Descriptive themes derived from the anlaysis, organised into broader conceptual themes, are presented below, with illustrative exemplars drawn from studies. Themes are summarised in Supplementary Table 4, and references provided for studies reporting exemplars associated with each sub-theme.

Accommodating the Child

Parents reported adapting routines to accommodate the child by following the child’s ‘unique rules’ for how things should be done (e.g., Ausderau and Juarez 2013). This involved accepting the child’s preference for sameness (e.g., providing the same meal each night; Bagatell 2015), and following precise sequences of actions: “He [Bob] has a particular round pillow, and then he has another pillow, and then he has his blankets up and I put the pillow over the top. But before he snuggles in, I have to have a drink of water ready to go because if I don’t he screams out for water when I am gone. So he has the smallest sip of water... and then he lies down and if I don’t have the pillow there he screams for that too.” (Marquenie et al. 2011, p. 151). Parents avoided doing things that the child disliked, which were likely to provoke problem behaviour (e.g., not talking to their older daughter when the younger daughter with a disability was present; Lucyshyn et al. 2004).

Parents planned activities to accommodate the child to reduce the risk of problem behaviour (e.g., Farrugia 2009; Fletcher et al. 2012). This included doing things at the time of day when the child functioned best, attending events when they were less crowded (Fletcher et al. 2012; Schaaf et al. 2011), and locating activities of interest to the child in advance of outings (e.g., Larson 2006).

Parents reported adjusting expectations depending on the child’s mood (e.g., Larson 2006; Foo et al. 2015). For example, after a day at school, parents reduced demands to allow for the fact that the child’s energy levels were depleted (Fletcher et al. 2012). Parents also adapted behavioural goals so that they were achievable (Gray 2003), and gave extra time to complete tasks (Safe et al. 2012). They took cues from the child when deciding whether to pursue an activity: “[We will] get up in the morning. See what he’s like when we get up and then we’ll make plans of what we’re going to do.” (Gray 2003, p. 638). They also took the child home early if they seemed to be finding it hard to cope during outings (e.g., Fletcher et al. 2012).

Parents reported setting priorities and picking battles when deciding whether to insist on things to manage the risk of outbursts and difficult behaviour (e.g., Safe et al. 2012; Larson 2006; Farrugia 2009; Marquenie et al. 2011). They also gave latitude with regards to rules and expectations that applied to other family members, e.g., excusing the child from sitting at the table to eat with the family, or allowing the child to withdraw or engage in repetitive calming behaviours in public (Ausderau and Juarez 2013; Bagatell 2015; Marquenie et al. 2011; Larson 2006).

Parents reported reducing demands when problem behaviour occurred (e.g., Ausderau and Juarez 2013; Marquenie et al. 2011): “Three parents independently stated that attempting to enforce routine related demands on their child by not backing off in the face of problem behavior would only exasperate stress levels in the home and might lead to the break-up of the family (e.g., seeking out-of-home placement for the child).” (Lucyshyn et al. 2004, p. 15). Parents also gave in to the child’s demands for activities or attention to reduce the likelihood of extreme disruption (e.g., Lucyshyn et al. 2004; Divan et al. 2012; DeGrace 2004; Koydemir-Özden and Tosun 2010; Pengelly et al. 2009): “If the child wants to get into the car and have a ride, you must do it, otherwise he gets ill-tempered, yells at midnight, you won’t believe it, one night I had to drive him around from 01 till 04 in the morning, then I slept for 2–3 h and went to work.” (Aylaz et al. 2012, p. 399).

Modifying the Environment

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). In particular, parents avoided events that were over-stimulating, or which involved feared stimuli (e.g., Bagatell 2015; Schaaf et al. 2011; Neufeld et al. 2014). They also avoided new or different environments (Mount and Dillon 2014).

Parents reported limiting social activities and outings with the child (e.g., shopping, visiting restaurants; Divan et al. 2012; Gray 2003; Myers et al. 2009, p. 680). They avoided taking the child to friend’s houses or family events, or strictly controlled the time they spent there: “It’s 1 h max; otherwise, it can be a disaster.” (Bagatell 2015, p. 55–56). Frequently, the child’s difficulty tolerating novel environments resulted in one parent staying at home with the child (e.g., Preece and Almond 2008), reducing the risk of an outburst or behaviour that others would find annoying or distressing. Avoiding outings altogether accommodated the child’s preference for sameness: “We stayed home most of yesterday. We couldn’t go out anyway because it’s his routine. Couldn’t leave the house” (Hodgetts et al. 2013a, p. 2579).

