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 living 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 series of ‘Surveying The Terrain’ blogs, I’ll publish some of the notes I made in my survey responses; I’ll include whatever questions or statements are relevant for context, but not the entire survey; in places I’ll expand on the notes to clarify an idea. My intention is really just to share my thoughts, autistic or otherwise. Perhaps they’ll resonate for you or stimulate other thought.
In most cases, I’m actually responding more to (or being critical of) the language and thinking used to frame the question or statement, particularly where it’s ambiguous or assumes a stereotype.
The Adult Autism Spectrum Quotient (AQ) test
The AQ test is a self-assessment tool designed by Simon Baron-Cohen and his colleagues in 2001. It is not intended as a diagnostic, but may be included as an element within a diagnostic process.
I first completed this test online in early 2018, and self-assessed as being on the spectrum. I was bothered then by the same statements that bother me now, but there was no facility then to add more personalised responses.
So many of these statements are entirely context-dependent, and I really don’t like that I feel forced to give incomplete or incorrect information about myself – especially when the function of this information (the diagnosis) is for a relative stranger (a psychologist or other health professional) to formulate a perception of me.
I am sensitive to other people having an incorrect understanding of ‘me’, having struggled with feeling misinterpreted throughout my life. Is this just my ‘pedantic’ autistic nature? This word is so often used to suggest an irritating behaviour, but in a society that’s increasingly lazy about how it formulates perceptions, I feel it is even more important to model precise communication wherever possible.
In the examples below, many of the statements clearly imply particular autism stereotypes without allowing for other presentations that are equally ‘autistic’. In the 20 years since the AQ was developed, and like the Empathy Quotient designed in 2004, many autistic adults have challenged these limiting stereotypes, and it’s distressing to see these assessment tools still in clinical use when they reflect outdated data.
The ‘test’ consists of 50 statements and a ‘forced answer’ format, with 4 answer options: Definitely agree / slightly agree / slightly disagree / definitely disagree. Of the 50 statements, I had an immediately clear response to 21 of them. Below are my more personalised responses to the other 29 statements. To me, there is a big gap between ‘slightly’ and ‘definitely’, and I almost prefer tests that offer a spectrum from ‘always’ to ‘never’ because they at least use a more incremental scale of reference. For many of the statements below I would more comfortably answer ‘mostly agree’. I made the following notes on 1.7.2020:
1. I prefer to do things with others rather than on my own.
In general I prefer solitude, and I prefer to ‘do things’ on my own terms, according to my own impulses; but there are also particular things I enjoy doing with others eg meaningful conversations, exploring ideas, sharing intimacy (in any of its forms), and creative collaboration.
2. I prefer to do things the same way over and over again.
I know this statement is aiming to gauge repetitive behaviours and tendency to rigid routine. For myself, it is a mix of distinct factors.
Creatively, I often use repetition and reiteration as a way to explore new ideas. There are certain techniques and stylistic forms I return to often because they are familiar and reliable in their effect, and yet also offer infinite possibilities for experimentation. In making music, I often tend towards long pieces with a repetitive pulse, as I enjoy the calming trance state this induces. However I will also become dissatisfied if things become ‘too much the same’ – I still need texture, nuance, colour and depth in life.
In some areas I have very definite ideas about doing things ‘my way’, but in general I prefer systems to routines. ‘Routine’ to me implies drudgery and tedium, and feels like an imposition on my sense of personal freedom. I think of ‘systems’ more as a form of creative pattern-making and problem-solving, employing clear frameworks & steps that can streamline information to make a process more efficient – and thus more satisfying.
Domestically I have some very particular pragmatic systems, like putting objects in the same place so I know where to find them, or washing up in stages that enable easy stacking and work from cleanest to dirtiest to economise on water. This may look like rigid behaviour to others, to me it’s simply a matter of practicality and economy.
Many forms of ‘systems thinking’ are beyond my natural understanding (mathematical / mechanical / political etc). However, I am naturally analytical, so as an artist & educator I have developed many systems for breaking down a creative process, whether technical or intuitive, into its component steps.
I am also drawn to systems of thinking that offer foundations for better living; examples include Zen and Taoist psychology, Vipassana meditation and other mindful practices. Many of these approaches benefit from repetition in order to habituate helpful qualities – compassion, patience, communication etc – yet allow for greater spontaneous response in life.
