Edwina Hall, Kairos Catholic Journal,
Tuesday 29 October 2013
ONE of the first things that strikes you when meeting Judy Brewer Fischer is her attitude to the vicissitudes of life. The wife of former deputy prime minister of Australia and ambassador to the Holy See Tim Fischer AC, mother to two teenage sons, farm manager of ‘Grossotto’ Poll Herefords and autism advocate chooses to meet challenges with positivity and gratitude.
‘I can’t describe in words how much my life has been enriched by living with people that think differently,’ she said. ‘We could have had the normal experience of two kids, work and the ordinary path. But I think it would have been quite bland, really.’
Tim and the Fischers’ son Harrison, 19, are both on the autism spectrum. Harrison was diagnosed with autism—now known as autism spectrum disorder (ASD)—at age three. At that time, little was known about the disability.
‘Harrison was our eldest child and neither Tim nor I had had a lot of experience with babies,’ Judy said. ‘From the time we brought Harrison home he was very unsettled. He was constantly sick, he didn’t like being touched and he didn’t reach any of his milestones in terms of crawling and walking.
‘At two years old Harrison didn’t have any speech but we didn’t know what autism was until someone said, “have you heard of autism?” It was an enormous relief.
‘All that stress about why we were such terrible parents. No one would have our child in their house because his behaviour was shocking in every way.’
Judy, who is now Chair of the Living with Autism Cooperative Research Centre (Autism CRC)—the world’s first national, cooperative research effort focused on autism from diagnosis to education to adult life—and 2013 recipient of the Asia Pacific Autism Award, often shares her experience at conferences.
‘Doctors will tell me they hate giving that diagnosis [of autism] unless they are 100 per cent sure. I say, “Give them the diagnosis.” They’ll be glad if it’s not right, but at least have a think about it because for us that was the turning point.’
After Harrison’s diagnosis the Fischers moved for two years from their farming property in Boree Creek in the Riverina of NSW to Canberra in order to have access to an early intervention teacher and eventually an autism kindergarten, where they began to see ‘a huge jump forward’ in Harrison’s progress.
They advocated for an autism-specific class to be opened at one of the schools in Canberra and enrolled Harrison. However, a public meeting was held for parents of children without autism and the initiative was voted down.
‘We were just absolutely devastated,’ Judy said. ‘And I remember thinking at the time that those parents just don’t understand what they are doing. None of the autism parent group was allowed to speak to this public meeting and so the myths about autism took over. People got up and said, “they are violent and aggressive”, “they’ll run away”, “they’ll burn the school down”.’
The Fischers returned home to Judy’s family farm at Mudgegonga, north east Victoria.
‘It was a really terrible time in my life; I suffered from depression that year,’ Judy said. ‘Tim was still in Parliament and clearly that was a factor when he made the decision to get out. What was incredible was that one year later that school did start. It was one year too late for us, but it became one of the most successful autism classes in Australia.
Fortunately, Harrison began school at Mudgegonga Primary, a one-teacher school.
‘I desperately went down one night and knocked on her [the teacher’s] door and said, “I can’t find a school for my child with autism,” and she said, “our school is for everyone”, and he was so happy there.’
In Judy’s words ASD ‘is no one thing’. ‘It’s a spectrum of disorders and even disorder is a funny word because it can in fact not be a disorder or it can be quite a considerable disability.
‘There are four things usually affected: socialisation, communication, behaviour and sensory [responses]. Somewhere in that mix is Asperger’s syndrome.’
She said that one in 88 children born in Australia today is given an ASD label, but society operates on the principle of the majority or ‘neuro-typical’ (NTs) way of living and so society has expectations of the way people should manage external environments. As a result, ‘people with ASD struggle with a lot of things that NTs take for granted’.
Generalisations about those with ASD are problematic.
‘When you meet one person with autism you’ve only met one person with autism; there’s nothing generic about how autism is expressed,’ Judy said.
‘Take Tim for instance. He clearly has some very autistic characteristics and he admits that very readily, but he doesn’t have a disability and he has been very successful in life. In fact, his autism strengths are what made him successful because of his ability to focus on particular interests and to work at a ridiculous pace.’
Judy explained that the critical topic in the ASD community at the moment is genetic research. This may lead to more accurate diagnosis and more targeted treatments in the next few years, which will be helpful but may also have ‘scary’ implications.
