Overarching long-term goal(s) for the person with ASD incorporating planning for transition
A thorough assessment of current performance in key developmental and academic/employment/adaptive skills areas
Measurable goals for each specified period (minimum six monthly interval)
A strategy for measuring progress and outline of when periodic progress reports will be provided
Assessment of resources and consideration of which services and educational strategies are to be provided by whom in order to reach, monitor, and assess the goals
A process for the collaborative review and revision of the IP at least on a 6-monthly basis
Goal Setting as a Core Element of Monitoring Progress and Transitions
Intervention and management vary over time, as do their goals and tools that would be used to measure whether goals have been achieved.
Key Ages and Stages
Four main stages in life can be identified that are likely to bring different goals, because of the changing environment, the change in ability, and different priorities of individuals and families. The first is the preschool years, the second the primary years, the third the high school years, and the fourth the adult years. Of course within these stages there are further important divisions, but for ease we will focus on these four in the hope that individual variation due to, for example, ageing can be catered for because of the flexibility of the approach that is being presented.
In the early years the focus will be on developmental impairments in the areas of receptive language, expressive language, social interaction, fine/gross motor skills, cognition, play skills, and adaptive behaviour/personal independence. However, over time, there will be a shift from assessing specific developmental domains and abilities to assessing participation in education, employment, or civic life. Time points for assessments would also deserve special attention in the monitoring process. For example there are well-identified points of stress for the individual with autism and their families when goal-specific assessment and planning would be critical and such time points may include immediately after diagnosis in terms of choice of early intervention, start of school or other educational programmes, transition from one educational setting to another and in particular transition to high school, and then post high school as they move into vocational or career/employment related placements. Issues relating to life skills, personal, social and sexual relationships, driving, and independent living as well as mental health would also deserve due consideration. Further, any other major life event in the life of individuals with autism will create additional needs for themselves and their families, over and above those experienced by the general population. Since it will be difficult to initiate contact with services and agencies for the first time during such times of crisis, specific attention to how families and individuals could easily connect with appropriate agencies at these times needs to be built in to the monitoring framework. Further, monitoring information should always cause professionals to pause and reflect on what could be creating the patterns that are being observed, and how that information would assist in decision making on any changes that needs to be made to the ongoing management plan. Things that might need modification could include the nature, frequency or setting of interventions, the way treatment plan is being coordinated and provided, or the environment, community supports, or other aspects of care. Ongoing monitoring and assessing progress is central to intervention, education and social programmes in ASD, and fundamental to all programmes that include goals.
Fit-for-Purpose Monitoring
An approach that can add value to what we know about appropriate monitoring for different ages and stages of children with autism is consideration of the purpose of monitoring. In this approach, monitoring can be to identify autism, to assess autism interventions, to identify common problems early, or to ensure that ongoing management is maximising opportunities for an individual with autism and their family. Embedding the international classification of functioning, disability, and health with this approach ensures monitoring that includes information about the impairment or well-being, function, and participation as relevant.
Identifying Autism
Monitoring for early signs and symptoms of ASD can assist timely identification and opportunities for early intervention. Although some of these symptoms may be evident from as early as the first year of life, ongoing surveillance is the key to monitoring these symptoms to determine their developmental course and accurate diagnosis . Studies based on the siblings of children with an affected older sibling have indicated delay or differences in early attentional control, emotion regulation, social orienting/approach, and communication development (Brian, Bryson, & Zwaigenbaum, 2015). These domains may also be appropriate targets for early intervention. Some of the main domains of ASD that are relevant to monitoring for symptoms suggestive of autism are described below.
Social communication : It has been suggested that early abnormalities in brain development in autism lead to early low-level deficits in recognition and orientation towards social stimuli which then cascades to lack of social engagement with primary caregivers during infancy and resulting in decreased exposure to the reciprocal social interactions critical for development of typical social behaviour. There is substantial evidence to support the presence of these types of deficits which in turn suggests a need for intervention to support the development of early social engagement and reciprocity designed to minimise divergence from a typical developmental trajectory (Webb, Jones, Kelly, & Dawson, 2014). Emerging evidence indicates that interventions that address early deficits in joint attention and social reciprocity using strategies that involve interpersonal exchange and positive affect, shared engagement with real-life materials and activities, sensitivity to child cues and adult responsivity etc. facilitate the development of age appropriate socio-communicative behaviours.
