If your child receives a diagnosis you may feel a mixture of emotions. Remember that your child has not changed because they have been diagnosed, but having a diagnosis means that you now have the information you need to help you and others around you to understand your child and support their needs.
It's common for parents to react differently to a diagnosis, it could bring feelings of:
Neurodivergent children and young people have strengths, abilities and interests that bring a rich diversity and unique perspective to the world. By recognising their strengths and supporting their needs, you can create a neuro-affirming environment at home.
Following a diagnosis you will receive some initial information regarding your child's diagnosis, followed by signposting to local services. It's important to remember that a diagnosis doesn't change how your child experiences the world. They will still have the same strengths and differences as before, but it's a good opportunity to learn more about how you can support them to thrive.
Neurodevelopmental Service
The neurodevelopment service is a diagnostic assessment-only service. Following a diagnosis, you will have access to an information pack containing avenues for guidance and support about autism and/or ADHD, as well as information about the additional resources and support services available.
The team also offer initial support, including:
Read more about the neurodevelopmental service here
Family Action
The team at Family Action offer support, resources and signposting to parents and careers of children awaiting assessment, or recently diagnosed with autism or ADHD. They aim to help parents and carers better understand their child's behaviour and communication to provide a toolbox of strategies to help them as they grow.
They offer:
Choosing whether to tell people about your child's diagnosis is a personal decision and is different for every family.
As a parent or carer of a younger child, you will decide whether, when and how to talk to your friends and family about your child's diagnosis.
If you are a parent or carer of older children, you should discuss the diagnosis with them and decide together, respecting your child's preferences. As a child grows older they may decide to tell some people, but not others, for example, they may be happy for their teacher to know, but not for their classmates to be told until they feel comfortable.
Positive reasons to disclose a diagnosis could include:
Some neurodivergent people may feel anxious about disclosing their diagnosis because of a lack of understanding about neurodiversity, and acceptance of neurodivergent behaviour. Children's and young people's life experiences and family contexts may also affect their decisions.
Physical & Mental Health
Following a diagnosis, and as your child grows older, you can talk to your family doctor (GP) about any concerns you or your child may have. They can recommend and refer your child to health professionals who work with neurodivergent young people to help support them in their day-to-day lives:
Support in Education
SEN support is available without a diagnosis in educational settings and is organised by the school special educational needs coordinator (SENCO). Following a diagnosis, it can be useful to book an appointment with the school SENCO to review the support that your child is receiving.
Young people in further education (FE), can access SEN support by speaking to student support services in their college or setting.
The level of support depends on your child's needs, and if their needs cannot be met within the resources normally available in their educational setting they can be referred for a needs assessment called an education, health and care needs assessment (EHCNA). If additional support needs are identified an education, health and care plan (EHCP) will be put in place which is a formal document specifying what support is needed.
As a child enters higher education (HE) at university, their EHCP will no longer apply. However, it can be useful to share the previous plan with the university to help them understand your needs and be sure the right reasonable adjustments are in place.
National Charities & Support Groups
National charities have been set up to offer advice for many neurodivergent conditions. Many have sections dedicated to young people and their experiences of neurodivergence. They can provide:
Local Support Groups
The assessment team who have diagnosed your child should have given you information on local support groups that:
Social Media & Online Forums
Many young people with neurodivergent conditions share their stories on social media platforms. It can be useful for young people to listen to other's experiences, but it should be noted that these are personal experiences and should not be taken as healthcare advice.
Social media profiles of national charities can be a better place to start, although it's useful to remember these are not monitored or contributed to by the NHS.
It's important to look after yourself and following your child's diagnosis, it can be useful to consider what support might be available to you as your child's caregiver.
Support at Home
Anyone over 18 can ask for a carer's assessment if they care for someone. It can help to identify ways that local services can support you while you care for your child. It could recommend:
Find out more about the carer's allowance here
Financial Support
Disability Living Allowance can be claimed for children who have additional care needs. It can help with extra costs if your child is under 16 and requires much more looking after than a child of the same age who doesn't have a disability.
Find out more about disability living allowance here
National Charities & Support Groups
National charities have been set up to offer advice for many neurodivergent conditions. Many have sections dedicated to young people and their experiences of neurodivergence. They can provide:
Local Support Groups
The assessment team who have diagnosed your child should have given you information on local support groups that:
Let us know what you think!
We've been working together in Norfolk and Waveney with families and professionals to put together information, advice and resources that are helpful to families. Let us know what you think, and anything we could change or add to make it even better.
If you live in Norfolk
You can contact the Healthy Child Service team by calling Just One Number on 0300 300 0123 or texting Parentline on 07520 631590. Our opening hours are 8am-6pm Monday-Friday (excluding bank holidays) and 9am-1pm on Saturdays.
If you are 11-19 you can text ChatHealth on 07480 635060 for confidential advice from one of our team.
If you live in Waveney
Norfolk SEND Local Offer provide information and advice on services for young people with additional needs in Norfolk.
Suffolk SEND Local Offer provide information and advice on services for young people with additional needs in Waveney.
Mencap is a national charity who support people with learning disabilities. They offer a free Learning Disability Helpline with advice and guidance. Call 0808 808 1111 to speak to a trained professional.
Kooth offers online counselling, advice and emotional well-being support for anyone aged 10-18, seven days a week until 10pm.
