Ms Tara Matthews:

Good morning. Thank you for the invitation to attend the meeting to discuss autism policy. I am joined today by Dr. Pat Matthews, our executive director. Pat is a parent of an autistic adult. I also have an older brother with autism who lives in County Kildare in a residential service specifically for autistic people, where he lives his life with dignity and respect, and where his will and preferences are recognised.

The Irish Society for Autism is a national organisation formed in 1963. This year, we celebrate 60 years of campaigning and providing services and supports to autistic people and their families. We are the longest established specialist organisation for autistic people in Ireland. The Irish Society for Autism is also a founding member of Autism Europe and a founding member of the World Autism Organisation. Dr. Pat Matthews was the first president of the World Autism Organisation and we currently sit on the executive committee of the organisation. For his tireless work in the area of autism in Ireland, Dr. Pat Matthews has previously been honoured with the People of the Year award and also an honorary doctorate from Trinity College.

We provide information and support services to thousands of people across the country, including autistic adults and children, parents and family members, educators, students, businesses, State Departments and health sectors workers. We provide resources such as our autism awareness cards and autism alert cards. The number of queries and requests we receive every year is increasing. We also offer training and information across numerous sectors, carry out research to enable us to understand how we can best serve the autism community and advocate on behalf of autistic people and their families. We regularly assist businesses that are working towards creating more autism-friendly workplaces and environments and help to increase their understanding of autism. In the past, we have provided in-house information and training to many Dáil staff to assist in their daily working lives. As a side note, on our way in today, when we were coming through security, one of the security staff remembered the training and recognised us, which was very nice to see.

The Irish Society for Autism was the co-author of the European Charter of Rights for Persons with Autism, which was signed by 331 members of the European Parliament and passed by the European Union in 1996. The charter states that autistic people should have the same rights as enjoyed by all EU citizens and that these rights should be enhanced and enforced by appropriate legislation in each member state. The charter recommends that diagnostic services, appropriate education, family support, housing, training and lifelong care should have been adequately addressed and appropriate services provided at domestic level. Eighteen years after the charter was adopted, the protection of the rights of autistic people within EU member states is far from being uniform or satisfactory.

The UN declared that 2 April of each year will mark World Autism Awareness Day. In 2009, Dr. Pat Matthews, our executive director, was invited to the UN in New York to speak on “Autism and Human Rights: Understanding and Safeguarding the Rights of People with Autism in Observance of World Autism Awareness Day”. He stressed at that time that what we needed was critical legislation which protects and promotes the rights of autistic people.

The UN Convention on the Rights of Persons with Disabilities, UNCRPD, establishes the human rights and fundamental freedoms of persons with disabilities whose full enjoyment must be guaranteed without discrimination in order to remove all the barriers that prevent their participation as equal members of society. In the preamble, state parties recognise “the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support”, such as people with autism who need lifelong services and support. As a country that has ratified the UNCRPD, we are obliged, therefore, to take action to fully protect the rights of persons with disabilities, in particular those who require intensive additional supports. The argument for autism-specific legislation is not only the best practice model but is one that must be taken to fulfil our obligations under the convention.

Robust legislation should make provision for an autism strategy, which is the methodology for its creation and the mechanism for its implementation and monitoring. Research and consultation show that strategies have a positive impact when they have a practical approach, that is, when they identify the specific needs of all people concerned, including carers and families. This emphasises the need for data gathering, for which there should be a legislative provision. Furthermore, legislation that reflects the needs of autistic people at important life stages will allow for more considered and focused planning.

The best practice approach to autism strategies are those designed in close partnership with all autism organisations, especially those who advocate for those who cannot represent themselves.

There should be provision for ongoing monitoring, direction and co-ordination of plans at national and regional levels and adequate public funding for their implementation. Today we are talking about autism and autism policy in Ireland. The Irish Society for Autism has seen and been involved in many policy changes over the years. Several reports and strategies in relation to autism have been written, for example that of the Taskforce on Autism in 2001, none of which has had a substantial impact on the lives of autistic people due to the lack of a legal framework to drive significant change. The Irish Society for Autism was heavily involved in this strategy and a lot of people invested their time and energy into it. We were very hopeful that all of the recommendations would be fully implemented to significantly improve the lives of autistic people. However, it is an illustration of one such comprehensive strategy that largely failed to be implemented, in particular, the recommendation that the taskforce made on the urgent establishment of an autism database and prevalence records to facilitate proper planning. There are no reliable statistics on the prevalence of autism in Ireland. Even our closest neighbour, Northern Ireland, gathers significant data in terms of referrals and diagnoses, on a quarterly basis, for both school-going aged children and adults. Without knowledge, we cannot plan effectively for the services and supports that are required. How many assessments does the HSE need to plan for every year for children and for adults?

