Intense World Theory

I said I would come back to the Intense World Theory that I discovered, so I am finally here to fulfil that promise. The theory is detailed in a paper by Kamila and Henry Markram, 2010 (Lausanne) and proposes a unifying neural model to explain autistic spectrum disorders. Markram and Markram study local microcircuits in the brain (focussing on the neocortex and amygdala) and propose that they are hyper-functioning in the brains of people with autism, specifically displaying hyper-reactivity and hyper-plasticity. (see Introduction for more detail http://journal.frontiersin.org/article/10.3389/fnhum.2010.00224/full)

Which is a lot of big words. Basically, if I am correct, the researchers think that particular circuits in the brain are working overtime reacting strongly to input and remembering its reactions to inform future preferences. That is a very basic summary: really, you're better off reading it from the source above.

The researchers describe four areas of effects of the hyper-functioning microcircuits which impact how people with autism experience the world: hyper-perception, hyper-attention, hyper-memory and hyper-emotionality.

Hyper-perception
Various circuits (differing from person to person, hence the very individual expresssions of ASC) have a loss of inhibition and are therefore hyper-reactive, leading to "vulnerability to sensory overflow. Consequential behaviour would be panic, aggression and withdrawal."                              

Hyper-attention
This sounds as though the brain gets 'locked into' a circuit, where a circuit is activated and then continues to reverberate, or repeat itself and is difficult to interrupt. This brain activity is clearly linked to difficulties in transition and shifting attention for people with autism, and to fixated attention on matters of interest. Also, autistic people "may seem distracted and disengaged, but are actually hyper-focussed on internal processes."

Hyper-memory
Here it is proposed that early learning is strongly imprinted and not easily over-written. Once something has been learnt it is very hard to unlearn, explaining why people with autism find it very difficult to address problems or tasks in a new way. Also, there may be displayed "idiosyncratic, albeit exceptional memory capabilities."

Hyper-emotionality
Quite contrary to many previous models of autism, the Intense World Theory suggests that in autism there is actually an enhanced sympathetic response to social content as well as to novel or sensory rich content and negatively associated stimuli. This is thought to lead to enhanced fear conditioning and avoidance of high-emotion stimuli (eg. eye contact) as well as avoidance of novel environments "due to fear of surprises that arise from over-generalisation of previous negative associations." Behaviours displayed may seem unpredictable, exaggerated, extreme or inappropriate.

The writers conclude that:

"In contrast to other deficit-oriented theories of autism, the Intense World Theory points out that enhanced brain functioning may lie at the heart of autism. In this light, autistic individuals may in general – and not only in exceptional cases – exhibit enhanced perception, attention, and memory capabilities and it is in fact these capabilities, which may turn the world too intense and even aversive and lead to many of the autistic symptoms including withdrawal and social avoidance".

Obviously this is a painfully tiny summary, and quite possibly not a perfectly true representation of the research, so please go and do some further reading and come back with questions! The theory is still fairly controversial I think, but there are parts of it that seem to make a lot of sense to me.

I would say the reason I avoid emotional stimuli is definitely due to being overly sensitive, getting overwhelmed by people's insides and not knowing what I am supposed to do with that stuff or how I can make someone feel better or show them I am happy with them. Hyper-memory I think also affects me quite strongly: I tend to be pretty rigid in my approach to many things (probably much to the frustration of Mr Peggy!), to the extent that I feel like I am doing something wrong if I deviate from my own expectations. The other two areas also add up with my and many others' experiences, so if you would like any more information/anecdotes/thoughts on any particular areas, just let me know!

Decisions Part II - links and research

When I consulted the oracle Google on the question of whether other people with ASC experience difficulty with decision-making, I was surprised by the huge number of results. Many others in my position had asked the same question on online forums (www.psychforums.com/asperger-syndrome, asperclick.com, wrongplanet.net) and received not unanimous responses, but a high proportion of people echoing difficulties with making decisions and the stress caused by this.

