Updated: Oct 5, 2019
By Poh Gan, Educational & Developmental Psychologist
It’s never easy to get the news “Your child has Autism.” There can be mixed emotions for parents after going through a long and thorough assessment process. Some parents have told me they felt relieved. It meant that some of the difficulties their child was experiencing could be explained by the diagnosis. Other parents experienced sadness, a deep sense of grief and loss over the “hoped for child” and worry about their child’s future. Others might experience guilt, anger or resentment. Some parents might not want to know much initially. It’s important to know that everyone in the family responds and copes differently. They are all okay responses.
I’m privileged to have worked alongside parents in this journey of support for their child with ASD. I’m amazed by their will power, resilience and immense love for their children. Here are some of the things many parents have told me helped them when they first learned of their child’s diagnosis:
Get informed and get started
Learn about ASD and evidence-based interventions to make an informed choice about your child’s treatment and support options. Understand how your child’s brain thinks and functions differently. Consider not only their difficulties but also their strengths. Try to think about your child’s perspective and needs. Also think about how different treatment options suit your family’s unique needs. Families usually feel better when they are actively learning and taking steps to start intervention for their children.
Take care of yourself, acknowledge the emotions, don’t sweep them away
While most parents might understandably put their child’s needs first, you can’t look after others until you’ve looked after yourself - you can’t pour from an empty cup. Think of it as a ‘marathon’ rather than a sprint. Pace yourself. Allow yourself to experience the various mixed emotions and grief can come with the diagnosis. The feelings of grief and loss may not go away and they may come in waves from time to time. Parents who accept their emotions as they are and learn to be compassionate towards themselves tend to cope better. Some parents say their children ‘bounce off their emotions’. When they are less stressed, they are better able to meet their child’s emotional needs.
Ask for help and support
It’s okay to get help. If respite options are available for you, consider taking them. Consider joining a parent support group or online community (Facebook has some great groups!) to talk to someone with similar experience. Find your cheer squad. Some parents share that they gain new and meaningful friendships with people who really understand them and their family along this journey.
Remember … you know your child best
Build positive partnerships with school and therapists. While you might start working with various therapists and school staff, you still know your child best as you live with them 24/7. You bring to the table your expertise about your child. Therapists may share their experience and knowledge about Autism and how things may work for your child. Think of it as a partnership, each contributing equally to the process. Don’t let therapists tell you otherwise. It’s okay to let them know that you are not ready to tackle certain goals yet. Family comes first.
See your child, not your child’s diagnosis
The diagnosis may explain some of your child’s behaviour but it doesn’t define who he or she is. Your child’s character, personality and quirkiness make your child unique. Your child is so much more than the diagnosis. Be curious and open about your child’s behaviour. It’s often a form of communication that the environment is not meeting your child’s needs. Ask, “What’s up?”; rather than asking your child to “Smarten up”. Meet them where they are at. Be with them and help them to regulate their feelings. Celebrate and find moments of joy with your child.
Celebrate the small wins
Often we get caught up with finding weaknesses, next treatment goals, ways to support a child to improve, that we are not taking time to celebrate when they are making progress and having those small wins. Give praise and acknowledgement generously to your child (and yourself!).
Maintain your relationship and support each other
Sometimes adjusting to the new diagnosis, can be all time- and effort-consuming when you are learning about different funding options, support organisations, and intervention strategies. It can be overwhelming and a shock to your relationship. Be mindful that your partner may be coping differently. Check in with him or her regularly. Find time and opportunities to reconnect and be there to support each other. This will help both of you to work as a team constructively to navigate the ASD journey.
If you or your child need additional support or therapy after an ASD diagnosis, feel free to contact our office on 9456 0411 or firstname.lastname@example.org.