At the age of 62, I was diagnosed with Asperger’s. It wasn’t a huge surprise. I’d read about Asperger’s and it did seem to describe me. As a child, I was considered academically gifted and great things were expected of me. But I was also considered shy, nervous, physically clumsy and a bit of a know-it-all. I had few friends and suffered dreadfully with anxiety and depression. Later, I was diagnosed with chronic fatigue. I felt like an outsider from another planet.
Indeed, people have the impression that people with Asperger’s (aspies) are like Mr Spock, the pointy-eared Vulcan from Star Trek – logical, unemotional and boringly dependable. We’re often portrayed as cold, unfriendly, tactless, opinionated, arrogant, and obsessive; preferring our own company and with a disdain for other people. All of this can be true – on the outside.
But what others don’t see is the internal struggle, for in many respects we’re just like everyone else. We want to love and be loved, we seek friendship and companionship. We need encouragement and like appreciation. We want our weaknesses supported and forgiven and to be accepted for whom we are. But it’s harder for us.
Today, equality and diversity are among the watchwords for a civilised society. It’s considered a good thing to respect people’s differences and treat everyone as equals regardless of gender, race, age, religion, mental or physical impairment, sexual orientation and so on.
Aspies deserve to be on this list. Asperger’s is not a choice; it’s a neurological condition, a developmental disorder. It is not a mental illness or learning disability. As such is a lifelong condition. You can’t cure it, only learn to live with it. And we don’t suffer from Asperger’s, we experience it.
What is Asperger’s?
Asperger’s is an autism spectrum disorder, one of a group of complex disorders characterized by social impairment, communication difficulties, and restrictive, repetitive, and stereotyped patterns of behaviour. It is named after the psychologist who first identified it in 1943, Dr Hans Asperger.
It is sometimes referred to as ‘high functioning autism’ because symptoms are less severe than full-blown autism. For instance, Asperger’s does not typically involve a speech delay. People with Asperger’s often have good language skills, but their speech patterns may be unusual, and they may not pick up on subtleties such as humour or sarcasm.
About 4 or 5 in every 1,000 have the condition whereas around 10 in 1,000 are autistic. It is 4 times more prevalent in men as women.
Asperger’s is NOT a mental illness or learning disability. Aspies are not damaged and don’t need fixing. They just process the world differently. They see things from a different perspective.
We have no idea what causes it. Somehow developmental changes occur in the womb that ‘rewire’ the neural connections in the brain, but we don’t know for sure. We do know, however, that it is not caused by a child’s upbringing (for instance there is no connection with cold, aloof parenting), nor is it due to psychological or emotional damage. Twin studies show that there is a strong genetic component.
Many people report a sense of relief when diagnosed. They’re glad to have an explanation for their difficulties and, perhaps, justification for past behaviours. It can also be a trigger for better informed aspies to learn new ways.
We must understand that Asperger’s does not affect everyone the same. There is a huge variation in characteristics within the criteria, and aspie personalities can differ enormously. Even so, many aspie’s identify with the following features:
1. Difficulties understanding non-verbal communication
This lies at the core of aspies’ difficulties with social interactions.
Psychologists tell us that less than 10% of the messages we receive from others comes from the use of words. Nearly 40% comes from verbal cues such as tone of voice, inflexion etc. and the remainder – over 50% – from body language, gesture, facial expression and so on. Aspies do not naturally pick up on these in the same way as our neuro-typical (NT) friends.
Most people can tell another’s feelings from their tone of voice and body language or intuitively – we can’t. Consequently we have problems seeing things from another’s point of view. For example, we don’t always know if a person is smiling because they wish us well, or intend to deceive us. This means that we often misjudge people, especially when meeting them for the first time. We’re easily taken in, thinking others are our friends when they are not.
We’re good with words, though. We understand the literal meanings of words, but get confused when words are not used literally. For example:
‘I’ll cross that bridge when I come to it.’ (Which bridge?)
‘You’re trying to make a monkey of me.’ (What have monkeys got to do with it?)
‘You want jam on it!’ (No I don’t, I don’t like jam.)
This can get us into a lot of trouble, and we don’t always understand why. We’re particularly bad at picking up on sarcasm, playful teasing and figures of speech. Interrupting is another common problem since we don’t always pick up the social signals that enable conversations to move from one person to another.
