Penguin Books Australia

Q&A with Anthony Macris, author of When Horse Became Saw, and his partner, Kathy.

Tell us what your book, When Horse Became Saw is about?
(Anthony) When my son Alex was 18 months old he underwent a severe autistic regression. He went from being a really happy, buoyant toddler to being a kid that couldn't speak properly any more, had difficulty hearing, was lost in his own world. Most frighteningly, he seemed to suffer a great deal around the age of 18 months-2 years old.

When Horse Became Saw is about the journey and finding out about autism, which is still largely a mysterious condition. It's also about finding the best help, which was a very difficult thing to do, and about my family's journey through the whole process of learning to deal with this new son that had come to us.

It seems amazing that your son Alex was such a beautiful, healthy child for so long, before he developed autism?
(Kathy) We didn't realise that either. I remember thinking when he was one, that's great, he's going really well, everything's fine. He'd developed into a lovely, calm child with quite a lot of language and then he lost it.

That must have been a big shock
(Kathy) It was very hard.
(Anthony) Generally speaking, there are two kinds of onset. The first is the one most people know about, where the child doesn't develop, has no eye contact, isn't talking. That can take a long time to identify. But the second group is often developing fantastically. In Alex's case, he was pretty advanced for his age, and then everything started to go wrong. It happened over a 3-6 month period - it was a really disturbing time to watch him go through that.

The diagnosis is a relief in that it gives you a name for what's happening, but accepting it is much tougher?
(Kathy) It takes a lot of years to accept that your child's changed and going to be irrevocably changed. But I think for us it was from about the age of 6 or 7 that we began to think, 'well this is the way it is.' The longer they are with autism then that's the child you have but when your child's been normal and then you're child's different . . .

(Anthony) It's going to be a lifelong process for me. At first I had this direct, probably very male way of tackling things. Like, 'OK, I know what I'm dealing with now and that's that.' But I've found it doesn't work like that at all - new challenges come up all the time.

In the book you say Alex was very distressed at the time he was regressing, so you think he knew what was happening to him?
(Kathy) Nothing made sense to him any more. I remember going to pick him up from childcare and they said he had been distressed and crying in the corner for most of the time and that was completely different to the Alex we knew. Maybe it was the noise, I don't know. Alex didn't know what people were saying to him any more. His brain wasn't processing things and I think for him it was just terror.

(Anthony) He spent a fair amount of time in that state and it was gruelling and heartbreaking to watch.

He lost his vocabulary didn't he, hence the title of the book, When Horse Became Saw?
(Anthony) Yes. I owe the title to Kathy. She was the one who came up with it. It refers to the way Alex's language started to transform and disintegrate.

(Kathy) I used to take Alex for a walk to the park and we'd go past a house that had a picture of a horse on the mailbox. And I'd point and say what is it? And he'd always say 'horse.' But this time he ran up and said 'saw!' I thought, 'oh, that's odd!' That was only in the beginning stages and 'cat' became 'tack' and things like that . . . that was the first inkling that something strange was going on.

Was writing the book, distressing?
(Anthony) It was the hardest book I've ever written, because I had to reconstruct what happened and live through that pain again. I very much wanted to write a book that would take the reader through a strong emotional experience of what it's like to be in our situation. And all the larger questions it raises about family, love, what it means to have a child and what it means when something goes terribly wrong.

Were you in agreement about the writing of the book?
(Kathy) Yes, but I didn't like re-reading and re-living things that we'd sort of put behind us in some ways. I found that really difficult, to read it again and then start crying again . . .

(Anthony) The role Kathy's taken on has been absolutely extraordinary. Time is something we don't have and Kathy barely had the time to read the manuscript - she had to read it in the most ridiculous snatches of time, when she was exhausted. When you have a kid who is at the severe end of the spectrum as we do, they are a 24 hour a day job. And often much of that job falls to the mother for whatever reason. 

Did you say you are working as well?
(Kathy) I did leave work to be with Alex and work with him full time on his early intervention program, but now I work at the school where Alex goes.

This is a new school in Sydney for children with autism?
(Kathy) Alex was taught at home until the age of 4 and a half. The school started in 2005. It was set up by a woman called Elizabeth Watson, whose background is in speech pathology and a form of behavioural therapy used to teach people with autism. There was also a group of parents of children with autism who asked her to come on board with the project.

(Anthony)They wanted their children to have ABA - applied behavioural analysis, which is the therapy Alex does. It's an international best practice therapy and they (the parents) wanted to bring it from the US to Australia, where it was in a very fledgling stage. Elizabeth has been an inspiration.

