Surveying The Terrain III: ARCAP Research Priorities of Autistic People

Between June 2020 – Feb 2021, I participated in over a dozen online surveys relating to adult autistic experience (more info here). Most were research projects focused on the very things I was experiencing at the time – mental health & suicidality, autistic burnout, financial not-so-well-being, among others – and the surveys provided me a vehicle to process my thoughts as well as contribute to advocacy.

In this third instalment of my ‘Surveying The Terrain’ series, I’d like to highlight a research study that I felt was exceptional in its approach, and a clear example of autistic-sensitive (& generally human-friendly) design.

ARCAP Research Priorities of Autistic people – What’s important to Autistic people and their families, in having a good life?

(Otherwise known by the much friendlier What’s Important For Your Good Life?)

This survey was from the Aspect Research Centre for Autism Practice (ARCAP), with the aim of determining which areas of autism research to prioritise over the next 5 – 10 years, based on the feedback of Australian autistic adults. 

I spent a month, from Oct – Nov 2020, completing the survey by degrees.  During that time I was also working on several other autism surveys, and had a lot of physical and emotional distress happening in my life. The design of this particular survey enabled me to write in detail about what I was experiencing during that period, as well as any relevant personal history.  As with a private journal, or a good therapeutic dialogue, I was given time and space to reflect in depth and gather my thoughts, and to articulate my lived experience in my own voice.

The survey was comprised entirely of questions, or prompts, about the participant’s life.  There were no multiple choice or ‘forced answer’ formats, and there was no sense of any generic assumptions, or of being ‘treated as a number’. The questions themselves were not even numbered, just grouped under relevant headings.

On registering my participation, I was immediately struck by the forethought of ARCAP’s confirmation email:  I was given 3 options for completing the survey: 1) online, 2) writing my response on paper (a Word.doc version was attached), or 3) recording an audio or video response.  Having had to request an editable Word.doc version for the other surveys, this was already an easier entry point.

But what impressed me most of all was the care put into the questions themselves – the invitational communication style. The questions were thoughtful, specific and really thought-provoking. The language was simple and direct, without feeling patronising or intrusive. The overall tone felt informal without being colloquial, almost conversational, and seemed to convey genuine warmth and interest, a sense of humanity.  

I liked that the format allowed me to express my responses in my own words, rather than selecting from a narrow range of tick-a-box indices.  There was no confusion or pressure of having to choose an inadequate answer from a selection of imprecise statements. And there was no sense at all of being judged or evaluated.

Occasionally I emailed the Senior Research Officer to clarify something, or to apologise for the length of my answers; I was always reassured that I could write as much as I wanted, and to take as much time as I needed. 

There were around 40 ‘questions’ – many were framed more as suggestions or prompts – and from the outset I was told I didn’t have to answer all of them. Respondents were given complete autonomy over what and how much to contribute. When I finally finished my response, it was nearly 30 pages long, yet I was thanked for providing such detailed, thoughtful and insightful information.  And I was given a $100 voucher – the most I was paid by any of the surveys I responded to.  At every point of the process, I felt my contribution was genuinely valued.

I believe this is an example of professional practice that should be noted by any researchers, health professionals, and educators engaging with autistic adults. It immediately communicates a primary intention of genuine interest in the individual as a person.

I won’t reproduce all my answers here due to their length, but I’ll include a few to illustrate the survey’s design, and also in case any other autistic adults find my experiences familiar to their own in some way. Many of my answers were relating to life circumstances that have changed considerably since then.  Also, as the questions encouraged me to write freely, a lot of my answers opened up themes I wanted to explore further in separate writing. I’ve already expanded on a few of these themes in some earlier posts, and I have a few others earmarked for future writing.

The survey’s open format meant I could show how my answers might change in different contexts, across my lifespan, both pre- and post-diagnosis. I realise not everyone would engage in the way that I did, but I still believe the complete list of questions would make a really useful & creative self-reflective exercise for any adult, autistic or otherwise.

Just look at the opening invitation:

So to start, tell us what a usual day looks like for you – from what you do when you get up in the morning through to bedtime. Tell us about your usual everyday activities – such as work, study, volunteering, parenting, meeting up with others, family life.

Due to some recent health problems, currently my days are very different to how they have been in terms of routines. (Note: At this time I was mostly bedridden for several months, in pain & with limited physical movement, so most of my days were spent writing for autism surveys or distracting myself watching old movies).

