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What to do if you think your child has SEND?

Having a learning disability diagnosed can be difficult, and in some cases it isn't clear what the learning disability is or why it has happened. However, your child's abilities and needs can be assessed to make sure that they get the support they need.

Learning Disability Diagnosis

Some learning disabilities are discovered at birth, while others are not diagnosed until much later. If your child is diagnosed at or around birth – for example, with Down's Syndrome – their doctors probably won't be able to tell you exactly how it will affect their development. The extent of your child's disability will become clearer as they reach the ages when they should be talking, walking or reading.

For children who are not diagnosed at birth, finding out they have a learning disability can take time; most learning disabilities are obvious by the age of five. 

Even after a diagnosis is made, it can be hard to tell how it will affect your child in the future. However, your child's current needs can be assessed to work out what kind of support will help them, and they will be referred to a paediatrician (a specialist in child health). 

Developmental Delay

The term "developmental delay" is sometimes used to describe a child's condition if they are not progressing as expected. The main issues when assessing a child for learning disability are:

  • By how much is the child delayed, and in which areas?
  • Are there areas in which the child is not delayed?
  • What explanation for any delay might lie in the child's background (such as a long stay in hospital for an unrelated condition)?
  • What underlying medical condition might explain the delay?
  • Is the delay likely to be the product of a low level of care and inadequate stimulation in the home?

Getting a Learning Disability Diagnosis

If you believe your child has an undiagnosed condition, your GP should be able to help you to get the advice you need. Though not having a diagnosis may matter to you as a parent, or your child, it is not necessary to have a diagnosis to be able to receive help. This is because:

  • Treatment, therapy or teaching should be tailored to your child's needs, not to the name of their condition.  
  • You're entitled to receive benefits such as Disability Living Allowance on the basis of the difficulties that your child has and the support they need. Entitlement does not depend on being able to name the disorder your child has.
  • Your child is entitled to have extra or different support to help them at school, if they need it. This does not depend on knowing the cause of their learning difficulties.

After Diagnosis

If your child receives a diagnosis you may feel relieved, but sometimes it can come as a shock and can take time to accept and fully understand the diagnosis. Don't be afraid to ask any questions. Find out as much as you can about your child's needs.

Talking to your child's doctors, nurses, support groups or friends and family can help, although friends and family might need their own time to digest the diagnosis. Many parents find it helpful to contact other families who have been through the same thing, as talking to other parents can be a useful source of support.

Counselling can also help, so ask your health visitor or GP for recommendations.

For more information on any of the above please follow the link to NHS Choices.

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