Published date:
Initial assessment reveals a pattern of failings: delay, distress, fragmentation and exclusion from the public services intended to support autistic people
Northern Ireland’s Independent Autism Reviewer, Ema Cubitt, has published her first Annual Report.
Although an estimated 35,000+ people in Northern Ireland identify as autistic (2021 NI Census), autism extends far beyond what is formally diagnosed or recorded.
Although Northern Ireland has had autism legislation in place for 15 years, there has been limited examination of how government departments are measuring up against the legislation, or whether the Northern Ireland Autism Strategy is delivering any meaningful change for the autistic population.
Ema Cubitt was appointed as the first Independent Autism Reviewer for Northern Ireland in 2024. The role is unique across the UK and Ireland.
The Independent Autism Reviewer’s first Annual Report has outlined the urgent need for greater accountability of Northern Ireland’s public services, to ensure they are fit to meet the needs of autistic people, families and carers; it outlines some of the major life challenges faced by autistic families, revealed through engagement with the autistic community; and it lays out the Autism Reviewer’s target areas of focus for the coming year.
Some of the high profile issues examined include:
restraint and restrictive interventions for autistic people
barriers to accessing education
the fragility of provision of respite and short-break provision for autistic people
the disconnected support for autistic children transitioning into adulthood
Speaking at the Stormont launch of her first Annual Report, Ema Cubitt said,
Northern Ireland has had a statutory framework for autism and a cross-government strategy for over a decade, and people here had high expectations for what it would deliver. In my first year in office, what I have heard consistently and clearly, is that meaningful change is not being delivered in practice.
The core of my role lies in scrutiny. This means looking at how law, policy, funding and services operate across the system that shape daily life – including health, education, transport and justice. What I have seen is not a small number of isolated failings, but a pattern in which responsibilities don’t join up, information is not clear enough, and accountability is too easily diluted across organisational boundaries.
What I’ve heard is that autistic people and families are left to do the work of connecting systems that should already be joined up. The result is delay, distress, fragmentation and, at times, exclusion from the very services which are supposed to be built around them.
Confidence in public systems has been significantly eroded and rebuilding it will require systems that work in a way that is clear, consistent and evident in practice.
The Independent Autism Reviewer’s scrutiny role is to examine how fit for purpose law, policy, funding and services are for autistic people, and to bring that into clear view for the Assembly and the public.
Ema Cubitt concluded,
Autism and special educational needs are being discussed frequently in Stormont, and rightly so. Autism is not only a health issue, or an education issue. Where there are people, there are autistic people. This is everyone’s business.
In the coming year, through my scrutiny role, I will be focusing on translating talk into action, building understanding of how we can do things differently and how government departments can become more accountable. We have the frameworks in place to deliver meaningful change, but seizing this opportunity will require clear leadership, shared responsibility and the courage to act differently.
What is clear is that the status quo is failing too many people and this must now change.
The full report is available here: Annual Report - Sept 24 - Mar 26 | Independent Autism Reviewer for Northern Ireland