About two years ago Vic and I wrote a chapter on empathy for an ebook about living in an ASD and neurotypical relationship. It`s in
Comments to each chapter were added by Tony Atwood, who knows a lot about Aspergers and all things autistic.
I’m blogging it with the hope the book enlightens those who don’t understand what an ASD condition involves, or how it can affect both parties. I consider myself lucky to have known and loved Victor. It wasn’t easy, but to quote an English lecturer I once knew, (and used in an entirely different context granted, but certainty reflecting my world view); ‘if it’s easy its not worth doing’.
This chapter is dedicated to Victor John Burgess
12.05.1959 – 11.06.2017
Asperger’s and empathy – Sandra’s story
Like anyone, I suffer from stress at times and this affects my ability to communicate with my husband in a calm way. When I get stressed, Victor’s quite a good person to have around as he doesn’t react like I do to the things that wind me up. Often he’ll smile or laugh if it’s not a serious incident that’s set me off and this frequently makes me stop and look at how unreasonable my reactions are. His calmness helps me to take a look at my own behaviour and often I end up laughing too. In that sense Victor’s a really good listener, allowing me to let off steam about things that don’t directly concern him.
However, when I’m upset by his behaviour specifically, things between us can quickly go from bad to worse. I end up yelling or crying and Victor withdraws further into himself. We’ve had so many times like this where I’ve been very angry and cannot get Victor to understand why I’m so upset. It often results in me refusing to talk to him, ignoring him as a way to make him feel bad (which doesn’t help at all, and I’m not proud of behaving that way). Through it all, I still hope that he’ll figure it out by himself but this very rarely happens. I can think of one particular time when I’d pretty much stopped communicating with him and was feeling hopeless and depressed about our relationship; we were in the car and he suddenly pulled over into a lay-by and asked me what was wrong. I think that’s the only time this has ever happened! I was so grateful for that, it really helped. Because the problem with Vic’s difficulty in empathising is that, as a consequence, I very often feel quite alone, like I’m the ‘adult’ partner who has to explain everything regarding our emotional life together. That can be really hard at times.
But as the years have gone on (we’ve been together for eight years now), and the more I understand Victor as a person, the better I’m getting at organising my life so that I don’t get caught up in feeling emotionally different or wrong. This can happen if the non-AS partner gets locked into the kind of life their AS partner would seemingly prefer. That’s what I’ve found the long-term path of an AS/NT pairing can often become – one where the neurotypical partner becomes isolated from their social set. I’ve tried hard not to let that happen. I fully accept it’s Vic’s choice not to interact with many other people apart from me. I don’t mind that as long as I’m clear that it’s my responsibility to stay connected to friends with a more recognisable kind of empathy. I mean my own friends, who I don’t have to explain things to about how I feel. This keeps me mentally healthy. Basically, if I didn’t have my own friends, who have nothing to do with my married life, I’d probably be unable to stay sane or married – or both!
Victor was brilliant when my mum died. We hadn’t known each other for very long then, maybe six or eight months. Because he is so responsible, he drove up to my sister’s house (forty-five miles away) to pick me up after we’d been to the hospital. He was very gentle with me, holding me while I sobbed. Later, when I came out of hospital after a hip replacement operation he looked after me really well, cooking (not very imaginatively but hey, I was grateful!) and even agreeing to give me the necessary course of injections in my stomach for what seemed like weeks afterwards. So I did feel looked after. I think practically, Victor can ‘do’ empathy, when he knows what needs to be done. But, on the other hand, when he came to collect me from hospital another time, he was already very stressed because he’d had a hard time finding a parking space and made a big fuss because I had to ask him to go back up to the ward to collect shoes I’d forgotten. I was in a wheelchair at the hospital entrance. He could not understand why him being bad tempered and making a big deal out of having to go back to the ward upset me. I’d had a big operation three days previously – and he was angry that he had had to go back and collect my shoes!