I came across further anecdotal evidence on a couple of good blogs I discovered through this search. https://aspergersandmeblog.wordpress.com/2014/02/20/how-do-i-adult-making-decisions/ has some good tips for people with AS to assist in decisions, and the blog 'Musings of an Aspie' has a whole series on 'What I want' as well as some single posts on decisions that I could have written myself (if I were as eloquent!): http://musingsofanaspie.com/2013/07/29/what-do-i-want/
http://musingsofanaspie.com/2013/02/21/my-no-reflex/
http://musingsofanaspie.com/2012/09/05/when-all-you-can-draw-is-a-blank
And to top it all off, I did manage to find a couple of academic studies in the area. One I sadly couldn't access due to copyright, but was conducted by Lydia Luke, University of Cambridge: 'Decision-making difficulties experienced by adults with autism spectrum conditions'. The abstract states that:

Autobiographical and clinical accounts, as well as a limited neuropsychological research literature, suggest that, in some situations, men and women with autism spectrum conditions (ASCs) may have difficulty making decisions. Little is known, however, about how people with ASCs experience decision-making or how they might best be supported to make decisions for themselves. In this study, we compared the decision-making experiences of adults with and without ASCs (n=38 and n=40, respectively) using a novel questionnaire and the General Decision Making Style inventory (GDMS, Scott & Bruce, 1995). The participants with ASCs reported experiencing several problems in decision-making more frequently than the comparison group, and were more likely to report avoidance of decision-making, as measured using the GDMS. The findings highlight areas of potential future research and inform suggestions for supporting adults with ASCs during decision-making.

Sounds interesting. The other research I found was conducted by Lee A. Wilkinson (http://bestpracticeautism.blogspot.co.uk/2013/01/decision-making-problems-in-adults-with.html)

The results indicated that compared with their neurotypical peers, the participants with ASD more frequently reported difficulties in decision making. Decisions that needed to be made quickly, or involved a change of routine, or talking to others, were experienced as particularly difficult, and the process of decision-making was reported to be exhausting, overwhelming, and anxiety-provoking. The participants with ASD reported significantly higher levels of anxiety and depression and were more likely to believe that their condition interfered with rather than enhanced the decision-making process. Not surprisingly, the participants with ASD were also more likely to report that they avoided decision-making.

...

These findings are consistent with previous autobiographical accounts, known features of the condition, and previous studies of decision-making in ASD... Despite limitations of the study (e.g., self-reports), the results are consistent with suggestions from the literature relating to decision-making for people with ASD. Importantly, they also have some practical implications for supporting more capable adults with ASD. For example, it may be useful to: (a) provide additional time to reach a choice, (b) minimize irrelevant information, (c) present closed questions, (d) offer encouragement and reassurance, and (e) address general issues around anxiety. Understanding how adults with ASD experience decision-making is especially relevant for family members and professionals who are involved in providing support to help these individuals achieve greater self understanding, self-advocacy and improved decision-making in lifespan activities such as employment and personal relationships.

It seems I am definitely not alone then, and that this issue may well be part of the AS, not just me being mindless and pathetic. Bit of a relief, really. Now how to explain this problem or get people to support me in it without telling them about AS... that could be a tricky one. After an issue last week, I am wondering whether I should tell work, but I'm not sure how they'd take it - it seems to be a fairly "fend for yourself" environment, and my colleagues are very aware of severe needs so may discount my milder problems. Will have to ponder on that one.

The D word

Anybody who knows me knows I have a problem with making decisions. It's far more long-standing than my diagnosis of AS and has left me with many rather embarrassing memories.

It tends to go something like this:
Somebody asks a very simple question, such as "do you want to go for first dinner break or second?", or "what do you want to do?", or I have to decide what food to buy in a cafe. Basically, anything where a decision is required on the spot, I don't know the answer and somebody is waiting for it.

Now, strangely, the less I mind about the answer, the harder this sort of situation is and the more stressed and anxious I get. Inside, I start to get worried as soon as the question is put or I see it coming. I start frantically searching for the 'right answer.' Here I am considering all the possible minute implications of each possible decision (to the routine of my day, to my companion's feelings, to my finances, to what is good for my body, to whether Great Aunt Gertrude would put her pink hat on if I chose option x, and whether that would have an impact on llamas in Peru etc etc). If I find a 'right answer' (some kind of deciding factor, eg. "I really fancy that toastie", or "that's the cheapest and I'm poor at the moment", or "the other person will want the big piece of cake so I'll take the small" or "that's got the highest specifications so is the best version") then everything is fine. The choice is made and we all carry on as if nothing had happened.

