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My road to diagnosis

Nicky Clark, a Parent Patron for Ambitious about Autism, talks about her diagnosis and raising two daughters with autism.

Parent Patron Nicky Clark

On 27 October 2015 I was medically diagnosed as having autism.

The road to diagnosis began in December 2014 and the diagnostic service here in Shropshire is very over subscribed. Add into that my presentation, which is without any accompanying learning difficulties, and the process becomes less straightforward.  

There are many myths around the autistic spectrum. “If you’re not Rainman you’re not autistic” is one of them and there is a danger of assumption meaning that self-diagnosis should be the start of discovery not the end. 

The myths and stereotypes limit and dissuade many women from pursuing a diagnosis at all. Since revealing my condition I’ve had many replies, which alarmed me in their predictability and frequency. 

Women have been told that mitigating factors against diagnosis can range from “but you’re in a relationship” to “but you’re fashionably dressed and use make-up”. This prompted me to create the hashtag on Twitter #SheCantBeAutistic where women could vent and challenge these unhelpful notions.

For me, at nearly 50, another counter-point to my diagnosis is that, as I’m not a child, “what is the point of a label”. The point of giving a name to a complex range of symptoms and challenges is that it is of huge value to me. The more a person can do, the more the world expects. Difference is not universally embraced; it is feared and it’s discriminated against.

As a disability rights campaigner I felt it necessary to reveal my diagnosis because my whole philosophy revolves around acceptance of difference.

I’ve been bullied online, I’ve been shamed and I’ve been hounded. Often by those who feel able to declare, from a distance, that I don’t meet their definition of acceptability. 

I don’t mind that now. Being any woman online in these febrile days of human rights and human wrongs is quite challenging. Being a woman with an opinion is quite frightening for some people. Being a woman online, over 40 and in possession of a small platform, is the perfect storm for those who spend their time doing nothing more than criticising.

I loathe bullying. It makes me cry, it always has and I hope it always will because that way I’ll keep fighting against it. I know I’m not easy to be around when I believe something is wrong and I’m not great at standing back and saying nothing. That’s where I’m so proud of my autism. My detail obsession and fierce fixation on fairness, means I have all the energy available to fight for equality. Hate crime is increasing and I’m so much better at standing up for others than I am for myself.

Creativity is another passion believed by some not to be conversant with autism. My older daughter Lizzy was the first person with autism in the UK to play a character with the same condition in “Dustbin Baby” for the BBC in 2008 when she was 14. Now 21 and training to be a digital artist I look at the art she creates with wonder and joy.  

Emily, my younger daughter who has accompanying learning disability and epilepsy, loves nothing more than putting on make-up and dresses and acting and singing and dancing.  I trained to be an actress and love to write creatively so I guess we all disprove that myth from an early age.

I prefer solitude to company and have anxieties, fears and phobias, which can, at times, overwhelm me. I’ve learnt in my 50 years to present a much colder front that I feel, and conversely that a hug is one of the joys of life. Unless I’m upset, in which case it’s unbearable to me.

I see pain and always know it’s there in others too, whether they make it obvious or not. Whether that stems from managing my own I don’t know, but I can often ‘see’ pain in others. 

I’ve always been vulnerable and trusting yet cynical and fearful, one dichotomy in autism, which baffles many, including me. 

I like structure and frameworks and black and white reasons, concrete resolutions, and complete explanations in people but I love nuance and mystery and complexity and evasion in art and music and theatre and film. 

Above all else I crave and fear friendship, in equal measure. 

Nicky Clark is a Parent Patron for Ambitious about Autism. She has raised two daughters with the developmental disability and is an active disability rights campaigner. She has just launched a campaign called Out of Sight, Out of Mind about how hidden disabilities are often overlooked. Follow Nicky Clark on Twitter: @MrsNickyClark

 

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