JABADAO: A Playful World

I love learning. I just find it interesting discovering new things - sometimes the "whyness" of them is fascinating, or their implications; sometimes it's just pleasing to know a thing I didn't know before. Bees spit at their hive-mates in hot weather (maybe that's what our resident loft-bees have been up to - they seem to be thriving and exceptionally noisy this year!). There was one train journey with 42 different fares from London to Birmingham. In 2016 trips on the London Underground took on average 4 times longer for wheelchair users.

But I digress. I had some lovely opportunities for learning last week and I know no better way to process than by writing a blog post, so here you go!

A Playful World Blog

Running a session for colleagues is a great excuse to reignite my Jabadao-brain and I spent a good couple of hours lost to the world, mostly in avid consumption of this delicious blog from cover to cover (as it were).

A Playful World is a mother's account of her baby daughter's developmental movement from birth to about 18 months, complete with the games they found together, gorgeous clips of video, excerpts from theory/research and insights from observation and participation. I couldn't leave it until I'd finished the lot (oops - another late night!).

If you have any interest in developmental movement and Developmental Movement Play I couldn't recommend a visit more, and if you have an hour and a half you can get through it all! It's a great demonstration of all the things we touch on when I try and introduce people to Developmental Movement Play but don't have the time or the experience or the developmentally-appropriate bodies to hand.

How do you climb if your body can't?

It uses a typically developing body which may or may not show some differences to bodies you and I may be playing with, but the principles of the play - finding games, enjoying what is happening right now, having awareness of what might be trying to happen and conversing simply as two bodies - remain the same. As you will have heard me say if you've ever been unfortunate enough to hear me on the topic of DMP, all bodies are programmed with the same desires and map for movement, from the least mobile to the most. It may be that you spend months, years or a lifetime playing in the early snapshots of developmental movement or it may be that you hurtle through (which is not a goal and can bring challenges of its own), but all bodies long to have meaningful conversation where they are, and to run and to climb.

You would never guess how much is
learnt through tummy play!

The development of our movement supports the development of our senses and cognition: not just proprioception and vestibulation, but vision and touch which are the stepping stones to writing and reading, and interoception (vital if you're ever going to toilet train or look after yourself independently, feed and water yourself at the appropriate times). Our movement development from day one to at least 12 years of age also teaches us science through experimentation and exploration, and inquistiveness. It teaches us perseverance, achievement found through playful struggle and so much more. When joined by helpful, informed, playful adults it brings us the foundations of interaction, conversation, negotiation, shared attention and the joy of sharing space, sharing achievements and sharing life.

A Playful World explores the joys and the challenges of providing for Developmental Movement Play and shows beautifully the theory in practice with ideas, inspiration and a really cute baby!

An excerpt from the first entry:

One of the things I have noticed in these early few days is how much Ruby has enjoyed opportunities to be hanging upside down, and on her tummy right from day one. 

Hanging forward over a helpful adults hand or knee is her position of choice... 

A little theory…

...On a physical level, movement that seeks to establish stability is the most basic human movement and the cornerstone for our physical development. The development of stability takes place in direct relationship with the force of gravity- the gentle and constant force that helps to build bone density and muscle strength.

Physical Development

The organisation and reproduction of movement doesn’t stem, as you might expect from the motor cortex part of the brain. Our movements are directed from the sensory cortex. When we first decide to perform an action we first recall a ‘sensory engram’ created through past repetitions of that particular movement. We remember (in sensation) what it felt like, then our motor systems reproduce the remembered sequence of sensation laid down in that engram… We need to pay equal attention to sensation as well as movement, therefore, if we want to work in depth and detail with the body as a source of learning- enabling our bodies to dance with internal sensation is every bit as important as learning to read and write… we must practice tuning into sensation as a route to using our body thinking processes.

Hopping Home Backwards

Why is this interesting to me…Holding Ruby in this way, and playing with her upside down, from day one, I was often met with ‘watch her little neck’, ‘You’ll make her sick’, ‘I wouldn’t do that, I’d drop them.’

Even though I knew ‘the theory’, I was doing the same as every new parent and muddling through, finding the ways to be with Ruby. Following her lead, and ignoring the voices around me led us to being upside down- so that is where we wallowed.

Most parents will naturally rock babies and children- which is working with the same sensations as being upside down & playing with gravity. Some babies will always indulge in going further than you might think.
When I think about it she has been upside down for the last few months so being up-right all the time must seem strange, why wouldn’t she be happy there!

