AUTISM: General Information sheets: NEVDGP

Developed by the Centre for Community Child Health & Ambulatory Paediatrics Royal Children's Hospital, Melbourne for the Victorian Government Department of Human Services. April 97

Autism is a lifelong pattern of disability of biological origin as classified in DSM-1V (Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association). Essentially the child presents with deficits in communication and social skills, poor imitation and problem-solving abilities and a distinctive pattern of obsessive, ritualistic behaviours. Sometimes there is evidence of abnormal sensory processing.

Identified in 1943 by Professor Leo Kanner, autism was initially referred to as Early Infantile Autism, or Kanner's syndrome. Initially the condition was believed to be caused by poor parenting, but it is now recognised that this is definitely not the case.

Studies over the past 20 years have demonstrated variations in the characteristics and severity of autism, now referred to as a spectrum of autistic disorders. In 1995 the National Association for Autism (Australia) officially adopted the use of the term Autism Spectrum Disorders. It includes the diagnoses of Autism, Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified. This spectrum of autistic disorders includes a range of children, from those who are intellectually above average to those who are very low functioning. Most children with autism spectrum disorders have intelligence levels in the intellectually disabled range.

Clinical Manifestations

There is no specific test to diagnose autism. The clinician uses skilled observation and a detailed parent interview to ascertain a pattern of behavioural and developmental characteristics, which leads to a provisional diagnosis of autism. Behavioural indicators would include:

Using the DSM-1V incidence, autism occurs in 2 - 5 in every 10,000 children.

Autism spectrum disorders have more recently been suggested to be 10 in every 10,000. Boys are three times more likely to be affected.

The causes of autism spectrum disorders are not clearly understood. It is likely to be a heterogenous condition with different causal factors operating in different groups of cases. In very few children the clinical syndrome of autism is associated with chromosomal or single gene disorders: fragile X, phenylketonurea, tuberose sclerosis, or neurofibromatosis; in others with infections, for example, congenital rubella; and in others with evidence of diffuse brain dysfunction (believed to be due to a physical or chemical fault affecting the developing brain). It is now well established that it is not related to parental personality or child-rearing practices.

An experienced clinician such as a child psychologist, paediatrician or child psychiatrist can make a provisional diagnosis of autism in a child as young as two years. To satisfy the DSM-1V diagnostic criteria the condition must be present before three years of age. For most, a diagnosis at three years is possible. For a child with good language skills, diagnosis may be difficult until age five or older.

The definitive diagnosis should be made on the evidence produced by a thorough multidisciplinary assessment, which ideally includes a psychologist, paediatrician or child psychiatrist, speech pathologist and other allied health professionals. This assessment may include:

Ideally, these assessments are performed by a team, who then meet to determine a diagnostic conclusion and prepare a detailed report of the child's strengths and weaknesses with recommendations for management and appropriate programs, following discussions with the parents.

Role of the Parents

The involvement of the child's parents is critical to the assessment process. Irrespective of the diagnosis, the parents' role in assisting their child's additional needs is paramount. From an early age, the child needs a highly structured and predictable lifestyle, with consistent teaching at home and in an educational setting that is sensitive to the child's needs. Parents report that early intervention programs equip the family with skills that enabled them to better manage their child in any setting.

Role of Primary Health Care Professionals

Even before a diagnosis of autism has been made, parents usually have significant concerns about the child's development. These concerns should be acknowledged as legitimate and positive assistance offered, for example:

When To Refer for an Assessment

Parents' early concerns are not usually specific. Common concerns include suspected hearing loss, delayed speech, developmental delay and social withdrawal. These signs can be assessed without yet suggesting a diagnosis of autism. Often the maternal and child health nurse may refer a child to Specialist Children's Services (SCS) for a speech assessment. Later on, further concerns lead to a more detailed assessment by the SCS team and a referral to an autism assessment team may be suggested.

The professional needs to consider a balance between referring at the earliest signs of the possible existence of autism and the understandable desire to wait until the signs are more certain. The literature overwhelmingly advises professionals to listen carefully to parental concerns.

