Select Committee on Work and Pensions Written Evidence

Memorandum submitted by National Autistic Society

  1.  The National Autistic Society (NAS) is the leading charity for people with autism (including Asperger syndrome) in the UK. It has a membership of over 12,000, a network of 60 branches, and 90 partner organisations in the autism field. The NAS is in a unique position to comment on issues affecting people with autistic spectrum disorders because it operates in all four nations of the UK. 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 535,000 people with autistic spectrum disorders in the UK.

  2.  The NAS's employment agency—Prospects—is the only specialist agency supporting people who have autism into mainstream jobs. They have a very successful record of helping people find and retain work, for example, 67% of the clients they supported between 1995-2003 found work (and they cater for a very wide range of referrals that come through Jobcentre Plus and the New Deal for Disabled People programme). Furthermore, 70% of the pilot scheme's beneficiaries from 1995-97 were still in employment in 2003. The right jobs are being secured for the right people and the ongoing specialist support and advice ensure jobs have a high chance of success. They currently support around 300 people through centres in London. Sheffield, Manchester and Glasgow.


  3.  Autism (including Asperger syndrome) is a lifelong developmental disability that affects the way a person communicates and relates to people around them. People with autism experience three main areas of difficulty—known as the triad of impairments.

    —  Social interaction: Difficulty with social relationships, for example, appearing aloof and indifferent to other people. Although many people with Asperger syndrome do want to be sociable and enjoy human contact, they still find it hard to understand non-verbal signals, including facial expressions.

    —  Social communication: Difficulty with verbal and non-verbal communication, for example, not fully understanding the meaning of common gestures, facial expressions or tone of voice. Difficulty also with attributing thoughts and belief to others. While people with Asperger syndrome may speak fluently, they may not take much notice of the reaction of the people listening to them; they may talk on and on regardless of the listener's interest or they may appear insensitive to their feelings. Despite having good language skills, people with Asperger syndrome may sound over-precise or over-literal—jokes can cause problems as can exaggerated language, turns of phrase and metaphors.

    —  Imagination: Difficulty in the development of interpersonal play and imagination, for example having a limited range of imaginative activities, possibly copied and pursued rigidly and repetitively. People may also have difficulty with sequencing, organising and planning ahead. While they often excel at learning facts and figures, people with Asperger syndrome find it hard to think in abstract ways.

  4.  Autism is a spectrum condition so, although everyone with autism will have a combination of these difficulties, the characteristics will vary greatly and some may be demonstrated more strongly than others. The implications of this should be considered in the development of policy.

Simon's employers used to send him out on errands, delivering urgent letters to City firms. Simon enjoyed these duties and performed them punctually but he got extremely upset if delays on the bus or Underground interfered with his schedule.  A parent


  5.  It is estimated that there are about 332,600 people of working age in the UK with autism and of this number an estimated 259,500 are thought to be of average or above average intelligence. NAS research by Barnard et al (2001) has shown only 6% of all people with autism are in full-time paid employment, and only 12% of those with high-functioning autism or Asperger syndrome have full-time jobs.[42] This proportion is much lower than the general figures for the employment status of the seven million people of working age with disabilities, let alone the population as a whole.[43]


  6.  The NAS believes that changes to Incapacity Benefit, and benefit and employment policy more widely, should be designed with the following general principles and aims in mind:

    —  A full understanding of the range of disabilities and the possible impact of different disabilities on the potential of individuals to successfully secure and retain employment should underpin policy development.

    —  Policies should take into account that some disabilities are lifelong and that those people who need it should receive continuing support when in employment.

    —  Those employed to support people in finding and retaining work should have a detailed understanding of the disability of those they are working with—in particular Jobcentre staff and their representative agencies.

    —  For some disabilities, it should be acknowledged that specialist employment providers are an essential part of helping an individual find and retain work.

    —  Those judging the effect of a disability on an individual's life should have a detailed understanding of that disability and, in particular, how it affects that individual's ability to find and retain work.

    —  Any change to the system of benefit payments is accompanied by appropriate, ongoing and effective assistance to both find and retain work.

    —  The wishes of the individual are taken into account when considering what types of employment are suitable. This might mean that in some circumstances there is an advocate to help an individual express their wishes.

    —  The value of work is recognized for its own sake and so the benefits of assisting people to find and retain full time work, part time work, voluntary work and training and apprenticeships towards employment, are acknowledged and support provided.

    —  Incentives in the system should be to enable those who are able and wish to work to be supported to do so, if appropriate.

    —  People who are not in work—either because they are looking for work or because work is unlikely to be an option—should receive appropriate financial support.

    —  The affect the process has on the individual—therefore assessments should not be burdensome and should only be undertaken as necessary.

    —  The importance of choice must be considered throughout.

  7.  In addition to the above, we have concerns that without sufficient funding, the benefits of the processes put in place to help people find work will not be realised or will be lost in the long term. We believe that the funding support offered to employment service providers who are delivering to beneficiaries on behalf of the DWP and Jobcentre Plus should reflect the real costs involved. There should also be recognition that different specialist providers will have different costs depending on the disability in question and the needs therefore arising.

  8.  Targets and funding issues should not prevent those with more complex needs also accessing support. We are concerned that people who may need more specialist and ongoing support do not always receive that support because it is easier to meet targets by focusing on people with less complex needs.


