A REFERRAL FOR a nine-year-old autistic girl was refused by CAMHS last year with a consultant said that it is “common for children with disabilities to have meltdowns and say they don’t want to be here” after they reported her suicidal ideation.
The girl’s GP sent a letter to the CAMHS team last year, explaining that the child had become “increasingly anxious” in the previous month, and that she was at that time having “frequent meltdowns” and sometimes lashed out physically at her sister or father.
The GP further wrote that the girl’s mother had described her daughter “as saying she wishes she was dead and that she doesn’t want to be here”.
The referral noted that the girl was also being supported by a HSE Child Disability Network Team (CDNT), and that the CDNT’s psychologist had recommended she be referred back to CAMHS.
In reply to the GP referral made last year, a consultant with CAMHS said that the girl did not appear to have a “moderate to severe mental illness” and therefore the referral would not be accepted.
“It is common for children with disabilities to have meltdowns and [say] that they do not want to be here. These are emotional and behavioural in ASD and we do not treat these,” the consultant wrote.
The consultant further wrote that if disability services wished to refer the girl for “pharmacological treatment as they cannot manage this girl they can of course write a letter”.
“I am happy to prescribe for children with disabilities but only when all supports/ training etc, have been put in place by her assigned service,” the consultant added.
Eilish, the mother of the girl, who has spoken to The Journal, explained that her daughter, Anna, was accepted by CAMHS in 2019 and had several sessions with a social worker. (Both names have been changed for the purposes of this article, by agreement with the girl’s mother).
Eilish said she was informed by CAMHS that her daughter’s autism was the cause of her distress, and she would be better supported by disability services.
Eilish has had over the phone support from the local CDNT since then, but they do not have the resources to provide one-to-one sessions for Anna.
The HSE told The Journal that it deeply regrets that children have been impacted by CAMHS wait times. It said that sometimes referrals are refused due to a need for additional information from a GP. The HSE spokesperson added that some children with autism do get input from CAMHS.
Eilish is one of the parents who have joined a group called ‘Families for Reform’ which is lobbying the HSE and the Government to enact changes in how CAMHS operates, and in particular to remove the barriers children with autism are facing in accessing the service.
CAMHS operational guidelines set out that admission to services can be refused to autistic children “where there is an absence of a moderate to severe mental disorder”.
Where there is such a disorder, it is the role of CAMHS to provide “appropriate multidisciplinary mental health assessment and treatment”.
The deputy chief executive of the Irish Society for Autism, Tarra Matthews, has said that autistic children are “clearly being failed” by the health system.
“Autistic people should be treated equally and a diagnosis of autism should not preclude any person from accessing essential services that others can access,” she said.
Some of the families in the ‘Families for Reform’ campaign group have flown to Spain so their children can see mental health professionals due to a lack of access to services at home.
The group, which was set up earlier this year, has 640 members. A survey of the parents in the group showed that 70% are seeking support for a child for ADHD, 56% for anxiety, 21% for depression, 11% for OCD, and 9% for an eating disorder.
‘Autistic children can have mental health issues too’
Eilish is a mother to three girls, all aged under 12. She only ever intended to stay at home to look after her children for five years, but the level of care that her middle child Anna needs has meant that she hasn’t been able to take up other work.
“I first started to realise she had autism when she was between 2 and 3. She wasn’t speaking or interacting the way my other daughter had.
“When I took her to the doctor, I was told that meltdowns are normal for toddlers. But then she had a preschool teacher who noticed that she was playing on her own more so than in groups, who referred her to be assessed,” Eilish said.
In 2019, Anna was diagnosed with autism. Her mum said that she told healthcare professionals working with Anna that she was worried her daughter was experiencing anxiety as well, but was told that this was normal.
“She was five years old when she first told me she didn’t want to be here anymore. I’ll never forget it. What really upset me was that she meant it. She had a massive meltdown, she was lying exhausted in my arms, and she felt like she couldn’t cope,” Eilish said.
She was getting support from local disability support services over the phone. Anna wasn’t referred to CAMHS straight away, but was assessed by a team later in 2019 and remained with the service until August 2020.
“We had a few more ‘I don’t want to be here anymore’ episodes, and then during Covid, things got worse.
