Caring for someone with autism

Around 1% percent of the population have an autism spectrum condition, according to research. Everyone on the autistic spectrum is different, but they all have some degree of difficulty with social interaction, communication and imagination.

People on the autistic spectrum may therefore struggle with social activities, such as having conversations, non-verbal communication, understanding social norms, and making friends.

Another common trait of autism is displaying restricted, repetitive patterns of behaviour, interests, or activities. This could manifest in needing to follow routines or rituals, or making repetitive movements.

Autism is often diagnosed alongside other conditions, including attention deficit hyperactivity disorder (ADHD), visual impairment, learning disabilities, epilepsy, dyspraxia, dyslexia, Down’s Syndrome, and hearing impairment. Depending on their multiple conditions and needs, some people with autism require more support than others, and can, in some cases, require care.

Autism care tips

Care for people on the autism spectrum is usually in the form of home care from a Care Professional or is provided by family members.

Many autistic people can benefit from personalised specialist care, which means they are involved in the design of their care to ensure the best quality of life and as much independence as possible. There should also be an emphasis on supporting them to improve their communication and life skills.

It should also be in the caregiver’s mind to empower the person to reach goals, and ensure they have good mental wellbeing and physical health. But one of the most difficult aspects of being a caregiver for someone living with autism is understanding what life is like for them, and knowing how best to support them.

Care Professionals will often have to adapt as the person’s symptoms and abilities change, both short term, and in the long run. It’s essential that care meets the needs of different conditions a person has been diagnosed with, and understanding when more support may be required. For example, a person on the autistic spectrum who also has a diagnosis of ADHD may require more care than a family member is able to give at a certain point in time.

For professional and family caregivers, it’s important to promote independence and tailor care to the individual’s needs, to help with self-care, but also try to encourage them to do things themselves where possible.

Developing self-care skills, such as bathing, can be an issue for some people on the autism spectrum. They may have sensory differences, such as a heightened sense of smell or touch, that makes washing or grooming uncomfortable for them.

In this situation, it’s advised to keep a record of how the person reacts to different types of products, such as cloths and shampoos, to see if there are certain types of products that they are uncomfortable with, as well as different stages of their daily routine. For example, you may find they prefer baths over showering, or a softer sponge than a cloth.

Communicating with someone with autism

Most people on the autism spectrum have difficulty interacting with others, and everyone’s abilities are different. Some people may find it harder to communicate their needs, whereas others may struggle more with small talk in social situations.

Many autistic people find it difficult to filter out less important information and know which bits are important to focus on. For this reason, it’s important that carers try to avoid information overload.

If an autistic person has difficulty communicating, it’s advised to speak slowly and get information across in fewer words. It’s best to use specific key words, repeating them if necessary, pausing between words to allow time for the person to process them, and avoid too many questions or figurative language, such as idioms, or sarcasm.

Safeguarding for people with autism

Autistic people may be at higher risk of being abused than other people, as they can find it difficult to interpret people’s motivations, or see red flags when they are being taken advantage of.

It can also be more difficult for caregivers to detect they are being abused as they may have limited speech, or struggle to communicate their emotions. This is why it is important to notice, monitor and try to understand changes in behaviour, and flag anything with the relevant person or authorities if you suspect anything.

Autistic people can be left out of conversations about relationships, as it’s sometimes assumed they wouldn’t understand. This means they are kept in the dark about what is and isn’t acceptable behaviour, and how to keep themselves safe. But talking about abuse can help people stay safe.

For Care Professionals who find it uncomfortable, but feel there’s a need to bring up the topic of sexual abuse, they can use The Underwear Rule, a widely used tool that has been developed to help start this conversation in a clear and easy way.

The importance of looking after yourself

For family caregivers, it’s very important to prioritise self-care. Caring can be a demanding, and often isolating, task, and carers can often find they’re juggling a lot of responsibilities.

It’s easy to drop your own routine, such as your social life or weekly workout or cinema trip, to make time for your caring duties, but the most effective caregiver is one who is mentally and physically healthy. This means you need to get enough sleep and exercise, and make time to relax.

Caregivers can also look into respite, which allows you to have a short break from your caring responsibilities.

Autism support and advice

Family caregivers can enquire with their local social services to see if they are eligible for financial support. Local authorities will also be able to advise on any local support groups or day centres that might be applicable.

You can visit the AutismSpeaks website, which provides links to community outreach efforts, and information on financial support. There are also online courses available around safeguarding, if you feel this is something you need to learn more about.