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
“Take the time to look after yourself, your partner and your family as a unit and you will have better outcomes for your child.”
Looking after yourself online
Going through an autism diagnosis is often a stressful time as you are just realising your child and family is “a bit” different to many families portrayed on social media and online. Many families find that life is easier if they spend less time online at this stage. Social media sites are littered with images of fake perfection which can be painful to see. Even things that might not normally upset you may cause distress.
Then there are many people who will happily voice strong opinions and give advice online, and this may turn to abuse if you disagree with them. There are many strident voices claiming they and they alone have the answers to autism. All of these are worth avoiding for the sake of your mental health.
There are supportive spaces on social media too, of course. Some groups are well curated and very caring. However, beware making comparisons between children, each of our family members is unique and each family is in a very different situation. There are positive places online where you can find good advice and support, however there are also many groups with a lot of ranting and venting and these can be very wearing.
There are literally thousands of websites pouring out advice and happy to take your money from you. Most of them are full of pseudoscience and will not help at all. Remember that your privacy and security are important and that it is best not to give out too much information.
It really is a good thing to switch off the computer and find your support in real life as much as you can. Being careful with your online connections will cause less stress.