The Challenges of Autism
Autism is a pervasive developmental disorder (PDD) characterized by deficits in social interaction and communication, and restricted, repetitive patterns of behaviour, interest and activity (McGahan, 2001). In several cases, autism is associated with mental retardation. “Individuals with autism may exhibit hyperactivity; short attention span; impulsivity; aggression; self-injurious behaviours; odd responses to sensory stimuli; eating, sleeping, motor or mood abnormalities; and difficulty comprehending the environment, thoughts, emotions and needs of others (McGahan, 2001: 2).
These characteristics usually appear before the age of three, and boys are four times more likely to develop autism than girls (McGahan, 2001: 8). There is also considerable individual variation in the type and intensity of symptoms.
Although our knowledge of autism disorders has increased steadily over the past decades, researchers, clinicians and the families of autistic children still face many challenges.
The complex causes of autism
There is still no definitive answer to the question of what causes autism. Researchers are exploring a variety of different factors: genetic, medical, neurological and environmental. Many parents and patient associations are concerned about the highly mediatised coverage of a possible link between autism and the measles, mumps and rubella (MMR) vaccine. However, there is no evidence from current studies that support this relationship (Wilson et al, 2003).
Diagnosis: Improved accuracy but problems with access
Both researchers and clinicians agree that early, accurate diagnosis is important to ensure early intervention, which in turn enhances the chances to improve the quality of life, and educational and social success of autistic individuals (http://www.cairn-site.com/en/research2.html). Although the accuracy of diagnostic tests has improved significantly in the past decade, there are still problems with access to these tests. In the province of Quebec, for example, the diagnosis of autism requires evaluations by a number of different professionals (psychiatrists, psychologists, speech therapists and occupational therapists, etc) working within a healthcare system that is already resource-limited, and in a variety of institutions and departments, (hospitals, clinics, schools, etc). In short, the diagnosis requires several complex steps, and parents end up being placed on multiple waiting lists. This situation not only jeopardises early intervention, but also generates considerable anxiety and anguish (Poirier and Kozminski, 2008).
Treatment: Needs versus available treatments and services
Many behavioural, educational, drug and alternative therapies have been developed in an attempt to treat autistic disorders. However, efficacy at generating real and permanent changes in the core symptoms of autism has not yet been rigorously demonstrated for many treatments (http://www.cairn-site.com/en/research4.html). Moreover, as the expression of autistic symptoms varies between individuals, the identification and implementation of an optimal treatment regime is often a process of trial and error. And access to rapid treatment is difficult for the same reasons as outlined above for diagnostic services.
Finally, autism is often accompanied by physical health problems like eating or sleeping disorders, or motor abnormalities. These may require the intervention of specialists like endocrinologists or gastroenterologists, some of whom may not be familiar with PDD or trained to intervene with individuals who exhibit unpredictable behaviour. Unfortunately, many families are left on their own to cope as best they can with the health problems of their autistic children (see our interview with Ms. Lahaie from Autisme Montréal).
Autistic adults: The forgotten ones
Autism cannot be cured. The goal is to mitigate the symptoms in order to improve quality of life. While more and more services are becoming available for autistic children and their families, the reality of adults living with autistic disorders is rarely examined by researchers or society in general. A British study has shown that the core symptoms of autism persist into adulthood. The majority of autistic adults still requires assistance in day-to-day activities and is unable to hold employment or complete schooling (Howlin et al, 2004). The authors highlight the importance of implementing programs and services focused on the specific needs of autistic adults. There are still very few such programs in Great Britain and Canada.
This month, Hinnovic presents the perspectives of parents, clinicians and researchers on autism. These individuals all contribute, in their own unique way, to our understanding of autism and efforts to improve the quality of life of people living with autism.
|Author :||Myriam Hivon, Ph.D.|
Howlin P., Goode S., Hutton J., Rutter M. (2004) Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45 (2): 212-229.
McGahan L. (2001) Behavioural interventions for preschool children with autism. Ottawa: Canadian Coordinating Office for Health Technology Assessment. Technology report no. 18.
Poirier N. et Kozminski, C. (2008) L’autisme, un jour à la fois. Laval : Les Presses de l’Université Laval.
Wilson K., Mills E., Ross C., McGowan J., Jadad A. (2003) Association of autistic spectrum disorder and the measles, mumps, and rubella vaccine: A systematic review of current epidemiological evidence. Archives of Pediatric and Adolescent Medicine, 157 (7): 628-634.