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 original 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 Empathy Quotient test
The EQ Test, also known as the Cambridge Behaviour Scale, was developed by Simon Baron-Cohen & Sally Wheelwright at Cambridge University in 2004. It is a self-report tool (two versions of either 40 or 60 statements) measuring ’empathy’ indicators according to certain ‘scientific’ definitions, and is freely available online. Answers to statements are based on a scale of 4 options: Strongly agree / slightly agree / slightly disagree / strongly disagree.
The tool was designed at a time when there was still a prevailing assumption that autistics (especially Aspergans) were incapable of empathy or emotional awareness – underpinned by the deeper cultural assumption of ’empathy’ (whatever that is) as an index of ‘normal’. In the four years since I completed this ‘test’, there has been an increasingly resonant autistic voice pointing out that intense emotional experience & emotional intelligence are extremely common in autistic experience. I delve more deeply into this here.
My psychologist gave me this test as part of my formal Aspergers diagnosis process, and I requested that I be able to supply additional notes if I found any questions problematic.
Completing this survey was challenging in the context of getting an adult diagnosis, because I have spent decades developing skills around my emotional awareness, and can articulate the subtleties of my emotional experience very clearly – an ability not considered stereotypically ‘autistic’.
Here are some of my responses, completed 1.7.2020.
2. I prefer animals to humans.
It is often said that autistics find animals easier to deal with than humans, because they don’t judge, they don’t talk back, they don’t have expectations (all distinctly human behaviours). I can connect easily with certain animals, but there are plenty of animals I avoid because they’re highly unpredictable or downright dangerous, others that I find intensely irritating. I stopped having pets years ago as I don’t want the additional responsibility (I also disagree with the notion of owning an animal for the purpose of projecting yourself onto it). In terms of human animals, I like humanity in general and a few people in particular, but it seems the majority of people believe it’s ‘normal’ to be selfish, untruthful, manipulative, superficial and pretentious; historically the species continues to behave out of habituated stupidity and fear, so I prefer to withdraw from human engagement most of the time. Overall I prefer solitude to animals or people.
4. I find it difficult to explain to others things that I understand easily, when they don’t understand it first time.
With a statement like this, I would rather know explicitly what the statement is trying to measure. It is also far too broad – my autistic thinking immediately needs an example or context. ‘Understanding’ between people is always a reciprocal responsibility, a matter of communication from both sides.
As a teacher, and as someone who has paid a lot of attention to the mechanisms of process, I developed the skill of explaining things in ways that others can easily access, so I feel that I am good at explaining in that sense. What I find difficult (as in frustrating and tedious) is having to explain myself when other people misconstrue me – usually because they’ve made assumptions or jumped to conclusions without clarifying their own impressions first.
Also, in answer to the statement – given that my perception of reality and existence is intricately coloured by decades of deep reflection, study of philosophy, psychology, creativity and self – my experience of being alive is sometimes so incalculably vast and complex, so overwhelming in scale, that I can only ‘understand’ it myself as a kinesthetic event, a kind of knowing in my nervous system. This perception contains every possible paradox and mystery, and everything that simply can never be known.
So yes, there are some things I find very difficult to explain to others.
6. I really enjoy caring for other people.
I care deeply for my immediate family, and make many small personal sacrifices to demonstrate my care, although I think my efforts are usually too subtle or internal to be noticed. Often I end up feeling distressed because I care so deeply & acutely, so I wouldn’t say that I ‘really enjoy’ it. I feel ‘care’ as an outgrowth of ‘love’, as a verb, an active principle that involves deliberate choices (eg selflessness, honesty, patience), and often has more to do with being willing to explore uncomfortable feelings rather than just enjoyment.
Most human culture is moving too fast, and relying too much on extrovert signals, to notice or appreciate subtlety. If you think that someone isn’t outwardly demonstrating their care in a way that fits your reality, consider the possibility that they may actually be ‘caring’ in profound and complex ways internally. Some people – not only autistics – are quiet, subtle, humble, more gradual in how they communicate ‘care’. Their feelings of care may be so sensorially intense that it’s overwhelming, too ‘big’ to reduce into simpler words or actions.
7. I try to solve my own problems rather than discussing them with others.
Is this about one’s capacity to problem-solve independently, or the capacity to talk about one’s emotional experience with another person? Both are skills and abilities in their own right, and individually complex. And which skills and abilities are utilised depends entirely on context. Is there an unconscious presupposition that discussing one’s problems with another person is a preferred indicator of emotional health?
Most of the time I rely on my own capacities to problem-solve, but I have no inhibitions in discussing my problems with others, if I feel the person is receptive. For many years I found it hard to ask for help in times of crisis, despite being able to confidently articulate my ‘problems’. Over time I learned to gauge how much I could endure on my own, and when to seek help.
