Mr. Adam Harris:

I thank the committee for the invitation to speak at today’s meeting. We warmly welcome the approach the committee has adopted, in line with Article 7 of the CRPD that it is exploring today, in inviting not just representative groups to appear before it but also to ensure it hears directly from autistic children and young people themselves. Emily has highlighted far better than I or any adult could the barriers she and other autistic young people face based on her own experiences and advocacy. We are so proud of Emily and all the members of our youth leadership team who inform our work and advocacy every day. I congratulate Emily on her fantastic remarks here today.

As Ireland’s autism charity, we can attest to the systemic barriers autistic children face in accessing their rights on a parity with other young people. It is clear, whether we talk about autism- or disability-specific public services or broader Irish society, our young people do not get timely access to support or parity of access to public services. What is more, the voice of autistic young people is not only embedded at the core of discourse on matters affecting our community, but it is too often absent in its entirety. I look forward to having the opportunity to explore the wide range of issues this encompasses, from education to therapeutic supports, when we come to questions. In the limited time that is available, however, I would like to highlight a number of specific issues.

The first is timely access to support. Autistic children continue to face wholly unacceptable barriers to accessing both autism assessments and therapeutic supports. Our Same Chance Report, published in April 2024, found that a majority of respondents had to access their diagnosis privately. Only 31% were accessing support from their local CDNT team, with 60% of those on waiting lists to access support and of whom 37% had waited for longer than four years. That is why we are calling for a stakeholder-led review of progressing disability services, which clearly is not working for our community. The current terms of reference for the review are far too narrow. In addition, as we approach the end of this Oireachtas term, we are calling for a review of the Disability Act in full in the lifetime of the next Oireachtas.

Our autism information line recently supported its 10,000th caller since November 2021. We have circulated to all members a breakdown of the data on the issues we are contacted about. A total of 1,548 calls have related to accessing supports for the child and family and 1,244 relate to challenges or barriers in day-to-day life for children. This shows the scale of challenges autistic children are facing across Ireland, with terms such as “Sorry, I can’t help”, “No, there is a waiting list for that”, and “fight” and “battle” all to commonly feature in the stories we hear.

Of course, access to support goes beyond disability services and we remain deeply concerned at the barriers autistic young people face in accessing mental health services, where too often they experience structural discrimination to accessing such support, despite being statistically more likely to require it.This is before we talk about the inexplicable link between autism and poverty. We regret that that has still not been addressed in the current budget cycle.

In terms of inclusive education, this September we yet again saw children without access to the appropriate school places which they need and are entitled to in their local community. As we meet today, far too many children remain without a school place. This year’s Same Chance Report found one in four families did not feel their child had a school place that met their needs.

Inclusive education goes beyond access, however, and again is often the first in a series of struggles for children and their families. We need a sea change in attitude from a grace and favour approach to a rights-based approach to supports in school. Even more critically, we need to see a culture shift. Last week we published independent research funded by the Irish Human Rights and Equality Commission which conducted a rights-based analysis of codes of behaviour in Irish schools as they are experienced by autistic students. Of 40 randomly selected codes reviewed, none were found to be rights-compliant. Many contained ableist language and failed to balance rights or prioritise the best interests of the child. This is deeply concerning when we disproportionately see autistic children punished, secluded, placed on reduced timetables, suspended or expelled within our education system.

I note we continue to await the publication of guidelines on the use of seclusion and restraint in our classrooms, promised since 2018. Autistic children in our education system are less protected from the use of restraint than prisoners. This must change and we must see guidelines which are rights-based, child-centred and robust.

Emily has spoken powerfully of her experiences in the AsIAm youth leadership team. It is the right of autistic young people to understand their identity, to feel their neurotype is valued and valid in Irish life, and to have opportunities to explore their identity and develop self-advocacy skills. These opportunities are far too limited, particularly at a time in which the very real value of neuro-affirmative diagnosis is undervalued and challenged by officialdom. Every autistic child must have the chance to be an advocate in their own lives and, if they wish, for their peers and community. Only by investing in this area do we safeguard the rights of autistic people into the future

At the heart of Article 7 is the right to have your voice heard, perhaps the most fundamental of all rights. For many in our community, the right to access timely AAC programmes to support autistic young people to communicate through augmentative and alternative means is far too limited. Every child must be supported to access this support as and when they need it, not just in terms of devices or technology but also in terms of training and support for the child, family and professional supporters. AsIAm is proud to be piloting a programme of support in this area and aims to expand it significantly in the years ahead. As we mark our tenth anniversary, we note the progress that has been made in communities in terms of not only autism awareness but true acceptance, but that reality is yet to be felt by every child in every part of Ireland. We will continue our work in this regard and call on the State to meets its obligations without further delay. In that regard, we recently published our general election manifesto which outlines the steps we think need to be taken in the next five years to ensure every child fully realises their rights.