I certainly like a degree of predictability in my life, but not rigidity. My preference is to find the systems that work for me, and be able to implement them in my life without judgment or interference from outside. This can be challenging within a family / relationship dynamic, which is full of daily variables, and other people’s own preferred routines.
3. If I try to imagine something, I find it very easy to create a picture in my mind.
Is this statement trying to discern imaginative capacity or sensory processing? In the former I have no trouble imagining in pictures, in the latter I have learnt (by exploring systems that increase conscious sensory awareness) that my sensory processing is predominantly a synthesis of visual / kinesthetic.
6. I usually notice car number plates or similar strings of information.
Firstly, this statement is doubly dissonant in that it actually suggests two completely different points of reference: one is very specific (car number plates) but the other (similar strings of information) is completely ambiguous. My brain is geared for patternmaking, but has nothing to with numbers. The ‘strings of information’ I notice have much more to do with other patterns, those of human behaviour, thought, communication, emotion, nature and existence.
7. Other people frequently tell me that what I’ve said is impolite, even though I think it is polite.
As per my comments in the EQ test, I don’t use ‘politeness’ as a behavioural index. I try to respond to interactions as authentically as I can in the moment, and this sometimes confronts other people’s expectations or habitual thinking. I can speak my mind while remaining sensitive to, and respectful of, the other person’s view – I just don’t think in terms of ‘polite / rude’. I prefer an approach that is both considerate and truthful.
11. I find social situations easy.
Again, context. I tend to think that the term ‘social situation’, used in discussions of autism, still assumes a very generic perception of accepted ‘norms’, such as ‘social situation’ meaning ‘group’ coherence. In my experience, any interaction between two or more people is a ‘social situation’.
If the ‘social situation’ is one of people I trust, or in the context of my areas of interest / expertise (eg education / arts / exploration of self), I will find it easier. I always prefer one-on-one interactions, but that doesn’t mean they are always easy.
Being ordinarily reclusive, I experience my daily interactions with partner & children as ‘social situations’. I don’t describe it as ‘easy’ – communicating with people is often emotionally complex, and requires my deliberate, concentrated attention. This is even moreso with those for whom I care most deeply, and I generate the energy for these ‘social situations’ even when I’m exhausted, because the interactions matter to me.
12. I tend to notice details that others do not.
What kind of details, and through what senses? This is a ridiculously open statement – surely every individual perceives reality particular to themselves, and will always exclude certain details? Also, while many autistics report acute perception of detail, an experience of visual detail is very different from an experience of emotional / kinesthetic (or other sensory) detail, and may not be as easy to articulate or even recognise in oneself without developing a vocabulary for it.
Some details I’m completely oblivious to, others I’m very sharply attuned to, depending on setting and my level of attention. My particular sensitivities (visual, auditory and kinesthetic) often mean I notice subtleties and nuances in behaviour, emotion & communication that others don’t. In visual art and music I can become very attuned to details that others might miss, having had a lifetime’s immersion as a creative technician myself. Again, context-dependent.
13. I would rather go to a library than a party.
I would rather stay at home than go to either. I know the choices are designed around social interaction / sensory issues / function, but as with the choices in statement #24 (museum / theatre), I would rather stay at home. In the past, I have enjoyed all of the options to varying degrees, entirely depending on the moment. These days, most of the things I prefer to do (eg write, create music, reflect) are things I can do at home, in the comfort of my own environment.
14. I find making up stories easy.
Another statement that (to my autistic mind) assumes we all share a common definition, and more deeply assumes this singular definition as a baseline of ‘normal’. And is the statement aiming to measure imaginative capacity?
Among my own definitions, I tend to think that the human brain is always ‘making up stories’, consciously or otherwise, as it seeks to make sense of existence – an intricate evolutionary survival reflex, hard-wired into our DNA. In that sense, every experience within the nervous system, every description of reality, is storymaking.
If I define ‘storymaking’ in a more creatively expressive sense, whenever I create an artwork or piece of music, I am ‘making up stories’ in sound, texture and colour. In the privacy of my imagination I regularly create stories, but if asked to verbally improvise a story to an audience (even of one), the expectation to ‘perform’ intrudes and I feel too self-conscious to allow spontaneous creation.
In terms of my own imaginative capacities, I can also see how all of my anxious and depressive self-talk involves elaborate imagination and story-making. The brain still has to make extremely complex connections within itself to imagine the worst possible scenarios, or to generate the specific biochemical charge for each of the states we experience as despair, fear, hopelessness, grief etc.