“I was in the kitchen one day, when my older daughter ran in, and said that Anna had jumped in the river at the rear of our garden, and said she was going to drown herself. I ran and got her straight away. The river is quite shallow, but the most worrying aspect was what Anna was saying and how she was feeling.
“I knew we needed help then. I was so worried about her impulse control. Her anxiety over the slightest change of routine was taking over all of our lives,” Eilish explained.
“We’d gone from ideation to active attempts. I was terrified. I couldn’t even leave her in the bath alone. After that they said ‘okay’. She was seen and assessed by CAMHS, and had four sessions of play therapy with a social worker,” Eilish said.
Anna was discharged from CAMHS services at age 7.
“It was the pandemic, so I wasn’t getting much help. I tried to fight against her being discharged, but she was anyway. When school was back, I’d spend up to an hour and a half outside convincing her to go in.
“She was talking about not wanting to be here anymore again last August, so I went back to our GP and they sent a referral letter to CAMHS.”
She said she was shocked and upset by the reply.
Eilish said that though Anna is not experiencing suicidal ideation at the moment, she gets upset daily, sometimes having meltdowns, and sometimes “freezing up” and not engaging with anyone.
“I am scared about what life will be like for her as an adult. She’s on a waiting list to see a therapist through disability support services. In the meantime, as a family, our lives revolve around helping her to manage. We walk on eggshells trying not to set her off.
“I think there is a complete lack of understanding that children can be autistic and have mental health issues too,” Eilish said.
Fighting to access CAMHS residential care
Alan is 17-years-old, and he loves to learn about science. Any kind will do, he isn’t fussy, but he does have a particular interest in red blood cells – he can tell you almost everything there is to know about them.
Alan is autistic, and he also experiences anxiety, and struggles with his mental health. He lives with his mum Joan. It is just the two of them.
His mum – who recently gave up her florist shop to look after him full time – says that she has faced a “constant battle” to get him access to mental health services, despite his struggles with self harm, and a suicide attempt when he was 13 years old.
“I fought against my child being discharged from hospital after he took an overdose at 13-years-old, and recently I have fought against him being discharged from CAMHS altogether,” Joan said. (The Journal has agreed not to use Joan or Alan’s real names).
When Alan was younger, Joan noticed that he could be hyperactive, but she didn’t think he needed to be assessed for autism.
“I didn’t fully understand it, and I thought that getting a diagnosis for your child meant they would be medicated, which I didn’t want. Plus, I didn’t have anything to compare him to. He was just my Alan, and it was always just me and him, and our two cats.”
After Alan’s 10th birthday she noticed a major change in his behaviour. He had been outgoing and active with many hobbies before, but he became quiet and insular, spending increasing amounts of time alone in his room, and in bed.
“I thought, ‘who is this quiet lad, and where has my boy gone?’” Joan said.
Alan started to struggle with being in the same room as other people. Sensory issues meant that he needed to wear noise reducing headphones to school, and the sound of his mum breathing became triggering for him. He also started to have issues with eating, which meant that he was having only one meal a day most of the time, and he wouldn’t eat in public.
“After he turned 13, things got worse. He was hitting himself and cutting himself. He had already been refused once by CAMHS in the previous couple of years, but they did take him on in 2019,” Joan said.
The CAMHS team assessed Alan and diagnosed him with autism, and some OCD traits. He was prescribed prozac tablets.
“In October of that year it got really bad, he couldn’t be in the same room as me. He locked himself in at one point and my brother had to come and help me get him to come out. I wasn’t sleeping, I was so worried about what he might do.”
In the early months of 2020, after 10 weeks of Alan being non-verbal, he attempted to take his own life by overdose.
His mum rushed him to hospital, and insisted that he be discharged to a CAMHS residential unit.
“Alan is a very smart boy, he had researched everything by himself, and he knew he was struggling, and he wanted to go to the residential unit. He felt like he wasn’t coping at home. His self harming had gotten to the stage where I felt I could not keep him safe either,” Joan said.
Joan said that the hospital wanted to discharge Alan, and his CAMHS doctor was not accepting that he should be given a bed in the residential centre.
“I felt that I was pushed to take him home with me, but I was insisting that I wouldn’t.
“On the third day, the CAMHS team did a long Zoom call with me, and decided to admit Alan to residential on an urgent basis. He was meant to stay for just one week, but he was there for a month,” Joan said.
