Latest news with #HoldFast
Times
02-08-2025
- General
- Times
Nina knew she was different, but girls weren't meant to be autistic
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. • Read more parenting advice, interviews, real-life stories and opinions 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? • How to survive the years-long wait for your child's autism diagnosis 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.' • Read more parenting advice, interviews, real-life stories and opinions 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.
Euronews
22-04-2025
- Business
- Euronews
Read, think, act: Meet three booksellers guiding people through the climate crisis
ADVERTISEMENT 'Books are a comfort, they are a way of seeing things differently,' says Victoria Bonner, co-owner of Hold Fast bookshop in Leeds. Her bookshop is on a boat - a former 1946 Yorkshire coal barge, to be precise. On the same stretch of waterway where it used to ferry coal, the hull is now laden with a variety of genres. 'At the moment there's just tonnes of really gorgeous books about nature, about gardening, about the planet and the oceans…' Victoria says. 'It's so difficult not to have too many, to be honest, we could sink the boat with how many there are.' Related New year, new reads: Here are my favourite climate-related books from 2024 On the high street or waterway, bookshops are among the most comforting of public spaces. But like the books they hold, a good bookshop also expands our horizons - and better equips us for the challenges of the modern world. At a time of climate breakdown , they have a vital role to play. From Leeds Dock to the cobbled streets of Dorset and Edinburgh, we spoke to booksellers about the joys and responsibilities of that job. Matching the right book to the right person At the simplest level, people need information. 'A lot of what you come to online is clickbait, or it's nonsense, or it's strongly opinionated TikToks with no groundwork in reality,' says Victoria. 'I think people want to look after the planet, but they don't always know where to start.' 'Nature writing' can be a narrow section in some bigger shops, but is given breathing room and space to mingle with other titles at independents. It is part of a rich ecosystem of environmental and climate books. FOLDE - at the top of the iconic Gold Hill street in Shaftesbury, Dorset - focuses mainly on climate action, conservation, wildlife and land management, nature fiction and nature memoir, as well as books about the natural world for children . 'One of the really important roles of booksellers [is] to understand what a person is looking for and to match them to the book that sets them on a journey,' says co-founder Amber Harrison. A 'fiery and fact-laden' book would be an ill-suited guide to somebody searching for hope, for example. More fitting would be one that offers steps forward, from making personal changes to taking action within an organisation or lobbying at a higher level. Alongside non-fiction, Victoria sees a special value in folklore and fairytales, 'that encourage people to make connections with the land' - through stories that 'for many years have been used as a way to protect the Earth.' Hold Fast, in Leeds Climate Innovation District. Similar to folktales, waterways 'seem to bring the countryside into the city because they move through both,' says Victoria. Hold Fast Bookshop Jessica Gaitán Johannesson is the digital campaigns manager at Lighthouse, described as Edinburgh's radical bookshop. 'The way we see it, books are the starting points of action making and of change making,' she says. 'It's not enough with people reading climate fiction or books about environmental injustice. What do you do when you put the book down?' As a hub for grassroots organising, the shop connects people to groups they can join and actions they can take after reading a book that fires them up. Related UK universities are divesting from fossil fuels while the rest of Europe lags behind Fish door bells, plastic-eating fungi and tree hugging: Positive environmental stories from 2025 Organising the world with language For Jessica, a bookseller's role is to 'push against this idea that the climate crisis can in any way be separate from all our other crises that we are living through at the moment.' 'Radical' comes from the word root, she notes. It entails going to the root of problems , rather than talking about superficial solutions. ADVERTISEMENT Bookshop curation, reading lists, events and one-to-one conversations are ways of offering a deeper analysis and highlighting climate connections - seeing what resonates for individuals. Jessica outside Lighthouse, Edinburgh's Radical Bookshop - "as much a hub of organising and activism and community connection as we are a bookshop." Lighthouse Conversations can take books out of the neat categories that publishers put them in for ease of reference. While curating requires an adaptive approach, she says. 'It's about people being able to find the right books that they're looking for. But also, maybe people being exposed to other kinds of books they might not otherwise have found.' Lighthouse has a nature and environment section where they make sure that underrepresented writers are easy to find, since 'nature writing by tradition has been very, very white and very middle class.' 'It's important to hold your values true,' says Victoria. 'I think that's what people love about independent bookshops, every one of us is different.' ADVERTISEMENT Hold Fast only sells vegan cookbooks, and travel books that don't encourage flying. Visitors perusing its up-cycled shelves can also purchase oat milk chocolate. Chris and Victoria, owners of Leeds' much-loved floating bookshop. Hold Fast FOLDE embodies its environmental values too. It runs on 100 per cent renewable energy, and is the first bricks and mortar bookshop in Europe to be certified as a B-corp , says Amber, who co-founded the shop after a 20-year career in sustainability in the IT and aviation industry. But Lighthouse takes the remit of a climate-conscious bookshop a step further, by organising probing events and campaigning for a book trade free of fossil fuel investments. Related 'An eye between nature and itself': These are the best Irish ecopoets Don't look away: This book is a wake-up call to our 'monstrous' waste crisis and how to solve it From the shop to the digital sphere Lighthouse is both the physical shop on West Nicholson Street, the digital space that the booksellers operate in, and an Edinburgh book fair they organise every year, says Jessica. ADVERTISEMENT Online, they commission blogs from local climate justice organisers, and livestream events so they're accessible to all. The inaugural Climate Fiction Prize shortlist is covered in a blog that contextualises the prize with historical works and links out to current climate campaigns. Meanwhile, the Radical Book Fair, which Jessica programmes, has a unique emphasis on activism. Each panel of authors also includes at least one local organiser, further embodying Lighthouse's 'read, think, act' mantra. They also support the work of Fossil Free Books , a collective of book workers organising for an industry free of fossil fuel funding, many of whom are based in Scotland. 'The publishing industry is taking steps to reduce its impact on the climate so there are initiatives like Publishing Declares where organisations and publishers and booksellers can sign up to the sector's first declaration on climate change,' adds Victoria. ADVERTISEMENT 'There are some publishers who are starting to really think about the carbon footprint of the books that they produce, and that's really good to see.'
