A letter to Anne Heggerty ...

Anne Heggerty 

(aka The Governess on ITV's The Chase) 

is currently participating in I'm a Celebrity 2018 on ITV. 

Anne Heggerty via National Autistic Society

As a result of the overwhelmingly positive response to Anne, both in & out of the camp, I muted the idea of 

"A Party for Anne" 
in a tweet to both ITV & the NAS, suggesting an invitee list of later diagnosed autistic women to thank Anne for the positive impact she's having & to show the world who we are.

I know that a party probably sounds like a contradiction in terms for an autistic community & it may be why not a single sole has responded to my suggestion (working hard to overcome my autistic tendency to take this personally) but I still think it's a god idea in principle.

Especially as, for the very same reason, 

the The National Autistic Society is now inviting 

"Messages for Anne"
to be submitted for inclusion in 

"A Book for Anne".

So, in response to that request, this is

"A Letter to Anne".

~0~

Dear Anne

I am writing to you as a fellow autistic woman diagnosed later in life. Aware of your diagnosis from an article about you in the NAS members' magazine, I was really delighted to see that you'd be taking part in I'm a Celebrity &, for the first time in a while, I made an appointment to view from day one.  I have watched religiously every day since (although executive functioning challenges mean I'm usually watching an hour later than most people & having to rewind often!).

I empathise with your struggle in the early couple of days.  Your description of it during your exit interview put me in mind of arriving at our holiday home this year & the children's (& my) initial reaction to it ... although, obviously the two don't literally compare!  We are what I'd term an "autism rich" family ~ there are a few of us & I do what I can to keep us focussed on the positives - but I am painfully aware of the challenges we face trying to get by in situations where we are not always understood or accepted.

Often all we need is a little kindness ... a little patience & time (the two most powerful warriors, according to Leo Tolstoy) ... & one of the things that I've been so reassured & relieved to witness is the kindness you've experienced & so eloquently acknowledged.  

And I was very pleased to see the easy way it appeared campmates would ask about your autism.  I wish more people would do that.  I'd be very happy for people to ask me about how autism affects me & mine so thank you ~ & your fellow campmates ~ for showing such conversations are OK to have.  They help us all understand where we stand & how to help & relate to each other & just be together more successfully. 

I know you were happy to leave the jungle but I, for one, miss you being there ... & I'm gutted we didn't get to hear your letter!  Many of the snippets of insight you shared ~ & had ~ resonated strongly with me & I will miss those "me too" moments.

I hope the transition to the hotel has been easier & significantly more pleasurable than the initial transition into camp.

I'm very much looking forward to the final shows, to see you again, & I hope we all see & hear a lot more of you going forward.  

Many thanks Anne for taking on this challenge.  Out of all the stars in the jungle, you shine the most for me!

An #alsoautistic wellwisher.

~0~

Oh for goodness sake (that wasn't what I actually said but this is a public space) ~ I've been so busy "getting by" that I've missed the deadline ... I didn't know from the original request what the deadline was & I needed time to do this right but it seems, in my case, there wasn't enough patience & time for my needs ... yet another executive functioning failure!

Fudge, as my boys would say.

Publishing anyway ... I hope this Letter to Anne will reach her eventually. 

Action stations! We're in meltdown ...

... but would you recognise one & how would you respond?

A meltdown can be 

a common occurrence for autistics 

& the word quickly becomes an accepted part of the autistic community's language.  

Boom Comic Graphic via Pinterest via 4cp.posthaven.com

Although meltdowns are not exclusive to autistics, the autistic condition & a lack of understanding or accommodation of autism combine to create circumstances that can more frequently trigger them or, even more frequently, fail to recognise & respond appropriately to them. 

But first to distinguish meltdowns from temper tantrums.  
They're NOT the same but they're often confused.  This is a huge issue for autistics & there are many illustrations already in circulation which do a very good job of defining & comparing the two.   

I've replicated one here:  

Tantrum or Meltdown? An Affinity With A

But this post can't end here because this explanation alone implies meltdowns take one form only ... one that equates to unacceptable or bad behaviour (& anyone who's read my article "Autism does not equal bad behaviour" will know my opinion on that).  

No!

Meltdowns can take many forms but 
because of the myth that "autism does equal bad behaviour" they may not always be recognised for what they are.

Why does it matter?

Because how a meltdown ~ or approaching meltdown ~ is responded to by those around them can be the difference between a quick recovery or escalation into somewhere potentially very harmful; the difference between being pulled back from the edge or being pushed over the edge into the abyss. 

Crash Comic Graphic via Pinterest via robertmars.blogspot.com

Reflecting on recent, less obvious or "atypical" meltdowns within our own #autismrich family ~ realising they could very easily have been missed or even dismissed as something less significant ~ has prompted me to capture what a meltdown might be:

Yes, it might be screaming.
It might be shouting.

It might be harming something or someone.

But also, it might be door slamming.

It might be self-injurous (there are many forms).

It might involve withdrawing or hiding away.

It might be curling up tight.
It might be rocking.
It might be physical illness.

It might be running away.

It might be freezing, panic stricken.

It might be losing the ability to speak (even for the usually articulate).
It might be losing the ability to speak coherently.

It might be crying.

It might be in public.

It might be in private.

Whatever & wherever it might be, it IS a release of emotions that have become so overwhelming ~ for whatever reason, or set of reasons ~ that it's impossible to contain them, remain in control or act "normally" any longer. 

Something has had to give for those emotions to be released; for equilibrium & calm to be restored ~ eventually.

  

The jug is overflowing.

 The dam is bursting.

 The volcano is erupting.

 The Creepers are creeping (a Minecraft reference!).

Or, to extend Ellen Notbohm's explanation of autism as being like 
"a Mac in a PC world", an autistic meltdown is 
like the spinning colour wheel of death.

