Constructed to a Different Pattern

By Julie Stevens

When Julie Stevens was first diagnosed with autism, she wanted to read and understand as much as possible – particularly around the emotional impact of diagnosis. However, there didn’t seem to be much out there for people like Julie, diagnosed later in life and already with an established life and career. Julie didn’t know whether what she was feeling and experiencing was usual, or whether she was an outlier.
Struggling to accept her diagnosis and its implications, Julie started writing. This book is the result: an open and honest account of the first year after an autism diagnosis.
This book takes you on a whistlestop tour of how Julie coped with some of the limitations the diagnosis placed upon her and came to her own conclusions about what it means to live life on the autism spectrum, with all the joys and challenges that can bring. But most of all, it’s a book about coming to terms with a label that can change your life, even if that’s not what you were expecting at the outset.

• Language: English
• Publisher: Lulu.com
• Release date: Nov 16, 2016
• ISBN: 9781326866198

Book preview

Constructed to a Different Pattern

Constructed to a Different Pattern

My first year of life after an autism diagnosis

Julie Stevens

© 2016 Julie Stevens

ISBN 978-1-326-86619-8

Foreword

On 30 July 2015, I was diagnosed with an autism spectrum disorder – what would previously have been called Aspergers Syndrome. This book is about the year that followed, how I coped – or didn’t cope – with the changes, and finally grew to accept the diagnosis.

I started writing a blog when I was going through one of the first difficult periods post-diagnosis. I’d just had a workplace assessment, which didn’t go particularly well, and I was really struggling to accept my diagnosis. I genuinely thought, at the time, that someone was going to turn around to me and say there’s been a mistake. I didn’t know – and still don’t – whether that would be a good or bad thing. As time has gone on, and particularly since I’ve met more people who share this condition, it’s clear that that isn’t going to happen. And I’ve just about accepted that.

Even a year on, although I’ve accepted the diagnosis, I still struggle sometimes to accept its implications. I still struggle with the changes that a single word has led to. And I still don’t know whether I have the internal resources to cope with changes that are still to come.

However, the original purpose of the blog has been fulfilled: I started it as an online diary to try to come to terms with the diagnosis and what it means for me in practical terms. That’s now happened, and the blog itself is now starting to change its focus somewhat. But when I was first diagnosed, and looking for answers, I found it very difficult to find something that related to me as an individual.

I didn’t feel – and still don’t feel – as though diagnosis has given me access to a whole new community of like-minded individuals. I, wrongly, thought that it would just be a label and wouldn’t actually change anything. And I didn’t know whether the thoughts I was having, and what I was going through, were normal experiences or unique to me.

So I thought I would turn some of the entries in my blog into a book, in the hope that there are people who are still to be diagnosed – or have been recently diagnosed – that would find it useful when they’re trying to make sense of their own experiences. Because getting a diagnosis, a label, is hard to come to terms with. It makes you question everything you thought you knew. But it is possible to come out the other side with a better understanding of yourself and your needs as an individual.

To be as helpful as possible, I wanted to be as open as I could be. Even so, some of the extracts from my blog have needed minor edits for both my and others’ privacy (I am also publishing this under a pseudonym). Nonetheless, everything in this book is a true reflection of the mental and emotional journey I went through in the first year since diagnosis.

A Cinderella story

Once upon a time, in the middle of the forest, there lived a young woman called Cinderella. Her mother had died when she was very young, so she lived with her father. As her father was often away on business, and few people came through the forest, Cinderella was able to organise her life exactly as she wanted it. No-one came to disturb her routines, or to confuse her with jokes, or to make her feel anything but safe in her forest hideaway.

But Cinderella’s father couldn’t live like that forever. He was getting older, and the business trips were becoming more of a chore. Not having other children, he didn’t know how different Cinderella was, and looked to the time when she would leave home. So he took a wife; a pleasant widow with two daughters of about Cinderella’s age. And they all moved to the house in the forest.

Unfortunately, Cinderella’s father hadn’t prepared her for the change. So when her stepmother and step-sisters turned up at the house, Cinderella had a meltdown. Her new family were very concerned and, despite her father’s assurances that this was normal for Cinderella and that she would come round to them in time, became afraid to say anything to her. And so Cinderella’s unhappiness spiralled. She retreated into the attic furthest from the new family and only emerged to do the chores that had become part of her daily routine. The stepmother suggested that they should get a maid, so Cinderella didn’t have to do all the work, but this made Cinderella so upset – as she thought she was being replaced – that the idea was dropped and never mentioned again.

Months passed, and Cinderella started to get more used to her stepmother and step-sisters (who we shall call May and June, just for the purposes of this story). She would sometimes emerge from her room when there were no chores to do. And the family were all very kind to her, but she couldn’t help feeling that she didn’t truly belong. Although she wanted to be close to people, to fit in, she didn’t know what to say to any of them, and May and June – with their interest in boys! and loud music! – seemed like a completely different species to Cinderella.

