Publication date 30th April 2016

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Different or Disabled

Charlotte’s son, John, born very prematurely in the 1970s, is on the autism spectrum (Asperger’s syndrome), as well as having dyspraxia, ADHD, and special educational needs. Even though there was virtually no professional help, he has developed into a happy, fulfilled and independent adult who works in a job which stretches him intellectually and creatively. This book describes the parenting methods Charlotte used in order to help her son reach this position, the decisions she made with the reasoning behind them, the challenges met, and what (with the benefit of hindsight) could have been done better. It provides encouragement and hope as well as ideas and understanding. A key feature of the book is John’s input; his voice can be heard throughout explaining why he behaved as he did and how the world felt to him.

Charlotte’s book differs from many others in the field of autism; it looks at many aspects of child development from the point of view of a person on the autism spectrum as well as their parents and also provides links to the literature. Topics covered include: child rearing and play, sensory sensitivity, fear of change, motor problems, language and communication, special interests, memory and concentration, school issues, siblings, assessments and diagnosis.

The book is intended for a wide readership; parents and carers, those on the spectrum and those who suspect they might be, health and educational professionals (qualified and in training), researchers and possibly employers who come into contact with people on the spectrum.

I can see immediately that this is a very valuable book which will be helpful to many other parents and also to many researchers… I think that your endeavour to tell your story from the point of view of self-help is going to be inspirational. I completely agree with you that it is usually in vain when parents wait for experts to tell them what to do and they really do know better themselves – after all, they ARE the experts for their own child. I like the idea that you have included practical points that have proved to be helpful.’Prof Uta Frith, Institute of Cognitive Neuroscience & Dept. Psychology, University College London

This looks to be really great!… I think it is very worthwhile… I am most impressed… you seem to have a very good direct writing style and the content may be slightly different to that you would find in ‘professional’ books, but that is its strength. It looks as if you are dealing with the range of issues that are omitted from many books but will be of great interest to parents.’ Prof Rita Jordan, Emeritus Professor in Autism Studies in the School of Education, University of Birmingham

Introduction

1. SETTING THE SCENE

Different, disabled, disordered…?

An overview of our parenting methods

There’s a fundamental disagreement between those who believe that there’s something seriously wrong with people on the autism spectrum (followers of the medical or deficit model) and those who believe that autism is just an expression of human diversity (followers of the difference model). Both these models are discussed briefly as well as the terms disabled, disordered, different and normal. Our son never considered himself to be disabled, rather different and constrained by the fact that he had to operate in a world constructed without regard to his differences.

An overview of our parenting methods is described. These were based on the fact that we never thought he had a disease to be cured and didn’t try to make him like everyone else, i.e. ‘normal’.

2.  IN THE BEGINNING

Premature labour

John’s time in hospital

Possible outcomes for very premature babies

This chapter describes the circumstances surrounding John’s very premature birth and his early weeks in hospital. John was very ill indeed and had the first operation of its kind on a tiny baby in the UK. Very premature babies have mixed outcomes and some of the research in this field is described briefly.

3. FOOD

Breastfeeding

Weaning

Table manners

Diet and behaviour

Food related activities

Adulthood

Some children on the autism spectrum are very picky eaters and some can’t cope with the social aspects of mealtimes. This chapter describes what we did to ensure that John ate a wide diet and enjoyed mealtimes.

4. SLEEP

Using a sling

Waking at night

John’s bedroom

Sleeping pattern

Anxiety and sleep problems

Many people on the autism spectrum have problems both going to sleep and sleeping through the night. This chapter describes John’s sleeping patterns from a tiny baby until adulthood.

5. HEALTH  

Height and weight

Colds and coughs

Hearing

Allergies

Immunisations and vaccinations

Eyesight

Teeth

Digestive problems

Other medical

Mental health and well-being

     Anxiety and depression

     Emotional overload

The subheadings above list the health topics covered in this chapter.  Considering John’s very difficult start in life he has been very fortunate to experience pretty good health to date. Only anxiety, an inability to control his emotions, poor eyesight and hay fever have caused him significant problems; however, perpetual colds and digestive problems have also been issues at various times in John’s life.

