National Autism Project – Progress Report – May/June 2017

We are now entering the final 6 months of the project and the continuing political uncertainty in the UK has required us to be flexible with our plans for this period. Our report has stimulated huge interest and nearly all 1000 copies of the original printing have now been distributed in response to demand. Our website is consistently receiving nearly 5000 hits per month so we are confident that we are having an impact. Nevertheless, the general election, the period of government purdah and changed ministerial responsibilities on the one hand, and the obsession with Brexit on the other, have made it difficult to engage politicians and civil servants on the topic of autism.

Despite this, we have continued our dialogue with civil servants in relevant government departments. Using the report as a basis, we have written extensive and detailed briefs for the Department for Education, the Department of Health and the Department for Work and Pensions, highlighting the problems faced by autistic people that lie within their areas of responsibility. We looked closely into the specific policies and practices of these departments that were failing to meet the needs of autistic people and realised that across the board, they could be summarised as the failure to collect adequate data on autism, the failure to encourage evidence-supported practice, the need for better training and the lack of quality research, with the idea of creating an “autism identity” in the minds of officials as the overarching theme.

The first such meeting with DfE and Ofsted took place on June 21st and was followed by a separate meeting with the Local Government Association on educational themes. These meetings were good opportunities to air important issues such as EHCPs, exclusions, evidence-supported educational methods and reasonable adjustments in the school environment. Meetings with the DH (together with the Care Quality Commission) and the DWP (together with the Health and Work unit) will take place in July, and the briefing documents will then be posted on the NAP website along with any responses that the government bodies wish or feel able to provide.

The difficulties in engaging politicians and civil servants in England are mirrored in the other devolved nations. We are still discussing holding similar meetings with policy makers in Ireland, Scotland and Wales. Although the launch in NI was cancelled, interest in the report was strong from both NI and the Republic, and so we are considering holding an all-Ireland meeting.

We are not short of other activities in the coming months. To stimulate research, we have organised a Funders’ Forum on October 25th to which around 50 organisations have been invited. These include not only the traditional funders of autism research, but also trusts and foundations which may not previously have considered autism as a topic for funding.

Also taking place in October will be a “drop in” meeting in the House of Commons to which all new and returning MPs will be invited. We will be holding this meeting jointly with the main research charities. In preparation for this, a short brief outlining our major demands (The Autism Dividend) will be sent out in the next few weeks to all MPs along with the invitation.

To celebrate the achievements of the National Autism Project we plan to hold a farewell event in December in the House of Lords to which everyone who has been involved in the project will be invited. The purpose is not only to thank them for their help, but to seek commitment, especially from the major charities, to continue to campaign on the main themes of The Autism Dividend.

Finally, we have acted on a promise in the report that we would solicit written contributions on the theme “The Future I’d Like to See”, initially from within the NAP team, but later from others in the autism community. The first articles are now on the website and we hope that these will stimulate interest and response from the wider community.

Ian Ragan
July 2017

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