Ms Gillian Kearns:

I am speaking on behalf of a group of autistic adults who came together to highlight areas we feel are crucial to improving the lives of autistic adults and children. We would like to add our experience to give a greater understanding of the current issues faced by the autistic community within a human rights framework. Our previous submission to the joint committee highlighted a range of issues of concern to the autistic community in Ireland. This submission puts particular focus on three urgent human rights issues experienced by autistic people in Irish care and educational settings. These issues are behavioural interventionist therapies, such as applied behaviour analysis, ABA, the use of isolation, seclusion and restraint; and the provision of augmented alternative communication, AAC. We would like to speak about the lack of diagnostic and post-diagnostic service provision for autistic adults in Ireland.

The use of behavioural interventionist therapies to "train" autistic people to appear indistinguishable from their peers contravenes the autistic person's right to their own agency and identity, which we argue is in contravention of Articles 3(8) and 17 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. Compliance training in the form of ABA and related behavioural therapies undermine the safety and well-being of autistic young people and leave them vulnerable to abuse and significant mental health difficulties in later life, including a more than 85% increased risk of complex PTSD. The goals of behavioural interventionist training are not determined by or with the disabled people they are used on, as is required by the UNCRPD. The premise of ABA is similar to that of so-called gay conversion therapies and historically has links to that project. A growing body of research has established that these interventions are ineffective at extinguishing challenging behaviours and are violating the rights of autistic young people, causing significant long-lasting damage to their mental health and quality of life while offering no long-term improvements.

As autistic adults who are aware of the huge toll taken by masking, which includes the likelihood of increased suicidal ideation, we are concerned about the rise in use of these interventions throughout Ireland and call for an urgent investigation into these practices from a human rights perspective. Parents and carers in need of support are turning to this multi-billion euro business model in the hopes of helping their autistic loved ones, without being made aware of the inherent dangers of forcing people to hide their authentic autistic identities.

Isolation, seclusion and restraint of disabled people are employed by schools and care services across Ireland as standard practice and can cause extreme trauma and have long-term mental health impacts. These practices are disproportionately used against intellectually disabled, neurodivergent and ethnic minority children, and pose a risk to their right to equal access to education as articulated under Article 24 of the UNCRPD. Currently, we have no transparency on the prevalence of these practices in Ireland nor are the institutions using them under any obligation to report instances to an independent monitoring body. We believe that these practices, when viewed in the context of the harm they cause and conscious of their disproportionate use on disabled people, are not compliant with Articles 14 and 15 of the UNCRPD. We urge the committee to examine this issue and to encourage the Department of Education to introduce similar reporting and oversight on the use of isolation, seclusion and restraint in schools as that introduced for the use of reduced timetables in September of this year. We believe that the current lack of monitoring of these practices in schools and care settings could potentially constitute a failure to fully realise Article 16(3) of the UNCRPD.

Regrettably, the express goal of most therapies offered to autistic people in Ireland is to make us indistinguishable from our peers. This often leads to an emphasis on using verbal speech and discouragement of any communication which is viewed as not typical, denying autistic people agency. Acknowledging how fundamental communication is to our lives, in conjunction with the specific importance of non-verbal speech in autistic culture, we contend that prioritisation of verbal speech over non-verbal speech is not in alignment with the definitions and general principles of the convention, which specifically refer to augmentative and alternative communication modes.

We emphasise the need for a review into diagnostic and post-diagnostic service provision for autistic adults. The majority of autistic adults have no access to autism diagnosis and post-diagnostic support. Autistic people may have been diagnosed with another condition, without knowing they are autistic, which may be the core issue. Therefore, we call for routine autism screening of adults with mental health or learning disabilities, as they would benefit from more tailored support. The lack of, or very limited, public pathways to autistic diagnosis unfairly impacts those who cannot afford to pay privately, disproportionately those from minority groupings. Autistic people have a higher incidence of mental health conditions, self-harm and suicidality, which demonstrates that there is an urgent need for autism treatment pathways in mental health services.

We request that autistic adults are granted access to post-diagnostic support and treatment from specialists, advisers and counsellors with up-to-date knowledge on autism, autistic-informed approaches and on how to support mentally unwell autistics. Health services need to have consideration of conditions commonly co-occurring with autism, and provide appropriate screening, diagnosis and support. To bring Ireland in line with the UNCRPD, personal assistance services need to be put on a statutory basis and to be made available based on need and not diagnosis, including to autistic adults. Article 6 of the UNCRPD recognises the multiple forms of discrimination experienced by disabled women and girls. In order for Article 6 to be upheld, measures must be taken to ensure that women and girls have full and equal access to all rights, which includes equal access to correct diagnosis and support.

We emphasise that when planning and providing services to disabled people, it is essential to consider what we are trying to achieve and why, and whether there are any ethical implications.

It is crucial to work with autistic people and their representative organisations to develop ways to support autistic people that are positive and effective and which do not enforce neurotypicality or prioritise non-disabled views on the value of disabled lives and choices. Identifying and measuring targets that are meaningful and endorsed by the autistic community is essential both to prevent harmful interventions which oppose self and societal acceptance and to ensure that all therapies are aligned with the provisions and the vision of the UNCRPD.