Erin L. Miggantz, Ph.D.
Adult Autism Assessment

Experiences of Late-Diagnosis Among Autistic Adults

 

Participants:

Twenty people participated (qualitative study):

• Seven healthcare professionals specializing in autism and ADHD diagnosis (3 men; 4 women)

• Thirteen late-diagnosed adults (5 with autism, 5 with ADHD, 3 with autism+ADHD) 

• Participants were from different countries (UK=15; US=2; France=1; Germany=1; Australia=1) 

Participants varied by:

• Age (30-62 years old)

• Time since diagnosis (unspecified amount of time) 

• Gender (4 men; 8 women; 1 nonbinary)

 

Inclusion Criteria:

Participants were required to be over age 25 and to have received their diagnosis at least 4 years ago

 

Methods:

Semi-structured interviews were conducted. These interviews were created with input from 9 adults in the UK diagnosed with autism + ADHD

 

Results:

Five themes were identified that represent the late-diagnosed adult’s experiences, both positive and negative:

 

Theme 1: The key role of relationships and mental well-being:

Prior to diagnosis, adults reported feeling like targets that could be easily taken advantage of, and often believed others’ negative ideas of them to be true

• Post-diagnosis, adults experienced improved relationships, and recognized that they were not “broken”

 

Theme 2: The wider impact on well-being and lifelong mental health:

Prior to diagnosis, adults reported a sense of not fitting in and/or being different. All participants reported substantial pre-diagnosis mental health symptoms

• Diagnosis instilled hope, improved self-understanding, and validated past experiences

• Diagnosis also improved emotional regulation and communication and decreased meltdowns and burnouts

 

Theme 3: Understanding—the answer to postdiagnosis changes:

Diagnosis helped adults to understand the “why,” leading to increased self- and other-acceptance and validation, and providing a framework with which to navigate the future

 

Theme 4: The flip side of diagnosis—the burden of a label:

Other people may stigmatize or have a deficit-based understanding of autism and ADHD 

Other people may invalidate the diagnosis because you do not seem “autistic/ADHD enough”

• These reactions from other people led some late-diagnosed adults to question their own diagnosis

 

Theme 5: Are you ready—the importance of timing:

Some people may experience anger and regret post-diagnosis, with thoughts of “what could have been” had they been identified earlier. Having post-diagnosis support is imperative. Interestingly, most adults believed that earlier diagnosis may not have been helpful anyway due to:

• Stigma was higher in years past

• Some believed that without diagnosis, they worked harder and became more successful than they may have otherwise

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French, B., & Cassidy, S. (2024). “Going Through Life on Hard Mode” - The Experience of Late Diagnosis of Autism and/or ADHD: A Qualitative Study. Mary Ann Liebert, Inc. Publishers, Epub online ahead of print. https://doi.org/10.1089/aut.2024.0085