🎙️🔴 ASD Part 5 - From Gatekeeping to Care

Neurolight Series — Part V
Rebuilding Diagnosis Without Erasure

asd5

Abstract

After decades of exclusion, misdiagnosis, and systemic harm, adult autism assessment requires more than incremental reform—it requires ethical reorientation. This article proposes a care-centered framework for adult autism diagnosis that replaces gatekeeping with listening, performance metrics with process awareness, and administrative closure with accountability. Drawing together insights from the previous parts of the Neurolight series, Part V outlines what ethical assessment must become if it is to serve neurodivergent adults rather than erase them.

1. Diagnosis Is Not a Test — It Is an Intervention

Assessment is not neutral.

Every diagnostic encounter:

  • shapes self-understanding
  • redistributes power
  • alters access to care
  • leaves psychological residue

When diagnosis is framed as a test to be passed or failed, it inevitably harms those whose survival has depended on adaptation.

Ethical assessment begins with a different premise:

Diagnosis is an intervention, not a verdict.

2. From Traits to Needs

Traditional models ask:

  • “Does this person show autistic traits?”

Ethical models ask:

  • “What does this person need to live safely and authentically?”

Traits without context obscure:

  • effort
  • cost
  • recovery
  • cumulative harm

Needs-based assessment centers function, not appearance.

3. Process Over Performance

Adult autism assessment must evaluate how outcomes are achieved.

This includes:

  • time required to respond
  • reliance on explicit reasoning
  • internal uncertainty
  • cognitive and emotional fatigue
  • post-interaction shutdown or recovery

Correct answers reached through exhaustion are not evidence of ease.

Performance without cost analysis is incomplete data.

4. Narrative Is Evidence

Lived experience is not anecdotal noise.

Narrative provides:

  • temporal consistency
  • developmental context
  • meaning-making
  • insight into adaptation

Ethical assessment treats:

  • self-report
  • informant accounts
  • longitudinal narrative

as primary data sources—not secondary embellishments.

5. Uncertainty Is a Diagnostic Signal

Statements such as:

  • “I don’t know what people mean”
  • “I need time to reflect”
  • “I follow principles instead of intuition”

should raise diagnostic attention, not exclusion.

Uncertainty indicates:

  • absence of intuitive access
  • reliance on reasoning
  • ethical restraint

These are not signs of neurotypicality.

6. Intersectional Safety Is Non-Negotiable

Ethical assessment must explicitly account for:

  • trans and gender-diverse identities
  • co-occurring ADHD
  • trauma histories
  • cultural and linguistic difference

There is no neutral baseline.

Ignoring intersectionality reproduces harm under the guise of objectivity.

7. Accountability Beyond the Report

Care does not end when the PDF is issued.

Ethical systems provide:

  • meaningful appeal pathways
  • documented uncertainty
  • revision without penalty
  • follow-up options
  • transparent complaint handling

Discharge must not function as erasure.

8. Redefining Diagnostic Success

Success is not:

  • a fast assessment
  • a clean binary outcome
  • institutional closure

Success is:

  • increased self-understanding
  • reduced shame
  • access to appropriate support
  • preserved dignity
  • minimized harm

If an assessment leaves a person destabilized, it has failed—regardless of outcome.

9. The Role of the Clinician

Ethical clinicians are not gatekeepers.

They are:

  • witnesses
  • interpreters
  • stewards of complexity

Their task is not to protect systems from risk, but to protect people from erasure.

Conclusion

Autistic adults do not need better tests.
They need systems capable of listening.

When diagnosis shifts from gatekeeping to care, assessment becomes what it should have always been: a collaborative process that names reality without punishment and offers understanding without demand.

Listening is not an optional courtesy.
It is the intervention.

References

  • NICE NG128 (2018). Autism spectrum disorder in adults.
  • American Psychiatric Association. DSM-5-TR (2022).
  • Livingston, L., & HappĂŠ, F. (2017). Compensation in autism.
  • Hull, L. et al. (2017). Social camouflaging in adults with autism.
  • Pearson, A. et al. (2023). “Masking is life.”
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