My journey through autism – Invisible Disabilities Week 2020

Posted by: danielcarmichael - Posted on:

As part of Invisible Disabilities Week, Janice Southworth from our Prescription Services team writes about the struggles she’s faced as an autistic woman and the tremendous relief a long overdue diagnosis finally gave her.

Portrait photo of Janice Southworth,

I’m Janice and I’m a member of the NHS Business Services Authority’s (NHSBSA) newly created Disability and Neurodiverse  Network – a lived experience group which aims to give a voice to colleagues who have a disability, neurodiverse condition, or a long-term health condition. In this blog, I’d like to share some of my experiences to help promote Invisible Disabilities Week (18-24 October 2020) with the hope of raising awareness and starting conversations.

To most people, I probably come across as ‘Miss UK Average’ and go largely unnoticed. This isn’t always such a bad thing: for most of my life, I have struggled with the awareness of being ‘different’ from everyone else. Apart from a brief time in my late teens when people cottoned on to me having the coolest record and T-shirt collection in college, I have always been on the outside of the window, looking in. Not sure if I will ever be invited in as a fully-fledged member of society. Several times giving up. I am a survivor of suicide.

Last year, I found out that I am autistic – one of what they call ‘The Lost Generation’ of middle-aged adults who grew up thinking they were supposed to be the same as everyone else (neurotypical) because people my age and gender were rarely diagnosed in the 1980s and 90s unless there was an obvious intellectual impairment. On the contrary, I was a child prodigy.

For years, I felt I had a lot in common with people with autism, but stopped short of thinking I was one of them because I don’t immediately present some of the traits or stereotypes people associate with autism.

I had mental health struggles from an early age and sought help for them in my adult life from numerous doctors, psychiatrists, psychologists, and counsellors. I had broad diagnoses of anxiety, depression, PTSD, OCD, and body dysmorphia. I had phobias, chronic fatigue, unexplained and very frightening severe muscle spasms, and my brain seemed to turn to mush after university. Some of the medications I took are commonly used to alleviate symptoms of autism, but nobody told me I was autistic.

When I went to a new GP last year and told her I thought I might be autistic., but she was sceptical after ascertaining that I could look her in the eye and recognise facial expressions. For various reasons, I did not qualify for assessment from my local health authority so I had to go for a private consultation.

It might surprise a lot of people, but I found the diagnosis a tremendous and life-affirming relief! I don’t feel nearly as disabled as I used to. I feel empowered by explanation and awareness, and feel proud of what I have achieved so far in my life. What I thought was a kind of upside-down world seems to have turned itself the right way round.

Around the same time that I was discovering my autistic identity, I had also started reducing my dependency on prescription medication – partly because it didn’t seem to be improving my life and partly because of the prescribed medication shortages that were affecting supplies. I was terrified at first, worrying that my most severe symptoms would overwhelm me again, but it turns out that I can function really well on a greatly reduced dose. And the extended ‘brain fog’ – partly autistic burnout, partly chemically induced – which I worried was permanent has also lifted.

Yes, I have sensory issues or sensory overload, a complicated empathy overload and absence, scientific rules, repetitive habits and interests,  quite a few so-called comorbidities such as ADHD, dyspraxia, and Tourette’s syndrome, but I have overcome them and use my differences as a force for good. I am more than what these issues make me!

I am a postgraduate, writer, researcher, carer, friend, lover, advocate, campaigner, walking encyclopaedia, daydreamer, and butterfly swimmer. I also work full-time for the NHSBSA in prescription pricing and I have the strength and tools to do almost anything else!

You can learn more about autism on the NHS website. Including the signs of autism, how to get diagnosed, and where to get support.

1 reply on “My journey through autism – Invisible Disabilities Week 2020”

  • Janice thanks for sharing your incredible but probably all too familiar story.

    My daughter who is currently 14 cannot get a diagnosis as she doesn’t present strongly enough when being observed. As you probably know all too well, girls are very good at masking the traits (stimming, hand flapping etc). This is starting to take its toll on the whole family as we deal with a new emotional crisis every few months almost certainly stemming from her ADS.

    I dont really understand what a diagnosis will really mean for her at this age, or for us either but I’d love for our Daughter to grow up understanding her particular quirks and why she is so beautifully unique. Thanķ you

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