Learning disabilities: coping with a diagnosis

Having a learning disability diagnosed can be difficult, and in some cases it isn't clear what the learning disability is or why it happened.

However, your child's abilities and needs can be assessed to make sure 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 that they have a learning disability can take time. "The main problem is that learning disabilities are quite hard to diagnose very early in life," says Dr Martin Ward Platt, consultant paediatrician at Royal Victoria Infirmary, Newcastle-upon-Tyne.

"There may be very little in the way of developmental signs. If a child hasn't started talking by the age of two, that can be linked to learning problems later on, but this is not certain."

Most learning disabilities are obvious by the age of five. "Intellectual function [also known as cognitive ability] can only be assessed by testing children from the age of five, so most children with these disabilities are only diagnosed when they start school," says Dr Ward Platt.

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). You can talk to parents of children with learning disabilities in your area to ask whether they can recommend a good one.

Find a local learning disabilities support group through Mencap

Getting a learning disability diagnosis

Under the Children Act 1989, social services has a duty to assess a "child in need", including children with disabilities. The aim is to identify the child's specific needs and draw up a plan of action for meeting these needs.

For more information on all aspects of being a carer, including practical support, financial matters and looking after your own wellbeing, see Care and support.

If you believe your child has an undiagnosed condition, your GP should be able to help you to get the advice you need. The charity Scope's expert forum (formerly run by Netbuddy) includes advice for families who can't get a diagnosis.

Your child may also benefit from an assessment under the Children Act. The assessment establishes the needs of a child with a disability and which services would be best for them. The purpose of the assessment is to draw up a plan of action for your child.

After diagnosis

If you've had concerns about your child, you might feel relieved to have a diagnosis. Don't be afraid to ask any questions. Find out as much as you can about your child's needs.

Most parents assume that their children will be healthy and develop normally, so hearing that your child has a learning disability can come as a shock. It takes time to accept the diagnosis and to mourn the child you might feel you have lost.

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 accept what has happened. 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.

Healthtalkonline has videos of parents talking about their experience of hearing a diagnosis after their child was born.

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

Early Support is a way of working to improve the delivery of services for disabled children, young people and their families. It enables services to co-ordinate their activity better and provide families with a single point of contact.

Developmental delay

Sometimes the term "developmental delay" is used to describe a child's condition if they are not progressing as expected. "By itself, 'developmental delay' is not a diagnosis," says Dr Ward Platt. 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?

Delay is not always significant. "Some children are slow to walk, so may appear to be delayed. But if one of the parents was very slow to walk, then it's likely that the delay just runs in the family," says Dr Ward Platt.

 

Down's syndrome: Victoria's story

Richard Davis's daughter, Victoria, was born with Down's syndrome. He talks about the impact the chromosome disorder has had on Victoria, and also on family life.

Media last reviewed: 17/12/2012

Next review due: 17/12/2014

Page last reviewed: 31/05/2013

Next review due: 31/05/2015

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