"All about me" & theory of mind

All about me! 

That’s how I imagine my behaviour might seem to others, sometimes. 

It’s all about me.
It is ~ but it’s not.  

I mean, I can see how it might appear to be.  I think I can appear egocentric but I’m not egotistic.  I do bring things back to me but not in a boastful, self-important way ~ or that’s not how it’s meant.  In fact, I really have a fairly low opinion of myself, truth be known.  But I’m not here for a boost.  I’m here to give my perspective on a misunderstood, quite complex autistic trait “lacking theory of mind”. 

Lacking theory of mind means it’s really difficult for me to put myself in others’ shoes.  This doesn’t mean I can’t or don’t want to ... just that it’s really difficult.

The autistic brain doesn’t intuitively see things from another’s perspective (something that typically develops from early childhood), so doesn’t intuitively consider or interpret others’ beliefs, intentions, actions & gestures.  As a result, the default position is to relate what others do, say or might be thinking to what we know.  And that often means to ourselves, our own experiences. 

Me in Bahrain in someone else's shoes (literally!)

In other words, we don’t intuitively accept or acknowledge that others think differently ... we may learn that they do but it’s difficult for us to accommodate.  We have what Simon Baron-Cohen describes as mindblindness.

Impacts on us include: to expect others to be thinking the same as us & to know what we’re thinking; to miss deception in others (& so be vulnerable to it); to not easily be able to lie to others (even if it’s the right thing to do to make them feel better, apparently); to misinterpret comments ~ often as criticisms & a tendency to take things personally. 

It happens to me all the time but I’ve learnt to check myself ~ even if I can’t always convince myself that my instinctive response may not be accurate.

And I see it clearly in my angel fish.  

Here’s a very recent example to demonstrate how extreme & really unexpected this mindblindness, or lacking theory of mind, can be:

  One angel fish noticed Textiles didn’t appear on their timetable for the next academic year.  Their reasoning for this is that they must have been really bad at Textiles in the previous year not to be allowed to do it anymore.  Everyone else must have it on their timetable ... it’s just them who doesn’t.  Despite reassurances & evidence to the contrary & suggestions of other possible (and let’s be honest, much more likely) scenarios, the only explanation they truly believed was the “all about me” position ... that they’re not good enough but everyone else is & that’s why they’re the only person in the whole year group not doing Textiles next year.  Basically, they took a school timetabling decision personally.

It’s taken an email from the Textiles teacher to reassure my angel fish of their ability & accept the (obvious even to me) truth that they have not been singled out as being unworthy & that none of the year group have Textiles timetabled next year!

What’s sad about this trait is that it only seems to emerge in negative situations.  There's no “I must be really good at DT to have DT on my timetable next year ... I wonder if anyone else is doing DT”.  No, that scenario never seems to occur.  Or maybe it does but just doesn’t generate the same reaction so is less visible (something to look out for & think about maybe)!

Sadder still is this example demonstrates how “lacking theory of mind” ~ & a tendency to interpret negative situations especially as being “all about me” ~ can directly fuel the “low self esteem” & “low confidence” common in autistics.  In turn, imagine (as I know many can ~ more easily than I) how much effort is needed from carers to stave off self-sabotaging downward spirals of thought, how much energy is expended to just keep moving forward with the mainstream, let alone build sufficient self-belief & confidence to soar. 

A lot of wind needs to be generated, continually, beneath autistic wings.

Wind beneath autistic wings, An Affinity With A

 But back to me, after all this post is all about me: I’ve had to work really hard with a lot of self-talk & sometimes input from others to consider all the other alternatives, the other viewpoints in given situations ... or at least to keep them front of mind, because that “all about me” voice is naggingly persistent & will find a way to drown out other voices if they’re not loud, persistent or convincing enough to overcome it. 

And I can do this now but not always & it’s not always automatic.  
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Examples have included:

You ask me how I am, I think you really want to know & I tell you ... & I may well “over share”.

You say let’s meet for coffee, I think you mean it & I try to arrange it & if it doesn’t happen I think it’s because you didn’t really want to & I wonder why you asked.

Being gullible ~ I won’t be specific for fear of upsetting anyone who may have been complicit!

I see a group of people laughing & I think they’re laughing at me & I dwell on it.

I interrupt you because I’ve misread the cues & thought it was my turn to talk (plus I’m super keen to show I understand & to share my perspective!!).

Social anxiety, generally.

I may have misinterpreted or missed altogether “the signals” ~ if so, I’m so sorry :/.

