Recognising Autism and Asperger's Syndrome

A Practical Guide to Adult Diagnosis and Beyond

Trevor Powell

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000346244
• Edition: 2
• Topic: Education
• Subtopic: Inclusive Education

Recognising Autism and Asperger's Syndrome is an accessible guide, offering information and guidance, self-help and coping strategies and illustrated throughout with personal quotes, vignettes and anecdotes from clients withautism with whom the author has worked clinically.

The book captures the individual stories, quotations and experiences, observed in adult autism diagnostic services, woven in with contemporary research, theory and clinical insights. It outlines the history of the condition and the present criteria for obtaining a diagnosis. With exercises, tips, questionnaires, psycho-educational work and advice sheets, this new edition also elucidates the female presentation of autism that has attained significance in the recent times.

The book is deliberately aimed at a broad audience of people: those who have just received a diagnosis and want to know more, those who are considering seeking a diagnosis, family members, relatives, friends and clinicians, including mental health workers, psychologists, support workers and all those who work with autistic people.

CHAPTER 1

Considering a diagnosis of autism

Five people's stories: who comes for an autism diagnostic assessment? what should be an ‘i’ in this heading – three times – look like an ‘l’?

Jenny – ‘it wasn’t my fault’

Jenny sat opposite me in my consulting room, a single woman in her fifties, who worked as an accountant. Her face was rather expressionless, and her eyes flickered between me and the carpet. Rather directly, before I had finished introducing myself, she said, ‘I think I’ve got a type of autistic brain. I want you to write a report to say I’ve got Asperger's syndrome, so I can tell my mother it's not my fault’. Jenny had seen a programme on television about autism, had researched the condition extensively and felt that it explained her lifelong difficulties. She had come to me for confirmation. She told a story of her difficult relationship with her now elderly mother:

On one occasion when I was about six years old, my mother who was pregnant with my younger sister said to me in a temper, ‘If this baby is anything like you, I don’t want it’. That has always stuck in my mind. I know I was a difficult child, but what I want to know is, was I awkward or did I have autism?

Jenny gave an insightful description of how her brain worked:

I have a brain that is attracted to detail. I love reconciling things – I don’t care if it's a balance of one million pounds; I need to get it right down to the last penny. I am extremely organised and am a systematiser. My DVDs are organised alphabetically; my books are sorted by author; and my clothes are arranged by type and colour – although most of my tops are grey or navy and my trousers are black. My kitchen cupboards are sorted by food groups, such as Italian, Chinese, Indian, baking, sauces and tins.

However, when talking about her social life she commented,

I have a small number of friends but I find meeting people is like going to the dentist – a necessity. I can never think of what to say and am never sure when it's my turn to talk. I always try and avoid the firm's Christmas party and on the odd occasion I have gone, I’ve felt exhausted and ill afterwards.

Another incident narrated from Jenny's childhood provided further insight into her social difficulties. She told me,

I must have been about five or six years old and I was happily playing on my own with my Lego and stuffed animal collection when my mother suggested I should go and play in the sandpit with other children. I said to my mother: ‘I don’t know what they’re doing. I don’t know the rules. I’d rather stay in and play on my own.’ I remember her being angry with me and calling me ‘awkward Annie’.

Jenny felt that her mother could not understand her and always thought she was being deliberately difficult as she would only eat certain foods, didn’t like being picked up or cuddled and had to have things in a particular way; otherwise, she would throw tantrums. Jenny did receive a diagnosis and felt appreciative, tearful and relieved. I felt moved by her story.

Stuart – ‘an introverted introvert’

Stuart was 22 years old, with long blond hair in a ponytail, and was accompanied by both parents, who were sitting either side of him during the assessment interview. His mother said, ‘I’ve told him he can’t spend the rest of his life in his bedroom. All he does is play on that computer, sleep and eat’.

