Time to deliver change for autistic people
4 min read
The Autism Act 2009 is a landmark law for and about autistic people, that started life as a Private Member’s Bill sponsored by the late Rt Hon Cheryl Gillan DBE MP.
The Act requires the Government to produce an autism strategy, backed up by statutory guidance for the NHS and local authorities.
Now, a House of Lords special inquiry committee—which I chaired—has published a report examining the effectiveness of the Act.
Ministers have promised to use our recommendations to help them develop the new autism strategy due in July 2026.
We heard directly from dozens of witnesses and received nearly 400 written submissions—which we believe to be a record for a House of Lords 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.
Autistic people face unacceptable inequalities. 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.
Sixteen years of change
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 and autism strategies 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 broken 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 the evolving understanding of autism. But there are also signs that autistic people are struggling to cope and are seeking a diagnosis as a gateway to access even basic help. Services for autistic people are unable to cope with the numbers seeking assessment and support.
A new opportunity to deliver
The Government autism strategy for 2021 to 2026 set ambitions reflecting key priorities of autistic people and those who support them. However, after the first year, successive governments failed to produce any plan to deliver or fund the strategy.
The Government must now take a different approach, identifying priority outcomes, producing a costed, deliverable plan to achieve them, and making clear who is responsible and accountable for delivery.
Decisions about autistic people’s lives have too often been made for them, not by them. This has to change. Autistic people and those who support them must be meaningfully involved in every stage of the development and delivery of the new strategy.
From crises to timely support
Too often, autistic people reach a crisis point before they can access any help. We heard from young autistic people who have spent years in mental health hospitals for no good reason. This is a shocking waste of lives. It also costs the NHS millions every year.
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.
Responsibility and accountability for meeting autistic people’s needs are often fragmented, meaning services have little incentive to provide timely support.
To end this reactive, crisis-led approach, the Government must give public services incentives to invest in timely, preventative support. This will prove cost-effective in the long term.
The way forward
The new autism strategy is an opportunity for the Government to enable every autistic person to access the support they need to live a fulfilling life and to help create a more inclusive society. The work begins now. The starting point is to set realistic goals, make a plan to deliver them, monitor progress, and work together to build change.
