The National Autistic Society (NAS) is the leading charity for people with autistic spectrum disorders (ASD) in the UK. It has a membership of over 12,000, a network of 60 branches, and works with over 90 partner organisations in the autism field. The NAS exists to champion the rights and interests of all people with autism and to ensure that they and their families receive quality services, appropriate to their needs. There are approximately 15,000 people with autistic spectrum disorders in Northern Ireland. The NAS welcomes this opportunity to comment on the Review of Mental Health and Learning Disability (Northern Ireland).
The NAS is pleased that there is a whole section in the report dedicated to 'Able adults with autistic spectrum disorders' ie adults who do not have an accompanying learning disability. The report quotes a number of NAS-produced materials including 'Taking Responsibility'1.
'Taking Responsibility' gives guidelines that are designed for local services planning to meet the needs of adults with Asperger syndrome. It is the result of a three-year project (1999 - 2002) funded by the Department of Health to research the service needs of adults with Asperger syndrome. The guidelines cover local services such as social services, education, health and housing. The NAS strongly recommends that the report and review panel implement as many of these guidelines as possible in order to support able adults with an ASD as it addresses the very areas that the report is seeking to tackle.
The NAS Autism Helpline receives approximately 20 calls per month from Northern Ireland. The helpline has a database of professionals who can diagnose autistic spectrum disorders for children and adults. At present they only have details of four diagnostic teams in Northern Ireland, none of whom are able to diagnose adults.
The findings from the Down Lisburn Trust Pilot Project2 showed that the majority (69%) were referred from and already receiving mainstream mental health services.
Para 6.121 states that "one local community trust has established a diagnostic service, specifically for intellectually able individuals who are referred with a query of an ASD."
The NAS is aware that Consulting Psychiatrist Dr P Trimble and Clinical Psychologist Mrs B Pilkingham from the Craigavon Hospital Trust are now involved with diagnosis of adults.
Dr Christine Lavery, Clinical Psychologist of North and West Belfast Trust, is also involved in adult diagnosis.
The Centre for Social and Communication Disorders was set up by The National Autistic Society (NAS) in 1991. It was the first centre in the country to provide a complete diagnostic, assessment and advice service for children, adolescents and adults with social and communication disorders throughout the UK. The staff aim to make a detailed diagnosis and assessment of the skills and disabilities of each person seen and to give advice on services needed.
In addition to diagnosis and assessment the staff run training courses for professionals in the use of the Diagnostic Interview for Social and Communication Disorders (DISCO) for diagnosis and assessment. Part of this course offers an introduction to the complexities of diagnosis of autistic spectrum disorders. Although there is a growing number of local clinics for children where there is an interest in the diagnosis and assessment of autistic conditions, in some areas of the UK there are still no relevant services. Diagnosis and assessment for adults remains a major problem. The main aim of the centre is to support and help develop diagnostic services for children, adolescents and adults country-wide, by working in partnership with statutory organisations.
This measure has been developed by Brenda Nally, NAS, in conjunction with Dr Dougal Hare of the University of Manchester. The new measure is the first of its kind in the UK and takes the form of an interview form. Following a number of questions, it indicates whether an adult should be assessed for a diagnosis of autism or Asperger syndrome, a form of autism. It has been piloted extensively in Greater Manchester and has proved to be a robust and useful tool. It will help many people gain access to a diagnosis and help local services plan to meet the needs of adults with autism. The screening measure will be available online from 28 April atwww.autism.org.uk/screening
Post-diagnostic support for able adults with an ASD
Adults recently diagnosed with an ASD require post-diagnostic counselling support over several months. Although diagnosis usually seems to bring a sense of relief for those old enough to understand what it means, there will be various reactions to having an ASD on a day to day basis.
One thing that can assist most people to adjust and 'come to terms' with diagnosis is information and the opportunity to talk. The exception to this may be people who are diagnosed but denied having any difficulties before. These people may not want to discuss autistic spectrum disorders at all following a diagnosis.
For adults who were not diagnosed until their teenage years, or later, there can be anger about how much time has been 'wasted', how badly they were treated at school, and about professionals who misdiagnosed them.
Therefore post-diagnostic support is an important part of the therapeutic process and should not be rushed. The NAS holds a database of over 80 counsellors experienced in ASD. Unfortunately despite numerous adverts they do not have details of any counsellors in Northern Ireland.
Post-diagnostic support is an important part of the therapeutic process. Individually or in a group, post-diagnostic support should include discussion and information on the following elements:
Paras 6.122 and 6.123 refer to the fact that services and support are "almost non existent for able adults with an ASD as they are usually excluded from learning disability (by virtue of their higher cognitive ability) and from mental health services unless a mental illness is confirmed."
However "a small number have been accepted by services for people with a learning disability as providers currently have nothing else to offer."
