Empathy from two perspectives

Last night, something dawned on both me and my wife. Whilst I can empathise with others, I can’t empathise in the same way that she can.

It’s not that my ability to empathise is less strong than hers per se, more that I can’t use empathy in the same scenarios that she can.

This all came about because my wife had asked me how I thought she felt at that moment, and I’d realised that I found it very difficult to gauge. My guess was just that – a guess – and as it turned out, it was well wide of the mark. I would never have guessed the emotions that she was actually feeling.

However, as soon as she had explained to me how she was feeling, I experienced a huge wave of empathy, and managed to express some of it too.

The difference in our abilities was suddenly clear to both of us.

My wife can easily put herself in someone else’s shoes and understand and empathise with them just through observation and an understanding of the general situation that the person is in.

I, on the other hand have to be told how the other person is feeling to understand and empathise. Once I’m aware of their feelings, my empathy is every bit as strong as my wife’s.

I’d never really appreciated this difference in experience before. I think that perhaps I had, if anything, assumed that my experience of empathy was normal. But to be fair it isn’t something that I’ve ever thought about all that much. I’m now thinking that it’s my experience that is unusual, and that indeed my wife’s is more typical.

Of course, it doesn’t always work this way. There are situations where someone’s emotions are immediately obvious to me, and I’m sure that there are others where my wife gets it wrong. But most of the time, we both fit our very different pattern well.

Armed with this new perspective on things, I wonder if this explains why people who aren’t autistic frequently comment that those of us who are can’t empathise.

If your average person can empathise and express their empathy without having to be told how the other person is feeling, then I can see how they would perceive someone like me as having no empathy at all. After all, I often don’t get how someone is feeling, and even when I do, I find it difficult to express my empathy, as I’m not sure of the right words.

Does this make sense to any of you?

An allegorical story

Perhaps the most visible aspect of my Asperger’s – if you were actually to look for it – is the way in which I interact with other people.

There is quite a distinct style behind this, and some strongly embedded techniques that I use all the time to try and make my life easier.
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Relationships with women and tales of regret

When I was growing up, my relationships with women were unusual. This article covers a time line that stretches from my early teenage school days, right through to my mid twenties, and as such, covers situations that happened at school, university and in my early work life. This article is deeply personal, and contains mild sexual references – if this isn’t your thing, then you may want to skip this one.

Throughout this time in my life I was ignored by a great many of my female peers – almost as though I was invisible (something, incidentally, which Rachel writes wonderfully about here). In a sense, that didn’t bother me. I felt no great desire to interact with these young women – whilst many of my male class-mates and work colleagues found them to be hugely attractive, I didn’t.

Those that did interact with me – well that was a completely different story, and one that perplexed me until very recently. Maybe once or twice a year on average, someone who I was either at school or work with would discover me. They would always make the first move, and start talking to me. Whilst I find group conversation difficult, I have always enjoyed talking one to one with others. I can manage this sort of conversation quite well, and it allows me to feel a connection with others. Over the years I often found myself doing quite a lot of it with young women.
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Maybe we are not so different…

This, in a sense, is a follow up to the article I wrote earlier about my experience with dipping into autism advocacy. If you haven’t already done so, it would make sense for you to read that article first.

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Imagine if you will, a hypothetical mother. She has an autistic son. She believes that her son was developing normally, but that sometime around the time of his early childhood injections, he started to regress with the signs of autism. She associates the two things, and now absolutely believes that the injections caused her son’s autism. This mother cares deeply for her son, and would do just about anything to reverse that regression, turning him into a normal child once more.

Her son is now seven, and has been receiving an array of treatments, including chelation and the use of a hyperbaric chamber over the last five years. The mother sees some signs of treatments working every now and then, but her son is clearly still autistic. She has learned not to trust mainstream Doctors, after all, they believe in the shots that gave her son this condition. Instead, she is more inclined to believe unconventional specialist Doctors who have brought their own treatments and potions onto the market, with very encouraging results promised by them. To hell with the cost – if it helps her son, it is worth every penny.

Now, this really isn’t meant to represent anyone in particular. It is just meant to give something of a picture of a mother who is prepared to go to any length to reverse a condition that she perceives her son has developed rather than inherited. If you are reading this, and think I’m talking about you, then I’m not, I assure you. I’ve just created a stereotype based on what I’ve read. It may well be an inaccurate stereotype, but I’m sure there are some parents out there who the above fits very well.
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Sitting on the advocacy fence

I got a shock last week, and it has made me realise that I have been subconsciously keeping quite a tight control over what I read and how I publicise my blog.

