A late diagnosis of Asperger’s – Laurie’s Story

Autism is a neurological condition affecting a person’s ability to relate to wider society. People with Asperger syndrome are of average or above average intelligence. They do not usually have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They have fewer problems with speech but may still have difficulties with understanding and processing language.

I met Laurie on the platform of  a train station when she asked me to take a picture of her in front of the station sign. She was on her way to give a talk on Autism in London. It struck me how warm and instantly captivating this woman was. I felt like I already knew her well and asked her to do a guest blog.

I relate to receiving a late diagnosis and the surprise at feeling like the literature on my condition was almost written about me, realizing why things felt odd for me at points in my life and I didn’t always seem like others. There is also thought to be a link between my condition, hypermobile Ehlers Danlos Syndrome (hEDS) and Autism. The science remains tenuous on the link but that’s the case with a lot of the co-morbid Ehlers Danlos conditions.

Despite having only just met, Laurie helped me onto the train and when I was let down by the Passenger Assist service who were supposed to help me get off the train (this is normal), she not only found a member of staff to grab a ramp, but kindly pushed me across the station to the taxi rank when she could see I wasn’t able to easily push myself without injury.

Here’s Laurie’s story…

I love traveling by train and always get to meet interesting people and have this habit, which in retrospect, is an hilarious epitome of a middle aged bat in a silly hat who excitedly thinks they are going to meet someone by chance who will change their life. I’m never, ever, wrong because I know every person adds another brushstroke to the portrait which is me. It is pretty easy to imagine my wake when a bunch of random strangers share those “so how did you know Laurie?” questions. The answers will range from “First Class lounge” to “on the train” and “waiting on the platform”. To be honest, I haven’t been there and done that enough times to open a T-shirt factory yet but seem to do a fairly good take on the in-yer-face traveler. At some point, I may tell you the story of how I got to buy a vacuum cleaner in Brisbane and, yes, I do have the T-shirt.

You asked me to do a guest post for your blog on the impact of a late diagnosis of autism; that’s how I heard it, anyway. Interestingly, it was very much connected with the reason I asked you to take the photographs at the train station. I was making a photo journal of “what autism means to me” for a doctoral researcher with an autism specialism and was tracking the day from home to London and back. As you may remember, I was speaking at a conference. Arianne, we would probably never have met if I had not been diagnosed with Asperger’s syndrome. That kind of understanding blows me away.

I was diagnosed with Asperger’s syndrome in January 2006, at the age of 44. Thankfully, I only had to wait six months but they were very painful and troubling months. Haunted by memories from childhood, I could hear snapped accusations from my mother and her mum: why do you always have to be different? Why can’t you be the same as everyone else? Why can’t you be more like your sister? Why do you always need to have something wrong with you? Why can’t you be more like a little girl instead of a little boy? What was wrong with me that nobody seemed to like me? Those months of waiting were dreadful. Maybe I did have a need for something to be wrong with me. Maybe it was Münchhausen syndrome, where suffers self harm to gain attention. I argued with myself. No, I hadn’t begun the research into autism and, specifically, Asperger’s syndrome to look for anything to be wrong with me. I was trying to discover if the diagnostic criteria fitted my youngest son, who had been at a special school for 7 years and had to move as they only catered for children up to year nine. He had been assessed a year or so earlier by an educational psychologist and I was told he couldn’t be autistic “because he can talk”. I was looking for evidence of other speaking autistics and found plenty. I also recognized all the autistic traits in me.

Up until that time, in the latter part of 2005, all I knew about autism was it was something to do with little boys who couldn’t talk but they sat rocking in corners and occasionally threw tantrums. How wrong was I? I had no idea girls could be autistic yet the first three books I ordered were by women; autistic women. Two had doctorates and the other was a professor and the titles of their books captured secret thoughts I’d had from my earliest years: Thinking in Pictures, by Temple Grandin; Pretending to be Normal by Liane Holliday-Willey and Life Behind Glass by Wendy, now Wenn, Lawson. It was as though these authors had been following me around with a notebook; the similarities between us were startling. I knew, should the diagnosis fit, then my family would all come along with me and they did. Diagnosis obtained, I was able to go back to school and tell them about it and inform them autism ran in families so would they please take me seriously? Eight months later, my youngest son, the one whose earlier years had been a living nightmare, was diagnosed. His behavior had been so extreme, I had tried to give him away. In a phone call, my eldest son, then 23, asked if I thought he also had Asperger’s syndrome. Yes, I certainly did. He was diagnosed at 25.

A new life began. It was a relief to find out there was nothing wrong with me, as I had always been led to believe. There were lots of layers to peel back because I had tried so hard to be the kind of person I thought others wanted it was difficult to know who I was. Part of that growth was to work with autism researchers. Having taken my youngest son from one expert to another for over 7 years, I became passionate about educating the professionals of the future so other parents would not have the kind of issues I and my son had faced. I had heard so many of them rhetorically say It’s not easy bringing up a child on your own, is it? Single parent syndrome could almost have been a diagnosable condition. There are people I have known for 10 years now, who were post graduates working towards their doctorates. Two of them have become parents. Working with them has been life affirming and has helped my confidence and self worth to grow.

Visiting different universities inspired me to apply and I completed a degree in journalism in 2010. By then, I had decided to become a professional speaker and have self funded further training. My first conference, in 2012, came through one of the doctoral students I had worked with at City University in London. It was the singularly most amazing experience of my life. After the event, a woman introduced herself to me and asked me to speak at one of her events. I now count her as a friend and she has booked me not once but four times now and it was one of her events I was heading for when I met you on the platform. There were delegates in attendance who were there just to hear me speak and this, I find, is very moving.

Quite honestly, being diagnosed 11 years ago has changed my life; questions that had followed me for over 40 years were answered and I have been able to help others, too but it’s all still a work in progress. This is the year to power up my professional speaking career. The time when I step out of mainstream employment is becoming closer, partly because there are daily issues and stresses at work which are damaging my mental health. Dr Zeuss, of Cat in the Hat fame said this: “why fit in when you were born to stand out?” I used this quote on a slide created for a talk at the Manchester Autism Show this year and I really do believe it.

LAURIE 2.jpg

Laurie Morgen is a professional speaker and trainer who was diagnosed with Asperger’s syndrome at the age of 44. She has taken part in a television documentary (Living With Autism, BBC Horizon, 2014) and has acted as a consultant to a filmmaker seeking to present an accurate depiction of autism in fiction. Laurie has three adult children, all of whom are on the autism spectrum. She lives in The East Midlands.

 

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