The second post, Games played in the first week, gives some really early developmental play ideas, and the third, So much more than just feeding or sleeping, is a reminder of what is happening and trying to happen in the really early snapshots of development as well as a snippet of theory and some of the challenges of living in our culture. I will restrain myself from summarising the rest of the blog post by post, but do go and explore: it's a veritable treasure trove!

And for thoughts about how this translates with bodies that move differently, visit the Jabadao website or search for Jabadao on YouTube for a couple more videos of The Tig...

Sensory Self Care Saturdays

On Saturdays I roll out all the coping strategies.  Every Saturday is a self-care Saturday. They're not necessarily the same every week, but some of the current favourites (I won't list the negative ones...) are walks in the countryside, cuddles with the Piggy Peggies and painting by numbers. Today as you can tell by the blogging activity, writing has been one, as has seeing a friend.

I've written before about how sensory experiences can help with my wellbeing (here is a good place to start) and because one of the aspects about my autism that I get asked about most frequently is sensory needs, I thought I'd give a window on one of my coping tools of today.

I had a shower.

Sounds simple, but let me see if I can give you an idea of how I had a shower and what the shower did for me.

Before I had my shower I stayed in bed. Usually my self-care Saturday begins with a lie-in, followed by pilates - just the ticket (combined with Friday night yoga!) to getting back in line with myself. This was a hard week though, and Friday was difficult and included bathroom floor time for lunch, yippee. I have learnt that it is both survivable and at times beneficial to follow my body's hints that departure from routine would be wise. I cancelled pilates and stayed in bed. For ages. The weight of the duvet(s) gives wonderful proprioceptive feedback to the whole body and savouring the experience nourished me.

When I had finished duvet-ing I took the luxury of leaving my contact lenses out and showering with the light on.* I'm very short-sighted so this transforms my sensory experience: my eyes focus on the water cascading immediately before them, glistening in the light - sparklewater! (see also. sun on the sea or a river...)

I had no time limit on my shower; no deadline for leaving the house, no stressful event to prepare for later. I closed my eyes and tipped my head back, focusing on the sensation as the water woke my scalp and face. Nice and warm - bed temperature eases the transition on the body... calm. Tappy tappy touch dancing on my skin.

I have my phone set to play "My Mix" on YouTube - no stress of deciding what playlist I want to listen to, no decision making, but music that I like because it's made from my playlists.

I turn around to join the sparklewater again and become absorbed in the way the shadows of the water drops play on the white bathtub if I shake my hands and move my fingers.

Eventually I move on to wash my hair and myself, with familiar scents and an unchanging routine. When I start to overheat I know I've been there long enough and I share a last few moments with the sparklewater before I say goodbye. My shower has a five-second delay on its "stop" button - this Godsend makes the transition more bearable. And I know I can come again soon. I am so very grateful that I am privileged enough to be able to access this form of self care: physically, culturally, financially.

Photos just don't compare.
Go and try it for yourself if you can.

*It's funny, because it's there every day, the sparklewater, but it's a special treat to see it. My contacts give me so much (I cannot focus beyond about 20cm without them and I have much better vision than with glasses, not to mention they are so much simpler, especially in my job!) but in entering the world of the distance-seers I lose the beauty of the morning sparklewater. On weekdays I also shower with the light off because dimmer light is more calming for me and our bathroom fan makes an unholy racket too, and I need to retain all the calmness I can on schooldays!

Stigma: Mental Health Awareness Week 2019

I thought I'd address stigma as that is obviously one of the main aims of Mental Health Awareness Week: to get people talking and reduce stigma, to remind people that "people with a mental health problem" are just people (most of us will experience some aspect of trouble with our mental health at some point in our life), to help reduce feelings of shame and isolation.

As I pointed out earlier, I write about mental health on here because it is something that closely ties in with my autism and a large part of my life recently has been managing these. I consider myself pretty understanding of issues concerned with mental health, I try and educate myself on how different aspects affect different people, I try and be a good friend. I will happily fight for other people's needs and increasingly voice my own on occasion and I will shout (metaphorically) about whatever is needed to reduce stigma.

So what should I post as a special for Mental Health Awareness Week? It would be appropriate to write a big reveal of my whole mental health story, of a condition that desperately needs people to do just that. But it turns out I, the inclusive, mental-health-aware person, have too much stigma. I still have too much shame to tell the world the less palatable truth about the ins and outs of trying to live with and recover from my particular brand of Brian. It's fine if it's someone else, but the fact that I can't own up to my own truth displays a level of stigma I don't care to be associated with.

