Time for an Autism Act in Wales?

21 January 2015

Article by Amy Clifton, National Assembly for Wales Research Service

Image from flickr by darrenjsylvester. Licensed under the Creative Commons.

Image from flickr by darrenjsylvester. Licensed under the Creative Commons.

Autism is a developmental condition which affects a person’s ability to communicate and interact with other people. It is a spectrum condition, and therefore affects people in different ways; a person with autism may also have other related characteristics, such as sensory sensitivity or a learning disability.

According to the National Autistic Society (NAS) Cymru, around 30,000 people in Wales have autism.

The Welsh Government launched the Autistic Spectrum Disorder (ASD) Strategic Action Plan in April 2008. This action plan was the first of its kind in the UK; introducing specific guidelines on autism for local agencies, including local authorities and local health boards. The Welsh Government provided a ring-fenced fund for each local authority to develop support focused on autism.

Key actions set out in the action plan include:

  • appointing an autism lead in each local authority;
  • establishing a local stakeholder group that should include parents, carers and people with autism in each council area; and
  • developing local autism action plans.

There seems to be consensus that some progress has been made as a result of the action plan, particularly as it established local infrastructure in each Local Authority, and provided dedicated funds to support implementation.

However there is also general agreement that more still needs to be done to support for people with autism and their families.

NAS Cymru states that while the strategic action plan was a good start, implementation has been patchy across local authorities. It says over six years on, some children and adults with autism still struggle to get a diagnosis, and support is inconsistent across Wales. It notes that while diagnosis for adults has improved, there is a significant lack of post diagnosis support.

Research by NAS Cymru which surveyed people with autism and their families in Wales found that:

  • 58% still of people with autism in Wales said the diagnostic process took too long;
  • Only 21% were satisfied with the support that they received following diagnosis; and
  • Only 34% of parents felt they had enough support when choosing their child’s correct educational placement.

The Welsh Government states that since 2008, the action plan has provided over £12 million for the provision of autism services in Wales. It is currently working with the ASD Stakeholder Advisory Group to refresh the action plan and identify future priorities for action. The First Minister stated ‘that work will come to a head in the new year’.

From April 2015, the Welsh Government will remove the ring-fence on the funds to implement the action plan, and transfer funds to local authorities’ general budget via the Revenue Support Grant, which has raised concern amongst stakeholders (discussed in Plenary in December 2014).

NAS Cymru is campaigning for a new Autism Act in Wales, with duties to ensure that every council in Wales is taking appropriate action on autism. It believes Welsh legislation is needed to:

  • ensure children and adults with autism in Wales can get a timely diagnosis;
  • improve understanding of autism among key professionals; and
  • introduce new duties requiring all local authorities and health boards to take appropriate action to ensure children and adults with autism get the support they need.

So far over 2,800 people have signed the NAS Cymru petition calling for an Autism Act in Wales, and an individual Member’s debate is taking place in Plenary today on this topic, tabled by Mark Isherwood AM, Chair of the Cross Party Group on Autism.

Dedicated legislation on autism already exists in England; the Autism Act 2009, and in Northern Ireland; the Autism Act (Northern Ireland) 2011.

The call for an Autism Act has been put to the Welsh Government on several occasions in Plenary recently. In December 2014 the Minister for Health and Social Services said that he is taking advice from the ASD Stakeholder Advisory Group about the next steps required on autism, and stated:

The idea of an autism Act is part of what is discussed. I am open-minded about it. I will see the advice that I get. If it is true that there are things that we could do to strengthen the legislative basis of these services, then I am very willing to look at that.

The First Minister also confirmed that legislation is something that the Welsh Government will ‘consider actively’. However he stated that such a Bill would not come forward now until after 2016, given the length of time left in this Assembly.