Facts and figures

Overall prevalence of ASD

It is currently extremely difficult to determine the number of adults living in Newcastle with ASD. 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. Despite some progress in relation to the population of children, 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 . As a result, it is extremely difficult to precisely quantify the total number of people with ASD in Britain. In this context, the calculations regarding prevalence detailed below should be treated with a degree of caution.

At present, the best estimates of the prevalence of ASD are based on studies that focus on the ASD population as a whole, although there is still a degree of variation in the prevalence rates quoted. For example:

• In 2001, analysis of several key research studies had led to an assumption that approximately 1 in 110 people have some form of ASD .
• However, a more recent Office of National Statistics survey (2005) indicated that 0.9% of the school age population have ASD.
• A further 2006 study conducted in the South Thames region showed a prevalence rate of 116 per 10,000 for all ASDs .

These studies indicate how difficult it is to accurately estimate the prevalence rate of ASD. This is of course linked to fact that the different methodologies and approaches employed in these studies may produce different prevalence rates. However, based on analysis of available data, the National Autistic Society estimates that that the ASD prevalence rate for children is 1 in 100. Estimates suggest that there could be between 500,000 and 600,000 people with Autism in the UK and these figures are used for the purposes of this report.

Prevalence in relation to the ASD scale

As the National Autistic Society makes clear differences in definitions, difficulties defining particular sub-groups within the autism scale and the lack of clear boundaries separating ‘typical’ autism from other autism spectrum disorders make it difficult to develop an accurate calculation of the number of people with ASD . This also makes it difficult to calculate the number and proportion of those on the ASD scale with a particular type of autistic disorder.

The 1997 National Autistic Society report ‘How many people have autistic spectrum disorders?’ breaks down the prevalence rate of 91 per 10,000 into those with and without learning disabilities (see below):

Table 1: Learning Disability (IQ below 70 Approx. rate per 10,000)

Table 2: Learning Disability (IQ 70 or above Approx. rate per 10,000

It is therefore not possible to accurately calculate the national or local level population with specific types of ASD and link this to service provision and commissioning decisions.

Demographic trends

 In terms of other identified demographic variations, there is relatively limited reliable evidence.  

Ethnic minorities

At present, information on the prevalence of autism spectrum disorders (ASDs) among the black and minority ethnic population is not centrally collected. The Medical Research Council's (MRC) "Review of Autism Research" (2001), states that it is unclear whether people of particular racial origins are more at risk of ASDs. However, interestingly, some ethnic differences in prevalence of autism have been identified in population studies both in the UK and other countries. In Sweden, autism among the immigrant populations was found to be higher than the host population and here in the UK, there also appears to be evidence that autism in higher numbers is found in Afro-Caribbean groups , although the reason for these findings is unclear.  

There are various theories as to why this gender gap occurs. For example, it is thought that in general, boys tend to have a greater expression of social deficits, whereas girls tend to be relatively more able in social play and have a more even profile of social skills. Girls seem to be more able to follow social actions by delayed imitation which perhaps disguise the symptoms of Asperger's Syndrome. In relation to gender, it is known that ASDs are more common in males than females. Various rates are quoted in the research but in general, ASD appears to occur at a rate of four males for every female (National Autistic Society). In relation to Asperger’s Syndrome, it had been thought until recently, that this ratio was far higher. Certainly, in the context of referrals, the male to female ratio for a diagnostic assessment for this condition is approximately 10:1. However, the evidence indicates that the actual ratio of diagnosed children is 4:1 (male: female) which is the same ratio as occurs with ‘classic’ autism. 

 Gender

 In relation to gender, it is known that ASDs are more common in males than females. Various rates are quoted in the research but in general, ASD appears to occur at a rate of four males for every female (National Autistic Society). In relation to Asperger’s Syndrome, it had been thought until recently, that this ratio was far higher. Certainly, in the context of referrals, the male to female ratio for a diagnostic assessment for this condition is approximately 10:1. However, the evidence indicates that the actual ratio of diagnosed children is 4:1 (male: female) which is the same ratio as occurs with ‘classic’ autism.

