Parent decision-making: autism, disability

Making decisions for children and teenagers with disability, autism or other additional needs

Being a parent involves making important decisions to help your child thrive.

If you have a child with disability, autistic child or child with other additional needs, you might need to make important decisions at certain milestones – for example, when your child is first diagnosed, starts preschool or school, or gets access to the National Disability Insurance Scheme (NDIS).

At these times, it’s good to have a decision-making process. This will help you:

make informed decisions
make decisions in the best interests of your child
feel more confident about making future decisions.

Here are 4 steps to making a good decision:

Clarify your decision and options.
Gather the information you need.
Make your decision and act.
Review how things are going.

You know your child and family best, so you’re well-placed to decide what’s best for your child when they’re young. But it’s good for even young children to have a say in decisions that affect them. So try to involve your child in the process if you can. And if you have a partner or an ex-partner, try to involve them as early as possible too. It’s best for your child and easier for you if you and your partner can work as a team.

1. Clarify your decision and options

Start by describing the decision you need to make and the options you have. It might help to write a list.

Here are examples:

Which primary school should my child go to? Options include local government, Catholic, independent and special schools.
Which type of therapy will best support my child? Options include telehealth, one-on-one sessions and group therapy.
Which sports program is right for my child? Options include programs for people with disability, mainstream community sports clubs, private lessons and school sports teams.
How should my child travel to school? Options include travelling independently on the bus, being driven to school, riding their bike and getting school transport.

If your child gets NDIS funding, you’ll need to make decisions about which disability service provider or therapist to work with and how to best manage your child’s NDIS funds.

2. Gather the information you need

The next step is to gather the information you need to make an informed decision. You can do this by:

thinking about what your child and family need
talking with people you trust
looking at any evidence for different options.

Think about what your child and family need
Here are questions that can help you think about what your child and family need:

What are our family’s beliefs, values or preferences about this decision?
What are my hopes for my child’s future or goals for my child?
How will my decision help my child’s learning and development?
How might the decision affect other members of the family?
How does the decision affect our daily life and other activities and commitments?
What current or future problem will this decision solve, and what will things look like when the problem is solved?

Talk with people you trust
Talking through your ideas and getting other people’s perspectives can help with decision-making, even if you don’t agree with what other people say. It can help you:

clarify your thoughts
think about what has worked in the past
help you decide what’s important to your child’s goals
learn about other options or consider things you hadn’t thought about.

You might have people you trust in your network of family, friends or neighbours. Other parents who have made similar decisions can also help by sharing their experiences.

Professionals you trust, like teachers, paediatricians, therapists or your GP, can give you specialised knowledge to include in your decision-making.

Look at the evidence
Looking at scientific evidence about the issue can help. Scientific evidence is evidence that experts have thoroughly tested and found to be reliable.

For example, you might be deciding on therapies for your child and there’s scientific evidence to say that a particular therapy works. That therapy is likely to:

help your child’s development and wellbeing
be safe for your child
be worth your time, money and energy.

Parent advocacy and support organisations can help you find scientific evidence about issues like education, therapies or support. You could start by contacting Children and Young People with Disability Australia or your local or state-based association for children with disability.

If your child has a diagnosis, you might be able to get information and support about quality practices through disability organisations and other support groups.

You can also ask your child’s paediatrician, disability professionals or teachers about evidence-based practice and strategies.

Note that there won’t be scientific evidence about some issues – for example, whether your child is ready to walk to school by themselves. And scientific evidence won’t consider your child or your family circumstances.

The internet can be a great source of information, but not all information on the internet is reliable. Make sure you’re looking at reputable websites – for example, websites with links to universities or government.

3. Make your decision and act

Now it’s time to make your decision by assessing the information you’ve gathered.

Your decision about which option to choose might be clear. If it isn’t, start by writing down all the options you’ve got. Then make lists of pros and cons for each of your options. Use the lists to prioritise the options.

If you’re having trouble prioritising the options, these ideas might help you weigh it all up:

Sleep on it.
‘Walk and talk’ with someone who’s a good listener.
Set yourself a deadline for making the decision.

Last of all, check whether there are any barriers to getting started with the choice you’ve made, like time, money or safety. You might be able to overcome these, or you might need to add them to your list of cons and reprioritise your options.

It’s important to talk with your child about the decision and check in with their feelings. For example, ‘Mum and I have chosen Richmond Primary because it’s easier for your wheelchair and we both really liked the teacher. You can still see your friend Ahmed on the weekend even though he’s going to Central’.

4. Reflect on how things are going

It’s important to review your decision and how it has affected your child and family.

Here are things to think about:

Is your child making progress?
Can you see positive outcomes for your child and the rest of your family?
Does it feel like a good fit for your family?
Is it helping with your family’s daily life?
Are you feeling comfortable with the decision?
Do you feel more confident about making the next big decision?

When you need to change your decision

Sometimes you’ll know quickly that the option you decided on isn’t working. If you need to reconsider, go back to step 1 and review your other options.

At other times you might need to give your decision time and effort to work. Or you might need to talk with the people involved in the choice you made to let them know things aren’t going as you had hoped and work out a solution together.

It can be hard to reconsider your options once you’ve invested time and energy in your decision. And change can often be stressful. It can help to remind yourself that you made your first decision using the best information available to you at the time. Changing your mind for the benefit of your child doesn’t mean you did the wrong thing.

Making big decisions about your child can be stressful. Ways to manage stress include spending time with friends, getting some rest, doing exercise and using techniques like mindfulness. When your stress is under control and you’re feeling well, you’re better able to navigate the challenges of family life. This helps your child grow, develop and thrive.