Stillness

Many autistic people are said to have non-expressive faces, awkward or non-apparent body language, or a mismatch between their words, and their facial expressions or body language.

My diagnostic report has a reference to my face being relatively non-expressive; that during the interviews I “made only sporadic eye contact and exhibited minimal change in facial expression”.  I found this rather shocking; not the comment about eye contact, obviously, but the comment about my facial expressions, as my own internal sense of these, both during my assessment interviews, and in ordinary life, is that my face is rather animated.  (Perhaps I’d make a better poker player than I give myself credit for, eh?)

However, it seems that my face is not the only thing that has a stillness to it that others notice.  Soon after my diagnosis, my mother mentioned my being autistic to a friend of hers.  She said that her friend had been rather unsurprised and indeed had already thought that I might be, based on something she had seen many years before. 

What was it she had noticed?  She had seen me help lead singing at a Christian conference and noted how still I had stood when on stage.  The irony here is that I would have been actively standing still, so my movements would not be distracting to others in the way that I have found the movements of other singing leaders be distracting for me.

Empathy

How do you display empathy?  How do you recognise empathy when others express it back to you?  If someone mistreats you, do you want someone else to validate your feelings by making ‘there, there’ and ‘I hear you’ noises, and putting an arm around your shoulders (metaphorically, or physically) when you tell them your tale of woe?  Or do you want them to go out and get justice for you?

Autistic people are often thought to not experience empathy.  The reality is that we experience empathy but the way we display it may not be the way you want to receive it…and vice versa.

In my diagnosis report, it says that I do not “demonstrate empathy in a neurotypical fashion” and that I have a “logical, information and task-based approach to relationships, conversations and emotions”.  I was left wondering how non-autistic people typically display empathy.  All I could conclude was, “If all you’re going to do is make ‘there, there’ murmurings at me, but not try to get justice for me, or otherwise fix the (external) cause of my distress, then spare me your ‘empathy’, for you have not deigned to do the work of entering into my experience.”

As it turns out, there are three recognised types of empathy.  The "there, there" type probably falls into the Cognitive Empathy category, while the getting justice type would fall into the Compassionate Empathy category.

The third category is Emotional Empathy, wherein one literally feels the pain another is suffering.  To a certain extent, my mind leaps straight from Cognitive to Compassionate.  I don't believe that literally feeling your pain or sorrow would make my response to you any better.  In fact, it is likely to make it worse as I would get bogged in the morass of sensations instead of actually doing anything useful.

One is supposed to check for danger before rushing in to perform first aid, in order to avoid having two patients.  Similarly, my seeming to bypass the emotional side (at least until I can safely process it) saves you from having to try to rescue me, when you're meant to be the patient.

You can find out more about the three types of empathy here.

Dear Reader, please enlighten me - how do you display, and want to receive, empathy?  I'd like to reduce my chances of committing faux pas.

Friendship

As an autist, I think of trying to make friends as like being at a very large party.  This party has spaces in a large house and even larger grounds – think of a country manor estate, if it helps.

I am in the house with some lovely other people, who can be hard to find as the house has many, many rooms.  Everyone else is outside enjoying the fresh air in the gardens.

I can talk with the people in the gardens…through a window.  But at times I want to talk on a more connected level with them, so I go to a window to get the attention of someone outside.  The person outside tells me to come out the door into the garden, but I am either unable to find the door they are referring to, or I find that the door is locked.

When I try to explain this to the person outside, their reaction tends to be along the lines of asking if I am sure I went to the correct door, or if it were really locked…and suggesting that maybe I should just try again, or push harder…but they do not offer to find a key or try the door themselves in order to enter the house.  Then the person outside wanders off to talk to someone else, leaving me to flail about in the house looking for a key that does not exist.

Eventually I give up and go back to talking with the other lovely people in the house (the ones I have managed to find, at least).  Part of me still wishes that the people outside the house were prepared to do the hard work (that they expect of us in the house) of finding the correct door, or the key, or even entering the house.  But more often than not, the people outside the house do not do this work because they do not feel the need to as most people at the party are outside the house.

This is what friendship with non-autistic (NA) people can feel like – like those of us who are autistic are the ones putting in most of the work to understand and be understood.  It feels like we autists are the ones doing most of this work because our NA friends do not feel the need as keenly due to easily being able to make friends and maintain friendships with other NA people.

And we’re the ones lacking empathy, or with poor communication skills?