There are various theories as to why this gender gap occurs. For example, it is thought that in general, boys tend to have a greater expression of social deficits, whereas girls tend to be relatively more able in social play and have a more even profile of social skills. Girls seem to be more able to follow social actions by delayed imitation which perhaps disguise the symptoms of Asperger's Syndrome.

Genetic links

The genetic basis for autism appears to be well recognised through family and twin studies. Results of twin studies imply that, when taken together with the population base rate for autism, the heritability or the underlying genetic liability is about 90% . This is the highest figure known among all multi-factorial child psychiatric disorders. An infant with an older sibling with autism has a 1 in 20 chance of developing the disorder. The inference from twin and family studies is that there are 3 to 12 susceptibility genes for autism acting synergistically . However, the genetic basis does not account for the higher prevalence of ASD in males. 

Ethnic minorities

At present, information on the prevalence of autism spectrum disorders (ASDs) among the black and minority ethnic population is not centrally collected. The Medical Research Council's (MRC) "Review of Autism Research" (2001), states that it is unclear whether people of particular racial origins are more at risk of ASDs. However, interestingly, some ethnic differences in prevalence of autism have been identified in population studies both in the UK and other countries. In Sweden, autism among the immigrant populations was found to be higher than the host population and here in the UK, there also appears to be evidence that autism in higher numbers is found in Afro-Caribbean groups , although the reason for these findings is unclear.  

Current ASD population in Newcastle

Based on the population data for Newcastle upon Tyne and the above prevalence figures quoted in previous research, it is possible to estimate what the expected ASD population in Newcastle could be. 

• Nationally, it has been estimated that approximately 500,000 to 600,000 people have ASDs in the UK from a total population of 60,975,000 (ONS, 2007) which equates to a prevalence rate of from 0.82% to 0.98% of the population respectively .
• The population of Newcastle is approximately 271, 600 . Using a prevalence rate of 0.82%, it can be roughly estimated that approximately 2,227 people living in Newcastle have ASDs.
• Using the 0.82% prevalence rate and subtracting non-adults (in this instance 42,500 people aged below the age of 15 due to the age categories used by the data source), it can be estimated that there are approximately 1,879 adults living in Newcastle with ASDs.
• Using a prevalence rate of 0.98% and using the same data and calculations, would result in approximately 2,245 adults living Newcastle with ASDs.

However, as these prevalence figures are lower than that estimated by some other research, it is appropriate for any commissioning strategy and commissioners to regard this as a minimum figure for the prevalence of ASD in Newcastle. 

Trends

The literature suggests that a combination of increased awareness, improved case finding and available support has caused the estimated prevalence to grow steadily since the 1970s. Using available information regarding current population levels, future population trends and available information about prevalence rates, it is possible suggest the possible numbers of adults living in Newcastle with ASD up to 2031. This information is detailed in the table below. However, it is important to remember that this data is, at best, a rough approximation.

The above table illustrates the administrative prevalence of ASD in Newcastle, as recorded through Special Education Needs statements, for Children and Young People. Administrative prevalence is increasing although it is unclear whether this is due to actual increased prevalence or improved detection. Although the data shows a steady increase in prevalence figures as ages increase, the drop between ages of 12-16 requires further investigation. It is expected that prevalence would increase as ages increase as ASD is sometimes not diagnosed until the teenage years.

Information about the number of children and young people in Newcastle known to Children’s Services provides a useful insight into possible future trends relating to the prevalence of ASD.

The data focuses on children and young people, aged 0-16 years of age, who require school based interventions to assist with learning difficulties and figures suggest a ASD prevalence rate in this group of 0.43% (in 2008). Although the prevalence rate is lower than that of the national average , the rate in 2004 was 0.02%, indicating a significant increase in the numbers of children and young people diagnosed with ASD in Newcastle which, in time will impact on the numbers of adults in Newcastle with ASD.

