Autism Dialogue Out of the the Box

Oak tree photo by Jonny Drury

Mindlessness:  “A style of mental functioning in which people follow recipes, impose old categories to classify what they see, act with some rigidity, operate on automatic pilot, and mislabel unfamiliar new contexts as familiar old ones.  A mindless mental style works to conceal problems that are worsening.” (Weick and Sutcliffe)

I like being me.

I’m starting to think that there’s something awry with the language generally used in the current autism discussion, on all sides.

We’ve all heard the line “we’re all a little bit autistic”.  The current discussion has a resounding cry from the actually autistic people that this is nonsense and one must be autistic to have any authoritative point of view or true understanding.  Even self-diagnosed autistics have to literally take the oath, certainly on Twitter.   But what about the ambiguous world of academia and science?  I’ve read many articles and the most recent book of a succesful and established academic and writer on autism, but I still don’t know if he autistic is or not.  Closet autism is not something that exists in academia alone and many people in responsible positions may well have good reasons for non-disclosure.  Is it important that an autism academic discloses?  There should be a good reason for only using objective, scientific language about a truly subjective phenomenon, upon which  transparent communication of experience is crucial to the discussion.  Does academic context imply there’s not enough of a conclusion to use autism as a definitive term, let alone apply it to oneself?  The material I’ve read on my Masters degree so far disproves most theories and places the origins of what we have very recently come to know as autism in a highly questionable light.  But by not clearly stating whether one is or isn’t autistic, aren’t we adding to the confusion? Perhaps we really are all ‘a little bit autistic’ and we don’t want to admit it because this is far too simplistic and doctoral students and professors everywhere will suddenly find themselves alienated from a large proportion of friends and followers.

I am autistic.  Being autistic is who I am.  But let’s take that apart a bit.

Firstly, being diagnosed by the team at SAANS using the DSM5 or whatever in 2014, makes me autistic. It is their official terminology for my type of brain and I accept it.  When I say I am autistic, I am using their frame of reference, not necessarily mine.  Being labelled autistic by the NHS carries some weight in society of course, otherwise I wouldn’t have sought their knowledge; I wanted an explanation and I was diagnosed by the UK’s predominant medical establishment.  I’ll leave my question of whether I am #actuallyautistic or not, and perhaps just such a fantastic actor I fooled them, to another post.  The NHS gave me an explanation, I got the biggest national medical organisation to diagnose me on their terms.  I wasn’t ‘identified’ as autistic by the NHS, as some people prefer to say (the NHS are not in the business of identities, as far as I am aware); my identity is made up of lots of things including this thing called autism, which interrelate to varying degrees and altogether identify me as who I am.

So I don’t question the definition, instead I accept the different views.  The NHS think I’m ‘autistic’. Hurrah! Good for them!

As well as a medical condition, autism is also a social, psychological and psychal phenomena.  A religious person told me its spirits in me.  All points are valid.

I am not separate from other people. But what do I mean by that?

What I mean is from a sociological, psychological, identification, spiritual and quantum point of view (that’s a lot of views), all of us exist, at the very least,  in this space-time continuum and social construct together.  In this sense, if someone wants to believe “we are all a little bit autistic” it’s fine by me, because it is not necessarily driven by an undermining of autistic people or some other ignorant, separatist motive.  It’s also on the face of it, a bit silly; one could just as easily state ‘we’re all a little bit non-autistic’.  Perhaps though, the sentiment behind this statement might be “We are all in this together, I have an understanding, I have compassion, I am intuitive, so hey, let me help.” and  perhaps the cliché, “we’re all a little bit autistic” is now just a little bit worn and needs to be examined in a positive way, by using dialogue, eg. by adopting the stance of:

“I accept your different view so let’s talk about that together.”

The field of Autism itself stems from early neuroscientists who observed particular behavioural styles in certain groups of people and so a great body of knowledge develops and continues to do so.  One can even study a Masters degree in Autism, of which I am a student.  However, many autistic people would deny the right of anyone who is not autistic (by diagnosis or identification) to have a truly valid knowledge on the subject.

Experience cannot be proven as entirely subjective and isolated as quantum field theory shows. So why would the father of an autistic daughter, who has devoted his life to her, since her birth for many years, not have experienced her life to some degree as the same as his and have a view on what it’s like to be autistic? Why would the experiences and views of a mother of two autistic adults, an autistic husband and an autistic father, be less valid than an adolescent boy with a diagnosis or a successful businessman who identifies with Aspergers? By osmosis, is there to be some sharing of autism, behaviourally or otherwise as a phenomenon and can the same be said for all traits in everyone on a societal level?  Our individualistic, opinionated and judgemental society can be a dangerous place and autistic people are just as much at risk from the dangers of peer-group pressure and with the additional complications of unusual modelling and masking habits, perhaps even more so.

Life is too short to be so technical and militarily challenge everyone who doesn’t meet our immediate frames of reference; we can always build on our compassionate, openness and flexibility.  Compassion begins with acceptance.  Gratitude is the key to happiness.

Autistic people should accept being autistic, and with more of an open mind and heart, and learn to accept it as only one of a multiplicity of different viewpoints.  By witnessing an example of honesty, others might see themselves more clearly too.  By holding mutually exclusive ideas in our minds at the same time, we might understand a lot more about, and be more accepting of, each other’s differences.  Acceptance of diversity leads to unity, that’s always been my position.

 

What is Autism? Discuss

I copied Nick Walker’s summary text to a page , which at the moment I really like and so thought I’d provide the opportunity for public feedback by also writing it as a post here.  I will use your comments to add to the page also, (please state in your post if you do not want me to do this).
There is provision for comments below.

What is Autism?  By Nick Walker

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterised by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologised in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

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.