RADIOFÁRMACOS MARCADOS CON 11C:

Introduction

The three SCIP Project studies described in the following chapters hope to add to the emerging research into the effectiveness of preschool interventions that attempt to increase the social opportunities available to children with a diagnosis of ASD through structured interpersonal and environmental support. The SCIP studies differ from the majority of current studies in two main ways. First, they were carried out in non-

specialist preschools that follow the UK early years’ curriculum, and involved staff with

no specific training in meeting the needs of children with ASD. The studies thus attempt to mirror the context in which many young children with a diagnosis of ASD first

experience an educational environment. Second, the unique design of the studies (outlined below) allows for the social communication behaviours observed in the intervention to be looked at in parallel with the child’s social communication behaviours in the preschool setting. This provides evidence about generalization of taught social skills into everyday practices.

Children with a diagnosis of autism spectrum disorder have, by definition, difficulties with social communication and interaction and have difficulties regulating their behaviour with others. These core impairments in sociability will affect a child’s very early experiences and impact on their participation in preschool activities. Inclusion of children in preschools with a diagnosis of ASD has increased the need to address the support necessary to ensure these children can access and benefit from the early years’ curriculum. Observations of staff engagement with children in preschools suggest that children with ASD interact less frequently with staff and peers than neurotypical

children (Wong & Kasari, 2012). Furthermore, staff initiations and responses to children with ASD are no more frequent than they are with other children despite the concerns about children’s interaction difficulties (Keen et al., 2005; Wong & Kasari, 2012).

Early social communication development: effectiveness of small group intervention for preschool children with ASD

The emerging evidence, as outlined in Chapter 3, suggests that targeted early

intervention can increase opportunities for children to develop interpersonal abilities such as sharing attention (e.g. Kasari et al., 2010; Rogers et al., 2014) and this may ‘alter a child’s developmental trajectory towards a more typical path’ (Steiner et al., 2012, p.92. See also Green et al., 2013). Preliminary findings from research in specialist provisions have found that staff are receptive and able to adapt their practices to include new intervention strategies (Kossyvaki, et al., 2014; Wong, 2014). However, very little research has been carried out within non-specialist preschools (Wong, 2014).

Children with ASD are, due to their delayed interpersonal skills, likely to have particular difficulty joining in the group sessions in preschools with anecdotal reports from

parents (personal communication) that some preschools ask for their child to be collected before the group sessions due to their challenging behaviour. Lower engagement with group sessions means that children with ASD miss out on opportunities to interact with peers and adults.

SCIP Study One focusses primarily on the effects of providing a structured small group experience, asking whether such an intervention can increase the ability of children with ASD to engage in everyday preschool activities in non-specialist settings.

Ethics

This study has been ethically reviewed by the National Research Ethics Service (NRES) Research Ethics Committee Number: 12/LO/1072. Site specific approval was given by the local NHS trust and by the preschools involved. Full consent for filming was obtained by staff and parents of children involved in the study, and from parents whose children attended the preschools and therefore might appear in the filmed extracts. All those directly involved were kept informed as the Project progressed. Information and Consent sheets are in Appendix 2.

Early social communication development: effectiveness of small group intervention for preschool children with ASD Main Researcher

The SCIP staff training and the small group intervention were led by the main

researcher, an experienced highly specialist Early Years Speech and Language Therapist (SLT) who has been training staff and running small group intervention for children with ASD for the past 12 years, in collaboration with early years’ specialists.

Participants

There were a total of 7 male participants in the SCIP study aged 2-3 years (Table 4.1).

 4 children with ASD took part in the experimental groups

 I child with ASD acted as a control with the SCIP intervention occurring after the observation period

 2 children acted as single case comparisons: 1 neurotypical and 1 with language delay.

The children are introduced below. Pseudonyms have been used to ensure confidentiality.

