Parents’ views of the National Autistic Society’s EarlyBird Plus Programme

Abstract

Parent training interventions are recommended for parents soon after their child’s autism spectrum condition diagnosis with the aim of improving parents’ psychological well-being and coping, as well as the child’s behaviour. This report explores parents’ views of the EarlyBird Plus Programme through data collected routinely in the post-programme questionnaire. Participants’ reported increased understanding of autism and improvements in their communication with their child and their ability to manage their child’s behaviour. Parents appeared to value the opportunity to meet with other parents, and the programme seemed acceptable to the majority of parents who attended.

Keywords

autism EarlyBird Plus parent training programme post-diagnostic support psychoeducation

Introduction

Parents of children with an autism spectrum condition (ASC) have been found to experience increased levels of stress in comparison to parents of typically developing children or children with other developmental disorders (Dabrowska and Pisula, 2010; Dumas et al., 1991). It is recognised that the process of assessment and diagnosis is a stressful experience (Braiden et al., 2010; Keenan et al., 2010; Mansell and Morris, 2004), and it has been recommended that post-diagnostic support, including parent training, should be offered with the aim of improving parents’ psychological well-being and coping, as well as the child’s behaviour (National Initiative for Autism: Screening and Assessment (NIASA), 2003).

In comparison to parent training interventions for typically developing children, there are currently few well-researched manualised programmes available which are tailored to the needs of this client group (Todd et al., 2010). Positive outcomes have been reported in controlled trials of intensive, parent-mediated early interventions for young children with ASC (e.g. Drew et al., 2002; Solomon et al., 2007). However, psychoeducational parent training interventions, and those aimed at parents of school-aged children, have received less attention. A pre-/post-evaluation of a programme delivered to parents of children aged 5–15 years (n = 79) reported positive outcomes in parent learning, parent satisfaction and perceived changes in child behaviour (Pillay et al., 2011). Sofronoff and Farbotko (2002) found that parents of school-aged children with Asperger’s syndrome reported increased self-efficacy and fewer child problem behaviours after a psychoeducational intervention delivered either as a 1-day workshop (n = 33) or in six individual sessions (n = 36) in comparison to a control group (n = 20). Group programmes are thought to be cost-effective (National Institute for Health and Clinical Excellence (NICE), 2006) and enable parents to meet others experiencing similar situations, which has been shown to reduce parenting stress (Boyd, 2002).

The EarlyBird Plus Programme

The EarlyBird Programme developed by the National Autistic Society (NAS) is a psychoeducational group programme for parents of preschool children with ASC (Shields, 2001). The NAS subsequently developed the EarlyBird Plus Programme (EBPP) for parents of children aged between 4 and 8 years (NAS, 2010). To become a programme facilitator, professionals must have prior experience of working with people with autism and must complete a training course with the NAS.

The content of these programmes is organised into three sections: understanding autism, which focuses on understanding how children with autism experience the world and how autism affects development; communication, in which parents learn how to best develop interaction and social communication with their child; and behaviour, which involves helping parents learn how to analyse their child’s behaviour and identify potential triggers and functions of difficult behaviours (Shields, 2001). The EBPP is a 10-week programme comprising eight group sessions and two home visits, as well as a pre-group information session. An informal follow-up session is also arranged 3 months after the group ends. A maximum of six families are invited to attend each programme; every family is allocated two places for parents/carers and one place for a professional who is working with the child/family. The group sessions use presentations, flipcharts and video examples to illustrate key strategies, small group work and whole group discussions, and there is an emphasis on parents and professionals working together in ‘teams’. Parents are not typically offered incentives (e.g. childcare, transport and meals) for attending the EBPP. Attendees complete a post-programme questionnaire (PPQ; NAS, 2011) at the end of their group programme; this is then returned to the NAS by the programme facilitators.

The EarlyBird Programme has been evaluated and improvements were noted in parental stress, communication with the child and perceptions of the child (Engwall and MacPherson, 2003; Hardy, 1999). There is little published evidence of the effectiveness of the EBPP or parents’ satisfaction with the programme. Psychoeducational parent training programmes are recommended in national guidance (NIASA, 2003), but the EBPP has not yet been thoroughly evaluated. In the current economic climate, funding for staff training may be limited; therefore, research is needed to explore whether the EBPP is a useful intervention for services to commission.

Clubb (2012) reports the themes which emerged from responses on PPQs completed by 120 families and 48 professionals who had attended the EarlyBird or EBPP over a 7-year period. They report perceived increases in skills, understanding and problem-solving; however, they did not separate the findings for the two groups, although the format and methods used in the two groups differ. The EarlyBird Programme involves video interactive guidance, which is not included in the EBPP, and it is only offered to parents/carers, there are no places for professionals. The impact of the EBPP for schools has also been reported in a small qualitative study of the views of parents and professionals in relation to three children (Silvey and Mak, 2009). The participants described how the quality of communication between home and school had improved and more consistent approaches were used.