Restricted Repetitive Behaviours (RRB) : As repetitive and restrictive behaviours are a core symptom of ASD, and can be a significant cause of impairment affecting multiple facets of life, these specific behaviours are frequently targeted by intervention programmes. However, while other core ASD symptoms are strongly related to general developmental level and correlate with cognition and IQ, insistence on sameness does not share this relationship with these variables (S. L. Bishop, Richler, & Lord, 2006; Richler, Huerta, Bishop, & Lord, 2010). Further, RBBs are not unique to ASD but can also occur in other psychiatric and neurological disorders such as obsessive compulsive disorder and Tourette syndrome. In OCD this is driven by a need to relieve anxiety and intrusive thoughts, while in Tourette syndrome this follows a need to relieve a premonitory urge, and in ASD these behaviours are characterised largely by an insistence on sameness and unwavering rigidity in routine. Despite being a major target for therapy, repetitive behaviours and restrictive interests appear to persist in severity over time, even when children show progress in other areas of their symptomatology (Dawson et al., 2010; Vivanti et al., 2014).
Sensory sensitivities : Previously, researchers have shown that there are distinct sensory profiles in autism relating to behaviours associated with sensory reactivity (the intensity of the response to a sensory stimulus) and multisensory integration (combining information from multiple sensory stimuli) which links with specific patterns of behaviours (Lane, Molloy, & Bishop, 2014). This would suggest that specific intervention strategies matching the sensory difficulties in those affected would be beneficial.
Evaluating Interventions
Although it is outside the scope of this chapter to discuss the various behavioural and developmental interventions available, some background is necessary for an understanding of how the success of such interventions and management strategies may be measured.
Current clinical guidelines advise focussing on improvements in the core ASD characteristics, especially social interaction and reciprocal communication, by including techniques to expand the child or young person’s communication, interactive play and social routines, and working with parents, carers, teachers, or peers to facilitate greater understanding of, and responsiveness to, the child or young person’s patterns of communication and interaction (National Institute for Health and Care Excellence, 2013). For the preschool age group some recommended techniques include the integration of play-based strategies with parents, carers, and teachers with therapist modelling and video-interaction feedback to increase joint attention and engagement. Additionally, clinicians, educators, and carers may employ techniques such as pivotal response training, prompting, reinforcement, and discrete trial teaching (Odom et al., 2003) over a short period of time to enact a change in a specific behaviour or to develop a targeted skill.
Typically, in efficacy studies each individual’s developmental skills , cognitive ability , and behaviours that challenge or are unwanted will be assessed at the start and end of intervention. The monitoring tools, also called outcome measures in this context, selected will also reflect the form of intervention chosen. For example, if a child is undergoing a comprehensive treatment mode l (CTM) which is designed to elicit a broad developmental response, progress may be monitored across autism severity and developmental milestones using treatment-specific tools as well as other assessment tools for autism-specific symptoms such as the Social and Communication Questionnaire (SCQ) and Autism Diagnostic Observation Schedule (ADOS) , in addition to using additional measures such as the Mullen Scale of Early Learning (MSEL) and Vineland Adaptive Behaviour Scale (VABS) to monitor overall development and adaptive functioning (Dawson et al., 2010; Eapen, Crncec, & Walter, 2013; Vivanti, Dissanayake, Zierhut, & Rogers, 2013). The measures commonly used in these instances to assess and monitor progress would change over time, and some of the commonly used measures are detailed in Table 6.2. When establishing intervention goals in practice domains as described above, it is important to include, along with overall development, other aspects of functioning, participation, and quality of life, for the individual with autism and their family. In this section we will focus on autism characteristics, development, and abilities and will discuss other key elements of expected outcomes from intervention in later sections.
