Poster Number: SUN01-01
Effect of social support on the quality of life of
parents of children with ASD in Algeria
Authors:
Asma Achachera Smahi, Tlemcen university and association of autisme spectrum disorder, Tlemcen, Algeria
Sarah Bendiouis, Université de Tlemcen, Tlemcen, Algeria
Mouna Bendiouis, Université de Tlemcen, Tlemcen, Algeria
Fatima Borsali, Université de Tlemcen, Tlemcen, Algeria
Amine Hamhami, Université de Tlemcen, Tlemcen, Algeria
Introduction
Autism Spectrum Disorder is a syndrome that requires a total commitment from parents to their affected children, this situation can have repercussions on several areas of parental quality of life (QoL): emotional well-being, social relations, free time and hobbies, ...etc. These areas of QOL can be influenced by factors that can improve or degrade them among these factors: family and professional support . So what is the level of impact of a child's ASD on general QoL (QoL), the emotional and adaptive life of their parents? Can family and professional supports influence the QoL, the emotional and organizational well-being of Algerian parents with a child with ASD?
Methods
This study was conducted in Algeria on a sample of 47 parents of children with ASD who completed two questionnaires :the first questionnaire is the PAR -QOL(parental quality of life ) ( Raysse , 2011) that assesses the consequences of childhood disorders on general QoL , the emotional and adaptive life of parents,the second questionnaire is the social support scale of Lacharité, Moreau, M.-L., & Moreau, J (1999). Both questionnaires are adapted to the Algerian environment by us .
Results
Our results indicate that parents of children with ASD feel that their QOL is moderate. Social support influences the QOL ,the emotional well-being and the adaptive life of parents, Professional support influences parents 'QOL and their emotional well-being but the number of sources of support provided to families of children with ASD has not relation to parents' QOL and their two emotional and adaptive domains.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
The results about the level of impact of autism on parents' quality of life are consistent with the studies of Raysse (2011) and Grimm-Astruc (2010) . results concerning the effect of social support on the quality of life of parents of children with autism are consistent with international research that has shown that this factor is strongly related to the well-being of parents (Khanna, & Al, 2011), reduces their stress level (Samadi, McConkey, 2014) promotes optimism mothers (Ekas, Lickenbrock and Whitman2010) and predicts a good quality of family life (Cappe & Al, 2017).These results allow us to deduce that parents of children with ASD need both forms of support to benefit from more or less adequate life.
Keywords: Family, Quality of life, Social
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-03
Family Program: measuring the impact of participation in parents-to-parents family support meetings (FSM)
Authors:
Natalia Barrios, Brincar por un Autismo Feliz, Buenos Aires, Argentina Morillo Carina, Brincar por un Autismo Feliz, Buenos Aires, Argentina Ysrraelit Maria Celica, Brincar por un Autismo Feliz, Buenos Aires, Argentina Gotelli Marina, Brincar por un autismo feliz, Buenos Aires, Argentina
Introduction
The first Parents-to-Parents Family Support Meeting (FSM) of Fundación Brincar started in 2011, with only 8 participants. The group was attented by mothers and grandmothers of people with ASD, with monthly meetings to address different aspects of autism and its impact on families.Since then, they have significantly expanded, with currently 10 groups and 495 participants. The objective of this Project is to evaluate the impact and level of satisfaction of families of people with ASD in attending FSMs of Fundacion Brincar of Argentina
Methods
A cross-sectional study was used. A survey was sent to all participants of FSMs with autocomplete answers. Participants no longer attending, were also included. An Anonymous Response setting was implemented, as well as data codification to avoid answer repetition
Results
Surveys were emailed to 495 participants of FSM. The average age of participants is 48,5 years. A total of 71,4% are mothers or fathers of children with ASD, while 27,4% are grandmothers/fathers and 1,7% aunts/uncles. The average age of the family member with ASD is 8,4 years. As far as impact is concerned, 70% indicated a very positive level, 60% improved their family relation and the majority mentioned participation in FSMs improved their social inclusion. A total of 97,8% will continue attending, and 100% recommends FSM to other families facing similar situations.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
Bringing up a child with autism can be challenging for parents and family members in general. This reports greater levels of stress than parents of children with a typical development or with other developmental disorders. Studies have also indicated more cases of depression and a lower quality of life in comparison with parents with other developmental difficulties, physical handicap or cronical health conditions. The level of stress is associated with the intervention on their child, their quality of life during the intervention and of the family in general. Parents-to-parents family support meetings seem to improve social inclusion, reduce stigmatization and enhance access to health and educational ressources. Monthly attendance of FSMs had a highly significative impact in the personal and family life, as well as the relation with the family member with ASD, in the majority of cases. Therefore, we consider FSM as a valid intervention for families of people with ASD, as well as an accesible ressource in a low income country like Argentina.
Keywords: Family, Organisation, Self advocacy
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-05
Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder Across Europe: Family and Professional Perspectives
Authors:
Álvaro Bejarano, University of Salamanca, Salamanca, Spain
Canal-Bedia Ricardo, University of Salamanca, Salamanca, Spain Magán-Maganto María, University of Salamanca, Salamanca, Spain Fernández-Álvarez Clara, University of Salamanca, Salamanca, Spain Cilleros-Martín Ma Victoria, University of Salamanca, Salamanca, Spain Sánchez-Gómez Ma Cruz, University of Salamanca, Salamanca, Spain García-Primo Patricia, Johannes Kepler University, Linz, Austria
Sweeney Mary Rose, School of Nursing and Human Sciences, Dublín, Ireland Andrew Boilson, Dublin City University, Dublin, Ireland
García-Pérez Lidia, Fundación Canaria de Investigación Sanitaria (FUNCANIS), San Cristóbal de La Laguna, Spain
Herbert Roeyers, , Gent, Belgium
Van Der Paelt Sara, Ghent University, Gante, Belgium
Diana Schendel, Aarhus University, Aarhus, Denmark Warberg Christine, Aarhus University, Aarhus, Denmark Cramer Susanne, Aarhus University, Aarhus, Denmark Narzisi Antonio, University of Pisa, Pisa, Italy
Muratori Filippo, University of Pisa, Pisa, Italy
Maria Luisa Scattoni, Research Coordination and Support Service, Istituto Superiore di Sanità, Rome, Italy
Irma Moilanen, University of Oulu, Oulu, Finland
Anneli Yliherva, Child Psychiatry, University of Oulu, Child Language Research Center, University of Oulu, Oulu, Finland
Evald Saemundsen, State Diagnostic and Counselling Centre, Kópavogur, Iceland Jónsdóttir Sigrídur Lóa, State Diagnostic and Counselling Centre, Kópavogur, Iceland Magdalena Budisteanu, 'Victor Babes' National Institute of Pathology, Bucarest, Romania Arghir Aurora, Victor Babes - National Institute of Pathology, Bucarest, Romania
Mihaela Papuc Sorina, Victor Babes - National Institute of Pathology, Bucarest, Romania Astrid Vicente, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal
Celia Rasga, Instituto Nacional de Saúde Doutor Ricardo Jorge, Lisbon, Portugal Bernadette Rogé, University of Toulouse 2, Toulouse, France
Quentin Guillon, University of Toulouse 2, Toulouse, France
Baduel Sophie, Université Toulouse Jean-Jaurès, Toulouse, France
Kafka Johanna Xenia, Medical University of Vienna, Viena, Austria
12th Autism-Europe International Congress – September 13-15th 2019
Luise Poustka, Medical University of Vienna, Vienna, Austria Kothgassner Oswald, University Medical Centre Göttingen, Viena, Austria Rafal Kawa, University of Warsaw, Varsavia, Poland
Pisula, Ewa, University of Warsaw, Varsovia, Poland
Sellers Tracey, National Autistic Society, Londres, United Kingdom Manuel Posada, Institute of Rare Diseases Research, ISCII, Madrid, Spain
Introduction
The perspectives of parents and professionals towards detection and diagnosis of Autism Spectrum Disorder (ASD) play a fundamental role in guiding the improvement of services, but both viewpoints have rarely been considered jointly. The aim of this study is to understand the opinions of the autism community (families and professionals) on detection, diagnosis, and early intervention services for young children with ASD.
Methods
Twenty focus groups were carried out in 10 European countries within the framework of the Autism Spectrum Disorders in the European Union (ASDEU) network, leading to the development of two independent surveys that were distributed online among families with a child with ASD and professionals who reported working or have worked with same population in the same period of time or in recent years (N = 2,032). Questions aimed to collect specific data about detection, diagnosis and intervention of young children with ASD (level of satisfaction, age of access, etc). Multinomial regression analyses were conducted to compare family and professional’ groups.
Results
Overall, 60.2% of respondents reported positive satisfaction with detection, diagnosis, and intervention services, although parents scored significantly more negatively (4.64) than professionals (4.94). Families reported higher ages for their children at the time of detection and consequently of access to diagnostic services, compared to professionals. The European regions with lower per capita income reported more frequent delays to service access, and lower levels of satisfaction than regions with a higher one.
Discussion
Although, overall, families and professionals express satisfaction with detection, diagnostic and intervention services for children with ASD in their communities, differences were seen between groups. Families reported that professionals should take into account their concerns and provide them opportunities to actively participate throughout the detection, diagnostic and intervention process. Greater satisfaction of families and professionals was associated with a lower age of detection and diagnosis, supporting the goal of implementation screening programs and initiating intervention as soon as possible. Service policies and future research should focus on reducing delays in access to services, potentially with specific early detection programs, and to promote closer collaboration between professionals and families to improve satisfaction and wellbeing of families and children.
Keywords: Family, Professional, Services
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-06
I Am Different Because I Have ASD Sibling: A Qualitative Study on Siblings of ASD Child in Lithuania
Authors:
Ruta Buivydaite, University of Oxford, Oxford, United Kingdom Charles Newton, University of Oxford, Oxford, United Kingdom
Introduction
Introduction: The relationship among the siblings is the longest lasting relationship among humans (Beyer, 2009). Sibling studies are extensively researched area (Beyer, 2009). However, there is still less known about the relationship among siblings when one of them has ASD and the existing findings are mixed (Benderix & Sivberg, 2007, Mascha & Boucher, 2006, Orsmond & Seltzer, 2007). Objectives: This was a novel study that aimed to look at the siblings’ experiences in growing up with ASD sibling in Lithuania. Especially, to capture the different types of experiences: struggles and blessings through the eyes to the sibling. We also considered age, gender and ASD severity which are usually not considered in previous studies.
Methods
Methods: We have used qualitative methods to access more in-depth experiences of the participant’s. We used semi-structured interviews. Total of 15 siblings agreed to participate, age range from 11-24 years, from 13 families. The data was than transcribed and analysed using NVIVO 12 software. We applied grounded theory analytic framework to understand the findings.
Results
Results: Lithuanian siblings reported stress due to responsibilities given to them. Participants were obliged to take care of their ASD sibling despite the birth order (being younger sibling) or age difference (being 10 years apart). They have shared about challenges of having ASD sibling such as behavioural problems of ASD, feeling “secondary child”, experiences of stigma and embarrassment of their ASD sibling. This was reported by siblings who had brother/sister with severe symptoms of ASD. Despite of all the difficulties siblings reflected on positive aspects like being more understanding and able to cope better in challenging situations compared to their friends.
Discussion
Discussion: The current study highlighted the impact of ASD on sibling’s relationships. In addition, it informed about existing family dynamics from the sibling’s point of view. While it is not possible to mediate sibling’s age, gender or severity of ASD, there are strategies that can be employed to facilitate more positive relationships between sibling participants and ASD sibling and family as a whole.
Keywords: Childhood, Family, Mental health
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-07
Having a Second Child, when your first has Autism:
A qualitative study of parental experiences
Authors:
Dominique Cleary, Telethon Kids Institute, Subiaco, Australia
Murray Maybery, University of Western Australia, Crawley, Australia Andrew Whitehouse, Telethon Kids Institute, Subiaco, Australia
Kiah Evans, Telethon Kids Institute and Curtin University, Subiaco, Australia
Introduction
Around 20% of infants who have an older sibling with Autism Spectrum Disorder (ASD) develop ASD themselves (Ozonoff et al., 2011), and a further 20–30% develop broader developmental difficulties (Messinger et al., 2013). It is known that the diagnosis of a child with ASD has impacts on family functioning, including family planning (Navot et.al, 2016). However, research has yet to explore the lived experience of parents having a second child when they already have a child diagnosed with ASD. This study sought to better understand the impact of this familial risk on parents, and the experiences of parents of a child diagnosed with ASD around the conception, pregnancy and early development of a subsequent child.
Methods
The current study involved in-depth interviews with (1) parents of a child diagnosed with ASD, who have a subsequent child (with or without ASD), and (2) parents of two typically developing children. Current recruitment of 8 parents in each group meet thematic saturation, and data analysis is currently being finalised. Interviews with parents involved a set of open-ended questions developed to explore parental experiences around the pregnancy and early developmental periods of the subsequent child. A minimal number of broad, data-generating questions were asked as recommended in phenomenology (e.g. Brod, Tesler, & Christensen, 2009), allowing participants to speak about the experiences that were most salient to them. Interviews lasted between 1-1.5 hours and were transcribed verbatim. Data analysis has been concurrent with data collection, and involves a thematic analysis of the data.
Results
Preliminary analyses have found three main themes. The first of these focuses on parents’ experiences of ‘uncertainty’, exploring parents guilt and stress over the potential of subsequent children being diagnosed with ASD, alongside positivity for any future children. The second of these focuses on ‘balancing roles’, exploring the impact of a diagnosis on the management of a family during pregnancy and with a newborn. The third theme ‘getting through’ explores parents’ methods of supporting their children and finding support for themselves. These themes will be contrasted with the control group.
Discussion
Implications of identifying the unique experiences of parents around the pregnancy and early development of a subsequent child when the first has ASD include the identification of psycho-educational focuses and resources that would be important for future parents.
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-08
Supporting families with young children with autism: Evaluation of a new parent-directed and home-based early intervention program
Authors:
Ragna Cordes, Institute for Research in Autism, Bremen, Germany Hermann Cordes, Institute for Research in Autism, Bremen, Germany Nicole Schmidt, Institute for Research in Autism, Bremen, Germany Marevna Zipfinger, Institute for Research in Autism, Brmen, Germany
Introduction
The efficacy of a special early intensive behavioural intervention program is evaluated. The stated aim of this program is to empower parents to create effective learning and interactive situations in daily life with their child. They are also trained to manage difficult behaviour and to stimulate their child’s development.
Methods
The early intervention program is a short-term program (8 months), highly intensive (30h / week), home-based, parent-focused and based on behaviour modification techniques. 11 children with autism (3-5 years old) and their families participated in this project between 2014 and 2017. Data about changes in autistic symptoms measured using ADOS-2, ADI-R, improvements in developmental age (PEP-R), changes in intelligence (SON-R) and in daily problem behaviour (HSQ) were collected at three times: before the waiting period (t1), after the waiting period (8 months) (t2) and after the early intervention program (8 months) (t3). Quality of mother-child interaction was evaluated using video-records of interactional situations. The changes in the different areas during the waiting period (t1/t2) are compared to the changes during the training period (t2/t3).