6. SENSORY ISSUES

John’s early days at home

Clothes

Washing

Temperature

Hair

Pain

Light intensity

Eye contact

Visual processing

Sound

Balance

Smell

Many children on the autism spectrum have unusual sensory sensitivity and John is no exception. This chapter explains how some of John’s problematic behaviours can be attributed to sensory issues.

7. TOILET RELATED

Learning to use a toilet

Getting clean and dry at night

Using toilets outside our home

It isn’t unusual for the parents of autistic children to have some concerns related to the subject of toilet training. Using a toilet rather than a potty, becoming clean and dry at night and using public lavatories have all been issues at various times in John’s life.

8. MOTOR RELATED  

Paediatrician reports

Crawling and walking

Manual dexterity

Construction toys

Cutlery

Drawing and painting

Scissors

Writing

Repetitive strain injury (RSI)

Self-care

Posture

Sporting activities

Motor tics

This chapter describes the many aspects of childhood which were particularly difficult for John as a result of a variety of motor deficits.

9. CHANGE

Fear of change

How we coped with John’s fear of change

John’s routine as a young child

Flexibility versus structure

Change as an adult

Like many people on the autism spectrum, John has always found any change (whether expected or unexpected) a major cause of anxiety; as a child, tantrums were often the result. This chapter depicts how a change in routine makes John feel and how we managed this aspect of  John’s life.

10. LANGUAGE  

Learning to speak

Vocabulary and grammar

Wechsler intelligence scale for children (WISC-R tests)

Literal interpretation

Humour

Foreign and computer languages

Although John is on the autism spectrum, his command of the English language has always been excellent and this ability is described in this chapter. Unfortunately this ability doesn’t mean John was a good communicator.

11. COMMUNICATION

Non-verbal communication

Conversational grammar

Interrupting

Conversational content

Questions, questions, questions

Relationships with peers and adults

Rude and naughty

Social  gaffes

Groups and team-working

The internet

Lying

Asking for help

Vocal characteristics

     Very fast speech

     Flat intonation

     Volume control

     Incomprehensible pronunciation

     Stammer

Talking to himself

What could have been done differently?

Communication difficulties are at the core of what makes someone autistic. John’s communication problems (which are described in this book) set him apart from his peers. Things that may have improved John’s communication skills as a child are discussed. Reasons for some of the major improvements seen in John’s 20s and 30s are noted.

12. PLAY  

Solitary play

Imaginative play

Social play within the family

     Sharing

     Board games

Social play with peers

     Birthday parties

Play forms a crucial part of any child’s development and the play of children on the autism spectrum is often different from that of their peers. This chapter describes how John played, the things he enjoyed and the situations he couldn’t cope with.

13. CONCENTRATION

Focused concentration

Special interests

Hyperfocus on special interests – problem or asset?

Potential benefits of special interests

     Employment

     Friendships

Perfectionism

Distractibility

People on the autism spectrum can possess extraordinary powers of focussed concentration when the subject interests them and John is no exception. How this feature has been exploited in John’s life is discussed in this chapter. Unfortunately (again like many on the spectrum) John is also easily distracted if he isn’t interested in a particular topic. He is plagued by distracting thoughts over which he has little control and his concentration is easily broken by external noise. The impact of this on John’s life is described as well as techniques he has used to help him manage these problems.

14. MEMORY

Long-term memory

     Words

     Techniques for improving long-term memory

     Exams and learning

     Photographic memory

     Rote learning

     Episodic memory

Working/short-term memory

     Organisation and planning

     Techniques to improve working memory

Like many people on the autism spectrum John has an excellent long-term memory; this chapter discusses some of the techniques he uses that probably contribute to this facility. Unfortunately John also has difficulties with many ‘executive function’ abilities including working memory. Some of the methods that John employs to help with these deficits are described.

15. READING AND SPELLING  

Being read to

How I taught John to read

Would I use the same methods now?

How John reads

Why reading has been so important to John

Books John loved and hated

Spelling problems

Why couldn’t John spell?

