Child and Adolescent Mental Health Services

Charlotte Leslie Excerpts

Wednesday 7th July 2010 Westminster Hall

[Jonathan Reynolds (Stalybridge and Hyde) (Lab/Co-op)]

I appreciate having been able to secure the debate. I thank the Minister and shadow Minister for their attendance, and am grateful to the other MPs present. A lot of people watching the debate on the Parliament website might not be aware that we all had a late night last night, debating the finer points of the Finance Bill, so I am grateful to hon. Members for turning up. I also thank the National Autistic Society for providing me with statistical information. I remind the Chamber that I have declared an interest in the subject of the debate, as the parent of a child with autism.

I want to discuss the experience of many families with autism; their feedback on the support provided by child and adolescent mental health services, or CAMHS; and problems of communication, misdiagnosis and the training of CAMHS professionals. I will then make the case for more specialist autism support and ask the Minister a number of questions.

Autism is a serious, lifelong, disabling condition that affects how a person communicates with and relates to other people. It is a spectrum disorder that affects each individual differently. Some people with autism can lead independent and fulfilling lives with little support, while others need specialist support throughout their lives.

People with autism have said that, to them, the world is a mass of people, places and events of which they struggle to make sense, and which can cause them considerable anxiety. In particular, understanding and relating to other people and taking part in everyday family and social life may be harder for them, while other people appear to know intuitively how to communicate and interact with each other. Approximately one child in 100 has autism.

Autism is not a mental health problem, but a recent study by Professors Simonoff and Charman found that 71% of children with autism have a co-occurring mental health problem, and 40% have two or more. Such problems include serious conditions such as depression, anxiety disorders and obsessive-compulsive disorder, which can be debilitating without the right support. Seven out of 10 children with autism develop such conditions, which is far too high a figure. However, with the right support from people who understand autism, such children can have mental health as good as any other child’s. Unfortunately, that support is often unavailable in our society.

Children with autism find it difficult to understand the world around them. They may not understand social cues and expectations or be able to identify patterns and routines in their lives. Help with understanding what to do in different situations or what happens next in a sequence of events, or with coping with changes in routine, can make a big difference, but without such support, children with autism can become anxious or frustrated.

Children with autism are also less likely than other children to have strong social relationships. One Office for National Statistics study found that 42% of children with autism had no friends, compared to 1% of other children. Children with autism may act in unusual ways, or may try to fit in with their peers in socially inappropriate ways. Other children may ridicule or bully them as a result.

Difficulties at school and elsewhere may affect the self-esteem of children with autism. An inability to express their feelings can lead to escalating emotions or leave them unable to deal with experiences such as loss or grief. A supportive educational setting that works for the child, in partnership with mental health services, can be crucial to maintaining emotional well-being and preventing mental health problems from developing, yet the NAS found that 34% of parents said that a delay in accessing the right support at school had had a negative impact on their child’s mental health, and that half of children with autism are not in the kind of school that their parents believe would best suit them. Awareness and consideration among the general public also play a part. Whether in shops and restaurants, on public transport or in the park, children with autism and their parents can face intolerance and lack of understanding that can cause considerable stress and anxiety.

It does not have to be like that. Most of those difficulties can be overcome with the right support for children with autism and their families. Children with autism can live happy, healthy, fulfilled lives, do well at school and reach their full potential. Everyone in society must take some responsibility for making that happen.

I intend to concentrate on the support that children with autism and their families receive when mental health problems develop. According to Government-commissioned research conducted by the university of Durham, one child in every 10 who accesses child and adolescent mental health services has an autism spectrum disorder. That amounts to more than 10,000 children a year. Such children are often extremely vulnerable and in dire need of support that works for them. Another ONS study for the Government found that 25% of children with autism either self-harm or have suicidal thoughts. Their families are desperate for skilled help that can improve their children’s mental health and quality of life.

The NAS has been carrying out in-depth research on the subject since last summer, as problems with CAMHS were being mentioned consistently through its helpline and regional offices. When NAS members were surveyed on the organisation’s campaigning priorities, 99% rated improving CAMHS as either important or very important. The NAS held focus groups with parents and one-to-one interviews with children who had experienced CAMHS, followed by a mass survey of parents. It also visited several CAMHS sites and spoke to professionals and clinical directors.

Through its research, the NAS has found that, sadly, most children with autism and mental health problems are not getting the service that they need from CAMHS. According to the NAS survey, CAMHS fails to improve the mental health of two thirds of children with autism. We must improve on that.

One young woman said of her experiences as a nine-year-old accessing CAMHS that

“when I went in to the meeting I was miserable and depressed. When I came out I was suicidal. I was trying to throw myself out of my windows and hang myself… It took me several years to recover and I didn’t ever want anything to do with them.”

The NAS consistently heard from professionals, parents and children that, despite the huge proportion of children with autism in the system, understanding of autism among professionals is generally poor. Only half of parents feel that CAMHS staff have a good understanding of autism, and fewer than half think that CAMHS staff know how to communicate properly with their child.

