Getting a diagnosis for a child with additional needs
If you are a parent of a child who presents or has additional needs, receiving a diagnosis can be a useful first step in finding out the types of support which might be most helpful for your child. A diagnosis can help you and others better understand your child and can be the key that unlocks access to specialist support in lots of areas. It’s not always a short or easy journey to receive the right diagnosis, but can be beneficial long term.
So, how and when does the process of getting a diagnosis begin? What can you expect along the way? We’ve put together a roadmap to guide you so you feel empowered and confident to take the next step however your journey unfolds.
First steps to getting a diagnosis
Every child is individual, so their path to diagnosis will be unique, even if their symptoms or condition might seem similar to another child’s. Factors like your child’s age, symptoms and individual needs will all be considered.
A health professional will diagnose some conditions at birth or at a very early age. Other conditions may become more visible as a child gets older when a diagnosis could come from a health visitor, GP, school, or SEN worker. Sometimes a health or education professional will refer your child for extra tests or an assessment by a consultant or specialist.
Some conditions are straightforward to diagnose, whilst others take more time to identify. Your child may also have a mix of conditions which can make diagnosis more difficult and mean that the process takes longer.
If you feel it’s time for you to begin the process of seeking a diagnosis for your child, you can always begin by talking to someone like your GP or their teacher about it and ask for their advice.
Because you know your child best, your knowledge and insights are hugely valuable, and there is a lot you can do to help the diagnostic process along. For example, you might use a specific journal or app on your phone where you log certain behaviours and symptoms. Including the time, place and situation can help identify certain patterns and build a picture of what might be going on for your child.
Asking other people who know your child for their observations can be useful too, as other parents, teachers, club leaders and health professionals will all have their different perspectives.
You could also attend a local support group to talk with parents of children who display similar behaviours or symptoms or research their experiences online.
Waiting for a diagnosis can be challenging for many families after any meetings, tests or assessments. Parent carers share how useful it is to identify a main point of contact, someone coordinating the diagnosis and who has an overview of the whole process. Your GP will know who this is, and whilst it’s difficult for them to know exact timelines, your GP should also be able to give you a timetable to help you know what to expect and when.
Other helpful advice from parent carers includes keeping important names, numbers, and addresses in one place, like a physical folder or a file on your phone, so you have them on hand when needed. Preparing for meetings with a list of the main bullet points you want to discuss is also useful. Parents say time can be short and seem to fly by in these meetings, so having these important points on your phone or in your notes, so you don’t forget to mention them can be helpful.
Taking someone with you can also be a great support, as parents often say that these appointments can feel overwhelming, and they feel more confident with a friend or trusted family member there with them. After each meeting or referral, it can be a good idea to keep a log of what was discussed, including any outcomes or proposed action steps covered, even if it’s just a name and a sentence or two.
Because it could be a long wait and emotions can run high, it is important to remember to look after yourself. There can be setbacks, cancellations and delays, so prioritising time to relax as much as possible and focus on the positive aspects of life with your child without letting the diagnostic process take over is important. For some further information about looking after yourself as a carer, please click here.
Once you have received a diagnosis, your GP or specialist should provide some sources of information to support you, signposting you to websites, organisations and support groups to help you better understand your child’s condition and what you can do to best support them. You can access tailored support from relevant organisations and meet with other parent carers who will understand what you are going through.
A diagnosis can help you and those around you better understand your child’s needs related to a specific condition. Speaking to friends and family and those in your child’s support network about their condition can help them feel more informed and confident in supporting them with any specific needs.
If your child is in school, you might be talking with your special educational needs coordinator (SENCO) about special educational needs (SEN) support, an Individual Education Plan (IEP), or an Education, Health and Care Plan (EHCP) to ensure your child receives any additional or updated support following the diagnosis. Could SEN support or an EHCP be right for your child? Our articles here will help you decide.
Receiving a diagnosis can give rise to a wide range of emotions. As every family’s journey is unique, everyone will feel differently about the diagnosis. These emotions are a natural part of the process, and you can find out more about that here in our article on Managing Difficult Emotions as a Parent Carer.