Autism: where we are in 2019


Mark Lever looks at what it’s like to be autistic and examines the state of public understanding of autism

Most people have heard of autism now. But most don’t understand what it can actually be like to be autistic and the various joys and challenges autistic people will experience throughout their lives. Unhelpful stereotypes are still far too commonplace. 

When things go wrong for autistic people and their families, the root cause is often a lack of understanding. It could be an autistic girl who has been unfairly excluded from school, a young autistic man who has never been able to find a job, or a parent who has spent years fighting for a diagnosis and recognition of their son or daughter’s needs. 

On top of this, autistic people continue to face judgemental attitudes from the public – 87 per cent of families say people stare and 74 per cent say people tut or make disapproving noises about behaviour associated with their child’s autism.

This lack of understanding is holding back far too many children and in some cases pushing them and their families into isolation.

World Autism Awareness Week (1 to 7 April) is a great opportunity to get everyone talking about autism in a meaningful way, whether it’s the general public, politicians, health leaders or teachers. By helping people to understand autism better and to appreciate the diversity of the autism spectrum, we can help create a more accepting society that works for autistic people.

This is particularly important in 2019 when the Government is reviewing the English autism strategy (which sets out the support autistic adults should receive) and planning to extend it to children and young people for the first time. We need them to understand the diverse experiences of autistic people and the current gaps in support, including in schools.

What is autism 

Autism is a lifelong disability which affects how people communicate and interact with the world. Autism is a spectrum condition. This means autistic people have their own strengths and varying and complex needs, from simply needing clear communication and a little longer to do things, to 24-hour care.

Although everyone is different, children and adults on the autism spectrum may:

  • find noise, smells and bright lights painful and distressing
  • be unable to or find it harder to speak, face delays processing information or find it hard to hold conversations
  • experience intense anxiety around unexpected change and social situations
  • become so overwhelmed that they experience debilitating physical and emotional “meltdowns” or “shutdowns”.  

Around 120,000 school-aged children in England are autistic and the vast majority (73 per cent) are in mainstream school. Many autistic children can become overwhelmed at school, by the bright lights, loud noises or unpredictable behaviour of other children. Without the right support and understanding, it can be almost impossible to learn and can even lead to children missing out on an education altogether and becoming extremely isolated.

An opportunity for change 

2019 is the tenth anniversary of the Autism Act, which was a landmark in the battle to improve the lives of autistic adults and their families in England. It created an autism strategy and statutory guidance, which put a legal duty on government, councils and health services to provide specific support for autistic adults. The Government’s upcoming review of the autism strategy is an opportunity to improve support and ultimately the prospects of autistic children across the country and future generations.

While the implementation of the Autism Act is still patchy, it has led to some important tangible change. Almost every area now has adult diagnosis services and a commissioner who’s responsible for autism; in 2009, just 48 per cent of areas had a diagnosis service and only 39 per cent of councils had an autism lead. Although waiting times are still too long, a generation of autistic adults now have access to a potentially life changing diagnosis.

And now the Government is going to extend the strategy to children. This represents an acknowledgement from ministers that far too many children on the autism spectrum are currently held back from achieving their potential, and an acceptance that we need a national approach to improve the support that is offered to children and their families.

Gaps in support

Autism charities hear every day from parents of autistic children that they are waiting for years to get a diagnosis, a decent education or basic support for their children. This can have a devastating and lifelong impact, often affecting the whole family’s mental health or children’s long-term chances in life.

A recent inquiry by the All Party Parliamentary Group on Autism found that half of parents wait more than a year for the right education support for their autistic children, and over four in ten were turned away the first time they asked for an assessment for support for their child. And autistic children are three times more likely to be excluded from mainstream school than people without SEN. This is not good enough.

The Government’s extension of the autism strategy is an opportunity to make sure that all school staff understand autism and that there are the right services available in every area for autistic children. By making sure the strategy puts this in place, the Government can help reduce social isolation and open up opportunities for autistic people of all ages.

Everyone can help 

It’s important that we don’t leave it all up to the Government. To really improve the lives of autistic people, we need concerted action at every level of society. It sounds like a small thing but just finding out a bit more about autism and talking to friends, classmates and colleagues can make a huge difference. Indeed, autistic people and their families tell us that increasing public understanding of autism is the most important thing we should be doing.

If we all work together, we can create a society that works for autistic people.

Further information 

Mark Lever is Chief Executive of the charity the National Autistic Society:

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