By Professor Margot Prior FAPS
Department of Psychology, University of Melbourne
Earlier this year Professor Margot Prior FAPS was invited to present the Keynote address at the National Autism Forum, held at Parliament House in Canberra.
Representatives of associations, support agencies, parents, and service providers from across Australia met to discuss the problems faced by parents with children with autism, and to review the current state of service provision across Australia for these children – with emphasis on early intervention needs and programs. Participants identified their most pressing concerns and spoke passionately about the serious shortage of assessment, treatment, parent support, and educational services for children with autism.
Professor Prior is recognised internationally for her research and clinical work with families, and with children and adolescents with an Autism Spectrum Disorder. This article is adapted from her address.
From very small beginnings in the middle of last century, the story of autism – that ever so puzzling developmental disorder – has become very substantial indeed. We have seen a vast amount of research into all aspects of autism, and the building of a solid knowledge base to guide clinical and educational practice. These days most people know something about autism and its characteristic behavioural, cognitive and communicative impairments, even if they are not familiar with details of diagnosis.
In this article I offer some summary comments on just a few of the areas which tend to currently preoccupy those of us who work in this field, whether we be parents, clinicians, researchers, teachers, service providers or policy makers. These are also areas where important changes have taken place in recent times.
Diagnosis and classification of autism has always been a challenge. We began the story with ‘childhood psychosis’, and ‘disorders of affective contact’, and the ‘classical autism’ of psychiatrist Leo Kanner in the 1940s. After major shifts in thinking and as a consequence of the influence of research findings, iterations of DSM and ICD, which reflect contemporary views of the disorder, have varied over the decades and have affected diagnostic practice in autism. Current views are generally towards acceptance of the concept and the diagnostic term of ‘autism spectrum disorders’ (ASD). This can better represent and encompass the notable individual differences within a population of children termed autistic, and which undermine tidy categorical systems.
Although we agree on the core problems in social understanding and interaction, in communication, imagination, and in restrictive interests, children show very individual profiles and vary in symptoms, severity, and level of functioning. Thinking about autism as involving a spectrum of conditions is an advance in our thinking and much better represents the variety of manifestations of autism that we see, rather than trying to fit children into rigid diagnostic boundaries and boxes. Research continues, nevertheless, in trying to discover differences between autism, Asperger Syndrome, Pervasive Developmental Disorder, and also associations with other related disorders such as Fragile-X Syndrome.
There has been a great deal of debate recently on the apparent increased prevalence of autism, which would lead us to believe that autism is no longer a rare developmental disorder but a relatively common one. For decades the agreed rate was around four in 10,000 children with a male to female ratio of four to one. We now have estimates up to 60 in 10,000, suggesting that autism is one of the most prevalent developmental disorders. The most recent study I have seen, from Britain in 2005, analysed records from the UK GP Research Practice database from 1988 to 2001 (1410 cases). They reported a very large increase of at least 10-fold in first-recorded diagnoses over that time. While better ascertainment of diagnosis of autism (more referred children positively diagnosed with the disorder by clinicians), earlier recognition and diagnosis, more inclusive diagnostic criteria and much greater public awareness of the condition probably contribute substantially to the marked increase, the possibility of a true increase cannot be excluded.
Estimates vary according to methodology, country, populations, time and place. At least one per 1000 is generally accepted for autism with perhaps double that for Asperger Syndrome. But given the wide variation in estimates, and in the context of a spectrum concept of autistic conditions, we cannot be certain of the true rate.
In the meantime, the increased numbers of these extraordinarily needy children and their families require that we attend to the chronic shortage of appropriate provision for their education and care. And certainly we need an Australian prevalence study to examine our own population.
We are still searching for the causes of autism. Vast resources have been invested in trying to find the basis of the disorder. We agree that it comes from a biologically based impairment or set of impairments, but in searching for causes, we seem to be in a pattern of one step forward, one step back, no matter where we look. All levels of ‘causation’ from performance on sophisticated cognitive processing tasks, through to basic neuronal firing patterns, brain anatomy, and gene abnormalities have been, and are being, examined.
Much of the current interest is focused on genetic studies, given the evidence of the higher risk for autism or a related disorder in relatives of affected children, especially monozygotic twins. New reports are emerging every week. Recent reviews of the genetics of autism suggest multiple interacting genetic factors as the main causative determinants of autism. There may be distinct genes and gene combinations in differing individuals. No specific genes or combinations of genes have yet been reliably identified.
Although many claims have been made for the influence of toxic environmental factors (e.g., measles, mumps, rubella vaccine), these claims generally do not hold up to careful scrutiny. That is not to say that there are no environmental influences on the development of autism. Many vulnerability factors exert effects in increasing the risk; but, simple cause/effect relationships are unlikely.
A topic of central interest in the past decade or so has been the concept of Asperger Syndrome (AS). This disorder was first described in 1944 and considered akin to autism, but received little attention until relatively recently. Currently it is generally agreed to represent the high functioning end of the spectrum of autistic conditions, and the diagnosis is usually given to children on the spectrum who are more intellectually able, with quite well-developed language skills and less severe social impairments. Current evidence indicates that children with this diagnosis do not differ from those considered to have ‘high functioning autism’ in social, communication or neurocognitive domains. However, there are some circularities in the diagnostic criteria being used in research studies (e.g., selection of children with good verbal abilities, only to find that the group has good verbal abilities) with consequent effects on research utility and validity.