There are many issues we’ve fallen out over which have never really been resolved, and this is difficult. I have tactics when we have to talk about serious issues. I make sure I am very calm, speak in a reasonable tone and don’t start shouting when I feel myself getting exasperated with Victor’s lack of input. If I even sniff in an angry tone of voice, he’ll withdraw. Sometimes I can’t be calm and I start shouting. When this happens I try and remove myself from the confrontation rather than stay and make things worse. Generally, Vic will apologise if he understands what has happened and why it was making me upset. But the apology, when it comes, is always quite a while after the argument, hours or even a day later. I don’t know, but suspect that this happens because Victor is processing what happened and figuring it out. When Vic doesn’t apologise at all things remain frosty on my side until they eventually just resume as normal. I find it too emotionally exhausting to stay angry. But of course this doesn’t resolve the problem. I think I’ve accepted that we won’t always be able to work things out. It’s like there’s a big blank in Victor’s ability to understand when he has done or said something I’ve found offensive or emotionally cruel. I suppose because I know, in all our time together, he hasn’t really learned to be more emotionally aware of how I am as a person, part of me can accept that he never will. I do understand that this is difficult for him. But it’s tricky to remember this all the time and also, I don’t want to treat him like he’s so different that I have to act like I’m someone else.
I’ve tried asking Vic how he’d describe me. He always says, ‘you’re funny, and you’re kind-hearted, and you’re small.’ Like that was a quality of my personality. I think that’s when I realise that we are, to some extent, always going to be strangers to each other to some degree. But it doesn’t make me sad. I like the fact that I’ll never really know him fully. It keeps me interested. Is that odd? We have a good, sexually-intimate relationship which is loving and real. Both of us feel very close to each other that way. I think it’s the one time when we are truly together.
I know Victor loves me. He knows I love him. We will get by, working out how to negotiate our difficulties and differences as we go. I was convinced Vic had Asperger’s long before we got married, although he wasn’t diagnosed until much later. But I need to point out something I believe is crucial; if Victor and I had had children together, I honestly don’t think our marriage would have survived. I would have found the emotional loneliness, along with the additional responsibility, too much to bear without the diagnosis and without the emotional maturity I now have. Victor loves his children very much but he does have a hard time empathising with them and their lives. It has caused a rift in the family communication but now the children know about his AS (they were told a year ago) I can only hope things will improve with time and their understanding.
After we’d lived together for about three years and I recognised Vic was different but didn’t have a huge amount of knowledge about AS, we went for counselling at Relate. It was of no use to us whatsoever. We had many problems with seeing Vic’s children, which culminated in him going to ‘Families Need Fathers’, as I found it was too much for me to deal with as his only close friend. I suggested he should go as I was constantly overwhelmed with panic about the situation, being unable to intervene on his behalf, but wanting to defend him. Really I wanted him to sort it out himself but he was simply unable to do this. He couldn’t see that how he was being treated was abusive and I had to watch it affecting him, his children and their relationships. It was a very black time for all of us. As he wasn’t diagnosed until January 2015, I felt lost in a muddle of messy emotions coming at me from all sides. The children were angry he’d left home, his ex-wife was angry and Vic was depressed trying to keep himself together with all this rage being fired at him so I had to make a decision to stay or go and (obviously!) I decided to stay.
The hardest thing about that time was trying to understand what Vic was feeling, as he always plays things down and never got angry when he had a perfect right to be mad. I did a lot of coaxing to get Vic to talk about how upset he was when he seemed very sad. Then he would get mad at the wrong things – like having a massive fit while driving at someone driving in front of him doing something he thought was terrible, when it seemed quite innocent to me. I eventually figured out that these fits of anger (and they could be quite intense) while driving, were connected to text messages from his ex-wife that he hadn’t shared with me. They were often really cruel, abusive and manipulative. I don’t know why he didn’t tell me about them but eventually he started sharing when he’d had a nasty text and this helped me understand his moods a bit better. Victor finds talking about anything emotional very difficult. Often his reactions are odd when he’s upset, like shouting at other drivers when most people wouldn’t be upset by what they were doing. Victor doesn’t seem to recognise when he is getting stressed or upset. Whereas I’ll say ‘I’m getting upset now’ or ‘that wasn’t a very nice thing to do’ or ‘what you said about so and so upset me and I feel…’ Victor doesn’t verbalise his emotions. I am always telling him that I can’t guess what’s wrong, that it’s too exhausting and when I feel myself going into that guessing game, I stop. It took me a long time to learn to do that.