This study aims to report parent’s views of the EBPP as decisions about attending the programme are made by the family; therefore, it is important to establish parents’ unique views of the EBPP. Parents’ perceptions of their learning during the EBPP will be evaluated as well as their general experiences of the programme.

Method

Participants

Completed questionnaires were available for 120 parents/carers from 25 EBPPs which were delivered in the north of England between September 2011 and September 2012. In all, 95 of the participants were female (79%). The participants represented 105 children whose mean age was 6 years 3 months (range = 3 years 5 months to 9 years 7 months), and 87.5% of the children were male. Further demographic information was not available for the sample as the data were returned anonymously to the NAS EarlyBird Centre. The EBPP is delivered in a range of services provided by the National Health Service (NHS), local authorities and third-sector organisations and, as such, EBPP recruitment strategies will differ. However, the broad range of services offering the programme should increase its availability and accessibility to diverse populations. All returned parental PPQs for groups delivered across the north of England were included in the study; no further inclusion/exclusion criteria were applied.

Measure

The PPQ (NAS, 2011) has 10 closed-ended items that ask parents about their experiences of the EBPP and changes they have noticed since attending the group; eight of these are rated on a 5-point Likert scale and two require yes/no responses. There are four additional questions that allow parents to provide qualitative feedback about their experiences and general comments about the programme.

Procedure

Parents/carers are informed that their completed PPQs will be used for the purposes of evaluating the programmes. Anonymised data were collected from the NAS EarlyBird Centre with permission of the Director of the Centre. Only PPQs completed by parents/carers were collected; questionnaires completed by professionals who had attended the programme were not included in the study.

Data analysis

The data were analysed using Predictive Analytics Software (PASW) 18. Frequencies and means were used to summarise participant responses to the closed-ended questions. Content analysis was used to analyse participants’ responses to the qualitative items. This method of analysis was chosen as the aim was to describe the participants’ views of the EBPP and their unique perspectives, without imposing preconceived ideas or themes. After all the responses within an item were read, individual participant’s responses were studied and codes assigned to phrases which captured the meaning of the text. The first author’s (A.L.C.) experience in delivering the programme helped identify references to specific terms used in the EBPP and aided the organisation of the codes, for example, clusters of codes referred to specific strategies. After coding several participants’ responses, the remaining responses were then coded using the preliminary codes, adding new codes if the data did not fit with the existing ones. Once all responses had been initially coded, codes were refined and redefined until they adequately described the range of responses but allowed for clear distinctions to be made between codes; they were then organised within categories. Individual phrases could fit into one or multiple categories. All coding was carried out by A.L.C., but the codes and corresponding categories were checked by the second author (S.J.M.); disagreements tended to focus on ‘communication’, which was referred to in all items.

Ethical considerations

Ethical approval was gained from the County Durham and Tees Valley National Research Ethics Services (NRES) Committee and the Research Governance and Ethics Committee within the School of Health and Social Care at Teesside University. Data were kept secure as required under data protection regulations.

Results

Participants’ responses about changes as a result of attending the EBPP were very positive and generally indicated that the programme was beneficial (see Table 1). Most participants (99%) said they would recommend the programme to others and reported it had been helpful to meet and work with other parents and professionals.

Table 1.

Participants’ responses to the PPQ.

Item	Strongly agree	Agree	Neither agree nor disagree	Disagree	n
Item	%
Enjoyed attending EBPP	92.4	7.6			105
Understanding of X’s autism has increased	81.9	16.2	1.0	1.0	105
Communication with X has improved	62.1	35.9	1.9		103
Understand more about managing X’s behaviour	69.9	28.2	1.9		103
Relationship/communication as a team has improved	63.2	29.9	6.9		87
EBPP has had a positive influence on family/school life	57.7	40.4	1.9		104
Family/school life has improved	50.5	43.7	5.8		103
Feel more confident in ability to meet X’s needs	61.9	37.1	1.0		105

PPQ: post-programme questionnaire; EBPP: EarlyBird Plus Programme.

Multiple responses were available for 14 children, and therefore, data from 15 participants were removed from the analysis to avoid duplication (one child was represented by three carers, so that the number of additional respondents was greater than the number of children). In most cases, the responses of linked participants were in agreement or differed by 1 point.

Main categories were identified from responses to each qualitative item. The main categories will be discussed and are based on the responses of all 120 participants.

Item 1: learning about autism

The key categories for this item were as follows: (a) knowledge about the condition, (b) specific strategies the parents had learned and (c) coping with the child’s condition. The first category included understanding the symptoms and the lifelong nature of the condition, as well as recognition that children with ASC see the world differently:

What autism is and what are signs of autism. I’ve learnt she is always going to have autism.