In a blog article I wrote a week or so ago, I lamented about how few hits the blog was getting. I felt that over the last nine months or so I had grown into a confident blogger, and now I wanted my words to be read by more people. To try and put this into practice, I restarted my AS twitter account, and also started commenting on more blogs – some of which have been on my feed reader for a while, others of which were new to me.

Commenting on other people’s blogs is something that I started out doing, but which I have become more and more tardy with in recent months. Those blogs that I have tended to comment on over time are from folks who present to the world in broadly the same way as me, and whose blogs also have a distinctly this is what it is like for me tone to them. This type of blog, of course, is only a subset of the autism-related blogs out there on the Internet. Many others take a news-like approach or advocate autism, some rather militantly. Perhaps, it turns out, there is a reason why I’ve steered away from these sites.
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Awareness versus propaganda

I’m glad I live in the UK.

Here in the UK, autism isn’t well understood outside of families that have been touched by it. I believe it’s still very much seen as a condition in kids that causes them not to interact with others, and to rock backwards and forwards. Many people in the UK will have heard of Asperger’s, but will have no idea what it is.
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The mechanics of visibility

It’s a funny old game, this blogging lark.

When I first had the idea for this blog back in January, I was very unsure of myself, and, indeed about what I would be able to write about. My first postings, back in the early spring were tentative, and I was relieved that no-one was watching whilst I was finding my feet.

As time passed, my confidence grew in my ability to express myself and occasionally produce some nice and/or interesting bits of writing. Satisfaction started to set in, and I grew somewhat addicted to assembling the jumble of thoughts in my head into coherent articles.

People were starting to take notice. Some have come and gone, others have hung around for the longer haul. New faces are always welcome, and it’s great to see.

In time I’ve turned from a shy and unsure blogger into a confident one, who wants his words to be read by others.

But frustration has started to hit on the visibility of the blog. I made a concious decision to host on my own server because I wanted control, and to have the ability to muck about with my own settings, and feel pride in having created my own hosting solution. At the time, this seemed like a great idea, but I can now see the drawbacks.

My blog is not part of a community.
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A new chapter

Yesterday morning, I emailed the information email address of a private counselling clinic in Sheffield, near to where I live. The clinic offer a Developmental Disorder Assessment for those who suspect they have an Autism Spectrum Disorder. The man behind both the clinic and  assessment is a very well respected psychotherapist and professor, which ultimately helped give me the confidence to write.

I was concerned as to whether a GPs referral was strictly necessary, so in addition to giving a short(ish) background about myself, I stated my concerns and asked I what needed to do to get the ball rolling. As I was emailing a generic address at the clinic, I didn’t get my hopes up of a quick reply, but to my immense surprise some forty minutes later, a reply was sitting in my email inbox, not from the clinic administrator, but from the good professor himself.

A GP referral was necessary, and perhaps for the first time, I appreciated why. A diagnosis doesn’t necessarily come unaccompanied. There may be recommendations for further treatments to feed back to my doctor following the assessment.

So, after lunch, I phoned my GPs surgery and asked for an appointment. Here, things didn’t go to plan. My usual GP, it seems, has retired. Oh. Thinking on my feet, I realised it just meant that I’d need to explain a little bit more history. An appointment was offered, with a woman doctor that I’ve not met before. For the next morning. I wasn’t expecting that – next day appointments are usually like gold dust, and a wait of several business days is not at all uncommon. I was a bit phased by this, and accepted the morning slot. I booked a double appointment, just to be sure that I’d have time to explain myself, without feeling rushed.

It was only after I was off the phone that it hit me that I was going to go and ask for a diagnosis the following morning. All of a sudden I was filled with doubt and thoughts of cancelling – after all, I wouldn’t have the time to prepare what I was going to say, and to print out supporting documentation. My wife came to the rescue. She told me that I didn’t need any supporting notes and that I knew what I was talking about. I’d be fine. I knew she was right. It’s how I tend to approach job interviews – I don’t prepare as fully as I might, instead relying on an ability to pull the knowledge I need out of my head when asked.

I slept well. Amazingly.

