You were invited to present at your local community college event. This feels like a high moment for you. Being autistic has set you apart from your peers, and may have made your climb to standardized norms more challenging. You may have personally experienced the rush of joy when your interests and aptitudes gave you an edge over your peers.
Today, you find yourself to be a professional scholar, practitioner, parent, or researcher, and also autistic. That invitation feels nice. So what could possibly go wrong? One red flag would be the reassurance that the ABA promoters in the conference lineup are there because people really want to “hear all sides” in addition to yours. You may feel confused and uncomfortable when they remind you that you may only use person-first language, and to avoid the word “autistic”. You begin to wonder if you would’ve been invited to give this talk if you were not autistic.
“Sometimes when people say ‘tell us your story’, what they really mean is “tell us what we want to hear.” ~ Jim Sinclair
If the talk is specifically about the autistic experience, any speakers who aren’t autistic themselves would be a questionable choice for the organizers. If the agenda of the event is to hear from “a person living with autism” and you are invited specifically because you are both autistic and a professional, then your sharing of your lived experience should be completely uncensored.
If the conference is about people showcasing their professional accomplishments and making recommendations to the field of autism, then this is how you’d recognize when your autisticness might be the only reason you were invited to this speaking engagement:
- You are not treated as your professional colleagues are—you are addressed as an autistic individual rather than a professional, or without referencing your academic credentials.
- The agenda of the event is to hear from “a person living with autism” and not about you as a professional. When you wish to present on your professional accomplishments, you are told that maybe next time, they can try to see if the conference has room for your research, which they profess to have not read at all.
- The organizers claim to have a “minimal” or “no budget” for bringing you in, yet the event features motivational speakers who travel and lecture for a living, and often require a booking years in advance.
- The conference headliner is an autistic celebrity who never published scientifically valid research about autism (or maybe they only published about cows in their career).
- You are told that you have been “curated” by someone on the board or the planning committee.
- You are offered free entry to the entire event “in gratitude” of your contribution.
- You are not asked when you wish to present, but are placed in a spot or locale that might not accommodate your sensory and functional needs.
- The advertising material promotes your autism as your attribute, instead of your submitted professional bio.
- You are listed as a footnote, while the person who “found” you is in the title of the event. Meaning, they are taking the credit for the content you will speak about.
- The event is about autism and employment, but autistic presenters are not paid.
Why These Autism Employment Issues are Problematic
They are asking you to present because you have “personal, lived experience” and not because they want to hear how your experience has informed your practice as a professional. They don’t want to hear about your comorbidities, all the ways you are masking and exposing yourself to sensory violations to deliver your presentation. The work you identify with is irrelevant, because you are primarily brought in as the diversity token on their agenda.
They want to hear about the shiny ways you overcame obvious stereotypes. The therapists in the audience are hungry to congratulate themselves for the work they are doing with people like you, and the parents are hoping that their children will acquire a semblance of presentability, the way you have. Overall, they are hoping you will make them feel more inspired just because they made the effort to listen to one autistic person.
“I don’t tell my story to teach. That would be free emotional labor.
If anyone learns from my words, that’s because they choose to listen.” ~ Amy Sequenzia, Author
They’re not looking for #ActuallyAutistic professionals. They are not #AskingAutistics to share their work. They just want to fill their quota and earn their benevolence brownie points. As for you, know that the IRS declaration for speaker honorarium should also include travel, lodging, and meal reimbursement, reported as “non employee compensation”. Do you have examples of how you may have been taken advantage of? Please share your experience with tokenism and exploitation on the basis of your diagnosis.
- Telling your story without being a self-narrating zoo exhibit Ruti Reagan
- “Often, what they really want is for you to be a self-narrating zoo exhibit, and satisfy their curiosity without inserting your opinions or having boundaries.” Jim Sinclair
- “Those non-autistic speakers often receive speaker’s fees while autistic speakers do not.” Nick Walker
- “Pay good autistic people.Fairly. Because you don’t want a future where your child is worth nothing.” Ann Memmot
About the author
Henny Kupferstein is a doctoral candidate in psychology with a specialization in autism research. As an autistic scholar, her activism resulting in the Autism Action NY legislative package to be introduced to the New York State Assembly. Henny is passionate about equal access to arts and education for all types of learners, as well as access to music making by people with neurological motor disorders. A frequent presenter, Henny is also a consultant to parents and educators on the subjects of music, perfect pitch, autism, alternative health, AACs, and sensory integration. She can be contacted via http://www.hennyk.com
I would like to credit the professional collaboration for my autistic colleagues for helping me compose this list. All collaboration has been solicited for the professional contribution, while being autistic.
Tania Melnyczuk is the Director of Programme Design at ProjectManagement.co.za and former virtual faculty at the University of Stellenbosch Business School (USB-Ed). She is also the founder of the Autistic Strategies Network, arranging the world’s first autism seminar for health professionals presented entirely by autistic people. She is currently working on a paper on the channelopathic pathogenesis and treatment of sensory overstimulation for the SA Medical Journal, based on the work of Benjine Gerber. Aside from her professional contribution, she identifies as a cisgender autistic woman.