Our response to the Child and Adolescent Mental Health Services Review

July 2008

About us

The National Autistic Society (NAS) is the UK's leading charity for people affected by autism. We have over 18,000 members, 80 branches and provide:

• information, advice, advocacy, training and support for individuals and their families
• information and training for health, education and other professionals working with people with autism and their families
• specialist residential, supported living, outreach and day services for adults
• specialist schools and education outreach services for children
• out-of-school services for children and young people
• employment training and support and social programmes for adults with autism.

A local charity with a national presence, we campaign and lobby for lasting positive change for those affected by autism in England, Wales, Scotland and Northern Ireland. The NAS welcomes this Review and the opportunity to respond.

What is an autism spectrum disorder (ASD)?

Autism spectrum disorder (ASD) is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people. It also affects how people make sense of the world around them. It is a spectrum condition, which means that, while all people with an ASD share three main areas of difficulty, their condition will affect them in different ways. The three main areas of difficulty are:

• Difficulty with social interaction
  This includes recognising and understanding other peoples feelings and managing their own. Not understanding how to interact with other people can make it hard to form friendships.
• Difficulty with social communication
  This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice.
• Difficulty with social imagination
  This includes the ability to understand and predict other peoples intentions and behaviour and to imagine situations outside of their own routine. This can be accompanied by a narrow repetitive range of activities.

The term ASD covers people from across the spectrum, including those with Asperger syndrome and High Functioning Autism. Some people with an ASD are able to live relatively independent lives but others may need a lifetime of specialist support. People with an ASD often experience some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours.

Over 500,000 people in the UK have an ASD. Together with their families they make up over two million people whose lives are touched by autism every single day.

Overview of mental health problems among children with ASD

In 2004, the Office of National Statistics (ONS) reported that 30 per cent of children with autism had another clinically recognisable mental disorder, as compared to 10 per cent of all children and young people. Narrowing the scope, in 2006, an American study by Gurney, McPheeters and Davis showed that children with autism had a significantly higher prevalence of depression and anxiety disorders. Not only is the susceptibility higher, but mental health problems may be more difficult to diagnose in individuals with an ASD. As Howlin (1997) notes, because people with autism and AS are unable "to communicate feelings of disturbance, anxiety or distress [it] can also mean that it is often very difficult to diagnose depressive or anxiety states, particularly for clinicians who have little knowledge or understanding of developmental disorder". Because children and young people with ASD have a higher rate of mental health issues, compounded with increased difficulty in diagnosing mental health conditions, a greater understanding of ASD, along with training in distinguishing between ASD, differential diagnoses, and the presence of co-morbidities among all health professionals is essential to better serving the needs of this population.

Findings from the National Autistic Society Survey on Child Mental Health

In autumn 2007, the NAS conducted an online survey asking about the experiences of children and young people with mental health generally and also CAMHS services in particular(1). Nearly half of all respondents said that their first experience with mental ill health began before the age of 7. Almost three quarters said that they had their first experience before the age of 11. The majority of respondents reported having experienced anxiety (87 per cent) with slightly less than half experiencing depression (45 per cent). Of those who had experienced depression, 54 per cent also said that they had had suicidal thoughts (or 33 per cent of all respondents).

Our findings showed that most respondents felt a lack of understanding about their autism from non-mental health professionals such as GPs, school employees, and social workers (83 per cent), a lack of support for their autism (77 per cent), a lack of friends and social support (65 per cent), and a lack of appropriate mental health services (54 per cent) affected their mental health. Those who noted having suffered from depression and suicidal thoughts were much more likely to report that they experienced a lack of understanding from mental health professionals, lack of appropriate mental health services, bullying, and lack of friends and social support. These findings are consistent with anecdotal evidence, which has often indicated a link between a lack of services for and understanding of autism exacerbating poor mental health.

Interestingly, both the type of mental ill health experienced and what affected their mental health varied across diagnoses. People who identified themselves as having High Functioning Autism (HFA) or Asperger Syndrome (AS) were almost twice as likely to report experiencing depression as someone with autism with an accompanying learning disability (LD), and two thirds as likely as those with autism. In addition, those who reported having HFA or AS also experienced a lack of understanding of autism from mental health professionals at a higher rate than others. Bullying and lack of friends and social supports was also cited more often from this group as affecting their mental health.

