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DEVELOPMENT / MAY ‘2018

What Is It Like Raising a Child With Autism?

Amanda Major knew something wasn’t right. When her beautiful, smiley little boy started talking less and instead communicating with grunts, she became concerned.

Words OFFSPRING

 After a normal, easy pregnancy, Amanda and husband Marty were delighted when Max William was born on July 1, 2009. Their journey into parenthood began relatively smoothly, with Max a smiley, happy baby and reaching all his milestones at the normal times. It was when Max reached about 15 to 16 months of age, that things began to change. Previously he had been saying words such as Mummy, Daddy and hello, but Amanda says Max instead began using a grunting noise to get attention.  

 “People would tell us not to worry,” she says. “That their child didn’t speak until they were two and boys were slower developers. But when Max was 18 months I thought no, this isn’t right, he is so different to other kids his age, not just in the talking, just everyday things he did. Marty didn’t notice them, but I was the one at playgroups watching him and other children play and noticed he was just, different.” 

 Amanda did some research online and although Autism Spectrum Disorder was one of the things she came across, she knew very little about it. But it planted a seed in her mind and every time she saw Max methodically line up his cars, stack cans from the pantry, flap his hands or cover his ears, she wondered. 

 At that time, the Majors moved from the Wheatbelt to Margaret River in the South West and put Max’s name down to see the local public and private speech pathologists. They finally got an appointment six months later in the public system, by which time Max was two. At his second appointment, the speech pathologist suggested they pursue a formal Autism assessment for Max. 

 “I kind of froze, but took a deep breath and thought, yes maybe I did know that and I was just in denial,” Amanda says. “We had two options. The first was to go through the diagnostic team through the public system. This meant we had a team of three professionals, a paediatrician, psychologist and speech pathologist come to us to do an assessment on Max. This would have taken up to a year for them to do, but I have heard in some cases it can take even longer.” 

 

 

“I thought the longer we waited the more he might slip away into his own little world”

 Their other option was to get a referral to a private paediatrician and have all the assessments done privately, something that would cost a lot more and require a lot more travelling to Perth, but things would be done a lot quicker. 

 “So there was no question with which way we would go,” Amanda says. “I didn’t want to wait, I thought the longer we waited the more he might slip away into his own little world, as his symptoms were becoming more and more noticeable.” 

After more research, Amanda contacted a renowned development paediatrician –her heart sank when she was told the waiting list was six months long and there was a waiting list to even get on that list. She then realised Max’s paediatrician from birth was also a developmental paediatrician, and she was able to secure an appointment within three weeks as Max was already a patient.  

 “The doctor said straight out he believed Max was on the Autism Spectrum,” she says. “He said Max would more than likely be diagnosed with High Functioning Autism – basically he’s quite a switched-on little boy he just lacks communication and social skills. He then referred us to a clinical psychologist and speech pathologist.  

“It felt like my heart was ripped out, stomped on and put back in and I cried. I spent the next few months just crying for no reason, at anytime."

“We had Max diagnosed within two months, which is quite quick compared to some cases. Even though deep down we kind of already knew, actually hearing the words and then receiving the actual diagnose in writing was a shock to the system.  

 “It felt like my heart was ripped out, stomped on and put back in and I cried. I spent the next few months just crying for no reason, at anytime.  

 “Then I snapped and then said – well this isn’t helping Max – so what now, what’s the best thing for Max now, point us in the right direction.” 

 Prior to Max’s diagnosis, there were many moments of frustration for Amanda and Marty – not understanding why Max couldn’t talk, or know what he wanted as he didn’t know any other way of communicating other than a grunt or a meltdown.  

 

“It can be exhausting, everyday you are fighting for your child and you are their speech pathologist, their psychologist, their therapist - you are their voice in the world and you still need to be their Mum."

Add to the mix, a second child, with daughter Evie born four months before Max was diagnosed, and it was certainly a stressful situation. With all honesty, Amanda says she’s glad she took a lot of photos of Evie as a baby, as she was put on the back burner to a degree as Max’s diagnosis took precedence.  

 “It was our first year in Margaret River, I had no friends or family close by, no one near for help or to talk to, with a newborn baby and a toddler getting diagnosed with Autism, it was a very hard time,” she says. 