Because I like to make people happy and to reinforce to myself the positive aspects of life and recovery I tend to make sure I end on a positive when I'm writing: the positive coping strategies I've used, the fact that it's OK to have difficult times, the silver lining to the cloud. This is a good thing, and it's important to highlight hope because it saves us, but it might leave you with a false image of me as a super-well-adjusted person winning at living with and recovering from mental health problems. I still have shame. I still cry on bathroom floors. I still use bad coping mechanisms. I still hide, so this is a bit of a non-post really.

But in usual style I will come round to the positive at the end. My new GP gave me a beautiful nugget this week. She is fab and seems intent on supporting me as I carry on post-discharge. She asked about things I do to help when I'm having a difficult time and I ended up explaining as I have to many people before "I am the queen of positive coping strategies. I have them coming out of my ears (metaphorically). And yet we're still here".

And where would you be if you didn't have them?

Hm, touché my friend.

(I'm pretty sure others have pointed this out before - my favourite Welsh Peggy for certain! - but for some reason it hit the spot at that moment). It still leaves me wondering where to go when I've used every tool in the book and still need the oh-so-effective maladaptive strategies, but at least I have strategies to get me this far. And re. my last post, just because I'm where I am right now doesn't mean I will be forever.

Maybe I'll tell my story another year.

Accepting Today

Different days are good for different things.

Just because you can’t do something today doesn’t mean it will always be like that*. When I feel like I can’t do something, I can’t imagine ever feeling any different about it: it is absolutely my truth. But that’s not true. I am finding that if I let myself not do the thing, there often comes a time when I feel able or even willing, to do the thing. That time often comes far sooner than I expect, and I suspect it is related to accepting my needs in the moment and giving myself the freedom to do or not do as is best each moment.

The more I pressurise myself to do something, the more I cannot do it. It is more than resistance I feel: an impossibility. I am scared, feeling almost literally petrified - if I must do the thing, there is no way out, no option or safety net if for some reason I fail. I get caught in the dilemma of “I can’t do the thing and I can’t not do the thing” and this is when my brain implodes and off I go into threat system (fight/flight/freeze - I am a freezer, hence “petrified”). Acceptance is an exit from the dilemma that leads to crisis.

Actually it turns out that whatever I can do today may not be the same as what I will be able to do tomorrow, and it may not be the same as what I could do yesterday.

And that is OK.

Some days I can use all my
tools to make a moment of OK

Some days I can’t talk but I can write. Other days I can seek out a friend to help me.

Some days I can read but I can’t think. Some days I can think but I can’t read!

Some days I can’t stop thinking but I can dance.

Some days I can’t dance but I can wrap myself in a blanket.

Some days I can’t eat; other days I can’t stop eating. Some days I can be balanced.

Some days I can’t leave the house but I can support a friend over the internet.

Some days I can push myself; some days I push too far. Some days I can show myself compassion.

And that is OK.

Some days I can play upside down!

Every day (and moment, because these states rarely last a full day!) is different and every day is a part of my life that I can choose to accept, whether or not it’s what I hoped or planned for. When I choose to accept my truthful state of being regardless of how I might be inclined to judge it and of how it looks to other people (Although please take note - it really does make a difference if those around you are accepting too. It is an exhausting fight to accept the unwanted sides of your life), I tend to have a better state of wellbeing and a higher probability of positive change.

I dare you to give it a go: try being kind to yourself instead of beating yourself up. Cut yourself some slack, listen to your body and believe what it tells you for once - it may just be right.

*A couple of disclaimers here:

1. I am purely talking about psychological “being able” to do things here: having limits to physical ability to do things is another matter entirely and probably approached in a completely different way. Sometimes my psychological “not being able” to physically stops me from being able to achieve the activity; other times I could theoretically do the thing but I know that it is not a good idea to. I am working on categorising this as a “can’t” to combat the very powerful “should”s in my Brian!

2. This does not mean that I never challenge myself, that I “let myself off the hook”, stagnate or gradually shrink my life to a sad place, although I do sometimes miss out on things I would like to have done. On the contrary, experience has shown me that through accepting when I can’t, I actually have more occasions when I feel able to do more than expected, or I feel more able to take those opportunities or risks because I know I have a safety net or an option for “failure”. I am also more likely to enjoy and be successful at the things that I do do. I am more likely to push myself on the things that matter rather than indiscriminately spending my efforts trying to do everything including things that are potentially damaging, or bring difficulty with no benefit.