Learned the ‘triad of impairments’. People with ASD have poor social skills, they find it hard to understand the world around them and it affects their everyday life.

Autism is a developmental disability.

The second category included strategies parents learned during the programme, such as the use of visual supports, analysing behaviour and the importance of parents changing their communication and behaviour:

I learnt lots of things about behaviour and challenging and managing behaviours. How we can analyse behaviour. How to use Iceberg and STAR and how useful they are.

Routine, give time to register things, reduce your language, say ‘stop’ or ‘finish’.

I have become more aware of the changes I need to make to help [child].

The final category identified ways parents had learned to cope with their child’s condition, for example, being patient, seeking appropriate support and sharing experiences with other parents:

Be patient, prepared … Stay calm.

Other parent’s stories. It’s nice to know you are not alone and there is help and support.

… obtain advice from professionals on specific issues.

Sharing and listening to other people’s views and problems.

Item 2: learning about communication

The key themes for the communication item were as follows: (a) strategies to improve communication, (b) how communication differs for children with ASCs, (c) how parents need to adapt and (d) general learning about communication. The ‘strategy’ theme included the use of visual supports, social stories and offering choice:

Use of Iceberg, social story.

I give [child] a choice in things a lot more and when going out I always make sure there is a ‘finish’.

The second theme highlighted differences in communication with particular focus on their literal understanding and their difficulties with the non-verbal aspects of communication:

How hard it is for people with ASD to interpret facial expressions and inferred reasons. Something we take for granted.

… even though they can be very verbal, they don’t always understand what is being said to them.

The parental adaptation theme included parents reducing or simplifying their language, allowing more time for the child to process information and learning to be patient.

… adults tend to overuse language – I did it as well, a lot. Now I’ll try to keep it as simple as possible.

… it is my families communication that needs to change e.g. using less words.

The final communication category referred to general concepts parents had learned about communication, for example, that communication is not just language:

In a former job I was a Communication Manager. I thought I knew a great deal about communication however this has taken my understanding to a new level.

… talking is actually a very small part of communication.

… it involves many things e.g. eye contact which I never realised before.

Item 3: learning about behaviour

Three main themes emerged from parents’ responses about what they had learned about behaviour. These themes were as follows: (a) why behaviour occurs, (b) specific strategies parents had learned to manage their child’s behaviour and (c) how parents’ views of behaviour had changed. In terms of why behaviour occurs, parents gave a variety of reasons which included communication, sensory problems, resistance to change and problems with social understanding:

There are reasons for it … fear, anxiety, frustration etc.

… inappropriate behaviour usually occurs because of the lack of understanding of communication.

Parents also described a number of strategies they had learned to manage behaviour, such as analysing behaviour, using the Setting, Triggers, Action, Results (STAR) and Iceberg techniques, altering the environment and preparing for change:

… it is important to get the communication and visuals correct so that the behaviour is less likely to be an issue.

Watch for setting and triggers – reward appropriate behaviour immediately.

To use the ‘iceberg’ again and to try and understand why.

Within the final theme, parents identified they needed to allow for their child’s autism. They also acknowledged how their own behaviour impacts on their children and that there are reasons for their child’s behaviour:

I now realise I used to think X was being naughty and tell him off … if he gets upset/anxious I react differently now.

That our behaviour principally, i.e. as parents, has to change to help them improve.

Item 4: messages for other parents/professionals

Parents’ messages to other parents or professionals generally focused on three themes: (a) child-focused outcomes, (b) parent- and family-focused outcomes and (c) benefits of meeting other parents and professionals. Child-focused outcomes included how the programme can help parents understand their child’s needs and facilitate child development:

… to help you understand your child’s needs better.

It’s really helped us understand [child’s] autism better so we can help him.

I will be able to help and support my child better.

Parent- and family-focused outcomes included a reduction in parental stress and improvements in family life. Parents also described feeling empowered and more confident:

… it’s fantastic for empowering parents.

Excellent strategies to live a stress free family life.

Being able to help and understand your child is the best feeling.

… just made life better for us as a family.

With regard to the third theme, parents reported that it was helpful to meet others in the same situation and share experiences. They also described improvements in home–school relations and the benefits of using consistent techniques at home and school:

It’s excellent. Gave us more understanding and made us work better as a team. Also, made our relations with the school professional a lot stronger.

It is essential! Not only do you gain greater understanding about autism but meeting other parents in a similar situation really helps.

As a parent of a newly diagnosed child with autism it is ideal to meet others in the same situation.

