Creating an Inclusive Society… How Close are We in Relation to Autism Spectrum Disorder? A General Population Survey

BackgroundChildren with autism spectrum disorder are increasingly educated in mainstream classrooms in the United Kingdom (Wilkinson & Twist, Autism and Educational Assessment: UK Policy and Practice. NFER, Slough, 2010), and some employers are now specifically seeking out staff on the autism spectrum. Does that mean that we are living in an inclusive society' [United Nations Department of Economic and Social Affairs (UNDESA), Creating an Inclusive Society: Practical Strategies to Promote Social Integration 2008], in the sense that inequalities are reduced and full economic, social and cultural participation is advanced for individuals with autism?

MethodsA general population survey was conducted to assess how close we, as a society, are to an inclusive society for individuals with autism in Northern Ireland. Public attitudes were examined to (i) visibility and social interaction, (ii) aetiology, needs and interventions, and (iii) rights and resources.

ResultsA stratified, representative sample of 1204 adults took part in the survey; of these, 989 were aware of autism and their attitudes and behavioural projections reflected a mix of acceptance and denunciation. The level of confusion with regard to interventions reflected the general uncertainty within UK policy regarding meeting the needs of individuals on the autism spectrum (International Journal of Disability, Development and Education 61, 134, 2014a).

ConclusionTherefore, it seems that inclusion is working to an extent, but more clarity is needed with regard to adequate education, intervention and support for individuals with autism.

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.

Genetic pleiotropy between multiple sclerosis and schizophrenia but not bipolar disorder: differential involvement of immune-related gene loci

Converging evidence implicates immune abnormalities in schizophrenia (SCZ), and recent genome-wide association studies (GWAS) have identified immune-related single-nucleotide polymorphisms (SNPs) associated with SCZ. Using the conditional false discovery rate (FDR) approach, we evaluated pleiotropy in SNPs associated with SCZ (n=21 856) and multiple sclerosis (MS) (n=43 879), an inflammatory, demyelinating disease of the central nervous system. Because SCZ and bipolar disorder (BD) show substantial clinical and genetic overlap, we also investigated pleiotropy between BD (n=16 731) and MS. We found significant genetic overlap between SCZ and MS and identified 21 independent loci associated with SCZ, conditioned on association with MS. This enrichment was driven by the major histocompatibility complex (MHC). Importantly, we detected the involvement of the same human leukocyte antigen (HLA) alleles in both SCZ and MS, but with an opposite directionality of effect of associated HLA alleles (that is, MS risk alleles were associated with decreased SCZ risk). In contrast, we found no genetic overlap between BD and MS. Considered together, our findings demonstrate genetic pleiotropy between SCZ and MS and suggest that the MHC signals may differentiate SCZ from BD susceptibility.Molecular Psychiatry advance online publication, 28 January 2014; doi:10.1038/mp.2013.195.

Chronic cough as a neuropathic disorder

Chronic cough is a common symptom that can be a daunting challenge for clinicians since treatment of the underlying cause does not always provide adequate relief, an obvious cause can remain elusive, and current antitussives have fairly poor efficacy and undesirable side-effects. Patients with chronic cough typically describe a range of sensory symptoms suggestive of upper-airway and laryngeal neural dysfunction. Additionally, patients often report cough triggered by low-level physical and chemical stimuli, which is suggestive of cough-reflex hyperresponsiveness. Pathophysiological mechanisms underlying peripheral and central augmentation of the afferent cough pathways have been identified, and compelling evidence exists for a neuropathy of vagal sensory nerves after upper-respiratory viral infections or exposure to allergic and non-allergic irritants. In this Personal View, we argue that chronic cough is a neuropathic disorder that arises from neural damage caused by a range of inflammatory, infective, and allergic factors. In support of this idea, we discuss evidence of successful treatment of chronic cough with agents used for treatment of neuropathic pain, such as gabapentin and amitriptyline. Regarding cough as a neuropathic disorder could lead to new, more effective antitussives.

Impact of tooth replacement on the nutritional status of partially dentate elders

OBJECTIVES: The aim of this study was to compare the impact of two different tooth replacement strategies on the nutritional status of partially dentate older patients. Nutritional status was measured using the full version of the Mini Nutritional Assessment (MNA) and the short form of the Mini Nutritional Assessment (MNA-SF).