Prosopagnosia: Guess Who?

Before I hit you with the wordy bits I shall lure you in with an entertaining (or what could have been socially mortifying, had I not been so conditioned by a lifetime of social ineptitude as to tread with great caution and a good dose of pretending!) tale of one of those moments where the usually-ignorable non-functionality of my autistic brain hit me round the head like a wet salmon (I'm making an assumption here: it is not an experience I have actually shared).

Now with all my work shenanigans I have run into HR and OH (Occupational Health) a couple of times, in the nicest possible of ways. Work are incredibly supportive of me and as accommodating as they can be. I met once last year with the company's OH advisor, and have had a number of meetings (three or four) with their HR manager who is based on our premises one day a week.

My latest meeting with HR led to my second meeting with OH, less than two weeks later. Here comes the amusing part.

I trundled off to my OH meeting as planned at premises on the other side of town, and reported to the receptionist who directed me to wait to be collected. Now previously to this meeting I had been trying to remember the OH advisor and her appearance. This was without a whole lot of luck due to only having met her once. A remotely familiar face appeared at the door, reporting to an invisible person "It is Square Peggy!" She called me through and the invisible person became visible: a person I had never seen before. The familiar face offered hot drinks and I thought that perhaps this new lady was coming too. (By this point I had already nearly followed the familiar face into the kitchen before realising she was making the drinks not leading me to the meeting!) It was only when the unfamiliar face directed me to the room at the end of the corridor and the familiar face did not follow, that I managed to put together the facts: the familiar face was HR (who I had met with for a full hour just the previous week and pass in the corridor most weeks) and the one I had "never seen before" was OH. Very glad I had judiciously remained silent and just followed people around until I knew what was expected of me!

Prosopagnosia, also known as "face blindness", is the inability to recognise faces. Face blindness often affects people from birth and is usually a problem a person has for most or all of their life. It can have a severe impact on everyday life (see below). Many people with prosopagnosia aren't able to recognise family members, partners or friends. They may cope by using alternative strategies to recognise people, such as remembering the way they walk, or their hairstyle, voice or clothing. But these types of compensation strategies don't always work, particularly when a person with prosopagnosia meets someone out of context, at a place or time they're not used to seeing that person.

The impact of prosopagnosia
A person with prosopagnosia may avoid social interaction and develop social anxiety disorder (an overwhelming fear of social situations). They may also have difficulty forming relationships or experience problems with their career. Episodes of depression aren't uncommon. Some people with prosopagnosia are unable to recognise certain facial expressions, judge a person's age or gender, or follow a person's gaze. Others may not even recognise their own face in the mirror or in photos. Prosopagnosia can affect a person's ability to recognise objects, such as places or cars. Many people also have difficulty navigating. This can involve an inability to process angles or distance, or problems remembering places and landmarks. Following the plot of films or television programmes can be almost impossible for someone with prosopagnosia because characters aren't recognisable. Someone with prosopagnosia may worry that they appear rude or disinterested when they fail to recognise a person.

https://www.nhs.uk/conditions/face-blindness/ (NHS)

I've always known I'm not great at remembering who people are, but I only heard of prosopagnosia some time after my autism diagnosis. Even then, I didn't (and still don't, really) consider that I meet the criteria for claiming I have the condition, but it is certainly a term that helps me to understand and accept some of my social differences and difficulties.

If I had discovered the previous and following descriptions of prosopagnosia earlier on, perhaps I would have realised its relevance to my life experiences rather than assuming that because I recognise myself and people close to me, I am not affected by prosopagnosia.

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces. Prosopagnosia is also known as face blindness or facial agnosia. The term prosopagnosia comes from the Greek words for “face” and “lack of knowledge.” Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces, while still others may not even be able to distinguish a face as being different from an object. Some people with the disorder are unable to recognize their own face. Prosopagnosia is not related to memory dysfunction, memory loss, impaired vision, or learning disabilities. Prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory. Prosopagnosia can result from stroke, traumatic brain injury, or certain neurodegenerative diseases. In some cases it is a congenital disorder, present at birth in the absence of any brain damage. Congenital prosopagnosia appears to run in families, which makes it likely to be the result of a genetic mutation or deletion. Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development.
https://www.ninds.nih.gov/Disorders/All-Disorders/Prosopagnosia-Information-Page (National Institute of Neurological Disorders and Stroke, US) emphasis added.

