Early detection of handicapping conditions
Autism: recognising the signs in young children
Early diagnosis of autism is important if children are to achieve their full potential, explains Jennifer Humphries
Keywords:autism; autism spectrum disorders; diagnosis; assessment; community nurses
Autism is a developmental disorder affecting children from birth or the early months of life. It results in delay in, and deviance from, the normal patterns of development1. These occur in three areas of behaviour:
Social relationships and interactions
· Language and communication.
· Activities and interests.
When problems occur in all these three spheres of development, and at a deeper level than the usual variations expected in ordinary children, the distinctive pattern of autism becomes evident. In the past there has been confusion over terminology, but experts now consider that children with the triad of impairments should come under the umbrella diagnosis of "autism spectrum disorders" 2,3, which should prompt further in-depth diagnosis. Gillberg2 suggests that the diagnosis of autism should specify additional features such as severity, cognitive level, clinical traits and associated medical conditions.
The incidence is hard to establish because of the problems of diagnosis but the National Autistic Society suggests a possible prevalence rate of almost 1 in 100 people in the UK for autistic spectrum disorders (91 per l0,000) 4.
Although autism is probably present from birth, or very soon after, its nature means that the specific disorders of developmental progression will not necessarily be apparent for many months or even years.
Relationships, communication and activities are immature in all young babies. It is only when they become more sophisticated that delays and deviations from the usual may be evident. Diagnosis is complicated by the variations found in the mental ability of children with autism. About two-thirds have additional learning difficulties and their unusual behaviour patterns may be ascribed to an overall developmental delay. Conversely, autism may be overlooked in children with average and above-average mental ability. Any odd behaviours or abnormalities in development, especially in very young children, may be dismissed as mild or transient.
genetic or chromosomal abnormality
· viral agents
· metabolic disorders
· immune intolerance
· perinatal anoxia5.
These factors can result in other handicapping conditions, which explains why children with autism often have additional learning disabilities and some may have identified medical conditions such as fragile X syndrome, tuberous sclerosis and neurofibromatosis. However, this is not the full explanation as there are children who have damage to the brain as a result of these factors, but who do not have autism. There are also children diagnosed with autism in whom no cause is apparent, partly because the particular neurological impairment necessary for autism to occur has not yet been identified2. In a review, Gillberg 2 noted overwhelming evidence that autism has biological roots but found no single consistent explanation.
Genetic factors were important in some cases, perinatal stress in others, while in certain cases autism could have been produced by a combination of genetic and environmentally-induced brain damage2.
One model by Baron-Cohen and Bolton6 accounts for the uncertainty over the causes of autism by suggesting a final common pathway (Figure 1). This model shows how different causes, some of them unknown, can result in damage to areas of the brain responsible for the development of normal social function. communication and play.
Importance of early identification
Early recognition of the condition also allows families to receive advice and support to help them adjust and respond to the child's difficulties.
Diagnosis of autism is rare before the age of two years and is frequently much later6. It requires comprehensive, specialist assessment, which means primary health care workers being alert to the features of the condition and making the appropriate referral. Attwood9 notes that autism can be diagnosed in children as young as 18 months but in practice this may be hard to achieve, partly because of the nature of the disorder and partly because of lack of knowledge. Unfortunately at present a considerable number of professionals involved with young children do not recognise autism10, although it is hoped that this situation will improve and cases will be referred to specialists at younger ages for early intervention6. Nurses and nursery nurses who work with babies and young children are in a prime position to recognise possible early signs that warrant investigation.
Since about two-thirds of children with autism have other learning disabilities as well, community nurses working with children with learning disabilities may be the first professionals to suspect autism. In children without additional learning difficulties, the health visitor may be the one to recognise developmental delays or deviations from the norms. Community paediatric nurses may also be key health workers in families whose children have experienced pre- and postnatal difficulties that may be associated with autism.
Recognition of characteristics in early childhood
Biographical accounts by parents often emphasise the "normality" of the autistic child as an infant14,15. Yet studies in which parents were asked if there were worries about the child's development in the early months of life suggest that many parents were concerned 12,13. Frith5 suggests that early concerns noted by parents of children with autism can be due to additional learning disabilities rather than to specific impairments associated with autism. In children with autism who have normal intellectual ability, abnormalities in development may occur (or be recognised) only after the first year.
However, there are indications in the usual developmental progress that could suggest autism. Wing16 describes two kinds of autistic infant, the placid, undemanding baby who rarely cries and the reverse, i.e. the screaming baby who is difficult to pacify. She notes that babies with autism may display other behaviours such as rocking, head banging and scratching or tapping at covers when in the pram or cot. They may develop a fascination for shiny or twinkling objects but have an apparent lack of interest in people, animals or traffic for example, when out in the pram. All these signs can, of course, be displayed by both ordinary children and children who have a learning disability unconnected to autism, so caution is needed before interpreting them as signs of autism.
