Autistic children and young people are being failed by Northern Ireland’s health and social care system.

A powerful BBC Spotlight Special programme entitled ‘I Am Not Okay’ has exposed the acute lack of support and services for autistic people with the highest support needs and their families in Northern Ireland.  

Due to a chronic lack of places, families cannot access residential care or short breaks and some of the most vulnerable people in our society and their families have been left in crisis by a system that purports to help them.

The National Autistic Society NI has launched a new campaign, Forgotten Voices, and is calling on the First and Deputy First Minister of Northern Ireland to provide immediate access to short breaks and residential care for those families currently in crisis. 

Shirelle Stewart, Director of the National Autistic Society Northern Ireland, said: 

"Autistic children and young people with high support needs are being failed by Northern Ireland’s health and social care system. Due to a chronic lack of places, families cannot access residential care or short breaks and families are pushed to crisis point.

"As highlighted by the BBC’s Spotlight programme ‘I Am Not Okay’, those impacted include autistic children and young people many of whom do not use speech and need round-the-clock support. Without it, they might become incredibly distressed, leading to harm to themselves or others.  

"Families can be pushed to the brink, trying to fill in the gaps of support and are being denied access to short breaks because no places are available. The health and social care system should support any autistic child when they need it. But there is a comprehensive failure of the system to give these children and their families support."

Carly, who is mum to Rudy one of the young people whose family is featured in the Spotlight Programme, said:

"Respite is irreplaceable, it's priceless - the ability to do family things such as going out for meals... the chance to recharge batteries, the gift of being able to have a sound night’s sleep... the simple things that people take for granted.

"As a family, we have been emotionally, mentally and physically damaged for almost ten years by a litany of failings by the system. The system that has a duty of care to our family to provide adequate support and respite services."

Shirelle Stewart, Director of the National Autistic Society Northern Ireland, added: 

"We believe the Department of Health and the Health and Social Care Trusts are failing in their duty of care to these children, young people and their families. They have failed to plan and commission appropriate services and the most vulnerable in our society are forgotten."

The National Autistic Society NI is working alongside the families impacted by this, and has launched a petition calling on the First and Deputy First Minister to provide immediate access to short breaks and residential care for those families currently in crisis.  

In addition, the charity is campaigning for the resources needed for the commissioning of services to support autistic people with high support needs and their families such as short breaks and residential placements.  

The charity also wants a dedicated strategic taskforce to address the reforms needed to support autistic people with high support needs. 

Find out more about our Forgotten Voices campaign and to sign the National Autistic Society’s petition here.
 

Notes to editors

For more information, or to arrange interviews, please contact Shirelle Stewart  

Email: shirelle.stewart@nas.org.uk  Mobile: 07789941239.

 

About the National Autistic Society

• The National Autistic Society is the UK’s leading charity for autistic people.  
• We are here to transform lives, change attitudes and create a society that works for autistic people.  
• Since 1962, we have been campaigning for autistic people’s rights and providing support and advice to autistic people and their families.
• In 2019 the National Autistic Society NI opened its state of the art autism centre in Carryduff providing day services for autistic people with high support needs
• To find out more about the charity and autism, visit www.autism.org.uk 
• Follow the National Autistic Society’s social media accounts on Facebook, Instagram, Threads, X, LinkedIn and YouTube.

About autism 

• Autism is a lifelong disability which affects how people communicate and interact with the world. Read our guidance on how to talk and write about autism.  
• According to the NI census nearly 35,000 people in Northern Ireland are autistic 
• Autistic people have a range of strengths and challenges. For example, some autistic people also have a learning disability and may need support with daily tasks like washing, cooking or exercising. Other autistic people are in full time work and may benefit from reasonable adjustments.  

Autistic people may: 

• Face challenges with communication and social interaction 
• Be under- or over-sensitive to sounds, touch, tastes, smells, light and colours.   
• Have highly focused interests or hobbies.
• Have repetitive or restrictive behaviour.  
• Experience intense anxiety around unexpected change and social situations.   
• Experience ‘meltdowns’ or ‘shutdowns’.