Emma’s son Dennis was five when he started saying that he wanted to die because he was stupid and he hated himself.
Horrified, Emma contacted the Child and Adolescent Mental Health Service (CAMHS) to ask for help for her son, who is on a waiting list for an autism assessment.
The CAMHS team agreed. But in the end, that help consisted of a parenting course for Emma and some leaflets through the post.
“We felt angry, frustrated and desperate. If they weren’t going to help, I didn’t know where to turn,” says Emma, from County Durham.
"I was really worried about my child and I wanted a medical professional to talk to him. They made me feel it was something I had done wrong."
Mental health services for children and young people are under severe strain in the UK, with more than one million referrals a year and a surge in waiting lists.
But the crisis is even worse for autistic children, whose families say they are sometimes denied access to mental health support either because their problems are seen as part and parcel of being autistic or because CAMHS say they’re not equipped to support them.
Yet it is hard for their families to get appropriate help, says Kerrie Highcock, family development manager at the North East Autism Society (pictured below left).
“The first difficulty is getting into the system,” Kerrie says. “Children and Young People’s Services (CYPS) aren’t often commissioned to give post-diagnostic support, and don’t have the funding to deliver it.
“Then there’s diagnostic overshadowing. Things like anxiety, self-harm and obsessive compulsive disorder get missed because they’re overshadowed by the autism diagnosis.”
Even when they do get treatment, it is not always adapted for autistic people. Cognitive behavioural therapy often relies on abstract thought and the ability to identify and name feelings. This may be difficult for an autistic person who has interoception differences and alexithymia, i.e. difficulties recognising and expressing emotions.
Adam, 16, from Sunderland, had counselling sessions via CYPS for severe anxiety. His mum Emma says: “The counsellor was talking about emotional buckets, and Adam was saying ‘I don’t have a bucket, what are you talking about?’
“I told her Adam was very literal and didn’t understand what she was talking about. She replied, ‘this is what we offer’. It was stopped because he wasn’t interacting with her.”
Another mum, Rebecca, from South Shields, saw her autistic son James being prescribed Prozac aged eight after he talked about wanting to die. He’s now 13 and is still on the drug.
“Nobody wants their child to be on that type of drug long-term. But CYPS don’t seem interested in ways to help his mental health to get him off it,” Rebecca says.
Kerrie Highcock, of NEAS, wants to see all mental health support teams receive up-to-date autism training so they can understand the challenges and needs of autistic children.
"After all, if therapy fails, children lose faith in the system and end up going round in circles."
The North East and North Cumbria Integrated Care Board (NENC ICB) is the NHS body that funds trusts and organisations in the region to deliver children and young people’s services.
A spokesperson said: “We are very much aware of how important these services are to families.
“Since Covid-19 there has been a major increase in mental health needs, meaning that waiting times are longer. Children and young people’s services are receiving their highest ever levels of referrals, often with more complex needs.
“We continue to increase our spending on mental health services and are working hard to reduce waiting times and make it easier to get help.
“Our aim is to design services to meet the distinctive needs of neurodiverse children, as well as supporting their families. That means offering specialist care, based on a clear understanding of children’s needs, and provided in ways that work better for them.
“We are making real progress, but we know we need to go further. If anyone is worried about their child’s mental health, we would always encourage them to contact their GP or local mental health services at an early stage.”
Dennis is on the pathway for autism assessment. He has a 10-year-old sister who is autistic. Last year his mental health was suffering. He was saying he was stupid, that he hated himself, that he wanted to kill himself. It wasn’t anything he’d heard around us, so it was his authentic feelings. We were very concerned and distressed because he was so young.
CAMHS said they would do an assessment. It turned out to be a telephone call with me, they didn’t see Dennis at all. Two months later they said they would refer him to the single point of access team. They also sent me on a parent-led CBT course.
In the meantime, Dennis had become aggressive, hitting me and his sister during meltdowns. I told CAMHS and they said his circumstances had changed and they wouldn’t be able to support those issues.
They suggested another parenting course which I couldn’t attend as I work full-time. Then they discharged us and said there was nothing further they could do. They recommended some books and sent some leaflets, which were aimed at older children.
I did try the crisis team but they weren’t any help either. They made me feel I was more concerned than I should be. But he wasn’t sleeping and he was saying these awful things.
It’s hard for his sister and it’s scary. When you are a parent of a child with mental health issues, and you are exhausted and stressed, and you have to keep making endless telephone calls and push for things, it’s so dispiriting. You get passed on from team to team.
This goes deeper than a child needing help. The families are suffering too. We have to invest more in the mental health side of the NHS and get waiting lists down. The system is massively failing young people and families.
“James was diagnosed when he was six, but problems had started long before that. I raised concerns with the health visitor, nurseries and school, but they were brushed off as him being boisterous or bored.
“He suffered terribly at mainstream school which treated him like a naughty little boy. His mental health deteriorated to the point where at eight years old, he told us he wanted to die.
“He was prescribed with fluoxetine – brand name Prozac – by CYPS. We asked if he could have support for his mental health, but it wasn’t until we came out of lockdown three years later that he was allocated a mental health nurse.
“He had three to four sessions with the nurse and discharged himself. I had no control over that. It was very formal, two chairs facing each other in a room, ‘tell us what’s bothering you’ kind of thing. He said he’d talked about everything he needed to, and he was fine now. He’s extremely intelligent and I think he went in and told her everything she wanted to hear.
“But he hasn’t been OK. His Prozac has been increased but CYPS don’t seem interested in ways to help him with his mental health to get him off the drug. It definitely helps – it takes the edge off his anxiety – but nobody wants their eight-year-old to be on that type of drug long-term.
“He has extreme anxiety. There are times when he hits himself in the head and pulls his hair when he gets really upset. It’s devastating. All we want for James in life is to be happy and healthy. I want him to be able to cope with the world when he goes out in it.
“I gave up my job because I was dealing with so many professionals for James, I couldn’t manage it together with the behaviour at home. But if we had to go private, we’d find the money. We’d have to.”
Adam was diagnosed as autistic eight years ago and has extreme anxiety. We reached out to Autism Outreach and CYPS, but they basically told us that his anxiety levels were so high there was nothing they could do.
We did an ‘Understanding Emotions’ course with CYPS, which I got a lot out of but Adam didn’t. He found it very hard to talk about issues because he’s so literal, he just didn’t get it.
He did a couple of one-to-one sessions a few years later. The lady was lovely but she was talking abstractly about an emotional bucket, and he said, ‘I don’t have a bucket, what are you talking about?’ I told her he didn’t understand and asked if we could work something else out. And she said, ‘this is what we’ve got’.
One time we rang the crisis team because he was threatening to hurt himself at school. When we brought him home, he said he was better off dead. But it took them 24 hours to ring us back, and they decided he was safe because he was at home. I was literally sat with him in the front room, not letting him move, and begging them for help. They said I should take him to hospital if it got really bad.
If you talked to him, he would be so articulate and say anything to please you. They think that anyone who is autistic has behavioural issues, so they think he’s OK.
We don’t have a clue which way to turn now. Every time I’ve asked for support, it’s just been a waste of everybody’s time. But I don’t think anxiety should come with the territory. It’s not an excuse that you’re autistic.
The impact on the family is massive. As a parent it’s really demoralising, you feel like you’re constantly letting your child down.”
