Michael McCarthy (Cork South West, Labour) | Oireachtas source

I move: "That the Bill be now read a Second Time."

It is with a great sense of pride that I introduce the Autism Bill to the House. This legislation has grown close to my heart since I first began working on it almost a year ago and I have been deeply invested in it ever since.

I acknowledge the presence of a number of people in the Visitors Gallery who have autism or family members with autism. If passed into law, this Bill will have a positive impact on their lives. On behalf of my colleagues, I warmly welcome them to their national House of Parliament. I hope this will be the first of many strides we will take together as we pursue our common vision for improved autism services. I also welcome representatives from organisations such as the Irish Society for Autism. I look forward to working with the society and other stakeholders such as Shine Autism and Irish Autism Action as the process continues.

I thank the Minister for Health, Deputy James Reilly, for supporting the Bill and his positive engagement with me on it thus far. The Minister has a deep interest in this issue and he and I share similar values on it. I look forward to progressing to the next phase of the process with him and his officials.

This is an historic day for people with autism as the Bill marks our first step in making autism a national priority. I hope that it will be a springboard for many new developments in the autism field and we will look back on this day in years to come as the day a Government recognised the highly complex needs of people with autism and accepted the need to enshrine their rights in legislation to enable them to reach their full potential and lead meaningful, independent lives.

The Bill places a statutory duty on the Government to publish a national strategy within two years of its enactment. If enacted, it will ensure future Governments, regardless of their complexion or hue, will be obliged to meet the needs of people with autism spectrum disorder, ASD, and support them in order that they can reach their full potential.

My motivation for bringing forward a Private Member's Bill on autism stemmed from a multiplicity of factors. In my capacity as a Deputy for Cork South-West I have had too many meetings with parents of children and adults with autism who are frustrated with the lack of services available in the area. A sort of postcode lottery system exists in respect of access to autism services, and equity of access is not being provided. The stories of those whom I have met have struck a chord with me. Parents with autism believe they must shout louder and harder than other parents because autism has been historically misunderstood and underfunded. For this reason, autism services lag far behind those available in other areas of disability.

On further investigation into the matter, it became clear that a national approach would be required to tackle these issues head on and legislation would be the first step in addressing these problems. Another key factor has been the increased prevalence of autism diagnosis in recent decades. This trend is not unique to Ireland but is a worldwide phenomenon. It is estimated that over the past 40 years, the prevalence of autism has multiplied roughly tenfold worldwide and it is now generally accepted internationally that one in 100 people are on the autism disorder spectrum.

The stunning increase in ASD diagnosis is attributable to a number of factors, specifically changes in diagnostic criteria, better resources dedicated to autism diagnosis, increased awareness, greater parental education of the condition and better clinical management. Furthermore, the increased prevalence of the condition has coincided with a move by Governments in neighbouring countries to develop autism specific strategies and legislation in recent years. Autism legislation has been enacted in England and Northern Ireland, while the Scottish and Welsh Governments have implemented strategies which are, I understand, working well.

Today, the Irish Government is stepping into line with our neighbouring jurisdictions, such as Northern Ireland, in terms of national policy on autism by recognising that autism needs its own national strategy owing to the uniqueness and complexities of the condition and acknowledging that the current model of service delivery is unsustainable or inappropriate to meet the needs of people with autistic spectrum disorder and providing equity of access or intervention. The latter point was made in a Health Service Executive review into national autism services published in February 2012. The review found that autism services varied geographically, from patchy and ineffective in some places to robust, comprehensive and integrated in other areas. It also noted that different models and approaches to the provision of health services were evident across local health office and Health Service Executive areas. It described the current model as unsustainable and in need of a substantive Government response. This Bill is my response, as a Government back bench Deputy, and I am pleased to have the Minister's support for this initiative.

A further motivating factor influencing the need for legislation is the swelling number of people leaving Irish schools with autism and finding they are, as some experts describe it, "falling off a cliff face" in terms of accessing adequate health and education services when they become an adult. There is no transition from childhood to adulthood and the majority of adults with autism are either not served or are under-served. Put simply, they cannot, as adults, access the same services they could access as children.

Statistics and research are generally scarce in this area. The national strategy proposed in the Bill provides for the establishment of a data collection system in order that we can begin recording the incidence of autism in Ireland. A study published by the Irish and Welsh societies for autism last year established that the number of pupils with autism graduating from secondary school was set to increase substantially from 2012 onwards. The study, which surveyed secondary schools from five counties, forecast that this trend, if continued, would have considerable implications for schools and post-school providers. This was an important finding because it indicated there would be a corresponding increase in demand for support in preparing pupils with autism for leaving school and preparing the general workforce and education sectors that students with autism may enter. This would also result in increased demand for specialist training in autism for staff in post-primary schools.

