Get PDF Health Care and the Autism Spectrum: A Guide for Health Professionals, Parents and Carers

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It can be a hidden disability as it is not always easily recognised. This is a summary from the National Autistic Society about the features of Asperger syndrome. Getting a diagnosis How do I get a diagnosis for my child? If you think your child may have autism, discuss this with your GP or health visitor. You can also contact the National Autistic Society for advice. Here is a guide on what to do.

Talking to patients on the autism spectrum

How do I get a diagnosis as an adult? Referral and diagnostic pathways differ depending on where you live. Your first port of call is likely to be your GP.


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Below is a guide on what to do if you think you may have autism and want to be tested. Other useful information for people on the autistic spectrum Autism and Mental Health articles about co-existent anxiety, depression and OCD, all of which are more prevalent in people with autism. People with autism speak about their condition: These sites feature articles and videos from people on the autism spectrum and their carers.

A Guide describing - Resilience in families with autism spectrum disorder - how to build stronger family outcomes. Autistica recently launched Discover, the first national network for autism research. Discover will encourage research to focus on what matters most to autistic people and their relatives. They are currently looking to get as many autistic people and family members signed up to the network as possible.

By joining for free online you can keep up-to-date about recent discoveries, find out about opportunities to participate in research and feedback on their priorities for research. National reports and legislation for practitioners Key legislation and guidance for primary healthcare professionals. It focuses on the key areas for improving the quality of existing services. Autism and General Practice: Why is diagnosis so important?

Their goal is the improvement of quality of life and outlook for the individuals affected and those around them. Discover will drive a step-change in autism research by linking autistic people with top universities carrying out autism research, parents and carers, charities, NHS Trusts, hospitals and care providers. By joining for free online you can keep up-to-date about recent discoveries relevant to your clinical practice, and find out about upcoming events and other opportunities to get involved. Background and information for commissioners The RCGP has identified autism as a clinical priority and between and it will be facilitating projects aimed at improving autism awareness and management in primary care.

The following articles were included: The benefits of a diagnosis, by Dr James Cusack, Research Director of Autistica Why are people on the spectrum dying young? Eye Contact Sorry, but the bridge of your nose is peeling like Old wallpaper, and the falling flakes Are rather disconcerting. Then the seeds of doubt In my devotion, and your thoughts of me As some strange oddity would be confirmed. The item has been added to your basket. This item is out of stock.

The core autism behaviours are typically present in early childhood, although some features may not manifest until a change of situation, for example, the start of nursery or school or, less commonly, the transition to secondary school. Regression or stasis of language and social behaviour is reported for at least a third of children with autism.

The way in which autism is expressed will differ across different ages and therefore for any individual may change over time as they mature, in response to environmental demands, in response to interventions, and in the context of coexisting conditions. There are many claims of a 'cure' for autism, all of which are without foundation. However, there are interventions that can help some of the core features of autism, some of the symptoms, behaviours and problems commonly associated with autism, and support families and carers.

There is also evidence for treatment strategies to reduce behaviour that challenges. This guideline will summarise the different ways that health and social care professionals can provide support, treatment and help for children and young people with autism, and their families and carers, from the early years through to their transition into young adult life.

Newly diagnosed: things to help

This guideline covers children and young people with autism across the full range of intellectual ability from birth until their 19th birthday, and their parents and carers. It should be used alongside Autism: recognition, referral and diagnosis of children and young people on the autism spectrum NICE clinical guideline and Autism: recognition, referral, diagnosis and management of adults on the autism spectrum NICE clinical guideline Intellectual disability, severe language impairments and stereotypes are absent and although features of the broader autism phenotype are evident in early childhood, any impairment may become more manifest over time.

Autism can have a significant impact upon both the child or young person and their family members. While it is important to recognise that some people with autism will have highly productive and fruitful lives, for others with more severe autism, particularly with associated coexisting conditions, autism is a lifelong, significantly impairing disorder which can have profound effects not only on the individual but also on family members who may require assistance from healthcare, education and social care services for a long time.

Children and young people moving into adulthood may experience a social stigma towards their condition and this may have a significant effect on their employment prospects. Recognition and diagnosis of autism is important for children and young people as it leads to the provision of autism-specific support to families and appropriate education, which can in turn lead to more positive outcomes for the individual.

Smith et al found that mothers of adolescents and adults with autism experience high levels of distress. An appropriate and timely diagnosis contributes significantly to this process. Levels of understanding of autism among healthcare and other relevant professionals and the availability of services differ greatly from one local area to another and there are reported inequalities of diagnosis in subgroups, such as those with intellectual disability. The importance of conveying diagnosis sensitively to families cannot be overstated. Diagnosis can provide parents or carers with a framework for understanding their child and help them to make decisions about which interventions or management strategies to try.

However, it is important to acknowledge that, for many families, a diagnosis of autism can be deeply distressing and can take time to accommodate. Particular examples of how a diagnosis can enable the child or young person and their family or carers are shown below. These include:. The quotations from the National Autism Plan for Children, 20 and the National Autistic Society obtained during the development of this guideline highlight the parental viewpoint.

Once autism is diagnosed, parents can more easily access local and national support groups and services, where these are available:. Getting that label is the first step to getting some help and you want to know what it is you are dealing with — you just want to know. At least the experience can be assisted by a system that works effectively to answer their questions and provide them with the support they need. Everyone was reluctant to double-diagnosis and give him another label. The health service has a crucial role in recognition and diagnosis of autism.