But if there is no deciding factor to find a 'right answer', we run into trouble. My heart starts pounding and my breathing gets faster, I go bright red (I assume by the feeling in my face anyway!), I start to get panicky and my eyes might dart around. At this point if there's no way out of the decision my eyes are prone to leak. This is very embarrassing in public when you are a grown up! I also might start tapping my fingers together quickly, or wiggling my toes, possibly before the crying stage. I will most likely be very quiet while this is going on. If we're lucky I might manage "I don't know." I'll be feeling very scared and vulnerable. The most recent couple of times I noticed I started flapping my hands and stepping my feet quickly on the spot, or sucking a finger. One time my mouth muscles did a weird thing I couldn't even stop when I tried.

As an aside, these last few have worried me a bit as normally I don't do things outwardly that would make people think there was something wrong, so I don't really know what's going on. I could just be becoming more aware of myself, but I'm reasonably sure I didn't used to do them or people wouldn't find it surprising that I have AS! Since changing jobs I seem to have been experiencing more 'AS symptoms' so I don't know if it's related to that, but I certainly hope it goes away. Any ideas welcomed! Just had a thought: perhaps this could be because in certain situations crying is not an option, like at work, so maybe the excess is coming out in a different way. Any thoughts?

I have observed a few factors which seem to compound the situation when it happens:

• time pressure
• the person reiterating that I need to decide rather than them
• thinking someone will not be happy with me if I don't make the decision (or if I make the wrong choice)
• when I'm hungry
• when I think a particular answer is expected or desired and I don't know what it is

If you think I'm in this situation and want to help, the very best thing you can probably do is to give me a hug (but only if you know me) and ask if I want you to decide. I'll probably nod. It doesn't matter what you choose: the reason I'm like this is because I don't know what I want. If I don't want you to choose, I might just need some time and space. If you can, take me somewhere quiet where we can sit down. I'll probably start to talk to you about it after a while. 

Anyway, until a week or two ago, I thought this was just me being bad at making decisions, but then I watched a documentary that got me thinking. It was the fourth episode on David Eagleman's series 'The Brain' and was titled 'How do I decide.' It looked at how both logic and emotion are needed to work together for decision making and showed a case of a lady with a brain injury where these links had been compromised and how she now finds even the simplest decisions incapacitating and can get emotional over it. I wondered if it could be at all related to AS, thinking about how the brain works differently with emotions and things, so had a look on the internet, and it looks like I'm certainly not the only one.

More to follow on what I found!

The E word

People with autism lack empathy. Every layman knows that, right?

Right, but it seems that most people that aren't laymen (let's call them standmen, just for the fun of it) realise that this is often not the case. 

I found this out through a very little of my own research. I wanted to understand why I react in certain ways to certain things, and how what happens inside me can possibly match up with my diagnosis. (Resisting the temptation to rant here about the need for educating people - myself included - beyond the decades-old stereotypes...)

I had made a few observations about myself:

• I get really upset by sad things happening in films. More detail on this later.
• I hate to watch or think about violence. I don't understand why anybody would want to. Somebody is hurt by it and it's horrible.
• Someone can tell me about something terrible and I won't really react inside or out, yet I can be in floods of tears just reading about something vaguely emotional, never mind it happening in an audio-visual format.
• People throughout my life have commented that I don't seem to care about things, but these are actually the very things that strike me to the core.
• If something is important to me, I probably can't look at the person and talk about it at the same time.
• I think I am quite good at sensing people's emotions and I often know what is going on when two people misunderstand one another.
• It takes me a long time to recover from strong emotions, and they have a physical effect on me.

In summary, I definitely have empathy. In fact I feel like I sort of absorb the emotional atmosphere of a room or interaction as soon as I enter, or very shortly afterwards. It can be quite powerful: if there is tension or unpleasantness it makes me feel physically sick - for quite a time afterwards I often can't eat. If I come across somebody sad I want to help them.