Teaching John to spell

The outcome

Cognitive tests would suggest that John has problems with visual sequencing. This, plus working memory deficits and difficulties coping in a classroom situation, would predict poor reading outcomes. Fortunately I taught John to read before he started school and my methods are described in this chapter. Unfortunately I didn’t teach John to spell before he started school because he didn’t have the motor skills to control a pencil. A few years later I taught him at home (because he seemed incapable of learning at school) and again my methods are described. He became an excellent reader and speller and reading has been crucially important to him throughout his life. I include a section on the books John loved and hated as this provides an interesting insight into his personality and character.

16. SCHOOL

Nursery school

Infant school

Junior school

Choosing a secondary school

     Criteria and choices

     Outcome

     Could we make a better choice these days?

     Mainstream school for children on the autism spectrum in the21st century

John’s experience in mainstream school, which was very mixed and largely unsatisfactory, is described in this chapter. Children like him are very difficult (if not impossible) to teach in large classes. Bullying has been a significant problem.

17. THE COMPUTER

The early years

Next steps

Should computer access be limited?

Benefits of the computer – psychological

Benefits of the computer – social

     Close Friends

     The Internet

     Specific Software Applications (Apps)

        Benefits of the computer – motor skills

        Benefits of the computer – intellectual and creative

Benefits of the computer – Career

Although several authors note that people on the autism spectrum often have a real aptitude for computing, I don’t think the benefits of this relationship have been emphasised sufficiently, hence the inclusion of this chapter. I’m convinced that exploiting John’s ability to focus so intensely on something that interested him, introducing him early to a topic (computer programming) that I thought he would enjoy and then allowing him as much time as he needed to indulge his passion have been the main reasons why he’s such a happy individual whose life isn’t dominated by failure. I can’t imagine what life would have been like for John without computers. They have played to his strengths, enabled him to be part of a social group and provided him with a challenging and enjoyable way of earning a living.

18. THE ARTS

Music

Art

Television, cinema and  theatre

     Television

     Cinema

     Theatre

Although music has always played an important part in John’s life he had difficulties learning the piano because of poor manual coordination and didn’t progress very far on the French horn because of his unwillingness to play in a group.

The unusual way I introduced my children to art galleries is described in this chapter as well as John’s surprising relationship with film and television. He has developed from a child who rarely watched television or films (because he couldn’t cope with them) into an adult who has turned one room in his house into a home cinema.

19. JOHN’S SISTER – LYDIA

Lydia’s relationship with John

Autism, family life and the impact on Lydia

Lydia’s contribution to this book has been quite an eye-opener for me. This chapter describes how Lydia feels about her brother, how she believes her life has been affected by living with a brother on the autism spectrum and what we could have done in order to make life easier for her.

20. ASSESSMENTS

Developmental screening

Statement of Special Educational Needs (SSEN or Statement)

Cognitive testing: the WISC-R test

Other Assessments

Autism Research Centre screening questionnaires

This chapter  describes John’s assessments as a child (including the SSEN and WISC-R) and how they failed to delineate and address John’s difficulties. As an adult John completed the Autism Research Centre screening questionnaires and the results are compared with those of his sister and parents.

21. DIAGNOSIS AND LABELS

Advantages of receiving a diagnosis

     Explanation for a child’s differences

     Access to information, early intervention and support

     Parents’ role

Possible issues related to receiving a diagnosis

     Delays in receiving a diagnosis and advice

     Reactions to a diagnosis

          Grief

          Chasing cures

          Marital relationships

          Recognising the child’s strengths

     What comes after the diagnosis?

     Stigma and bullying

     How a diagnosis may be misused

     Inadequate diagnosis

          Symptoms rather than objective laboratory measures

          Disorders or variations in the human condition?

          Different professionals, different diagnoses

          Comorbidity

     Revealing a diagnosis

John’s diagnosis

This chapter describes the obvious advantages of receiving a diagnosis but also discusses many issues/pitfalls related to the whole process. Receiving a diagnosis is not the same as waving a magic wand.

