Living with Autistic Spectrum Disorders: Families, Homes and the Disruption of Space

Abstract

Geographical perspectives on the relationships between people with Autistic Spectrum Disorders (ASD), their home carers and the nature of domestic space are rare. People with an ASD have high levels of anxiety and a range of behaviours that create challenges for family carers. Interviews with forty carers in Sydney reveal how disruptive behaviours, including being noisy, hyperactive, obsessive and controlling, are very demanding for all carers. Carers have adapted home spaces, restricted and reduced patterns of employment and socialisation, and sometimes avoided the home, altering relationships between parents and other siblings. Home care for people with ASD has reduced the sense of home as a place of relaxation peace and stability, and, while providing a more caring environment for people with ASD, has contributed to the partial institutionalisation of the home.

How do Parents Manage Irritability, Challenging Behaviour, Non-Compliance and Anxiety in Children with Autism Spectrum Disorders? A Meta-Synthesis

“…Parents reported making an effort to limit their child’s exposure to sensory stimuli that they found aversive. This included avoiding using noisy appliances when the child was present and minimising exposure to problematic food items (e.g., Schaaf et al 2011 , Dickie et al 2009 ; Duignan and Connell 2015 ). Parents also attempted to avoid situations (e.g., activities, events, places) that the child found difficult: “There are things that you say to yourself like this is too big, this room, there are too many people here, it’s too loud, we gotta go.” (Schaaf et al 2011 , p. 383).…”

“…Parents also reported providing structure and occupation for their child at all times, in particular during “empty” time (e.g., Turnbull and Ruef 1996 ); “[…] the days that are the hardest are like Monday, the public holiday, because it was raining and we really had to work hard… to keep him occupied” (Duignan and Connell 2015 , p. 203–204).…”

“…Parents informed the child in advance about any changes in routine: “There has to be a long conversation about numerous plans. She has to have routine and scheduling; we have a calendar... but mostly she prefers to repeatedly verbalise what her arrangements are until you all want to scream” (Duignan and Connell 2015 , p. 204). Parents prepared their child for events by giving details in advance (e.g., Johnson et al 2014 ; Bearss et al 2016 ): “Even to get his hair cut, I have to tell him a week ahead… last night I said, “Okay, there are going to be six people here and there’s going to be two kids”.…”

Experiences of parents who support a family member with intellectual disability and challenging behaviour: “This is what I deal with every single day”

“…Families with a member with intellectual disability and challenging behaviour 1 typically face a range of challenges that can include interpersonal violence, destruction of their home and environment, sleep deprivation, high levels of depression and stress, lower quality of life generally and social isolation (Biswas, Moghaddam & Tickle, 2015;Duignan & Connell, 2015;Griffith and Hastings, 2014;Hubert, 2010;Maes, Broekman, Došen & Nauts 2003;Ng & Rhodes, 2018). These families often rely on the assistance of a behaviour support specialist in order to help them meet their family member's behaviour support needs, however in Australia, there is no research into these families' specific contexts.…”

“…While a number of these studies identify the challenges and strains of these families, few show the detail of what family members do on a day-to-day basis to navigate their lives. Duignan and Connell's (2015) study utilising surveys examines how caring for people with autism spectrum disorder (and challenging behaviour) impacts the activities of family carers and their experiences of home. In particular, the study looked at how the care changes family relationships, attitudes to domestic space and the nature of home, and found that the impact was "predominantly negative" (p208).…”