Autism: ‘My life has become much worse’ says mum of autistic boy

The mother of a boy with autism and a severe learning disability fears she will have to hand over care of her son to social services because of a lack of support.

Claire Miller’s son Danny’s condition often leads to unintentional, challenging behaviour that can cause harm to himself and others.

“I no longer feel safe being alone with my son and it’s not his fault,” she said.

Ms Miller, along with three other mothers, was featured in BBC Spotlight’s film I Am Not Okay, which was broadcast in September 2024.

They allowed cameras to capture and show often distressing scenes in their homes.

After the film was broadcast, Health Minister Mike Nesbitt announced a multi-million pound funding package but the women feel the money has yet to reach them.

They gave evidence to the Northern Ireland Assembly Health Committee on Tuesday and health trust chiefs will answer questions about where the money has been spent at Stormont later.

The families had hoped the funding would reinstate short-break respite, where their children would spend an overnight in a trust facility to give them a break.

Those breaks had stopped during the Covid pandemic.

But that hasn’t been the case for the Miller family – in fact, Ms Miller said her life has become much worse since the film was broadcast.

She recounts being attacked by her son in February.

“Three weeks ago I was getting Danny ready and I looked at the clock and it was a quarter past eight.

“The next thing I remember it was after 12 and I was in the back of an ambulance.”

Ms Miller can’t remember what happened in the intervening hours. She was hospitalised for two days with severe concussion.

She’s only been able to fill in the blanks thanks to her mum who was in the house at the time looking after Ms Miller’s daughter.

“He pulled out a significant amount of my hair and I took some really bad knocks to the head.”

She still has memory loss and her speech is noticeably slower.

“That day I was supposed to be having a meeting with the trust with one of the other mums from the film so I wasn’t able to attend which is ironic.

“I’ve been completely broken by this.”

Carly Braiden, one of the other mothers who took part in the film, has also found her son’s Rudi’s behaviour has deteriorated.

“He’s not able to go to school at the minute except for a day here and there. He’s considered a danger to himself and others.

“But that has a knock-on effect because he has no routine and that makes his mental and physical health worse at home.”

This has led to serious incidents where they live, including one in which the police had to be called.

“In the end, there were 14 professionals, including police, outside my house.

“There was nowhere for him to go so they suggested Hydebank (prison for young offenders).

“I thought this was ridiculous so I went and got a bag and packed his pull-ups – and I think they realised then it was never going to work for an autistic non-verbal child.”

In November, Nesbitt announced £2m immediately plus recurrent funding of £13m to try to offer improved services.

He said that, perversely, finding the money was the easy part.

“It’s the buildings and the workforce that are tricky.”

He met the four mothers last week and afterwards called for a joint meeting with the chief executives of the South Eastern and Belfast health trusts.

“One of the mums had felt she was badly treated and, as a constituency MLA, I’ve put in a complaint about that and it’s working through the system.

“What I discovered in the meeting was that it wasn’t a one-off for one of the mums to feel she wasn’t treated with due sensitivity.

“So the idea is to acknowledge that and to ensure senior officials in two of the trusts are aware that mums feel that way.”

The South Eastern Trust, which is responsible for health services in the area Ms Miller and Ms Braiden live, said it welcomed the extra funding and that it would help it to provide a range of early intervention, prevention and support services.

It said there are 13 children with highly complex needs being supported by the trust in the community and any number of those children could require a placement should their family circumstances change.

Laura Flannigan’s son Eoin is a year older since the BBC started making the film, yet she said they have been “told to hang on and different avenues have been looked at – but nothing has come of it”.

“We’re sitting here with no concrete plans.”

That’s echoed by Julie Tipping whose son Theo still hasn’t had any overnight breaks at a Belfast Trust facility since before the film was broadcast.

“I know things can’t happen quickly but when you’re living with it day-to-day and you’re not sure when it’s going to happen it’s really hard to take.”

The Belfast Health Trust has yet to answer our request for comment.

When giving evidence to the health committee, the four mothers were supported by the National Autistic Society – its Northern Ireland director, Shirelle Stewart, said the committee “was very moved by the experiences the families shared and expressed their disappointment that no real changes have taken place since the film was broadcast”.

“They said they will be asking the health trusts why this is the case.”