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Autism

Healing the Invalidation: The Complex Truth of Autism

Autism: a superpower or a disability? Let's heal the hurt of these arguments.

Key points

  • “Autism is a superpower.” “No, autism is a disability.” Such arguments hurt autistic communities.
  • Lessening the discord requires remembering the distinction between “my truth” and “objective truth.”
  • Our lived experience is true, and our reality is true. To us. But they may or may not be true to others.
  • Moving forward requires respecting the lived experience while also seeking the objective truth.
By Freepik / Freepik
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Source: By Freepik / Freepik

“Autism is a superpower.”

“Autism is not a superpower.”

“Autism is a disability.”

“Autism is not a disability.”

Arguments about these statements have caused much pain and grief within autistic communities—at work, on social media, and even within families. Friends had fallen out. Collaborations had fallen apart. Hearts had been broken.

Let’s try to heal this pain.

If we better understand why these arguments are so triggering, perhaps we can also find a solution.

Why do we feel so emotional about these statements?

For many autistic people, the experience of being misunderstood, dismissed, abused, or gaslit by neuroableist society is a lifelong struggle. This invalidation is deeply emotional. The autistic community is often seen as a refuge—when we find it, we often feel that, finally, we can share our truth and our lived experience. We can, finally, be heard.

When others in the community challenge our truth, the pain can be intense. It can deepen the lifelong pain of invalidation and feel like a betrayal. We may become dysregulated and have difficulty accessing our rational minds. We may run to others—who may be just as traumatized as we are—in search of support.

But if we could access our rational minds, we could focus on the distinction between “my truth” and “objective truth.” And that could bring us back to empathy and respect.

The Nature of "My Truth" and Objective Truth

"My Truth":

  • Subjective: Rooted in personal experience, feelings, and perceptions.
  • Unique: Reflects the distinct lived realities of an individual.
  • Dynamic: Can change over time based on personal development and experiences.

Objective Truth:

  • Empirically verifiable: Based on empirical evidence and scientific research.
  • Collective: Applies broadly, beyond individual experiences.
  • Stable: Remains consistent unless significant new evidence emerges or societies and cultures change.

Our lived experience is true, and our reality is true. To us. But they may or may not be true to others.

Example: Autism as a Superpower

  • My Truth A: Statement: "My autism is my superpower.” This means that autism gives me unique abilities like exceptional memory and focus. Contextualized meaning: autism gives me unique abilities like exceptional memory and focus, and I had opportunities and support to take advantage of these abilities.
  • My Truth B: Statement: "My autism is not a superpower.” This means that autism significantly affects my ability to function in sensory-challenging environments and my daily life. Contextualized meaning: autism makes sensory-challenging environments torturous, and because I do not have the means to avoid such environments, my daily life hurts. I have not had the opportunities and support to develop and apply my strengths.
  • Objective Truth: While some autistic people have remarkable talents, autism can also involve struggle, often exacerbated by intersectional challenges, such as poverty or physical disability. Autism may or may not be experienced as a superpower.
  • Problems Arise: when “my truth” is stated as objective truth: "Autism is/is not a superpower.”

When any human's truth, regardless of neurotype, is presented as objective truth, it is usually an over-generalization. For example, stating "autism is a superpower" as a universal fact ignores the varied and complex realities of other autistic individuals. This simplification can disregard the genuine challenges some people face, creating a partial understanding of autism. Taking care to present our truth as our lived experience rather than as the objective truth can help avoid much pain and hurt stemming from:

  1. Invalidation of Others’ Experiences: Presenting personal truths as universal can invalidate the experiences of others. For instance, if someone insists that "autism is not a disability" based on their positive experiences, it can dismiss the struggles and legitimate needs of those who do experience autism as a disability – whether their autism struggles are more intense, or their environments less supportive. For example, a person with significant noise sensitivity likely experiences a noisy world as more challenging than those without such sensitivity. Of the two people with relatively similar levels of noise sensitivity, the one who has plenty of private, quiet space will likely experience autism as less disabling than someone who is never afforded privacy and quiet.
  2. Concerns about Misleading Advocacy and Policy: Advocacy and policy-making based on subjective truths can be problematic. For effective support and inclusion, policies must be grounded in objective truths that consider the broad range of autistic experiences. Presenting personal truths as universal facts can lead to misguided advocacy that fails to address the entire community's needs – or to fears of such advocacy and “preemptive counter-advocacy.”

Moving Forward: Respecting the Lived Experience, Seeking the Objective Truth

Integrating different experiences and perspectives is essential for a holistic understanding of autism. Failing to acknowledge this diversity can lead to conflicts and a lack of solidarity. To address the problems arising from conflating "my truth" with objective truth, it is essential to:

  1. Respect the Diversity: Both positive and challenging aspects of autism are valid and deserve recognition.
  2. Clarify and Contextualize Statements: Clearly distinguishing between personal experiences ("my truth") and universal facts (objective truth) helps prevent misunderstandings and respects the validity of all perspectives.
  3. Promote Inclusive Narratives: Encouraging the sharing of multiple personal narratives while grounding discussions in empirical evidence can help us embrace the complexity of autism. This is what I aim to do in my book, The Canary Code: A Guide to Neurodiversity, Dignity, and Intersectional Belonging at Work, by including multiple stories of lived experience along with academic research.
  4. Facilitate Learning: Supporting research on autistic experience informed by multiple lived experience perspectives can get us closer to the objective truth.
  5. Educate, Gently: Gently educating others about the distinction between subjective and objective truths can reduce conflicts over time. Educating is not the same as shutting down and invalidating someone's lived experience. Asking "Would you mind re-phrasing" (an overgeneralized statement into a personal statement) is not the same as insisting that someone "should not say that."
  6. Advocate, Responsibly: Understanding the responsibility of advocacy encourages promoting policies that consider the full spectrum of autistic experiences and developing alliances across our differences.

Effective self-regulation in the heat of the moment is difficult. We need to understand our triggers and be gentle with ourselves if we fail. Over time, however, we can develop a habit of focusing on the dignity of everyone involved while handling disagreements.

Conclusion

Lived experience shapes who we are, how we think, and feel. Our emotions tied to these experiences are powerful and legitimate. However, stating "my truth" as if it were an objective truth can lead to misunderstandings, inadvertently invalidate others' experiences, and create divisions within the community. Recognizing the difference between personal narratives and universal facts can help us facilitate a more inclusive and respectful dialogue, as well as more effective advocacy. Affirming the legitimacy of diverse experiences within the community also helps ease the emotional pain of invalidation.

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