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Caring for someone with a learning disability or autism

Learning disabilities affect how somebody learns new things, understands complicated information and communicates. People’s experiences with learning disabilities can be significantly different depending on the severity and type of disability. Some people with mild learning disabilities just need a little longer when they learn a new skill. Others with more severe learning disabilities may struggle to do day-to-day tasks independently. People with what is known as profound and multiple learning disability (PMLD) can have problems with seeing, hearing, speaking or moving.

Autism is ‘a lifelong developmental disability which affects how people communicate and interact with the world’. [1] As with learning disabilities, because autism is a spectrum condition, it can affect people in vastly different ways. People with autism often have difficulties with social communication and interaction, display repetitive behaviours and can become heavily focused on particular interests or hobbies. They can struggle with anxiety and be over- or undersensitive to sounds, light, touch, tastes, smells, colours or temperatures.

Just as the experience of everyone with a learning disability or autism is unique, so is the experience for you as their carer. It may even vary from day to day. Some days you may feel completely overwhelmed by your caring role. But other days you may find it very rewarding and feel grateful for the time you are able to spend with the person you care for.

To help you with your caring role, we have provided advice and guidance on a range of relevant topics.

The amount of help and support you will need to provide for your friend or relative will vary hugely depending on their disability. Some people will require round-the-clock help with every element of day-to-day life. Others will just need a little extra support, but can manage most things independently.

In either case, the most crucial thing you can do as their carer is to try and put yourself in their shoes, and really understand what they are feeling at that moment. This can sometimes be difficult because the way they experience the world is likely to be quite different to you. If it is appropriate, ask them what help they need from you, and how they want you to provide this help. This can allow you to better understand what they might need.

You should aim to support the person you care for to do as much of every task themselves as they can, rather than just stepping in and doing things for them. This can sometimes mean everything takes a bit longer, but it is vital for developing and maintaining their skills, independence and self-esteem.

Some people with a learning disability or autism may find everyday tasks can upset them or make them anxious. For people who are oversensitive to touch and smell, for instance, having their hair washed can be a very uncomfortable experience. It can therefore help if you create an environment for them which is as calming as possible. This can include minimising bright or flashing lights, reducing background noise and avoiding strong smells. Try to keep a note of any particular triggers, such as a specific brand of shampoo or a certain temperature of bath water, so you know what to avoid in the future.

You may also find that the person you care for particularly struggles with change. One way to deal with this is to minimise any unnecessary changes in their life. Other carers of people with learning disabilities and autism have also found it helpful to make sure the person they care for has consistency, a set routine and clear expectations for each task. Others have recommended making a visual timetable for their day.

One way to help the person you care for deal with inevitable changes is something called ‘social stories’. These are short descriptions of the change that will be coming and why it is happening. They make the information you might want to convey more literal and concrete and remove any ambiguity around it. For more information about social stories, take a look at this guide from the National Autistic Society.

And for more specific advice about day-to-day tasks that you might need to provide help with, take a look at our guide ‘Helping someone with everyday tasks’.

People with learning disabilities who are aged 14 and over are encouraged to get a free annual health check. This will help them to stay well, and allow their GP to spot any issues early. The doctor will check their weight, heart rate and blood pressure, as well as taking blood and urine samples. They will also ask the person you care for some questions about their health and any medications they are taking. To access the health check, your friend or relative needs to be on their GP’s learning disability register. If they are not already on this, then you could talk to their GP about being added.

If the person you care for is autistic but does not have a learning disability, then they are not currently eligible for this health check. If you have a particular concern about any element of their health and wellbeing, however, you should still consult with their GP as soon as possible.

Flu can be particularly serious for people with learning disabilities and autism, so it is important that they get the flu jab annually. If you are their main carer, then you could be eligible for a free flu vaccine too, so why not get them done together?

The flu jab is usually available from Autumn onwards every year and can be booked through many GP practices and pharmacies. A number of the larger high street pharmacy chains even have an option to book an appointment online.

Even if you or the person you care for don’t meet the eligibility requirements for a free NHS vaccine, then you may still want to have one privately. They usually cost between £10 and £15, with supermarket pharmacies often being the cheapest option.

Alongside the normal, day-to-day events, you will occasionally encounter things that are out of the ordinary. Although it is not always easy to plan for these, it can still help to learn about them in advance so that you feel more prepared. This will help you to stay calm and feel in control in what can sometimes be very stressful situations.

You can take a look at our guide ‘Planning for emergencies as a carer’ for more information.

It is very common to worry about the financial implications of looking after a friend or relative, and it can be confusing to understand the support that is available and how you can access it. The good news is we have got a full and comprehensive overview of everything from benefits to grants in our ‘Getting financial support as a carer’ guide.

Caring for someone with a learning disability or autism can be a big responsibility, but many people are still able to combine this role with paid external work as well. If you want to be able to do both, take a look at our guide ‘Working when you are caring’ for advice on how to manage this balance successfully.

Caring for someone with a learning disability or autism can significantly affect your relationships. Some carers find that they become closer with the person they care for through spending more time with them. In many cases, however, it can put strains on your relationship. This can be particularly pronounced when caring for someone with a learning disability or autism as they could well struggle with communication, making misunderstandings between you more likely.

Alongside this, becoming a carer can also have an impact on all of the other relationships in your life too, both positively and negatively. If you are caring for a child with a learning disability or autism, for instance, it can have a huge impact on your relationships with any other children you might have.

For advice and support on ways to manage this, take a look at our guide ‘How your relationships can change when you become a carer’.

As a carer it is common to prioritise the person you care for’s needs over your own. But it is vital that you make sure you also look after yourself. Not only are your own needs important, you also need to stay well so that you can keep looking after your friend or relative too. Take a look at our ‘Looking after yourself as a carer’ guide for advice on how to keep yourself well.

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Stories: Caring for someone with a learning disability or autism

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