You won’t ever hear me say “I” instead of “we” or take credit for someone else’s work or idea.

And I share ideas freely, expecting others to give credit where credit is due ~ I don’t think to be cautious.

You might hear me ask if you’re joking or being serious.

I assume you don’t want to know me, include me, involve me unless you specifically do or say otherwise so I’m very unlikely to make the first move.

I start talking mid thought process expecting you to know what I’m talking about.

Logic told me I couldn't be the worst parent ever, even when my child was the only child "not coping" ... but that's the only explanation I had so I just kept trying to be a better & better parent even though they still couldn't cope.

Someone writes something that has nothing to do with me but triggers a train of thought about a situation relating to me.  They write something else & I interpret it as a message to me because of the thoughts the first piece triggered.

If you're not my boss, my teacher, an acknowledged expert or I haven't asked, I may take being told what to do as a criticism.

I’m sorry to say, (too much) alcohol was my crutch in many a social situation.

Other faux pas/situations I’m not yet ready to commit to type ... but one day I might.
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Actually it can be much easier not to make it all about me in some work situations ~ if that’s how I’m expected to think in the role ~ for example, in marketing or customer orientated roles (my background) where it’s part of the job description to consider things from the customer’s perspective.  And because that was the rule (& we autistics like our rules ~ they provide certainty & structure) I did it & I did it extremely well, religiously even, to the exclusion of other viewpoints, such as personal professional gain & workplace politics (the pros & cons of which I may expand upon in a future post!).  For me, the customer genuinely always did come first ... & it was very difficult for me to accept others’ thinking if they hadn’t evidenced the same motivation!

In this, and other situations explicitly relating to others, I can be pragmatism personified, or I suppose detached even (another perceived autistic trait), ie when it’s very clearly not “all about me”.  And, in these situations, I often find myself prompting others to consider the alternative perspectives.  This ability further honed by becoming ever less judgemental, as a consequence of dealing with the adverse effect of inaccurate or unfair judgement.  In some ways, my family & friends are my “customers”.

However, in different circumstances again, I have been guilty of appearing to make others’ situations “all about me”.  In an attempt to demonstrate empathy (a trait assumed lacking in autistics), I’ve often referenced my own comparable experiences.  It’s a genuine attempt to show I understand but being “unusually observant” (yet another trait), I see the suppressed eye rolls & lip bites so I’m always quick to articulate “but it’s not all about me” & verbally pass the discussion baton back to the person I’m attempting to empathise with, albeit inappropriately (according to my basic counselling education, “comparing” is a method of empathising best avoided so you won’t catch me doing this so often any more!).  In my autistic defence, & in my head, relating others’ situations to my own served to process & confirm my understanding, to show I’m listening & to prepare to help ... but I acknowledge this is best achieved through other means!!

It seems to me it’s this lack of theory of mind, & the behaviours or responses generated, which may lead autistics to be misinterpreted by some as being selfish, cold, uncaring, lacking empathy, self-centred, unsociable or socially inappropriate.  But this isn't necessarily the case (or intended).  It’s just we instinctively relate to ourselves, we take things personally, as I’ve explained.

So when people say things like “don’t take things personally” or “it isn’t personal”, to autistics actually, it often is (or feels like it is).  In fact, to quote Kathleen Kelly (Meg Ryan) in You’ve Got Mail (because it always resonates with me):

“What is that ‘It’s not personal’? 

.... It’s personal to me.”

So please don’t criticise me for this (if you were ~ maybe you weren’t!).  I really can’t help it & I have to work pretty hard to adjust my thinking & to accommodate others’ thinking.  And I hope my “all about me” reactions are seen as a genuine response on my part, rather than self-serving, even if they make me prone to gullibility, over sensitivity, paranoia even.

On the plus side, there is no side to me, I don't play mind games & I won't bitch about you (although I might complain ~ at length ~ if I believe I've been unfairly or mis treated) & I will always do my best for my family, my friends, my teams (when working) & people I think I can help. 

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 To help me & other autistics:

Involve me in decisions that affect me.

Be open & honest & clear with me.

Be straight with me.

Be patient.

Say what you mean & mean what you say.

Understand, if I’m not looking you in the eye it’s probably because I’m thinking & processing.

Don't tell me what to do directly (unless you're one of the aforementioned) but depersonalise, so you may talk about what you or someone else does &, if it's relevant, I'll take from that.

Know it IS personal to me (until or unless I can rationalise otherwise).