Since finding out more about the compensations and adaptions made by people with prosopagnosia and the spectrum of its presentation, much light has been shed for me on experiences that I would previously have chalked up to some lack, failing or inadequacy (read here "stupidity") on my part.

How are they not the same person??

I think these two look the same. But Mr Peggy has just
informed me they are the same two as those two in the
tent! And laughed uproariously at my baffled response to
all of those facts.

The story I recounted above was a particularly striking occasion for me, but the confusion and potential for social error has been a recurring theme throughout my life. I have always been embarrassed by how long it takes me to learn people's names in a social circle or new job. When meeting several people at once I often end up with pairs whom I can't differentiate (I either think they're the same person or I know they are one of two but don't know which). I have worked in my current job for three years and there are colleagues whose names I am still not certain of. I drive Mr Peggy mad by constantly demanding to know which character is which, or why they are acting as they are (because I have got them mixed up) in TV or films.
 

No, no, and no. That is all.

I am confounded when people change their hair because I use that as an identifying feature. My natural inclination is to use clothing, but people are inconsiderate enough to change this regularly so if I will see them for more than one day I endeavour to find things that identify them other than clothing: hair, someone they remind me of, mannerisms/my over-all impression of their body including height, shape, movement patterns, sound patterns. I also distinguish by features of association rather than sensory recognition, so my attempts at identification employ a whole variety of techniques I have developed to mask my uselessness at recognising people: "Mary... is she the one from Bigtown, who knows Claire and used to be a pharmacist, with straight grey hair that wears old lady perfume and horrible cardigans with wobbly buttons?"

Context is a massive help too, as demonstrated by the OH story. In the context of my regular work premises (particularly on the correct corridor) I would recognise HR lady immediately, but somewhere else I was put right off the scent and couldn't work out who anybody was. It could have been very embarrassing. Sometimes I ignore or give a blanket response to people I meet out of context: work people outside of work look different and I may not realise who they are until they have left. I was once trying to add a Peggy from dancing as a Facebook friend and declared to her that I couldn't find her: none of the people with her name were her. Of course she was the very first person on the search results, but her hair was down and possibly a different colour. Oops!

I don't introduce people to each other, partly because I forget that's what you're meant to do, but also because I am not confident that I will get the right names. I have asked Mr Peggy countless times on the way home after church "was I supposed to know that person?" after standing next to him pretending to partake in conversation for half an hour...

Oh, and sometimes it works the opposite way too: because I'm so aware that I don't recognise people and might ignore them, I begin to over-recognise and think that random people are people I know! The problem really is that everybody looks too much alike. Definitely no tmy brain distinguishing them...

I've heard that prosopagnosia may be linked to autism spectrum disorder - is this true?
It is true that many people with autism spectrum disorder also experience face recognition difficulties. Problems with face-processing have also been reported in other developmental disorders such as Williams' syndrome and Turner's syndrome. There are various theories concerned with this pattern of presentation, and some researchers believe that the face recognition impairment can be attributed to a lack of social interest in faces, and others that perceptual-processing strategy or impaired visuo-spatial skills may be the critical factor. However, while some individuals with prosopagnosia report severe social consequences resulting from their face recognition difficulties, these are not necessarily an indicator of a concurrent neuro-developmental disorder. On the contrary, there have been reports of misdiagnosis of high-functioning autism when the underlying issue is prosopagnosia alone. Importantly, many people with developmental prosopagnosia do not fulfil the diagnostic criteria of autism spectrum disorder, confirming the independence of the two disorders.
https://prosopagnosiaresearch.org/index/information (Centre for Face Processing Disorders, Bournemounth University)

So, we know the two conditions often coincide, but they also present independently of each other. For me, I would say that any of the three types of theory mentioned here could play a part on my difficulty with recognising faces. Although I do not have a complete lack of social interest in faces, I have long observed that I do not tend to look much at faces as much as others do, and when I do it is often at the mouth to help me process speech, rather than the eyes or face as a whole. It would be interesting to find out whether my perceptual-processing strategies or visuo-spatial skills were related.

So there you go: an introduction to prosopagnosia and perhaps to the milder end of its spectrum where I suspect I may fall. Here's to understanding and accepting my differences and not being ashamed or afraid to admit them: it's actually much less embarrassing to say to people "I have a condition that means I don't recognise faces very well so I will probably forget who you are/I'm sorry if I've already met you" etc than to pretend you know and get in a pickle. I've done it once or twice and hope to get better at explaining myself to avoid the social misunderstandings that lead to me looking rude or like I don't want to know people. "Can you remind me of when/where we met?" "What were we talking about last time I saw you?" "I have a condition that means I find it hard to connect faces"

"Hold on a second! Sorry but I haven't a clue who you are!"

