Why reinvent the wheel? A behaviour analyst's reflections on pedagogy for inclusion for students with intellectual and developmental disability

The number of children identified as having intellectual or developmental disability is rising worldwide and their education has been found wanting. It has been said that “they simply need better teaching.” At the same time, there is an increasing evidence base that pedagogy that is based on the discipline of behaviour analysis offers the best prospect for individuals diagnosed with autism spectrum disorders. On the basis of this evidence, it is proposed that behaviour analysis should be applied more broadly to improve teaching for all children with intellectual or developmental disability.

Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: Benchmarking Autism Services Efficacy: BASE Project (Volume 3) Secondary Data analysis

1) Executive Summary
Legislation (Autism Act NI, 2011), a cross-departmental strategy (Autism Strategy 2013-2020) and a first action plan (2013-2016) have been developed in Northern Ireland in order to support individuals and families affected by Autism Spectrum Disorder (ASD) without a prior thorough baseline assessment of need. At the same time, there are large existing data sets about the population in NI that had never been subjected to a secondary data analysis with regards to data on ASD. This report covers the first comprehensive secondary data analysis and thereby aims to inform future policy and practice.
Following a search of all existing, large-scale, regional or national data sets that were relevant to the lives of individuals and families affected by Autism Spectrum Disorder (ASD) in Northern Ireland, extensive secondary data analyses were carried out. The focus of these secondary data analyses was to distill any ASD related data from larger generic data sets. The findings are reported for each data set and follow a lifespan perspective, i.e., data related to children is reported first before data related to adults.
Key findings:
Autism Prevalence:
Of children born in 2000 in the UK,
• 0.9% (1:109) were reported to have ASD, when they were 5-year old in 2005;
• 1.8% (1:55) were reported to have ASD, when they were 7-years old in 2007;
• 3.5% (1:29) were reported to have ASD, when they were 11-year old in 2011.
In mainstream schools in Northern Ireland
• 1.2% of the children were reported to have ASD in 2006/07;
• 1.8% of the children were reported to have ASD in 2012/13.

Economic Deprivation:
• Families of children with autism (CWA) were 9%-18% worse off per week than families of children not on the autism spectrum (COA).
• Between 2006-2013 deprivation of CWA compared to COA nearly doubled as measured by eligibility for free school meals (from near 20 % to 37%)
• In 2006, CWA and COA experienced similar levels of deprivation (approx. 20%), by 2013, a considerable deprivation gap had developed, with CWA experienced 6% more deprivation than COA.
• Nearly 1/3 of primary school CWA lived in the most deprived areas in Northern Ireland.
• Nearly ½ of children with Asperger’s Syndrome who attended special school lived in the most deprived areas.

Unemployment:
• Mothers of CWA were 6% less likely to be employed than mothers of COA.
• Mothers of CWA earned 35%-56% less than mothers of COA.
• CWA were 9% less likely to live in two income families than COA.

Health:
• Pre-diagnosis, CWA were more likely than COA to have physical health problems, including walking on level ground, speech and language, hearing, eyesight, and asthma.
• Aged 3 years of age CWA experienced poorer emotional and social health than COA, this difference increased significantly by the time they were 7 years of age.
• Mothers of young CWA had lower levels of life satisfaction and poorer mental health than mothers of young COA.
Education:
• In mainstream education, children with ASD aged 11-16 years reported less satisfaction with their social relationships than COA.
• Younger children with ASD (aged 5 and 7 years) were less likely to enjoy school, were bullied more, and were more reluctant to attend school than COA.
• CWA attended school 2-3 weeks less than COA .
• Children with Asperger’s Syndrome in special schools missed the equivalent of 8-13 school days more than children with Asperger’s Syndrome in mainstream schools.
• Children with ASD attending mainstream schooling were less likely to gain 5+ GCSEs A*-C or subsequently attend university.



Further and Higher Education:
• Enrolment rates for students with ASD have risen in Further Education (FE), from 0% to 0.7%.
• Enrolment rates for students with ASD have risen in Higher Education (HE), from 0.28% to 0.45%.
• Students with ASD chose to study different subjects than students without ASD, although other factors, e.g., gender, age etc. may have played a part in subject selection.
• Students with ASD from NI were more likely than students without ASD to choose Northern Irish HE Institutions rather than study outside NI.

Participation in adult life and employment:
• A small number of adults with ASD (n=99) have benefitted from DES employment provision over the past 12 years.
• It is unknown how many adults with ASD have received employment support elsewhere (e.g. Steps to Work).
•
Awareness and Attitudes in the General Population:
• In both the 2003 and 2012 NI Life and Times Survey (NILTS), NI public reported positive attitudes towards the inclusion of children with ASD in mainstream education (see also BASE Project Vol. 2).

