SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 201114

WORKING WITH PARENTS

New Pathways Lynsey Paterson reviews the literature on parent training which follows a diagnosis of autism, then explains how this has informed the design and implementation of a consistent, evidence based programme across Tayside.

READ THIS IF YOU WANT TO• DO MORE OF

WHAT WORKS• OFFER AN

EQUITABLE SERVICE

• HELP FAMILIES COPE WITH DISABILITY

A. LITERATURE REVIEWWhen NHS Tayside developed a new autism diagnostic service for children and young people in line with national guidelines (SIGN, 2007), it identified inequity in provision of parent information sessions following a diagnosis. To ensure our resultant new pan-Tayside parent training programme would be consistent and reflect research evidence, I undertook a literature review as part of an MSc in Autism. I had four key questions, and linked findings with recommendations (R) if the evidence was strong and with considerations (C) if less clear-cut (figure 1).

1. What have parents found supportive and helpful when their child has been diagnosed with autism?There are considerable emotional and practical demands on parents at the time of diagnosis. Keen et al. (2010) concluded that parental access to information about evidence based strategies alleviated some of the stress and increased self efficacy, most notably when it was individualised (R1).

In Mansell & Morris’s (2004) postal survey, 89 per cent of the fifty respondents found the most useful support from a family support worker, the local parent support group and the parent support course (R2; R3). Over 50 per cent had accessed the internet with variable levels of usefulness, 70 per cent books and 30 per cent academic journals (R4). Dunn et al. (2001) found from 58 survey returns that parents were more likely to cope by maintaining social supports, having good self esteem and psychological stability (R5).

In a longitudinal survey, Gray (2006) concluded that coping strategies change over time. Ten years on fewer parents relied on service providers, and parents used fewer strategies (C3). Appreciating the child’s good qualities and achievements can help parents cope (R6).

2. What happens if parents are not supported following their child’s diagnosis?Whitaker (2002) found parents did not find mainstream supports overly useful and needed more specialised, autism specific input. Dunn et al. (2001) and Keen et al. (2010) reported that parents with children with autism spectrum disorders experience more stress than parents

of non-disabled children or children with other disabilities. Lecavalier et al. (2006) added that having a child with conduct problems was a particularly significant predictor of stress (C4). Keen et al. (2010) identified that mothers are more typically affected by eating, sleeping and emotional dysregulation than fathers, who are more typically affected by a child’s externalising behaviours than mothers (R7; R8). Whitman (2004) discusses the impact of stress depending on family challenges versus protective, moderating factors (C5). He states, “the healing process is facilitated through gaining knowledge” and, if parents are given the opportunity, they can “start out as students and end up as teachers” (p.244/5) (R9).

3. What is the evidence for long and short term benefits of parent training?McConachie & Diggle (2006) conducted a comprehensive review but excluded many studies due to weak methodology. The 12 included studies showed parent training can improve children’s social communication skills and have positive effects on parent-child interactions and maternal knowledge of autism. Solomon et al. (2007) reported that, of the 68 children who engaged in their parent mediated intervention, 45.5 per cent made good functional developmental progress, 52 per cent made very good clinical progress and 70 per cent of parents were very satisfied with the approach (R10). Engwall & MacPherson (2003) concluded that parents were less stressed as they had acquired relevant information and learnt new practical skills in supporting their child (R11). On evaluating the EarlyBird parent programme, Shields & Simpson (2004) noted moreover that parents perceived their child more positively. All these programmes provided written information, which parents found helpful (R12).

Sofronoff et al. (2004) compared parent training in a one day workshop to individual sessions and found similar results. Keen et al. (2010) compared professionally supported workshops and home visits with self directed video based intervention. The professionally supported intervention was more effective in reducing parenting stress (R13).

Rickards et al. (2009) followed up 54 families one year after they had completed a home based programme. Improvements were sustained, and children from highly

stressed families and families with limited social support appeared to benefit the most. When Seung et al. (2005) trained fathers, they showed increased feelings of parental competence, marital satisfaction and self worth compared to fathers who were not involved (R7; R8).

As less cohesive models exist for older children, Matson et al. (2009) state that, “further programs need to be developed that help the child with ASD (and their parents) cope with new life challenges over time” (p.873) (R14).