Now, as I’m writing, I’m wondering how we actually do communicate! I believe Victor does know when I’m upset and, because he trusts me to be honest and open with him, he will tell me what the problem is when he’s upset – if and when he has figured it out! He needs time to work out why he feels bad, generally. I know that about him and it’s okay. I suppose then, we’ve come quite a long way in our particular kind of empathising as a couple. Victor can now apologise if he knows he has upset me – and my having to explain why I am upset has become second nature. I don’t think that’s a bad thing. I think it’s positive that Victor has helped me to become more honest and vocal in having to spell out my emotional reactions to events. I like the fact that we don’t ‘play games’. I still fall into my old, familiar ways of being sometimes and will yell and want to make him feel bad; but those times are rare, thankfully, and usually we can avoid them. We share the same sense of humour and we both love books and nature. Laughter often saves us from arguments. He will always make me laugh. I think he’s a wonderful man.
Asperger’s and empathy – Victor’s story
Although I was not finally diagnosed with Asperger’s syndrome (AS) until January 2015, after a long wait to get a diagnosis, I have always known that I was ‘different’ in some ways from most other people. I have lived with this all my life, as early as I can remember from my school days. I know this has held me back in many ways during my life – at work, with my career and also in my relationships.
Ironically, I spent the early part of my working life in the specialisation of communications, serving with the Royal Navy. It was even commented on at one point by a shipmate that ‘for somebody working in communications, you aren’t a very good communicator’. Fair comment!
My earliest memory of being different or finding life difficult is on the garden swing as a child. I would swing furiously to relieve my frustrations. I still have photographs of me doing this, with a scowl on my face! When I was a little older, at secondary school, I would come home from school and beat up my teddy bear to take out my frustrations from the day’s events.
In earlier years I used to think that I was just shy and awkward. But I’m not really sure that ‘shy’ is the right description. Somewhere along the way I seem to have missed out on learning the niceties of ‘normal’ social communication. I led quite a sheltered upbringing as my sister was a lot older than me and had left home by the time I started school. My parents did not have a car and didn’t do very much socialising either, so I spent a lot of time left to my own devices. I was always well cared for and knew that I was very much loved and wanted. My parents’ story had been interrupted by World War Two and, despite first meeting in their teens, by the time I was born, they were in their early forties and, I’m sure, affected by their experiences of the war. My father was a Japanese prisoner of war and spent several years badly treated out in Burma. My mother was quite unwell during her pregnancy and I know that there was a chance that either my mother or I might not have survived. I think this resulted in us being quite a close-knit family. If anything, I may have been over-protected by my parents. However, I was certainly allowed to go out and away from the home when I was a little older and did not feel mollycoddled at all.
Although ‘somewhat of a loner’, (a phrase I recall was used by one of the Royal Navy divisional officers writing up my report) I am not completely averse to company and do always seek out a kindred soul of some sort to keep me company. I eventually saw this as me being more selective than most about who I associate with and have been quite the opposite of the easily-led ‘sheep’ types who will go along with anything just to fit in with the crowd.
I know that I am averse to any kind of conflict and will always shy away from a confrontation unless absolutely necessary. This certainly caused problems in many of my relationships and was a factor in the failure of my first marriage. The more my ex-wife would try to goad me into some kind of reaction or response, the more I would retreat into my shell and not come out until the storm had blown over! Obviously, this is very detrimental in the long term as issues do not get resolved and lay dormant and simmering, ultimately creating long-term resentment.
Despite this, I do have a strong sense of right and wrong and will not stray from my principles. I am also very loyal.
I feel that Sandra and I are much better now at talking things through openly and honestly and, whilst this doesn’t mean we never fall out, it makes life a lot easier and more successful. When we do argue, I know I am not often very good at apologising and can’t explain why this is. I know that I am not above acknowledging when I am in the wrong and, if anything, probably feel in the wrong more often than not!