MATERIALS AND METHODS: A randomised controlled clinical trial was conducted (Trial Registration no. ISRCTN26302774). Partially dentate patients aged 65 years and older were recruited and randomly allocated to the two different treatment groups: the removable partial dentures (RPD) group and the shortened dental arch (SDA) group. Nutritional status was measured using the MNA and MNA-SF administered at baseline and 1, 6 and 12 months after treatment intervention by a research nurse blinded to the treatment group allocation of all participants.

RESULTS: Data collected using the full version of the MNA showed significant improvements in mean MNA scores over the length of the study (p < 0.05). For the entire patient group, there was a mean increase of 0.15 points at 6 months and a further increase of 0.19 points at 12 months. These increases were similar within the treatment groups (p > 0.05). For MNA-SF, the analysis showed that there were no significant differences recorded over the data collection points after treatment intervention (p < 0.05).

CONCLUSION: Tooth replacement using conventional and functionally orientated treatment for the partially dentate elderly showed significant improvements in MNA score 12 months after intervention.

CLINICAL RELEVANCE: Prosthodontic rehabilitation may play an important role in the nutritional status of partially dentate elders.

Comparison of functionally orientated tooth replacement and removable partial dentures on the nutritional status of partially dentate older patients: a randomised controlled clinical trial

OBJECTIVES: The aims of this study were to conduct a randomised controlled clinical trial (RCT) of partially dentate older adults comparing functionally orientated treatment based on the SDA concept with conventional treatment using RPDs to replace missing natural teeth. The two treatment strategies were evaluated according to their impact on nutritional status measured using haematological biomarkers.

METHODS: A randomised controlled clinical trial (RCT) was conducted of partially dentate patients aged 65 years and older (Trial Registration no. ISRCTN26302774). Each patient provided haematological samples which were screened for biochemical markers of nutritional status. Each sample was tested in Cork University Hospital for serum Albumin, serum Cholesterol, Ferritin, Folate, Vitamin B12 and 25-hydroxycholecalciferol (Vitamin D).

RESULTS: A mixed model analysis of covariance (ANCOVA) indicated that for Vitamin B12 (p=0.9392), serum Folate (p=0.5827), Ferritin (p=0.6964), Albumin (p=0.8179), Serum Total Cholesterol (p=0.3670) and Vitamin D (p=0.7666) there were no statistically significant differences recorded between the two treatment groups. According to the mixed model analysis of covariance (ANCOVA) for Vitamin D there was a significant difference between levels recorded at post-operative time points after treatment intervention (p=0.0470). There was an increase of 7% in 25-hydroxycholecalciferol levels recorded at 6 months compared to baseline (p=0.0172). There was no further change in recorded levels at 12 months (p=0.6482) and these increases were similar within the two treatment groups (p>0.05).

CONCLUSIONS: The only measure which illustrated consistent significant improvements in nutritional status for either group were Vitamin D levels. However no significant difference was recorded between the two treatment groups.

CLINICAL SIGNIFICANCE: Functionally orientated prosthodontic rehabilitation for partially dentate older patients was no worse than conventional removable partial dentures in terms of impact on nutritional status.

Impact of tooth replacement strategies on the nutritional status of partially-dentate elders

OBJECTIVE: To investigate the impact of tooth replacement on the nutritional status of partially dentate older patients, and, to compare two different tooth replacement strategies; conventional treatment using removable partial dentures and functionally orientated treatment based on the shortened dental arch.

BACKGROUND: Amongst older patients, diet plays a key role in disease prevention, as poor diets have been linked to numerous illnesses. Poor oral health and loss of teeth can have very significant negative effects on dietary intake and nutritional status for elderly patients. There is evidence that good oral health generally, has positive effects on the nutritional intake of older adults.

MATERIALS AND METHODS: A randomised, controlled clinical trial was designed to investigate the impact of tooth replacement on the nutritional status of partially dentate elders. Forty-four patients aged over 65 years completed the trial, with 21 allocated to conventional treatment and 23 allocated to functionally orientated treatment. Nutritional status was accessed at baseline and after treatment using the Mini Nutritional Assessment (MNA) and a range of haematological markers.