For most of my working life I have been self-employed on a freelance basis, so I have rarely had any particular routine in my days.  While I enjoy systems and sticking to reliable plans, I find daily routines monotonous and restrictive. I prefer the flexibility to respond to each day in its own context. I’ve needed that degree of flexibility in order to cope at all with the complexity of my life. 

For the last 5 years though (until my recent health problems), I have mostly spent my days working full-time, unwaged, at home – composing, recording and editing original music & sound design, which I then release as curated collections online at my Bandcamp site.

  • During those years, my general daily pattern was usually:
  • Wake at 6:30am (when partner and stepson get up for work / school)
  • Take stepson to school bus at 8:00am.
  • Shower, dress, possibly breakfast, then work straight through until I meet the school bus again at 3:30 pm.  A day like this might involve one or all of the following: developing ideas on various musical instruments, recording either spontaneous improvisations or repeated takes of carefully-rehearsed parts, hours of careful editing to sculpt & arrange the recorded sounds, and likewise hours designing the album cover artwork, converting finished files, writing text about the album and launching the music online.
  • 3:30 – 7:00 pm is usually devoted to various domestic tasks and dinner. 
  • 7:00 – 8:00 I might do some more work while my partner puts her son to sleep
  • 8:00 – 10:00  My partner & I  spend some time relaxing, talking and cuddling together, after which I work or watch a movie until going to sleep between 12:00pm to 1am  OR
  • 8:00 – midnight I work (usually editing my recordings)

What makes you feel good about your life at the moment? What things are working well for you?

In my current state of having limited physical movement, what ‘works’ for me are small things:  sunshine, watching the potoroos & wallabies grazing around the house, the loving support of my partner, the tranquility of our bush environment, any relief from physical pain,whatever creative activity I can manage (writing & musicking).  I have to make myself conscious of these things as ‘positives’ though because most of the time my default is to notice what isn’t working – ie constant anxious thoughts, dealing with whatever domestic tensions are happening and acute awareness of bodily pain / discomfort. 

What makes you feel not-so-good about your life at the moment? What things aren’t working well?

As mentioned above, my default mode of thinking is usually concentrated on what isn’t ‘working’ – years of anxiety and depression will do that.  At the same time, I am acutely aware of the paradoxical nature of existence, so I don’t see myself as ‘just being negative’.  Perhaps I focus on problems because I want to find solutions, or develop better adaptive strategies internally (eg patience, acceptance, compassion).

A current example of this would be my relationship with my partner – I very much want the intimacy and companionship of our relationship, but other factors about being in relationship seem oppositional to this. For me, constant daily interaction is often exhausting (I prefer to live alone & interact in small bursts); my partner and her son are quite noisy, talkative & physically energetic (I prefer long periods of restful silence in a tranquil, soothing environment); the shape of my days is determined by their school / work routines rather than my own (I prefer to wake & sleep according to my body’s needs, and I prefer mornings to be a quiet, gentle start to the day); I constantly have to meta-explain my intentions even in the most mundane interactions so as to minimise miscommunication (my partner often takes things personally or jumps to conclusions about my intentions).

There are a few layers of anxiety that are always present as undercurrents in my thoughts and emotional experience. 

One is grief related to not being able to live with and parent my own two children fully. They have lived mostly with their mother, who for the last 18 years has deliberately made it difficult for me to participate as their father – this has been a significant contributor to my depression and numerous breakdowns over these years.  I feel my children’s absence acutely, and it’s taken extra effort (including Family Law processes) to ensure that we maintain any kind of relationship.  It’s especially challenging now that they are older teenagers becoming more independent, and increasingly spending less time with me.

Another constant undercurrent of anxiety is about aging – not out of vanity, but rather being genuinely disturbed by feeling my body disintegrate, and being acutely aware of my mortality, realising how afraid I am of dying, especially if it involves pain.  Within this are also thoughts about whether my partner will stay with me as I get older, will I be even more dependent on her care, will our relationship survive after the kids are all living independently, how do I let go of the father identity I’ve built so much of my life around?

In amongst this are feelings I’ve failed in life – that despite my talents and intelligence (both of which, society assured me, were a magical guarantee of a successful life), despite my dedication to living with integrity and conscience, and all my other efforts to make life ‘work’, I am still not financially independent, I haven’t built a ‘name’ for myself with my ‘gift’, and I rely on my partner for food & shelter.