When ASC becomes ASD: do I need help?

Although I technically class as having a disability, I don't tend to consider myself as disabled. Generally speaking I am well-enough adapted to function in mainstream life without my autism spectrum condition disabling me significantly. I know my strengths and weaknesses, I no longer feel that I must participate in situations I find especially difficult and I am surrounded by people (family, friends and colleagues) who understand me enough to allow me to function my best and partake in full time work, leisure activities and as much socialising as I require.

Recently it was suggested that I may find it beneficial to have some kind of advocate or support person to help me in certain situations such as medical appointments. I took this as very caring overdramatisation (definitely a word, if you were wondering), along with many of the other things that were said at that time. People who care about me and want the best for me but take things a bit too far.

As I reflected I realised a part of my mind knew they were right about many of the things, but the uppermost part - the poorly part - disagreed. They suggested a person to support me again. I considered the idea enough to mention it to family members who very sensibly didn't take one "side" or the other, and merely allowed conversation around the matter.

You see, I have autism and a mental health condition, but I am highly functioning. I am fiercely independent and a perfectionist. I have always been a high achiever; someone who doesn't need help. This now means in my head that I don't deserve help, I am not eligible for help and that I am being greedy, wasting people's time and resources and being attention-seeking if I accept (or, perish the though, ask for) help. And if I tried asking once and was rejected, then no chance! And anyway, I've had loads of help for my mental health and my workplace go above and beyond to support me and let me perform to my potential.

Until yesterday.

I've had a recent health blip related to my mental health. I asked for help just before I wasn't able to any more, and then my brain went to the place where it didn't want any help. Everybody had stepped into action but I didn't want it. They were all looking after me when I couldn't do that for myself, and I had a follow-up appointment yesterday when things had evened out somewhat health-wise.

I was on a high when I came out: the doctor was happy for me to be working because I'd told her I felt better, my tests had improved. In fact, she said that perhaps I'd had a virus the previous week accounting for my symptoms. Yippee! Back to normal just like I wanted.

But half an hour later I found myself in tears. I realised my colleagues were absolutely right. She hadn't asked any of the right questions, and because of that I hadn't given her the right information. I didn't know how to tell her, or correct her mistakes, or question her conclusions. I didn't even process that she had got it so wrong until after that. When the people that know me - Mr Peggy, work Peggies, CMHT Peggies, urgent care practitioner Peggies and even mental health charity Peggies - are all concerned, that should make me question the judgment of one GP who gives a different opinion. I let her tell me it was all fine. That's what my sick brain wanted to hear anyway - it will have a field day with that. But there's a part of me somewhere that wants to be well, and if it saw this happening to someone else it would shout, and shout loudly.

She was right in a way: I am genuinely feeling better and I am genuinely fit to be at work, but she was not right about the rest of it and I did not have the processing capacity or the communication and social skills to address that.

So I come to conclude that perhaps I am more "disabled" than I thought. Maybe I need some help.

I'm so thankful I have such wonderful Peggies looking out for me

I'm not 100% convinced so if anyone has experience of using an advocate or somebody to help them with navigating difficult situations, (eg. helping them to identify and communicate what is in their head and to work out confusing questions about recovery, work, autism and mental health) please get in touch - I'd love to hear from you about how it worked, what worked, what didn't etc etc.

Theory of Mind

This week I have been pondering Theory of Mind. And I started reading research papers and it got interesting. What I found was news to me, so I thought it may well be news to you, too!

If you want to skip to the interesting bit, you can find a great paper which brings together, and of course references, a variety of studies into the area here. My comments are rather simplistic and not particularly well-formed or concise so I would recommend reading it if you are interested (It's only 9 pages and you can just read the intro and discussion if you like!). Or a Google search for "theory of mind high functioning" or similar will yield all the lovely papers and articles I devoured before writing this!

Scroll down for my thoughts on the research or start here for the whole story of my exploration.

So if you know anything much about autism you will have heard that people with autism have impairments in Theory of Mind (ToM). This means that they have trouble attributing mental states (beliefs, intentions, desires, emotions, knowledge etc.) to others and predicting others' actions based on their mental state.

