When her daughter Libby was diagnosed with autism aged ten, Kym Scott feared it would hold back her little girl. But Libby, now 12, is forging her own path – and is already a published author twice over.
Kym Scott, 48, is an educational speaker and lives in Kent with her partner Steve, 64, a musician. They have two daughters, Rosie, 22, and Libby, 12.
Libby was just nine when she told me she hated herself and didn’t want to live any more. I’ve never felt more helpless than in that moment.
No mother holds their newborn baby and imagines that one day they’ll find themselves mired in a world of psychological assessments, desperately seeking help and answers. By the time Libby was eight, I knew in my heart she was autistic, and I hoped a diagnosis would get her – and me – support. But I also feared she’d resent me later for having this label placed on her.
Until she was five, Libby was a very bright but typical little girl. I trained as a teacher and had worked with autistic children, but there was nothing about her behaviour which ever rang alarm bells. It was aged six onwards, as other children matured and were more able to manage their emotions, that I realised Libby was struggling. She was prone to explosive tantrums – or at least that’s what I thought they were. I know now they were stress-related breakdowns, brought on by the effort of coping with everyday life. She also became very controlling. She hated it if anyone was emotional or expressive, and would make me promise not to laugh loudly or dance at a family party. With hindsight she was projecting her deep-rooted desire to blend in. Her thoughts were obsessive – she was very insecure and anxious, worried we were all going to die.
I convinced myself Steve and I were to blame; that we’d done something wrong and were failing Libby as parents. My guilt and shame were exacerbated by the fact she was having no issues at school. Libby was seven when, while doing some research for work, I came across the term Pathological Demand Avoidance (PDA). It’s a developmental disorder that falls under the autism spectrum. Its main characteristic is the extreme inability to meet everyday demands and expectations, even those placed upon oneself. It can lead to very controlling – even violent – behaviour, and is usually accompanied by high levels of anxiety.
It described Libby perfectly but I was terrified. I didn’t want this for my child. What mother would? I knew I couldn’t live in denial and let her suffer, though. With great trepidation, Steve and I opened up to Libby’s school about her behaviour at home, convinced they’d judge us. They couldn’t have been more supportive.
They assigned extra classroom support and observed her more closely, realising she did become stressed by simple commands, and was mimicking other children’s social behaviour rather than it coming naturally to her. Bottling this up through the day, she’d come home and explode. It’s something I’ve since heard from grown autistic women; the sheer effort of focusing on how to act and how to react in social situations leaves them exhausted.
The school referred her for an assessment, but as months passed, Libby was becoming more aware of her behaviour and was struggling. She’d shout at Steve for playing his guitar then become upset, her internal turmoil palpable.
‘You must hate having a child like me’, she’d say. ‘I hate myself.’ It broke my heart and I made the decision to share with her my belief she had PDA. At first she was furious and refused to listen. But with time she accepted and agreed.
She was first assessed on the NHS, but we were told she didn’t meet the criteria for an autism diagnosis. I knew from all my research – and maternal instinct – that they were wrong. We paid £3,000 for a private assessment and, in April 2018, Libby was finally diagnosed at the age of ten. I felt such an overwhelming mix of emotions: relief that she’d get the support she needed, vindicated that she wasn’t a ‘bad’ child, and fear. Was I up to the challenge of mothering Libby in a different way? Being Libby’s mum has changed my own preconceptions of autism. She’s funny, quirky and thrives on relationships – nothing like the stereotypes of autistic people having learning disabilities or being savants [geniuses]. But just because she has more insight into her traits doesn’t mean it’s easier for her to live with them.
I used to lie awake at night torturing myself, mainly about Libby’s mental health. I also worried that other people’s prejudices would close doors for her. Libby has shown me she can forge a path for herself. In July 2018, I tweeted a piece of her writing called The Life of a Perfectionist. It was fictional but reflected many of her behaviours. I shared it simply as a proud mother, not expecting it to go viral, with tens of thousands of people liking and retweeting it.
As a result, Libby was offered a book deal and paired with a wonderful author, Rebecca Westcott. Her first novel, Can You See Me?, was published last year, with her second, Do You Know Me?, out this month. Both are fictional but much of what the character, a girl called Tally, experiences is drawn from Libby’s own struggles.
From interviews to book signings and speaking at conferences, I’ve watched on, amazed at Libby’s courage to give autistic young women like her a voice. And hearing from other mothers that for the first time their daughter feels understood is overwhelming.
I’ve been asked if, given the chance, I’d take Libby’s autism away. The answer is no. It makes her who she is. She is my Libby and I wouldn’t change her for the world.
Libby Scott, 12, is a secondary school pupil and author.
For as long as I can remember, I’ve known I was different to other girls my age. I’d watch them and copy how they behaved, but I couldn’t relate to them at all. I felt like I was on the outside, always looking in and wondering why I felt that way.
After I was diagnosed, I felt happy. Knowing that it was autism making me behave in ways I knew upset others helped me feel better about myself. However, it’s still difficult never feeling like I’m fully in control, and as I get older I do worry people will pre-judge me and not want to get to know me because of this label.
Mum may say she wouldn’t change me but there are days when I would change myself. When I feel like that, Mum tells me to ‘change the channel’ in my mind, and think more positively, which is good advice.
I’m happiest when Mum and I are planning our next trip to see Little Mix in concert – I’m a big fan and have converted her, too. She also takes me on mini-breaks to hotels and I love that time we spend together, just the two of us.
For me, being autistic is almost like being two people in one body, with the demand-avoidant ‘me’ always more dominant than the other ‘me’. I hear myself losing my temper, shouting at someone I love, and I know it’s wrong but I can’t help myself. Then afterwards I feel so regretful. I’m always battling that side of me, and it makes everyday life hard.
Writing my books has set me on such a positive path. It’s helped me not only accept autism more, but to realise I can help others, too.
I first started writing out of boredom. Stuck at home one afternoon, I began jotting down a short story. It felt good to express how I was feeling but in a fictional way, because it can be hard for me to explain my emotions. When Mum’s tweet went viral, l was stunned. I’d hoped it would get 100 likes – to date it’s had over 56,000!
I’ve never wanted to speak for other people who are autistic – they all have their own voice. Instead, I’ve wanted to encourage them to use it. If I can find the courage to speak out, and shake off my fear of being misunderstood, they can too.
Kym and Libby in four
Describe each other.
Kym: Creative, quirky, funny.
Libby: Clever, fun, supportive.
When you’re together…
Kym: She makes me laugh more than anyone else.
Libby: We sing along to Little Mix.
Favourite memory of each other.
Kym: Telling me over breakfast, when she was three, that she was thinking of all the words in the world.
Libby: Being in the front row of a Little Mix concert with me at the O2.
Their worst habit.
Kym: Biting her nails.
Libby: Telling me off for biting my nails.
As told to Eimear O’Hagan.