Stories from the Spectrum: Alis Rowe

In this Stories from the Spectrum interview, we spoke to Alis Rowe.

Meet Alis Rowe, the autistic creator and entrepreneur behind the Curly Hair Project, a social enterprise that creates resources to support autistic people, their families and carers.

Alis speaks to us about why she created the character, The Girl with the Curly Hair, to help the world understand autism better…

What made you seek an autism diagnosis?

I wanted an explanation for why I could not fit in with other people and seem to have “normal” relationships, as well as an explanation that I could give to people who misinterpret my behaviour as me not liking them, or being uninterested. For example, at the end of university, all the students and lecturers met up on a sunny day by the river to celebrate. Everyone was having a wonderful time. I stayed ten minutes. I had made a massive effort to attend, but it was such an excruciatingly difficult experience.

How did it feel when you got the diagnosis?

My diagnosis came as no surprise, as I was certain that I was autistic, but it was very comforting as I finally had an official explanation for all the struggles throughout my life. Being diagnosed at 23, later than the national average, is both positive and negative. The positives are that I have probably become far more resilient and tolerant.

I feel like I am insightful about people, because I spent my whole life observing them and wondering how I could be more like them.

However, I do think that an earlier diagnosis would have helped me emotionally. I would have loved to have found a book or a person that I could relate to.

What is being autistic like for you?

Being autistic, for me, means having a very strict and rigid routine and feeling devastated, like the world is going to end, when it gets disrupted. When someone shows up ten minutes late, asks me to do something last minute, or strikes up spontaneous conversation, it causes me an enormous amount of stress.

Being autistic has also contributed to me being extremely introverted. Being around people for any length of time is exhausting. I cannot do a lot of ‘normal’ activities because they require me to be around other people for too long. I also have to work very, very hard to be responsible, polite and friendly, even though I’m feeling very flustered and anxious.

I’m not affected by sensory sensitivities as strongly anymore because I spend a lot of time at home, but whenever I am out, smells can make me feel sick. Sudden noises are unbearably painful to my ears. Background noise, such as the TV or music that other people can find interesting or calming, can irritate me. It does not matter what it is – a conference, a visit to the dentist, going shopping, or going to a theatre or restaurant – I am always counting down until I can be alone.

Why did you start the Curly Hair project?

I started the Curly Hair Project as a journey to help me understand myself. It ended up helping thousands of other people as well, as at the time I thought there was a lack of resources for adult women on the autism spectrum, so I started making them. I also really love to write, so the project was an outlet to write books, articles, stories, lyrics and discussion posts.

Why did you call your character The Girl with the Curly Hair?

I am Alis Rowe and I am The Girl with the Curly Hair. I was known as The Girl with the Curly Hair when I was at school. I was always teased for being ‘different’ and having curly hair also made me stand out.

I use The Girl with the Curly Hair character to explain what being autistic can be like, so the world can understand autism better. She enables me to educate people on quite difficult and often upsetting situations, while remaining relatively emotionally detached. I can also exaggerate things and create fictional situations when I am describing autism using The Girl with the Curly Hair. Alis Rowe is too sensitive, too shy, too quiet and too real.