30827
A New Adult Screening Measure for Autism, an International Collaborative Project and Initial Results
Despite increasing rates of autism diagnoses among children, evidence suggests that many adults with autism remain undiagnosed. Internationally, adults seeking diagnostic evaluations are sometimes screened with tools originally designed for children or adolescents, or that were designed as measures of autistic traits in the general population. Due to the proprietary nature of some tools, assessments can also be expensive, even in places with universal healthcare.
Objectives:
The aim was to make a free adult autism screening measure with collaboration from those with autism and other stakeholders. All participants took a preliminary version of the questionnaire and could offer feedback on items and wording.
Methods:
An English language questionnaire was made, based on the type of difficulties commonly experienced by autistic adults. As the autism spectrum includes those who may not use spoken language or may have intellectual challenges, adult siblings, parents, care workers and others with extended close contact with an autistic person were invited to participate. To increase participation from several countries, social networking was used. There were 32 items focusing on typical areas of struggle for autistic adults. For most questions, the participant was given age ranges to indicate when the difficulty was first noticed: 2-5, 6-12, or 13 and older; never; or that the difficulty was no longer an issue. There were four open ended questions addressing difficulties with language, other medical diagnoses, mental health diagnoses and whether additional questionnaire items might be needed.
Results:
Participants were 780 adults (81% autistic). By age, 42% were between the ages of 18-24, 28% were 25-33, 19% were 34-45, and 9.5% were 46-60. Participants were from 25 countries, including all predominately English-speaking countries, several EU countries, India, Pakistan, Japan, Israel, South Africa and Brazil. Each open-ended question received several hundred responses.
For 27% of respondents, recognizing people by face was noticed as a struggle, and somewhat of a struggle for 40%. Anxiety or worry emerged as a struggle for 35.4% between ages 2-5; only for 2.5% was it never an issue. For 2.3%, suicidality began between the ages of 2-5, and for 21.4% it began between 6-12. Feelings of isolation for 23.5% began between the ages of 2-5, and for 40% of participants, it began between the ages of 6-12. Post-traumatic stress disorder was reported by 207 participants.
Full measure and responses with gender breakdown for male, female and non-binary will be presented, as well as analysis of qualitative responses.
Conclusions:
We believe this measure can aid with the differential diagnosis in autistic adults. The items together have the ability to characterize clinically important difficulties beyond DSM diagnostic criteria, such as isolation, anxiety, suicidality, prosopagnosia, academic issues, sensory issues and more. In our sample, autism in adults coincides with prosopagnosia in two-thirds of respondents, and with self-report of suicidality in almost a quarter in the teen years. The adult perspective on autism herein provided may also aid in guiding treatment plans for a younger cohort with this diagnosis.