Select Committee on Education and Employment Appendices to the Minutes of Evidence


Memorandum from the National Autistic Society (EY 43)

  The National Autistic Society (NAS) is the leading organisation representing Autism and Aspergers Syndrome in 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."


    —  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 Programme—an 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 imagination—the triad of impairments.

Prevalence Rates
People with Learning Disabilities (IQ under 70)
Approx. Rate per 10,000
Kanner Syndrome
Other spectrum disorders
People with average or high ability (IQ 70 or above)
Asperger Syndrome
Other spectrum disorders
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 opaque.

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"[6]. 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[7]. 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[8]. 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[9]. 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[10].

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[11]. 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[12]. 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 as autism.

  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 exist—including 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 services[13]. However, 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 to achieve.

  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[14]. Structure is indeed a core characteristic of the SPELL approach adopted by the NAS in all its schools[15].


  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

January 2000

6   QCA Early Learning Goals p18 Back

7   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

8   Ibid., p8. Back

9   P. Howlin and A. Moore, "Diagnosis in autism: a survey of over 1,200 patients in the UK", Autism (1997) vol. 1, no.2, pp135-162. Back

10   Stirling, A., and Prior, A., Opening the Door, (London: National Autistic Society 1999) p9 Back

11   Ibid. p10. Back

12   Idem. Back

13   February born boy with learning difficulties, QCA Early Learning Goals, p7. Back

14   QCA Early Learning Goals p20. Back

15   Annex not printed. Back

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