People with autism
Despite the significant strides made over the last decade to reduce inequality across the UK, adults with autism remain socially and economically excluded.
What is autism?
Autism is a lifelong developmental condition, sometimes referred to as autism spectrum disorder (ASD) or autistic spectrum condition (ASC). The word spectrum is used because, while all people with autism share three main areas of difficulty: ‘social communication’, ‘social interaction’, and ‘social imagination’, their condition affects them in different ways. Many people with ASD may experience some form of sensory sensitivity or under-sensitivity, for example to sounds, touch, tastes, smells, light or colours. Many people with ASD may also have other conditions such as a learning disability or attention deficit hyperactivity disorder (ADHD).
What is asperger syndrome?
Asperger syndrome is a form of ASD which includes the main difficulties already explained in ‘what is autism’. People with asperger syndrome tend to have fewer problems with speaking and are often of average, or above, intelligence but may have specific learning disabilities such as dyslexia and dyspraxia.
The term autism spectrum disorder (ASD) will be used throughout this section unless a direct extract from another source is being quoted.
Facts, figures and trends
The Projecting Adult Needs and Services Information System uses Office for National Statistics population projections and estimates of the number of adults with an ASD to project how many people aged 18 to 64 will have an ASD from 2012 to 2020. Around 740 adults in Bracknell Forest are estimated to have an ASD with this figure estimated to rise to around 790 by 2020.
Current activity & services
Prior to and following the development of Bracknell Forest Adult Autism Joint Commissioning Strategy a programme of promoting local awareness of ASD is ongoing.
The trend is increasing numbers of individuals with ASD coming forward for support. Due to the evolving demand a small social care Community Autism Team was set up to respond to the needs of local people with ASD.
As of January 2016:
- there are 108 people being supported by the community autism team (87 in 2015)
- a further 32 young people approaching adulthood between 16 -18 years of age already receiving support from Children’s services are likely to be eligible for support from Adult Social Care Health and Housing (ASCHH) (compared to 41 in 2015)
- there are a further 26 young people aged 14 -16 with an ASD that may be eligible for support from ASCHH (compared to 16 in 2015)
Given the ongoing commitment by the Council and the Autism Partnership Board to raise awareness of autism and promoting local services available to support people with ASD and their families, there is the chance that more adults with ASD will come forward for support from statutory services.
There is an established autism assessment and diagnosis pathway for autism commissioned by the Berkshire Clinical Commissioning Groups (CCGs) and provided through Berkshire NHS Foundation Trust. The number of assessments commissioned does not equate to demand given the number of adults coming forward for an assessment.
It is in light of this and factors such as the need for full accessibility that the assessment and diagnosis pathway is being reviewed, led by Berkshire Healthcare NHS Foundation Trust in partnership with all Berkshire Unitary Authorities and other partners.
The community autism team work closely with the Assessment and Diagnosis team and referrals are made between both services.
Due to the ongoing programme of autism awareness there have been a range of positive developments which has resulted in better feedback from people when using mainstream services such as A4E and Maximus on the Government’s Work Choice programme. Leisure facilities and other places such as the local cinema have also engaged and received training, now providing an offer that is autism friendly. The local college have started a mentor scheme to support integration into college life.
Bracknell Forest Council work in partnership with Wokingham, Bracknell and Districts Mencap to provide social groups for people with autism and Aspergers syndrome.
This includes the “TGIF” Social Group – an evening social group for adults aged 18+ with mild Autism or Aspergers Syndrome which meets twice a month on the first and third Wednesdays of the month, as well as the “Gateway” programme, which is a programme of activities designed to give adults with a learning disability or autism the opportunity to experience real challenges, express creativity, increase confidence & independence and gain a sense of personal achievement.
The Autism Team (as well as universal services who are equipped to make reasonable adjustments) are able to signpost people to other types of support within the community. There are also social groups, Voluntary and Community Sector organisations including access to advocacy, supported employment services and many other ways for adults with autism to access support and services.
National & local strategies (current best practices)
There is a wealth of government policy and initiatives that support adults with ASD, details of which can be found on the website for the Department of Health.