8. I find it hard to know what to do in a social situation.
Again, context: a statement like this can be too fraught with variables for an autistic mind like mine. In this statement, ‘social situation’ seems to assume a generic, universally-understood definition, and imply a baseline of ‘normal’.
For me, ‘a social situation’ can be any interaction involving two or more people. I don’t enjoy social situations that involve people talking loudly & voluminously about nothing-in-particular, but that doesn’t mean I don’t ‘know what to do’. Often what I choose to do can be anything from removing myself from the situation to finding a creative way to make the situation more tolerable.
I prefer meaningful communication, with one person at a time, in a calm setting that allows for focused attention and subtlety. I don’t like people asking ‘how are you?’ if they don’t actually want to know. What I feel most awkward about in some social interactions is that generally people don’t want to engage in truthful, sincere, authentic communication.
If I prefer not to engage superficially, does that make me ‘socially disabled’ or ‘socially discerning’?
12. Friendships and relationships are just too difficult, so I tend not to bother with them.
I have less than a handful of enduring friendships; they have endured because these people have accepted me completely as I am, through some of my most raw and vulnerable moments.
After many difficult lover relationships, some of which involved the trauma of separation from my children, I lived alone for 10 years, thinking I was ‘just too hard to live with’. These years showed me how much I prefer my own company, living on my own terms, appreciating my solitude. But any choice in life involves a trade-off of some kind, that is, everything has its Other. I am currently in a relationship that in many ways has been the most challenging and most difficult of any I’ve had; yet my partner & I continue to experience so much deepening and expansion through our challenges that I invest myself in the process of this relationship wholeheartedly. So I ‘bother’ with the relationships that matter to me even if, or because, they are difficult.
As I age I also have less energy available for maintaining friendships if they come with an expectation of regular contact.
14. I often find it difficult to judge if something is rude or polite.
‘Rude’ and ‘polite’ have never been an index I’ve used in judging people’s behaviour. As a boy I was taught that saying ‘please’, ‘sorry’ and ‘thank you’ (with sincerity) are helpful, thoughtful ways for people to treat each other, but also that most social ‘politeness’ is a mask people wear to hide what they really feel.
When we dispense with concepts of ‘rude / polite’ (ie ‘right / wrong’), while retaining a certain sensitivity toward others, interactions are given the opportunity to be more authentic, honest and co-creative. I would rather a person speak their mind, and behave according to what is natural to them. Therefore if I feel someone has somehow breached one of my personal boundaries, then that’s simply what I feel, and I am responsible for it.
Often ‘rudeness’ addresses truthfulness, while ‘politeness’ avoids it.
17. I live life for today rather than the future.
I have trained myself to be particularly mindful of my experience in the present moment, but it is a natural & unavoidable function of a healthy human brain to reflect on past information and project it into future possibilities. My anxious brain seems to be constantly living in the future, an anticipatory state. My patternmaking / sensemaking brain seems to depend entirely on the past for its building.
I’ve had many future projections in my life (aspirations / ideals), but in my current context, and at this late stage of life, my attention is much more on the day-to-day. I think this is partly a resignation to mortality; partly a process of letting go, a surrendering of purpose and ambition; and partly that my mind is so hyper-aware of itself now that each day’s variables require most of my energy. Physical limitations from failing health also narrow my focus to one day at a time. Meanwhile, there are still some aspects of my days that involve careful planning, listmaking, forward thinking and preparedness. Other aspects involve a deliberate surrendering to the moment, as a creative process.
19. I can pick up quickly if someone says one thing but means another.
This is ambiguous for me. If the statement is describing whether semantically I can correctly interpret an indirect communication, I think that depends on context, but I do prefer people to say what they mean, clearly and directly. Alternatively, if the statement is describing whether I can sense when someone is being insincere, untruthful or incongruent, then I definitely agree – most of the time I will feel a dissonance in the person’s manner.
20. I tend to have very strong opinions about morality.
My definition of ‘moral’ has too many connotations of religious suppression to be a useful index for me, but I do have some very strong feelings about certain ethical values, or ways of living well – such as ‘do unto others’. I know I can sometimes have a sharp sense of right and wrong, especially in situations of injustice or hypocrisy; but I have also learned a lot from experiences that many people would consider utterly immoral. My willingness to explore certain taboos in life has helped me develop a much more balanced ‘moral compass’.
22. I find it easy to put myself in somebody else’s shoes.
I don’t know that this works as a measure of ’empathy’. For myself, my capacity to imagine is a combination of amplified sensitivities, deep reflection, diverse life experience far outside the ‘norm’ & the creative ability to think about things from many opposing angles. All these factors have helped me develop a habit of compassionate understanding. I can see that there are many universal and archetypal experiences (eg suffering, struggle, frustration, helplessness) common to most people, so I can easily relate someone else’s experience to some aspect of my own because I have examined my self so deeply. I do not equate this with common definitions of ’empathy’, and tend to think compassionate awareness is a more intelligent (as in deliberately mindful & skillfully attentive) practice.