Providing Structure, Routine and Familiarity

Parents reported sticking to fixed routines to manage daily activities (e.g., mealtimes, bedtimes, bathing, dressing etc.; Larson 2006). This reduced the likelihood of the child encountering novel or unexpected stimuli, and thus the risk of an outburst (Schaaf et al. 2011). Routines were also used to help the child transition from one activity to another (Kuhaneck et al. 2010). Families were motivated to stick to routines to reduce the risk of problem behaviour: “His father...hadn’t poured his glass of milk yet [for breakfast] and Nathan just decided that [his dad] had ruined his whole day. … He [didn’t understand that his dad] doesn’t know automatically that he needs a glass of milk…You have to ask [Nathan] if he wants a glass of milk and let him say “yes.” Because if you don’t ask him, then he gets mad when you give it to him…It’s like a dance.” (Larson 2006, p. 73).

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 used picture schedules or lists to inform the child about upcoming activities, so that they knew exactly what to expect: “Being able to talk your child through the steps, like you said, through a white board or, for my child who’s nonverbal, being able to write it out for him so he can see exactly what’s going to happen, we’re going to have to drink something before we can leave, we need to do this.’’ (Johnson et al. 2014, p. 389). Schedules could also reduce anxiety in non-routine situations (e.g., in a hospital setting): “[…] she [the nurse] learned that this child was high functioning and cognitively aware of his pain and the management of it, but obsessed with wanting to control his pain medications. With the father’s input, the nurse developed a schedule of times for medication administration, nursing procedures, meals, and any lab or procedural studies being planned for the next 24 h.” (Scarpinato et al. 2010, p. 252). Visual reminders were also used by parents to facilitate performance of daily routines and transitions between activities (e.g., Clarke et al. 1999; Fettig et al. 2015).

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”. And I said, “All you have to do is say hello to them and then you can go wherever you want to go”” (Gray 1997, p. 1101). This sometimes involved using “social stories” or scripts to model the steps of an activity, or showing the child pictures of new people or places to increase familiarity (e.g., Ludlow et al. 2012; Johnson et al. 2014). Advance notice was essential in helping the child tolerate new things: “[…] if we have to, on the spot, break it to him that, no, there’s somebody else you have to see, every point is a trigger point for a massive meltdown’’ (Johnson et al. 2014, p. 389).

Parents attempted to keep things as predictable and familiar as possible e.g., avoiding having visitors in the home when the child was around (e.g., Ludlow et al. 2012; Larson 2006), and giving adequate warning before transitions (Kuhaneck et al. 2010; Safe et al. 2012). Familiarity was perceived as helpful reducing problem behaviour: “He tends to do best with well-practiced activities and activities that he does within the context of a structure and with people and an environment that he’s familiar with […] when it’s not a practiced skill or he’s not given that structure, and/or he doesn’t understand what’s going on, then we will see a spike in sort of negative behavioral issues.” (Johnson et al. 2014, p. 389).

Parents reported that introducing new things gradually helped the child to cope: “When he tries something new, the first time he is going to be really mad, the second time he is going to be a little pissed but he is going to do it, and the third time he does it, it is fine.” (Stoner et al. 2007, p. 30). Introducing things step-by-step, e.g., visiting places ‘just to look’ before any demands were placed on the child (Stoner et al. 2007) gradually built up their tolerance, which in turn increased their repertoire of activities: “Two years ago, we couldn’t go to the beach... [He screamed] like you were skinning him...he couldn’t deal with the sensory things, the sand, the sun, the noise of the waves. He would literally hide under a blanket… So we would have to take him home… I knew it was torture for him, but [gradually we’d go back] for just a half hour [and then] go home… Now he loves the beach... we can go to the beach.” (Larson 2006, p. 76).

Supervision and Monitoring

Parents reported needing to supervise their child at all times (e.g., Zhou and Yi 2014; Fong et al. 1993; Myers et al. 2009): “If we’re lucky, he gets up at 6, and if we’re not you get up at 3, 4… And the minute he’s up, you’re on… Keep him in [the house]. Try to feed him … make sure he’s entertaining himself in a quieter way” (Larson 2010, p. 20). Supervision was required to ensure timely parental intervention, particularly when out in the community: “Someone needs to be monitoring his behavior at all times. …What’s going to make another mom say ‘Get your rotten kid away from my kid!’? You kind of have to gauge that.” (Schaaf et al. 2011, p. 383). Supervision was also necessary during routines to compensate for difficulties remaining on task (e.g., Larson 2010).

