Our Shape-Shifting Family
“The Jubilee line is my sibling who I love spending my weekend time with. Independently, of course. Not with you Matty, those are father and son adventures, like in days gone by. But if, like on February 25th at 1104am at London Bridge, you and Tabi (my other sibling – who I do love, please don’t be concerned!!) shall we say, ‘cross my path’, I’ll allow you to see the ‘behind-the-scenes’ life of Isaac. That was acceptable – I enjoyed the Pret croissant you purchased for me.”
Tabi wasn’t too nonplussed at this post dinner conversation chopper; peculiar but predictable as it was to her older brother. At a push, she proclaims a love of him too. And, anyway, she was adrift in an adoration of her own sibling-to-be creation.
I pumped my fist then filled the dishwasher. Sure, there’s a guilt with this contentment that my children are disconnected atoms floating around. Sharing a space and little else. But that they therefore rarely collide means a calm offsets any self-flagellation. There exists a formal tolerance between them with soundbites of politeness. She gets her brother – although the adapting can get to her. They are developing family-dynamic coping mechanisms oiled by Eliza’s ingenious parenting. Never mind providing a Midas touch, she’s performing miracles.
This Jubilee line ode was actually an upbeat epilogue by Isaac, after a tome’s worth of caterwauling spread over many weeks. His weeps about his ‘neurodiverse brain’ and need for ‘my friends and FOURTEEN first cousins to socialise and answer calls and be specific’ with him, having settled momentarily. The afterglow of some diarised events was perhaps grounding him. Such as my Australia-dwelling sister’s regular adherence to a ‘facetime’ call plan, twice a week, same time – questions and laughs on repeat, broadly-structured content. She delivers, he’s delighted.
These hiatuses from living-anxiety (the loosest of phrases that thinly attempts to describe Isaac’s world and how he desperately needs to control it) can be an hour, a few days, or maybe the odd week. They’re getting more regular now though. Happily. More of which, later. They never lack Isaac’s intensity (little does), but they’re more breathless-excitable than so desperate he can barely breathe.
It was also, around this time, that Isaac’s autism-whispering teacher reframed his weekend sorrow at not seeing friends. The plaintive truth being that his small class and tight knit social group mean Saturdays and Sundays can be spent in a friendship wilderness. The single figure peer group tips in favour of ‘ton-v-none’ on the scales of positivity to his development. Focus from teachers, peer group learning, expertise that’s applied practically one on one. Weekdays, are broadly wonderful.
But whether due to being semi-independent, or exhausted by school, weekends are not natural hang-out times for his miniature crew of mates. So, the diary can be blank, and his always-on social impulse, unsatiated. (Sociability and Isaac – if ever there’s a smasher of the loner autistic stereotype, there it is, right there.)
Isaac’s teacher’s reframing was inspiration gold, in terms of a penny drop effect – that friends are for school days, and the tube his weekend activity. The cousins too can be slotted in on the odd Saturday or Sunday, helping dislodge his need for radical regularity. Busy but wonderful, they carve hours, virtual and real, to mentor and buddy up, laugh and learn, display camaraderie. Some feel they’re absorbing his difference in real time, as if doing fieldwork for a qualification. One, Max, literally. Whose autism thesis compounded autism research with a deeply personal account of Isaac. Tears of gratitude are shed.
Still.
So many of Isaac’s demands will always leave me dumbfounded, ill-equipped, feeling sorry for him and myself. Like his continual, “when is a friend a friend? Is it how often you see them? At what point – exactly – does an acquaintance become a friend. Please answer simply, you know me, I need the facts.”
Wanting to quantify the unquantifiable. Understandably so. Human interaction can have so many hurdles. Which I’m aware could pepper Isaac’s pathway into adulthood and beyond. As David Nicholls so neatly surmises in ‘You are here’, “irony, hints and double meanings” can crush relationships before they get started. For personalities of all persuasions, shapes and sizes.
There’s also Isaac’s, “I need confidence interacting with females,” which I imagine will be a lifelong project. The PHD that never reaches completion. But he has such integrity and great intentions; I know no-one as honest and honourable than Isaac.
Then there’s that intensity he brings. That need for domination. That transcends everything. No matter his mood, no matter whether it’s a hiatus from the tough gig of neurodivergent living in a neurotypical world. I hate that his life has moments of being leaden and lonely.
Even at home. Maybe because he is at home. When he seeks socialising so much. His temperament and emotions racing and slowing. Who can he see, when can he see them, why can’t he see them. Why someone hasn’t made an agreed FaceTime arrangement, is met with the gravity of a Judge reprimanding someone’s failure to turn up in court. Fluidity and flexibility of typical folk can come crashing up against the rigidity and fixation of Isaac. Spontaneity is the enemy.