Alex is the second of three boys. He lives with his parents. Concerns were raised about Alex’s delayed social communication and interaction by the preschool teacher who was visiting the youngest brother who has Down syndrome. Referrals were made to the Trust’s multi-professional team and his name was given to the main researcher as a potential participant. A place was found at the local children’s centre in November 2012. The main researcher visited the family and preschool, and consent was given to begin filming in January 2013. Alex received support from the preschool teacher and was on the waiting list for speech & language therapy support. His family is bilingual.

Ben is the second born child and lives with his mother. His half-sister is an adult and lives separately. She has a diagnosis of ADHD. Concerns were raised about Ben’s delayed social communication and interaction by his mother. Referrals were made to the Trust’s multi-professional team and his name was given to the main researcher as a potential participant.

Early social communication development: effectiveness of small group intervention for preschool children with ASD

Ben began attending a local community preschool in November 2012. The main researcher visited the family and preschool, and consent was given to begin filming in January 2013. Ben received 2 home visits from a specialist preschool teaching team that included a speech and language therapist, and he was on the waiting list for clinic- based speech & language therapy support. His mother is monolingual (English); his father is bilingual.

Carl is the first born and surviving twin resulting from twin-to-twin transfusion syndrome. He lives with his parents. He began attending a local private preschool in early 2013 and concerns were raised about his delayed social communication and interaction by staff. Referrals were made to the Trust’s multi-professional team and his name was given to the main researcher as a potential participant. The main researcher visited the family and preschool, and consent was given to begin filming in April 2013. Carl received two home visits from a preschool teacher and was on the waiting list for speech & language therapy support. His family is bilingual.

Dino is the first born. He lives with his mother. Concerns were raised about Dino’s delayed language by his mother when he was 2 years old. Referrals were made to the Trust’s multi-professional team and his name was given to the main researcher as a potential participant. A place was found at a local children’s centre. The main

researcher visited the family and preschool, and consent was given to begin filming in April 2013. Dino attended 6 clinic sessions with the local speech and language therapist and he received home visits from an outreach preschool assistant. His mother is

bilingual.

Erik is the eldest of two children. He lives with his parents. Concerns were raised about Erik’s delayed language and interaction by his parents who went initially to visit a private specialist. Referrals were also made to the Trust’s multi-professional team and his name was given to the main researcher as a potential participant.

Early social communication development: effectiveness of small group intervention for preschool children with ASD

Erik began at the local preschool attached to a mainstream school in September 2013. The main researcher visited the family and preschool, and consent was given to begin filming in September 2013. Erik received home support from a specialist preschool teaching team that included a speech and language therapist. His family is bilingual.

Fynn is the youngest child. His elder siblings are adults. He lives with his parents. He began attending his local preschool attached to a mainstream school in September 2013 and concerns were raised by staff as his language and behaviour seemed delayed for his age. Referrals were made to the Trust’s multi-professional team. He was

assessed by the Paediatrician as developmentally delayed. The main researcher met with his mother and preschool, and consent was given to film Fynn as part of a

comparison group. He was on the waiting list for speech and language therapy support. His family is bilingual.

Hari is the second of two children. He lives with his parents. He was identified by the preschool staff as a child who was neurotypical. Informal assessment by a speech and language therapist concluded that his communication was appropriate for his age. The main researcher met with his mother and preschool, and consent was given to film Hari as part of a comparison group. No further assessment or intervention was offered to Hari. His family is bilingual.

Table 4.1 Children’s diagnostic category; age at start of study, and age at diagnosis

Child Name

(not their real names)

Diagnostic category Age at start of study Age at ADOS assessment ALEX ASD 3;00 3;01 BEN ASD 3;00 3;02 CARL ASD 3;08 3;08 DINO ASD 2;06 2;09

ERIK (control) ASD 3;02 3;06

FYNN (comparison) Language delay 3;09 n/a HARI (comparison) Neurotypical 3;06 n/a

Early social communication development: effectiveness of small group intervention for preschool children with ASD Identification and recruitment of children in the experimental and control group

The 5 children with a diagnosis of ASD (4 in the experimental group and 1 control) were recruited from referrals to a multi-disciplinary intake panel in an NHS trust. It is an open referral system. Request had been made to the panel to identify potential research participants and children meeting the research criteria (below) were flagged up. The children identified as potential recruits for the SCIP project were accepted in the order of referral to the multi-disciplinary panel. This resulted, by chance, in an all-male group of children. Statistically, the incidence of males to females with a diagnosis of ASD is 1:4 (NICE Guidelines, 2011). The first 4 children identified formed the experimental group; the fifth child was assigned to the control condition.