Bonus post - Nomenclature - Aspergers vs Autism

Every so often, I'll put up a bonus post in between the regular posts.  These will probably be in response to a question I have received, or when some terminology needs clarification.

Many people have heard of Asperger's and think of it as a separate thing from autism, or that someone with Asperger's is "autistic lite".  You may also have heard the terms "Aspie" or "Asper" - this is the same thing - they're short for Asperger's.

People who were classified as having Asperger's are autistic.  Since the release of the DSM-5 in 2013, Asperger's is no longer recognised as a separate category.

However, you may still hear people refer to themselves or others as having Asperger's, because that's the diagnosis they received at the time.  And of course, you'll see references to Asperger's as the appropriate term in literature published before 2013.  Those who would have previously been classified as having Asperger's would now be classified as being at, or having, Level 1 ASD (ASD-1).

Those like myself at this level generally have symptoms that don't interfere greatly with work, school, relationships, and life in general.  This does not mean that we don't have difficulties!  It just means that our distress in navigating life is at a level that we often go undiagnosed.  Yes, we walk among you. 😉

Eye contact

A common, but neither diagnostic nor universal, characteristic of autistic people is a lack of eye contact, or non-maintenance of eye contact.

Personally, I can make eye contact, and can tell you the eye colours of most people I live or work with.  However, I do not maintain eye contact.  Judging by a relative’s comment when she found out about my diagnosis, I give people the impression that I maintain eye contact, as I will look at people’s faces often enough when conversing with them.

Interestingly enough, I can actually win staring contests; no idea how I'd go against Julie Bishop, though. 😊

So why is a lack of eye contact so prevalent in autistic people?  This varies, but some reasons are:

·       Information overload – if you are someone who maintains eye contact during conversation, think about how much feedback you get from the other person’s eyes.  Now try to imagine getting, say, 10 times the amount of feedback – if you can, try imagining maintaining eye contact with 10 people, simultaneously.  How would you go with mentally processing all that information, all at once, while also holding the conversation? 

·       It is physically tiring.  I find it tiring to look at people’s eyes for any length of time.  It does not matter if the person is taller, shorter, or the same height.  It also does not matter if the person is male or female.

I just find it less tiring for my eyes and my mental processes to watch the mouth of the person I am talking to.  This has the advantages of confirming that the words I am hearing are the words being said, through the shape of the mouth, and getting feedback on expressions that others get from eye contact.

·       It can produce a physical reaction that is not always pleasant, or even neutral.  If I am not prepared for eye contact and am caught off-guard by someone suddenly looking at me in the eyes, it can sometimes feel like that person has tapped or thumped me in the solar plexus with the heel of their hand.  This can happen even when the person is someone I know and with whom I am having an otherwise pleasant conversation.

·       It allows other senses to show how awesome they are.  Much like many blind people have heightened sensitivity when it comes to hearing or touch, by not focusing on visual cues from eye contact, an autistic person may have developed more acute hearing.

So, do not assume that the autistic person is not listening to you simply because they are not making eye contact.  My mother can well attest, with stories from my childhood (of what I'd say in public, to her chagrin), that this is not always the case!  Don't worry, she thinks they're funny stories...now. 😏

Another reason why someone may not make eye contact is cultural.  There are cultures where to make eye contact with someone, particularly with someone in a position of authority, can be viewed as insolence.  So next time you try to insist that someone is ignoring you, disingenuous, or in some way untrustworthy because they do not make or maintain eye contact, just remember that they may actually be autistic, or from a no-eye contact = respect culture (or both! 😀).

“And now I know it is perfectly natural for me not to look at someone when I talk. Those of us with Asperger’s are just not comfortable doing it. In fact, I don’t really understand why it’s considered normal to stare at someone’s eyeballs.” - John Elder Robison

My reasons for a diagnosis

You may wonder what lead to my diagnosis.  Initially I was curious as to whether I am autistic.  But I still didn’t do anything about it for many years.  I was put off by things I had read regarding the process and cost to get a diagnosis.  I also had the idea that since a diagnosis would not change me from being non-autistic into autistic (or vice versa), it would not particularly affect my day-to-day life as a well-functioning adult.

I had read websites that suggested that multiple visits (in the order of up to 10) to a psychiatrist or psychologist would be required, and prices for such visits could be in the order of up to $200 per session.  And on top of that, there was the report itself which can cost the same as a session with the psych.

