Autism spectrum disorder: developmental course from childhood to adulthood and predictors for societal participation

Previous studies indicate that a large majority of adults with ASD do not
achieve conventional markers of adulthood in societal participation like
becoming self-supporting, living independently, getting education and a job and
developing a network of friends (Howlin, Goode, Hutton, & Rutter, 2004;
Orsmond, Shattuck, Cooper, Sterzing, & Anderson, 2013). However, prospective
studies concerning the long-term outcome of individuals with ASD symptoms in
childhood are sparse. Also, most previous studies focussed on the most severely
impaired individuals with ASD, i.e. autistic disorder (AD) and a cognitive
impairment, while nowadays the majority (about 75%) of individuals classified
with ASD are less severely impaired and they do not have a cognitive impairment
(Postorino et al., 2016; Rogers & Dawson, 2010). More research is needed to
evaluate the developmental course of these cognitively able individuals with
milder ASD symptoms, and their societal participation in adulthood. This can
ultimately contribute to more adequate and efficient treatment and/or support
policies for this group.

The objective of this study is to determine the changes over time of ASD
symptoms and co-occurring psychiatric symptoms from childhood to adulthood and
to investigate societal participation in adulthood, with an emphasis on
education and employment.

The current study is a prospective longitudinal study. The first two assessment
waves have already taken place. The first assessment wave, took place between
July 2002 and September 2004, when participants were six to twelve years old.
Seven years later, the second assessment wave took place between June 2009 and
May 2011, when participants were twelve to nineteen years old. Again seven
years later, between January 2017 * March 2019, we will conduct the third
assessment wave (i.e. current MEC application) when participants will be 19 to
26 years old.

The risk for participation in the current study will be negligible and the
burden will be kept as minimal as possible. The participants will be asked to
fill out several questionnaires and they will be asked to visit the outpatient
department of Child an Adolescent Psychiatry/psychology once, with a maximum
duration of two hours (after saturation effect approximately one hour) to
assess current ASD symptoms and to collect information concerning societal
participation. Parents, caregivers or the partner of the individuals will be
asked to fill out a few questionnaires. If agreed upon, a semi-structured
interview of half an hour will be conducted with employers. The benefits of
participating in the current study will include a small offering for the young
adults, their parents/caregivers/partner and their employers, and newsletters
and a symposium concerning the outcomes and implications of the study.