From Diagnosis to Dialogue, Jonathan Drury. Dec 14th 2018

This is the text of the talk given by Jonathan Drury at the first Autism Dialogue conference, Sheffield Quaker Meeting House, 14.12.18. Audio is here

Jonathan Drury

“So, what if the reason you are here is not the reason you thought you were here? Think about that.  This is how we can gently open-up potential, by accepting the unknown.  OK, please bear with me and listen to the sounds in the room and feel safe…

So yeah, hello! Autistic Exhibit A. Speaker number 1. Welcome to our experiment!

Soon after my diagnosis in 2014 (which I’m still naturally trying to get my head round) I paid to see a counsellor who didn’t think it was really relevant. I occasionally still attend the SAANS monthly support group, I’ve been on the Autism Partnership Board and Strategy and Training sub groups, I’ve completed a PGCert in Autism Spectrum at Hallam, where I learned so much,  and about the ‘Autism Wars…’ I began working with Academy of Professional Dialogue – thanks to Hester’s introduction, for whom I’ve written a paper on and now facilitating  groups online) I co-designed a research proposal for Autism Dialogue with Dr. Liz Milne from ShARL, who sadly couldn’t be here today.  That collaboration started back in Summer 2017 and caused the initial spark. Last month we were invited to share that proposal at Scottish Autism and as a result, I’ve been invited back and very happy to see my new friend, researcher Alastair Clarkson who’s travelled from Scotland to be with us today.

Since the words ‘Autism Dialogue’ popped in my head, I can certainly say just one major thing I’ve learned is that while sometimes in our societies very useful, masking or over-masking makes an unhappy boy, and in complicated and often unforgiving environments, it happens….. and it’s in creating safe and conducive environments where much of the spirit for Autism Dialogue resides.

So this journey of self-discovery has been peppered with aspects that I’ve felt fundamentally aren’t connected except through me and if I am the vessel for countless views of autism, my question was how can I then view myself and understand how they all fit together, and even thrive?

The answer had already been provided some 8 years earlier in the form of Bohm Dialogue, first bestowed on me by Hester Reeve and Helen Blejerman as the best part of my Contemporary Fine Art degree, and I’m extremely pleased they are both here today.

The logo also seemed to come out of nowhere and represents to me the indivisible whole, the perfection of the ‘many and the one’, everything affecting everything else and perhaps (borrowing from Bohm’s Dialogue and quantum terminology) non-localised thought being shared.

Today is really about what happens when people all come together – that collective synergy is what makes dialogue so appealing for me.  And here we all are. And I think increased well-being and cohesion through exploring and refining our communication, are perhaps things we can all understand and begin to work with.

I recently heard an autism research professional talk about a large project they were involved in, which included dealing with two essential elements; ontology (meaning who am I?) and epistemology (meaning what do I know?).  The group concluded that they couldn’t understand why they didn’t previously see the importance of these two questions.

In Dialogue, they are fundamental.

Ask yourself now – Who am I?  …. What do I know?

The past two years organising and convening dialogues have been extremely interesting and if nothing else comes out of it, I’ve made some wonderful friends. Whether they want to be my friends or not is another matter..!

For a reference point, I often remind myself of Bohm’s legacy – as co-designer of his named Dialogue method – and his work in the quantum field, that is now being picked up again in the global scientific community. Apparently a wonderful and very sensitive character and a genius (in the true sense of the word) and yet a troubled man. His legacy continues, nurtured by many including Peter Garrett who spent several years studying with Bohm and whose name is also attributed to the seminal paper ‘On Dialogue’ (which I assume you all have read!) and Peter’s professional partner Jane Ball who you will also hear from shortly.  Jane and Peter have both worked for decades developing and applying professional dialogue in numerous countries, recently co-founding the International Academy of Professional Dialogue and provided me and many others much selfless mentoring, via online video conferencing and in person.

I’m very pleased Carol Povey joins us today out of kindness. Sometimes a simple hello on LinkedIn can lead to… well, an internationally renowned keynote speaker agreeing to speak at your local gig!

You will hear from Rachel and the Cygnets (that’s my new name for our flock of visiting OT’s from Cygnet Health Care)… about direct changes they made as a result of attending our groups, and I need to add that Cygnet Health Care are a national company leading the way with experts by experience even working at corporate level.

