There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and ...quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.
Autistic children grow to become autistic adults, and autism is increasingly diagnosed in adulthood and later life. This qualitative study aimed to understand experiences of autism throughout ...adulthood. A national cohort study of autistic adults and relatives of autistic adults (ASC-UK), enabled purposive recruitment of a diverse sample. Semi-structured interviews were conducted with 29 autistic adults (aged 20-71 years), mostly diagnosed in adulthood, and 16 relatives (aged 31-81 years) of autistic adults diagnosed across both childhood and adulthood (including some with learning disability). Interview topics included health, relationships, education, employment, quality of life and everyday experiences. Thematic analysis of the accounts of the autistic adults identified six key themes relating to their experiences: (1) diagnosis as validating yet limiting; (2) supportive and non-supportive social agents; (3) the "invisibility" of the needs of autistic adults; (4) health in the context of autism; (5) staying 'outside' the circle; and (6) multiple lives with autism. Data from relatives about autistic adult experiences gave additional perspectives on these themes. Experiences reported in other studies-of 'difference' from others, challenges of social engagement, and learning to 'conform' to society's expectations-were evident and relevant to male and female autistic adults, across all age groups, and unrelated to stage of life when diagnosed. Some expressed disappointment with their lives, but others were proud of their achievements. Education and employment, whilst challenging for many, were also rewarding for some. Health care and social services were often experienced as inaccessible, inappropriate, or lacking understanding of the individual's needs. We conclude that greater public understanding of autism as experienced in adulthood is needed. Key priorities are improving the availability of 'appropriate' health and social care services for autistic adults and families, and providing practical support to enable enhanced participation in life.
Cohort Profile: The Gateshead Millennium Study PARKINSON, Kathryn N; PEARCE, Mark S; DALE, Anne ...
International journal of epidemiology,
04/2011, Letnik:
40, Številka:
2
Journal Article
Recenzirano
Odprti dostop
Cohort Profile: The Gateshead Millennium Study No Abstract required
Background and aims
Despite recent gains in the amount and quality of early autism intervention research, identifying what works for whom remains an ongoing challenge. Exploiting data from the ...Preschool Autism Communication Trial (PACT), we undertook secondary analysis to explore prognostic indicators and predictors of response to one year of PACT therapy versus treatment as usual within this large and rigorously characterised cohort recruited across three UK trial sites.
Methods
In this secondary analysis of variability in child gains on the primary trial outcome measure – social-communication symptom severity – we used a pragmatic and data-driven approach to identify a subgroup of children who showed reliable improvement and a subgroup showing clear lack thereof. We then tested which among several baseline child and family factors – including measures routinely collected in research trials and clinical practice – varied as a function of child outcome status and treatment group.
Results
Greater baseline child non-verbal ability was a significant prognostic indicator of symptom reduction over time (i.e. irrespective of treatment group). By contrast, parent synchrony presented as marginal predictor, and trial recruitment site as a significant predictor, of differential outcome by treatment group. Specifically, lower parent synchrony showed some association with poorer outcomes for children from families assigned to treatment as usual (but with no such effect for those assigned to PACT). Similarly, children at one recruitment site were more likely to have poorer outcomes if assigned to treatment as usual, compared to children at the same site assigned to PACT.
Conclusions
The current data contribute to an evidence base indicting that early non-verbal ability is a robust indicator of generally better prognosis for young children with autism. Lower parent synchrony and a broadly more deprived socio-geographical context may inform the appropriate targeting of PACT. That is, given that the former factors predicted poorer outcome in children from families assigned to treatment as usual, the receipt of a relatively low-dose, parent-mediated and communication-focused therapy might be developmentally protective for young children with autism. Nevertheless, results from this study also highlight the paucity of meaningful predictors of outcome among routine clinical characterisation measures such as those investigated here.
Implications
Understanding the factors associated with differential treatment outcomes is critical if we are to individualise treatment decisions for children with autism. Inherently tied to this objective is a need to delineate those factors which specifically predict positive response (or lack of response) to one or other treatment option, versus those that indicate generally better (or poorer) prognosis, irrespective of treatment.
A Delphi consensus methodology was used to adapt a screening tool, the Social Responsiveness Scale- 2 (SRS-2), for use with deaf children including those whose preferred communication method is sign ...language. Using this approach; 27 international experts (The Delphi International Expert Panel), on the topic of autism spectrum disorder (ASD) in deaf people, contributed to the review of item content. A criterion for agreement was set at 80% of experts on each item (with 75% acceptable in the final fourth round). The agreed modifications are discussed. The modified SRS-2 research adaptation for deaf people (referred to here as the "SRS-2 Deaf adaptation") was then translated into British Sign Language using a robust translation methodology and validated in England in a sample of 198 deaf children, 76 with Autism Spectrum Disorders (ASD) and 122 without ASD. The SRS-2 Deaf adaptation was compared blind to a NICE (National Institute for Health and Care Excellence) guideline standard clinical assessment. The area under the Receiver Operating (ROC) curve was 0.811 (95% CI: 0.753, 0.869), with an optimal cut-off value of 73, which gave a sensitivity of 82% and a specificity of 67%. The Cronbach Alpha coefficient was 0.968 suggesting high internal consistency. The Intraclass Correlation Coefficient was 0.897, supporting test-retest reliability. This performance is equivalent to similar instruments used for screening ASD in the hearing population.
To examine whether adiposity is associated with an impaired quality of life (an individual's perception of their life) in general population samples in early adolescence.
