Review of literature and information related to the perspectives of young children with ASD and their families.

Grandparents Margetts et al, (2006) identified 3 areas relating to the perspectives of grandparents with grandchildren on the autistic spectrum: 1. A strong bond between the grandparent and both their adult child and grandchild with ASD 2. A desire to learn more about ASD 3. A responsibility to keep the family positive and together Interviews with 15 sets of grandparents by Oxford University researchers in the UK (Health Experience Research Group., n.d.) reflected these categories as well as highlighting the spectrum of these perspectives. Grandparents reported wanting to be involved with their grandchild but this involvement was often limited due to the socialisation skills of the child. Support for the adult child was demonstrated through: standing by decisions made regarding the grandchild, offering the parents breaks by caring for the grandchild either in their own home or the childs home and being there whenever help was needed. Grandparents felt that having a grandchild with ASD had increased their understanding of ASD. All the grandparents interviewed expressed a desire to learn more about ASD and this was achieved through a variety of ways including reading research, reading true life accounts, forming support groups, getting involved with other grandparents of ASD children, speaking to professionals and speaking to schools. This search for knowledge in many cases also developed a support network including others in a similar situation and close friends. Grandparents often expressed concern or guilt over spending a disproportionate amount of time with the grandchild with ASD compared to both their other siblings and to the families of the other adult children. Another common concern was what would happen when the grandparents were no longer there to support their adult child. Some grandparents reported guilt regarding the possible genetic etiology of ASD and their part in this. They were sadden by the whole family not being able to take part in normal family experiences and also concerned about the physical and emotional stress experienced by their adult child and their partner. A lack of understanding by health professionals and the general public was cited as a cause of frustration and anxiety. Many grandparents reported feeling devastated, shocked or in denial when receiving the initial diagnosis for their grandchild but then took on the role of being positive for the whole family, often reporting on the family becoming a much stronger unit.
Specialist Teaching Theory and Foundations of Autism Spectrum Disorder Tracy Watkin

The NZASD Guideline recognises the important role played by many grandparents of children with ASD and the necessity to consider their perspectives and needs information, support and services are essential to help grandparents cope.(Ministries of Health and Education, 2008, p.68) Siblings In her article in Time Ideas, Cain (2012) refers to the siblings of ASD children as the invisible victims. Research involving individuals with siblings on the autistic spectrum again shows a range of perspectives (Dillenburger, 2012; Glasberg, 2000). In comparison to siblings of other intellectually handicapped children siblings of children with ASD experienced more embarrassment in front of peers and had a more negative view of their relationship with their ASD sibling. Compared to their peers, siblings of ASD children reported higher incidences of feeling neglected, lonely, having fewer friends and being worried about the future. They played less with their ASD sibling, reported higher frequencies of their sibling breaking or disturbing their belongings and they worried more about the future. Labato (1990, as cited in Wheeler, 2006) examined the perspectives of individuals with siblings on the autism spectrum and saw them as a continuum ranging from anxiety, anger, jealousy and the responsibility of being a carer through to an increase in patience, acceptance, confidence and caring. Real-Life stories from siblings of ASD children (National Autistic Society, 2013) reflect a continuum of perspectives that corroborate current research. Individuals worried about being unkind to their ASD sibling or losing patience with them. They expressed regret at never being able to have a regular sibling relationship where they could share secrets and have a close, supportive friendship and sometimes reported jealousy of siblings in regular families. They also reported being bullied by their peers because of their sibling with ASD. These individuals were very aware of their role as a protector and carer for their ASD sibling and how this role would be magnified in the future when their parents were no longer there. However, many reported how having a sibling with ASD had enriched their lives making them much stronger, resilient and more knowledgeable. They often had become passionate advocates for their brother or sister. Some siblings reported being unable to accept their ASD sibling due to the lack of attention they themselves received from their parents and the loneliness they experienced. A fear for the future of their own children was evident amongst the individuals interviewed as they were aware of the genetic etiology of ASD.

Specialist Teaching Theory and Foundations of Autism Spectrum Disorder

Tracy Watkin

The NZASD Guideline recognises the unique situation and responsibilities of these siblings and recommends they have .an opportunity to learn about ASD and access to sibling support groups (Ministries of Health and Education, 2008, p.67).

