Fact Sheet - Grief & stress

Adult hands holding in support

Grief and stress - extended version

This fact sheet aims to explain the different reactions and emotions that parents experience when their child is diagnosed with autism.

Reactions to diagnosis

All parents react differently when their child is diagnosed on the autism spectrum. For some parents it’s a shock to hear their child is developing differently. For others, who felt there was something different about their child, it can be a relief. Sometimes parents feel that they can stop feeling guilty and blaming themselves. Many parents experience feelings of worry and sadness.

The time after diagnosis can be hard work. Autism impacts on family life and parents need to try to find services and support. Sometimes the diagnosis helps families to access services. For some families it can mean a better understanding of their child.

Grief and loss

Grief is a feeling we experience when we lose someone close to us. We can also feel grief when we experience other types of loss, such as the breakdown of a relationship. Parents of a child on the spectrum or other disabilities can grieve the loss of the child they thought they would have.

Parents can feel grief at different times, such as when their child starts school. They might also feel grief when they see other siblings and family members attend birthday parties or achieve different milestone such as leaving home. It is important to remember that in between these times, families can function normally and be happy.

Times of grief are a very normal reaction to a difficult situation. Parents of children with a disability who feel anger and sadness should NOT be seen as ‘in denial’ or not accepting the diagnosis. Many parents are resilient and rightly continue to hold high hopes for their child. The idea of ‘accepting’ a diagnosis in order to move on with their lives is no longer seen as the only way to parent a child with a disability.

Stress

It is well recorded that parents of children on the spectrum experience more stress than parents of children without disabilities. They also have more stress than parents of children with disabilities other than autism. This greater stress level can be due to:

  • greater care giving challenges,
  • child’s behaviour,
  • feelings of isolation,
  • trying to figure out the maze of services and support.

What can help?

Research has found that positive coping (rather than avoidance or denial) can be helpful. Positive coping strategies include:

  • seeking information about autism and your child,
  • pursuing respite opportunities where appropriate,
  • maintaining your own interests.

Other helpful things can include:

  • Talking with someone – this might be with a trusted friend or family member or through a support group.
  • Making social connections – including connecting with partners, family and friends, support groups or other networks, such as online communities.
  • Community supports such as respite, recreation activities and education programs can help families with feelings of grief and stress.

Summary

  • All parents react differently to diagnosis.
  • Many parents will experience feelings of grief from time to time.
  • It is normal to feel sadness, anger and frustration, as well as normal functioning and happiness.
  • It helps to have support from groups, family, friends and support networks.
  • Community connections are important.

(Reviewed in November 2016)