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					NAO Report: Comparisons of general & learning disability services for adults on the autism spectrum throughout England

Terry Brugha
Leicestershire Partnership NHS Trust
NHS

Example One:
Adam is 35 years old. He was diagnosed aged five with classic ‘low-functioning’ autism with a learning disability. Adam attended a special school run by an autism charity from age five to 18. Adam is largely non-verbal and sometimes uses a symbol system to communicate with his carers. Adam also suffers from epilepsy, for which he takes medication. Adam lives in a residential placement with eight other residents in a service run by a third-sector organisation. This placement is funded out of area by his home Local Authority, with the contract being agreed on an annual basis. Adam attends the day service run by the same third-sector service provider. Here he takes part in music and art classes, life skills, communication sessions, and physical activity. As well as funding Adam’s residential placement, his Local Authority has also provided funding for 14 hours per week of one-to-one support for Adam as a result of his communication needs. Adam receives Disability Living Allowance, which is used to pay for items such as clothing, social trips and a CD player, as Adam enjoys listening to music. There is a GP attached to the residential service, and Adam is supported to attend annual dentist appointments, as well as consultations with his epilepsy specialist.

Example Three
Carl is 39 years old. He was diagnosed with Asperger Syndrome at the age of 30. Carl attended a mainstream school up to age 18, where he excelled at maths and physics. However, he struggled to make friends amongst his classmates, and the other children frequently told him he was ‘strange’. He went to university away from home at 18, but found many aspects of university difficult, particularly making new friends, organising his time and money, and attending lectures in large, noisy halls. He became very lonely and unhappy, and after one term decided to drop out and return home to his parents. With the help of his tutor, he was able to arrange a transfer to his local university, which allowed him to study for his degree whilst living in more familiar home surroundings. Carl left university with a good degree, but found it difficult to find a job. He found interviews particularly difficult, often not knowing what the interviewer meant or being told that he didn’t ‘come across well’. He remained living at home with his parents, rarely going out and becoming very isolated. He became depressed and suffered a mental health crisis, at which point he was admitted to hospital and misdiagnosed with treatment-resistant schizophrenia. A chance encounter with a consultant psychiatrist who had a special interest in autism led to a revised diagnosis of Asperger Syndrome two years later…

Introductory remarks…
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Around half of people with autism also have a learning disability (sometimes known as ‘low-functioning’ autism), while the rest do not (so-called ‘highfunctioning’ autism, which includes Asperger Syndrome). Current social care policy is based on a ‘social’ model of disability, which emphasises the need for personcentred approaches focusing on individual needs rather than diagnostic ‘labels’. Where our report refers to the terms ‘high-‘ and ‘low-functioning’, this is to reflect differences in services and eligibility criteria…

Adults on the spectrum who can access LD services
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Learning disability is well recognised Relatively clear pathways to care in many parts of England – beginning in early childhood Dedicated specialist LD teams:
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Psychiatrists specialising in LD Psychologists Speech and language therapists OT s, nurses, social care teams

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Good evidence that care continues after families are no longer able to provide support

Adults on the spectrum who can access LD services
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But is autism spectrum disorder recognised in adults (and children) with Learning Disability If not how concerned should we be? What can we learn from the NAO report?

How common is it?
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Studies show male to female ratios of at least 4:1 Two recent large scale child epidemiological studies in GB suggest rates in childhood of 10 per 1,000 but lower in adolescence General population rates in adulthood are unknown but not for long… Rates in adult secondary psychiatric care based on screening are possibly 20/1000 in secondary care and 30 / 1,000 in rehabilitation and forensic services

Main findings of NAO report
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(6) There is scope for better targeted support for people with high-functioning autism/Asperger Syndrome. Such people may not be eligible for the learning disability services available to people with lowfunctioning autism, as well as being unable to access other support services unless they have a physical disability or a mental health problem.

(1.15) Department of Health guidance states that the Director of Adult Social Services in each Local Authority ‘should ensure that it is clear which team, or manager, within his or her staff, has responsibility for assessing and meeting the eligible needs of a range of named client groups’, of which autism is one. While only four per cent of Local Authorities reported that they do not have a named lead service for adults with ‘lowfunctioning’ autism, this proportion rose to 31 per cent for adults with ‘highfunctioning’ autism.

Access to services
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Whilst people with so-called ‘low-functioning’ autism are likely to be eligible for learning disability services, the ‘high-functioning’ group (including people with Asperger Syndrome) are often excluded because they have an I.Q over 70. In the past, some Local Authorities have explicitly ruled out people with Asperger Syndrome from even being assessed for care services.

Conclusions
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Treatment of AS in adulthood is primarily about social care (preceded by diagnosis) and sometimes requires health inputs: behavioural management; cautious use of medication. ‘Lower functioning’ adults on the spectrum have two chances to access care – by having recognised learning disability and by being on the spectrum. Very few parts of England have effective systems in place for identifying and supporting ‘higher functioning’ adults on the spectrum.

NAO Report: Comparisons of general & learning disability services for adults on the autism spectrum throughout England

Terry Brugha
Leicestershire Partnership NHS Trust
NHS


				
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