I know that my children have found life difficult with me and their mother not always getting on ‘normally’ and I believe that they do understand deep down that I love them and care very much about them. I know that they have sometimes felt that I don’t care about them in the way they might expect me to. I found some aspects of being a father quite difficult, although I was quite happy to engage in the day-to-day chores of childcare such as nappy changes, feeding, reading stories, playing etc. I did find it quite hard to entertain two pre-school children whilst their mother was trying to sleep after her night shifts. I would often end up taking the children out and trying to find places to entertain them – though my ideas of entertainment were more of the country and beach-side walks variety rather than paid-for organised entertainment. I have tried to instil in my children an appreciation of the outdoors and what there is to be observed if you only take the time to notice.
Socialising and the obligatory events that one is expected to attend such as work functions have always been difficult for me. I know that the anticipation in advance of such events is usually disproportionate to the actual event itself. Often I have boycotted events after getting in such a state about them in advance that I feel I cannot possibly attend them. However, I also know that once I actually get to such an event and become involved it is not as bad as I had feared, although I am sure that my idea of ‘mingling’ and socialising is not on a par with most neurotypical people.
As for empathy itself, I believe that I am able to recognise when a person is upset or there is something wrong. However, I am not always sure what to do or how to respond. It is certainly not a case of my being ‘cold’ or uncaring – quite the opposite. I think I am a very caring person and don’t like to see anybody suffer, whether they are close to me or not. Not knowing how to respond also applies to other situations where I am not quite ‘in’ the conversation or on the same wavelength as others. It is likely that I will be aware that something is not quite right but I won’t be at all sure what exactly is wrong or how to react to it.
I would say that any lack of empathy displayed on my part is likely due to my not recognising the need for it, or not understanding the situation, rather than any deliberate attempt to ignore or not acknowledge the need for it.
I don’t like noisy, brash people. In the past I have usually found someone I can make friends with but they tend to be independent types who have a strong sense of themselves and who don’t ‘follow the crowd’. I suppose they are the other people who don’t ‘fit in’. My relationship with Sandra is based on common interests; we both like being by the sea, listening to music, reading, walking and we have similar values and senses of humour. We read together as Sandra likes me to read aloud to her which I enjoy. When we are out walking with a flask of tea and a snack we are probably at our most relaxed and happy in each other’s company. When we met I found out how much Sandra loved the moors and being out walking. I also love being outdoors and by the coast so this is how we got to know each other well.
We don’t always share the same taste in music and we read different types of books – but we both like discussing what we read and what we watch on TV with each other. Both our fathers were prisoners of war in Burma and came from working class backgrounds. This is another thing we have in common which helped us to become friends. Having the same kind of upbringing and values makes us closer.
Sandra is not a very conventional person. She likes time to herself, as do I. But I know she also needs people more than I do. I am happy if she wants to spend time with other people and would never stop her from seeing any friends because I know it’s something she needs. We look after each other and I like her to be happy.
When Sandra gets stressed, I get upset too. I try to help the situation if I can but it does unsettle me. I try to calm Sandra down if she is very stressed by being reasonable and trying to help. However, if she is angry with me, I distance myself from it by going off somewhere alone. Sometimes I have to leave the house to calm down but this doesn’t happen often.
When I get angry while out driving it’s because people are driving very badly, behaving stupidly and showing a lack of manners. That upsets me a lot. I perceive it as bad behaviour and think it’s ignorant of those people. I don’t tolerate fools gladly!
There are some things Sandra does which really annoy me, like talking at inappropriate times such as when I’m watching the TV weather. This is important to me and Sandra knows this – but often forgets. Sometimes I become moody or bad-tempered when she does this but I don’t think my bad mood lasts very long.
I realised very early on after we had met that Sandra was ‘worth pursuing’. We wrote to each other a lot by email in the first months and I didn’t want to lose her. Sandra told me that on our first date I talked too much and didn’t pay her enough attention! Luckily, Sandra’s younger daughter told her to give me another chance! I think our relationship keeps on getting better as time goes by.
Tony Attwood’s summary and Q&A
Sandra tells us that when Victor’s behaviour has upset her, she hopes that he will work out why without her needing to explain this to him. Instead, what generally happens is that Victor does not understand, withdraws further into himself and the situation deteriorates.
Having the expectation that your AS partner will somehow ‘figure out’ the reasons you are upset can often be a step too far for them. You could compare this with sending a child to their room to ‘have a think about what you’ve done’. The child could be in their room for days – and still be none the wiser as to the reasons you might be upset or what to do about it. Victor is not going to work this out by himself because he is not wired to do this. There needs to be a different approach: the AS partner needs to have the problem spelled out.