Results
There was a significant reduction in autistic symptoms and significant increases in developmental age and intelligence for the children after intervention. The problem behaviour decreased significantly. Mother-child interaction improved: Mothers were able to stay in a better positive interaction with their child and to keep their child’s attention. Stereotyped behaviour was reduced and the children showed more joint attention behaviour. Mother-child interaction was more reciprocal after the training. In comparison there was no significant change in these areas after the waiting period.
Discussion
The described early intervention program could be proved to be highly effective for young children with autism and their families. Possibilities to implement this new program in the country are discussed.
Keywords: Infant, Intervention, Learning
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-09
Do you know me? Caring for children with Autism Spectrum Disorder and Intellectual Disabilities in hospital
Authors:
Emily Cull, Royal Children’s Hospital Melbourne, Melbourne, Australia
Introduction
For children with Autism Spectrum Disorder, hospital is stressful enough. Add to this a clinician who doesn’t know how to communicate with them or understand what their behaviours mean. What are the chances of a positive experience? At the Royal Children’s Hospital Melbourne there was no standard way to document a behaviour or communication plan. These patients were often having traumatising experiences, with safety breaches sometimes occurring for both staff and patients. Code Grey’s (security and clinical team responding to aggression) were called to help support these patients and entire areas of the hospital were shut down to safely care for single patients. How could we improve experiences for patients with ASD?
Methods
We had a multidisciplinary team of nurses, doctors, allied health and parents to gain knowledge and different perspective from all stakeholders. We developed a tool called the Behaviour and Communication Profile (B & C Profile), which covered areas such as communication, behaviours of concern and sensory needs. This was piloted on one ward over 4 months. Education sessions were run to inform staff on how to use the tool. Parents were surveyed on how the tool impacted their experience and for any feedback on the tool.
Results
During the pilot of the tool, the number of Code Grey’s and beds blocked decreased by 100%. The implementation of the B&C Profile cannot claim all of the credit for this statistic, as there are a number of factors influencing Code Grey’s and bed blocks, however anecdotally staff and parents felt that the tool contributed to improved experiences. 89% of parents felt the B & C Profile helped staff to understand their child’s needs (the other 11% stated N/A) and 95% of parents felt the profile helped improve the staff’s communication with their child (the other 5% stated N/A). Staff awareness and knowledge of the resources available for this patient cohort increased.
Discussion
The results show that planning in advance and individualising a plan leads to a more positive and smoother experience for everyone. Feedback was positive and encouraging from parents all the way up to hospital executive. One limitation was the fact that the tool was paper based in an electronic environment. Feedback from all parties suggested the tool should be built into the Electronic Medical Record (EMR), which is happening as part of a future project.
Keywords: Challenging Behaviour, Childhood, Communication
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-10
Acknowledging post-traumatic stress symptoms in parents of individuals with Autism Spectrum Disorder and providing sufficient support
Authors:
Renee Dela Cruz, Connect and Relate for Autism Inc, Drouin, Australia
Introduction
Autism spectrum disorder is a complex neurodevelopmental condition that has a profound impact on the natural course of parenting. Pervasive exposure to traumatic events that are commonly associated with the overwhelming care needs of individuals diagnosed on the spectrum can significantly elevate the risk of post-traumatic stress symptoms in parents. From the point of diagnosis, parents can experience varying degrees of grief and loss, isolation, limited parenting efficacy, insufficient support and financial stress which can significantly impact parenting capacity. While some elements of parental stress can be ameliorated through early screening and sufficient psychological support to empower parenting, for some families there is an overabundance of behavioural presentations that result in significant parental sleep deprivation, witnessing of self-harm, fear for own safety or safety of siblings, and a constant state of hyper-vigilance which elevates the risk of post- traumatic stress disorder (PTSD). This paper explores the frequency and correlation of parent rated depression, anxiety and stress symptoms, the degree of psychological impact/distress experienced by parents, the development of PTSD in a portion of parents and the need for parenting based early interventions that focus on supporting and empowering parents.
Methods
Psychometrically sound self-report questionnaires were implemented pre-test and post-test with parents of individuals with autism to explore the rate of depression, anxiety and stress symptoms, level of caregiver burden, quality of life and the occurrence of post-traumatic stress symptoms. Parents were provided with intensive parent focused intervention that included psychoeducation and focus on the guided participation relationship. A repeated- measures statistical analysis was implemented to assess significant long-term impacts on parenting.
Results
This study indicated that there is a significant need for clinicians to recognise the psychological impact of autism spectrum disorders on parenting capacity. Early screening of post-traumatic stress symptoms must be considered by clinicians and parents must be provided with significant support to ameliorate parent stress. Parent training was critical to empowering parenting capacity.
Discussion
These findings document a need to recognize the degree of psychological impact that autism spectrum disorders have on parenting and identifies key protective factors to decrease parental stress.
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-11
How to fall in love with autism
Authors:
Asia Dimitrova, London, United Kingdom
Introduction
New investigations demonstrate that autistic brain is interconnected and works in a different way to the neurotypical. But is it possible that not only the brain but also the whole body is connected differently? How does it affects their life? How does autistic perceptions translate to a not-autistic person?A challenge for a neurotypical researcher is to comprehend the differences, lacking personal experience of the sensations of processing information with different parts of the brain.
Methods
Born on the spectrum, my method is finding words that can translate what a child perceives and lives through. I teach parents a philosophy that helps them create a profound connection specific to their child. My method focuses on the autistic talent, optimizing environment and carers’ perceptions rather than solely rely on training autistic children to conform to social norms and expectations. The change starts from parents who are open to learn how to manage their own personal space and emotional balance. I also introduce them of some unconventional concepts such as:• Emotional Skin Deficiency (ESD) - challenges and benefits• Autistic perceptions - physical, visual, sound, time, etc• Emotional Hygiene for everyone• Multi-Level Communication• Nutritional adjustments in support of the internal autistic structure
Results
My method is not a therapy but a philosophy. The outcomes achieved are inspiring and promising even for the most challenging cases. Working as a consultant for families and young adults I could witness the positive changes first-hand. Looking at the world though their child’s eyes resulted to be the turning point of a shift in the parents’ paradigm leading them to practical tools to manage daily challenges which evolved into overall improvement of everyone’s wellbeing, communications and increased willingness to learn for both parties.
Discussion
We, as society, need to re-define what an “intervention” means. For autism is a talent and I work to help society to see it as such. Interventions could focus on harnessing our talents and improving the stereotype and communities’ mindset learning from both worlds. My call for action is to create adequete educational programmes introducing the neurotypical mind to a spectrum of enriching possibilities, new models of communication and the concepts mentioned above, working towards recognising autistic people as brilliant and much needed members of society.
Keywords: Alternative Communications, Behaviour, Stress
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-12
Co-parenting among parents of children with Autism Spectrum Disorder: A systematic review of the literature
Authors:
Naomi Downes, Université Paris Descartes - Laboratoire de Psychopathologie et Processus de Santé (LPPS - EA4057), Paris, France
Introduction
Research among the general population has shown that a high quality co-parenting relationship is an important factor for the child’s development and the couple’s relationship. Yet, empirical studies in the field of autism have mostly focused on the couple’s romantic relationship. Thus, it is important to go beyond the romantic relationship and understand the co-parenting relationship as a separate concept in the domain of autism, especially as parents of a child with ASD are confronted on a daily basis with very different and more stressful parenting demands. The objective of this study was to be the first systematic review to identify the factors associated with co-parenting a child with ASD.
Methods
This systematic review was conducted according to the PRISMA statement. The relevant research was screened in order to conserve quantitative and qualitative articles in English or French language. Due to a certain confusion in the literature concerning the concepts of co- parenting and the couple’s romantic relationship, studies were selected if they had at least one specific assessment of co-parenting or one of its dimensions. Overall, twelve databases were searched and nine articles met the criteria for inclusion after screening.
Results
This review highlights the limited number of studies focusing on co-parenting in the domain of autism as well as their heterogeneous methodologies. Despite these limits, the findings suggest that certain factors such as parental stress, satisfaction with the division of childcare-related labour, and autism symptom severity are related to co-parenting a child with autism spectrum disorder.
Discussion
This study emphasizes the need for further research to assess the factors of risk and protection related to co-parenting a child with ASD, as well as how the co-parenting relationship affects the child with ASD throughout different stages of development. Future researchers are advised to use consistent terminology, measurements, and include data from each parent in the analysis. Such research would support practitioners in their work on the co-parenting relationship, which could ultimately prove to have a beneficial effect on their romantic relationship given the bidirectional link between these two constructs. Moreover, parents may be more willing to work with practitioners on their co-parenting relationship in a first instance rather than their marital difficulties.
Keywords: Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-15
Music Therapy in Autistic children - How do parents
think it helped?
Authors:
Marta Ezequiel, Hospital Prof Dr Fernando Fonseca, Carnaxide, Portugal
Joana Matias, Department of Paediatrics, Centro de Desenvolvimento da Criança, Almada, Portugal
Flora Garcia, Universidade Lusófona Lisboa, Almada, Portugal
Anabela Farias, Department of Paediatrics, Centro de Desenvolvimento da Criança, Almada, Portugal
Ana Duarte, Department of Paediatrics, Centro de Desenvolvimento da Criança, Almada, Portugal
Lurdes Ventosa, Department of Paediatrics, Centro de Desenvolvimento da Criança, Almada, Portugal
Luísa Rocha, Department of Paediatrics, Centro de Desenvolvimento da Criança, Almada, Portugal
Introduction
It is well established that music therapy may facilitate skills in areas typically affected by autism spectrum disorders (ASD) like social interaction and communication, using musical experiences and the relationships that develop through them. The aim of this study is to evaluate the positive effects of improvisational music therapy, through parents’ perception, in these children.
Methods
This is a prospective descriptive study involving a group of 8 children aged 2-4 years old, diagnosed with ASD accordingly to Diagnostic and Statistical Manual of Mental Disorders (DSM-V), followed at a Neurodevelopment Clinic of a district hospital in Portugal, that started weekly music therapy in January 2019. A questionnaire was applied to the parents at the beginning of the therapy and will be applied 6 months after intervention.
Results
The authors hope to find that in the parents perspective, music therapy helps children with ASD to improve their skills in social interaction, verbal communication, initiating behaviour and social-emotional reciprocity.
Discussion
Despite the widely reported positive impact of Music Therapy in children with ASD, there are no objective tools to assess the effects of this specific therapy. The necessity of standardized models of assessment in Music Therapy is urgent and needed in the near future.
Keywords: Alternative Communications, Assessment, Behaviour
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-16
Transition from family living to independent living
Authors:
Cathy Forbes, Kongsberg, Norway
Introduction
Moving from family living to independent living is a significant transition for any individual and their family. In an ideal world, an individual approach would always be used. For individuals with high dependency needs this is even more important, as understanding one’s personality, skill-set and interests are key elements to ensure a high quality of life.
Methods
When our daughter was still in high school, we started to think about her transition to independent living. We elected to look at alternative approaches. What living arrangement would be best, taking into consideration our daughter’s strengths and weaknesses, and likes and dislikes. It had to work for us and our daughter, while taking into consideration the availability of support services.
Results
The process of moving out, and creating a home for our daughter has been a journey of questions and learning:
When is the best time for your child to move out?
What are our options; and what are the implications of each option?
-Are government funded support services available if one does not live in government housing?
-What are the benefits of living alone or together with others?
-Will living with others impact one’s services?
-Financial limitations?
-Impact on parents, siblings and city officials?
-Location, and the proximity to arenas of community interaction.
What constitutes a high quality of life?
-How do you define quality of life?
-How do we ensure that our daughter's wants and needs are governing, not what we as parents want for our child?
-Is there stability in her life?
-Is she happy?
What constitutes good quality of service?
-Does she have a strong support group?
-Do caregivers receive proper training and follow-up?
-Are we doing everything we can to retain caregivers?
And what would our daughter want?
We would like to share our experiences and learnings from this process.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
Our daughter has been living in her own apartment with support staff for over 3 years. We started this process in hope to give her long-term financial independence. She has gotten so much more. We attribute her high quality of life to her living arrangement, a home structured for her unique needs. For the family there is a high level of involvement with the caregivers and service providers. Today, this is the correct choice for everyone. In the future that may change. The journey is not over, it is a continual assessment of her quality of life and how her living arrangement impacts her network.
Keywords: Community based, Inclusion, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-17
We Will Survive. Psychological competence and non-technical skills for professionals caring for children with autism
Authors:
Fabio Franciosi, Aslsudest Toscana, Livorno, Italy
Introduction
Supporting people in the autism spectrum is both a beautiful and difficult task for anyone. The psychological impact of caregiving on professionals is still unesplored, even if we experience its effects in daily practice. As empirically verified by the most recent research (Rogers, 2018), the specific model followed by caregivers seems no longer relevant to their preparation and quality of their actions, each one come from the mind of the adult who conceives it, so the expert is a co-protagonist, not simply a technical performer. Therefore, he has the responsibility of taking care of his mind health, going beyond technical skills and knowing that the personal attitudes play an essential role on the efficacy of care actions. The purpose of our research is to investigate the correlation between efficacy of interventions and non-technical skills of professionals.
Methods
Seven years ago we started to work with educators and health professionals using a new training program. The Non-technical Skills Training addresses three dimensions of skills:1)esecutive 2)intrapersonal(e.g. regulating emotions),3)interpersonal (e.g. communicating with parents and colleagues, reading the interactive dynamics). The program provides the presence of a Supervision time that work on personal meanings and emotional difficulties, supporting the caregiver in noticing moment-by-moment effects/affects moved from the meeting with child and his automatic reactions. The goal of the program is to define a Personal Functional Profile (PFP), that goes around nine psychological dimensions describing the individual prevailing attitudes. A multimodal approach based on self-report and objective measures is used, e.g. the Resilience Scale (Connor et al., 2003), PANAS (Watson et.al., 1988), FEFS(Gross, John, 1998).
Results
The first available data confirm that the three programs help professionals to feel more resilient during critical moments, confident with parents compliance ability, safer in understanding how to proceed. Above all, they report an increase in vitality and the feeling of being more able and emotionally congruent to take care of children,who also seem to exhibit fewer dysregulation episodes.
Discussion
Finally we can say that caregiver’s subjectivity and non-technical skills are still a shadow zone in autism training courses, so we have to work harder in this direction, because every experience of people with autism seems to be closely linked to the quality of the actions and health of caregivers mind.
