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Provide the choice of ABA-based interventions for children with ASD in Northern Ireland.

This petition had 2,920 supporters


ABA (Applied Behaviour Analysis) is not a ‘treatment’ for autism, but the scientific discipline from which principles of behaviour are uncovered which can give both children and adults new skills and ways of engaging with others. It’s perhaps best known in working with children with autism, but it’s also used with young people and adults in the workplace, in drug and alcohol programmes and the principles are the foundation of ordinary good parenting.  Currently in the USA, 34 States, plus the District of Columbia have now mandated insurance companies to cover ABA-based interventions. Also, an increasing number of the nation's top companies are voluntarily offering their employees autism coverage in their health plans. With the addition of JPMorgan Chase, 14 of the Fortune Top 10 firms now provide coverage for Applied Behaviour Analysis.

For young children, these are sometimes referred to as ‘Early Intensive Behavioural Interventions’ (EIBI). Investing in effective early intervention 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].

Yet 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. 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.

In anything we approach in life, knowledge is the key, the knowledge or training gives us the power to deal with situations with confidence. Why in Northern Ireland are parents not being given the choices to make informed decisions?

 

I want to explain why this is important by sharing the story of my son Ryan’s journey so far.

Ryan is the youngest of three children. He had delayed speech, and with social situations like family events or even right down to going for the weekly food shopping, he was unable to cope. I dreaded going out the front door with him -due to the lack of speech he was so frustrated, he would have continuous meltdowns. Lashing out hitting,  screaming , kicking biting etc.- this was our lowest point when I felt Ryan was rejecting society and what was worse, I had this little unreachable toddler and society in turn was rejecting him. The stares and comments from other people use to stab right through me.

At this point in Ryan’s life, we were cut off from the world around us and it was having an impact on the whole family. Family days out were non-existent.  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. I chose ABA (Applied Behaviour Analysis) - night after night researching, and the reason I made this choice is: ABA is science based and evidence proven.

I found PEAT on the Springfield Road in Belfast- they are a charity which trains and supports parents of children with autism. This is when I received my Simple Steps pack. Simple Steps enabled me to have all the resources to carry out ABA at home.

We have had an ABA-based programme in place over one and half years now, and Ryan is now verbal, in mainstream nursery with a full time classroom assistant. His progress is unbelievable. Teaching appropriate behaviours and new skills not only gave Ryan but us, as a family, a life again. We can now do what other families take for granted the shopping, play parks, eating out etc...

Ryan is one of many children who have been diagnosed with autism in Northern Ireland. I am starting this petition to try and help other families who are in the situation I was in a year and a half ago. In the USA and in European countries, governments are recognising ABA-based interventions as the effective way to treat autism and informing parents about this when their child is diagnosed. Why are parents in Northern Ireland not being informed and supported in choosing ABA?

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.



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