Raising a child or caring for an autistic adult

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How regular respite helps maintain good mental health.

Although caring or parenting someone with autism is at times a joyful experience, it is also challenging both physically and mentally.  Sleep deprivation and social isolation are common factors amongst parents and carers, it’s natural to put your child’s care over your own self-care, friends, hobbies, relaxation, sleep and time to reflect, mental illness particularly depression and anxiety become a constant daily battle. Often this has a direct impact on the quality of care the person with autism is getting, long term impact can be devastating not only for the parent or carer but also for the individual with autism.

It can be easy to forget that looking after yourself means that you can look after your loved one for a longer period and prevent carer burnout. This can mean taking weekly or daily breaks to recover and recharge, be it time spent with friends, attending an appointment, engaging in a hobby or simply doing nothing for a couple of hours.

Respite care is defined as a short break for the primary caregiver, it can be arranged for just an hour, a long day or overnight. Care can be provided in your own home, out in the community or in a setting.

For autistic people, respite care is an opportunity to practise independent living skills and to develop working relationships. Regular consistent contact with experienced staff who have a good understanding of Autism Spectrum Disorder and an understanding of the individual they are working with can be a useful tool to help develop communication. Returning home to the primary carer who is also functioning at their optimum level both physically and mentally generally has a positive impact on the overall quality of life.

Accessing respite often involves your local authority, a social worker will conduct an assessment allocate you the required hours and then you can purchase the respite by contact local care providers.  Parents and carers should have a carer’s assessment and the individual with autism should have a needs assessment both are required if your local council is to pay for the respite, this would in the form of direct payments. These payments can be managed by yourself or by a service that your social worker would help identify. You can use direct payments to purchase flexible hours.

Although this seems like a straight forward process often the anxiety of trusting someone else to look after the most precious person in your life is a big issue, knowing that the member of staff allocated is fully trained in autism and is equipped with not only theory but the practical skills to care for your loved one whilst your recover and recharge mentally and physically is often the most reassuring aspect which allows parents to fully relax whilst their child or young person is enjoying their independence and experiencing meaningful engagement and activities.

For further information visit NHS Carers’ breaks and respite care

About Nazreen Bibi
About Nazreen Bibi

As a CEO, a parent carer, activist/campaigner and a registered mental health nurse with many years of experience working with autistic children and adults, I am passionate and committed to developing a service which is evidence based and reflects the needs of our local population in Peterborough

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