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Colette Morgan. Living as an Adult with Asperger’ Syndrome. “Normal” Life?. But…. Need for support from husband and family Daughter has syndrome, as did parents Am not good with small children – have no understanding of play/games/sport.
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Colette Morgan Living as an Adult with Asperger’ Syndrome
But… • Need for support from husband and family • Daughter has syndrome, as did parents • Am not good with small children – have no understanding of play/games/sport. • Friends also provide support when needed – have to get to know me very well • Am not good at being employee – too honest & blunt • Poor at certain kinds of work, e.g., management of staff, strategic-level tasks
For me, life with Asperger Syndrome is normal – it’s everybody else who thinks and acts chaotically, illogically and vaguely!
In social situations, I… • Can’t read facial expressions or body language & so am either silent or will talk endlessly; can’t read people’s intentions • Will lose interest or get distracted and wander off • Have no understanding of “chit-chat” • Don’t recognise faces and so most people look the same to me • Don’t understand social cues eg when to stop talking • Take everything, including metaphors and jokes, literally
When I talk I… • Don’t always understand what is being said, although I may sound articulate – have great difficulty in understanding abstract ideas • Take a long time to process what is being said – instructions really need to be written rather than spoken • Take sarcasm, jokes and metaphors literally and so get upset or have no understanding of what is being said. Sometimes thought of as aggressive
Routines and Rituals • I have a very fixed routine mornings and evenings which is difficult to change • I have taught myself to think of the lack of routine during the day as something that I have to expect. Weekends can be more difficult and so more support is needed.
“Obsessions” Currently my interests are: • Mathematics • Science fiction (specific authors) • Zen Buddhism • Enigma machines & their decoding • Autism • Cake decorating
Senses Hearing: Cannot bear certain noises eg dog barking, cooker hood, complex sounds eg supermarkets or parties Scared by shouting and arguments & sudden noises eg bangs, sneezing Brain has stopped much of hearing (although varies in level) and am profoundly deaf most of the time Seeing: Don’t like bright colours, busy surroundings, crowds, artificial lighting, fluorescent lights (as they flicker), bright sunlight. But I do love geometric shapes, symmetry and some architecture
Senses (continued) Textures: Cannot bear certain foods eg crumpets, tofu; certain fabrics eg wool, brushed nylon, waxed clothing, silk, satin; other things eg sand, rubber, skin against skin, labels in clothes, lace against skin, water on face and anything on hands (“sticky hands”) Cannot bear light touch Smells: Lots of smells I cannot bear eg chicken cooking, horses, dogs, tea, melon I do not acclimatise to smells Tastes: I have severe problems with certain foods eg melon, cheese, alcohol
Other traits • Dyspraxia – poor motor co-ordination: fall frequently, walk into people/walls/doors etc • Little understanding that other people think and know different things to me, eg will start conversations in middle, confusing listener • Total lack of tact – honest to the point of extreme rudeness • Lack of flexibility, e.g. to adapt to needs of others • Counting lights, squares, stairs etc • Lists for everything but may have difficulty in forward thinking • Cannot “multitask” eg drive and listen to radio at same time
And some more… • Only visual methods of learning work • Instructions need to be very precise • Teasing = criticism • Difficult to try new things – extreme fear of failure • Cannot think hypothetically • Constant anxiety • Cannot initiate contact with another person • But can speak to huge audiences without fear
And yet more… • Although am trained musician, am unable to clap in time with music • Difficult to be spontaneous • Tend to feel extremes of basic emotions – can’t define difference between eg anger & frustration • Catatonia eg when trying to get out of café with lots of tables and chairs around, or spilling drink over chair, floor & papers at same time
Anxiety and Agitation • “Meltdown”! • Hand-flapping • Rocking • Muttering • Chewing fingers and nails • But what help are: • Faceted balls, lava lamps, kaleidoscopes, coloured lights • Having “defrag” time • Being squeezed • Familiar task
Jobs • Several jobs lost through telling truth (whistle-blowing) • Don’t think of asking for help – don’t have insight into thoughts & abilities of others • Not good at thinking laterally, seeing big picture, considering possible outcomes of decisions, planning and prioritising • Problems switching activity to new one before original one is completed • Don’t always learn from mistakes • Won’t initiate work if it may fail • Difficulties with teamwork, line management, managing stress and change • Problems with misinterpretation of instructions • But very good at some jobs, especially if I am self-employed
Current Job • Trainer with Dewis Centre for Independent Living for last 9 months • Job is largely under my control • I talk to other staff about AS whenever opportunity arises • There’s a volunteer with AS there as well • I’ve known CEO for many years • So far, so good!
Home Life • I have a very supportive and patient husband – his family and our daughters live locally and assist me when needed eg shopping, appointments, socialising, telephone calls • I contact a couple of friends when I need extra support • The house is geared up to my needs (bubble & lava lamps, bland colour schemes etc): example of social model of disability in practice • The cat tells me when there is someone at the door etc (I am deaf)
Achievements • I haven’t killed anyone • I’ve got a job that I like now • I live independently • I have a number of academic achievements • I’m writing a book • I’m married, have children & grandchildren • I drive • I’ve been on holiday on my own
Support No professional support at all: • SS: “You’ve gone this long without support. Why now?”, “Your needs are not critical or substantial” or “Your family supports you” • GP: “I don’t believe you have AS” So: • Started a social group to get peer support • Use online forums etc • A lot of contact with NAS
Support I would like • I would really like to talk to someone every week for a few minutes, either as a debrief/counselling session, or for problem-solving – so quite low level to avoid major crises • If I lived on my own I would need a lot of support eg shopping, advocacy, dealing with changes, housing, crisis management
In General… • There have been a lot of challenges • There have been achievements but perhaps fewer than there might have been • I just wish that I had known that I had AS early in my life – probably would have reduced feelings of guilt at not being able to do things
But… • I can probably do things you can’t do. Some experts believe that the “obsessions” and the talents of people with AS throughout history have been what changed the world and moved it forward technologically and artistically, e.g. many believe that Mozart, Einstein, Newton, Da Vinci, Churchill, etc had AS. • People with AS are known for their loyalty, truthfulness and lack of deviousness. • I won’t judge someone on their appearance or body language as they don’t mean anything to me.
If there were a cure…. • Would I want to miss my chance of changing the world? • Would I want to change what is essential to my being me? • So what’s so wrong about me anyway? • Am I ill? Why would I need curing?
