House of Lords: New Autism Strategy Must Deliver Change For Autistic People

This is the key conclusion reached by the House of Lords special inquiry committee on the Autism Act 2009 in its report published today: Time to deliver: The Autism Act 2009 and the new autism strategy

The report ‘Time to deliver: The Autism Act 2009 and the new autism strategy’ finds that the Autism Act was a critical step forward in the recognition of autistic people, but successive Governments have failed to deliver real change.

The Autism Act says the Government must produce an autism strategy, backed up by statutory guidance for the NHS and local authorities. But sixteen years on, autistic people still face unacceptable inequalities. This holds them back from living fulfilling lives and society from an inclusive future. Statistics show that currently:

• More than 200,000 people are waiting for an autism assessment.
• Thousands of autistic children and young people are unhappy at school or out of school altogether. 
• Only about 3 in 10 autistic people are in work, compared to 5 in 10 disabled people and 8 in 10 non-disabled people. 
• On average, autistic people live shorter lives. 

The Government autism strategy for 2021 to 2026 set ambitions reflecting the key priorities of autistic people and those who support them. But, after the first year, there was no plan to deliver or fund the strategy.

The Government must now develop and deliver the new autism strategy, so it is ready to launch when the current one expires in July 2026. The Government must identify priority outcomes, produce a costed, deliverable plan to achieve them, and make clear who is responsible and accountable for delivery. 

Too often, decisions about autistic people’s lives are made for them, not by them. This must change. Autistic people and those who support them must be meaningfully involved in every stage of the development and delivery of the new strategy. 

As part of the new strategy, the Government must:

Launch a new initiative to improve understanding and acceptance of autism and expand mandatory training on autism for public-facing staff, produced with autistic people and those who support them. 

Invest in driving down autism assessment waiting times, while also developing and scaling up effective models for identification, assessment and lifelong, stepped support. 

Give services backing and incentives to provide low-level, integrated support to autistic people, to prevent care needs from developing and escalating into crisis.

Set a clear timeline and roadmap for strong community services to be put in place, so that provisions in the Mental Health Bill to end the unnecessary detention of autistic people and people with a learning disability can be commenced.

Enable local authorities and NHS bodies to provide services for young autistic people during the crucial transition to adulthood, bringing together support with education, employment, housing and mental health.

Build up capability for educating autistic children and young people across all types of educational provision, supporting high-performing specialist schools to act as centres of excellence.

Provide employers with better support and incentives to enable more autistic people to find, stay and thrive in work.

Develop, test and roll out effective ways to identify and support autistic people involved in the criminal justice system as victims, witnesses or offenders.

Baroness Rock, Chair of the Autism Act 2009 Committee, said:

“We are indebted to the hundreds of people who shared their experiences with us, including nearly 400 written submissions, which we believe to be a record number for a House of Lords Select Committee. We were constantly struck by the moving, and at times painful, testimonies of autistic people and those who support them, but also by the passion and determination they showed.

“Our report draws on their evidence to set out a path to addressing the needs and aspirations of autistic people through the new autism strategy. To make the new strategy a success, the Government must set realistic goals, make a plan to deliver them, monitor progress, and work together with autistic people and those who support them to build change. 

“The Government must now use our findings to fulfil its commitment to bring forward the new autism strategy on time in July 2026. We will judge the Government’s response against that commitment. Autistic people deserve nothing less.”

Sixteen years of the Autism Act

In 2009, awareness of autism was low. When autistic people sought help, they often fell through the gaps between mental health and learning disability services. Autistic people were often invisible.

The Act, successive autism strategies and statutory guidance have helped change that. They have made national and local government recognise and respond to the needs of autistic people. They have also expanded access to autism assessment. However, they have not succeeded in breaking down the barriers that autistic people face.

When the Act was passed, about 1% of people were estimated to be autistic. Diagnosis rates are now much higher than this in younger people, but still much lower in older people. This change has been driven by evolution in the medical and social understanding of autism. But there are also signs that autistic people are struggling to cope and are seeking a diagnosis to access even basic help. Services for autistic people are unable to cope with the numbers seeking assessment and support.

Outcomes have not improved. A new approach is now urgently needed.

The new Autism strategy

The Government autism strategy for 2021–26 set ambitions reflecting key priorities of autistic people and those who support them. However, after the first year, successive governments produced no plan to deliver or fund the strategy.

The Government must now take a different approach and launch a new strategy, identifying priority outcomes, producing a costed, deliverable plan to achieve them, and making clear who is responsible and accountable for delivery. Autistic people must be involved at every stage of the development and delivery of the new strategy.

Autistic people often face cliff edges in access to support: it is at the times of transition in life when support is most needed that it is most likely to fall away. The new strategy must take a lifespan approach, enabling every autistic person to access the right kind and level of support when they need it.

