Personal Stories, Autism, Diagnosis

Finding Out I am #ActuallyAutistic

My name is Rosemarie, I am 44 years old and recently I was diagnosed as #ActuallyAutistic.

From that moment, the masks that I wore all my life came down. Everything made sense, fell into place, and after years of wondering who I was and what I stood for, I finally knew.

But how did this happen? How did I find out I was #ActuallyAutistic? I have only found this out in the last two weeks or so, and it has already turned my life upside down, but in a good way, not a bad way.

A Routine Doctors Check Up

At the end of May 2018 I got a very nasty red, painful and nasty bite on my left forearm. I walk my dog regularly on the path that runs alongside the River Severn where I live, so I was not entirely surprised to be bitten, but I’d never had a reaction quite so bad before, so it warranted a trip to my GP. I was prescribed antibiotics in case of infection and was given a blood test to check for any infection (I am guessing to look for possible Lyme Disease) and asked to make an appointment for a check up in ten days and to get the results of the blood test.

When I returned to my GP the blood test I had did show infection, so the doctor I saw said she wanted me to have another one in a few days’ time to make sure the antibiotics had done their job. While I was with my GP, I enquired about my referral to the mental health team for support and talking therapy. This was nothing to do with autism or my subsequent diagnosis; since November 2013 I had been through a long string of close family bereavements.

They started with my much loved and much wanted son Francesco “Frankie” Enrico Ventura, who was born sleeping when I was 33 weeks pregnant. After I lost him another 5 close relatives passed away one after another after another, which meant I couldn’t even process or make sense of losing my son, let alone the others, as I had to be strong every time another close relative passed away. It was relentless.

The doctor tapped at her keyboard and looked at her screen. “I can see the referral,” she said. “However, mental health is stretched to the limit, and I imagine you are still on the waiting list.”

I had been on the “waiting list” to access support from my local mental health team for nearly 3 years.

“Oh hold on, before you go,” my GP continued. “Something has flashed up. There is a study being done into women in your age bracket who have undiagnosed autism. They are looking for women aged between 40 and 45 to fill out an autism screening questionnaire. Could I trouble you to fill one out? It will remain completely confidential.”

I didn’t really think to ask but my guess was that they were looking to pick up any women in their early 40’s who had undiagnosed autism, so I agreed to complete it. I also recalled a programme on Channel 4 about undiagnosed autism in the UK, so maybe this study was to do with that.

My GP printed it and gave it to me with a pen, and asked me to go to the waiting room, fill it in and then hand it to the receptionist. It took me almost half an hour to do and it consisted of 50 questions with “agree”, “slightly agree”, “disagree” etc. I handed it in, went back to my day and thought that was the end of that.

The Telephone Call

The same day, I stopped working at 5.00pm (I work from home remotely), shut everything down and started cooking dinner. I turned the TV on in my kitchen and “Pointless” had just started on BBC-1. I was chopping mushrooms and onions to make spaghetti and meatballs, and then my landline phone rang.

I thought it might have been my Mum as my Dad is currently in very ill health, but it wasn’t.

“Is that Mrs Simmons? This is Dr Sullivan, you saw me earlier today.”

“Yes, of course,” I replied.

“I wanted to talk to you about the autism questionnaire you filled out. You scored 46 out of 50 which is a very high score. I got Dr Lambert to double check it, as she is our mental health specialist GP here, and she agrees with me that the high score shows us that there is a high possibility that you are on the autistic spectrum. With your permission, I would like to arrange for you to see a psychologist who specialises in autism as soon as possible. She is also leading the study you filled out the questionnaire for. We have spoken to her and she is going to come up to the surgery to see you when you have your next blood test.”

My mind was reeling but I agreed to see her.

My Autistic Family History

In the few days that followed before I returned to my doctor’s surgery, I read up on as much as I could about autism. Even though everything I read made perfect sen
se to me, I refused to think that I was autistic, and I reasoned that only a qualified professional could tell me that I was. But in my heart of hearts, I knew it already.

I also couldn’t believe that I didn’t make the connection before, as it runs in my family. My second cousin is severely autistic, has learning difficulties and has the mental age of a 4 or 5-year-old – he is almost 23 and still living at home. His mother, my first cousin, was diagnosed with dyslexia and dyspraxia.  And if my son Frankie had lived, he would also have been autistic.

Tests that were done on him after he was born revealed that he had two identical copies of chromosome 15 which meant he would have been severely mentally disabled. He also had physical disabilities too, as at my 5 month scan he was diagnosed with a severe cleft lip and palate, and at another scan 3 weeks later I was told he had non-positional talipes of his right foot, which meant it was very unlikely that he would have walked.

