Self-Diagnosis in Adults with Presumptive Autism Spectrum Disorder

Background: as the prevalence of autism spectrum disorder (ASD) is constantly rising, an increasing number of adults with ASD is expected. Delayed diagnosis is quite common in subjects without cognitive impairment: these adults may be capable of functioning independently, but they frequently have to face challenges in everyday life (i.e. job, interpersonal relationship) which could lead to significant psychiatric comorbidities (i.e. depression), determining a reduction in the quality of life. Diagnosing ASD in adulthood is a challenge for the clinicians and only few specialized centers are available. Therefore, adults with presumptive autistic traits often rely on self-diagnosis, using the internet.

Objectives: the aim of the present study is to study the characteristics of self-diagnosed individuals who subsequently obtained a formal ASD diagnosis.

Methods:: 89 subjects who self-diagnosed themselves with ASD were evaluated by means of clinical interview for DSM 5 and standardized tests (ADOS 2 module 4, ADI-R if caregivers were available, cognitive tests). Sociodemographic and clinical characteristics were obtained for each subject.

Results: among self-diagnosed subjects only the 58.4% (n=52) obtained a formal diagnosis of ASD. These subjects showed low severity of symptoms according to DSM 5 (level 1: 57.7%; level 2: 40.4%), were more frequently males (71.2%), unemployed (52.9%) and single (90.4%). Nearly half of self-diagnosed subjects with a confirmed ASD had received at least one previous psychiatric diagnosis other than ASD (47.1%). Only 28.8% were on psychotropic medications. In stepwise logistic regression analysis, presence of a confirmed diagnosis in self-diagnosed subjects was significantly predicted only by age at evaluation (B=-0,086, SE=0,023, p<0.001).

Conclusions: There is an increase in ASD self-diagnosis in adulthood. This phenomenon may be link to increase knowledge and popularity of ASD in the media and may eventually lead to an increased request of formal diagnosis. However, ASD symptoms in adult not previously diagnosed may be subtler and covert, thus requiring trained clinicians.