It is over 20 years since this was recommended and data has yet to be gathered in any systematic way. This further highlights the need for legislation which would provide a legal framework for data gathering and therefore facilitate accurate planning and provision. Autism plans and strategies reinforced by a comprehensive legal framework are the correct way to support and improve the quality of life for autistic people and their families. The World Health Assembly in 2013 recommended to member states "to develop or update and implement relevant policies, legislation, and multisectoral plans, supported by sufficient human, financial and technical resources" to address the needs of autistic people. Without legislation, plans can be pushed aside or lose pace if political will fails to drive them forward. Legislation ensures that the trajectory of an autism plan or strategy stays on course. If codes of practice, plans or strategies are to be successful and hold weight, they need to be embedded in legislation.

The example of Northern Ireland supports this statement. Autism legislation was introduced in 2011 and updated in 2022 with the Autism (Amendment) Act. This legislation provides practical guidance on methodology for the autism strategy, specifics in relation to funding, the appointment of an independent reviewer and the provision of data collection. Furthermore, the Northern Ireland legislation makes specific reference to the articles of UNCRPD. It is this rights-based approach to legislation and autism strategy creation that provides a model for best practice. The Northern Ireland autism strategy and action plan have been expressly developed in accordance with the UNCRPD to support the values of dignity, respect, independence, choice, equality and anti-discrimination for people with autism, their families and carers. The provisions of the convention have informed the issues, the strategic priorities and the actions provided in the strategy and in the action plan. The Autism Bill in Ireland first started its journey in 2012 and yet here we are, 11 years later, with no Bill and a significantly worse situation. We are extremely concerned about the lack of progress on the Bill. Autistic people and their families have been waiting for legislation since 1996. It is unjust and unfair. This is your opportunity.

As mentioned, the Irish Society for Autism was established in 1963. Sixty years later, in 2023, and almost 27 years after the European Charter of Rights for Persons with autism was passed by the European Parliament, the basic needs and human rights of Autistic people in Ireland are still not being met. While much has been achieved throughout those years, a lot more progress is required in order to ensure that the rights of autistic people are enshrined in law. Many autistic children cannot access an appropriate assessment of their needs in a timely manner, and the window for crucial early Intervention passes them by. Accessing basic healthcare services and suitable educational placements sometimes requires unnecessary formal or legal battles that families have to navigate in addition to daily life. Clear pathways to assessment and services for autistic adults are not in place and provisions for their future are unclear.

We also believe it is important to highlight the ageing profile of our population. According to The Irish Longitudinal Study on Ageing, TILDA, the number of people aged 65 and over is projected to double between 2011 and 2031. TILDA highlights that despite the evidence indicating the "importance of ageing, there is a lack of social, economic and health information on older persons in Ireland. This information is essential to enable forward planning and to ensure a 'healthy and happy' life span in later life". Policymaking and service provision will therefore be constrained without further understanding of the ageing autistic adult and their needs. Now more than ever, it is evident that we must continue to move towards the implementation of autism-specific legislation in order to address these challenges and put in place a legal framework to ensure that the rights of autistic people are recognised and upheld. The Irish Society for Autism has been working consistently over the past number of years to challenge the Government to ensure that the rights of autistic people are protected in law. It is our position that autism legislation, together with an autism plan and strategy, is essential if people with autism, their families and carers are to be provided with the necessary supports and structures throughout every stage of life. Age-specific structured service provision is an essential component. Furthermore, autistic people require access to timely diagnosis; appropriate early support services and services across their life span; education; employment; and a range of health and other services, including access to appropriate residential services if required.

All of these need to be provided in an environment of inclusion and respect. These elements that reflect and protect individuals’ rights, as enshrined in the UNCRPD, must be at the core of legislation. While some may argue that the rights of people with autism can be protected under general disability legislation, we believe that autism-specific legislation is the only means of ensuring the rights of autistic people are adequately protected. I thank the members for the opportunity to address the committee on this important issue. They have heard the issues affecting autistic people, their families and carers, but if we were to ask one thing from them today it would be that they would ensure that the autism Bill is brought forward without further delay, and bring an end to the long wait for legislation. I thank the members for their time.