In terms of service use, nearly three-quarters of those surveyed had had contact with or experience using mental health services. One in ten children and young people surveyed had accessed the most intensive services, such as specialist inpatient mental health services or an equivalent level of services (roughly equivalent to Tier IV services), much higher than the general population. Thirty per cent received mental health support from mental health professionals in the community or based at a GP surgery clinic or school (Tier II), while 34 per cent received support from non-specialists (Tier I). The majority of those accessing mental health services (55 per cent) had received them at a mental health or psychiatric clinic (Tier III support).

However, getting access to appropriate services proved to be difficult as 79 per cent reported it was hard or very hard to get the right support, with 42 per cent waiting 2 years or more to get that service. Of the roughly 25 per cent of respondents who reported not using mental health services, one quarter said that they had tried but found that mental health staff did not understand their autism, while nineteen per cent said that they could not get a referral. Twelve per cent of respondents said that they were on a waiting list.

While there were a few examples of positive experiences, satisfaction with mental health services was generally low. Over 70 per cent of respondents reported being unsatisfied with the services they had received, while 47 per cent of people noted that the understanding and training of mental health staff in ASDs was poor, very poor, or non-existent.

The complex relationship between ASD and mental health conditions

The link between ASD and mental health issues and can be divided into three main categories: increased vulnerability to developing mental health problems; behaviours associated with ASD having similar symptoms to other conditions, and co-morbidity with unrelated severe mental illnesses and disorders. While it is difficult to make a clear distinction between some of these groups, as individuals with ASD could fall into more than one category, it is important to acknowledge the complicated relationship between ASDs and mental health conditions. More importantly, however, we need to recognise the vital role that greater understanding of autism, timely diagnosis of mental health problems, and improved access to appropriate services play in helping people with ASD.

A more vulnerable population

Children on the autism spectrum have an increased vulnerability to developing mental health conditions because of the nature of ASD. As autism is a developmental disorder that impairs the way that people communicate, people with ASD may find it challenging or impossible to express how they are feeling, particularly in times of stress, unhappiness or fear. Similarly, difficulty with social communication may prevent people with autism from expressing their feelings or explaining any symptoms or health problems they may have which could also lead to increased anxiety or depression. This struggle to communicate may cause significant frustration, anger, or hopelessness and potentially lead to any number of anxiety disorders or depression. People with Asperger Syndrome and high functioning autism may be particularly vulnerable to conditions like depression as they can often experience social isolation because of lack of friendships and social support which can create feelings of extreme sadness and despair. Because of their condition, people with ASD may be more vulnerable to bullying, which can also exacerbate mental health problems (Reid 2006).

In a 2005 study, Konstantareas found that a lower level of social skills was associated with a higher level of depression. Having close friends and a greater ability to relate to others was inversely related to level of depression. The aforementioned ONS study findings may help to illustrate this point as it found that 71 and 73 per cent of children with an ASD had a more difficult time making and keeping friends, respectively, as compared to 10 and 5 per cent of other children. Taken together, these findings indicate that children with impaired social communication and interaction skills may be more likely to become depressed. Many children with high functioning autism have the desire to develop friendships but face difficulties in developing relationships as a result of their autism. Children with high functioning autism are also more likely to report being bullied than other children on the spectrum (NAS, 2006), and so it makes sense that those children with HFA or AS who responded to the NAS survey on child mental health were more likely to report experiencing depression than those who identified as having autism or autism with LD.

Behaviour associated with autism

Some behaviour associated with autism, like sleeping difficulties, lack of concentration, personal obsessions, rituals, and the need for routine, can present similarly to and be misdiagnosed as mental health disorders. As some of these behaviours resemble those of generalised anxiety disorder and obsessive compulsive disorder (OCD), it is important that professionals are trained in ASD in order to identify the reason behind the behaviour, make an accurate diagnosis, and recommend appropriate treatment when or if necessary.

Children with ASD, like children with generalised anxiety disorder, may have difficulty sleeping at night or lack of concentration at school. However, the behaviours may occur for different reasons. Lack of concentration, for example is often associated with sensory processing difficulties in children with ASD. If a child is overly stimulated by sounds, lights, or other objects in a classroom, he or she may be unable to focus on what the teacher is saying.

Personal obsessions, rituals, and routines are associated with both ASD and OCD, but are likely in each case to have different origins. In the case of OCD, children may have frequent uncontrollable thoughts that prompt them to perform certain rituals and routines in an attempt to get rid of them. These thoughts are called 'obsessions' and the resulting behaviours are known as 'compulsions'. The classic example of this is repeated hand washing because of a fear of germs (Rethink, 2006). For children with ASD, routines, obsessions, and repetitive behaviours may serve a different purpose, helping to provide provides structure, order and predictability which helps individuals cope with the uncertainties of everyday life.

