Autism is sometimes called an ‘invisible disability’—that is, a neurological difference  not discernible by the naked eye. But it’s not just the condition of Autism that is invisible. It’s Autistic people as well. 

Most of the time, we are discussed in the third-person, in the abstract. While it is often necessary to treat us as a discrete subject in public discourse, especially surrounding health and education, this can fall into the trap of erasing the voices of actually Autistic people. As a result, we are often powerless and lacking in agency. We are denied political representation, interpersonal respect and an individual voice, leading us to be treated as second-class citizens.

Earlier this year, the Sydney Morning Herald profiled a young woman who had recently graduated from a psychology degree and is now working at The Centre for Positive Behaviour Support. In the article, she explains that she is now ‘a Board-Certified Behaviour Analyst’ who ‘developed a passion for helping people with disabilities when volunteering with a young autistic boy’. She expresses the privilege she feels when working with this minoritised group, and the sadness she feels when she witnesses their ‘challenging behaviours’. 

A more recent article from the ABC explores the educational needs of Autistic children, which is undoubtedly a noble aim. However, Autistic voices are not included in the piece. Instead, the focus is on parents of Autistic children and on researchers in the fields of psychology and education. This article also uses person-first language (‘person with Autism’ or ‘person with Autism Spectrum Disorder’) as opposed to identity-first language (‘Autistic person’). The latter of these is widely preferred by the actually Autistic community, as we believe that the former attempts to separate us from our condition, even though our condition affects every part of our being. The fact that this article did not take the community’s opinions and preferences into consideration risks erasing our right to self-determination.

Some consequences of Autistic erasure can prove even more harmful. The psychologist cited by the Sydney Morning Herald, along with many other disability care workers, works within a framework called Positive Behaviour Support (PBS). According to Aspect, the peak body on Autism in Australia, this framework is adopted to interpret and address Autistic people’s behavioural challenges. PBS, while displaying some unique characteristics, grew out of the controversial Applied Behavioural Analysis (ABA).   

The majority of Autistic people oppose ABA for a variety of reasons. Its central goal, as defined by Ole Ivor Lovaas in the 1960s, is to make Autistic children appear as ‘non-Autistic’ as possible—in other words, to erase the Autism from the Autistic person. This derives from the notion that Autistic thought and behaviour are inherently undesirable and should be erased. ABA and its derivatives train Autistic people via operant conditioning to make eye contact, to speak more clearly, to repress their idiosyncratic behaviours, including meltdowns. You might compare it to conditioning an epileptic person to ‘stop’ having seizures. The emphasis is not on making the child feel comfortable, but rather on making them less ‘different’ in order to comfort those around them. 

Throughout his career, Lovaas claimed that Autistic children who receive ABA therapy showed ‘no diagnosable autism at the end of treatment’.

It is likely, however, that what actually happened here is that these children had learnt to ‘mask’ their Autistic traits. ‘Masking’ is a commonly used term among Autistic advocates to describe the process by which we attempt to erase ourselves. This process has been shown to have severe mental health consequences, namely post-traumatic stress disorder (PTSD) and suicidal ideation.

Autistic children who have received ABA therapy are also at risk of entering abusive relationships, due to its teachings of compliance and people pleasing. Further, and perhaps most worryingly, some therapists have administered lethal electric shocks to their patients as part of operant conditioning. This practice is alive and well today, of which Autistic advocates have raised awareness in a campaign called #StopTheShock.

Despite these points, which many Autistic advocates other than myself have made time and time again, ABA is generally accepted by the neurotypical community as best practice for working with Autistic children. The Australian universities that offer degrees in ‘Autism’ or ‘Autism Studies’ promote interventions inspired by ABA, such as PBS and the Early Start Denver Model. The latter of these interventions poses an aim both impossible and eugenicist in nature, and certainly reminiscent of Lovaas’s ideology: to ‘reduce symptoms of autism’.

This begs the question: why won’t the neurotypical community listen to us? Why do they insist on erasing us?

Of course, the neurotypical community is happy to celebrate the protagonists of  Atypical and The Good Doctor, as well as influential Autistic figures such as Temple Grandin. But does this mean that they only listen to Autistic people if we’re white, Western, and geniuses? There are plenty of us who don’t fit inside of the box that the mainstream media built, yet we’re not offered the same grace and time as our fictional, stereotypical counterparts.

As an Autistic individual and aspiring social worker, I am deeply interested in the concept of self-determination for disabled people. This concept emphasises autonomy and self-understanding as integral to identity formation and mental health. In their seminal paper on self-determination, Sharon Field, James Martin, Robert Miller, Michael Ward and Michael Wehmeyer argue for self-determination to be present in every stage of a disabled person’s life. The Australian Human Rights Commission even highlights self-determination as a fundamental human right. It is, indeed, the antithesis of erasure.

Unfortunately, it is difficult to self-determine as an Autistic person when the people around you think they know your own brain better than you do. Many of us take pride in our Autistic traits, yet proponents of ABA believe in eradicating them. Those of us who are nonspeaking (an alternative term to ‘nonverbal’ that acknowledges the potential mastery of non-spoken language) may not be comfortable being conditioned to speak. This is, after all, the case for many Autistic people and there is no shame or harm that comes from this preference.

It is comforting to see the recent influx of books by Autistic people—Late Bloomer by Clem Bastow, Diagnosis Normal by Emma A Jane and Ten Steps to Nanette by Hannah Gadsby—and the more complex fictional portrayals of Autistic people in programmes such as Everything’s Gonna Be Okay and As We See It. Hopefully, this indicates an increased understanding and acceptance of the community. The next step would be to let ordinary Autistic people of all genders, cultures, ages and speech abilities have a say in the institutions that so often attempt to silence us. Maybe then, not only will neurotypical society as it currently exists listen to us, we will take up our rightful places as the leaders of a reformed society that uplifts everyone

Image: Victoria Pickering