English

Welcome

Improving the lifelong social participation of people with autism: that is the objective of Joint Effort! How do we achieve this? Through the collection, compilation, renewal and dissemination of knowledge in the field of treatment and support of people with autism. Joint Effort! is one of the two academic workshops for people with autism in the Netherlands, and aims to improve the participation in society of people with autism. Participating in society can be challenging for people with autism. The challenge for people with autism and their social environment can be especially large at times of major changes in life. For example, when starting a new school, dating, finding work, when living alone for the first time, or when seeking assistance from a new care agency.

The organizations that participate in Joint Effort! work together to ensure together further development and distribution of products in the field of support for people with autism during times of major life changes. Practical experience, scientific research, education, and policy come closer together in the academic workplace by sharing, compiling, and disseminating knowledge .

About Joint Effort!

In Joint Effort! practical experience, scientific research, education, client perspective, and policy come closer together by sharing, compiling and disseminating knowledge . A diversity of professionals and experienced specialists participate in this workshop. Joint Effort! tailors its programme together with the Academic Workshop Autism Reach Aut. ZonMw has awarded a grant for both workshops .

Knowledge of autism among professionals is fragmented. There is also insufficient coordination between sectors. This can negatively impact the diagnosis and guidance of people with autism. Particularly during transitions between life stages and / or environments (such as from home to school, or from school to work), people with autism often experience problems caused by suboptimal access to - and facilitation of - diverse professionals.

Mission

Our partnership integrates and promotes knowledge of professionals with a durable bond between sectors. The combined knowledge is made available nationwide through an ICT platform with an integrated training and exchange programme. Through collaboration between practice, research, education, policy, and clients we are aiming to optimize social participation of people with autism.

Vision

In a society where social participation is becoming increasingly important, increased participation by people with permanent disabilities like autism is a great thing. Social participation of people with autism should be optimized by providing action-oriented diagnosis and the appropriate evidence-based guidance during major transitions in life. This guidance is comes from various sectors and ensures that the person with autism is prepared for, and supported during, these life course transitions and is thus better enabled to participate in society.

For more information, please contact the executive committee of Joint Effort!.

Committee Joint Effort!

Joint Effort! is a partnership between several organizations. The daily management is provided by four professionals from Yulius and the Erasmus MC.

Ellen Hoogervorst (Chairman)
Responsibilities: overall project responsibility; final financial responsibility, coaching programme leader and coordinator

Kirstin Greaves-Lord (Programme Leader)
Responsibilities: Responsible for the quality and coordination of the working groups themselves, and their relationship with the outside world; substantive alignment of the workgroups; sparring partner for content

Barbara Brouwer (Coordinator)
Responsibilities: Responsible for the daily organization of the workshop; monitoring and progress reporting; budget control; organization of congresses; support in developing the finished product of the workgroups; access to client platform and advisory group

Laura Mukrab (Communications adviser)
Responsibilities: Support of internal and external communications; webmastering and editorial website development; development and editing of newsletters; corporate design; support in the development of final products by the working groups


Working groups

The heart of Joint Effort! is the working groups. Six main groups explore six themes that focus on the life phases around major transitions in the life of someone with autism.


Working Group on Early Detection

Implementing directive screening and diagnosis in youth health care
The early identification of autism spectrum disorders (ASD) remains inadequate in the Netherlands compared to the USA, for example. A diagnosis in the Netherlands is not usually made before the toddler period. Nevertheless, in the Netherlands we do have the necessary knowledge and experience in the field of early detection of ASD. In particular, the SOSO study in the late 1990s at the UMC Utrecht, the follow-up study (DIANE - project) at Karakter University Centre Nijmegen in that ran from 2004 until 2009, and the theses that these spawned by Dietz (2007) Whatley (2009) and Oosterling (2010) have contributed to the current pool of knowledge in the Netherlands on various aspects of ASD at an early age (early recognition, diagnosis and treatment).