Keywords: Care, Community based, Professional
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-18
MindfulTEA. An specific Mindfulness based program for people with ASD, their parents and support proffesionals
Authors:
Helena Gandía, Confederación Autismo FESPAU. Universidad Autónoma de Madrid, Madrid, Spain
Marian González, Centro BalanCe de Psicología & Mindfulness. Universidad Europea del Atlántico, Santander, Spain
Mónica Valero, VolandoCometas. Universidad Jaume I de Castellón, Bétera, Spain Almudena Vázquez, Mindfulness Badajoz, Badajoz, Spain
María José Navarro, AhoraYo, Valdepeñas, Spain
Jose Manuel Delvalle, Psiqueon., Huelva, Spain
Jorge García, SerAyurveda, Valladolid, Spain
Javier González, Centro BalanCe de Psicología & Mindfulness, Santander, Spain
Carmen Nieto, Universidad Autónoma de Madrid, Madrid, Spain
Introduction
There are three main aspects in the literature about wellbeing in people with Autism Spectrum Disorders (ASD) and their families and support professionals: the presence of behaviour problems and its impact in people with ASD and their families (Lecavalier et al., 2006), high levels of stress, anxiety and depression among families (Hayes, & Watson, 2013, Olsson, & Hwang, 2001) and high levels of professional burnout (Zarafshan et al., 2013). In this way, one emerging line is the implementation of Mindfulness Based Interventions (MBI) which has shown effective to reduce anxiety, depression, rumination and aggressive behaviour in people with ASD (Singh et al., 2011, Spek et al., 2013) as well as reducing stress and increasing the perception of positive aspects of caregiving and satisfaction with parenting skills in their parents (Ferraoli & Harris, 2013, Kowalkoski, 2012, Singh, 2014, Singh et al., 2006). However, there are some important points which haven’t been consider: 1) there is no MBI set applied to people with low-functioning autism, 2) MBI don’t consider aspects of Self Compassion even tough has been shown to be important in this population (Neff, & Faso, 2015) and 3) there is no studies about effectiveness of MBI in reduction of professional burnout of workers who support people with ASD.
Methods
We have designed and implemented a specific MBI protocol for people with ASD and their families and support professionals with four innovations: 1) a main Self-Compassion component for parents, 2) consideration of possible Broad Autism Phenotype in parents, 3) a specific designed for people with low-functioning autism and 4) implementation of support professionals. The intervention is being carried out with 100 parents, 50 professionals and 25 adults with low- functioning ASD. This is a pre-post study. FFMQ, SCS, PSI-SF, HADS, MBI, PROQL, CARS and BPI are being administered.
12th Autism-Europe International Congress – September 13-15th 2019
Results
We expect to show evidence of the relationship between Self Compassion and Behavior Problems as well as to discover the effects of an 8 week MBI protocol in parents, professionals and people with low functioning ASD.
Discussion
MBI have shown effectiveness in different fields related with personal wellbeing in people with ASD and their families. We want to provide a new contribution in the adaptation of these kinds of programs to the specific characteristic of people with ASD and their families and support professionals in order to increase their personal wellbeing.
Keywords: Emotional Life, Family, Stress
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-20
How Do Occupational Therapists Care For Children
With Autism? A review of the literature
Authors:
Thaynara Kelly Guerra, FEPECS, Brasilia, Brazil Vagner Dos Santos, Brasilia, Brazil
Introduction
Autism was for the first time described by Leo Kaner in the 40s, which now affects about 70 million people, affecting social relations and the performance of occupational roles, which are a very important work of several health professionals in order to reduce barriers and improve those individuals skills, bringing further autonomy and independence, for this population. This work aims to identify the interventions through literature databases of occupational therapy professionals and their results.
Methods
The article searches and their review ran between July and December 2015 through the Virtual Health Library (VHL). A research was conducted in MEDLINE, SciELO, LILACS and Cochrane, using occupational therapy and autism reporters. The initial search did not limit publications for the year. Subsequently, the period with the highest number of publications was selected,so the publications between January 2011 and December 2013 (3 full years) were selected, which corresponds to the period with the highest number of publications.
Results
From the analysis of the material found was possible to include 12 articles in this work. They included elements where only intervention was reported performed by an occupational therapist.
Discussion
The major operation occupational therapists axis is the sensory interventions supported by Jane Ayres’s theory of sensory integration. These and other interventions have improved occupational performance of autistic children, changing them to more participatory in their daily living activities.
Keywords: Intervention, Program, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-21
A Mixed-method Examination of the Impact of
Experienced Stigma on Social Outcomes
Authors:
Ashley Harrison, University of Georgia, Athens, United States Alex Marion, University of Georgia, Athens, United States Margaret Naughton, University of Georgia, Athens, United States Kathryn Bangs, University of Georgia, Athens, United States
Introduction
Research demonstrates the negative impact of stigma experienced by parents of children with autism spectrum disorder (ASD, Gray, 2002, Farrugia, 2009, Mak & Kwok, 2010), however, less studies have investigated the consequences stigma has on the diagnosed individual. Exploring how stigma affects the social outcomes of young adults has increasing importance for helping to best support these individuals. Using a mixed methods approach, the current study aimed to examine how stigma relates to social outcomes.
Methods
For the quantitative portion of the study, 31 adults diagnosed with ASD (mean age = 26.62 years) completed several rating scales assessing social satisfaction (Cyranowski, et al., 2013), social self-efficacy (Sherer et al., 1982), self-esteem (Dagnan & Sandhu, 1999), and adaptive functioning (ABAS II, Harrison & Oakland, 2003). Participants also completed an edited version of the Stigma Scale (King, 2007), a 28-item measure that assesses perceived and experienced stigma. Thus far, qualitative data has been collected from seven participants using a semi-structured interview and will continue until achieving saturation (Morse et al., 2002).
Results
Quantitative results revealed individuals with ASD that have experienced higher stigma also report significantly lower social satisfaction (r = -.60, p < .001), lower self-efficacy (r = .51, p = .003), and lower adaptive functioning (r = .42, p = .02), but found no relation between stigma and self-esteem.Preliminary qualitative results show individuals with ASD experience a widespread lack of understanding of ASD in the community. Further, interviews suggest this limited understanding contributes to experienced stigma related to self-esteem, self- efficacy, and social satisfaction. These data will be examined in greater detail using applied thematic content analysis (Guest et al., 2012).
Discussion
Using mixed-methods, the current study demonstrates the relation between negative social outcomes and experienced stigma among adults with ASD. Qualitative results directly tie this stigma experience to perceived ASD knowledge deficits among the community at large. To help minimize the negative consequence of stigma for individuals with ASD, an understanding of how these experiences impact quality of life can help with the development interventions to support individuals with ASD during the transition to adulthood and to help reduce stigmatizing beliefs and behaviors on a broader community scale.
Keywords: Adult, Environment, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-22
A 'Quality of Life' approach to changing the way we support young people with autism and their families:findings from a specialist school
Authors:
Kiran Hingorani, Swalcliffe Park School, Banbury, United Kingdom Paul Catherall, Swalcliffe Park School, Banbury, United Kingdom
Introduction
X is a specialist day and boarding school for boys, aged 10 to 19 who are on the autism spectrum. The school wanted to determine whether student and family Quality of Life (QoL) information could contribute to improving student outcomes and to guiding the support it provides for their families.
Methods
Data sets from the parent and self-report versions of the Quality of Life in Autism (QoLA) questionnaire (Eapen, 2014) were collected on three occasions over one school year. The QoLA has two parts. Part A provides insight into various aspects of the students’ and parents’ QoL such as their physical, psychological and emotional well-being. Part B data reveals which characteristics of their sons’ autism (e.g. anxiety, sensory issues, behaviour) the parents are finding most problematic, which can then be compared to the students’ own views on this.
Results
Analysis of Part A data over time revealed that, as a group, students (n=30) maintained positive feelings about their physical, psychological and emotional well-being. Parent responses (n=17) showed much more variability but the majority reported improvements over time, in terms of feeling happier, less stressed and more satisfied with their family life. Part B data analysis identified some notable discrepancies in how students perceived aspects of their autism compared to their parents. For example, 83% of parents viewed independence in daily living tasks as being highly problematic compared to only 17% of students. Other discrepancies were related to sensory issues and managing anxiety.
Discussion
QoL information has helped the school to re-conceptualise and change the way it plans outcomes for students and the way it offers support to families.Individual student QoLA data has been used to set more meaningful and personally relevant targets for them in the areas of communication, self-management and independence. Group data from parents has identified which aspects of autism they perceive to be most problematic and this has led to precisely targeted support for them in terms of managing anxiety, dealing with sensory issues and developing independence in daily living activities. The school has developed a network for sharing its QoL framework with other schools who are interested in taking a quality of life approach to their work.
Keywords: Education, Family, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-23
Evaluation of a nationally available service for supporting autistic people and their families with the transition to adulthood
Authors:
Holly Judge, The National Autistic Society, London, United Kingdom
Introduction
Established in 2013, the service is a nationwide autism-specific advocacy service supporting young people and their families with the transition from education to adult life. Funded by ‘Transforming Lives’ and delivered by extensively trained home based volunteers who have provided information, advice and guidance to over 1300 families. Being a unique service which fills a gap in provision, the aim of the project was to pilot an internal evaluation process where valid evidence of 1) performance through immediate outcomes i.e.: monthly Key Performance Indicators (KPI) and 2) impact through longer term outcomes i.e.: qualitative case studies can be collected and inform service design.
Methods
A Theory of Change (ToC) was developed to identify immediate and long term outcomes, key elements of the ToC were used to inform the structure of questionnaire tools and topic guides, a board of external analysts advised on an evaluation strategy, a steering group of service managers and fieldwork volunteers was consulted on data collection tools, consent to participate in case studies was obtained via permissions on mandatory KPI surveys, telephone interviews (n=16) carried out by fieldwork volunteers for case studies six months after service delivery, KPI data (n=34) summarised for financial year 2017-2018, thematic analysis of qualitative data obtained from interviews.
Results
Main themes illustrate how autism-specific knowledge and understanding enables parents to be better informed and confident in supporting their child with transition. Most parents yielded desired outcomes by taking direct action, advocating for support from educational institutions or organisations. Others experienced more indirect benefits by being more emotionally prepared for transition and improved family relationships. Parents overall wouldn’t know what to do alternatively regarding support and many felt that other services wouldn’t have as big an impact meeting their specific needs. The service has been accessed by families from a wide range of socio-economic backgrounds but has been a proven lifeline for parents who struggle to cope financially.
Discussion
The combination of mandatory post service data collection (KPIs) and participation in case studies six months after delivery has provided rich evidence demonstrating performance and impact. Such evidence will be used to inform future proposals to maintain quality, funding and increase reach.
Keywords: Services, Teenage, Transitions
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-24
NAVIGATOR ACT for parents to children of Autism
Spectrum Disorders (ASD) and other disabilities
Authors:
Tiina Holmberg Bergman, Karolinska Institute, Stockholm, Sweden Tatja Hirvikoski, Karolinska Institutet, Stockholm, Sweden
Bella Berg, Stockholm disability services, Stockholm, Sweden
Introduction
Parenting a child with autism is a long-term challenge despite of its many rewards. Parents to children with disabilities report high levels of parenting stress, depression and anxiety. The relationship between the parent and child functioning appear to be bidirectional. However, only a few interventions geared towards the psychological well-being of parents have been systematically evaluated. The aims of this study were to evaluate feasibility and the preliminary efficacy of the novel Navigator ACT acceptance and commitment therapy group intervention for parents to ASD and other disabilities in the context of outpatient disability services.
Methods
Stressed and distressed parents (n=94) to children (0-17 years) with ASD (n=66) and/or other disabilities (n=28) were allocated to the 5-session manual-based Navigator ACT intervention. The intervention was delivered in several clinics by two disability services professionals currently participating in the Navigator group facilitator program. Feasibility was measured by treatment completion and parent satisfaction while preliminary efficacy was assessed with self-rating instruments from the baseline (time-point one, T1) to post- intervention (T2), and 3-month post-intervention follow-up (T3).
Results
69 out of 94 (80 %) of the parents (ASD n=66, other disabilities n=28) completed the intervention, i.e. attended at least 4 out of 5 treatment sessions. Significant changes from pre- to post-intervention were observed in psychological flexibility, mindfulness, depression and anxiety with moderate to large effect-sizes. The decline in parental stress reached significance first at 3-month follow-up. In addition, child’s difficulties (e.g. emotional and behavior problems) and the impact of these difficulties on family declined. All efficacy-related measures were maintained or improved at 3-month follow-up.
Discussion
Navigator ACT was a feasible treatment for distressed caregivers in the outpatient disability services context. The preliminary results of the efficacy of Navigator ACT were promising, and support the bidirectional nature of effects of the psychological well-being. Navigator ACT seem to help parents in challenging situation to regain psychological well-being, thus enhancing the psycho-social environment of the child with disability and the entire family. A randomized and controlled trial is necessary to confirm these findings.
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-25
Micro-costing of the Incredible Years Autism
Spectrum and Language Delays Programme
Authors:
Anwen Jones, Bangor University, Bangor, United Kingdom Judy Hutchings, Bangor, United Kingdom
Joanna Charles, Bangor, Abkhazia
Introduction
Communication difficulties associated with autism are a strong predictor of externalising maladaptive behaviour. Child emotional problems and conduct difficulties are reported as being a greater cause of distress and mental health problems to parents than the core symptoms of autism. Evidence based parenting programmes such as the Incredible Years (IY) series are effective for both treatment and prevention of child conduct problems, and associated social and emotional problems. The IY Autism programme is a new addition to the Incredible Years suite that targets parent-child relationships and broad developmental outcomes including communication, social skills and behaviour problems. Although there is strong evidence demonstrating the effectiveness of parenting programmes, economic evaluations of their cost effectiveness are rarely undertaken.
Methods
This costing was conducted from a public sector multi-agency perspective, alongside a pragmatic RCT evaluating the Incredible Years Autism programme. The sample consisted of 58 families from four centres across North West Wales. Data was gathered from cost diaries documenting all expenditure including group leader salaries, venue hire and administration costs. Initial training and group leader supervision were also added. Costs of future roll-out of the programme were calculated for five families per group (average number of parents attending sessions in RCT), and for ten families per group (recommended maximum number of attendees).
Results
Total costs to set up and deliver the program as part of normal service delivery were £8103.02 (£810.30/child with 10 parents attending, £1620.60/child with 5 parents attending). Future roll-out cost of the program, excluding initial set-up costs (training, materials etc.) was £2648.62 (£264.86/child with 10 parents attending, £529.73/child with 5 parents attending).
Discussion
Using a previously developed and standardised framework ensured precise and accurate micro-costing of the IY Autism programme. This contributes towards identifying the costs and benefits of the programme for policy deciders, future implementation, and provides information for any future cost-effectiveness analysis. This research also contributes to the understanding of the cost of autism to public health services, and increases economic information on parenting programmes shown to benefit the wellbeing of both children and parents.
Keywords: Adapting, Challenging Behaviour, Communication
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-27
Atlass - a stressreduction mindset til staff and
parents
Authors:
Birgit Drasbaek Søgaard Isene, Langagerskolen, Aarhus, Denmark
Merete Kirkfeldt, Center for Specialpædagogiske Børnetilbud, Aarhus, Denmark
Introduction
We were interested in stress in both staff and parents to children and adolescents with ASD diagnosis. We focused on the impact stress have on both the life of parents and children/adolescents. We were concerned about how to secure development and wellbeing in this group of people.
Methods
We developed a course and training-programme which we give to both parents and our staff to secure a mindset, where focus is on stress-managementWe are still in process with developing and evaluating this
Results
We find that when staff and parents are given methods to understand their own stress and to analyse upon their own stress and coping it is possible to choose other/different copingstrategies. To be able to choose other copingstrategies tend to increase wellbeing and reduce stress.
Discussion
Our focus is relevant because reducing stress via being able to choose other coping- strategise eg. gives the opportunity to a life with wellbeing and development. We are focused on how we can increase the possibilities for development and inclusion for individuals with ASD and their families.We see this as a mindset equally important as concrete training- methods.
