Memorandum from the National Autistic
Society (EY 43)
The National Autistic Society (NAS) is the leading
organisation representing Autism and Aspergers Syndrome in the
NAS MISSION STATEMENT
"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
Owns and manages six schools offering
day, weekly, termly and 52 week placements (including a nursery
at Radlett Lodge school) as well as 17 residential and day services
for adults with autism.
Runs the NAS Earlybird Programmean
early intervention programme for parents of children with autism.
Autism is a complex developmental disability
that affects the way a person communicates and relates to people
around them. The term autistic spectrum is used because the condition
varies from person to person; some people with the condition may
also have accompanying learning difficulties, while others are
much more able with average or above average intelligence. Asperger
syndrome is a condition at the more able end of the spectrum.
At the "less able" end of the spectrum is Kanner syndrome,
sometimes referred to as "classic autism". Everyone
with the condition has difficulty with social interaction, social
communication and imaginationthe triad of impairments.
|People with Learning Disabilities (IQ under 70)
||Approx. Rate per 10,000
|Other spectrum disorders||15
|People with average or high ability (IQ 70 or above)
|Other spectrum disorders||35
|Total estimated prevalence rate
Choice of an Early Years setting remains dependent upon current
and future local facilities and arrangements in place, and is
characterised by a lack of consistency in response to the needs
of children with SEN, and those of their families. It is partly
for this reason therefore, that the number of cases of autism
reaching the Special Educational Needs Tribunal has risen by 360
per cent in the last four years.
SEN provision remains a question of local priorities. The
way in which the local authorities prioritise their educational
programmes and the status they may or may not give to special
educational needs on an authority and individual level remains
The NAS calls for transparency in LEA provision for SEN
Where there is a child at a profound disadvantage, agencies
should work together. However, despite recognising increased levels
of enthusiasm in government policy for tackling the problems posed
by SEN, initiatives such as early Excellence centres and the Sure
Start pilots have proven disappointing.
No government initiative has yet targeted effectively the identification
and intervention of SEN, as its central focus.
Autism is a developmental and communication disorder, though
many aspects of development in autism will be different from those
found in a normally developing child, rather than simply delayed,
as in some other developmental disorders. People with autism experience
the world in a different way and an understanding of such underlying
differences is essential when dealing with the pre-school child.
Such an understanding is fundamental to appropriate early years
teaching and relevant policies in this regard.
Misrepresentation of the nature of autism in policy is common.
In the QCA Early Learning Goals guidance itself, consideration
is given to "behavioural difficulties, including those with
autistic spectrum disorders".
Subsuming autism with emotional and behavioural difficulties unhelpful
and misleading. "Challenging behaviour" in a child with
autism for example, must be considered as a form of communication,
where a more acceptable means of communication is not yet available
to the child. Likewise, the challenge of the child with SEN is
described in the guidance in the same terms as that of children
from "ethnic groups including travellers, asylum seekers
and those from diverse linguistic backgrounds." Such a global
approach cannot serve the specific needs of children with special
educational needs, and their practitioners.
If the Early Learning Goals are to be relevant and achievable
for children with SEN, it is essential that these children are
identified and diagnosed as early as possible. The benefits of
early intervention for children with special educational needs,
including autism, are now largely accepted.
Without early identification however, children with SEN, including
autistic spectrum disorders will not benefit from the appropriate
teaching to optimise their opportunities for learning. The issue
of identification is the primary concern in the early years setting,
and one that the NAS shares with the other Special Educational
Needs agencies. Problems in achieving effectiveness identification
of need are often identical.
To take the case of dyslexia, pioneering work has been done
which illustrated effectively the cost effectiveness of early
identification. Children were successfully picked up who would
otherwise have drifted through school undiagnosed, missing opportunities
for development through learning. First indications show that
baseline assessment, though successful in identifying a range
of needs, is less successful in identifying social and communication
disorders. Further work is needed to develop mechanisms capable
of picking up the abler end of the autistic spectrum.
The QCA guidance outlines laudable aims for all children,
and the NAS welcomes reference to monitoring and early identification.
However, an emphasis on early identification is insufficient without
a framework that ensures this process. Ideally identification
should take place before the foundation stage, so that the appropriate
support is set up before a child starts to fail or becomes more
confused about the world around them.
Independent research has shown that diagnosis of autistic
spectrum disorders is in practice often very delayed, and that
once received, a diagnosis is followed by little by way of statutory
support services. Similarly,
in the NAS report Opening the Door, it was observed that
parents were waiting an average of two and a half years for a
diagnosis, with 15 per cent waiting between five and nine years,
and 10 per cent waiting over 10 years.
The NAS would support the setting of standards with regard
to early identification, so that all children with an autistic
spectrum disorder should receive a diagnosis by the age of five.
Identification of children with autism must involve all statutory
agencies in contact with the child in the early years, that is
health visitors, GPs, teachers and nursery assistants. The Opening
the Door report showed that in 3 per cent of cases a nursery worker
brought their suspicions of a developmental problem to the notice
of a parent. This compares less favourably to the 10 per cent
of cases brought to the parents' attention by a friend.
Similarly, the report revealed a marked lack of knowledge in General
Practice as to when to refer a child showing signs of delay in
their development. While 9 per cent of parents were led to consider
the possibility that their child had autism by a health visitor,
only 4 per cent of parents had it brought to their attention by
their GP. Continuing
Medical Education needs to address this lack of confidence in
the medical profession in the diagnosis of autism, and to reinforce
the health professional's cross-agency responsibility to children
with special educational needs.
