scholarly journals A Subtle Profile With a Significant Impact: Language and Communication Difficulties for Autistic Females Without Intellectual Disability

2021 ◽  
Vol 12 ◽  
Author(s):  
Alexandra Sturrock ◽  
Catherine Adams ◽  
Jenny Freed
Keyword(s):  
Intellectual Disability ◽  
Well Being ◽  
Typically Developing ◽  
Behavioral Differences ◽  
Language Therapy ◽  
Communication Difficulties ◽  
Language And Communication ◽  
Therapy Services ◽  
Recognition Testing ◽  
The Impact

The presentation of autism in females is poorly understood, which is thought to contribute to missed or later- age diagnosis, especially for those without intellectual disability. Dedicated research into social and behavioral differences has indicated a specific female phenotype of autism. However, less has been done to explore language and communication profiles, despite known sex/gender differences in typically developing populations. This article provides a synthesis of recent work from this small but emerging field. It focuses on a series of four preliminary and explorative studies conducted by the authors and embeds this within the wider literature. Findings suggest a specific profile of language and communication strengths and weaknesses for autistic females without intellectual disability (compared to autistic males and typically developing females). Furthermore, despite the relatively subtle presentation of difficulties (compared to autistic males), the impact on functionality, social inter-relations and emotional well-being, appears to be equitable and significant. The discussion highlights the need for further empirical research and proposes areas for investigation. Implications for clinical practice include the need for better recognition, testing and provision of interventions dedicated to the language and communication difficulties for autistic females. This has relevance for diagnostic, mental health and speech and language therapy services.

scholarly journals In their own words: The impact of subtle language and communication difficulties as described by autistic girls and boys without intellectual disability

Autism ◽  
2021 ◽  
pp. 136236132110020
Author(s):  
Alexandra Sturrock ◽  
Helen Chilton ◽  
Katie Foy ◽  
Jenny Freed ◽  
Catherine Adams
Keyword(s):  
Intellectual Disability ◽  
Clinical Practice ◽  
Negative Emotions ◽  
Well Being ◽  
Autistic Children ◽  
Communication Difficulties ◽  
Language And Communication ◽  
Negative Feelings ◽  
The Impact ◽  
Insight Into

Subtle language and communication difficulties are persistent and pervasive for autistic individuals without intellectual disability. They are thought to impact negatively on functionality, social interrelations and emotional well-being, although this relationship is under-explored in the literature. The personal accounts of autistic children could add valuable insight into how they experience subtle language and communication difficulties and what impact this has on their daily lives. In this study, 12 autistic children (9–14 years), without intellectual disability, were interviewed on this topic, using specially developed methods/materials to facilitate rich self-reporting. Results showed the children could provide detailed insight into their difficulties and the impact of these on key aspects of functionality (education and daily living) and social interrelations (including friendship building). They also demonstrated a potentially bi-directional relationship between subtle language and communication difficulties and negative emotions; with negative emotions limiting communicative competence and subtle linguistic difficulties leading to negative emotional responses. This study indicates the need for further investigation into the subtle difficulties experienced by autistic children without intellectual disability and its likely impact. Implications for clinical practice include the need for better identification of subtle language and communication difficulties and provision of appropriate therapeutic services which may help to ameliorate negative functional, social and emotional sequelae. Lay abstract Subtle language and communication difficulties are experienced by many autistic individuals even when they do not have additional learning disabilities. These difficulties may affect a person’s day-to-day living, social relationships and emotional well-being. However, currently, there is not much research into this topic. To date, no one has asked autistic children about their own language and communication difficulties or how they feel it affects them. Asking the children could provide valuable new insights. In this study, 12 autistic children (9–14 years), without learning disability, were interviewed on this topic. We developed interview questions, resources and interview procedures with the support of the autistic community. We also worked with an autistic researcher to analyse our results. We aimed to get the most genuine report of the autistic child’s experiences. Our results showed that the children could give detailed insight into their language and communication difficulties if they were given the right support. They told us about how subtle language and communication difficulties affected their ability to learn, take part in certain activities and seek help. They talked about how subtle difficulties affect their ability to talk to new people, talk in groups and ultimately make friends. They also told us about the emotional upset that these subtle difficulties could have. They suggest that communication breakdown leads to negative feelings, but also that negative feelings can lead to more difficulties explaining themselves. The results of this study suggest that we should do more research on the effects of subtle language and communication difficulties. There are also implications for clinical practice. We should identify subtle language and communication difficulties through thorough assessment because these are often missed. We should also develop therapy and strategies that are aimed at individuals with subtle language and communication difficulties because this could help prevent additional difficulties with learning, help-seeking, friendship-making and emotional well-being.

