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  • Writer's pictureAmy Duffy-Barnes

Respecting Autistic Voices: Why Non-Autistic People Need to Stop Defining the Autistic Experience

The diversity of human experiences enriches our world, and embracing this diversity is essential for creating an inclusive and understanding society. Just as it is offensive and inappropriate for white people to define the experiences of the BIPOC community, or for men to speak for women, non-autistic individuals must stop trying to define the autistic experience. In this blog article, we explore the importance of respecting and amplifying autistic voices, shedding light on why such presumptions are offensive and unhelpful.

Understanding the Autistic Experience

Autistic individuals possess unique insights, perspectives, and strengths that form the core of their identities. Trying to define or speak on behalf of autistic people undermines the actuality of their lives, perpetuates harmful stereotypes, and often misdefines what the autistic experience is. If you haven't lived it, you don't understand it. You might have insight here or there, and you catch glimmers, but not enough for you to speak articulately and accurately about the autistic experience. So many times the voices speaking "for" and often over autistic voices deliberately minimalize or discredit the value of autistic people because it is in their interest to silence and invalidate autistic voices and experiences.

There are organizations such as Autism Speaks that only have validity if they can silence or discredit our population in order to justify the existence of their organization by demonstrating the 'need' to speak for us. That is why Autism Speaks insists that a high number of autistic people are intellectually impaired. There are people at all three support levels of autism that are in fact quite intelligent, they just don't speak the same language as allistic people. But to silence their voices, to speak over their voices, and to make a profit off silencing them, of speaking for them, defining what you think they need based on what you want to sell them or their families is unacceptable, unethical, and needs to stop. Yes, I am speaking to you, ABA industry. You silence autistic voices to sell parents the dream of having neurotypical-acting children at the cost of the autonomy, identity, and mental health of the autistic population.

The Harm of Defining the Autistic Experience

  1. Erasure of Autistic Voices: Defining the autistic experience silences the voices and lived experiences of actual autistic individuals. It diminishes the value of their narratives, dismissing their agency and contributions to the conversation.

  2. Stereotyping and Misrepresentation: Attempting to define autism without lived experience may lead to harmful stereotypes and misrepresentations. These misinterpretations can perpetuate stigma, hindering true understanding and acceptance.

  3. Disempowerment and Tokenization: Non-autistic individuals who define the autistic experience inadvertently disempower autistic voices, using them merely as tokens or props to support their own narratives.

  4. Neglecting Intersectionality: The intersection of autism with other identities, such as race, gender, and sexuality, shapes unique experiences that cannot be generalized. Non-autistic individuals may overlook these intersections when defining autism.

The Role of "Autism Moms", Autism Speaks and the ABA Industry

'Autism moms' and organizations like Autism Speaks or the ABA industry have historically played a dominant role in shaping the narrative around autism. However, it is crucial to recognize that non-autistic parents, no matter how well-intentioned, cannot fully comprehend the autistic experience. Autistic individuals themselves are the only true experts when it comes to defining their lives and experiences. I say this with all due respect to the neurotypical and neurodivergent parents of autistic children. I am an autistic parent of an autistic child myself. But as a neurodiversity-affirming parent, I will not speak for my child, I will not let others speak for my child or define what he needs.

Moving Towards Inclusivity and Respect

  1. Listening to Autistic Voices: Instead of assuming or defining the autistic experience, we must listen to the narratives of autistic individuals. Their insights are invaluable in fostering empathy and understanding.

  2. Amplifying Autistic Voices: Amplify autistic voices by sharing their work, art, and writings. Support and uplift their perspectives in discussions about autism.

  3. Educating Yourselves: Educate yourself on the challenges faced by the autistic community through reading books, and articles, and watching films created by autistic authors and creators.

  4. Challenging Stereotypes: Consciously challenge stereotypes and misconceptions about autism. Recognize that autism is a spectrum with a wide range of unique experiences.

Defining the autistic experience as non-autistic individuals is offensive, harmful, and

undermines the authenticity of autistic voices. It minimizes, invalidates, and in some cases endangers autistic people and their ability to have autonomy. Embracing the neurodiversity of our society requires listening to and amplifying the experiences of autistic and other neurodivergent individuals. By doing so, we create a more inclusive and compassionate world where diverse voices are respected and celebrated, fostering true understanding and empathy. Let us embrace the wisdom that comes from lived experiences and work together to build a world that respects the autonomy and uniqueness of every individual, regardless of their neurotype. To all of my autistic neurokin it is time we tell the voices speaking over ours and in place of ours to respectfully shut the hell up.

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