But I thought people with autism aren't supposed to have empathy.

If I really care about
something I might look
like this, only less
glamorous.

I am now wondering if maybe it's that I don't have empathy quite like everyone else. Those inside things; the feeling sick, the hurting to help someone in tears, don't show. I don't always know what to do with them, so I don't do anything. Then people think I don't care. Maybe that's what they mean by people 'not having empathy': having so much empathy that you can't do anything with it. It's too much, so you freeze and it's impossible to do anything about it or show anything because if you do it will explode.

If I haven't waffled you to death with rambling yet, I have included below an account of the occasion that got me to thinking about this and the research theory I then came upon which made so much sense to me. Maybe they will help shed some light for somebody.

Finally, as this has been a post trying to collect a lot of partly-formed thoughts, it would really help me if readers ask any questions they have about any part of it: my experience, my thoughts, links to the research I found, basically anything I've missed out that would help to explain to somebody who doesn't have the same insides as me.

Probably more like this. I promise I care inside. So much it hurts.

*********************************************************************************

The particular incident that got me thinking this time came watching the film Ghost. Now, when watching or reading, let's say 'experiencing' something emotive I tend to go one way or the other. In public or a place where I'm not relaxed, I shut off that part of it entirely. I refuse to get involved. I think about other things when it gets dangerous and distract myself. It's safer not to go there.

But this particular day I was snuggled on the sofa with my husband, very safe and had been told the film was romantic. I was prepared for a bit of pulling at the heartstrings and some happy tears (I know I get far too involved if I don't choose to switch it off!). I ended up being completely drawn in and was (silently) sobbing my heart out by the end. It was just so sad. It's making me sad now, just thinking about it. And afterwards, I jumped up and took the dishes off to wash up and went to the toilet until I could talk without a quiver in my voice, hoping that Mr Peggy hadn't figured out what was going on.

I went back to sit with him, somewhat quieter than usual, but able to reply to him. I sat close - I needed touch to comfort me - but after a while I realised I wasn't looking at him. Slowly we started to talk about unrelated things, practical things or funny things and gradually it began to wear off. Later on I could look at him, then later still his face. It was only after a long time I could look into his eyes.

I've half noticed this effect before but never until after the event and I've never paid attention to it, but this time, I somehow registered the progression of what I could do. I'm not sure whether I completely did at the time or if it was afterwards, but it's since happened with another situation I was very upset about and I tracked it through the same stages.

*********************************************************************************

I did some reading about autism and emotion and empathy and things, because my experience didn't seem to add up with my idea of autistic people's emotional life. What I came across was the Intense World Theory. The name sounds a bit sci-fi and I don't know how widely accepted it is, but it made a whole lot of sense of my life. 

It sort of turns the traditional physiological explanations of autism on their head: instead of 'deficiencies' causing all the recognised difficulties, the theory proposes that parts of the brain are 'hyper-functional' (I think I might do a separate post on this!), and one thing this can lead to is 'hyper-emotionality.' 

Basically, this can be people experiencing so much of emotions that it's too much to deal with. Then we get the shutting-off, which looks to outsiders like we don't care. Or if we don't completely shut off, we have to reduce the stimuli - eg. looking at 'safe' things, not faces or eyes, which are much more intense and fill up my brain.

The theory doesn't explain all of my questions and thoughts, but it throws a whole lot of light on my experiences of life. I'll look at some other aspects next time.

Sensory Issues

I have been asked to write about how I deal with sensory issues, and particularly with consideration that I don't disclose to most people.

I will start with a bit of a disclaimer. I consider myself very lucky that I don't have any really severe sensory issues that will send me into immediate meltdown or anything like that. Most of mine are preferences (albeit strong ones!) or things that will cause me distraction but not real distress or if they really are things I find it difficult to deal with they are mostly avoidable if I am aware.

