Mr. Adam Harris:

I thank the committee for its invitation to speak to the proposed legislation. I pay tribute to the work of Deputy Canney and the wider Regional Group in progressing necessary legislation in this area, as the then Senator James Reilly did in the previous Oireachtas.

I am CEO of AsIAm and I am also an autistic person. By way of introduction, AsIAm is a national autism charity. Our vision is for a society in which every autistic person is accepted as they are - equal, valued and respected. Ours is an autistic-led organisation and our purpose is to advocate for an inclusive society for autistic people that is accessible, accepting and affirming. We work to support the autistic community and our families to engage fully in Irish life and to build the capacity of society to facilitate true inclusion. This work includes the operation of an autism information line, the provision of group-based supports to autistic children, families and adults, and training and accreditation programmes throughout society, including in schools and workplaces.

As members may be aware, autism is a lifelong developmental difference that relates to how a person communicates and interacts with others and how they experience the world around them. Autism is a spectrum, which means no two autistic people are the same and the levels of support they may require in day-to-day life can vary greatly. This different way of thinking means autistic people are neurodivergent and can face significant accessibility barriers in Irish society, which can be disabling. It can also mean each individual autistic person has strengths and abilities that need to be emphasised and harnessed to ensure not just the person's full participation in society but also their full contribution. This is why the language we use in discourse about autism is of such importance. Many members will no doubt know autistic people, be they their family members or friends, but it is important to recognise that at least 3.38% of children in school in Ireland today have an autism diagnosis, and we can assume this prevalence, diagnosed and undiagnosed, exists throughout Irish society. It is important to realise, therefore, that we are talking about an extremely diverse and individual cohort. This is why it is essential in any discussion about autism or legislative proposals to hear the voice of autistic adults, of autistic people with co-occurring disabilities such as intellectual disabilities or those who are members of other intersectional groups, and, critically, of parents of autistic people.

While every autistic person may be different, the barriers faced by our community are all too familiar to many of us. Autistic people face barriers in society that others do not even see and, in turn, do not enjoy the same chances in almost every aspect of Irish society. Indeed, our annual Same Chance report provides something of a "state of the movement" insight into these barriers. This year, the report documented the experiences of more than 900 autistic people and their family members and recorded specific barriers, with 61% finding the health and education system inaccessible for autistic people and the same view in respect of the social protection system at 78%. A total of 90% of our community did not believe the public understand enough about autism, while a vast majority of our community supported legislating for a national autism charity, a view shared by 75% of the Irish public generally in a poll conducted by AsIAm.

If these pervasive barriers were not enough, a lack of sufficient timely support is a near-universal experience for our community. "No, we cannot support you"; "unfortunately, there's a waiting list for that"; and "I'm not the right person to talk to" are a chorus of rejections that individuals and families contend with throughout the life cycle. These barriers were brought to life by those contributing to our Same Chance report. Two such examples include a parent who stated:

Well they are on the books but services are lacking due to staff shortages. Only half the quota of staff are available and there are over 400 children on the books and another 271 waiting.

Another person stated:

We receive little to no support, and if we didn’t chase or follow up with them, we’d get nothing. Maybe [we've gotten] a couple of hours of support in the last 12 months.

These stories are just small anecdotes from one survey in a community that is truly facing a crisis of support across both children and adult services, with only a very small number of adults surveyed reporting receiving any sort of support from the State at all. This is why we passionately believe in the need to legislate for a national autism strategy. Such legislation would serve as a recognition of the pervasive and distinct challenges faced by autistic people and provide a long-term, sustained and statutory framework to provide the same chance for our community.

It is important to note that the barriers we outlined are distinct, in many instances, to our community. Putting in place a national autism strategy would be complementary to the existing framework of disability policy and law, but would recognise the unique needs of our community, including the experiences of autistic adults and those in our community with high support needs.

I acknowledge the commitment of the Minister of State, Deputy Rabbitte, to the publication of an autism innovation strategy, a process in which our organisation is heavily engaged. We also welcome the recent publication of the final report of the Joint Committee on Autism. The 109 recommendations identified by the committee provide a roadmap for change. However, we know that, all too often, superb strategies and reports have sat on shelves. Indeed, our community has awaited meaningful action and implementation since the task force report on autism in 2001. That is why the critical recommendation of the report is to legislate for such a strategy, and it is this proposal in today’s legislation that we see as of critical importance. Since 2012, all parties represented in the Oireachtas, at one stage or another, have indicated their support for such legislation. It is long overdue that that support was given full legal effect to ensure the excellent work done in recent months is not lost due to an election or change in Government priorities.

AsIAm is presently running a campaign in which we are asking all Deputies and Senators to indicate their full support for the implementation of the final report of the Joint Committee on Autism and for the recommendation on legislation to be implemented in the lifetime of this Oireachtas. We are also asking families throughout Ireland to write to their local representatives about the campaign, and we have written to every State agency and Department referenced in the report to seek a meeting and ask for a response to the specific recommended actions. We intend to publish an annual scorecard on implementation.

Our organisation is supportive of the need to legislate for a national autism strategy and for the intentions in this regard of the Bill. Should the Bill proceed, it is important that it be reviewed to ensure the most up-to-date language around autism is used throughout, that a rights-based approach is taken, and that the approaches to support autistic people described within the Bill are neuro-affirmative and rooted in the principles of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. Our organisation will be delighted to assist the committee and individual members in this work and I look forward to our discussion today.