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Early Childhood - Caring for Carers
MANAGING UNCERTAINTY
Thinking about your child’s future 
It’s natural for parents to plan for and talk about their child’s future. However, parents of children with a 
disability can often feel anxious because their child’s future seems so uncertain. They have the stress of not only 
experiencing the everyday challenges of raising a child with a disability, but also wondering what will happen 
when their child is an adult. 
Your thoughts about what comes next in your child’s life can be just as overwhelming and stressful as going 
through the diagnostic process and can negatively impact on your day-to-day living if supports and services 
are not put in place
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Important things to remember
You can’t predict what will happen in the future
It’s natural to wonder about the level of care and support your child will need throughout their life. Some 
common questions you may be asking include:
• Will my child be ok?
• Will my child go to school?
• Will my child have a job?
• Will my child get married and have a family of their own?
It’s important to remember that even for typically-developing children, we can’t predict what will happen in the future2.
One parent described how she felt regarding her child’s future by saying: 
“For me…it was the not knowing…is my child going to have an intellectual disability, is my child going to be 
able to SPEAK, is my child going to be able to attend school…at first that’s all I could think of. It just made 
me come up with a thousand different questions that no one can answer because…. we don’t KNOW yet, 
whereas now, a year and a bit later…we’re just taking one step at a time…let’s deal with today.”
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Tips for managing uncertainty 
Ask questions
Find out all you can about your options and don’t be afraid to ask questions. Gathering information is key to 
understanding your child’s diagnosis and to making decisions around what will work best for your child and family. 
Organise early intervention
Early intervention will provide your child with the best opportunity to learn and become more independent 
in the future3. Research has shown that early intervention can improve children’s skills and lead to improved 
outcomes in different areas such as communication, self-help, social and play skills, and lead to improved 
functioning later in life4-6. 
Which intervention is best for my child?
You may be wondering which intervention is best for your child as there are many different options available. 
Here is a website7 which provides some general information about what early intervention is, what interventions 
are available for children with a disability and some ideas on what to look for. 
Get involved at home
Family involvement is important for early intervention to be effective2. You and your child’s family members are 
the ones who interact most with your child every day. It is essential that your child continues practicing what 
they are learning in early intervention. 
Talk to the health professionals involved in your child’s early intervention about ideas for incorporating things 
they are working on into everyday activities (e.g., during meals, baths, when reading books, and playing 
games). This is a good way for you to support your child at home and will provide continuity and a sense of 
routine when everyone in your child’s life is on the same page. This will also give you some control in managing 
the diagnosis1 and allow you to better support your child.
Set goals for your child
While it’s natural to be thinking about what you want your child to achieve in the future, the goals you set 
should also be appropriate for your child to work towards and achieve now. Goals should be relevant to your 
child’s current strengths and challenges, and they should be specific rather than broad. For example, ‘I want 
my child to use gestures, such as waving hello to their friends’ is a more specific goal than ‘I want my child to 
interact better with other children’. 
When thinking about goals, it can also help to consider your child’s interests and strengths. As your child 
progresses you will need to revisit these goals from time to time to make sure they’re still appropriate. 
Be confident
Try not to doubt yourself during this process and don’t underestimate your ability to support your child. Your 
involvement in providing supports will lead to better outcomes2. You know your child best and you can give 
valuable information to the health professionals working with them.

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Self-Evaluation 
What am I most worried about for my child’s future? 
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What can I do now to help prepare my child for the future?
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What are some ways that I can be involved in my child’s support and services? 
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References 
1. Rabba AS, Dissanayake, CA, Barbaro, J. Parents’ experiences of an early autism diagnosis: Insights into their needs. Res 
Autism Spectr Disord. 2019; 66: 101415.
2. Rabba AS, Dissanayake, CA, Barbaro, J. The development of a family support package for parents following a child’s 
diagnosis of ASD: What do parents want? PhD [dissertation]. Melbourne: La Trobe University; 2019
3. O’Reilly B, Wicks K. Australian autism handbook: The essential resource guide to autism spectrum disorder. 2nd edition. 
New South Wales: Jane Curry Publishing; 2013. Retrieved from http://ebookcentral.proquest.com
4. Prior M, Roberts J, Rodger, S, Williams K. A review of the research to identify the most effective models of practice in 
early intervention of children with autism spectrum disorders. 2006; Australia: Australian Government Department of 
Health and Ageing.
5. Vivanti G, Paynter J, Duncan E, Fothergill H, Dissanayake C, Rogers S. Effectiveness and feasibility of the Early Start 
Denver Model implemented in a group-based community childcare setting. J Autism Dev Disord. 2014; 44: 3140-3153.
6. Howlin P. Prognosis in autism: do specialist treatments affect long-term outcomes? Eur Child Adolesc Psychiatry. 1997; 
6:55-72.
7. https://raisingchildren.net.au/disability/services-support/services/early-intervention#therapies-and-services-nav-title