RESULTS: At baseline, relationships were observed between the number of occluding tooth contacts and some measures of nutritional status. As the number of contacts increased, MNA scores (R = 0.16), in addition to vitamin B12 (R = 0.21), serum folate (R = 0.32) and total lymphocyte count (R = 0.35), also increased. After treatment intervention, the only measure of nutritional status that showed a statistically significant improvement for both treatment groups was MNA score (p = 0.03). No significant between group differences were observed from analysis of the haematological data.

CONCLUSION: In this study, prosthodontic rehabilitation with both conventional treatment and functionally orientated treatment resulted in an improvement in MNA score. Haematological markers did not illustrate a clear picture of improvement in nutritional status for either treatment group.

The use of power ultrasound treatment in dry red kidney beans as a means to reduce the rehydration step during canning production while maintaining high nutritional value.

The use of power ultrasound treatment in dry red kidney beans as a means to reduce the rehydration step during canning production while maintaining high nutritional value. IFT Annual Meeting. Chicago, 13-16/7/2013. (Poster

Nutritional Status of older patients attending Cork University Dental School and Hospital

Objectives: This study aimed to gather data on the nutritional status of older patients attending Cork University Dental School and Hospital for treatment in the Restorative Department. Information was also collected about the medical status of the patients including the prevalence of self-reported xerostomia.
Methods: Data was collected by a self-completion questionnaire followed by a brief clinical examination. Nutritional Status was measured using the short version of the Mini Nutritional Assessment (MNA) which recorded patients’ Body Mass Index (BMI). The MNA consists of 6 parameters (including questions relating to patients’ history and anthropometric data) with a maximum total of 14 points. Scores of 12-14 indicate “normal nutritional status” whilst those between 8 and 11 indicate a patient “at risk of malnutrition”. Scores lower than 8 are an indication a patient who is “malnourished”. All patients attending Cork University Dental School and Hospital aged 65 years and older were invited to participate in the study.

Results: A total of 22 subjects participated in this study. Twelve patients were partially dentate with 10 edentulous. The results from the MNA indicate that 11 patients were of “normal nutritional status” with 11 patients identified as being “at risk of malnutrition”. None of the subjects were “malnourished”. Edentate patients generally recorded lower MNA scores than partially dentate patients. In total, 9 patients reported experiencing xerostomia with 8 indicating that they needed to sip liquids to aid swallowing but only 3 had difficulty swallowing food.

Conclusion: This small study indicates that a number of the older patients attending Cork University Dental School and Hospital for dental care may be “at risk of malnutrition”. These findings suggest that nutritional advice and dental care should both be included in an overall package of care for older patients.

Relationships between Oral Health and Nutritional Status of Older Adults

Objectives: The World Health Organisation has highlighted the paucity of research into the oral health needs of older adults. In particular, the relationships between oral health and nutritional status require further investigation and analysis. This study aimed to describe some of the relationships between the number of remaining occluding tooth contacts, oral health related quality of life and nutritional status of partially dentate older adults.

Methods: 45 partially dentate patients aged 65 years and older were recruited to the study after visiting a university dental hospital. An initial dental examination charted the remaining teeth including the number of occluding contacts. Oral health related quality of life was recorded using the 14 item Oral Health Impact Profile. Nutritional status was measured using the Mini Nutritional Assessment (MNA) in addition to biochemical analysis of a haematological sample. Correlation between data values was measured using a Pearson's correlation coefficient (r).

Results: The patient sample was made up of 44% males and 56% females with a mean age of 72.4 years (range 65-84 years). With increasing age the patients' oral health related quality of life scores improved. (r=-0.25) Within the sample the number of occluding tooth contacts ranged from 6 to 11. It was found that as the number of occluding contacts increased, better oral health related quality of life scores were recorded. (r=-0.30) Generally mini nutritional assessment scores improved with increasing numbers of tooth contacts. (r=0.14) In addition, as the number of occluding teeth contacts increased total lymphocyte count (r=0.35), vitamin B12 (r=0.22) and serum folate (r=0.06) all increased.

Conclusions: In older patients increased numbers of tooth contacts are associated with better oral health related quality of life. Increasing numbers of occluding contacts are also associated with better MNA scores and some haematological indicators of nutritional status.