Keywords: Development, Family, Stress
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-28
Adaptability, cohesion, and satisfaction in families
with a child in the autism spectrum
Authors:
Katerina Antonopoulou, Harokopio University of Athens, Athens, Greece Sofia Kouvava, Harokopio University, Athens, Greece
Georgia Karavia, Harokopio University of Athens, Athens, Greece
Aglaia Stampoltzis, ASPETE, Athens, Greece
Katerina Maridaki-Kassotaki, Harokopio University of Athens, Athens, Greece
Introduction
The impact of having a child with autism in the family is grave, for both parents and siblings. Negative consequences have been reported on the way family members function and on their relationships. Relevant research evidence is sparse in Greece and, thus, the present study aimed to examine family adaptability, cohesion and satisfaction, as well as sibling relationships in families of children with and without autism. Additionally, it investigated the role of certain demographic characteristics such as other offsprings in the family or the child’s age on the above factors.
Methods
Participants were 46 parents from the broader area of Athens who agreed to complete three self-report questionnaires. Their children on the autism spectrum attended either special schools, or inclusive mainstream schools or Day Care Centres. The questionnaires administered by the researchers included (a) the Family Adaptability and Cohesion Evaluation Scale (FACES III), (b) the Family Satisfaction Scale (FSS), and (c) the Sibling Inventory of Behaviour (SIB). Data collection was completed in three months’ period of time.
Results
The results showed that parents with only one child with autism are less satisfied with the adaptability of their family than those who have more than one children. In addition, according to the participants’ answers, it has been suggested that the older the child with autism is, the less acceptance and support he/she receives from his/her siblings. However, when strong emotional ties develop among family members typically developing children seem to support their siblings with autism and to exhibit fewer aggressive behaviours and feelings of shame. Therefore, the cohesion and satisfaction of the family of children with autism seem to affect positively sibling relationships.
Discussion
The present study pointed out the importance of family functioning in families with a child in the autism spectrum and how the strengthening of the emotional ties among family members may develop healthy sibling relationships. As there are very few similar studies internationally, our findings provide insight about family functioning and interpersonal relationships in families of children with autism, as well as the opportunity to formulate useful suggestions that will help future research efforts.
Keywords: Adapting, Family, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-29
Autisme Info Service: A COMPREHENSIVE MULTI- CHANNEL AND MULTI-TARGETED NATIONAL INFORMATION AND REFERRAL SERVICE
Authors:
Marion Lavergne, Autisme Info Service, Clamart, France
Florent Chapel, Clamart, France
Introduction
According to the report of the French “Cour des Comptes”, published in December 2017, 85% of people with autism do not benefit from appropriate care.
While France has taken the measure of this major public health problem in recent years, the life course remains a battleground for people with autism and their families.
The lack and dispersion of information on the pathology and the warning signs, the absence of referencing of support and training systems, the virtual non-existence of coordination between the various stakeholders and health professionals, the difficulty of administrative and educational procedures... are all shortcomings that today lead a certain number of users and their representatives to request complete and accessible information via a dedicated support service.
It is in response to this observation that the Autism Info Service system was born.
Methods
The mission of Autism Info Service is to provide general and up-to-date information on autism spectrum disorders, to relay the recommendations of the HAS, to support the persons concerned and their families, to guide users towards the services best suited to their needs.This mission is conducted in accordance with the law and the dignity of individuals and in a non-judgmental and neutral approach.Autism Info Service is aimed at women and men with autism and their families, health and social professionals, supervisors... and more generally, anyone interested in autism.Autism Info Service is the first national free information and listening service by telephone, e-mail and chat to help and guide people with autism, their entourage and professionals working with them on questions relating to this disability and their future.
Results
The future could materialize with the creation of an Autism Info Service Observatory to monitor the evolution of the expectations of the publics concerned and practices through an annual barometer.Autism Info Service wishes to publish the figures related to its system. These figures will relate to statistical data recorded by respondents and the digital platform, from one year to the next. This observatory could eventually help a growing number of actors to set up concrete actions in favor of better consideration and management, but also facilitate the sharing of good practices and monitor the evolution of the expectations of the publics concerned and practices.
Discussion
Keywords: New Technologies, Personalised Support, Transversal
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-30
Parental experience of participation in a parent- mediated communication intervention with their child with Autism Spectrum Disorder
Authors:
Kathy Leadbitter, , Manchester, United Kingdom
Wendy Macdonald, University of Manchester, Manchester, United Kingdom Dharmi Kapadia, University of Manchester, Manchester, United Kingdom Carol Taylor, University of Manchester, Manchester, United Kingdom Jonathan Green, University of Manchester, Manchester, United Kingdom
The Pact Consortium, University of Manchester, Manchester, United Kingdom
Introduction
There is growing evidence to support parent-mediated communication interventions for children with Autism Spectrum Disorder (ASD, e.g. Pickles et al. 2016). Interventions delivered through parents bring potential advantages over those delivered by professionals: reduced cost, increased intensity and generalisation, parental empowerment. The real-world implementation of parent-mediated intervention is heavily dependent on parental buy-in and investment, often against a backdrop of time, energy and financial constraints. Therefore an understanding of parental experience is crucial.
Methods
Participants were 18 parents who participated in Paediatric Autism Communication Therapy (PACT), a video-aided communication-focussed intervention delivered to parents by Speech and Language Therapists (SLTs). Semi-structured interviews were conducted with all participants. Interviews were transcribed and analysed using thematic analysis.
Results
6 themes emerged:- Adjustment to diagnosis: The experience of receiving the ASD diagnosis and the emotions this elicited, how the therapy was seen as a lifeline against this backdrop- Expectations: Considerable variability in parental expectations of what the intervention could achieve. Some parents wanted rapid change or assumed that the SLT would help their child to speak which led to disappointment for some- Therapy processes: For many parents the intervention allowed them to reflect on their parenting and interactions, many were surprised and shocked by what the video feedback revealed- Relationship with therapist: Common to all interviews was the high esteem in which the SLTs were held: patient, validating, positive and with the ability to lead the parents to a discovery rather than telling them what to do- Practical challenges: Time consuming, travel to sessions, length of sessions, venue, difficulties in occupying child during video feedback, concerns about confidentiality of video material- Outcomes: PACT led to many parents making enduring changes in their interactions with their child and the benefits were demonstrated in improved verbal and non-verbal communication and behaviour in their child on a daily basis. Parents were won over by the progress in their relationship with and understanding of their child
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
PACT was a positive experience for parents, helping them move on after diagnosis, feel supported and valued, and improve parent-child relationships. Expectation management and practical arrangements need consideration.
Keywords: Communication, Family, Intervention
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-33
The effect of therapeutic interventions of children
with ASD on their parents' mental health
Authors:
Marta Macedoni Luksic, Institute of ASD Slovenia, Ljubljana, Slovenia Iris Kuharic, Ljubljana, Slovenia
Tina Rehberger, Ljubljana, Slovenia
Ana Bezensek, Slovenske Konjice, Slovenia
Introduction
Parents raising children with autism spectrum disorder (ASD) often struggle to manage the demands of everyday family life. It has been reported that parents of children with ASD experience not only significantly more stress than parents of typically developing children but even more stress than parents of children with other special needs. As highly-stressed they are more vulnerable to experience mental health problems, such as anxiety and depression. In our study we aimed to determine whether the parents’ mental health (stress, wellbeing, satisfaction with life, depression) can be affected simply by their child’s progress followed by the inclusion in regular and comprehensive therapeutic intervention.
Methods
Total of 36 parents and 36 children with ASD took part in the study. Children, aged 2-12 years (M = 5.2 years, 12 girls and 24 boys) participated in developmental and/or behavioural therapeutic interventions for two months. A questionnaire battery was developed for the purpose of the study. It included COPE – short version, Parental Stress Scale (PSS), Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS), Satisfaction with Life Scale (SWLS) and Centre for Epidemiologic Studies Short Depression Scale (CES-D 10). Parents filled out the questionnaires prior and after the treatment. Therapists measured children’s progress (prior vs. after) using therapist’s questionnaire specifically formed for this purpose.
Results
The influence of the child’s progress in therapeutic treatment on different aspects of their parents’ mental health was not statistically significant. On the other hand, there is an evidence that the instrumental support, that parents received throughout the therapeutic sessions, had a positive impact on two aspects of their mental health - stress level and wellbeing.
Discussion
The parents in our study benefit the most from the instrumental support of professionals working with their children. The obtained results give us an insight of how to efficiently help parents of children with ASD to reduce their stress level and improve their well-being. Besides encouraging them to actively participate in their child’s intervention, there is a great need for target educational groups in order to support them on their way to greater independence.
Keywords: Family, Intervention, Stress
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-34
Autism: the spirit of empathy and equanimity
Authors:
Pierre Marcantonio, NA, Angoulême, France
Introduction
I am doing theater and meditation because it brings me confidence and joy of living as an autist Asperger. I also listen to epic music. The question I asked myself was: "Can autistic people be happy at all times? Can we be included in the community in this way? "
Methods
I have been doing theater since I was in school and meditation for over 10 years. It all started in Montceau-les-Mines in France. Today, I practice both in Angoulême and still in France. In theater I learn to articulate, strengthen my voice and play a character either in a play or in a movie. I do as a hobby because because I inform you that I work as a layout artist in animation. Then I meditate for 15 minutes at least once every day. For that, it is enough for me to go in a calm place and to sit cross-legged. Given my auditory hypersensitivity, silence helps me concentrate. Finally, I compare my behavior based on the number of times I do these activities. Clearly, the more I practice, the more the effects grow.
Results
I realize these activities allow me to develop more quickly and progressively joy, empathy and equanimity. The result is that I smile more often than before in everyday life and even in shocking situations. The results are beyond my expectations.
Discussion
This action could involve all people with autism because it allows them to be less depressed and to regain self-confidence in society. Indeed, these activities give them a favorable environment to develop themselves. Autistics can also learn dancing and directing films like I do. Also, I recommend to everyone to create compulsory meditation classes in all schools because we live in a society where the competitive spirit is king. As a result, the pressure is increased by this state of mind as well as depression. In conclusion, it is clear that autistic people need more calm and tranquility to succeed as human beings.
Keywords: Adapting, Behaviour, Empowerment
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-36
Group Parent Training for Autism: validate an
operational model
Authors:
Anna Carmela Auricchio, Neapolisanit S.R.L., Ottaviano, Italy Chiara Mennitto, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy Claudia Caprioli, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy Tania Di Somma, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy Annafranca Franzese, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy Carmela Menna, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy Assunta Miele, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy
Nella Miele, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy
Concetta Rosella, Neapolisanit S.R.L., Ottaviano, Na, Italia, Italy
Introduction
Parent Training is useful in families with autistic children to provide parents with a range of tools to reduce problematic behavior and increase learning opportunities for children. The goal was to create a structured PT pathway to illustrate the mental functioning of the autistic child, provide operational tools to parents to manage problematic behaviors and create networks between the parents of autistic children.
Methods
5 psychologists held group parent training sessions for one year for parents with children aged 3 to 7 with a diagnosis of autism. The meetings were 12, each with a specific topic. Theoretical knowledge and operational tools have been given to parents through operational forms specifically designed for parents. With the Parenting Stress Index (PSI) tool, parental stress levels were measured.
Results
After the training, parents experienced a level of awareness of their child's condition and greater competence in using the tool to reduce problematic behaviors and increase appropriate behavior.
Discussion
Training families with children with autism is useful for reducing parental difficulties and improving the relationship of individual parents towards disability. The group has proved to be an important way of developing self-help skills among parents.
Keywords: Challenging Behaviour, Family, Training
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-37
Cost-effective post-diagnose support programme
for an under-resourced region
Authors:
Mario Montero, University of Girona, Girona, Spain Fusté Cris, Girona, Spain
Introduction
A number of studies show that the prevalence of Autism Spectrum Disorders (ASD) is rising in alarming numbers, currently reaching 1 in every 68 people. Studies also show that the most effective approach to improve the lives of these children and their families is to support, train and empower them. This must be implemented from moment that the parents find out about their child’s condition. Authorities are unaware of the financial burden that this is having on society. As a result, there is an urgent need to create a cost-effective model of support and early intervention for these families, particularly in under-resourced geographical areas. The aim of this research is to create a post-diagnosis programme for families with young children with autism in a very low budgeted region.
Methods
In order to achieve this, the researchers have compared most of the models of post- diagnosis support provided by public institutions around the world. These programmes facilitate confidence, trust and decision-making for the families in different ways. Thirty parents of children with ASD have been interviewed in order to understand their specific needs, both during and after the diagnosis using a mixed qualitative and quantitative approach.
Results
The data gathered reveals a severe lack of expertise or clear procedures by paediatricians and other health and social professionals. Parents were consistently ignored when they verbalised concerns regarding the social and communication development of their child. Only one third of the families interviewed received diagnosis using tools scientifically accepted. Also, after receiving the news, parents were thrown into the unknown. Families were looking for concrete and trustworthy information about the specific profile of their child, support and procedures regarding interventions, tools and strategies to deal with problem behaviour and contact with other families.
Discussion
The researchers have created a post-diagnosis support programme merging the analysis of the programmes already in place in some countries with the specific needs of families. The programme takes into account the current budget that public services in this region allocate to therapy during the three months posterior to a diagnosis of ASD and uses it to fund the proposed programme as a replacement. This programme aims to tackle the challenge of autism more efficiently by being more cost-effective with the addition of empowering the families throughout the process.
Keywords: Complex Autism, Empowerment, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-39
Intensive Intervention for Late Diagnosed Autistics:
Finding Self Authors:
Dena Ms. Gassner, Adelphi University, West Hempstead, United States
Introduction
When a child is diagnosed with autism, intensive intervention protocols are often provided through early intervention, school based services and family support. However, for someone diagnosed after the age of 25, the protocol generally involves asking the person about their autism before they even really know what it is. Then there is testing, assessment, interviewing, provision of the diagnosis and no post-diagnostic support. This presentation will reflect on a specific protocol (being studied as my dissertation topic) designed to provide the adult model for intensive intervention at the time of diagnosis.
Methods
A therapeutic approach using dyad conversation, a framework of understanding autism and an introspective self-assessment is used to facilitate the person understanding 1) what is autism 2) how do I experience my autism through the lens of my unique experience of autism 3) how to others experience my autism 4) what accommodations, adaptations, supports and interventions can be partnered with disclosure to enhance understanding, facilitate more accurate and targeted reporting of symptoms and expand access to supports and services of both an informal and formal manner with agencies.
Results
While the research is in process, the anecdotal results reflect that many autistics present for diagnosis without really knowing what autism is. They also do not independently have the capacity to ascertain what is relevant to report (personality) versus what is symptomatic (autism manifestations). They also struggle to report due to shame and stigma however, when using this protocol without blame or shame, they can become more forgiving of self and more forthcoming as they no longer perceive their condition as a failure of character but a fact of life. Thus far, all have reflected that they could not have come to this level of understanding of self or meaningfully reported their needs without this systems navigation support.
Discussion
This research thus far, demonstrates that autism is an experience happening TO the autistic person until they engage this protocol for self-awareness. It allows the person to prioritize what they can and can't do without causing harm to one's overall wellness. It helps them to be more forgiving and less shame ridden. It offers them some sense of support shifting from autism happening TO them to autism living WITHIN themselves.