Suggestive symptoms in early childhood
Social development and play
The lack of sharing activity appears to be significant. Frith and Soares's study 13 of 173 responses from parents of children with autism indicate the lack of joint interest and activity displayed by their children in the first year. Babies with autism do not point out things of interest, do not take an active part in playing baby games and do not want to share in activities. These signs were not mentioned by the control group of parents of normally-developing children.
Developmental assessment includes fine and gross motor skills, language, (reception, expression and verbalization), sensory perception, social and emotional development and play. The quality of development is an important feature of the assessment, hence the way skills are used are as important as their presence. For example, a child with autism may have acquired the ability to reproduce words, but not have developed an understanding of their meaning. Or a young child with autism may point to an object but in a non-social fashion rather than to direct another person's attention to it 19 .
Ideally, children should also be observed in their usual environment, at home or nursery. Rating scales may be useful as a screening instrument2,19 but are not considered appropriate as a diagnostic tool2.
The diagnosis of autism is unlikely to be made on the basis of one examination, especially if the child is very young. Close monitoring of progress and regular assessment are essential to enable a full picture to be built up. Regardless of whether a definite diagnosis of autism is reached, children and their parents can be offered help. Babies suspected of having a developmental disorder can receive services for their particular needs and have their progress monitored. Parents can be supported and taught ways to assist their child that are specific for each sphere of the baby's development.
Diagnosis is likely to involve consultation between the unit team, who may include a paediatrician, clinical psychologist, child psychiatrist, speech therapist, play therapist. nurse specialist and social worker. Their role is also to help families to provide appropriate interventions to help the child. These should be based on the unique needs of the individual and will involve assistance with play and social interactions, behaviour and communication. Aarons & Gittens10 recommend early placement in a nursery or playgroup to provide the child with valuable social experience and learning opportunities, and enable the child's difficulties to be clarified. They would like:
"Specialist nurseries to be available where young children with autistic features could attend, even part-time, for continuing assessment . . . expertise in autism could then be centralised in a district, and parents would have access to advice and support10 ."
Davies20 also advocates support for parents. Her study indicated that families of children with autism can be put under considerable strain without such facilities. She notes that the greatest stress appears to be experienced by parents of young children with autism and who have other dependent children.
1. Baron-Cohen S. Debate and argument on modularity and development In autism: a reply to Burack. Journal of Child Psychology and Psychiatry .1992 33(3): 623-629
2. Gillberg C. Autism and pervasive developmental disorders. . Journal of Child Psychology and Psychiatry 1990 31(1): 99-119
3. Wing L. The definition and prevalence of autism: a review. European Child and Adolescent Psychiatry 1993; 2(2): 61-74
4. The National Autistic Society Statistics Sheet. How many people have autistic-spectrum disorders? London: National Autistic Society 1997
5. Frith U. Autism: Explaining the Enigma. Oxford: Blackwell. 1989
6. Baron-Cohen S, Bolton P. Autism: The Facts. Oxford: Oxford University Press, 1993
7. Mays RM. Gillon JE. Autism in young children: an update Journal of Paediatric Health Care 1993: 7(1): 17-23
8. Williams B. Autism. Help for the family. Nursing Times1991: 87(34): 61-63
9. Attwood T. Unusual behaviours associated with autism. Health Visitor 1993; 66(11): 402-403.
10. Aarons M, Gittens T. The Handbook of Autism: A Guide for Parents and Professionals. London: Routledge. 1992
11. Hall DMB, Hill P. Shy, withdrawn or autistic? British Medical Journal 1991; 302: 125-126
12. Gillberg C, Ehlers S, Shaumann H et al. Autism under age 3 years: a clinical study of 28 cases referred for autistic symptoms in infancy. Journal of Child Psychology 1990: 31(6): 921-934
13. Frith U, Soares I. Research into earliest detectable signs of autism: what the parents say. Communication 1993: 27(3): 17-18
14. Lovell A. In a Summer Garment. London: Secker & Warburg, 1978
15. Park CC. The Siege (2nd edn). Boston Mass: Atlantic-Little Brown. 1987
16. Wing L. Autistic Children (2nd edn). London: Constable. 1980
17. Frith U. Baron-Cohen S. Perception in autistic children. In: Cohen DJ. Donnellen AM (eds). Handbook of Autism and Pervasive Development Disorders. New York: Wiley, 1987. pp 85-102
18. Wimpory D. Autism. Breaking through the barriers. Nursing Times 1991; 87(34): 58-61
19. Baron-Cohen S. Allen J. Gillberg C. Can autism be detected at 18 months? The needle, the haystack and the CHAT. British Journal of Psychiatry 1992:161: 839-843
20. Davies J. The role of the specialist for families with autistic children. Nursing Standard 1996: 11(3) 36-40
Jennifer Humphries RN RM RHV BSc MA
Senior Lecturer, Department of Primary and Community Nursing, University of Central Lancashire, Preston
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