A diagnosis story and some advice

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I was in Liverpool Street station, completely lost and unable to speak. It had been a tiring day. I was on my way back from a photoshoot in London, my phone was dying, and no matter how hard I tried, I couldn’t figure out which train I needed to get on to get back home to Norfolk.

I asked the station staff for help, but my speech came out in a jumble. I ended up panicking in the station for hours until, finally, my older sister managed to direct me to a taxi over the phone so I could spend the night at her place.

I recognise now that this was an autistic shutdown – a response to extreme overload or stress that can cause an autistic person to withdraw and become non-communicative. It was at this moment that I realised I needed to push for a diagnosis of autistic spectrum disorder (ASD).

I had been self-diagnosed with ASD for well over a year when I had the shutdown at the train station, but it took a long time to get to this point.

Growing up, there were definitely signs of autism, but everyone just thought I was ‘quirky’. I had a special interest – something common among those with autism – but perhaps because that interest was fashion, it didn’t register with anyone as out of the ordinary.

At one of my first parents’ evenings in year one at school, my teacher let my parents know that I was “still getting my naps and alone time”. On the parent portal when I first started secondary school, I was listed as having special educational needs. My parents were confused at the time but looking back we now think that teachers already assumed I’d had some sort of diagnosis.

By the time I got to secondary school, I had become a pro at ‘masking’ – a technique many autistic people use to try to fit into society. I remember at 13, my friends told me that a boy I really fancied thought I was really attractive, but would never date me because I was so ‘weird’. From then on, I made an effort to be more ‘normal’. I stopped dressing in the quirky way I was known for and became much quieter to avoid saying anything odd.

It was only when I started being more independent that the fact that I had autism became obvious. I’d always had my sisters and parents to rely on at home and, by this point, I’d had a long-term boyfriend for around five years too. Even at university, I lived with other girls who would check in on me. As a result, my issues only really became apparent when I started modelling at the age of 21 and had to travel alone for shoots.

Eye contact and hand gestures are very considered for me – they don’t come naturally. My voice is also very monotone and deadpan, so I still make an effort to change that and try to mimic the way that neurotypical people speak. It’s exhausting.

While experiencing that shutdown in Liverpool Street station was extremely traumatic, it did spur me towards getting an official diagnosis as soon as possible. My mum attends all of my doctor appointments with me because it’s easier that way and she helps me get my point across.

When I was explaining to the GP what happened at the station, I burst into tears. I felt embarrassed and like they wouldn’t believe me. It took a lot of pressure from my mum to finally get a referral and I built up a case file of all of my experiences, which was intense.

When I got the letter to confirm my referral they told me I’d need to wait around three and a half years to be assessed. Luckily, a trial was being conducted in my area to help young people seeking a late autism diagnosis get diagnosed quicker, so I was referred to a private assessment centre within the next few months.

Having an official diagnosis and a hidden disabilities badge really helps. It doesn’t give people room to question why I’m different and gives me the confidence to ask for the adjustments I need. You can get a hidden disabilities badge or lanyard without an official diagnosis, so having one helped me massively while waiting for the verdict from my assessment.

My hidden disabilities badge has my mum’s number on it so people know who to call if I experience another shutdown. I always joke that I’d have my parents’ numbers tattooed on me if people’s numbers never changed.

I used to beat myself up about getting burnt out so easily but now I’m much kinder to myself, and when it comes to dating and going to restaurants, I don’t feel like I need to explain myself for not eating or choosing something plain.

I still get messages and comments from people saying things like, ‘I have autism and she doesn’t seem autistic to me’ or ‘My cousin has autism and he’s nothing like you.’

My advice to other women going through the process of getting an official diagnosis is to reach out to others; don’t isolate yourself.

When I was being diagnosed my family and friends took the time to understand autism better and check in with me to see how they could support me. So, another piece of advice I’d give is to let the people around you educate themselves on ASD. It’s not your job to educate them.

If you prefer to communicate with people online, the #ActuallyAutistic hashtag is a great way to feel connected to other people that are like you.