1 / 41

ASD and the family Jasmina Stošić

ASD and the family Jasmina Stošić. Potential impact of autism on the family and individual. ASD in the lifecycle. EARLY CHILDHOOD A typical developmen t L ack of interactive and reciprocal behaviors Diagnostic process Search for the intervention Numerous treatment options

koto
Download Presentation

ASD and the family Jasmina Stošić

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. ASD andthefamilyJasmina Stošić

  2. Potential impact of autism on the family and individual

  3. ASD inthelifecycle

  4. EARLYCHILDHOOD • Atypical development • Lack of interactive and reciprocal behaviors • Diagnosticprocess Search for theintervention • Numeroustreatmentoptions • Some of these treatment options give parents a hope to a “cure” and “recovery” from ASD • Require a great amount of time, energy and financial resources • Evidencebasedvs. notevidencebased

  5. ELEMENTARY SCHOOL YEARS • school settings, establishing relationships with school stuff. • concerns about social acceptance of their children with ASD. • Canberelatively goodandstable period • Lackofgoodsupportandopenresistanceofschool – increasedstress ADOLESCENCE • Challengingbehaviours • Sexuality • Awarenessoflife-long nature of ASD • Finding age appropriate services • Facingwith depression of adolescents with ASD (need for friendships, peerandromanticrelations) • Concernsaboutthe future

  6. ADULTHOOD • Formal school years finished • securing appropriate services, supervised living, working arrangements. • Majorfamiliy’s concern is about the future of the adult with ASD. • Parentsdo not believe anymore in significant positive changes. • They worry about their typical children and their role in future lifeofchilldwith ASD • They think more about aging and death (themselves, partners, friends) • In this period families could become more and more isolated.

  7. Experiencesoffamiliesin Croatia – researchwithin ESIPP project(Stošić, Frey Škrinjar andPreece) • 96 parents (21 fathers, 75 mothers) • semi – structuredinterviews (14 parents) • questionnaires • Impactofautism • Autismandfamilylife • Qualityoflife

  8. Results

  9. Impact of autism My husband and I know how to handle other people’s children, and we can make them laugh in a second, bring them in interaction, but with him sometimes I would succeed, but sometimes not. (Mother of 5-year-old) • 88% - fulfilment in caring for the child on the autism spectrum • 90% - relational problems with their child • 84% - problems combining their caring responsibilities with their other daily activities. • high level of acceptance regarding the constraints that autism placed upon them, with family life revolving around the needs and wishes of the child (Preece, 2014; Schaaf, Toth-Cohen, Johnson, Outten & Benevides, 2011) Everything we do is tweaked to him. Leisure time is with him. Every opportunity we get, we go outside to the playground or just play at home, building blocks. My wife and I don′t have time for ourselves.

  10. I am a mother but a therapist as well, during 24 hours. (Mother of 5-year-old) You becomemanicaboutyourchild (Motherof a 3-year-old) We have to make time to be parents as well. We need to be parents as well. But I have a feeling, If I am more a parent to him, if I don′t educate him, I am losing time. And that means always forcing something. (Father of 4-year-old) • Parent as therapist (Grindle, Kovshoff, Hastings & Remington, 2009; Symon, 2005) • 75% report on problems regarding their mental health • 73% report on financial problems(Nealy, O’Hare, Powers & Swick, 2012; Sharpe & Baker, 2007) I think if we started crying, that we would cry for four days non-stop. (Mother of 6-year-old)

  11. No cleardiagnosticpathways (Benjak, 2017) • Difficultiesin obtaining a diagnosis • Being passed from professional to professional in their quest. It is very hard to get a diagnosis in the spectrum. When he was 18 months old, experts wouldn′t help us. We were sure something was wrong. He was finally diagnosed when he was 4. (Mother of 5-year-old)

  12. Informalandformalsupport He likes to walk with grandpa around neighbourhood… and go on the tram… that mostly…Yes, that is their thing....and when school is out, he likes to spend weekends at grandpa′s. (Father of 13- year-old) • 84 % - wider family, and grandparents in particular, are acknowledged as important sources of practical and emotional support for families living with autism (Hillman, 2007; Twoy, Connolly & Novak, 2007) • Practice of inclusion - uneven and limited (Bukvić, 2014; Ljubešić & Šimleša 2016; Sekušak-Galešev, Frey Škrinjar & Masnjak 2015). • Positive experience of education – parentsfrommaincities I wanted an assistant for him. He was included in the nursery along with 23 other children and two teachers. For the first two months he didn′t have the assistant. It was hell. (Mother of 3-year-old) Very big progress (in school), he is more calmed, he started to make an effort, he refused to work on anything before and here we moved forward. (Mother of 8-year-old) We are satisfied with school, with therapists, they are available for us, we get information, what we don’t know they help us, we cooperate and that is most important, that we as parents can cooperate with them. (Mother of 8-year-old)