Gap Analysis Recommendations:
This was the first comprehensive secondary analysis with regards to ASD of existing large-scale data sets in Northern Ireland. Data gaps were identified and further replications would benefit from the following data inclusion:
• ASD should be recorded routinely in the following datasets:
o Census;
o Northern Ireland Survey of Activity Limitation (NISALD);
o Training for Success/Steps to work; Steps to Success;
o Travel survey;
o Hate crime; and
o Labour Force Survey.
• Data should be collected on the destinations/qualifications of special school leavers.
• NILT Survey autism module should be repeated in 5 years time (2017) (see full report of 1st NILT Survey autism module 2012 in BASE Project Report Volume 2).
• General public attitudes and awareness should be assessed for children and young people, using the Young Life and Times Survey (YLT) and the Kids Life and Times Survey (KLT); (this work is underway, Dillenburger, McKerr, Schubolz, & Lloyd, 2014-2015).
 

Helping the most vulnerable out of the poverty trap and reducing inequality: Policies, strategies, and services for individuals with Autism Spectrum Disorder, including intellectual and neurodevelopmental disabilities: BASE Project Report (Volume 2) NILT Survey Autism Module

The primary purpose of the BASE Project was to establish how to help individuals with Autism Spectrum Disorder out of poverty by promoting social inclusion. In order to achieve this, a range of methodologies were utilised that aimed to provide a baseline against which the effect of the Autism Act (NI) 2011 and the associated Autism Strategy (2013-2020) and Action Plans can be measured. The BASE Project is reported in 5 volumes. Volume 2 reports on the analysis of the autism module of the Northern Ireland Life and Times (NILT) Survey that assessed public awareness, attitudes, knowledge, and projected behaviours with regard to individuals with ASD (all primary data and technical reports are available at www.ark.ac.uk/nilt/).

The NILT (2012) survey first ever autism module (n=1204) offered a baseline against which the impact of new autism legislation, policies, and strategies can be measured. Key findings:

• 82% awareness: Most people in Northern Ireland are aware of autism (n=989).
• 50% of all participants knew someone with autism personally (n=606).

Of those who were aware of autism:
• 19% had a close family member with autism (n=186), and/or a friends/acquaintance (n=296), and/or a work colleague (n=79) with autism.
• Autism awareness was particularly low for those from ethnic minorities and those with no internet access.
• Awareness of autism specific legislation was low (20%).
• Good levels of knowledge about autism strengths and challenges, slight tendency to overestimate the occurrence of special talents.
• Prevalence of autism was underestimated (62% thought autism was much less prevalent than official figures or did not know).
• Fairly accurate perception about causes of autism, i.e., not caused by poor parenting (84%).
• Strong support for evidence-based behavioural interventions (77%), but confusion about interventions that are not evidence-based (64%).
• Strong positive attitudes towards children and adults in social, educational and employment settings.
• Autism not viewed as necessarily ‘lifelong’ (58%); support for independent living (78%), e.g., driving a car (83%).
• More business for employers who employ people with autism (12%).
• Strong support for families caring rather than residential care (64%).
• Confusion about service responsibility: education (26%) health (33%) or both (28%).

Given increasing prevalence rates of ASD it is important that the general population is aware of autism and able to respond responsibly to the associated strengths and challenges. The results of the NILT (2012) first ever autism module show that the general public was well aware of autism, had positive attitudes, and was relatively knowledgeable about the issues faced by individuals and families affected directly. However, there was a lack of clarity about responsibility for effective service delivery. The NILT results show that a shift in focus is necessary from ‘awareness raising campaigns’ to an approach that delivers clarity with regard to intervention and accountability.

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.

Parent education and home-based behaviour analytic intervention: an examination of parents' perceptions of outcome

There is convincing evidence that applied behaviour analysis (ABA) offers a highly effective form of intervention for children with autistic spectrum disorder (ASD). There is less evidence, however, about how parents perceive and evaluate ABA programmes. In this paper an examination of parents’ perceptions of outcome is reported. Twenty-two questionnaires were completed by two groups of parents. The first group had just completed an introductory course in ABA and were in the early stages of implementing ABA programmes with their children. The second group had been involved in ABA education for more than 2 years. Overall, both groups of parents reported a positive impact of ABA on the lives of their children, their family life, and themselves. The long- term group reported that they had achieved complex goals with their children, whilst the short-term group reported an immediate positive impact on child and family functioning and parental self-esteem. Conclusions are drawn in the context of evidence-based practice.