APPENDICES

1 Extracts from John’s medical notes

2 References used for prematurity outcomes

3 Head, weight and head circumference

4 Hearing test results – extracts from medical records

5 Vaccinations and immunisations

6 Paediatrician reports on motor development

7 Extracts from a report written by a paediatric physiotherapist

8 Weschler intelligence scale for children – Revised (WISC-R)

9 John’s explanation for his difficulties with social interactions

10 Internet communication and the social grapevine

11Insights into John’s imaginary life

12 Marbles and the imagination

13 John’s favourite authors and the reasons why he likes them

14 Extracts from a letter written to John’s class teacher when he was nine years old

15 Letter providing reasons for wishing to transfer to the local mixed secondary school

16 Story written by Lydia when she was six years old

17 A Testament of Experience by Lydia (aged 15)

18Letter written to me in anger by Lydia when she was 13 and John 14½

19 Extracts from letters sent by doctors

20 Education Act 1981 – Statement of Special Educational Needs

21 Some childhood screening tests, questionnaires and checklists

22 Results of John’s WISC- R tests

23 The Empathy Quotient – John’s responses

24 The Systemizing Quotient –  John’s responses

25 The Autism Spectrum Quotient –  John’s responses

26 The Childhood Asperger Syndrome Test (CAST)

27 John’s major characteristics compared with those associated with a range of conditions.

28 Resources

29 Abbreviations

30 References

Our son John[1] was born almost 11 weeks early in the 1970s. He had a life-saving operation when he was two weeks old and remained in hospital for a total of 11 weeks. As a child John had great difficulty relating to and communicating with his peers, coping with change or noise and engaging in both fine and gross motor activities such as writing, dressing, and sport. He had very poor organisational abilities, couldn’t concentrate (unless he was particularly interested in something) and couldn’t copy from the board, spell or take notes. His behaviour could be very challenging. He would have major meltdowns caused largely by frustration or panic and was easily overwhelmed by his emotions. On the other hand he had an excellent memory, possessed a fund of general knowledge, was very articulate, had an engaging sense of humour, a marvellous eye for detail and an extraordinary ability to focus and concentrate for long periods of time on anything he was passionate about.

John was given a Statement of Special Educational Needs at primary school but no diagnoses were made. These days a child with similar characteristics would probably be diagnosed with an autism spectrum disorder (Asperger’s syndrome), attention deficit disorder, dyspraxia and possibly dyslexia. Almost no help was provided at the time because no-one seemed to know what to do; we had to find our own way of parenting our ‘different’ child.

John, who will soon be 40, is a happy, fulfilled and independent adult. He’s at ease with himself, lives in his own home (which he paid for himself) and works in a job which he loves and which stretches him intellectually. We are delighted at the way things have worked out; he has found his own niche in the world and achieved his potential. When John was young and we were very concerned about his future we never imagined to what extent things would change for the better and how he would continue to develop throughout his 20s and 30s. However,  there was no ‘magic cure’. We didn’t try to make him ‘normal’ and he would still be considered to be on the autism spectrum.

This book looks at many aspects of our son’s development. It describes the parenting methods we used, the decisions we made with the reasoning behind them, the challenges we met and what (with the benefit of hindsight) we could have done better. A key feature of the book is John’s input; his voice can be heard throughout explaining why he behaved as he did and how the world felt to him. I have also included many quotes from literature in the field which puts our experience into a wider context and have, wherever possible, provided references which could be of use to readers. Although the chapters are designed to be read in any order (with cross references provided to other chapters where necessary) I would recommend that Chapter 1 is read first.

In writing this book I have sought to provide ideas, understanding, encouragement and hope for parents, carers and anyone else coming into regular contact with verbal children on the autism spectrum. Although much more is known these days about children like John (and many more children like him are being diagnosed), there’s insufficient funding to provide all the support that carers might require. For this reason a book like mine may be particularly useful. I agree wholeheartedly with Lise Pyles[2] who wrote:

For us, the things that helped the most were the things we did ourselves. Most of them were free or cheap. The best things we did were not to wait for others to come to our rescue, and to refuse to believe people who spoke bleakly about our son’s future. A positive attitude and persistence can do a lot.

[1] All names in this book have been altered in order to preserve anonymity.

[2] Pyles, L. (2002) ‘Hitchhiking through Asperger Syndrome’. London: Jessica Kingsley Publishers.