Parents described needing to stay alert and ready to intervene: “You always have to be there. To avoid damage, you have to grab him, and you have to be super fast.” (Hodgetts et al. 2013b, p. 169). Vigilance was particularly important in potentially uncertain situations, such as when out in the community or interacting with others (e.g., Fairthorne et al. 2014), to mitigate the risk of problems: “We go to family get-togethers, and their kids just run around, the parents are drinking wine and not paying attention, and the two of us, they’re like, ‘you need to relax.’ We can’t. We literally have to be there around our kids for safety.” (Hodgetts et al. 2013b, p. 169). Vigilance was also required in potentially dangerous everyday situations (e.g., when the child had access to cutlery, or when travelling by car, Bourke-Taylor et al. 2010).

Indicators of the child’s stress and emotional state were a particular target of parental vigilance (e.g., Larson 2010). Parents reported making an effort to keep the child’s mood stable (e.g., Sabapathy et al. 2016; Larson 2010): “Well, it is almost like a home with an alcoholic. You walk around on eggshells because you do not want to possibly upset them in anyway. It is just that you are walking on eggshells 24 h a day.” (Woodgate et al. 2008, p. 1079). Extra effort was required in new or potentially problematic situations: “I can’t go blindly into any situation … You really have to kind of do a quick overview of the situation knowing what’s going to bother whom.” (Larson 2010, p. 23).

Managing Non-Compliance with Everyday Tasks and Activities

Parents reported intervening to assist the child with daily activities, such as dressing (e.g., Clarke et al. 1999; Blair et al. 2011): “David would often lie on his bed looking at the ceiling or wall while holding the clothing in his hand until his mother came in to help him. His mother reported that David was physically capable of dressing himself and would often do so quickly before going to a preferred location such as a park.” (Bailey and Blair 2015, p. 224). Parental intervention reduced performance demands and thus decreased the risk of frustration-related problem behaviour: “Her parents reported that as a result of Katherine’s problem behaviors, they had to do everything for her, including dress her, feed her, and help her complete daily hygiene tasks.” (Lucyshyn et al. 2007, p. 133).

Parents also gave the child repeated cues to do things, including verbal reminders and physical prompts (e.g., Hampshire et al. 2016; Neely-Barnes et al. 2011). They used strategies when making demands to reduce the likelihood of non-compliance, e.g., linking activities to the child’s special interests (Larson 2006), tricking the child (Larson 2006; Cullen and Barlow 2002), or giving choices (Larson 2006; Johnson et al. 2014). Gentle persuasion was also used to coax the child into doing things (e.g., “David, a father of a 10-year-old girl with autism, explained how his child would sit down and refuse to be moved: ‘‘Sometimes I have to wait it out and try to coax her.””) (Neely-Barnes et al. 2011, p. 214).

Parents reported using reward systems (e.g., positive behaviour charts), and bargaining to motivate good behaviour and compliance with daily activities (e.g., Bagatell 2015; Dunlap et al. 1994; Fong 1993): “He has to take two bites of a non-preferred food and then reward him with a preferred food. So you know, it’s not like the most relaxing dinner” (Schaaf et al. 2011, p. 381). They also praised the child for appropriate behaviour (Agazzi et al. 2013; Armstrong and Kimonis 2013).

Parents reported persisting with routine demands despite the child’s protests, using a variety of strategies: “Michael would often kick and scream when asked to comply with morning activities […]. The family would continue to deliver verbal demands to comply with activities and would try to ‘‘get him out of the bad mood’’ by tickling or chasing, eventually reverting to yelling, holding him down if he was kicking excessively, or leaving him alone and trying again a few minutes later.” (Sears et al. 2013, p. 1010).

Responding to Problem Behaviour

Parents reported that distracting the child with activities could divert them from problem behaviour (e.g., Cullen and Barlow 2002; Fettig et al. 2015), and pre-empt outbursts in challenging situations (e.g., Sears et al. 2013; Weiss et al. 2014). Distraction often involved specific activities or items: “[…] each family had developed their own “must have” items. For all the families, technology played a key role. Phones, tablets, and other hand-held devices were common items for families to have charged and ready for an outing.” (Bagatell 2015, p. 55). Children could also be given a task or responsibility (e.g., pushing the trolley in a shop, Schaaf et al. 2011). At home, families put videos on for the child to pre-empt problems and give family members some free time (e.g., DeGrace 2004; Marquenie et al. 2011).

When the child became difficult, parents reported attempting to ignore their demands (e.g., saying “No”, ignoring requests to go to particular places) (e.g., Bailey and Blair 2015; Marquenie et al. 2011), and avoided drawing attention to difficult/inappropriate behaviour in public (e.g., Neely-Barnes et al. 2011; Gray 1993).