Table 6.2
Commonly used assessment tools for monitoring progress throughout life
Type of change | Toddlers | Preschool age group | Primary school age | Secondary school age | Adults | |
|---|---|---|---|---|---|---|
Evaluating interventions | Autism characteristics | ADOS—toddler version | ADOS-1 to 4 depending on level of language | ADOS-1 to 4 depending on level of language | ADOS-1 to 4 depending on level of language | ADOS-1 to 4 depending on level of language |
SRS | SRS | SRS | Social Responsiveness Scale-Adult version (SRS-A) | |||
RBS-R | RBS-R | RBS-R | RBS-R | |||
ESCS | ||||||
CARS-2 | CARS-2 | CARS-2 | ||||
SCQ | SCQ | SCQ | SCQ | |||
AIM | AIM | AIM | ||||
ATEC | ATEC | ATEC | ATEC | |||
Development and abilities | ASQ and ASQ:SE | |||||
BSID-III | ||||||
CBCL 1.5–5 | CBCL 1.5–5 | CBCL 6–18, TRF 6–18, and YSR 11–18 | CBCL 6–18, TRF 6–18, and YSR 11–18 | ASR/ABCL | ||
DBC | DBC | DBC | ||||
GMDS | GMDS | GMDS | ||||
MSEL | MSEL | |||||
SB5 | SB5 | SB5 | SB5 | SB5 | ||
WPPSI | WPPSI | WPPSI or WISC-IV | WISC-IV | |||
Communication | CCC-2 | CCC-2 | ||||
CELF-P | CELF-4 | CELF-4 | CELF-4 | |||
CSBS-DP | CSBS-DP | |||||
MacArthur-Bates CDI | ||||||
NRDLS | NRDLS | NRDLS | ||||
PPVT-4 | PPVT-4 | PPVT-4 | PPVT-4 | PPVT-4 | ||
Pragmatics profile | Pragmatics profile | Pragmatics profile | Pragmatics profile | Pragmatics profile | ||
PLS-5 | PLS-5 | PLS-5 | ||||
Adaptive ability | BASC-2 | BASC-2 | BASC-2 | BASC-2 | BASC-2 | |
CBCL 1.5–5 | CBCL 1.5–5 | CBCL 6–18, TRF 6–18, and YSR 11–18 | CBCL 6–18, TRF 6–18 and YSR 11–18 | |||
SDQ | SDQ | SDQ | SDQ | |||
VABS II | VABS II | VABS II | VABS II | VABS II | ||
Early identification of associated conditions | Maladaptive behaviours | DBC | DBC | DBC | ||
ABC | ABC | ABC | ABC | |||
Sleep problems | CSHQ | CSHQ | ||||
Sleep diary | Sleep diary | Sleep diary | Sleep diary | |||
Maximising potential: individual | Function | PEP3 | PEP3 | |||
TRSSA | TRSSA | |||||
Participation | CAPE | |||||
CHORES | ||||||
PICO-Q | ||||||
Maximising potential: family | Stress | DASS | ||||
PSOC | ||||||
PSI/SF | ||||||
Quality of life | PedsQL | PedsQL | PedsQL | PedsQL | ||
QoLA—parent/carer report | QoLA—parent/carer report | QoLA—parent/carer report | QoLA—parent/carer report or self-report version depending on language ability | QoLA—self-report |
Autism Features
Autism Diagnostic Observation Schedule (ADOS)
The Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000) is a standardised tool for the direct observation and measurement of autistic symptomatology. The ADOS consists of a series of investigator-led processes designed to elicit naturalistic social and communicative behaviours from the child. The investigator thus builds a profile of the child’s social communication, social relatedness, play and imagination, and restricted and/or repetitive behaviours. Despite its reputation as the ‘gold standard’ measure of autistic severity , the ADOS was designed as a diagnostic tool to measure relatively stable traits in ASD which are not anticipated to vary greatly over a lifetime. Longitudinal studies have demonstrated the stability of these standardised scores throughout childhood (Chawarska, Klin, Paul, & Volkmar, 2007; Gotham, Pickles, & Lord, 2009; Hedvall et al., 2014). Indeed, even when children demonstrate vast gains in other domains such as expressive and receptive language and adaptive behaviours as a result of an autism-specific intervention, their ADOS scores did not significantly improve (Dawson et al., 2010; Vivanti et al., 2014). While improvements in such measures would undoubtedly indicate robust changes to behaviour, a lack of improvement may indicate insensitivity to subtle improvements and treatment effects, especially when the aim of an intervention does not broadly target ASD, but rather a specific behaviour or outcome. Hence, while the ADOS may help assess the progress of a CTM with limited sensitivity, it is unlikely to accurately reflect progress relating to specific tasks or behaviours. However it can be useful if such progress results in the child no longer reaching a diagnostic status on the repeat ADOS assessment.
Social Responsiveness Scale (SRS)
The Social Responsiveness Scale (Constantino & Gruber, 2005) is a brief quantitative measure of autism severity in children and teenagers. It focuses on the degree of impairment in the core ASD domains of social awareness, social information processing, reciprocal social communication, social anxiety/avoidance, and stereotypic behaviour/restricted interests. The SRS compares favourably with the ADI-R (Constantino et al., 2003); however it is scored based on the observations of parents or teachers, and hence has the limitation of lacking clinician input.