Alarm signals
Dietz ea. developed eight alarms for ASD screening and a list of 14 items, the Early Screening of Autistic Traits Questionnaire (ESAT), based on current literature and independent research. Subsequently Oosterling and others were able to develop a two-stage screening model to enable employees of clinics and integrated early intervention clinics to detect young children at risk for ASD. In the Nijmegen region this model was introduced and linked to education, through interactive workshops with employees in first line care. Research showed that training in conjunction with systematic screening (such as using the ESAT) leads to earlier detection of ASD, and therefore treatment can be started earlier. There is now also increasing evidence for the need for this early treatment due to greater plasticity of the brain in early childhood, and the prevention of secondary disabilities, such as behavioral and emotional problems (Pickles, Anderson, & Lord, 2014).

Directives
Recently, partly based on the studies of Dietz and Oosterling, a new YHC directive Autism spectrum disorders has been developed by the Trimbos Institute (www.jgzrichtlijnen.nl). In this new directive, the alarm signals and the ESAT have been explicitly incorporated.

Background and Objectives - What is needed now?
We know that if there is no permanent investment in knowledge about early signs of ASD and the use of screening methods in practice, that previously achieved results will not be sustained (Short, 2014). In other words, we must continue to invest in ensuring that the knowledge of employees from YHC, and other professionals whose work brings them into contact with young children is kept current.

This working group therefore intends to facilitate implementation of the new national directive, so that earlier detection and diagnosis, and thus access to appropriate guidance can be achieved and remains anchored in the care of young children (0-6 years) and their families.

Goals
The working group Toddlers - Early Detection aims to show the way for parents and professionals if there is a suspicion of ASD. Concretely, this means facilitating and encouraging the implementation of the Directive by:
a) linking the alarms for ASD to the Van Wiechen Schedule,
b) promoting and implementing the reliable use of the Trimbos Directive, including developing an e-learning module aimed at the early detection of ASD for professionals
c) Complete (online) information for parents and professionals, including a well-informed survey of relevant agencies and websites for additional information.

Chairman
Ms. Dr. Iris Servatius-Oosterling (MH-psychologist and senior researcher in psychology at the University Centre Nijmegen). Iris is also chairman of the National Autism Network Young Children (LNAJK). The objectives of this working group will be realized in cooperation with this network, and with the Academic Collaborative Autism REACH-AUT. More information about LNAJK: www.kenniscentrum-kjp.nl/Professionals/Kennisinitiatieven

Literature
- Dietz, C. (2007). The early screening of autistic spectrum disorders. Enschede: Gildeprint
- Korte, M. de (2014), Masterthesis: A Follow-up of an Integrated Early Detection Programme for Autism Spectrum Disorders
- Berckelaer-Onnes, I.A. van, Anzion, P., Sinnema, H., Glind, G. van de (2015). NCJ Richtlijn JGZ-richtlijn Autismespectrumstoornissen. Utrecht: Trimbos Instituut
- Oosterling, I.J. (2010). Autism in Toddlers: aspects of early detection, diagnosis and intervention. Proefschrift. Enschede: Ipskamp Drukkers
- Pickles, A., Anderson, D.K. & Lord, C. (2014). Heterogenity and plasticity in the development of language: a 17-year follow-up of children referred early for possible autism. Journal of Child Psychology and Psychiatry 55(12), 1354-1362


Working Group on Early Treatment

Development of training for parents of children with autism (0-4 years)
When parents are informed that their child (may) have autism, the question arises: "What can I as a parent / teacher / caregiver etc. do to guide the development of this child as positively as possible." On the basis of evidence-based treatments and practical experience, we will develop a course for parents, supported with online examples and exercises, to kick-start the social development of children aged 0-4 years with autism.

This working group formulated starting principles for training: for whom is the training suitable, and for whom is it not. We create an inventory of effective elements from existing treatments, and compile them into a single course. We then test this course in practice and measure the results in an effectiveness study, in partnership with Leiden University.

Chairman
Lex Stockmann (Centre for Autism Leiden)


Workgroup Preparing teachers

Developing training modules for teachers in training, and practicing teachers
This working group aims to develop a training module for teachers (as part of PABO (PGCE) curricula) and for teachers already working in practice (refresher training). The purpose of this training is to enhance the knowledge and skills of teachers in primary schools, to promote the inclusion of children with autism in mainstream schools. We focus on knowledge about transitions in education (for example, from class to class ) and how these proceed in normal development; of how autism spectrum disorders may be signaled in the classroom; and skills to create suitable work for child with an autism spectrum disorder, and any additional behavioral problems in the classroom.