Parents There is significant agreement that having a child with ASD places additional stresses on parents (especially mothers), families and whanau (Ministries of Health and Education, 2008, p.64). Current research (Dillenburger, 2012; Glazzard & Overall, 2012) recognises that support for parents of children with ASD comes mainly from friends or family and that parents perceived a lack of information from professionals and agencies. Parents felt that diagnosis was a long drawn out procedure and securing help following diagnosis took an enormous amount of time, effort and in some cases money, resulting in significant stress and possibly depression. Keen (2007) reported that parents were happier if they were able to actively help their child and advocate for them and were aware of the resources available. Parents wanted to have a trusting, respectful, honest relationship with professionals where they had a significant input into what was happening to their child. Parents felt more included and in control if planning, goal setting and decision making were done through a strong parent-professional collaboration. Glazzard and Overall (2012) conducted a series of interviews and questionnaires with parents of children on the autistic spectrum. The results corroborated the above findings as well as raising other considerations. Parents lack of sleep due to their childs abnormal sleep patterns could result in additional stress and depression. A decline in the quality of parents relationships with friends and family as well as their social life led to a decrease in respite time and support. Many parents adapted their daily routines to fit the needs of their child and avoided social situations also resulting in high levels of stress. Parents had experienced a lack of understanding from outsiders and the siblings of the ASD child had often been bullied by peers, another source of anxiety. Parents sought support mostly through family, support groups and religion. Other interviews with parents of ASD children (National Autistic Society) reported parents feeling relief when receiving a diagnosis but they found the battle for support tiring, stressful, drawn out and frustrating. Evidence from current research and individual accounts, points strongly to there being insufficient support for children on the autistic spectrum and their families.

Specialist Teaching Theory and Foundations of Autism Spectrum Disorder

Tracy Watkin

Young Children with ASD Gaining an insight into the perspectives of young children on the autistic spectrum is a very real challenge. Preece and Jordan (2010) listed anxiety, impaired social skills, over selectivity, visual supports used, and personal preferences as barriers to collecting this information. Despite these barriers they conducted a study of 7 to 18 year olds which grouped the perspectives of the children into 4 distinct areas: 1. A positive attitude to their family and home life 2. A lack of awareness as to how their autism affected their family 3. A desire for activities which did not involve interactions with others and very rarely meeting a school friend outside of school 4. Problems at school including bullying from peers, noisy environments and difficulty understanding teachers Research with 10, 11 and 12 year old children on the autistic spectrum (Girli & Atasoy ,2012.) reported children with ASD feeling isolated, often not being chosen for groups and being bullied. These behaviours all increased in intensity and frequency during break times. Despite the challenges of accessing the perspectives of children with ASD we are reminded of our responsibility to endeavour to achieve this by the UN Convention of The Rights of The Disabled Person , article 7.3 children with disabilities have the right to express their views freely on all matters affecting them. (The United Nations Childrens Fund, 2007). Conclusion The family-centred approach that is currently being advocated as best practice for a familyprofessional partnership necessitates an understanding of the perspectives of all family members involved with the child. Gathering information regarding these perspectives is a vital part of establishing a relationship based on understanding and trust and a collaboration that is working together for the good of the child.

Nau te rourou, naku te rourou Ma te kotahitanga o te tangata ka whai hua. Your basket and my basket, together we make a difference.

Specialist Teaching Theory and Foundations of Autism Spectrum Disorder

Tracy Watkin

References
Real life stories from siblings. (2013). Retrieved from National Autism Society: http://www.autism.org.uk/Living-with-autism/Real-life-stories/Real-life-stories-fromsiblings.aspx A, G., & Atasoy, S. (2012). The views of students with intellectual disabilities or autism regarding their school experience and their peers inclusion. Buca Faculty of Education Journal, 32, 1627. Cain, B. (2012, November). Autism's invisible victims: the siblings. Retrieved from Time Ideas: http://ideas.time.com/2012/11/30/autisms-invisible-victims-the-siblings/ Diillenburger. K., K. M. (2010). Living with children diagnosed with autistic spectrum disorder: Parental and professional views. British Journal of Special Education, 37(1), 13-23. Education, M. o. (2008). New Zealand Autism Spectrum Disorder Guideline. Wellington: Ministry of Health. Glasberg, B. A. (2000). The Development of sibling's understanding of autism spectrum disorders. Journal of Autism and Developmental Disorders, 30(2), 143-156. Glazzard, J., & Overall, K. (2012). Living with autistic spectrum disorder: Parental experiences of raising a child with autistic spectrum disorder. Support For Learning, 27(1), 37-45. Having a granchild on the autism spectrum: People's stories. (n.d.). Retrieved from healthtalkonline.org: http://www.healthtalkonline.org/Autism/Autism_Grandparents/People/Stories JK Margetts, A. L. (2006). Families in a state of flux: The experience of grandparents in autism spectrum disorder. Child: Care, Health and Development, 32(5), 565-74. Keen, D. (2007). Parents, families and partnerships: Issues and considerations. International Journal of Disability, Development and Education, 54(3), 339-349. Preece, D., & Jordan, R. (2010). Obtaining the views of children and young people with autism spectrum disorder about their experiences of daily life and social care support. British Journal of Learning Disabilities, 38, 10-20. Silverman, C., & Brosco, J. P. (2007). Understanding autism: Parents and pediatricians in historical perspective. Archives of Pediatric and Adolescent Medicine, 161(4), 392-398. Wheeler, M. J. (2006). Siblings Perspectives: Some Guidelines for Parents. Reporter, 11(2), 13-15.

Specialist Teaching Theory and Foundations of Autism Spectrum Disorder

Tracy Watkin