An unfolding human rights emergency
Autistic children, young people and adults face some of the greatest inequalities in society. Life expectancy is 16 years lower than the general population, and 30 years lower for autistic people who also have learning disabilities. Only 20% of autistic people are employed, compared to over 50% of disabled people. Less than half of autistic children and young people say they are happy in school, and only 20% of autistic children achieve grades 5 or above in English and Mathematics GCSEs, compared to almost 52% of all pupils.
Although there have been some positive changes – for example, in levels of autism awareness amongst employers – progress in reducing these stark inequalities remains slow. On top of this, the current tightening of financial conditions, compounding years of underinvestment in essential services, means we are now in danger of going backwards.
Across the country, we are hearing stories of autistic people being torn away from their families, denied the services they desperately need, and fighting for their basic right to assessment for care and support. In education, we are hearing about autistic children and young people failed by the mainstream school system, excluded and condemned to poor life chances. And in health, the proportion of autistic people in inpatient mental health hospitals is higher now than it was in 2015.
Demand is rising, as more children, young people and adults are identified as autistic. But services cannot keep pace. Individually there are some examples of good practice, but the system as a whole is under too much strain.
The ADASS Annual Spring Survey 2022 found that only 12% of Directors of Adult Social Care were fully confident their budgets would enable them to meet their legal duties under the Care Act 2014, through which local authorities must meet eligible needs for care and support, including for autistic people and their families.
The same survey found that 82% lacked confidence in their ability to meet their specific duty to promote a diverse market of high quality care provision – a major reason why autistic people so frequently fail to have the right support.
For charities and others providing services in the community, it has never been so tough. Contracts are being ‘handed back’ to councils because providers, in all conscience, cannot provide the care and support that autistic people need. And the consequence of failure to provide the right support now is an escalation of need, and cost, in the future.
The underlying drivers are not hard to find. Adult social care is near to collapse after decades of underfunding. Care providers cannot recruit the workforce they need because of a shortage of skills, and wages for carers are lower than those received by supermarket staff. The SEND system in education remains chronically underfunded.
The Government is looking to maximise value for the public funds invested in services, as it should. But the level of funding for SEND and social care is simply too low: and without urgent additional investment, together with an effective workforce plan, even more autistic children, young people and adults will fall off the map.
This is an unfolding human rights emergency – and amongst the huge challenges created by current financial conditions, there is a risk it could continue by default.
Higher costs and scarcer resources are challenging for everyone. But it’s at precisely these times we should work together to ensure that those with additional needs are safe and well.
Having a dedicated strategy for autism in England underpinned by dedicated legislation is positive, but will have little effect unless the strategy is implemented well and the underlying system-level issues are addressed.
The Autism Alliance is a movement for change. By showing the reality for autism charities and the people they support, reflecting together on good practice, and developing new evidence, we want to work with Government, health leaders and local commissioners to find better ways to meet the needs of all autistic people and their families.
It’s important always to ask ‘is change really happening, and if not, why?’ For autistic people, this question is essential. Too often the commitments and good intentions of the past 20 years have not led to real change. But with determination, humanity, and the discipline of focusing on the whole system, we can build a better world in which autistic people can thrive.
December 2022