After a diagnosis

A diagnosis can be difficult to come to terms with. It may also, for some, come as a relief - as you may feel better able to understand your child and their needs. Remember, your child is no different than they were before the diagnosis. Your child is the same person they have always been. However, diagnosis may allow you to better understand their needs and arrange support.


Social care:

Your local authority has a duty to provide services for children with additional needs, whether they have a diagnosis or not. You can contact your local authority to ask for an assessment for your child’s needs, and you can also ask for an assessment of your needs as a carer. You also may find financial support through your local authority, including benefits such as Disability Living Allowance & Carers Allowance. You can learn more about them by exploring Hibi’s content on benefits.

Each local authority will have a parent carer forum. These are organised groups of parents of children with additional needs who make sure that services in the area meet their needs. They are a great way of meeting other parents. You can find your local forum on this link. Every council must have a “local offer”. This is the term for the support they provide for young people with special educational needs and disabilities. Ask your council or local Special Educational Needs and Disabilities Information Advice and Support Services (SENDIASS) about the “local offer”.


School:

You can speak to your school about how they may be able to better support you to get extra help for your child, both before and after a diagnosis. The diagnosis itself may help your child get the extra support they need. You can also include a diagnosis in an EHCP application or renewal. You can learn more about them by exploring Hibi’s content on education.


At home:

There are support services available for you as a parent to learn more about how you can support your child and their specific needs. For example, the National Autistic Society runs EarlyBird post-diagnostic support programs for parents carers for autism. You can also explore Hibi’s content on parenting strategies. It’s also important to remember, if applicable, the important role that siblings play, and to take time to support their and your own wellbeing.

You may find researching and better understanding your child’s condition helpful - though do remember that every child is different. Do ask the professionals and other parents you come across for recommended reading. The following are also helpful resources:

• NHS conditions pages

• The charity Contact has an extensive A to Z of conditions. There's information on support organisations, symptoms, causes, diagnosis and treatment.

• SWAN UK (syndromes without a name) supports families of children and young adults with undiagnosed genetic conditions.

Support without a diagnosis

Families and children often wait a long time for a diagnosis, with many not getting one altogether. But that doesn’t mean support isn’t available. In cases without a diagnosis, it’s important to communicate your child’s unique needs. You can use tools like Hibi’s care passport to support this. You’re also entitled to have a social services assessment of your child’s needs, and the needs of you as a parent carer, regardless of whether your child has a named diagnosis. In the UK, the charity Contact provide good resources here to support those families without a diagnosis, and SWAN (syndromes without a name) supports families of children with undiagnosed genetic conditions.