Summaries of the most relevant and recent main documents are as follows:
“Think Autism – Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update” (Department of Health, 2014) Published in April 2014, the strategy stays true to the vision of the original “Fulfilling and Rewarding Lives” but reflects what has been heard from people with autism, and their families since the original strategy was published. It also takes into account the many changes to public services since 2011, including the creation of Health and Wellbeing Boards to understand local health and care needs and the increased emphasis on choice and control for people brought about through the Care Act 2014. The strategy identifies 15 priority challenges following consultation with people with autism, carers and those who work with people with autism. The 15 priority challenges are laid out under three main headings: Having an equal part in the local community; Having the right support at the right time during life and Developing skills and independence.
Implementing “Fulfilling and rewarding lives” (Department of Health, 2010) is statutory guidance for local authorities and NHS organisations to support implementation of the autism strategy. The guidance states that “Local Authorities and NHS bodies should develop local commissioning plans for services for adults with autism, and review them annually”.
Bracknell Forest Adult Autism Commissioning Strategy The Bracknell Forest Autism Strategy supports the recommendations in the national strategy and sets out in detail how it intends to implement the statutory guidance.
The Council uses The Projecting Adult Needs and Services Information System (PANSI) projections, operational information from the Autism Team, and consultations to inform strategic activity.
What is this telling us?
Priorities for people with ASD identified by the Government
Key areas of action identified in the National Autism Strategy ‘Fulfilling and rewarding lives’
- Increasing awareness and understanding of autism among frontline professionals.
- Developing a clear, consistent pathway for diagnosis of autism in every area, which is followed by the offer of a personalised needs assessment.
- Improving access for adults with autism to the services and support they need to live independently within the community.
- Focusing on helping adults with autism into work, via improving access to information, advice and guidance, ensuring adults with autism gain from wider programmes to improve opportunities in the workforce, and providing effective support through the benefits system.
- Enabling local partners to plan and develop relevant services for adults with autism to meet identified needs and priorities, learning from what already works and involving adults with autism in developing those services where appropriate.
The priorities for people in Bracknell Forest are:
- more help with finding employment and more job opportunities
- better access to specialist health services
- help to find suitable housing
- better access to mainstream mental health care services
What are the key inequalities?
There is limited therapeutic support post diagnosis and a lack of specialist health input for adults with autism.
What are the unmet needs/service gaps?
The ranges of needs the autism team have encountered are varied and include following as examples:
- communication support to help individuals better interpret the world and communicate more fully with people
- sensory support where individuals are highly sensitive to stimuli such as noise, light and touch
- mental health problems, anxiety, as well as aggressive and ritualistic behaviours, all of which can contribute to social isolation
- daily/self care support: individuals can often be poorly motivated and have difficulty in sequencing tasks
Access to specialist services would certainly add a strong preventative focus and provide expertise to address particular needs. For example, where individuals have sensory problems an occupational therapist assessment to identify issues and strategies to deal with them could support improvement in health and well being.
Recommendations for consideration by other key organisations
An increase of 7.2% in the population over the next 10 years (to 124,800 people) can be expected and therefore a proportionate increase in the numbers of people with ASD. National research estimates that 1% of the population has ASD. Approximately 15 children born each year in Bracknell Forest can be expected to have ASD.
The table below indicates the expected number of people living in Bracknell Forest with ASD over the next few years. The increase may be more than this as national and local strategies raise awareness of assessment and diagnosis pathways, as well as knowledge of how to access support.
Table 1: Estimated number of people with ASD in Bracknell Forest
|Number of people (all ages)||1155||1199||1248|
|Number of people (18+ years)||882||934||953|
It would be beneficial to create provision for increasing numbers of people with ASD.
- How to secure formalised and permanent input from certain Health skills sets proportionate to need and demand. Individuals can be completely debilitated without such.
- Access to specialist services would certainly impact on crisis interventions but would also add a strong preventative focus.
- Over the next 10 years it is expected there will be an increase in the population of Bracknell Forest and therefore an increase in the numbers of people with ASD. Following national and local campaigns to raise awareness about ASD and diagnosis we can anticipate an increase in demand for assessment, support and funding.