15. I find myself drawn more strongly to people than to things.
‘Things’ is such vague and assumptive language – does this mean inanimate objects? While many autistics feel more connection or calming through inanimate objects, concepts, systems and information, there are equally many autistics who relate deeply to other people, and thrive on interaction.
I think, perhaps more than people or objects I am drawn to ideas, which I can explore via both people and objects. I am definitely drawn to some kinds of objects for their aesthetic pleasure, or inherent ‘thingness’, and I can certainly appreciate that objects are usually predictable and don’t require response.
19. I am fascinated by numbers.
This statement is obviously designed on the incomplete stereotype of autistic bias – the polymath, engineer, scientist, technologist etc. I have no interest in numbers, but I am autistically fascinated by other kinds of patternmaking systems: words, ideas, and sound. In my youth, my fascination with words led me to explore symbols, alphabet systems, codes and absurdist wordplay. I feel it is more relevant to look at the deeper thinking processes underlying the fascination, rather than the chosen symbols (numbers, words, etc).
20. When I’m reading a story, I find it difficult to work out the characters’ intentions.
This depends entirely on the story and the author’s skill. And whether it’s relevant to the story to work out the character’s intentions. When I’m reading a story, I am engrossed in the experience of it unfolding, so I may imagine the character’s intentions, but my attention is on the present.
21. I don’t particularly enjoy reading fiction.
I very much enjoy reading certain kinds of fiction, specifically fiction that contains intelligent and thought-provoking ideas. I tend not to read according to ‘genre’, but by authors whose thinking I find stimulating. I rarely read merely for entertainment, and choose both fiction and non-fiction that contain deep thinking and observation, philosophical or psychological insights, and explore notions of perception and reality. I often make similar choices in films, using the medium to flex or re-stimulate certain areas of my thinking. I especially enjoy people who write autobiographically about the themes mentioned above, as it gives me a sense of the author as a person.
22. I find it hard to make new friends.
In my first few decades I was more open to meeting new people, but selective about deeper friendships. I have enjoyed a wildly diverse range of meaningful acquaintances in my life, most often in the context of my work in one field or other; many of these continued as collaborative professional friendships for many years. I have only ever had a small few of deep enduring friendships, in which I can unreservedly trust, and feel accepted unconditionally for all that I am. These days, I don’t know that I find it ‘hard’ to make new friends, I just don’t actively seek to. I understand from experience that meaningful friendship takes years of life-sharing, and I think I found it easier to invest myself in that way when I was younger.
23. I notice patterns in things all the time.
I notice (and create) patterns constantly, but especially in my perceptions of nature, the cosmos, human history, music & art, human behaviour and cycles of time. I have no interest in numerical patterns.
25. It does not upset me if my daily routine is disturbed.
I don’t consider I have a personal daily ‘routine’ as such. The rest of the family has a domestic routine with some parameters I have to conform to (school / work / dinner / bedtime), then I build my day within that. It would be more accurate to say that if I am immersed in a creative process I don’t like to be disturbed, and if plans have been made, I don’t like them to be suddenly changed or disrupted.
26. I frequently find that I don’t know how to keep a conversation going.
Communication is not only about words, it is an interaction in spacetime. Anything might happen. Is conversation a requirement?
When I was more social, and under the right conditions, I very much enjoyed keeping conversations going if the subject matter was inspiring. Sometimes I deliberately keep a conversation going even if the subject doesn’t interest me, in order to practice a more creative response on my part – knowing that it’s the quality of interaction that matters more than the words.
I tend to think that generally people avoid authentic communication in conversation, and I’m never motivated to keep a conversation going if it only consists of meaningless chitchat. I also believe there is great value in people being able to comfortably share silence together, it can be a deeply intimate communication in itself.
27. I find it easy to “read between the lines” when someone is talking to me.
To me, ‘reading between the lines’ is making assumptions, something I feel only ever leads to miscommunication. I’m amazed that ‘reading between the lines’ is accepted as a ‘normal’ behaviour in communication, when it clearly causes so many problems in the world. Also, I often sense kinesthetically if someone is not telling me all of what they mean, but that’s different to me thinking I know what the missing information is. The best way for me to find out is to ask & clarify.
I’m capable of making those kinds of assumptions, but I often take people at their word and expect people to say what they mean. Hints or inference are too easily misunderstood or missed altogether, and I tend to think that the habit of asking clarifying questions is good practice for any clear communication – and especially so when communicating with autistic people.
