Gillan Drew - An Adult With an Autism Diagnosis: A Guide for the Newly Diagnosed

AN ADULT
WITH AN
AUTISM
DIAGNOSIS

A Guide for the Newly Diagnosed

Gillan Drew

Jessica Kingsley Publishers
London and Philadelphia

CONTENTS

Introduction

When I was diagnosed with Aspergers Syndrome, an Autism Spectrum Disorder, at the age of 28, I was sent away without so much as a leaflet to explain what it all meant. As you can imagine, I was left with more questions than answers. What exactly is autism? Why do I have it? How can it be treated? What does it mean for my life? How does it affect work? How does it affect relationships? What are the long-term consequences? Can I still get married and have children? Should I get professional support? Where should I live? How do I explain this to people? Why was I not diagnosed as a child? Will things improve?

Unfortunately, there was nobody I could ask and nobody who could answer. As someone whose only knowledge of autism came from the movie Rain Man , I discovered to my dismay that there were no books catering for the newly diagnosed adult. The vast majority of the literature on autism focuses on children with the condition, and those books that do cover adults assume you either received the diagnosis as a child and therefore understand an awful lot about it already, or are qualified as a clinical psychologist. I craved a book that could help me understand what it means to be diagnosed with autism as an adult.

Failing to find it, I decided to write it myself to help others come to terms with this life-changing news.

The journey to diagnosis and beyond

The journey to the diagnosis can be a long and arduous one. Before I discovered I had autism, my life was both challenging and chaotic. I bounced from job to job and place to place, trying and failing to make things work. I struggled to make friends or fit in, and on the rare occasions when I had relationships with others they were turbulent and unhealthy. My whole life I felt that I was different from other people, but wasnt able to explain why. I was bullied and ostracized, last picked at sports and never invited to parties. I was lonely and depressed, self-harmed and had several breakdowns. I was unable to function in a world in which I didnt seem to belong.

The psychological community misdiagnosed me several times, put me on various different antidepressants and mood stabilizers, and sent me for all manner of psychological therapies and interventions. None of it made sense until one day my mother watched a programme about a boy with Aspergers who seemed in every way identical to how I had been as a child. The more she researched Aspergers Syndrome, the more she realized I fulfilled all the diagnostic criteria. The psychiatrists were reluctant to send me to the Aspergers specialist as they were adamant I did not have it. When they eventually agreed, the specialist told me within minutes that I was absolutely on the autism spectrum.

I therefore know what its like to live most of your life struggling to fit into society, passed from pillar to post by the mental health community, aware that something is wrong but unable to figure out what it is. I also know what it feels like to receive a diagnosis of autism later in life and the problems you might have adjusting to or accepting that diagnosis. Alongside the relief that you now have a reason for your troubles, it is common to feel a mixture of anger, sadness, fear and shame. I felt very lost and alone, miserable about the present and pessimistic about the prospects for the future, but let me reassure you that being diagnosed with autism does not make you any less of a person and does not prevent you from achieving a place in this world.

The diagnosis is an opportunity to take stock of your life, learn about yourself, and move forward with a new-found awareness of your capabilities. Looking back over my life, I have been able to work out why I did certain things and why certain situations didnt work, and it has helped me explain and come to accept the good and bad things that have come from living with the condition. Some people with autism see it as an illness, a disease, the bane of their lives, and wish they could be without it; others embrace it, and acknowledge that it is a part of them. All I know is that I would not be who I am without it.

High-functioning autism is not a disability but a different way of seeing life, and we should focus on our skills and the things we are capable of rather than the things we cannot do. We are defined by our abilities and our potential, not our problems. Whether you are male or female, young or old, being diagnosed does not have to be something negative for me, it was the best thing that could ever have happened. Since my diagnosis, my life has improved no end. I am stable, more self-aware, better able to live with my condition. I have a home, I am married to a woman who also has Aspergers Syndrome, and we have a daughter. These are all things I did not think I would ever be able to achieve.

Being diagnosed is not the end of your journey, but a change of direction along the way to a better life ahead. I hope that this book will help you take the first steps towards a happier, healthier and more fulfilling future.

A note on terminology

Since the mid-1990s people all over the world have been diagnosed with Aspergers Syndrome (AS), a form of high-functioning autism that was included in the two main diagnostic tools available to the psychiatric community: the tenth edition of the International Classification of Diseases (ICD-10) and the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). However, with the publication of DSM-5 in 2013, Aspergers Syndrome, along with a number of other long-standing autistic disorders, was eliminated and merged into a new diagnosis called Autism Spectrum Disorder (ASD). In order to accommodate such a range of conditions and abilities, ASD is ranked according to severity, from Level 1 (high-functioning individuals requiring support) to Level 3 (low-functioning individuals requiring very substantial support). It is likely that the next edition of the International Classification of Diseases will similarly fold the separate autistic disorders into the single category of Autism Spectrum Disorder.

This change has not been without controversy, and the rate at which it has been implemented depends on where in the world you are living. It is therefore very difficult to talk about the diagnosis in a general sense as some people will be diagnosed with AS and others with ASD. However, Aspergers Syndrome is roughly equivalent to the newer category of Autism Spectrum Disorder Level 1, in that both describe individuals with high-functioning autism and the criteria for each are very similar. This book therefore uses the inclusive term autism to refer to both Aspergers Syndrome and Autism Spectrum Disorder Level 1.

PART I

Autism

THE BASICS

For many people, being diagnosed with autism is a life-changing event. However, it can take a long time to process this new information and accept the diagnosis, particularly when you dont have enough information about autism to know how to react or even what it is you are reacting to. There is often a period of adjustment during which you question everything you thought you knew, which can leave you feeling confused and insecure. It is common to doubt the diagnosis or deny it altogether, and you might be unsure who you should tell, who to go to for help, or even what help you might need.

This part of the book is written to help you during this time. In particular, it explains what autism is, how it affects you, and where to find out more. It dispels some of the unhelpful myths that exist about autism, offers advice for discussing your condition with others, and provides explanatory models that can help illustrate different aspects of autism. It also gives details on the services and therapies that can assist you both during this time and moving into the future.