A research team headed by Simon Baron-Cohen of Cambridge
university have devised a simple screening mechanism for use by
GPs, health visitors, and possibly other practitioners. The Checklist
for Autism in Toddlers (CHAT), applied at the 18 month developmental
check, can identify some children with autism before they enter
the early years setting. Though straightforward, the CHAT has
yet to be adopted widely.
Educational practitioners must accept the responsibility,
with health professionals, to ensure fast referral of children
showing signs of a developmental and communication disorder such
The NAS would recommend inter-agency co-operation, between
the LEA and Health & Social Services, who may already have
been in touch with the families of children with SEN. The agencies
concerned should consider joint-training in identification of
SEN, and their respective representation on schools, LEA, education
and library boards (N. Ireland). In addition, all agencies need
to devise mechanisms for effective transfer of information on
each child with SEN, both across-agencies, and within Education
to facilitate smooth transition.
Early identification of special educational needs, including
autism, is essential for the benefits of early intervention to
be exploited. It is now accepted that early intervention is essential
for children with autism and helps to maximise the achievement
of their potential. Early intervention bridges the gap between
diagnosis and school placement. Various models of early intervention
for developmental disorders existincluding Child Development
Centre groups, the Portage Service; the Hanen Program; the NAS
EarlyBird programme for parents; and nursery classes, general
or resourced for special needs. Much early intervention is child
focussed and education based. Some early intervention is autism-specific.
Communication difficulties underlie many areas of development
in the child with autism and will require specialised techniques.
Behaviour problems can be minimised or prevented if appropriate
management strategies, allowing for the underlying triad of social
deficits, are used.
In the QCA Early Learning Goals an example is given
to illustrate the settings a child with a learning disability
might attend before foundation stage involving access to portage
children with an autistic spectrum disorder commonly require a
programme of much greater intensity. It is for this reason, and
because of the absence of such programmes that intensive home-based
programmes such as Options or Lovaas, are increasingly being considered
by parents. Programmes such as the NAS EarlyBird programme, for
parents of children with a diagnosis of autism, are a sensible
investment of time and resources. By empowering the parent with
an understanding of autism, and the skills to manage their child's
behaviours, they will rely less on statutory services, resulting
in long-term cost-effectiveness.
Examples of early intervention schemes operated by local authorities,
and best practice in these areas need to be collected centrally,
evaluated and disseminated throughout England and Wales.
In particular those children being funded in particular schemes
such as Lovaas or Option should be monitored for long term outcomes,
in publicly-funded research, to evaluate the effectiveness of
such programmes, and to determine to what extent of inclusion
the child is capable of at later stages.
The National Autistic Society is keen to develop partnership
with parents. Both early intervention and educational provision
should involve parents in providing for the needs of their child.
This is true for all children with special needs, but especially
for autism, since the difficulties of the triad pervade many aspects
of the child's development, not just academic learning. In addition,
children with autistic spectrum disorder have particular difficulty
in generalising skills learned in one situation (eg school) to
be used in another (eg home).
Therefore the NAS welcomes moves away from the traditional
view of professional as the experts, with all the implications
for the training of practitioners. This is particularly important
for parents of children with autistic spectrum disorders, whose
personal knowledge, combined with the knowledge they develop about
the condition and its implications for teaching and learning,
can provide the best information for teachers for whom this may
well be their first contact with such a child.
As part of the "seamless provision of care" for
the child with autism and its family, diagnosis should be followed
by help for both child and parents; by appropriate education;
and by lifelong support where necessary. The three month NAS EarlyBird
Programme works primarily with parents and helps pre-school children
with autistic spectrum disorder via their parents.
Practicalities impinge upon the realisation of many of the
early learning goals. Class size, the physical environment, practitioner
skills, resources, availability of appropriate resources, availability
of appropriate personnel resources (speech therapy, occupational
therapy, teacher aids) impact on each child with autism's ability
For children with autism, a specific framework needs to be
established to develop teaching strategies and goals that are
specific to them, and relevant to their triad of impairments.
These strategies need to have been assessed to offer the best
chances for our children.
Reference is made in the guidance to the need for structure
for children with autistic spectrum disorders.
Structure is indeed a core characteristic of the SPELL approach
adopted by the NAS in all its schools.
A refinement of processes of identification and diagnosis
is required in Early Years across the range of special educational
needs, including autism. Such an improvement requires not only
systems of identification in place, and professionals trained
appropriately, but government policy where special educational
needs are central, and not simply supplementary.
The National Autistic Society
QCA Early Learning Goals p18 Back
See Jordan, R. et al. Educational interventions for children with
autism: A literature review of recent and current research. London:
Department for Education and Employment, 1998. Back
Ibid., p8. Back
P. Howlin and A. Moore, "Diagnosis in autism: a survey of
over 1,200 patients in the UK", Autism (1997) vol. 1, no.2,
Stirling, A., and Prior, A., Opening the Door, (London:
National Autistic Society 1999) p9 Back
Ibid. p10. Back
February born boy with learning difficulties, QCA Early Learning
Goals, p7. Back
QCA Early Learning Goals p20. Back
Annex not printed. Back