scholarly journals The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland

2021 ◽  
Vol 4 ◽  
pp. 93
Author(s):  
Mary McCarron ◽  
Darren McCausland ◽  
Retha Luus ◽  
Andrew Allen ◽  
Fintan Sheerin ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
Repeated Measures ◽  
Well Being ◽  
Adverse Outcomes ◽  
Multiple Infection ◽  
Similar Proportion ◽  
Related Data ◽  
Increased Risk ◽  
The Impact ◽  
Health And Well Being

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home, most often to isolate (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants’ health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.

scholarly journals Police officers’ awareness of the speech, language and communication needs of young offenders

2020 ◽  
pp. 0032258X2096859
Author(s):  
AnneMarie MacRae ◽  
Ann Clark
Keyword(s):  
Police Officers ◽  
Young Offenders ◽  
Further Training ◽  
Language Therapy ◽  
Speech And Language Therapy ◽  
Support Strategy ◽  
Common Support ◽  
Language And Communication ◽  
Therapy Services ◽  
Communication Needs

Around 60% of young people in conflict with the law experience speech, language and communication needs (SLCN). This study investigates Police Scotland officers’ awareness of the SLCN of young offenders, strategies officers use to support SLCN and their interest in further training on SLCN. A majority had worked with young offenders with SLCN and were fairly confident in recognising these needs. The most common support strategy was to involve outside agencies, specifically Appropriate Adults. Increased speech and language therapy services are needed to train Police Officers to recognise and support SLCN without reliance on other agencies.

A comparison of physical activity, physical fitness levels, BMI and blood pressure of adults with intellectual disability, who do and do not take part in Special Olympics Ireland programmes: Results from the SOPHIE study

2017 ◽  
Vol 22 (2) ◽  
pp. 154-170 ◽  
Author(s):  
Denise Walsh ◽  
Sarahjane Belton ◽  
Sarah Meegan ◽  
Kirsty Bowers ◽  
Deidre Corby ◽  
...  
Keyword(s):  
Physical Activity ◽  
Blood Pressure ◽  
Intellectual Disability ◽  
Physical Fitness ◽  
Vigorous Physical Activity ◽  
Well Being ◽  
Self Report ◽  
Special Olympics ◽  
The Impact ◽  
Fitness Levels

People with an intellectual disability are less physically active, live more sedentary lives, have lower fitness levels and are more likely to be overweight or obese than the general population. No evidence exists on the impact of participation in Special Olympics Ireland (SOI) on physical activity and physical fitness levels. Adults with intellectual disabilities (16–64 years) were recruited from services and SOI clubs. Physical measures included waist circumference, height, weight, blood pressure, heart rate and 6-min walking test. Self-report questionnaires gathered data on physical activity levels. Actigraph (GT3X) accelerometers were used to gain an objective measure of physical activity. SOI participants accumulated more moderate to vigorous physical activity per day, had higher fitness levels and more positive health profile scores than those not taking part in SOI. SOI has the potential to make a positive difference to people’s physical health and subsequently their overall health and well-being.

scholarly journals Individualized Apartment Accommodation for People With Intellectual Disability: Protocol for a Qualitative Study Examining the Well-Being and Support Outcomes Linking Housing and Health (Preprint)

2020 ◽  
Author(s):  
Phillippa Carnemolla
Keyword(s):  
Intellectual Disability ◽  
Group Home ◽  
Community Setting ◽  
Well Being ◽  
Support Staff ◽  
High Density ◽  
Small Scale ◽  
Supported Accommodation ◽  
The Impact ◽  
Support Model

