Parents of autistic children left 'invalidated, unheard and patronised' by Camhs, report finds
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Seven in 10 parents of autistic children say that their child’s diagnosis has negatively impacted their ability to access the HSE’s Child and Adolescent Mental Health Services (Camhs), according to a new report.
More than 70% of the parents consulted said that their child’s mental health had deteriorated while they were on a Camhs waiting list.
The report, 'Experiences of Camhs: A Family Perspective', will be launched in Dublin by advocacy grouping Families for Reform of Camhs — a group which has attracted 1,200 members since its formation in May 2023 — on Thursday.
It represents the results of a survey undertaken in April of 736 respondents, with the majority of those responses relating to children with autism.
The report details that families experience difficulty at every stage of the Camhs process, from referral to discharge, with access to the service generally only being granted once a child had become critically unwell.
It further notes many respondents perceive “a severe lack of accountability or anywhere to turn to when services were not being provided or when there was an issue with the approach, support, or lack of support being provided”.
The testimony of the parents of autistic children seeking to access the service was dominated by negative experiences, the report said, with 54% of those parents saying their child’s diagnosis had been used to try and discharge them.
In terms of referrals being accepted by Camhs, autistic children were significantly less likely to be accepted upon first referral as opposed to those who are not autistic. Some of the children detailed in the survey had been referred five times or more to Camhs before being accepted.
Some 42% of parents separately reported their autistic child as having been turned away from Camhs when experiencing suicidal ideation or intent as opposed to children who are not autistic.
One respondent to the survey said their child was “passed back and forth between services”, having been deemed as “too autistic for one and too anxious for the other”.
A large proportion of respondents were of children with ADHD, with a third having to wait more than 18 months to have a referral accepted, while more than twice as many children living with the condition were made to wait at least 18 months as opposed to children who did not have ADHD.
More than three quarters of parents of children with ADHD had sought private healthcare for their child while waiting for Camhs, the report states, with one parent noting the “stress, worry, and sleepless nights” spent worrying about being able to afford private care.
One testimony from a parent describing the impact on their family of the struggle to access Camhs states it was “hard enough to support our child as a parent without having to fight for help for them as well, at every turn being invalidated, unheard and patronised”.
Another relates feeling “helpless as a parent”.
“I’m broken and my family is broken,” said another.
The HSE said in response to the the report that it it "sorry to those young people and families who have had a poor experience in trying to access services".
It said it has made CAMHS and youth mental health service improvement a priority in recent years, pointing to the HSE Child and Youth Mental Health Office (CYMHO) being established in October 2023.
"A key objective of the HSE’s CYMHO is to improve access and address CAMHS waiting lists. This includes various measures such as increased collaboration with Primary Care and Disability Services, stronger links with the voluntary and NGO sector and greater use of digital mental health innovations," it said.