Grip on Behavior: Influencing factors on societal participation, especially education and work, of young adults with average intelligence and autism spectrum disorder with behavior problems

In recent years, a lot has changed for people with an autism spectrum disorder
(ASD), their immediate environment and the authorities involved. With the
transfer of tasks to the municipalities (Jeugdzorg, AWBZ), the introduction of
the Wet Passend Onderwijs and the Participatiewet, the government appeals to
the self-management and the own responsibilities of people in need of support.
If support is needed, this should be organized closely to the citizen, in close
cooperation with the school / education and other parties involved, such as
youth care, WMO-care and the labor market. The parties involved signal that
these changes lead to a higher risk for adolescents and young adults with ASD
of dropping out of school or not being able to get or hold a job. It involves
mainly adolescents and young adults with an average intelligence, ASD and
additional problem behavior, in particular externalizing behavior problems.
These problems make participation in education and / or work more difficult and
they have negative consequences for sustainable participation in school /
education or work. This puts independent participation in social life, as far
as possible, at stake. The problems of this group of young adults are
especially prominent between the ages of 16 and 25 years. Over the last two
decades there has been an increase in the number of people diagnosed with ASD.
About 1% of all people, or possibly even more, have ASD. Many people with ASD
also have a second diagnosis, in about 60% of these people the second diagnosis
is a behavioral problem. Having psychiatric problems, such as behavioral
problems, in addition to ASS, leads to an even greater negative impact on
day-to-day functioning such as participation in school / education and work.
Only one third of the young adults with ASD attend regular education and only
25-30% of people with ASD over the age of 18 have income from labor as the main
source of income. Being unable to participate in school / education and work
because of ASD and externalizing behavior problems is an undesirable situation,
as this is a prerequisite for overall health and functioning in society.
Informal support from one*s own network can influence social functioning
positively. During the treatment it is important to imbed the role of the
social network in the intervention. Patients are in treatment for a certain
period of time, but rely later mainly on their own network.

To gain insight in needs for support and factors that support or hinder
participation in school / education and work, with special attention for the
transition from school / education to work, for young adults (16-25 years) with
an average intelligence (IQ> 70) with an autism spectrum disorder and
externalizing problem behavior.

This study will provide a framework for a tool that integrates the knowledge
gathered in this study. We aim to increase the expertise of professionals with
regard to early detection, so that they can intervene at an early stage, to
minimize or prevent stagnation of societal participation.
This tool is aimed at:
- What is needed to (keep) participating in school / work
- Advices how to provide *informal* support
- What are the elements of treatment that aid the target population

We will formulate recommendations that will be integrated in the Care Standard
ASD

In this exploratory mixed-method study qualitative and quantitative research
methods are used parralelly to evaluate the influencing factors on societal
participation of young adults with ASD and externalizing problems. These
factors will be retrieved through:
1. A literature study, with both scientific and grey literature;
2. Focus groups with diverse perspectives; young adults with ASD, *nearest and
dearest* of the target population, professionals, employees of educational
institutions & employers who have employees that belong to the target population
3. Interviews with:
- Young adults with average intelligence, ASD and externalizing behavior
problems, who had or are having problems with societal participation and
received ambulant treatment or were admitted in an in-patient mental health
clinic for ASD and externalizing behavioral problems ((sub)clinical score on
the YSR of CBCL or a treatment goal) one to two years before the start of the
study.
- Nearest and dearest of the young adults who play(ed) an important role
regarding societal participation of the target population.

In the third part of the study (the interviews), the young adult is asked
permission to examine their electronic medical file in the mental health clinic
on the extent to which potential influencing factors of societal participation
were of concern during the treatment.

Three experience experts (*ervaringsdeskundigen*) are included in the
projectgroep of this study and provide input right from the start to
incorporate the ideas of the target population in the gathering of knowledge
and the development of appropriate products.

The risk of participating in this study is negligible because the study is
mainly focused on the retrieval of information (of non-therapeutical nature).
The same goes for the nearest and dearest / professionals / key figures from
education and employers, and other people involved in this study.

An introductory conversation will take place before hand, by telephone, with a
duration of approximately 15 minutes. In this conversation the researcher will
determine if the person is suitable for inclusion in the study. The target
population who cooperate with the interview will complete a questionnaire prior
to the interview, the duration of this is thirty minutes. The interview will be
held at a location the participant preferres, and will last one hour at most
(including arrival and concluding and ending the conversation) . The interviews
with the nearest and dearest will be held by telephone and will last a halve
hour at most.
The focus groups with the target population will last ninety minutes at most.
The focus groups with the other perspectives will last 2 hours. All focus
groups will be held at central location. Travel expenses will be reimbursed.