Your Act - Dy Ddeddf di 

Our campaign to ensure that autistic people, their families, carers and professionals play a full part in shaping an Autism Act for Wales.

Campaign update

Thank you to all those individuals and organisations who contributed to the consultation and to our Your Act campaign, which set out to ensure that Your Act works for you. Paul Davies AM will now consider the responses received and draft the Autism 'Wales' Bill, expected to be published for further consultation in the New Year. 

Follow the progress of the proposed Autism (Wales) Bill.

What is Your Act?

As a result of The National Autistic Society Cymru's Act Now campaign and the efforts of our branches and supporters, the National Assembly has voted to look further at whether a specific law is needed on support for autistic people, their families and carers in Wales.

This is a fantastic achievement for the campaign. The next step is for autistic people and family members to tell the Assembly what they want to see in law, so that they can get the services and support they need.

To encourage as many people to have their say, The National Autistic Society Cymru has launched our Your Act campaign.

Your Act builds on the work of our 2015 Act Now report on the state of services and support in Wales. This showed that things weren’t improving for people on the ground and nearly 90% of respondents to our survey said that autism legislation is needed to help make this happen. Alongside our members and supporters across Wales, we campaigned to ensure an Autism Act was on the political agenda. 

Your Act hopes to bring together all of the people in Wales for whom autism is a part of their daily lives so that your voices are heard and understood. 

Your diagnosis
Your future
Your family
Your job
Your life

Your diagnosis

For autistic people, getting an autism diagnosis is key. It can help them and their families and carers understand why they experience difficulties. It makes it easier to make sense of the world around them, and often allows people to access services and support. In our Act Now survey, 70% of those who responded said they felt relieved to get a diagnosis. 

The National Institute for Health and Clinical Excellence (NICE) has produced guidelines on diagnosing autism for both children and adults. The guidelines on ‘Recognition, referral and diagnosis of children and young people on the autism spectrum’ say that the diagnosis assessment should be done ‘within three months of a referral’. 

The Welsh Government is currently working towards a 26 week waiting time target for children’s diagnostic assessments, but there is no data available to date that measures progress against this target. 

An Autism Act could include putting a duty on every health board to make sure there is a clear pathway to diagnosis in every area for both children and adults. It could also be used to ensure that staff across health and care are better trained in autism. 

An Autism Act could have a timeframe within which someone who first raises concerns with a professional could expect a decision either way on whether a diagnosis is given and it could also ensure that Health Boards report on their waiting times so delays can be addressed. 

Your future

Children with autism grow up to be adults with autism. Yet, all too often autistic adults find it hard to access support. One of the reasons for this is that data isn’t routinely recorded and used to plan services for future need. 

Whilst there is often a support network within an education setting, similar support doesn’t always exist once a person leaves school or college. Our members and supporters tell us that they fear a cliff edge when they, or their child, come to the end of their education. We think it is vital that there is effective transition support and services are planned in advance to meet needs of young people, helping them to live independent and fulfilling lives.   

An Autism Act could ensure that appropriate data is routinely collected and used, alongside consultation with local autistic people and their families, to develop a plan on how they will meet the needs of the local autistic population. 

Legislation could ensure that all relevant agencies are engaged in transition planning for a child. What else do you think an Autism Act could include that would ensure young people don’t face a cliff edge as they transition into adult services?

The Welsh Government first published an autism strategy in 2008 and it was the first in the UK to do so. Since that time, the UK Parliament and Northern Ireland Assembly have passed legislation that requires the respective Governments to publish and regularly review their autism strategies. We think that Wales should do the same to ensure that its strategy has clear targets and effective monitoring. This would also make sure that autism remains on the agenda and not superseded by other Government priorities.  

Your family

Whilst campaigning across Wales for the introduction of an Autism Act, one thing became very clear to us, best summed up by a parent at our Swansea election hustings who said "I find it harder to fight the system than I do to deal with my son’s condition."

We know that these words are recognised by autistic people and their families across Wales who have to fight so hard for equitable access to education, health and social care or employment and welfare against a system that all too often doesn’t understand.

Carers are often left feeling isolated with little support and many are forced to give up work to care for a loved one. An Autism Act could include provisions that ensure specific support and interventions are offered to carers of autistic people, by making sure that a better understanding of their needs is built into local plans.

Autism legislation could ensure that there is a single point of contact for information and advice so that autistic people and their carers aren’t directed from service to service without getting the help and support they need. 

Your job

Professionals working with autistic people and their families often tell us that they would like more support to better understand the needs of those they are working with. 

Since the Welsh Government first published its autism strategy in 2008, there has been an increase of 76% in the number of pupils identified as having autism in schools in Wales. This means that the training education and health professionals receive needs to reflect the increasing demand for skills and expertise in autism. 

An Autism Act could ensure that professionals are given the support they need to develop their skills in working with autistic people and their families. It could also specify which professionals should have access to specialist training, for example, teachers, GPs or social workers.

Whilst we know that training resources are available for professionals, often they do not have time or sufficient resources to access them. An Autism Act could ensure that professionals are given the support they need to develop their skills, either during their initial training, or later through their continuing professional development.

Your life

Autism is a lifelong condition and therefore autistic children grow up to be autistic adults. Many people on the autism spectrum do not receive a diagnosis until adulthood. Because autism is a developmental condition, and not a learning difficulty or mental health issue, autistic people can often fall through the gaps when it comes to receiving the support they need. 

Access to services should be based on need and not a person’s IQ. With the right support at the right time, autistic adults can live fulfilling lives. Legislation could ensure autistic adults aren’t denied support because of their IQ and could empower autistic adults to get the support they need. 

An Autism Act could also include provisions to make sure that autistic adults play a key role in the development and review of services, locally and nationally. For example, it could demand that autistic representatives are included in stakeholder groups or evaluation panels. 

While the National Assembly for Wales does not have the power to change employment law, you may have ideas that could help improve the numbers of autistic people who are in full time employment.

It’s crucial that any autism legislation that is passed in Wales has the maximum possible input from autistic adults.