What are the key inequalities?

In relation to longer term outcomes for people with ASD, the research implies that:

• The single best predictor of positive outcomes in relation to behaviour, education and social skills is non-verbal IQ, followed by useful speech at age 5 . The severity of the original symptoms is also influential on outcome, and early intervention has been shown to be an important influencing factor .
• A further study (Outcome 30 Year Follow-up in Denmark: F. W. Larsen, 1997) found that people with Asperger’s syndrome tended to have better outcomes in terms of education, employment, autonomy and marriage. For example, people with Asperger’s syndrome were more likely than people with other forms of autism to own their own homes as adults.
• Earlier research also confirmed that better outcomes are more likely for people with High Functioning Autism / Asperger’s syndrome possibly due to better treatment options.
• The positive impact of improved early years support and service provision on adult outcomes is echoed in other studies .

Childhood experience can play a key role in this respect. For example, despite having good cognitive skills, children with Asperger’s syndrome report more loneliness than typically developing peers and are also more often subject to shunning and bullying by their peers . Deficits in social communication skills may also be related to the increased risk of developing depression or anxiety disorders in this population , possibly because these children and young people have a better awareness of their difficulties and of their consequences . The consequences of these impairments are far reaching and in adulthood, high functioning individuals with ASD are less likely than their typically developing counterparts to live independently away from home, to marry or have friendships, to complete college courses or to work independently . Mood disorders such as anxiety and depression are also common .

Impacts on Families

In terms of wider impacts, there is some evidence of the impact of autism on family life. Stress in families of children with autism is well documented. It is worse where there are few support systems and the individual’s problems are severe. One third of mothers of children with autism suffer from depression, while marital relationships are often adversely affected . Many parents never get respite from their child and finding suitable childcare can be very difficult, and the severity of the disorder can leave parents exhausted, pessimistic and at risk of burnout .

In addition, the particular experience of siblings of individuals with autism has attracted research interest for some time. Findings are mixed as to the positive and negative experiences of having a sibling with ASD, some studies have found higher levels of depression, loneliness and behaviour problems, whereas others have found increased levels of pro-social behaviours and good adjustment.

An increasing amount of evidence is available on sibling experience of autism, for example, Wood et al (2003 ) used family systems theory to study sibling relationships in 50 families with a child with autism. They found that while siblings typically expressed satisfaction with their relationships, parents were somewhat less positive. Findings also outlined that stress in the marital relationship was associated with compromised sibling relationships and that informal social support buffered the deleterious effects of marital stress on positive, but not negative, aspects of the sibling relationship. Their findings reinforce the importance of considering family context as a contributor to the quality of the sibling relationship.

Health Inequalities and ASD

In broad terms, there is a well-reported link between learning disabilities and other health issues. For example :

• Respiratory disease is the leading cause of death for people with learning disabilities (46%-52%) and is much higher than for the general population (15%-17%).
• The incidence of cancer amongst people with learning disabilities is rapidly increasing due to increased longevity;
• Coronary Heart Disease is the second most common cause of death amongst people with learning disabilities.
• People with learning disabilities are between 8.5 and 200 times more likely to have a visual impairment compared to the general population and around 40% are reported to have a hearing impairment, with people with Down’s syndrome at particularly high risk of developing visual and hearing loss;
• 36.5% of adults with learning disabilities and 80% of adults with Down’s syndrome have unhealthy teeth and gums;
• Although people with learning disabilities visit their GP with similar frequency to the general population, they are less likely to receive regular health checks;
• Adults aged over 60 are less likely to receive a range of health services compared to younger adults with learning disabilities;
• Over 80% of adults with learning disabilities engage in levels of physical activity below the minimum recommended by the Department of Health, a much lower level of physical activity than the general population;
• People with learning disabilities are at risk of receiving no mental health service, due to the lack of communication between mainstream psychiatry services and learning disability psychiatry services .

In relation to ASD in particular, there are a number of potentially corresponding health issues have been identified :

