In 2018, Libby Scott went viral after her mum posted some of her writing about autism on Twitter. The next year, she wrote Can You See Me? about an autistic girl called Tally navigating school and her social life, co-written with YA author Rebecca Westcott. Now 14, Libby is publishing her third book, focused on the process of getting a diagnosis. She tells The Big Issue about the life-changing experience.
Libby thought this latest piece might help those who parent children with autism. It's vital to remember that no two autistic people are the same or need the same thing. Libby has a demand avoidant profile, similar to PDA, so these are things that she has found have helped her. pic.twitter.com/0MSzHRrFxg
The Big Issue: When you look back, are there things that make more sense after you had a diagnosis?
Libby Scott: Well, for me it was mainly the feeling that I was somehow different to everyone else and I just didn’t know why. Also I now know what “demand avoidance” is. Somebody would tell me to do something and I felt almost physically incapable of doing it, unless they asked me in a very specific, less abrupt tone.
When you talked with doctors, did they seem to understand?
The first doctor we saw thought that parenting was likely the root of the problem instead of autism. They sent my parents on a course, which they didn’t mind, but I knew it was about me more than them. My mum asked if I had Pathological Demand Avoidance, which is an autism trait I have. That doctor just said, “Oh there’s no such thing really, you’ve just seen that on the TV, haven’t you?”
Then my parents paid to go to the Lorna Wing, which specialises in diagnosing autistic girls. They spent hours speaking to my parents, believed what they said, and then hours speaking with me, too. They seemed to understand autism a lot better. It’s a shame my parents had to pay to get that – what about kids whose parents can’t?
What were these conversations like?
They got me really relaxed and chatted to me. I enjoyed it actually, though I was nervous before. They mostly just asked me questions about what I find hard and things like that. They had me do a memory test where they said a list of numbers and I had to repeat them backwards, which I did quite well.
When you received the diagnosis how did you feel?
I remember being told about the results of the process and they told me that they were certain I had autism spectrum disorder. It didn’t exactly take me by surprise, but it was quite a strange time for me because there were worries, like me thinking people would treat me differently, and that I’d get bullied for it. But I also was quite relieved that I now knew, because it meant people could also understand me better and I could understand myself at long last. When I got diagnosed it was like a weight off my shoulders. It gave me a reason why I felt and behaved the way I did. I could really know who I was at last. Getting diagnosed stopped me hating myself because I understood myself better and didn’t have that constant question in my mind asking why I was like this.
Autism affects people in different ways. Does it help you understand your own – and other autistic people’s – behaviour?
Now that I have that label it actually helps me with finding solutions to my problems. I can spot and connect well with people with ADHD and autism – it’s like a special gang that I wasn’t a part of before.
What would you want other parents to know if they are concerned about their child and wondering if they should take them to a doctor?
I would 100 per cent go for it, it will always be better in the long run to know who you are. If I didn’t have my diagnosis I wouldn’t be where I am now. It’s always the better option to look into it as much as you can at a young age.
What would you want other autistic kids – who may or may not have an official diagnosis – to know about what you’ve learned?
Just know you’re not alone – there’s always someone either going through the emotions you are, or who can help you in different ways. There are Facebook groups that you or your parents can join, lots of TikTok videos, and books like mine and Rebecca’s, which can help you and others to understand you. Plus the PDA society [for Pathological Demand Avoidance] and the National Autistic Society.
A diagnosis doesn’t define someone, so tell us more about yourself…
If you saw me in school you probably wouldn’t think I was autistic and that’s why girls get missed for diagnosis. That’s because of everyone else’s perspective and stereotypes of autism and what they imagine it looks like. But I have a lot of things that I enjoy doing like hanging out with friends, horse riding, singing and song-writing. When somebody’s diagnosed it’s nothing to be afraid of, you are just the same as before but now you know why.
Ways to Be Meby Libby Scott and Rebecca Westcott is out now from Scholastic
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