I pledge to reduce stigma in autism

Earlier this year, I read a report published by UK autism research charity, Autistica, which reported some alarming findings on autism and premature mortality. According to the report, “autistic people die on average 16 years earlier than the general population” and “autistic adults without a learning disability are 9 times more likely to die from suicide”. The report describes this as a hidden public crisis and rightly so. In a survey of community attitudes and behaviours towards autism in Australia, 98% of respondents reported they have heard of autism but only 29% agreed to some extent that they have a good understanding of how to support people with autism, whereas only 4% of autistic people agreed that most people in the community know how to support them. The increase in ‘awareness’ of autism has not led to an increase in support and acceptance for individuals on the spectrum, a sentiment echoed by many in the autistic community. (Note: This post uses the identity-first language and person-first language interchangeably to reflect the diversity of opinion in the autistic community).

As an autistic, I am concerned because I have a personal stake in the issue. As an employee of a suicide research centre, I am eager to find out what we can do and what we are doing to support these people. The answer is a disappointingly no, there is nothing we are doing about it. Unfortunately, the state of autism research in Hong Kong is lagging far behind many countries, autistic adults are being forgotten and ignored.

Like many autistics engrossed in their area of interests, I started collecting every research article I could find on the topic, starting with the ones cited in the Autistica report. I wanted to know what the studies have found, why people with autism are more likely to die from suicide, who are the autistic people who die by suicide, why do they kill themselves and how does my own experiences fit in. I read each report as I find them, in the end, I collected a list of 32 academic articles and a few other editorial comments. The first thing I found is that studies have repeatedly confirmed that people with autism are at an elevated risk of suicidality. The next thing I ‘discovered’ are the reasons that contributed to the elevated risk. I said ‘discovered’ because they aren’t explicit from the articles but they are something which many autistics are familiar with and faced throughout most of their lives ~ stigma, ignorance, misconceptions and misunderstandings. It is not just stigma for being autistic but stigma for being different as many autistic people were not diagnosed until adult life.

First, the widely adopted definition of autism presents a one-sided myopic view of what autism is.

Word cloud of the definition of autism as described in the studies on autism and suicidality (click to enlarge)

 

Unsurprisingly, the majority of articles focus on deficits and impairments in social communication and social interaction. However, communication and interaction are, by definition, reciprocal and two-sided, so is perspective taking. For anyone who claim “individuals with Asperger syndrome display lack of empathy”, remember where your finger is pointing because it is also true that many neurotypicals struggle to understand the autistic person and mind.

Second, beauty lies in the eye of the beholder. Unfortunately, society only sees our “deficits and impairments”, “core deficits”, “marked deficits”, “persistent impairment”, “key impairment”; if once is not enough, autistic people are repeatedly reminded twice or several times in the same article. On the other hand, our strengths and positive qualities are brushed aside even when these are the very attributes that help keep us sane. It has been suggested that autistic people may be more difficult to evaluate for suicide risk “because they cannot comprehend questions or instructions unless they are clear and concise.” It begs the question why aren’t people communicating clearly and concisely in the first place, and when the instructions are not clear and concise, how do we really know that one truly comprehends the instructions even when they claim they do (think: do people really know how to put on their oxygen masks on the plane)? There is a lot of this double standards applying to people with autism. Our failure to comprehend is due to our impairments in communication, as opposed to the inability of others to give clear and concise instructions. When we fail to communicate our needs effectively, it is because of our impairment, as opposed to the inability of others to comprehend our needs. Stop putting the blame on autistic people, stop victimizing us, we don’t need your double standards.

Third, many autistics find the use of functioning labels like “high functioning” or “mild autism” unhelpful because they belittle the everyday challenges of individuals on the spectrum (see for e.g., here1, here2, here3 and here4). The absurdity of the functioning label becomes even more pronounced in this area. On the one hand, it is generally believed that impairments in social communication were associated with an increased risk of suicidality in autism. On the other hand, some studies have also found that autistic people with greater social and communication skills (high-functioning autistics) are more at risk of suicide than those with severe social and communication deficits (low-functioning autistics). Leaving aside the self-contradictory statement, tell me what good is it to be called high-functioning if I’m struggling to function to such extent I want to die?

Fourth, lack of inclusive participation in suicide research leading to an oversimplification of causes. Media professionals reporting on suicide have often been cautioned to use language responsibly and carefully, and to avoid simplistic explanations. However, in trying to come up with plausible explanations for the higher suicidality rate in autistic people, many studies fall into the trap of oversimplifying the causes and attribute whatever behaviour to our underlying impairments in cognition, communication and social interaction. This is not to say that the researchers have not taken pains to explain how and why a particular feature or behaviour of an autistic person is likely to increase their risk of suicide, but such explanations, due to reasons mentioned above, tend to be based on a one-sided myopic view of autism. The lack of studies exploring the lived experiences of autistic people and the lack of inclusive participation of autistic people in the research have undoubtedly limited their potential research impact and our knowledge in this area. Academics, professionals and researchers should take heed of this and hold themselves to the same standards as they hold others.