You gave up a lot from the beginning to stay at home and learn about the therapy and work with Alex - how hard was that?
(Kathy) The thing was he was very young and very vulnerable and I think for me I really didn't have a choice because he didn't have any options at that point.

You didn't experience any sense of loss?
(Kathy) There was one thing, I was teaching English as a second language part-time but I'd also kept up teaching dance. But when Alex underwent what I call the 'crash,' I had to say to my students 'I can't do this any more' and that was hard.

When Horse Became Saw is not only about autism, but about how you can be hurtling through life in one direction one moment and the next, everything changes?
A: (Anthony) One of the models for the book was Joan Didion's The Year of Magical Thinking. She writes (and I'm paraphrasing), 'life can change in an ordinary instant.' Suddenly you find yourself in a completely different universe, virtually overnight. And all your expectations of life have to change.

There's a loss there but it can also be exhilarating because you're being made to respond to things you never thought you'd have to respond to and with a depth and a seriousness that you never had to. Suddenly your mettle as a person is tested. I would never wish my child had autism but you have to find some good in the things that happen to you. You have to. I think it's developed us both as people a lot, unfortunately through tragic circumstances.

(Kathy) And I'd never been exposed to tragedy before this, but a lot of people have.
Like with the floods, you see people dealing with that scenario. People are dealing with tragedies every day.

Were there were times you felt you couldn't do it?
(Anthony) There were times when we both thought 'we can't do this.' I still feel it now. But you get up in the morning and you just haul yourself through it. Some days are better than others.

(Kathy) I think initially I just cried every night. I don't think I slept for a year, maybe two. From the shock and I think it's a mourning process as well, just dealing with the whole thing. Not knowing about autism is a scary thing as well. We'd never been exposed to it and probably had this Victorian idea of what autism is. You know, asylums . . . whereas it's very different to that. But it was really frightening.

That stage you describe in the book when Alex was barely sleeping two hours a night and insisted on sleeping in your arms, must have been torture?
(Kathy) I've aged so much (laughing)!

(Anthony) We both had the 'micro' sleep experiences, dropping off suddenly. We were so sleep deprived.

(Kathy) Alex has been sleeping a lot better in the last few years.

(Anthony) The sleep deprivation issue is really important because it's kind of invisible to others. You can go into work exhausted - people with kids think they know what that means - but there is a huge difference. I'm talking about an insidious form of torture that can go on for years. It can be absolutely debilitating for you as a family and for how you function at work. It's not like you're coming into work with your arm in a cast, and people can clearly see you're struggling. It's an invisible thing that people often don't understand. I would often get really frustrated that I would be toughing it out through day upon day of gruelling work schedules to raise money for the therapy and the outside world simply thinking 'oh well, that must be a bit difficult.' It wasn't a bit difficult, it was punishing.

In the book you don't go much into possible causes of autism. Is that because it is still very much a mystery?
(Anthony) There are scientists across the globe working on this at the moment. We may have an answer in 10, 15 years. We may never have an answer at all. The thinking at the moment is that it's neurobiological, possibly genetic in origin...we don't really know. The word that comes up with horrible regularity though is 'incurable.' I haven't seen that one vanish yet.

The other word that is often mentioned in relation to autism is vaccinations?
(Kathy) It's a difficult one. My father's a doctor so I had no concerns about having Alex vaccinated. In fact I thought it was something that I had to do. I didn't ever really think about it until Alex had his 18 month vaccinations and the following two weeks he went sort of ga-ga. I was a bit concerned but didn't think much about it once the drooling stopped and he seemed to be normal-ish. I don't know whether you can link it or not. Most medical bodies are saying it's definitely not linked but I'm a little bit fearful of having Alex further vaccinated just because we don't know. Medical authorities would say it's really wrong to cast aspersions on vaccinations. There's no proof.

(Anthony) My own view is that there probably isn't a link, that vaccination tends to happen at the time an onset (of autism) occurs, but I'm completely open. Look, something strange is happening around that period, even if autism is genetic in origin it doesn't mean that it can't have outside triggers. The thing is so horribly complex.

If you had your time over again, would you have Alex vaccinated?
(Anthony) I'd say probably not, because there is a lingering doubt in my mind. Yet I understand you have a social obligation to have your child vaccinated.  

(Kathy) If it were the case that vaccinations did cause a certain small percentage of the population to react adversely then perhaps they need to have some sort of compensation? It is a very fraught area because what parent is going to have their child vaccinated if there is even a tiny chance that their child may react adversely? But then you could have hundreds of thousands of children dying of measles and other illnesses . . .

Looking after Alex must have placed a huge strain on your marriage and relationship?
(Kathy) I think the sleep deprivation probably had the most devastating effect on us. It was an added an extra pressure that meant it was hard to deal with Alex, hard to have the energy to actually be a family. We just had to get through the day.

