Awareness and support for Autism has increased in recent years meaning that more people are likely to be diagnosed earlier in their lives. This in turn can mean earlier and improved access to services, such as speech and language therapy, which can help ease some of the frustrations people with autism experience on a day to day basis.
Laura James describes how her autism diagnosis as an adult finally helped her to make sense of things after years of feeling she was different from others.
In the Daily Telegraph she writes: “I sighed as I read new research from Cambridge University this month, confirming that men are more likely to test higher on the autism spectrum than women; and those who work in Science, engineering, mathematics or technology, higher again.
However true it may be, my worry is that it compounds a stereotype (that those with autism tend to be geeky men doing something unfathomable) and crops out of the picture millions of people like me – women with autism who struggle to balance their current account, are baffled by spreadsheets and who are more interested in fashion than physics.
Until I was diagnosed with high-functioning autism this summer, I had spent my whole life feeling different. Not broken exactly, but somehow ‘other’. Unable to do things that most people find straightforward. Plagued by guilt, fear and a sense of inadequacy.
At school, I was the small girl on the bench in the playground with her head buried in a book, unwilling or unable to be one of the crowd. Though now 46, on many levels this is how I have remained. Interacting with the world as if behind glass.
My diagnosis was a vindication: I am not defective. I am autistic. Along with the shock, came a strange sense of comfort. Finally, I belong somewhere – and that somewhere is on the autism spectrum.
Parents often say they go through a grieving process when they find out their child has autism. In some small way I felt something similar. A sense of loss for the life I might have had, had I been diagnosed earlier.
My husband had always described marriage to me as an ongoing getting-to-know-you exercise, like 20 years on the same first date. Post-diagnosis, he says he truly knows me for the first time.
From early childhood I was marked out as gifted and I was fixated on learning. Yet I left school at 16 with only a cookery O-level – I was ill-equipped to deal with either exams, or the real world.
Lost and directionless, I bounced from one job to the next – my part-time work included time at a call centre, a property developer and a posh dating agency – but I was left feeling exposed and alone by complicated office politics, illogical workplace rules and the sensory overload triggered by fluorescent lighting, ringing phones and the background hum of conversation.
No one understood why I couldn’t cope. Some put it down to my being spoiled or stupid and I didn’t have the words to explain the strange feelings no one else seemed to experience. I had tried normal and had failed.
I went from doctor to doctor. I was very thin (I would forget to eat, or my exacting standards would make shopping and cooking difficult) so medical professionals suspected anorexia. My heart would race on standing up, so I was diagnosed with anxiety. I struggled to breathe while stumbling out my story to yet another man in a white coat, so they concluded hyperventilation syndrome.
I was functioning, earning money, employing people and looking, to all intents and purposes, as if I knew what I was doing and had it all
They gave me small, seemingly innocuous, blue pills. I was just 20, not old enough to know you should ask the name of the little tablet you’re taking three times a day. Lorazepam is a notoriously addictive tranquiliser, and it was my subsequent addiction to them that sent me to rehab for three months at the age of 23.
The experience taught me that life is tough. That I had it better than most. And that those who think of themselves as special and different are in for a nasty fall. So again I tried to blend in.
I had married too young and was divorced by 25, the mother of two girls. I married my second husband two years later and, despite some incredibly rough patches, are still together and parents to two boys.
As an editor at a large publishing company, it was husband No.2 who found me a job on a magazine after I started to write. Later, when I was in my early 30s, now also the mother of two boys, I went freelance and started a PR company. I got to work from home and create my ideal working environment. I took on clients, who seemed to value the passion and focus I can bring to a project. I see patterns in things, I spot trends, I inherently know when something is about to become big or when a story will resonate.
The more I read about women on the spectrum – and the anecdotal links between EDS and autism – the more it seemed to make sense
Beneath the surface, however, I was exhausted by my inability to feel and behave like others. No one saw the me that would spend 14 hours straight, focused on a project, forgetting to dress. The me that felt an overwhelming terror at the idea of travelling on the tube or getting into a lift. The me that didn’t claim child benefit for any one of my four children simply because the idea of filling in a form was too much. The real me.
Sometimes I would meet someone with autism – usually a young boy – and feel a sense of recognition, but I would swiftly brush the thought away. How could I have issues with communication when words are my trade?
It was a bout of ill health, in 2012 that ultimately led to my diagnosis. I had always had digestive problems, but they became much worse and required surgery.
I was told I have Ehlers Danlos Syndrome (EDS), a rare genetic connective tissue disorder, which affects pretty much every part of my body, causing gastroparesis – where the digestive system simply shuts down – knees that dislocate and autonomic issues, including difficulty in regulating temperature and heart rate.
I reacted with typical lack of emotion, but set about learning everything I could about the condition.
While in hospital for tests I became overly upset over a tuna sandwich and my room being uncomfortably hot. A kind nurse talked me down. She saw me, childlike, sobbing and exposed, and recognised a classic autistic meltdown. Very quietly she said: “Don’t worry, love, we see a lot of people with autism.”
It wasn’t, then, the life-changing event I thought it would be, but it was OK. Some were surprised, a few initially disbelieving, but most felt it made sense of things
I brushed it off as nonsense, but the more I read about women on the spectrum – and the anecdotal links between EDS and autism – the more it seemed to make sense.
Too often women with autism face an uphill battle to secure a diagnosis. I was lucky. I told my GP about the nurse’s suspicions and she referred me to a consultant psychiatrist, who completely understood females with autism. After a five-hour assessment, she gave me my diagnosis: Autistic Spectrum Disorder: Adult Asperger’s ICD10 Code F84.5. It was as if I were meeting myself for the first time.
I immediately wanted to tell everyone. My husband had always described marriage to me as an ongoing getting-to-know-you exercise, like 20 years on the same first date. Post-diagnosis, he says he truly knows me for the first time.
But my husband advised caution, to spend some time processing the information before spreading it around. I agreed and we went to France for ten days. By a quiet pool, I took myself back to my childhood. To the years of neither having nor wanting friends. To being a teenager, unsure of the unwritten rules. To adult life as a mother. Everything suddenly made sense and I returned home with a light tan and a determination to ‘come out’.
I stumbled over my words, but slowly I told my family, colleagues, clients and the few friends I do have. Telling my boys was an odd experience that went something like this:
Elder: “Cool. Does that mean we can go and count cards in Vegas?”
Younger: “What’s for supper?”
It wasn’t, then, the life-changing event I thought it would be, but it was OK. Some were surprised, a few initially disbelieving, but most felt it made sense of things. My honesty has brought a new level of closeness to some of my relationships, something I never thought I would feel. As far as I know, no one has judged me and I have a sense of wholeness that feels new and exciting.
Autism can run in families so, of course, I looked to my children. Only one also suffers from EDS and has autistic traits. As yet, he doesn’t want a diagnosis and that’s fine. He is legally an adult, so it has to be his choice.
Meanwhile, The National Autistic Society’s Lorna Wing Centre is working on new ways to adapt the diagnostic process to make it more female friendly, so more girls get the diagnosis and support they need.
I hope this happens quickly. My diagnosis and specialist therapy (which my family calls “autism school”) are the best thing that have ever happened to me.
I have finally been given an instruction manual for life.”
For more information, visit autism.org.uk/lornawingcentre
Written by Rachel Harrison, speech and language therapist, on behalf of Integrated Treatment Services. www.integratedtreatmentservices.co.uk