Stuart mumbled, ‘I’m OK, I’m happy, why don’t you just leave me alone?’ The referral had come from a psychiatrist who had diagnosed Stuart with depression, agoraphobia and social phobia. Stuart had left school with good A-level results – A grades in physics and maths. He had started a course at university on multiplayer game design but had dropped out at the end of the first year. The academic work had not been a problem, but Stuart had become increasingly isolated, finding social situations really stressful. He had said to a fellow student on the first day of the term: ‘I am an introverted introvert. I do not find social situations invigorating like most people, but draining … don’t take it personally’. After returning to the security of the family home, his parents and the cocoon of his bedroom, Stuart had become more avoidant and further isolated. He would not catch a bus on his own and wouldn’t answer the doorbell or the house phone.

As a child, Stuart had been bullied and teased at school because he was different. The other children would find his detailed and pedantic way of explaining things amusing and would tease him in the playground just to ‘set him off’. Stuart was like ‘a little professor’ and related better to people older than his peers, preferring to sit and play a board game with adults. His father said, ‘he never attempted anything unless he was 110 percent sure he could do it; walking, swimming and talking – everything has to be precise and just right’. As an infant, Stuart had started to walk very suddenly, in a very ‘all or nothing’ manner, with not much crawling or tottering. This ‘all or nothing manner’ was further illustrated in childhood when he told his parents, ‘I’m not wearing a nappy anymore, I don’t need to’. Stuart was bored at preschool because he wanted to do his sums and didn’t want to play with the other children or draw; he had learned his alphabet before he went to school. He commented,

I was looking forward to going to school because I thought I’d get an education. But on the first day we spent most of the time colouring. I thought this was ridiculous and felt disappointed and frustrated. I was more advanced compared to the other children and would go around the class helping my classmates to speed the lessons up. Towards the end of the infant school they took me out of the class and left me in the library with all the books and said ‘get on with it’. That was great for me because I could study palaeontology and dinosaurs.

Stuart had been diagnosed by the psychiatrist with social phobia, but careful questioning revealed something about the source of his anxiety. Stuart explained, ‘My anxiety is created by random events … I need to have things planned; I want a degree of certainty; I’m afraid that if I don’t know what is coming, I’ll do something wrong; I’ll create a problem; I won’t know how to cope’. When Stuart dropped out of university, he planned to design his own computer games but soon realised that he needed to work as part of a team to do this effectively. Stuart's reaction to getting a diagnosis was a mixture of anger and relief. He said: ‘If the incidence of autism is one in a hundred, why does it have to be me? But I suppose I am relieved to know … it will take me time to process, I tend to keep my feelings in a box’.

Lara – ‘sensory overload’

Lara was a 40-year-old woman who had been arrested and charged with attempted bodily harm and assaulting a police officer. The duty court solicitor, who had a nephew with autism, thought Lara might be ‘on the spectrum’ and requested a diagnostic assessment. Lara was unemployed and lived with her parents. Every Tuesday morning, after cooking her breakfast, carrying a lunch box which always had exactly the same items in it, she would catch the 09.45 train to London, on her own, to visit the Natural History and Science Museums. She enjoyed examining the exhibits and making her own catalogue. Lara found the journey stressful as she didn’t really like travelling on the underground, but she coped because she had a set routine and stuck with it, not liking change.

One day there was a closure on the underground and Lara had to take a different tube. The underground was very crowded, and people were funnelled, shoulder to shoulder, barging and shoving down a narrow concourse. Lara's anxiety, already high due to her change of routine, became extreme because of the noise, the crowds and the people touching her. ‘Please don’t touch me’, she shouted out to a man pushing into the back of her. The man ignored her. ‘Don’t touch me, stop it’, Lara shouted. She then turned and hit the man with a rolled-up newspaper, and a scuffle ensued. Lara tried to run away when they reached the concourse, but her assailant grabbed her in front of a transport policeman. The policeman tried to separate them, but Lara lashed out again, punching the police officer. Lara was arrested and put in a cell. She commented, ‘I couldn’t help it. I was completely overwhelmed, with the noise, the lights, the crowds, being touched, the change in my routine; I had a complete meltdown’. The man Lara had hit said that he would drop the charge if she apologised and admitted that she was in the wrong. But Lara was adamant that she wasn’t in the wrong; she had only hit the man to defend herself after telling him twice to stop pushing and touching her. The man hadn’t heeded her warnings. She could have apologised and walked away with a caution, but Lara had a very firm set of beliefs about right and wrong; she found it hard to understand others’ viewpoints. Lara was later diagnosed with autism, and the accompanying report explaining her hidden disability provided more insight for the judge.