Repetitive Behaviour Scale—Revised (RBS-R)
The Repetitive Behaviour Scale—Revised is a parent-completed questionnaire which characterises the severity of repetitive behaviours across six subdomains: stereotyped behaviour, self-injurious behaviour, compulsive behaviour, ritualistic behaviour, sameness behaviour, and restricted behaviour (Bodfish, Symons, Parker, & Lewis, 2000).
Early Social Communication Scales (ESCS)
The Early Social Communication Scales (Mundy et al., 2003) is used to measure social behaviour and joint attention skills in a structured setting. During the ESCS, the child is seated at a table while an experimenter presents a range of standardised probes assessing social responsiveness and communication skills, including initiation and response to joint attention, as reflected in frequencies of child alternating gaze, showing, and pointing to share. The ESCS has shown good reliability and validity and has been used in studies of children with ASD, including treatment studies (Kasari, Freeman, & Paparella, 2006; Remington et al., 2007; Salt et al., 2002).
Childhood Autism Rating Scale (CARS)
Childhood Autism Rating Scale (Schopler, Reichler, & Renner, 1986) and the revised version, CARS2 (Schopler, Bourgondien, Wellman, & Love, 2010), can be completed by a parent, teacher, or a clinician, based on subjective observations of the child’s behaviours. Based on the findings of a bimodal distribution among these scores, the scale includes criteria to differentiate between those with mild to moderate autism and those with severe autism (Schopler, Reichler, DeVellis, & Daly, 1980).
Social Communication Questionnaire (SCQ )
The Social Communication Questionnaire (SCQ) (Berument, Rutter, Lord, Pickles, & Bailey, 1999), formerly known as Autism Screening Questionnaire, is based on a well-validated parent interview, the original Autism Diagnostic Interview (ADI; Rutter, Le Couteur, & Lord, 2003). The SCQ covers the areas of communication, reciprocal social interaction, and restricted and repetitive behaviours and interests, which are core diagnostic criteria for autism. There are two versions: a ‘current’ version designed for children under 5 years and a ‘lifetime’ version designed for children ≥5 years. The current version is helpful for treatment/planning in that it indicates the type and severity of the characteristics of autism in individual children. The items can be used for setting treatment goals for example, if the child has no ability to take turns in a conversation, conversational turn taking can be targeted in the intervention programme. The SCQ can be used for monitoring purposes as it can measure change over time.
Autism Treatment Evaluation Checklist (ATEC )
The Autism Treatment Evaluation Checklist (ATEC) (Rimland & Edelson, 1999) is another tool that can be used by clinicians and parents to evaluate treatment outcomes and to monitor progress in ASD. The ATEC can be accessed and scored online by parents, teachers, and/or other primary carers (http://legacy.autism.com/ari/atec/atec_report.htm). The scale covers 77 items in the areas of communication, sociability, sensory and cognitive awareness, and health and physical behaviour, and also provides a total score.
Autism Impact Measure (AIM )
The Autism Impact Measure (AIM) (Kanne et al., 2014) is a 25-item questionnaire that has been specifically designed to have greater sensitivity detecting changes in core ASD symptoms. It asks respondents to recall a 2-week period with items rated on two corresponding 5-point scales of frequency and impact of core ASD symptoms. Using exploratory factor analysis, four factors were found namely (1) repetitive behaviours, (2) odd/atypical behaviours, (3) communication/language, and (4) social/emotional reciprocity, and these were observed to concur with the reports of symptom severity/impact.
General Development and Ability
In infants and toddlers , the symptoms of an ASD may only be starting to become apparent, and any differences between an affected child and their peers may not seem too extreme. However, over time the differences may become more pronounced and a child with ASD may lag further behind their peers. This is one of the greatest opportunities for an early intervention, as it provides intensive support for young children to make more early gains, potentially before their developmental trajectories uncouple from those of their peers. To focus on improving developmental outcomes in young children, it is essential to accurately monitor and measure progress in the five developmental domains of early childhood: physical, social, emotional, language, and cognitive skills. A child with ASD may experience general or specific impairments in any or all of these domains and associated subdomains, from a particular sensory processing abnormality to pervasive intellectual impairment.
