‘He wasn’t a criminal, he was just a child who was not well’
Internal records chart a mother’s exhausting fight to get appropriate care for her child with autism, writes Maeve Sheehan
SANDRA Mulhall watched with a sinking heart as her son was driven away in the back of a Garda van. He wasn’t in trouble, he hadn’t even broken the law. His crime was being a 14-year-old child with autism in a county that didn’t have the adequate emergency resources to care for him.
It was a Tuesday in March last year. Days earlier, he had suffered one of his “outbursts”. It was over something so minor that Sandra can’t recall what had sparked it. They were in a bedroom upstairs when he grabbed his mother in a headlock and refused to let her go.
At 5ft 10in and a large build, even at 14 he easily overpowered her. She could not move, but it was important that she stayed calm. “You do whatever you can to get him to calm down,” she said. Eventually, he released her.
Sandra secured an appointment days later at Slaney House, the overburdened paediatric psychiatry service in an old, outdated building in Wexford that campaigners have long argued is not fit for purpose.
There, in an episode of acute distress, John attempted to throw himself over the bannisters. That was when gardai were called.
“They had no choice,” said Sandra. “They would have had to call the gardai to restrain him, to keep him safe.
“They put him in the back of the van and brought him down to the adult psychiatric ward, a child who was not well,” she said. “He wasn’t a criminal, he was a sick boy.”
Sandra’s son, whom she calls John to protect his identity, spent 41 days in an adult psychiatry ward of Waterford University Hospital, an environment that is widely accepted as being inappropriate for children and which the Mental Health Commission has warned could breach their human rights.
Records Sandra obtained under Freedom of Information document not only a mother’s exhausting fight for treatment for her son, but the chronic pressures on the mental health and disability services for children in the south east.
Children with mental health issues are referred to the Child and Adolescent Mental Health Services (CAMHS) and those with autism usually come under the care of the Disability Services. A HSE spokesperson said that both areas “collaborate in the best interest of each child”.
Wexford is one of many areas in the country where pressure on resources means that too many children with autism are being referred to the overburdened psychiatric service for children. Some, such as Sandra’s son, end up in adult psychiatry services because there is nowhere else for them to go.
She claims that only after repeated warnings about his worsening outbursts, only after he attempted to stab his mother did he finally, eventually, start to receive the therapeutic interventions he needed. John spent his 41 days on the adult ward largely confined to a small single bedroom, with just enough room for a bed, under the constant eye of nursing staff.
His paediatric psychiatrist Dr Kieran Moore believed he should not have been there in the first place, according to correspondence released to Sandra. He wrote that the boy had been admitted to the adult department of psychiatry at Waterford hospital due to “homicidal intent and action” and highlighted the risks to the boy’s mother.
However, he wrote that the main reasons for the boy’s behaviour related to “the manifestation of his autism” and he found “no evidence of “psychosis or mood disorder”. He urged instead that the boy be “prioritised for emergency treatment by the autism team (it doesn’t get more serious than this)”.
Dr Moore wrote that the boy needed “psychology, occupational therapy, speech and language therapy” and accommodation with support for his mother on his discharge from hospital. “The real issue relates to reducing his risk of homicidality due to his autism as his theory of mind is almost non-existent,” he wrote.
The HSE’s psychology services were also concerned for the child being in an adult psychiatric ward. “I guess the issue is downgrading the risk in order to allow him to go home,” wrote one staff member to another.
After 41 days, John was discharged to Sandra’s care but this time with 24/7 support from two agency care workers contracted by the HSE.
Sandra was delighted to have him home but claimed he was still not getting the range of occupational therapy, language therapy and other therapies to help him manage his behaviour. Anything could trigger an outburst, she said, “and he didn’t have the treatment that he needed to help him not have the outbursts, to manage himself emotionally”.
The records show John’s behaviour declined and how Sandra struggled to get the support she needed.
In July, the agency that provided John’s support workers wrote to the HSE to warn that boy, his family and staff were in danger because of the lack of supports. The letter noted a “decline in the child’s ability to control his outbursts and manage his behaviour” and that support workers were being put at “serious risk”.
The letter continued that it was “well documented” that the boy’s mother, Sandra, “was the target of many of these outbursts” and one of the support workers regarded his biggest challenge as “protecting her, even at the cost of being bitten, spat at and threatened”.
“Numerous calls asking for help were made to different departments of the HSE over the past two weeks [by Sandra Mulhall] as she was aware that a major behavioural outburst was imminent but was unable to access any support,” the letter continued.
Following one particular incident, the letter said, “no practical or physical support was made available” to the family, apart from that provided by the agency.
The correspondence did result in further interventions in John’s case. But by August, a note on his file recorded how he said he was having “visions about being held down by gardai”.
Shortly before last Christmas, he took a kitchen knife, put it to his own wrists and to his mother’s head, threatening to stab her. It was a harrowing and frightening episode for all concerned.
“He was going to stab me in the head. The support worker managed to text a friend to call the guards and managed to get the knife off him,” said Sandra. By the time gardai came, calm had been restored. But the next morning, Sandra said, the agency withdrew its support staff because of the risks. She was on her own again.
A day or two later, John was admitted for the second time to the adult psychiatry department at Waterford hospital. When he was discharged a month later, he did not go home, but went into the care of the HSE. He has been living in a series of rented, private homes, under 24-hour care from support workers. His mother said he has recently started the therapies he should have had last year.
At the age of 16, he lives apart from his family, and although Sandra appreciates that this is part of his care, she finds the separation “heart-breaking”. She visits him several days a week. “The first thing he will always do is give me the biggest hug, the biggest hug. And you know, when I saw him there yesterday, he looked like he had been crying. His eyes were bloodshot. Because he wants to come home,” she said.
His future is uncertain. “We don’t know what his future is going to be like. He is very kind, he is loving. He is a wonderful young lad. I believe that he is very capable but he just needs the right help that he should have gotten a yearand-a-half ago.”
The family’s struggles are not over. Sandra has had a lot to bear. She has cared for John and his sister alone since her husband died of a heart attack in 2008. Both she and her daughter are in counselling. She is still fighting for an education for her son, who attended school right up until he was hospitalised last year,.
She and other parents founded the support group, Wexford Warriors, to campaign to resource Child and Adolescent Mental Health Services and children’s disability services. Their concerns were underlined by Dr Kieran Moore, who made headlines when he resigned from CAMHS in Wexford during the summer, saying the service is “untenable and unsafe”. He told his local radio station that children who have autism were “not being seen by the autism team”.
Sandra’s message is simple: resource services for children. “Why do families have to be brought to the brink — I mean the absolute brink — before anything is done?”
The HSE said it cannot comment directly on the case but wanted to stress that “there has been and continues to be extensive engagement and liaison” between HSE services and the family. “We are working at all times to provide the best possible care and support to this boy and his family. We share this aim with this family and are continuing to seek to provide services that are in his best interest,” the statement said.
‘When I saw him there, he looked like he had been crying’ ‘He is very kind, he is loving. He is a wonderful young lad’