Jack – ‘needs an interpreter’

Jack was a 40-year-old IT specialist – a systems architect – who was accompanied by his wife, a social worker. He had come for an assessment because he was having difficulties with his manager at work and was involved in a disciplinary hearing. Their son Oliver had recently been diagnosed with autism, and both his wife and the diagnosing paediatrician thought Jack might have the condition too. Jack commented about his son's diagnosis, ‘I don’t really think there is anything wrong with him – he's just like I was as a child’. Jack described that in childhood he enjoyed lining up his Thomas the Tank Engine models by length, colour and personal favourites. According to Jack, ‘My life was transformed with the introduction of the Spectrum ZX computer’. He said that at college he was rather isolated, having only one friend and no idea how to get a girlfriend. His wife, Sarah, commented, ‘I noticed him, but he was hopeless and had absolutely no idea that I liked him, even though I was giving him all the signs, like always saving him a seat next to me at the Halls of Residence dining room – I had to do all the running’. Jack commented, ‘Yes, Sarah has been a lifesaver for me. I would have literally been lost without her. She helps me with most aspects of my life’. Sarah commented about their marriage: ‘I love him because he is unusual, fascinating and very, very honest and loyal even though he has an awkward disposition. There is no bullshit with Jack, but there is also not much overt affection’. Jack had recently experienced problems at work communicating with his manager, and on a number of occasions had not completed the tasks he’d been asked to do. Sarah commented,

Jack just doesn’t understand what his manager wants; it's as though they both speak a different language, at cross purposes, which means the meetings they have are enormously frustrating. He needs very specific instructions - nothing vague. He might lose his job. I saw a sign outside in the clinic reception saying ‘interpreter available’ and thought, ‘yes that is what Jack needs when he speaks to his boss, someone to translate and explain what each is saying to the other.’

Emily – ‘female presentation and misdiagnosis’

Emily was a single 32-year-old actress who had been seeing a therapist and psychiatrist for the previous 10 years. She had recently read an article in a magazine entitled, ‘The female presentation of autism and misdiagnosis with Borderline Personality Disorder’ and thought, ‘that sounds exactly like me in every count’. At the age of 18, she had been diagnosed with an eating disorder but said that she was not obsessed with calories like the other girls and that her problem was more, ‘selective eating and eating at exactly the same time every day’. She had later been given a diagnosis of borderline personality disorder on the basis of her difficult childhood, her stormy relationships, episodes of self-harm, sexual promiscuity and episodes of emotional breakdown that on two occasions had necessitated admission to a psychiatric hospital. She felt that she come to an impasse with the therapist over a number of issues.

Emily's father was a physicist and her mother a linguist with whom she had a ‘stormy relationship’ – her parents had separated when she was 10 years old. As a child, Emily didn’t like being held and showed no element of fear around strangers. She was not a ‘girly girl’, but a tomboy who hated dolls. People were constantly surprised by the sophistication of her vocabulary. She reported that she had watched the film Pollyanna over 100 times as a child trying to work out how to be a girl. Emily had been to drama school, starred in a TV series and some films, but always had trouble with the social side of being an actress. Emily reported,

The impasse with the therapist occurred in a number of areas, particularly with regards to the extent that I could change my life. I was not comfortable with being pushed to talk all the time, with the theory that the more I talked the more I would uncover some deep-seated trauma. I wanted someone to give me practical advice on what to do and I didn’t want to desensitise myself to coping with social situations. However, the main area of disagreement was that she felt that I was the victim of sexual abuse, but I felt that I would often create situations deliberately. I was sexually curious and active as a younger child with older children. I also wanted practical help because I have ‘an absolute inability not to tell the truth if the subject arose or if I observed an injustice’. I wanted to learn how to keep my mouth shut, be ‘appropriate’ and play the game like everybody else.

