Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review

Abstract

Background:

Growing numbers of adults are seeking and receiving autism diagnoses. This systematic review collates, evaluates, and synthesizes evidence on the lived experiences of receiving a diagnosis of autism in adulthood.

Methods:

A keyword-search was performed on six databases, with results systematically screened to identify relevant studies. Data extracted from the studies were analyzed using thematic synthesis.

Results:

Initial searches produced 12,785 articles, 26 of which were included and subjected to thematic synthesis. We identified two meta-themes: Constantly Struggling, related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma; and Revelation, involving (1) emotional reactions to diagnosis, and (2) forging an autistic identity.

Discussion:

While diagnosis can grant understanding, acceptance, and community, autistic adults continue to struggle with stigma, regret, and inadequate support post-diagnosis. Understanding the first-person perspectives of those who have acquired an autism diagnosis in adulthood is vital in developing sensitive and effective assessment and support services for adults.

Community brief

Why is this an important issue?

Growing numbers of people are seeking and receiving autism diagnoses as adults. Understanding their first-hand experiences before, during, and after diagnosis is key to developing high-quality assessment and support services.

What was the purpose of this review?

This review aimed at bringing together and synthesizing previous research that has explored how adults experience acquiring an autism diagnosis.

What did the researchers do?

The researchers conducted electronic keyword-searches of six academic databases. This identified a large number of studies that were potentially relevant to the review. Through a structured screening process, the researchers ultimately found 26 studies containing data on lived experience of autism diagnosis. These were analyzed to identify key areas of commonality and difference.

What were the results of the review?

The review suggested that experiences of adult autism diagnosis showed two overarching themes. First, autistic adults who participated in these research studies reported their experiences of “constantly struggling,” which involved a discussion of difficulties related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma. Second, autistic adults saw the receipt of their diagnosis as a “revelation,” describing their (1) emotional reactions to diagnosis, and how it set them on a path to (2) forging an autistic identity.

What do these findings add to what was already known?

The review brings together previously disconnected studies, to highlight the strength of evidence showing the psychological, social, and emotional complexities involved in acquiring an autism diagnosis in adulthood.

What are potential weaknesses in the review?

For practical reasons, the review had to set certain limitations in the body of literature it could consider, for example, only English-language publications that were available in electronic journal articles. This might have meant that certain relevant findings were overlooked.

How will these findings help autistic adults now or in the future?

This review provides a valuable resource for adults considering pursuing a diagnosis, alerting them to the potential challenges and benefits they can expect. The results of the review can also be used by health care professionals and policy-makers involved in designing or delivering adult autism diagnosis, to ensure services are sensitive to the concerns of autistic adults themselves.