Are you an autism carer looking for support? Whether you’re a family carer or a professional care worker, we know that providing care and support can be difficult. In this article, we’ll look at the autism support you might need, the funding available, and how to access autism help.
When people think of autism help, they mostly think of the care that the autistic person needs. However, if you’re a carer for an autistic person, you’ll know that you may need support too.
Autism carer: how do I know if I’m a carer?
If you’re a paid care worker and provide personal care, it’s easy to know that you’re an autism carer. However, if you’re a family member, sometimes it can be harder to tell.
Ask yourself the following questions:
- Do I help them with washing, dressing, or getting out of bed?
- Do I help them with taking medication?
- Do I do their shopping, cleaning, laundry, or food preparation?
- Do I pay their bills or help with other day-to-day admin for them?
- Do I need to be with them most or all of the time because they can’t be left alone?
If you’ve answered yes to any of these questions, you might be a carer. Check if you might be eligible for carer’s allowance.
Autism help: what do you need?
Providing autism help can be time-consuming, as well as being a physically and mentally taxing role. Because of this, you might feel you could benefit from a variety of different types of support. Everyone’s circumstances are different, and the help you require may depend on the needs of the person you support.
It can be difficult to know what options are available, and how to access support for carers of autistic people.
We’ve put together a brief list of some of the things you may find helpful, and how you may be able to access them.
Autism help around the home
You may need help with housework, cooking, laundry or shopping. When providing autism support, these tasks often end up as a low priority.
You may be able to access help around the home in the following ways:
- Asking friends or family members for assistance
- Hiring a cleaner, meal service, or laundry service
- Arranging supermarket deliveries rather than going out to the shops
Autism support groups
You may want to talk to other people in similar situations. In-person or online support groups allow you to share your experiences, challenges and joys with other carers. You may be able to find general carers’ groups, or groups specifically for carers who support autistic people.
How to find support groups:
- Ask your GP, social worker, or other health or social care professionals for local recommendations
- Look at community noticeboards
- Look on websites such as the Carers Trust or the National Autistic Society
- Search on social media
Training
If you’re struggling with a particular aspect of being an autism carer, you may be able to find training sessions that can help. This may include practical training, such as how to lift safely.
How to find training:
- The Carers Trust has information about a variety of online courses for carers
- The NHS lets you search for training near you
- You can also ask your social worker or other health and social care professionals about accessing training
Respite care
Respite care is where the person you support is looked after by someone else for a time. This may be for a few hours while you do some shopping or go to an appointment, or for a few days or weeks while you’re ill or on holiday.
The person you support may be looked after in their own home, or in a day centre or residential home.
You may be able to access respite care in the following ways:
- Asking a friend or family member to support the autistic person while you are away
- Contacting a service directly
- Contacting your local authority to ask about services
- Looking online for local charities that may offer respite care
Mental health support
It’s very normal for autism carers to feel overwhelmed at times. However, sometimes feelings of depression and anxiety are persistent.
If you’re concerned about your mental health, you may need support from a medical professional. Your GP could refer you for counselling or prescribe medication to help, or you could make an appointment with a private counsellor.
Funding for autism help
Support for autism carers may cost money, depending on the type of help you need. Many support groups are free, and there’s a variety of free training courses available. However, if you want to access respite care or help around the home, you’ll probably need to pay.
You may be able to pay for this out of your own income or savings (known as self-funding). However, as a carer, you may also be entitled to funding from your local authority.
You can request a carer’s assessment from your local authority. This is different from the needs assessment that the autistic person may have had. A carer’s assessment looks at the support you need as a carer, and how to fund it.
Following your carer’s assessment, you may be eligible for Direct Payments. These payments will be made directly to you, so that you have a choice about how to use them. You may want to use them to pay for a cleaner, respite care, to hire a personal assistant, or anything else that can support you as a carer of an autistic person.
In addition, if they haven’t already, the autistic person could have a needs assessment. This may provide funding that could be used to pay for respite care.
Support for carers of autistic children
If you have an autistic child, there may be other routes to access autism help. For example, their school or nursery may be able to help signpost you to local services.
You may also be able to access some services directly through your child’s school. They may run special before or after school clubs, or offer support groups for autism carers.
Long-term care and autism help
You may need something more than the short-term solution of respite care. Depending on your situation and the preferences of the person you support, you may like to consider home care, supported living, or residential care.
If the person you support has had a needs assessment, they may be able to access funding to pay for care.
Autism help: home care
You could use a care agency or hire a personal assistant (PA) to provide autism help at home. If you hire a PA, you’ll have more control over the person who provides support and the hours worked, although you’ll also be responsible for payroll and insurance.
Autism help: supported living
In a supported living service, the autistic person lives in a housing scheme and can receive care if needed, but also has a certain amount of independence. Most supported living schemes give people the chance to have their own home, sometimes shared with others with similar support needs.
Support workers may visit regularly, but they aren’t usually on site at all times.
Autism help: residential care
If the person you support needs a lot of care, residential care may be the answer. In residential care, the autistic person would live in a care or nursing home, and have access to on-site staff.
Support for professional autism carers
If you’re a professional autism carer, you may still need support. Many of the resources offering support for carers of autistic people focus on family carers. However, there are still options if you’re a professional autism carer.
Tips for professional care workers:
- Take breaks when you’re working – you’re entitled to regular breaks, even if you provide live-in care, so make sure you use them.
- Take all of your annual leave each year, even if you’re not going on holiday.
- Make sure that you eat healthily and get enough sleep.
- If you provide live-in care and you’re often woken in the night, talk to your client or their family about hiring a night carer as well.
- Talk to your GP if you’re feeling persistently anxious or low.
If you’re employed as a carer for an autistic individual, make sure you’re protecting the interest of your business will self-employed carers insurance.
Click the link below for more information and to get a quote for the right cover for you.
