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Consultation background

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 Background
 Easy read summary

Background

The Department of Health will publish a strategy on autistic spectrum conditions (ASC) by the end of this year.

By consulting widely, we hope that our final proposals will be more credible and based on strong evidence. We want services that better meet the needs of adults with an ASC and which operate in a more co-ordinated way.

We believe that the needs of people with an ASC are central to any discussion. Engagement matters and we are working to ensure that the voices of people with an ASC and their families are heard.

Approach to the consultation

This consultation deliberately does not set out recommendations about what needs to change and how those changes can be achieved. It does, however, seek to focus the debate on the types of outcomes that we aim to identify in the development of the final strategy for publication later this year

Our aim is to consult openly and widely, deciding upon the recommendations and outcomes in the final strategy in co-production with adults with an ASC and all those involved in working with and supporting them.

One of the challenges for developing the final strategy is ensuring that we have the right evidence base to support the proposals and recommended outcomes. The existing estimates of the prevalence rate for ASC vary dependent upon how it is diagnosed and defined. Earlier studies estimated prevalence to be around 5–10 per 10,000 of the general population^[1] but more recent reports^[2] have estimated prevalence rates up to 116 per 10,000. The Department of Health recognises the need for a better understanding of prevalence and is commissioning work in this area.

In addition to understanding more about the number of people affected by ASC, it is also important for the development of the final strategy to understand more about what type of approaches have been effective in delivering change and how new ways of working and local system reform have improved outcomes for adults with an ASC.

As part of the consultation process the Department of Health wants to gather as much evidence as possible to inform its thinking. In responding to the consultation, we would encourage people to contribute examples and information about their local knowledge and experiences to help inform the debate.

As this consultation does not set out proposals or recommendations, it is not accompanied by an impact assessment of costs, risks and benefits; the final strategy to be published at the end of the year will be accompanied by an impact assessment considering those issues. To help inform the final strategy and our assessment of costs and benefits, we are asking stakeholders to use this consultation process to share with us examples of current service delivery that is working well and what the costs, benefits and risks have been of taking that approach in your local area.

Finally, it is important to recognise that this programme of work is set within an equality and human rights approach – that adults with an ASC have, and should be able to enjoy on an equal basis, the same rights as everyone else. The Department of Health also recognises the need to understand the impact of this work in relation to issues of equality and human rights.

To that end, as part of the consultation process, we would encourage people to consider, and comment on, the accompanying initial impact assessment on equality.

Adults with Autistic Spectrum Condition (ASC) Equality Impact Assessment - opens in a new window

We would welcome specific feedback on what the barriers might be to achieving equitable access to services and good quality outcomes for everyone with an ASC from the perspective of ethnicity, gender, disability, age, sexual orientation and religion or belief. Comments on the impact assessment on equality can be sent to [email protected].

Executive summary

The purpose of this consultation and the related consultation process is to seek views on what actions, in which areas, can deliver the greatest change for the largest number of adults with an ASC.

With input from an external reference group of people whose lives are affected by ASC, either professionally or personally, we have identified five key themes for this consultation. The themes were chosen as representative of the main concerns that we hear from adults with an ASC and, as such, are the areas that we believe can deliver the greatest change. These are social inclusion, health, choice and control, awareness raising and training, and access to training and employment. However, we recognise that the themes do not cover all the issues, and want to take this opportunity to find out if the themes and what we say about them are the right ones to be the top priority for action.

Both the external reference group and the government departments involved in developing the strategy had ideas about what actions could make change happen. Some of those ideas are reflected in this document, but we want to hear the ideas of as many people as possible to help decide and inform the right approach for the final strategy. To help us understand how services can be delivered in the best possible way, we are also interested in what you can tell us about what has worked or not worked with services that you are involved with. We also want to know about the costs, benefits and risks involved in delivering the services that you are involved with.

Footnotes

• 1 ^ Lotter V (1966). Epidemiology of autistic conditions in young children, I. Prevalence. Social Psychiatry 1: 124–137.
• 2 ^ Baird G et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). The Lancet 368 (9531): 210–215.