Ange is a project manager and mother of two, living in the Southern Highlands of New South Wales. When I interviewed her for SOHI magazine, we talked about her teenage son – who has autism spectrum disorder (ASD).
"Although we noticed issues with my son’s language and movement around the age of two, he was only formally diagnosed this year at age 14 with autism.
We were given various very informal diagnoses from our paediatrician and GP and we worked with the idea that he had ‘dyspraxia’ for many years, but basically we just treated the symptoms. I realised as time progressed, however, the importance of having a diagnosis. It opens up doors to organisations and extra help. When people know that you come underneath a certain name, it’s easier to get specific support for the child.
We researched ASD and then went to the paediatrician to see if he fit under that, and he did. We then found the most fantastic school for him. (I looked at every school in the state for children with special needs.) And we got funding for intervention in the school too.
I was very conscious that ‘it’s about the child’. It’s not about whether I care if they have a diagnosis or not. It’s about the child. And if there’s any opportunity for help or support or early intervention or anything, whatever you can get for your child. If you can start when they are very young, that’s the key to them progressing in so many ways.
We as a family have always been very proactive. We’ve worked with my boy and looked at all the traditional – and non-traditional – forms of medical help: physiotherapy, naturopathy, homeopathy, kinesiology... any ‘pathy’ you can name, we’ve done it.
Will can’t read or write and his language is very delayed. He has six or seven word utterances. He understands everything but he can’t communicate his feelings. We use a lot of visuals or we ask, “Are you feeling sad, happy”?
His school is very much about life skills as well as teaching reading and writing. We have determined that the most important thing for him is to be able to look after himself, so he goes to a residential program at the school four nights a week. He has to shop, make his bed, make his lunch, do everything for himself. He’s becoming very independent.
The hardest thing
Firstly it’s hard to accept that your child has a problem and do something about it. So many families don’t want to believe that something is wrong with their child and so they don’t seek help.
That’s the hardest thing – just letting go of your own personal issues and realising that the most important person here is the child.
And then being able to find out what’s available to you in the maze of information out there. It’s very important to talk. You’ve got to open up and be honest and talk to people.
There are websites, support groups, little organisations that will help. Networking and finding out what’s available that takes a lot of time. It actually becomes your job – to find the support.
And then you have to find things for your child to do. Government and the education system say that the best thing is to integrate, and that’s right for a little while, but then sometimes it’s not right, and then it’s about the child.
I began to find ‘fitting William in’ was just about fitting him in. And he knew that. For example, he couldn’t play mainstream sport. It was all too overwhelming. He needed one on one help and he couldn’t have that.
There are so many children with special needs, and they have to get the right support. In our area here, there’s only one school for special needs children – and those are with severe needs. People talk about how ‘special’ these children are, but in the end, there’s not enough for them.
But the hardest thing above all was accepting him for who he is.
How do you do that? Well, it’s taken me 14 years. And he’s taught me. He’s forced me to accept, ‘this is me’ with whatever his behaviour is, whether it’s being absolutely out of sorts and hitting and punching and yelling. I’ve been so conscious of how I’m being viewed, and it’s been traumatic. I’ve so many times tried to protect my family by not taking him out in public, but my attitude is changing.
I truly believe that if we need to invite society into their world. We need to bring community into our children’s world, because they are part of it. My initial feeling was ‘I need to keep him safe, away from all this’, but he lives here too. My community have embraced William wholeheartedly. They adore him. That’s my endeavour – to show William that he can be a part of the community.
The acceptance of Will for who he is has to come from me. For so long we’ve wanted to ‘fix’ him so that he can fit into society – speak, learn, read, write, assimilate. And I now realise that we now have to accept William for who he is. And we need to fit into his world.
I’ve had altercations with people about his behaviour. Will doesn’t look disabled. He’s a beautiful looking boy. And that’s half his problem. He looks so normal and when he behaves so badly sometimes and I’m being punched and screamed at, I think, “these people have no clue that my son has ASD.”
I’ve had to learn to hold back and let Will work his own way with people. I’ve sat there and talked for him, and tried to protect him, but in the end, it’s better to let other people be with him. Just allow it. We try to protect our community from being part of our children’s behaviour by removing it, but now I think, “just let it happen”. If he’s going to harm someone, sure I’ll step in, but otherwise I just let him be. It’s terrifying to do that the first few times. You want to speak for them.
Will is so present to the moment and allows himself just to be. Maybe we should take a leaf out of his book. It’s been a very long hard lesson to learn but I can now say to him, “Thank you. For teaching me to seize the moment, to be present to who I am, and I am now there for you. So let’s now move forward. I’m not going to fix you. I’m just going to support you.”