(Anthony) That was the worst period.   

Did you become irritable with one another?
(Anthony) Yes. We had our fair share of snapping over trivial things. Blowing things out of all proportion.  

(Kathy) Even if someone offered to look after Alex so we couldn't go out - we were just too tired to go out. And if we did go out . . . well we did, but separately . . .

(Anthony) What happens is you constantly have to tag-team, one person looking after Alex to give the other a break.

(Kathy) And when you're both working full-time, the washing, cleaning, shopping, cooking still has to be done. And Alex is always there so . . . It was more about just being able to function to get through work and the day.  

(Anthony) At times just getting through the day seemed like a miracle.  

So, how come you're still together?
(Anthony) I think there's just a rock solid commitment to the family. We've got to get through this. It's funny, we're brought closer together I think than many families are. The thing that's going to keep you together is your commitment to each other. And your desire to provide a rock solid foundation for this kid to get his chance.  

(Kathy) You really don't have the luxury of throwing tantrums and storming out and splitting up over trivial things because you have to work together and in that way, you gain more respect for the other person.  There might be really difficult periods but you've taken that journey with that person and you've experienced much more with them. You're in it together.

(Anthony) Who else would understand? And why would you alienate the only other person who is as committed to your son as you are?

How many years have you been partners?
(Anthony) Since 1995. Alex was born in 2001.

What's the impact been on your friendships/social life?
(Kathy) Our world's become smaller. There are times when we can get away - I have a sister interstate and we can go there for a few weeks and spend time with her and the family on the beach and that's lovely. She knows that's a place where Alex can be and they understand and know him. She knows the demands, for example knows that he is limited in what he'll eat so she's quite cool with me making a meal just for him. I don't have to explain anything. Her kids know he talks in this strange language - because Alex has developed his own language, as well as speaking as we do. If he's angry at something it sounds like he's swearing in Martian. So that's very special.

(Anthony) It creeps up on you (social isolation). You have to concentrate on the core things that have to be done. One of my best friends in Sydney who I've known for 20 years, I've hardly seen him in the last 5 years. He emails me to come this or that - and I say I'll try to make it but I never seem to have the time.  And of course the emails become less frequent over time.  It's no judgement on him whatsoever. I'm the one not fronting up. It creeps in and before you know it, you've lost a whole part of your life.

(Kathy) If it hadn't been such a big 'crash' for Alex (with the onset of autism) and we hadn't tried give him such intensive therapy as we did, he wouldn't have made the gains he's made.

How's Alex going now?
(Anthony) He's a tall 9 year old. Apart from that period with the onset of autism and the sleep issues, he's always been a very easygoing type of kid. That's the one thing that hasn't changed. For example, if he's been watching too much dvd and you say 'ok, enough,' a child can react in a number of ways - get violent or somehow overreact. Alex will protest but he will wear things. He's not a radically difficult person. Some of his autistic behaviours can be very annoying but his temperament is beautiful. He's a beautiful, warm, very innocent boy. A pleasure to be with and a pleasure to know. That's testament to the work Kathy's put into him, the school and the therapy.

You believe behavioural therapy has been good for Alex?
(Kathy) I do. The basis of this sort of therapy is just breaking things down into achievable amounts, which is the way you often teach things anyway but maybe it's broken down more.

His speech has improved, he's recovered some of his vocabulary?
(Kathy) His receptive language is quite good now so if you ask him something or tell him to do something, he understands. That was very difficult for him initially because his auditory processing had gone berserk. Who knows how it sounded to him but now that seems to have righted itself to some degree especially with concise, simple demands. His spoken language was even harder for him. Now he seems to be much more capable, to a degree, of saying what he wants.

Does Alex ever get sick of the therapy?
(Anthony) Sometimes he says 'go away!' But he's also very affectionate and sociable. Most nights he'll come into the bedroom and want a cuddle and a tickle. It's a bit of a cliché about autism that they are utterly off in their own world and can't relate socially. It's not the case.

(Kathy) There are different types of autism. Some kids don't like to be touched, but they gradually will get used to it. Sometimes it's an over-sensitivity to people touching them or being near them. Over time, those sorts of kids will be fine. Alex never had that problem.

(Anthony) Alex is the opposite, he's a serial hugger.

(Kathy) At school we try to teach them so they know what's appropriate and what's not.  School plays a fairly vital role in that because it's outside the home and family circle and it's addressing those sorts of things. If they're always in the same environment then they think that's the way things are everywhere.