‘When we think about people in society who are able to think differently to drive change—all our creative people who think outside the square, our artists, our musicians—the thought that we could imagine a world where we didn’t want those people is the most horrific thought,’ she said.
In Australia, ASD is now the biggest disability grouping. Judy says that is why it has suddenly become such a huge policy issue, particularly with the establishment of the national disability insurance scheme (NDIS), through which every person on the spectrum will need different and individual support.
In order for children with ASD to have the best chance in life, Judy said early diagnosis was crucial and intensive early intervention—as many one-on-one hours as is possible—gave children the best chance of learning skills to manage in a mainstream environment.
Once children are at schooling age, the challenge is to find the right school environment, since the transition to a structured classroom can be incredibly difficult.
‘For Harrison something as simple as wearing shoes is a big issue,’ she said. ‘We ended up having to say, “look, he can learn without shoes.” It seemed stupid that he had to wear shoes to fit into a classroom.’
Beyond school, Judy said, it can be ‘a bit of a wasteland’. Adult services are minimal, despite people with autism being an adult for far longer than they are a child.
‘That’s probably the area investment needs to take place in, because we know the employment opportunities of autistic people are the lowest of any disability group yet their potential is probably higher,’ she said.
Judy said Harrison found socialising very difficult and was yet to find his vocational path, though politics is one of his many interests.
‘Harrison has a very individual view of politics that doesn’t represent his mother or his father,’ she said. ‘He is very social-justice driven, and of course Julia Gillard is his hero for bringing in the NDIS.’
Judy said respite care was another critical resource for families. However, even more critical was housing and independent options for adults who need extra care.
‘We won’t live forever and I don’t have any real answers apart from my faith, thank God, which tells me that we are going to solve this problem,’ she said.
Judy has this advice to offer parents of children with ASD: ‘First, the whole experience improves as your child grows. There are some hard times and some ages are more difficult, but look forward to having a beautiful adult in your family who will continue to challenge you to think differently and enlarge your life.’
She said it was important to keep looking for services.
‘I’ve banged on so many closed doors to get services for Harrison, and most parents grow through this experience because they have fought so hard; and that’s not a bad thing, realising every one of us has inside us a core of steel.’
Judy said parents’ feelings of ‘anger, grief and denial’ often followed a diagnosis.
‘But this isn’t grieving over the child you thought you had that you lost, because you never had that child. The child you’ve got is beautiful and has particular skills and the quicker you get to accepting that, that it’s about loving the child you have, who you will go to the ends of the earth to protect, the quicker you’ll get to acceptance and the better it gets.
‘I don’t want to sugar-coat it in the sense that there was a long period where I found it very hard being home all day with the care needs that I have. So much of how we live life is about mindset. For all the talk about being home with Harrison, I have had an incredibly interesting life with Tim and all that he does and I am very grateful.’
Judy said her sons, Harrison and the Fischers’ younger son Dominic, 17 -‘two very different boys’- are ‘the joy of our lives’. Faith has played a crucial role in Judy’s journey.
‘My faith is my rock and I couldn’t live without it. The joy for me has been watching Harrison move from being a screaming kid who wouldn’t go to church to being a very spiritual person. His faith is also his rock, so that’s extraordinary. I don’t know how that happened but I am just so glad it did because it makes a big difference in your life if you have that anchor.
‘Faith is so central to how you live your life, to feel part of something bigger than yourself. I don’t have many answers about the big questions of the world, but I do have an enormous sense of being part of something bigger than just our everyday life. That means that at times in life when I’ve needed more strength I’ve been able, through prayer, to access that strength. It’s almost like a secret weapon sometimes and it’s a gift because without it I think you’d wonder why you are going through all of this.’
Judy said many people in society with ASD were misjudged ‘and they are usually very intelligent, incredibly warm people who can contribute enormously to society if they are given the opportunity’.
For Judy, it’s about perspective: ‘Loving someone with autism challenges your concept of what is normal, and it’s such a good thing to challenge what is normal because normal is not right, normal is just the majority.’
For details about living with ASD go to: www.autismcrc.com.au
Photo: (Above) Judy Brewer Fischer in Melbourne recently to speak on austism at the Festival of Ideas, hosted by the University of Melbourne, by Fiona Basile. (Below) Tim Fischer AC with his son Harrison, courtesy of Judy Brewer Fischer.