There are currently 65 adults with an ASD and an IQ below 70 who are known to Newcastle Adult Services, of these 64 people are receiving support of some kind . This indicates a prevalence rate of 0.003%. This is substantially below the Newcastle projection of 2,245 (0.98% prevalence rate) above and indicates that there is likely to be a group of adults with ASD unknown to Newcastle City Council who may need support. 

Targets

National indicators

 

1.  NI 136 People supported to live independently through social service (all ages) (*35 target LAA)

This indicator measures the number of people living independently as a result of services provided or commissioned by adult social care.

2. NI 130 – Social Care clients receiving Self Directed Support (Direct Payments and Individual Budgets) (*35 target LAA)

This measure provides us with additional insight into the degree to which Adult Social Care enables service users to exercise choice and control.

3. NI 142 - Number of vulnerable people who are supported to maintain independent living

This indicator measures the number of people sustaining independence as a result of Supporting People funded long-term services or floating support.

The Sustainable Community Strategy and Local Area Agreement (2008-11) for Newcastle upon Tyne highlights the performance measure and targets for indicators 136, 130, 142 in Figure 1:

Figure 1 – Local Area Agreement targets

Performance

National Indicators

Other achievements

The JSNA for adults with learning disabilities outlines significant progress made in several areas, including the strengthening of partnership working and the numbers of people with learning disabilities known to services registered with a GP. However, we have identified that there is a need to identify and consider the needs of adults with ASD separately from the wider adult learning disability population.  

 

 

Local Views

There are several forums through which people with learning disabilities are able to express their views, for example, Learning Disability Partnership Board, Skills for People.

As above, we have identified a need to identify and consider the needs of adults with ASD separately from the wider adult learning disability population and ways in which adults with ASD are consulted and involved. 

National and local strategies

National

The future strategic drivers for work surrounding ASD by Local Authorities are currently being debated on a national level. A private member's bill that would put a legal duty on councils and NHS services to meet the needs of people with autism is currently progressing through parliament. Concurrently, government proposals for “statutory guidance”, rather than legislation, to improve provision of services have been launched in the shape of a National Autism Strategy. Whichever approach is formally adopted it will likely outline two key responsibilities; a duty to have detailed prevalence figures, and illustrate that needs are being met for these individuals.

‘Better services for people with an autistic spectrum disorder’ (2006) clarifies existing policy as it applies to adults with ASD.

The policies it addresses are: 

• Fair Access to Care
• Valuing People
• National Service Framework for Mental Health
• Our Health, Our Care, Our Say: a New Direction for Community Services
• Improving the Life Chances of Disabled People
• NSF on Long Term (Neurological) Conditions

From these it explores the following themes for people with ASD:

1. Responsibility & Funding –gaps created by traditional service boundaries have been identified and joint working protocols (covering assessment, diagnosis, joint working arrangements, care pathways and decision making based on ‘best interest’ principles) are recommended.

2. Commissioning – The responsibility of the Director of Adult Social Services (DASS) and/or the Director of Public Health. Needs analysis should be undertaken using local data about local people, and:

• Have a person centred commissioning strategy that creates support solutions for each individual person;
• Use this individual information to build a picture of the total local population of people with ASD;
• Actively develop local providers so that they know how to provide individualised services;
• Set an expectation that providers work in partnership with both other providers and other agencies.

3. Assessments and reviews – need to be co-ordinated and result in a written plan. National policy also places emphasis on using family carers and users’ expertise in assessment, arranging services and service monitoring. Services may need to be imaginative in creating ways to engage people with an ASD in these processes.

4. Monitoring and regulation - Monitoring systems, standards and practice should be adapted to ensure they are responsive to the needs of diverse groups of people. Presently, only a few extend to monitor things that matter to people with an ASD.

5. Service provision - People with ASD are entitled to receive direct payments and individual budgets in the same way as everyone else. It is thus expected that there will be a growing number of people with ASD who will take up this option and purchase their own services provision. From 2007, following implementation of the Mental Capacity Act, individuals must be assumed to have capacity to make decisions about services provided or offered to them unless it has been demonstrated otherwise. This includes people with an ASD and those who may not find it easy to express their choice in words.

