care pathways

A holistic approachfrom the outset

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if you are interested in multidisciplinary working the generalist / specialist interface easing access to services

Hilary Cowan explains why offering intensive initial support from a multidisciplinary team, promoting functional communication at an early age and giving parents the opportunity to have a better understanding of their child is good news for preschool children with autistic spectrum disorder.

aird et al (2003) discuss the wishes of parents when they are going through the process of assessment and diagnosis of autistic spectrum disorder. Three of these wishes are to have : Equality of access and a prompt response to concerns Prompt provision of educational and therapeutic interventions The streamlining of assessment by a multidisciplinary team. In West Lancashire, parents and children with a suspected autistic spectrum disorder used to be seen separately by the educational psychologist, paediatrician and speech and language therapist and, although each individual professional offered a comprehensive service, communication between them wasnt always coordinated and cohesive. This occasionally left parents feeling as though they were receiving a slightly piecemeal service - and not always aware that professionals were communicating with each other. In May 2002, the three of us - Val Cumine, senior educational psychologist and specialist in autism, the consultant community paediatrician and me decided to streamline the preschool assessment, diagnosis and therapy offered. The changes we made in the coordination of our services came about at the same time as the United Kingdom working party National Initiative for Autism: Screening and Assessment (NIASA) - published as the National autism plan for children - was released in draft form. This document proposes best practice in the assessment and diagnosis of autism in preschool children with a suspected autistic spectrum disorder, and we have submitted a proposal to audit our service against the standards it sets out.

Contacted immediately
Children are referred to the multidisciplinary team by a variety of different professionals such as speech and language therapists, health visitors, community paediatricians and GPs. Parents are immediately contacted by a member of the team to discuss the

purpose of referral and what they can expect from us. Parents are also sent a preschool communication questionnaire to complete and return prior to the initial assessment. This gives not only an indication of the childs communication abilities but also the parents perception of their childs communication difficulties. Examples of these questions are: How does your child tell you what they want? Does your child point in order to a) Get something b) Show you something? Will your child join in with social games eg. peeka-boo? Does your child always respond to his/her name? Does your child use natural gestures to get his/her message across? Several questions are also included regarding the childs receptive and expressive language abilities. Parents and children are then sent an appointment to be seen in the child development centre, usually within four weeks of referral. The assessment usually takes place over a number of weeks in a variety of settings such as the child development centre, the childs own home and a nursery or preschool setting if the child is attending one. This gives the clinicians the opportunity to observe the childs communication and social interaction skills in different situations and with different people and allows me to assess the childs functional communication within these settings. The educational psychologist and I carry out most of the initial assessment sessions jointly. During the assessment process a variety of assessment techniques are used by each professional. Initially we carry out a parental interview, which can take up to two hours. However this is an invaluable time as it allows professionals and parents to form a relationship of trust, essential for future working relations. I use informal observation of the childs play, communication and interaction skills. If appropriate the childs receptive and expressive language will be formally assessed. We always carry out the POKIT (Mogford-Bevan, 2002). This is a qualitative assessment in which the child and parent/carer are videoed interacting and playing with specific toys. The educational psychologist and I then observe the video and complete a checklist which records social interaction skills and communication. The POKIT also includes a checklist for diagnostic indicators in play and interaction of autistic children. This has proven to be an extremely useful tool as it allows us to re-examine the childs play, social interaction and communication skills several times. It is not, however, a diagnostic tool to be used in isolation but part of an array of tools and observations to be used to aid the diagnosis of an autistic spectrum disorder. The child will also have a cognitive assessment by the educational psychologist if appropriate, and medical assessment carried out by the paediatrician.

Tremendous success
Communication therapy begins almost immediately the child is referred to our team. Parents are

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care pathways

offered weekly therapy involving work on joint attention and joint action routines, turn taking, imitation and the Picture Exchange Communication System (Frost & Bondy, 1994). Throughout the session the children are introduced to the concept of using visual symbols, photographs or objects of reference to help them understand what they are doing now and what they are expected to do next. Parents then use these strategies during the week at home and in nursery. Therapy sessions are based around an object or activity that engages the child which, according to Schopler & Mesibov (1988), is essential when working with children and adults on the autistic spectrum. Because the session is highly structured, as free as possible from extraneous distractions and uses a high proportion of visual strategies, the children settle into the sessions within a very short space of time, and begin to generalise the strategies being taught. We have had a tremendous amount of success since starting this type of therapy, not only with the children but also with the parents and nursery support assistants who are then able to go away with an idea of where to move the child onto during the week. Once a diagnosis of an autistic spectrum disorder has been reached, parents are offered a place on the EarlyBird course (Shields, 2001) which I run with one other speech and language therapist and the specialist educational psychologist in autism. This course lasts for thirteen weeks and gives parents the opportunity to learn about what an autistic spectrum disorder is, communication and autism, and managing behaviours. Groups vary in size from four to six sets of parents. This not only gives them the opportunity to gain a better understanding of their childs differences and difficulties but also allows parents in a similar situation to meet up and share ideas. Several have recently discussed starting up a local support group for parents and siblings of children with an autistic spectrum disorder. Once every half term parents and support assistants working with individual children are invited along to a Picture Exchange Communication System (PECS) training session. During the morning we discuss why PECS was devised, the importance of functional communication, phases 1 to 3 of PECS and how to implement PECS at home and in the nursery setting. This, together with the weekly therapy sessions and the EarlyBird training (which covers augmentative types of communication, specifically PECS), enables most parents to implement PECS at home. The early introduction of this type of communication system is of enormous benefit to the child as it gives them a successful means of communicating and their parents a structured positive approach to teaching communication which also often results in an improvement in their joint attention.

