Memorandum from the National Autistic
Society (DDB 44)
SUMMARY
INTRODUCTION
1. Autism is a developmental disability
that affects the way a person communicates and socially interacts
with, and relates to, other people. There are a number of diagnoses
that are used to describe the condition clinically: Asperger syndrome
or high-functioning autism are often applied to those at the more
able end of the spectrum, whilst Kanner syndrome or classic autism
are often used to describe those at the less able end. These descriptions,
as presented in individuals are not absolute—some will demonstrate
high levels of ability in some aspects of their lives and low
levels in others. All individuals who have autism however will
have difficulty with social interaction, social communication
and imagination—the now universally recognised "triad
of impairments".
2. The draft Disability Discrimination Bill
if passed in its current state would provide a welcome enhancement
to the lives of many individuals with a disability, including
people with autism. However, The National Autistic Society has
serious concerns about two particular issues:
— the definition of disability for
the purposes of the legislation; and
— the extent to which, and the speed
with which the essential changes relating to discrimination in
modes of transport will be implemented.
3. The National Autistic Society also wishes
to comment on two other areas that it recommends the Bill should
cover:
— employment—inclusion of a power
for employment tribunals to order re-instatement/re-engagement;
and
— education—inclusion of general
examining bodies and school governors.
DEFINITION OF
DISABILITY
4. The DDA 1995 does not adequately cover
the difficulties faced by individuals with autism relating to
the effects of their impaired ability to socially interact and
communicate. Nor does the draft Bill remedy this situation. Also
the Guidance issued under sub-section 3(3) of the DDA does not
mention autism at all.
Recommendations
5. It is recommended that:
— a new ability be included in Schedule
1 paragraph 4(1) of DDA 1995 to cover "social interaction
and communication"; and
— the associated Guidance and Code(s)
of Practice be revised to take account of the inclusion of this
new ability.
TRANSPORT
6. Inaccessible public transport is a major
barrier to inclusion for people with autism. The lack of accessible
transport options literally reduced mobility for some people with
autism, who are confined to their homes as a consequence. Less
visible access issues are being neglected as the debate around
accessible transport focuses on making transport accessible for
people with physical disabilities.[20]
Last year a National Autistic Society survey found that over half
of people caring for a person with autism described using public
transport as difficult for the person they cared for, with 30%
describing it as very difficult.[21]
Recommendations
7. It is recommended that:
— all transport services should be
included in Part 3 of the DDA immediately;
— part 5 regulations should be amended
to prioritise accessible audio-visual information to customers
onboard vehicles;
— the trigger point for when discrimination
occurs should be lowered to "substantial disadvantage"
so that accessible information would have to be given throughout
a person's journey; and
— the Disability Rights Task Force
recommendations on transport to be implemented in full.
SUBMISSION
THE DEFINITION
OF DISABILITY
IN THE
DDA 1995
Recommendation
That a new ability be included in Schedule 1
paragraph 4(1) of DDA 1995, namely "social interaction and
communication".
Rationale
1. Responding to a request by the Disability
Rights Task Force in 1999, the Disability Rights Commission concluded
that the list of normal day-to-day abilities set out in paragraph
4(1) of Schedule 1 to the DDA 1995 should be revised to include
the ability to communicate with others. Autism is a communication
disorder and the NAS would welcome such a change, but would go
slightly further by including social interaction.
2. The need for change is well demonstrated
by a recent employment tribunal decision (Mr H v Motorola Ltd—heard
on 3 April 2003 and considered by the Employment Appeal Tribunal
on 23 January 2004). The salient facts are as follows. H has a
diagnosis of Asperger syndrome. The tribunal accepted that he
had an impairment at the time of the alleged discrimination, and
that the impairment had a long-term adverse effect on his ability
to interact and communicate with others, but the tribunal (despite
its "considerable sympathy for Mr H") felt obliged to
hold that Mr H's ability to interact and communicate with others
could not be taken into account as social interaction and communication
were not listed in paragraph 4 of Schedule 1 to DDA 1995.