Know my opinion of myself is not high enough to really be thinking it’s “all about me”.

Lots of positive feedback please!!
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Really, we should just all be kind ~ what benefits us, benefits everyone.

Finally, a care point: I have focussed on only a part of the theory of mind concept & I am no expert.  Theory of mind also links to literal thinking & interpretation & obviously contributes to, & impacts on, the social difficulties of autism & I’ve only really eluded to these.  There are a number of elements of theory of mind that transpire at different stages of typical child development that are delayed or lacking in autistics.  Differences in theory of mind is a key factor in autism.  It can also be lacking in individuals for other reasons but how that manifests & how it may be supported may be different.  For anyone wanting to read more complete texts, here are some links to articles from trusted sources, found on a quick internet search (shortest first!):

Autism & Theory of Mind via Seattle Children's Hospital Autism Blog

Theories of the Autistic Mind via The British Psychological Society's The Psychologist 

Theory of Mind by Tony Attwood via his website

Theory of Mind & Autism: A Review by Simon Baron-Cohen, University of Cambridge

Theory of Mind via Wikipedia

And it's the subject of Simon Baron-Cohen's book, Mindblindness ~ which I haven't read so won't comment on further but it does have some very good reviews!

A note to my children

Find the thing you love to do & do it.

Keep looking until you find it.  Don't settle.

When you find the thing you love to do, you will know it.

You will feel like you.  You will know peace.

I found the thing I love to do only recently.

Doing it feels amazing.

Maybe I appreciate it more because I know the

alternative of being without & a bit of me

wishes I had my time again.

But then I wouldn't know you,

& that love I would never trade.

So I don't regret a thing ... but I do know what

it feels like to find the thing you love to do & do it

& I wish that for each of you.

To feel like you.  To know peace.  To love.

Your loving Mum xxx

A note to my children, An Affinity With A

Awe & Wonder ... Wonder & Awe

This musing was captured & shared by me on social media last week.

Awe & Wonder Thoughts on Autism, An Affinity with A

I've worried since that some might have thought I was going a bit overboard with the awe & wonder bit.

But, in fact, I do often look at my children with awe & wonder.  I often look at the world around with with wonder & awe.  I think I only knew the meaning of a miracle when I met my first child, face to face, for the very first time ... when I was lucky enough to see 3D scans of my second & third, together.   Well, they are miracles to me.  Others will have other miracles ~ miracles will be a very personal thing, I'm sure.

I wonder in awe at the baby who learns to focus, smile, cry, roll & eventually, all being well, walk.  At the bee gathering pollen & the butterfly emerging from a chrysalis, at the earth, the oceans, moon, & stars, at acts of human kindness & at many humankind creations (although not all).

And the more I learn about autism & the autistic brain & how it manifests in so many different ways, the more in awe & wonder of life I become ... the more fascinated I become.  I experience many other emotions too, mind ~ not all positive ~ but this post is about awe & wonder so I will attempt not to distract myself from that!

Autism related or not, I am in awe & wonder often.  

But isn't it wild to think that the human brain is the most complicated object in the known universe (according to Michio Kaku, an American Physicist).  

Which sort of leads me to the original point of my musings of last week which were captured to shine a light on the fact that our general understanding of autism, of neurodiversity, is limited still & that we are all "different, not less" (quoting Temple Grandin) & when difference is understood, accepted & accommodated ~ by which I mean society works in a way that enables all differences to co-exist without prejudice (intended or otherwise) ~ when difference promotes genuine interest, then we've gotten somewhere.

So, yeah, I stand by including awe & wonder.

An' Another Fing ... about Alleviating Anxiety

Last year I took my "other 'arf" to see 

Micky Flanagan's An' Another Fing show.  

It was a birthday present.  

Yes, we went "out out" ~ a really "rare rare" occurrence.  

When I checked in on Facebook I said I was self-medicating laughter.  And, actually, I really was. 

I was medicating for the other 'arf as much as for myself.  For many many reasons ~ as anyone living with autism will understand ~ moments of stress & anxiety can easily & seriously outnumber moments of fun & laughter so I decided to prescribe one huge, hilarious hit of fun. 

In those hours, all anxieties were alleviated.

And as I pondered our motivation for going & the positive impact at the time ~ & expanding on my last post about Accessing School Assessments ~ I realised our going out out illustrated simply why making learning fun ~ or just having fun generally ~ for autistic kids is so necessary.

