Reactions to a diagnosis of autism

All parents and family members react differently to a diagnosis of autism. For some parents, a diagnosis of autism comes as a shock, as they hear for the first time that their child is developing differently to others and is likely to always be different in some ways. For other parents, a diagnosis comes as a relief and an explanation after many years of doubt, questioning, self-blame and guilt regarding their child’s differences and difficulties. For many others, there is sadness and worry as their fears are confirmed. It is important to note that some parents continue to feel anger and frustration along with feelings of sadness as they understand the long term impact of autism on their child and family.  For many parents, a diagnosis provides access to services along with a better understanding of their child’s behaviour and allows them to start an ‘active coping’ process that helps them focus on how to help their child and family.

Different family members will also adapt to a diagnosis of autism in different ways. Mothers and fathers often respond differently to each other. Sometimes, one parent will be focused on gaining as much information as possible, while the other parent may not want to know. In other families, one parent may have read more information about autism prior to the assessment and may find the other parent less able to understand why their child has been diagnosed. In some families, one parent may want to join support groups, share their child’s diagnosis and connect with others while the other parent wishes to keep the diagnosis a secret from friends and family. There are no right or wrong reactions but it can take open communication and negotiation to make sure parents are able to work together for their child.

Sometimes, managing the reactions and emotions of extended family members can be challenging. Grandparents, aunts, uncles and friends can be a great source of support in some families but will often experience their own grief process and learning curve as they learn about autism. Supporting grandparents and other family members to learn about autism and how they can support the child in their family can be helpful.

The following factsheet provides information and links for grandparents of children on the autism spectrum: Grandparent's information sheet

Siblings are also important members of the family to consider. The needs of other children in the family will depend on their age and level of understanding but there are many resources available.

This link provides some links to sibling organisations and a webinar for parents.

Families from Aboriginal and Torres Strait Islander communities

Autism is just beginning to be better understood and recognised in Aboriginal and Torres Strait Islander communities. To better support families and their communities, there are a number of animated stories, guides and information sheets that have been developed to promote understanding of what autism is, how it impacts on families and how children on the autism spectrum can be supported:

Resources for Aboriginal and Torres Strait Islander Peoples

Families from diverse cultures and languages

When families are from diverse cultures, a diagnosis of autism can be even more difficult because of the challenges in accessing information in the right language and, in some cases, the challenges of explaining autism to community members who may have very different ideas and understanding about disability and difference. The following link provides some translated information about autism, as well as quick guides on a range of topics:

Resources for culturally and linguistically diverse communities

Grief and sadness

When the term ‘grief’ is mentioned, people often think about the emotions that surround the death of a loved one. However, grief reactions can occur whenever people experience other types of loss, such as the breakdown of a relationship. It is also very common for parents to experience grief when their child is diagnosed with a disability such as autism. In this case, parents may grieve the loss of the ‘hoped for’ child.

It is important to note that the feelings of sadness lessen with time but that grief can be triggered at different times. For families of children with disabilities, these triggers are often related to developmental milestones, such as starting school, when parents can revisit the same sadness and grief related feelings that occurred when their child was first diagnosed. However, many parents are resilient and rightly hold high hopes for their child. Parents who periodically experience grief in the form of anger or sadness in relation to their child’s diagnosis should not be seen as ‘in denial’ or yet to ‘accept’ the diagnosis.  Periodic grief is a normal reaction to a difficult situation.

For more information on this topic, see the Positive Partnerships factsheet:

Looking after yourself

Parenting a child on the autism spectrum can be challenging and stressful and parents are likely to feel periods of sadness. Fortunately research suggests that there are a number of things that are likely to be helpful for many parents:

  • ‘Positive coping’ has been found to be associated with lower stress and better coping for parents of children on the autism spectrum. Positive coping strategies include:
    • seeking information about autism and your child
    • pursuing respite opportunities where appropriate
    • maintaining your own interests
  • Talking with someone – this might be with a trusted friend or family member or through a support group.
  • Developing social supports – parents with social supports report better interactions and lower stress. Social supports might come from spouses, extended family and friends as well as support groups and other networks, including online communities.
  • Community supports such as respite, recreation activities and education programs can help families with feelings of grief and stress.

 Experienced parents have shared other ways to look after yourself during difficult times. Some of their suggestions include:

  • Listen to an old favorite song that hasn’t been in your music rotation for months, maybe years.
  • Grab a coffee to go and sit on the grass in the nearest park.
  • Wake up early enough to watch the sunrise and enjoy the tranquility of that time of day.
  • Sit outside with a good cup of tea and watch the trees, garden or the world go by.
  • Eat a random platter of your favorite snacks for dinner – olives, brie and caramel popcorn…
  • Change your phone screensaver to something that makes you smile.
  • Sign up to a free online course – there are thousands available.
  • Melt down a chocolate block and add milk to create the best hot chocolate.
  • Smile at the next person walking past you on the street, or everyone you see for a whole day.