When caring for someone with autism, its key to understand what your role may look like and the changes in the role you may experience over time. These changes will be as the person you are caring for going through their journey. These changes, like the transition to adulthood, can present new opportunities and challenges for both of you to navigate.
Here we offer a general introduction to the role of supporting someone with autism, and invite you to explore our further resources for more information.
Autism is a lifelong condition, not a medical illness, that affects how a person perceives the world, communicates, and interacts with others. The experience of autism is unique for each person who is born with it, and is a spectrum condition, meaning its particular characteristics and challenges can vary a great deal from person to person.
Some people with autism might need a lot of extra assistance to live their lives fully, whereas others are able to live independently with minimal support. People who have autism might be described as being ‘neurodivergent’ which simply means that their brains work in ways that differ from what might be viewed as ‘neurotypical’ or the norm.
Because of this neurodivergence, people with autism may find it more challenging to feel comfortable in everyday situations than those who are neurotypical, and may have certain challenges with social skills, communication, and/or regulating their emotions. Someone with autism might also be able to offer unique perspectives that most other people cannot perceive, and have the ability to develop their own particular skills and talents to a very high level. If you are a carer for someone who you feel may have autism and has not received a diagnosis, our guide to getting a diagnosis may be useful.
Caring for someone with autism involves providing support tailored to their specific situation. This might include helping the person you care for with daily tasks, providing practical and emotional support, and/or advocating for their needs in certain settings. The needs of the person you care for may change over time, especially in the transition to adulthood. Staying connected and informed via your support networks and preparing for changes where you can will help you both to navigate any changes as smoothly as possible.
Promoting the independence of someone with autism
Promoting someone’s independence means supporting them to feel confident and empowered to make choices and direct their own lives as far as they are able. How this looks will be different for everyone, and as a carer for someone with autism you are supporting the person you care for to lead a full, fulfilling life as independently as possible. You might be supporting them to manage everyday situations, like helping them to maintain a daily or weekly routine, cook for themselves, stay organised, and manage their money.
The person you care for may need support in connecting and communicating with others, in navigating relationships, and in finding strategies to cope in situations they might find challenging or stressful. They might need support in learning how to look after their health and overall wellbeing, and in developing the useful skills they need to stay safe and to access what they want in life. You may also be supporting the person you care for to explore the activities and experiences they enjoy, express their creativity and talents in the ways that feel best to them, and otherwise lead a rich, full life.
Helping someone with autism to communicate and maintain relationships with others
Someone with autism might find certain aspects of communication difficult, and this can make social situations, connecting with others and forming relationships challenging. Someone who is mute or non-verbal may not be able to communicate using the spoken word but will still have lots to express, and so supporting them to discover and develop their own preferred communication strategies will be key to them feeling empowered and confident. These strategies might involve using visual aids, social stories or other Augmentative and Alternative Communication (AAC) supports, and being able to let others know what they need by advocating for themselves where appropriate. Communication between people is all about exchanging information, and involves not only words but facial gestures, body language, eye contact and an awareness of personal space.
Because someone with autism sees the world in a very literal way, they may unaware of certain accepted social cues, and may not understand figurative language; the meanings of everyday expressions like ‘It’s raining cats and dogs…’ and ‘Watch your backs…’ would be unclear and confusing to someone with autism, for example.
Depending on their particular needs, you can act as a guide for the person you care for, helping them learn to recognise social cues and certain phrases. This will help them make more sense of what can sometimes seem to be a very confusing world around them.
Additionally, you can provide opportunities for the person you care for to practise their social skills in real-life situations, like role-playing conversations they might be expected to have, or encouraging them to take part in certain group activities.
This can all help build their confidence and boost their ability to communicate their needs and preferences whilst allowing others to express theirs too. Supporting the person you care for to be clear to others around them about which communication strategies work best for them can also help everyone to understand each other better.
Being able to communicate effectively means the person you care for will be more able to build and maintain important positive relationships with family, friends, colleagues, and those professionals in their support network. It will also help them to navigate social interactions outside of their familiar circle, and ensure they feel more informed and connected to the world around them.