When Alan left residential, he returned home. When he turned 16, Joan was informed that he was going to be discharged from CAMHS, but she pushed back against the decision.
“When he first came home, he was seeing a therapist every week, and that helped him manage his anxiety. It got reduced down, and down, until it was every six weeks and then the therapist left the service, so no one has seen him in seven-and-a-half weeks at this stage.
“The message I get repeatedly is that my child doesn’t have mental health issues, that it’s his autism. I know my child has mental health issues. He wears two sets of clothes. He washes his hands repeatedly, he can spend five hours in the bathroom in a night.
“The Community Disability Network Team – who have been very supportive – has said they cannot work with him fully until he has become regulated on the medication CAMHS has prescribed him, which I understand. But who do I go to?”
Joan says she has asked for Alan to be referred to adult mental health services, because she knows it is roughly a 6-10 month wait. She said she’s been told by Alan’s doctor that the referral will be made two months before his birthday early next year.
“I’ll keep fighting for him, because I am his voice, but I’m worried about what the future holds. When I joined Families For Reform, it was nice to talk to other parents who have been through what I have, but it’s also like, look at all these kids who aren’t getting the help they need,” Joan said.
Families for Reform representatives have appeared before the Committee on Children, Equality, Disability, Integration and Youth.
The parents told the politicians that while the HSE denies that there is any discrimination against autistic children, they strongly believe that the exclusionary clause in the CAMHS operational guidelines in respect of autistic children “is often being used against them to not offer supports or a differential diagnosis”.
They said that based on their experiences, rather than an autistic child being diagnosed with an anxiety disorder or self-harm and suicidal ideation being acknowledged, “everything is linked back to autism so as not to have to offer supports”.
The HSE told The Journal it ”deeply regrets any time where services are not to the standard required of our patients or their family and we fully acknowledge the impact on children and young people who are waiting to access CAMHS.”
It said that an increased number of children are presenting with suicidal ideation and eating disorders, and other acute mental health difficulties, and that they have to be prioritised on the waiting list.
A spokesperson for the service added that some children with autism do get input from CAMHS.
Claire, who is part of the Snowflakes Autism Support Group in North County Dublin, said that she often speaks to parents at group meetings who are looking for help after their child has been refused by CAMHS.
The Swords woman runs a parent support meeting each month, as well as play sessions for children up to eight years old twice a month.
“We see parents who are at the end of their rope, because their local CDNT is understaffed to the point where there is no one to pick up the phone when they call, and their child isn’t being seen by CAMHS either. It’s heartbreaking that children are being excluded from mental health supports because of their diagnosis.
“In some cases these children aren’t sleeping, eating, or going to school, and some are self-harming, so they are clearly in a state of distress.
Claire says that the lack of disability support services for autistic children can, in her experience, often lead to them experiencing psychological distress and mental health issues.
She said this was the case for her own daughter Hannah, who was diagnosed with autism at the age of 5, and is now 7 years old.
“Hannah became non-verbal at the age of 3, and lost all of her words. It was like a fog of autism had come down on her, and she couldn’t tell us when she was hungry, scared, or tired. She wasn’t being seen by an occupational therapist, or a speech and language therapist.”
She said her daughter was in need of psychological care at that time.
“Once we got a diagnosis, no one in services was contacting us or calling back. Once we eventually did get access to a speech and language therapist, and other supports for Hannah, things improved,” Claire said.
She said it is also the case that mental health problems are not being diagnosed in some autistic children because they are not being regularly seen or assessed by any mental health professionals.
“Staffing is critically low in disability services. Even if parents try to go to a private clinic, they will face a significant wait time. In North County Dublin, the private services are completely oversubscribed, and some have closed off their waiting lists.
“It doesn’t help that the HSE is actually outsourcing the Assessment of Needs for children to private clinics. It means that post-diagnosis, when you can’t get help within the health system, it’s also incredibly hard to get it through the private sector,” Claire said.
Claire said that Snowflakes is also in contact girls who had not been diagnosed with autism until they experienced a mental health crisis in their teens.
“If we had better training around autism for teachers and GPs, and joined up mental health and disabilities services, I think a lot of children would be be diagnosed younger,”she said.
Claire herself was diagnosed with autism last month, after going for her first assessment as an adult.
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