Ginny Jones & son Toby, 12
Ginny Jones and husband Glenn Pressnell’s son Toby was two and a half when he was diagnosed with autism. Also parents to Finn, nine, and Luke, five, the couple says having a son on the autism spectrum has brought them closer.
“It has made us quite a team, that’s for sure,” Jones says. “It’s by far the hardest thing I’ve ever had to deal with on a daily basis. It’s difficult and it’s a struggle but there are definitely positives.
“Toby experiences the world in a quite sensory way – he’s tuned in to what’s moving, what sounds he can hear. On a social level he’s not judgmental or focused on appearances or status. All that completely bypasses him … He’s also brutally honest, but actually that’s not so bad and it can be quite funny.
“He can take pleasure from such basic things and that’s absolutely the big thing that I think we can learn,” says Jones.
“He’s also got this amazing focus, attention to detail and won’t give up until he’s done, he just perseveres with things absolutely relentlessly. The challenge is to find ways of using those traits and channelling them into useful things.”
Jones believes now is a good time to have autism because of the advances in technology – iPads and laptops have helped a lot with the things the couple have been able to teach Toby.
“It’s also a good time in terms of being in an enlightened era – that really helps a lot, too, now that there’s an appreciation of diversity and [it’s not] so stigmatised,” says Jones.
“There’s a long way to go, but there’s this move for ‘person first’ language now and I think that’s a really good thing. We don’t say ‘autistic’ person; we talk about the ‘person with autism’. I think those things are really good – recognising their individuality before their disability.”
Neil Stuart “fell into autism” when the British former primary school teacher took on a class of six teenagers “with profound autism”, to cover for a teacher on three months’ sick leave due to stress. “The three months came and went and it’s now been 21 years,” Stuart says.
He helped set up the first unit in the UK for young children with Asperger’s Syndrome and, when he moved to New Zealand, he helped design the first purpose-built centre for children with autism in West Auckland.
His most recent project as Autism New Zealand education and training director is rolling out a new online coaching tool for parents of young children with autism, Way to Play, in conjunction with the Ministry of Social Development. The programme, which launches on April 1, is believed to be a world-first.
“We don’t need to encourage parents to play with their child; we need to show them how to play with their child,” he says. “Sometimes seeing things from someone with autism’s viewpoint leads to you taking away some of the bullsh*t that’s attached to everyday life … there’s an honesty there.” That honesty often leads to action and progress.
“I think autism’s often expressed as, ‘you can’t do this and you can’t do this’, and I think we need to change that. It’s about what people with autism can do. It’s not about being a genius, it’s about playing for the local soccer team. They can do that, they can go and join the local Scouts or Guides. They can go to university, they can be in a relationship with people and get married and they can have kids.
“I think all the time when we portray people with autism in a certain light, it’s saying, ‘you can’t do this’. I see the opposite.”
Vicki Gibbs & son Harry, 19
Former police officer Vicki Gibbs changed career after having children, but it was her third child, Harry, 19, who ultimately led her to become a clinical psychologist for Autism Spectrum Australia (Aspect). Though Harry had developmental problems from an early age, he wasn’t diagnosed as having autism until age 10, which meant he missed out on autism-specific schooling.
This experience inspired Gibbs to study psychology. In her current role, she is passionate about helping parents diagnose children as early as possible so they avoid some of the challenges she and Harry faced. Nine years on from Harry’s formal diagnosis, Gibbs has learned “acceptance”.
“You go from being a mad interventionist and ‘trying to make them better’ to appreciating the person they are when they are older,” Gibbs says. “It’s not something that comes overnight; it comes over years. When they are younger you are always judging them on what everybody else is doing and you’re caught up in that. As you mature and grow as a parent you get to a place where you think ‘well, he’s this way and it’s okay’.
“There’s nobody that couldn’t like him,” Gibbs says of Harry. “He hasn’t got a malicious bone in his body. He’s completely honest and very easy to be around. He has a great memory and while it might take him a while to learn concepts, once he knows something he’s got it. He’s more reliable [than his siblings] and they know it.”
Having a child with autism also helps you appreciate the small things, says Gibbs. Seeing Harry begin to initiate social contact with others gave her enormous pride.
“They also teach you to look at things differently. When you stand back and listen to them, often they are making complete sense, it’s just a different way of looking at something.”
Tom Tutton is passionate about the positives of autism and he’s not just talking about his role as positive behaviour support manager for Autism Spectrum Australia (Aspect).
Aspect’s campaign, “a different brilliant”, which was launched in November 2014, is helping to change people’s perceptions of autism by showing the positive attributes of the spectrum.
“They used to call them obsessions. Now we call them strong interests that reflect a love of one thing – an inside-out, back-to-front detailed knowledge of that thing, which used to be perceived as a problem but increasingly is being viewed as a strength,” says Tutton.
“What we want to promote is the value of letting people try to do things in a different way. We may develop something more efficient and avoid some of those issues with groupthink or people repeating the same way again and again.
“I think anything that really challenges people’s perceptions about what people in the spectrum can do – we are not just talking about Rain Man reading the phone book kind of clichéd stuff, we’re talking about everyday strengths … I think the onus is on us to change the way we look at people with autism and respect them and nurture them, rather than people with autism having to change what they do.
“The more we talk about strengths I feel like more people are switching on and seeing those sorts of things in their kids and students.”
Tutton views his job as a blessing. “I just fell in love with the work. I understand the principles behind creating behaviour change. I love working with the families directly and meeting the client themselves,” he says.
“I get the chance to hopefully achieve some good change in lots and lots of people’s lives.”