Wairarapa site for mental health services. PHOTO/HELEN HOLT
Parents of neurodiverse children say they’ve been rejected by mental health services when they had nowhere else to turn.
Parents said their children were turned away from the Child Adolescent Mental Health Service [Camhs], despite having mental health concerns including anxiety, self-harm and suicidal tendencies.
Neurodiversity includes autism spectrum disorder, ADHD [attention deficit hyperactive disorder], obsessive-compulsive disorder and dyslexia.
Camhs is based in Wairarapa and is run by Te Whatu Ora – Health NZ.
If the child was approved, parents said it was a three-year wait for an appointment, but the file was closed without warning. They said Camhs blamed parents for the child’s behaviour and refused to diagnose children with autism or ADHD.
John*, whose child has autism, said their experience was awful, where a doctor repeatedly compared their child with a caveman or a monkey.
“When I said what my child could do, the doctor said no they can’t. He said ‘you can put a monkey in a room with a typewriter and even they will eventually get it right’.”
He said his child was taken off a micronutrient trial, despite being approved, because the staff wanted to do a paper study on the trial.
“They thought my child was too severely autistic to show good results and they didn’t want bad results.”
The service put their child on medication, but when the child had side effects, no one was available to advise the parents on what to do.
John said their child was put on multiple different medications by Camhs, before the child was removed from the list without notice.
“When I tried to make appointments, I no longer could. With my other child, who is also autistic with anxiety, they wanted us to bring them in and talk about them in from of them. We said that’s not right and we got kicked off the books.”
Another parent, Jane*, said Camhs let them down when they absolutely needed it.
“My child started refusing to go to school. They were having meltdowns, life was very hard at that point. We were at a loss as to what we were going to do.”
Jane’s child got a referral from Te Hauora to Camhs, which was denied, but Autism Wairarapa advocated for the family to help secure an appointment.
“I was under the impression we would see a psychiatrist or psychologist, but we were presented with a nurse and a social worker. I told them what had been going on and they basically said they couldn’t help us.”
Jane’s child was eventually diagnosed with autism, but that’s where the help stopped.
“They organised a professionals meeting, which as parents we were told not to attend. The next week we got a call from the teacher who told us that Camhs were pulling the file. They had told everyone but the parents.”
“We were about to put our child on medication – even though we were worried about side effects – just to keep them in Camhs because they were about to close the file.”
Jane said there was a serious lack of compassion.
“I’ve cried so many times because of the stress, but the nurse told me I should be grateful because the service usually rejects autistic children.
“My child refuses to leave the house, so I’ve been in lockdown since before covid.”
Brian*, whose child has Tourette’s, ADHD and OCD, said Camhs was a diabolical waste of time.
“My child was referred to Camhs by the paediatrician after they started self-harming.
“They automatically didn’t want to be [at Camhs], but the nurse took them into a separate room, and asked a few questions about their self-harming, which he owed to their ticks.
“They tried climbing out of a second-storey window, and the nurse still didn’t think there was anything wrong.”
He said the experience was gutting.
“When my child was seven, the doctors said they were just a normal kid and sent me on a parenting course.
“As parents we sacrificed holidays and our careers. If the school rings us, we need to be able to leave at the drop of a hat.”
Lea*, a mother of multiple neurodiverse children said her experience made her not want to send any more children to the service.
“My child attempted suicide. Two days later we went to Camhs, and the staff refused to believe there was anything wrong.
“They said ‘look, they’re dressed perfectly’, never mind that they hadn’t showered for days. The nurse wasn’t standing close enough to smell it.”
Autism Wairarapa said their families frequently struggled to find support from Camhs.
“Their cases are declined for service or the cases are closed quickly. Some of our families will not engage with Camhs as they have experienced or heard that the Camhs service is inaccessible to neurodivergent youth.”
Mental health, addiction and intellectual disability service executive director Karla Bergquist said there were two children with known autism spectrum disorder in Camhs Wairarapa’s books.
“Young people with known ASD can be referred to Camhs, and are offered the same choice and partnership approach as non-ASD referrals. Treatment of all young people is tailored to their individual needs.
“Young people accessing our services are offered appropriate support for neurodivergent conditions. When it is determined that another agency or service is better placed to provide assessment and care, clients are referred to those agencies or services.”
She said young people with known autism who needed additional behaviour support would be referred to Needs Assessment and Service Co-ordination organisation FOCUS, and with a request referred to behaviour support service Explore.
She said the staff tailored treatments to their patients’ individual needs.
“It is standard practice to fully involve parents or carers in discharge and closing of files.”
Bergquist said they would welcome all feedback from parents who had interacted with the service.
“We are sorry that young people and their whanau have had these experiences when accessing our services, and invite them to contact us directly to discuss their concerns.”
Bergquist said she wasn’t aware of anyone who would waited three years for an appointment.
“While waits for assessment and treatment are a challenge nationwide, Wairarapa works hard to see patients in an appropriate timeframe.”
- * Names were changed to protect identities.