• Epilepsy: Although the majority of individuals with ASD do not have epilepsy, between 20% and 30% of those with ASD will suffer from epilepsy or seizures . Research suggests that those ASD suffers with more severe cognitive disability, motor planning problems and significant receptive language issues are more at risk of developing epilepsy. A person with ASD is at greater risk of epilepsy if they also have some neurological conditions such as tuberous sclerosis or neurofibromatosis. There are two peaks for the onset of seizures: infantile spasms (often associated with learning difficulties) and in adolescence.
• Attention Deficit Hyperactivity Disorder: This appears to be the most common second diagnosis for ASD: of 6 – 12 year olds, with around 50% co-diagnosed with Attention Deficit-Hyperactivity Disorder (ADHD). Between 10% and 40% of those with ASD will have ADHD which will continue into adulthood .
• Anxiety: Although it is not a diagnostic feature of ASD, anxiety is an almost universal symptom throughout the spectrum. Many of the symptoms of high anxiety mirror those of ASD. The effect of anxiety in association with ASD is to make problems worse and even to turn what might be a difference into a disabling disorder. A dual diagnosis may be difficult under existing systems but it is important that the extra effects of the anxiety are recognised and treated. Types of Anxiety that are particularly associated with ASD are separation anxiety; social phobia; social reticence; and generalised anxiety. In many cases, where the anxiety remains untreated in ASD, the person may develop a full-blown anxiety-related disorder. These severe anxiety disorders are already features of ASD but become both more prevalent and more severe under extreme anxiety (e.g. phobias, panic- attacks, OCD, personality disorders).
• Mental Health & Wellbeing: There is an established link between ASD and affective disorders such as depression and bi-polar disorder. There is probably a genetic link in that families of people with ASD have a higher incidence of these affective disorders than families of other kinds of disorder (i.e. it is not a result of having a family member with a disorder). Around 1/3 of those with ASD experience mental problems such as depression, anxiety and suicidal episodes (information based on the results of a National Autistic Society survey). This proportion rises to 45% of those diagnosed in their 20s and 50% of those diagnosed in their 30s.
• Self-harm: Individuals with ASD are also prone to self-harm. Self-harm may be a reaction to anxiety, an unpredictable or overwhelming situation or lack of control – as a way of controlling themselves and the reactions of those around them. In individuals with ASD and additional severe learning difficulties (intellectual impairment), self-harm is likely to arise as a reaction to frustration or panic.
• Eating disorders and digestive complaints: There are as yet scientifically unproven theories about the aetiology of ASD that suggest that there are digestive problems leading to insufficient breakdown of proteins, so that peptides and other substances are over-produced, and (possibly because of a damaged gut wall) are absorbed into the blood stream, cross the blood/brain barrier.
• Sleep issues: Children with ASD commonly have problems with sleeping and these problems often remain into adulthood. As children, there are problems in getting to sleep, in sleeping in their own bed, in staying asleep and in waking early. This results in very little sleep for the child, and consequently in very little sleep for the family. As adults, people with ASD frequently have problems sleeping and often exist on very little sleep (only 2 to 4 hours a night for some children and adults with ASD) but seem at the same time to be suffering from the symptoms of chronic sleep deprivation; adding to their problems of stress.

Learning Disability and ASD

• Approximately 1/3 of those with ASD have a learning disability.
• Approximately 75% of those with ASD have a non-verbal IQ of below 70.
• Approximately 50% of those with ASD will not develop meaningful communicative language, with most also having problems with other forms of communication . 

What are the key gaps in knowledge / services?

The major knowledge in relation to ASD is the lack of accurate data about its prevalence. At all levels, statistics about the prevalence of ASD are limited; and this is particularly the case for adults with ASD. Loynes (2001) noted that there are no accurate, national figures about the prevalence of ASD in general, and despite some progress in relation to the child ASD population since then, there has been no robust study of the number of adults with ASD (Parliamentary Office of Science & Technology, 2008) . However, a government funded study to calculate the number of adults with ASD in England is currently being undertaken .

The development and delivery of services for those with autism is complicated due to the lack of sophisticated understanding of discrete needs necessary to deliver appropriate services for particular groups with particular sets of symptoms on the autism spectrum, and move beyond a “one size fits all” approach .

Literature focused on services for those with ASD, notes that a key problem is that those in need do not always have access to the services they require because they fall between the providers of mental health and learning disability provision. 

What are the risks of not delivering our targets?

If case finding and subsequent support and services for children and young people are inadequate there will be an increasing number of young adults who are not reaching their potential as well as increasing numbers with problems associated with ASD entering adult services.

Is what we are doing working?

It is difficult to assess but given the estimates of potential prevalence against the numbers known about (those with ASD at the severe end of the spectrum) it is likely that there is unmet need. It is important for commissioning processes to consider the extent to which existing and available services reflect good practice and to identify where changes may be required.

what is coming on the horizon?

The current lack of accurate information about the number of adults with ASD makes it difficult to map future service requirements. However, the US based Association of University Centers on Disabilities have highlighted some key areas which they foresee as future issues. These include transitional issues for adolescents with ASD moving into adulthood, increased need for community-based adult services and greater demand for post-secondary education.

An ageing population means that there will a greater number of adults with ASD who will have a range of physical and mental health issues associated with ageing, which will place additional demands on health and social services. Furthermore, demographic and economic trends are impacting on the security and cohesion of families making it more difficult for them to provide support, further increasing reliance on state provision.

A national research project designed to more precisely identify the number of people with autism is underway, findings are expected towards the end of 2009.

The DH appointment of a specialist advisor on autism at a national level, will provide further impetus to identify people with ASD and to develop services locally.

And that at a local level local delivery partners should action the autism ‘clarification note’ (Better services for people with an autistic spectrum disorder, 2006). 

What should we be doing next?

1. More work is required to increase awareness of ASD 
2. More work is required to increase the identification of cases of ASD and to improve the collection of information including identification of service costs 
3. Better partnership working and leadership across agencies. 
4. Continuing to address the policy agenda of Valuing People, Valuing People Now and Better Services for people with an autistic disorder.
5. More work is required to review and analyse future national research into the adult prevalence of ASD, and to incorporate key findings into the JSNA.