your life your choice!

You’re interested in...

Diagnosis process and support

 Quick Summary

The disability diagnosis process can often be confusing. You may have had concerns about your child and discussed these with a doctor or health nurse. Before your child is assessed, you will most likely find yourself working with a doctor, who will then refer you to a paediatrician. This is the beginning of the diagnosis stage, and you could work with a range of professionals. This can be a time of great emotional distress, so make sure that you seek support from family and friends. There are also services and groups that can offer support and guidance. Look for a disability family service with a helpful, positive attitude and a family centred approach, and expect to be treated with respect and understanding.

You can choose to:

  

There a several ways you may find yourself in the pre- assessment stage of having your child assessed for a disability:

– Some parents have concerns about their child and take these concerns to their GP;

– A GP or health nurse may have concerns that they have shared with you and suggest some assessments;

– Concerns may have been expressed by day-care or other services working with your child;

– The school may have concerns and request to do assessments.

The first step is usually a visit to your GP. After the consultations with your GP, you will usually be given a referral to a paediatrician for more specific assessments that will lead to a diagnosis.

If the request is coming through the Education Department, they will organize the assessments for you.

Diagnosis usually involves many specialists and professionals testing and assessing your child, this is called a multidisciplinary assessment. It can seem daunting, but having all these professionals gives your child the best chance of an accurate diagnosis. It also helps to develop the best treatment plan.

A multidisciplinary team usually includes a paediatrician. Other professionals that may be involved in the process are speech pathologists, occupational therapists, psychologists, and a range of others depending on the information they are gathering.

This can be a stressful time for parents, there is anticipation and worry, as well as the many appointments and assessments you may be required to attend.

In this short video, child disability experts talk about what to do if you’re concerned about your child’s development. Parents of children with disability talk about their experience of getting a diagnosis, following their instinct and getting second opinions. It is a useful place to start to understand the process.

 

 

 

 

Some conditions are evident at birth or soon after. Others can occur as a result of an accident or sudden onset of illness. For many families, the identification of a child’s disability is gradual and unfolds over a period of time. For some children, a clear diagnosis of a specific condition or disability (or multiple disabilities) and diagnostic process is more straightforward.

Sometimes the diagnosis of a specific condition may not be possible or may be reliant on further tests and observations in future years. Assessment and diagnosis may take a long time.

For some parents getting a diagnosis can be a struggle, and experts themselves can sometimes find it difficult to make an accurate diagnosis. If you are in this situation, it is important that you get support as you continue to seek a diagnosis, and feel comfortable in pursuing more than one opinion. Remember that diagnosis is not always required in order to gain assistance and support for your child.

Each child and diagnosis is individual, however, the process is a common experience for all parents.

This is a time of great emotional distress so make sure that you utilise family and friends and access services and supports with a ‘can do’ attitude and a family centred approach, and expect to be treated with respect and understanding.

The assessment process can be costly if you choose to use private specialists, and many doctors are moving away from bulk billing. Referral to clinics at the major hospitals usually involves long waiting times. Navigating through these systems and the language used in assessment can be made easier by connecting with others with lived experience, such as parents and carer peers. Peer organisations can also offer vital tips and tricks, resources, information and assistance.

It is normal to have mixed feelings when your child is diagnosed with a disability. You may feel sadness, grief, relief or apprehension about the future. There is no right or wrong way to feel. Take one day at a time and try to enjoy your child for who they are, rather than focussing on their disability. Taking time out for yourself, keeping yourself healthy and acknowledging your emotions are all useful in the early stages while you are getting used to life after diagnosis.

GET STARTED

The first step is usually with your GP, who hopefully you will already have an established relationship with. Having a great connection with your GP is important, so check out our Finding Your Way chapter Your doctor and gateway to health services. Your GP will do some initial assessments and refer you to a paediatrician. The GP may recommend a specific paediatrician however you can make the decision to choose your own. To find paediatricians in your area, use the HealthShare Find a Paediatrician page.

Check out these terrific articles and videos about getting your child’s diagnosis on the Raising Children Network website.

If the Education Department is doing the assessments, it’s important you have good communication with your child’s school. You will need to give your written consent for any needed assessments. See the Department of Education’s Effective Consultation Fact Sheet for more about communicating with your child’s school, what you can expect and who to ask for help if you don’t understand.

ACTION STEPS

Here you can find a simple list of the best actions to take if you are interested in this topic:

1 .

If you are concerned about your child’s development, trust your instinct and consult your GP, who can then refer you to a paediatrician or other specialist for a diagnosis if required.

2 .

Remember, you can have a say in the choice of a paediatrician. It’s important to have someone you feel comfortable with and can communicate effectively with.

3 .

If you are on a waitlist to see a specialist, call regularly to see how are you are progressing, and ask to be put on a cancellation list if they have one.

4 .

It is a good idea to get a second opinion from another specialist if you want to check the information you have been given or feel that things have been missed during the diagnostic process.

5 .

Gather your network of support around you once you have a diagnosis, and remember it is normal to feel a range of emotions at this time, including grief.

6 .

Connect with other parents in similar situations. Consider joining your local MyTime group, check local community directories for parent and peer support groups or contact disability organisations to find out about groups in your area.

7 .

Gather information about your child’s diagnosis. There are many disability specific organisations that can provide information about your child’s particular condition. Hospital, government and university websites are also reliable sources of information. Remember that not everything you read online will be accurate.