6. Community Integration and Employment Support - Local supported employment and other specialist employment services should have the competence to support people with ASD into paid work.

7. Family carers – the expectations and imperatives are the same as for carers in any other area.

8. Health & Specialist Services – this section particularly highlights the importance of diagnostic services to families and the need for services to work together.

9. Workforce development - Policy requires that local workforce development plans include reference to people with a broad range of needs – this will include staff to support people with an ASD.

10. Transition & Emergencies - Meet the statutory requirements to commence transition planning from the age of 14.

11. Involving People with ASD. Decision Making, Consultation and Advocacy - Policies emphasise the importance of involving people and their families in planning. This works best when planning processes are adapted to help people get and stay involved.

12. Equality - Understanding ASD as an equality issue is vital. Furthermore, all equality issues affecting the general population apply to people with an ASD, however little is known about ASD in minority populations.

The above summary provides the ‘headline’ from each theme. The report deals with each in detail with a number of specific suggestions and recommendations.

Local

In addition Valuing People Now (2008) is clear that:

 ... the policy outlined applies directly to those people with autistic spectrum disorders who also have a learning disability. Many of the approaches outlined also work well for people who have higher functioning autism and do not have a learning disability. For example, personalised approaches should be used to commission and provide services, in line with good practice described in Better services for people with an autistic spectrum disorder. (p68)

Citizens First, three year Strategy for the Learning Disabilities Partnership Board, organised the objectives of Valuing People into nine themes. The Health theme includes:

• Refocusing specialist services (such as services for People with an autistic spectrum disorder) provided to people with learning disabilities to fulfill the principles of Valuing People.

This will help to provide synergy between Autism developments with the Valuing People agenda. 

Current Activity and Services

Evidence suggests that it is important to note that intensive, early intervention approaches can be beneficial as there is a general consensus among professionals that early intervention is crucial to helping a child with ASD to reach their potential and to reduce subsequent reliance on services . In particular, approaches combining early diagnosis, housing, independent living, supported living, supervised group living, respite provision, social /recreational /exercise opportunities, employment support, living support, outreach, day provision and services available throughout the week (including evenings and weekends) are useful.

Service models that include guidelines and structures regarding expectations for appropriate and inappropriate behaviour include systems or materials that can help individuals to comprehend and predict the flow and sequence of activities. Models that focus on the development of functional skills, such as language and managing complex situations, can also be beneficial. Cognitive Behaviour Therapy, Music Therapy, Picture Exchange Communication Systems and Visual Schedule have all been used, with some success, to support adults with ASD.

Social care

Current services commissioned by Newcastle City Council include supported housing, residential care, care-management co-ordination and specialist diagnostic provision.

Newcastle Adult Services with PCT partners is part of the Autism Services Development Group (North of Tyne) whose aim is to ‘…contribute to the development of a regional strategy assisting in highlighting local issues in service to the North East Autism Consortium (NEAC) and to represent the views of key stakeholders…’ This has included a first stage needs analysis which has identified 15 people with autistic spectrum disorders within the ASD Learning Disability (LD) service user population. Further investigation suggests there are 65 adults with ASD known to adults services in Newcastle. People in this group currently access a mixture of mainstream LD and externally commissioned specialist services for autism. As a result of this work, a need for greater differentiation of available responses, and a greater volume of autism specialist services has been identified; which will enable us to facilitate more personalised packages of care. (Source: SAS Spring 2008 p18). More detailed analysis of this data will help to inform a citywide Autism Commissioning Strategy.

Health care

In recent years, there has been a substantial increase in both interest and research into ASD. Notwithstanding this, it remains a complex and constantly developing area in terms of our understanding of the condition and provision to support those with ASD. We are investigating how to gather information on health care services provided to this group.

Robson et al (2008) in analysing PCT expenditure shows the PCT expenditure on learning disability as a whole. In 2006/07, Newcastle PCT spent more per 100,000 population than comparable PCTs.  

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.