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-41
Empowering Parents to Support Effective Treatment: Parent Training Models Applied Across Multiple Settings
Authors:
Mark Palmieri, The Center for Children with Special Needs, Glastonbury, United States Colleen Suzio, Center for Children with Special Needs, Glastonbury, United States Shaunessy Egan, Center for Children with Special Needs, Glastonbury, United States Elizabeth Nulty, Center for Children with Special Needs, Glastonbury, United States Kristen Powers, Center for Children with Special Needs, Glastonbury, United States Courtney Cotter, Center for Children with Special Needs, Glastonbury, United States
Introduction
A clinical investigation was undertaken to study models of parent training which are evidence-based and empowering and can be applied across a variety of treatment settings. Individuals with Autism Spectrum Disorder (ASD) can experience important challenges with skill generalization. To support meaningful and effective progress it is important to engage the entire family system and enable the family to learn treatment strategies which can offer substantial benefit to the individual with ASD and, in fact, the entire family system. Treatment planning which begins with efforts to empower parents to apply therapeutic procedures consistently and effectively can substantially improve quality of life and accelerate treatment gains.
Methods
Parent training modules were applied simultaneously with direct care and across home, educational, and clinical settings. This included a primary school environment, homes, a community-based clinic, and a specialized clinic addressing the treatment of feeding difficulties. In each setting the parent training supported family members in learning therapeutic procedures for use across home and community settings and included modeling and direct observations, teaching for the family, training on data collection, and supportive feedback to help family members learn to utilize strategies in a fashion consistent with professional implementors. Parents were also provided with data collection tools and guidelines to help organize their efforts outside of the training and were monitored over time for skill generalization
Results
When provided with a supportive coach model parents were not only able to learn the skills needed to implement therapeutic strategies successfully, they found the process effective and meaningful. Further the direct treatment effects for the individuals with ASD supports the positive impact on skill transfer across environments.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
This investigation strongly supports that family training should be incorporated into treatment across all environments and that providers should offer this service as a standard of care whenever possible. The information collected endorses the premise that families can implement therapeutic strategies very well when provided with appropriate training and that individuals with ASD benefit markedly from such efforts. Further, family members report a high degree of investment and confidence in these treatments as well as comfort receiving coaching as well as supportive feedback.
Keywords: Family, Training, Treatment
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-42
Understanding the educational needs of culturally and linguistically diverse children with autism: A scoping review
Authors:
Despina Papoudi, University of Birmingham, School of Education, Disability Inclusion and Special Needs (DISN), Birmingham, West Midlands, United Kingdom, United Kingdom
Clara Jørgensen, University of Birmingham, Birmingham, United Kingdom
Karen Guldberg, university of Birmingham, Birmingham, United Kingdom
Hedda Meadan, University of Illinois Urbana Champaign, Urbana, United States
Introduction
We conducted a scoping review of studies conducted in the UK and the USA to ascertain what is known about culturally and linguistically diverse (CLD) children with autism. The main aim was to i) understand current research regarding the experiences and needs of CLD families of children with autism and practitioners who work with them, ii) identify available resources or interventions that can support both families and practitioners, and iii) understand ‘state of the art’ as regards to representation of diversity in autism research.
Methods
A systematic search of four electronic databases: 1)PROQUEST Social Sciences Premium Collection (Education Collection), 2)EBSCO ERIC, 3)PSYCINFO, and 4)SCOPUS including MEDLINE was conducted. Seventy-seven studies met all the following inclusion criteria: the study 1)focuses on individuals with autism who are 18 years old or younger, 2)focuses on culturally and linguistically diverse populations, 3)was published between 2000 and 2018, 4)was conducted in the UK or the USA or the participants were living in the UK or the USA, 5)was published in English and in a peer-reviewed journal, 6)included empirical data, 7)included as participants parents, family members, teachers, therapists, or children.
Results
Emergent themes from the preliminary analysis indicate that social perceptions of autism are influenced by cultural and linguistic contexts, include exclusion from the educational and social system of CLD children with autism, and challenges about language preference in bilingual environments. Gaps in the existing literature include focus on only specific ethnicities, lack of participatory research and stakeholder involvement or lack of capturing the autistic ‘voice’.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
There is a need to research, conceptualize and develop good educational practice for autistic pupils with respect to ethnic and linguistic diversity. This includes a need to increase school practitioner’s knowledge of appropriate educational practices in autism in culturally sensitive ways. We put forward a framework for addressing the educational needs of culturally and linguistically diverse children with autism. This focuses on the intersection between disability and ethnicity. It is hoped that this can guide future research and the development of resources for parents and practitioners working with culturally and linguistically diverse children.
Keywords: Culture, Education, Inclusion
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-43
The evaluation of the functioning of families with
ASD children using the Circumplex Model
Authors:
Piotr Poniewierski, Department of Rheumatology and Rehabilitation, Poznan University of Medical Sciences, Poznan, Poland
Anna Kostiukow, Department of Rheumatology and Rehabilitation, Poznan University of Medical Sciences, Poznan, Poland
Wojciech Strzelecki, Department and Clinic of Clinical Psychology, Poznan University of Medical Sciences, Poznan, Poland
Wł,odzimierz Samborski, Department of Rheumatology and Rehabilitation, Poznan University of Medical Sciences, Poznan, Poland
Introduction
Autism Spectrum Disorder (ASD) is a disease described as strongly heterogeneous due to a large number of symptoms which may appear in the child's functioning. Adults life of people with ASD depends on the early introduction of intensive therapeutic programmes, modifying the undesirable behaviours, and aimed at teaching social and communication skills.The aim of the paper is to evaluate the functioning of families with an ASD child and compare it to the functioning of families with healthy children.
Methods
The study was performed using (Flexibility and Cohesion Evaluation Scales, FACES-IV). The study included 70 parents of ASD children, and 70 parents with children without diagnosed ASD, as the control group.
Results
Two of the many results has been established that the parents of autistic children achieve lower results in the Balanced Cohesion sub-scale than the control group. Also, the parents of ASD children obtained higher scores in the Disengaged sub-scale than the control group.
Discussion
This may be a significant result, suggesting the risk of the occurrence of a disturbed family system, functioning in families with children with ASD, which should be a trigger for providing these families with early family functioning diagnosis and consequent support and therapy.What does this paper add? This paper shows that may be a significant result, suggesting the risk of the occurrence of a disturbed family system, functioning in families with children with ASD, which should be a trigger for providing these families with early family functioning diagnosis and consequent support and therapy. The study was performed using (Flexibility and Cohesion Evaluation Scales, FACES-IV). The study included 70 parents of ASD children, and 70 parents with children without diagnosed ASD, as the control group.
Keywords: Complex Autism, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-44
Developing parent education in autism in south-east
Europe: the ESIPP project
Authors:
David Preece, Centre for Education and Research Faculty of Education and Humanities University of Northampton, Northampton, United Kingdom
Eleni Theodorou, European University Cyprus, Nicosia, Cyprus
Katerina Mavrou, European University Cyprus, Nicosia, Cyprus
Jasmina Stosic, Edukacijsko-rehabilitacijski fakultet, Zagreb, Croatia
Jasmina Troshanska, Macedonian Scientific Society for Autism, Skopje, Macedonia
Loizos Symeou, European University Cyprus, Nicosia, Cyprus
Jasmina Frey Škrinjar, University ofZagreb, Zagreb, Croatia
Vladimir Trajkovski, Macedonian Scientific Society for Autism, Skopje, Macedonia
Paul Bramble, University of Northampton, Northampton, United Kingdom
Aurelie Baranger, Autism Europe, Brussels, Belgium
Cristina Fernandez, Autism Europe, Brussels, Belgium
Ron Fortuna, Target Autism, Rushden, United Kingdom
Angela Capper, Target Autism, Rushden, United Kingdom
Ana Ružić, Centar za Autizam, Zagreb, Croatia
Sanja Aguila Munoz, Centar za Autizam, Zagreb, Croatia
Nefi Charalambous - Darden, University of Northampton/Cyprus Ministry of Education, Limassol, Cyprus
Angela Winstanley, AASP, Limassol, Cyprus
Julia Hardcastle, Autism Concern, Northampton, United Kingdom
Introduction
Autism can challenge typical parenting styles, causing parents to feel deskilled and disempowered, especially when little support or information is available to them. Parent education has been shown to be effective in improving personal, educational and social outcomes for individuals with autism and their families. However, though parent education programmes exist in parts of Europe, in others – such as south-east Europe - they have been extremely limited or non-existent. This presentation reports on a 3-year project (Sept 2015-Aug 2018) developing, providing and evaluating the impact of parent education across three south-east European countries: Equity and Social Inclusion through Positive Parenting (ESIPP).
Methods
A partnership of parents, professionals and academics worked together to carry out the project in Croatia, Cyprus and the Former Yugoslav Republic of Macedonia. The project was evaluated using a combined process and outcome evaluation methodology. This included quantitative methods (pre- and post-training parent questionnaires, analytics) and qualitative methods (parent interviews, trainer focus groups and reflective diaries).
12th Autism-Europe International Congress – September 13-15th 2019
Results
The ESIPP parent education programme was based on identified good practice and locally differentiated for the three countries. Local training teams were developed, providing 19 training workshops at 11 sites, training 335 parents.
Attendees reported that they took away practical strategies to use with their children, gained ideas to keep their children happy, increased their knowledge about autism, increased their child’s social opportunities through attendance, and developed personal support networks. Post-training interviews in all three countries showed that parents identified positive changes in their children, particularly with regard to communication, the management of restricted interests and dealing with sensory issues.
In addition, almost 450 delegates attended stakeholder conferences.Feedback regarding the project, its aims and materials was overwhelmingly positive, and contributed to the ongoing sustainability of parent education in the three countries.
Discussion
This project highlights the importance and impact of parent education. Partners have worked with local policy-makers to ensure that parent education will continue to be provided and developed in these three countries, and wider ongoing impact of the project is supported by training materials being freely available from the project website and Erasmus+ portal.
Keywords: Family, Inclusion, Learning
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-45
Training Video as an Appliance for Special Education Teacher in Parent Councelling for Collaboration Betterment
Authors:
Ethel Reesar, Tallinn, Estonia
Introduction
State of affairs in education field today is that many educational institutions are unprovided with special education teachers but the need for them is higly rated. Lack of special education teachers causes a situation where children with special needs are not supported in terms which are needed for them because teachers who work with these children don’t have enough knowledge of how to adapt the school or kindergarten environment in a way that is needed. Parents also may not have enough help and support to cope with their child with special needs. One of solutions is that child with special needs gets special education therapy from rehabilitation centre. That way, parents have better opportunities to master different skills of developing and teaching their child at home. Also, it gives special education teacher a chance to start a lucrative collaboration with parents. Therefore, it is important to guide parents how to be active network members and also how to be active member in collaboration with special education teacher. It is important to find a way how to inspire and encourage parents to do all of this. Present research is a study of development where training videos for parents were made to support them in developing their child at home. The autohor of this research wanted to find out if training videos would encourage parents to be more active teachers to their children with special needs.
Methods
The research took place from November 2017 until March 2018. The practical part of the research was conducted via qualitative interviews between parents of children with special needs. After that, analyzing the results were done.
Results
The research outcome showed:1) Training videos were positively accepted by parents. 2) Parents found that exact descriptions which were sent along with the training videos were helpful and made it easier for them to understand the purposes of activities seen.3) Training videos motivated parents to do developmental activities at home.
Discussion
A suggestion to use training videos in their work has been made to other specialists whos everyday job is to develope children with special needs and councelling parents. The author of that research has an idea that there should be some kind of website in the future which contains different videos made by specialists to get ideas of activities to use while working with children with special needs.
Keywords: Development, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-47
PROGRAM FOR PARENTS: "BALANCED CHILD WITH ASD" A SUCCESSFUL WAY TO RAISE A CHILD WITH AUTISM
Authors:
Irina Schurov, STARS association, Lonay, Switzerland Olga Pavlova, STARS association, Lonay, Switzerland
Introduction
PROGRAM FOR PARENTS: “BALANCED CHILD WITH ASD” A SUCCESSFUL WAY TO RAISE A CHILD WITH AUTISMFor many parents, raising a child with autism is a very challenging and overwhelming experience. The purpose of this presentation is to introduce “Balanced child with ASD”, an effective program for parents based on personal positive experience and a successful collaboration with professionals. This program is a step-by-step practical guide for parents to establish a balanced environment and life style, identify and address the fundamental needs of their child and provide an effective holistic solution for these needs.
Methods
This program is based on 15 years of successful and positive experience of a particular parent and professional of autistic child and incorporation of many different holistic techniques and methods. This program is packaged in the format for easy use by other parents. It contains three main domains which then are presented across twelve different modules.Restoration: Detoxification, Sleep, Environment and Intermission.Stimulation: Nourishment, Interventions, Education and Exercises.Attitude: Positivity, Curiosity, Compassion and Motivation.
Results
As a result of this new program, at least 10 children with autism have improved their quality of life, made a successful transition from primary school to secondary, to college and have even found jobs. 20 other children still in the process of making great progress and are at different stages of positive changes. What is remarkable that life of a whole family is improving as a result of being at this program. Testimonials, real life stories and many happy families are the true outcomes of this program
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
As the number of children with autism grows worldwide, families require more approachable and effective ways of supporting and raising their children. Inspired and empowered parents with the knowledge, real tools and clear guidance to follow can provide better care for their children and can help them to become valuable citizens of our society. The “Balanced child with ASD” program has been designed exactly for this purpose and can be adapted to any country and any local region. Parents who would like to provide long-lasting support for their children will find this program very beneficial. It would, therefore, be advantageous for this program to be popularized and translated into different languages such as French, German, Italian. Local funding would be very helpful to support this initiative.
Keywords: Empowerment, Family, Program
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-48
Systemic psychotherapy for supporting family and
therapy of child with ASD
Authors:
Katarzyna Seremak, Strefa terapii i edukacji rodzinnej/ State Academy of Sciences, Kraków, Poland
Introduction
Big influences of the family functioning was observed in the therapy of children and adolescents, young adults with ASD. During 8 years of implementing different therapy forms it was noticed that family as a system develops specific characteristic and strategies to deal with autism and that dependencies between ASD deficits and family ways of dealing with autism are mutual. The question was, What are the differences in family needs when dealing with autism and therapy of children with ASD? Also- Who is therapy for? for child or for the family? or maybe for the child and the family? What are the topics and the benefits of family therapy for parents and siblings?
Methods
Case studies. Flashback and experience from therapy of more than 150 children with ASD and their families. Describing family contribution for the therapy . Drawing attention to shifts in the emotional needs within family of people with ASD and how they work with them in family therapy for the benefits of whole system. Indication for family development aims and how do they differ from families without child with ASD.
Results
They are different influences of family mechanisms on the effectivenes of therapeuthic activities adressed to people with ASD at various stages of development. They is need of redefinition of concepts: differentiation, gratification, independence, emotionaloity dependence in the context of functioning characteristic . It is crucial for the people with ASD considering family needs in the therapy of their children and apreciate how big influence does it have for the quality of any implemented therapy .