This morning, as the minutes passed, I grew more and more nervous and anxious. My mind was full of questions and of trying out answers. I made it to the surgery ten minutes early and then sat and tried to calm myself. I remembered the seven-eleven breathing technique I’d been taught when I went for counselling to help my anxiety. It didn’t feel to be helping at the time, but I’m sure it did in reality.

Whilst I was waiting, the doctor appeared in the waiting room, and grumpily called someone. Uh oh. That didn’t sound good. I tried to calm myself with the observation that the doctor had rung her intercom bell to alert the receptionist that she should send in the next patient, but that the receptionist hadn’t responded. Just maybe that was why the doctor was grumpy – she’d had to come and find her next patient herself.

All of a sudden it was my turn. I wandered dazed down the corridor containing the consulting rooms, and at first I couldn’t find the right room. It turns out that they are numbered in a strange order, and after a short false start I found the door I was looking for.

The next twenty minutes passed in something of a blur.

In short, the doctor was sympathetic and listened carefully both to my concerns and to the descriptions I gave of some of the ways in which AS affects me. After about fifteen minutes, she made it clear she wa happy to refer me for a diagnosis, but at this point she stumbled at little. She realised that she had no idea where she could refer me to. This was my cue to chip in and say that I’d found a clinic in Sheffield, which went down well. She then wondered out loud if the clinicians did NHS work, and explained that they could put a case forward for me to be seen on the NHS out of area, if the clinic or those working there undertook NHS work. I explained that I was fully prepared to meet the cost of the consultation privately, and thus the NHS and special cases wouldn’t be needed – so long as she was happy to do the referral. She agreed – she’d write to the clinic to refer me early next week.

I let out a very audible sigh of relief, and felt close to tears. The doctor smiled.

I realised that in many ways I’d been working towards this moment for a year. If you count the time I spent understanding my anxiety then the road to here has been more like two years.  To be sitting with a doctor who has just said that she understands how Asperger’s affects me and is happy to refer me to get a formal diagnosis was just wonderful.

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This, of course isn’t the end of the story, by any means. It is the start of a new chapter.

Assuming the diagnosis goes the way I expect, there will be a whole new set of realities and challenges for me to face. The doctor mentioned the possibility of more counselling, perhaps as a couple with my wife, and maybe to help with my parenting skills too. There will also be that small matter of having a disability on my medical record to face up to and deal with, and the devising of strategies of when and if I need to let people know.

Of course there is still that tiny little doubt in the back of my mind that the diagnosis will not return what I’m expecting. That too would take time to re-adjust from. I’d be fibbing if I said that it didn’t worry me just a little.

Overall though, I’m feeling very positive about the whole experience and about what the future holds. A large part of this huge weight I’ve been carrying feels to have gone.

Having no-one to turn to

One of the biggest ways in which Asperger’s shows itself with me is my lack of friends. This has always been a problem for me, and I’ve spent most of my life in a situation where I’ve had either one or two good friends, or at times none. Over the years, I’ve come to terms with much of the loneliness that this brings me, but I would still dearly love to be able to hold onto good uncomplicated friendships – something that I find very difficult to do.

I understand many of the reasons why friends are important these days, and yet at this moment, aside from my wife, I really don’t have any good friends. Good is, of course, subjective. What I mean by good, is someone who I can be myself with 100% of the time, who I can be fully open with, and who I’d happily (and regularly) disappear down the pub with, or go out for a hike with, or, well, I’m sure you get the idea.

I’m in this predicament due to my own making. I last tinkered with trying to create a good friend maybe eighteen months ago, and failed. This didn’t come as a surprise, sadly. I find it very difficult to keep relationships going, and in that particular case I ultimately let it lapse after we went out for drinks a few times. In a way, letting people into my inner circle feels very overwhelming. I’m comfortable with my wife being in there most of the time, but with other people, I can see that I’m acting rather than being myself, and I guess I feel afraid to let others  in to see who I really am.

So, what does someone like me do when for one reason or another, communications break down with the one person (i.e. my wife) who is within my inner circle? That’s a very good question, and not one that I have a very good answer for.

There have been a few times recently where, with raw emotions in full flow, I have felt I have no-one to turn to. That’s not a nice feeling at all.

My wife works very hard to understand and accept this monster of a condition which she wasn’t expecting to find hidden inside me. But I fully understand that this isn’t at all easy for her, and there are times when she can’t help me, and would just like the whole Asperger’s thing to go away.

