Friday, 5 December 2014

Asperger's and me.


UPDATE - 

I wrote this blog in December 2014. 

On the 27th October 2015 I received my official medical diagnosis of Autism. 

*The term Asperger's Syndrome is no longer applied (As per the fifth edition of the Diagnostic and statistical Manual of Mental Disorders (DSM-5)







Today’s post is very personal and I’ve gone back and forth about writing it but feel it may prove useful so I’m embarking on trying to explain it here.

I learnt recently, that I probably have *Asperger’s syndrome.

This apparently is something that comes as no surprise to my family and something which really makes no difference, except in helping me to understand things about myself, that have always been confusing.

This isn’t a self-diagnosis, this is a provisional diagnosis in lieu of a medical diagnosis, from a highly qualified NHS mental health professional, who has known me for a long time and who is counselling me through a difficult time. 

It has only become necessary for her to give this a name now,because I’m struggling so hard to deal with something very difficult. 

That is the essence and relevance and importance of any diagnosis. It is there to help.

I’ve suspected it for a while. A couple of years ago I took the University of Cambridge online Autism Spectrum Quotient (AQ) questionnaire.

It’s a well-respected indicator test and as a high proportion of my immediate family are on the autistic spectrum, I thought it would be interesting for me to take it.

I scored 97%.

I’m not given to self-diagnosis, and although the online test was useful for me, I haven’t sought a formal diagnosis previously. As a carer it fell to the bottom of the long list of other things I needed to do.

This diagnosis was brought to me in the course of discussing something else entirely. I think it was the very best way for it to have happened.

Whether you follow me on Twitter, have read any of my pieces about disability or heard or seen the interviews I’ve done about my campaigning; you’ll know me to believe wholeheartedly in the value of diagnosis.

My experiences with my two children, who are both on the autistic spectrum, have taught me that diagnosis, whenever it arrives is an individual issue, and one which affects the person and their friends and family in different ways.




Some find the notion of difference too challenging to bear, some believe disability must present along with a tangible indicator such as a wheelchair or a cane in order to be credible.

Some further believe that there is a pandemic of over diagnosis globally, which is anathema to them ; “a drain on crucial resources” and evidence of “a nanny state gone mad”.

These people are what I like to call lucky.

I can highlight here the difficulties I’ve faced at length.

Primarily, but not exclusively, my ongoing struggles with high levels of anxiety, sensory defensiveness, and fixations to the exclusion of everything else.

All of my life, I’ve found human relationships to be the most wonderful, terrifying and mysteriously complex things that I’ve encountered. It can be argued that everyone does. My problem is that I find it more difficult than most.

Put simply the more you can do, the more the world expects from you.

I’m truly fortunate to have been born to a mother who was all patience, kindness and truth.




Her wisdom and unravelling of the complexities of human relationships, minimising of my fears and straight forward non judgemental explanations of life went a long way to giving me the tools I needed to face lots of challenges.

I’m fairly gullible and easily hurt and fixate on fairness and slights. I’m also capable of verbal pugilism, insensitivity and forensic deconstruction of others motives and attitudes which is exhausting to be in receipt of. I’m also quite adept at protecting myself, by presenting a much colder front than I feel.

My mum gave me the greatest gift though because she taught me to be empathic. To see others needs as equal to our own and to understand that everyone is struggling equally with the human condition.

So when I see bullying for example or cruelty, or cynicism on line or in life. I find it hurtful and can reduce me to tears mainly because I know harsh assessments of others, are a choice.

Empathy is a skill you can learn if you keep at it.

Sometimes I fail but we all do.

When you have a truth about a condition relating to yourself proffered and then confirmed by those you trust and love the most, it prompts a great deal of introspection and reflection, over your life lived thus far and your choices.

Any immediate liberation from pain of unfairness targeting me, I’ve ruthlessly tempered with recognition of when I‘ve been fixated and detail obsessed to the exclusion of others feelings.

That’s an empathy fail on my part.  There is a great deal of checks and balances occurring in my mind currently.

