BBC Spotlight programme reveals shocking lack of respite provision for families of autistic children and young people in Northern Ireland

The programme entitled, I am Not OK, presented by Tara Mills, features mothers who reveal the challenges of living with their sons with autism, who are being violent towards them. They tell Tara they feel judged and blamed by the system that is meant to protect them and feel there is no safety net.

The show highlights how 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.

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 OK’, 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."

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.

Ms Stewart added: “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 10 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.”

Julie, who is mum to Theo, 11, who is autistic and has ADHD, severe learning difficulties and pica (meaning he eats or craves non-edible items), also featured on the Spotlight programme, said: “Due to the lack of appropriate support services over the years, we have not been able to recharge and regulate ourselves so that we are able to meet Theo’s very high support needs and his sister’s needs.

“Theo has struggled in every setting he has been to, with the majority of places withdrawing their supports because they found meeting his needs too difficult. We have been running on empty for a long time now and fear we can no longer continue as we are. We feel that planning and funding for learning disability services for the children with the highest support needs has been non-existent. Our children, mostly non-speaking and not seen often in public because of their challenges, have been at the bottom of the pile when it comes to support from the very services that are meant to help them.”

Laura, whose son Eoin, 16, is autistic and has severe learning difficulties, ADHD, pica, epilepsy and is non- speaking, reveals how the family has been without respite/short breaks since the pandemic hit in 2019.

“At a time when Eoin’s behaviours have become even more complex and demanding, the complete lack of proper respite has been one of the worst things that could have happened to us as a family.

"Children like Eoin who are the ones, along with their families, most needing respite are then left high and dry by Belfast Trust once again.

“Emotional breakdowns, elevated daily stress levels, physical injuries, damage to items and property, no downtime, no respite, psychological impact of being attacked by your child, guilt in not being able to help Eoin regulate and get through things… these are some of the issues we as a family have faced on a daily basis.

Shirelle Stewart 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.

To find out more about our Forgotten Voices campaign and to sign the National Autistic Society’s petition, visit: https://act.autism.org.uk/page/155586/petition/1

*I am Not OK is on BBC One NI, tonight, Tuesday, September 24, at 10.40pm