Some might reasonably respond "everyone likes to have fun" "surely all kids benefit from a fun approach to learning" & some might expect all children to be capable of learning whether it's fun or not.  Some might question why learning needs to be "more fun" for autistic kids for them to access?  Isn't that just pandering to them?  Surely they should just learn to get on with it, like everyone else."

Well the answer lies above.  For me, our experience of going out out is a good analogy that I hope anyone can appreciate.  Autistic kids enter the school gates (assuming they get that far) with already heightened levels of anxiety (even if it doesn't show outwardly).  For all sorts of reasons, their anxiety can very easily & very quickly reach levels that interfere with functioning & inhibit learning (again, even if it doesn't show outwardly). 

Creating a fun environment, making learning truly fun, has the tremendous power to replace the adverse, prohibitive feelings of anxiety, panic & fear with calming, positive feelings of happiness & joy & in this improved state, learning finds a crack of light through which to enter.

It can be the difference between feeling anxious & not.  Fun ~ humour ~ has the power to alleviate anxiety.

Even just trying to touch your ears with the corners of your mouth can make you feel a bit better (although my angel fish have quickly become wise to that particular challenge!).

This is not a new theory.  

I'm merely capturing a personal analogy to explain how & why such an approach to learning has been & is advocated by many autism experts. Here's a quote from Hans Asperger, as an example: 

"These children often show a surprising sensitivity to the personality of the teacher.  They can be taught ... by those who give them true understanding & affection, people who show kindness towards them & yes, humour ...  The teacher's underlying attitude influences, involuntarily & unconsciously, the mood & behaviour of the child."

Hans Asperger Quote via An Affinity With A

And the Pathological Demand Avoidance (PDA) Society talk about it's importance within their online guide for educators ~ see the section headed Humour, Pretending & Role Play.

So, by drawing this parallel I hope I might encourage more to pursue & provide autism-friendly approaches to learning; to consider how they might help someone replace feelings of anxiety with more positive, more helpful feelings. 

Because you can't tell someone to calm down, to stop being anxious ~ just like you can't tell someone to laugh at a joke if it's not funny or have fun if it's not actually their idea of fun.  Well, you can but it probably wouldn't get you very far.

Which prompts further words of warning which, I assume, any good comedian might echo: delivery has to be genuine (they have to care), content has to be relevant to the audience (they must enter, or inhabit, the same world), timing & a well placed pause is crucial (some things take longer to sink in, register & connect) & consistency is key (familiarity is more likely to be rewarded with loyalty & longevity).

Of course, successful learning for autistic children is not solely dependent on good fun & humour ~ it's not just down to the star turn, their content & delivery.  A lot lot else needs to be right right to minimise the risk of, & alleviate, autistic based anxieties ~ & to enable autistic children to access that fun (any fun, in fact).  It's all too easy for them to end up on the sidelines, looking in, watching others have the fun ~ often they need extra assistance to access alongside their peers.

So, from the getting ready & the journey in, arriving at & navigating the venue, the crowds, finding & securing the right seats, the environment, facilities & the ability to see & hear unimpeded to the actions of the wider audience.  All of these are parallels.  And, yes, many non-autistics might be impacted by any of these not being right ~ but many are unlikely to experience extreme, debilitating, panic attack level anxiety.  Alleviating these anxieties ~ abating the freeze, flight or fight response ~ well, that requires everything to be right right.

Of course, such anxieties are not limited to learning & don't disappear on reaching adulthood (although, hopefully, strategies & experience helps individuals to better self-manage over time) but accessing learning has been a recent focus so I've stuck with that as the main anecdote.

An' another fing ~ & this might be the autistic or the cockney in me (or both!) ~ but shouldn't it be 

"An' anuvver fing ..."?

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Creating a fun environment, making learning truly fun, has the tremendous power to replace the adverse, prohibitive feelings of anxiety, panic & fear with calming, positive feelings of happiness & joy & in this improved state, learning finds a crack of light through which to enter.

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HeHeHeHe via Pinterest

Accessing School Assessments with a Sprinkling of Success

Again, this wasn't the next article I was going to post.

In fact I’ve "authored" in my head at least one article a day, every day for the last few weeks ~ on the way home from the school run ~ but each has been deposited in the “action” tray in my mind.  It's leaving me feeling “disabled” in terms of this blog, due solely to the sheer volume of articles I’m desperate to write, conscious I'm not enabling myself to start ~ finding it "easier" to distract myself with more "urgent" tasks & the never ending family oriented to dos (in other words being an autistic mum in an autism rich family).

