With Tim Nicholls, Head of Policy at the National Autistic Society
If you're seeking an NHS diagnosis for autism for your child or yourself, you are still almost certain to have to wait a significant period of time. It also still takes persistence, as it's quite possible that before you get an appointment, you'll be told by a non-specialist health or education practitioner that it can't be autism because they "do eye contact", or seem to be able to mix socially, or some other explanation that isn't supported by up-to-date evidence.
Once diagnosed, finding the right education, employment, or support for independence and living, is likely to be difficult. The 2009 Autism Act was meant to improve things, but it's taken until 2021 to include under-18s in this, the third Autism Strategy for England: The national strategy for autistic children, young people and adults: 2021 to 2026.
The Government thinks England has, "...made significant headway in tackling the inequalities people face over the last 10 years... Although we’ve come so far over the last decade, there must be no limit to the ambitions of autistic people; they should have the same opportunities as everyone else in society."
So now the strategy includes children and young people, what does it actually mean in practice? Tim Nicholls, Head of Policy at the National Autistic Society, has written for SNJ to explain more.
The new autism strategy is a huge moment - but it won't succeed by itself
by Tim Nicholls, Head of Policy at the National Autistic Society
The Government recently released its long-awaited autism strategy for England – and the first one to include autistic children and young people. It sets out how the Government plans to support autistic children and adults over the next five years, with £75 million of funding for the first year of the strategy. It includes important commitments to train education professionals in autism, tackle long diagnosis waiting times, and improve the public's understanding of autism.
The National Autistic Society and our supporters have been campaigning for an ambitious and fully funded strategy for a long time. So, this is a huge moment. But true change for autistic children and young people will depend on the Government’s upcoming SEND review and the funding it dedicates to future years of the strategy.
What’s in the strategy for children and young people?
The strategy promises to:
- Improve understanding of autism by training education professionals, with £600K dedicated to training.
- Invest £8.6 million to improve engagement of families and children in planning SEND services and policies at local level.
- Cover autism in a new anti-bullying campaign beginning in September 2021.
- Support more autistic people into employment, and ensure autistic young people can find supported internships and apprenticeships.
- Invest £10.5 million into finding new ways to reduce diagnosis waiting times for children and young people. On top of £40 million through the NHS Long Term Plan to improve capacity in crisis services and support children with complex needs in inpatient care.
- Improve understanding and acceptance of autism within society by providing a long term nationwide public understanding campaign.
We are expecting, and we will campaign, for further financial commitments for 2022 onwards after the Government sets out its long-term spending promises in the Spending Review.
Why the Autism Strategy is important
National Autistic Society campaigners have long demanded better support and services for autistic people, for instance through our Not Enough and Left Stranded campaigns and by highlighting inequalities across society.
Before the pandemic, four in10 parents told us their child’s school didn’t meet their needs. Half said their child waited for more than a year for support to be provided at school. This was devastating for autistic children and for their families too. And, as we wrote in SNJ last year, the pandemic disproportionately impacted the mental health and education of autistic children and young people. The Government’s strategy has committed to tackle many of these inequalities with some concrete proposals and funding in its first year.
Six in 10 young autistic people we spoke to said the main thing that would make school better for them was having a teacher who understood autism. A key part of the strategy for children and young people is the promise to deliver autism training to educational professionals, to help them understand autism in a meaningful way and better support autistic pupils.
There are also important commitments to deliver an anti-bullying campaign starting in September 2021 and, crucially, to reduce diagnosis waiting times and improve mental health support for young autistic people. It’s unacceptable that some children have to wait many months and even years for a diagnosis and that around 70% of autistic people develop mental health problems.
Better engagement, better work
Across all Special Educational Needs and Disabilities, the Government will invest £8.6 million to improve the engagement of families and children in the planning of SEND services and policies at local level, too-- including supporting England's Parent Carer Forums. This is intended to provide opportunities for parents and carers to communicate their views and have significant input with the planning and delivery of SEND services.
Office of National Statistics (ONS) figures suggest that only 22% of autistic adults are in any kind of work, so it’s crucial that young autistic people are given clear pathways to employment. To make this happen, the Government is proposing to make sure autistic young people can get supported internships and apprenticeships too. Help will be provided to local areas for Supported Employment Forums, bringing together employers, JobCentres, education providers, local authorities, and young autistic people and their families, to discuss employment opportunities in their local areas.
However, the true impact of the strategy on autistic children and young people will depend on:
- Backing the aims of the strategy by providing full funding beyond 2022
- The upcoming SEND review, which the Government has repeatedly delayed
The SEND review must ensure all teaching staff receive high-quality autism and neurodiversity training. We’d like to see a ‘whole school approach’ applied to education, helping to build the capacity of school leaders and staff to create autism-friendly cultures, implement evidence-based strategies, and improve outcomes for autistic students. This approach has been successfully adopted in specialist hubs, such as our Cullum Centres, which are specially designed for inclusive learning.
The review must make certain all autistic children receive the upfront educational support they need, when they need it – not after long waits and hard battles. It must also tackle unlawful exclusions and off-rolling, making it clear that exclusions without trying reasonable adjustments are illegal. SEND inspections should also become permanent and written statements of action must be followed by support across education, health and care.
Next steps and getting involved
The autism strategy is underpinned by legally binding guidance to councils. Each council and NHS body now needs to look at the strategy to see how it can improve its local services. Nearly every council has an 'Autism Lead' or an 'Autism Partnership Board' who oversee the carrying out of the strategy. You can make sure the strategy works for autistic people in your area by joining our campaigns or getting involved with your local Autism Partnership Board through your council (Searching "Autism Partnership Board" and your LA name should bring it up)
At the National Autistic Society, we will keep working with our campaigners and branches to keep pushing for ambitious investment in autistic people beyond the first year of this strategy and for the SEND review to lead to meaningful changes. If this happens, the strategy could truly be a significant step towards a society that works for autistic children and young people.
Find out more about autism, the strategy and how to get involved: autism.org.uk
- Failure to specify and quantify SEND reports – what options do families have?
- Improving autism training in schools: A good practice example.
- Urgent action needed to train all teachers in Autism
- The frustration and heartbreak of Pathological Demand Avoidance
- Parliament autism group calls for more autism training, speedier support, more understanding
- What causes autism… what doesn’t?
- Helping autistic learners recover from pandemic educational losses
- Teaching social context to children with autism and why it’s vital for safeguarding
- New Autism Toolkit launched to get support for children #RightFromTheStart
- Whole School SEND Spotlight: The Autism Resource Suite
Join the SNJ “Patron” Squad & get exclusive content!
Become a Patron!
- The first SNJ Patrons' EXCLUSIVE SEND update Newsletter of 2023 is OUT NOW! If you're a patron and you haven't received it check your spam. No joy? Get in touch.
Don’t miss a thing!
- ‘Why making maths accessible is so close to my heart’ by Carol Vorderman (Free offer) - February 7, 2023
- In support of striking teaching staff… SEND children need the right support and so do their teachers - February 1, 2023
- The autistic girls are out there: Losing the gender bias in diagnosing autism - January 10, 2023