Adults Presenting for a First Diagnosis of An Autism Spectrum Disorder: Issues and Opportunities

Background:  Although intellectually able individuals with ASD or Asperger's are now more often diagnosed in childhood, many are not identified until late adolescence and some not until middle or late adulthood (van Niekirk, Groen, Vissers et al, 2011). There are as yet few studies of their characteristics and needs. Some studies suggest that symptoms of ASD persist throughout life and that as adults these individuals have significant problems in life adjustment (Jantz, 2011; Stuart-Hamilton & Morgan, 2011) as well as frequent psychopathologies (Lehnhardt, Gawronsky, Volpert et al 2011; Lugnegard, Hallerback & Gillberg, 2011).  Many questions remain about the developmental course of such persons; the reasons for late diagnosis; factors associated with better or worse outcomes; sex differences; characteristic areas of dysfunction and their effects on adjustment; associations of psychopathologies with ASD; and optimal approaches to intervention.

Objectives:  We report findings on a sample of clinic referred older adolescents and adults of average or greater IQ aged 17 -64 years (26% female) who presented for a first diagnosis of an ASD.  We examined characteristics of individuals who present late for diagnosis, as well as comorbid disorders that could potentially mask an underlying ASD. We also examined differences between adults who had and had not achieved adult life milestones including marriage/long-term partnership; stable employment/self-support; and independent residence.

Methods:  Patients were assessed using a combination of the Ritvo Autism Asperger Scale, the Autism Spectrum Quotient, the Empathy Quotient, developmental and psychiatric history and extensive clinical interview.  Subsets of patients also received the Social Responsiveness Scale (adult revision), the ADOS Module 4, the Personality Assessment Inventory, the Adult Self Report and the Adult Behavior Checklist.

Results:  About 25% of the sample were employed full time, 25% were unemployed, and the rest either worked part-time or were students. About 50% had experienced difficulty sustaining employment. Thirty-one percent were living independently, 18% in a transitional (supported) situation, and the rest lived with their families.  Twenty-three percent were married or partnered or had been so in the past, of these, almost all reported experiencing marital adjustment problems. With regard to psychopathology, 72% met DSM-IV TR criteria for one or more anxiety disorder, with the most common Generalized Anxiety Disorder, OCD, and Social Phobia; 36% met criteria for a depressive mood disorder, 36% for ADHD, and 23% for a specific learning disability.  Results thus far suggest that neither age nor intellectual level differed between individuals with more and less favorable outcomes in this group.  Moreover, significant psychopathology was common in all subsets of this sample.  Those with higher educational level were not more likely to be employed, or married or to live independently. 

Conclusions: Adolescents and adults who present for a first diagnosis of an ASD are diverse in their social, vocational and residential status.  In this sample, the great majority had significant treatable psychopathology, including in most cases an anxiety disorder.  Outcomes were not clearly related to intellectual ability, age, educational level or psychopathology.  Further investigation of risk factors for unfavorable outcome is underway.