Thank you in advance to our regular attenders who’ve chosen to speak today; Peter, Anna, Dinah, Panda, James, Jenn, some of whom are also convening their first dialogue for you this afternoon.  Thank you to another brave person, Libby for agreeing to come and talk to us (and her Mum Kym of course) and Dr.Lisa Reidy and Professor Nick Hodge, representing the collaborative work of Sheffield Hallam Autism Research Partnership.

My Historical Context

Like Bohm and many of us, I believe communication in our societies is in crisis, and by exploring language, meaning and communication (and in our case in the autism context), we take humble steps into the unknown together, to open up new space for potential and generative dialogue.

OPTIONAL At school I was the one of the brightest but one of the naughtiest pupils as I sought to align my sensory needs and seek thrills that would match my inner fire in one of my early clashes between self and society. Since then I’ve learned to desensitise and to mask but the price has been high, and I’ve paid it, through employing various intense practices since a youth which helped immensely. I may come across as confident but to my detriment, often the more nervous I am, the more confident I appear, sometimes I’m extremely controlling…and inside I am concerned with many things and overall what on earth am I doing here. I say this in hoping to shine a light on the vulnerabilities shared by most autistic people. 

Now I also care for an autistic person who really needs it.  I’m one of the luckier ones (OK that’s an assumption but I live a relatively happy life), well you know the difficulties… my autism isn’t your autism, but we are linked with this term, our personalities bound by a predominantly medical construct, in this science-dominated society.

SOME THEORETICAL BACKGROUND

I try to work with the non-dual aspect of autism, dismantling and exploring the ‘us and them’, the me and you, me and it, this ‘I’ve got it’ or ‘it’s got me’ or ‘I’m in this movement not that one’…me and my AUTISM –  I’m here and inside each of us there’s an untouched ‘is-ness’ and our experiences are as much a part of us as we them.

However, to avoid getting too abstract, fighting for justice and rights in our society is what the marginalised need to do, but as Nick Hodge stated in his professorial inaugural lecture last year, “rights are only activated if the dominant group recognises first the humanity of those made marginal and then acknowledges its corresponding duties to protect these rights.”

I often feel our Western overly-mechanistic world is the polar opposite of a world of natural presence and potential… and I think this links to more anthropological and cultural questions of autism, elucidated upon by Dr.Joe Long last month at the 50th anniversary conference of Scottish Autism, a charity with a very forward thinking research arm.

Examining autism from the perspective of an integrated whole enters the realms of metaphysics, and approaching notions of ‘the self’ in the English language, becomes less tennable. I sympathise with Dr. Olga Bogdashina who has been criticised for being too broad in her approach, describes wider autism perspectives requiring the disciplines of  philosophy, anthropology, linguistics, biology, quantum mechanics and other sciences.”  Bogdashina, O. (2011).  In another case of language shapeshifting, ‘environmental consciousness’ takes on other meanings when we consider that autism is an ecology in a social environment, and the personal impact we all have on each other in our shared spaces.

So What is Bohm Dialogue?

Contrary to popular belief, Dialogue does not mean two people talking (the root dia is confused with duo), nor is dialogue discussing or debating. There’s a widespread assumption of what dialogue is and what it constitutes.

Dialogue is made from the Greek words dia, meaning across or between and legein, meaning to speak.

Bohm tried to develop an experimental approach to language – a “new mode” of using existing languages – which he called the rheomode – from the Greek ‘rheo-’ to flow. This approach was based upon his thesis that it might be possible for “the syntax and grammatical form of language to be changed so as to give a basic role to the verb rather than the noun.

He argued that our language is far too object oriented or noun based, and that is making us see a world of static objects instead of dynamic processes.

Interestingly, Canadian autistic artist and researcher Erin Manning describes autistic perception as the direct perception of the forming of experience.  And of course for some autistic people, this neurology can be frightening, immobilising and disabling in many ways.

Language and dialogue can be more exciting and full in potential when seen holistically, in a multi-dimensional, dynamic and context-dependent process of creating meaning.

We may explore the word DIA – GNOSIS and open up our own different interpretations instead of simply the medical one.

The word autism comes from the Greek autos, meaning ‘self’.  Our autism phenomenon raises many serious questions relating to fundamental concerns such as the nature of self,  identity and existence, society, wholeness, philosophy, health and medicine. So what is this ‘self-ism’ that has become an ‘epidemic’, mainly in the West?

What is Dialogue?

For me, DIALOGUE is dropping down into the heart….. and later this afternoon you can say what it is to you.

