My Unheeded Voice in the Echo Chamber of False Inclusivity

Two years ago, I encountered an all too common example of how institutions claiming to champion neurodiversity, the Neurodiversity Paradigm, neuro-affirmation, and disability justice can paradoxically (but not so paradoxically it turns out) perpetuate exploitation and undervaluation of autistic professionals.

A major university approached me, asking for a brief “chat” on ways to make their campus more neuro-affirming. Despite my reservations about unpaid consultations for large organizations with BILLIONS of euros/dollars (though I happily do it for small ones and individuals), assurances of this being a preliminary discussion to a potentially paid collaboration led me to agree.

The "brief" conversation, however, extended well beyond the agreed time, involving detailed probing into my ideas and suggestions on what I would do to make this campus, with an endowment of over 6 Billion USD, more neuro-affirming. One of those attending the meeting, a mental health counselor for the university commented to me how impressed they were that an autistic person could “do so many impressive things” and that they were “very impressed with everything” that I had done with my career, adding that it was “really defying all expectation for what people think of autistic people”. Ableist to the core.

I corrected them in the meeting, and it did indeed seem that they were interested in learning more and being more affirming going forward. Despite my numerous follow-ups, the university ultimately ghosted me, not pursuing any formal or even informal engagement nor compensating me for my time, travel, or expertise.

The incident was deeply disappointing, yet it is an all-too-common narrative for autistic professionals working in the Neurotypical world, artists, and creators - many of you will recognize the scenario. It’s a narrative of our ideas being valued only to the extent that they can be extracted for profit or PR, without fair acknowledgment, appreciation, or compensation (though someone will always be compensated - the non-autistic professional hawking “expertise” for 10x whatever the autistic professional typically earns for the same work, despite having 0 experience). This exploitation is especially ironic coming from entities that wear the badge of neurodiversity and inclusivity.

It also didn’t surprise me that most organizations which claim that they want to be inclusive don’t actually want to. It costs them money. It involves them having to see how they are part of an oppressive system.

However, the saga didn't end there.

Recently, at a lecture I gave on building neuro-affirming university campuses for university professionals (this time, thankfully, a paid engagement), I was confronted by a painful reminder of that exploitation. The same ableist staff member from years earlier, who is now a self-appointed “expert in Neurodiversity” —proudly and without a hint of irony—informed me that the university had indeed implemented my ideas and built an entire team (none of whom are autistic) and program for neurodiversity around them. My concepts, once freely shared in the hope of fostering genuine change on campus, had been co-opted without credit or remuneration.

To add insult to injury, this individual, a person responsible for student welfare, suggested taking more of my recent ideas from the presentation I had just given, to "hire someone to do that," again omitting any mention of direct collaboration or acknowledgment. When I smirked, telling them I’d be happy to come in for a chat about implementing my ideas on campus, they laughed, saying “sure, as I said, we have a team and we are really busy”.

What’s worse - not actually wanting to implement the ideas and performatively saying that they want to - or implying that I, the autistic professional, are incapable of doing my job and implementing my own ideas and strategies?

Clearly this newly proclaimed “neurodiversity expert”, nor their institution had learned anything. Nor were they taking the voices of their autistic students seriously.

This repeated pattern of behavior not only highlights a disconcerting lack of moral integrity but also betrays a shallow commitment to the principles of neuro-affirmation and disability justice in general.

It's particularly egregious when considering the individual's role as a caretaker of student well-being, expected to model ethical behavior and respect for autistic people. The irony of institutions and individuals who claim to support neurodivergent communities while engaging in such exploitative practices is a stark reminder of the challenges autistic professionals face. We are often seen as reservoirs of innovative ideas, yet not as deserving of respect, acknowledgment, or leadership roles in the implementation of those ideas.

My personal experience underscores a broader systemic issue within universities, government offices, companies, and NGOs that profess a commitment to neurodiversity. True neuro-affirmation requires more than lip service; it demands actionable respect for, and investment in, the contributions of autistic professionals and autistic people in general.

My experience, while disheartening, reinforces the urgency of advocating for systemic change—a change that not only recognizes but also fairly compensates the invaluable insights and expertise of autistic humans.