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Column Autism – the ‘hidden condition’ – has been ignored for too long

Autism services have been historically underfunded, but with the new Autism Bill steps are finally being taken to acknowledge the rights of autistic citizens and those of their families, writes Michael McCarthy TD.

“I’m like a wasp in a jar – I see and hear people around me but when I try to get into their world I just keep hitting the glass.”

THESE ARE THE words of a person with autism – the complex developmental disorder that affects one in every 100 people worldwide.

Autism has long been known as the ‘hidden condition’ because it may not be immediately evident in people who have the disorder. The result is a sector that has been historically underfunded, meaning its services lag far behind that of other disabilities, often leaving people with autism unable to reach their full potential and live independent lives.

Enabling people with autism to break through the metaphorical glass jar is at the heart of the Autism Bill which I brought before Dáil Eireann last Friday. The Bill received unanimous cross-party support in the chamber and was accepted by Minister for Health James Reilly, who acknowledged the need for a national policy response to autism. Tánaiste Eamon Gilmore said it was an ‘historic day for people with autism’ and that it marked ‘a first step in making autism a national priority’.

Ireland is trailing behinds its European counterparts

As a local TD for the constituency of Cork South-West, I have encountered too many families who are frustrated with poor access to autism services locally. Their stories struck a chord with me and it was clear that something had to be done on a political level to address their very genuine and sincere concerns.

Ireland has been trailing its European counterparts for many years in this particular policy area. Since 2008, Autism Acts have been introduced in England and Northern Ireland, while Wales and Scotland implemented national autism strategies which I understand are working well.

Now the Irish Government has fallen into step with these jurisdictions by approving an Autism Bill that provides for a national autism strategy. It aims to ensure a unified standard of autism care nationally and that services are delivered in a more consistent manner.

Currently autism services in Ireland are under-developed and lack co-ordination. A HSE review published in February 2012 found that autism services varied from patchy and ineffective in some places to comprehensive and integrated in others. A national autism strategy would put an end to this postcode lottery system while also ensuring equity of service and early intervention.

Measures such as an autism awareness campaign and clear pathways of support for families are covered by the strategy. It also provides for the establishment of a data collection system and the commissioning of research to record and report the incidence of autism here. The lack of available data on autism in Ireland is something which stakeholders repeatedly flag as being a key problem in terms of planning for future service needs and something which further differentiates it from other disabilities.

‘Falling off a cliff face’

A fundamental aspect of the autism strategy is that it will be cross-Departmental and will require various ministers to plan and implement strategies in their own sectoral areas. For example, there is scope for the Department of the Environment to ensure the type of housing provided to people with autism is commensurate with their needs and abilities. I also believe there is a role for the Department of Jobs to devise job-ready programmes for adults with autism who may progress through the education system, or to encourage businesses to run special programmes for hiring autistic employees who may possess certain valuable skills such as focus and attention to detail that are common characteristics of the condition.

Not only is this legislation autism-specific, it is also adult-specific. Many Irish parents with experience of autism will tell you that appropriate services cease to exist once their child turns 18 and that there are no transitional arrangements available to ease their child into the adult services. Many parents have likened this experience to ‘falling off a cliff face’ and the vacuum is thought to be the main reason why adults with autism have high rates of depression, unemployment and social isolation.

Why does this ‘cliff face’ occur? As adult services are organised into separate mental health and learning disability teams, adults with autism often end up falling between two stools because autism is neither a learning disability nor a mental health condition – it is a developmental disorder (although it does happen from time to time that people with autism have an accompanying learning disability and/or mental health needs). Therefore the structure of adult health services effectively discriminates against adults with autism and is a leading cause of inequality for them.

The first step in making autism a national priority

An autism strategy will address this anomaly in the system and ensure that parents won’t have to endure the awful uncertainty of not knowing how the needs of their autistic child will be met once they turn 18.

Last Friday was a historic day for people with autism in Ireland. It marked the first time in the history of our State that an Irish Government acknowledged the rights of citizens with autism and those of their families. It will ensure that future Governments will be obliged to meet the needs of these people – whether those needs are of an educational, social, health, economic or environmental nature.

This legislation is our first step in making autism a national priority in this country and I hope it will be a springboard for many new developments in the autism field in Ireland. I know that we will all look back on this monumental legislative development as the first step in a truly historic journey towards breaking the glass jar of autism.

Deputy Michael McCarthy is a Labour Party TD for Cork South-West and is also Chair of the Oireachtas Committee on the Environment, Culture and the Gaeltacht. McCarthy was elected to Dáil Eireann in 2011, having previously served as a member of Seanad Eireann for nine years. He is also on the Constitutional Convention. McCarthy first entered public life in 1999, when he was was elected to Cork County Council for the Skibbereen Electoral Area, making him the youngest county councillor in the country that term.

Michael McCarthy TD
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