Discussion

This project aimed to investigate parents’ experiences of the EBPP and their perceptions of the impact of the programme. The majority of participants reported enjoying the group programme and said they would recommend the group to others. This suggests the EBPP was acceptable to the sample of parents included in this study, which is significant given the relative scarcity of appropriate parenting interventions for families with an older child with ASC (Pillay et al., 2011; Todd et al., 2010).

Most parents reported that their understanding of autism had increased, their communication with their child had improved, they had a greater understanding about how to manage their child’s behaviour and they felt more confident in their ability to meet their child’s needs. Additionally, the majority of parents reported that home–school communication had improved and the EBPP had a positive impact on family life, which indicates the participants felt they had benefited from attending the programme.

A common theme in parents’ descriptions of their learning reflected the specific strategies they had been introduced to on the programme; however, another key outcome seemed to be a realisation that parents need to change, not the child. Additionally, parents described coping strategies they had learned and improvements to family life, as well as commenting on the benefits and relief of meeting others in a similar situation.

These findings suggest that parents value the format of the group programme with the inclusion of a professional and opportunity to share experiences with other parents. Pisula (2011) proposed that one of the main factors which contribute to parenting stress is the lack of availability of appropriate supports and inadequate relationships between parents and professionals. The positive feedback from parents about the inclusion of professionals in the EBPP suggests that the format of the programme may promote collaborative relationships between parents and professionals, thus potentially impacting on stress. It has been suggested that parents cope more successfully when they perceive supports to be helpful (Bristol, 1987; Siklos and Kerns, 2006). Parents were very positive about the EBPP and the support received from professionals and other parents; this is a promising finding for considering the potential impact of the programme on parenting stress and coping.

The primary aims of the EarlyBird Programmes are to increase parents’ confidence and competence, rather than have a direct impact on the child’s behaviour, but many parents reported that the EBPP had helped them learn how to better manage their child’s behaviour and prevent behaviour problems. This study did not include objective measures of the child’s behaviour and did not utilise a pre-/post-design, and hence, it is not possible to assert that the EBPP impacted on the child’s behaviour. It has been suggested in previous research that parents experiencing high levels of stress and psychological distress may rate their child’s behaviour more negatively (Morgan et al., 2002). Therefore, parent training interventions that aim to improve parenting stress and parental psychological distress may improve parents’ perceptions of their child’s behaviour, although the child’s observable behaviour may not change. Future evaluations of the EBPP should aim to clarify whether parents’ perceptions of their child’s behaviour improve during the EBPP, and if so, whether the child’s observed behaviour also changes.

Information about parents who decided not to attend the programme, or who dropped out from the programme, is not available as the data were obtained through anonymised completed questionnaires returned to the EarlyBird Centre. Therefore, it is possible that parents who perceived the group to be ineffective may not be represented in this study as they may have dropped out of the programme before the PPQs were completed. Clubb (2012) reports parental attendance rates in excess of 80% for the EBPP, although drop-out rates were not reported. Future research should identify drop-out rates for the programme and reasons for non-attendance, to consider barriers to attendance.

The ages of the participants’ children extended beyond the age criteria for the EBPP (4–8 years). This might indicate that age-appropriate programmes were not available locally for these families and might reflect a difficulty in delivering programmes in existing services, which need to meet the needs of a wide range of families. The impact of including parents of a broader range of children in these programmes has not been assessed.

As this study did not use a pre-/post-design and relied on a post-group evaluation questionnaire, there are no objective measures of change. The PPQ relies on the participants’ feedback following the group, and as such, they may have been more likely to provide favourable responses due to their commitment to the programme. Additionally, they were given the PPQs by their group facilitators, which may have increased the likelihood of bias in their responses. Future research should aim to use standardised measures of parent and child outcomes (e.g. parenting stress and child behaviour), a pre- and post-programme in a controlled trial where the EBPP could be compared to a no-treatment control group and/or a social support group. In future research, it may also be beneficial to objectively assess school-based change as evidence of improvements in school may encourage school staff to be involved in similar interventions.

Conclusion

In conclusion, this study suggests that the EBPP was acceptable to this sample of parents/carers who completed the post-programme evaluative questionnaires. Participants reported increased understanding of autism, communication and behaviour management strategies and described changing attitudes towards their child. Parent reports suggest the EBPP may have a positive impact on the child’s behaviour, parental coping, family life and the family’s relationship with school, although controlled studies are required to establish objective evidence regarding the effectiveness of this programme.

Footnotes

Acknowledgements

This research was conducted as a part of the first author’s (A.L.C.) Doctoral Thesis at Teesside University and we are grateful for the support of the Tees, Esk and Wear Valleys NHS Foundation Trust Research Initiative. We would like to thank the Director of the National Autistic Society’s EarlyBird Centre for allowing us to use their data in this study.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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