McConachie et al. (2005) noted that some families turned down training, citing stress (C6). Matson et al. (2009) say the drop out rate from parent training in general is high and parents who perceive the treatment to be ineffective are more likely to drop out (C7). Whittingham et al. (2009) found a minority reported a negative experience, stating that they were uncomfortable in group situations and found discussions too focused on just one member (R15). Andrews & Brock (2004) outlined challenges in organising parent training including finding a suitable venue, making information easy and accessible, ensuring equity of access, protecting professional time and identifying support after the training (C8; C9).

4. What areas should be covered in parent training sessions?Whitaker (2002) found the most frequent unmet parental need after diagnosis was information about autism spectrum disorder, how it manifests itself in their child and options for support (C1). Shields (2001) identified four key components: to increase confidence, understand the nature of autism and the causes for behaviour, and provide an opportunity to learn from other parents. Andrews & Brock (2004) included understanding autism, communication, behaviour, education, sharing diagnosis, managing stress and accessing help. In addition Keen et al. (2010) covered play, sensory issues and strategies to facilitate communication such as alternative communication and following the child’s lead. Whittingham et al. (2009) say many parents found social stories and comic strip conversations helpful. Parents in Sofronoff et al. (2004) found information on autism and management of behaviours most useful (R16).

WORKING WITH PARENTS

15SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 2011

It is difficult to compare different studies and identify significant factors because robust methodologies are lacking, and evaluation was carried out in many ways (C10). However, the research base we have shows training is one of the tools that can empower parents and the wider family, including siblings, to cope with a child who has autism (C2). Future research should evidence the impact of investing in families at this early stage.

It is important to remember that, as the impact of autism is diverse, each family also requires an individual approach. Most crucially, as Le Couteur (2003) reminds us,

Figure 1 Recommendations and Considerations

Recommendations1. Parents should receive information about strategies that are relevant to their child.2. Parent training should be seen as part of the package of support a family receives.3. Close liaison with family support workers is essential to ensure they are aware of what is

included so they can support families who are attending.4. Families should receive information about accessing books, websites and academic papers.5. The format should allow for parents to learn from each other and share experiences and

knowledge.6. The skills and strengths of the children should be emphasised and a balanced view of living

with autism portrayed.7. Fathers and mothers may react in different ways to having a child with autism and may need

different types of support.8. Trainers should encourage fathers to attend.9. Experienced parents should be included in the training sessions if they are willing.10. All parents should be offered parent training with clear aims following their child’s diagnosis.

They should be made aware of the benefits of parent training that have been found in the research literature.

11. Training must have a balance of information giving and learning practical skills.12. Training should be reinforced with written handouts summarising the information covered.13. The training should be delivered by a professional who is knowledgeable in autism to groups

or in individual sessions depending on the needs of the families.14. Different training programmes should be developed for children of different ages that

parents can attend as their child develops.15. Group leaders should ensure the sessions are facilitated for all families to have equal

discussion time. 16. The content should include topics such as: understanding autism, communication (and

strategies like social stories and comic strip conversations), understanding and managing behaviour, sensory issues, play, sharing diagnosis, managing stress, how to access help, information from other agencies including education.

Considerations1. Parents should be helped to understand how autism affects their child.2. Training and information should be made available for other family members to access.

Consideration should be given to a member of school staff attending with the parents for children of school age.

3. Training should continue to be available as the child develops to ensure parents have up-to-date knowledge and parents should be able to access booster sessions.

4. Leaders should have an understanding of the stress having a child with autism can place on a family and appreciate this may limit their ability to learn and retain new information and strategies.

5. Families should be encouraged to become aware of what acts as a stressor for them and what they can do to help themselves.

6. The timing of when parents attend should be flexible so that they feel able to engage with the information.

7. When parents drop out of parent training, information should be gathered as to why.8. Possible venues should be investigated and this information held centrally.9. Parent training should be scheduled across the locality ensuring equity and to protect

professionals’ time.10. Evaluation of outcomes should be built into the training. Pre and post checklists to measure

parental stress and other forms should be considered.

Week 1Introducing your child. What is autism and social communication difficulties?

Week 2

What is behind the behaviour? (including sensory processing difficulties and an introduction to cognitive theories)

Week 3

Strategies to promote social communication development (visuals, PECS, The Incredible 5 Point Scale and language strategies)

Week 4

Strategies to promote social communication development (comic strip conversations, social stories and communication passports)

Week 5A summary and problem solving night for extended family and friends

B. APPLICATIONAs a team of speech and language therapists working with families going through a specific autism assessment, we were interested in putting the research findings about parent training into practice. We audited the parent sessions we were already running in some areas against the recommendations from the literature review. This highlighted several areas that were not being met, including written

information. We were also aware that delivery was not consistent across Tayside.