We also have problems with the messages we give out. Our non-verbal communication is poor. Our facial expressions and gestures may be lacking or judged inappropriate, our voice and expression monotone. We often have a quirky sense of humour that isn’t always appreciated by others. Our hearts are in the right place but it doesn’t always show on our faces!
One feature of this is eye contact, a vital part of one-to-one interactions. As a result verbal conversation may not flow and we may come across as disinterested or rude. As a young man, when I met someone I would stare at the ceiling or the floor. I had to force myself to make eye contact with people. There’s a logical reason for this – since nonverbal cues such as facial twitches don’t mean anything to us or if we find them distracting, why look?
We cannot NOT communicate. We are constantly giving out messages, but when you have Aspergers you only pick up 10-20% of the full meaning. 80-90% is lost; consequently it takes longer to process social information.
2. Difficulties in relating to others in social situations
I have always dreaded parties, discos, informal gatherings, networking events and so on. I just don’t feel as if I fit in, and I often mess up when I try. I can recall making countless stupid remarks in an attempt to be witty or make conversation. As a twenty-something, alcohol often came to the rescue. If I was noticeably drunk, I reasoned, then no-one would expect anything of me, and I liked it that way.
We hate rules made by others, including and perhaps especially social rules!
Ironically, many aspies have no problem giving talks or contributing to meetings providing they can prepare. Aspies like sharing information and being in control, but being in unstructured situations brings on anxiety.
Aspies can learn social skills to some extent, but the inner feelings don’t easily go away. We can learn to adjust our behaviour to suit different social situations. We can learn to understand social rules and when something may cause embarrassment. Even though we are more Interested in making significant contributions to a conversation, we can learn to engage in small talk (however much we dislike it). We can learn how to start and end conversations, and how to avoid being over-critical.
Above all, we can learn to listen and show that we’re listening. Sometimes it’s an effort, but isn’t that true for NTs too?
Most Aspie’s have difficulty making friends. I only have one friend from school, one from my student days, and only a handful from the years since. We like to have friends, but usually have few or none. Why?
Firstly, obviously the problems of social interaction and communication make it hard to get to know people and let them know us. We get bored easily and shy away from socialising. We don’t feel the same need to belong.
Secondly, although we may believe we can be good friends, interesting and fun to be with, it has to be on our own terms. We are self-orientated. We can be stubborn. For example, we may not answer the phone unless convenient to us and resent uninvited visitors and interruptions, especially when we’re busy pursuing a cherished interest.
Thirdly, we don’t always hold back on the truth as we see it, and our narrow range of interests, bluntness, honesty and logic doesn’t necessarily make us popular. I used to try to make friends by being helpful, sharing my knowledge and interests and letting people know the right way to do things. Unsurprisingly they didn’t always appreciate my concern and I couldn’t understand why!
An ex-girlfriend called me a ‘people-pleaser’. At first I thought this was a compliment, but now I understand. Aspies hate rejection and are easily hurt. Sometimes we try to win approval by being over-friendly, over-helpful. We misunderstand the boundaries – and that’s a big part of having the condition.
Aspies’ natural instincts are to logical problem-solving rather than an emotional response. Perhaps that’s why people generally think that we don’t have emotions – but we do. Oh yes we do, and our emotions can run very deep.
The problem is, we can’t always say or show what we’re feeling, and at other times we display extreme emotion. We aren’t always sure which emotion is appropriate, and we may express our feelings in unpredictable ways. We are prone to angry outbursts, but anger is probably not the underlying emotion which may be anxiety, frustration, sadness or irritation. When things get too much and we can’t figure out a response we may yell and scream and smash things. It brings us no pleasure; we don’t enjoy making a spectacle of ourselves.
Alternatively, we may sink into a depressive episode. Anxiety and depression are a daily reality for most Aspies. It may not show, though: we may be calm on the outside while screaming on the inside. Many aspies succumb to chronic fatigue from the sheer effort of trying to appear ‘normal’ on the outside.
Whether we explode or stop functioning when things get on top of us, we call it a ‘meltdown’. Some meltdowns are sudden, intense, intimidating; some are slow burning and can take weeks to get over. I’ve had a slow burner every few years requiring clinical support. Two steps forward, one step back – the story of my life.