Table 4.2 Inclusion criteria for research participants

 Aged 30 months – 46 months at start of study observations

 Meeting the DSM-IV criteria (APA, 2000) for a diagnosis of ASD

 Recently begun at preschool

 No previous experience of small group intervention

 Parent and preschool consenting to research procedures

 Attending a preschool setting for at least 3 sessions a week

 Not receiving intensive private intervention

 No severe/profound visual or hearing impairment

 No significant learning disability (i.e. MA > 18 months)

 Parent’s use and understanding of English language adequate to participate in intervention groups (translations and interpreters were available).

Following initial assessments (see below) of the 5 children, checks were made that they met the project criteria and that families agreed to participate in a research study. The families were contacted to discuss their willingness to participate; to obtain consent, and to confirm suitability for inclusion. Their preschools were also contacted to discuss their willingness to participate, and for consent to film. Information and consent forms are in Appendix 2. No parent or preschool refused permission and all participated for the period of the research project.

Early social communication development: effectiveness of small group intervention for preschool children with ASD

All children were initially assessed by the Speech and Language Therapist and Consultant Paediatrician, following normal clinical practice. The Paediatrician raised with the family the possibility that their child’s behaviour may meet the criteria for a diagnosis of ASD, and that further observations would be made before confirming the diagnosis. This is in line with recommended practices (NICE Guidelines, 2011). All children were invited to an ADOS assessment (Lord et al., 2000; Lord et al., 2012) where they were given a formal diagnosis of autism spectrum disorder following the ADOS procedure. In line with normal clinical practice, parents were supported during the diagnostic process by the local services. The research participants received ‘treatment-as-usual’ from the Speech & Language Therapy Service and the Preschool Teaching Team. Hours of support varied according to the local clinics’ current waiting lists at the time of referral. No family took part in any other research or had support beyond that available to all children in the trust.

The main researcher was involved in all project discussions with families. She was mindful of the parents’ concerns following a diagnosis of an autism spectrum disorder and was available to answer questions and to direct families to local support services. Parents were made fully aware that participation in the research was voluntary and that they may withdraw at any time. Non-participation in the project did not affect the level of local support available. No families withdrew and all children were able to attend the small group sessions. Parents were kept informed about the Project’s development and were shown film extracts at the end of the data collection stage.

Early social communication development: effectiveness of small group intervention for preschool children with ASD Background information and assessments for the children with ASD

Initial assessments of each child followed normal clinical practice. The local trust’s Consultant Paediatricians met with families and took a full case history. In addition, they assessed the child’s developmental level using Griffiths Mental Development Scales (2006). The Speech and Language Therapist met with each family to enhance the case history with additional information about the child’s early language development and language environment. Families were invited to an ADOS assessment (Lord et al., 2000; Lord et al., 2012). Each family had already discussed the diagnosis of an autism spectrum disorder for their child with the professionals involved. The ADOS provided a full description of the child’s levels and overall severity.

Table 4.3 Background information and assessments used at initial consultations

Background Information Medical records providing information about each child’s age, gender, family characteristics, other medical conditions, and involvement of other professionals.

Pre-intervention assessment Clinical Paediatric Assessment including a full case history, medical

examination, discussion with parents about social communication difficulties, and developmental check using Griffiths Mental Development Scales (2006).

Speech and Language Therapy Assessment

Additional case history information about early communication, assessment using semi-structured observations, information about each child’s language environment including other languages heard, and further discussion about social communication difficulties.

