We recently spoke with the lovely people at the National Autistic Society to find out what autism really is and shed some light on this diverse yet not always well-understood disability.

 

How well do you understand autism? We asked the dedicated people at the National Autistic Society some questions to better comprehend this complex disability.

Can you define autism – and the autism spectrum?  

Autism is a lifelong disability that affects a person’s communication and interaction with the world – there are approximately 700,000 autistic people in the UK. Because it’s a spectrum, every autistic person is different and will have their own strengths and face varying challenges.

Some autistic people might need 24-hour care; others may need clearer communication or a little longer to do things at school or work. Without the right support and understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated.

What does autism involve?

If you’re autistic, you may find communication difficult and can feel intense anxiety in social situations or when you’re not given enough time to process information, like questions or guidance. Many autistic people are 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.

What is the role of the National Autistic Society and how does the charity support autistic individuals?

We are the UK’s leading charity for autistic people and their families. Since 1962, we have been campaigning for autistic people’s rights and providing support, information and advice to autistic people and their families. This includes running a number of specialist schools and social care services, a network of 117 branches, and training and employment programmes.

How has Coronavirus affected the National Autistic Society and its members?

Coronavirus has exposed and deepened existing inequalities, particularly among people with higher support needs, leaving many feeling stranded.

We’re doing all we can to help autistic people and their families through this. At the start of the crisis, we adapted much of what we do, for instance, by moving our branch network online, reworking our casework services and keeping our supporters up to date with the latest coronavirus information, making clear what this means to them.

Alongside our Left Stranded campaign, we’ve also pushed governments across the UK about exemptions on rules like face masks, exercise and care home visits. We will continue to do all we can to create a society that works for autistic people.

Is autism misunderstood? If so, how and in what way?   

We’ve all heard of autism, but far too few people know what it’s actually like to be autistic – both the strengths and challenges. The National Autistic Society continues to hear from autistic people who often feel misunderstood, struggle without the right support, or even feel judged.

The past year has brought particular challenges for autistic people and their families and a few positives for some. Nine in ten autistic people told us they worried about their mental health during the first lockdown, and 85% said their anxiety levels increased.

Many things need to change if we’re to create a society that works for autistic people, starting with the Government fulfilling the commitments laid out in the new all-age autism strategy for England, such as reducing diagnosis waiting times and funding a public understanding campaign.  It’s vital that every year of the strategy is properly funded, ambitious and sustainable – and that the Prime Minister keeps his promise to fix social care. We all have a role to play too, by finding out more about what it’s like to be autistic and the small things we can all do to make the world more autism-friendly.

A better understanding of autism across society, from schools to workplaces and decision-makers in local and national Government, would transform hundreds of thousands of lives.

What does the future for autistic people look like?

2021 could be an important year for autism, with the Government now having published its new all-age autism strategy for England. This sets out their plans to improve support and services for autistic people. For the first time, it includes both children and adults and covers everything from health and care to public understanding.

The current level of support for autistic people and their families isn’t good enough. In 2019, we found that:

• More than two in three autistic adults in England don’t get the support they need.
• Only 14% said that there were enough mental health services in their area.
• 50% of parents said their child had to wait more than a year for support at school.

Many other things need to change in order to create a society that works for autistic people. We’ll keep working with our campaigners and branch members to ensure that the autism strategy is implemented in local areas.  We’ll also keep pushing for the Prime Minister to deliver the social care reform he promised and for the Government to invest in autistic people and their families beyond the first year of the autism strategy through its Spending Review later this year. If this happens, it could transform hundreds of thousands of lives.

Scottish Autism and Learning Disability Commissioner 

National Autistic Society Scotland, ENABLE Scotland and Scottish Autism have launched the ‘Our Voice Our Rights’ campaign, calling on the major political parties to commit to a Commissioner for autistic people and people with a learning disability at the Scottish Parliamentary election.

Many of the major parties listened and committed to providing a commissioner for autistic people and people with a learning disability – SNP, the winners of the 2021 elections, included.

Welsh Code of Practice  

The Welsh Government has developed an Autism Code of Practice. The Code sets out what is legally required of local authorities, health boards and other public bodies that provide services to support autistic people and their families in Wales.

The Code of Practice on the Delivery of Autism Services responds to our calls for clear, legally binding duties to ensure support is available to autistic people and their families. And while we remain disappointed that a proposed Autism Act for Wales wasn’t successful, we are optimistic that the Code can strengthen the rights of autistic people meaningfully and improve the services available.

Along with hundreds of autistic people, their families and professionals, our charity has responded to the consultation on the Code to ensure it delivers the improvements in services and support that are needed.

The Code of practice is due to come into force on 1 September 2021.

Northern Ireland Autism Strategy Refresh 

The Government in Northern Ireland published an interim autism strategy, covering how they intend to support autistic people and their families from 2021-2022. The new strategy, which will cover a seven-year period, is in its early stages. Key stakeholders have been invited to be part of an autism forum to help consult on the strategy during its development. Currently, the Government is identifying key priorities that the strategy must address to better support autistic people and their families in the future.

The Northern Ireland Autism Strategy has not previously been allocated any funding. Still, it’s vital that that adequate funding is committed across the strategy in order for it to be truly effective in its aim. We will continue to campaign on this, and we hope this new strategy will be a step towards a society that works for autistic people.

References

News – Suicide prevention in autism recognised with impact …. https://www.nottingham.ac.uk/news/suicide-prevention-in-autism-impact-award

We need more understanding https://senmagazine.co.uk/content/specific-needs/autism-asd/7931/we-need-more-understanding-2/

National Autistic Society | VODG. https://www.vodg.org.uk/member/national-autistic-society/

World Autism Awareness Week: 5 things everyone should know https://teacakeclub.org/2021/03/30/world-autism-awareness-week-5-things-everyone-should-know/

Autism Awareness Week (29 March – 4 April) | The …. https://www.the-pda.org/autism-awareness-week-2021/

Autism Strategy for England. https://www.autism.org.uk/what-we-do/news/investment-in-support-for-autistic-people

New campaign in Scotland calls on political parties to …. https://www.autism.org.uk/what-we-do/news/scotland-urges-for-commissioner

Autism Code of Practice. https://www.autism.org.uk/what-we-do/campaign/wales/code-of-practice