Since 2020 I have worked with the ONSIDE project supporting disabled people who are experiencing social isolation. I am also the mum of a young autistic adult who faces similar challenges to social opportunities that our ONSIDE participants face. I feel it is important to shine a light on how difficult it is for autistic people to access services and how this lack of support impacts on every area of their life. 

The recent passing of the Autism Amendment Bill recognises the damage caused by the lack of services for autistic children and adults, and the difficulties they face transitioning into adult services. The Bill is much needed, and the lobbying prior to the Bill was really useful in starting a public conversation about Autism and the lack of services for young adults but it is by no means the ‘solution’.  There is lots more work to be done by Government, the Trusts, outreach services and the public.

The current postcode lottery regarding services for those with autism and the ongoing struggle to secure suitable support has a devastating impact on autistic people and young adults. As a result, they are more likely to experience social isolation, poor education outcomes, higher unemployment and poor mental health.

As a mum trying to navigate this system, and from my current work, I know how limited opportunities and services are. My own lived experience is that what patchy and limited services are available as a child slowly drop off through adolescence to almost non-existent as an adult. I feel it is important to keep highlighting the struggles faced by all disabled children and adults trying to access support and demonstrate the potential they have if they have the right support available.

Studies suggest that approximately one half to two thirds of young adults on the autism spectrum had no close friendships, of those who identified as having friends 38.6% were likely to never see friends, 47.2% never get called by friends and 48.1% were never invited to activities (Ormond, Shattuck, Coer, Sterzing and Anderson, 2013).

A lack of social peer support can have far reaching consequences – young adults with autism can develop poor social skills which limits employment opportunities due to a lack of confidence and lack of experience in social situations and poor educational outcomes.

Added to this are poorer health outcomes with studies showing that peer discussions around health can be just as important as access to traditional healthcare particularly when it comes to personal healthcare (Pownall, Wilson and Jahoda, 2020).

The ONSIDE project is available to 16+, but for the younger age group and particularly with the stereotype of autistic people being more technically able it may seem the project is not suitable for them, but digital access and digital skills are very different.  The combination of tailored training, covering social media, online safety, accessing health and wellbeing,  combined with the 1-2-1 support to help find and access local services and social opportunities has been life changing for many participants. Many of our younger participants reported improved confidence and increased ability to access support services, social interactions, education, and training.

All or our young people, regardless of their disability have the right to thrive and have access to services to support them in their life choices. My hope is the Autism Amendment Bill is a small first step for disability services in Northern Ireland to make way for a better and more equal society for all disabled people but until this happens, we must ALL have a duty to continue highlighting the inequalities faced by disabled people in Northern Ireland.

Clare Bennett is Peer Research Coordinator with the ONSIDE project.