Some examples of my sensory issues:

Textures/touch
I really hate ribbons, buttons and lace. I don't find them physically painful but rather disgusting and revolting. Usually it is possible to avoid touching. Some versions are worse than others: jeans buttons are OK (though not when I was little) but I would never wear a shirt. When they are loose that is the worse. It makes me shudder and flap a bit! The thought of pearly buttons that wobble on old lady cardigans makes me want to run a mile.

Thankfully I can choose my own clothes, being an adult, but looking after children I do occasionally run into button issues. Depending on the buttons sometimes I can grit my teeth and bear it. If not, I will send the child to someone else, explaining that I have a really weird thing about buttons and I just don't like them. People usually think it's a bit odd but accept it. Sometimes I explain it as being like when people hate cotton wool or fingernails on blackboards as a lot of the general population seem to have those particular issues.

Smells
Smells tend to register either very weakly or very strongly with me. I cannot stand the smell of air freshener: it makes me want to vomit. I'd rather smell the poo or whatever bad smell it is than air freshener. I deal with this by trying to explain to people I don't like it, but they usually spray anyway. I try and keep as far away as possible until the smell has dissipated. In fact I'm not too keen on most artificial scents - I have a perfume I can tolerate but I only wear it occasionally and it tends to bother me when I can smell it on my clothes afterwards. I can stand when Mr Peggy wears aftershave but I don't really like it and find it a bit distracting.

I also have an issue with laundry smells, probably because they are an artificial scent. I can tolerate one or two kinds but others distract me a lot: all I can think about when wearing clothes washed with them is that they smell wrong. It's generally fine on other people though and Mr Peggy is very understanding and lets me buy the washing powder I want even though I'm sure he thinks I'm a bit doolally. Occasionally children have really strong-smelling fabric conditioner and that makes me want to be sick too. To deal with this I just try and keep my distance!

Sounds
I don't like really loud noise (you won't catch me at any rock concerts!) and when I'm tired I find focusing in chaotic background noise difficult. To deal with these, most really loud noises are avoidable. If not I might cover my ears for a passing ambulance or similar brief and unexpected sound. People don't seem to find this too weird. In background noise I either tune out or try and watch people's lips to hear what they are saying, or just copy the body language of other people in the conversation.

Other than that I can get distracted by sounds, for example the humming of an item of technology or outside sound. I also find it very frustrating if a sound I know well is wrong: some music players can change the tempo of the music minutely, which also adjusts the pitch minutely. In a dance class this will drive me mad while nobody else has noticed, until I eventually tell the teacher, who says "I don't think we've changed it" then finds out it is wrong!

Sight
I don't really have any visual issues though I don't find it easy to deal with bright light and I have a tendency to get stuck in visual patterns, following them round and round when I notice them. I can also get distracted by anything unexpected or something happening outside the area I am supposed to be focussing on, eg. in training.

Taste
Again, not really a problem for me. There are foods I don't like but nothing that is an ASC-related sensory issue.


Solutions
Avoidance of the unwanted stimulus is my main solution. If this requires compliance from others often a brief "I know this is weird, but..." works.
Otherwise, I tend to get over the issue by indulging in sensory input that relaxes me. This varies according to setting, particular issue I want to get past and other variables but can include:

• rubbing my index finger on my thumbnails or thumbnails on my face around mouth
• letting my eyes lose focus and 'zoning out' for a while
• wearing either loose, comfortable clothes or something that gives even pressure eg. leotard and tights, leggings etc
• listening to music
• walking outside in the breeze/wind/near water
• having a shower or bath
• watching TV

These things are methods I have noticed that help me to descale from impending sensory overload. I probably have more issues with brain overload (emotional/communicative) than physical sensory issues so can do a post on that if required.

Hope that answers some questions. Please ask as always for more details or things I have not covered.

Surprise Square Day - Communicating

I'm having a Square Day today and this is what it can be like.

Today I didn't even realise it was a Square Day. Maybe I'll call it Surprise Square Day. It's been a Square Week or two actually, but I had a quiet day yesterday and knew I had the empty house to myself all afternoon so was feeling quite round this morning.

Dragged myself out of bed (always a struggle. It's just so cosy!), even spoke to Mr Peggy before showering (never usually a good idea to speak to me before I'm properly awake!), got ready for church full of the joys of spring, or something like that.

