Where do I find information about my child’s condition?

“Your child has autism.” Hearing these four words for the first time can come as a shock – particularly if your child is diagnosed with a condition that you don’t know much about. But, looking on the upside, a diagnosis means that you can begin to arm yourself with information about the condition.

Where do you start? And, once you’ve started, how do you know where to stop? There are so many websites, social media forums and articles out there – some offering credible, useful information; others pinning their hopes on unproven remedies. You could literally lose days and weeks down the internet rabbit warren!

Here are some broad guidelines to help narrow down your search.

Start with the experts

When your child is diagnosed with a condition, your GP or paediatrician should be able to put you in touch with a local or state-based organisation that has specialised support and services for your child.

The person you speak to within that organisation should then be able to provide you with all sorts of resources – like reading materials, websites, games and books. You can check the information sources they provide so that you are confident they are up-to-date and draw on the latest research.

Do your own research

Being the parent of a child with a disability can feel isolating and overwhelming, particularly if your child’s condition is uncommon. The beauty of the internet is that it’s easy to connect with parents who are in the same boat as you. That’s why many parents like to join Facebook groups or other forums that exist purely for families who are on similar journeys.

In these groups, you can share new research or information, talk to each other about day-to-day challenges, and share the ‘milestone’ wins that only other parents in your shoes will understand. They generally have guidelines about the types of things you’re allowed to post; and are moderated to create a safe space for sharing information.

As well as joining forums, you might be interested to see what research is being done overseas. Just remember that some treatments being used overseas may not be available in Australia.

Read Vanessa and Dean’s story about the importance of building supportive relationships.

Avoid ‘quack’ sites

There is a lot of misinformation floating around on the internet. Unfortunately, there are hundreds of websites and fake news articles out there that promote remedies or cures for all manner of conditions. The people that create these sites are not medical experts; the products they are trying to sell you are not scientifically proven. They just want your money.

While it can be very tempting to believe in the miracle cures promised on such websites, it’s best to avoid them. Some can even be dangerous.

If you find something that you think might help your child, your best bet is to consult your GP or paediatrician. They should be able to explain the pros and cons of any treatment.