Autism is a neurodevelopmental difference that is estimated to affect around 1% of the population (Baird et al., 2006). Autistic Spectrum Condition (ASC) impacts 3 main areas of functioning: social interaction, communication, and restricted behaviour patterns. In a neurotypical world, not designed to meet the needs of autistic people, it can have an impact on a child’s social development (Le Couteur et al., 2003). In order to address the negative impact, this can have, the UK National Autism Plan for Children has advocated the need for early intervention (Le Couteur et al., 2003). The National Institute for Health and Care Excellence (NICE) recommends the use of interventions, carried out by caregivers or preschool teachers (NICE, 2013).
Parent-led interventions (PLI) for ASC tend to focus on 3 main areas:
- the core symptoms of ASC,
- the associated issues that often accompany it such as challenging behaviour and poor sleep, and
- parental stress and coping strategies.
A Cochrane Review of existing evidence has shown that parent-led interventions can have a positive impact on young children with ASC (Oono et al., 2013). Similar findings were reported on PLI delivered through self-guided websites which demonstrated an improvement in social behaviour and communications skills (Parsons et al., 2017). Unfortunately, in both cases, the lack of common outcome measures limited the validity and applicability of the research (Oono et al., 2013; Parsons et al., 2017). A larger, therefore more reliable (Black et al., 2018) study exploring Parent Training (PT) suggested benefits for parents with improved ability to manage behaviours leading to a reduction in stress (Dawson-Squibb, 2020). Group-based training was found to be especially effective as it provided social support for parents (O’Donovan, 2019).
Research into the managing of the problematic behaviours associated with ASC has led to parent-led Functional Communication Training (FCT) being introduced as evidence-based practice (National Autism Centre, 2015). FCT involves parents or caregivers identifying the purpose of challenging behaviour, teaching an alternative way of communicating this need and rewarding this by providing the requirement, whilst withholding this when problematic behaviour is used (Tiger et al., 2008). Across a number of studies FCT has been shown to reduce challenging behaviour (Gerow, 2018), however, there is yet limited information as to how closely parents followed the programme or the long-term impact (Gerow, 2018).
Due to the lack of evidence, it is difficult to accurately assess the reliability and validity of data about parent-led interventions for autism. The aim of a recent systematic review and meta-analysis is to evaluate and compare interventions (Deb et al, 2020). The review focuses on the effectiveness in addressing the core ASD symptoms, associated problematic behaviours, and parental stress.
Four electronic databases including CINAHL, EMBASE, MEDLINE and PsycINFO were searched for randomised controlled trials that evaluated the effectiveness of training for parents of children with Autistic Spectrum Condition (ASC). The quality and risk of bias within the studies were closely monitored from the outset using a Cochrane checklist (Higgins & Thomas, 2019).
Using the following criteria, 17 papers of 15 studies were selected:
- Participants in the intervention group were all parents of children with a formal diagnosis of ASC
- Training, group or individual, was provided by trained professionals, and support was provided after, either in person or remotely
- Studies needed to have measurable outcomes including ASC core symptoms such as:
- social interaction
- communication problems
- behavioural concerns including repetitive or restricted patterns of behaviour
- obsessive or restricted interests or activities
- sleep problems
- Parental coping skills and stress levels needed to have been measured.
The interventions focused on functioning in 3 areas:
1. Language and communication
Three different programmes focused on improving language and communication:
- Social Pragmatic Joint Attention Focused Parent Training (Drew et al., 2002; Oosterling et al, 2010),
- Pivotal Response Treatment [PRT] (Gengoux, 2019; Jocelyn, 1998; Nefdt, 2010), and
- Early Start Denver Model, (Rogers et al., 2012).
All programmes showed promise in improving the trajectory of language development for autistic children but PRT training was found to be particularly effective. This was due to increasing parents’ confidence in supporting their children, which in turn led to greater improvement in their communication (Gengoux, 2019 Nefdt, 2010). The Early Start Denver Model, a form of PRT programme also revealed good results (Rogers, 2012).
2. Interaction and play
The studies demonstrated that preschool children using DIR/Floor Time™ made significant improvements in their functional emotional capacities when it was used for around 15 hours a week for 3 months. A further reported benefit was improved parenting skills leading to reduced stress (Ho et al., 2020; Pajareya & Nopmaneejumruslers, 2011).
3. Behaviour management
Some RCTs focused specifically on parent training for autistic children who display disruptive behaviour (Bearss, 2015). Throughout the training, parents were taught behavioural strategies to use with their child which led to a 47.7% improvement on the Aberrant Behaviour Checklist-Irritability (ABC-I) subscale (Amann, 1985), a 55% improvement on the Home Situations Questionnaire-ASD (Chowdhury et al., 2010), and a 68.5% improvement on the Clinical Global Impression-Improvement (CGI-I) scale (Guy, 1976).
Parental education which ran alongside the behaviour management intervention also proved to be effective, with the positive impact still being demonstrated in the 6-month follow-up (Tellegen, 2014; Tonge, 2014). This is supported by other psychoeducation programmes which have also reported lasting behavioural benefits (Sofronoff, 2002) and improvements in problematic sleep (Marlow et al., 2014). Monitoring of child body movement along with parental questionnaires revealed improvements in both insomnia and time taken to get to sleep. This is significant as sleep-related problems are common in children with ASC and can have an impact on behaviour. Education, delivered through workshops and home visits, also demonstrated high levels of success in reducing parental stress. Increased knowledge and understanding of ASC, led to increased feelings of competence and less stress and strain (Jocelyn, 1998; Keen et al., 2010; Iadarola et al., 2018).
Overall, the results show that there are clinically significant positive outcomes when comparing the parent-led interventions with the control group. DIR/Floortime™, Parent Focussed Training, and Pivotal Response Training Forest all demonstrated improvements in Autistic Spectrum Condition (ASC) core symptoms, including associated challenging behaviour, alongside a reduction in parental stress.
It is difficult to make comparisons between the interventions due to differences in the design of the studies. It is also important to remember that autism is a spectrum disorder and children have different strengths and weaknesses.
It is, therefore, suggested that Parent Training needs to be fine-tuned to the child’s profile to be most effective.
Strengths and limitations
The review of the evidence was comprehensive and well-conducted. However, the differences in the nature of the interventions, delivery methods, timeframe, variation in the type of intervention received by control groups, and differences in follow-up, create a difficulty to draw any meaningful conclusions. All the trials relied heavily on tools to measure the impact of interventions which makes it difficult to assess the parental experience of the training and their perceptions of its impact.
Implications for practice
The review supports evidence that there is much potential for training parents of autistic children in order to educate and equip them with the knowledge and skills necessary to help support their children. A common feature in response to the training was that knowledge of what to expect and how to respond enabled them to respond with confidence, leading to less stress. This suggests that education about areas of the spectrum and training on methods to effectively manage these, would be helpful, this is especially the case with problematic behaviours and sleep disturbance.
Standardisation of what is meant by ‘parental training’ would help clinicians make meaningful comparisons about the changes required in practice. Qualitative research on parental experiences would help to highlight the aspects of training that are most needed, so that an assessment of their clinical and economic effectiveness could be made.
Conflicts of interest
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