The walk was lovely with Mr Peggy. The sun was actually shining. We chatted about this and that. Holding hands is always good: I like touch. I felt very slightly wrong inside (this is a feeling I can never explain, but was hardly noticeable this morning) but everything was good, there was nothing to worry about and I was looking forward to the day ahead.

But when we got there people started talking to me. I wanted them to go away. I was rather surprised: today is a good day. Why do I want them to go away?

Now normally all this stays inside and I do my best to pretend like a good person that I am just like everybody else, that I like talking to people and so on. But Mr Peggy is a very wonderful Mr Peggy and quite often says that he would like to understand more about how AS affects me and what it's like. Naturally, having AS, I find this quite difficult to do, though I would love him to know and understand everything, but I made the effort to share.

I said 'I don't like the people today.'
Mr P: What?
Mrs P: I don't like the people today.
Mr P: What do you mean?
Mrs P (thinking 'what is there to explain?!'): I don't like them.
Mr P: Who?
Mrs P: All the people (gesturing)
Mr P (slightly frustrated at his non-communicative wife!): I need a bit more than that...
Mrs P (finally managing to work out a little what she doesn't like about the people today): I don't want them to talk to me. I don't mind them being there but I don't want to talk to them.

It's quite entertaining reading it back, but it's the sort of frustrating scenario that AS throws at me and those close to me quite often. They are frustrated that I am seeming to be awkward by not explaining things or answering properly and I am frustrated because I can't understand what else there is to know. What they also may not realise is that although that still probably wasn't a very satisfactory answer it took a huge amount of effort and self control to be able to give it.

Not sure if it's because

• It takes me a while to figure out what I'm feeling myself.
• Even once I've figured it out I don't necessarily know how to explain it to someone else.
• I don't like explaining things when I'm feeling square. I want people to know but I hate telling them. Why can't they just be in my head?
• I don't know what they want to know - I forget they're not in my head so I don't know where to start.

Why are you asking me questions? Why do you want to know? Why don't you already know? Why do I have to tell you? I don't want to talk. Go away. (But really, I'm glad they don't go away. It's the ones that stick with it and help me make the effort that make things better for all of us. Thank you Mr Peggy :))

Sometimes I think it would help if talking didn't have to happen. When I'm feeling square it's harder to talk. I can't find a way to explain why at the moment but I'll try and think about it.

On a Square Day

I've been having a lot of 'Square Days' recently. I'm rather chuffed with the description actually: the hunt for a word to explain these days is finally over!

The search began when I wanted to express that some days are different from others. We all have good days and bad days and ones where we just shouldn't have got out of bed, but I was struggling with the fact that some times I just seem to feel a lot more 'autistic' than others. But autism is most definitely not a feeling. I'm not sometimes autistic and sometimes not, so it seemed really strange to say I was feeling particularly autistic that day.

I asked a few other people what they thought on the matter. Everyone reported that they too felt more severely affected at times, especially when tired, stressed, ill or anxious. Perhaps I wasn't so far off the mark then! But I still didn't like the phrase (maybe because most people don't know of my diagnosis so it would seem rude and insensitive to people with autism to them if not just plain weird).

I decided to write about it anyway, as I think it's an important thing for people to understand, so I came to my blog to start writing and read my title 'Square Peggy'. It just fit perfectly.

I've just collected a few initial thoughts about what it's like to be me when I'm extra square.

On a Square Day I:

• feel very vulnerable
• may be irritable
• may not like talking, particularly answering questions
• may get overwhelmed by a seemingly tiny task
• am much more likely to shut down
• need more sensory input to make me feel calm and safe, so I tend to stim more and seek comforting touch from someone I trust
• take longer to process language and situations
• tend to avoid risky/unsafe/scary things more, for example eye contact
• may be very emotional
• may seem not to care or be very responsive (usually due to being very emotional)
• find it difficult to join in conversations and may be quieter than normal
• need my own space

I'll probably add to that list as time goes on - those are just thoughts off the top of my head. Please share your own experiences in the comments or send me a message. And please ask if you have any questions or would like more detail on any area. Thanks!