28. I usually concentrate more on the whole picture, rather than the small details.
I find this statement especially tricky, as I usually take both perspectives, and often simultaneously. An example could be how I perceive certain patterns of human behaviour – I see patterns that span millennia and I see extremely detailed individual nuances. I often use this zooming in/out to extrapolate what I feel is the ‘essence’ of something, its core expression.
31. I know how to tell if someone listening to me is getting bored.
This depends on whether the person feeling bored is being honest about it or not. I can usually gauge their level of interest or if their energy is flagging by observing their face, but I also think that people should take responsibility for either just stating they’ve had enough, or thinking of creative ways to make the conversation more interesting for themselves. I tend to think of ‘boredom’ as a state of creative potentiality that requires our personal choice – it’s not anyone else’s fault or responsibility.
33. When I talk on the phone, I’m not sure when it’s my turn to speak.
I have had this experience, but it depends entirely on the conversation, who I’m talking to, my mental state at the time etc.
34. I enjoy doing things spontaneously.
It’s a paradox: I definitely enjoy doing some ‘things’ spontaneously, and every day I embrace something of the Unknown. At the same time I appreciate clear indicators, a sense of parameters, an organised plan and feeling prepared. Earlier in life I was often much more spontaneous in action (impulsive & intuitive), so I think age and context are important factors for me. Now that I’m older, I may seem less spontaneous from day to day, but I feel that I respond more spontaneously to whatever arises in each moment.
I am especially spontaneous in my musicmaking process, composing and recording each layer intuitively as I go, usually without preparation or predetermined form, and never intending to recreate the music once a piece is complete. As a creative medium, music is more fluid than paint or even film, it is always moving and can be shaped into infinite possibilities.
35. I am often the last to understand the point of a joke.
Is the statement assuming that ‘understanding the point of a joke’ is a measure of being able to interpret inferred meaning? Did I just interpret the statement’s own inferred meaning, and in the process make a joke?
My sense of humour is more inclined to the absurd, the surreal, the spontaneously leftfield; I enjoy intelligent wit, wordplay and visual silliness. I can understand the point of most jokes pretty easily but if it doesn’t appeal to my aforementioned sense I may choose not to respond. Understanding the point of a joke doesn’t guarantee I’ll find it funny.
Often I prefer a joke with no ‘point’. Conversely, I have often experienced people not ‘getting’ my own spontaneous humour – is that a deficit then on their part?
36. I find it easy to work out what someone is thinking or feeling just by looking at their face.
As a cartoonist / caricaturist with 50 years intensive practice observing human expression, I have attuned my senses to reading faces and habituated it as a professional skill. I have a good eye for subtle shifts in a face, but that doesn’t mean my assumptions are always correct.
I gauge what I think someone else might be feeling via a combination of inputs, including their facial expression, but I don’t believe that faces are a reliable indicator on their own. Many people regularly smile out of habit, or as a mask, regardless of what they are actually feeling or intending. Many people don’t express through their face at all, for all kinds of reasons – grief, depression, tiredness….autistic overwhelm. My primary gauge is what I sense kinesthetically from the person, their presence, followed quickly by visual input. Sometimes what I see on someone’s face will be incongruent with what I’m interpreting in their body, their vocal tone, and my kinesthetic sense of their ‘energy’, so if I want to check my impressions I will ask clarifying questions, after which it’s up to the other person to decide how honest they want to be.
Also, I sometimes find I have a kinesthetic sense of some aspect of another person’s mood that they’re not conscious of until I ask about it – for instance, an underlying agitation or frustration.
As for ‘knowing’ what another person is thinking – how can anyone assume that? All we can really do is make noises at each other, and hope that some of our signals suggest enough shared meaning that we can pretend some form of understanding. Often we are too quick to satisfy our desire for connection by convincing ourselves we can ‘know’ the contents of another person’s mind.
40. When I was young, I used to enjoy playing games involving pretending with other children.
From ages 7 – 13 I lived in an isolated rural setting, in a small but wide-ranging community, and attended a small one-teacher school of 30 students. I had one best friend, and a couple of peripheral friendships out of demographic necessity, but everyone was dispersed geographically quite far apart. I spent a lot of my time at home or exploring the bush, and was often involved in my own imaginative play alone, especially through drawing & drawing-related play (eg reading comics). In my younger years I collected Matchbox cars, and there were times I shared imaginative play with friends via car play. I also remember enjoying playing ‘cowboy shootouts’ and similar games for the characters & play-acting.