5. Restricted and repetitive behaviour
Aspies are known for our set routines and resistance to change. We have strong preference for routine, order and have preferred ways of doing things. A trained eye can easily spot that I have Aspergers from the way I organise my CD collection, display my books, plan my meals and arrange my photo albums! We can be very irritable and distressed if the unexpected happens or if arrangements are changed. Once a pattern is established or a plan is made, it’s stuck to resolutely.
Typically, we have an unusual preoccupation with a narrow range of specific subjects and an intense ability to focus on them. Aspies often seek out other people to talk to about our interests. The discussion is usually one-sided. We can be more interest in getting our knowledge across than listening to feedback.
We can be fixated on specific topics, objects, people, activities and so on to the exclusion of all else, and a dogged determination to pursue them. Perfectionism can be a problem – a fear of attempting we’re not sure we can excel at it. We can be very upset with ourselves if we fall short of our high standards.
Although I said earlier that people with Asperger’s don’t like social rules, rules are very important to us. As much as we hate other people’s rules, we like our own and insist that they be obeyed. For example, we may become angry with drivers who break traffic rules, a game is not played fairly or someone is caught cheating. And we don’t like to be hurried.
Ironically, aspies can be both hyper- (over) sensitive and hypo- (under) sensitive.
As a child, I was called ‘highly strung’. It was made clear that this was a bad thing and brought much criticism my way. I had a recurring dream which I still remember clearly to this day. I was curled up in a large wooden chest, listening to the sounds of the world outside and safe from them.
Over-stimulation can lead to odd movements to make us feel in control and which annoy others. ‘Stimming’ – self-stimulation – is common. This can take the form of tapping, playing with our fingers or hair, rocking, flapping, spinning or flicking objects.
People with Asperger’s are commonly intolerant of excessive sensory stimulation. For example:
- Bright lights may be difficult to cope with or even physically painful. They can cause sickness and headaches and prevent sleep.
- Similarly sounds. High pitched sounds can be painful. Small sounds made by others may annoy. Sleep is easily disturbed, for instance by a ticking clock, traffic noise or someone snoring. Sounds we control don’t bother us, though. We like our own music played loud but cannot abide other people’s.
- Certain textures or clothing may be highly irritating, especially tight clothing like ties, rings and clothes that scratch or itch.
- Being touched can cause irritation or discomfort, and tickling can be torture! We may be especially sensitive to kinaesthetic stimuli such as heat, cold, water, wind or rain.
- Certain smells or colours may irritate and cause stress, e.g. flower scents, spices or animal smells.
- Foods of certain tastes or textures may annoy or cause retching – e.g. custard, cheese, fat, slimy foods.
All these can lead us to seeking or avoiding thing that others find perfectly tolerable. For instance, crowds, hectic activity and busyness bother us. We find them threatening and confusing. Every sense is on alert, looking for danger, unsure if we should be afraid or not. This takes effort and is exhausting, another reasons why aspies are prone to chronic fatigue.
On the other hand, aspies can also be hypo-reactive to stimuli in the environment. We may not feel pain when hurt and leave an injury unnoticed. A full bladder or hunger pains may not register, and we may be unable to process certain sounds. Once again, our senses are letting us down.
7. Motor skills
People with Aspergers are often physically clumsy. Our motor skills are underdeveloped, our balance, fine motor skills and coordination poor. Naturally this causes problems with physical activities such as sports, intricate activities like modelling and handicrafts and dancing.
Knowing the struggles that Asperger’s people face and how they come across to others, it may surprise you that many top companies – including Microsoft (founded by aspie Bill Gates) actively seek them out for employment because of the qualities they bring. Asperger’s individuals can be remarkably intelligent. After all, Einstein was one, as was Alan Turing!
Aspies are often very articulate, numerate, logical good with detail. We have excellent concentration and dogged persistence. We are honest, loyal and dependable. Give us a role that meets our skills and preoccupations and we are in our element.
It may be that these are the qualities upon which civilisation depends. ‘After all,’ wrote Asperger’s diagnosee Temple Grandin, ‘the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialised around the campfire. Without autism we might still be living in caves!’
©David Lawrence Preston, 31.3.18
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