  13. Professional support for Croatian families living with disabilities (including autism) has been identified as inadequate across all disciplines and professions (IvšacPavliša, Ljubešić & Jerečić, 2012; Lisak et al., 2017) Psychosocial support for every family member is very important but it doesn′texist.” (Mother of 9-year-old) We have a psychiatrist that comes to us once a month and you can talk with him, but it is not enough. (Mother of 6-year-old)

  14. Supportgroupsandotherparents • the importance of other parents, and parent support groups, in providing both emotional and practical support to families living with autism (Luther, Canham & Cureton, 2005; Papageorgiou & Kalyva, 2010). • positive sources of information and support Our paediatrician is an OK lady but she never gave us any support. Other parents help you a lot. I gathered much more information from other parents than from any expert. (Mother of 5-year-old)

  15. Stigma and social exclusion • experience of discriminatory behaviour and stigmatisation • other people need to understand “that (autism) is not a contagious disease, that that is not a reason you should separate your children from our children…the biggest challenge is society and lack of understanding” (Mother of 10-year-old). • their children were excluded from peer group social activities such as birthday parties – “they would invite the whole class, except him…” • their children’s experiences of bullying and abuse from their typically-developing peers. • This boy was abusing him, psychologically and physically. There were bruises. I saw a kid stab a pencil into his back. (Father of 13-year-old)

  16. Concerns about the future • systemic shortfall within Croatia with regard to support and services for adults on the spectrum (Vragović, Frey Škrinjar, & Masnjak, 2015) • parents voiced their fears about what would happen when they were no longer there to advocate for and care for their children Many parents are scared of the future. The system in Croatia doesn’t provide care for young children or adults that have autism either…The problem is that I won′t live forever. (Mother of 5-year-old) I am always afraid of how it will be when we are gone, I mean… in the future. (Father of 13-year-old)

  17. Supportingfamilies Parenteducation Supportgroups Support to siblings Parenttraining Psychologicalsupport Support to grandparents Socialnetworks Respite …

  18. Supportingfamilies – parenteducation

  19. Why does parent education in autism matter? • Effective parent education for families living with autism has been shown to have positive effects: • Helps parents to understand their children • Helps to reduce stress in the family • Improves skills – supports the child’s learning, as well as family functioning • Improves social, educational and economic outcomes for those with autism and their families • Early intervention through parent education • can reduce need for long term dependence on external support • Less costly than other models of support • Can reduce economic impact as well as improving quality of life and opportunities

  20. Why does parent education in autism matterin Croatia? • Earlyinterventionservices • notembeddedinthe system ofsupport, • mainlyprojectbased • notavailable for allchildren • Expensive – organizedthroughprivatesector • Support for families • Notdeveloped • Ifitexists - focusis on improvingskillsofthechildnotempoweringparents 2015-1-UK01-KA204-013397

  21. Why does parent education in autism matterin Croatia? • Lackofsupportgroups for parentsandfamilies (siblings) • Parentsoftenrely on informationfromthe internet andpromisesofthe cure • Professionals • Some professionalsstilldon’thaveenoughknowledgeabout ASD • Lackofprofessionalsofeducationandrehabilitationprofilesindistantareas • Educationcanlead to empoweringparents, increasingtheirconfidence – they are theexperts for theirchild 2015-1-UK01-KA204-013397

  22. Parent education – Benefits and problems • Range of parent training models in existence • Some based on specific approaches (e.g. TEACCH, ABA) • Some more eclectic (e.g. NAS EarlyBird) • Research shows: • Parent training about autism is valued by parents • Can reduce parental stress • Benefits can be maintained over time • But… • Problems with attendance, child care, waiting times, access, distance, intrusiveness • Generally based on US/UK models – unavailable in / inappropriate for other settings, such as SE Europe 2015-1-UK01-KA204-013397

  23. What is ESIPP? • 3 year project running from September 2015-August 2018 • Funded by the European Commission Erasmus+ Programme – Key Action 2 Strategic Partnership. • Focus – parent education for parents of children on theautismspectrum 2015-1-UK01-KA204-013397

  24. Associated partner from Croatia 2015-1-UK01-KA204-013397

  25. ESIPP – Objectives of the partnership • Develop an evidence-based model for delivering parent education in autism • Develop a core curriculum and locally appropriate parent education training materials • Use these materials to provide parent education to Croatian, Cypriot and Macedonian families living with autism • Evaluate the effectiveness of the materials and the impact of the training using quantitative and qualitative data collection and analysis • Share the model curriculum, tools and materials with stakeholders and make recommendations to policy- and decision-makers across Europe 2015-1-UK01-KA204-013397

