Thursday 30 May 2013 15:00
Tanja Bencun, Feature producer
SABC News Article
In 2004 Ilana Gershlowitz was told that her son, David, was severely autistic (a neurodevelopmental disorder). He was just 20 months old. The doctor said he would never be able to speak verbally, he would never toilet train, he is retarded and she should consider taking him to an institution.
Faced with this dark reality, Ilana went on a journey where she immersed herself into research and educating herself on the facts and developments surrounding autism. This journey has found Ilana in a life dedicated to helping affected parents make informed decisions about treatment options.
She set up a small school in 2007 to help with the needs of autistic children. It has since become The Star Academy where one-on-one therapy using the ABA (Applied Behaviour Analysis) principles and C.A.R.D (The Center for Autism and Related Disorders) model are practiced intensively on children with an autism spectrum disorder. ABA is the most effective and widely used therapy for autism. Autism Spectrum Disorders are developmental disabilities that can hinder social and behavioural skills characterized by great difficulty in communicating and forming relationships.
“Everyone has challenges in life. Our son (David) was diagnosed 8 years ago. He will be 11 this year. If you see David now in his teaching session (at the Star Academy), he is able to communicate with us. He is a functional boy,” she says.
It is very new to South Africa that given the right medical and educational intervention, autism is a treatable and recoverable disorder. Often making references to Professor Martha Herbert, a paediatric neurologist at Harvard and autism expert, Ilana follows her research and findings which say autism can be reversed. Herbert says people with autism get better with the right treatment and we should “stop looking at it as a life sentence but rather as something we can work on.”
Yes, it is a serious condition and not all children will recover but it is treatable and you and your child can live a better life
Parents sometimes have a mental block in seeing the good that can come out of an autistic diagnosis for their children and often think Ilana’s view, which she shares with renowned professors and scientists, that autism is treatable is ignorant. “Yes, it is a serious condition and not all children will recover but it is treatable and you and your child can live a better life,” she says. “I’m a fighter. When David was diagnosed I refused to believe that this was going to be my family’s fate. There was going to be better life for him and for us. There had to be. It’s not that I didn’t accept the autism. I did. I just wanted to fight for us within that.”
Ilana mourned for two years for the child she ‘lost’. She felt despair and admittedly says she wanted to “press the eject button” on her life. But then through educating herself on autism she realised that her family could still have a good life.
“We have made a happy life with David. We have created a new life for ourselves within this world of autism. We have found our purpose. My husband will often say that at least we have a purpose in life. I know what my purpose is and that is to educate South Africa on the autism treatment. To help other parents. To know what their options are. I feel so passionate about passing on the right information to parents because I want to do that in Davis’s merit. I want to make our suffering worthwhile.”
Clearly emotional, Ilana says things don’t always work out the way you planned and this challenging experience has taught her to be more tolerant and flexible. She has also become more adaptable and creative in learning how to communicate with her son and allow him to reach his full potential.
MOTIVATIONAL LEARNING THROUGH THE POWER OF PLAY
Therapist Quincy Jansen sees David 3 to 4 times a week for an intensive two hours at a time. Every child has their own independent programme in their file. His results get scored and graphed and the child moves on once they have achieved specific tasks set out in their learning programme. Children with autism can learn but in a very specific way and it requires very specific expertise to get them where they can be but working closely with a child using the specialised therapy produces excellent results.
Quincy says that the learning techniques used are individualised and vary from kid to kid, and this is what makes ABA so successful. He has seen noticeable improvements with David in his sessions with him at the academy.
“I have seen huge progress with David in the past year and a half…His irregular behaviour is a lot better, he is more flexible and able at regulating himself…If we sit for 20 minutes and do four things and something else comes up to add on to what he thought was initially expected from him then he’s okay with that now…Previously it might have resulted in inappropriate behaviours but now he is better at regulating himself. If there is a change in his normal routine then he’s happy to go with it as long as he is given warning.”
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Quincy has also seen growth in his language capabilities. He can now say words which is something he struggles with.
Ilana says: “ABA requires very specific technique and very functional communication so he (David) can take the skills he has learnt in this session and generalise them in everyday life…to pay for stuff at the Woolworths and Pick n Pay.”
Watching the session with David, it is clear that ABA is functional education, resembling motivational playing with the purpose of learning. However, it has been criticised by some saying it is a ‘robotic’ form of learning. Something I can’t relate to after seeing first-hand how engaging and positive the therapy is.
It is financially stressful for parents to educate a child with autism because it requires one on one intervention. The expertise did not exist in South Africa until recently so The Star Academy had to import the expertise. ABA is not covered by medical aid and this is Ilana’s next challenge. “I am working on medical aid to recognise our programme. It is recognised in the US. There is no board regulating ABA and the department of health would have to legislate it. So we did an executive summary with the help of CARD and we are about to put that into the hands of the minister of health. We hope to see a reform because we need government grants to reach more people.”
Internationally the rate of diagnosis has increased. Statistics in 2000 revealed that 1 in 150 children are affected and more recent stats say 1 in 88 children are identified with an autism spectrum disorder. The Star Academy gets around 12 calls a week from parents wanting to know what their options are. They have four schools in South Africa that can accommodate around 120 children. For those that cannot afford to send their child to the academy, there is an ABA online programme that reaches worldwide.
It’s very hard for the parents faced with an autism diagnosis, but once they start to see that there is hope they start realising that it does not need to be a lifelong disability for them. There aren’t many options for parents. Some choose to put their child in a home where they have a carer. Some can’t deal with it but Ilana says that 80% of the time, they do catch on to the treatment options. There are now medical doctors in SA who are following the medical treatment protocol for autism and therefore the Star Academy is a treatment option.
Ilana is positive about David’s future. His talent is rock climbing, he loves gymnastics and attends classes three times a week. Smiling, she says: “I do see a life for him. I see him having a happy and independent and functional life.”
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