A quick guide to what to expect, if you seek a diagnosis for your child.
Starting this part of the journey
Diagnosis is when a name is given to your child’s special needs. Many children are diagnosed when they are little, but diagnosis can happen at any age. It is a good idea to get information and help as early as you can. If you think your child might have special needs, you can start by talking to the services listed on the page about where to start.
- Find out about other families’ experiences of getting a diagnosis and help for their child.
Seeing a paediatrician
You might be advised to see a paediatrician: a specialist doctor for children and young people. You usually need to get a ‘referral’ (a letter) from a GP before you see the paediatrician.
The paediatrician is the main person who will take you through the journey of diagnosis. For some children the diagnosis process is quick. For others it can take a few months, or longer.
Assessment and testing
The paediatrician will talk with you and your child, and then do an ‘assessment’ of your child’s special needs. The paediatrician will refer your child to see some other specialists, such as speech therapists, psychologists, occupational therapists or other medical services, for example to test your child’s hearing or sight.
Each specialist will ask you and your child questions, maybe as part of a test. Different tests are used to find out about things like your child’s understanding level, their communication, their behaviour, and how their brain and body work together. Other specialists will just watch how your child plays and communicates. Sometimes they might visit your child at kindergarten, childcare or school to do this.
Getting the diagnosis
The information from these visits and tests is sent to the paediatrician, who uses it to make a diagnosis for your child. At an appointment, they will explain the diagnosis, and talk about services that can help your child and family.
Ask the paediatrician as many questions as you can, to make sure you understand what they are saying. Ask them where else to go for help, and for any written information that might help you with the next steps.
Many parent and carers think of more questions to ask after the appointment. You might be able to ring the paediatrician up, or get another appointment. You could take someone with you to appointments, like a friend or support person. The ‘disability world’ is often a brand new one for parents and carers. It can be good to get help, for example from a support person who knows about that world.
It can be hard going
Many parents and carers find this part of the journey hard going. There’s a lot to take in. And it might be scary or emotional to think about your child having special needs, and maybe needing extra help to do everyday things. Sometimes the testing might be pretty hard going. In finding out about your child’s special needs, the tests mainly focus on what your child can’t do. This may feel a bit negative or upsetting. But hopefully, the results from these tests will help your child to get the services they need.
Sometimes you might disagree with the diagnosis, or with the paediatrician saying that there is no diagnosis for your child’s special needs. If this happens, you can ask for a second opinion. Talk to a support person.
Get support for this journey
Almost all parents and carers find that they need support for themselves on this journey. You can get information and help from a support person. They might even be able to even come with you to appointments.
It can be helpful to speak to other parents and carers who have children with special needs. They often understand what you are going through. You might know others in community you can talk to. You can also find families through playgroups, parenting groups and support groups, or you can ring up ACD’s support team.
- Find out contacts for groups through your health service, VACCA or Carers Victoria.
- Find out contacts for many services in Through the Maze, our general guide for all families to the disability support system. There is also more information for rural families in our Regional Quick Guides.