As these conditions may look the same, professionals need to have a high enough level of training and understanding of autism to be able to "unpick" the different behaviours to identify the underlying condition so that effective support and where appropriate treatment can be put in place.

Unrelated mental illness

As with the general population, people with ASD may have a mental health condition unrelated to their autism. Incidence of severe mental illness like schizophrenia, bipolar disorder, and personality disorders in people with autism is similar to that of the general population. However, additional conditions are often overlooked through what is sometimes described as "diagnostic overshadowing". This is where a primary diagnosis means that other conditions are left undiagnosed, possibly as a result of a lack of understanding of autism on the part of professionals or a failure to carry out a full assessment.

There is no evidence that people with autism are more likely to develop a mental illness such as schizophrenia because of their ASD (Wing, 1996). However, some individuals have been misdiagnosed with schizophrenia for example when they actually have an ASD because diagnosticians do not have a full understanding of the behaviours associated with autism, such as the literal understanding or unusual use of language, odd behaviour or strange obsessions, and their implications for the process of diagnosis.

A lack of support and services

Non-mental health services

Providing appropriate services to people with autism is extremely important in improving quality of life and supporting emotional wellbeing. Many people with ASD find the world they live in a very confusing place, and a lack of autism-specific support, such as clear structures and routines and appropriate forms of communication, can lead to high levels of anxiety and undermine emotional wellbeing. In NAS research on autism and education carried out in 2006, 34% of parents said that a delay in accessing support at school had had a negative effect on their childs mental health. Yet often the support that a child with an ASD needs can be simple to implement and can benefit other children as well.

We welcome the Governments commitment to raising the levels of understanding and training in autism in schools through initiatives including the Inclusion Development Programme, the Autism Education Trust and new modules for initial teacher training in special educational needs, including autism. However, there needs to be a much greater understanding of autism spectrum disorders across a wide range of professionals, including GPs and social workers. Standard 8 of the Childrens National Service Framework (NSF) recommends that all professionals who come into contact with children with disabilities have training in autism. This is essential considering that more than four in ten GPs do not feel they have sufficient information to make an informed assessment about the likelihood of a patient having an ASD and 13 per cent do not know how or where to refer a patient with a suspected ASD (NAS 2003). Clear referral pathways should be developed locally so that all professionals working with a child on the autism spectrum can refer to appropriate diagnostic and mental health services effectively and quickly.

Mental health services

Where young peoples emotional wellbeing deteriorates to the point of needing more specialist mental health support, appropriate services need to be made available with access to expertise in autism spectrum disorders. Yet in a large proportion of cases this is not happening, causing mental health problems to deteriorate still further. Most people surveyed said it was hard or very hard to get the right support. People are facing delays of two years or more in accessing services, in many cases having to reach crisis point before anything is done. As one parent reported in the NAS survey, "it took my son to have a mental health breakdown and be an absolute danger to his young siblings to access CAMHS. [He was] turned away three times in eight years [because there were] no vacancies".

In some cases a lack of understanding of ASD leads to professionals ignoring the ASD, so that only the non-autism aspects of an individuals difficulties are addressed. As one respondent in the NAS survey noted, "Autism is the root of my problems. Dealing with the co-morbidities only makes them go away for a while until the autism forces them back to the surface." If the underlying difficulties relating to autism are not addressed then the mental health problems are very likely to reoccur. In other cases there is sometimes a refusal to treat altogether.

Often, the mental health support people are able to access is inappropriate or ends when the crisis has passed. A number of respondents reported being referred for inappropriate treatments and therapies, such as drugs, or cognitive behaviour therapy for children with communication difficulties. The Royal College of Psychiatrists state that "Commissioners should ensure that individuals who are thought to have autistic spectrum disorders have access to expertise across a broad range of therapeutic approaches, including those relevant to the psychological management of these specific disorders, delivered through autism-friendly treatment facilities that include the whole range of age and ability and take into account cultural factors."

Without timely and appropriate support, mental health conditions in an already vulnerable population could become much worse. Farrugia and Hudson (2006) argue that anxiety and behavioural symptoms left untreated in adolescents with Asperger syndrome might lead to significant life interference and continue through adulthood.

Services should be appropriate to the needs of children with ASD, with autism-friendly environments, and support in place, such as systems for children who have difficulties in waiting for appointments. They must be based on the principle of early intervention, and be person-centred, responding to the needs of the individuals as and when they need services.