While I still have many moments of happiness / pleasure / contentment, I feel I have lost my sense of joy in living, and wonder why remain when so often I feel like a burden or irritation to the people I love most.  I’m also realising that the older I get, as my capabilities diminish, the more I’m going to need help, so I feel the enormous uncertainty of being alone in old age, unable to control my circumstances due to lack of resources.  I have no superannuation, no savings, no house of my own, and seeing the current government’s disgraceful treatment of our aging population doesn’t offer me any hope.

Most of the categories are what you might expect from any broad survey of a chosen demographic – health, social life, family, home, money etc.  But what makes this study so different is that instead of just ‘rating’ an experience on a linear scale, respondents are encouraged to consider the particular details of their experience more thoughtfully. 

For instance, the section titled ‘Being Fit and Healthy’ doesn’t ask ‘how healthy are you?’, but begins with ‘do you usually feel healthy and fit?’ – a subtle shift in language that enables a very different cognitive process. The section then invites you to describe particular aspects of your personal health, such as dietary and sleeping habits, as well as asking what might help if you wanted to be healthier, and what medical supports you might need. 

When focusing on sensory experience, many autism ‘tests’ (eg AQ Test) will concentrate on a very limited range of phenomena, based on a very limited range of autistic stereotypes.  The tendency has been to focus on autistic sensitivity as a pathology – a social impediment, a deficit, a problem – and of course for many autistics it is debilitating. But many other autistics, especially adults with an Aspergers expression of autism, have more subtle or nuanced sensitivities, and have also developed adult coping strategies over time.

In the ARCAP survey, all forms of sensory experience were framed as ‘Sensory Needs’. What powerfully subtle language! Immediately, by focusing on ‘needs’, the respondent can feel included and cared for. This framework also allowed me to explore the various insights I have gained into my own sensitivities throughout my life, pre-diagnosis:

Firstly, I don’t define my sensory experience as limited to the usual five physical senses. For instance, I have always been kinesthetically sensitive to the emotional ‘energy’ of people around me, often when the emotion is not being openly expressed.  If I’m in close physical proximity to someone who is feeling stressed, tense or angry in some way, I feel it as tension in my body.  In order to check whether my body’s sensation is just my own anxious tendencies or genuinely what the other person is feeling, I either have to remove myself completely or ask the person directly what they are feeling.  This makes daily interactions with my partner and family quite exhausting, because I sense so much of the constantly-changing and unspoken dynamics between people.  It’s also possible that what I’m registering as ‘kinesthetic’ might actually be secondary to a heightened visual or auditory attention – that my reading of voice tone or body language is almost instantaneously translated into a kinesthetic response.

I also often experience sensory sensitivities that seem more in the realm of intuition or instantaneous bodily ‘knowing’ – premonitory impressions, insights into a person’s character that they may not share with others, a sense that something is just ‘not right’ about a situation.  Over the decades I have incorporated this sense into my creative work, eg for many years my creative specialty was in personalised artworks that reflected the inner nature of a person’s character.  This intuitive/empathic sense was essential in my work as a teacher & facilitator, enabling me to rapidly read and respond to group dynamics in the moment.

Since I was a boy, I have known myself to be sensitive in the empathic & intuitive sense, and in my younger adult life (20s – 40s) I developed many skills for utilising this sensitivity as a practical strength rather than a (perceived) weakness – it has helped me build deeper emotional intelligence and compassionate understanding, which in turn have been important features in my years of work as a teacher and arts facilitator.

Now, in my 50s, I seem to be far less resilient in dealing with physical sensory overload, and in some contexts my sensitivities are more pronounced – especially the impact of noise, light, certain textures and physical pain.  One of the factors of autistic burnout is that already-heightened sensitivities become moreso, and I can definitely recognise that in my current experience.

Since my diagnosis and subsequent research, I may also be allowing myself to acknowledge some of these particular sensitivities more. 

These days my sensitivities become especially magnified when I’m under a lot of emotional & psychological stress, particularly if I’m overwhelmed by sudden changes to plans / external pressures from other people or events, or there is too much noise and activity around me.  I am far less able to tolerate crowds and even small groups of four or five can create overload.