Which, ironically, links well to the focus of this article, & shows I have absolute empathy (yes, empathy*) with those of my angel fish facing school assessments after half term & so also the need to revise.

I hope the content resonates & proves helpful to others facing similar situations.

Now, these particular angel fish just about manage with the homework they're set.  It takes effort to pick the moment, approach appropriately, inspire & motivate, but we ~ they ~ get there.  Revision is a whole other ball game.  Unlike homework where they're set tasks, revision can be far too conceptual, random, all encompassing to be easily approached or accessed, especially for the autistic brain.  It’s far too easy to keep putting it off ~ to procrastinate ~ as we ruminate on how, what, where & when ... running the very real risk of avoiding altogether or, at best, leaving to the very last minute.  But the after effects of avoiding altogether are not easily born by us.  We are still perfectionists who hate to get things wrong &, worse still, be told we're wrong!  

My angel fish experienced this pain after a recent set of science assessments (a subject they actually enjoy & show aptitude for) which they approached unprepared.  In contrast, their earlier maths assessments, for which they did prepare, were a relative breeze.

So, whilst painful, this was a lesson effectively learnt with these angel fish acknowledging they’d prefer to feel like they did about their maths assessments rather than how they felt (& still feel) about their science assessments.  In other words, they've properly learnt the value of revision!

Now the coral castle door is open it doesn't mean it's any easier to swim through, especially when there's not just one coral corridor but an array of seemingly never ending coral corridors beckoning these nervous fish.  

Thankfully, for those daring enough to explore, along each corridor there are many nuggets of learning to discover, all thoughtfully & creatively produced by their tutors especially for the task of revision.  Collating all these wonderful materials resulted in a rather full lever arch file for each angel fish.  

Assessment Revision Files by An Affinity with A

You can lead an angel fish to water, but .....

Picking up on what worked with their maths revision before, we agreed on a reward programme (angel fish need motivating, full stop!).  They're collecting Pokemon cards just now so, for each revision task completed they receive one Pokemon card (I prepared a separate schedule of what constitutes tasks for each subject based on what revision materials had been provided, e.g. reading, making notecards, watching videos, completing exercises, etc).  

So the scene was set.  I did worry at one point about the time taken to prepare ~ each extra day preparing was one less day available for revision ~ but having experienced their reaction, enthusiasm & willingness to engage (even unprompted) I'm thinking (as I already knew) that preparation was critical & time invested well!

I know I'm going to have to make revision as fun as possible.  Sitting them down with something to read (that they didn't necessarily want to read) would be a slow, painful &, in truth, pretty pointless process.  So, picking up on one aide memoire ~ to choose different rooms for different subjects ~ I took the already very visual food tech' revision & brought it to life a little more, setting them challenges to label the food processor, name the numbered kitchen tools, complete challenges on the blackboard, group things correctly, etc.  Here are some pics.

Original Materials

Kitchen Tools Revision by An Affinity with A

Flavour & Taste Revision by An Affinity with A

Original Materials

 

Egg Types Revision by An Affinity with A

Egg Age Revision by An Affinity with A

Original Materials

 

Food Processor Revision by An Affinity with A

And I'm so delighted with how they responded.  One angel fish announced "this isn't revision, this is fun" almost as if it couldn't possibly count as real revision if it wasn't "not fun" and another angel fish was beside himself with pride for having completed a task "before school even".  
They're actually looking forward to the next tasks...ish. 

Just one problem ~ they're not the only one who'll be working hard at revising!  I did attempt to "invite" another angel fish (with extreme avoidance tendencies) to help prepare some tasks (in the hope they too would absorb some learning ... & I would lighten my self-imposed load) but this angel fish is far too intelligent to be so easily duped & sussed my intentions immediately.

Well, it just goes to show, you can't win 'em all.

Now, we have some revising to do (no doubt leading to an even fuller article action tray)!

* As an aside about "empathy" : it's a popularly held belief that a key characteristic of being autistic is being devoid of empathy.  However, others ~ including autistics ~ would say autistic people can be extremely empathetic.  We can certainly feel unusually deeply & can experience extreme emotions.  So far, for me, courtesy of The Aspie Coach, this is the best succinct description of autistic empathy I've come across ... although I'm of the opinion it's easier for us to recognise others' feelings & emotions if we've felt them for ourselves:

Empathy Explained courtesy of The Aspie Coach via Pinterest