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.
There are three different types of Autistic Spectrum Disorders (ASDs): Autistic disorder (also called "classic" autism); Asperger syndrome; and Pervasive developmental (also called "atypical autism").
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 national autism 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.
Think Autism: updating the adult autism strategy identified 15 things to make things better for people with Autism, within three themes:
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 adjustment’s
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 service’s 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.
These inform the commissioning priorities recommented for Stockton-on-Tees.
2. What commissioning priorities are recommended?
Improve access to local services for people with autistic spectrum disorders including short breaks, community services and residential services.
Implement guidance contained within the Autism Act 2009 and Think Autism 2014 to meet the needs of people with autistic spectrum disorders.
3. Who is at risk and why?
Autistic spectrum disorders (ASDs) are lifelong condition’s commonly diagnosed in early childhood. There is no change in risk with age.
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.
ASDs occur in all socioeconomic groups.
ASDs occur in all ethnic groups.
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.
4. What is the level of need in the population?
Prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. Applying this to Stockton’s population, one would expect to find about 2,150 people with an autistic spectrum disorder.
Stockton’s Autism self-assessment 2015 identified 101 adults with autism.
In Stockton-on-Tees there are estimated to be about 1,175 adults aged 18-64 years with autistic spectrum disorders (ASDs) (PANSI). In addition, about 360 children with autism are known to schools, a similar rate to England and in the middle of rates observed in similar areas.
However, the National Autistic Society states that estimates of the proportion of people with ASD who have a learning disability vary considerably, and it is not possible to give an accurate figure. Some very able people with ASD may never come to the attention of services as having special needs, because they have strategies to overcome any difficulties with communication and social interaction and found fulfilling employment that suits their particular talents. Other people with ASD may be intellectually able, but need support from services, because the degree of social interaction impairment they have hampers their chances of employment and achieving independence.
The Tees Autism Strategy Development Group (ASDG) had developed a regional action plan. Stockton-on-Tees Borough Council has developed an action plan (linked to the Teeswide action plan) which identifies the needs of people with ASD and determines projected care and support needs of young people moving to adult services (Stockton-on-Tees Borough Council, 2011).
The Regional Improvement and Efficiency Partnership (RIEP) and Tees commissioners have supported the development of an ASD strategy which is currently being scoped by the MAIN Project (a local voluntary organisation providing advice, support and services to people with ASD) with support from the National Autistic Society.
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
A review of autism services across Teeside was undertaken during 2011/12 with a view to informing commissioners on further service provision. A day service for people with Autism was set up following this review.
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 eleven providers of care deemed to have the skills, competencies and knowledge to work with adults with autism.
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.
6. What is the projected level of need?
The number of adults with autistic spectrum disorders in Stockton-on-Tees is forecast to decline marginally from 1,175 in 2015 to 1,157 in 2020 (PANSI, 2016). This reduction is due to a forecast reduction of the population in this age group. There is no forecast available for children or adults aged over 65.
7. What needs might be unmet?
Stockton-on-Tees Borough Council has engaged with providers to develop services for Autism day services, Autism respite services and Autism residential services.
Estimates of the number of people with autism in Stockton are much higher than the number of adults identified through self-assessment. There is a need to have an accurate assessment of the number of people with ASDs in Stockton as a baseline for service provision.
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).
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)
This guidance has been incorporated into a NICE Pathway, along with other related guidance and products.
Improving access to social care for adults with autism. (Social Care Institute for Excellence, 2011)
9. What do people say?
No content available
10. What additional needs assessment is required?
No additional needs assessments identified at present.
Name: Liz Hanley
Job Title: Adult Services Lead
Name: Sarah Allen
Job Title: Commissioning Manager
National Strategies and Plans
Department of Health (2010) “Fulfilling and rewarding lives”. The strategy for adults with autism in England.
Local Strategies and plans
National Autistic Society (2014). Autism strategy: fulfilling and rewarding lives
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