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.

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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!

Officially Square

I have been asked to write a post about how I came to be diagnosed with Asperger's Syndrome. This seems like a pretty good idea: it could help many people in the same situation as I was in a few years ago. It could also help to explain to those who don't see my condition a bit about how I came to see it, what effect this had and why it's important to me.

What made you think you might be on the autistic spectrum?

It's hard to remember back to the very first time I thought about it. It was one of those things that pops up every now and then and rings a bell (metaphorically, otherwise that would be really weird) in your mind. I'd heard once or twice about it before but I think probably the first time I seriously considered the possibility was in my final year at University.

I took a module in Music Therapy and one of the key groups therapists work with is people with ASC (autism spectrum conditions). Well, when our tutor gave the basic description the cogs began to whirr. When I heard about Asperger's, things really began to add up.

Over the following months I began to read quite a lot around the area, finding out about how females can present quite differently from males and tend to be under-diagnosed, how things look slightly different in very highly functioning people, and reading a lot of first-hand accounts from people with autism. It was probably these and the new information about females that really started to convince me, as memories from my past 20 years of life came back and began to fall into place.

Because of certain things going on in my life at the time and certain struggles past and present, it became important to me to find out whether this information was applicable to me. I read a couple of books and began to note down the parts that I felt described me. There were a lot. It all finally seemed to add up.


Why did you seek a diagnosis when you've got this far?

Contrary to some appearances I didn't get this far without any issues or struggles. I was never one of the other children. I found many methods to pretend, to mask, to look like everyone else, but I knew I was different. It was hard work to be included by a few. But I never told anyone, I just worked and never really questioned why I was different. I mean, I wondered why other people were so weird, but I never wanted to be like them, just to not be an outcast, and to have one or two people I enjoyed spending time with.

So when I came across all this information that told my life story for me and made sense of everything, it was something of a relief. I could have just self-diagnosed, but a) I'm the kind of person that has to have things set in stone for them to be true and depended on and b) people wouldn't believe a word of it if I had used it to try and explain myself. I had got very good at pretending, and people just don't take self-diagnosis seriously.

The final reason was that I had (foolishly) mentioned it as a possibility to someone to explain things that had been going on in a situation in my life at the time, and they used it strongly against me.

After all those things, I just had to know, really.


What was the process?

I asked a couple of family members what they thought first of all. They dismissed it pretty quickly, explaining that we all have various traits and the whole of humanity is a spectrum, but it doesn't mean you're autistic. Basically, very nice dear, don't be so daft. So that put me off for a while. I put it under my hat.

But my hat is very near my brain, and I didn't forget about it. When I moved out, I collected all the writings I had made from quotes from books and notes about my experiences and took myself in trepidation to the GP without telling a soul. I put a note on the appointment form about what it was for, but she made me tell her anyway. She seemed to think there was something in it and secured the funding to send me to Sheffield Asperger Syndrome Service for Assessment, which happened about 9 months after the initial appointment.

I was sent some questionnaires for family to fill in, so finally braved telling my family what I was doing and got 2 of them to fill one in. Once they realised how important it was to me, I think they were mostly humouring me. My parent's didn't have much on, but my sister, with whom I had most recently been living, had noticed more.

These were sent in prior to the appointment so when I went, the clinical psychologist had read all my own writings, and the two family questionnaires. We talked for about an hour or two I think, and then she told me she had heard enough to be happy that a diagnosis of Asperger's was accurate.

There was some information about services, support, groups etc and a follow up appointment (up to 3 were offered if funding could be secured I think) and a few weeks later I received a full write up of her findings with my official diagnosis.


Was it worth it?

For me, I have to say yes. It has given me peace and understanding about my past and helps me now to understand myself. I can work on discovering how to optimise what I am good at and work on what I struggle with. I can learn to spot warning signs of oncoming shutdowns. I can find methods of coping and helping myself and I can help other people understand how I work, because I am pretty weird in a lot of ways.

Having said all that, I have told very few people of my diagnosis. Because I have developed such effective masking strategies, it's not important for most of them to know, and I like to be treated as me, rather than 'someone with Asperger's'. Also because of my high functioning and masking, it's not worth having to explain and prove myself to those who would disbelieve me, so I just don't tell them. (Of course I do take it as a compliment to my strategies if they don't believe me!)

The main purpose to me of my diagnosis to for my own peace and understanding and that of those close to me, so relationships can be optimised through understanding.


I hope that helps to explain the process to those who are wondering. As always, I don't know what people want to know, so please do ask if you have questions. Maybe there are things you would like more specific detail on as I have been fairly general so as to avoid a mega-essay! Comments always welcome!