 “I remember a day when Max wanted something from the kitchen, I didn’t know what he wanted and I was just so exhausted and sick of going through everything in the fridge and cupboard to find what it was he was after. I just started crying and screaming, ‘Why can’t you talk? You should be able to say at least drink or more by now!’ He started crying and screaming because I wasn’t helping him, we were both crying and screaming on the kitchen floor in frustration with each other. 

I just started crying and screaming, ‘Why can’t you talk? You should be able to say at least drink or more by now!’

One of the great supports for Amanda and Marty has been the parent-lead support group South West Autism Network (SWAN). Amanda says the value of connecting with others to share local knowledge has helped her out of several pickles in the past and feeling less alone and understood is something that makes life that little bit easier.  

 “Being the one at home day in and day out, it can all build up,” she says. “It can be exhausting, everyday you are fighting for your child and you are their speech pathologist, their psychologist, their therapist – you are their voice in the world and you still need to be their Mum. So then you start thinking ‘I have to get out of here’, it’s best just to go, stay in a hotel for a night, take an uninterrupted bath, recharge the batteries and you’ll feel so much better for it when you get home to start it all over again.” 

 Max now sees a speech pathologist once a fortnight and one of the therapies used is the Picture Exchange Communication System (PECS), an alternative way for him to communicate using visual aids. While it took a while for him to understand the process, Amanda says when Max showed her a picture of a drink she was overwhelmed as it was the first sign of progress.  

“He loves cuddles, he loves kisses and I just love hearing him say ‘love you’ at the end of the night – we have so much to be thankful for”

Max also does Applied Behavioural Analysis Therapy (ABA), a program put together by a clinical psychologist and involves a therapist sitting with him for two hours at a time teaching him basic skills such as reading, writing, mathematics, communication, gross and fine motor skills and daily living skills.  

 “Basic things that any child would just know, for example emotions, up/down, under/on top, hot/cold, even pretend play, Max needs to be taught specifically and repeatedly,” Amanda says. “Reinforcers are used to motivate and encourage him.” 

 While research has proven that 20 hours of ABA each week is beneficial for progress, the Government only funds four hours a week. So the Major family have to pay for the rest of the therapy privately, which costs roughly $30,000 a year. 

“This therapy won’t work for every child and a lot of people don’t agree with it, but it is evidence-based and has worked for us, we’ve been doing ABA for just over a year and the progress has just been overwhelming,” Amanda says. 

 Max has three therapists, one provided by the Disability Services Commission (DSC) and two private therapists. He also goes to day care two days a week, which Amanda says is great for his social skills. The DSC therapist also goes to day care one day to help Max in social skill situations. The rest of the week is filled with therapy – two hours in the morning and two hours in the afternoon.  

 “It is an expensive exercise, but we both emphatically believe that it is worth every single cent when we are able to have a conversation with our little boy, to see him know what we are saying, to have him answer, laugh, smile, frown, be engaged, to communicate,” Amanda says. 

Thanks to therapy, Max is now at the stage where he can talk, not at a conversation stage like most children his age, but mostly to get or say what he wants.  

“One morning, we were lying in bed and Max was jumping on us and he came out with ‘Daddy’,” Amanda says. “Marty went all quiet and I said ‘did you hear that – he said Daddy’, and Marty said ‘I heard it’. I think he was trying to keep his emotions in check.  

 “Three weeks later Max came running out of his room and called ‘Mummy’, I sunk to my knees and hugged him, probably smothered him, and just cried. It’s hard to explain how such little words can mean so much to someone when you never know if you are going to hear them. 

“It is an expensive exercise, but we both emphatically believe that it is worth every single cent when we are able to have a conversation with our little boy, to see him know what we are saying, to have him answer, laugh, smile, frown, be engaged, to communicate.”

Although Max has made fantastic progress, one of Amanda and Marty’s biggest concerns is what the future holds for their little man. They still don’t know if he will be able to go to university, have friends, hold down a job or be able to live independently.  

 “I think the thing that keeps Marty awake at night is the thought of who will look after Max if and when we can’t,” Amanda says. “At this stage we don’t know that anyone will have to, but it’s still one of the things that we both think about and unfortunately, we don’t have an answer to. 

 “We consider ourselves so lucky; we have such a loveable little boy with his cheeky personality shining through. He loves cuddles, he loves kisses and I just love hearing him say ‘love you’ at the end of the night – we have so much to be thankful for.” 

 

OFFSPRING