Autism

Autism is a lifelong development disability that affects how a person communicates with, and relates to other people.  It also affects how they make sense of the world around them.

Autism is a spectrum condition which means that, while all people with autism share certain difficulties their condition will affect them in different ways.  Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support.

Types of autistic spectrum disorders (ASD)
There are three different types of ASDs:

1. Autistic disorder (also called "classic" autism)
This is what most people think of when hearing the word ‘autism’.  People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviours and interests.  Many people with autistic disorder also have intellectual disability.

2. Asperger syndrome
People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviours and interests. However, they typically do not have problems with language or intellectual disability.

3. Pervasive developmental disorder – not otherwise specified (PDD-NOS – also called "atypical autism")
People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.

Signs and symptoms
ASDs begin before the age of 3 and last throughout a person's life, although symptoms may improve over time.  Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later.  Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:
not respond to their name by 12 months
not point at objects to show interest (‘point at an airplane flying over’) by 14 months
not play "pretend" games (pretend to ‘feed’ a doll) by 18 months
avoid eye contact and want to be alone
have trouble understanding other people's feelings or talking about their own feelings
have delayed speech and language skills
repeat words or phrases over and over (echolalia)
give unrelated answers to questions
get upset by minor changes
have obsessive interests
flap their hands, rock their body, or spin in circles
have unusual reactions to the way things sound, smell, taste, look, or feel.

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1. What are the key issues?

The Autism Act 2009  places two key duties on the Government:
1. To produce a strategy for adults with autism; and
2. To publish statutory guidance by December 2010

The Strategy focuses on five things:
1. Making sure that more people understand about autism
2. Making it easier for adults to get a diagnosis of autism
3. Ensuring adults with autism can choose how they live, and get the help they need to do this.
4. Helping adults with autism to find jobs
5. Helping local councils and health services to write plans so that adults with autism who live in their area get the help they need.

The legislation and initial strategic planning in Teesside has identified the following priorities that have been incorporated into local action plans:
1. Training for front line staff in health & social care;
2. Identification of people with autism;
3. Provision of diagnostic and assessment services for people who may be autistic;
4. Planning for adult services;
5. Engaging parents and carers in the development of services for people with autism; and
6. Engaging people with autism in the development of services.

The outcome of the project to develop a Tees Autism Strategy will give clearer definition to the local needs.


Think Autism: updating the 2010 adult autism strategy

Identified 15 things to make things better for people with Autism:

An equal part of my local community
1. I want to be accepted and people to understand my condition
2. I want to be able to change things that matter to me
3. I want to know what is going on locally
4. If I need a service I would like people to make some adjustments
5. I want to feel safe in my community
6. I want to be seen as me

The right support at the right time during my lifetime
7. I don’t want to have to wait a long time for people to diagnose me
8. I want autism to be included in local strategic needs assessments
9. I want staff in health and social care services to understand that I have autism
10. I want to be supported through big life changes
11. I want somewhere my family can go to get help if they need it 
12. I want people to recognise my autism and adapt the support they give
13. If I break the law, I want the criminal justice system to think about autism

Developing my skills and independence and working to the best of my ability
14. I want the same opportunities as everyone else
15. I want support to get a job and support to help me keep it.


Think Autism – innovation fund

There are three key areas in this update and a focus to deliver change:

  • People with autism to really be included as part of the community.
  • Promote innovative local ideas, models which will support early intervention or crisis prevention
  • A focus on how advice and information can be joined up better for people

The government has made available £4.5 million to support the delivery of some of the key themes through a time limited Autism Innovation Fund to help drive creative and cost effective solutions.  There are four areas, aligned with the priority challenges in the report, where proposals will beinvited:

  • Advice and information;
  • Gaining and growing skills for independence;
  • Early intervention and crisis prevention; and
  • Employment, particularly involving the use of apprenticeships.

Proposals need to demonstrate the following core characteristics:

  • Involvement of people with autism;
  • Innovation, including either technology or innovative service design or provision;
  • Partnership: an integrated approach to local services and/or partnership with local businesses, employers or other services.

 

Last updated: 28/01/16

2. What commissioning priorities are recommended?

2012/01 - remains a priority
Improve access to good housing by developing schemes for people with autistic spectrum disorders.

2012/02 - remains a priority
Provide specialist employer support services to improve access to employment for people with autistic spectrum disorders.

2012/03 - replaced by 2015/01
Implement a specialist advocacy service for people with autistic spectrum disorders, and explore NAS accreditation.

2012/04 - replaced by 2015/02
Implement guidance contained within the Autism Act 2009 to meet the needs of people with autistic spectrum disorders.


2015/01
Implement a specialist advocacy service for people with autistic spectrum disorders
, and explore NAS accreditation.