This all makes me see how many people with Asperger’s lack any of the good friends that they need to help keep them make sense of the world. Continually turning the raw emotion and negative feelings inwards must cause a lot of damage and despair, and I feel very lucky that I don’t experience that very often.

Sometimes, I can turn to this blog to express some of the feelings that are causing me problems. But that doesn’t always work either – there are some things that I just won’t talk about here. Whilst you see me as I really am, there are some aspects that I simply don’t write about. That’s usually because for one reason or another it would be inappropriate for me to comment.

If you are one of the handful of regular visitors here who I know in some way other than just through comments, then I hope you don’t feel hurt by this posting. I do consider you as friends, and in lots of ways you do know the real me. None of you are physically located close to me, however, and you all have enough on your plate already without me offloading in your direction. Unfortunately these things rule you out of being a good friend by my own definition. I hope you understand what I mean.

Diagnosis

Books make a big thing about getting diagnosed. If you believe what you read, then getting a diagnosis for an Autism Spectrum Disorder is a very important and positive step.

Is this true? The books are almost invariably written by people without autism, so why would they be such a great expert on this?

I’m a little troubled, and I’m going through a round of self-questioning on the topic.

Should I get a formal diagnosis? Should I go and see my GP and try to obtain a diagnosis that way, or should I see someone privately? What would a diagnosis mean for my work? Would it change my relationship with my employer? Would it change the relationship with my wife? How about with other people I know? If any of my relationships were changed by a diagnosis would that be a force for good or not?

There are a lot of questions that the books don’t answer. Indeed, the AS books I’ve read don’t really tackle questions like the above much at all, which is a shame because ultimately those of us wondering about diagnosis need to know the answers to questions like these in order to make a rational decision.

What do I think?

My thoughts all boil down to one statement, which makes it difficult for me to choose a path forward:

Autism is poorly understood in the UK.

Various articles I’ve read on the Internet over the course of the last year (sorry, no specific references for you) suggest that getting a diagnosis here in the UK via the NHS (National Health Service) and your GP (family doctor) isn’t easy. I’ve read of people being told not to be so ridiculous or being asked why on earth they would want to get diagnosed in the first place. This really does highlight just how far behind some other countries the general level of understanding surrounding the Autism Spectrum is here in the UK. If some GPs believe that you can’t possibly have Asperger’s simply because you managed to turn up at their surgery and ask for a diagnosis, then we have a very long way to go on the education front.

If I choose the NHS route, then I have to go to my GP’s surgery extremely well armed, and prepared for a fight. I also need to consider whether a formal NHS diagnosis would serve me best. If I choose the NHS route, then my permanent health record will forever more state that I have Asperger’s. I will be formally classed as disabled in the eyes of the state, and I will have to mention the condition when I go for new jobs, or apply for insurance. I’d even have to notify the DVLA (driver’s registration agency) about it.

Ah yes – jobs. If some doctors seem to have a lack of understanding of Asperger’s, how can I expect employers to view a diagnosis?

For reasons that I can’t really go into, telling my current employer could potentially lose me my job. It probably wouldn’t, mind you, but I wouldn’t be surprised if it led to me being told not to report for work, followed by a battery of tests before a decision was made as to whether I could return to work or not. This may sound draconian, but my current job requires a considerable amount of vetting (with good reason) for everyone that does it. I’ve already had to have my depression in recent years considered, with a statement collected from my family doctor to support my case.

Here in the UK we have laws that intend to prevent job discrimination against people with disabilities. This is a good thing, and I’m sure it has led to a great many people with disabilities getting more fulfilling jobs. But there are, of course ways around laws like this. Consider this:

After a series of interviews, a company narrows down potential job applicants to two. Both interviewed well, and both could do the job well. The employer knows that one of them has Asperger’s, and having read up on the condition, understands that it affects the applicant in a number of ways, including their ability to interact with colleagues and sometimes their ability to produce work under stress. Would you blame the employer for not choosing the candidate with Asperger’s? I wouldn’t. The employer would be well within their rights to take the candidate without Asperger’s, despite employment laws. If the Asperger’s candidate was clearly the best for the role, well that’s a different and tricky matter…

I could, of course decide not to tell any potential new employer that I have a disability. My Asperger’s brain can see the attraction of this, but doesn’t like it one bit. Not telling would be fibbing, and that ultimately gets you into trouble, doesn’t it? In my view, any employer of mine has a legitimate right to know about any illness or other condition that might adversely impact my work. That’s fair. Not telling them really does feel like starting off the working relationship on completely the wrong foot.