I feel my detail obsession has made me a good campaigner and I revel in the minutiae of detail in terms of the human condition, which led me to want to be a performer. Drama school was a delight because I was able to immerse myself in the lives of others and utilise the tools I’d honed over the 19 years I’d been a confused human, learning and mostly failing, to fit in, until that point.

It’s a myth to assume those with ASD are incapable of creativity.  From the famous artists, writers, performers and filmmakers through history- to those we know and love personally at art school, drama school and beyond.
Creativity and ASD are entwined permanently.

I’m very lucky to have great friends and beyond lucky to have a beautiful family. I can’t begin to explain my feelings for my husband, except to say that I love him very much.

“But why” is a question I’ve asked of people I trust all my life and been so fortunate to have encountered, mostly patient explanations.

To explain myself in more detailed aspects would be too painful at this point.
The internet hasn’t proved to be a kind friend to me always and I have been somewhat adversarial in my approach too.

I must admit to feeling trepidation in terms of how this blog will be received. However it may also serve to help someone in a similar situation to my own, so for that reason I offer it now.

In either respect I feel it prudent to limit myself to highlighting just one aspect of the traits I have, in order to inform this blog.

It stems, as ever, from my usual approach to ASD, which is to offer a view of a widely misunderstood condition, particularly under recognised in women and girls.

It’s also, as always cathartic.  I’m sending love to anyone who is experiencing diagnosis, to their family, their carers and their friends. 

My hope is that people are able to listen without prejudice when someone offers news such as mine.

There is no shame either in diagnosis or disclosure.

All that anyone really needs to live a full and happy life, is supportive friendship and love. 



5 comments:

  1. I have Asperger's Syndrome too.

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  2. Welcome to the club. I fully agree with you on the use of diagnosis - I agonised over pushing for it, but it has been enlightening for me. I have a separate blog to my main site where I'm occasionally documenting my Asperger's experiences, and you can find me on twitter @liveotherwise if you want to.

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  3. It's been suggested that I have Asperger's Syndrome too, though it's not as marked as in other family members. I'm afraid of how I would feel if I got a diagnosis, or if I didn't. Glad it was cathartic for you.

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  4. Yes welcome to the club.

    You can find some helpful resources about diagnosis and post diagnosis at www.AspergersTestSite.com You may also want to sign up for the newsletter which should give you a lot of help on your journey

    This post is particularly useful for those getting a late diagnosis

    http://www.aspergerstestsite.com/1170/adults-aspergers-late-diagnosis/#.VIo5PicSjUY

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  5. Hello Nicky, Firstly many thanks for being brave & sharing this post. It was helpful for me to read. Whilst I have not got a professional diagnosis after asking a mentor in ASD for over 15 years to tell me the truth, the answer was a yes!! It was not a suprise, more a confirmation of all I have suspected for a couple of years now. I had no clue about Aspergers or ASD infact until my own daughter became seriously sepressed & unable to attend school. My subsequent research online & reading, (mainly through the night when all was quiet & I could focus), lead me to a possible clearer understanding of how I have always struggled with socialising in groups, at work, at collages, as a mum etc. How I am like a sponge to others emotions & can literally absorb someone elses mood when in the same space as them. My seeing in images & need for creativity & deep thinking. Difficulty with normal small talk. My youngest daughter is also being assessed & has not been able to attend school siince Sept. I have a blog which stared in Jan 2013 as a way of healing from my depression. It was a return to some creative art which my husband really felt was a good way of me connecting with things that make me feel at rest & peaceful. Anyway 74 posts later, Blackdogtribe publishing some of my posts & artwork, me being asked by SANE to reveiw a book by Rachel Kelly " Black Rainbow" & just this morning my blog being shared on Autism Woman Matter facebook I somehow arrived at your blog about your own discovery. If you would like to read my posts, you are more thann welcome. I am a very shy person but for some reason I am pushing ahead with my writing & telling mine & my families different story as it unfolds. It also is theraputic for me Nicky!! Anyway Kind regards & thanks again. Moira Read

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