In addition to monitoring core symptoms and psychopathology in children with ASD, it is also important to take into consideration a child’s motor profile in their overall management plan. In a study by Papadopoulos et al. (2011) of fifty-three 7–12 year old children with ASD, a significant positive correlation between impairments in motor proficiency (in particular ball skills and balance) and DBC measures of emotional/behavioural disturbance, autistic symptoms, and communication disturbance was reported. These authors suggest that adjunct motor measures (in particular balance) may be a useful objective measure to help monitor the overall developmental profile of a child with ASD over time (Papadopoulos et al., 2011). For children with ASD who have significant motor impairment that might range from problems with clumsiness, difficulty with motor planning, handwriting difficulties, and dystonia, there is a need for clinical planning around whether motor symptoms should be directly addressed, for example, through intensive occupational therapy, or whether these difficulties should be ‘monitored’ over time. This is particularly relevant in the primary school years. Given that motor impairment is associated with reduced physical activity and participation, there are health as well as psychological benefits for ongoing monitoring of a child’s motor development. By monitoring a child’s functioning in relation to their individual motor profile and potential limitations, a holistic management approach can be put in place that includes the optimisation of activity and participation (Emck, Bosscher, Beek, & Doreleijers, 2009).
The Mullen Scales of Early Learning
The Mullen Scales of Early Learning (MSEL ; Mullen, 1995) is a standardised, normed developmental assessment for children aged birth through 68 months. It provides an overall index of ability, the Early Learning Composite, and subscale scores of Receptive Language, Expressive Language, Visual Reception, and Fine Motor skill.
Ages and Stages Questionnaire
The Ages and Stages Questionnaire (ASQ; Squires, Bricker, & Twombly, 2009): Parents or caregivers can use the ASQ questionnaires to check a child’s general development and the ASQ:SE (socio-emotional) questionnaire to check a child’s social emotional development.
The Bayley Scales of Infant Development
Bayley (1993): The Bayley Scales of Infant Development (BSID-III is the current version) is a standard series of measurements used to assess the motor (fine and gross), language (receptive and expressive), and cognitive development of children aged 0–3 years.
Griffiths Mental Developmental Scale
Griffiths Mental Developmental Scale (third edition; Griffiths, 2006): The six subscales include Locomotor (gross motor skills including the ability to balance and to co-ordinate and control movements); Personal-Social (proficiency in the activities of daily living, level of independence, and interaction with other children); Language (receptive and expressive language); Eye and Hand Co-ordination (fine motor skills, manual dexterity, and visual monitoring skills); Performance (visuospatial skills including speed of working and precision), and Practical Reasoning (ability to solve practical problems, understanding of basic mathematical concepts, and understanding of moral issues).
Cognitive Ability and Intelligence
There is considerable variability in levels of cognition in individuals with ASD and therefore accurate intelligence assessment is important in treatment planning .
Stanford-Binet Intelligence Scales: Fifth Edition
The Stanford-Binet Intelligence Scales : Fifth Edition (SB5 ) (Roid, 2003) is a widely used standardised intelligence scale which assesses multiple components of intelligence. It includes ten subtests, five verbal and five nonverbal, which can be used to determine verbal intelligence (VIQ), nonverbal intelligence, and full-scale or abbreviated intelligence. Although it was originally thought that most people with ASD also suffered comorbid intellectual disability (ID; i.e. IQ < 70), more recent estimates have reduced this co-occurrence to approximately one third to one half of cases (Centers for Disease Control and Prevention, 2014). Additionally, epidemiological studies indicate that more than a quarter of participants with ASD have average or above average intelligence (i.e. IQ > 85) (Charman et al., 2011).
WISC/WPPSI and Other Tests of Intelligence
Wechsler Pre-school and Primary Scale of Intelligence (WPPSI; Wechsler, 1989, 2002) or the Wechsler Intelligence Scale for Children (WISC-IV; Wechsler, 2003) as appropriate; for those unable to be tested or those not reaching standardised T scores to derive an IQ score, an IQ estimate, a best estimate of the Developmental Quotient (DQ) can be calculated using any of the general developmental tests as above using the equation Mental Age (MA) divided by the chronological age and multiplied by 100.