Districts have different referral policies, although, in general, young children will be referred to paediatricians at a child development centre or directly to speech and language therapy services, and older children to paediatricians or child and adolescent mental health services CAMHS. Parents, through the National Autistic Society, say that they want clear referral pathways and health professionals who are well trained and knowledgeable about autism. They also want health professionals to work together and with education and social care services to enable the child or young person to gain access to appropriate intervention and education and the family to gain access to support.

In this section

The parental experience is one of disbelief of their concerns, difficulty in getting a referral and, often, a struggle to get a diagnosis. Their experience is that they have to repeat their story many times to different professionals and that assessments are not coordinated. However, the estimated prevalence rates of autism have major resource implications and place a considerable strain on local diagnostic services.

In , the Autism Bill was passed. The resulting Autism Act puts a duty on the Secretary of State to develop a strategy for adults with autism, regardless of their level of intellectual ability or disability.

Autism- Visiting health care professionals

These include: specialist training for key professionals; autism awareness training for all staff working in health and social care; a clear diagnostic pathway; lead professionals for diagnosis and assessment; transition plans; a named joint senior commissioner; and local commissioning plans. Statutory guidance was published in December There is a stated desire on the part of health professionals involved with children and young people for clear, evidence-based guidance on the diagnostic process for autism and guidance on which coexisting conditions should be assessed and which medical investigations should and should not be carried out routinely.

Services for children and young people have been critically reviewed by the Kennedy report Getting it right for children and young people, This is a particularly important aspect of health care for those with autism of all ages and abilities. In a district with a birth rate of per year, this equates to three referrals per week requiring diagnostic assessment and profiling of potential autism by the multidisciplinary team.

Treatment and care should take into account the needs and preferences of children, young people and those who care for them. In Wales, healthcare professionals should follow advice on consent from the Welsh Assembly Government available from www. Good communication between healthcare professionals and children and young people is essential.

It should be supported by written information, ideally evidence based, and tailored to the needs of the child or young person. Information, support, treatment and care should be: available according to need; culturally appropriate; accessible to people with additional needs, such as physical, sensory or intellectual disabilities; and accessible to people who do not speak or read English. Families and carers should also be given the information and support they need. There is a statutory transition planning process for children with statements of special educational need, beginning in Year 9 of schooling, and a government programme, the Transition Support Programme, which aims to improve the transition process for disabled young people and those with special educational needs SEN.

Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people in transition with autism. This clinical guideline concerns the recognition, referral and diagnosis of children and young people on the autism spectrum from birth to 18 years up to their 19th birthday. Further information about the areas that are covered by the guideline is available in the scope of the guideline reproduced in Appendix A.

This guideline is intended to complement other existing and proposed works of relevance, including the following guidance published by NICE. The GDG membership included:. NCC-WCH staff provided methodological support for the guideline development process, undertook systematic searches, retrieved and appraised the evidence, developed health economic models and wrote successive drafts of the guideline. Three external advisors were appointed to the GDG to advise on methodology, medical investigations and genetic testing.

None of the interests declared by GDG members constituted a material conflict of interest that would influence recommendations developed by the GDG. Organisations with interests in the recognition, referral and diagnosis of autism in children and young people were encouraged to register as stakeholders for the guideline.

Registered stakeholders were consulted throughout the guideline development process. The types of organisations eligible to register as stakeholders included:. The general approach is outlined below. View in own window. Further information is available from: www. These formed the starting point for the subsequent evidence reviews. Published evidence was identified by systematic searches of the databases shown below for the evidence. A search strategy designed to cover all the autism spectrum disorders was developed in the Medline database before being translated for use in the remaining databases, including Embase, the Cochrane Library Database, PsycInfo and Cinahl.

Studies of children or young people who did not meet the criteria for autism spectrum disorders were excluded from the guideline. Search strategies combined a combination of MESH headings and keyword searches including abbreviations. Searches were restricted to human studies and English language only; publications in languages other than English were not appraised.

Methodological filters were not applied. The strategy was to undertake a broad search to identify all the evidence relating to autism spectrum disorders, rather than individual searches for every clinical question. The results were then sifted into individual questions as outlined below. There was no systematic attempt to search grey literature conferences, abstracts, theses and unpublished trials.

Hand searching of journals not indexed on the database was not undertaken. Reference lists of included studies or reviews for additional references were not checked. Full details of the systematic searches, including the sources searched and the search strategies, are presented in Appendix F.

Appointments

Although the condition-based search strategy generated a very large set of records, the information scientists considered this was the best method of developing a comprehensive and sensitive strategy in this subject area. In total there were 47, references. Each of these databases were then de-duplicated and weeding was performed to remove references unlikely to contain research data, including book reviews, book chapters and letters.

Records not related to the subject area were also screened out at this stage, leaving a total database of 20, citations. Two researchers then conducted a more stringent weeding excluding citations that were not relevant to this guideline citations dealing with vaccinations, treatments or management of autism spectrum disorders resulting in in the database. These citations were screened and allocated to one of the ten clinical questions and the researchers dealing with each question ordered citations for inclusion or exclusion.


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  • This resulted in citations being considered and being ordered for the ten clinical questions. The electronic searches were re-run in June and in Oct and another 5, references for weeding were identified. After following the stages outlined above, a total of 48 extra papers were ordered.

    Health and Social Care

    The final cut-off date for searches was 11 October A total of articles were examined in full text and of these papers are included in the guideline. Evidence profiles were used to summarise the quality of the evidence and the outcome data for each important clinical outcome. The initial quality of evidence was rated according to study design 28 ; 29 see table 2.