In terms of needs:  environment is essential to my sense of equilibrium.  While I spent half my life living in cities (Newcastle & Melbourne), my childhood was spent in a rural bush setting and I deliberately moved to Tasmania in 2001 to be away from city life.  I need my living environment (home) to be quiet & calming, removed from traffic noise and close neighbours, immersed in nature (bush / forest or beach), lots of natural light inside, with a feeling of open space outside, and preferably open water and/or mountains in view.  All these factors provide me with a feeling of safety and sanctuary.  This kind of environment allows space for subtlety, for deep reflection and contemplation, or for high-focus activity without distraction.  Aesthetically this environment is soothing for me too. 

In my auditory environment, I am sensitive to unpredictable sounds, especially sounds in the upper register (sudden high laughter, sharp sounds, metallic clangs etc).  Whereas I used to be able to tolerate public noise (eg cafes, restaurants etc), I now find the jumble of constant loud chatter, the sharp hiss and clang of coffee being made, the clatter of plates and the incessant background music (usually too loud, and too energetic) far too abrasive and upsetting.  I also find it hard to be around people who talk loudly or with a shrill tone, or who speak too rapidly for me to concentrate on the thread of what they are saying.

I cannot focus on listening in situations where 2 or more people are talking at once, and I can’t read if I can hear people talking or music playing.  At home I prefer quiet and stillness, and the unpredictable noises and movements of my family around the house often add a layer of tension in my body. 

Also within this section, I was invited to think about any positive aspects of my sensory experience.  As someone who has always been ‘sensitive’ in one sense or other, I have defined it for myself in many different ways over time. I grew up with many conflicting messages about sensitivity, and came to believe it was a weakness or character flaw.  As mentioned above, I eventually developed ways to transform my thinking and harness these sensitivities as abilities in my life and work. In further describing some positives, I wrote:

We live in a beautiful bush setting, a sanctuary to all kinds of flora and fauna, so my heightened senses allow me to experience a deep sense of attunement with the subtleties of the environment, which I find calming.

Throughout my life, my kinesthetic sensitivity has helped me enormously in many areas that involve a kind of sensuous attention. For example, feeling & developing understanding of how energy moves through my nervous system, via body-awareness techniques such as yoga & Vipassana meditation, has been really helpful in relaxation, giving massage, lovemaking, and the acute focus I give to the tactile contact in any creative work I do, such as drawing, painting or playing a musical instrument.  I have also used this sensitivity to access all kinds of more mundane manual processes by ‘feel’.

Unsurprisingly, my audio sensitivity is central to my entire musicmaking process – I become very attuned to complex subtleties and textures within the sounds I create, record, and later shape through my editing processes.  This sense has developed to the extent that I can distinguish intricate rhythmic and melodic patterns in the sounds of nature eg the subtle interplay between birdcalls, air movement etc. I can relate to other people who describe experiencing the world as music.

In a similar subtle shift of language, mental health was explored under the heading ‘Feeling Good About Myself’, and was also referred to as ‘mental well-being’.  The survey encouraged me to think about the things I do to care for myself, and whether anything might improve my mental well-being.  As mental health has always been such a core theme in my life, I had a lot to offer in my answers. I’ll make use of these answers elsewhere, in a dedicated article about depression and mental health. 

Likewise, the ‘Having Enough Money’ section opened up another core theme in my life, and so my answers will form the basis of a separate article looking at the impacts of chronic poverty.

In the section ‘My Home’ I got to talk about what matters to me in my immediate environment, what I like or dislike about my current home, and so on:

We live within a larger rural valley region of SE Tasmania. We rent a spacious 2-story house in a beautiful bush setting, surrounded by all kinds of flowering flora, and wildlife that graze around the house.  Our home is situated up on a hill away from traffic and other people, and here we all feel both a sense of sanctuary from the wider world, and direct contact with the seasons.  The house has lots of natural light, and plenty of room for the whole family of five when my teenage kids are here.  There are several beautiful beaches and coastal walks within easy driving distance, likewise the nearest township. Our home is decorated with a mix of interesting ephemera from nature, and all kinds of artistic artefacts (paintings, small sculptures, carvings, collage and drawings) that family members have created over the years.

My general preferences in any kind of home are: to have an atmosphere of calm and harmony; to have a sense of safety, and of sanctuary from the unpredictable wider world; to have a sense of spaciousness, even when the home is small, with plenty of natural light.  Warmth. To feel nature close by.  Earthiness, simplicity.  A safe vessel for contemplation and reflection, and for uninhibited expression.