All are accurate analogies.

But irrespective of how a meltdown may manifest, the feelings & cause(s) are as valid, the ability to cope & carry on as compromised & the need for help & understanding as great.

Our own meltdowns may take any of the forms above.   
And some of the more "acceptable" meltdown behaviours may actually help us to prevent, or calm us after, a more "unacceptable" meltdown behaviour.  So shutting down may prevent melting down ... & is certainly part of our recovery post meltdown!  But whatever the form, the function they perform is the same.

So, for these reasons, I'm writing this post & I'm asking: when you hear someone from our community talking about a meltdown, please know they're not talking about a temper tantrum (although, as fellow humans, we can experience those too!) & they're not necessarily talking about unacceptable or bad behaviour, or even behaviour that was visible to ~ or had any adverse impact on ~ anyone or anything else.  

In fact the meltdown may have been harmful (physically &/or mentally) only to the person experiencing it & experienced by them alone, but how a meltdown is responded to is vital to better recovery.

So...

Help Comic Graphic via Pinterest via psicosaludtenerife.com

How can you help & how can we help ourselves?

Understand what the triggers ~ or causes ~ might be: eg sensory overload, information overload, not being listened to or heard or being ignored, being taken advantage of or treated unfairly, being embarrassed, being criticised, being teased & deliberately provoked, being rejected, excluded or isolated, loss, being dumped or cheated on (megga meltdown mayhem!), too many demands, lowered tolerance levels due to heightened anxieties, illness, tiredness or hunger; coping too long with ~ or frequently suffering, or dwelling on past experiences of ~ any of the aforementioned without an opportunity to calm or de-stress or recover.

Recognise that the autistic jug starts more full than the neuro-typical jug so there's less capacity for additional input because our brains are registering & retaining more already.

Recognise the early warning signs & try to avoid escalation to meltdown, maybe by removing that person from the situation, changing the environment or distraction, or allowing space & time for a calming activity, for example.

If meltdown is unavoidable, safety first (for everyone ~ the "meltee" & those around).

Make space for calming &, if possible, offer or direct toward calming solutions (ideally non-verbally) but know a rational response might not be possible so 
be patient & allow time for the meltdown to pass. 
Because it will.

A good time to return to the "Mac in a PC world" analogy: when that spinning colour wheel of death appears you know you have to wait ... you know the wheel will either sort itself out in it's own good time & in it's own methodical way & you know, if it doesn't, there is no other option but to shut down then restart the device (& you can't rush that either).  And even though it's our first instinctive response, you know it won't help to plead with, complain or shout at your device.  You know it won't help to jab every key on the keyboard & click every clickable option on your frozen screen.  You know every key stroke & mouse click your device ignores now will be stored, ready to reek havoc should the spinning wheel of death pass without the need for shut down.  
Yet we still do it!
Don't.  
It doesn't help ~ it makes things worse.

Demonstrate understanding & a desire to help, not blame.  But no solutions to the perceived cause(s) ... we're not in a state to process at this time & we could interpret as criticisms & feel like we're not being listened to.  
Analysis & solutions can come later, but first ...

Post meltdown, we can feel low & shameful about losing control so we benefit from more than the average amount of reassurance, being reminded about & celebrating achievements & strengths.

Consider what could be done differently or avoided next time.

Accept that autistic meltdowns are inevitable in much of the current environment in which we live BUT accept also that the risk of meltdowns can be reduced by: learning to identify & avoid triggers, recognising the early warning signs of an impending meltdown situation & intervening to prevent escalation & developing personalised coping strategies to manage acceptably.

At the same time, let's work together to make our shared environment more accommodating for all.

Above all, be more kind.

For me, sometimes, I still talk too much, say too much, offer solutions (directly & indirectly) in desperate attempts to provide hope.  Even though I know I shouldn't, sometimes I just can't help myself.  Maybe it's a symptom of me nearing my own melting point!  But all it does is make matters worse ... make the "meltee" feel undermined, not listened to, not heard, challenged, criticised, wrong.  I know because they tell me!  So, even though I know what I should do ... & mostly do ... I also know how tough it is to do the right thing.  So I write this not only to help others but to help me too, to remind myself.

I know I help best when I'm simply there ... listening, believing, loving ... & always from the other side of a closed door (they don't want me adding to the shame) ... so I always give them safe space alone ... talking comes later ... hours later if necessary, on their terms in their time.  That's the time for reassurances & solutions if solutions are needed & wanted.  We move on.

If I help appropriately in the moment, I build trust to help constructively after the moment (irrespective of what they might have said about me back in the moment).  

And remember, if you do witness a meltdown (as opposed to a tantrum):

"My child is not giving me a hard time.  

My child is having a hard time."

Unknown 

Or, to adjust for my own perspective:

"I'm not giving you a hard time.

I'm having a hard time."

Me

And this is particularly pertinent as we approach Advent & Christmas as I realise this is the time of year when my own capacity is often reached & often breached.  I can reflect back on real illnesses & the need to withdraw or "shut down" leading up to Christmas, especially in the latter half of life as the demands of work & a family became greater than the demands of my single days when I only had myself to organise.  It's ironic & frustrating as it's a time of year I love but, I realise now, the additional demands & changes to routines take their toll & what may have been naturally occurring recovery times are filled with additional things to do & think about, & seemingly never ending demands from others.  Already the water is trickling from my own dam, the magma is moving underfoot, seeking out the cracks, & the Creepers are waking, ready to creep!

Would you ~ did you ~ recognise it?

In our Autistic Life we Ride Tsunamis | An Affinity With A 

"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.  
___________________________________________________

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.
___________________________________________________

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. 

_____________________________________________________________________________

 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!!
___________________________________________________

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!