Efforts made to raise awareness of autism

There is growing concern about autism in the community. Autism is a neurodevelopmental condition characterized by, among other things, differences and difficulties in social communication and social interaction. Because autism affects individuals differently, we use the term “autism spectrum” to describe the diverse abilities and needs of each autistic individual. In the United States, the prevalence rate of autism among children was reported to be 1.85 percent (1 in 54 children). In Australia, the prevalence rate across all age groups was 0.8 percent. More recently, researchers from the University of Cambridge reported a prevalence rate of 1.76 percent among children in England. According to a general household survey conducted by the Hong Kong Census and Statistics Department in 2013, there were 10,200 people with autism (a prevalence rate of 0.1 percent) in Hong Kong. This figure has not been updated since, and estimates given by local service organizations are much higher, suggesting there are between 118,000 to 130,000 people with autism. One thing is clear, though: The rise in the number of people diagnosed with autism is a worldwide phenomenon. Society’s awareness of autism may have increased, but our conventional understanding of autism, which is based on the medical model, has unnecessarily hindered our empathetic understanding of the challenges and needs of the autistic population. For example, there are people who believe that autism is a mental illness, and that people with autism are not socially motivated. These misconceptions are both harmful and stigmatizing to people with autism. When we talk about raising awareness, it is not only important to get our facts right, but that we do so in a sensitive and respectful manner.

Society’s awareness of autism may have increased, but our conventional understanding of autism, which is based on the medical model, has unnecessarily hindered our empathetic understanding of the challenges and needs of the autistic population

Many of the events on International Autism Day (April 2) have turned virtual due to the pandemic, making them accessible to participants around the globe, across different time zones. It is a busy and exciting time for researchers in the field of autism and practice, and even more so for autistic individuals engaged in autism research and advocacy. When it comes to the latest developments and publications in autism, a lot is happening in Anglo-Western countries, in the US, the United Kingdom and Australia. The stark contrast between local autism awareness events and those happening in Anglo-Western countries is the positive recognition given to the representation of autistic people in the latter; as the saying goes, “Nothing about us without us.” The voices of people with autism have, for a long time, been excluded from research and policies concerning them, but this is slowly changing in countries with a strong presence of disability rights movements. Many autism advocates are no longer just talking about raising autism awareness but are actively pushing for autism acceptance. This follows a shift in the way we think about autism, from one of neurological deficit to one of neurological diversity.

Traditionally, autism has been defined and understood from the outside, by medical professionals, as an abnormal condition. The term “neurodiversity” was proposed in the late ’90s by Judy Singer, a sociologist who is also autistic, who argues that every human has a unique brain and combination of abilities and needs, and that we should be respectful of that diversity. Singer’s thesis paved the way for the neurodiversity movement that we are currently witnessing in Anglo-Western countries. The neurodiversity movement seeks to reframe autism by replacing negative stereotypes with a more-balanced valuation of strengths and weaknesses, and the impact of the social movement has been profound. Notably, researchers and funding organizations are now more attuned to what the autistic communities are saying and the importance of grounding research in the lived experiences of autistic people. This means research that address practical concerns of the autistic communities and that will translate to meaningful outcomes for autistic people. In the past, research on autism has had an exclusive focus on basic science and children with autism. The scope of autism research has broadened significantly in recent years, branching out into other disciplinary fields and areas to include interventions, services, education, employment, mental health, suicide, criminal justice and previously underresearched groups such as females and adults on the autism spectrum. We are seeing experimental research that challenges the assumptions of the medical model and a shift toward a more social model of autism, looking at the impact of the social environment on outcomes for autistic people.

The lineup of international events is testament to a vibrant autism research and advocacy scene. The webinars cover a broad range of topics, including interventions, sensory challenges, anxiety and mental health issues, stigma, diversity and inclusion in autism research and the workplace, and the experiences of autistic people and their families during the pandemic lockdown. They also feature a diverse group of speakers, which include not only professional experts in autism and parents of children with autism, but also people who are actually autistic from different sectors and walks of life — content creator, IT analyst, farm attendant, medical translator, academic, educator, teacher, social care practitioner, etc. Their diverse backgrounds challenge society’s rigid stereotypes that people with autism can perform only certain jobs. There is a real sense of empowerment as autistic people take the stage to share their lived experiences or showcase the research they are doing. They share one purpose in common: to break down the stigma and stereotypes relating to autism and to educate the public about autism in a manner that respects diversity and inclusion. This means understanding autistic people as individuals with feelings and not treating them like lab rats or defining them by textbook definition. This means respecting autonomy and supporting autistic people to live a fulfilling life the way they want and not assuming what a fulfilling life is for them. This means recognizing that effective communication is a shared responsibility between the autistic and the non-autistic. Inclusion is not about making autistic people appear “normal”; inclusion is accepting their differences.

The advocacy for autism acceptance continues and it is not going to be easy. Nevertheless, we all live in the community, and everyone (whether autistic or not) is part of the community. From a time when autistic people are rarely consulted as equal stakeholders to the present when autistic people are collaboratively shaping research priorities, it is with envy that we look at the progress being made by my autistic counterparts in Western societies, but it could also mean opportunities for Hong Kong. Societies are well-known for being resistant to change, and in Hong Kong, the challenges are further compounded by the lack of a strong disability culture. Nonetheless, we hope this is a start to opening up further conversations on autism and diversity in our local communities and internationally. It will be a litmus test of civility for Hong Kong, as a global and international city, to make their autistic residents feel accepted as valued members of this society, create opportunities to bring the best out in the autistic person, and provide a diverse and inclusive environment fit for the autistic and the non-autistic.

Yulin Cheng is a PhD student and Paul Yip is her supervisor and a chair professor of population health at the Social Work and Social Administration, the University of Hong Kong. 

The views do not necessarily reflect those of China Daily.