Autistic by proxy
30 Mar 2020
But it’s less well known that Natasha’s transition to vlogger was largely born of necessity. As mum to three Autistic Spectrum Disorder (ASD) sons, pressure was mounting on the home front - and a traditional career became untenable.
So she took to YouTube and made it work. Today, the Natasha Lee channel fits neatly around the lives of Michael, 22, James, 12, and George, 7.
For Autism Awareness Week, Natasha (Tash) talks about her boys, their very different personalities and whether ASD has progressed or regressed in a generation.
20 years ago - diagnosis tougher, facilities better“When Michael was young he was very obviously Autistic,” says Tash. “Being around people stressed him so he wanted to be alone. He’s super sound-sensitive, pre-diagnosis he was expelled from nursery for turning off the computers.”
In the early noughties, an ASD diagnosis fell to a panel representing different disciplines. During Michael’s assessment, the speech and language expert spotted a level of eye contact said to be inconsistent with the condition. Diagnosis denied.
“He glanced up and looked away,” says Tash. “That was the sole basis on which we were refused a diagnosis. Mike is probably the most stereotypically Autistic of all our boys, but even 20 years ago there was a lot of ignorance.”
From Michael’s experience then to James and George more recently, Tash and husband Ric have seen major strides in awareness. But for all that there’s speedier diagnosis, cuts to services in the austerity-era marked a significant step back.
The family spectrumToday, a flash of eye contact won’t make or break a diagnosis. The rebranding of Autism as Autistic Spectrum Disorder defines the condition not as a check-list of symptoms but a broad range of neurodiverse behaviours – behaviours that live in the North Wales home of Tash Lee.
Like most brothers, James, 12, and George, 7, share a handful of similarities. In this case, both are sensitive to sounds, textures and taste. Both can be shy, dislike eye-contact and crave familiar surroundings. But they’re still wildly different.
James, says Natasha, is social and affectionate and perhaps closest to the ASD stereotype of the genius. Educators have already labelled him as advanced, talented and even gifted.
Young George is different, he’s “a ball of energy” more comfortable outside and around people than his brothers. Unlike Michael and James (who hate dirt), Tash says George would be happiest “rolling around in mud, naked, with all his toys.”
Also unlike his brothers, George doesn’t stim - an abbreviation for the self-stimulating behaviours (think hand-flapping, pacing, nail-biting or fidgeting) Autistic people escape into when a situation is overwhelming.
“George’s diagnosis took a bit longer,” says Tash. “Early on, I just thought he was a bugger. Because I was getting older, I thought it was me struggling to keep up. But we had our I think we’ve got a third one here moment when he started pulling the heads off his Lego characters.”
Tash and Ric quickly realised that this was George’s way of avoiding eye contact. And a major signpost to ASD.
The battery drainWith no specialist options, Tash and Ric have struggled to find the right schools for their younger boys. Issues with a local primary forced the couple to look further afield.
Tash is very complimentary about George’s school - a mainstream state primary in a neighbouring district. There, George receives one-to-one care and gets involved in group-activities. Inspired by Tash’s home set-up, the school even installed a sensory chillout area, complete with low-level lighting, so George and fellow students can relax and recalibrate.
But as much as the school is understanding, the classroom will always be a draining environment for anyone with ASD - as LifeSearcher Robyn Murray recently explained.
So for everyone’s health and wellbeing, the family keeps to a precision routine. If the boys max out what Tash calls their social batteries, the consequence can be a social hangover - acting out for a period of hours, or even days.
“I normally do the school pick-up,” says Tash. “If Ric’s going to do it, we have to phone ahead so someone can brief the boys so there’s no surprises.
“When I pick them up, I have to wear the same clothes. I once wore a bright coat and George didn’t see me. And while the YouTube me always wears red lipstick, the boys would freak out if they saw it. To them, that’s not how mummy looks.”
Tash says that venturing out to events, parties or playdates is a similar script: no surprises.
“The kids have to have all the info – where, how long, who’ll be there, when we’re leaving and what to expect,” she says.
“But say we step out to leave and there’s a wind. That means George will get stressed, we’ll have to abort and I’ll call to apologise. I always offer to pay for our place but people don’t take you up on it. Some folks might think we’re rude, but those who understand the situation are really good about it.”
An Autistically normal familyTash describes life as Autistically normal. A routine of adjustments that keep life simple, calm and comfortable for James and George.
With home so central to the boys’ wellbeing, Tash and Ric have built an environment for maximum comfort. Appliances, lighting and sounds are all regulated to limit stimulation.
The family makes regular use of the garden … and keeps to a sacred weekly ritual.
“On Saturday, we all sit down together for movie day. With all the money we’ve saved (not going out), we bought a four-seater chesterfield sofa so all of us can snuggle under a blankey with chocolate and grab bags. Archaeology is our current film genre – we’re on The Mummy and Indiana Jones.”
Tash says she used to be spontaneous and social, but now those things don’t play. She describes a period of mourning that some parents of ASD kids go through for the adventures and experiences they’ll probably miss.
But life is calm and the boys are happy. She might be a social media star, but as Tash Lee fully admits she’s not that social.
“I’m Autistic by proxy,” she says.
Against the oddsAfter Michael’s eye contact setback at the assessment centre, Tash and Ric fought on. Eventually, young Michael received his diagnosis and became probably the last generation in the area to access non-private specialist education until his early teens.
To demonstrate the apocalyptic aura around ASD in the early noughties, Michael’s teachers stated that he’d never sit GSCEs and wouldn’t make it in the mainstream.
Yet Mike, the most stereotypically Autistic of Tash and Ric’s sons, has completely rebuffed those limited expectations. Not only did he manage, with assistance, in mainstream school, he left at 16 with six GCSEs and went onto college.
Today he’s 22, lives independently, and works his dream job, full time, at the local council. With Tash and Ric’s support, Mike’s literally living a dream all were told was impossible.
“Any time I meet professionals or teachers who remember Mike, they’re shocked to find out he has a job and a flat on his own,” says Tash.
“From then to now, I’ve noticed a much-needed shift in society. When Michael was young and had a public meltdown, we’d get abused and told to leave. But I’ve never had anything remotely like that with the younger boys.”
Still, for all the social progress, Tash says that flathunting with Michael reopened some old wounds. It was a stark reminder that awareness isn’t where it could be.
“Once the word Autistic was mentioned, certain landlords didn’t return calls and others rejected Mike outright,” says Tash. “The reality is that their ignorance blew the chance to have a dream tenant: Mike follows the rules, keeps to routines, is clean, pays his bills and isn’t into wild parties.”
Tash and Ric have never stopped fighting to help their three boys to reach for their full potential. They aren’t about to start now.
For the Lee family, positivity and compassion are key to progress and understanding what it really means to be Autistic. Tash mightn’t let on to her fans, but there’s a beautiful story behind the screen too.
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