Nina knew she was different, but girls weren't meant to be autistic

Times

8 hours ago

My first book was a novel about a woman struggling to raise an autistic child. It was called Truestory but it was fictional — or at least the characters, the setting and the plot were made up. But the knowledge behind it, the insights into raising a child who didn't appear to fit into the world and to whom the world was often cruel, were very true.
My autistic daughter, Nina, was 15 at the time Truestory was published, and when ​the novel came out she approved of the depiction of autism, remarking: 'It shows the world that we can't turn our weird off.'
Now Nina is 30, and thriving, so I decided it was the right time to publish Hold Fast: Motherhood, My Autistic Daughter and Me, the real story of raising an autistic child.
As a young child Nina was hard to comfort. She could get distressed for long periods, crying and crying, and, most difficult, she hardly slept. She was frightened of things I couldn't see. She often didn't answer to her name and appeared not to hear me when I tried to reassure her, although doctors confirmed she was not deaf.
She was clearly highly intelligent. She loved books, and from 18 months old was writing a rudimentary alphabet.
To encourage Nina to fit in socially I tried coaxing, cajoling, persuading, distracting and going with the flow — what other people probably thought of as indulging her. I was constantly problem-solving and developed more diplomatic skills than a top-flight United Nations envoy, but I still had to give up on mother and toddler groups because they were so stressful. I always felt on the outside and left them — usually early — lonelier than ever.
Nina and I spent a lot of time alone, and I would push her round the charity shops in her buggy, just the two of us, buying her little toys to play with. One day, I had obviously been in one charity shop too many and she was hungry, so I dashed into a nearby café to give her a snack. She was panicking and furious. An old man at the next table, slumped over his cup of tea and newspaper, announced to the room in general: 'You've done something to that child to make her cry like that.'
I said nothing but felt like I had been slapped.
When Nina was two and a half, we took her to the hospital to see 'the leading expert on autism in Scotland'. I tried to explain what was going wrong, but he laughed — literally laughed in my face — as he said: 'That child does not have autism.'
It was 1997, and autism was still considered a boys' condition. He told me I was giving her the wrong kind of attention, and I left with strict instructions to ignore her if she had a tantrum.
A few days later, I was out shopping with Nina in the buggy when she started screaming. I was heavily pregnant with my second daughter, Lara, and I could feel the sweat prickling my back as her screams rose, but I had my instructions: I must ignore this tantrum. A little old lady with a grey anorak, grey shopping bag and grey perm sidled up: 'You're not fit to be a mother leaving a child to cry like that. I'm glad you're not my mother.'
Whereupon I burst into tears.
Nina's lack of sleep complicated everything. She would lie in the dark with her eyes open, apparently unable to drop off, and still be awake hours later.
She was excited about starting school: delighted with the uniform, the plaited hair and the idea of being more grown up. Sadly, the shine soon wore off and she became deeply unhappy. She asked me not to make her go to school, but thinking I was doing the right thing, I insisted. I felt like a monster, and I regret it still.
The school referred her for an assessment by psychologists. Once again, I was told she had 'no hardwiring problem' and that the problem was me. This time, rather than giving her the wrong kind of attention, I was accused of giving her too much attention. I was sent on a parenting course and introduced to the cult of star charts and naughty steps — neither of which made a blind bit of difference but just gave me something else to administer.
Nina tried to deal with her unhappiness in imaginative ways: casting spells to make people like her, writing to Tony Blair to ask for permission to leave school.
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When she was ten, the school psychologist sent me on yet another parenting course. I was nothing if not a well-qualified mother. This course swore by 'time outs', which was the naughty step in another guise and no more helpful. The course leader told me in no uncertain terms that if I treated my child differently, I would have a different child.
More helpfully, my GP referred us to the child and adolescent mental health services, where we saw a real-life, fully trained, NHS medical doctor; a consultant in child and adolescent mental health; someone with an actual medical degree. What a relief. Dr C gave Nina melatonin which allowed her to fall asleep easily for the first time in her life. She also arranged for Nina to get an autism diagnostic observation schedule which confirmed: Nina was autistic.
I had suspected this but was still shocked and deeply shaken that the official landscape of our lives had changed in the space of one sentence. I was frightened. What did Nina's future hold? Would she ever find her niche in this world?
Ten years of not really understanding her, blaming her for being her, showing frustration with her, being told all our troubles were my fault, feeling like such a failure, and now here was the explanation given in one simple sentence.
I researched frenziedly. The more I read, the more obvious Nina's autism became: the hypersensitivity to noise, smell, heat and touch; being able to detect individual odours of pedestrians in the street. Being able to hear fluorescent lights, fans and fridges from the next room, and folding her ears over if a baby was crying nearby. Being able to smell the honey in a flower and the fruit in the wine but hating being at the service station because it reeked of petrol. Being sensitive to zippers and waistbands, hating having her hair brushed and cut, being tapped on the shoulder or other unexpected touches, her discomfort in crowds and playing team sports.
I remembered the hyperlexia, the ability to decode letters very early. Her intense interests, 'special interests', in dinosaurs, planets, times tables, Pokémon and so much more; her deep concentration that took her away from this world and into another; her agitation around change and transitions; her difficulty fitting in at school and making friends because other children could sense a difference. The tantrums she had had over the years, which I now understood to be autistic meltdowns — expressions of distress when the world had overwhelmed and overloaded her hypersensitive brain.
Looking back, it seemed Nina had been presenting as a classic case of autism for years. How had this diagnosis taken so long?
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We had been sent up a blind alley when she was two years old. Then, once up that blind alley, we had ricocheted from psychologist to psychologist for another eight years, psychologists whose sole purpose seemed to be to make me force Nina to conform. In other words, to make me responsible for Nina following society's rules to such a degree that she would fall into line and not cause anybody any inconvenience, at school or anywhere else, and in effect for me to compel her into not being autistic at all.
These professionals, it seemed, feared labelling children with a lifelong condition, but didn't seem to mind labelling the parents as failed. However, if a condition is lifelong, surely it is better to understand it as early as possible, to help both the child and their parents. How can autistic people get the support they need if they are not armed with a diagnosis?
Somebody once said 'we name in order to see better', and putting a name to Nina's condition certainly made me see her better. A year before her diagnosis, aged nine, Nina wrote her life story, and said: 'I lead a normal life, but I am not normal myself.'
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How lonely that sounds. When I had asked her what she meant, she replied: 'I do not think like other people.' Nina had known better than all of us, all along.
I hope Hold Fast encourages understanding of difference. I hope it helps build compassion. I hope it makes people less judgmental about a child's behaviour when it appears that the child is 'not trying hard enough to fit in'. I hope it helps other people realise they are not alone and helps them to hold fast, and to realise that despite today's challenges there are great achievements and happiness to come.