Ensuring Autistic Voices Are Heard: A Call for Community Consultation on Asperger’s Syndrome

The decision to move away from using the term “Asperger’s Syndrome” has raised concerns regarding the lack of meaningful consultation with the very community it represents. Furthermore, there are suggestions that this shift has been imposed upon the community by external forces, potentially fueled by underlying tensions within the broader Neurodiversity community. In the spirit of inclusivity and empowerment, it is essential to prioritize the voices and perspectives of autistic individuals when making decisions that directly impact their identities and well-being.


Autistic-Led Decision-Making

The decision to change the name “Asperger’s Syndrome” without extensive input from the autistic community raises questions about whose voices are being prioritized. Autistic individuals are the true experts on their own experiences, and their perspectives should be central to any discussions regarding the terminology used to describe their condition. Failing to include their voices risks marginalizing and disempowering the very community that should be at the forefront of shaping their own narrative.

Respecting Individual Identities

The rebranding of Asperger’s Syndrome without community consultation can be seen as disregarding the deeply personal and meaningful identities that individuals have developed around this diagnosis. For many, the term has provided a sense of validation, understanding, and a connection to a broader community. Dismissing this without thorough engagement with those affected may disregard the personal significance that the term holds for them.

Guarding Against External Influence

The decision to move away from the term “Asperger’s Syndrome” must be scrutinized to ensure that it is not influenced by external factors or driven by underlying tensions within the Neurodiversity community. The concern of jealousy, competition, or a hierarchy of experiences should not dictate the decisions that shape the language used to describe autism. By prioritizing the needs and perspectives of autistic individuals themselves, we can guard against the influence of ulterior motives and promote genuine inclusivity.

Advocating for Meaningful Consultation

To rectify the current situation, it is imperative to initiate a comprehensive and transparent consultation process with the autistic community. This should involve engaging a diverse range of individuals, including those who identify with Asperger’s Syndrome, to gather their thoughts, experiences, and preferences regarding the terminology used. By actively involving the community, we can ensure that decisions made are inclusive, respectful, and genuinely representative of the diverse experiences within the autism spectrum.


The decision to move away from using the term “Asperger’s Syndrome” without extensive community consultation raises concerns about the lack of inclusion and empowerment of autistic individuals. It is crucial to rectify this situation by engaging in meaningful consultation, and prioritizing the voices and perspectives of those directly affected. By doing so, we can ensure that decisions regarding the terminology used to describe autism are made collaboratively and reflect the diverse identities, experiences, and preferences of the autistic community. Inclusivity, respect, and empowerment should be at the core of any discussions surrounding the language of autism.