The Girl with the Curly Hair - Asperger's and Me

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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. 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.

Bless your good work with which so many minds have been able to be understood & others to “understand others”. Thank you for your devotion, your passion to what God gave you, the talent & intelligence to understand aspergers & to write everything you understand.” I was diagnosed with Asperger’s Syndrome when I was 22 and I started The Curly Hair Project to innovate the way the world views and understands autism. I’m extremely passionate and disciplined about what I do!

Starter Set for Autistic People

I started my career in Human Resources, and at the point I commenced my maternity leave I was a Deputy Director in HR in the NHS. Like many people, after children, I started to look at what I was doing and decided that I wanted to do something that fitted better with my family, so retrained as a teacher. 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. 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. I have combined all of my interests and skills – and learned plenty of new skills along the way! – to create some amazing resources including: books, visual guides, blog, infographics, podcasts, training courses, webinars, songs and animated films.

It may be very helpful for you to learn more about autism and common strategies other autistic people use to manage their life. Everyone on the autism spectrum is different, so finding a particular author or speaker that you can personally relate to might also be helpful. Any upcoming projects? 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? I have had the privilege of working with Alis longer than any other team member and have enjoyed helping Alis to build and manage the team of trainers that we have, across the UK. I have enjoyed speaking with Alis at NAS conferences and being interviewed with her on BBC Radio 4’s Woman’s Hour. During my time at Curly Hair Project, we have developed the range of training offered, now have numerous corporate clients and have also introduced webinars. During the Covid-19 period, this experience proved invaluable as we delivered all training via webinar. It is thought that lots of autistic women and girls present as very quiet, shy and introverted, which means that their problems can be ‘invisible.’ Nobody thinks that there is anything wrong, because sometimes they don’t express themselves, or interact much in everyday life. They may have very high anxiety, but not externalise their thoughts and feelings. To the outside eye, this sort of person is quite ‘neutral’ and isn’t ‘challenging’ or ‘naughty,’ so no one really notices them. However, I always say that people noticed that I really struggled to interact with other people when I was growing up– being so invisible made me stand out! What advice would you give to someone who has just received an autism diagnosis?

Autism & Anxiety for Autistic People

I discovered Alis and her work in 2014 and felt an immediate connection. I read Aspergers & Me and felt that Alis was writing about my daughter. It helped us make sense of so many things that had happened to our daughter, growing up. The training, books and social media posts were such a fantastic support to our family as we learned to understand the diagnosis and how it presented itself in our daughter. Going forwards, Alis never stops creating new and innovative ways of communicating her experiences of the world and strategies that support it, more recently through her animations and also her own songs. CHP has something for everyone. 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. Although I am based in the South West, I am proud to support Alis and CHP throughout the UK, as needs require it. I believe that the work that we offer is unique; written by an autistic adult, delivered by a parent of an autistic child, we are “experts by experience”. For parents and professionals alike, this gives great insight. Thank you for all you have done and do Alis. Have been following you since the beginning, and you will never know how much help you have been to me and my family, and how much you helped me to change my own opinion of myself.”