Autism

Background: In Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists.

Informal caregivers are the unpaid persons who take care of a not self-sufficient family member, due to old age or chronic illness or disability. As in all the European countries, the demand for informal cares is further increased as a result of the ageing societies and the social and political fallout of informal caregiving is a very current and important issue. We have overviewed some international scientific literature, with the aim of understanding the key research objectives to be firstly pursued to address this problem.

Families play a crucial role in determining the mental health of the autistic individual(s) they are caring for. However, the stigma associated with autism can impair caregiver health. To investigate this, empirical evidence pertaining to stigma's impact on informal caregivers' mental health was systematically reviewed. All twelve included studies (n = 1442 informal caregivers) consistently reported the impact of autism related stigma upon caregiver mental health to be significant, meaningful and complex.

Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability.

This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers (n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers.

Family members are often the primary caregiver for autistic adults and this responsibility may impact on the carer's wellbeing and quality of life. 109 family members of autistic adults completed an online survey assessing their wellbeing relating to their caring role for their autistic relative. Family members who were supporting an autistic relative with co-occurring mental health difficulties and who they reported as unprepared for the future, self-reported higher levels of worry, depression, anxiety and stress, and poorer quality of life.

This online guide looks at how social care services can improve access to adults with autism. It is based on research that explores the barriers to services experienced by people with autism. It covers people with autism, whether or not they also have a learning disability. The main sections of the guide cover: awareness raising; acceptability and accessibility; joint working; transitions; early intervention and prevention; personalising services; and carers. The guide suggests ways services can improve, identifying how best to meet the goals of the government's autism strategy.

Clinical guideline which provides best practice advice on the care of adults with autism. The guidance covers the following key areas: general principles of care; identification and assessment; and interventions for autism, challenging behaviour, coexisting mental disorders. Assessment and interventions for families, partners and carers and organisation and delivery of care are also covered.

Autism is a neurodevelopmental disorder that affects at least 1% of the population. There is an urgent need to improve healthcare of people with autism. Research shows that autistic people die on average 16 years earlier than the general population and this increases if they also have learning disabilities. This Autism Toolkit aims to be a 'one stop shop', a user-friendly guide to autism for primary care professionals, people affected by autism, clinical commissioning groups, as well as interested members of the general public.

This film focuses on the work of Nicola James, a social worker for Surrey County Council. Nicola works with disabled young adults and their carers. She introduces us to Caroline Hunter, who cares for her son, who is autistic and has severe learning disabilities. Nicola’s work with the Hunter family demonstrates how considering the needs of both the service user and the carer can have a positive impact on the whole family.