2015/02
Implement guidance contained within the Autism Act 2009, and Think Family
to meet the needs of people with autistic spectrum disorders.

 

Last updated: 28/01/16

3. Who is at risk and why?

Approximately 1% of the population are estimated to be on the Autistic Spectrum.

Age
Autistic spectrum disorders (ASDs) are lifelong conditions commonly diagnosed in early childhood.  There is no change in risk with age.

Gender
Five times as many males as females are diagnosed with autism.  The proportion of males as opposed to females diagnosed with autism varies across studies, but always shows a greater proportion of males. Fombonne at al (2011) found a mean of 5.5 males to 1 female.


Socioeconomic status
ASDs occur in all socioeconomic groups.

Ethnicity
ASDs occur in all ethnic groups.

Genetic and familial predisposition
Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.   Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.   ASDs tend to occur more often in people who have certain genetic or chromosomal conditions. About 10% of children with ASDs also have been identified as having Down syndrome, fragile X syndrome or other genetic and chromosomal disorders.

Autism and learning disability
Between 44% and 52% of people with autism may have a learning disability.  Research findings on the proportion of people with autism spectrum disorders who also have learning disabilities (IQ less than 70) vary considerably as they are affected by the method of case finding and the sample size.

Around one-third of people with a learning disability may also have autism.

 

Last updated: 28/01/16

4. What is the level of need in the population?

By applying the 1% national prevalence estimate to Hartlepool’s population, one would expect to find about 920 people with an autistic spectrum disorder.  This might include approximately 220 children and 700 adults.

Hartlepool’s Autism self-assessment 2011 identified 134 Adults with autism (including Asperger syndrome).

The Department for Education’s analysis of children with special educational needs (2015) found 64 primary school children and 50 secondary school children in Hartlepool with ASDs attending state-funded schools with a statement of special educational needs or at ‘school action plus’.  An additional 31 children with ASDs attended special schools.

 

Last updated: 28/01/16

5. What services are currently provided?

Diagnosis and treatment
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Clinicians look at the child’s behaviour and development to make a diagnosis.  ASDs can sometimes be detected at 18 months or younger. However, many children do not receive a final diagnosis until much older.  This delay means that children with an ASD might not get the help they need.

There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development.  Services can include therapy to help the child talk, walk, and interact with others.  Therefore, it is important to involve clinicians as soon as possible if a child has an ASD or other developmental problem.  In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Local authority services
Hartlepool Borough Council currently provides housing, care and support to about 140 adults with autism.

A review of autism services across Teesside was undertaken during 2011/12 with a view to informing commissioners on further service provision.

All people who are eligible for community care services will undertake a self-directed assessment questionnaire linked to a resource allocation.  The resource allocation will be linked to their assessed need via a support plan.

Specialist care and support
Where specialist care and support is required a Tees-wide autism framework agreement is in place.  This is a collaboration between four Tees local authorities and identifies eight providers of care deemed to have the skills, competencies and knowledge to work with adults with autism.

Support groups
Two active support groups exist within Hartlepool:

  • Hartlepool Autism Self-Help Group
  • Autism Rights Group Hartlepool

Autism partnership board
The board is a multi-agency forum that brings together commissioners and the autism community to identify local priorities and enable a more strategic approach to developing better outcomes for people with autism.  This is carried out through the Teesside Autism Strategy Development Group (TASDG), a sub-regional network of organisations interested in improving service provision in Teesside.

The group provides support and tracks progress on the Department of Health's 'fulfilling and rewarding lives' guidance 2010.  The sub-regional network monitors the Hartlepool Local Autism Action Plan and reports progress to the North East Autism Consortium.

Employment
Hartlepool Borough Council provides a supported employment team.  The Learning Disability & Mental Health employment link team is accredited through the National Autistic Society (NAS).  This service helps employers, educational providers and welfare agencies to increase opportunities for people wishing to return to work.

Day care provision
Warren Road day service and the 'sunflower lounge' are accredited by the National Autistic Service (NAS) and operate a range of day care provision for adults with autism. The service can be accessed by referral from a care manager.


 

Last updated: 28/01/16

6. What is the projected level of need?

Current estimate show that about 20% of adults and 35% of children with ASDs are known to the local authority in Hartlepool.  There is no forecast increase in the number of people with ASDs, but identification of people currently unknown to services is likely to lead to an increased need for those services.

The number of adults with autistic spectrum disorders is forecast to remain similar (550 in 2012 to 546 in 2020) (PANSI, 2012).  There is no forecast available for children or adults aged over 65.

Hartlepool estimated autistic spectrum disorder age 18-64, 2012 to 2020

 

Last updated: 27/03/14

7. What needs might be unmet?

Hartlepool Borough Council has engaged with people with autism with a view to identifying what is working, what is not working and what needs to change.  This process, known as Working Together for Change (WTfC) is a tried and tested approach to coproducing change with local people and harnessing the energy and intelligence from that process to drive commissioning and service development activity.

