The Subtle Spectrum: An Honest Account of Autistic Discovery, Relationships and Identity

Joanna Grace

• Publisher: Routledge
• Year: 2021
• ISBN:
  9781000390803
• Edition: 1
• Topic: Education
• Subtopic: Education General

Am I autistic, or is autism something I suffer from? Should I come out, to my friends, to my family, to the people I work with? Should I drop the mask? How can I explain my experience to a neurotypical world?

The Subtle Spectrum offers an exploration into the postdiagnostic landscape of autism and the transformative journey of one woman, from her awareness of difference, through acceptance, to an embracing of autistic identity and beyond as she questions the cultural identity of autism.

Joanna's narrative is enriched with insights from a range of diverse contributors, creating a reflective opportunity for people to gain a better understanding of the experience of being autistic. With a focus on relationships built across a neurodiverse divide, the book considers topics as broad as mental health, work opportunities and abuse, weaving theory and research with lived experience to give true insight into the life of an autistic person, both pre- and post- diagnosis.

Written with a raw and engaging honesty, this is a crucial read for anybody who identifies as autistic as an adult or teenager, or anyone looking to support somebody exploring diagnosis. It will also provide an invaluable insight for social workers, educators and relationships counsellors working with autistic people.

1Introduction

When writers create books, they have their readers in mind.

Who could these people be?

A good book will be written for well-imagined readers, a bad book will talk only to the writer, leaving the reader to peer in from the outside. I have worried about which this book will turn out to be.

As I wrote this book, I imagined you.

I imagined you as an adult recently identified as autistic. I thought about the shockwaves about to ripple through your life, and the new perspectives and understandings, disappointments and reassurances that these shockwaves could bring.

I imagined you as someone who supports an autistic person or autistic people. I thought of your dedication to that person or people as you endeavour to peer inside parts of the spectrum not previously articulated.

I imagined you as the teenager I once was, but with one key difference: you know you are autistic. I thought of how this knowledge of self might alter your pathway to adulthood.

Whoever you actually are, I am delighted you have picked up this book with a curious mind and I very much hope you find something useful inside its pages.

Many ‘me’s wrote this book, the me I am today as I go back through the pages with an editorial pen in hand, the me I was six months ago when I began writing, the me I was four years ago when I began researching, the me I was six years ago posting anonymously into the ether of the internet. Our voices overlap each other within its pages.

When I first set out to write this book, I imagined I might be able to neatly order the shockwaves and realisations that I, and others, have experienced after we came to know we were autistic into a neat map. I imagined this map to be similar to the stages of grief outlined for people who have experienced a bereavement, or the steps to recovery detailed for those who are confronting addiction. I imagined I understood them as I had been observing them ripple through my own life for a number of years, and I have connected with a great multitude of friends online who all report a similar set of ripples pulsing through their lives.

Surrounding me at my desk as I wrote this book have been piles of notes, some on scraps of paper or lumped together in notebooks, great long lists on continuous streams of computer paper. Still more notes have existed in various locations on my computer, in files and online. There are even diagrams and at times the notes and post-it notes have crept up the walls around me. The ripples are apparent in all of them. I can see them. I can name them: relationships re-evaluated; capabilities and incapacities revealed and understood; decisions taken about whether to ‘come out’ or not to friends, family members, at work and so on. And yet…

As I have written I have not managed to pull these common themes together into the coherence I imagined. I have worried that using my own experiences as material could come across as an indulgent act of navel gazing, and that I would, in your eyes, fall on the wrong side of the distinction between good book and bad that I drew at the top of this chapter. I have been forced to conclude that whilst there is certainly common ground, the experience of that common ground is always individual.

I have failed in my attempts to construct the neat guide I set out to present to you. But I hope that what you have in your hands is all the more human for its imperfectness. In being so I trust it will be easier to relate to than the voice of a know-it-all who had managed to map out this territory.

2Mapping experiences of being a diagnosed autistic: more of a doodle than an Ordnance Survey Map

I set out to map the landscape I encountered as someone diagnosed as autistic in adulthood. What I present to you is more a pen and ink doodle on the back of a napkin than a 1:50,000 OS map. Nevertheless, and in no particular order here are some outlines of what I believe to be common ground.

2.1 Relief

You may have persistently tried and failed to do certain things through the years, things other people seem able to do with ease. You feel relief upon discovering a reason, beyond a lack of effort, for your inability to master these tasks. Akin to the relief felt by a person constantly told off for not listening properly upon discovering they have a hearing impairment.

This may in time be tempered by a growing awareness that certain talents you have prided yourself upon also fall into this new category of ‘autistic traits’.

2.2 Questioning how to phrase your identification

Working out how to tell people you are autistic is like trying on items of clothing to see which suit you. Will you say: “I am autistic”, or “I have Asperger’s”? Might you say, “I suffer with autism”, or “I have been diagnosed as autistic”? Perhaps you will prefer “I am on the autistic spectrum”, or what about, “I have ASD (autistic spectrum disorder)” or “ASC (autistic spectrum condition)”? You may reach for new terms: “I am neurodivergent” or invent euphemisms: “quirky”, “a little out of sync”, “different”.

In the first instance, it is likely that you will use the phrasing you have heard most often in your life. However, in time you will realise that each of these different phrasings contains within it a set of implications and beliefs about autism. You will come to question the precise meaning of the phrase you first heard and begin hunting for the one that suits you. To go back to the analogy of trying on clothes, you are a child first dressed in clothes by their parents who then begins to dress themselves, and eventually develops a style of their own.

