In the past, parents and professionals took the limelight during autism events and projects. The tide is now turning towards including autistics as part of these initiatives just as a new generation of autistic children are entering adulthood and seeking to express themselves.
Taking advantage of the situation, some socially savvy people have started to exploit these eager, naïve autistics to work for them. They promise fame and connections as payment. Unfortunately, most autistics are neither able to appraise the value nor take advantage of these NeuroTypical offerings. In other words, what they offer are as useful as combs to bald people.
What do these people want of us for their events and projects?
- Our name: Give the impression that they are helping and including autistics
- Our participation: Create some variety and content for their event
- Our skills: Provide a service that they will have to pay for otherwise
- Our time: Replace someone else who they must pay for otherwise
How do they exploit us to work for free?
- Public speaking
- Performing at their events
- Appearing at their events
- Writing articles
- Volunteer work
The most obvious giveaway is persistence: The more they push us to do something, the more suspicious we should be about their motives. If they don’t benefit from it, why do they keep pushing us to do it? Another giveaway is disrespect: These exploiters usually look down on autistics and it will show in their behaviour if we know where to look.
I have experienced cases of exploitation and disrespect. For instance, the author of an autism book interviewed me but never informed me that she used me as her main example inside her book and publicity interviews. When I found out from a friend and wrote to her to protest, she never replied to me.
Another author promised to take up only two hours of my time for an interview. She then followed up with an email with many questions that will take hours to answer. When I told her to look up the answers herself since I have previously written about them, she claimed that she did not have the time to read all my work. When I refused to work for her for free, she wrote a nasty review of me but eventually changed her mind to writing something neutral.
A webmaster insisted that I write an article for her, then demanded that my full name appear in her article when I only wanted my first name revealed. An event organiser avoided talking to me when I asked her about organising a future event; she asked another parent to chitchat with me instead.
The most blatant case was the boss of a dyslexia clinic organising a free autism talk for me to sell my books, only to falsely claim that I have been receiving therapy support from her at the end of my talk. Unfortunately, I was too shocked to rebut her at that time.
If we do not wish to be exploited, we must be able to recognise the signs of tokenism and take measures to protect ourselves. Firstly, we should insist on receiving reasonable compensation for our efforts. We do not have to work for free just because we are autistics and the project is about autism.
Secondly, we must be very selective in choosing who we partner with. Reject the request if we feel uncomfortable about the person or their attitude. Stop working with disrespectful, controlling, and stubborn partners. Read up about tokenism to better assess the true intention of potential partners.
Thirdly, be especially cautious if we are not working with a registered charity. Businesses, social enterprises, and private individuals are often only interested in making money and promoting their platform. These parties do not have to publicly disclose their accounts and may be using us to earn money for themselves without our knowledge. For instance, a social enterprise may earn money by accepting donations from sponsors, spending only part of the funds, and then paying the rest to its owner as salary.
Lastly, do not hunger after fame and connections. Most of us will not know how to make use of them even if we get the right ones. Going to an event to ‘promote’ ourselves can be a waste of time since marketing work is not our strength. Until we find a respectful, trusted and reliable NeuroTypical partner willing to work fairly with us and manage our publicity work, it is best to just focus on the areas that we can excel at and our own career development.
In addition, be aware that most people and autism organisations in Asia do not practice Inclusive Equality; they pretend to be inclusive but are only making use of autistic advocates to bolster their inclusion credentials. If you choose to work with them, be prepared that once your usefulness is over (e.g. after their event or interview), they will ignore you.
In exchange for giving you publicity, cash or support, you may be portrayed by their publicity as a helpless, troubled or unemployable person that they are “saving”. Misleading negative publicity can be both personally degrading and harmful to your professional reputation. In other words, the small amount of help or money you get may not be worthwhile if future employers become reluctant to hire you because of how you were featured.
As non-autistic people often have hidden agendas, and it is hard to find patient non-autistics willing to explain the political situation in concrete terms, be wary even when working with well-established organisations. At least read up about how they have featured other disabled and autistic people, then decide if that is how you wish to be featured too. As a precaution, insist on reviewing the publicity materials featuring yourself before publication. To be on the safe side, it is best to decline to be featured if they refuse to allow you to review.