Too many autistic people access no support until they reach a crisis point. This costs money and lives. To end the reactive, crisis-led approach, the Government must give public services incentives to invest in timely, preventative support. Support must be based on good practice and strong evidence. The Government should develop co-designed interventions to improve autistic people’s lives and support trailblazing services to help build capability across mainstream services.

The new strategy must be reinforced by updated statutory guidance, making clear what the NHS and local authorities must do to implement the strategy. The Government must make clear how services will be delivered, how they will be held accountable, and what the consequences will be when they fail to meet autistic people’s needs.

Public understanding, acceptance and accessibility of Autism

Awareness of autism has rapidly grown since 2009, but public understanding and acceptance have not kept pace. Most autistic people still do not feel accepted or understood. Public spaces and facilities are too often inaccessible. This drives loneliness and mental ill health and stops many autistic people from fully participating in society.

Public discourse about autism is often unhelpful and, at worst, based on alarming misconceptions. This has a damaging impact on autistic people and those who support them.

The Government must now step up and show its support for autistic people, running a public understanding campaign in partnership with autistic people and those who support them. The Government must monitor this campaign and evaluate its impact.

To make public spaces accessible to autistic people, the Government must commission and evaluate mandatory, co-produced training for public-facing staff and make clear how they should meet their duties towards autistic people under equality law.

Identification, assessment and support

Autism diagnosis can change lives, enabling autistic people and those around them to understand and respond to their needs. However, the autism assessment system can also become a bottleneck, giving overstretched services a means to ration access to support.

Successive governments have focused limited resources on increasing capacity to carry out autism assessments, rather than providing support before and after diagnosis. The autism assessment system is now under severe pressure. Thousands wait years for a diagnosis and receive little to no support even when it comes.

The Government wants to see more autistic people receive needs-led support without a diagnosis. However, many fear that this will become an excuse to withhold diagnosis and make it harder to access any support at all.

The Government urgently needs to invest in autism assessment. But this will not be enough on its own. A radical shift is needed. Working in close partnership with autistic people and those who support them, the Government must identify how to move towards a stepped, lifelong model of support.

Reducing health inequalities and building support in the community

Autistic people face unacceptable inequalities in health outcomes and life expectancy. The Government has acted to make healthcare services more accessible for autistic people, by rolling out the Oliver McGowan Mandatory Training and trialling health checks for autistic adults. To build on this progress, the Government must test and roll out evidence-based ways of meeting autistic people’s healthcare needs and develop capability across the health and care workforce.

Autistic people still often fall into gaps between mental health and social care services. Many are turned away from mental health services just because they are autistic. Services must be given backing and incentives to provide low-level, integrated support to prevent care needs from developing and from escalating into a crisis. This support often costs little, but makes a big difference.

Too many autistic people are still being detained in mental health hospitals for no good reason. To put a stop to this at last, the Government must set out a roadmap for the development of strong community services. Autistic people also die early far too often. The Learning from Lives and Deaths Review process must be made mandatory and an independent process set up to make sure recommendations are implemented.

Access to Education and Transitions to Adulthood

Autistic children and young people do not have equal access to education. Thousands are unhappy at school or out of school altogether, with many families turning to home education in desperation. The Government must build up capability for educating autistic children and young people across all types of educational provision, supporting high-performing specialist schools to act as centres of excellence.

Young autistic people typically face a gulf in access to support when they become adults. Just when they should be spreading their wings, vital support falls away. Services must be developed to help young autistic people through this crucial transition, bringing together education, employment, housing and mental health support.

Autism and Employment

Most autistic people are not in work, but many would like to be. Supporting more autistic people to find and stay in work is not only critical to enabling those who wish to work to fulfil their aspirations, but would also help unlock economic benefits for the country as a whole.

Supported internships and supported employment programmes have a track record of helping autistic people move into work. Expanding access to such schemes is crucial. Employers also need better support and incentives to enable more autistic people to find, stay and thrive in work. The Government should promote voluntary accreditation schemes like Autistica’s Neurodiversity Employers Index and strengthen the Disability Confident scheme so it rewards employers that really do offer good support.

Autism and Criminal Justice

Autistic people are at higher risk of falling through the cracks in systems of support. This can put them at risk of becoming involved in the criminal justice system, as victims, witnesses, or offenders.

The evidence on autistic people in the criminal justice system, while limited, is concerning. Autistic people face barriers to having their needs understood and met when they come into contact with the police, in courts, in prisons and on probation. This may increase their risk of not being diverted out of the system.

There are numerous initiatives to improve support for autistic people in the criminal and youth justice systems, but they are piecemeal. The Government must now develop, test and roll out effective forms of support across the whole system.

The Committee’s Conclusion

The Government must now use our recommendations as a basis to develop the new autism strategy to take effect in July 2026. At the heart of the strategy must be ambitions to involve autistic people in all decisions that affect them, to enable every autistic person to receive the right support at the right time.