Mr. Adam Harris:

I thank the Chair and members for the opportunity to speak to them on this important topic. My name is Adam Harris. I am autistic and I am the founder and CEO of AsIAm, Ireland's autism charity. I am joined by our senior policy officer, Adrian Carroll.

Our organisation is celebrating ten years of activism this month and our vision is an Ireland in which every autistic person is accepted as they are, that is, equal, valued and respected. We place lived experience at the heart of everything we do, both in terms of the supports we provide to our community, the advocacy we conduct and our efforts to support communities, organisations and individuals to take steps to address the pervasive but often invisible barriers which prevent the, at least, one in 27 people in Ireland who are autistic from enjoying the same chance. We welcome participating in today’s discussion during World Autism Month, which provides an important opportunity for our organisation to centre the voice of our community and highlight the human rights issues that confront our community every day of every month of every year. It is also a pleasure to participate in this discussion on the importance of self-advocacy and the role of DPOs as a proud member of the DPO Network.

Ensuring access and dignity to public services is of critical importance to our community. It is also a right autistic people are told we already have. That said, the lived experience of our community on the ground tells a very different story. Just last week, AsIAm published our Same Chance Report 2023, which documents the experiences of some 1,700 autistic people in Ireland across the life cycle. The report also captures public attitudes to autistic people through a poll of a representative sample of 1,000 Irish adults. The data presented captures clearly that in interacting with public services across government, autistic people face barriers not experienced by others. Key findings included: 53% of those represented had to access their assessment privately; 60% were on waiting lists to access a basic range of supports; 71% do not believe, based on their experiences, that our healthcare system is inclusive of and accessible to our community; and 66% of those in receipt of social welfare payments said the current rates were not enough to meet their needs, with 74% incurring additional costs due to being autistic. While a majority felt the education system was not inclusive of autistic people, one in four reported not having access to a suitable school place that meets their needs, with 29% reporting their child had been placed on a reduced timetable without their consent.

Against this backdrop, it is not difficult to understand why 90% did not believe they had the same chance as non-autistic people in Irish society, with 73% feeling that there were treated differently in a negative way and 83% feeling they had to change who they are in order to receive the same chance in day-to-day activities in Irish society.

Autistic people in Ireland clearly do not enjoy the same chance. What can be done to address this? It is notable that our community identified a lack of access to supports and services and the judgment and attitude of others as the two greatest barriers to inclusion in the community. In many respects, these barriers are intertwined with the judgment and attitudes of our society, informing the availability, quality and culture of the services, or lack thereof, available to our community.

The UNCRPD provides a clear framework in which both environmental and attitudinal barriers can be addressed to ensure access and dignity in public services. In the time available to me, I would like to bring to the committee's attention some concrete steps that must be taken to ensure this reality on the ground. One such step entails rights, not grace and favour. As long as our public services continue to operate based on a grace-and-favour approach, our community will not have parity of access to public services. It is critical that the optional protocol to the UNCRPD be ratified during the lifetime of this Oireachtas and that existing disability legislation be reviewed, updated and fully commenced. This includes ensuring that the Disability Act is compliant with the UNCRPD and provides a right to supports and services, not just a right to timely assessment, a right that is presently breached daily across Ireland. Additionally, the EPSEN Act review must lead to legislation that, when implemented, will ensure every child has the right to access an education that meets his or her needs in a school in their local community.

Another step involves hearing our voice.We must live true not only to the adage "Nothing about us without us" but also to the even simpler principle of "Nothing without us". For far too long, the voices of disabled people have been absent from public decision-making processes, including but not limited to disability issues themselves. A very recent example of this was significant changes to the SET allocation model in schools, which was implemented following extensive consultation with trade unions and management bodies but without a single consultation with DPOs or disability groups.

Hearing our voice means much more than simply box-ticking "listening exercises"; it means effectively resourcing DPOs and supporting the development of self-advocacy.

Next is disaggregated data and effective planning. To ensure dignity and access to public services, you need to have access to data to inform the planning of such services and to measure the access and experience of minority groups on the ground. Ireland fails consistently in this regard, and the lack of data on autism, which is not even adequately addressed in the census question on disability, makes our community invisible in policy formulation, accessing public services and vindicating our rights to an equitable experience.

For the entire history of the disabled community, stereotypes, ableism and a deficit-based approach have created barriers to accessing public services and undermined the dignity of our community. We must see the roll-out of neuroaffirmative training, appropriate to role and context, to every public servant in the community. Furthermore, we must not see equality of access as the permission to enter but the opportunity to have the same experience. It is a shameful reality that autistic and disabled people experience discrimination in accessing public services, whether it is mental health services, which structurally discriminate against autistic people, or in our education system, where approaches rooted in behaviourism continue to discriminate. We must see proactive regulation to ensure consistent quality and safeguards so the dignity of autistic and disabled people is guaranteed and protected by independent investigatory and compliance mechanisms.

Fundamentally, it is possible to ensure dignified, equitable access to public services only where investment is seen through the rights lens and not as crumbs from the table or something to be praised and lauded. Our community deserves the same chance, and the investment to achieve that, whether through accessible public transport or public buildings or access to the healthcare system, must be seen as non-negotiable, not an optional extra. I thank the committee.