Terry and Lisa Lloyd with their children, Fin and Poppy, on their holiday in Benidorm in June last year.
Lisa Lloyd’s sweary videos sharing the funny and infuriating reality of life with her ‘SEN-betweeners’ have made her an online star. Lucy Denyer joins the chaos. Plus, what to know if you suspect your child is autistic.
Ask any mother about the first frantic days and weeks of their eldest child’s life, and chances are she will have spent considerable time worrying something is wrong. Drunk on sleeplessness, haywire on hormones, most of us will have convinced ourselves that our newborn’s head is a weird shape, or they scream more than is normal. No new parent has a clue - it’s a case of muddling through and working it out as you go.
Lisa Lloyd was no different. Her son, Fin, wouldn’t sleep; he wouldn’t smile; he screamed every time their car stopped at a traffic light. He wouldn’t be comforted by being held or rocked. The only thing that settled him was stripping off his clothes and lying him on the floor, or wiggling him on a cushion. It got so bad that Lloyd raised her concerns with doctors. She was told it was colic or silent reflux.
But Fin didn’t grow out of his issues - and Lloyd didn’t stop worrying, even though her son was hitting his milestones. He was crawling and talking - earlier, in fact, than other babies. He was obsessed with letters and numbers, and he could recite the alphabet aged one. But he hated being around other children - and friends and family. He would become fixated on certain toys but wouldn’t cuddle his mum. Lloyd knew her son was different but wanted answers. She found herself googling “high-maintenance children” (she says she couldn’t quite bring herself to search for “babies acting like arseholes”).
“The more I searched, the more I kept coming back to the same result: autism. But how could it be autism? Autism wasn’t supposed to be like this - he speaks, he makes eye contact and he can’t count how many matchsticks I just threw on the floor. He’s not Rain Man.”
In fact, Fin is autistic. And so is his younger sister, Poppy, although her autism manifests itself differently. “Poppy was actually worse than Fin was as a baby. I felt like someone was taking the piss out of me.”
Now Lloyd, 40, has written a book, Raising the SEN-Betweeners, which outlines in gory detail what it’s like bringing up two differently wired children: “SEN [special educational needs]-betweeners” whose neurodivergence is too severe for them to fit easily into mainstream school but not necessarily severe enough for special school.
Lloyd, who lives near Maidstone in Kent, has become a trusted and influential voice for parents like her. For 10 years she has been sharing her experiences of raising autistic children on Instagram, where her account, @asd_with_a_g_and_t, has more than 100,000 followers. She initially self-published the book in October 2024 - only to see it rocket to the top of the Amazon charts, triggering a bidding war eventually won by Penguin.
She wrote it for all the parents out there who are, as she was, “completely f***ing lost” trying to help their functioning autistic children - the ones who may fall through the cracks, who mask so effectively that their parents might not be sure they’re wired differently, but who struggle to fit in.
Like her children. Fin, 11, “carries the weight of the world on his shoulders”, a strict rule follower who would “have a go at teenagers if he saw them drop litter”, struggles with sensory overload and desperately tries to mask his anxiety. Poppy, 7, is a blonde wild child obsessed with SpongeBob SquarePants, who also has what her parents believe is pathological demand avoidance (PDA) - behaviours that involve an extreme need to avoid everyday demands, and are part of autism spectrum disorder (ASD) - and “to be honest, doesn’t give a shit”, Lloyd says. “She’s in her own world and she really couldn’t care less what people think.”
Parenting them has seen Lloyd go from postnatal depression to acceptance of her children’s differences, to a campaigner for their rights. Throughout it all she has been fighting - for diagnoses; for an official educational, health and care plan for Fin and Poppy; for the rights of other kids, via SEND Reform England, the campaign group she co-founded to ensure all children with SEN have access to education that meets their needs. Because “the race is not set equally. Everybody else is carrying a rucksack but my child’s got rocks in theirs. Them knowing that, and other people knowing that, changes the whole game because it’s suddenly not a fair race any more. And actually, the fact they completed it is amazing in itself. It doesn’t even matter if they come last.”
Lloyd is warm, frank and funny - like her book, which covers everything from tantrums to mealtimes to surviving the school holidays.