2.3 Deciding who to tell

Once you have worked out how to say you are autistic, or more likely whilst you are still working out a phrasing that suits, you will begin to consider who to tell.

Will you keep it entirely to yourself? Will you tell your family, your friends? Will you tell the people you work for? Would you put ‘autistic’ on a job application? What about people you meet in passing? New acquaintances, strangers on trains, the person sat next to you on the bus or in the waiting room, the taxi driver? What about professionals you come into contact with: your solicitor, your doctor, your hairdresser, the person who serves you at the supermarket?

Will you tell the world at large? And if so, how will you do it: by wearing a symbol that those in the know could identify? By spelling it out in bold type across a statement t-shirt? Will you write about it anonymously online, or publicly so that anyone who took the time to search the net could learn this fact about you?

Your experience of disclosing this information about yourself, to the first few people that you tell, is likely to shape your attitude towards telling people in the future. Your choices about who to tell will constantly update themselves in light of other people’s reactions to you.

People you have told might start to tell other people. How will you feel about other people giving out this information on your behalf? Of course, not everyone will want to disclose that they are autistic as so clearly articulated by Noleta below.

1

Noleta, 15 years old: my diagnosis is my dark secret*

I received my diagnosis at the age of four, but I never knew about it until I was ten years old. When I found out, I froze to the spot. Although I kept an expression of strained joy on my face, my mind was racing with thoughts. At my small village school, people with special needs or learning difficulties were rare. The few there that did need extra help were completely overlooked by their peers. People often used those students’ names almost as an insult for being stupid, dumb or acting in a way that the rest simply didn’t.

To be identified as different was the worst thing that could happen. As I nodded my head along to my parents’ words, fear grew inside me; anticipating what my life would be like should anyone discover my dark secret. To this day at the age of 15, I have only let my diagnosis slip to one person (thankfully they are a close friend of mine). I am utterly terrified at the thought of what might happen, should anyone find out.

Surely, you’re asking, surely, I’ve grown to accept my diagnosis and learned to love myself? Throughout these past five years, my views on ASD have never changed – perhaps you could say they have become worse, darker. No matter how many people tell me that I’m perfect as I am or that ASD doesn’t define me, I doubt my opinion will ever be altered. My fear is being seen as incapable and that society will judge me based on that.

The term Autistic is used as an insult, to mock people, why would I want to identify with that when the word carries so much negativity? You can’t change the opinions of others, and acceptance just isn’t out there. I want to avoid the label because I desire a full life, with marriage and a good job and all of the things that other people have, without having to prove that I am not less than everyone else. I want people to know me, not a diagnosis.

* The people icon indicates that the box is someone’s personal testimony/perspective/insight.

2.4 Thinking about everything over and over again

You may end up thinking everything twice as you ask yourself, “Do I think that, or is autism making me think that?” “Is that me, or is that an autistic trait?” or “What would I think about this if I were not autistic?”

For some people this will be a case of meta-metacognition as you will already have been aware that other people think differently to you and have been wondering, “What would someone else who was not me think about this?” Adding in an identification of autism imposes another layer on this thought and you end up thinking, “What would someone else think, and what would I think if I was not autistic?”

Thinking everything multiple times over can be very tiring. People around you who become aware of your autism may start to do it too, questioning whether your opinions, likes, dislikes, needs and interests are indeed yours at all or whether they belong instead to autism.

The more you ask these questions, the more you will struggle to distinguish yourself from autism. You may feel as though your sense of self is fading as your understanding of autism sharpens. Are you You? Or is the You that you thought you were simply autism?

2.5 Have you been being You or have you been being your best impression of Normal?

A realisation that so much of what you have learned to say and do over the years has been said and done in order to appear neurotypical can lead you to contemplate who you are behind your mask of normality. Many autistics I spoke to in the writing of this book described the process of trying to find themselves, and understand who they really are, as being similar to having a second adolescence. To attempt this process during adolescence itself is undoubtably to brace oneself against the mightiest of teenage experiences.

2.6 Paradigms, prejudices and neuro-normative narratives

As you begin to see yourself as autistic, or see autism as something that relates to your life, you are likely to become increasingly aware of the paradigms, prejudices and neuro-normative narratives in society that make life slightly harder for you. Some people find these as debilitating as living on the top floor of a block of flat...

Table of contents

• Cover
• Half Title
• Endorsements
• Title Page
• Copyright Page
• Dedication
• Contents
• List of boxes
• Preface
• Identity-first language
• Trigger warnings
• 1 Introduction
• 2 Mapping experiences of being a diagnosed autistic: more of a doodle than an Ordnance Survey Map
• 3 Travelling from autism awareness to autistic identity
• 4 Fragments of difference
• 5 Reflections on difference
• 6 Fragments of awareness
• 7 Moving between difference and awareness
• 8 Diagnosis
• 9 The report
• 10 Blog part one: : the first weeks after diagnosis
• 11 Reflecting on the impact of diagnosis on my identity
• 12 Blog part two: : the first months after diagnosis
• 13 Reflection
• 14 Blog part three: half a year after diagnosis
• 15 Reflection: history repeating
• 16 Love across a neurodiverse divide (explanations of a photoblog)
• 17 Reflection: interoception
• 18 Emotional connection
• 19 Pregnancy (explanations of a photoblog)
• 20 Special interests
• 21 Reflection: recognising the impossibility of change was crucial
• 22 To be identified is our pride
• Bibliography
• Notes
• Index