  9.  The information below considers some of the aspects of the proposed reforms to Incapacity Benefit, as discussed in the DWP's five year plan.

  10.  The Personal Capability Assessment (PCA): This will remain a critical element of the claiming process. Any revision of the test is an opportunity to ensure that it is able to fully capture the experiences of people with autism. It is a frequent complaint that assessments such as these are not appropriately designed to account for the needs of people with autism and as a consequence it is felt that the difficulties an individual with autism may have are not sufficiently taken account of.

  11.  The health professional involved in the PCA often has little or no understanding of autism and how it impacts on the day to day lives of people. This leads to inappropriate, confusing and irrelevant questions and as a result the PCA does not reflect the true experience of those adults with autism.

    "Being autistic I do not show how I really am and I was worried I would be called in for an assessment and I would say I am very well thank you and they would say you start work next week and then I would be unable to manage it."

  12.  Disability and Sickness Allowance/Rehabilitation Support Allowance: As above, it is vital that the categories are able to fully reflect and account for the experiences of people with autism.

  13. Rehabilitation Support Allowance: Autism is a lifelong condition. The NAS believe that the name of this element of the benefit should be rephrased to account for the fact that people who will not be "rehabilitated" can, and should be, supported to find work. People with autism think in concrete terms and they may conclude that as they cannot be "rehabilitated" that they are not entitled to services labelled as such.

  14.  It is also important that when developing policy it is acknowledged that as some conditions are lifelong, some people may require support on a long term basis.

  15.  The role and functions of Personal Advisers: Personal Advisers are a major element of the planned reforms and if the changes go ahead along the lines suggested in DWP's five year plan, Personal Advisers will be pivotal to the success of any changes. The current design for a Personal Adviser gives them the right to decide not only what type and level of work related activity is appropriate, but also to decide whether an individual has fully engaged with the process.

  16.  As autism affects an individual's capacity to communicate, they may be perceived as not co-operating with the Personal Adviser when that behaviour is a consequence of their condition. A Personal Adviser working with someone with autism must have considerable understanding of the condition. Personal Advisers should also work with those with specialist knowledge of the disabilities that people they are working with have, including specialist employment providers and others who are able to advocate on behalf of the individuals, where communication is a problem. Where specialist support is needed it should be adequately paid for by DWP/JCP, in order to ensure the viability of the specialist services on whom they are calling.

  17.  Based on past experience, the NAS is concerned that Personal Advisers will simply not receive sufficient training in the different disabilities they are working with, and that this will be of significant disadvantage to people with autism. More than a few hours of training is required. The NAS recently undertook research into the role of Disability Employment Advisers. This showed while 86% of DEAs replied that they had supported clients diagnosed with an Autistic Spectrum Disorder (ASD) only 33% felt they had sufficient knowledge to support clients with an ASD to find work. The report concluded that DEAs want and need more training about autism if they are to be able to support people with autism to find and retain work. We remain concerned that this lack of sufficient knowledge and confidence for supporting this group of individuals, coupled with a lack of proper recognition and resourcing for specialist services, will ensure the ongoing inability of individuals with autism to successfully access support services and ultimately employment.

  18.  Sanctions for those on Rehabilitation Support Allowance who refuse to engage: We are concerned that people with autism could lose part of their benefit because they are deemed to be not engaging. In reality, this apparent lack of engagement might be a consequence of the individual having autism. The nature of autism means that people can find it hard to understand cause and effect, for example, they may not understand the importance of explaining that they are unable to attend, may not understand the relevance of the interview or may feel to anxious to use public transport to get there. Some may not understand the link between the interviews and the benefits they receive. They are unlikely to be able to answer many of the questions put to them adequately, especially if they are of an abstract or hypothetical nature. There may be a need to think innovatively about how interviews are conducted. This point is linked to that above, of the importance of training Personal Advisers and other key specialists, and of ensuring the viability and expansion of specialist services which can help DWP staff to assess and meet the needs of these clients.

  19.  The role of GPs: GPs potentially have a significant impact on the experience an individual has during the benefit process. The knowledge and understanding a GP has of autism is necessary factor to a successful outcome for an individual with autism. An NAS survey, "GPs on Autism", 2003, found that many GPs were ill-equipped to recognise the diagnostic symbols for autism. 42% of GPs said they did not have sufficient information to make an informed assessment about the likelihood of a patient having autism. This underlines the importance of training not only for GPs but all the professionals involved in the process. Consideration could be given to involving other professionals who do have a close relationship with the individual and who have an understanding of the impact their condition has on their lives.

  20.  In DWP's five year plan it stated that "Health professionals need to start from the point of view that getting people back to work is likely to benefit their long term health". This ambition by DWP actually reinforces the need to take account of the fact that many of the people on Incapacity Benefit will have a lifelong disability.

  21.  Appeal rights: There needs to be a credible appeal process with support and advocacy available, encouraged and funded.

  22.  Eligibility: It is not yet clear whether or not the new benefit will be contributory or not. This could be particularly significant for people with autism, as it is a lifelong disability. We believe Incapacity Benefit should be non-contributory.

Mia Rosenblatt

3 October 2005

42   Barnard J et al (2001). Ignored or ineligible?: the reality for adults with autistic spectrum disorders. London: NAS. Back

43   Office for National Statistics (2004). Social trends no 34. London: Stationery Office. 49% of people were in employment in 2003, compared with 81% of people who are not disabled. Back

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