As it turns out, in the area where I live (south east Queensland) getting a diagnosis was incredibly easy, and much cheaper than I expected.  It took two face-to-face visits plus a report.  I had also found out that Australia’s federal government will subsidise a number of sessions (up to 20 per calendar year during the CoVID-19 pandemic, it has since been scaled back to 10 per year from 1 January 2023) with a psychologist or psychiatrist through our Medicare scheme.  Note that the report normally costs the same as a session, but does not qualify for a subsidy.

To access the Medicare funded sessions, all I required was for my primary care physician to fill in appropriate paperwork.  If your GP has known you for some time, and particularly if you have ever been to them for some other mental health related issue (autism affects the way various mental health conditions present and should be treated) this should not be a problem.

If you are in Australia (and eligible for the federal government subsidy), your larger challenge is probably to find a psych in your area who does the assessment and can fit you into their schedule. However, even that is easier in this era of telehealth and videoconferencing.

Back to how I got from there to here.  One night I read this paper (side note - this paper is a PDF file that will download to your device). I was sitting on the couch in the loungeroom and found myself sobbing (quietly, mind; I didn’t want to wake Other Half who had already gone to bed) as I read the snippets of stories told by the women quoted in the article.  I shared so many of their experiences.

The diagnostic tools have been geared towards picking up the signs in males, and females have been under-diagnosed over the decades.  There are a number of reasons for this, including:

·       females being socialised differently, particularly for those born before autistic behaviour and thought processing was widely known or talked about.  Behaviour that is seen as socially acceptable in boys is often not seen to be acceptable in girls, and vice versa.

·       women’s and girls’ difficulties having been minimised or misdiagnosed as something else – something that is thought to ‘affect women more than men’ such as anxiety or depression.

(It is tragic and ironic that in Australia, women are more likely than men to be diagnosed with depression, anxiety, or PTSD, however those who commit suicide are disproportionately men, to the tune of seven out of nine suicides.  This suggests that just as autism in women is underdiagnosed, so is negative mental health in men; a case of the biases creating no-win situations for anyone.)

It was initially thought that autism was something that only boys had, then as women and girls with more obvious tendencies (i.e. matching those picked up in males) were diagnosed it was thought that the ratio was 10 males to 1 female.  From there it became 4:1, and current thinking is that it is 3:1.  Personally, I suspect that as more girls and women are diagnosed, the ratio will end up close to 1:1.

And so we come to my own trigger for action.  I wanted to be a data point - that very idea may shout to some that I am autistic.  I wanted to give additional weight to how autism can present in women so that others may be more easily diagnosed and assisted as required.

“When doctors, parents, teachers, therapists, even television describe typical spectrum kids, without meaning to, they’re describing typically male spectrum traits — patterns first noticed by observing boys. Only boys. And we aren’t boys. So they miss and mislabel us.” – Jennifer O’Toole, Asperkids

Autism is My Diffability

Towards the end of 2019, in my mid-40s, I had myself clinically assessed to see if I am autistic.  I had watched Rain Man in the late 1980s – my mid-teens - but never thought that the image that Dustin Hoffman projected applied to me (although I did feel some solidarity with his character and envied the character’s savant abilities).

In my 30s I read Donna Williams' autobiography, "Nobody Nowhere" detailing her experience as a woman who was ‘late diagnosed’ (an umbrella term for anyone who isn’t diagnosed until they are essentially an adult) and only was assessed after someone else suggested that she might be.  She talked about things that I recognised in myself.

It still took almost a decade before I decided to find out if I was officially ‘in the club’.

I was delighted to find out that I am, not just that I thought I was.  It means I may legitimately make the claim to be autistic.  It also puts a whole stack of my experiences into context – the puzzle pieces have started to fall into place.

I told my psychologist that despite the official literature, I do not see being autistic as a disorder or a disability (although I recognise that for some it can be).  I see it as a diffability – a different ability.

Autistic, Someone with Autism, Autist – what do I call you?

As the old joke goes, you can start with my name.  However, since humans like categories and labels (and autistic people, in particular, tend to like categories) let’s tackle the labels issue.

Am I autistic, or do I have autism, or am I an autist?  This matter of nomenclature is one of personal choice.  The person or people you are thinking of may differ from your expectation, and from each other, as to which term they prefer.  Please respect their choice.

