When communicating with the media, we have to be careful to avoid accidentally creating negative narratives about autistic people. Unintentional omissions or mistakes can have repercussions such as professional reputational damage, so we as the interviewee need to play our part to prevent undesirable portrayals including by people or organisations who want to exploit autistics.
For example in the TodayOnline article about myself, the journalist did not ask enough questions about my background to be able to obtain an accurate and comprehensive background. If a journalist asks too few questions, we as the interviewee must make an effort to check on the narrative being constructed and help fill in any gaps of knowledge or understanding.
Remember to ask for a name card or take down the journalist’s contact information. If we realised after the interview that we have missed out on mentioning certain facts and issues to the journalist, we can still send this additional information by email. Do remember to follow up with an SMS/WhatsApp/Telegram message to bring this email to the attention of the journalist. By supporting journalists in doing their job well, we also help ourselves to be properly represented.
It is also very important to remind the journalist about why certain issues are very sensitive to us. For instance, I won’t care much about me being described as “a person with autism” or as “an autistic person”. However, when it comes to my employment history, I am very concerned as any doubts about my competency and personal integrity will affect my future employability. For example, in the article:
Inaccuracy: I hid my diagnosis. [This implies deception and thus can be considered defamatory.]
Actually: The job application form did not require me to declare that I am autistic. I simply chose not to mention it.
Incomplete: I left due to stress from that third job (which was the highest paying job I ever had).
Actually: I was one of the people in charge of a service centre that handled thousands of clients daily. I was required to manage a small team, handle demanding clients and work overtime daily to clear the heavy workload. This is something that autistic people are usually not expected to be able to cope with.
It is also important that we provide additional context to the journalist when the relevant questions were not asked. For example:
- The other 3 jobs were offered to me because people were aware of my competency with IT; I did not obtain them by job hunting.
- Except for a short stint in a small business where both the manager and the only other employee played office politics against me, I was popular and well-liked at work. When I offered my resignation, co-workers tried to persuade me to change my mind.
- Although I was unable to do well as a manager in the third job, I took the initiative to suggest and helped implement strategic suggestions to improve workplace operations. I went beyond my role to compile work processes into a document spanning 80+ pages as Standard Operating Procedures for everyone to follow.
- I was in my fourth job for more than 8 years which involved IT support as well as psychometric assessment and development work. I left to start my freelancing business so I have more time for what matters most in my life.
If the journalist is unfamiliar with autism/disability support, we the interviewee should take the initiative to suggest different perspectives that are empowering for the autistic community. As an example:
- Inclusive Equality: My participation in the “nothing about us without us” movement where autistics are recognised as important and equal partners to sculpt the policies that affect them.
- Leadership: How I demonstrated that autistics can create change by leading community projects even without funding and university-level qualifications.
- Competency: How I demonstrated that autistics can be highly employable. Other than full-time employment, I also found enough success to cover my living expenses in my freelance business despite having not advertised it.
- Personal Growth: How I demonstrated that autistics can become self-reliant and competent through personal choice and effort.
- Awareness: How I had purposely dressed up differently for the media to dispel the myth that male autistics are nerdy recluses disconnected from mainstream society.
- Advocacy: A case study of how I started autistic-led autism advocacy in Singapore and Greater China to how I am actively participating in policy-making and launching community-led initiatives; this can inspire the younger generation of autistic advocates.
- Hidden Autistics: Raising awareness that autistics who have adapted well to mainstream society almost always choose not to identify as autistic, creating a skewed impression that all autistics are reliant on external support to function in mainstream society.
I strongly recommend that autistic advocates request to review the draft of the news coverage before publication. Although this is not standard industry practice, it can be considered an accommodation due to us having a high risk of being misunderstood.
Another helpful measure is to read up on how the journalist has portrayed disability/autism in the past and their personal participation in supporting disenfranchaised people. It is also important to determine the context and narrative of the interview (e.g. ask about what the news feature is for and what it aims to do), and choose not to be interviewed if the narrative does not fit into our personal beliefs.
It is also a good precaution to have recorded down the spoken interview for our reference to protect ourselves from any misunderstandings.
In addition, be wary if you need to sign a media release form as it may contains terms that cause you to lose control of how you are portrayed, of the profits that can be made from your story or of how your work is used. Always seek advice from someone with professional legal knowledge to ensure that you are not taken advantage for.
If we have received negative or inaccurate publicity despite our efforts, then it is important that we give measured and objective feedback in writing to both the news organisation as well as to the people who facilitated the interview. This way, they can learn how to be more careful when working with other autistic advocates in the future.
However, an unwise decision is to raise the issue to social media and create much negative publicity about it. This can make it hard to reconcile when people feel that they are being blamed and need to defend themselves. Do remember that we ourselves may have a role to play in causing the situation. Thus, it is important to stay positive so that the possibility of a win-win resolution can exist.
Yes, it can be highly triggering when we feel that our trust has been betrayed. I have a reputation as a calm and rational person who dislikes confrontation, but for the first time in my life, this incident has upset me so much that I was unable to think positively and act rationally. I was among the very few autistics who did not have employability issues, and it triggered me that the first publicity I received in the local newspaper after 13 years painted me as having great difficulty finding jobs. Even more so that the autism organisation which facilitated the interview refused to speak out about this misleading portrayal. That was a dark day for autism advocacy in Singapore.
What was done was done – it is not worthwhile to harp on a situation that can no longer be changed. My advice for other autistic advocates who may encounter such situations is to talk to trusted mentors (both autistic and non-autistic) to vent their frustration, do what can be done in a tactful and rational manner, then forgive the mistake and move on to work only with sincere partners who truly support autistic people. Writing an article or a social media post about the incident after we are emotionally calm can also allow us to clarify the issue and correct misconceptions.
Creating change for the autism community is a long marathon, not a short sprint. It is common to encounter setbacks including from people who have insufficient experience working with the autistic community and limiting beliefs about inclusion. Such learning experiences should neither stop us from continuing to serve the community nor damage our relationships with key partners. In any case, these setbacks are also opportunities to create more positive awareness and understanding of the situation faced by autistic people.