Personal Stories, Autism

Navigating through life

Throughout my 20’s and 30’s I strived to fit in, to be like everyone else, not just in the workplace but with my family, friends and peers. I still had an overwhelming feeling that I wasn’t like everyone else, that I had no place in the world and that I didn’t belong.

Somehow, I managed to navigate through the next two decades by continuing to be a master of disguise and building ever more complex and bigger masks to cover up the way I was. I got married, I kept a house, I held down a full-time job, I had friends. On the surface, I looked completely normal.

But inside, I was anything but normal.

My 20’s

While I was a student I met my first husband when working at Sainsbury’s on the checkouts. We were friends before we got together after I split up with my first boyfriend and we held down a long-distance relationship as he was studying computing at the University of Glamorgan in Wales. He dropped out of University, got a job and my parents helped us buy our first house. Looking back I think we got married way too young, we should have finished our studies and seen more of the world before settling down.

At the same time I got a job as the PA to the manager of Chris Tarrant, the TV personality. The company I worked for represented the interests of TV and Radio personalities such as John Kettley, Ed Doolan, Les Ross and Richard Allinson. As I had a huge interest in advertising, media and journalism this job was perfect for me. I got to work closely with Chris and see the world of the media from the outside looking in, so to speak.

For seven years I was devoted to Chris and my job, and nothing else. My husband was very successful in computing and had several well-paid jobs. It was exhausting to keep the masks on and not let them slip, especially at work, but I got my head down and did my job to the very best of my ability.

I got to see “Who Wants To Be A Millionaire” go from a format on A4 paper called “Cash Mountain” to being a massive global success, and Chris became an even bigger success with it. He was already known for being one of the presenters on ITV’s “Tiswas”, “Tarrant on TV” and as the breakfast DJ on London’s Capital Radio, but “Millionaire” catapulted him to international stardom, and I was a big part of it. It was a crazy time in my life.

After seven years I had gone as far as I could with Chris and with TV and Radio personalities, and my husband was keen that we start trying for a baby.  I got a job at the University of Worcester and I had other jobs after that too in PR and marketing.

My 30’s

I wasn’t too keen on being a mother, but I was getting pressure from my parents and husband to start a family, so we went down that road. By the time I was 37 I had had 4 early miscarriages with very long gaps in between them.

We were referred for tests and nothing was found with me to explain the miscarriages, but we were given the chance to have 2 rounds of ICSI treatment on the NHS. I then went on to have another miscarriage as I got pregnant again naturally.

My ex-husband and I had many ups and downs, looking back I know now that it was due to my being autistic. So much makes sense about how I saw the world and my behaviour, especially when it came to him, and I wish I had known I was autistic much sooner than I did.  

My ex-husband became an ethical hacker and invented a software tool that had huge success, and he founded a company to sell the tool. We recruited my best friend from school into the business to help us sell the product, as neither of us had any sales experience, but I knew she could sell ice to eskimos!

I was keen to pay her a decent salary but my ex-husband, being extremely cautious as we were a start-up business, wanted to pay her a smaller salary but much larger commission. After much negotiation she joined our company and did very well at selling the product. I could see the potential that the tool had and how we had to “speculate to accumulate”, and that even if we had to pay out more for salaries to find the right people to sell it, it would pay dividends.

I had a gut feeling about my friend from school and the “relationship” she had with my ex-husband. I couldn’t put my finger on it, but I sensed that there was some “chemistry” between them. This was confirmed when my ex-husband decided he wanted to end our marriage after 16 years, 10 days before we were due to start our first round of ICSI treatment. A few weeks prior to this, I suffered a sixth early miscarriage.

It wasn’t the first time my ex-husband and I had had problems, and deep down we weren’t right for each other, but now I know why things didn’t work out. My off the charts behaviour due to my autism was a big contributing factor, and so much makes sense to me now. Ironically, he is now married to my ex-best friend from school.

By chance a month after my ex-husband left our marriage an old friend got in touch with me on Facebook who used to work with my ex-husband when they had jobs at the same company in Birmingham in the early 2000’s. I hadn’t heard from him for years and he came to see me, and we ended up getting together. We got married on 6 April 2013, and the following month I was stunned to discover I was pregnant for a seventh time.

The Road to Motherhood

I had so many anxieties and worries when I found out I was pregnant, and every week was a huge milestone to cross. I became obsessive and read up on every little thing I could find on motherhood, and I had meltdowns when I thought I had done the wrong thing or done something that might affect my baby. I now know that this was due to my being autistic.

I remember being in Pizza Hut in Chichester on the way to Worthing with my husband and completely freaking out when I ordered a goat’s cheese pizza. I was worried that if I ate goats cheese it would harm the baby, and I was inconsolable.

I had to put on even bigger masks to cover up how scared I was about being a mother. But I got to 6 weeks, then 7, 8, 9, 10, 11 weeks, and then magically I got to have a 12-week scan.

There was my baby on the screen. I had no idea if it was a boy or a girl, but I already loved him or her more than life itself.

I was finally going to be a mother.

At my 5-month scan, when we found out I was having a boy, my husband and I were bluntly told by the sonographer that he “could see an abnormality”.

I froze. What did he mean, an abnormality?

He said, “It is a cleft, and a very severe cleft at that.”

He left the room to fetch an obstetrician and my whole world collapsed right in front of me. I thought that I must have done something wrong, and that it was my fault that my son had this thing, that he would need lifelong care and operations. Maybe it was the goats cheese pizza I ate in Pizza Hut, I thought.

To someone who is autistic, communication is key and having things delivered in the right way can make a huge difference. The way I was so bluntly told that my son had a cleft lip and palate will live with me forever. I couldn’t process it, I couldn’t understand it, I thought that there must have been a mistake. It couldn’t possibly be my son who was diagnosed with something so severe.

I was referred to the Queen Elizabeth Hospital in Birmingham for further scans and tests. More problems and abnormalities with my son were found, and I was urged to have an amniocentesis test.

What happened in the next few weeks changed me and changed my life forever, and I was ever grateful that I had my trusty masks to put on like sticking plasters.

In my next article for MeDecoded, I will share how my journey to motherhood changed me irrevocably, and how I tried to cope and navigate through life in my early 40’s, and how the masks finally dropped off once and for all when I was diagnosed as #ActuallyAutistic.

If you are Neurodivergent (autistic, dyslexic, dyspraxic, bipolar, Tourettes, OCD, ADHD, ADD, or other) and are interested in becoming a contributor to Me.Decoded then please get in touch.

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About Rosemarie Simmons

Rosemarie Simmons was diagnosed as autistic in 2018 at the age of 44. Neurodivergent & proud, she uses her experiences to raise awareness of autism & living in a world that is set up for neurotypicals