Evidencing the need for our activities: Published research and guideliness by World Health Organisation Peer-reviewed studies: The risks to psychological wellbeing for parents of children with autism spectrum disorders are welldocumented. Mothers of children with autism often have elevated levels of depression and report lower levels of wellbeing than mothers of children with other types of developmental disabilities. …Results indicate that mothers who are caregivers of school-age children with autism are at increased risk of impaired physical wellbeing. We also found that the impaired maternal health-related quality of life is related to the extent of symptoms of hyperactivity and conduct problems in the child. …Having a larger social network was associated with improvements in maternal wellbeing. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3595999/
Children with disabilities often display challenging behavior problems, which can lead to high levels of stress and low levels of wellbeing for parents. Notably, many individuals with autism spectrum disorder exhibit challenging behaviors not only during childhood, but also during adolescence and adulthood, resulting in caregiving stress for parents, which remains high across the life course. …mothers of adolescent and adult children with such disorders in the present study experienced very high levels of daily health symptoms. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3426638/ For mothers of children with autism, informal support appeared to be a more effective stress-buffer than formal support. The cumulative results of several studies illustrated that parents who received support related better emotionally to their children. Furthermore, levels of social support were the most powerful predictors of depression and anxiety in mothers. foa.sagepub.com/content/17/4/208.short Autism costs the US and UK economies 104bn and £32bn a year respectively, more than any other medical condition and greater than the cost of cancer, strokes and heart disease combined. www.theguardian.com/society/2014/jun/09/autism-costs-more-cancer-strokes-heart-disease
Families of children with autism face significant economic burden. Given the substantial health care expenses associated with autism, the economic impact of having lower income in addition to these expenses is substantial. It is essential to design universal health care and workplace policies that recognize the full impact of autism. www.ncbi.nlm.nih.gov/pmc/articles/PMC3356150/ Although not inherent in autism, many individuals with autism display aggression, which can have a significant impact on long-term individual and family outcomes, and profound effects on the daily lives of families and access to supports and services. …Participants reported social isolation, exhaustion, and safety concerns for themselves, other family members, and their children exhibiting aggression. http://foa.sagepub.com/content/early/2013/01/18/1088357612472932
Parents' desire and need for information related to autism is evident. Parents' identified supports and resources in need of expansion and development to assist with their child's needs. These findings support previous research with families communicating a need for partnership with healthcare providers. http://www.ncbi.nlm.nih.gov/pubmed/21047211
The ability of a mother to successfully advocate for her child and locate, access and retain services directly influences the child's access to services. … Mothers need to learn how to advocate and to receive professional advice about what their child needs. Recommendations for services and policy include the provision of education packages that provide the mother with specific information about the child's service needs; written information and advice about successful navigation of the disability service system/education system/medical system; and information about disability support groups or organizations that will provide additional information. Findings suggest that service changes that provide mothers with information about their own health and need for health enhancing activities, as well as education that empowers mothers to manage and master their child's disability and needs, may contribute to maternal mental health and well being. http://www.sciencedirect.com/science/article/pii/S0891422212001035
World Health Organisation recommendations and strategies to addressing inequalities in health care and unmet medical needs in autism: 1. making available health education materials in formats that are easily accessible to people with developmental disorders; 2. empowering people with developmental disorders and their families; 3. improving knowledge and change attitude of care providers
UK National Institute for Clinical Excellence Quality Standards for Autism, 2014, recommends that people with autism who develop behaviour that challenges be assessed for possible triggers, including physical health conditions … parents should be actively involved in the decision-making process about investigations, treatment and care of their children.
Treating Autism survey (2014) In a survey of 304 families with autism conducted by our charity earlier this year only 22% of respondents reported that “the person with autism had a thorough investigation of his/her symptoms from an NHS practitioner”. When asked what type of symptoms NHS professionals had dismissed as the result of autism, answers included frequent vomiting, severe constipation, hyperactivity, diarrhoea, screaming, self-injury, sleeping only a few hours a night, seizure-like behaviours, aggressive outbursts, failure to grow, contorting/posturing, excessive drinking of water, toe-walking, chewing/eating non-food items, tics and jerks. Only 10% of respondents were “very satisfied” with their experience of NHS GPs and paediatricians, while 51% and 46% respectively were “unsatisfied.
The Public Health Learning Disabilities Observatory: Health Inequalities & People with Learning Disabilities in the UK: 2010. This publication lists the problem of ‘diagnostic over- shadowing’ by health care professionals, where symptoms of physical ill health being mistakenly attributed to a behavioural problem as a contributing factor to health care inequalities. Evaluation, diagnosis, and treatment of gastrointestinal disorders in individuals with ASDs: a consensus report. Pediatrics. This paper stresses that “care providers should be aware that problem behavior in patients with autism may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders.” The prevalence of gastro-oesophageal reflux disease based on non-specific symptoms in institutionalized, intellectually disabled individuals. Eur J Gastroenterol Hepatol. Potentially painful gastrointestinal disroders are identified in two thirds of individuals specifically selected for symptoms that included behavioural difficulties such as self-harm, food refusal, fear and restlessness. Autism spectrum disorders and allergy: observation from a pediatric allergy/immunology clinic. Expert Review of Clinical Immunology, points out that care providers “should be aware of the potential impact of allergic diseases on behavioral symptoms and cognitive activity in ASD children.” Medical Comorbidities in Autism Spectrum Disorders: A Primer for Health Care Professionals and Policy Makers, 2014. This document presents current research showing that medical comorbidities are more common in autism, often not treated properly, and affect quality of life and can cause or increase challenging behaviours and symptoms in children and adults with autism issuu.com/treatingautism/docs/medical_comorbidities_in_autism_spectrum_disorders