Also this particular house has allowed my partner and I some specific flexibility in how we navigate autistic needs within our relationship.  For instance, because my two teenagers are usually not here, the spare rooms give my wife and I the option of sleeping separately to accommodate different needs. Many couples, where one or both are autistic, have reported this as a very helpful option if it’s available. There is also a small studio cabin separate from the house, with a loft bedroom and a creative workspace, which provides an option when anyone in the family needs more solitude.  Lastly, there is plenty of open space, garden, dams, bush & forest surrounding the house, if anyone needs to disappear into nature for awhile.

In considering whether there was anything about my home I would prefer to be different, I wrote:

I find the daily interaction of sharing a living space with other people exhausting and challenging, even when they are the people I love.  I function best when I can have extended periods of solitude, and this is hard for my partner to comprehend because her needs are more toward interaction.  While it might offend many people’s definition of ‘relationship’ or ‘family’, my ideal compromise would be if I could live most of the time in a small, self-contained cabin, on the same property as my partner. In my thinking, we would both have a sense of our own home space, and we could visit each other.  Unfortunately the cabin here can’t provide that option, it has no heating or insulation, and isn’t designed for living in.

When it comes to the autistic capacity for high-focus attention, very specialised interests & deep knowledge on a particular topic, many measures for evaluating autism still frame this ability as a social problem, a tendency toward fixation or obsession – something that should be ‘reigned in’ or modified.  By contrast, this survey frames it simply as ‘Doing Things I Enjoy’ – in other words, a natural positive expression of the individual. I described my interests and passions in this way:

My entire life has been devoted to the exploration and embodiment of creativity.  Since I was 4 my creative passion was drawing, which organically led me into a passion for teaching and creative education.  Another lifelong creative passion has been playing music, which has led me to a passion for exploring sound.  I am self-taught in everything I do, and my years of teaching (without any formal qualification) taught me that thinking, not talent, is the central creative agent for any creative activity, so I tend to apply my creativity to anything I give my attention to, as a way of practicing awareness.

I like exploring ideas, especially in the realms of philosophy, psychology, the nature of existence, perceptions and sensory experience. 

Exploring music has been a passion since I was young.  I have played instruments (self-taught) since I was 14, used to perform live and teach guitar / ukulele / african percussion, and have a vastly diverse music library.  For the last 5 years in particular my creativity has been primarily focused on making and recording my own music at home.

I think my over-riding passion is ultimately my self – that is, I am constantly compelled to examine my perceptions, my patterns of thinking and behaviour, and to reach as far as I can in my interrogation of what it ‘means’ to exist in this human experience.  I am not motivated by selfishness or insensitivity to others, it’s more that whatever I experience in my nervous system, my first point of reference is always ‘myself’.  So I enjoy any activity that benefits my self-exploration, and feeds my contemplative nature. 

If a subject is relevant to how I experience my life, I enjoy delving into it and researching it deeply, from many angles – autism / Aspergers has been a good example of this, and I have continued my interest in researching it since my initial self-assessment.

My creativity process is inseperable from my living process, whatever I learn from one connects automatically to the other.  I tend towards the mystic, the alchemic, the shamanic, the contemplative, all of which are methods of investigating the process of living, beyond the merely material.

The section ‘My Social Connections’ immediately suggests ‘Tell us what it’s like for you to be with other people’. Nowhere does this language assume that I have some social deficit, awkwardness or incapacity, or that I need to fit any particular index of social aptitude. Just tell us what it’s like – who is important, how do you get on with them, what do you do together. Part of my answer described my preferred styles of social interaction:

As a younger adult I was much more gregarious and enjoyed a lot of my social interactions.  I seemed to move in and out of various subcultures or social ‘groups’ with ease, usually enjoying the freedom of being a fringe-dweller, and learning a great deal about human behaviour in the process.

I have had many sincere acquaintances, in the context of my work in education and the arts, and most of them remained work-related rather than social.  In some cases, as a result of ongoing creative collaborations in our work, I developed longstanding friendships, but only a few of even these people knew me in the context of the rest of my life.

I have always been fascinated by, and very observant of, other people, but I began retreating from society about 15 years ago.  First and foremost I prefer solitude, in my home environment, where I can feel free to behave however I feel to, and no need to explain or justify anything.  This is by far the most effective way for me to feel relaxed in my natural Being.

After my own company, my next preference is one-on-one, in a relaxed setting (usually my home or in nature), having meaningful conversation (not small talk), with enough space & time to allow for subtlety, nuance and depth in the interaction.

