2026-06-23

11. Deputy Grace Boland asked the Minister for Children, Disability and Equality the extent of engagement her Department has had with the autism community, including autistic individuals, advocacy organisations and representative groups, in the development of the recently announced new autism assessment and intervention pathway protocol; and if she will make a statement on the matter. [43029/26]

I welcome the new autism assessment and intervention pathway protocol. It is an effort to bring greater consistency as to how autism is assessed across services. The success of this reform will depend on whether autistic people and their families feel that it reflects their lived experience. The Minister of State might please advise us as to what engagement took place with the autism community in developing the protocol.

As the Deputy will be aware, on 26 May, the HSE launched the new autism assessment and intervention pathway protocol, or the autism protocol. Once implemented, it will apply to all HSE and HSE-funded providers, as well as private providers. I am delighted that extensive collaboration by Government underpinned the development of the autism protocol. My Department and I remain committed to ongoing engagement with autistic individuals, families and representative organisations to continue to improve access to services. The protocol introduces a three-tiered approach to autism assessment, reflecting the evidence and lived experience that some presentations are easier to identify than others. It matches the level of assessment to the complexity of each case, as determined by clinicians. The pathway is specific to autism assessment and includes differential diagnosis where necessary, along with developing a formulation to better understand the person’s lived experience and the support they require. The autism protocol was developed over five years. It was developed with input from people with lived experience, civil society, clinicians across multiple disciplines and service leaders from the disability, primary care and mental health sectors. The service improvement programme board for the autistic community is a national HSE governance body that provides oversight, leadership and accountability for autism assessment and intervention services, including the autism protocol. When the service improvement programme board for the autistic community was established, a national expression of interest ensured representation from individuals with lived experience, including young people, adults and family members. The board included senior operational and clinical decision-makers, academic support and representatives with lived experience as equal contributors. As the programme progressed, two working groups were created. The assessment and pathways working group, which reports to the service improvement programme board for the autistic community, included three representatives with lived experience and clinicians from psychology, occupational therapy, speech and language therapy, public health nursing and social work. It also included senior managers, family members and leaders, and they helped shape it.

I thank the Minister of State. In regard to going forward and making sure that the lived experience of autistic people and their families included and that we learn from the experience they go through in this new process, can she confirm that there will be that ongoing structured engagement around any reforms, changes or tweaks made to the protocol, as may be required from the process?

Absolutely. I am completely happy to say that to the Deputy. As she said in her opening remarks, the success of this depends on people's lived experience. That is exactly what we have used to help shape it. We also had expert input from a clinical advisory group as well as that assessment and pathways working group within the service improvement programme board for the autistic community. That was to ensure there was also a clinical perspective on this. The assessment and pathways working group produced a comprehensive report. It was over 250 pages long and it outlined the new assessment approach. There were two versions of that protocol that were shared through workshops and webinars. Two consultation sessions took place in March with civil society, advocacy groups and people with lived experience. Feedback was provided to participants. To be really clear, our approach, that of the Minister, Deputy Foley and I, and of our Department and the HSE, is to include people with lived experience. "Nothing about us without us" is something we are very proud to stand over.

I know the Minister of State touched on it earlier but my area has one of the longest waiting lists for assessments of need. What parents at home want to know is whether this protocol will help them get assessments and therapies? Will it make a difference to them? She might please help me give some comfort to families at home.

Absolutely. This process is all about families, children and ensuring that we have appropriate and faster access to the most appropriate clinical decisions. This is also in response to the fact that 40% of assessments, of children who are going through assessments of need, are being diagnosed as autistic. As a result of that, through five years of collaboration, hard work and clinical expertise, this protocol has been designed as part of the response to that. That is not just in Ireland. The OECD finds that there has been, overall, almost a 10% increase in autistic presentations. This is to support that but to clarify, it is totally different, distinct and independent from the assessments of need process and there is no change to anybody's statutory right to an assessment of need. What we are trying to do here is provide a quicker and clearer access pathway through our existing services, whether it is primary care, CDNTs or CAMHS teams, for people who are presenting as potentially autistic. We have three tiers as part of that protocol.