Training for mental health professionals

CAMH services have a key role in diagnosis of ASD. Yet nearly half of the survey respondents said that understanding of ASD by mental health professionals was poor or non-existent. The lack of understanding of ASD amongst mental health professionals means that often diagnoses are not made or are made incorrectly. As one parent responding to the NAS survey wrote, had I accepted the first CAMHS diagnosis, my son would still be labelled paranoid schizophrenic This misdiagnosis was a travesty caused by the non-existent knowledge of Asperger [Syndrome] by a consultant.

Unfortunately, this is an all too common sentiment, and a misdiagnosis can lead to no or inappropriate support being put in place, further increasing the risk of developing mental health problems. With proper knowledge of ASDs, these egregious misdiagnoses could be reduced and lead to appropriate services and support.

Respondents felt that a lack of understanding by various professionals significantly affected their mental health. Those respondents identified as having HFA or Asperger Syndrome reported experiencing a lack of understanding of autism from mental health professional at a higher rate than others.

We recommend a tiered approach to training.

All mental health professionals should have a basic awareness and understanding of ASD.
There should be a named member of each CAMHS team with an in depth understanding of ASD.
For the most complex cases, specialist expertise in ASD should be available at a regional level, with clear pathways for referral.
In particular, there needs to be increased understanding of how to support the mental health needs of children and young people with AS and HFA.

In terms of diagnosis, we support the recommendation in the Royal College of Psychiatrists' report "Psychiatric Services for Adolescents and Adults with Asperger Syndrome and Other Autistic-Spectrum Disorders" (2006) that: "Commissioners should ensure that there is access to local, basic diagnostic expertise that would allow for the firm diagnosis of autistic spectrum disorders in clear-cut cases. They should also ensure access to a second level of diagnostic expertise for those individuals where there is diagnostic uncertainty."

Coordination across services

As autism is a multi-faceted developmental disability, it is crucial that children with ASD receive holistic support. The process of assessment and diagnosis is a crucial time when information, services and support should be made available. As diagnosis is often carried out by CAMH services they have a key role in co-ordinating this information.

Additionally, the National Autism Plan for Children (NAP-C), developed by the Royal College of Paediatrics and Child Health and Royal College of Psychiatrists with the NAS, states that assessment of mental health is an essential component of a complete multi-agency assessment as a child goes through the process of identifying, assessing and diagnosing any ASD they may have. The All Party Parliamentary Group on Autism manifesto recommends that by 2013, "People with autism will become automatically eligible for preventative mental health services after diagnosis, tailored to their needs and developed using an autism-sensitive person-centred planning process."

The Every Child Matters agenda places a strong emphasis on bringing services together to meet the needs of a child as a whole. Yet in many cases agencies are not working together. As one NAS survey respondent wrote, "my son [has become] more and more isolated because there is no package type of service for him. Everyone just handles their little bit. The whole thing is therefore fragmented and falls apart when one part goes wrong. No one works together. My son is a whole person. He needs a holistic service. His mental health [problem] is a result of other poor services." Improved coordination across childrens services including CAMHS is essential. This must include better information and support to parents, as well as better multi-agency assessment and service provision. The NAS welcomes the current review of childrens trusts arrangements led by the DCSF which will strengthen the duties on childrens services to work together.

Transition to adulthood

The transition to adulthood is a particularly difficult time for young people with ASD. Many people with ASD have difficulties coping with change, and according to Tantam & Prestwood (1999) people with autism and Asperger syndrome (AS) are particularly vulnerable to mental health problems in their late adolescence and young adulthood. In addition the move to adult services poses significant challenges, with the social care inspectorate recently describing the process as a nightmare. Effective support during the transition to adulthood is critical. Again, this was highlighted in Standard 9 of the Children's National Service Framework (NSF) in 2004, stating that "Young people aged sixteen and seventeen years and children with both a learning disability or pervasive developmental disorder(2) and mental health problems have not received sufficient input from CAMHS."

Furthermore, eighty four per cent of respondents aged 15 and older in our survey said that no one had spoken to them about support that will be available to them once they were too old for CAMHS. It is unacceptable that at a time where young people are likely to be in particular need of support the vast majority of young people have no idea whether that support will be available.

There needs to be a clear and transparent process of planning for the transition from CAMHS services, and this needs to be in place regardless of whether a young person will continue to access adult mental health services or not. Where a young person does proceed to adult services information needs to be shared effectively and adult services need to be involved at the beginning or as early as possible in the transition planning process.