Then one day, shortly before Cinderella’s father was due to retire, disaster struck. He was travelling home from his final business when, in the middle of a thunderstorm, he was hit by a tree branch and died instantly. Realising that Cinderella needed to be told gently, and despite her own grief, her stepmother broke the news in stages. Once Cinderella knew, the stepmother then told May and June. Seeing the family clinging together, Cinderella wondered why no-one had tried to touch her, to comfort and console. The truth was, they assumed she wouldn’t want them to; that she would be scared and overwhelmed. But Cinderella craved the human contact, and the lack of it made her feel sad, isolated and unwanted. So she returned to her attic, and despite her step-family’s best efforts, remained resolutely mute and withdrawn as she no longer had the words to tell them how she felt.

More time passed, and the small family were getting increasingly concerned about Cinderella. Then an invitation came from the Palace of the small realm in which they lived. The Prince was looking for a bride and instructed all unmarried women to attend a ball in his honour. May and June were, naturally, excited about this – although didn’t really want to actually marry the Prince, just to see the palace. The stepmother was concerned about how Cinderella would cope at the ball and tried to excuse her, but was informed in no uncertain terms that Cinderella had to attend.

So the preparations for the ball started. May and June bought fabulous new dresses in the latest style. Cinderella, however, couldn’t even be persuaded to go into the dress shop. And the dresses brought to the house were all wrong: the fine materials were too scratchy, or too silky, or made a strange noise when she moved. So Cinderella insisted that she would wear an old cotton dress, as that was the only dress she felt comfortable in.

Cinderella’s stepmother was in despair. Cinderella couldn’t attend the ball in her old cotton dress; that would be considered treason. But she also couldn’t stay home – the palace had made that clear. Luckily, Cinderella’s godmother was visiting and she had an idea. Let Cinderella wear her cotton dress underneath but make an over-dress in fabric that didn’t make a noise and that didn’t touch Cinderella’s skin. So, skilfully avoiding Cinderella’s sensory problems, the women prepared for the ball.

The ball itself started well. Cinderella had been told what to expect, and had practised strategies for when she became overwhelmed. Her stepmother had also arranged with the Lord Chamberlain for a quiet room to be available for ‘any lady who should become unwell’. So at first Cinderella could cope with the noise and the lights and the crowds. But – just as she started to become overwhelmed and to head for the quiet room – the Prince decided that he wanted to dance with her. Cinderella tried to refuse, but he gently took her hand. The light touch, so different from the firm pressure that calmed her when her father used it, made her flinch from him and she ran, leaving one shoe behind her.

Well, the Prince was furious. How dare a common woman treat him like this?! So he resolved to find the owner of the shoe, to punish her, and set out the very next day.

In the meantime, Cinderella had retreated to her attic again. The ball had been so traumatic for her that she had spent most of the night hiding in a corner and rocking. May and June had tried to talk to her, but she couldn’t speak. When the Prince came to the house in the forest, he found the companion shoe. But the shoe did not fit May or June. The other women didn’t tell him that Cinderella was also there, but he heard her keening and insisted on going to the attic himself.

When the Prince saw Cinderella’s distress, all thoughts of punishment went out of his head, for he was, underneath all the posturing, a kind man. He reassured Cinderella (and, in the process, discovered that they actually had some mutual interests, which surprised them both). Then, he made a proclamation that Cinderella was not to be disturbed in the future and told his Lord Chamberlain to make sure that Cinderella and her family had everything they needed. The Lord Chamberlain ended up visiting so often that he fell in love with the stepmother and they married. May and June also married members of the Court and, in time, had their own families.

And, in the end, Cinderella was left alone in the house in the forest. But she didn’t really mind. Her family visited, and she had her books and her routines. Sometimes even the Prince would visit, and they’d have lengthy conversations about their joint interests. So, if she wasn’t exactly happy, she was at least content, and that’s probably the best anyone can hope for in this life.

Part 1: Thinking in a different way

The lead up to diagnosis

Every story has a beginning. This one begins on 11 March 2015.

It was just an ordinary day at work. I certainly had no indication that this was going to be the start of a process that would, quite literally, change my life.

I started to feel quite tearful on the train home. I mentally put it down to being tired – I’d been working quite long hours on a difficult project, which was almost over. But as soon as I walked in the front door, the tears started. And I didn’t stop crying for about 18 hours – all through the night, and most of the next day. I couldn’t even stop for long enough to call in sick; to this day I am not sure whether my garbled call to work made any sense.

I tried to pull myself together, and returned to work. But I was not the same person as the one who had left on that Wednesday evening. And I never would be again.

It was probably the most terrifying experience I’d ever been through. It felt as though my brain had shut down completely. I tried to rely on the coping strategies that I’d spent a lifetime developing, but nothing seemed to work. And I didn’t know why.

Everything that people did or said provoked a feeling of extreme anxiety. I couldn’t sleep. I couldn’t think. For the first time ever, I was signed off by a doctor as being unfit for work – which also caused increased anxiety, because I felt that I should be fine; nothing specific had happened, so I couldn’t understand how one day I was fully functional and the next day I wasn’t. Not aware of the full implications, and realising that work was important for my own mental health, I forced myself to go back to work too soon.

I’d always been quite anxious about things. So I assumed that this episode was simply an extension of this natural tendency, or that I’d tried to do too much over the last few