Fifth, lack of diversity in research leading to the gap in public health approach. From a public health perspective, there is a belief that it is more effective to lower the risk in the general population than to only target high risk individuals. The danger is the marginalization of vulnerable at-risk population such as autistic people, who form a significant minority. The lack of diversity in research and the exclusion of people with autism cannot be justified because they are the ones more likely to experience barriers in accessing social support. We need to rethink the public health approach, in particular, universal one-size-fits-all suicide prevention strategies for the general population may not address the needs of autistic people and targeted strategies for autistic people (if any) may not cover those who are undiagnosed, which is not uncommon. We need a universal design strategy that is inclusive and adapt to the needs of a diverse population.

Sixth, this post has sought to highlight the deficits of the medical model and its propensity to stigmatize autism. In this respect, the medical model of deficits fails to reflect international standards. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which came into force in 2008 and has been ratified by 177 countries (US has not ratified), has consiously adopted a social model of disability to reflect changing attitudes towards disabled people and to emphasize on the social barriers that prevent the inclusive participation of people with disabilities in society. Unfortunately, the majority of discussion on autism has not reflected this change and continues to perpetuate the stigmatization of people with autism. What has been described above is an everyday reality for people with autism who are constantly judged by people around them and the struggles of fitting into a society that is less embracing of differences. As professionals, academics and researchers, as part of society, we are not only failing autistic adults and children, we are denying their rights to participate fully in society.

In response to a question that was posed to me a while ago, I said I might use the term “autism spectrum disorder (ASD)” if I were writing for an academic paper to reflect that it is the term used in the diagnostic criteria. Since then, my view has changed, and today, I’m going to officially retract my statement. I owe my allegiance to autistic people and human diversity, it is my duty to help reduce stigma on autism and mental health.

I am aware that autistic individuals are a heterogeneous group which adds to the challenge of inclusive participation and ensuring that the voice of each and everyone is represented. However, this is not a reason for excluding their participation. On a positive note, it has been done, in particular, the latest study by Cassidy et al. (2018) on the common and unique risk markers for suicidality in autism incorporated an inclusive research design. Of note, the study concluded that masking and unmet support needs appear to be risk factors unique to the autistic population.

Having worked as a researcher and in the mental health related discipline, I have seen how professionals who are supposed to help, often inadvertently perpetuate the stigma of autism and mental health, to the detriment of those marginalized. September 10 is World Suicide Prevention Day. The theme for this year is “Working Together to Prevent Suicide.” I will send an edited version of this post as an open letter to the International Association for Suicide Prevention, in response to the campaign and to bring this important issue to their attention. My intention is to bring this to the awareness of professionals, academics and researchers, in the hope we could work together to help improve the lives of autistic people, by reducing the stigma in autism and increasing acceptance. The first thing we could do is to make sure we talk about autism and people with autism in a sensitive and respectful manner.

I pledge to reduce stigma in autism.

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15 thoughts on “I pledge to reduce stigma in autism

      1. I wouldn’t have thought of doing this if I weren’t around people like you who keeps me motivated and inspired, which is why your presence matters! ❤
        This is also what has been keeping me busy lol. It is the gist of my presentation last month and I think I did a better work putting it in words than saying it orally. 😂

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  1. I pledge, too! You make so many important points. I’d like to comment on one line: “Of note, the study concluded that masking and unmet support needs appear to be risk factors unique to the autistic population.” Unmet support needs I understand, but I wonder if masking is also a factor sometimes with depression and severe anxiety?

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    1. I should have written “depression and severe anxiety in non-autistic people.” I was thinking of masking in a broader sense, but your statement was referring specifically to autistic masking. I do see how that would be a unique risk factor.

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      1. Thank you for supporting! That’s a good question and thanks for the subsequent clarification. I did wonder what is it you were asking and needed some time to think about it, so I thought it would be better to defer my reply until the next day. You are absolutely right to point out that masking also applies to non-autistic people, then of course, autistic masking is a bit different. I took a look at the study again and interestingly, even though they included a general population comparison group, the questions they asked about masking were specific to autistic masking (“Have you ever tried to camouflage or mask your characteristics of ASC to cope with social situations?”), the comparison group were not asked these questions. It would be interesting if they have included a similar question about masking to ask the comparison group. I’m glad you asked, it’s great to exchange different perspectives to stimulate discussion. 🙂

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