Sandra goes on to say that Victor has ‘difficulty empathising’ and that she feels like ‘the adult partner who has to explain everything regarding our emotional life together’. Yes, in a sense, it can feel as though you are an adult relating to a teenager. Within this relationship, Sandra has already recognised how very important it is for the neurotypical partner to maintain friendships with fellow NTs. For many NT partners, socialising is their lifeblood, it energises them. It may be that they were renowned for this before they met their AS partner. A common issue is that the NT partner’s social network, connections and life diminish over time and may eventually disappear altogether. The neurotypical partner needs to be aware of this and actively work against it. One of the ways this is done is through spending time with NT friends.
Often, close friends and family members notice the changes in the NT partner before the person recognises it themselves. Comments like ‘the light seems to have gone out’ or ‘you used to be so happy’ might indicate to the NT partner that, whilst trying to adapt and compromise for your AS partner, that process has resulted in you losing your sense of self. The hope that, as an NT, your AS partner might become NT, is unrealistic.
Sandra then talks about how good Victor was with her when her mother died. He was gentle and held her while she cried. He was also very helpful in a practical way when she had a hip replacement. She says he ‘can do empathy when he knows what needs to be done’. That is exactly the point. Victor was able to see the tears when Sandra was crying. He could see her hobbling about when she had her hip replacement. In other words, when a person with Asperger’s syndrome sees (recognises) the need, they can, and will, do all they can to help. This may even be one of the reasons you fell in love with them in the first place – because of their ability to help in a practical way. That ability to go out of their way to help on a practical level may also have given the impression of kindness and generosity – but only if they can read the need. The problems occur when they don’t – and when they don’t respond as you anticipate, you accuse them of lacking empathy.
Sandra makes sure she speaks to Victor in a calm manner and, now that she has learned more about AS, she checks herself and tries not to raise her voice when she’s getting frustrated about something with him. It can really help an NT/AS relationship when both partners have an understanding of AS and the NT partner is prepared to make these sorts of adjustments.
Sandra’s comment, ‘If I even sniff in an angry tone of voice, he will withdraw’, highlights an odd contradiction in AS behaviour. The AS person may not be very good at reading facial expression or body language or determining when somebody needs compassion and affection. Contrarily, they can also be incredibly over-sensitive in perceiving negativity from other people that isn’t there, or even intended. So it can appear that the moment you become irritated or annoyed, this is somehow amplified back onto you. It can feel very much as though you are treading on eggshells when the AS partner is so defensive. Saying anything that is not entirely positive (or sometimes just stating facts or being realistic) will be construed as criticism or negativity – commonly, this results in the NT partner suddenly becoming the focus of negative feedback or criticism.
Sandra says there is a ‘blank’ in Victor’s ability to understand when he’s done or said something hurtful. Again, if he can’t see it, it doesn’t exist. This is either that he can’t read it or you have hidden it. In other words, you have to be very clear. For example ‘What you have said made me feel upset. In terms of sadness, it is a 9.5 out of 10. When I am a 9.5, you need to get me in a better frame of mind. Have you any suggestions? If not, I will tell you what to do’.
Another poignant comment Sandra makes is ‘it’s tricky to remember this all the time and also, I don’t want to treat him like he’s so different that I have to act like I am someone else.’ Yes, this is hard. It is asking you to act in way that doesn’t feel as though you are being true to yourself. It is up to each individual to decide how many compromises and sacrifices they are prepared to make for that relationship to work. For many, the compromises result in the relationship being a good one – for both partners. It is the relationships where each and every compromise requires the NT partner to give up a little part of who they are – without receiving anything back – that are most at risk.
Sandra states here that ‘I like the fact that I’ll never really know him fully’. This reminds me of a lovely phrase from an NT partner ‘In my husbands’ autobiography there will be chapters I will never read’. There are certain parts of your AS partner that you may never know about or understand and that are never explained. For Sandra, this is something she has considered and it is not a problem for her. But for those who hope that, as their relationship continues, to really get to know more and more about their partners, it could become a major issue. Sandra and Victor have a good, sexually intimate relationship. This is wonderful, but is not the case for many AS/NT relationships. Sandra and Victor have struck gold in that sense.