ADOS-G-Autism Diagnosis Observation Schedule

ADOS-G assessment, Autism Diagnostic Observation (Lord et al., 2000; Lord et al., 2012)

Early social communication development: effectiveness of small group intervention for preschool children with ASD Griffiths Mental Development Scales (2006)

Intellectual disability is one of the most common co-occurring disorders in ASD (Fernell, Hedvall, et al., 2013; Matson & Shoemaker, 2009) and is an important predictor of outcome (Howlin, Goode, Hutton, & Rutter, 2004; Wallace, & Rogers, 2010). Developmental assessments were performed using Griffiths Mental Development Scales Extended –Revised Edition (Griffiths, 2006). This is the standard developmental assessment tool used for the assessment of children in the local NHS trust clinic. The six sub-scales for the 2 to 8 year age group are: A: locomotor gross motor skills including the ability to balance and co-ordinate and control movement; B: personal-social proficiency in the activities of daily living, level of independence and interaction with other children; C: hearing, receptive and expressive language; D: eye and hand co- ordination, fine motor skills, manual dexterity and visual monitoring skills; E:

performance visuospatial skills including speed of working and precision; F: practical reasoning ability to solve practical problems, understanding of basic mathematical concepts and understanding of moral issues. For each scale a raw score is obtained. The raw scores can be converted into three kinds of standard score: age equivalents, sub-quotients and general quotients, and then into percentile equivalents. Percentile charts allow comparisons for a child within expected normal distribution. Scores falling within two standard deviations from the mean are within the 5th to the 95th percentiles. Children scoring within this deviation from the mean are considered to be within

normal range. Children scoring below the 5th percentile are functioning below two standard deviations to the mean expected for their chronological age. The General Quotient (GQ) is obtained by averaging the raw scores of the sub scales and converting this to an overall age equivalent. This score is divided by the child’s actual chronological age to achieve the GQ.

Preschool children with ASD can have uneven cognitive profiles with lower verbal skills (Hedvall, et al., 2013). Consideration of verbal and non-verbal skills can be more indicative of a child’s strengths and difficulties than an overall developmental quotient which may over or under estimate different areas of a child’s learning ability.

Early social communication development: effectiveness of small group intervention for preschool children with ASD

For this study, results from Griffiths’ scale C (Hearing and Speech) was converted to Verbal Function, and scale D (Eye and Hand Coordination) and scale E (Performance) were converted to Non-verbal Function. The results of the Griffiths Developmental Mental Scales for participants with ASD are recorded below:

Table 4.4 Results from Griffiths Mental Development Scales

Alex Verbal function

Nonverbal function General Quotient

10th centile 25-50th centile 0.79

Ben Verbal function

Nonverbal function General Quotient

<1st centile 10-25th centile 0.76

Carl Verbal function

Nonverbal function General Quotient

<1st centile <1st centile 0.58

Dino Verbal function

Nonverbal function General Quotient

<1st centile <1st centile 0.54

Erik Verbal function

Nonverbal function General Quotient

<1st centile <1st centile 0.65

None of the children were able to perform tasks from the Practical Reasoning Scale. Alex and Ben had uneven developmental profiles that may have skewed the general quotient.

Alex had verbal abilities within the low range and non-verbal abilities within the average range. His overall GQ was within the low range.

Ben had significant impairment in his verbal skills. His non-verbal skills were within the low-average range. His overall GQ was within the low range.

Carl, Dino and Erik all showed significant impairment in both their verbal and non- verbal skills.

For Carl and Erik, the GQ indicates abilities within the mild learning disability range. For Dino, the GQ indicates abilities within the moderate learning disability range.

Early social communication development: effectiveness of small group intervention for preschool children with ASD Speech and Language Therapy assessment

Each child was assessed by a speech and language therapist and additional notes were added to the Paediatrician’s case history. The parent acted as interpreter during the assessment where necessary. Assessment was based on non-standardised observations during play which included opportunities to demonstrate expressive and receptive