The three members of the multidisciplinary team meet monthly to discuss and collate the evidence and observations of each child.

As part of this initiative we felt that health visitor training was essential. We arranged a full day training session, which was well attended, and discussed several behaviours seen in young children presenting with a possible autistic spectrum disorder. We also discussed the use of the Checklist for Autism in Toddlers (CHAT) as a screening tool in addition to their general 18 month developmental screen. The CHAT was developed by Baron-Cohen et al in 1992 as a screening device to be used around the age of 18 months by GPs and health visitors; however, it is not meant as a diagnostic tool for autism. Baron-Cohen et al suggested that, although at this age there may not be specific behaviours that can be used to denote autism, the lack of certain behaviours at an expected time in their development may be indicative of an autistic spectrum disorder. The five key behaviours are:1. Protodeclarative pointing (pointing that is used to comment on something rather than to request something) 2. Joint attention 3. Interest in, and emotional engagement with, other people 4. Social play 5. Pretend play. Further training for Health Visitors and GPs is planned. The three members of the multidisciplinary team meet monthly to discuss and collate the evidence and observations of each child. Once all members of the team have reached an agreement, a diagnosis will be given to parents. The time taken to reach a diagnosis - or not varies with each child. Parents are asked to attend a meeting with the team members, but not to bring their child with them, to give them time to absorb the information being given and to ask questions. If the child does not have an autistic spectrum disorder we arrange a referral to a more appropriate speech and language therapist. I asked my eleven speech and language therapy colleagues what they think of our specialist service, and the impact it has had on them. Ten feel it is an excellent service and are very happy to transfer children at an early stage to a therapist with expertise in the area of autistic spectrum disorder. One is happy to transfer due to caseload pressure but is concerned at the potential deskilling of generalist therapists over time.

ents the information and support that is required to help them come to terms with such a diagnosis. When suggesting a referral to the specialist team to parents, most therapists say they would like the parents to have a second opinion from a speech and language therapist and educational psychologist who specialise in working with children with complex communication difficulties. If parents then ask if they suspect an autistic spectrum disorder, they say that is something the team will be looking at. The feedback from parents has been extremely positive. They feel that there is a clear pathway of care from the outset that is holistic and meets the needs of the whole family during a time that, for most families, is very traumatic. Offering intensive support initially, promoting the implementation of a functional communication system at an early age and giving parents the opportunity to have a better understanding of their child will hopefully equip them to deal with the differences and difficulties of their child as they grow up. In West Lancashire we are meeting the needs and wishes of most parents, and strive continually to improve the service to the children and their parents. Not every family however feels able to accept this amount of input from the outset. Some take longer than others to accept the diagnosis and its implications. We offer these parents as much support and therapy as they feel they can cope with. Hilary Cowan is a speech and Language therapist with West Lancashire NHS Trust, Child Development Centre, Ormskirk District General Hospital, Wigan Road, Ormskirk, West Lancashire.

References
Baird, G., Cass H. & Slonims, V. (2003) Diagnosis of autism. BMJ 327: 488-93. Frost, L.A. & Bondy, A.S. (1994) PECS The Picture Exchange Communication System Training Manual. Le Couteur, A. & Baird, G. (2003) National Initiative for Autism: screening and Assessment (NIASA). National autism plan for children. London: National Autistic Society. Mogford-Bevan, K. (2002) Play Observation Kit (POKIT). Egghead Publishing. Schopler, E. & Mezibov, G.B. (eds.) (1988) Diagnosis and assessment in autism. New York: Plenum Press. Shields, J. (2001) The NAS EarlyBird programme: partnership with parents in early intervention. Autism: Int J Res Pract 5: 49-56.

Training need
As key referrers to our service, the majority of the speech and language therapists are confident in recognising the signs of autism, and some feel it depends on the severity of the presenting signs. New graduates are less confident in recognising the signs, which is a clear training need, and some of the more experienced therapists commented that they dont feel they have the expertise to give par-

Reflections
Do I recognise the need for onward referral for specialist opinion? Do I allocate enough time to initial interviews? Do I help clients prepare for their first contact with our service? 13

SPEECH & LANGUAGE THERAPY IN PRACTICE SUMMER 2004