Managing change and difficult social situations
Most people with autism enjoy familiarity and routine, and can often find unexpected changes and unfamiliar social situations very difficult. Certain behaviours, like repetitive movements, rocking or ‘stimming’, can be useful to someone with autism because they are coping strategies that feel good and can help them feel more relaxed.
Walking through a busy park or shopping centre may not seem like a challenge to those with a neurotypical brain, but to someone with autism, a scenario like this can feel very overwhelming as their brain will be struggling to deal with what can feel like a huge amount of information all at once. If someone is finding it difficult to regulate their emotions in the midst of a certain situation, it can lead to a distressing experience called sensory overload, and to other behaviours that might appear confusing or challenging to those who do not understand why the person might be behaving in this way.
In reality, someone with autism is attempting to regulate their fear and anxiety, and their behaviours are natural responses to certain triggers they are finding overwhelming.
What can you do to support someone with autism to manage change and challenging situations?
- Establishing consistent schedules and providing advance notice of any changes coming up can help someone with autism feel less anxious and can prepare them to feel more confident around transitions.
- You might use visual supports, like calendars or picture schedules, to share information with the person you care for about upcoming events or changes in routine in a clear and accessible way.
- Role-playing scenarios or using social stories to try out appropriate responses can also help them to better understand social expectations and feel more confident in unfamiliar situations and more challenging interactions.
- You could support the person you care for to develop their own toolkit of coping strategies too, like deep breathing and mindfulness exercises or other sensory regulation techniques, to help them manage their levels of stress and anxiety in challenging situations.
- Empowering the person you care for to be able to regulate their emotions, be aware of their own needs and communicate those needs to others when necessary means they will feel more independent and resilient when faced with change and social situations they may find difficult.
For more specific information on this topic, please see our carer’s guide to managing social situations when supporting someone with autism.
Adjustments workplaces can make to support someone with autism
More and more employers are becoming aware of autistic talent and the benefits of creating a neurodiverse workforce and recognising that some people might need additional support at work to enable them to undertake their role effectively. The Equality Act 2010 states that someone with autism has the right to ‘reasonable adjustments’ at work. In practice this might mean they would be entitled to receive support at every stage, from the application process, during an interview and within the role itself.
Support could include providing someone with assistive technology, adapted furniture or equipment, and a quieter place to work if an open plan office was too overwhelming. Certain changes might be made to their role, and they may be offered extra training and other tailored support to make their time at work more comfortable.
Future planning
As your needs and the needs of the person you care for change over time, it can bring peace of mind to consider plans for the future. Understandably, it can be difficult to think about a time when the person you care for might need you to make certain decisions on their behalf, or what might happen if you were not there to support them at some point.
However, it is important to have considered different situations and options to ensure the person you care for continues to receive the support they need, and you feel reassured there are certain plans in place. Our articles on emergency planning and capacity go into more detail and can offer more practical advice on these areas.
Accessing support for the person you care for
If the person you are supporting would like or need extra support to live as independently as possible, they are entitled to request a Care Needs Assessment from their local authority, or you can do this on their behalf. If they are eligible for support, a care plan will then be drawn up to address their particular needs. They will also be told about any benefits they are entitled to, and they might be eligible for a Personal Health Budget (PHB) to pay for certain aspects of their care, like practical support from a personal assistant or special equipment to meet their wellbeing needs.
If the person you care for is hoping to live independently, you might consider supported living (also known as assisted living) where they would have their own home or room within a house with their own tenancy agreement, whilst still receiving the support and care they need. Another option might include home care, where support would be provided in their own home to ensure they could live as independently as possible.
Accessing support for you as a carer
Speaking to your GP and the other health professionals involved is the best way to begin as they will be able to give you information about autism and what it might mean for the person you care for as they get older.
Researching reputable sites online and reaching out to condition-specific organisations for their insight and support, and to ask any questions you might have can be very helpful.
If you ever feel as if the responsibility of care is overwhelming or that you don’t have time for yourself, it might be that you are eligible for extra support. You can contact your local authority to request a Carer’s Assessment at any time, and this could provide you with respite or regular breaks from your caring role, help around the house, and other tailored support to ensure your wellbeing is being prioritised too.
Caring for an adult with autism is a challenging role, and it’s important that you recognise that you need support too. If you are caring for someone with autism, our in-depth article on the importance of looking after yourself as a carer is a must-read.