I think it’s relevant that my childhood culture (1970s ‘hippy’ culture) actively encouraged imaginative exploration and creativity as a natural part of life. Also, the ‘hippy’ kids were all exposed to a lot of uncensored adult behaviour (drug-taking, ‘free’ sex etc), so naturally some of our shared play was the typical ‘pretending’ of children mimicking adult behaviour.
I have had a vivid imagination since I was very young, and as a boy I played socially within a very small subset. My environment (rural) enabled me plenty of time to exercise my imagination alone, especially through drawing. As far as I recall, my play with other children was more often one-to-one, or a very small group.
41. I like to collect information about categories of things (e.g. types of car, types of bird, types of train, types of plant, etc.).
As a young boy I actively collected Matchbox cars, Lego sets and comics, in particular Mad Magazine. By the end of the 70s (I was 13) my Mad Magazine collection numbered 300 and included many rare old copies from the 50s and early 60s. Mad Magazine was a huge influence on my drawing development in those years, aside from the satirical humour, each issue contained a collection of different cartoonists, each with a unique style, and I spent endless hours studying each (in those days the artists were of high quality). The categorisations (types) available in comics were limitless – favourite artists, favourite publishers, favourite styles, funny, surreal, political, superhero, historical context etc.
Since adolescence I have collected music, and information about music, over a vast range of genres, but I don’t ‘collect’ in a stereotypical sense: ie I don’t seek out special editions, rare and valuable, signed copies etc. My primary interest is what I can learn from the music itself, the sounds and structures, the individuals who make the music, and how this all feeds back into my own creative musicmaking process. I have an array of diverse instruments, which I enjoy as a personal ‘collection’ – for both their aesthetic qualities and their functionality.
My most recent collecting of information (ongoing) has been Aspergers and autism-related, so I now have a library of reference books and a number of articles on file.
I also enjoy ‘sets’ of things, for the collective ‘set’-ness of them, the whole that they form all together. When I was younger I also collected various unrelated objects that had some sense of antiquity, or a previous era – often mechanically, texturally and aesthetically they were fascinating to me, and I enjoyed just the having of them.
In general I do like categorising and grouping information into subsets, I like filing things and I like making lists. In terms of gathering information: while I’m not a collector of ‘facts’, I particularly like the process of delving deeply into information on a theme (category) that takes my interest.
42. I find it difficult to imagine what it would be like to be someone else.
I don’t know if this statement is derived from the limiting ‘theory-of-mind’ or ‘lack-of-empathy’ autism stereotypes, but I can imagine things from many perspectives. For instance, anxiety is a form of intense imaginative activity, as the mind creates many possible scenarios from many perspectives.
A combination of amplified sensitivities, deep reflection, diverse life experience outside the ‘norm’ & the ability to consider things from many opposing angles has helped me develop a habit of compassion. I understand that there are universal and archetypal experiences (eg suffering) that are common to most humans, so I can usually relate a person’s experience to some aspect of my own. We’re all human, and essentially of the same ‘stuff’.
44. I enjoy social occasions.
If ‘social occasion’ is meaning group activities such as gatherings, parties, celebrations etc then it’s accurate to say that I don’t usually enjoy them and tend to avoid them. I have certainly found ways to enjoy them in the past, but in my older age I have less energy, and less tolerance for the superficiality of most ‘social occasions’. Most social occasions also involve too much ‘noise’ and too many variables, which can lead to sensory overload. These days I am clearer about being able to choose according to my mood, rather than from a sense of social obligation.
45. I find it difficult to work out people’s intentions.
How can anyone really know another’s intentions unless there is clear communication? If I am concerned about someone’s intentions, and they haven’t made them clear, then I will clarify it by asking questions. So I don’t know if that indicates finding it ‘difficult to work out’ or simply having an intelligent response ie don’t make assumptions, and ask the person directly.
Or is this statement referring to ‘intentions’ in the context of people having ‘good or bad’ intentions, and whether I fit the autistic stereotype of being naive and susceptible to manipulation?
47. I enjoy meeting new people.
When I was younger (mid-teens to late-30s) I was often quite gregarious, I was interested in human behaviour and enjoyed meeting new people. Over the last 2 decades I’ve been much less inclined, but I’ve also had to put a lot more energy into my immediate reality, dealing with ongoing depression and years of anxiety coping with the narcissistic abuse of an ex-partner. I have become more selective about the sort of people I want to put my remaining energy towards, and I rarely engage with anyone ‘new’.