Dialogue is not :::::

Agenda-driven, debate, politics, spiritual, a platform for airing views, silent consensus, intervention or therapy. But it may contain elements of all of these and it is for us to examine them together – safely …… if and when they arise.

It IS. Quite Simply. Dialogue.

Do we purposefully avoid tension and conflict?  Not at all, but with no agenda, typical tension, often due to language limitations is far less likely to arise.  Emotions can and do run high but it is amazing to witness how the collective rallies round to genuinely support the individual in a moment of need or overwhelming breakthrough.

Experiences in the sessions

In Autism Dialogue, no one is obliged to speak.  Listening is one of the four practices and we also value silent recovery.  We avoid placing undue attention on attenders and autistic people should be supported to use non-normative modes of communication, even telepathy if that is their chosen way.  A human gift is that your flow of thought is known only to you, even in a total change of heart.

In our dialogues this year we addressed a common duality; that of autistic and non-autistic people.  We thought about it and wrangled with it together and then the non-autistic people went away and we ran three sessions with just autistic people, then came back together for a final three hour session just last month.  By assembling our own micro-society, dismantling and reassembling it, we were able to interrogate and soften the boundaries.

Author and researcher Nick Chown states  ‘..the ontological status of both the autistic and non-autistic neurotypes is partly dependent upon the nature of the society. We might want to say that the ontological status is socially constructed to this extent. UNQUOTE (Chown, 2014).

There should be more spaces in society to enable its own interrogation and of our assumptions of humanness and normalcy, culture and notions of identity.  Interestingly, Brett Heasman pointed out in a recent study that there is growing evidence that autistic people understand each other in specific ways (Heasman, B., Gillespie., A 2018) – and we can look forward to further developments in that area and explore them in our own activities.

By creating our own intersubjective environments, the autism community can go beyond a culture of fear and blame to one of familiarity and collective power on a more pro-active ground.

Autism doesn’t distinguish between people or types and nor should dialogue and everyone should be welcome to participate.  If participants can understand the aims, intentions and practices (and here is one of the challenges) then there is participation and infinite potential – at the microcosmic level with change at the macrocosmic.

Challenges, for example, what can we do about unheard voices?  This is a question we have been asking and it has been very uncomfortable.

I read the phrase in a research paper, “Capturing voices of those who do not speak” – it makes me want to run away!

Increasingly elaborate scientific research into this thing we simply call autism, can detract us from the fact that people need supporting, enabling, empowering and they, WE, need help to do this now. And it makes sense the more of a collective we all are, the more we can move towards what it is we all want out of life.  National spending priority should be placed on applied research to help people living with neurological differences, instead of on basic genetic, biological and medical research.

Autism is an innate part of a person, so it is not subject to ‘cure’. It is impossible to separate the individual and their autistic experience from society and yet, in returning to the origins of the modern autism construct, Hans Asperger stated: “The autist is only himself… and is not an active member of a greater organism which he is influenced by and which he influences constantly”.

We have come a long way since Asperger, now expelled from the books and may have even today been put in prison as a Nazi collaborator.

Thankfully, Dr.Luke Beardon here at Hallam University Autism Centre has placed autistic outcomes as totally intrinsic to environment, contrary to Asperger’s primitive view of an ‘isolated self’ and neurodiversity movements are testament to the power of collective consciousness.

The future together

We want your thoughts and voices this afternoon and beyond.  Going forward there is a lot of work to be done. Setting up as an organisation will require evidence ( – because we love evidence don’t we?!), resources and substantial commitment and support.  Example, include training and to have in place supervision for new and established facilitators as well as professional standards.

Whatever happens, I want to carry on as a volunteer and make a PROPOSAL for AD19* We have BOOKED every 3rd Friday from March 15th – booking will be on the website .

I would also like to tentatively propose a regular meeting for Autism Dialogue as a national group.

I’d like to end with a favourite quote from a paper by MacLeod, Lewis & Robertson, who stated

“There needs to be greater recognition that the autism identity is a social construction with the potential to constrain and degrade. In identity terminology, individuals need to be enabled to identify with a group that is perceived as constructive and empowering rather than detrimental and limiting.

Autism Dialogue accepts anyone who identifies as autistic and anyone who is in any way connected personally, academically, professionally.

More autistic people may be empowered by positively identifying with their own community.  This can perhaps relieve pressure from private and public healthcare services. Autism Dialogue can be used alongside organisational development, at the interface between researchers, staff, service-users and their support networks and as a front line offering via GP services.  Perhaps we can begin to help society to be more open and celebrate more of the positive aspects autism and all autistic individuals bring.”

