Looking after yourself
Self-care for autism parents and carers
Most of us are familiar with the seven stages of grief: shock or disbelief, denial, bargaining, guilt, anger, depression, and acceptance/hope.
Less of us may be aware that parents go through a similar grieving process when their child is diagnosed with autism. We are grieving for the child we ‘thought’ we had — our child with autism may be just as much loved, but their future will be different to the one we had envisioned for them.
Autism is also a life-long condition; as parents we’re in it for the long haul. Parenting is stressful at the best of times, parenting a child with additional needs doubly so. Without the right help and support, parents risk burnout, which negatively affects everyone.
With time, many of our children will go on to thrive and embrace their identity as an autistic person; others may remain significantly disabled. Regardless, as parents we are our child’s most important asset and therefore it’s vitally important we look after ourselves.
Here are some self-care tips from other autism parents and health professionals:
- Look after your physical and emotional health — remember, you’re an athlete training for a marathon. Whenever possible try get enough sleep; regular exercise, meditation and good nutrition also help.
- Find your ‘tribe’ — sometimes it may feel like you’re the only one going through this. Locate an online or in-person support group for ASD and connect with others who understand the challenges. Some of your longest-lasting friendships will probably come this way. We have compiled an extensive list of online forums, and you can refer to your state autism association for information on in-person support groups in your area. There are also government-funded MyTime supported playgroups around Australia for parents of children with a disability.
- Accepting limits to what you can do — you are not the only person who can help your child. Ask for and accept help whenever you can.
- Spend time away from children — sometimes the last thing you may want to talk about or think about is autism. Meet up with friends who have no connection to your child or set aside time for activities that give you pleasure, such as reading, running, or craft. For parents with more severely affected children, look into respite care options. You are eligible for respite care through your child’s NDIS plan, although it will be described in different terms such as ‘short-term accommodation and assistance.’
- Nurture your other important relationships — autism is much easier to handle if you’re playing in a united team. Arrange a ‘date’ with your partner while your child is in therapy and schedule time alone with any other children you have.
If you feel you’re still struggling emotionally or your marriage is under stress, it may help to see a psychologist or counsellor. Talk to your GP about getting a mental health care plan to access Medicare-funded psychologist sessions. You may also be eligible for counselling and carer support through your child’s NDIS plan.
Parents, especially mothers, usually arrive at counselling exhausted and desperate. Once they can grasp the concept and importance of self-care they often start to see a difference in family life, relatively quickly. And, importantly, they start to minimise some of the guilt they feel for taking time away from their child. In order to survive autism, this is a skill we MUST learn and practise.
Justine Watson for The Complete Autism Handbook
Helpful links and resources
Family stress and autism spectrum disorder — Raising Children Network
Caring for me – Carer Gateway
Accessing respite through the NDIS — Carers Australia, 2017
Mental health care plan — HealthDirect
Family support – what the NDIS will fund — National Disability Insurance Scheme