For myself, I consider myself to be autistic, and am happy with being referred to as an autist.  Despite it being called “Autism Spectrum Disorder” (ASD) I do not see myself as having a ‘disorder’ as that makes it sound like something to be cured.  Newsflash: it is not ‘curable’ any more than being redheaded is ‘curable’ – we are born autistic…and I have yet to meet another autist who wants to be ‘cured’.

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” – Paul Collins

Other autistic people prefer to say that they ‘have autism’ because they do not want people to see their autism as being the totality of who they are as a human being.

Because of my own personal preference, and because it helps me if I am consistent, in this blog I will use ‘autistic people’ or ‘autists’ rather than ‘people with autism’ (and hey, it’s fewer words to type, too).

However, if the person you have in mind can communicate, chances are that they will not mind being asked which term they prefer (assuming they have been assessed).  If you are unsure if they have been assessed, be gentle with how you ask if they have been – they may have a Rain Man image of autistic people in their head, and not identify with that.

What is Autism?

If you're not sure what autism really is or isn't, here are some initial pointers based on what you may have seen portrayed in news reports, stories, movies, and other media.

·       We’re not mad, bad, or sad; we’re different (with thanks to Professor Tony Attwood, a leading Australian scholar and educator in autism, whom I am paraphrasing.  You can find more on his website here: https://mindsandhearts.net/

·       We’re not all male

·       We’re not all reactive or violent. 

·       We don’t all have Mad Skillz with numbers / words / drawing / observation / other activity.

·       We don’t all have hyper-focus on a special interest to the point of being a walking encyclopaedia on that one topic to the exclusion of all others.  Some of us are the kind of walking encyclopaediae you want on your pub quiz team. 😉

·       We don’t all find kissing distasteful because it is ‘wet’ (unlike Rain Man).  Many of us are married; many even have children (gasp).  And many of us enjoy a good snog…and more…with our significant other.

·       We don’t all have problems with eye contact.

·       We don’t all obviously ‘stim’ or ‘sib’ (more on that in this post).

So, if there are all these ‘we don’t all’ statements, is there anything one can say is categorically true for autistic people?

Yes.  And it is:

“If you’ve met one person with autism, you’ve met one person with autism.” – Dr Stephen Shore.

In other words, just because the person you're thinking of doesn't act like Rain Man (or any other autistic person you've seen in the media) it doesn't mean that they are not autistic.

We do have tendencies.  Many of us will display some of the behaviours listed above.  Most will not display all of them.  And this is where the confusion can enter.

A diagnosis of autism is based on the criteria given in the American Psychiatric Association's Diagnostic and Statistical Manual, Fifth Edition (DSM-5).  (No, I do not know why other countries all use this manual.  I assume it makes it easier for psychiatrists and psychologists the world over to agree on whether someone has a particular mental condition, and hey, why reinvent the wheel).

You can find the diagnostic criteria here: https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

In this blog I will discuss tendencies, not hard and fast conditions.  Your autistic family member, friend, colleague, or yourself, may or may not enjoy any particular characteristic.  Autism is a spectrum and, as the saying goes, your mileage may vary.

Out of necessity, I will primarily describe my own experience, but if I can shed light more broadly on a tendency or characteristic, I will do so.  If you would like to know more about something, please feel free to (respectfully) ask.  And if you believe that I have something incorrect, please let me know - I do not wish to add to the misinformation available.

"I do not suffer from Autism, but I do suffer from the way you treat me." - Tyler Durdin

We're not all Rain Main

What comes to mind when you hear that someone ‘has autism’ or ‘is autistic’?  Does an image of a male, unable to communicate with others, and possibly prone to violent outbursts of temper or temper tantrums, spring to mind?  Do you automatically think of Dustin Hoffman in Rain Man; speed counting, spouting random facts, and describing a kiss as ‘wet’?

It is estimated that, depending on where you live, and how well people are diagnosed, the autistic community is approximately 1 - 2% of the population.  That is the equivalent of the proportion of redheads in a generally Caucasian population (obviously, certain countries have a higher proportion of redheads, while others have lower proportions.)

"Autism is as much a part of humanity as is the capacity to dream." - Kathleen Seidel

This blog is an attempt to dispel some myths about autism, and assist the non-autistic person to understand the world of autists, particularly those who are ‘high functioning’.  Some readers may come to wonder whether a family member or friend is autistic.  Some may realise that they themselves could be too.