You spend a lot on therapy. It’s hard to say how much. A lot. I mean, we took him to England. We had two years of serious diet therapy. When you’re buying organic,gluten free food, it gets very expensive.
He’s on medication now and we’ve paid for paediatric support. It’s a lot of money. Medicare helps a little. But it’s expensive. I just don’t know how to compare that with a family who has no issues with their child. We didn’t do music, sport or horse-riding on weekends. He didn’t have all that. Paying for his medical help was our way of supporting him.
If I’m very honest, having a child like this is constant pressure. It’s emotional. I can’t tell you the days where I wept – just cried because I couldn’t, can’t see the answer. If you allow yourself to think long term, it’s terrible. You think, ‘my son possibly is not going to have a marriage or children of his own.’ When you reflect on that little piece of knowledge, that’s hard. But the reality is unless you embrace it, it will be hard.
It’s our endeavour now to give him every single opportunity to be independent. As people we have to find answers. We have to find a way. And that’s the most important thing. Otherwise it can become so overwhelming. It’s whether you are going to do something about it and fight it.
We had our daughter six years later. I wanted a sibling for William. I wanted him to have someone that was there for him and to play with him and be a brother or sister. But I was frightened that something would happen to her as well. And I was determined to have a natural birth because I thought, ‘maybe it was the forceps’.
At the moment his sister is very nurturing and mindful of him. I want her to feel that she has her own life and not to always have that level of responsibility, but if that’s in her, that’s how she feels and that’s her own journey. With any of our kids, you can’t protect them, what is, is.
The most important thing in all of this is the parents. You need to be confident, supported and find your way. We won’t all go down the same path. Our children are very different, but there are many similarities too.
William has changed our lives for the better. I listen to myself saying that and I ask myself “Am I just trying to say the right thing here?” But it’s true. Of course there have been so many hard times. There’s not one family in the world that doesn’t have its hard times. Our hard time just happens to be a child with autism. But the things we learn are just incredible. We have to see that as part of our life.
There’s no right or wrong way in all this. And don’t worry about if you haven’t done something or everything. It’s ok. You’ve got to stop beating yourself up. Right now, I’m doing the best I can right now and if you can say that, that’s fantastic. Just be confident. You can do this and you can get through this. Once you realise that, you can go about getting the best support you can.
Our own journeys
It’s hard though. You can’t stop thinking about what your child is missing out. Will was never invited to a party in six years of primary school. I even said to myself, “Well, I actually don’t want to do whatever it was that other children were doing.” But it was a dodge and a front. And that’s about not being honest.
I went to see a counsellor because I felt I had some ‘stuff’ there but I didn’t know what it was.
When she said, “Have you ever told anyone how difficult it was with Will and the autism?” I just had a well of sadness come up. I actually couldn’t finish the counselling because I was crying so much. And i realised in that whole time I had never acknowledged, even to my husband, how hard and how tough it had been. It was just always ‘keep going, keep going, keep going’.
For the first time I was able to say, “yes, it was so hard.” That feeling of sadness continued for days and days. It was like someone opened up and said, “ok, you can feel it now”.
If there’s one thing that’s clear to me now it’s that it’s so much about us. You just have to let go and start allowing yourself to change. As soon as you can understand that, it’s so much easier. I have a journal with space to write three things I’m grateful for every day. Things like ‘a great walk with the dog’. It makes everything so simple.
Hard times and rainbows
This year was terrible at school. He was just lashing out at everyone. I had to let him know it was ok to express it, but show him how to do it safely. At home I took to punching pillows and yelling, and screaming in the car saying, “Will, come on,” to the point where we ended up laughing.
I could see the smile come on his face and I kept saying to him, “You need to help me. Tell me what I need to do.” He gave me a hug, and I thought, “Will, you gorgeous soul. In all of this you are still so giving.” And it turned around. I’d see him get angry or anxious and be able to bring himself out of it.
You get to a point of thinking, “There’s nowhere else to go. There’s nothing else to do.”
But there’s always something you can do. Oftentimes we’re learning about ourselves. That’s what we have to reflect on. I’m not just ‘coping’ any more. I’m getting on with it. It’s life. So again William has created a new learning experience for me.
I’ve had a teacher call me – like a rainbow of sunshine – calling to say, “I know this is not appropriate, but I want you to know that I love Will so much. We know how difficult it is right now, but we just want to let you know how much we love him.” That phone call made such a difference.