How to be an Aspie – my diagnosis story.

People often ask me about how I came to discover I have Asperger’s Syndrome / be Autistic and have ADHD, so here’s a brief account, as simple as I can make it.

Most of my life I’ve had existential questions like Why am I here? What is this? Does the sky go on forever? etc.  But they’ve usually not been helpful as I overthink or procrastinate to the point of obsession.  Instead of having a moderate level of enquiry like most people, my enquiring brain tends to the extreme.  I had some wonderful other-worldly experiences, including as a young child but I forced some answers by taking hallucinogens when I was a youth.  As an adult, after reading lots of spiritual books then meeting a Sufi Master, I went down the path of extreme spiritual practice, spending twenty years as a devout Sufi-Muslim, which provided a purposeful routine of sorts in the practices (plus marriage with plenty of parenting) and spiritual satisfaction with some powerful revelations, especially on retreat and journeys to sacred places in Turkey and the Middle East.  I devote a few chapters to a troubled childhood, adolescence and spiritual seeking in the book I’m currently writing. Writing my life story has been very useful so far, for further self-exploration.

In addition to having so many questions, preferring my own company has often made things tricky.  I also couldn’t deal with school, even though I was intelligent enough to once come out top of a High School year in English, I was very disruptive and unsettled.  I left as soon as I could.  Later on these traits resulted in me not having a satisfactory job, career or an income, but again, I wasn’t unmotivated as I gained an A level in Psychology (only going to night school to accompany my then-girlfriend).  Creative projects throughout my 30’s and 40’s were exciting and ambitious but never got off the ground enough to be called a real business. “You’re really great at making things happen!” people would say. Yes, but I could I turn this creative energy into a living?  No, and it got me down.  On one hand I was really creative, hyper-focussed (mostly on spiritual and existential matters (ASD) and on the other I was very easily distracted (ADHD) so this combination meant a normal day job would at best last a year, usually a lot less as it just wouldn’t sustain my level of interest.

Rumination was rife and soon after getting a Fine Art degree in 2013 (I had given up Sufism in 2009 in favour of various styles of meditation and a three year adventure in experimental music events & label) I started to get sick of being down (bouts of mild depression) and of having no answers to my continued strange ‘state of being’ and general unsettledness.  At the same time I started to hear about autism.  Being inquisitive I did an ‘online test’ and came out positive.  At the same time my Dad said a nurse once said to him he is possibly autistic and autism is genetic, so I started to dig deeper.  I made a list of weird habits and traits (from an obsession with existence to having to sing weird little rhymes in my head, general reclusiveness, sporadic motivation, intense over-empathising and sudden bouts of tears), which filled an A4 page; 2/3 was undesirables and 1/3 was things I liked about myself but still thought they were ‘odd’.  I took this list to my GP and asked if he thought I was autistic (he asked if he could keep the list and I’ve not seen it since).  He referred me to SAANS (Sheffield Adult Autism and Neurodevelopmental Service), part of the local NHS offering (and coincidentally, based in the hospital where I was born).  Two 2.5hr sessions in a darkened room being interviewed by a specialist resulted in a positive diagnosis for Autism and ADHD.  On being informed at a specially arranged appointment, I stared at the table, literally not knowing what to think and feeling a bit awkward.  The lady specialist said “sometimes people might have a little cry when they hear this”.   So I cried a little,  but only on being informed that this was an appropriate response.  This is typical Aspergers; a slow cognition, especially in ‘social’ settings ie. with others present.  How odd that in previous years I’d trained as a mediator, facilitator, counsellor and even as a multi-faith chaplain – it must’ve been me that needed the benefits of these special services.  I even auditioned as a method actor, which now I realise was another way my brain was cleverly mirroring a common autistic trait of social ‘camouflage’, in order to try to reveal and understand itself!  (I also have a strong desire to train as a clown)  Anyway, as far as I understand it, it seems typically, autistic people will have low cognitive empathy but an excess of emotional empathy eg. “I resonate with you deeply, but please try talking with less words as it’s already overwhelming”.  Or something.

I want to mention what I’ve found most helpful is knowledge and understanding and meditation.  The monthly support groups at SAANS gave me different people’s perspectives to relate to in a caring environment (the reason I think posting this article might be useful) and a few sessions of Occupational Therapy were invaluable for strategy and management.  A daily, short meditation practice provides my brain with the opportunity to create new pathways, which means there is more fresh, new space to learn and be conscious, meaning a happier life.  Reflecting on life, backed by knowledge and shared experience is crucial.  And forests.  Overall, it’s been a fresh and new perspective on my own self that’s provided solace and awareness; an extra lens to look through, that the autism community gave me and continues to give me.  By that I mean all good people everywhere, autistic and allied, who’s aim is to shine a light on its mystery and people who simply take the time to learn a little about it. Both Sheffield Autism Research Lab and The Art House have provided opportunities for work in the field. Knowledge has made me much happier and I seem to have finally found enough of a ‘clean mirror’ to reflect and consolidate a place in my world,  to find some congruence and plan a career with it, hopefully helping others to come to terms with autism along the way.

possible-aspergers-traits diagram
Click for enlargement (found on Pinterest).
Aspergers and Clowning: no proven links.

Notes:

  1.  Dx is short for diagnosis.
  2. We are not “all a little bit on the spectrum”.
  3. The ‘autism spectrum’ is not a grading system but simply means a range of variable symptoms.  If you are ‘on the spectrum’ you are autistic.  One is either autistic or not.  Terms like mild or severe autism, high-functioning, low functioning etc. cannot be definitive because everyone is different and so these describers are relative.  If comparisons are needed, it’s better to do it in terms of support the person needs.
  4. Asperger’s Syndrome is now a largely unused term since it was removed from the DSM-5 (the most widely used medical dictionary) and the blanket ASD (Autism Spectrum Disorder) or simply ‘Autism’ is mostly used.  However, some people still use the term Asperger’s.
  5. Autism does not exist on the moon (yet) or in the Amazon rainforest. Even when there are no trees left, the indigenous Shamanic tribes will probably not incorporate the word Autism into their language.
  6. The term Asperger Syndrome was not recognised in the UK until 1991.
  7. Context is everything.

Leave a Reply

Your email address will not be published. Required fields are marked *