23. I think that good manners are the most important thing a parent can teach their child.
Nothing could be further from my sensibilities! What are ‘good manners’, and according to whose measure? As with the ‘rude/polite’ index, often ‘good manners’ interfere with authentic communication. I definitely think there are far more important things a parent can teach a child, and these will vary according to context. Among them, I would include: encouraging a child to ask questions, and think for themselves; to trust their gut feelings and intuitions; to be curious about the Mind; to accept that life is not either/or, but a process of possibilities that often contradict each other; to feel comfortable talking about difficult emotions; to take responsibility for their own thoughts & actions. And most of all, show them they are loved. Sensitivity, discernment, humility, yes – but ‘good manners’ be buggered.
24. I like to do things on the spur of the moment.
Too complex. In some things I definitely prefer total spontaneity, in others I definitely prefer predictability and a clear plan, and in some things I prefer a combination of both. Earlier in life I was often much more spontaneous, so I also think age and context are important factors.
30. People often tell me that I am very unpredictable.
The problem with all these ‘people often tell me….’ statements is that mostly the only people I interact with these days are my partner and my kids, so it’s a very small sample. If the question is meaning ‘am I predictable?’ then I think, on the surface, yes I probably appear that way. Internally, there is much that is unpredictable. I will add to this that, if I am free to follow my own impulses spontaneously, without compromising them for the sake of anyone else (eg when I have lived alone, without children or partner to consider), my behaviour is far less predictable (ie more spontaneous).
32. Seeing people cry doesn’t really upset me.
If this statement is trying to gauge whether I ‘have empathy’ or not, then it’s misdirected. I am generally very sensitive to what other people feel, whether they express it openly or not. There are times that I have seemed insensitive (to someone crying) because I’ve been overwhelmed by many feelings simultaneously, and the internal confusion has interfered with my ability to respond freely.
Also, my experiences in psychotherapy / group work / life have shown me that people cry in many different ways, and for many reasons, and that becoming upset (empathy?) when someone is crying isn’t always necessary or desirable. Sometimes crying can be unconsciously habituated or manipulative, or just a passing release of tension in the nervous system. Often just being present for the person crying, without needing to ‘fix’ or change them, is the most useful response you can offer the person. This involves a certain active detachment, but it doesn’t mean lack of feeling or compassion.
39. I am able to make decisions without being influenced by people’s feelings.
When I am alone, there are some decisions (large or small) that are much easier to make because I’m alone – I can think without outside interference, I can weigh things up according to my available resources, I have space to attune to my intuition.
When I’m in company, I often get tangled up in anxious thoughts & contradictory feelings around decisions, because I want the decision-making to somehow include everyone’s needs (usually an impossible expectation).
On the other hand, I have had to make many extremely difficult and life-changing decisions that have absolutely required me to be influenced by other people’s feelings (my children, for instance). There are times when I decide something clearly for myself, but allow for other people’s feelings as part of the process. Other times, it will be other people’s feelings that help galvanise a decision I had already made for myself (sometimes in the opposite direction). I think what is key here is context, and whether I’m alone or in company.
42. I get upset if I see people suffering on news programmes.
This statement bothers me because I want to know why the suffering is limited to television news programmes – firstly it assumes everyone watches TV (I don’t), and why the distinction? If I see human suffering displayed on media, I’m just as likely to get upset at the levels of suffering in the lives of the audience, who are normalising human pain as a spectator event, and the suffering of the culture that projects it through media rather than addressing it.
I don’t like seeing anyone genuinely suffering, on a screen or in immediate reality. I know grief, despair and desolation intimately; how could I not relate? At the same time, I’m of the opinion that suffering is unavoidable in the human experience, and that many people still perpetuate their suffering, rather than find ways to approach it more consciously, or with more creative imagination.
43. Friends usually talk to me about their problems as they say that I am very understanding.
This statement is very true of my previous lives, ie before my current withdrawal from social interaction other than my family. In my first four decades, people from all walks of life (both friends & strangers) often felt they could speak openly with me about themselves and their problems. Even as an adolescent / teenager, there were adults who confided in me about private matters that they wouldn’t otherwise trust to anyone else. I rarely interact enough with friends anymore to gauge this now, although my partner tells me I’m a good listener. I would suggest that my autism actually contributes to this ability – my sensitivities, my capacities for patternmaking, deeper thinking and being present without judgment, all help me formulate insight and understanding when a person is sharing themselves.
