Late diagnosis of autism: exploring experiences of males diagnosed with autism in adulthood

Abstract

Autism Spectrum Disorder (ASD) is a pervasive neurodevelopmental disorder associated with qualitative impairments in social interaction, social communication and restricted, repetitive behaviour (American Psychiatric Association, 2013). Symptoms of ASD are first evident in infancy and childhood. However, individuals presenting with less overt ASD symptomatology may only be diagnosed in adulthood, when the expectation of independence and productivity results in a growing crisis for the individual. This study applied an exploratory qualitative research design to explore first-hand experiences of ten adult males (25 years and above) who were diagnosed with autism during their adulthood. Purposive sampling was used to select participants through the Neurodiversity Centre, Cape Town, South Africa. In-depth one-on-one interviews, guided by a semi-structured interview schedule were conducted. The thematic analysis technique and NVivo 12 qualitative analysis software were used to organise the data and identify themes. Three key themes emerged: failure to diagnose ASD in childhood despite signs and symptoms, ramifications of missed/misdiagnosis in childhood and adulthood on psychological well-being and the impact of receiving a diagnosis of ASD in adulthood. Missed/misdiagnosis had serious implications for psychological well-being throughout childhood and into adulthood. Late diagnosis resulted in missed opportunities for early intervention to address impairments associated with ASD. Receiving a diagnosis provided an explanation for long standing difficulties, offered a way forward in terms of developing coping strategies and allowed for self-acceptance. The implications of these findings for the development of better early screening and assessment for ASD are discussed and future research pathways suggested.

“I Always Knew I Was Different”: Experiences of Receiving a Diagnosis of Autistic Spectrum Disorder in Adulthood—a Meta-Ethnographic Systematic Review

“…Across the studies, the sample size ranged from eight (Atherton et al, 2022) to 77 participants (Lewis, 2016). All studies used a mixed-gender sample except for Leedham et al, (2020) who only included females and Lupindo et al, (2022) who only included males. The mean age of participants ranged from 29.8 years (Atherton et al, 2022) to 60.38 years (Hickey et al, 2018) and the mean age at diagnosis ranged from 34.75 years (Lupindo et al, 2022) to 49.19 years (Lilley et al, 2021.…”

“…Not describing how researchers' subjectivity was managed, reduces the credibility of results. Only the papers by Lupindo et al, (2022) and Stagg & Belcher, (2019) provided a reflexive comment on their positionality. However, other papers did describe some reflexive techniques (Leedham et al, 2020;Lewis, 2016;Lilley et al, 2021;Punshon et al, 2009).…”

Efficacy and tolerance profile of risperidone use in people with autism spectrum disorder in a clinic in Santarém, Pará, Brazil. A retrospective study

“…In girls, late diagnosis would also be caused by the development of compensatory measures, such as the act of observing and imitating neurotypical children. [ 18 , 19 ] This may also have influenced the fact that we found a significantly lower mean age at diagnosis in boys than in girls in our study.…”

How does a ‘Jewellery Club’ adaptation of the Lego Therapy intervention impact on social anxiety and interactions between girls aged 7 with social communication interaction difficulties?

“…Studies have suggested that autistic girls often go undiagnosed (Dworzynski et al., 2012, p. 793; Petrou et al., 2018, p. 32). This can lead to missed opportunities for early intervention and support regarding social communication and interaction difficulties (Lupindo et al., 2022); a common area of need for autistic individuals (Knott et al., 2006, p. 609). This in turn increases the risk of mental health problems, such as anxiety (Bargiela et al., 2016; Rae & Hershey, 2019, p. 113).…”

“…The negative impact on mental health cause by SCIDs is particularly true for late‐diagnosed autistic individuals (Lupindo et al., 2022). However, much of this research relies on small sample sizes with a bias towards autistic males; in White and Roberson‐Nay's (2009) sample, 18 of the 20 participants were male.…”