Getting a diagnosis

Children can be born with a disability or medical condition for many reasons. Parents often worry that this may be their fault. It is important to remember this is rarely the case.

Diagnosis is the formal process for identifying a disability, learning difficulty or health condition.

If you think that your child may have a medical condition, special educational need or disability you can talk to:

• your GP (doctor)
• your child’s health visitor
• the school nurse at your child’s school  
• special educational needs coordinator (SENCO) from school
• Children’s Community Health Services

Your child may be referred to a community health service or specialist service. Some children may be assessed by several services who will then work in partnership to diagnose and / or support your child.

It can often take a while to get a diagnosis for a child. You should receive an initial appointment within 18 weeks, but it may take longer to see a specialist or a team to confirm a diagnosis. This may be because your child’s development, learning and behaviour need to be monitored over time. Behaviour refers to how your child may act or the mannerisms they show in response to different environments or situations and doesn’t necessarily mean behaviour that is inappropriate.

Keeping a behaviour diary can help. This could be completed at school and home to help you see if there are any patterns in your child’s behaviour – it may show, for example, that quieter environments support your child’s ability to learn or that your child misreads certain social cues.   

Your child’s school or educational setting should also be monitoring their educational and social development.

Contact, a charity who support families who have children with a disability have produced  guides about understanding behaviour. This explains how your childs behaviours are a form of communication and gives tips about how you could help support them.

The Community Children’s’ Health Partnership (CCHP) website has information on the different services that are available, with information and advice on how to access support.

You are able to self-refer to certain services – such as speech and language therapy, occupational therapy and physiotherapy.

This website will be updated regularly with the latest information.

Sometimes professionals are unable to diagnose a child. This may be because your child:

• has a rare condition
• experiences features or symptoms linked to many conditions, making it difficult to make the correct diagnosis
• has symptoms that become more noticeable as they get older, leading to a late diagnosis

For more information you can read our article on Support for undiagnosed conditions.

Trial the NHS learning disability screening tool for children and young people

The learning disability screening tool has been developed by NHS clinicians based on feedback from families.

It is a short questionnaire that can help identify if a child or young person aged between 6 and 18 may have a learning disability. 

Assessment can be a complex and time-consuming process for everyone involved. Services recognise the challenges faced by families and are looking for faster and more efficient ways of getting families the support they need. We're trialling the tool in the South Gloucestershire area to find out how useful it might be. After the trial period, we'll review the tool to understand the benefits of using it.

If you use the tool, we might contact you to ask you if you'd like to give us any feedback about it. 

The tool cannot:

• tell you if the child or young person definitely has a learning disability or not, it can only give you an indication
• diagnose the specific learning disability the child or young person may have

The learning disability tool is designed to be used by:

• young people
• parents and carers
• families
• professionals such as nurses, teachers, social workers, health visitors, GPs and police officers

You can use the tool with or on behalf of the child or young person.

The tool is not suitable for children and young people aged:

• under 6
• over 18

Remember that the tool can only give an indication of whether the child or young person has a learning disability or not. You must always get an assessment from a professional, such as your GP, to confirm what the tool tells you.

When you've answered the questions in the tool, you'll get one of two outcomes.

Outcome 1

Your responses indicate that it's likely the child or young person has a learning disability. You should ask the child or young person's:

• GP for support and an assessment
• school nurse and Special Educational Needs Coordinator (SENCO) for support

You could also ask your GP to:

• add the child or young person to the South Gloucestershire Children's Learning Disability Register
• arrange an Annual Health Check for the child or young person

Outcome 2

Your responses indicate that it's unlikely the child or young person has a learning disability.

If you still have concerns, talk to the child or young person's:

• GP
• school nurse
• Special Educational Needs Coordinator (SENCO)

You can access the tool on the Learning Disability Matters website. 

Support for parents and child

You may be concerned that if your child does not have / get a diagnosis then they will be further disadvantaged. A diagnosis may be needed to access certain courses or support however having no diagnosis should never be a further disadvantage.

Your child and your family are entitled to support regardless of whether your child has a diagnosis or not.  The most important thing is to understand your child’s needs and gain the necessary help to support them to achieve their potential.

Parents of children with SEND often find that the best type of emotional and practical support is from other parents.

You can also find parent support groups for you and play and leisure opportunities for your child by searching our Local offer.