Sandra goes on to talk about Victor’s relationship with his children. Though he loves them very much, he has a hard time empathising with them. When we talk about empathy, it isn’t an area that is only going to affect the NT adult in the relationship, it will affect children as well. Victor may not really understand their emotional needs. They may sometimes feel that ‘dad loves the ‘special interest’ more than me’, that he’s more interested in his hobby than the children’s success at school, relationships and so on. As a child in that family, you learn not to talk about feelings. What that sometimes means is that children visit their friends and wish that their parent with Asperger’s syndrome were more like the friends’ parents. They won’t necessarily understand why they are not and cannot be. It is important for an AS parent to be interested in their child’s social and emotional life and to learn when they need affection and support.
Victor talks of his earliest memories of feeling different and finding life difficult as a child, describing ‘swinging furiously on the garden swing’. What Victor is doing here is resolving emotional problems with a solitary activity. He is not having to disclose his feelings to anyone or relate to other people and it’s likely that he would have found comfort in the rhythm of the swing.
Victor says he believes he is able to recognise when a person is upset but is not sure what to do or how to respond. This is interesting, when you compare Sandra’s earlier comment that Victor doesn’t appear to realise when he is becoming stressed or anxious and needs to be told. A person with Asperger’s syndrome will commonly respond to others by doing what works for them. For many, solitude is a major emotional restorative. Therefore, logic tells them that if they leave you alone, you’ll get over it more quickly, so they’ll keep out of your way. Another example would be if what makes them feel better is doing things – they will then do something they know you will appreciate as a way of making you feel better; the washing up, cleaning the car, making you a cup of tea etc. It is almost as though they try to repair your feelings by a practical act that’s an expression of love without realising that you are seeking a sense of empathy, sympathy and support – not a practical solution.
Q: Cars and driving seem to be a common catalyst for explosions for people with AS. Why is this?
A: It’s because they have a great desire to correct errors and when other drivers make mistakes or behave stupidly, they feel compelled to respond. The concept of intelligence and stupidity is central to Asperger’s syndrome. The worst insult is to be called stupid. The problem comes for the car’s passengers. The angry AS response to other drivers creates a huge amount of negative emotion which destroys the atmosphere inside the car. One minute everything is fine and you’re happily watching the scenery and a minute later you find the whole mood has changed. It can seem very much as though the AS driver has one rule for themselves and another for the rest of the world. The trouble is that an irritation expressed so visibly can contaminate the whole family atmosphere.
Q: Sandra talks about getting caught up in feeling emotionally different or wrong. Why might the NT partner feel this way?
A: The NT partner’s first reaction is going to be self-blame. This is because the AS partner is so convincing and insistent: ‘You’re the one with the problem’, ‘You are crazy,’ or even ‘You’re the one with AS.’ Having made so many mistakes and social blunders throughout their lives, deflecting is a comfort mechanism. Because AS thinking is black and white it leaves very little wiggle room to accept some of the blame or admit fault. One of the greatest challenges for those with Asperger’s syndrome is to admit they’ve made a mistake and say ‘I’m sorry, I was wrong.’ It’s so rare.
Q: Why does it take someone with AS so long to say sorry, if at all?
A: Sandra is right in assuming that the length of time it takes Victor to apologise following an argument is necessary processing time for him. Sometimes the AS person can work out what to do and other times they won’t be able to, regardless of how long they take in trying. Often, an apology might be written rather than face to face but, however it comes, if at all, it will take time.
Q: Following diagnosis, is it unusual for an AS partner not to take an interest in understanding about AS, its impact on personal relationships and finding strategies to help improve relationships?
A: No. In fact it’s very common. Basically, you’ve raised a problem they didn’t think they had and so it’s up to you to find solutions. This can seem arrogant but there is also a lack of understanding by the AS partner on how having more information could help things. This is in stark contrast to their work or special interest where they may be renowned for getting every single bit of information they can on that subject. But of course, in that case, it will be completely impersonal – just facts and information to do with a project or work. So the AS person can often feel that they have no need to do this, you’ll do it for them.