To plan and provide services for able adults with an autistic spectrum disorder each local authority should have a classified register of people with an ASD.
Again, 'Taking Responsibility' suggests:
'Tomorrow's Big Problem'3 highlights some of the options available to adults with an ASD relating to housing. The report lists the challenges for the next five years as:
Only 6% of adults with autism spectrum disorders are in full-time paid employment.4 Many people with an ASD are capable of work if they receive sufficient support. However, the reality is that many adults with an ASD are not given the support that they need. This often results in low self-image, feeling undervalued and worthless, and leads to a belief that they are incapable of work. For some this can also result in mental health problems such as depression and anxiety. Not only does this situation need to be changed in order to help adults with an ASD to be citizens who feel fully accepted in society and able to live independently, but it is also uneconomical. 'Failure to transfer the skills acquired through education to the workplace is a clear waste of resources. Continuing and unnecessary reliance on state benefits is also extremely expensive, as are the costs of treating psychiatric disorders relating to long term unemployment.'5
Prospects is the NAS employment and training service for people with autism and Asperger syndrome who wish to work. The NAS Prospects employment consultancy aims to combat some of these barriers and enable adults with autism spectrum disorders to seek, enter and retain work. Employment consultants from Prospects provide ongoing support to their clients in sustaining their job, while offering training to managers and colleagues in working alongside the employee. Many adults with an autistic spectrum disorder want to work, but only those in London, Manchester, Sheffield and Glasgow have access to the intensive support that Prospects offers.
The NAS Prospects employment consultancy currently provides workplace support through the Access to Work programme. However, applications for support and equipment can be time-consuming and complicated. The NAS asks the Government to make applications for Access to Work support and equipment as straightforward and efficient as possible. The process should be made easy for small employers who have fewer resources to deal with bureaucratic and time-consuming procedures.
Employment services for people with ASD have proved very successful. For example, statistics from the Prospects Employment Consultancy show that 67% of their clients found work, 56% on permanent contracts, with a job retention rate of 68%. 98% of Prospects' clients placed in employment were satisfied with their jobs.
The total saving to the exchequer for all those clients who were employed during the period 1 April 2000 to 31 January 2003 was £494,686.6
Ongoing support within the workplace is a crucial factor for people with an ASD. Provision of a mentor to discuss problems or a job coach for support in the workplace will help. The Government's Access to Work scheme could make a job coach's help available. A mentor or manager could give guidance on the social or 'unwritten' issues/rules in the workplace, as these could cause much confusion to someone who does not pick these up intuitively. In some people ASD can be a hidden disability, and the difficulties in communication and social interaction they have could result in others misunderstanding them, therefore training in disability awareness for colleagues benefits both the individual and colleagues.
As part of the NAS employment campaign Undiscovered Workforce, the NAS produced two packs7 & 8 to raise employer's awareness to the attributes employees with an autistic spectrum disorder can bring to the workplace.
The Employment Champion Awards were introduced by the NAS to celebrate good practice employment practice for people with an ASD and encourage other employers to follow these examples. Nominations were made by the employee or anybody connected to the employee. Individuals nominated anybody who felt they had been particularly helpful in supporting a person with an ASD who was in employment or seeking work. The nominations were also able to offer concrete example of 'reasonable adjustments' for people with an ASD in the workplace.
The employment pack 'Undiscovered Workforce: Looking for Staff' advises employers on good practice recruitment techniques, what skills people with an ASD can offer, support available for them as employers, how the Disability Discrimination Act is relevant and where to go for further advice and information. Both publications are available on the NAS website www.autism.org.uk/employment.
The NAS believes that the key to making Jobcentre Plus and other back to work schemes a success for people with autism spectrum disorders is training in an understanding of autism. This does not simply extend to Disability Employment Advisers, but also to occupational therapists, potential employers, GPs and any other professionals who come into contact with people with autism and Asperger syndrome.
They need to have training or access to material to enable them to have an understanding of the nature of ASDs, how this may affect employment and practical ways in which they can be supported. For example, personal work-focused interviews will be of little use unless the advisers understand how to relate to the adult with autism and how to help them through the job application process.
If the adviser has not had training in ASDs, it is likely that these interviews will be extremely stressful and potentially upsetting for the person with autism or Asperger syndrome, due to the nature of their communication disorder. It is paramount that all staff involved in the process communicate with one another and know what has been agreed and planned. Due to a lack of understanding, Disability Employment Advisers often encourage people with Asperger syndrome to apply for jobs that are unsuitable for them. This not only wastes the employer's time, but is very disheartening for the jobseeker who will often not get any feedback on why their applications are unsuccessful.
"I have had six different Disability Employment Advisers: none of them has helped me get a job." (Person with Asperger syndrome)