If you've been taught ToM in an autism awareness context you will undoubtedly be familiar with the "Sally-Anne test" shown here. A child who has mastered ToM answers that Sally will look in her basket for the marble, because the child understands that this is where Sally thinks it is (she was not in the room when Anne moved it). The autistic child or child who has not mastered ToM answers that Sally looks in the the box, because the child knows that the marble is in the box and does not recognise the significance of Sally's exit from the room and its implication for her knowledge.

Impairment of ToM brings difficulties in realising that other people's thoughts, knowledge and experiences are different from one's own. This can clearly contribute to the social and communication challenges experienced in autism and the false assumption that people with autism lack empathy.

Now this is all fine and logical, and quite applicable to primary-school aged children. It is expected that a typically developing child would pass the Sally-Anne test aged 4, and therefore the children that I work with in EYFS/KS1 would be unlikely to have acquired these ToM skills, as would their counterparts in mainstream inclusion. So as far as my training goes, nothing is awry.

What was irking me was that this is all I have ever been told about Theory of Mind.

As an autistic adult, I was a touch bemused. I have always assumed that I have no problems with Theory of Mind because this seems so easy to me. Should I not be passing this test? If people with autism have no Theory of Mind or empathy (I discussed empathy a little quite a while ago) do I really qualify for diagnosis? But surely no psychologist is going to pass out diagnosis without being pretty sure it is at least largely accurate - they certainly would not miss such an obvious loophole.

Strange Story example

I researched a little further and discovered that because the Sally-Anne test is only measuring whether a person has ToM development equivalent to that of a typically developing four-year-old (so even if you pass it, that only ascertains you have 4-year-old level ToM!), more complex tests have since been developed. The second-order ToM test "Strange Stories" is designed to test children and adolescents in understanding of pretence, joke, white lie, misunderstanding, double bluff etc. Again, these present few problems to me. Confusion still stands.

Although I have been diagnosed for over five years and worked in the field for three, I am still learning about myself, autism and how the two play together. Every now and then a situation plants a seed of questioning in the old Brian. Over time I have begun to notice that perhaps I do display some issues related to Theory of Mind.

Logically I can answer every ToM question thrown at me. I absolutely appreciate that everybody experiences the world and each situation or interaction in their own way and that we all have a different point of view shaped by our history, opinions and sensory experience. I think I'm relatively all right at identifying people's feelings even if I don't know how to respond to them, I generally get idioms, sarcasm and humour (though I do slip up and take things literally sometimes) and I definitely understand logic problems such as the Sally-Anne test.

But actually, I do show some weaknesses in attributing mental states to others and inferring the necessary social information from this. Sometimes I only realise minutes or hours after a conversation what somebody actually meant, apparently I sometimes misinterpret emotions and intentions in film and TV and I can find it hard to work out who knows what or understand storylines. I do find it difficult to genuinely compute that people don't know the things I know or see the things I see. I send somebody an article with a disclaimer that it's all basic stuff that we already know, forgetting that they may not be familiar with the information. I assume that from a single blink of my eyes it is inescapably clear that my mind is boggling with shock or surprise or by the pressing together of two of my fingers that I am under immense stress. In fact, I assume that because somebody knows that facts of my situation they automatically know how I am feeling, because surely that's just logic?! And the problem is that if they don't respond to my "obvious" feelings or my "clear" signal I assume that my problem has been seen and rejected and is therefore invalid. So I stop seeking to communicate or get my needs met. All of these issues can lead to or compound the social and communication problems experienced in autism.

The circumstance that sparked my Theory of Mind ponderings this time round was a task in a research study about understanding conversation. I have since discovered that it is the "faux-pas test" and it involves a series of scenarios of an interaction either including awkwardness or not. The participant is then asked whether anything awkward was said, who said it and why it was awkward. Responses are time-limited. Sounds pretty straightforward? I thought so too, and mostly it was. What got me was the time limit: I was surprised by the number of times I clicked "no", thinking there was nothing awkward, and then realised that there had been. This ties in with what I later researched on Theory of Mind in adults with Asperger's or highly-functioning autism.

 It turns out that my path is well-trodden by autism researchers.

Spek, Scholte and Van Berckelaer-Onnes conducted the research paper that I found most enlightening as it brings together many of the earlier investigations (but see also Pedreno et al. 2017, which I only read afterwards!).

