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Best of PALS
Judy Crow and Diana Finley explain how they developed the PALS (Parents, Aspergers/Autism, Language and Social Skills) programme to meet a clinical need for better support, information and useful strategies for parents of older and more verbally competent children with social and communication difficulties.
READ THIS IF YOU WANT TO • ADDRESS A GAP IN YOUR SERVICE • OFFER GROUP TRAINING • FACILITATE PEER SUPPORT or referred by colleagues in CAMHS (Child & Adolescent Mental Health Services). All children in the early programmes attended mainstream schools. Subsequently, colleagues working in special education have indicated that many families they encounter would also benefit. We do feel the structures and principles of PALS could be usefully adapted by those wishing to develop a programme for parents of children with a range of differing needs (such as moderate learning difficulties or specific language impairment) by altering the content and emphasis as appropriate. However, organisers should not be tempted to include families with younger children, or those with core autism, as the PALS programme does not meet their needs. We found that that the optimum number of participant families was 8 to 14 but it is perfectly possible to run a course with smaller numbers, for example in a rural area. The minimum number of families to make a viable group is probably four to six, taking into account occasional inevitable absences and the need for consistent members to build a group dynamic. Conversely, including too many families may result in insufficient time to give each the personal attention and support needed. Our programmes were initially presented by both of us as experienced therapists, but as time went on we found that one therapist with an assistant or student was equally effective. Our pilot programmes took place in the early evening to allow access to working parents, but location and times are flexible. We found a weekly session of two hours about right, with a 15 minute break. A Weekend Workshop format could work equally well.

Judy Crow

Diana Finley

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s consultant speech and language therapists specialising in autism spectrum disorders, we have a background in delivering the Hanen ‘More Than Words’ programme (Sussman, 1999) over many years. This has been successful in helping parents develop positive strategies to facilitate their young children’s development of play, communication and interaction skills. Parents also value the opportunity to meet other families experiencing similar difficulties. However it became clear to us that there was a need for more advanced strategies as the children grew. We did not feel ‘More Than Words’ was suitable for parents of older and more recently identified children, as it is designed for pre-school children and teaches early communication and play strategies. The parents of older and more verbally competent children nevertheless needed some specific support and information. To meet this need we developed the PALS programme. It is specifically designed for parents of children between 6 and 12 years of age who have Asperger Syndrome, highfunctioning autism, semantic-pragmatic disorder, PDD-NOS (Pervasive Developmental disorder – Not otherwise specified) or other complex social and communication difficulty. We wanted it to be equally suitable for those families who had previously attended an early

intervention course, or those whose child had been newly identified at a later stage. We offered two pilot programmes in Northumberland. These reached 28 families and were extremely well received. We therefore felt confident in offering this programme on a regular basis, and also encouraging other professionals to participate. We hope that any specialist speech and language therapist who has experience of working with parent programmes or wishes to develop this area of service delivery will find this new programme of interest. Equally, other professionals who have considerable experience both of autism and working with families may find it helpful and bring valuable insights of their own to the programme. The programme has three main aims: 1. To provide knowledge and insight for parents into their child’s difficulties with language and social interaction 2. To provide strategies to help with these difficulties 3. To bring together groups of parents who are facing similar difficulties and facilitate their mutual exchange of experiences and support. The participating families all had a child who fulfilled our age and diagnostic criteria. Families were recruited from our own caseloads and communication clinics

Time for sharing

One of the aspects of the programme most valued by those attending was the opportunity to share experiences and support with other parents in similar circumstances, and it was important that we left time for this to occur. Similarly, parents often raised issues spontaneously during the course of these sessions, and we found it helpful to allow ourselves to respond to these naturally rather

