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

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.

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.

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.