Communication
Autism is unique in that essentially the development of communication may not be directly linked to the development of language. More than in any other condition, in autism, language development may occur separately from communication development (Jordan & Jones, 2012). Very young children with autism usually show divergent communication development with differences in the development of joint attention and early engagement with others (Charman & Stone, 2008; Toth, Munson, Meltzoff, & Dawson, 2006). Also, young children with autism are less interested in people than in objects (Kasari et al., 2006) and primarily, as a result of paying less attention to other people in their environment, have poor early social communication development. This extends to the development of language; for example at the most basic level the learning of the names for things is highly dependent on joint attention and interaction with primary caregivers. Assessment of communication in autism needs to be broad and address all aspects of communication including language development and the structure and function of language and communication. For preverbal, nonverbal, and verbal individuals with autism, assessment of communication as well as of language development is essential. Accurate assessment of receptive and expressive communication is also important because unlike other condition, in autism receptive language is often more impaired than expressive language (Hudry et al., 2010). This can be misleading when those around the child or adult with autism assume, not unreasonably, that they understand at the same level at which they speak. Children with autism appear to learn language primarily through a process of rote learning chunks of language, which they associate with particular internal and external contexts. Speech often gives a stereotyped impression and echolalia is common. It is important to assess exactly what the child understands and what cues they follow. They may be expert at interpreting visual cues and contextual information while understanding very little of what is actually being said to them.
Children’s Communication Checklist (CCC)
Children’s Communication Checklist (CCC-2 ; D. Bishop, 2003) is a 70-item questionnaire completed by a caregiver and screens for communication problems in children aged 4–16 years. The test evaluates a broad range of language skills such as recalling and formulating sentences, word classes, and word definition and understanding spoken paragraphs and semantic relationships. There is also a version for older adolescents and adults.
Clinical Evaluation of Language Fundamentals (CELF)
There are preschool and 5–22 years version of this assessment (CELF-P; Elisabeth H. Wiig, Secord, & Semel, 2004), for preschool to early school age children. Subtests include basic concepts, sentence and word structure, formulating labels, recalling meaning, and linguistic concepts.
CELF-5 (E. H. Wiig, Semel, & Secord, 2013) is a quick and accurate assessment for ages 5–22 years to assess for a language disorder. The test evaluates a broad range of language skills such as recalling and formulating sentences, word classes, and word definition and understanding spoken paragraphs and semantic relationships. The current battery of tests provides a comprehensive language assessment including a robust assessment of pragmatics using observations and interactive activities.
Communication and Symbolic Behaviour Scales Developmental Profile
Communication and Symbolic Behaviour Scales Developmental Profile (CSBS-DP ; 6 months–6 years) (Wetherby & Prizant, 2002): This assessment is a combination of parent report and face-to-face evaluation of the child. The assessment measures seven language predictors: emotion and eye gaze, communication, gestures, sounds, words, understanding, and object use and is sensitive to early delays in social communication, expressive speech/language, and symbolic functioning.
MacArthur-Bates Communication Development Inventories
The MacArthur-Bates Communication Development Inventories (Fenson et al., 2007) (1–3), 3–37 months: The assessment consists of three inventories using parent report to probe use of gestures, words, and sentence.
Reynell Developmental Language Scales
The New Reynell Developmental Language Scales (NRDLS ; Edwards, Letts, & Sinka, 2011): This is a direct assessment of the child designed to identify speech and language delays and impairments in very young children, from 2 to 7 years 5 months.
Peabody Picture Vocabulary
The Peabody Picture Vocabulary Test 4 (PPVT-4 ; L. M. Dunn & Dunn, 2012): Measures listening comprehension of vocabulary in standard English from 2.5 years.
Pragmatics Profile of Everyday Communication Skills in Children
The Pragmatics Profile of Everyday Communication Skills in Children (Dewart & Summers, 1996): Version for preschool aged children 0–4 years, school aged children 5–10 years, and adolescents/adults. The assessments are structured interviews with a primary carer designed to assess child communicative functions, response to communication, interaction and conversation, and contextual variation.
Preschool Language Scale
The Preschool Language Scale fifth ed (PLS5 ) (Zimmerman, Steiner, & Evatt Pond, 2011), birth to 7 years: This is a direct assessment of the child designed to evaluate maturational lags, strengths, and deficiencies by testing auditory comprehension and verbal ability.
Adaptive Functioning
There is some evidence to suggest that there is a cognitive advantage over adaptive functioning in children with ASD, and similar results have been found in a recent study in an older sample (Matthews et al., 2015). Compared to communication and socialisation skills , adults with ASD showed relative strength in daily living skills although this was not true for adolescents. However, all standard scores were well below average, regardless of their level of cognitive functioning which suggests the need for interventions that target adaptive functioning across the lifespan.
Vineland Adaptive Behaviour Scale (VABS)
One critical indicator of an individual’s functioning and progress is their ability to translate their theoretical intelligence to practical intelligence, or their cognitive potential into real-life skills, hereafter defined as adaptive behaviour. The Vineland Adaptive Behaviour Scales (Sparrow, Balla, & Cicchetti, 1984) and (VABSII; Sparrow, Cicchetti, & Balla, 2005) assesses social, communication, motor, and daily living skills reflective of an individual’s ability to navigate life in the community. It is administered by parent interview and provides both age-equivalent and standardised scores.
