Social Spectrum Study: a multicenter study on Autism Spectrum Disorders in the South West of the Netherlands

Broadening of the concept from narrowly defined autism to a broader category of
autism spectrum disorders (ASD) has increased variation among children with ASD
on autistic core dimensions (social-communication and rigid
behaviour/restricted interests) as well as on related developmental dimensions
(e.g., co-occurring emotional and behavioural problems, and cognitive,
adaptive, sensory, and motor functioning). There also exists variation in
behaviours across contexts. Heterogeneity of ASD complicates diagnosis and
research into the underlying genetic and neurobiological mechanisms. The Social
Spectrum Study will address this obstacle by carefully and comprehensively
characterizing ASD and other developmental traits in a representative cohort of
children and adolescents with ASD. This provides the opportunity to distinguish
more homogenous ASD subgroups with similar developmental characteristics, and
link these different subgroups to distinct patterns of genetic and
environmental aetiology, familial and societal burden.

The present study has the following objectives:
1) Investigating the clinical utility of screening instruments. As a part of
this objective, we will examine how several demographics (e.g. ethnicity)
affect the assessment of autistic and other developmental traits, and how the
use of different informants can be complimentary.
2) Autistic phenotype characterization: Examining interrelationships between
autistic and other developmental traits and differentiating subgroups within
ASD with similar phenotypic profiles.
3) Link profiles of key autistic and other developmental traits to several
aetiological factors such as familial loading.
4) The impact of ASD: investigating predictors of individual, familial, and
societal burden.

Spectrum is a multi-centre study, in which six youth mental health care centres
in the South West of the Netherlands will collaborate: Emergis (Zeeland), GGZ
Westelijk Noord-Brabant (Bergen op Zoom), Lucertis (Rotterdam e.o.), Riagg
Rijnmond (Rotterdam + Schiedam), Erasmus MC-Sophia (Rotterdam) en Yulius
(Barendrecht + Dordrecht). The study will include all children aged 1,5 - 10
years old that are consecutively referred to one of the six participating youth
mental health care centres during one year (~1 April 2011 - 1 August 2012).
Before intake, all referrals will receive a registration form - that assesses
demographics (including ethnicity and prior care use of the child) - and
several screening questionnaires - that assess various developmental problems,
including autistic social impairment. These questionnaires will be part of the
standard clinical protocol. Children who are identified with possible ASD
(screen positives; ca n = 400) and a randomly selected comparison group of
children with a variety of other developmental problems (screen negatives; ca n
=200) will be invited for participation in the present study. When children and
parents/caregivers consent to participation, they will receive gold standard
diagnostic procedures (including parent interview and sometimes an
observational assessment of the child), and research into other developmental
characteristics of the child, family characteristics and functioning will take
place.

The risks of participating in the present study are negligible. Information
will be collected using questionnaires, interviews, and direct behavioural
assessment of the child. An advantage of participating is that the participants
will go through a comprehensive assessment using golden standard diagnostic
instruments that are not always used in local health services because of the
time investment and training qualifications that are needed to use these
instruments. If participants provide consent, the information from these
assessments can be reported back to the clinicians, so this information can be
used in the evaluation of the clinical diagnosis en in the forming of treatment
plans. Since autism spectrum disorders are childhood neurodevelopmental
disorders, it is important to study children with ASD from an early age on.