A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults.

Lewis (2017) asked 665 adults why they put off getting an autism diagnosis. The team used a mixed-methods survey. People wrote open answers and ticked boxes.

Questions covered cost, travel, fear, and past clinic experiences. The goal was to rank the biggest roadblocks.

The top barrier was simple: 'Professionals won’t believe me.' Fear of disbelief beat cost, distance, and wait time.

Many adults said they had already masked traits for decades. They dreaded hearing, 'You don’t look autistic.'

Cage et al. (2024) extends this finding. Their photovoice study shows the same fear in real time. Adults photograph clinic doors and waiting rooms that feel cold and judging.

Zidane Burgess et al. (2026) adds a twist. Gender-diverse and cis-female clients face extra delays because clinicians mis-label them with personality disorders first. The fear of disbelief is even stronger in these groups.

Wilson et al. (2023) widens the lens. Caregivers of youth aged 16-30 report that later diagnosis itself becomes a barrier to services. The later the label, the harder it is to find help. Together the papers paint one chain: fear → delay → missed support.

Start every adult intake by saying, 'I believe you.' Validate self-report before you open the protocol. This single sentence cuts the biggest barrier Foran found. Build trust first, then test. You will see lower no-show rates and fuller disclosure during assessment.