Behaviour Assessment System for Children (BASC)
The Behaviour Assessment System for Children (second ed.) (BASC-2; 2004) can be used to measure adaptive functioning across core domains including adaptive/functional skill development and to monitor change. The assessment focuses on the measurement of adaptive and maladaptive behaviour, which are important outcomes for intervention programmes. It is standardised (valid and reliable) for age range 2–21 years. For those in the 2–5 year age range, the 134–160 items cover the key areas of activities of daily living, adaptability, aggression, anxiety, attention problems, depression, functional communication, hyperactivity, social skills, somatisation, and withdrawal. There is a parent rating form and a teacher form (except activities of daily living scale) and the parent and teacher observation forms can be used to measure change following an intervention programme or over time.
Child Behaviour Checklist (CBCL)
The Child Behaviour Checklist (Achenbach & Rescorla, 2001) version 1.5–5 years (CBCL 1.5–5) or version 6–18 (CBCL 6–18) can be completed by parents and others who see the children in home-like settings. It obtains parents’ reports of children’s competencies and problems.
The Teachers Report Form 6–18 (TRF 6–18) is completed by teachers and other school staff who have known the child in school settings for at least 2 months. It obtains teachers’ ratings of many of the problems rated on the CBCL 6–18, plus additional items appropriate for teachers.
The Youth Self-Report 11–18 (YSR 11–18) is completed by 11–18 year olds to describe their own functioning. It has most of the same competence and problem items as the CBCL 6–18, and open-ended responses to items covering physical problems, concerns, and strengths.
All forms have parallel Internalising, Externalising , and Total Problems scales. The TRF also includes Inattention and Hyperactivity-Impulsivity subscales. The following cross-informant syndromes can be derived from the forms: Anxious/Depressed; Withdrawn/Depressed; Somatic Complaints; Social Problem; Thought Problems; Attention Problems; Rule-Breaking Behaviour; Aggressive Behaviour.
Strengths and Difficulty Questionnaire (SDQ)
The Strengths and Difficulty Questionnaire (SDQ; Goodman, 1997) is a brief 25-item parent report measure to elicit emotional and behavioural attributes of children and adolescents ages 2 through 17 years. The SCQ has five subscales namely emotional problems, conduct problems, hyperactivity/inattention, peer relationship problems, and prosocial behaviours and there is also a total difficulty score based on 20 items.
Early Identification of Associated Conditions
Maladaptive or Disruptive Behaviours
The presence of maladaptive behaviours in young people with ASD can significantly limit engagement in treatment programmes, as well as compromise future educational and vocational opportunities (Fulton, Eapen, Črnčec, Walter, & Rogers, 2014). Therefore decreasing such behaviours or replacing these with alternative adaptive behaviours will be a critical focus for interventions and subsequent monitoring. Dominick, Davis, Lainhart, Tager-Flusberg, and Folstein (2007) reported aggressive behaviours including hitting, kicking, and pinching and self-injurious behaviours (SIB) such as head banging, hitting oneself, and biting oneself, in around a third of children with ASD. More than three-quarters of children with these behaviours showed aggressive behaviours both at home and outside the home. Furthermore, around 70 % had experienced a period of severe temper tantrums and for 60 % of children with tantrums these occurred on a daily basis and were a constant, rather than episodic. Several authors have suggested that there is a relationship between inability to communicate and the prevalence of maladaptive behaviours (Dominick et al., 2007) and self-injurious behaviours (Vismara & Rogers, 2010). Both internalised behaviours (e.g. self-injurious behaviour) and externalised behaviour (e.g. aggression to others) may also be a response to environmental stress (Bartak, Bottroff, & Zeitz, 2006). Thus disruptive and challenging behaviours and their appropriate management and ongoing monitoring have significant implications for integration in educational settings and for the overall functioning of the person with ASD.
Developmental Behaviour Checklist (DBC)
The Developmental Behaviour Checklist (DBC) -Parent/Caregiver or Teacher Version (DBC-P and DBC-T; Einfeld & Tonge, 2002) is a 96-item checklist of behavioural and emotional problems in children aged between 4 and 18 years with developmental difficulties.
