Throughout the years, individuals with autism have been defined through terms such as 'deficit.' Today, researchers are aiming to demonstrate why the concept of autism needs to be reframed.
Autism spectrum disorder (ASD) is a neurodevelopmental disorder that affects communication and behavior. It is characterized by challenges with communication, social interaction, and repetitive behaviors. These challenges involve impairments in social reciprocity and in the use of verbal and nonverbal communication. Repetitive behaviors are often manifested by repetitive speech, motor movement, and hyper/hypo-sensitivity to sensory input – to name a few.
Throughout the years, individuals with autism have been defined through terms such as ‘deficit’ and ‘failure’. Deficits in communication and social interaction...deficits in motor movement…failure in adherence to routines…and more. Now, researchers are aiming to demonstrate why the concept of autism needs to be reframed, making it less about the individual and more about the way that society relates to and views individuals with autism.
Deficits or abilities?
In the United Kingdom, a 100% increase in seen is school suspensions/expulsions on account of ‘behavioral problems’ displayed by children with autism. In August of 2018, a historical legal ruling was made by the United Kingdom’s Upper Tribunal to bring to a halt this rising number. The legal ruling indicates that schools are now legally obligated to make rational modifications under the United Kingdom’s Equality Act of 2010 to support children with autism whose behavior proves challenging.
While the Tribunal’s end-result is welcomed, some aspects of the ruling have brought to the surface the fundamental misrepresentation of autism that gives rise to these school suspensions/expulsions in the first place. For instance, displaying aggressive behavior is not a choice for children with autism, but rather an expected characteristic of being autistic. With this in mind, researchers from Sheffield Hallam University aimed to demonstrate the impact of these devastating repercussions on disabled children and their families. They found that the personal issues relating to autism have provoked a multi-million-dollar industry that evokes the idea that children with autism are in desperate need of a ‘cure’.
Re-thinking autism and removing barriers
The Individual Model of Disability represents the view that an individual has a disability because in some critical way, their body has failed them. This notion of autism is what is failing children and young adolescents with the disorder. If you ask an individual with autism what their problem is, they will not answer that there is something wrong with them. On the contrary, they will tell you that others simply do not understand them and so they reject and exclude them.
School suspensions/expulsions is merely one issue out of many that has led to a time to think differently about autism. This is why Nick Hodge, Professor of Inclusive Practice at Sheffield Hallam University, stresses that importance of adopting the approach known as the Social Model of Disability.
The Social Model of Disability states that disability is caused by the way society is organized, as opposed to someone’s impairment or difference. The model aims to remove barriers that restrict life choices for disabled individuals and by doing so, these individuals can be independent and equal in society, with choice and control over their own lives. “This led me to understand that disability is located not in the individual but in the social, cultural, physical and economic environments. My work then became about changing the practices that pupils experience rather than the children and young people themselves” said Professor Hodge.
Through his research, Professor Hodge offers experts a different definition on autism, one that focuses on school practices, instead of the child. It states – “Profound and fundamental challenges with: knowing and/or applying customary social rules and practices if these are not made clear; accessing commonly available communication systems; adapting quickly to unexpected and enforced change.” The definition still recognizes the challenges that individuals with autism face, but it steers clear of the deficit-focused definition presented by the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders.
Kathy Klienschmidt, special education teacher at the Department of Education and Child Development (South Australia), is another expert who stresses that society needs to stop considering ASD as a deficit and to start embracing difference. However, in order for this to be possible, education and tools need to be available to staff members. “Teachers have got a big role in explaining and also demonstrating and showing that we accept difference ... equal treatment doesn’t mean equality. It’s about supporting the mainstream students to actually just understand what is happening and for us to celebrate difference, you know not everybody needs to think or do things the same way” said Ms. Klienschmidt.
Acceptance goes a long way
While evaluation following a diagnosis of autism is important in terms of securing needed educational, medical, and support services, what does not make sense is taking the measures of shortcomings and solely using them to define individuals with autism. When this happens, individuals with autism are thought of only in terms of their deficits and difficulties. And despite the importance of these measures in the diagnostic realm, they are not the sum total of an autistic individual.
It is vital for schools to be more accepting of the fact that children with autism do not think like the majority. Moreover, it is necessary for them to develop more responsive methods to meeting a diverse range of students, instead of fixating on a fundamental problem with a child. That being said, the education of teachers, school leaders, and students does not have to be a difficult process. “Just raising awareness that autism is not a deficit, it can be a huge positive because the people in our communities who have autism are those very focused people who can drill down and hopefully one day find a cure for cancer” said Ms. Klienschmidt.
The ‘war’ on autism needs to be put to a stop and not seen as a tragedy just because some individuals experience difficulty with understanding how the social world operates. Autism is a culture that needs to be enabled, as opposed to something to be cured. Only by enabling it can its true value surface for the very real and important contribution that individuals with autism make to society.