Autism diagnosis advice from parents and carers

We know that the process of getting a diagnosis for your child can be long and overwhelming. It is difficult to know what to expect. Here are some of the things other parents and carers have found helpful.

Keep a diary 

Keep a diary of your experiences and concerns about your child. This can help when you are talking to professionals or giving information for a referral.

Don't compare your child to someone else's

Your child's development and progress will be different to another child's.

Neurodevelopmental need is a spectrum. There are some things that we look for when making a diagnosis. But how these things look in your child will be different to how they show up in someone else.

Talk to others and try not to become isolated

 It's easy to feel alone when you find out your child has a neurodevelopmental need. This can be especially true if your child's behaviour is challenging. But other parents and carers have been through this too. 

In Gateshead, there are groups run by parents of children with a neurodevelopmental disorder. They will be happy to chat with you about their experiences. They can share things that they found helpful.

Take notes

 When you go to appointments, you often get lots of information at once. Sometimes this can be too much. If you can, take a pen and paper with you. Write down anything that seems important or helpful. This will help you remember it later.

Ask questions

You will have lots of questions throughout this journey. It is never the wrong time to ask them, or to ask for another explanation if you don't understand the answer.

You will get a co-ordinator. They can answer your questions about the process and what to expect.

If you need more practical help, the services in section 3 can help. Even if the person you speak to doesn't know the answer, they will know someone who will.

Go on courses

Lots of organisations offer free training for parents and carers. These courses can help you to meet your child's needs. Some are about a particular diagnosis, such as autism or ADHD. Others are about how to deal with things like sleeping or going to the toilet.

Training can't give you all the answers. But it can still give you lots of information and tips on how to support your child.

You do not need a diagnosis to get the support you and your child need

More people than ever have neurodevelopmental needs. This means people have to wait longer for a diagnosis. But help is available, and you do not need a diagnosis to use many of these services.