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Throughout the responses to all questions, respondents express frustration at the way people with an ASC are so little understood not only by the public at large, but often by the professionals who determine the care they receive and the quality of their lives in terms of housing, education and employment. A theme which emerges in response after response is a sense that there needs to be a concerted effort to raise awareness and understanding both of what it means to have an ASC, and what it means to be the carer of someone with an ASC.
There is a strong sense in responses that this increase in understanding needs to include more differentiation
between different types of ASC, in particular between high-functioning and low-functioning conditions; and that generalisations about people with an ASC need to be replaced by an appreciation of the abilities and needs of each individual with an ASC.
This leads to the call for services that are designed for each individual, which in turn means developing well-funded and resourced local services that can be provided by specialist teams using multidisciplinary approaches within a national framework. Many people call for advocacy and training, or support for self-advocacy, as an empowering way of ensuring personalised services.
There are particular problems expressed within the responses, such as the difficulty for adults to get an ASC diagnosis in the first place and thus enable them to access services and support. There is a suggestion that a national standard for such diagnoses is required, and that this standard should be recognised by bodies other than the National Health Service. There are also concerns that there need to be efforts to prevent adults with an ASC being labelled as having learning difficulties if their IQ is under 70, or having a mental health problem if it is over 70, or falling into the gap between the two – and being denied access to services as a result. Respondents argue that health professionals need to be aware of the other health problems, both physical and mental, to which an ASC can lead and that such problems can mask the underlying existence of an ASC.
Once a diagnosis of an ASC has been achieved, respondents would like to pave the way to lifelong care and support for those with the most serious conditions. They would also like to see an appreciation of the difficulties many experience with crowded and noisy environments such as doctors’ surgeries, hospital waiting rooms, and public transport. Those with sensory sensitivities may need living, learning and working environments that take careful account of these sensitivities if they are to avoid further problems and lead even approximately normal lives. A theme which is raised by a great many respondents across all the sections is the need for the provision of adequate and supported housing so that people with an ASC can live more independent lives.
Respondents talk in detail about the need for trained professionals in many walks of life to be available to help explain and guide people with an ASC. Respondents provide examples from experience of the difficulties they have engaging with many aspects of life such as seeking employment, housing and benefits. There are few examples in the consultation responses of positive experiences with these services and correspondingly many people also talk of how easy it is for ASC behaviour to be misinterpreted and for them to fall foul of the criminal justice system. There are many calls for people working within the judicial system to be trained to deal with people with an ASC better.
Another issue that recurs throughout the consultation is the need for improved transition planning: how the shifts from childhood through adolescence to adulthood are managed and the support that is required at different stages. It is emphasised time and again that different people have different needs. Some adults with an ASC can live independently, raising their own families, earning their own living, and contributing positively to society. Others, meanwhile, are dependent on parents and other carers throughout their lives.
It is clear from responses that someone’s place on the autistic spectrum largely determines what they can and cannot do, and what support they need at different points in their lives. People at the high-functioning end of the spectrum, for example, may achieve academic excellence but struggle with everyday tasks; others may hold responsible jobs but find basic social communication extremely difficult and become progressively more isolated. Those with fewer abilities may still find satisfying jobs and build an active life in their communities. But all too often the absence of information, of choice, of support from sympathetic employers and colleagues, or indifference and abuse from the gatekeepers of the services that are available, can prevent people with an ASC living even minimally happy lives, let alone realising their full potential.
For these reasons the work of carers, whether professional or voluntary, is recognised by respondents to be of critical importance. It is often noted that carers too need care, support and respite. There are also a great many concerns expressed, in the case of parents and relatives, about the future as they age and worry about those they will leave behind.
This leads to the call for services that are designed for each individual, which in turn means developing well-funded and resourced local services that can be provided by specialist teams using multidisciplinary approaches within a national framework. Many people call for advocacy and training, or support for self-advocacy, as an empowering way of ensuring personalised services.
There are particular problems expressed within the responses, such as the difficulty for adults to get an ASC diagnosis in the first place and thus enable them to access services and support. There is a suggestion that a national standard for such diagnoses is required, and that this standard should be recognised by bodies other than the National Health Service. There are also concerns that there need to be efforts to prevent adults with an ASC being labelled as having learning difficulties if their IQ is under 70, or having a mental health problem if it is over 70, or falling into the gap between the two – and being denied access to services as a result. Respondents argue that health professionals need to be aware of the other health problems, both physical and mental, to which an ASC can lead and that such problems can mask the underlying existence of an ASC.
Once a diagnosis of an ASC has been achieved, respondents would like to pave the way to lifelong care and support for those with the most serious conditions. They would also like to see an appreciation of the difficulties many experience with crowded and noisy environments such as doctors’ surgeries, hospital waiting rooms, and public transport. Those with sensory sensitivities may need living, learning and working environments that take careful account of these sensitivities if they are to avoid further problems and lead even approximately normal lives. A theme which is raised by a great many respondents across all the sections is the need for the provision of adequate and supported housing so that people with an ASC can live more independent lives.
Respondents talk in detail about the need for trained professionals in many walks of life to be available to help explain and guide people with an ASC. Respondents provide examples from experience of the difficulties they have engaging with many aspects of life such as seeking employment, housing and benefits. There are few examples in the consultation responses of positive experiences with these services and correspondingly many people also talk of how easy it is for ASC behaviour to be misinterpreted and for them to fall foul of the criminal justice system. There are many calls for people working within the judicial system to be trained to deal with people with an ASC better.
Another issue that recurs throughout the consultation is the need for improved transition planning: how the shifts from childhood through adolescence to adulthood are managed and the support that is required at different stages. It is emphasised time and again that different people have different needs. Some adults with an ASC can live independently, raising their own families, earning their own living, and contributing positively to society. Others, meanwhile, are dependent on parents and other carers throughout their lives.
It is clear from responses that someone’s place on the autistic spectrum largely determines what they can and cannot do, and what support they need at different points in their lives. People at the high-functioning end of the spectrum, for example, may achieve academic excellence but struggle with everyday tasks; others may hold responsible jobs but find basic social communication extremely difficult and become progressively more isolated. Those with fewer abilities may still find satisfying jobs and build an active life in their communities. But all too often the absence of information, of choice, of support from sympathetic employers and colleagues, or indifference and abuse from the gatekeepers of the services that are available, can prevent people with an ASC living even minimally happy lives, let alone realising their full potential.
For these reasons the work of carers, whether professional or voluntary, is recognised by respondents to be of critical importance. It is often noted that carers too need care, support and respite. There are also a great many concerns expressed, in the case of parents and relatives, about the future as they age and worry about those they will leave behind.