I lived alone (except when my kids were with me) for 10 years before meeting my partner 6 years ago.  My work (teaching) was very public, but I lived very privately, having developed a distaste for most human social behaviour.  Living in a small rural community, I chose to keep my interaction in the community to a minimum, after several negative experiences with gossip & small-mindedness in other small communities.  At times in my life I have made sincere efforts toward being part of a community, and have learned a great deal from those experiences; but ultimately I have never needed to ‘belong’, and I dislike the predictably petty human behaviours that invariably emerge in any group of humans.

These days virtually my only social interaction is with my immediate family – my wife & stepson, who I live with, and my two teenage children, who are with us occasionally.  I have deliberately withdrawn from general social activity and spend most of my time at home.

After living alone for so long, sharing a house in a family & relationship on a daily basis is still a challenge, and requires a lot of mental & emotional energy.  My partner and I have quite a tempestuous dynamic – both of us being very sensitive – but we have also found profound strength and tenderness together. We have had to face many extraordinarily difficult crises as a team, and have shown ourselves how deeply we can reach into our relationship when we ride the waves with awareness, in union.  Perhaps the most fundamental challenge is navigating our different communication styles. 

On being asked to describe how I feel about the way other people treat me, I wrote:

While my family still communicate their love to me in various ways, I often feel that my intentions are misunderstood – that I am perceived as too serious / negative / critical / difficult / insensitive. When I ask questions in order to clarify something, they become defensive because they think I’m being interrogative.  I feel distressed when the people I care for the most, misinterpret me this way.

I think deeply about the nature of things, I perceive complex patterns and have developed many insights that are not common to the ‘majority’ or ‘mainstream’, but often these ways of perceiving seem so obvious to me that I assume they should be obvious to others.  In describing my insights, I have often been told that I sound arrogant, or ‘intellectually superior’ in my tone, or that I am being dictatorial, which is not my intention at all.

In my thinking, I often tend toward the deeper contexts of any given situation or experience.  The final category of questions was the only one I didn’t complete: the questions were asking me to consider my future, at a time when my deeper context was of struggling to cope with the present. I was in a state of profound despair, physical & emotional pain, hopelessness and grief. At that time I felt I no longer had any control over anything in my life. It was impossible to imagine ‘future’. However, I responded to the first part of the question, so that the researchers would still get an authentic snapshot of my autistic experience, within ‘deeper context’.

My future – my life ahead: Thinking about your life ahead of now, what does your life look like for you in say 2-3 years?

Firstly, I’m 55, which feels old to me – I’ve lived ahead of my years since childhood.  I was only diagnosed with Aspergers two years ago.  I have lived with depression since adolescence, have had several complete breakdowns and recurring bouts of suicidality.  Despite being intelligent, gifted & highly creative in education and the arts, I have always just survived below the poverty line, through sheer persistence & creative adaptability. 

I have had a succession of failed relationships, two of which involved the trauma of being separated from my children – from my first son when I was 24, and my next son & daughter when I was 41. For the last 18 years, I have also endured ongoing narcissistic abuse and had my relationships with two of my children deliberately undermined.  Since my diagnosis I have been struggling to find any point in imagining a ‘future life’ for myself, as the accumulated strain of all these life factors has now led to severe autistic burnout, and there are no adequate autistic-specific supports for late-diagnosis adults available in Tasmania.

I am increasingly anxious about my impending death and overwhelmed by my sense of failure in life.  I feel I am in a process of physical and psychological entropy, my sense of self and identity being stripped away.  I have no choice but to exist from day to day, immersed in the present. I surrender to the fact that I will never be able to accomplish the things I had once hoped for in life.

Life has shown me that any attempt to control or predict future events is futile, we can set intentions but they rarely manifest according to expectations.  Every day brings new variables to be dealt with, often emotionally complex, and more often now I feel as if my personal aspirations are meaningless – which of course, ultimately, they are. 

While there is much loss, being present in this way can point to a very different experience of living – a letting go of desires and ambitions, of opinions and assumptions, and just responding to life as it happens. 

I would like to extend my sincere thanks to ARCAP and Trevor Clark for allowing me to quote some of the survey questions.  I would also like to acknowledge all the authors of the survey: Trevor Clark, Liz Pellicano, Kaaren Haas, Vicki Gibbs, Ainslie Robinson and Heidi Merrington.