The DBC provides an excellent measure of emotional and behavioural problems in both children and adolescents with developmental conditions (Einfeld & Tonge, 1992, 1995, 2002). The DBC can be used for children with intellectual disabilities as well as for children who are cognitively able (Brereton, Tonge, Mackinnon, & Einfeld, 2002; Einfeld & Tonge, 2002). The DBC has 96 items providing quantitative measures of behavioural and emotional disturbance. Each item is scored on a scale ranging from 0- ‘not true as far as you know’ to 3- ‘often true or very true’. The total score of the DBC provides a measure of overall psychopathology. There are five subscales: Disruptive/Antisocial, Self-absorbed, Communication Disturbed, Anxiety, and Social Relating (Dekker, Nunn, & Koot, 2002). In addition to measuring psychopathology, the DBC can be used as an autism screening tool (the DBC-ASA) in children as young as 4 years of age (Brereton et al., 2002).
The DBC also has screening measures that are able to identify and monitor individuals at risk of developing comorbidities. One example of use of the DBC is to monitor comorbid ADHD symptomology (see Gargaro et al., 2014). Boys with ASD may be particularly at risk for ADHD comorbidity and require further monitoring, than age, IQ, and cognitively and academically matched girls with ASD (May, Cornish, & Rinehart, 2014).
Aberrant Behaviour Checklist (ABC)
The Aberrant Behaviour checklist (ABC ; Aman, Singh, Stewart, & Field, 1985): This scale was primarily developed to assess drug and other treatment effects on severely mentally retarded individuals. Factor analysis of the 58 item has yielded five factors namely (1) Irritability, Agitation, Crying; (2) Lethargy, Social Withdrawal; (3) Stereotypic Behaviour; (4) Hyperactivity, Noncompliance; and (5) Inappropriate Speech.
Adult Behaviour Checklist (ABCL)
The Adult Self-Report (ASR/18–59) and Adult Behaviour Checklist (ABCL/18–59); (Achenbach & Rescorla, 2003): The ASR is used to obtain self-reports from adults on aspects of their adaptive functioning and problems. The ABCL on the other hand is used to obtain reports from people who know the adult person with problems well. There are normed scales for adaptive functioning, as well as empirically based syndromes such as Anxious/Depressed, Attention Problems, Withdrawn, Aggressive Behaviour, Somatic Complaints, Rule-Breaking Behaviour, Thought Problems, and Intrusive problems as well as Internalising and Externalising problems. The profiles also include a Critical Items scale consisting of items of particular concern to clinicians and a total score.
Tics
Available evidence from the literature suggests that tics occur in around 20–40 % of individuals with ASD, although there is significant variability in the extant research (Eapen, Črnčec, McPherson, & Snedden, 2013). Perhaps the largest and best controlled study to date has reported a rate of 6.5 % for the occurrence of Tourette syndrome in ASD (Baron-Cohen, Scahill, Izaguirre, Hornsey, & Robertson, 1999) with considerably higher rates of up to 50 % for tics when individuals with intellectual disability and ASD are considered (Eapen, Robertson, Zeitlin, & Kurlan, 1997). Awareness of tic disorders will allow for tics to be sensitively managed and possible comorbidities anticipated and differentiated from tics, which in turn can lead to the minimum possible disruption to the young person. For example, tics may be mistaken for fidgetiness that can occur with ADHD, and coprolalia may attract negative consequences such as disciplinary action in children and stigma and social embarrassment in adults. Pharmacological treatment for tic disorders may include clonidine, especially when ADHD presents comorbidly, or antipsychotic agents such as risperidone when there are tics and comorbid behavioural problems such as irritability, aggression, and insomnia (Eapen & Gururaj, 2005). The presence of comorbid OCD would need attention and may necessitate treatment with specific serotonin reuptake inhibitors, while comorbid ADHD would necessitate the use of stimulants (with caution, monitoring for tic exacerbation) or atomoxetine. The risk of drug interactions and side effects may be increased in those with brain damage or epilepsy, and gradual increase in dosage with close monitoring is recommended in these situations (Eapen & Črnčec, 2009). Psychotherapeutic techniques such as cognitive-behaviour therapy for OCD or comprehensive behavioural intervention for tics (CBIT) have established efficacy (Piacentini et al., 2010; Watson & Rees, 2008); however, outcomes may be constrained in individuals where poor cognitive and learning abilities, and hyperactivity, are a factor. Yale Global Tic Severity Rating Scale (YGTSS; Leckman et al., 1989) can be a useful tool in monitoring progress following intervention for tics.
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