Emily was greatly relieved to get a diagnosis of autism and said that it helped her to understand herself more – she now did not view herself as being evil or defective, but just different. She found a therapist who specialised in autism and began to appreciate how the condition had shaped her life. Emily stopped seeing the psychiatrist and taking medication, saying she felt more stable. She reduced her sexualised behaviour, stopped her self-harm and felt more in control of her life.

What is autism or Asperger's syndrome?

Each of these five individuals has something in common; struggles in life which eventually led to a late diagnosis of autism or Asperger's syndrome. Receiving a diagnosis helped each of them in different ways: Jenny found greater peace with herself, Stuart and Emily received a more appropriate psychiatric diagnosis and got more tailored help, Lara avoided going to court and Jack managed to keep his job. Autism is hidden, which is why it had not been identified earlier in those five people's lives. To all intents and purposes, the person appears perfectly normal, often very intelligent, living relatively independently, with near-typical language skills, but under the surface, there are a number of subtle hidden difficulties. These five people – Jenny, Stuart, Lara, Jack and Emily – are on the higher end of the autism spectrum, or scale, that is, they function relatively independently, while at the lower end is ‘classic autism’, a more disabling condition.

I have a clear memory of having worked with a man I shall call Lucas, many years ago, who had classic autism. Lucas had a below-average IQ with little speech and an array of repetitive stereotyped behaviours such as rocking, insisting on eating the same food and repetitively watching the same DVDs of Thomas the Tank Engine and Mr Bean. He lived in a residential care home, dependent on a team of support workers for many self-care needs. He rarely made eye contact but, when he went to the supermarket with his carers, he had a tendency to stand very close to strangers and stare at them inappropriately. He had no particular friends, apart from the care staff who looked after him, he had never worked or had a girlfriend. Lucas liked mechanical toys like Meccano and particularly liked taking televisions apart and reassembling them. In certain circumstances, he became very stressed and experienced what the staff referred to as a ‘meltdown’ when he would shriek and bite his hand.

What have our five case studies and Lucas got in common? They are all considered to be situated on the same underlying autism spectrum or continuum – illustrating how broad and diverse that spectrum is. All have difficulties with communication and in dealing with the social and emotional world, accompanied by unusually strong, narrow interests and repetitive behaviours. However, it could be argued that their differences are greater than their similarities. This is the debate that rages within the world of autism, between the ‘lumpers’, who say, ‘It's all the same and we’ll call it autism’, and ‘splitters’ who say, ‘People at the,...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Contents
• Preface
• Acknowledgements
• Chapter 1: Considering a diagnosis of autism
• Chapter 2: Theories and facts about autism
• Chapter 3: The diagnostic assessment
• Chapter 4: Diagnosis – in my own words
• Chapter 5: Processing information: Cognition, language and sensory issues
• Chapter 6: Emotions and the social and relational world
• Chapter 7: Mental health and related issues
• Chapter 8: Work
• Chapter 9: After diagnosis: Reactions, disclosure, stages and advice
• Appendix 1: ‘Being Me’ group: Exercises for a 6-week post-diagnostic course
• Appendix 2: Glossary
• Appendix 3: Useful contacts, organisations and websites
• Appendix 4: The adult autism-spectrum quotient (AQ)
• Appendix 5: References
• Appendix 6: Autism/Asperger's syndrome diagnostic assessment
• Index