One may reasonably ask the reason I have focused on autism. I propose to outline a number of reasons a specific Bill is needed to deal with the condition, before addressing the reasons we must specifically design the Bill with a focus on adults with autism. Autism is a hidden disability that is not always recognised and is still profoundly misunderstood in many quarters. Campaigners point out that it is difficult to raise awareness of autism because people with the condition do not appear to be disabled.

Autism is also different from other disabilities, in that it has been historically underfunded and, therefore, services for people with autism spectrum disorder, ASD, lag far behind those for people with other disabilities. For example, those on the autistic spectrum have lower rates of employment than people with other disabilities.

Autism is a developmental disability, not a learning disability nor a mental health condition, although it has been known to happen that people with autism may have an accompanying learning disability and-or mental health needs. Generally, however, the developmental dimension to the condition means that the service as it exists often cannot meet the autism related needs of the person. It is also a complex condition and those with more complex needs require an autism-specific service tailored to meet their needs.

As adult services are organised into separate mental health and learning disability teams, the structure tends to discriminate against adults with autism and is a leading cause of inequality, particularly for people with ASD. To use an old adage, people with autism often fall between two stools in terms of service provision.

I turn the House's attention to the Scottish model and to research carried out by its National Autistic Society as part of its "I Exist" campaign in 2008. The research found that thousands of adults with autism faced a "miserable daily reality" that left them feeling isolated and ignored, unable to access the required support, and often completely dependent on their "overburdened" families. It found that 54% of the adults questioned stated that they did not receive enough support to meet their needs and that 52% of adults had not had an assessment of their needs since the age of 18 years. The report also found that more than half of autistic adults had suffered from depression and had been bullied or harassed since the age of 18 years. Only one in eight adults with autism was in employment.

The purpose of the Bill is to provide a national autism strategy so that services can be rolled out more consistently across the State and people with autism can access services as close to their homes as possible. The system of having a postcode lottery for accessing services is wholly unfair and we must have equity of access and intervention to ensure that adults with autism reach their full potential and lead independent, meaningful lives.

Within the strategy are provisions for an autism awareness drive. This would consist of poster, media and online campaigns. In many cases of autism, earlier intervention can bring on improvements. For this reason, it is critical we raise awareness about the signs of autism, act on them and provide appropriate services as soon as possible.

The strategy also provides for a data collection system and commissioning of research so as to assess the prevalence of autism in this country and plan for future service needs more efficiently. The lack of available data on autism in Ireland is something that stakeholders repeatedly flag as being a key problem that marks it out from other conditions or disabilities. If the Government does not know exactly how many people have autism, planning services is impossible.

While the Department of Health is proposed as the primary driver of the national strategy, it is a cross-departmental strategy requiring relevant line Ministers to co-ordinate, plan and implement strategies in their own sectoral areas. For example, there is scope for the Department of the Environment, Community and Local Government to develop a macro strategy to ensure that the type of housing provided to people with ASD is commensurate with their needs and abilities. There is scope within the Department of Education and Skills to develop further strategies to provide specialised educational techniques to assist pupils with ASD that may not be available in generic educational environments. There is also scope for the Department of Jobs, Enterprise and Innovation to devise job-ready programmes for adults with ASD who may progress through the education system and wish to enter the workforce, or to encourage businesses to run special programs for hiring autistic employees who may possess certain valuable skills, such as the focus and attention to detail that are common characteristics of the condition.

The Bill is not perfect by any means. It will require some amendment, to which I am open, as doing so would only serve to enhance the final piece of work. I look forward to the process of consultation with the Minister, his officials and the stakeholders that I hope will flow from today's proceedings. This is not the end of our work. Rather, it is the beginning of an aspirational and productive route. It is the first step on the journey.

People with autism should be entitled to the same rights as every other citizen. However, the very nature of autism - its complexity, its varying degrees of severity, the historical underfunding of the sector and a profound societal misconception of the condition - necessitates special consideration in terms of health services, education, housing, social inclusion and other areas.

World Autism Awareness Day takes place on 2 April. To mark the occasion and to celebrate the organisation's 50th anniversary, the Irish Society for Autism will hold an international conference in Dublin. What a wonderful tribute it would be to the work of such organisations, to the efforts of families and carers of people with ASD the length and breadth of Ireland, and to the lives of the many thousands of Irish people with the condition if we were to support this historic Bill and send out an international message next month as we host the international conference that Ireland recognises the rights of people with autism and intends to support and accommodate them accordingly.

I am deeply proud to introduce this historic Bill in the House and I look forward to working with the Minister, Deputy Reilly, the various stakeholders and the Committee on Health and Children in ensuring the Government breaks down the barriers and disintegrates the stigma faced by people with autism. To quote Franklin D. Roosevelt: "To reach a port we must set sail." Let that journey begin here and now.

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