Parents generally desire to know what condition is suspected. The advisable approach is to report the aspects of the child's development that are of concern and recommend a thorough assessment. If parents raise the diagnosis of autism, then a thorough assessment should be aimed to assess for this and for a communication disorder.

Management generally consists of a variety of co-ordinated therapies aimed at providing a structured environment and improving communication skills.

Many pharmacological treatments have been trialled with children with autism with no evidence of any specific therapeutic effect; however they may provide some assistance in the treatment of specific symptoms for example, depressive illness in adolescence or in coexisting morbidity such as Tourette's syndrome.

Behavioural therapy focused on positive reinforcement of desirable behaviour has been shown to be successful in improving socially appropriate behaviour, self-help skills and communication. It has also been helpful in reducing inappropriate behaviour such as aggression, self-injury and obsessional behaviour.

Provision of a structured environment at home and school is another major focus of care. Children with autism often have varying degrees of intellectual disability, which impacts on general level of function and educational abilities.

In Victoria, there are specific schools that provide early intervention programs and educational programs for children with autism. Some children attend these schools but others attend regular schools with assistance through the Department of Education, Independent Schools, or the Catholic Education Office's Integration Program.

Differential Diagnosis

Autism can co-exist with other disorders, the most common being intellectual disability and epilepsy. The assessment process should eliminate other possible causes such as fragile X syndrome, sensory disorders, speech and communication disorders and some uncommon medical conditions.

Long-Term Outcomes

Children with autism maintain their problems with social interaction and communication throughout adulthood, as this is a lifelong disorder. Some adults with autism will live independently but most will require a structured environment in a community setting.

Gillberg and Coleman. The Biology of the Autistic Syndromes, 2nd edition. London, Mac Keith Press, 1992.

Schopler and Mesibov (ed.), Diagnosis and Assessment in Autism. New York, Plenum, 1992.

Wing. Early Childhood Autism: Clinical, educational and social aspects, 2nd edition. Oxford: Pergamon, 1976 (1996).

Howlin and Rutter: Treatment of Autistic Children, Chichester, Wiley, 1987.

Written by Autism Victoria with expert opinion from Professor Margot Prior, Psychologist, Royal Children's Hospital.

The aim of this case study is to provide an example of good practice in the diagnosis and management of a child with autism.

Mother presents to her maternal and child health nurse concerned abut her three-year-old son's development, specifically because he:

The maternal & child health nurse, agreeing with the mother, suggests the mother contact Specialist Children's Services, Department of Human Services. As part of the assessment, they suggest seeing a speech pathologist, a paediatrician and an audiologist.

The speech pathologist commenced the assessment looking at the boy's speech and language. All aspects raised concern about the child's ability to interact. Developing rapport with him was difficult.

A paediatrician was consulted and a complete developmental history was sought from the mother and a physical and neurological examination made of the child. The paediatrician:

Agreed with concerns that there seemed to be an unusual pattern of development and behaviour.

Suggested these may be consistent with autism and emphasised that a comprehensive assessment would be necessary before further diagnosis could be made.

Noted that the developmental delay could be explained by other causes, which must also be investigated.

The paediatrician also:

Arranged for further medical examination, hearing and vision tests. The mother's report of 'absences' prompted the request for an EEG for possible seizure activity.

Referred the case to an Autism Assessment Team for a full assessment.

Emphasised that the parents should, in time, make contact with the Department of Human Services Specialist Children's Services regional team for ongoing therapy.

The mother had great difficulty following this advice, as it was too much too soon. Consequently, several months went by before she accepted the referral to the Autism Assessment Team. The child was then on a waiting list of an autism assessment for at least six months. The hearing, sight and EEG tests showed no apparent abnormalities. By this stage, the child's behaviour had deteriorated markedly.

The local doctor noted the mother's stress levels, and encouraged the contact with community-based services. Very general information about autism was given to the mother and it was suggested that she contact a parent support group. Within four weeks, a case worker from Specialist Children's Services had visited and provided some simple strategies for managing the most difficult of the behaviours.