In conjunction with speech and language therapy and education colleagues from Perth & Kinross, Dundee and Angus, we designed New Pathways, a five session course (figure 2) for parents or main carers of children who have a diagnosis of autism or social communication difficulties. Each session lasts two and a half hours and is normally run weekly in the evening. The course aims to:• provide information and understanding

about autism and social communication• signpost parents to more information• enable parents to gain support from each

other• highlight strategies that can promote social

communication development.We recommend both parents come along

where possible for all five sessions. New Pathways can be run for preschool and primary school age children. The content is the same except we select relevant strategies for the group of children the parents represent. All sessions include a mixture of teaching, small group work, paired discussion and reflection and practical tasks.

Two main themes run throughout: 1. Multiagency workingEach course is run by a speech and language therapist plus a colleague from education (autism outreach teacher, educational psy-chologist or preschool home visiting teacher). The second session has a presentation from an occupational therapist who specialises in working with children with sensory issues. In the other sessions we have workers from Parent to Parent, a voluntary organisation. We also give out information about local supports and services that parents and carers have found helpful. 2. Parent involvementWe want parents to recognise all the expertise and skills they already have and to develop a

Figure 2 Course structure

information provision is a two way process and families must be listened to (R5; R15).

WORKING WITH PARENTS

SPEECH & LANGUAGE THERAPY IN PRACTICE AUTUMN 201116

How has this article changed your thinking? Let us know - see information about Speech & Language Therapy in Practice’s Critical Friends at www.speechmag.com/About/Friends.

ReferencesAndrews, A. & Brock, C. (2004) ‘A project to develop parent programmes in ASD: building support and enabling families’, Good Autism Practice 5(2), pp.14-18.Dunn, M. E., Burbine, T., Bowers, C.A. & Tantleff-Dunn, S. (2001) ‘Moderators of stress in parents of children with autism’, Community Mental Health Journal 37(1), pp.39-52.Engwall, P. & MacPherson, E. (2003) ‘An evaluation of the NAS EarlyBird programme’, Good Autism Practice 4(1), pp.13-19.Gray, D.E. (2006) ‘Coping overtime: the parents of children with autism’, Journal of Intellectual Disability Research 50(12), pp.970-976.Keen, D., Couzens, D., Muspratt, S. & Rodger, S. (2010) ‘The effect of a parent focused intervention for children with a recent diagnosis of ASD on parenting stress and competence’, Research in Autism Spectrum Disorders 4(2), pp.229-241.Lecavalier, L., Leone, S. & Wiltz, J. (2006) ‘The impact of behavioural problems on caregiver stress in young people with autism spectrum disorders’, Journal of Intellectual Disability Research 50(3), pp.172-183. Le Couteur, A. (2003) National Autism Plan for Children. London: National Autistic Society.Mansell, W. & Morris, K. (2004) ‘A survey of parents’ reactions to the diagnosis of ASD by a local service’, Autism 8(4), pp.387-407. Matson, M.L., Mahan, S. & Matson, J.L. (2009) ‘Parent training: A review of method for children with ASD’, Research in ASD 3(4), pp.868-875. McConachie, H. & Diggle, T. (2006) ‘Parent implemented early intervention for younger children with ASD: a systematic review’, Journal of Evaluation in Clinical Practice 13(1), pp.120-129.McConachie, H., Randle, V., Hammal, D. & Le Couteur, A. (2005) ‘A controlled trial of a training course for parents of children with suspected autism spectrum disorder’, Journal of Pediatrics 147(3), pp.335-340. Rickards, A.L., Walstab, J.E; Wright-Rossi, R.A., Simpson, J. & Reddihough, D.S. (2009) ‘One-year follow-up of the outcome of a randomized controlled trial of a home-based intervention programme for children with autism and developmental delay and their families’, Child: Care, Health and Development 35(5), pp.593-602.