Interestingly, my current state of knowing but not having a formal diagnosis sits a lot easier on my shoulders. I don’t feel like I have to tell anyone – like in some way not having a formal diagnosis means that I don’t have the condition. Except of course that I know beyond all reasonable doubt that I do have AS – I’m just missing the piece of paper from someone qualified to make a judgement to confirm it. The hypocrite in me makes an appearance once more.

If an NHS-funded diagnosis would lead to a formal record of disability and a responsibility to tell employers, what would happen if I went for a private diagnosis?

I’d get a piece of paper telling me what I already knew. What I then did with this piece of paper would be completely up to me. I wouldn’t have to tell my GP about it, and hence it wouldn’t have to go on my health record. Would I need to tell my employer? A difficult question, and one that I’m not sure I have a good answer for right now.

My wife’s view regarding my AS and diagnosis is one of worry. Over the last year we have talked about AS and what it means for me (and us) a fair bit. As my understanding of how it affects me has improved, so in time has hers. Being the partner of someone with AS must be difficult. It must be hard to conceive how the person can appear on the surface to be so normal, yet inside they are quite different.

My wife worries that my pursuit – with or without formal diagnosis – of AS will lead me to ‘giving up’. What she means by this is that she worries that I’ll stop acting ‘normal’ – that in some way learning about AS will change my ability to interact with the world. This feels very alien and illogical to me, yet I’ve read very similar accounts of these worries elsewhere, so I take it to be a quite normal neurotypical point of view.

I think, perhaps, that my wife is starting to see just how much of my presentation to the world is an act. Will I stop acting just because I now understand that it is an act? No. Will there be times that I choose not to act to the degree that I have done in the past? Perhaps – and I don’t see that as a negative thing. Learning about and embracing AS is teaching me that it is OK to be who I really am. I don’t have to act like someone that I’m not if I don’t want to – and yes, that is most likely the sort of phrase that scares my wife. But you know what? I do still want to interact with the world, and so I still act. If I didn’t put on my act, I’d have trouble interacting with anyone other than those that know me very well. I’d also have to spend an inordinate amount of time explaining to everyone I met that I was unusual because I had AS, and that no, it was nothing for them to be worried about. I don’t want to live my life like that, so whilst I may choose on occasion to drop my act and just be me, that will be the exception, rather than the norm.

If I’m not going to drop my act around people I know, would I need to tell them I was formally diagnosed with Asperger’s? Perhaps not. Would I feel uncomfortable if they didn’t know? Maybe yes. As I wrote above, though, telling people may be a lot of work for very little gain, and I’m not sure I want to entertain that.

Would I like people to know? Yes. And no.

I would dearly love people to understand that I was autistic and to make little allowances here and there for me to make my life easier. I’d love to be in a position where I could act a little less around people other than those closest to me. I fear the reality of that situation is a long way off. People in the UK simply don’t understand autism right now, and are often naturally suspicious of a condition that they can’t immediately see. I suspect that opening up to people would cause me considerable pain due to unexpected and sometimes negative reactions.

So where does this leave me? Without a definitive answer as to whether a diagnosis is a good idea or not.

A formal NHS diagnosis would buy me some peace with the world, but it wouldn’t make the world treat me any better. Indeed, it could potentially cost me my job, and make it more difficult for me to get a new one. It could cause alienation with people that don’t understand autism or who can’t buy into a condition that they can’t immediately see. Would the less-formal private diagnosis buy me as much peace but without the other side effects? I doubt it.

Yet there is something about obtaining a formal diagnosis that is about negotiating peace with the world. I’ve not fitted in thus far in life, but now I know why. Getting a piece of paper with that diagnosis on may be me formally saying that I accept that I know why I have never fitted in. Obtaining that peace holds a huge amount of attraction to me.

It feels like there is no middle ground here – either you go the whole distance, getting formally diagnosed, being open with everyone about it and accepting the consequences of that, or you don’t pursue diagnosis at all.

It feels like I’m being urged to jump off a cliff on the understanding that I’ll be able to fly. I want so very much to be able to fly that I almost believe what I’m being told.

I want so much to go to my GP and ask him for a formal diagnosis.

But I haven’t made an appointment.

Maybe that says it all.

I would love to hear your thoughts on this tricky subject.