It’s time for people to get to grips with what it’s like to be autistic, writes Caroline Stevens
Almost everyone has heard of autism. But far too few people know what it’s actually like to be autistic – both the unique strengths and how hard life can be at times. I want the 2020s to be the decade where society changes, so autistic children and adults – and their families – are finally understood, supported and part of their communities, schools and workplaces.
There are some promising signs, with the Government set to publish an updated national autism strategy in the coming months and to extend this to children, alongside adults, for the first time. But real change won’t happen unless the strategy fully reflects the experiences of autistic children, adults and their families – and is backed up by funding, a wider reform of the social care and SEN and disability systems and, crucially, better understanding of autism across society.
World Autism Awareness Week (WAAW) is a fantastic platform to get everyone talking about autism – whether it’s the general public, politicians, health leaders or teachers – and finding outmore about what life can be like for the 140,000 children on the autism spectrum in the UK.
Autism is a lifelong disability. If you’re autistic, you tend to find communication difficult and can feel intense anxiety in social situations or when you’re not given enough time to process information, like questions in class. Many autistic people are also over or under sensitive to sound, smells, light, taste and touch – sometimes to extreme levels, for instance when bright lights cause actual physical pain. All of these can lead to someone becoming so overwhelmed that they experience a “meltdown” or “shutdown”, which can be physically and emotionally debilitating.
Every autistic person is different and will have their own strengths and difficulties. For instance, around 70 per cent of children on the autism spectrum attend mainstream school with varying levels of support needs. Mainstream school support could involve having a teaching assistant, an adjusted timetable or speech and language therapy. But other autistic children need more specialist support, such as autism-specific schools.
With the right support and understanding, many autistic children excel and achieve things they never thought they would – whether that’s living independently, going on to further education or getting a job they love.
Lack of support
But at the moment, there is not enough understanding and support. Far too many autistic people and families are struggling, even to get a diagnosis. In some parts of the country, people end up having to wait months, even years to get a diagnosis. These long waits can be traumatic for autistic people and families, who are often already vulnerable and desperate for help. And getting a diagnosis is often vital in being able to access support.
All too often, autistic children end up in crisis before they get the support they need. They can miss months or years of schooling and the opportunity to make friendships; some are formally or informally excluded and miss out on education altogether. This can be devastating for their mental health and long-term aspirations. Parents then have to fight for the right support, whether that’s in school, or from health and social care services. Many parents end up having to give up work so they can fill the gap in support.
What do autistic people want you to know?
Autistic people and their families recently told the National Autistic Society the top five things that they want everyone to understand about autism. These are that autistic people may:
1. feel (sometimes intense) anxiety about change or unexpected events
2. be (in some cases extremely) under or over sensitive to sound, smells, light, taste and touch (called sensory sensitivity)
3. need extra time to process information, like questions or instructions
4. face high levels of anxiety in social situations
5. have difficulties communicating and interacting with others.
The 2020s offer a genuine chance for change. The Government will review the national autism strategy for England and set out its commitments to improve support for autistic people in a number of areas – from social care support to employment. And, crucially, the Government is extending this to children and young people for the first time, following campaigning by autistic people, their families and charities. It has also been announced that the Government is soon to do a major review into SEN and disability.
The updated strategy and review are opportunities to drive forward improvements in education, health, care and public understanding, and make sure that no autistic child or adult is held back from reaching their full potential. It is essential that the new strategy supports full implementation of the Children and Families Act 2014 and the SEN and Disabilities Code of Practice; at present, too many autistic children are not receiving the support that the law says they should have.
The Government clearly has a huge role to play in leading the changes autistic children, adults and their families need. But this must be accompanied by change in every part of our society, starting with improving our understanding of autism. This will help to change attitudes, transform lives and ultimately create a more inclusive society. And what better opportunity could there be to do this than World Autism Awareness Week?
Better understanding of autism could transform the lives of hundreds of thousands of autistic people. Together, we can achieve this.
About the author
Caroline Stevens is Chief Executive of the charity the National Autistic Society.