Mr. Adam Harris:

I thank the committee for the opportunity to present to members on this important topic. I offer my thanks also to the clerk and staff of the committee for all their assistance in advance of this meeting.

AsIAm is a national autism charity. We are an organisation that takes a rights-based, accessibility approach to autism acceptance and inclusion. Approximately half of our team are neurodiverse and we undertake a broad range of work in supporting autistic people, advocating for the rights of our community and engaging with broader Irish society on the steps that can be taken to make communities more inclusive.

We welcome the opportunity to discuss autism services in the context of the UNCRPD. At the outset of the discussion, it might be worth noting some fundamental, structural flaws for autistic people and our families in accessing services that are in full alignment with Ireland's obligations under the convention. The convention deals with rights and rights holders and recognises that disabled people have a right to access the support they need to participate in a society that too often presents barriers to our community. However, Irish systems and services continue to operate on a paternalistic grace and favour charitable model in which the systems often dictate the supports that people are able to access, and autistic people and their families have even less recourse when these systems and services do not respond to their needs or, indeed, fail. Not only that, but while it is deeply regrettable that Ireland was the last country in the EU to ratify the UNCRPD, it remains the case that we do not have a clear timetable for the ratification of the optional protocol. A convention with no mechanism for complaint and resolution for people with disabilities does little to help autistic people whose services are not delivered in a rights-based model.

Our entire approach to disability in this country continues to be rooted in a medical model, not the social model or human rights model set out by the convention. It is often driven and controlled by the interests of large service providers or the HSE's capacity to deliver services, not by the needs of autistic people and their families on the ground.

"Nothing about us without us" is far from a reality when it comes to the design and delivery of autism services, which are often not designed with autistic people, least of all autistic individuals ourselves, in mind. This lack of design goes beyond resources. It deals with the environment and type of service people receive, the staff who provide the service, who may not have an understanding or knowledge of autism, and the self-esteem that is undermined in a model that continues to present autistic people as less capable versions of neurotypical.

Stepping away from these structural realities, what is it like in Ireland to access or attempt to access disability services as an autistic person or family? In AsIAm, we deal with thousands of queries from the community every year, covering a broad range of topics from diagnosis to therapeutic supports and everything in between. The one word that comes to mind in all these categories, and across the entire lifeforce, is "fight". Autistic people and our families have to fight, often until the point of fatigue, from the word go to access the most basic services. In some instances, these supports are specific to autistic people and are provided through disability services but, sadly, even mainstream health services, particularly our mental health services, do not afford parity of access to care for autistic people, despite eight in ten in our community experiencing mental health conditions during the course of our lives and autistic people without an intellectual disability being nine times more likely to die by suicide. This is far from a rights-based approach.

We documented some of these barriers in our recent report Every Child Counts, which examined the experiences of autistic children in accessing HSE services. The realities are bleak. A total of 42% of families had to wait more than two years to access a diagnosis for their child, while 79% were not in receipt of any support from either the early invention team or the school-age team. A further 65% of families were dissatisfied with disability services and just 7% were in receipt of any respite support. The consequences of these barriers are real and can often be devastating for autistic people and our families. It means children experiencing unmet needs and families losing the opportunity to participate fully in the community and often leads to poverty and social exclusion. A study from National University of Ireland Galway, NUIG, showed that families of children on the spectrum experience additional costs of €28,000 per year due to being forced to access private services, leaving work or going part time due to a lack of appropriate supports. This chimes with the experiences of many disabled people and their families, who often experience additional living costs of between €10,000 and €14,000 per year.

Circumstances do not improve when we look at how supports are provided, or usually do not exist, for autistic adults. Adults within our community who do not have their needs recognised or met as a child can usually access an autism diagnosis only privately, typically at a cost of almost €1,000. Autistic adults attending day services often attend services designed not for themselves or autistic people but for people with disabilities in general. The long delays in the commencement of the Assisted Decision Making (Capacity) Act have seen many people continue to have their rights undermined by the so-called Lunacy Regulation (Ireland) Act 1871. Autistic people living at home or independently in the community can often access no formal support structures and, all too often, isolation, poverty, social exclusion, unemployment and mental health crises are a norm for adults within our community.

Just as it is important to recognise that disability rights are not just about services, we should also recognise services are about more than resources. Earlier this year, our organisation argued for a cultural reset in how the HSE and the Department of Health interact with autistic people and our families. The crisis of trust generated by the recent "RTÉ Investigates" programme, coupled with the often adversarial, if not hostile, experience autistic people and families experience while engaging with services, highlights the need for our services to become more person centred and rights based. I echo the need to move away from the behaviours-based model that has done so much damage to autistic people and our families. Put simply, we need services, the HSE and the Government to collaborate, not gatekeep or dictate, and to gain a greater empathy and understanding of the experiences of our community.

To bring about a full alignment between autistic services and the UNCRPD, we recommend the following. We welcome the Government's recent commitment to return to legislation in 12 months' time concerning a national autism strategy. We welcome also the commitment of the Minister of State at the Department of Health, Deputy Rabbitte, to an autism innovation strategy. There is clear political consensus for this strategy, which will serve as an important recognition by the State of the specific needs of autistic people. We need no obstacle to stand in its way. It is vital the HSE progresses public pathways of support for autistic adults to access diagnosis and support but also for autistic people of all ages to access mental health services in a timely manner.

Learning from the experiences of the UK National Health Service, NHS, an obligatory training programme in autism should be rolled out to all staff working in disability and health services. It remains that many staff do not have the training they need to meet meaningfully the needs of autistic service users. We must urgently bring about the revision of our approach to autism and disability within the HSE to move us towards a rights-based model and fully fund the findings of the disability capacity review, which identified that an additional €350 million is required to meet fully the needs of disability services throughout Ireland. Despite the additional funding for disability services set out in the budget, there remains a €230 million shortfall after budget 2022.

Finally, Covid-19 has highlighted for all to see the shortfalls in how we approach disability. Never again can services such as occupational or speech and language therapy be treated as optional extras during a moment of major crisis, where autistic people lost routine, predictability and vital support overnight. We must now use this as an opportunity to question why things have always been done in a certain way, ask whether there is a better way and, critically, listen to the lived experiences of autistic people and their families.

I thank committee members for their time and look forward to their questions.