Spectrum of light

Charlotte Amelia Poe only leaves the house once or twice a month. Even on the morning of her sister’s wedding, Poe sat in her bedroom dressed up in a gold dress, with curled hair and painstakingly applied makeup, but she was adamant she couldn’t go. Instead, she wondered whether she could Photoshop herself into the wedding photos at a later date, until she finally managed to beat her anxiety at the eleventh hour and made it to the ceremony.

It was the first time Poe, a self-taught artist and writer who was diagnosed with autism at the age of 21, had ever managed to get the upper hand over her anxiety, but as she writes in her memoir How to be Autistic, beating anxiety once doesn’t mean it will never rear its head again, and even after winning a prestigious art prize and doing TV interviews, Poe still experiences days when “depression causes a near physical ache”.

Despite her isolation, Poe has found an alternative way of connecting with the world, thanks to the support of her family.

“I am still quite isolated, but my sister’s family has moved in,” she says. “We have an extension, so I am really lucky to live with her and her kids. They bring the world to me in a way, and I love that. My nephew will come home and tell me what he’s learned at school that day, and it’s just brilliant.”

For Poe, her autism diagnosis happened completely by chance, and years too late. At school Poe’s teachers didn’t pick up on the fact that the child who spent the majority of her time outside the school office begging to be sent home after vomiting on a daily basis may have been battling something more serious than want of attention.

And despite being prescribed diazepam at age eight and a referral to Child and Adolescent Mental Health Services (CAMHS) the doctors and psychiatrists who treated Poe never suggested she take the Autism quotient test, a multiple choice diagnostic tool that can be used as a stepping stone to further investigations.

Instead, it was Poe’s mother, who after years of watching her daughter struggle with debilitating anxiety, depression and agoraphobia, happened to be watching a documentary about autistic people when she noticed the similarities between how they and her daughter behaved.

It was then Poe finally got what she’d been waiting for – an explanation for why she’d always struggled to fit in, a word for the thing she knew she had that set her apart from everyone else, and a reassurance that she was not alone. But the diagnosis was far from a happy ending.

“At first I was really upset, because with anxiety it’s not curable but it’s more curable than autism,” says Poe. “Autism is forever. But it made sense, and I have come to terms with it now. It’s helped my family understand me a lot more, which is I think the most important thing.”

What Poe’s diagnosis did do was enable her to understand her condition, giving her the confidence to create art and write about living with autism.

In 2018 Poe won the inaugural Spectrum Art Prize, a national competition created to celebrate the creative excellence of artists on the autistic spectrum. In Poe’s entry, a short video about being autistic, Poe films herself in her bedroom. Sitting on her bed hugging a pillow, Poe cries as she describes how, for her, living with autism means “nobody will ever tell you what is wrong with you – just that you are wrong, and that what you do and say is wrong”.

Winning the prize made Poe realise, perhaps for the first time in her life, that people are interested in what she has to say, and her memoir soon followed.

“As soon as I got home from winning the art award I sat at my computer and it [the book] felt like a natural extension of the film. I had to expand on that and it felt important to do so,” she says.

“I was so surprised to even be shortlisted and then the fact that I won – nobody has ever really listened before so to be told what I had to say was valuable really changed my perspective.”

Poe’s years at high school are the most disturbing element of her story. In the first chapter about her high school years Poe writes about how the memories make her stomach churn, leaving her feeling so scared she wants to abandon the book entirely. But she perseveres, and what follows is a horrifying account of life under a bureaucratic system that tried to make Poe fit into established lessons and routines that exacerbated her anxiety.

“I was always brought up to respect authority figures,” says Poe. “I always tried really hard to be the best student or pupil I could be. I never spoke back to people when they told me I was being naughty or whatever. I always took it on board and believed that they must be right. When they told me I was making stuff up I just believed them. I think I was very sort of docile in that regard and only towards the end did I realise that actually it wasn’t me that was wrong all the time. It was them.

“For me it was a gradual realisation that people in authority aren’t always doing those jobs for the right reasons. I wish I’d realised that sooner. It was so much easier once you realise you can just walk out of the school gates and no one is going to come after you. It was a way of escaping and I needed that. That was my only way of rebelling and to get out of the situation was to literally walk out.

“I think the only reason I got through my GCSEs is because I got suspended from school for having my nose pierced, so I was finally able to study at home and take the information on board. I was told by my history teacher that there was no way I’d pass my GCSE history, but because I got to study at home, I actually passed with an A.”

Poe believes the stereotype of autism being typically associated with males may have prevented her from getting the support she needed.

“There’s a term called masking which is quite common in girls and people who are assigned female at birth, which means that with autism we are much better at blending into society because a quiet girl is not seen as something which is different or in any way remarkable, and a lot of our behaviours, such as being shy or bullied, can be seen as being difficult or being awkward. I just don’t think it’s looked for, and especially when I was at school it wasn’t really seen as a condition that all genders can have.”

Now, Poe is committed to challenging unhelpful stereotypes about autism and paving the way for autistic people to find and use their voice creatively.

“Autism can affect anyone, and I think we need more representation. I’d like to see more autistic characters in books, TV and film, but I want them to be written by autistic writers as well. A lot of people think they know what autism is like, so they don’t do the research and that’s where you get the stereotypes.”

How To Be Autistic (Myriad, £8.99) is out now