WTfC can help to make better use of scarce resources, improve productivity and lead to better outcomes for people by ensuring services provide the things people want and need in the way that makes most sense to them.

It goes significantly beyond consultation, towards empowering people to play a leading role in determining the changes and improvements they want to see. It has been recognised as national best practice and is being used across the country in a wide variety of settings as a tool for delivering inclusive change.

It is estimated that approximately 1 in 100 people has Autism, for Hartlepool this could be as many as 920 people based on local estimates.  Over 140 people are currently in receipt of services, so as many as 760 people could be living in Hartlepool with an autistic spectrum disorder without any support.

 

Last updated: 28/01/16

8. What evidence is there for effective intervention?

Autism national strategy

Fulfilling and rewarding lives: The strategy for adults with autism in England (Department of Health 2010).

 

NICE guidelines

Autism: the management and support of children and young people on the autism spectrum.  (clinical guideline 170, 2013)

Autism: recognition, referral, diagnosis and management of adults on the autism spectrum.  (clinical guideline 142, 2012)

Autism: recognition, referral and diagnosis of children and young people on the autism spectrum. (clinical guideline 128, 2011)

Autism (Quality standard 51, 2014)

Antisocial behaviour and conduct disorders in children and young people (Quality standard in development, expected April 2014)

 

NICE pathway

This guidance has been incorporated into a NICE Pathway, along with other related guidance and products.

 

Additional evidence

Improving access to social care for adults with autism. (Social Care Institute for Excellence, 2011)

 

Last updated: 28/01/16

9. What do people say?

In February 2012 information provided by 100 people from Teesside was used in the Working Together for Change process. This was completed to inform and support strategic planning and develop local service provision.

The main messages are that people with autism:

  • want to be understood;
  • want a job;
  • want to choose where I live; and
  • need more local support and provision.

There is a recognised gap in the involvement of people with autism, their families and carers in the development of local services. The Working Together for Change process was an initial step to address this but further work is required.

Further engagement of local people with autism, their families and carers in the identification of issues and development of new services is fundamental to establishing local communities that are accessible.

Over 60% of adults with Asperger syndrome or high functioning autism who responded to an NAS survey in 2007 said that they have experienced difficulties in accessing services.  About half of these (52%) were told that they do not fit easily into mental health or learning disability services.

 

Last updated: 28/01/16

10. What additional needs assessment is required?

None identified at present.

 

Last updated: 28/01/16

Key Contacts

Name: Neil Harrison

Job Title: Head of Service – Adult Social Care

e-mail: neil.harrison_1@hartlepool.gov.uk

phone:01429 523913

 

 

References

 

National Strategies and Plans

Department of Health (2010) “Fulfilling and rewarding lives”. The strategy for adults with autism in England.

 

Local Strategies and plans

Hartlepool Borough Council (2014) Hartlepool Local Autism Action Plan

 

Other references

National Autistic Society (2014). Autism strategy: fulfilling and rewarding lives

Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators (2012) Prevalence of autism spectrum disorders - autism and developmental disabilities monitoring network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report. Surveillance summaries, 61(3), pp. 1-19.

Baird, G. et al. (2006) Prevalence of disorders of the autism spectrum in a population cohort of
children in South Thames: the Special Needs and Autism Project (SNAP). The Lancet, 368 (9531), pp. 210-215.

Blumberg, S. J. et al (2013) Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children: 2007 to 2011–2012. National Health Statistics Reports, No 65.

Brugha, T. et al (2009) Autism spectrum disorders in adults living in households throughout England: report from the Adult Psychiatric Morbidity Survey, 2007. Leeds: NHS Information Centre for Health and Social Care.

Department for Education (2015). Special educational needs in England: January 2015.

Ehlers, S. & Gillberg, C. (1993). The epidemiology of Asperger syndrome: a total population study. Journal of Child Psychology and Psychiatry, 34(8), pp. 1327-1350.

Emerson, E. and Baines, S. (2010) The estimated prevalence of autism among adults with learning disabilities in England. Stockton-on-Tees: Improving Health and Lives.

Elsabbagh, M. et al (2012) Global prevalence of autism and other pervasive developmental disorders.  Autism Research, 5 (3), pp.160-179.

Fombonne, E., Quirke, S. and Hagen, A. (2011). Epidemiology of pervasive developmental disorders. In Amaral D.G., Dawson G. and Geschwind D.H. eds. (2011) Autism spectrum disorders. New York: Oxford University Press, pp. 90 – 111.   Available from the NAS Information Centre.

Gillberg, C., Grufman, M., Persson, E. & Themner, U. (1986). Psychiatric disorders in mildly and severely mentally retarded urban children and adolescents: epidemiological aspects. British Journal of Psychiatry, 149, pp. 68-74.