While most children with HFA or Asperger syndrome are impaired in first and/ or second order theory of mind functioning, most adults with HFA or Asperger syndrome show no impairment (Baron-Cohen 2000; Bowler 1992; Happe´ 1994; Ozonoff et al. 1991a). This does not imply, however, that they are able to function adequately in social situations, since in daily life social information is more subtle and difficult to interpret (Ozonoff et al. 1991b). Therefore, ‘advanced theory of mind’ has been proposed as a more difficult level in theory of mind functioning compared to the first and the second level. Advanced theory of mind involves interpreting complex social situations, based on subtle information.

Spek, Scholte & Berckelaer-Onnes 2009 (emphasis added)

These researchers studied groups with high functioning autism (HFA) and Asperger's Syndrome (AS) and a neurotypical group on the Strange Stories test, Faux-Pas test and 'Reading the Mind in the Eyes' test (Eyes test) as well as completing the Emotional Quotient (EQ) self-reporting questionnaire regarding empathising tendenices (which overlap considerably with ToM). 

The HFA and Asperger syndrome groups were impaired in performance of the Strange stories test and the Faux-pas test and reported more theory of mind problems than the neurotypical adults. The three groups did not differ in performance of the Eyes test. Furthermore, correlations between the Eyes test and the three other theory of mind tests were low or absent. Therefore one can question the ability of the Eyes test to measure theory of mind. Of all theory of mind tests used, the self-report questionnaire had the largest discriminating power in differentiating the two disorder groups from the neurotypical group.

Ibid.

When examined in more detail, the paper confirmed all the thoughts I had been working on. "A considerable proportion of the participants with HFA and Asperger syndrome performed faultlessly" on the Strange Stories test, which echoed my experience and is noted as being unsurprising since the expected age of passing the test in typically developing children is six. Those tests developed to explore more advanced ToM displayed even more statistically significant impairment in the autistic groups. Many in the neurotypical group also did not perform faultlessly on the Faux-Pas test, perhaps denoting that it measures quite advanced ToM skills. The EQ found large differences between the ASC groups and the non-ASC group, lending weight to its validity in diagnosis as well as highlighting the level of self-awareness in 'highly-functioning' autistic people that has sometimes been overlooked.

As a side note, no difference was found between the "HFA" and "AS" groups. This is now widely accepted and although both labels are still used the two are considered one by most professionals, Asperger's having been removed from the DSM V. Even in 2009 this supported findings of previous studies questioning the validity of diferentiation between the conditions (Volkmar & Klin 2005).

So, after all that, what I have discovered is that there is a whole lot more to Theory of Mind than I had appreciated. Although I have learnt very well from observation and trial and error and have developed a pretty good Theory of Mind that passes in most situations, this doesn't mean that I don't have difficulties in this area. For the life of me I now can't find where, but in one article I read that delay as well as impairment is common in ToM with autism, which sheds light on the way I often realise what has happened only after a situation has moved on. I found it fascinating to explore the path of research as academics discovered more and more about what it looks like in differently-presenting autistic people (and me!) and the implications of this in diagnosis and support. I'm sure there is plenty left to uncover, too!


Some further reading (or just Google!):

Tony Attwood website section on advanced ToM:
http://www.tonyattwood.com.au/index.php?option=com_content&view=category&id=144&Ite.

S. Baron-Cohen et al.: Another Advanced Test of Theory of Mind: Evidence from Very High Functioning Adults With Autism or Asperger Syndrome (1997).
http://docs.autismresearchcentre.com/papers/1997_BCetal_Anotheradvancedtest.pdf

S. Baron-Cohen: Theories of the Autistic Mind (2008).
https://thepsychologist.bps.org.uk/volume-21/edition-2/theories-autistic-mind

D. Mathersul et al.: Understanding advanced theory of mind and empathy in high-functioning adults with autism spectrum disorder (2013).
https://www.tandfonline.com/doi/full/10.1080/13803395.2013.809700?scroll=top&needAccess=true
Sadly I only had access to the abstract of this, but it looked interesting! If you have journal subscriptions you may have better luck!

C. Pedreno et al.: Exploring the Components of Advanced Theory of Mind in Autism Spectrum Disorder (2017).
https://www.researchgate.net/publication/317017028_Exploring_the_Components_of_Advanced_Theory_of_Mind_in_Autism_Spectrum_Disorder
I only read this one after I wrote the post, but also very interesting.

A. A. Spek et al.: Theory of Mind in Adults with HFA and Asperger Syndrome (2009).
https://pdfs.semanticscholar.org/068c/db96e5db4cf31e00cbc6ce2c0e1eb88c6e79.pdf