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Figure 1 Programme Content 1 Part 1 Introduction • Autism, Aspergers and the range of the spectrum Part 2: Theory of Mind • What is it, why and how do we use it, can we teach it? 2 Obsessions and Routines • What do the children get out of them? • We can’t eliminate them all – which can we live with; which are unacceptable? • Strategies to Help 3 Language • Language development in autism spectrum disorder, how does it differ from the norm? • Specific language problems • Strategies to help 4 Visual Supporters • What are they, how and why do we all use them? • Information on a range of visual supporters; how they can help • Social Stories (Gray & White, 2001) 5 Making and Sustaining Friends (see figure 2) • What is friendship? • Why do we value it? • What do our children need in terms of friendship? • Strategies to help 6 Final Session Part 1 Discussion on topics of choice (issues parents have raised during the programme), for example: • When to tell a child about his autism spectrum disorder • What to tell other people, and when. • Anxiety in Asperger’s Syndrome Part 2 Guest Speaker, such as • Consultant in Child and Adolescent Mental Health Child • Clinical psychologist • Educational psychologist Questions/Discussion Evaluation and Information Packs Figure 2 Sample Session Content Session 5 Making and Sustaining Friends What is friendship? • What does it mean to us? • Why do we value it? • What does it mean to our special children? What do the children need in terms of friendship? • Different ages – different needs Different types of friendship • Who needs what? • How do adults make friends? • And typically developing children? • What makes us like our friends? How can we support our children’s need for friends? Strategies for different stages • Turning obsessions into opportunities • Special groups and clubs • Parents’ groups Perhaps the most important lesson – accepting the child’s need to be sometimes alone and not to have friends. “Loneliness is not always the same as wanting to be on your own.” Figure 3 Which topics did parents find most helpful? 16 14 12 10 8 6 4 2 0 Autism and Obsessions theory of and mind routines Discussion Making Language Using with other friends development visual and use supporters parents

than sticking rigidly to a planned agenda. For example, we found that parents frequently raised concerns that their child might be vulnerable to bullying. We were able to explore the nature and perceptions of bullying and discuss as a group how to address it. As trainers we found it important to use sensitive listening skills and to be alert to the underlying anxieties that parents might be expressing. For the style of presentation, we took account of factors that are believed to make learning most effective for adults (Lieb, 1991). These include: • Drawing on own experience • Being prepared for the topic / building awareness • Providing clear information • Seeing the relevance and application of the information to own situation • Providing practical strategies to help. For these reasons we used a ‘Ready, Steady, Go’ approach: READY (being prepared for the topic and building awareness)

STEADY (giving clear information) GO (seeing the relevance and application, strategies to help). Each session therefore consisted of a mixture of personal experiences from parents, direct teaching and then discussion of strategies. The programme content covers six sessions (figure 1). We found session 5 on Making and Sustaining Friends (figure 2) particularly moving, as parents gained awareness of the differing types of friendship, and their child’s need for personal space. Although the running order of the programme is generally flexible, we found it was important to have this particular session towards the end, when members of the group were beginning to build trust with each other and we knew them well. The dynamic of every group differs; some parents can be very vociferous, assertive or needy, whilst others require encouragement to contribute. Trainers again need to be flexible and alert to ensure that everyone has an equal opportunity to voice their concerns or views.

Usefulness evaluated

We evaluated the usefulness of the PALS programme by seeking the views of all parents who attended via a questionnaire. Twenty eight families attended our first two programmes and 22 questionnaires were returned. Overall average attendance was five out of the six sessions. The questionnaire included general and specific queries and the feedback was generally extremely positive. Questionnaires were anonymous and we had asked parents to be as honest and constructive as possible in their feedback. We explained that, as this was a pilot, their views would help to shape future content of the programme. All 22 of the respondents agreed they found the style of presentation helpful and said that they would recommend PALS to other families. Figure 3 shows the topics the responding parents said they found most helpful. We asked parents to indicate as many topics as they wished, without hierarchy. Specific feedback included:

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“It was great to meet other people who were going through similar problems.” “I cannot over emphasise how welcome it has been to hear discussion on practical and pragmatic things that are clearly relevant and which will help us.” “I think the course gave us time to take ‘time out’ of our normal situation and focus on our daughter and things we could do to support her in her daily life.” “[In the past] We were given the diagnosis and told to read Tony Attwood’s book [Attwood, 2006]. That is all the information we were given. This programme has been invaluable in helping us understand our child and his difficulties. I wish his teacher had the same level of knowledge and understanding.” We have both recently left the NHS but offer training workshops to enable other staff and professionals to deliver the PALS programme. We have also had a book published (Crow & Finley, 2009) which provides detailed session plans and teaching materials to enable others to present the programme. We would like to follow up future programmes with more detailed assessment and evaluation of benefits to children, families and service providers. We would be interested to hear from others who would like SLTP to contribute to this. Judy Crow (email jacrowslt@yahoo.co.uk) and Diana Finley (email diana.finley@virginmedia. com) are consultant speech and language therapists who developed the PALS programme while working for Northumberland NHS Care Trust. Both are now in the independent sector.
References Attwood, T. (2006) The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley. Crow, J. & Finley, D. (2009) PALS. Parents Aspergers/ Autism, Language and Social Skills. Chesterfield: SHU (Sheffield Hallam University) / Winslow Press. Gray, C. & White, A.L. (2001) My Social Stories Book. London: Jessica Kingsley. Lieb, S. (1991) Principles of adult Learning. VISION. Available at: http://honolulu.hawaii.edu/intranet/ committees/FacDevCom/guidebk/teachtip/ adults-2.htm. (Accessed 6 October, 2010). Sussman, F. (1999) More than Words: Helping Parents Promote Communication and Social Skills in Children with Autism Spectrum Disorder. Toronto: The Hanen Centre.