Discussion
Discussion of the characteristic and practical difficulties in the therapy in the context of interaction with family system: boundaries in the family, various difficulties of the transition to subsequent stages of development , family roles, emotionality, ties, family diversity. The need of redefinition of concepts: differentiation, gratification, independence, emotionaloity dependence in the context of functioning characteristic child with ASD and whole family system . The reflection about how much do we consider family needs in the therapy of children with ASD and what can we do for increasing family participation in the therapy to help parents and siblings needs.
Keywords: Complex Autism, Development, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-49
Relationship between parents and therapists during
treatment
Authors:
Antonia Spanou, private practice, N Kifissia, Greece
Evripidis Nikolaos Chelas, private practice, N Kifissia, Greece Ioannis Vogindroukas, Proodou, 28, N Kifissia, Greece
Introduction
Relationship between parents and therapists always remains a crucial key to therapy outcomes and overall prognosis of persons with ASD.From the announcement of the diagnosis to the understanding of the several characteristics of the disorder and the engagement to a specific therapeutic scheme, there are several challenges to confront and procedures that should be followed from both sides.In the every day practice, practitioners in a very high percentage seem to forget the importance of parents’ involvement to therapy or even more often resist engaging with the parents due to fear or lack of knowledge and experience on family counseling.The goal is to evaluate the importance of a functioning communication system between parents and therapists, for the person's inclusion and the whole family's quality of life.
Methods
A sample of 250 families with children or adolescents with ASD is studied according to whether parents or carers were involved in therapy of their children and in which way they did, if they had their own personal therapy and which kind. In addition, we recorded whether therapists had support, supervision or personal therapy during providing their services. Those factors are related with the outcome of therapy and the quality of life of the whole family.
Results
Communication between parents and their children's therapists seem to be hard in many cases. This is due to lack of therapists' experience in counseling, difficulty to control or handle with negative emotions (anxiety or disappointment) during therapy in front of parents , parents' communicative difficulties and emotional involvement. Working in a therapeutic team seems to be a positive-supportive factor for professionals which can reinforce the interaction with parents. Therapeutic schemes in which parents participated in an energetic and creative way had better outcomes.
Discussion
Results suggest that a good relationship between parents and therapists as well as parents' involvement in therapy are important for a better prognosis and inclusion. More studies should be made in order to find out which is the most appropriate and effective way to achieve this goal.
Keywords: Family, Inclusion, Treatment
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-50
Quality of Life of Parents of Children with ASC and Their Complacence with Educational Services: Results from a Large-n Quantitative Study
Authors:
Vivien Németh, ELTE University, Institute of Special Needs Education for People with Atypical Behaviour and Cognition & HAS-ELTE ‘Autism in Education’ Research Grou, Budapest, Hungary
Krisztina Stefanik, ELTE University, Budapest, Hungary
Márta V. Molnár, ELTE University, Institute for the Psychology of Special Needs & HAS- ELTE ‘Autism in Education’ Research Group, Budapest, Hungary
Miklos Gyori, ELTE University, Institute for the Psychology of Special Needs & HAS-ELTE ‘Autism in Education’ Research Group, Budapest, Hungary
Introduction
Positive relationships were found between quality of life (QoL) in parents of individuals with ASC, and the quality of services received by their children with ASC (Lai & Oei, 2014, Siman-Tov, Kaniel, 2011, Eapen & Guan, 2016, Frantzen et al., 2016). A pilot study from a Hungarian sample brought similar results (Gyori et al., 2016). The main objective of our study was to explore the relationship between perceived quality of educational services received by children and adolescents with ASC and the QoL of their parents. Findings were compared to those from parents of neurotypical individuals.
Methods
Data were collected from parents of individuals with ASC, providing data on 346 children (age range 6 –18 years) and from parents of neurotypical individuals, 166 offsprings (age range 6-18 years). There was no significant difference between parental groups in level of education or in type of residential settlement. Data were collected by an on-line questionnaire battery, composed of, among other tools, the WHO-QOL BREF and the Quality of Life in Autism Questionnaire (QoLA); parents’ subjective complacence with educational services was measured by rating questions. Symptom severity was measured by the Social Communication Questionnaire (SCQ). For respondents without on-line access or relevant competencies, an assisted paper-and-pencil data collecting method was offered.
Results
Significant differences were found between the QoL measures of the two groups (ASC/NT) in all domains. The severity of symptoms in children with ASC showed negative relationship with parental quality of life (QoLA). In the ASC sample, all domains of parental QoL showed significant positive relationships with parents’ subjective complacence with educational services received by their children. In the group of parents of neurotypical children, only the ‘environment’ domain of QoL showed significant (positive) relationship with parents’ complacence with educational services.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
Results, coming from the first large-n representative study on the issue in our country, are overall in line with previous findings from the international literature, confirming further their relevance across cultures. As a novel aspect, our results point at the importance of parental perception of quality of educational services received by the child.
Keywords: Education, Family, Quality of life
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-52
Mothers of preschoolers with autism spectrum disorder (ASD): Parenting behaviour, parenting stress and ASD characteristics
Authors:
Lotte Van Esch, KU Leuven, Leuven, Belgium
Melinda Schaap, KU Leuven, Leuven, Belgium
Greet Lambrechts, Child Psychiatry, UPC-KU Leuven, Leuven, Belgium Rianne Jansen, KU Leuven, Leuven, Belgium
Karla Van Leeuwen, KU Leuven, Leuven, Belgium
Ilse Noens, KU Leuven, Leuven, Belgium
Introduction
Preschool age can be a very challenging time for parents of a child with ASD. Early ASD signs of their young child can become more pronounced, and parents may have to cope with the recent diagnosis and the start of intervention services. Not surprisingly, parents of preschoolers with ASD experience more parenting stress, compared with parents of typically developing children or children with another disability. Moreover, they may have ASD characteristics themselves, possibly influencing their parenting behaviours.
Methods
In total, 42 children participated together with their mother. Children in the ASD group (N=21) were matched with the control group (N=21) on developmental age and gender. Maternal parenting behaviour was observed during three tasks and additionally evaluated through a self-report questionnaire. Parenting stress and ASD characteristics were evaluated through self-report questionnaires. Linear mixed models (LMM) were used to compare the means of parenting behaviours among mothers of children with and without ASD. Additionally, within-group centered maternal ASD characteristics and parenting stress were added as covariates to investigate their role in parenting behaviours. Finally, both the interaction of group with parenting stress and with ASD characteristics were included to investigate whether the role of these maternal characteristics was similar for the two groups.
Results
Mothers in the ASD group reported more parenting stress than mothers in the control group. Maternal ASD characteristics did not differ between groups. Mothers in the ASD group demonstrated more negativity and less sensitivity towards their child during observation. When children with an IQ below 70 (n=5) were excluded from the analyses, only the difference in observed negativity remained significant. Considering the self-report questionnaire, a significant group effect was only found for stimulating the development, with a lower score in the ASD group. No effect on observed or self-reported parenting behaviour was noted for either parenting stress or maternal ASD characteristics, nor an interaction with group.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
We conclude that parenting behaviours are largely comparable across the ASD and the control group. However, mothers of preschool children with ASD experience more parenting stress, show less observed sensitivity and more negativity and report less stimulation of the development. This may indicate that these mothers still have to find a way to deal with their child’s ASD.
Keywords: Family, Preschool
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-53
ASD services for adults requiring very substantial
support: the family perspective
Authors:
Cinzia Correale, Reference Centre for Behavioural Sciences and Mental Health, Istituto Superiore di Sanità, Roma, Italy
Barbara Trimarco, Cooperativa Giuseppe Garibaldi, Roma, Italy
Marta Borgi, Reference Centre for Behavioural Sciences and Mental Health, Istituto Superiore di Sanità, Roma, Italy
Maurizio Ferraro, Cooperativa Giuseppe Garibaldi, Roma, Italy
Simona Levanto, Cooperativa Giuseppe Garibaldi, Roma, Italy
Francesca Cirulli, Reference Centre for Behavioural Sciences and Mental Health, Istituto Superiore di Sanità, Roma, Italy
Fiorenzo Laghi, Department of Developmental and Social Psychology, Università Sapienza Roma, Roma, Italy
Aldina Venerosi, Reference Centre for Behavioural Sciences and Mental HealthIstituto Superiore di Sanità, Roma, Italy
Introduction
Young adults with autism spectrum disorder (ASD) and their families experience loss of support from health and social services during the transition to adulthood (Thompson et al, 2018). To arrange appropriate adult services, families should find competent facilities providers . When services are lacking or inadequate, some families set up self-managed services in the attempt to answer long life challenges due to ASD condition (Anderson & Butt, 2018). To explore experience with health and social services of parents of young adults with ASD requiring very substantial support, a qualitative study was conducted in a group of families who set up an integrated social agricultural cooperative to promote social and working inclusion of their children.
Methods
Two focus groups of one hour and a half each were conducted with nine parents recruited via the administrative services of the cooperative “Giuseppe Garibaldi” in Rome, Italy. All the participants were parents of young adults involved in a one-year project financed by European social funds. Qualitative interviews were digitally recorded, transcribed, and analysed by using content text analysis associated with a grounded theory approach. A questionnaire on specific domains related to services experience was also administered at the end of the encounter.
Results
The focus groups provided detailed information relating to the experience of the family with services. Emergent themes included bureaucracy issues, lack of services, fighting for access, staff problems, adequacy of intervention programs and emotional and financial burden of “doing it yourself”. Overall, they confirmed the urgent need of innovative services supporting community living of their children.
12th Autism-Europe International Congress – September 13-15th 2019
Discussion
Despite recommendations of international clinical guidelines (NICE, 2011, New Zealand Autism Guidelines, 2016, SIGN 2016), our preliminary results confirm that families of young adults with ASD still experience a lack of services during the transition to adulthood and long term support (Anderson, Lupfer & Shattuck, 2018). Overall, parents reported the scarcity of follow-up programs for medical, psychiatric, and daily needs as well as interventions suited at an individual level, able to promote autonomy and inclusion of their children. More research is needed to understand unmet necessities of young adults with ASD requiring very substantial support and their families in order to identify appropriate solutions taking into account Quality of Life models (Brown et al 2009).
Keywords: Family, Services, Transitions
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-54
They know what I'm talking about
Good Start Peer Support Project Authors:
- Impact of the
Elina Vienonen, The Finnish Association of Autsim and Asperger's Syndrome, Helsinki, Finland
Elina Havukainen, The Finnish Association for Autism and Asperger's Syndrome, Helsinki, Finland
Introduction
The Good Start project of The Finnish Association for Autism and Asperger’s Syndrome 2014–2017 includes the development of a model of early-stage peer support, in which personal support can be offered in the supportee’s everyday environment. The project has trained volunteer peers in different parts of Finland to offer support when the autism spectrum diagnosis is still recent or has not yet been confirmed. All volunteer peers have personal experience of the autism spectrum. In the project, parents encounter other parents of children with an autism spectrum disorder, adults encounter other adults with an autism spectrum disorder etc.
Methods
In 2017 we prepared a report on the impact of peer support to study its effects on the supportees and volunteer peers in addition to what the project means to them. Data was gathered by means of an online survey directed at Good Start peers and follow-up forms for the peer support offered.
Results
An essential aspect of early-stage peer support is sharing a common experience of living with ASD. The report found that this kind of connection is hard to establish with someone who has not had the same life experience, and the Good Start project meets this need for peer support based on similar backgrounds. Supportees find that encountering someone who understands what life with ASD can be like and the emotions it can arouse in different people is crucial and helps them cope. Based on the report, it can be said that, at an early stage, it is vital to meet with a peer within the same framework – someone with personal experience of the autism spectrum.
Discussion
Study shows that both supporters and supportees find this action beneficial. For supporters Good Start Peer Support gives possibility to either “give back”, show gratitude, for the support that they have received or to ensure that individuals in similar situation do not have to feel been left alone as they did e.g. For supportees contact with supporter shows that they are not alone in this new situation and may act as a possible path to peer support groups. Professionals in the field have responded well to the volunteers since they also find the peer support system helpful: now they do not have to leave people alone with their thoughts right after giving them a diagnosis. In societal perspective there is a better possibility to perceived well-being and survival in a stressful stage of life.
Keywords: Peer helper, Peer support
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-58
Keys to Family-professional collaboration model for developing social and communicative skills in children with ASD
Authors:
Peggy Wilmart, Autismo Sevilla, Seville, Spain
Marcos Zamora Herranz, Autismo Sevilla, Sevilla, Spain
Introduction
Our goal is to identify keys aspects and practices based on evidence in the use of strategies for developing social and communication skills within Family-Centred Early Intervention Service in ASD. Empowering families being one of the principal goals of the intervention.
Methods
We are supporting toddlers and children (0-6 years) in Natural Environment in order to promote optimal development in children with or at risk of (ASD). Our work is based on gathering evidence-based practices of the different intervention models specialized in Autism (such as DENVER, HANEN, etc..) and incorporate it within the framework of Family-Centred early intervention. In order to do so, we focus on the nuclear difficulties of ASD, such as social-communication skills and rigid cognitive profile that leads to the development of repetitive and stereotyped behaviours and interests. From there, our principal goals are empowering families in their knowledge and use of strategies to adjust their interactive style to the needs of their child, structure and manage the context to encourage communication and social skills and as well as intentions. We work together (family-professional) to develop strategies that will enable children ́s higher functioning in their natural environment, using Social Communication programme for early intervention in Autism (AITTEA) as our programme of intervention.
Results
From this review of good practices and from our practices that we have accumulated in the last four years, we have established a set of keys strategies and practices guideline for Family Centred Intervention in ASD. Our results have been very positive in empowering families and children’s development. Also we can observe higher parental competencies. Our results are based from family survey on their satisfaction with the Familiy-Centred Service, with the Individual Plan Support designed by the family and professional as well as the outcomes of the Individual Plan Support.
Discussion
As a conclusion from our experience in developing such programme and framework, it allows us to provide a services that response to the needs of families and that of the children with ASD. It is essential to be able to combine models of Family-Professional Collaboration within natural settings and the incorporation of tools and strategies in the early intervention for children with ASD.
Keywords: Childhood, Empowerment, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-60
Needs of grandparents of preschool-aged children
with ASD in Sweden
Authors:
Rano Zakirova Engstrand, Stockholm University, Stockholm, Sweden Lise Roll-Pettersson, Stockholm University, Stockholm, Sweden Mara Westling Allodi, Stockholm University, Stockholm, Sweden Tatja Hirvikoski, Karolinska Institutet, Stockholm, Sweden
Introduction
The presence of grandparents in a family with a young child with ASD can alleviate demands that parents and siblings may experience by providing necessary support to their adult children and to their grandchild with ASD. Yet, little is known about needs these grandparents may have in family and community settings. This study investigated perceived needs of grandparents in relation to their preschool-aged grandchildren diagnosed with ASD in the cultural context of Sweden.
Methods
Participants were 120 maternal and paternal, non-custodial grandparents of children enrolled into psychoeducation intervention programs provided by the Autism Center for Small Children at the Habilitation & Health (funded publicly by the Stockholm County Council). Data were collected at four psycho-educational workshops using the demographic survey, the Grandparents’ Needs Survey, and the impact supplement to the Strength and Difficulties Questionnaire – the Swedish version.