The Autism Assessment Team finally saw the child during several visits. The assessment process was carefully explained to the parents. The coordinator from this team collated the reports from the key specialists (the paediatrician, audiologist and eye specialist) with their own speech pathology assessment, psychological report, sensory integrative assessment and child psychiatric report. A case meeting was held and a diagnosis of autism was made. The co-ordinator then met with the parents to explain the diagnosis and make recommendations for the action to be taken. A comprehensive written report of the child's assessment and diagnosis was given to the parents. The option was given for a further appointment after the parents had had time to think through the information.

The co-ordinator ensured that the parents had the necessary details to contact the early intervention program and/or an autism specific service in their area and that the Specialist Children's Services case worker had all the necessary details of the assessment and diagnosis. Some information about autism was made available and the parents had the opportunity to ask questions. They applied for the child disability allowance. With the permission of the parents, all professionals involved were given feedback.

At age five, after two years in an early intervention program, the child was enrolled at the local primary school. Significant progress had been made in the two-and-a-half years since diagnosis, but the child still required additional support to enable him to learn in a regular classroom. A psychologist was consulted and further psychosocial testing was done in order to prepare the submission to the Department of Education for additional funding support. This submission was further supported by reports from the Specialist Children's Services case worker, early intervention program staff and the parents.

Continued needs-based support was provided by a family counsellor, the local Home and Community Care in home support program and a consultant teacher from an Autism Special Developmental School. Application has been made to Disability Services for a case worker. The parents were encouraged to keep up regular contact with this service. Being part of a parent network helped the parents enormously. They were well informed and felt less isolated than they had before the diagnosis.

For Further Informtion

Regional Child Mental Health services at:

Royal Children's Hospital/Travancore

Alfred Child and Adolescent Mental Health Service

Austin Hospital Child and Family Psychiatry

Monash Medical Centre Child and Adolescent Psychiatry

Paediatricians specialising in behavioural problems.

Private Services

Paediatricians, audiologists, speech pathologists, and psychologists with experience in autism.

Support and Information for Families

Autism Victoria Tel: (03) 9885 0533.

Autism Family Support Association (as for Autism Victoria).

Local government Home & Community Care services.

For Children Under Six Years

Mainstream services include local child care and pre-school and family day care.

Specialist services include:

Coverdale Early Intervention (Ascot Vale)

Tel: (03) 9370 3500.

Irabina Early Intervention (Bayswater)

Tel: (03) 9720 1118.

Mentone Autistic School Tel: (03) 9584 4033.

Association for Autism and Allied Disorders (Geelong)

Tel: (03) 5226 1420.

Mansfield Autistic Centre and Travelling Teacher Service

Tel: (03) 5775 2876.

Department of Human Services, Specialist Children's Services team in your region.

For School-Aged Children

Mainstream services include local primary schools.

Specialist services include those listed above and Mansfield Autistic Centre and Travelling Teacher Service

Tel: (03) 5775 2876.

Mentone Autistic School Tel: (03) 9584 4033

Bulleen Heights School (Bulleen) Tel: (03) 9850 7122.

Department of Human Services, School Nursing Program in your region.

Department of Human Services, Disability Services Officer in your region.

Department of Education, Special Educational Facilities.

Independent Schools and Catholic Education Office.

Developed by the Centre for Community Child Health & Ambulatory Paediatrics Royal Children's Hospital, Melbourne for the Victorian Government Department of Human Services.

Produced by the Office of the Family, Youth and Family Services Division, Victorian Government Department of Human Services.

North East Valley Division General Practice, Victoria, Australia, Disclaimer
Level 1, Pathology Building, Repatriation Campus, A&RMC, Heidelberg West VIC 3081. .. map
Phone: 03 9496 4333, Fax: 03 9496 4349, Email: nevdgp@nevdgp.org.au,
Please note: NEVDGP does not provide an on-line consultation

AUTISM - Fact Sheets for Health Professionals