Parents reported explicitly teaching the child what is appropriate behaviour, providing verbal explanations and social stories (Armstrong and Kimonis 2013; Ökcün and Akçin 2012; Beer et al. 2013). They gave verbal reprimands in response to problem behaviour (e.g., saying “Don’t”, “Stop”) (e.g., Blair et al. 2011; Dunlap et al. 1994; Gray 1993; Johnson and Whitman 1978). They also established boundaries by setting ground rules in potentially difficult situations (e.g., when going into a shop where the child might want to buy things; e.g., Ryan 2010), and gave punishments by removing items or privileges (e.g., Moes and Frea 2000; Hebert 2014; Armstrong and Kimonis 2013).

Parents shouted, yelled and conveyed negative affect in response to aggression or problem behaviour (e.g., Barry and Singer 2001; Vaughn et al. 2002; Bailey and Blair 2015). Time-out was also used (e.g., Agazzi et al. 2013; Armstrong and Kimonis 2013; Blair et al. 2011), though this could prove challenging: “They had tried using time-out but felt that it was totally ineffective with Carrie because she would yell or leave the time-out area.” (Armstrong et al. 2015, p. 7). Parents also reported using physical punishment in response to problem behaviour: “Her father voiced that he came from “old-school” parenting, but had found that spanking and other forms of punishment such as removing items or privileges, had little effect on Carrie’s behaviour.” (Armstrong et al. 2015, p. 7).

Managing Distress

When managing extreme distress (e.g., outbursts, meltdowns), parents attempted to comfort the child by providing additional sensory activities, verbal attention (e.g., telling the child “it’s ok” or asking “what’s wrong?”), or physical attention (e.g., hugs, holding or caressing the child) (e.g., Schaaf et al. 2011; Becker-Cottrill et al. 2003; Bourke-Taylor et al. 2010). They also reported removing the child from the situation (Fletcher et al. 2012; Nadeau et al. 2015), or instructing others to leave the vicinity (Flood and Luiselli 2016) to reduce distress and problem behaviour.

Maintaining Safety

Parents made efforts to physically contain the child to prevent dangerous or destructive behaviour or elopement. This included keeping doors locked and installing motion detectors or other security features so that the child couldn’t leave the house unnoticed (e.g., Myers et al. 2009; Bourke-Taylor et al. 2010; Hutton and Caron 2005; DeGrace et al. 2014). Parents kept the child in a different room away from his/her siblings to mitigate the risk of aggression and injury to siblings (e.g., Gray 1997, 2003; Hodgetts et al. 2013b). They restricted access to valued possessions (particularly those belonging to siblings), or potentially dangerous items (e.g., sharp objects) by installing locks on cupboards and doors (e.g., Hutton and Caron 2005; Bourke-Taylor et al. 2010).

Physical restraint was used to manage aggressive or dangerous outbursts (e.g., Preece 2014): “To actually physically restrain him and not get head butted [is difficult], because, you know, you’ve got his arms, your lying on top of him and he wets his pants and I tell you, it’s a real traumatic experience” (Gray 1997, p. 1104). Restraint was also used to prevent injury to siblings, stop the child running off (e.g. Fairthorne et al. 2014), or curtail dangerous behaviour: “Leonard would engage in problem behavior, such as hitting and kicking his mother or the car, throwing objects at his mother, yelling, hanging out the car window, and not wearing his seat belt appropriately if at all, which often compromised the safety of himself and his mother while driving [...] His mother would respond by yelling at him and physically blocking him or putting him back in his seat” (Bailey and Blair 2015, p. 224).

Analysing and Planning

Parents reported thinking about what brought on an episode of problem behaviour to develop a more strategic response: “Now there is structure [but I] show a greater…respect for his individuality…I’m not, this is the way we do it…because that doesn’t work. My kid is screaming right back at me so it’s not working… Next time see [what] happens. It goes different… I’m going to be a smooth operator. Slide in there and…study the situation.” (Larson 2006, p. 72).

Parents also tried to anticipate problems that the child might have in a situation (e.g., Fletcher et al. 2012; Lasser and Corley 2008). This was considered essential in successfully negotiating outings: “I have to [be] two steps ahead of him every waking moment when I’m not here in this house… I have to plan ahead every step of the way… There is always going to be a meltdown, something he doesn’t want to do” (Schaaf et al. 2011, p. 383). Preparations for outings or events in the community involved making contingency plans: “I knew Kyle was a little iffy so I told my husband that we should sit on the bleacher on the end so that we wouldn’t have to crawl over people in case we needed to leave early. And we did. I took Kyle home and my husband stayed at the game and watched Kelton play.” (Bagatell 2015, p. 55). Having a plan for any eventuality and changing plans immediately if required allowed families to negotiate outings and manage the risk of problem behaviour (e.g., Marshall and Long 2010; Pepperell et al. 2016; Bagatell 2015; Lutz et al. 2012).