Learning disabilities: coping with a diagnosis

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

Watch a video about Down's syndrome

However, your child’s abilities and needs can be assessed to make sure they get the support they need.

Diagnosis

Some learning disabilities are discovered at birth and 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 they are quite hard to diagnose very early in life,” says Dr Martin Ward Platt, consultant paediatrician at Victoria Royal 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. Lesley Campbell of the charity Mencap says: “At a very young age it is hard to predict what the abilities of a child will be at the age of, for example, five, 11 or 16 and beyond. And although that’s often what parents want help with, all of the research indicates that it’s pretty difficult to predict.”

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.

You can find a local learning disabilities support group through Mencap

After diagnosis

If you’ve had concerns about your child, you might feel relieved to a 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. “In the very early stages, talking to other parents is a useful source of support,” says Campbell.

“It’s only other parents who can help you in this situation. They might be able to recommend a good playgroup or counselling service, for example, or the name of someone at the local authority who can help you find out about the services available for you and your child."

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

Developmental delay

Sometimes the term 'developmental delay' is used to described 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:

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.

Getting support

Under the Children’s Act, 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 them. For more information on all aspects of being a carer, including practical support, financial matters and looking after your own wellbeing, see Carers Direct.

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

 

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