Nothing About Us Without Us: The Neurominority Dilemma

Painting by Marcelle Ciampi

A distressed young child held down to a chair
They say he’s “just being a brat”
They clearly don’t care
The teen they think is too shy to speak
Is aware they are different
And may be more powerful than meek
The adult struggling to find lasting work
Is discriminated against
Over their many ‘weird’ quirks
We may not always look others in the eye
When I see it being forced I grumble and sigh
Others laugh when we flinch from noise or touch
Not understanding
Overstimulation can be too much
They say our behaviours are something to fix
Their ignorance is strong
It’s just how we tick
They only see through the narrow lens of their ways
A burden, tragedy, non-human
Happening constantly, day after day
‘But you seem so ‘high functioning’, not much different from others’
I’ve heard that a million times
As have my autistic sisters and brothers
They tell us how to think, feel, and what to do
It’s highly disturbing
We have our own points of view
We have a lot to share
Be it from our hands or mouths
We are autistic
And we can speak for ourselves!

~ Submitted by an autistic educator, author, and advocate from Canada. Prose that expresses the inner frustration autistic individuals face with wanting to be heard.

Good intention, well-meaning initiatives, and arduous effort does not justify discrimination. There is a saying in the autism community: Nothing about us without us—in other words, nothing about autism without the voice of autistic individuals. It’s important we are heard. Our voices matter. And it’s time that we were seen as individuals of a growing culture of neurodivergents. We deserve a voice at the table and we deserve to be treated as equals.

We are a marginalized minority. We are minority members. Like any other minority, we ought to be included in conversations about us. Despite this, inequities prevail. Take for example what happens to autistic individuals in the workplace and beyond:

More resources here:

What if the Tables were Turned?

Dark Side of Autism in the Workplace

Workplace Discrimination for Autistic People

A woman, who identifies with having Aspergers, wrote me to say:

“I was on the board of directors of a local autism non-profit, until January when I handed in my letter of resignation. I was one of only two autistics on the board . . . The other speakers, including the keynote, were neurotypical ‘professionals.’ In advertising the conference on their Facebook page, they listed all of the other speakers by name except for the two autistic presenters. We were not even mentioned. When I brought this up, I was told this was because the ‘professionals’ were ‘well known in the autism community.’ This, and other similar incidents, led to my resignation. Nothing about us without us. They somehow feel that their presence and their input on autism is more valuable than an autistic person’s? I think not.”

I receive 100s of these types of messages.

Inequities of autistic people result in perpetuated stereotypes, misrepresentation of the collective, and profiteering off a marginalized minority (tokenism). As an autistic collective, we are repeatedly not given opportunity to be key leaders at events or corporate gatherings. In example, the autism-hiring initiative lead roles (paid positions) are held by non-autistic individuals. The autistic representation comes from one, sometimes maybe two voices (if both can attend), who are in subordinate and/or unpaid roles. We can’t gain entry to be leaders in the discussion, unless we are already the lead of an autism-hiring initiative. It’s one door closed after another. In other words, leaders of autism hiring initiatives are gathering to talk about their initiatives of inclusion, while having created unsurmountable barriers to true inclusion.

We are told as autistic individuals that we can apply to be a guest speaker at the Autism Round Table, if we represent an agency. We must email one Round Table member to inquire. We are then (maybe) invited to the discussion. But only as an inferior autistic voice to a board of superior non-autistic decision makers. These Round Tables are more akin to the proverbial round holes that don’t grant entrance to the square peg.

Substitute any other minority and these exclusionary measures would be grounds for litigation.

Then there are the autism conferences, the majority with a medical-deficit model, where dozens of doctors and lab workers take the main stage to talk about studies they are doing on us and their theories about us. And consider the fact that when autistic professionals contact the selection committee members, of these deficit-model conferences, requesting involvement, and to convey dismay of the inequities and unequal representation, we are oftentimes hushed or minimized or shamed, if not ignored.

Too often, agency representatives and executives and the like, who don’t have firsthand experience with living life on the spectrum, parade the stage (or conference room) and talk about autism, without granting us autistic people equal airtime. We are subjected to the research studies outcomes about us without offering our input or insights about us. A collective of non-autistics making conclusions about us and perpetuating unequal representation of our community members: skewed truths, partial truths, mistruths, and damaging stereotypes. For instance, charts and graphs depicting the statistical likelihood for us to have relationships, display love, etc.

