getting a diagnoses
Every child is different, with so many types of special/additional needs and disabilities, we hope this basic information guide will help you find the relevant support for your child.
Please use the sub-drop down box for some on the most common specific needs.
There are local organisations who support with special needs and disabilities -
please click here
There are national organisations who support with special needs and disabilities - please click here
If you need help understanding some of the 'terms' used -
please click here
Contact have produced a guide for living without a diagnosis - download below:
Contact have produced a general guide on what you can expect when you have concerns about your child who may have a special/additional need or disability.
(See below - click picture to download)
This page of our website helps you right from the start when you realise your child may have a learning difficulty or health problem. Getting a diagnosis may take some time and you will need information and support along the way.
If your child has an undiagnosed condition you may worry that you might not be able to get any help or support - but this is not the case. Every child is different, and your child is entitled to get support for their individual needs, regardless of whether they have a diagnosis.
These links from Contact is for parents who are going through the process of trying to get a diagnosis for their child. It contains details on:
Why is it sometimes hard to get a diagnosis?
There are a number of reasons why getting a diagnosis can be difficult:
- there are more than 6,000 known rare conditions - doctors rarely see children with these conditions, making it harder to recognise them when they do
- different conditions can have similar features or symptoms
- some children have a number of features or symptoms that do not fit into one specific condition
- there are significant variations in the way that a condition can affect different children
- certain things that indicate a condition may not appear until your child is older - this may result in a late diagnosis or even a change in diagnosis.
Who can help with diagnosis?
- If your child is under five years of age, a health visitor may be a vital source of support. Many parents discuss their concerns about their child's development with their health visitor first.
- Often, the first point of contact for parents with concerns about their child will be their general practitioner (GP).
- Your GP may refer your child to a paediatrician - who specialises in conditions affecting children.
- They, in turn, may contact a specialist (also called consultant), who may look at a particular area of the body or a particular group of conditions.
- speech and language therapists (SALTs) help children learn to communicate, either through speech or other methods. They can also help if there are problems with eating, drinking and swallowing
- physiotherapists help in the management and development of movement skills - there are a number of ways in which children can be helped, including exercises to strengthen weak muscles, and games to improve coordination and motor skills
- occupational therapists (OTs) look at hand-eye coordination, perception and manipulative skills. They can advise and provide suitable aids to help with everyday activities.
What can parents do?
- You may suspect a particular type of condition, so you could ask for a referral to a specialist service (for example for metabolic disorders). If you want to do this, it is helpful to take a list of all the ways your child is affected along to the appointment to explain why the referral is needed.
- If you think your child may benefit from a particular assessment or testing then discuss this with your medical professional. If you find reliable evidence to support this bring a copy a long to your appointment to show the doctor.
- If it is suspected that the cause of your child's difficulties is genetic, then your GP or paediatrician may refer to a genetics service, which is based at a regional genetics centre.
What to do if you are not happy
If you feel strongly that all ways of getting a diagnosis have not been explored, you may be able to get a second opinion.
- You can go back to your GP and ask them to refer you to a different specialist.
- Try to avoid being confrontational, but be firm.
- You can take along the list of things your child finds difficult and also explain the reason you are asking for the referral giving examples if possible.
- If you would like a second opinion after receiving advice from your GP, you can ask them to refer you to another GP at the same, or a different practice.