Support for autism carers

Support for autism carers

There is support for autism carers in the United Kingdom. You might have recently found out that you will be supporting someone with an Autistic Spectrum Condition, or you might have been supporting someone for many years. Whichever the case, there will be times when you feel overwhelmed, when you do not know which way to turn, when you feel that all you need is a little break. It is important to prepare yourself for those moments by making sure you have a good support system and you know where to go to for helpful information and a listening ear.

In developing your support system it might be helpful to think of the following areas of support:

    • Financial
    • Professional
    • Informational
    • Emotional
    • Respite
    • Therapeutic


    Support for autism carers 1Financial

    As a carer you might be entitled to a carer’s allowance. Carer’s allowance is a taxable benefit and is paid if a carer fulfils certain criteria, such as being over 16 years of age and looking after someone for over 35 hours per week. It is definitely worth checking if you are eligible for this financial benefit. You can find out more in the Carers UK factsheet.

    Support for autism carers 2


    At various times you might need to consult a professional about a specific issue which is concerning you regarding the person you are supporting. The individual might be displaying behaviours you are unused to or which you would like to understand better or you might like to help them develop skills which might help them in their day-to-day living. You might need to consult a GP, a psychologist, or a therapist. At these times, it is important to try to access this support. The professional might be able to give you helpful information and tools which could help the individual and you as their carer.


    Whether you are needing to find out more about autism or wishing to know more around a certain aspect of the condition, it helps to have an idea of where to go for that information. You might wish to read articles on the subject, meet with others in your situation by going to a local support group, or have an online chat in a discussion forum.

    It is important to remember that the chances are someone else has come across the same challenges and you might find it helpful to know how they managed the situation.

  • Support for autism carers 3


    There will be times when you feel unduly stressed. Remember, you need to look after yourself in order to be able to look after others. You might wish to visit a counsellor or find a stress management or mindfulness course. For you, it might be yoga or relaxation classes. If you cannot get to a class or a course, you might be able to find helpful DVDs or ideas from some relaxation or mindfulness internet sites. Paying attention to your stress levels might help you through some of the difficult times.

    Respite and holidays

    At times you might feel that stress management or relaxation techniques are not enough for you and that you need a break to recharge or to pay attention to other people or duties you might be neglecting, because of the extent of your support. There are several respite choices or you might wish to take the individual in your care on holiday or even find someone who would take them on holiday for you.


    The Care Act 2014 aims to support carers. The Act, which came into effect in April 2015 ensures that you, the carer, have the right to have your own needs assessed which will identify the support you need. You can be assessed regardless of the amount of hours you spend supporting the individual, your financial means or the level of need for support.

    To obtain an assessment you need to contact your local authority’s adult services and ask for a carer’s assessment. You should receive a list of the questions you will be asked in advance of the assessment so that you have time to prepare your answers and formulate any questions you wish to ask. You will be asked:

        • How being a carer impacts on your health and wellbeing
        • Your feelings and choices about caring
        • Your work, study, training and leisure
        • Your wishes, choices and the outcomes you wish to achieve
        • Your relationships, social activities and goals
        • Your housing situation
        • How you plan for emergencies

    Although there are national rules, the local council will decide whether you have what the law calls “eligible needs”. You will be considered eligible if it is decided that your caring role impacts significantly on your wellbeing providing the care you provide is necessary.

    Once your needs have been identified, a care plan is put in place and you will be offered the support services identified. If you are above the financial threshold you may have to pay for these services. If you are below the financial threshold you can request a direct payment so that you can organise the services yourself.

    For more information about the Care Act 2014 or a Q & A fact sheet go to:

  • Thanks to Living Autism LTD and Manar Matusiak for their kind permission to use this article.


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