Louise O’Neil, Belfast, Northern Ireland – is mum to 3 children. Her youngest child Ryan 4 was diagnosed with autism in November 2012 aged 3.
Louise told Autism Daily Newscast that this was the day that she grieved for her child’s future. However now she embraces the future and the progress that he has made. She states that this is all down to Ryan receiving Applied Behaviour Analysis (ABA)-based therapy.
Louise told us:
“Teaching Ryan new skills is part of his daily life now and it has made unbelievable changes to his social skills.”
Louise then told us about Ryan’s journey and the early years. She explained that his development was delayed, that he had delayed speech and was unable to cope in social situations. Ryan was also unable to cope with family events and doing simple everyday tasks such as going out to the supermarket.
“I dreaded going out the front door with him due to his lack of speech, he was so frustrated, he would have continuous meltdowns.”
Louise shared that Ryan would lash out and hit, scream, kick and bite. She explained that this was her lowest point and that she felt that Ryan was rejecting society.
She further explains:
“I had this little unreachable toddler and society in turn was rejecting him”
Louise voiced that at this point in her life she felt cut off from the rest of the world and that this was having an impact upon the rest of the family. Louise told Autism Daily Newscast:
“At this stage I knew as a parent I was failing my child, I was distraught; the silence was endless from professionals. Yes they can tell me what autism is, but I was begging for help, support or advice.”
Louise told us that she chose ABA therapy after endless nights of research about therapies and interventions used for children with autism because ABA is science based and evidence proven.
The programme for Ryan has now been in place for over one and a half years and he is now verbal and in a mainstream nursery with a full time classroom assistant.
“Ryan’s progress is unbelievable. Teaching behaviours and new skills has not given Ryan but us as a family a life again. We can now do what other families take for granted like shopping and playing in the park'”
Louise believes that like anything we approach in life, knowledge is key.
“Knowledge and training gives us the power to deal with situations with confidence.”
Then Louise asked the question:
“Why are parents in Northern Ireland not being informed?”
At present both ABA and Early Intensive Behavioural Interventions’ (EIBI) which is used for young children on the autistic spectrum are not being offered to parents. Louise told us:
“Here in Northern Ireland, parents are not offered EIBI, and many are not even told about it by the Health & Social Care Trusts which are responsible for diagnosis and post-diagnostic advice.”
She goes on to further add:
“Despite the lack of any evidence of effectiveness, the Department of Education advocates an ‘eclectic’ approach (a mixture of ‘interventions’) recommended in The Task Group report which was produced in 2002- nearly 12 years ago.”
Louise states that by investing in effective early intervention that this will save a lifetime of social and financial costs.
“The annual cost for supporting adults with autism and their families in the U.K. is estimated to be £25 billion while the lifetime cost per person is £1.23million for someone with ASD and learning disabilities, according to Professor Martin Knapp of the London School of Economics.”
Louise believes that every child, regardless of disability should have the best possible start in life and that early intervention is needed for this to be accomplished.
Her petition states:
‘Northern Ireland has just had an Autism Act passed. If we get enough signatures with this petition, I hope it will encourage the new Autism Strategy Group to look at the autism policies and services being offered to children and families with an open mind and take on board the international evidence about ABA-based interventions which has been ignored for so long. Then other families will have the chance to build the confidence and skills to change their children’s lives for the better.’
The petition can be found here