Results
Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs, grandparents’ needs were predicted by their perceived burden.
Discussion
The study's findings can inform practitioners about grandparents’ most and least prioritized needs in various topic areas, which may help practitioners to plan quality family-centered early intervention services, as well as to improve already existing formal support programs offered to grandparents, parents, and preschool teachers.
To understand further the unique needs of grandparents of grandchildren with ASD both in Sweden and other cultural contexts, qualitative and longitudinal research is needed to explore the influence of societal factors, grandparents' demographic characteristics (particularly, gender and lineage) on grandparents' involvement with their grandchild diagnosed with ASD. In addition, future research needs to develop and use more objective instruments to investigate the longer-term effects of grandchild disability on grandparental functioning.
Keywords: Family, Old age
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-61
The degree of independence of adolescents with ASD and attachment styles and parental attitudes of mothers and fathers
Authors:
Marta Zietal, JiM Foundation, Łódź, Poland Anna Wyderka, Fundacja JiM, Łódź, Poland
Introduction
Autism is a way of human development, different from the typical, manifested by differences in the way of communicating with others, establishing relationships, expressing emotions, learning and a variety of behavioral patterns. Each person with autism is an individual, and the features mentioned above can be of varying intensity (definition created by JiM Foundation). The difference in the behavior of people with ASD towards parents may translate into the development of specific parental attitudes. Parental attitudes may vary in direction and strength, which manifests in parents in a certain tendency to respond positively or negatively to a child. The specific parental attitude together with the specific attachment style of the parents affects the patterns of certain behaviors towards the child which in the period of puberty may have a bearing on the degree of independence of the teenager. The aim of the work is to analyze the relationship between parental attitude, parental attachment style and the level of independence of adolescents with ASD.
Methods
Based on the available literature, we conclude that both the attachment style and the type of parental attitude that parents / guardians represent have a significant impact on the degree of independence of their children. Thirty parents / legal guardians will participate in the study. Standardized questionnaires were used (Mieczysł,aw Plopa's Parental Attitude Scale, Questionnaire of Attachment Styles) and a questionnaire prepared by the researchers on the assessment of the level of independence of the teenager performed by the parent.
Results
Preliminary results of the study show that the type of parental attitude and the parent's attachment style influence the degree of independence of adolescents with ASD. The results obtained may have practical implications in the treatment of people with ASD. It is important to involve parents in the process of their child's therapy in order to develop his independence from the early years of his life.
Discussion
The functioning of adult people with ASD who depend on the caregivers' help is still an issue without a proper solution in Poland. We conclude, that specialized parental support in caring for adolescent children with ASD, in order to expand their autonomy, will translate into increasing their independence in adult life.
Keywords: Autonomy, Family, Teenage
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-62
Conceptualisation of parenting in research on young children with or at risk for ASD: A systematic review of observational measures
Authors:
Melinda Schaap, KU Leuven, Leuven, Belgium Karla Van Leeuwen, KU Leuven, Leuven, Belgium Petra Warreyn, Ghent University, Gent, Belgium Ilse Noens, KU Leuven, Leuven, Belgium
Introduction
The importance of early environmental experiences, such as parenting, is now more and more acknowledged in research on emergent autism spectrum disorder (ASD). However, the heterogeneity of observational measures for parenting behaviour makes it difficult to compare results and draw strong conclusions. This may have serious consequences for both research and clinical practice, as parenting assessment outcomes are needed for and used in the development and empirical testing of theories and in the design of parenting interventions. The aim of this systematic review is to take a first step towards a common language for parenting research, by critically reviewing the parenting constructs that are currently used in observational methods in studies of parenting behaviour among parents of young children with or at risk for ASD.
Methods
Web of Science, PubMed and Scopus were searched for papers investigating the parenting of young children below four years of age with or at risk for ASD. 21 papers were included in this review and synthesised narratively. Through a comprehensive consensus decision- making process, parenting constructs investigated in these papers were classified under nine overarching parenting categories that were identified based on prior categorisation by two of the authors and an independent researcher.
Results
The 21 reviewed papers used 13 unique “coding approaches” and included a total of 63 parenting constructs. Categorisation based on their description initially resulted in seven overarching categories of parenting behaviour: warmth, responsiveness, scaffolding, proactive control, intrusiveness, negativity and dyadic interaction. Due to the heterogeneity of the results, an eighth category “other” was added for parenting constructs that could not be grouped under any of the seven categories, and a ninth category “multiple” was added for constructs tapping multiple categories.
Discussion
The complexity of the categorisation process clearly demonstrates the need for a common language in research on parenting young children with or at risk for ASD. This review provides a first step towards a conceptual framework that can provide a solid foundation for the observation of parenting behaviour and thus inform theory and practice. However, further research should investigate applicability among young children of different ages.
Keywords: Childhood, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Family and stakeholder experience or support
Poster Number: SUN01-63
Self-management: from social exclusion to inclusion
in an educational setting
Authors:
Stian Orm, Autismekonsult, Moss, Norway
Jon Arne Løkke, Østfold University College, Fredrikstad, Norway
Introduction
Self-management interventions has been described as highly effective for individuals with autism in enhancing both social and academic skills. In this study the first author conducted a self-management project in high-school. The challenges were to establish relations to classmates and to participate in the social settings at school and outside of school. The research question was whether a self-management procedure could increase social initiatives and prosocial behaviour targeted to classmates.
Methods
The participant was an 18-year-old male with classical autism and the intervention were carried out in a high school setting. The independent variable consisted of a package of social skills training and tutoring. The dependent variable was prosocial behaviour and social and other initiatives measured and analysed with a single subject design (N=1). Reliability and treatment integrity were controlled by the tutor.
Results
The self-management procedure increased social initiatives and prosocial behaviour targeted at co-students, in accordance with predicted outcomes. The participant reported qualitatively the experience of increased social belongingness to the social community of the class and classmates. Follow-up probes four to six months after the completion of the intervention shows that results were maintained.
Discussion
In accordance with existing literature, this study suggests that self-management interventions are effective in increasing social skills in students with autism. Reliability and validity are challenges inherent in self-management interventions and is a challenge for researchers and practitioners to overcome. In this study we used verbal reports and descriptions from the participant to the tutor and second author to established reliability and treatment integrity of the measured results. The limited number of participants in this study represents a challenge to generalization and clear-cut conclusions, but seen in connection with existing literature there seems to be good grounds to think that self-management interventions are effective for people with autism spectrum disorders. The promise of self- management interventions in increasing social skills in people with autism should be investigated further. Self-management interventions represent a promising way to deliver interventions that is characterized by a high degree of client involvement and autonomy, and thus promote empowerment in service delivery.
Keywords: Learning, Self determination, Social
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-66
Prevention of (cyber-) bullying
Authors:
Pietro Cirrincione, Autism-Europe, Roma, Italy
Chiara Bazzan, Gruppo Asperger onlus, Sesto San Giovanni (mi), Italy Laura Imbimbo, Gruppo Asperger onlus, Sesto San Giovanni (mi), Italy
Introduction
Bullying is a common problem known since long time, nevertheless violence and discrimination is worsening and spreading more and more, assuming also new forms by cyberbullying.Children and adolescents on the autism spectrum are very often victims, not so clever to understand situations at risk of bullying because of lack of social skills, challenging their right to education and to inclusion in society.
Methods
Education is the best tool: training about bullying and autism, providing means for preventing every kind of violence for school staff, parents, children and adolescents on the autism spectrum and also class mates, in order to teach how to isolate bullies.Trainers are people on the autism spectrum and family members, with experience about bullying, autism and psychology.In social media there are tools for reporting inappropriate content.
Results
Children and adolescents on the autism spectrum can prevent situations at risk of bullying by improving their social skills, knowing their rights, understanding the difference between public and private or intimate, what is appropriated to the context, etc.By awareness, public institutions and private organizations are organizing several projects and activities. Even law enforcement developed an app for preventing bullying and drug dealing.
Discussion
Public concern is rising because of several news stories, but awareness about how to act in practice is lacking, especially for children and adolescents on the autism spectrum, because education and training is not yet common, although it is easy to provide by personal accounts and specific and targeted training.
Keywords: Childhood, Education, Empowerment
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-67
Investigating the potential of using video as a tool for reflection to develop an environmental approach to promote the self-determination of students with autism in Post-16 special education
Authors:
Laura Cristescu, University of Birmingham, Birmingham, United Kingdom
Introduction
Self-determination has been gaining increasing attention in recent decades as an educational outcome, and can be defined as ‘choosing and enacting choices to control one’s life – to the maximum extent possible – based on knowing and valuing oneself, and in pursuit of one’s own needs, interests and values’ (Campeau and Wolman, 1993, p. 2).Previous research shows that self-determined individuals with autism have better post- school outcomes and increased quality of life, by being equipped with the skills and abilities to exert control over their lives. The study is based on Bronfenbrenner’s bioecological model of human development, which recognises the importance of the relationship between behaviour and environment, and the significance of research in context. The study aims to provide a model of how video can be used as a reflective tool for staff, in promoting the self- determination of students with autism, which could then be applied to various settings.
Methods
My study will involve an emerging participatory action research design, which will be structured in three phases involving different tools of data collection, in an all-age specialist school for students with autism. The first phase involves 10 semi-structured interviews with teaching staff and parents, semi-structured observations of the Post-16 curriculum and a document interrogation of the existing Post-16 curriculum. The data collected will be used to inform the second phase, which will consist of a survey with the teaching staff, parents and students within the school. The data from the first two phases will be used to develop the environmental approach, along with the staff and students, who will be active participants, using video as a tool for reflection.
Results
The study is at the beginning of the data collection process, but an initial phase reveals that staff and parents recognise the importance of self-determination and promoting it within the school setting. A need has been highlighted to help staff recognise how best to support students develop their self-determination and how to implement their ideas which align with the environmental perspective of the approach. These will be addressed in the last phase of the study.
Discussion
The study aims to demonstrate that by changing the environment and the approach of staff, who are encouraged to reflect on their practice through watching themselves on video, students' self-determination can be promoted and aid in their transition to adulthood.
Keywords: Environment, Self determination, Transitions
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-68
The constitutions speak to autism in europe
Authors:
Giuseppe Di Genio, UNIVERSITA' DI SALERNO, Salerno, Italy
Introduction
The purpose of the work is to analyze the role of the Constiutions in Europe about autism and disability, with particular attention to the Italian and Spanish system.
Methods
On the level of disability and autism impact, the constitutional and comparative data beats all in the search for the best inclusive approach (Constitutions speak to autism), also on the theme of the so called reverse discrimination (a situation of disadvantage that becomes an advantage over the able-bodied), and unraveling between inclusion systems, as in Italy and Spain, systems with distinction in Germany and the Netherlands, mixed systems like Great Britain (on which the Warnock report 1978, also considered by UNESCO), France, Sweden and Finland.
Results
It is useful to configure and enclose, in a logic of impact, so to speak, of comorbidity, each type of disability and acronym more or less connected and complex within the framework of the "Educational Special Needs" (SEN), anglophone term, usable in Italy both also in contrast with our rules of legislative technique, which gives a good idea of ​,​,the all-encompassing idea (to the cry that we are all or could be BES, using the Italian term) or the idea omnia expected, in the spirit of the Constitutional Court ruling no. 80 of 2010 in Italy, of disability and of the aurtsm in the school (and in the university) as educational need, serious or mild, special or further and sudden in the life path of each one.
Discussion
The international and European data, in its different explanations, however, certainly acts as a fundamental support (strategy not tragedy), where it beats on the concepts of human rights, human dignity and prohibition of discrimination, also providing important aids in classification (ICF and ICF CY of 2001 and 2007) of the paths on disability and in the configuration of the new forms of the same, also in a broad sense, referred to the law n. 170 of 2010 in Italy. The salient references we need to respect, beyond the founding Treaties, are inevitably art. 26 of the Charter of Nice, in the art. 10 and 19 of the Lisbon Treaty, in art. 24 of the 2006 UN Convention (education-integration as a permanent right in a logic of reasonable accommodation), to the UN Resolution of 18.12.2007 also on the international definition of autism, art. 15 of the European Social Charter of the Council of Europe, always sensitive to issues of autonomy, disability and autism in a dinamic constitutional perspective.
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-69
Goal Mastery - enabling "Choice and Control" for
people on the spectrum Authors:
Kathleen Ferry, Statewide Autistic Services Ltd, Frankston, Australia
Introduction
This disability organisation provides a range of supports to people experiencing Autism Spectrum Disorder (ASD). During 2016, SASI Goal Mastery (GM), an evidence based system was introduced to the service. This system provides a method of transcribing client ‘aspirations’, translating them to a measurable and trackable rubric. This ensures the people supported are reaching their identified goals through purposeful activities and social relationships. It provides focus on achievement in a manner which reflects the individual. The GM approach is based on a model of trauma informed care which is data driven, provides measureable behavioural support and transitions from restrictive practice to aspiration based outcomes.
Methods
A system was needed to measure peoples progress towards their goals. GM breaks down individual aspirations and creates a Support Plan with goals, which are further broken down into smaller tasks for measurement through data tracked in the Client Management System. This enables evaluation of achievability and success of each goal. It also identifies where additional levels of support are needed. This evidence based system allows support of each person related to their specific needs, creating a usable method across all aspects of supports and all worker/carer types.
Results
A baseline analysis of GM practice was done in May 2017 by an independent evaluator. It identified key areas for development which were implemented over the next six months. A follow up evaluation in Nov 2017 provided conclusive evidence that GM is imbedded into support practice, consolidated by a further evaluation in November 2018.The people we support are consistently achieving their goals which, creates meaningful outcomes, and fosters growth for the person, staff and family. Our GM approach requires the people we support (and their staff ) to focus on their goals and continually work towards achieving them.
Discussion
External evaluation confirms that we have an evidence based systems approach to ensure the people we support have meaningful goals, leading to positive outcomes in their lives. Our GM directly provides the evidence our new funding body requires related to outcomes. It supports the individual, the funding model and the data recording to ensure ongoing individual support and inclusion.
Keywords: Adult, Empowerment, Inclusion
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-70
Youth and autism: empowerment, advocacy and
social participation
Authors:
Peggy Wilmart, Autismo Sevilla, Seville, Spain Gutiérrez Angélica, , Sevilla, Spain
Marcos Zamora Herranz, Autismo Sevilla, Sevilla, Spain Raúl Olmedo Marín, Autismo Sevilla, Sevilla, Spain
Luis Arenal Bernal, Autismo Sevilla, Sevilla, Spain Moisés Pampín Torres, Autismo Sevilla, Sevilla, Spain Alicia Martínez Mendoza, Autismo Sevilla, Sevilla, Spain Sergio Pérez Bueno, Autismo Sevilla, Sevilla, Spain
Introduction
Historically in Spain disability movements has been made up mostly of families that are initially constituted as aid groups and arise as a response to needs not covered by public bodies. The emergence of social model of disability and the recognition of other needs: participation, self advocacy, happiness have brought different perspectives in order to asset new projects.
Methods
From 2016, Autismo Sevilla is developing a new kind of activities that go further than assistance or meeting basic needs. We planned activities with young people with and without autism (same ages) and we went beyond. We proposed actions to improve self recognition and to launch motivation in order to get better levels of political participation. The knowledge of human rights in addition to empowering actions have led to a better understanding of the self and the construction of the society. To evaluate the process, we had the narratives of the participants (qualitative data) and also an statistical approach (quantitative data).
