For many parents, the most stressful time of all is when their child is first diagnosed, or is going through the process of trying to get a diagnosis.
You may feel completely devastated to start with, then somehow angry – ‘Why us? Did we do something wrong? Could we have done anything to prevent it? Or you may just feel bereft – ‘This isn’t the child I expected. I won’t be able to cope, I don’t want to have to cope’. Or you may feel confused because you were expecting a diagnosis but still feel shocked, or perhaps you were hoping for a diagnosis but still feel grief. But you can be sure that whatever you’re feeling – anger, despair, fear or overwhelming protectiveness – somebody has been there before and there are people who can help at this critical time.
You may be told there’s going to be something wrong before your child is born or perhaps your baby will start their life getting specialist medical support in a neo-natal intensive care unit. Staff at these units can offer you advice and support and signpost you to other services once your child is discharged.
Other parents may have had an uneventful pregnancy and birth but will start to have concerns about their child when they are very young, perhaps by comparing them with siblings or other children of a similar age. And some of us may not have
given it a thought until a nursery worker or teacher tells us there’s something different about the way our child learns or interacts. However and wherever the problems are first picked up, it’s rarely a neat and tidy moment of revelation – ‘he has X and you should do Y’. In fact, many children with additional needs never get a specific diagnosis. Their needs may be too complex, or their symptoms don’t fit a pattern, or there may simply be no identifiable reason for the child’s condition.
You may more often be at the beginning of a frustrating ongoing process of trying to work out what’s wrong and what you need to do.
If your child is under five years of age, you should speak to their health visitor about any concerns you may have. They are experts in child development for under fives and they can offer you advice on a whole range of topics from breast-feeding and weaning, to potty-training and sleep difficulties. They can also refer you to for more specialist assessment and support if necessary. There are specialist health visitors and nurses based in the Seaside View Child Development Centre in Brighton and the Scott Unit Child Development Centre in East Sussex.
You can also speak to your GP about your child’s difficulties. They may refer you to a paediatrician who specialises in conditions affecting children or a consultant who specialises in particular conditions or areas of the body. Depending on their particular difficulties, your child may also be referred to specialist health teams such as Speech and Language Therapy if they have difficulty swallowing, communicating or Occupational Therapy if they are having trouble acquiring every day skills.
School or nursery staff
If your child is at primary school, or in a preschool or nursery, you can speak to their class teacher or nursery worker. And they in turn may get you to discuss your child’s difficulties in more detail with the special educational needs coordinator (SENCO) or Inclusion Manager at the setting. In secondary school, the SENCO, Inclusion Manager or school counsellor are appropriate people to contact.
Another person that you might talk to about your child’s difficulties at this point is the school nurse. In mainstream schools, this is usually a visiting nurse, who is available termly. He or she can check your child’s health and development and refer you to other specialist health practitioners. Schools usually notify parents of upcoming visits and this is an opportunity to meet and discuss any health or medical concerns you may have.
Children who need additional support to access education may be referred for specialist assessment and educational support services through Brighton & Hove Inclusion Support Service or the Inclusion and Special Educational Needs and Disabilities (ISEND) Service in East Sussex.
We discuss the special educational needs process in much more detail in the Education section. If your child has special educational needs (SEN) to the extent that they are assessed for an Education, Health and Care Plan, this plan should include any health needs that are related to their SEN. Our Education section also contains information on support for children with medical conditions in school.
Some of us, however, find that the confirmation of our deepest fears can hit hard. At times like this, you may really benefit from talking to parents of children with similar conditions or seeing if there are any charities or befriending organisations that can help you through the darkest days.
Your council’s Local Offer or Family Information Service Directory publishes details of local parent support groups for kids with any disability or specific conditions.
In Brighton and Hove, Amaze runs the Face 2 Face befriending service which matches parents going through diagnosis or other challenges with volunteer befrienders who’ve been down the same road. Parent carers in other areas could contact their local parent carer forum to connect with other parents.
You could also ask the specialists who were involved in diagnosing your child about national support groups or charities for your child’s specific condition. It is also worth enquiring whether their service provides any free counselling, courses or talks for parents of newly diagnosed children.
Read more about ongoing support for you and your family in Looking after yourself
Getting a second opinion
Sometimes parents want medical diagnoses confirmed. Usually this is not because they don’t trust the doctor, but simply that they need to feel absolutely sure that they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or consultant may be willing to refer you to a different consultant for another opinion, but they don’t have to do this if they don’t agree that it’s necessary. Parents who can afford to might choose to approach consultants on a private basis. Private health care is very expensive and it is not at all easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about these matters from The Patients’ Association, the Care Quality Commission or your local branch of Healthwatch or PALS
Many parents will find that the diagnostic process can take quite some time. This may be due to waiting lists but can also be simply because it can take a long time to gather the information and conduct the necessary observations. It is important to seek support during the journey if it is likely to be a long one. Some of us will never get a concrete explanation of our child’s special needs. Some will get vague diagnostic labels like ‘global development delay‘, which can suddenly transform into a ‘developmental disorder’. Some will find that they’ll start off being told their child has one thing, only to be told they have another in later years.
Without a concrete diagnosis, professionals may find it difficult to give you answers to questions about the future: ‘Where will my child be in ten years’ time?’, or ‘Will he grow out of it?’ And family and friends can find it more difficult to accept there is a problem and to give you the support you need. These states of ‘not knowing’ or ‘all change’ can be a huge emotional struggle for families, as can the strain of pushing and pushing for a proper explanation. For many parents and their children it’s a battle worth fighting.
Though a diagnosis is not the Holy Grail, you should trust your instincts; if you sense something’s amiss or your child is struggling, keep pursuing things to get answers and the right support for your child. On the other hand, there is a huge variation in what is considered normal development and it may be that your child, although very different from their peers does not have a specific condition or disorder. Sometimes there isn’t an explanation and focussing all our attention on getting a diagnosis takes our energy away from supporting our child. When you are struggling with not having a diagnosis the following strategies may help.
Strategies for coping with not getting a diagnosis
- Focus on what’s really important – namely working out what help your child needs, not what label they have.
- Find an explanation that works for you. You might not be able to tell friends ‘my child has such and such condition’ but perhaps you can say something like ‘his instincts are not like other children’s’ or ‘she has difficulties with understanding social situations’.
- Just because you don’t have a diagnosis, that doesn’t mean you’re not right to be concerned and to ask for help for your child.
- Access all the help you can as early as possible. Even if your child does grow out of their difficulties this will help them in the meantime and if they don’t, you’ll be glad you acted quickly.
- You don’t need a diagnosis to get all sorts of extra help for your child, for example extra support at school or DLA – so ask for it.
- Sometimes you will need evidence about your child’s needs or difficulties but that’s not the same as a diagnosis. For example, for claiming DLA you will need some confirmation from other people that your child needs extra help but this doesn’t mean a specific diagnosis is necessary.
- Watch for change, monitor your child’s progress. They might not have met the clinical criteria for a particular diagnosis at three, but if they’re still demonstrating certain behaviours at seven, they may now be diagnosed
You can call the Amaze SENDIASS helpline. Our advisers will give you advice and support whether your child has a diagnosis or not.
Download Amaze’s fact sheet with more advice about Living without a diagnosis – BRIGHTON & HOVE [pdf 670kb]