Principles
Following the developments in appropriate education, we try to improve the quality of education and support of children with autism at school. To this end we want teachers to learn to identify and analyze problems based on the principles of behavioral therapy. We also collect practical tips in collaboration with the National Centre KJP, and we aim to build an optimal climate in the classroom. With this module, we expect to contribute to a better quality of life through a better relationship between teacher and child / parents and an appropriate learning environment for the child.

Network
The working group consists of health care providers from different settings. Contacts with teacher training colleges, students, teachers, and school counselors are being formed. In the school year 2014-2015 we will identify the needs of the educational sector, of students and parents, of KJP / Youth Mental Health institutions, and the latest developments in appropriate / special education. We will also examine what the needs and possibilities are in teacher training.

Finally, we identify and collect, in collaboration with the National Centre KJP, all available literature on autism spectrum disorders in the classroom and practical experience for teachers. In the second half of 2015 , we will develop a concept module based on all the information gathered, which we will then test in subsequent years in practice, and adjust in response to concrete experiences and feedback.

Chairman
Annelies de Bildt (Accare)


Working Group Educational Transitions

Development of Professional Development Methodology for teachers and youth professionals in (special) primary and secondary education, to lead the guidance of young people with autism spectrum disorders and their families during access to secondary (special) education in the right direction.

The transition from primary education to secondary education is a special and exciting moment for young people and their parents. For young people with autism spectrum disorder, the transition from the small and simply-structured primary school to the large and, for them, often confusing secondary (special) school is unfortunately often problematic.

Taking the step
Many children with ASD have difficulty in anticipating and adapting to new situations. It is therefore of great importance that in (special) schools, suitable programmes are put in place which can contribute to a well prepared transition to secondary (special) education for a student with an autism spectrum disorder. This working group is working towards a professionalization methodology for teachers and youth professionals in (special) primary and secondary schools, for the guidance of adolescents with an autism spectrum disorder and their families (systemic approach: child-centered + environment focused) at the approach to the transition to secondary (special) education

This methodology based on a review of:
- Both the process and the elements that make up a good transfer from primary to secondary education;
- A description of how to engage parents and children in the transition;
- A description of how to obtain access to regional (or national) expertise if needed.

Within the framework of the Academic Collaborative Autism Joint Effort!, Keniscentrum Zorginnovatie (Rotterdam University) and its partners at the Innovation Alliance Foundation have been awarded a grant to develop a serious game for young people with autism spectrum disorder in Rotterdam schools. For more information on the game, see the website of FLOW.

Chairmen
Chris Kuiper (Horizon Health Innovation Research (Rotterdam University)) / Patricia Vuijk (Health Innovation Research (Hogeschool Rotterdam))


Working group Relationships

Research into the support needs of young people with autism in the field of building friendships and romantic relationships
This working group focuses on adolescents with autism and their contacts and relationships with peers. In particular, the working group is focused on to what extent and in what way do young people with autism need and receive support in building friendships and romantic relationships. Support around this theme for young people without autism usually takes place in education through relational and sexual education. However, for people with autism, the existing regular curriculum materials are not always suitable in content or in form.

Autism Friendliness
The Working Group maps out what knowledge and teaching materials related to sexuality and relationship education already exist in mainstream schools, and what material has been developed especially for young people with autism. The existing learning material is assessed for ‘autism friendliness in terms of content and form. The working group describes criteria that can be used in the evaluation of teaching materials for ‘autism friendliness’. For example, by paying attention to whether text and graphics are clear, concrete and unambiguous, and whether certain issues are sufficiently addressed. These may be issues that to young people without autism might be fairly obvious, such as the importance of politeness, personal hygiene, etc., but that are more complicated for young people with autism, because there are so many 'unwritten rules' which have often not been specifically explained to them.

Supplementary teaching materials
The working group then examines whether additional materials have been developed by professionals working in mental health and / or special education, for items missing items from within mainstream teaching materials. All relevant information, documentation, and materials are exchanged and collected in a survey and database. Subsequently, the working group will discuss, together with professionals and clients, whether there are issues which remain insufficiently represented, or are not yet developed into an autism-friendly format. Missing materials will be developed to suit the learning style of young people with autism. A lesson plan is also being developed for all materials. Finally, an access portal is being created to the lesson plans of all available teaching materials, including the score on the degree of autism-friendliness, and to any additionally developed material.