When the news about my son’s Chromosome 15 duplication was delivered to me I was told that those who have problems with Chromosome 15, whether duplications or bits of the chromosome missing, always have autism.

The Diagnosis

I returned to my doctor’s surgery, had my blood test and then I saw the psychologist straight away. She asked me lots of questions about my childhood, how I related to other children when I was little, what it was like growing up, how I liked to work, how I relate to people now – all sorts of things. Much of it was a total blur.

I told her that I had developed many forms of coping mechanisms over the years and covered up a lot of things and tried to disguise them, so I would “fit in” and be like everyone else. In a way, I had been lying to myself all my life about who I was and the traits I had. I had created a series of masks to help me “fit in” and be “normal”.

I had to fill out some more forms, and she got me to draw some diagrams. She also asked me about my family history, so I told her about my son and my cousins.

After she reviewed everything, she delivered the news.

“I do believe that you are on the autistic spectrum,” she said.

I wasn’t at all surprised. From the moment she said those words, I knew who I was. I knew what I was. I couldn’t believe how much of a relief it was to me to hear those words. All my life I had felt abnormal, that I didn’t fit in no matter how hard I tried to. The truth was that my brain was just wired a bit differently to most other people. This different wiring was what made me….me.

She explained that on a scale of 1 to 10 with 1 being the mildest of the mild autism and 10 being the most severe ever, she would put me on the scale at around 4 or 5. She said there used to be a term years ago called “high functioning autism”, and although they don’t use it anymore and these days you are either on the autistic spectrum or you are not, “high functioning autism” is when you can hold down a job, live a relatively normal life but still have strong autistic traits.  She said she would write to me with a further appointment with her for a more in-depth discussion as soon as possible, and to talk about what if any support I would need in the light of this diagnosis.

Although I have led a “normal” life, although I have held down jobs, maintained a home, maintained relationships and look relatively “normal” on the outside, that couldn’t be further from the truth. The masks I developed to hide the way I was became second nature to me, and I was a very skilled craftsperson at creating those masks, keeping them on and “pretending” that I was normal.

Accepting That I Am #ActuallyAutistic

To accept my diagnosis of autism in the present, I knew I had to look back to my past.

I began to look back over my childhood, 20’s, 30’s and early 40’s and listed all the things I did an all the traits I had over those decades. When I saw them written down on paper they made such sense to me, for example, I finally realised why I struggle so much in office environments and why I much prefer working remotely from home. I realised that my inability to make eye contact with people is down to my being autistic (I will let you into the secret way I have of making it look like I am making eye contact with people, but I am not because to do so quite literally frightens me inside to death, in one of my future articles).
I realised that the internal meltdowns I have when things don’t go my way or if my routine gets upset are not my fault. I realised that there are things l like to the point of being obsessive – it wasn’t enough to just like heavy metal music, for example. I have an obsessive need know everything about my favourite bands and I can tell you everything there is to know in the minutest detail about the band Status Quo. I have a huge interest and fascination about nuclear war and I can tell you everything from the types of bombs right down to the amounts or “rads” of the dosage of radiation that brings on certain symptoms and death. Not only are my interest’s ones that are, quite frankly, not normal, I am also extremely obsessive about them.

Accepting my diagnosis of autism was relatively easy.  I knew that it was why I was the way I was, and that I had always been that way from birth. I didn’t feel any less of a person because of my diagnosis, in fact, I felt like more of a person. I finally felt like…

I am Neurodiverse – but what does it mean?

Which brings me to a word I had never heard of or come across until I received my diagnosis – neurodiverse – yet this word seemed to me to be everywhere once I started reading up on autism more closely online. This area fascinated me, and I even began to think that being neurodivergent is in fact the new normal, and those with conditions such as autism or ADHD for example have them as a result of a normal, natural variation in the human genome.

Understanding myself and why I am the way I am through my diagnosis led me to realise that I am, in fact, neurodiverse. I am as normal as any other person in this world except that my brain is “wired” in a slightly different way. It doesn’t mean that I am abnormal, or that everyone else is normal and I am not.

The key to understanding and acceptance of my diagnosis was this realisation and embracing neurodiversity to bring about change. I am aware that many out there will “fear” us because they will see us as “different”, like in the X-Men films where those who were “normal” feared the “mutants”.  Human’s are wired to be fearful of that which is different, or that which doesn’t conform to society’s “accepted” standards.

There is along way to go to bring out change and acceptance through neurodiversity. However, I hope even if one person reads this article and subsequent ones I will be writing for Me.Decoded and has a greater understanding and acceptance of those like me who are neurodivergent, I will be happy. There is much to be done to break down barriers, prejudices and perceptions of those with autism and other conditions.

I am excited to have Rosemarie as a regular contributor, and look forward to her next post when she will be sharing more insights from her life.

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