3. On appeal, a "purposive" approach
was taken, the EAT holding that ability 4(1)(g)—"Memory
or ability to concentrate, learn or understand"—was
apposite in that someone who has difficulty in understanding normal
social interaction between people, and/or the subtleties of human
non-factual communication, could be regarded as having their "understanding"
affected and that the concept of understanding was "not limited
simply to an ability to understand information, knowledge, or
instructions".
4. Many employment law practitioners have
long worked on the premise that this broad approach to the concept
of understanding was the correct approach, but it has also been
long recognised that the approach might be stretching the ordinary
and natural meaning of the words in question, as now demonstrated
by the first known challenge in this recent case. The EAT decision
is helpful, but may be distinguished or not followed by another
EAT or by a higher court.
5. The law should be as certain as reasonably
possible, and the inclusion of the proposed additional "ability"
in the Act, together with appropriate revisions to the Guidance
would put the matter beyond doubt.
DDA GUIDANCE
Recommendation
That the Guidance be revised to add at C20 the
ability to interact socially with others and to include in the
list of examples an inability to understand metaphors and an inability
to read non-verbal social gestures such as facial expressions.
Rationale
6. The Disability Rights Task Force said
in 1999 that:
"There is a common misconception that
disabled people are only those with mobility difficulties or sensory
impairments".
7. We believe that it is important to clarify
that Asperger syndrome is a clinically well recognised disorder
and people with Asperger syndrome have by definition "clinically
significant impairments in social, occupational or other important
areas of functioning"[22]
describes those people with an autistic spectrum disorder who
have average to high IQ[23]
and often relatively good expressive language skills.
8. Autism is often a hidden disability and
this is particularly true of those with Asperger syndrome. This
can mask their underlying, and potentially devastating, impairments.
This is well illustrated by the closing remarks of the Chairman
in the Mr H tribunal:
"Indeed Mr H was highly articulate and
effective in the giving of his evidence before the tribunal".
This highlights a lack of awareness of the nature
of this condition amongst professionals.
9. As a matter of law, the Guidance issued
under sub-section 3(3) of DDA 1995 must be taken into account
by a tribunal when considering whether or not an Applicant has
a disability for the purposes of that Act. It is therefore important
that the Guidance is as comprehensive as possible. There is no
mention of autism in the current Guidance.
10. People with autism have great difficulty
in understanding non-verbal signals and unwritten social rules
that others understand instinctively. The proposed amendment to
the Guidance would reflect this phenomenon.
TRANSPORT
Recommendation
That:
(a)
All transport services should be included in Part
3 of the DDA immediately.
(b)
Part 5 regulations should be amended to prioritise
accessible audio-visual information to customers onboard vehicles.
(c)
The trigger point for when discrimination occurs
should be lowered to "substantial disadvantage" so that
accessible information would have to be given throughout a person's
journey.
(d)
The Disability Rights Task Force recommendations
on transport to be implemented in full.
Rationale
11. The National Autistic Society supports
the Joint Learning Disability Submission to the committee, which
includes a section on our concerns regarding inaccessible transport.
Inaccessible public transport is a major barrier to inclusion
for people with autism. The lack of accessible transport options
literally reduces mobility for some people with autism, who are
confined to their homes as a consequence. Less visible access
issues are being ignored as providers focus on making transport
accessible for people with physical disabilities. Last year a
National Autistic Society survey found that over half of people
caring for a person with autism described using public transport
as difficult for the person they cared for, with 30% describing
it as very difficult.
12. From 1 October 2004, under the current
DDA legislation, transport service providers will be required
to make changes to their physical features but only if it makes
it "impossible or unreasonably difficult" for someone
with a disability to use them. The draft Disability Discrimination
Bill will mean that transport services will be included in Part
3 of the DDA for the first time. However, the physical features
of the vehicle would still be left under Part 5 of the current
law.