As a result, a sense of exhaustion can hang in the family home air, at times overbearingly cloying like the thermostat is stuck on high. Isaac the most done in and spun out by a whirring, buzzing brain. Heartbreakingly he often appears to want to be the odd one out, huffing as if it’s him forced to sit out a parlour game. However hard we try to invite him in.
Isaac’s articulation of his own mind, his ‘owned’ difference, cuts through and echoes around the house. It can feel as if he has wired himself up to an omnipresent, always-on Alexa, involuntarily informing us what autism is, how he’s feeling, what his plans are, or – worse – if they don’t exist.
“You know what I’m like Matty. I have to say everything I feel. I don’t shorten things like neurotypical people do.”
That’s for sure. Editing isn’t Isaac’s strong point. His mind is like the hard drive of all the ‘rushes’ from months of shooting a feature film – that are immediately and indiscriminately broadcast. Non-linear, uncut, raw and relentless. We decode, declutter, and then decide which to take on the chin, which to take to heart, or which to act on.
Because, by definition, he inevitably becomes the dealer in hard facts, nothing omitted to soften the blow if we’re feeling sensitive – zilch massaging of the truth then:
“I won’t want to hug you after your school trip, Tabi. Please don’t assume I will. But I will try hard. And, if Cousin Toby’s here, I want to be alone with him, without you interfering. OK? Yes? Yes?”
Tabi’s role as a sister and daughter comes with a rollercoaster flavour. She didn’t sign up for this ride. It’s dizzying. Being sidelined shouldn’t be an option. Withdrawing could become her weapon of choice, and it terrifies me. However, we’re all tyros when it comes to a family of four bent out of typical shape.
And how to organise this offspring ongoing scenario doesn’t really have its page on the rolodex of parental hints and tips. Short of age gap and squabbling generalisations, at close quarters there’s not a huge amount of familial and friendship intel to lean into.
It’s been tempting to get her to purely celebrate her brother for his difference and brilliance. But it shouldn’t be the blind faith of a glory hunting football supporter. There really are a mass of sensitivities at play here.
Tabi has an effortless emotional intelligence and read of social situations. She appears to comprehend the intricacies of friendships and immerses herself in improvised ‘Gen-Alpha’ chit-chat that I rightly get wrong. Change isn’t a challenge for her. Nor noise.
A Taylor Swift-loving, mini fashionista, funny, morning-hating, picky, hopper between resilience and wobbliness. Letting her swim in the sea of parties and friends and ‘the mainstream’, the universe has been established with her neurotypical-ness more in mind that Isaac’s autism.
Down the road lay traps and potholes for her I’m sure – pecking order social situations, the volatility of her ever-expanding world. However, wide open lines of communication curated by Eliza are, and will be, the lifeblood of her growth as a person.
Like the politician dodging a crystal-clear question, I can be tempted to avoid the awkward issue of autism’s impact on family life. But that’s a dereliction of dad-duty.
Because we all know there is one. Like a rooky waiter clearing the table of a rowdy bunch, I’ve not been too adept balance wise to keep family life from toppling over. Dominating and diminishing roles can be a default that’s very difficult to avoid.
We all know it. Isaac perhaps the most. As seemingly small an issue as his stimming (self-stimulating behaviour) can be a spanner in the family works. These being his train announcements which act as a release for frustration, balm for agitation or expeller of excitement – all critical for him. For Tabitha they may irritate as they interrupt her, or – and we must address – embarrass her when a friend is over. Natural behaviours, that only explanation, compassion and empathy can address head on.
The research is both reassuring and a little alarming:
Journalist, Emily Laber-Warren, cites a study on the theme of families and autism in a piece for The Transmitter. She reports that Alexandra Leedham, a clinical psychologist at the Chesterfield Royal Hospital, undertook research on how autism shapes sibling relationships, observing that “some autistic children require so much attention that their siblings get lost in the shuffle.”
She continues, that “their needs may be overlooked, or have to come a bit second,” and “having an autistic brother or sister can pose challenges, but it can also make children patient, empathetic and resilient.”
This has always chimed for perhaps years now, and I’ve always quivered. Aware but inert. No real strategy, stuttering around, wishing the sibling stickiness away, counting my blessings when things are buoyant.
Meanwhile Eliza had a plan last year. A preposterous one. Plotted over many months. I was vaguely aware, but I became a ‘make my excuses and leave’ coward kind of a guy, whenever it was proposed. Like the dinosaur CEO of an analogue business who won’t pivot.
Because how could she spin something that’s always had a wholesale negative response in Isaac into a wholly positive proposal for all the family. Impossible. Not a chance. The end.
