did not inquire about nor express interest in the examiner’s thoughts, feelings or experiences, even when presented with a leading statement to investigate further.”  – I feel particularly embarrassed about this part of the report, as it seems so obvious to me looking back. I remember the discussion and kick myself that I didn’t ask her any questions about herself – but then, I also have to remind myself that this isn’t my fault. I am autistic and part of that means that I do not consider other people’s feelings or thoughts instinctively, like neuro-typical people do. It is something I can now understand and accept.

Being diagnosed with Autism wasn’t a surprise to me, but it did take me a week or so to let it sink in – I wasn’t ‘normal’ and after 31 years, it’s a shock. It did though, validate my feelings that I was innately different to the general public – an inkling I’d had since I was a young teen.

However, I now have to navigate the world knowing that my brain isn’t developed in the same way as most people. This means I’m now constantly questioning myself and trying to figure out who I am. Questions like ‘is this my autism, or is this my personal taste?’ and things like that. How much of what I do and say is down to being autistic? You can see where I’m going with this…. it has opened up a can of worms in a sense.

In contrast, it has also given me a sense of relief. Relief that there is now a clinical, medical reason for why I have found life more difficult, more stressful and less enjoyable than most people. I’ve struggled socially since I can remember and now I know why; it wasn’t my fault that I couldn’t keep friendships going through school. It wasn’t my fault that I was in my early 20s before I had a boyfriend and lost my virginity. Social skills don’t come naturally to me and now I understand why. I understand why I’ve struggled with Social Anxiety Syndrome since my teens; it turns out that Ehlers-Danlos Syndrome and ASD are often seen together – anxiety disorders are also co-morbid conditions often found alongside EDS and ASD – and I have all 3!!!

So that explains it. I’m autistic. I am autistic. And that’s okay. I guess that also makes me somewhat of a genius in a way… I’ll get onto that in another blog post!

Ta ta for now xx

 

 

 

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More than just my illness (Stanmore)

I’m still not 100% sure how comfortable I am blogging about my hidden illness. It’s a difficult thing for me to talk about, as I try not to let my illness define who I am. I started this blog as I’m a huge fan of talking about the things that interest me (like travel, fashion, beauty etc) and I didn’t really want to go down the ‘pity me, I’m ill’ route… but I believe that being a writer is about writing about things that may make the writer or the reader uncomfortable. If I only wrote about the superficial things, I would be doing myself a disservice I think.

So, if you’re not into reading about chronic illness, feel free to skip this blog post and focus on my other topics. If, however, you know someone with a chronic illness, chronic pain or Ehlers-Danlos syndrome, this may interest you!

Last year I paid privately to be seen by an EDS specialist Dr Mittal at St John’s and St Elizabeth’s hospital in London.She suggested I apply to go on the 3 week residential pain management course at Royal National Orthopaedic Hospital at Stanmore.

The three week residential course is designed to help rehabilitate people who live with a chronic illness or chronic pain.

Interestingly, I often hear people use the word ‘chronic’ incorrectly, as if to mean ‘severe’ so let me just say that chronic means long term, not severe. Although, you can have a chronic illness that is severe, the two words aren’t mutually exclusive!

The three week course is run by the NHS and so the waiting list is rather long. It took weeks to apply, to get an appointment and weeks to be assessed.

The assessment took around 2 hours. The first hour or so was a powerpoint presentation by the people who run the course – Psychologists, Physiotherapists, Occupational Therapists etc.

The 2nd hour was spent with the Psychologist and I have to say, it was the most illuminating and entertaining interview/assessment I’ve ever had.

I won’t lie – my personality is something of a headache for most people and I think I left somewhat of an impression on Andy, the senior Psychologist!

I honestly don’t know how the assessment went – we discussed parts of my personality that probably wouldn’t benefit from being in a group of chronically ill people, because I ‘don’t take fools gladly’ and I struggle with social anxiety. I’ve dealt with my EDS on my own (without any real medical input) for over 10 years, so naturally I’ve built up my own coping mechanisms for dealing with chronic pain.

I do struggle with how to pace myself, so I’m hoping I do get the opportunity to be on the residential course and see if the medical professionals can help me with the things I struggle with – pacing, finding the right exercise for me and sleep issues.

I’ve always had an interest in psychology (although I clashed with my psych tutor in school while studying A Level psychology) so talking to a psychologist was a fascinating experience for me. I’ve never spoken to anyone professionally about my personality issues (I would hazard a guess at Covert Narcissistic Personality Disorder myself) and he did one hell of a job on me! He called my bluff quite rightly, when I said I had low self esteem – and on reflection, I would say I have low confidence, rather than low self esteem.

The one thing he did say was that he found me to be an unusual (rare) chronic illness sufferer in that I don’t ‘live my illness’ – and I agree. We talked about whether or not I used the EDS forums and I explained that I have dabbled but didn’t like the competitiveness of it. I found a lot of people on the discussion boards would list their illnesses like trophies and I wasn’t interested in that. He said I was a ‘role model’ which was perhaps one of the nicest things anyone has ever said to me. I will remember that for a long time to come.

My assessment at Stanmore was on 19th February. I’ve not heard anything back, but apparently it can take weeks for them to make the final decision on whether or not they think the course is for me.

Whatever the outcome, I’m excited to see what happens with it. I’ll keep you updated on any results of the assessment!