Jonathan’s own dialogue and coaching website is here.


Bits not used:

“This journey as a detached person has brought me to extreme lifestyles, swinging around on a cosmic pendulum, from as a child knowing there was more to life than this… five years “partying” in my teens (I use that word very loosely as a lot of it was alone), straight to 20 years practicing a strict form of Sufism (this included holing myself up in a shed for six weeks only eating lentils and onions), then co-producing five incredible children, living on a Scottish island, running a extreme experimental sound night (yes people do play their hoovers on stage), a Fine Art degree, running an international organic food business with my wife, and a fascination for for the last ten years with Advaita Vedanta (that’s the non-dual tradition), Quantum science and neuroplasticity, to name a few interests. All I can say now is thank you to my one and only spiritual guide… and whoever filmed the talks between Krishnamurti and David Bohm. And I’m sorry to whoever I’ve dragged into my bizarre world. Oh.. that means you too doesn’t it?”

Examining autism from the perspective of an integrated whole enters the realms of metaphysics, and approaching notions of ‘the self’ in the English language, becomes less tennable. I sympathise with Dr. Olga Bogdashina who has been criticised for being too broad in her approach, describes wider autism perspectives requiring the disciplines of  philosophy, anthropology, linguistics, biology, quantum mechanics and other sciences.”  Bogdashina, O. (2011).  Ecologically speaking, ‘environmental consciousness’ takes on another meaning when we consider the social environment and the personal impact we all have on each other in our shared spaces.”

MacLeod, Lewis & Robertson said “There needs to be greater recognition that the autism identity is a social construction with the potential to constrain and degrade. In identity terminology, individuals need to be enabled to identify with a group that is perceived as constructive and empowering rather than detrimental and limiting. (MacLeod, Lewis & Robertson, 2013)

For many people, facing the unknown of who and what they are can be a very daunting prospect, but with the right setting and joint agreement of the basic aims at the outset, we can and have faced the unknown together, for where the unknown resides, new knowing can emerge.

Participants have expressed feelings of self-acceptance and alignment, pride and gratitude for the space, but these were checked by others who felt excluded by language or felt that deeper levels of meaning were being overlooked. We worked with the idea of dialogue for a time but this could’ve been longer. We began to face uncomfortable things that we share and steered towards qualities and issues such as elitism and ableism.  Together we asked what IS the ‘elephant in the room’?

It seemed to me that discussing autism as a phenomenon is a bit like watching fine sand fall through the fingers… there are as many nuances and topics as grains…on the whole at once beautiful and terrible (like the Goddess Shiva) and so deeply humbling.

Remember – Bohm’s quantum theory? He developed in detail a mathematical and physical theory of implicate and explicate order.  He believed that the working of the brain, at the cellular level, obeyed the mathematics of some quantum effects.

So what does that mean in practice?  Well, if the famous split screen experiment demonstrates that observing an experiment changes its results, where does that leave existing notions of participatory research?

Genuine collaborations are crucial to get us back to the natural state, to address this splintering silo-consciousness – and fear-driven populations – starting with everyone being together is how to begin to address some of the serious injustices and ignorance of people of difference.

Life is research. Experiencing researching experience… who is researching who is experiencing?  If we are not careful we forget the goal (what is it?) STOP – –  and this is why autism research can only be designed with the participants. Who owns the word autism? Who owns the word research?

We can discuss applications of participatory, action research, heuristic enquiry, Interpretative phenomenological analysis and grounded theory.  But this isn’t a research conference.. unless you want it to be.

We must agree and have the same intention on the aims and the practices to start with, then off we go.  In the way that many people have accepted that autism is a bad thing – what we believe is reinforced, even though autism is not always bad for many autistic people.  Sure, it may be that we only hear the vocal ones and for whom autism isn’t an entirely bad thing….

Meanwhile, the decisions families and individuals make about autism diagnosis and treatment are directly influenced by cultural background. (Ennis-Cole, Durodoye & Harris 2013).

Autism Dialogue could be at the hub of a research-based practice ecosystem, with experiential knowledge generation returned to the community.

The work doesn’t finish until humanity understands that the message autism brings is precisely that autism (a phenomenon wrought with complex challenges), is a huge opportunity for humanity to grow towards a more enriched and enriching world.

Jonathan’s own dialogue and coaching website is here.

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