FRASER'S
STORY
Our son Fraser was diagnosed with classic Autism at two and a half years. Considered on the severe end of the spectrum Fraser was non verbal, had major challenges adapting to social situations, engaged primarily in highly repetitive meaningless activities and had significant behavioural problems.
We were advised that Fraser would probably never talk, never work, he wasn't capable of feeling love and would never live independently. As a parent, this was probably the hardest thing to hear, and I so desperately wanted to prove all of these 'experts' wrong.
We enrolled Fraser into an early intervention centre that ran a group program recommended to us by the Psychologist and Paediatrician we saw. When he was enrolled, he had to have several tests done to see where he sat against his peers. Again the news wasn't encouraging as they found he was in the bottom 1% for children his age.
I can remember at this point I had no tears left so I said to my husband, well the only way was up. I was hoping that after 12 months of early intervention he might be in the bottom 10 or 20%. This wasn't the case. He was still in the bottom 1%. He had improved in many ways but the gap just kept widening.
During his second year at the centre, Fraser was fortunate enough to be selected to participate in a pilot program where he received 2 and 1/2 hours of ABA therapy per week. We noticed improvements immediately. He began answering to his name for the first time ever and his eye contact was improving.
We had not been told anything about ABA therapy by professionals when he was diagnosed. The advice was just to do speech therapy, occupational therapy and general psychology, so I began researching all about ABA therapy online. I was thinking it was a revolutionary new treatment. It wasn't.
ABA has been around for a long time. Children with Autism in Europe and America in the 70's were having ABA therapy with huge success. The research I read suggested that intensity and quality was important - a minimum of 20 hours of one-to-one per week was needed to be effective.
So my husband and I approached the early intervention centre where Fraser was attending to see if he could have more ABA therapy in his week. We even offered to provide our own therapists. We were told no.
The Australian government doesn't recognise ABA therapy in the same way as other countries and many families have to fund it themselves.
We were incredibly frustrated - here was finally a chance for Fraser to become the best he could and yet red tape was in the way!
The more I researched the more and more I felt this was Fraser's only chance at a normal life.
I spoke to a good friend of mine who has a nephew with ASD that she always talks so fondly of. She told me about how her nephew received ABA therapy at home and had made so much progress he now attended mainstream school, played team sports and was living a very full life. This is what I wanted for Fraser. So I made some calls, met our ABA service provider and as they say, the rest is history.
Fraser has been doing around 33 hours of ABA therapy every week at home and he hasn't looked back. He is 14 weeks into the program and is now saying on average 100 words in every 3 hour session. Previously, he would say only 1 or 2 words on very rare occasions.
The change in him in such a short time is incredible.
ABA has changed every aspect of his life. The best part is that he is just so happy. He loves the therapy sessions and is just so proud of himself and what he can now do.
We are so excited to see what the next 12 months will bring for Fraser, when the change in such a short time has been so incredible. He will be 5 years old in March and next week he will be attending mainstream kindergarten for the first time.
I feel frustrated that children here in Australia with Autism don't have the same opportunities as those in America, Canada and Europe.
At the moment, our government does not recognise ABA therapy as a proven intervention for children with Autism, let alone provide this support that these children and their families need and deserve. As a result only 15% of children in Australia go on to work as adults compared to 70% in these overseas countries.
The burden on the welfare system alone is incredible with 1 in every 100 children in Australia now being diagnosed with Autism Spectrum Disorder.
I wish we had been told about ABA therapy when Fraser was initially diagnosed but sadly this wasn't the case. Many medical professionals don't seem to recommend this therapy to parents as it isn't recognised by the government, despite the many years of empirical research for ABA.
I wish every child like Fraser will one day have the opportunity to do an ABA program and become the best they can possibly be.
OSCAR'S
STORY
It's hard to put into words exactly how much doing ABA has changed the life of our son or our family, however it will suffice to say it has been profound and immeasurable for Oscar and our family. Our starting point was a little boy who struggled to engage with people, whose behaviour was erratic and unpredictable and difficult to control, who had a huge language and global developmental delay. He couldn't follow instructions, couldn't play, couldn't talk in a meaningful way, couldn't respond and relate to people and our family life was beginning to descend into chaos and despair.