Relationships between a ...direct measure of adiposity (fat mass index from bioimpedance) and a proxy measure (waist circumference), and a generic (KIDSCREEN-27) and a weight-specific measure of health-related quality of life (HRQoL, Impact of Weight on Quality of Life-Kids (IWQOL-Kids)) were examined in a longitudinal population-based cohort of young adolescents aged 12 years (n=519). The effects of change in adiposity over time (from 7 years and 9 years) were also examined (n=331-445 in longitudinal analyses).
Impairment in HRQoL was associated with current adiposity but it was not predicted by earlier adiposity. At 12 years, higher adiposity was associated with lower Physical Well-Being on KIDSCREEN-27, and with lower Total Scores on the weight-specific IWQOL-Kids instrument, the latter particularly in girls.
Health and education professionals need to be aware in their clinical practice that higher adiposity impairs HRQoL in general populations of young adolescents. Further research would be useful to determine whether or not children of primary school age self-reporting lower HRQoL are more likely to develop higher adiposity later in adolescence or early adulthood.
Many autistic children and young people need extra support with social skills. Social skills programmes, such as LEGO® based therapy (LBT), are commonly used to help with these difficulties. The aim ...of this study was to examine the acceptability of LBT using qualitative interviews and questionnaires with facilitators and parents/guardians on behalf of autistic children and young people. Acceptability was measured in line with constructs of the Theoretical Framework of Acceptability. Questionnaires were analyzed descriptively and between group comparisons were undertaken using the Mann–Whitney U Test. Telephone interviews were undertaken with a sub‐sample of facilitators. All interviews were recorded, transcribed verbatim, and framework analysis was performed by two researchers supported by NVivo. The questionnaire response rate was 80% for facilitators and 77% for parents/guardians. Overall acceptability, measured on a 1–5 (minimum–maximum) scale, was high for both facilitators and parents/guardians with a median (range) of 5 (4–5) and 4 (3–5), respectively. Facilitators rated the acceptability of the programme significantly higher overall than parents (p < 0.001). Facilitators reported that participants and wider school staff viewed the programme positively. They observed improvements in communication and social skills during the sessions. Potential barriers to programme delivery, such as resources and staff schedules, were identified but facilitators reported that these challenges did not outweigh the benefits. There is increasing emphasis on the role of schools in seeking to improve social outcomes for autistic children therefore this high degree of acceptability makes this an attractive school‐based programme for schools, autistic children and their families.
Lay Summary
Social skills programmes, such as LEGO® based therapy (LBT), are often used to help autistic children and young people with their social skills. The acceptability of LBT with school staff and parents/guardians on behalf of children and young people was explored using interviews and questionnaires. Our results show that LBT is viewed as a highly acceptable programme that can help autistic children and young people improve their communication and social skills.
Of a cohort of 104 children with Autism, PDD-NOS or specific language disorder, recruited at age 2-3 years of age, only three appeared to meet diagnostic assessment criteria for Asperger syndrome ...(AS). The children were followed up at 4-5 years, and assessments at both time points included the Autism Diagnostic Interview (ADI-R), the Autism Diagnostic Observation Schedule (ADOS) and the Mullen Scales of Early Learning. The paper explores the reasons why so few children with possible AS were identified early, including problems inherent in the assessment tools and the range of normal variation within characteristics required for a diagnosis. Only 10 children altogether had first words by 24 months, and abilities in the average range, and 9 were followed up. All of these able children had varied repetitive behaviours, and these increased in terms of ADI-R algorithm score over a 13 month interval. However, items concerning resistance to change and liking of routines tended to decrease in terms of reported impact on the child and family. Repetitive behaviours seem significant in the early referral of able children for a PDD diagnosis, but identification of children with AS is more likely to occur reliably once children are older and enter school.
Objective: Everyday decision making requires integration of a broad range of information from a variety of sources, including cognitive and emotional processes. For individuals with autism spectrum ...disorder (ASD), everyday decision making can be difficult. The mechanisms that underlie decision making in young people diagnosed with ASD have not been fully explored. Method: We studied children and young adolescents with autism spectrum disorder (ASD; n = 48) compared with an age- and ability-matched typical control group (CON; n = 54). We evaluated performance and psycho-physiological responsivity during the Iowa Gambling Task (IGT), an affective decision-making task. Results: ASD participants were superior to control participants on overall performance (p < .05), especially because of significantly better learning in later stages of the task. While both groups showed robust and equal psycho-physiological arousal to disadvantageous decks, the groups differed in their choice of card type, with the CON group choosing more often from the frequent-gain disadvantageous deck, despite occasional large losses; while the ASD group chose prominently from the advantageous decks. Conclusions: A decision-making style characterized by a drive to avoid potential loss rather than to seek possible reward may help decision making for ASD in some situations, but ultimately hinder functioning in relation to prosocial engagement and other complex situations where gain rather than punishment is the most effective motivating factor.
To investigate the frequency and pattern of a wide range of restricted and repetitive behaviors in the second year of life.
Parents of 139 15-month-old typically developing infants from a community ...sample completed the Repetitive Behavior Questionnaire-2, giving information on restricted and repetitive behaviors (e.g., stereotyped motor movements, sensory interests, routines and rituals, and preoccupations with restricted interests) seen in their children.
The Repetitive Behavior Questionnaire-2 was found to be a reliable measure of these behaviors at this age and revealed a high frequency of particular types of repetitive motor movements in 15 month olds.
These findings have implications for the early detection of disorders characterized by high levels of restricted and repetitive behaviors, such as autism spectrum disorder.
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