In Brief...
Easier self-referral for people who stammer
Pat Brookes on how a speech and language therapy department is working with service users to become more ‘stammer-friendly’ by developing web-based information and referral. have been working with adults who stammer since 2000. Sometimes clients would tell me about their experiences of difficulties in getting a referral for therapy. Most assumed that they needed to be referred by their GP. The process of phoning for an appointment or talking to the receptionist in a crowded waiting room and then explaining their difficulty to the doctor felt very daunting to many of them. Those who braved this process did not all find their GP very helpful. Some were given incorrect information, even that there was no provision, so we wondered how many potential clients are lost at this point. Although we offer open referral for fluency problems, potential clients had few ways of knowing this and, if they did, the normal option of making a phone call to a complete stranger, or answering machine, was far from ‘stammer-friendly’. The process was putting unnecessary barriers in the way of people who needed help and advice and failing to fulfil the Royal College of Speech & Language Therapists’ requirement: “Referral procedures will ensure that all individuals have access to the service, irrespective of age, language, gender, race, presenting communication difficulty or location” (RCSLT, 2006, p.190). In 2008 Anna Shepherd, a student speech and language therapist, undertook a serviceuser consultation about access to and value of speech and language therapy for adults who stammer. She interviewed nine people who had received speech and language therapy. The participants in her study valued the speech and language therapy that they had received, but thought that the speech and language therapy service did not inform the public about the help that was available, and that referral was difficult. Anna reported, “All participants believed that the SLT department should advertise their services better including alternative ways to access SLT, such as an email service and a direct telephone number for the SLT department.” We decided to put information about the fluency service on the PCT website, including alternative means of referral. The communications and IT department were enthusiastic about the idea. We linked up with Katie Pringle, Communications special project officer, who implemented our ideas.

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We decided that the website needed to include information about the whole service for people who stammer from preschool to adult. The design consisted of a short introductory page with quotes from service users and four options aimed at the different age groups. On each page there is a brief description of the difficulties that stammering can cause for that age group, a description of what the speech and language therapy service can provide, and ways to self-refer. There are also links to other helpful organisations such as the British Stammering Association and the Michael Palin Centre. Two service users reviewed and agreed the wording and layout. The information package was approved by speech and language therapy managers, IT and information governance. We produced leaflets for adults and for teenagers with the same information as on the website to encourage self-referral. The website went live in the autumn of 2008. Adults on my current caseload who stammer looked at the website and confirmed that it was easy to access (by searching for “North Tyneside stammering”) and included the information that they thought was necessary. Comments included: “Really liked the matter of fact approach... delighted to see it up and running and so easy to access, too” “has all the details for each age group”. The leaflets for teenagers were sent to high schools and colleges in North Tyneside. The information about self-referral was publicised in an article in our local paper, the Newcastle Evening Chronicle, in March 2009. Its content was largely based on ideas from the adults who stammer who attended an evening therapy group.

REFLECTIONS ON GROUPS • DO I OFFER A MIX OF DIRECT TEACHING, DISCUSSION OF STRATEGIES AND OPPORTUNITIES TO SHARE PERSONAL EXPERIENCES? • DO I STAY ALERT, NOT JUST TO WHAT PEOPLE ARE SAYING, BUT THE UNDERLYING ANXIETIES THEY MAY BE EXPRESSING? • DO I HAVE THE FLEXIBILITY TO DEAL WITH EACH GROUP DYNAMIC AND ENSURE EVERYONE HAS THE CHANCE TO CONTRIBUTE?
To comment on the impact this article has had on you, see guidance for Speech & Language Therapy in Practice’s Critical Friends at www. speechmag.com/About/Friends.

Unexpected bonus

I normally receive about 12 referrals a year for adults who stammer. This year 4 of the initial enquiries that I received were via email and text. An unexpected bonus for service users was that adults on my caseload have found it very useful to use text and email for arranging or changing appointments, sharing news about issues relating to stammering and discussing ideas. I plan to inform GPs about the website so that, if people come to them asking about speech and language therapy for stammering, they have easy access to accurate information for their patients. Pat Brookes is a speech and language therapist and specialist in stammering with NHS Newcastle and North Tyneside Community Health.

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