13. Putting transport services under Part
3 of the DDA would mean that people like bus and taxi drivers
would need to have disability awareness training. If public transport
staff were better aware of the needs of those with non physical
disabilities, more people with autism would be able to travel
independently. The National Autistic Society does not believe
that putting transport services under Part 3 of the DDA places
too much burden on operators. We believe there is an urgent need
for effective disability awareness training for the whole transport
industry because we are aware of ongoing examples of discrimination
against people with autism. One example involved a man with autism
who had a freedom pass[24]
was refused access to a bus because the driver did not believe
he was disabled and therefore did not think he was entitled to
a freedom pass. This highlights the need to raise awareness of
non physical disabilities amongst professionals.
EMPLOYMENT—RE-INSTATEMENT
Recommendation
That employment tribunals be given the power
to order re-instatement or re-engagement in DDA cases.
Rationale
14. Employment Tribunals are not currently
able to order re-instatement or re-engagement. The Government
has agreed that such a provision should be included in the Act,
but it is not currently included in the draft Bill. The current
consultation paper relating to employment tribunals[25]
also fails to address this issue.
15. The National Autistic Society is firmly
of the view that this omission should be rectified. Whilst recognising
the practical difficulties inherent in an Order to re-instate
or re-engage, the power should be available to tribunals in the
same way as it is available in cases of unfair dismissal. Not
to do so may in itself be seen as discriminatory.
16. An actual example illustrates the difficulties
that can be faced under Part IV of the Act. Mr S was a university
student on a nursing course. Students were only permitted to undertake
the course if they were medically able to undertake a career in
nursing. At an occupational health check, Mr S disclosed his diagnosis
of Asperger syndrome. The physician took the view that the fact
of diagnosis alone precluded Mr S from pursuing a nursing career.
The university excluded Mr S. This appeared to be blatant discrimination,
but no claim under the DDA 1995 could be pursued as Schedule 1
paragraph 4(1) appeared to preclude proceedings.
17. Mr S, who might well have proved to
be a good nurse and certainly had his heart set on a nursing career,
was seemingly removed from his professional training due solely
to his disclosure of a diagnosis of Asperger syndrome. The proposed
change to Schedule 1 paragraph 4(1) may or may not have helped
Mr S on the specific facts, but access to the law should not have
been denied and this is a case when the power to order re-instatement
might well have been appropriate as financial compensation would
have been inadequate for the loss of a career as opposed to a
job.
EDUCATION
Recommendation
That the Bill cover:
(a) General Examination Bodies.
Rationale
18. The recently published SEN Strategy
states "inclusion is about much more than the type of school
that children attend: it is about the quality of their experience;
how they are helped to learn, achieve and participate fully in
the life of the school." However we believe that without
legislation to protect the rights of pupils during the examination
process, many pupils with special needs will miss out on the opportunities
enjoyed by others. Under current law, schools have a duty to take
reasonable steps to ensure that do not put children with disabilities
at a substantial disadvantage. However, examination boards are
still not covered by the DDA, which means their behaviour cannot
be challenged under the DDA and which can lead to difficulties
for pupils at exam time. The real life example below outlines
the problems that pupils with autism can experience and how these
may be overcome. The NAS is concerned that the special arrangements
that people with autism sometimes need to take an examination
are not as well recognised as the arrangements required by those
with a physical disabilities. Given that autism is a communication
impairment, it may be necessary for a pupil with autism to have
questions put to them in a certain way, for example using non
figurative language.
19. Skill, the National Bureau for Students
with Disabilities has urged the Scrutiny Committee to recommend
to Government that the draft Bill should include general examination
bodies. The National Autistic Society supports this recommendation.
20. "I can't imagine anyone anywhere
having anything good to say about your son"[26]
Whilst there have been very positive developments in education
in the form of the Special Educational Needs and Disability Act
2001 and the Government's Strategy for Special Educational Needs
(SEN), comments such as the one made by a headteacher recently
shows that there is a pressing need for autism-specific training
for teachers.