Gould, J. and Ashton-Smith, J. (2011) Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. Good Autism Practice, 12 (1), pp. 34-41.
Available from the NAS Information Centre.

Green, H. et al (2005) Mental health of children and young people in Great Britain, 2004. Basingstoke: Palgrave Macmillan.

Idring, S. et al. (2012) Autism spectrum disorders in the Stockholm Youth Cohort: design, prevalence and validity. PLoS One, 7(7): e41280

Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, pp. 217-250.

Kim, Y.S. et al (2011) Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168 (9), pp. 904-12.

Lotter, V. (1966). Epidemiology of autistic conditions in young children, I. Prevalence. Social Psychiatry, 1, pp. 124-137.

The NHS Information Centre, Community and Mental Health Team, Brugha, T. et al. (2012) Estimating the prevalence of autism spectrum conditions in adults: extending the 2007 Adult Psychiatric Morbidity Survey. Leeds: NHS Information Centre for Health and Social Care.

The Westminster Commission on Autism (2016). A spectrum of obstacles: an enquiry into access to healthcare for autistic people.

Wing, L. (1981). Asperger's syndrome: a clinical account. Psychological Medicine, 11, pp. 115-129.
Available from the NAS Information Centre

Wing, L. (1991). Asperger's syndrome and Kanner's autism. In: Frith, U., ed. Autism and Asperger Syndrome.  Cambridge: Cambridge University Press.
Available from the NAS Information Centre

Wing, L. & Gould, J. (1979). Severe impairments of social interaction and  associated abnormalities in children: epidemiology and classification. Journal of Autism & Developmental Disorders, 9, pp. 11-29.
Available from the NAS Information Centre

Wing, L. & Potter, D. (2002). The epidemiology of autistic spectrum disorders: is the prevalence rising? Mental Retardation and Developmental Disabilities Research Reviews, 8(3), pp. 151-161.
Available from the NAS Information Centre

Wolff, S. (1995). Loners: the life path of unusual children. London: Routledge.

World Health Organisation.  (1992). International Classification of Diseases. 10th ed. Geneva: WHO.

 

Principal diagnostic ‘labels’ for autism (from National Autistic Society)

 

Autistic spectrum disorders
Commonly used to cover the whole range of conditions that have in common the triad of impairment of social interaction, social communication and social imagination. This triad is associated with a repetitive pattern of behaviour. The social interaction impairment is the most important part of the triad so people who have this on its own can be included in the spectrum. This is particularly relevant for people coming for a diagnosis later in childhood or adult life. They may have learned to compensate for their disabilities in communication and imagination, but the social interaction impairment is still evident even though it may be shown in subtle ways.

Pervasive developmental disorders
This term is used in the International Classification of Diseases, 10th edition (ICD-10) to cover more or less the same range as autistic spectrum disorders.

Childhood autism (ICD-10)
Used when the person's behaviour fits the full picture of typical autism.

Atypical autism (ICD-10)
Used when the person's behaviour pattern fits most but not all the criteria for typical autism.

Pervasive developmental disorder not otherwise specified (PDD-NOS)
This is more or less the same as atypical autism.

Asperger syndrome (ICD-10)
Briefly, this is used for more able people who have good grammatical language but use it mainly to talk about their special interests.

Other labels that are sometimes used for particular patterns of disabilities and/or behaviour that can be found among people with autistic spectrum disorders

Some professionals in the field have picked out particular patterns of disabilities and/or behaviour that can be seen in some people with autistic spectrum disorders, and have named them as separate syndromes. There is disagreement as to whether these so-called syndromes can ever occur on their own without the social communication and imagination impairments that are diagnostic of an autistic spectrum disorder.

 

Non-verbal learning disorder (NVLD)
Study of the criteria for this condition shows that it covers people with the social behaviour pattern of Asperger syndrome, who also have problems with the non-verbal skills of arithmetic and some visuo-spatial skills. Dr Asperger included such people in his descriptions but also included people with social problems who were very good with numbers and visuo-spatial skills.

Right hemisphere learning disorder
The same as non-verbal learning disorder. The non-verbal learning problems mentioned above are mainly located in the right hemisphere of the brain.

Semantic-pragmatic disorder
Good grammatical language but lack of ability to use language in a socially appropriate manner. This pattern is characteristic of the people Asperger described.

Pathological demand avoidance (PDA)
Briefly, avoidance of everyday tasks and manipulative, socially inappropriate, in some cases aggressive behaviour.

 

There is also a list of developmental disorders that are not in the autistic spectrum but often occur together with an autistic spectrum disorder.  These can be found here:

http://www.autism.org.uk/About-autism/All-about-diagnosis/The-use-and-misuse-of-diagnostic-labels.aspx