Results
We found that carrying out these activities, the contexts were fully inclusive, volunteers and young people without autism improved their levels of commitment and demanded more actions like that. For autistic participants this were the first experiences in real inclusive contexts, also without their parents, and they faced collectivelly to difficulties, talked about them and identified ways to turn contexts more autistic friendly.
Discussion
We think that this kind of projects are the future: opportunities for young autistics to meet new people and to talk about their condition in contexts they can all together learn tools to face the complexity of the social world.
Keywords: Empowerment, Inclusion, Participation
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-73
Accessibility tool recognises and helps to bypass obstacles in the everyday life of children and youth with neuropsychiatric conditions
Authors:
Marko Lahti, Autismisäätiö, Helsinki, Finland
Jonna Oksanen, Autism Foundation in Finland, Helsinki, Finland
Introduction
In the development project we aimed at finding ways to recognise obstacles (often invisible) that limit the accessibility of different environments and services for children and youth with neuropsyciatric conditions. The parents of those children and youth wished for a data base that would contain information and tips on how to solve problems and make situations easier that they face every day. With the help of service users’ know-how, we produced an accessibility tool.
Methods
The accessibility tool, a mobile app, was developed to be used in any web browser. Its’ theoretical framework consists of recognising neurological differences on three levels (biological, cognitive and behavioral), research on individuals with atypical neurobiology, knowledge on physical, psychological and social obstacles and means that enable participation and international classification of functioning, ICF. In addition, the know-how of service users (children and youth with neuropsychiatric condition and their parents) played a big role in the development process.
Results
The accessibility tool suits to be used by persons that know the child already and who are able to recognise the reasons deep-down behind of child’s behaviour. With some practise, a child can use the tool by himself/herself with an adult. With the accessibility tool you can recognise obstacles in more than 10 different actions and environments (for example in eating, in a school environment, and in getting dressed). How fluently the child acts in a situation and how stressful the situation is for the child, is assessed on a scale of three (green, yellow and red light). The user will get tips on how to bypass the obstacles that the child is facing in the situation, and decrease the stress the child is experiencing. The user gets encouraging feedback and can list his/her own means to bypass the obstacles. Finally, the user gets a summary that can be used as a recommendation for instructors and other professionals that instruct the child. The user can try the new or old means that stated on the summary to make the every day life and surroundings more accessible for the child. The user can follow the progress by using the tool more than once.
Discussion
The preliminary feedback on the accessibility tool has been promising. According to the users, every parent and professional should have similar tool at hand when they are wondering the reasons behind the behaviour of a child. Users' feedback is collected from February till August 2019.
Keywords: Behaviour, Participation, Stress
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-74
Autism, Responsibility, and the Duty to Care
Authors:
Kenneth Richman, MCPHS University, Boston | Massachusetts, États-Unis
Introduction
Philosophers have questioned whether autism makes a difference in whether people deserve blame when their behaviour appears contrary to what is morally required. Qualifying for blame (and its counterpart, praise) is part of being a moral agent, a full member of communities and families. The practical significance of these questions is reflected in a recent “The Ethicist” column in the New York Times addressing how to respond to a daughter who is unable to participate productively in family relationships.
Methods
This project applies philosophical methods of conceptual analysis and synthetic reasoning. Informed by discussions with autistic adults in several European countries, it brings influential theories from ethics to bear on facts from autism research to illuminate ethical, legal, and social implications.More specifically, the presentation examines a theory of what it means to be a responsible agent that represents current thought in philosophy and also captures commonsense judgements. This account reflects Strawsonian and related theories. As spelled out in Björnsson and Brülde 2017, moral responsibility involves duties to care. For example, parents have responsibilities of appropriate caring for children. Morally required caring has affective, cognitive, and behavioural components. It includes the duty to develop dispositions to feel and act in certain ways if they do not come naturally.What are the implications of this theory for autistic individuals, who may be affectively and cognitively atypical? In light of research on the differences characteristic of autism, what does the theory tell us about how duties to care apply to autistic people? What does the presence of autistic people in our community tell us about this type of ethical theory?
Results
Examination yields three problematic options: reject the examined theory of moral responsibility and give up some commonsense beliefs about ethics, accept the commonsense beliefs and assign extra moral burdens to autists compared to neurotypical people, or determine that autists are not full members of the moral community. The third is option is untenable. The others will be discussed.
Discussion
The available positions pose intellectual dilemmas with real-life implications. These will be discussed using the concepts of reflective equilibrium, justice, and moral luck.
Keywords: Challenging Behaviour, Family
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-75
Effective Advocacy and Disclosure: A Workshop for
Autistic People Authors:
Stephen Shore, West Hempstead, United States
Introduction
At some point in our lives everyone must advocate for their own needs and disclose the reasons why. Focused primarily for participants on the autism spectrum, this workshop begins by defining self-advocacy and a process for considering disclosure. Participants will learn the importance of gaining self-awareness, communication skills, and procedures to effectively obtain accommodations and greater mutual understanding. Doing so empowers autistic individuals to reach our potential for leading fulfilling and productive lives in employment, education, relationships, interdependent living, and in the community.Although, this presentation is primarily geared for autistic people, in the spirit of inclusion – everyone is invited to participate with the knowledge that this is "autistic space".
Methods
A three step approach for engaging in successful self-advocacy will be explored. Building on a foundation of self-understanding of what it means to be autistic for the individual, the three steps include:1. Awareness of environmental, cognitive, or socially based challenges. 2. Developing and implementing and advocacy plan3. Disclosure, or tell the reason why an accommodation or greater understanding is needed.
Results
For example, suppose an autistic person with visual sensitivities is shown a new office space by their supervisor.
Step 1 – Awareness: The room is illuminated with recessed lighting fixtures, which feels like staring into a spotlight for most others. The autistic person realizes this and now needs to develop an advocacy plan.
Step 2 – Advocacy: Scanning the room and seeing no workers wearing hat, the autistic person asks the supervisor if it's OK if they wear a hat while working. This concisely stated request – which is easy for the supervisor to understand and provide support for – is immediately followed by the next step.
Step 3 – Disclosure: The autistic person states that the lights in the ceiling give her a headache – that she must have sensitive eyes – and that she will be much more productive for the company if she can wear this hat. It's important to note that this was a partial disclosure – meaning that only the specific characteristic of autism causing the challenge was mentioned. The autism diagnosis is not revealed as it may be too much information at that time and could be distracting.
Discussion
Effective self-advocacy is a key component to fulfillment and productivity in employment, relationships, education and all other aspects of life.
Keywords: Empowerment, Self advocacy, Self advocate
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-77
Autism and self-determination: the path towards
successful citizenship Authors:
Peter Vermeulen, Semmerzake, Belgium
Introduction
Autism awareness has increased significantly the last decades, and that is a good thing. However, one of the possible unwanted side effects of the increased awareness is that autistic people are seen as more different than they actually are, resulting in unnecessary and unwanted alienation. The concept of neurodiversity (Singer, 1999) has been introduced to make us aware that autism is not a (neurological) deficit but part of the natural neurological variation. And, as with biodiversity, we should not only acknowledge this neurological diversity but also cherish it as the basis of the rich tapestry of human variation.Accepting neurodiversity is a noble goal and we still have a long way to go in creating more acceptance of neurological differences. However, accepting differences is only the first step towards inclusion of people with autism. The focus of neurodiversity is on differences, but in order to ensure that people with autism can really thrive and have quality of life, we need to see how we can connect all these neurological differences into a joint and collaborative societal project. Once the differences are recognized, we should figure out how these differences can contribute to society and humankind. This is what has been named neuroharmony (Vermeulen, 2016). It is about connecting people, just as in music where composers seek to combine and connect the different notes into a harmonious piece of music, a nice melody.In order to get there, we should abandon the traditional models of disability (the medical and the social one) and replace them by a citizenship model. Because people with autism are citizens, just like all people. With the same duties and rights. And with the same psychological needs. Therefore, autistic people should be included as valuable citizens. Starting from the self-determination theory (Ryan & Deci, 2017) we will explore how acknowledging the need for autonomy, competence and relatedness in autistic people can be the path towards neuroharmony and successful citizenship. It is time we start turning the neurological differences, such as autism, into productive sources of successful citizenship.
Keywords: Inclusion, Quality of life, Self determination
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-78
Identifying the features of ASD and ADHD in prisons
and developing rehabilitation during the sentence
Authors:
Sanna Kara, Autism Foundation Finland, Helsinki, Finland Minna Holopainen, Autism Foundation Finland, Helsinki, Finland Katri Mikkola, Autism Foundation Finland, Helsinki, Finland
Introduction
There is no accurate information on the incidence of Autism Spectrum (AS) in prisons. Research has shown that the incidence of AS is estimated to be 2.4% in the case of secure psychiatric care. The incidence of ADHD in adult prisoners is 26.2%. At the moment, this target group is under-recognized in prisons, and they do not receive appropriate rehabilitation to their needs during the sentence. Our project aims to increase understanding on neuropsychiatric conditions and to develop models to provide support at the different stages of the criminal-law process within Finland’s criminal justice system.
Methods
Adding Knowledge: To identify the target group and to increase understanding, the Police, Criminal Sanctions and Prison Health and other staff are trained. The project has developed support materials for criminal investigators and prison staff. The purpose of the material is to provide information about the features of AS and ADHD and practical tips for working with the target group.Identification Tool: The project has developed and piloted a tool for identifying AS and ADHD features in prisons. The purpose of the tool is to identify features, not to be used as a diagnostic screening tool. The aim is to create a sensitive and competent tool for identification.Low threshold rehabilitation: The development of rehabilitation in prisons has started in cooperation with prison staff. The staff have provided views on the rehabilitation needs of the target group during the incarceration. The most important method for developing rehabilitation is piloting rehabilitation in prisons, which is used to identify the needs of the target group and to develop a low-threshold neuropsychiatric rehabilitation model suitable for an exceptional environment.
Results
The need for information to identify the target group in prisons and to organize activities that meet their needs has been evident. The project has trained about 450 people working in the criminal justice sector, and created a first version of the identification tool. There are various rehabilitation programs in use in prisons, but there is no a model that meets the needs of prisoners with AS and ADHD. The project will produce a guide on the identification tool and low threshold rehabilitation in prisons.
Discussion
The recognition of the features of these individuals can at its best provide considerable benefits for the society as whole by reducing recidivism and simultaneously ensuring that the individuals’ legal rights are met.
Keywords: ADHD
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session
Rights and participation
Poster Number: SUN01-79
Strategy for Ethical Commitment in Organizations
Authors:
Marcos Zamora Herranz, Autismo Sevilla, Sevilla, Spain Peggy Wilmart, Autismo Sevilla, Seville, Spain
Jaime de La Fuente Micheo, Autismo Sevilla, Sevilla, Spain Gutiérrez Angélica, Sevilla, Spain
Lucía Madero, Autismo Sevilla, Sevilla, España, Abkhazia
Introduction
As our organization (Parent Association) grew up, ethical concerns start arise among proffesionals, families, leaders and people with Autism. That made us advance in ethical proposals on our organization developing a focused group composed by different profiles. Taking into account the Convention on the Rights of People with Disabilities and the organizational Values, we developed an Ethical Code for the Organization. Since the beginning we realised that we could only assure ethical comittment with a cultural change on the organization, so we developed different intiatives along the organization.
Methods
Our Ethical Code include objetive ethical rules in three different áreas: professionals, families and organization. In order to really impact on the culture of the organization and have evidence of it we worked in diferent approaches:-Training families and professionals on Rights of People with Autism, developing awareness of how their practice could be infringing their rights.-Make Media Campaigns and Social Networks comunication into the province and our near community.-Develop a process inside the Performance Staff Evaluation that allow us assess profesional ethical comittent and how are the behaving on the Organiational Values.-Make a Rights Evaluation Tool, based on Quality of Life models, to assess the rights of people in the organization.-Develop a new Advocate and Social Counselling Service for families and people with Autism-Established Principles of Good Governance for the Board of Directors.
Results
This approach has improved the awareness about People with Autism rights on the organization, we have tools to measure how People with Autism improved due to different actions on the organization and we assure systems that supervise, in a measurable way, Boards of Director and Staff. This way on the Ethical Comittment has finished with creating a Ethical Comittee inside the organization. Strategical initiatives on Ethics are well established for the future, and a economic investment assure.
Discussion
Supporting people with Autism and new models on disability (inclusión, collaborating with families, self determination,...) pushes to develop as profesionals and organization spaces and times to think over our practices and approaches. Cultural change has to arrive with leaders involvement and with an strategic overview.
Keywords: Ethics, Organisation, Right-based
12th Autism-Europe International Congress – September 13-15th 2019
Poster Session Research and Ethics
Poster Number: SUN01-80
Away from the Medical Model
Authors:
Asdis Bergthorsdottir, NA, Reykjavik, Iceland
Introduction
The medical model of disability has been the main model for clinical psychologists serving autistic adults and teenagers. The social model of disability and the neurodiversity movement haven't changed this practice much and there doesn’t seem to be much discussion on how psychologists should change their practice to incorporate these views.
Methods
This is a personal account of running a psychological service for autistic adults and teenagers while attempting to incorporate these new models into the practice. The service is not a diagnostic service, rather what has traditionally been termed 'treatment' but should maybe more correctly be termed support.
Results
One of the aims of the service has been to allow autistic people to define their own problems without the interference of preconceived medical ideas about anxiety or depression. They can, therefore, define what support they want without having it defined by screening or diagnostic tools. They often see their mental problems as the result clashes with society, which does not support or understand them. By having such a view, they are opposing the medical model, which sees anxiety and depression as an internal problem.Unlearning is an important part of the service where people learn to recognize their limits and unreasonable demands made on them by a neurotypical society, how to resist such unreasonable demands, and learn how to make reasonable demands on themselves. The aim is not to help autistic people to imitate neurotypicals but to be able to live as an autistic person in a neurotypical society (which will hopefully one day become neurodiverse).Service, also, tries to create an autistic safe space where, among other things, eye contact is completely non- significant, facial expression or lack of it is not thought to describe the feelings and emotions of clients and reasons for cancellations are understood.
Discussion
Clients, in general, seem happy with this alternative approach and some feel they are finally being listened to. However, this approach causes to a certain degree professional isolation for the therapist which can problematic as most therapists are still heavily influenced by the medical model. Problems can arise when the service is being paid by a third party such as a vocational rehabilitation service which makes demands on clients to conform to neurotypical norms.
Keywords: Adult, Mental health
12th Autism-Europe International Congress – September 13-15th 2019
![Coiled ribbon on Nice; expanded flower scrunchie in Europe [source: Geographica 2008]; Cambridge Companion to Modern Russian Culture [1999] with metallic headband resting on the top.](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGpshxWNH80cdhtVPFFPJhpdvrsQTxPHl77U110UQ723NTwJzR66iqa3fICT0ArtOXZNA9zvzJOeh39QEMuB0ALxk8f0cv5fvMgqD6S6_KSViYWm0aUOGYo7rxDAFyz6dM9Smuzg/s1600/IMG_3543.JPG "Maps and books and arranged objects")