BACKGROUND Understanding the outcomes associated with both receiving and providing support to people with intellectual disability in specific settings can facilitate the alignment of health providers, community care providers, architects, and urban planners to strengthen levels of autonomy and community participation of people with intellectual disability living in the community. This study explores the impact of providing support (available 24 hours a day) for people with intellectual disability in a high-density apartment. It seeks the perspectives of people with intellectual disability who have moved into an apartment from a group home (where 4-6 people with disability live), their families, and support staff. It will enable comparison between two models of supported accommodation, group homes and individualized apartments, in a community setting. OBJECTIVE The aims of this study are to explore the impact of an individualized apartment model of supported accommodation in a high-density setting on the well-being, autonomy, and participation of people with intellectual disability living and receiving support; the experience of providing care or support; and how this setting impacts the logistics of how quality support is provided. METHODS Qualitative research methods were employed as the primary means of collecting and analyzing data. There are two main sources of data in this study: (1) semistructured interviews with participants in up to 3 waves (pre, post 1, and post 2) and (2) pre- and postoccupancy evaluation data on the design, layout, and location details of the built environments. Coded interview data will be paired with pre- and postoccupancy evaluations of the two accommodation settings. RESULTS As of May 2020, we have recruited 55 participants. There have been 96 interviews conducted in 2 waves with people who have moved into supported accommodation, families, and staff. Collected data are currently being analyzed. We expect the results of the trial to be published in a peer-reviewed journal in late 2020. CONCLUSIONS This paper sets out a study of an alternative housing and support model for people with intellectual disability. It will capture personal experiences of people with intellectual disability receiving support in an apartment compared to their experiences in a group home. It will also capture the experiences of support staff working in the new setting and reveal how this differs from a group home setting. The inclusion of pre (group home) and post (apartment integrated into a community setting) measures addresses evaluative and comparative questions around the nature and impacts of the small-scale apartment and support model for both those who live and receive support, and those who support them. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/18248

scholarly journals COVID-19 and young people with intellectual disability: a service review

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S334-S335
Author(s):  
Omer Minhas ◽  
Pippa Mundy ◽  
Jessica Stewart
Keyword(s):  
Intellectual Disability ◽  
Complex Systems ◽  
Clinical Review ◽  
Community Support ◽  
Well Being ◽  
Child And Adolescent ◽  
South Wales ◽  
Distress Calls ◽  
The Impact ◽  
Children With Intellectual Disability

AimsA service review of specialist child and adolescent intellectual disability provision in South Wales was conducted between March and May 2020. The purpose was to explore the impact of the first COVID-19 pandemic lockdown on children with intellectual disability and their families. The review aimed to explore if the disruption to the systems involved in their care would impact their wellbeing and behavioural presentations. We also measured if there had been an increase in the use of medication. Our focus was on the distress calls, which are requests for urgent clinical review to prevent a crisis.A service review of specialist child and adolescent intellectual disability provision in South Wales was conducted between March and May 2020. The purpose was to explore the impact of the first COVID-19 pandemic lockdown on children with intellectual disability and their families. The review aimed to explore if the disruption to the systems involved in their care would impact their wellbeing and behavioural presentations. We also measured if there had been an increase in the use of medication. Our focus was on the distress calls, which are requests for urgent clinical review to prevent a crisis.MethodSix clinical areas across three Welsh health boards under the same specialist team were surveyed. Case notes and email correspondence were reviewed to obtain the number and content of crisis calls made to specialist CAMHS across an eight week period during the first UK COVID-19 lockdown. Data were gathered on frequency, purpose, and outcome of calls. Comparison data were also collected for the period October 2019 to March 2020.ResultPre-COVID-19: Two crisis calls were identified in two different areas during the pre-COVID period surveyed. Increases in medication and increases in respite care packages were made as a result.During COVID-19 restrictions: 20 different initial distress calls made (children age 9 and 17 years old (M = 13.2); 75% were boys) across five of the six clinical areas. Of these 20 calls, 17 were active cases and 3 were new referrals. 95% of calls resulted in medication increases and there were few other interventions used due to COVID-19 constraints. Changes to the child's support system were discussed across all cases and return to school was highlighted as a key protective factor in improved well-being. Differences between clinical areas were also identified.ConclusionThere was a clear increase in distress calls and requests to prescribe or increase psychotropic medication to calm the distress during the ‘lockdown’. Changes in behavioural presentation may have occurred partly due to the disruption to the complex systems that typically support a child and the shift away from community support. Children with intellectual disability and their families are unique and embedded in complex systems comprising schools, respite, and healthcare provision which work together to deliver optimal mental healthcare with psychosocial interventions with medication for higher-risk situations. Any shifts in these systems may lead to an imbalance and a higher likelihood of medication use.