  26. Developing the curriculum • Initial draft parent training curriculum has been developed • informed by review of the literature and a survey of families living with autism in Croatia, Cyprus and the FYR of Macedonia • Curriculum comprises 6 core modules • Introduction to autism • Using structure and visual supports • Sensory sensitivities • Communication • Social development and interaction • Understanding and managing challenging behaviour • Also extra modules on specific issues (e.g. eating, sleeping, puberty) • Approx. 12 hour education programme– Positive Approaches to Autism

  27. Modules Were Designed to: • Aid and grow an understanding of the autistic condition • Introduce a range of strategies that can be implemented to help address some of the many needs these children and their families face • Present the latest best practice as recognised by autism practitioners and experts in the field. • Develop parental confidence - assisting them in making and implementing self-help strategies that will go some way toward easing the great demands that caring for children with autism requires 2015-1-UK01-KA204-013397

  28. Non-Core Modules • The parent survey and contact with families in the 3 countries identified a number of ‘non-core’ topics in which some parents were interested • These trainings were trialled, and identified as ‘optional’ non-core training for parents and localities that were interested in the topic areas. • Subjects included: Puberty, Eating Issues and Sleep. 2015-1-UK01-KA204-013397

  29. Module 1: AN INTRODUCTION TO AUTISM SPECTRUM DISORDERS • establish a common understanding and knowledge about Autism Spectrum Disorders • help parents understand the unique profile of differences, strengths and difficulties for their child 2015-1-UK01-KA204-013397

  30. Module 2VISUAL STRUCTURE AND VISUAL SUPPORT To develop an awareness of the different types of visual structure: • Physical (the environment) • Schedules (what to do and when) • Work systems (how to do it, breaking down an individual task into visual steps) • Visual prompts (objects, photos, pictures and words) 2015-1-UK01-KA204-013397

  31. Module 3MANAGING SENSORY SENSITIVITIES • To identify the 7 senses and how hyper and hypo sensitivity can present. • To understand how sensory differences can impact behaviours. 2015-1-UK01-KA204-013397

  32. Module 4EXPLORING COMMUNICATION • To learn strategies for supporting communication and communication development. • To practice different communication methods for non-verbal children such as picture exchanges and simplified sign language. 2015-1-UK01-KA204-013397

  33. Module 5POSITIVE APPROACHES TO SOCIAL DEVELOPMENT AND INTERACTION • To develop an understanding of the social differences associated with the autism spectrum. • To explore practical strategies that aid the development of play and social skills. • To learn how to use use everyday materials to foster and encourage social interaction in their children. 2015-1-UK01-KA204-013397

  34. Module 6UNDERSTANDING AND MANAGING CHALLENGING BEHAVIOUR • To explore the underlying reasons for • To identify practical strategies to prevent, manage and de-escalate challenging behaviours. This session brings together the knowledge and understanding developed in previous sessions to identify these strategies (e.g. visual prompts). 2015-1-UK01-KA204-013397

  35. Evaluation process • Pre-training, post-training and follow-up parent questionnaires • Interviews with sample of parents • Trainer reflective diaries • Trainer focus groups 2015-1-UK01-KA204-013397

  36. Impactof ESIPP parenteducation

  37. Impactof ESIPP parenteducation

  38. Some feedbackfromparentsandtrainers • Itis a lotofinformationintwodays • Some ofthesessionsweresuited for more ableindividuals • Itwouldbegreatifparentscanhaveindividualsessionsinwhichtheycan talk abouttheindividualchild • Session on challengingbehaviourshouldbethelastsession 2015-1-UK01-KA204-013397

  39. Some feedbackfromparentsthatattendededucationsessionsin Croatia • „I wish I had theopportunity to attendthiseducationwhenmychildwasdiagnosedwith ASD” • „Educatorsweregreat! Theyofferedsomanyexamplesthatmade me thinkaboutmychildandways to helphim” • „I realizedthatvisualsupportisveryimportant…we are usingitnowanditreallyhelpshim to understand…” • „I reallylikedwhenwe had opportunity to askaboutourchildrenandaboutspecific problem sotheyshowedus how to communicatewiththem…” • „Spending time withotherparentswasreallyvaluable for me, wecanunderstandandhelpeachotherwithourexperiences” • „I woulddefinitelyrecommendthiseducation to otherparentsandfamilymembers.”

  40. ALL MATERIALS AVAILABLE ON ESIPP WEBSITE: • www.esipp.eu

  41. WHAT WE TOOK FROM THAT EXPERIENCE

More Related