When Nichola Lefroy held her second son Tommy for the first time, two things ran through her mind – one was a very powerful sense of connection, and the second was a premonition that she would outlive him.
“It was very clear,” she says, her normally composed face giving way to the memory.
Nichola, 38, is a trained scientist used to solving problems with hard data and a pragmatic approach rather than a sixth sense. She pursued a career in public health and corporate project management before leaving the workforce to focus on her growing brood of boys – first-born Jack, Tommy and youngest Max – just as Tommy, then a bright, animated, connected toddler, started to struggle with some of his milestones.
Nichola and her husband Sam spent nearly 18 months working with specialists trying to understand and address Tommy’s speech delay and withdrawn behaviour before he was diagnosed with Asperger’s Syndrome, the mildest form of Autism, at the age of five.
By then, the diagnosis came as a strange sort of relief.
“I was shocked as well as being not surprised,” Nichola says. “At least we knew what we were dealing with.”
Autism now affects one in 160 Australian births, according to official statistics from the Australian Advisory Board on Autism Spectrum Disorders. When Tommy was diagnosed, his symptoms were considered mild; but in subsequent months, after battles with whooping cough and the flu, he regressed into a terrified, fragile little boy who couldn’t get out of bed, let alone leave the house – not even to go into his own backyard. His thinking became tunnelled, monochromatic, unable to cope with sensory experiences as fleeting as a breeze crossing his face. Nichola was convinced that the deterioration in his physical health was having a dramatic impact on his development.
“The doctors said it was because of the Asperger’s, but all we could think was, ‘No, our boy is in there somewhere, we’ve seen him, but now we’ve lost him, and we’re going to have to go in after him and bring him back.’
“That’s when I remembered the premonition, and that’s what I hang onto now – that we lost him, but just for a little while.”
These days, Nichola and Sam are part of a small but growing group of Australian parents using the home-based ‘Son-Rise’ relationship learning program from the Autism Treatment Center of America. The 30-year-old program was the first to suggest – and prove – that autistic boys and girls had the potential to overcome their challenges and develop meaningful relationships with people. Its philosophy has always been based on the concept – now accepted wholeheartedly by mainstream medicine – that the brain is plastic, and open to change and development.
Son-Rise teaches parents about the ‘continuum of interaction’ – from completely exclusive to completely interactive – and techniques to use at every stage that encourage their child to be more socially interactive and see the benefits of connecting with others, while also respecting their need to be in their own world whenever they want to be. For instance, parents are taught:
- When their child is completely exclusive (zoning out, playing by themselves or being very controlling) to love and accept them by doing something similar nearby, and giving control to them entirely
- When they see that their child is showing some signs of interest in them (such as looking at them, or asking them for something, or pointing and making a sound) to celebrate and build on that by participating in their child’s game, contributing their own ideas and responding positively and playfully to every interaction
- Only when their child is completely interactive should they try to develop their flexibility and social skills by making requests or initiating new games.
All of this takes place in a specially designed playroom in the home. Nichola says it can be “a big leap for people to take ownership of their child’s development,” but after months of consultations and research, “Son-Rise was the first approach that made sense to us, that was all about positivity and reward and acceptance, and that gave our boy real hope for the future.”
Nichola and Sam travelled to the U.S. in mid-2008 to be trained in the Son-Rise technique, and started the program on their return with the help of some dedicated volunteers.
After a month in his special playroom, Tommy could face leaving the house to join Nichola on the afternoon school pick-up run. Another four months later on Christmas Eve 2008, he ventured into his backyard on his own volition to play cricket with his dad and brothers.
“I will never forget that moment,” says Nichola. “We were cheering and crying on the inside. It was a big milestone.”
After only a few months in such a nurturing environment, where so many of the stresses of everyday life had been removed, Tommy’s body was starting to heal, and he was regaining his love of connecting with the people in his life.
A holistic approach
Tommy’s Son-Rise program was supplemented with some simple neuro-developmental techniques from the Seattle-based HANDLE Institute. HANDLE stands for Holistic Approach to Neuro-Development and Learning Efficiency; the institute aims to help people address neurological challenges gently but effectively with an individualised program of organised movement activities. For Tommy, this included exercises like sucking drinks through a crazy straw every day to train his eyes to track together, which helped make eye contact a much less uncomfortable experience.
Nichola also investigated Tommy’s physical health and, after a series of tests, he was diagnosed with Chronic Fatigue Syndrome and Leaky Gut Syndrome. His body was riddled with toxins, and his brain simply wasn’t getting the nutrition it needed. The link between his physical health and his development was clear.
On the advice of a holistic doctor (a GP who integrates traditional and complementary medicine to treat the body and brain as a whole, rather than just the pain or the disease), Nichola put Tommy on a specialised diet – cutting out gluten, casein, soy, sugar, preservatives, colourings and flavour enhancers – and a comprehensive nutritional supplementation plan to give him the best chance of restoring his strength.
Now, two years later, Tommy’s black-and-white world has shades of grey and even a colour or two – and Nichola says her son is coming back to her.
“He is a completely different boy,” she says, “and we are quite different as parents too.”
“This has brought huge benefits to the relationship we have with all of our kids, the way we encourage them to be individuals with their own thoughts and opinions, the way we listen to them, the way we look after their physical health, the fun we have with them.
“We’ve got this opportunity to re-write our experience of their childhoods, and I am so grateful for that.”
Tommy is now interactive in the playroom most of the time, but it may be another couple of years before he’s ready to rejoin mainstream schooling.
“I’m trying not to get hung up on when that will be,” Nichola says.
“His reading and numbers are strong so I’m not concerned that he’s falling too far behind academically. I have moments when I think I would love him to be with his peer group, but he’s just not ready socially.
“Right now, the playroom is so much better for him.”
Eventually, she hopes to find a school for Tommy that has the right combination of pastoral care and academic rigour – and to turn some of her attention to the needs of the broader Autism community. She’d like to see Son-Rise training programs more broadly available in Australia, and to build on her scientific background with a Masters of Wellness so she can help other families take control of their health and wellbeing.
For now, Tommy’s playroom is a more-than-full-time commitment. But whenever her energy flags, she remembers the importance of early intervention – and that premonition.
“It’s always there in the back of my mind, and part of the reason for thinking I’ve got to give it everything I’ve got.
“I don’t want to have regretted any minute.”
AUTISM: HELP AND HOPE
It’s important to remember that every child with Autism is different, and every child experiences the condition in very different ways.
These are the techniques that are working for Tommy and some others like him:
- Relationship development – The Autism Treatment Center of America runs a full schedule of training programs in the Son-Rise technique in the U.S. and the U.K. throughout the year, and a limited (but growing) schedule in Australia: www.autismtreatmentcenter.org
- Biochemical and nutritional treatment – Find a holistic doctor who specialises in Autism at www.acnem.org or www.mindd.org
- Neuro-developmental exercises – The HANDLE Institute is based in the U.S. but has practitioners in Australia – www.handle.org
Find out more about Nichola and Tommy at www.aliveandwell.co