Scottish Intercollegiate Guidelines Network (SIGN) (2007) Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders. Edinburgh: Scottish Intercollegiate Guidelines Network.Seung, H.K., Ashwell, S., Elder, J.H. & Valcante, G. (2005) ‘Verbal communication outcomes in children with autism after in-home father training’, Journal of Intellectual Disability Research 50(2), pp.139-150.Shields, J. (2001) ‘The NAS EarlyBird Pro-gramme: partnerships with parents in early intervention’, Autism 5(1), pp.49-56.Shields, J. & Simpson, A. (2004) ‘The NAS EarlyBird Programme: preschool support for parents of children with ASD’, Good Autism Practice 5(2), pp.48-60.Sofronoff, K., Leslie, A. & Brown, W. (2004) ‘Parent management training with Asperger Syndrome’, Autism 8(3), pp.301-317.Solomon, R., Necheles, J., Ferch, C. & Bruckman, D. (2007) ‘Pilot study of a parent training program for young children with autism’, Autism 11(3), pp.205-224.Whitaker, P. (2002) ‘Supporting families of pre-school children with autism’, Autism 6(4), pp.411-426. Whitman, T.L. (2004) The Development of Autism: A self Regulatory Perspective. London: Jessica Kingsley.Whittingham, K., Sofronoff, K., Sheffield, J. & Sanders, M.R. (2009) ‘Behavioural family intervention with parents of children with ASD: What do they find useful in the parenting program stepping stones triple P?’, Research in Autism Spectrum Disorders 3(3), pp.702-713.

Resources• Parent to Parent - www.parent-to-parent.

org/index.html • PECS (Picture Exchange Communication

System) - www.pecs.org.uk/• The Incredible 5-Point Scale -

www.5pointscale.com/

REFLECTIONS FOR SERVICES• DO WE SEE INFORMATION

PROVISION AS A TWO WAY PROCESS?

• DO WE CONSIDER THE POTENTIAL HARM OF NOT PROVIDING AN INTERVENTION AS WELL AS THE BENEFITS OF OFFERING IT?

• DO WE PLAY AN INTEGRAL ROLE IN WIDER STRATEGIC DEVELOPMENTS?

further support network with each other. We invite other parents to do a short presentation on using strategies at home, and have set up a group email so people can easily keep in touch after the group has finished.

The parents of all children who have a specific assessment and a diagnosis of autism or social communication difficulties are off-ered a place on a New Pathways course. So far we have run two preschool and two primary school age courses across two of the three areas of Tayside in a mixture of health and education premises. Catering facilities are essential to creating a relaxed atmosphere.

Uptake has been variable but is better if the course happens shortly after a child has completed their assessment. We have had really positive feedback; for example, “The topics covered and the knowledge gained are an invaluable resource for times ahead with our precious kids. It was lovely to meet the other parents and to share our stories. We now know that we are not as isolated as we thought.”

Evaluation forms show a resounding benefit is parents meeting others in a similar position. Many have gone on to meet up after the course and some have also requested a follow-up session six months later.

From our perspective, planning and development was time-consuming but we are seeing the benefit in having a standardised package. We have also found the courses very rewarding to deliver. Through them we have developed a consistent vocabulary to work with parents, which has in turn added to the good multiagency working across Tayside.

As New Pathways is not a branded package, we have flexibility over which parents can attend and the content. One parent asked if we could discuss issues with telling their son about his diagnosis, so we included this the following week. We have also been open to referrals from other professionals. One family wanted to come even though it has been five years since their son was diagnosed, as they now feel that they are ready to take on the information.

In future, we would like to deliver a regular rotation of New Pathways courses across all three areas of NHS Tayside and consider developing a six month follow-up session. We might need to write an adapted version for teenagers and their parents to attend as we appreciate there can be issues particular to this age group and a late diagnosis. We also have to remember that, as not all parents feel

Evaluation forms show a resounding benefit is parents meeting others in a similar position. Many have gone on to meet up after the course

comfortable participating, this should only be one of several different ways we have of working with and supporting families.

Lynsey Paterson is a speech and language therapist with the Autism Assessment Team, NHS Tayside, email lynseypaterson@nhs.net.

AcknowledgementsThanks to Julie Murray, Principal Speech and Language Therapist, and Fiona Young, Highly Specialist Speech and Language Therapist, who developed New Pathways with me. Thanks also to those who are also involved in its delivery: Donna Officer, ASD Outreach Teacher, Perth & Kinross; Penny Forsyth, Educational Psychologist, Dundee; the Occupational Therapy Service, Tayside; Moira Wares, Principal Speech and Language Therapist; and Rebecca Richardson, Highly Specialist Speech and Language Therapist.

SLTP