Chairman
Kirstin Greaves - Lord (Yulius / Erasmus MC)


Working group Access to Employment

Finding and keeping a suitable job
In young adulthood, finding and keeping a job an essential part of being able to participate in society. Many people with autism have characteristics and qualities that can be (very) valuable in the job market. Nevertheless, many (young) adults with autism are either working in unsuitable jobs, are unemployed, or are employed in an undesirable job below their level.

Wishes and needs
An unsuitable or no longer suitable job decreases the chances of success. For this reason it is necessary to pay more attention to supporting and preparing for (the finding and retaining of) paid work for young (adults) with autism. This Working Group maps out which needs and wants there are among (young) adults who are about to enter the employment market, or who are working in a less suitable position, and which questions and needs they have in terms of access to work and job retention.

In addition, the working group will identify and categorize the knowledge, networks, and initiatives that are already in place; if they are working; and what the possible gaps are. The working group is developing a guide and a WorkWeb containing advice on the route from school to paid work, including a description of methods in which mental health services, educational institutions, employment assistance, and the person with autism can integrally self-collaborate.

Chairmen
Cees Kan ( Radboud UMC) / Hanny Ebbers ( Yulius Prima Coaching )


Working group Housing

Development of a Housing Guide
Innovation and Knowledge Centre for Care(Kenniscentrum Zorginnovatie, Rotterdam University) is a partner in the Academic Collaborative Autism Joint Effort!. Mieke Cardol, Lecturer in ‘Disability Studies; Diversity in participation’ is in charge of the working group Housing: "Comfortable living is not an afterthought and not a luxury, but a necessity. Living means having a place where you feel safe, a base where you can come to rest, where you have your say and where you can receive friends and family. If you do not feel comfortable at home, then you cannot participate effectively in society." Adequate housing for people with autism not always self-evident. To clarify the requirements and to improve the realization of residential space, the working group will develop a Housing guide, that:

- Presents new and existing knowledge in a clear and accessible manner
- Describes the importance of an adequate environment for personal well-being and participation in society
- Creates an inventory of important factors for pleasant (supervised) independent living
- Presents possible solutions / alternatives for a shortage of residential places
- Is suitable for people with autism with different support needs, including those who have no professional support
- Is suitable for people with autism in various life stages and with different family compositions

The Housing Guide will also have a link with municipal policy; municipalities and housing associations are closely involved in the realization of adequate housing for people with autism. Partners in the working group Housing include PAS Netherlands, Radboud UMC, IVA Housing / Stumass / Capito, Horizon Youth Care, the Heerenloo Care Group, the Sipkema Foundation, Yulius Health Innovation and Knowledge .

Chairman
Mieke Cardol (Health Innovation Research (Rotterdam University))


Working group Care Transitions

Development of a Transition Guide for autism spectrum disorders
Psychiatric disorders such as autism do not vanish upon reaching maturity, but the specialized care for these young people terminates upon reaching the age of 18 years. These age limits cause a break in care which leads to poorer outcomes, and the failure of care. The differences in the approach, methods, and treatments of these two sectors are enormous, causing many young adults with autism to fall between two stools. There is not only an organizational separation between child and youth psychiatry and adult psychiatry, but also there are often large differences in approach, focus, and treatment. All this will hinder the continuity of care at a crucial moment in life.

Effective Interventions
In the Netherlands, the attention to this transition in care in psychiatry is still in its infancy. The experiences of this transition of young people with autism, and their parents and caregivers have not yet been thoroughly researched and we still know little about effective interventions for transition of care for autism. Therefore, our team combines the strengths of several research groups working on this theme, with the direct input from people who encounter problems with this transfer: professionals and patient representatives.

The ultimate aim of this working group is to combine practical knowledge from the field and early research results into a new standard of care (Transition Guide for autism spectrum disorders), and to develop a Toolkit consisting of practical interventions. In the coming months we will begin exploratory applied research, with minor students from Rotterdam University examining the experiences of young people with autism, and their parents and caregivers at various mental health institutions. There is also an online survey in preparation, to bring the vision of professionals into perspective. Members of our group have also actively contributed to the Symposium on Transition Psychiatry on December 12, 2014.

Chairman
AnneLoes van Staa ( Health Innovation Research (Rotterdam University))