The Royal College of Psychiatrists recommend that "It should be recognised that those who are moving out of psychiatric services will still require additional support whether they are moving on to education or employment and this should also be the focus of multi-agency planning."

Conclusion and recommendations

The difficulties children on the autism spectrum face in accessing of mental health services were identified in both the Every Child Matters Green Paper back in 2003 and the Disabled Children's Standard of the Children's NSF in 2004. In 2008 families are still reporting the same difficulties. This now needs to be prioritised urgently to ensure that children and young people with autism spectrum disorders finally get the support they require.

1. There needs to be much greater understanding of autism spectrum disorders across a wide range of professionals, including GPs and social workers to support the emotional well-being of young people with ASD.
2. Clear referral pathways should be developed locally so that all professionals working with a child on the autism spectrum can refer to appropriate diagnostic and mental health services effectively and quickly.
3. Individuals who are thought to have autistic spectrum disorders should have access to expertise across a broad range of therapeutic approaches, including those relevant to the psychological management of these specific disorders, delivered through autism-friendly treatment facilities.
4. Services should be appropriate to the needs of children with ASD, with autism-friendly environments, and support in place, such as systems for children who have difficulties in waiting for appointments. They must be based on the principle of early intervention, and be person-centred, responding to the needs of the individuals as and when they need services.
5. Training should be undertaken on a tiered basis:
6. All mental health professionals should have a basic awareness and understanding of ASD.
7. There should be a named member of each CAMHS team with an indepth understanding of ASD.
8. For the most complex cases, specialist expertise in ASD should be available at a regional level, with clear pathways for referral. In particular, there needs to be increased understanding of supporting the mental health needs of children and young people with AS and HFA.
9. Improved coordination across childrens services including CAMHS is essential. This must include better information and support to parents, as well as better multi-agency assessment and service provision.
10. There needs to be a clear and transparent process of planning for the transition from CAMHS services, and this needs to be in place regardless of whether a young person will continue to access adult mental health services or not. Information needs to be shared effectively and adult services need to be involved at the beginning or as early as possible in the transition planning process.

In their April 2006 publication "Psychiatric Services for Adolescents and Adults with Asperger Syndrome and Other Autistic-Spectrum Disorders", The Royal College of Psychiatrists presented a number of key recommendations to ensure that individuals with autism spectrum disorders receive appropriate psychiatric services. The NAS also endorses the following recommendations from the report, which are of particular relevance to this review:

• No. 1. The view of individuals with autism spectrum disorders should be incorporated routinely in service planning both individually and collectively.
• No. 5. Commissioners should ensure that there is access to local, basic diagnostic expertise that would allow for the firm diagnosis of autistic spectrum disorders in clear-cut cases. They should also ensure access to a second level of diagnostic expertise for those individuals where there is diagnostic uncertainty.
• No. 6. Services should be well integrated so that clinical diagnosis is not isolated from treatment and that this, in turn, is closely linked to the (non-psychiatric) services that are provided by other agencies.
• No. 7. Psychiatric training should include experience in the diagnosis, assessment and management of individuals with autistic spectrum disorders. In particular, there should be some supervised experience with adolescents and adults of normal cognitive ability who have these disorders (i.e. individuals with Asperger syndrome or high functioning autism).
• No. 8. Commissioners should ensure that individuals who are thought to have autistic spectrum disorders have access to expertise across a broad range of therapeutic approaches, including those relevant to the psychological management of these specific disorders, delivered through autism-friendly treatment facilities that include the whole range of age and ability and take into account cultural factors.
• No. 9. Referrals should be made within a formal contractual programme (rather than on an individual basis) to ensure that the provider (rather than any individual clinician) accepts responsibility for the care of the individual with the disorder and there should be regional agreement as to the roles of various individual consultants. It should not be assumed that a service can absorb this patient group without specific planning and investment.

References

1. The response was sizeable with 433 surveys fully completed: 84 per cent filled in by parents or carers on behalf of a child or young adult on the autistic spectrum, 14 per cent completed by a child or young adult with autism, and 2 per cent identified themselves as other. Respondents were in all nations across the UK with the vast majority in England (83 per cent). Sixty three per cent of the respondents identified themselves as having high functioning autism or Asperger syndrome, 21 per cent as having autism plus a learning disability, 16 per cent as having autism, and 5 per cent as other.
2. Autism spectrum disorders including Asperger syndrome are the most common pervasive developmental disorders.