Autism is a life-long condition interfering with a person’s ability to communicate and relate to others. From data collected in several countries, a form of autism affects up to one in 100 individuals.
Baby Violetta and her family are participating in the British Autism Study of Infant Siblings. Their family believes that research discoveries can in the future help others affected by the condition around the world
Mayada Elsabbagh, Andy Shih, and Eric Fombonne discuss what steps are appropriate at community level.
What is autism?
Autism is a spectrum of conditions that affect a person’s social skills and communication. As early as three years of age, some children with autism have unusual eye contact and are less likely to share attention or interest with others through pointing, smiling, or appropriate language. Some children display stereotyped and repetitive behaviours and may be overly sensitive to sounds or other forms of stimulation. Those who are mildly affected often have no apparent intellectual or verbal difficulties, but still struggle with interpreting others’ expressions or understanding their intentions.
Despite being defined on the basis of behavioural symptoms, autism is a biological condition giving rise to changes in brain development and functioning. Raising awareness about this ‘hidden’ disability is challenging because it is not associated with clear physical symptoms. As a consequence, behavioural symptoms are likely to be missed in primary health care settings. Most families experience a significant delay between the time they become concerned about their children and the time of diagnosis.
The impact varies greatly from one person to another. Some people are able to lead independent and fulfilling lives, but the impact for others can be disabling. While there is no cure, strategies focused on improving quality of life are necessary. Autism seems to present similarly across cultures and contexts, yet we still know very little about the burden of autism in different communities and countries around the world.
Scientific understanding of autism has dramatically changed in the last decades and continues to change rapidly. Global public awareness of the condition has also increased significantly. However, there is still a wide gap between public awareness and the extent to which available services are validated scientifically. The gap appears wider in developing countries where research capacity is limited and health professionals and the public have little or no contact with research.
Where significant progress has been made at community level in different countries, three complementary approaches have undoubtedly brought about positive change in improving quality of life for families affected by autism. These are bridging the gap between evidence and practice, community awareness, and partnerships among various stakeholders.
Bridging the wide gap between evidence and practice
Less than 30 years ago, an influential theory posited that so-called ‘refrigerator mothers’, described as cold, distant and rejecting, were to blame for causing autism in their children. In most of North America and Europe, psychoanalytic therapy for the mothers and placing their children in institutions formed standard clinical practice. Now, advances in research have contributed to a striking shift in acknowledging that autism is a biological condition, and there is consensus that autism is a result of interactions among genetic and environmental factors.
Autism may be difficult to identify for those with limited experience and in some communities relevant information is not always accessible or accurate. Yet, understanding the condition is vital because it enables families and practitioners to provide a supportive environment, helping people with autism to cope and giving them opportunities for interaction and learning. Because autism affects people differently, interventions need to be individually customised, but there are some general principles such as providing structure and predictability in the environment, fostering independence and new skills, and engaging the family.
Promoting awareness within the community
Communities who combat stigma and misconceptions against disabled people benefit from their skills and competencies instead of marginalising them as a burden to society. People with autism are often able to reach their full potential when they are treated with dignity and respect and supported by their family and community. In most communities where improvements have taken place, it was the families of those affected who spearheaded changes in policy and practice through tireless activism, fundraising, and lobbying.
Promoting awareness about autism encourages families to seek help from health practitioners if they are concerned about their children and to access available services or support groups. It also encourages health workers to take parental concerns seriously and help families to distinguish symptoms of autism from general developmental difficulties, some of which may be short-lived. More targeted awareness activities among health and education workers are essential in communities where service development is still under way. This would prevent a situation where concerns are inadvertently raised in peoples’ minds without providing them with concrete solutions.
Partnerships
Organised grassroots efforts led by families have provided impetus and drive for change. Family support and advocacy groups in some countries have flourished into large-scale national organisations that continue to effect real and positive change. Similar grassroots efforts are increasingly visible in low- and middle-income countries. The success of the groups rests on their ability to engage a wide range of stakeholders and reach out to the public at large.
Priorities in research, policy, health services, education, vocational training and family support, are all essential components in the process of supporting individuals with autism throughout their lives. Coordination and partnerships guarantee their overall success. Collaboration among government agencies and advocacy and professional organisations enhances feasibility and long-term sustainability of such partnerships.
International partnerships are also growing in the area of autism. These partnerships are essential for translating evidence into practice and allowing different communities to learn from each other. Forming strategic partnerships among countries with different cultures, levels of expertise, and existing service infrastructure is critical for achieving this goal.
Mayada Elsabbagh, Birkbeck, University of London, UK & Montreal Children’s Hospital, Canada
Andy Shih, Autism Speaks, United States
Eric Fombonne, Montreal Children’s Hospital, Canada
www.worldautismawarenessday.org
www.autismspeaks.org
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Filed under: Public engagement in health research Tagged: | autism, awareness raising, community engagement, evidence