Many children in schools who were previously not understood, seen as socially isolated, eccentric, odd or learning disabled, are now being diagnosed with AS. Increases in numbers of such children in schools means that we urgently require special knowledge and training for teachers in how to understand, interpret and manage their behaviours, to find ways to teach that fit with their needs and interests, and how best to prepare them for the cognitive, social and employment challenges which await them.
Most children with AS are in mainstream education, and the challenges for them include:
These children are often not adequately supported by state education systems.
Of recent interest are reports of some promising attempts to use Cognitive Behaviour Therapy (CBT) for young people with AS who are more likely to be able to articulate their distress and difficulties in coping with a confusing world.
Treatment, especially early intervention
Diagnosis is happening much earlier these days, and appears to be quite reliable. There is a major increase in children needing early intervention, some of whom unfortunately sit on long waiting lists for services. This is of major concern given their needs at this extremely critical period of brain development and the establishment of the foundations of learning.
There are still problems with differential diagnosis (e.g., with communication/language disorders, intellectual disability, as well as co-morbidities between autism and some other developmental disorders – epilepsy, for example, is a common problem). We need to be cautious and careful about labeling, and to be careful not to tie labels to services in a rigid way, but rather to base services on careful, well informed and inclusive needs analysis. Rigid adherence to diagnostic labels can have unwanted effects in terms of exclusion or inclusion of children from services they all need whatever their official label.
Happily, there is now greater optimism that something can be done to enhance the development of children with ASD whose prognosis has always appeared so poor. Outcomes seem to be improving particularly if appropriate best evidenced education and professional help is available. The earlier intervention is instituted, the better for child and family.
There is now an increase in expectations and expertise; teaching methods are quite well developed with emphasis on intrusion into the child’s withdrawn state, learning how to play, fostering joint attention, pre-language skills and communication skills, and social interaction skills and social rules. Parent guidance, training, and family support are now accepted as a critical part of intervention and education approaches.
Applied Behaviour Analysis/Intervention (ABA) has the best evidence for treatment effectiveness; most other treatment approaches have not been subject to controlled trials of efficacy and follow up outcomes. Various names are being used for this intervention but it involves intensive one to one, consistent skill training, based on learning theory principles and methods, and carried out over many hours per week preferably by skilled therapists in collaboration with parents. It is expensive in time and resources, and relies on huge family commitment and personal investment.
Some of the conditions which are needed for ABA to work well have been documented. These include:
It should be noted that these principles are important in any intervention with severely handicapped children with ASD.
But, ABA does not suit all children and families, and those children with initial higher levels of social and communicative skills are likely to do better no matter what kind of intervention is provided. Very low functioning children appear less likely to make major gains and to fulfill the hopes and expectations of their carers.
Most developments in intervention have been greatly informed and facilitated by research into psychological factors and learning capacities in children with ASD; such as, attention, memory, thinking styles, communication methods, special interests, and behaviour management. These can and should be used to underpin well-targeted teaching practice (e.g., capitalising on visual strengths, focusing on conceptual weaknesses, concreteness and literalness, and managing attention problems).
This knowledge needs to be incorporated into training programs for teachers and other professionals. With the greater numbers of children diagnosed comes an increase in need for more specially trained people with the requisite expertise.
Prognosis in autism has consistently been closely associated with intelligence and language capacity; these remain the best indicators both early and late in development. However, research has also shown that nothing is immutable and that these children change and develop over time despite their handicaps. It has been interesting to note the influence of the now numerous adult cases who have written most feelingly about their lives, vividly describing their early experiences, their struggles and how they managed in a world they found mystifying and frightening. These have provided marvellous insights which have educated the professional community.
Arguments for and against current mainstreaming policies and choices are still lively. Some studies with young children in mainstream schools support inclusion saying that it leads to gains in academic and social domains. Others find few positive and some undesirable effects such as social exclusion, bullying, etc. Not all schools or teachers have the capacity and the motivation to optimise progress for students with the complex mix of problems seen in autism. Highly structured, directive, visually based settings with generous individual support are hard to achieve in normal classrooms, and this is generally what is needed.
Some good models of integration, incorporating ongoing expert support, are being developed, providing support and training for teachers and aides; and for the children, outreach services, respite days, and social skills groups on weekends. Partial integration models with some time in special and mainstream settings can also be an adaptive choice.
Education, training, higher education and employment prospects
Howlin’s review (in Prior, 2003) of this scene in Britain indicates relatively poor prospects for continuing employment for people with ASD. However, it is instructive and encouraging to read of the supportive employment systems which have been developed, including the one currently managed by the National Autistic Society in the UK, which has produced much better results than schemes tried in earlier years. The principles in this scheme include matching jobs to clients, providing alternatives to standard job interviews via such methods as coaching, short term job trials, or written presentations; and job coaching for employers as well as employees. Such approaches can be taken up more widely to deal with this ever-increasing problem as more young people with ASD emerge from their educational institutions, seeking work, identity and independence.
For severely affected, low functioning cases, life-long care and a high level of support will be needed.
Hare, D. (1997) The use of cognitive behaviour therapy with people with Asperger syndrome: A case study. Autism, 1 (2), 215-225.
Prior, M. (Ed.) (2003) Learning and Behaviour Problems in Asperger Syndrome. New York: Guilford Press.
Volkmar, F., Lord, C., Bailey, S., Schultz, R., & Klin, A. (2004) Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry, 45, 135-170.