scholarly journals Evaluating Quality of Life in Families With Williams Syndrome Patients

2020 ◽  
Author(s):  
ESTHER MORALEDA ◽  
Mario Arana ◽  
Patricia López
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Williams Syndrome ◽  
Personal Development ◽  
Social Inclusion ◽  
Interpersonal Relations ◽  
Well Being ◽  
Self Determination ◽  
The Impact

Abstract Background: Williams Syndrome is a developmental disorder characterized by a variable intellectual disability. People with Williams Syndrome need the intervention of several clinical and educational specialists throughout their life. However, little is known about the impact produced by this disability in their immediate environment, especially in families. The purpose was to know the level of quality of life described by families with Williams Syndrome.Methods: The sample was made up of 33 families belong to Spanish Williams Syndrome Association who were evaluated using the Kidslife Scale. Theirs children and adolescents were between 4 and 20 years old. Eight main quality of life dimensions were evaluated: emotional well-being, physical well-being, material well-being, personal development, interpersonal relations, social inclusion, self-determination and rightsResults: The obtained data indicated that the degree and presence of intellectual disability themselves did not homogeneously influence people’s quality of life, but many variables could alter their quality of life to a greater or lesser extent. There are no significant differences between quality of life areas but significant differences appeared for level of dependence in the self-determination subarea (p<.05). Conclusions: These results led us to analyse the social and emotional implications for families and their environment.

The Impact of Child Characteristics on Mothers' Sleep Patterns

1996 ◽  
Vol 16 (1) ◽  
pp. 3-22 ◽  
Author(s):  
Terry K. Crowe ◽  
Lynne Clark ◽  
Clifford Quails
Keyword(s):  
Multiple Disabilities ◽  
Well Being ◽  
Typically Developing ◽  
Sleep Patterns ◽  
Typically Developing Children ◽  
Entire Family ◽  
Target Child ◽  
Children With Down Syndrome ◽  
The Impact ◽  
Target Children

The sleep patterns of 45 mothers of children with moderate to severe multiple disabilities, 45 mothers of children with Down syndrome, and 45 mothers of typically developing children were compared by means of a 7-day diary. The children ranged in age from 6 months to 5 years. The Caregiver's Activity and Recording of Events (CARE) Inventory was completed by each subject to record mothers' activities in half-hour segments throughout a 24-hour day. Activities were coded into nine categories including rest/sleep. The three groups of mothers were compared on total hours of rest/sleep per day, number of sleep interruptions, reason for sleep interruptions, influences of siblings of target children, and number of times the father attended to the target child during the night as perceived by the mother. Surprisingly, the results indicated that mothers of children with multiple disabilities reported more sleep than did mothers in the other two groups. There were no significant differences found among the groups in the following: amount of weekly daytime sleep; frequency and duration of child-related interruptions per week; number of nights of uninterrupted sleep per week; maximum number of sleep interruptions in one night; and mothers' perception of fathers' nighttime assistance. The data indicated that many mothers in all three groups experienced numerous weekly sleep interruptions, particularly mothers of infants 6 to 12 months of age. Professionals working with mothers of young children must consider the effects of shortened and interrupted sleep patterns on the day time functioning and health of mothers and the effect on the well-being of the entire family.

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