21. A National Autistic Society report found
that between 2002 and 2003, 19.8% of the appeals registered at
the Special Educational Needs and Disability Tribunal (SENDIST)
concerned pupils with autism, although children with autism make
up only 4.6% of the total population of children with SEN in England
and Wales.[27]
REAL LIFE
EXAMPLE
A Special Educational Needs Co-ordinator (SENCO)
was concerned that a task in the English SAT for Key Stage 1 would
discriminate against two Year 2 pupils with a diagnosis of Autistic
Spectrum Disorder (ASD). The English SAT set a writing task requiring
pupils to write a story about a flaw in a person's character and
the consequences of this. The SENCO was concerned that this would
be discriminatory because people with ASD have difficulties understanding
the feelings or behaviour of other people and imagining the consequences
of their own or other people's behaviour. The writing task required
both the ability to understand the behaviour of other people and
its consequences. As pupils with ASD do not possess this understanding
because of their disability the pupils were being denied an equal
opportunity to display their true writing level.
The SENCO contacted the Disability Rights Commission
(DRC) to ask whether they viewed the writing task as disadvantageous
to pupils with ASD on the grounds of their disability. The DRC
suggested that the SENCO should write directly to the Qualifications
and Curriculum Authority (QCA) for advice. The QCA agreed to set
an alternative writing task for the pupils with ASD. They were
asked to write a description of a person who behaved in a way
that they will never forget. The QCA contacted all Local Education
Authorities to inform them of the alternative task.
22. The above example shows how small changes
can help pupils with autism to access the same curriculum as their
peers. No particular pathway that will suit all pupils with ASDs.
The key principle is that each individual affected by autism must
be helped and supported to make a choice appropriate to their
needs and aptitudes. Moreover, it is essential that pupils with
autistic spectrum disorders (ASD) have fair and equal access to
the range of qualifications available to their non-disabled peers.
23. The National Autistic Society Advocacy
for Education Service is aware that some Local Education Authorities
(LEA) are failing to fulfil their duties under Part 4 of the Education
Act 1996. An LEAs failure to fulfil these duties undermines a
child's right to access appropriate educational provision.[28]
This could therefore constitute breach of the LEA's disability
discrimination duties as a public body if the child meets the
definition of disabled for the purposes of the DDA.
VOLUNTEERS
Recommendation
That the Bill cover disabled volunteers.
Rationale
24.
Volunteers with autism make a very important contribution
to the work of the National Autistic Society and we would like
to see them covered by the Bill. We therefore support the Disability
Rights Commission's recommendation 10.4.6[29]
to extend the enabling power to cover volunteers as per the Task
Force's recommendation which stated that "Organisation engaging
volunteers should be consulted on the preparation of guidance
and power taken in civil rights legislation to bring volunteers
into coverage through regulations."
February 2004
20 Rights in Reality, Broach et al,
National Autistic Society, London; 2003. Back
21
Rights in Reality, Broach et al, National Autistic
Society, London; 2003. Back
22
DSM-IV, American Psychiatric Association, 1994. Back
23
There are a few people diagnosed with Asperger syndrome who have
mild learning difficulties but generally the diagnosis tends to
be used to describe those without intellectual ompairment (ICD-10,
DSM-IV). Back
24
A freedom pass entitles disabled people to free travel on London's
public transport. Back
25
Employment Tribunals: consultation on draft revised regulation
and rules, DTI, 2003. Back
26
Comment made by Headteacher to a parent who attended NAS Help!
Programme, 2003. Back
27
Autism and education: the ongoing battle; National Autistic Society,
2003. Back
28
Autism and education: the ongoing battle; National Autistic Society,
2003. Back
29
Memorandum to the Joint Committee of the Draft Disability Discrimination
Bill; Disability Rights Commissions; February 2004. Back
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