Again, substitute another minority.

We aren’t lab rats. We have lived-lives to tell. But others keep writing our story for us. Without us.

I attended a Fortune 500 company inclusion conference in Bellevue, Washington, where a deaf person talked about being deaf, a dyslexic talked about having dyslexia, a person who was legally blind talked about being blind, and a person from a large autism agency, who wasn’t autistic, went on stage to talk about autism.

What is beneficial about having autistic professionals at these events? Beyond eliminating bias and segregation? We are able to bring in cultural insights and personal experiences, balanced with lived-life and proven solutions. It removes us from being mere numbers (diversity) into the light of inclusion (people). It puts a face to the word of autism. Removes us from the lens of ‘disorder.’ Our representation helps to break down miscommunication and misnomers. As professional autistics, by the mere act of standing on stage, we are demonstrating our capacity and capability. We are countering the deficit-lens.

Allow us opportunity to counter your bias.

Autistic individuals who are submersed in the autistic culture, not only know what it’s like to live on the spectrum, and the challenges this brings, but where to go and who to know. We can answer when someone asks where is that resource? At a recent Neurodiversity Summit the well-intentioned key leader, of a distinguished University and head of the entire Summit, seemed shocked that I knew over 3,000 adults on the spectrum over 40. We exist! And we have valuable resources to share!

We should have a voice at the table and be acknowledged and heard. We ought demand it, as so! There is no logical reason for us to be a second-thought, for us to be ostracized from a world that is about us. Unless we are being viewed as inferior.

“To deny people their human rights is to challenge their very humanity.” – Nelson Mandela

Authors note: I have advocated for years. I have had calls with key leaders of these initiatives, sent emails, forwarded my articles, tagged them in social media to read concerns. Asked uncomfortable questions. Met with the agency representatives. Showed up at webinars to ask for information. Written dozens of articles of inequity. I have tried to go behind the scenes. This article isn’t written without years of effort: on my part. (I updated the Autism Round Table piece; after talking to a source; they are a diverse group, just not representative of autistic people.)

10.22.20 Virtual Panel

Bio:  Marcelle Ciampi, M.Ed. (aka Samantha Craft)

Marcelle Ciampi (aka Samatha Craft) a respected autistic author and community advocate, is best known for her writings found in the well-received book Everyday Aspergers. A professional educator, she has been featured in various literature, including peer-reviewed journals, Autism Parenting Magazine, The Mighty, Project Aspie, Art of Autism, and Different Brains. Marcelle works as the Recruitment Manager and Outreach Specialist at Ultranauts Inc., an engineering firm with a neurodiversity-hiring initiative, and is a consultant for Uptimize and Spectrum Fusion. A contributing author of Spectrum Women: Walking to the Beat of Autism, Marcelle speaks globally on the topic of neurodiversity. She also serves as the founder of Spectrum Suite LLC, the co-founder of the Spectrum Lights Inclusion Summit, co-executive of LifeGuides for Autistics (, and a contributor and advisor to autism organizations and conferences internationally. Some of her works, especially The Ten Traits, have been translated into multiple languages and been shared in counseling offices around the world. She resides in the Pacific Northwest U.S.A. with her sons and life partner.

“Everyday Aspergers is an unusual and powerful exploration of one woman’s marvelously lived life. Reminiscent of the best of Anne Lamott, Everyday Aspergers jumps back and forth in time through a series of interlocking vignettes that give insight and context to her lived experience as an autistic woman. The humor and light touch is disarming, because underneath light observations and quirky moments are buried deep truths about the human experience and about her own work as an autistic woman discerning how to live her best life. From learning how to make eye contact to finding ways to communicate her needs to being a dyslexic cheerleader and a fraught mother of also-autistic son, Samantha Craft gives us a marvelous spectrum of experiences. Highly recommended for everyone to read — especially those who love people who are just a little different.”

~ Ned Hayes, bestselling author of The Eagle TreeAdvertisements


2 thoughts on “Nothing About Us Without Us: The Neurominority Dilemma

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s