Nem Kearns:

I thank the Cathaoirleach and committee members for the invitation to discuss autism policy. Neuro Pride Ireland is the national disabled persons' organisation representing neurodivergent people from, or living on, the island of Ireland. It was founded as a cross-neurodivergency organisation in response to community need as the majority of neurodivergent people have more than one neurodivergent identity. For example, up to 80% of autistic people also have ADHD. In addition to holding monthly peer support, cultural and social events and an annual festival for our approximately 900 members, we produce educational materials and actively advocate for neurodivergent people’s right to full participation in all aspects of society.

At present, as other witnesses have highlighted, there is no real public pathway to diagnosis for autistic adults in Ireland. Women, LGBTQ+ people, people from migrant and ethnic minority communities and people over the age of 30 are much more likely to have been overlooked for diagnosis in Ireland. This, in turn, creates inequality of access to appropriate supports which negatively impacts all aspects of an autistic person's life. For example, autistic women have a lower average life expectancy than autistic men and face an even higher risk of suicide due in part to their greater difficulty in being recognised as in need of diagnosis and support. Irish data on racial disparities in diagnosis are lacking. However, international trends and the experience of many of our community members indicate that similar biases make it very hard for migrant and ethnic minorities to access diagnosis, putting them at greater risk of misdiagnosis and dismissal.

Introducing universal screening for autism and other neurodivergencies in educational and mental health services would not only greatly improve public health outcomes but would save the State in associated costs and help to address the systemic under-identification of autistic people from overlooked communities. Research shows that formally diagnosed and self-identified autistics experience the same barriers and poor outcomes across all areas of life. However, access to educational support, workplace accommodations and a number of other crucial social and State supports is still largely dependent on being able to afford and access a formal diagnosis.

As most autistic people are neurodivergent in other ways, the lack of services available to provide assessment across a range of neurodivergent traits means most cannot afford to access diagnosis for all their needs and instead have to pick the one that is most urgent. Lack of up-to-date training and persistent myths make it harder to access support. We still hear accounts from parents who are told by their GP that girls cannot get autism and, worryingly frequently, we hear from autistic adults, disproportionately women, who are informed that although they meet the diagnostic criteria during their assessment, their practitioners decided to withhold their diagnosis because they were in a romantic relationship, have children or have completed third level education.

Many GPs, teachers and other professionals have not been given the opportunity to learn from recent leaps in understanding of autism and will find huge benefit from being given the opportunity to receive up-to-date, informed training co-developed and delivered by autistic experts. The lack of understanding and support for the needs of autistic women and marginalised people places us at hugely increased risk throughout our lives. For instance, nine in ten autistic women have survived sexual violence and evidence suggests that ethnic and marginalised autistic people are at increased risk of misdiagnosis, involuntary detention and prescription of inappropriate medications.

Another often overlooked part of our community is autistic people with intellectual disabilities and non- or partially-speaking autistics. Meaningful and supported access to augmentative and alternative communication, AAC, including support training to families and support services, is absolutely fundamental in empowering all autistic people to realise their right to live independently and fully participate in all aspects of society. We are concerned that non- or minimally-speaking autistic people, particularly those in institutional care or under wardship who have never been given the opportunity to access robust AAC, may face significant barriers in exercising their rights under the UN Convention on the Rights of Persons with Disability, CRPD, and the Assisted Decision-Making (Capacity) Act. We are also concerned about widespread reports of AAC being used as a reward that needs to be earned through good behaviour. This is in direct conflict with the rights of disabled people.

We are, however, moving in the right direction as a country, as shown by the enactment of the Assisted Decision-Making (Capacity) Act. We also welcome the news that guidelines to eliminate the use of traumatising practices of restraint and seclusion in schools are being developed. We hope that this heralds the beginning of a move away from these and other harmful behavioural interventions across Ireland and that the views and experiences of disabled people will be at the centre of new approaches built on a foundation of human rights and dignity. As part of the roll-out of these guidelines, it is essential that teachers and support workers are equipped with funded training on neuro-affirmative evidence-based alternatives to coercive techniques that we are thankfully leaving behind.

Autistic and otherwise neurodivergent people pay a heavy price, sometimes with our lives, when we are expected to mask our neurodivergent traits to fit in to non-accepting environments. Something we hear time and again from our new Neuro Pride Ireland members, whether they are in their teens or past retirement age, is that our community is the first place in their lives they have felt able to be truly themselves. Many cry or are overwhelmed at their first experience of something every person should experience by right – being accepted and valued for who they are.

We welcome the new rights-based approaches informed by better understandings being embraced by educators, healthcare practitioners and others, including members of this committee and other legislators. We can no longer seek to impose social conformity but must instead aim to embrace and support the diversity and rich variety of the society we live in, including that of our autistic community.