Any parent will relate to her and her husband Terry’s ups and downs, and many of her stories. Rows about sibling arguments - one sitting too close to the other; one child having more crisps in a packet than the other; one sibling humming too loudly/quietly/annoyingly - make me cry-laugh with recognition. Lloyd’s recollection of taking Fin to a baby music group almost gives me traumatic flashbacks. “Why were all the other kids happy? Mine was acting like I had strapped him into some kind of bloody torture device when in fact we were just singing Old MacDonald Had a Farm.”
Her children are, by turn, arseholes, knobs, cock-blockers and f***ers (her words) - just like mine can be. But, I suggest, having autistic children sounds like the worst parts of parenting toddlers - the rages, meltdowns and unreasonable behaviour - but all the time.
“It’s very much like that a lot of the time - you do feel stuck where they were as toddlers,” she says. “And of course when they’re toddlers people find that behaviour sweet and funny, but when you’ve got your giant 11-year-old doing those kinds of things people are more judgmental.”
Much of parenting autistic children is about letting go of caring what other people think, she says. “You’ve got to try and move into their world rather than trying to force them into this world.” That is one of the toughest things, because “you’ve got to change your whole lifestyle”.
Lloyd long ago left her job working for a company that signed people up to do NVQs in the workplace, which involved driving around all over the place; Terry took over her job when he was made redundant before she had Fin. Their house “is filled with so many random things I barely notice any more” - yoga balls, a spinning chair, slime playdough - plus “random twigs and stones Poppy has found outside, like a squirrel hoarding its nuts”, she says. “Most of the time I really feel like the old lady in A Squash and a Squeeze.”
Meals involve “safe” foods: nuggets; waffles; some dry cereals (“Cheerios, mostly”); crisps; Yorkshire puddings; and surprisingly, kiwi fruit.
And holidays no longer mean getting on a plane to somewhere exotic. Fin and Poppy struggle with change, so it’s the Isle of Wight or staying at home and getting up early to take advantage of any SEN sessions at swimming pools or theme parks, or heading to the park when it’s pouring with rain because there won’t be any other people there. Christmas Day always involves a meltdown. Birthdays can be a shocker - sensory overload central - and dentist and hair appointments are beyond dreadful.
Lloyd is clear-sighted on the subject of benefits - neither martyr-like nor over-earnest, no mean feat. She points out that if you can’t book your child into breakfast or after-school clubs because the school doesn’t have the resources to deal with kids with extra needs - see also: holiday clubs - how are you supposed to hold down a job, let alone pay for all the extra costs that come with raising disabled children, such as larger nappies, seam-free clothing, extra-large buggies, white noise machines … The list goes on and on.
The book deal, she says, has been “literally life-changing”: the family is planning to move to a larger, three-bedroom house so the children don’t have to share a room. “I’ve come off all benefits and everything,” she says, half proud, half bashful.
Lloyd is incredibly easy to talk to and clearly loves her kids to bits, autism and all. “It makes them who they are. There’s never a dull moment and that’s the thing I love.” Her Instagram videos are brilliant; she’s a natural communicator. So it’s a curveball when, three days after we speak, Lloyd reveals on Instagram that she, too, is autistic. She’d always wondered if her own brain was wired differently, and kept getting messages from autistic followers asking if she was autistic too. She requested an assessment.
“Poor Terry - after I got my diagnosis he said, ‘Christ, I’m now living with three autistic people,’ ” Lloyd says, laughing, when I ring to ask how she’s feeling about it all. But, she adds, “it was a huge relief. To know that maybe I was never the problem or the weird one, it’s just that I’m wired differently. It was quite eye-opening how similar I am to the children.”
What difference has it made? “I’m 40 - I can’t really change my behaviour. But it has helped to understand myself more, to be kinder to myself.” As for her relationship with her children, “I struggled with motherhood in the beginning. Maybe if I’d known I was autistic too that would have helped.”
A couple of days later she posts a video of herself lip-syncing to Taylor Swift’s Anti-Hero. “It’s me, hi, I’m the problem, it’s me,” she sings, before cheers-ing the camera with a cuppa and a grin. Lisa Lloyd isn’t giving up the fight yet.
Raising the SEN-Betweeners: An Honest Guide to Parenting the Kids Who Fall Between the Gaps by Lisa Lloyd (Vermilion) is published in New Zealand on March 20.
Written by: Lucy Denyer
© The Times of London
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