46. People sometimes tell me that I have gone too far with teasing.
I tend not to see the point of ‘teasing’ (like ‘flirting’) as a form of communication, and certainly don’t relate to how some people use it habitually (along with other ‘put down’ humour) as a ‘social glue’. However, sometimes my ‘cartoonist mind’ spontaneously produces an amusing image and, in the moment (and in my head), I get carried away by the fun of it; if I’m verbalising it as it’s happening, I forget to consider how the other person might be experiencing it, and unwittingly go ‘too far’ if the other person takes it personally. But ‘teasing’ implies a deliberate action, and not one I engage in.
49. If I see a stranger in a group, I think that it is up to them to make an effort to join in.
My problems with this statement are: Why does a ‘group’ require that everyone ‘join in’? Does ‘join in’ mean ‘behave like everyone else’?
It seems psychologically healthy to allow each individual to make their own choices about how they behave in a group. So I agree that it is ‘up to them’, but the statement seems to imply a judgment or expectation that the stranger comply to someone else’s paradigm, ie. ‘make an effort’.
Perhaps the stranger is already ‘making an effort’ just by being present in the first place. It also says a lot about the collective character of the group itself, as to whether it will accommodate difference or not.
52. I can tune into how someone else feels rapidly and intuitively.
Completely context dependent. What I feel, followed by what I think I feel, is ultimately my own experience. If my nervous system experiences an instantaneous change in the presence of another person, does that mean I’m feeling what they are feeling? I have to give the feeling a name first, and how can I assume that the other person is calling it the same thing? I am very kinesthetically sensitive, so I often have quite immediate ‘body feeling’ impressions of many things, including people. My sense of the other person is usually correct, but I can’t actually confirm this unless I ask clarifying questions, and unless the person is willing (and able) to describe their own feeling in detail. Sometimes I will even sense something they are definitely feeling unconsciously but are unaware of it themselves – I might only feel it as a dissonance in their presence.
Additionally, a lifetime (50+ years) of drawing portraits & caricatures of people has sharpened my observation of facial nuances, and my training in mindfulness and emotional awareness has attuned my senses to acute subtleties of ‘feeling’; in sensory terms, I tend to think that I process these kinesthetic / visual inputs very rapidly, so as to seem intuitive. Does that prove I ‘know’ how someone else feels? It seems a huge assumption to make, and yet many people operate according to that assumption daily, and even consider the delusion to be a desirable index of ‘normal’ (in this case, ‘neurotypical’) interaction.
53. I don’t like to take risks.
As a matter of choice, I don’t like taking risks that put me in physical danger, although I have still done so many times in various ways. There are emotional & psychological risks I continue to take as a deliberate practice, but as the feeling of the risk is intensely uncomfortable, I wouldn’t say I ‘like’ it: I take the risk because it seems appropriate to my growth.
I have taken enormous risks in allowing myself to be vulnerable, in speaking honestly, in revealing my flaws & ignorances, in persisting in the face of devastating life events. In matters of the mind and heart, I embrace the unknowable, the abyss, the shadow, the paradox of existence. In relationship, I take a risk whenever I confront an emotional misunderstanding with reason, voice a doubt or suspicion of the other, or refuse to accept an unhelpful dynamic.
These are all risks of the mind and heart, and are all worth taking; in this context, I prefer the model of initiation, ie a conscious and deliberate movement into the unknown (risk-taking experience) with the intent of deeper psychological transformation. Of course, if I’m immersed in anxious or depressive thinking, I may be less likely to take certain risks because these thinking patterns tend to block spontaneous action.
57. I don’t consciously work out the rules of social situations.
What ‘rules’? This statement is so loaded with assumptions and ambiguity as to be redundant. I try to respond to social situations according to context, with whatever degree of consciousness I can manage in the moment. Every situation is different, and naturally there will be some interactions that involve more or less conscious observation of dynamics, and interpretation of sensory inputs.
I tend to think that most of the assumed ‘rules’ of social interaction are flimsy attempts to distract from the underlying chaos of existence, and generally involve powerplay to some degree or other, as a deeply unconscious survival reflex. If I observe that the ‘rules’ involve dynamics of pretense, competition, power, self-interest, and insincerity, I will tend not to engage, or sometimes I will consciously challenge the assumed dynamic with a more authentic response.
I work out my own ‘rules’ for any given interaction as they are occurring, not because I don’t understand the consensus ‘rules’ but because I perceive them as superficial and have developed a distaste for them. This doesn’t mean I lack observation, or that I have no sense of social boundaries. Of course there are ways of behaving socially that keep things pleasant, agreeable, and innocuous, all of which are generally considered preferable to dissonance. However, I prefer authentic interaction in the moment over prescribed formulas.