To work successfully with a child with autism, a CAMHS professional must have a good understanding of autism. Autism is a communication difficulty, so the professional must generally adapt how they communicate, which requires a good understanding of autism. With respect to some children, that involves speaking more clearly and directly, while others have limited or no verbal communication and may need visual cues to help them to make sense of and communicate their feelings. A child with autism is likely to take longer than other children to trust the professional and communicate openly.

Professionals may also have to adapt their explanations to be less abstract or hypothetical and relate more directly to the specifics of the child’s situation. For example, if a professional works with a child with autism to deal with a certain situation in a classroom setting, the child will usually struggle to generalise, applying the same techniques at home or on the school bus. The professional will have to work through each situation in turn, which is not necessary for other children.

Children with autism can also struggle to explain difficulties that they are not currently experiencing. One child said:

“They need to be there when things happen, because when I went to see the doctor at our local CAMHS I never felt bad and couldn’t talk about what had been hard because it wasn’t happening then”.

When professionals are given the time and training to get to know the child and their family, understand the child’s autism and how they communicate best, and adapt their approach accordingly, outcomes are greatly improved. However, a professional who does not understand autism is unlikely to make such adjustments, leading to a breakdown in communication and making effective intervention extremely difficult.

When a child with autism also has a mental health problem, it is crucial that the right support is provided for the right diagnosis. If a child is wrongly assessed, the wrong support will inevitably follow. Practitioners who do not have a good understanding of autism can misdiagnose children as a result, leading to inappropriate or unsuitable interventions. Without a sound working knowledge of autism, some behaviours that are common in children with autism can easily be interpreted as mental health problems. For example, autism-related personal obsessions, rituals and routines can lead to a false diagnosis of OCD. Peculiarities and fads about what a child eats can come across as an eating disorder. Sleeping difficulties or an aversion to human touch can wrongly lead to suspicions of abuse-related trauma.

The NAS found that some children who had been diagnosed with autism were wrongly undiagnosed by a professional who was convinced that their behaviour was symptomatic of a different condition. Other children’s mental health conditions were overshadowed by their autism, when professionals were unable to distinguish the symptoms of mental health problems from autism-related behaviours: if the CAMHS team focused on autism, mental health issues were ignored. Some parents said that the professionals they met considered conditions such as anxiety disorders inevitable and unavoidable side-effects of autism, rather than as the separate, treatable conditions that they are.

Many of the professionals told the NAS that they wanted more opportunities for professional training and development, so that they and their colleagues would be better able to work with children with autism and mental health problems. Many children with autism receive either inappropriate support or no support at all because the right support simply does not exist in their area. Some CAMHS professionals told the NAS that their waiting lists for children with autism were much longer than those for children without autism, and that, because so few staff had autism training, the vast majority lacked the skills to treat children with autism, so those children were left waiting for the handful of staff with sufficient autism expertise.

[Charlotte Leslie (Bristol North West) (Con)]

As chair of the all-party group on autism, I congratulate the hon. Gentleman on securing this debate on an immensely important subject. The NAS has done fantastic work raising these issues with colleagues. What training did CAMHS staff receive under the previous Government and does he think it was adequate? If not, what improvements might be made?

[Jonathan Reynolds]

I am grateful to the hon. Lady for her intervention, and I acknowledge her work and expertise in this field. I approach this subject primarily as a parent, so I am happy to say that more needs to be done. I am not making this a party political issue between this Government and the previous one. I am trying to highlight the issue and, I hope, move forward together, across the House.

I wish to identify some good practice relating to the hon. Lady’s question. Dudley primary care trust operates an autism clinic that focuses on diagnosis and assessment, and has the specialist expertise to assess complex autism cases. The clinic takes a “broad apprenticeship” approach to training new staff, which gives them the opportunity to observe specialists and more experienced clinicians assessing children from behind a one-way mirror.

After new staff have watched several assessments, they progress to shadowing colleagues and then to taking the lead with children with autism, with support from a specialist. Finally, they are able to work alone and train new starters themselves. They learn through practical experience, rather than theory. The clinic also shares its expertise more widely and trains external agencies. For instance, it trained a group of specialist autism teachers and key workers to provide social skills training to children, meaning that social skills training could continue once a child had left CAMHS, making it far more effective than if it had been delivered once and then discontinued.

There is clear evidence that a good understanding of autism is vital to delivering an effective service to the high number of children with autism in the CAMHS system. All professionals working in CAMHS must have their training needs relating to autism recognised and addressed. In “Fulfilling and rewarding lives”, the Government’s recently published strategy for adults with autism, there is a commitment for

“all NHS practitioners”

to

“be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary… but more importantly so they can understand how to adapt their behaviour, and particularly their communication, when a patient either has been diagnosed with autism or displays these signs.”

The same strategy commits the Government to working with the General Medical Council and various professional bodies

“to improve the quality of autism awareness training in their curricula.”

What action do the Government intend to take to ensure that the NHS training objectives made in the autism strategy, “Fulfilling and rewarding lives”, are met, so that all CAMHS practitioners receive some basic training in autism?