Memorandum submitted by National Autistic
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 agencyProspectsis
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 difficultyknown
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-literaljokes can
cause problems as can exaggerated language, turns of phrase and
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
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.
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.
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
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 within 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
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 workeither
because they are looking for work or because work is unlikely
to be an optionshould receive appropriate financial support.
The affect the process has on the
individualtherefore assessments should not be burdensome
and should only be undertaken as necessary.
The importance of choice must be
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
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
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
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.
3 October 2005
42 Barnard J et al (2001). Ignored or ineligible?:
the reality for adults with autistic spectrum disorders. London:
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