(Anthony) That's why inclusion's important. For example, 'my child's a bit difficult in public, so I'll stop taking him on the bus or train. I'll take him in the car where he's in a more protected environment' . . . well where's that going to stop? How are they ever going to learn what's socially appropriate? It's important they learn little things like it's not right to sit up against the person next to you in the bus. If we don't actively include them, and go for more and more protected settings, they learn less and less, become more and more excluded.

(Kathy) It's very important that the kids remain a part of the community.

You believe that Governments, both Labour and Liberal, have failed children like Alex?
(Anthony) Yes. Things have improved since 2006, when the federal Labour government started bringing in packages for early intervention, $12,000 over two years for children age 6 and under. It's woefully inadequate but it's something. For children who will benefit from ABA, an intensive early intervention program is very expensive. When we were doing it in the early 2000s the costs were between $30,000-$60,000 a year depending on the severity of the condition. $12,000 over 2 years is $6,000 a year. Where's the rest of the money going to come from?

Do you think it's that no-one within the system cares?
(Anthony) I think it can be hard to convince someone to spend a lot of money on a therapy that may not get the person with the condition up to a particularly high level of functioning. But for a parent, every gain your child makes is worth every cent spent on it. And it's pretty much proven that the great majority of children with autism will make gains from ABA.

Also, I don't think a lot is known about autism. One of the reasons I wrote this book is so that people will know more. To raise awareness about autism, about its complexity and how debilitating it is, or it can be. And how much help people like my son, who's at the severe end of the spectrum, need and how vulnerable they are if they cannot communicate at all.

Alex could easily be that child rocking the corner, utterly enclosed in his own world and unmanageable if he had not been given the right therapy. I think if people knew more about autism, they would be warmly supportive of more funding and more measures for children like Alex. And there's the question of lack of visibility, lack of political will that has resulted in the poor level of services.

Would you like someone like the PM, Julia Gillard visit Alex's school?
(Anthony) It would be wonderful if the government took more notice. Schools like Woodbury are flagships but unfortunately they're expensive to run and highly vulnerable to funding cuts.

How many people suffer from autism?
(Anthony) The statistic you often see is that one in 100 people in the western world suffer from it to some degree. The gender ratio of those with autism is 4 boys to 1 girl.

So do you blame lack of government support for tragedies such as the Daniela Dawes case, the woman who was charged with suffocating her autistic son, Jason?
(Anthony) I looked into the case and this was a family under enormous pressure. It's pretty clear that their son did not receive adequate services. She was given a non-custodial sentence of five years and the judge's final ruling stated that their son hadn't received adequate early intervention.

You can't guarantee the safety of every child. But if you put parents under unbearable pressure, make them the sole custodians of a child with difficult behaviours, a child who has one of the most debilitating and mysterious conditions in the history of mental disorders, then you're playing a dangerous statistical game. Some of those parents, for whatever reason, are not going to be able to cope, nor should they be expected to do so without adequate support. This can and does have tragic consequences.

All I can ask is that our kids have the best possible chance of leading happy and rewarding lives. And that their parents aren't crushed by the responsibility of trying to provide it. I think we can lessen the chances of children dying at the hands of their own parents if they are better supported. We can also prevent family break-up. It's been said that parents with disabled children are significantly more likely to separate.

If we're going to have government policy that makes parents of children with autism the main carers then those families must be supported properly. There is no reason why anybody should suddenly become an expert in a condition that no-one really understands. If we can give them better support there is a chance we will prevent terrible outcomes like this.

Have there been times when you became depressed about your son?
(Kathy) I think I found the time when Alex developed autism and had his first 'crash,' emotionally very difficult. I think I was completely shocked and grieving. From that point on things have been difficult but we have seen gradual improvements in him and ongoing improvement in his development and in his life, so I haven't actually felt depressed about it.

Once we were given some direction on how to help, where to start, it made a huge difference. There are times when I wish that he didn't have autism and that we were just a normal family.

(Anthony) Your frame of mind improves when you feel you can do something that's going to work . . .

(Kathy) And you see it start to work . . .

Apart from explaining what autism is what do you think you will achieve with your book, When Horse Became Saw?
(Anthony) I hope that through my book people can understand the impact autism has on a family, and to enter into what might be like to have autism. The majority of people who have severe forms of it cannot speak for themselves. How is such a group to make itself known, unless we tell their stories? And as a writer, that's something I can do.

I also want people to understand that we're not all the same and that there's such a thing as neuro-diversity. By broadening people's understanding and taking them into the heart of what it means to have autism, hopefully I open up this notion that we are all complex. Some of us are different to the point where we are extremely vulnerable and dependent on others to help us. I want this book to make a difference. I want Alex to have a place.