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'On my 21st birthday, I was diagnosed as autistic – it came as a huge relief'

The Telegraph logo The Telegraph 17/03/2021 Kirsty Lavender-Newns
Kirsty Lavender-Newns was diagnosed with autism on her 21st birthday © Provided by The Telegraph Kirsty Lavender-Newns was diagnosed with autism on her 21st birthday

On my 21st birthday, I was diagnosed as autistic. It might not seem like the ideal present, but it came as a huge relief, both to me and my mother.   

For most of my life to that point, I had known that something about me was different. When I started school, I’d felt completely overwhelmed. But I’d been struggling with lots of things even before this. I was late to speak and walk and I had problems with co-ordination and spatial awareness. I often got into trouble for things and I wasn’t sure why. I was already under a Child Development Team, but this didn’t provide the support I needed.  

My mum knew how affecting my difficulties were: anxiety, problems making friends, speech and language, struggles with my hand-grasp and other things. But she felt she wasn’t being listened to. She wanted to obtain what is now known as an Educational Healthcare Plan (EHCP) for me, which would have provided me with so much support from my first year of school onwards. But she was told by my teachers that the label, as it was then, of being “statemented” would have been a bad thing. 

Still, she persevered, taking me to occupational therapy and speech and language sessions. Yet nobody suggested autism as a possibility, or even dyslexia, which is easier to diagnose.  

By the time I was eight years old, I was having suicidal thoughts. My mum tried to get support from the Children’s Adolescent Mental Health Service (CAMHS) but they said it was a social problem that would pass; that I just wasn’t making friends. Again, we were ignored when we were desperately reaching out for help.   

Then secondary school came. I went to an all-girls school and I loved many of the new things we were learning about, as I’ve always had a thirst for knowledge. Yet I still lacked friends and felt I didn’t understand what people wanted from me. 

I knew the rules that society wanted me to abide by: as a young woman, I must be compliant, yet friendly, funny, and sociable. I really didn’t want to be an outcast. So I learnt to “mask”, which is really common among autistic people, particularly girls. I learned how to pretend to be someone I wasn’t and to suppress my stimming (movements that are sometimes involuntary in the autistic community and also described as tics) and constantly think about the way I said and did everything. I even forced myself to act out the latest fashion trends. I tried to be an “emo”, a surfer girl and have that “preppy” look. But these were things in which I had no interest whatsoever.   

Trying to mask every day was extremely taxing, but I felt it was my best bet for feeling accepted. It was only when I got home that I could let out my true emotions, and there I would have huge meltdowns, which was hard for my mum and me. 


Video: Children in care: 'I felt completely worthless' (Sky News)

Because I got so good at masking and my grades were generally an average C, it made it harder to seek out help, or even understand what was different about me. It was almost as if I wasn’t autistic enough.  

I was eventually diagnosed with dyslexia and dyspraxia at age 17, which helped to explain a big part of me. But not everything. 

a woman smiling for the camera: Kirsty writes about the struggle to receive her diagnosis © Provided by The Telegraph Kirsty writes about the struggle to receive her diagnosis

The following year, I went to Reading University to study Ancient History, which I was passionate about. But I was still struggling with life and was assessed by a psychiatrist, after a previous assessment had found nothing “wrong” with me. He said he thought I may be autistic, but that a formal diagnosis could take two years. It was such a hard and pivotal time in my life, during which I was suffering multiple mental health problems. The pressures of university, the burdens of masking and a potential autism diagnosis hanging over me left me feeling stressed and overwhelmed.  

I was lucky enough to go private to get my diagnosis, so in the end the process only took eight months. But it came as a shock because autism had never been mentioned to me. I didn't know anyone who was autistic, or what it meant to be an autistic woman. It was also hard to adjust because of the stigma surrounding autism, which I feared might make my even life harder. But there were positives too. I finally understood who I was. 

Not long afterwards, I went on to get my degree, of which I’m so proud.  

Following that, I won a travel scholarship from the Society of Dilettanti and have since been volunteering and trying to find a job, something many autistic people find difficult.

I’m 25 now and when I think back to my struggles throughout school and adolescence, I realise an earlier diagnosis could have made life so much easier. Because actually the only bad thing about an autism diagnosis is the stigma surrounding it, and all its accompanying judgement and misunderstanding. If that were to be stripped away, young people could embrace their neurodiverse selves early enough to know who they are and educate those close to them about their difficulties.   

It really can be an invisible disability. And it’s sad but true, that autistic girls are generally diagnosed much later in life, because they’re good at masking. I still do it myself, as if I’m on autopilot, because that’s how I lived for so long. I get confused about what is learned behaviour and what is really me. But although I still struggle with severe anxiety and low self-esteem, it’s getting easier to move forwards.   

Now I’m working for the London Autism Group Charity, and it feels so good to finally be in a community that’s full of acceptance. It’s been my constant source of help and understanding and I no longer feel isolated. I’ve no doubt every neurodivergent person has gone through a challenging journey, whether it be related to their condition, or to the stigma and its associated consequences. 

If my story helps in some small way to make others aware of the importance of early support, diagnosis and acceptance, then it will have been worth it. 

As told to Emma Lazenby

 

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