Survival of juvenile European eels (Anguilla anguilla) transferred among salinities, and developmental shifts in their salinity preference

After their oceanic migration, juvenile European eels Anguilla anguilla enter estuaries as glass eels, develop into pigmented elvers and migrate into fresh water. Fisheries often transfer such eels abruptly between salinities, principally glass eels and elvers from estuarine to fresh water. It is usually assumed that survival rates are high, but this required systematic investigation. Survival was found to be 100% over 21 days of glass eels and semipigmented elvers transferred abruptly from estuary conditions into fresh water, 50% sea water and full sea water. Fully pigmented elvers, however, showed significantly reduced survival when transferred into sea water. Salinity preference experiments with juvenile eels have historically been inconclusive. Here, in a choice chamber design, a clear developmental shift in salinity preference was found, with glass eels preferring 100% sea water, semipigmented elvers showing no clear preference and fully pigmented elvers preferring fresh water. We conclude that eel fisheries enhancement by abrupt transfer of juveniles among salinities is largely vindicated. In addition, developmental shifts in salinity preference have been clarified and this aids in the interpretation of eel migration patterns.

Recapitulation of embryological programmes in renal fibrosis - The importance of epithelial cell plasticity and developmental genes

Chronic fibrosis represents the final common pathway in progressive renal disease. Myofibroblasts deposit the constituents of renal scar, thus crippling renal function. It has recently emerged that an important source of these pivotal effector cells is the injured renal epithelium. This review concentrates on the process of epithelial-mesenchymal transition (EMT) and its regulation. The role of the developmental gene, gremlin, which is reactivated in adult renal disease, is the subject of particular focus. This member of the cysteine knot protein superfamily is critical to the process of nephrogenesis but quiescent in normal adult kidney. There is increasing evidence that gremlin expression reactivates in diabetic nephropathy, and in the diseased fibrotic kidney per se. Known to antagonize members of the bone morphogenic protein (BMP) family, gremlin may also act downstream of TGF-beta in induction of EMT. An increased understanding of the extracellular modulation of EMT and, in particular, of the gremlin-BMP axis may result in strategies that can halt or reverse the devastating progression of chronic renal fibrosis. Copyright (c) 2006 S. Karger AG, Basel.

Music, rhythm, rise time perception and developmental dyslexia: Perception of musical meter predicts reading and phonology

Introduction: Rhythm organises musical events into patterns and forms, and rhythm perception in music is usually studied by using metrical tasks. Metrical structure also plays an organisational function in the phonology of language, via speech prosody, and there is evidence for rhythmic perceptual difficulties in developmental dyslexia. Here we investigate the hypothesis that the accurate perception of musical metrical structure is related to basic auditory perception of rise time, and also to phonological and literacy development in children. Methods: A battery of behavioural tasks was devised to explore relations between musical metrical perception, auditory perception of amplitude envelope structure, phonological awareness (PA) and reading in a sample of 64 typically-developing children and children with developmental dyslexia. Results: We show that individual differences in the perception of amplitude envelope rise time are linked to musical metrical sensitivity, and that musical metrical sensitivity predicts PA and reading development, accounting for over 60% of variance in reading along with age and I.Q. Even the simplest metrical task, based on a duple metrical structure, was performed significantly more poorly by the children with dyslexia. Conclusions: The accurate perception of metrical structure may be critical for phonological development and consequently for the development of literacy. Difficulties in metrical processing are associated with basic auditory rise time processing difficulties, suggesting a primary sensory impairment in developmental dyslexia in tracking the lower-frequency modulations in the speech envelope. © 2010 Elsevier.

Judging pain in infants:behavioural, contextual, and developmental determinants

Caretakers intuitively use various sources of evidence when judging infant pain, but the relative importance of salient cues has received little attention. This investigation examined the predictive significance for judgements of painful discomfort in preterm and full-term neonates of behavioural (facial activity and body movement), contextual (invasiveness of the procedure), and developmental (gestational age) information. Judges viewed videotapes showing infants varying in the foregoing characteristics undergoing heel incisions for routine blood sampling purposes. Findings indicated all but the contextual information contributed uniquely to judgements of pain, with facial activity accounting for the most unique variance (35%), followed by bodily activity and gestational age, each accounting for 3% and 1% of the judgmental variance, respectively. Generally, 71% of the variance in ratings of pain could be predicted using facial activity alone, compared to 30% of the variance using bodily activity alone, 19% by relying on context alone, and 8% by referring to gestational age alone. Noteworthy was the tendency to judge early preterm infants to be experiencing less pain even though they were subjected to the same invasive procedure as the older infants. This finding also runs counter to evidence from developmental neurobiology which indicates that preterm newborns may be hypersensitive to invasive procedures.