At the age of 2 we took him for developmental assessment and were told he had a global developmental delay. As health professionals ourselves (OT and Psychologist) we committed to taking him along to the various allied health appointments and tried to follow up at home, but it was so difficult to implement the good advice and activities - we couldn't engage him in activities, he didn't seem able to learn, and we realised he needed to be taught each thing explicitly over and over again. We felt like we were swimming against a rip tide, and watching our son get swept out to sea.
His difficulties continued and we became convinced that they were more than just a developmental delay. By the time he was diagnosed with autism at the age of 3 years and 9 months old, we had already started our ABA program. We had been recommended ABA via our family and some good friends who knew of the service, and we realised that we had a found a model of assessment and intervention which may just save our son.
For the first time his development started to leap forward - his progress was immediate and rapid and we haven't looked back.
We started ABA with around 16 hours per week. The initial focus was on teaching him how to sit quietly, attend and learn. I remember my husband and I weeping with joy to watch our little boy sit still with his hands down, for the first time in his life, during his first ever session. Once he had learned how to learn (sit, concentrate, engage), he started to make astounding progress, in all areas. The sessions with his therapists were designed to be really fun and totally based around play. They tapped into his interests to provide rewards for his learning and positive behaviour. They would use things that he enjoyed doing in order to teach him the skills he needed. At times he would protest at the start of a session by behaving badly, but his therapists knew how to engage with him and get him playing, and then he would quickly settle and have a great time. We started flying through programs: ABA taught him how to talk in a functional way; to become stronger in his body and improve in his fine and gross motor skills so that he could participate with other children in games and activities; to be able to engage with people, respond, and develop friendships; to be toilet-trained and independent in caring for himself; and to self-regulate and control his emotions and responses.
After a few months we decided to increase his ABA hours, as we could see the amazing gains he was making, and we were also aware that school was not far away, and knew we had a limited amount of time in which to prepare him. We also arranged for an ABA shadow aide to attend his kindy program with him. We were averaging at this stage around 30-40 hours per week, including kindy hours, and it was working. He was developing and thriving.
After 1 and half years of ABA our son entered a mainstream school for his prep year, again with an ABA shadow aide, and turned out to be one of the top students for literacy and numeracy. He was able to fully participate with his class, sitting quietly during mat time, managing transitions during activities, and performing in the school concerts. He made friends and was invited on play dates and to birthday parties. He participated in the athletics carnival and did swimming lessons along with his class at school. He stood in front of the class and presented his "show and tell". He was not disruptive, he did not need a sensory room or a special time out area, and his friends and their parents did not know he had a diagnosis of autism. After school he did a soccer class without any assistance - participating and following the instructions of the coach. In fact, very few concessions were needed to be made for him in order to attend school. All of this was beyond our wildest dreams when we first started ABA.
At the time we he received his diagnosis of autism, Oscar rated between the 0.5 to 4th percentile across all developmental domains, which means that 96-99.5% of children his age were performing better than him in all areas of his life. At that time we were devastated. How was he ever going to "catch up"? How would he ever attend school, make friends and be an independent person? Would anyone other than his family be able to love him or him love them? After only one year of ABA , his repeat standardised assessment revealed that his scores had improved dramatically to where he was now performing between the 5th and 27th percentile - with many areas falling in a "normal" range. I can only imagine how he would rate now. Our despair and sadness has been turned to hope. He has just started Year 1, and is continuing to thrive. We are fading our ABA hours down this year, after 3 years, as he is now able to learn more independently in the classroom. But the best thing, is that we feel we have relationship and connection with him. Before ABA we were often sad and frustrated, loving our child but not understanding his behaviour and not able to engage and connect with him. Now he is calm, happy and responsive and we can talk and connect with him. He was always lovely but now his personality really shines. ABA has given him the skills he has needed to enjoy his life and rise to his potential.
ABA has been a wonderful journey for our son and our family. It has been hard at times, but not as hard as having a child who is limited in his potential because of autism.
We may fade out our formal ABA hours but we will continue to use the ABA principles and approach for life, with all of our children. ABA has given our family new life and our son the skills for living - to be the best that he can be.
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