“Sadie is the heart of our family,” Tabi recently said to me.
She’s “the little one,” parrots Isaac happily and daily as he wills this four-legged imposter into our lives to lick his freshly shaved head. Before showing her his room, filming her scampering and antics for his reels, then politely inviting Tabitha to take her.
The dog in his life as enhancer and deflector. And, yes, a sibling. Maybe not like the Jubilee line, (“it’s the GOAT of all tube lines, those sounds, that 1996 stock… I can’t wait to show my mentor it.”). But, seemingly, as a sublime shifter of focus more fairly around the family. An intermediary between him and Tabitha. And, yes, an-imagined and now delivered sibling for her.
Much of 2024 is a fever dream.
If Tabitha loved dogs to the moon and back, Isaac hated them more. His fully-fledged phobia meant barks would be recalled with pinpoint accuracy date and location-wise. Emotional memories triggered. Houses were blacklisted by him if a four-legged enemy lived there, patrolling menacingly in his unflinching eyes and imagination.
As such, with anything canine I’ve been full ‘ostrich effect’ for years. Accepting Isaac’s distress of dogs dutifully and unquestioning. Whilst avoiding Tabi’s puppy dog pleading eyes to get one “like everyone else!”.
But at some point, Eliza’s uncanny intuition saw a window whilst I only ever saw an open and shut case. I fully blocked out the simmering plans.
It has had the effect of the most mind-blowing magic trick. Months on, even knowing how it worked, listening to the logic, it remains an illusion. And one that continues to be:
A dog, running round our house, being loved by my children, being walked by them together, being a bit of a glue. I hesitate to say it’s saved my life. But “changed for the better” is the weakest of understatements. The family challenges remain of course. Isaac’s challenges likewise. The autism sibling paradigm has not been solved. But. A new dimension to family life exists, giving it a fresh dynamic and healthy shape. Weeks and months on, it continues to take my breath away.
Having authored and pondered many a suspect slogan in my profession, imploring brands to ‘achieve impossibles’ and ‘go beyonds’, Eliza has slam dunked one with brand Isaac. She really did believe the unbelievable – and made it happen.
As soon as I suggested taking Tabi to see my family in Australia, there was a keenness in Eliza to make it happen. Ferreting us off like stowaway 19th century criminals, with promises of a new world, it was a vital part of a bigger plan than a father and daughter adventure (which was a once-in-a-lifetime experience though).
It was the missing piece of her triptych formula:
Time alone with Isaac to meet the dog. Just him and his mum. One on one – plus what I could only envisage as the scariest of scary ones. The dog. The cavapoo called Sadie. 8 weeks old, picked by Tabi, programmed to get processed in Isaac’s complex mind by Eliza’s wizardry and coding. That he took to being in his presence. A miracle.
The other critical parts of the formula were firstly that his school very much in cahoots. Enabling the gentlest introduction to dogs in a physical setting where Isaac would be residing. Always with ample warning and dates.
If ‘flooding’ is the way phobias are treated, this drip-drip method deserves writing-up and receiving high-accolade-psych approval.
One of Isaac’s teacher’s French Bull Terrier, ever so calm, sat and received a stroke on a specific day, every other week, when in the classroom. Another teacher’s Cavapoo occasionally came in, with much notice, and Isaac said hello. Receiving congratulations and practical commendation in return.
That second piece of the formula was Eliza starting the dialogue some months earlier. Talking about a date. Showing Isaac pictures. The reverse of a prisoner scratching off the days to release on a dank cell wall, he somehow contained himself as the date approached. Strengthening his resolve, perhaps without him even realising, was the presence of the school dogs, and crucially, that missing piece referred to earlier: knowing the absence of Dad and sister, coochy-cooing over it.
Down under, witnessing him stroking a dog through a screen – playing with it! – felt more fantasy film than facetime. My startled eyes, Tabi’s longing ones – her missing the dog’s nursery slope days more than compensated for by a terrific holiday, Aussie family love, and a mature comprehension of Isaac’s fear – and need for space.
Again, a sibling having to shipshape around a more chaotic other, but, somehow, the spoils were transparently worth it.
And now. Every morning, I rub my astonished eyes – before tickling her little tum-tum. Both kids join in their irritation at their soppy dad. But share a love for this life saving release valve. Who’s so, so adorable.
Sadie, the (not too often) barking Cavapoo.
Everything will still hold about Isaac, his autism, our family, the tasks-at-hand always changing. But the vice-like grip his needs can have, and his unusual, but ultimately life improving, role in Tabi’s world, have all eased a little.
By this dog. This Sadie. Who’s bonded our family like no other.
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