National Autistic Society – Written Evidence (LOL0097)

Introduction

1.       Autism is a lifelong disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that while there are certain difficulties that everyone on the autism spectrum shares, the condition affects them in different ways. Some autistic people are able to live relatively independent lives, while others will need a lifetime of specialist support. It affects more than one in 100 people in the UK.[1]

2.       The National Autistic Society is the UK’s leading autism charity. Since we began more than 50 years ago, we have been pioneering new ways to support people and understand autism. We continue to learn every day from the children and adults we support in our schools and care services. Based on our experience, and with support from our members, donors and volunteers, we provide life-changing information and advice to millions of autistic people, their families and friends. We also support professionals, politicians and the public to better understand autism, so that more autistic people of all ages can be understood, supported and appreciated for who they are.

3.       The National Autistic Society provides the secretariat to the All Party Parliamentary Group on Autism (APPGA). We supported the APPGA in carrying out an inquiry in 2019 into the impact of the Autism Act 2009, a landmark piece of legislation that remains the only piece of legislation dedicated to improving support and services for a specific group of disabled people. The Group’s findings, and recommendations for the new national autism strategy that is due to be published in early 2021, are set out in a detailed report.[2]

4.       This submission will address how the coronavirus outbreak has accelerated our already increasing reliance on digital technology and how this has affected people on the autism spectrum. This submission will consider what this means in relation to public attitudes, autistic people’s health, social and economic wellbeing, quality of working life and access to physical health and mental health services. The National Autistic Society is happy to provide any further information that the Committee would find useful, or to provide oral evidence if required.

Autism as a disability under the Equality Act 2010

5.       The Equality Act 2010 is clear that autism is a disability, in terms of it being an impairment that has a long-term and substantial adverse effect on the autistic person’s ability to carry out normal day-to-day activities. However, for many people on the autism spectrum, autism is a hidden disability. This means that the wider public may not be aware of the things they struggle with and their need for support or adjustments.

6.       It may not be obvious that a child or adult on the autism spectrum has a disability until their needs are not met to the extent that they become clearly overwhelmed. As a result, their behaviour may be perceived as ‘challenging’ if they are unable to follow instructions or fit in with existing societal rules and structures. It is important to recognise that an autism meltdown is not the same as a temper tantrum, and that ‘challenging’ behaviour is in fact ‘distressed’ behaviour.

7.       The Government has recognised that people with hidden disabilities often do not get the support or understanding they need to live their lives as fully as possible or to participate in the communities. This was spelled out by the then-Transport Secretary Chris Grayling MP in June 2019 when he extended the Blue Badge scheme, saying: “As a society we don’t do enough for people with hidden disabilities.[3]

8.       At this time of national crisis during the coronavirus pandemic, it is more essential than ever for everyone to be aware that not all disabilities are visible – including businesses and organisations moving towards a digital approach.

9.       It is imperative that businesses and organisations seeking to move their work online, including public services such as health services, understand that autism affects different people in different ways. Whilst digital services may be appropriate and work for some autistic people, they won’t work for others – and so it is important that choice and flexibility is offered.

Autism and digital services during the coronavirus outbreak

10.   The coronavirus outbreak and ensuing lockdown has changed the lives and daily routines of most people in the country. While this has been hard for everyone, it is particularly challenging for autistic people, who typically experience intense anxiety and extreme unease around unexpected change. They may also need more time to process information and instructions.

11.   Adjusting to the sudden change in their lives and routines is a huge challenge, alongside concerns about the availability of health services or special educational support. Changing daily routines to access digital services online, for example, has been a challenge for many autistic people and some have missed out on support as a result.

12.   Many autistic people can find in-person social interactions, visiting new places or dealing with loud and overwhelming environments challenging. For some autistic people, the option to access services or socialise digitally has helped to alleviate these challenges. These benefits cannot be lost as we return to life after the pandemic.

13.   However, we are worried about the potential impact too much of a reliance on digital technology would have on autistic people. Manyl autistic people, for example, cannot, or choose not to, use the internet. And, our recent Left Stranded report found that compared to the general public, autistic people were seven times more likely to be chronically lonely during June and July and six times more likely to have low life satisfaction.[4]

14.   Our report also found that the impact on mental health and loneliness was felt most strongly on those with higher support needs, who also reported significantly lower life satisfaction. This was also true of autistic women and non-binary people. We are worried that autistic people with higher support needs may be less likely to be access and use the internet, and so it is essential that the option to access services and social interaction, where possible and safe to do so, continues.

15.   It is clear that the pandemic has placed additional pressure on the mental health of autistic people, making them vulnerable. While support has been available digitally or on the phone and has been vital for many, for some autistic people it isn’t accessible and doesn’t work.[5] It’s vital that research is conducted to understand what digital or online support works for autistic people and what the barriers are. In the meantime, services must continue to be held in person wherever possible for the autistic people who need them.

16.   We are currently working on a project which seeks to understand what barriers there are for autistic adults, young people and children trying to access mental health therapy, as well as what adjustments to therapies would better suit autistic people’s needs. Early results from focus groups and individual interviews with autistic people, family members and mental health professionals show that many autistic people struggle to use digital technology at all – something that this committee must consider in its recommendations. For some autistic people on the other hand, it is more convenient and a better option to have support from family members or loved ones when accessing digital mental heath services, if appropriate. Some therapists have reported noticing better outcomes in autistic people who benefit from digital technology-specific adjustments to therapy. We will publish full results of this project in 2021.

17.   Early findings from the project also show that for those autistic people who have found mental health services more difficult to access online, for some this was because they found body language harder to read digitally. For others, it was because of sensory differences, for example struggling with noisy feedback and interference from online connections. These issues make video calling hard for some autistic people as opposed to face-to-face services and have led to some autistic people not accessing any support.

18.   When some therapists have reported success with digital appointments it is often due to autistic people having more control over the appointment, including the option to turn off the camera, the convenience of staying at home, and having family members facilitate meetings or join them if appropriate.

19.   Whilst digital services will work for some autistic people, it won’t work for all. Autism is a spectrum condition, affecting people in different ways and with differing levels of support needs – and so any organisation seeking to take a digital approach in their services must consider this.

11 December 2020