Receiving a Diagnosis


Whether you receive a diagnosis at your child’s birth or further down the line, it is generally a time of great emotional turmoil. For some it is a relief to finally have a name to put to whatever behaviour or ill health your child has been displaying. Everyone reacts differently to a diagnosis, some people know already in their heart that things are just not going right, some parents are just having a routine scan, when their whole world is thrown upside down and for some people it’s the last thing they expect after having a healthy pregnancy.

Often a diagnosis is a gateway to services and/or treatment and there is great relief in that. However, even in situations where you feel you already “know” what the diagnosis is before you get it, actually hearing the words from a professional can instigate feelings of shock, denial and anger.

It’s not unusual to feel that the diagnosis is a result of something that you as a parent did, or didn’t do but this is highly unlikely. Many families feel a need to “grieve” for the child they thought they had, which can instill feelings of guilt. All of these emotions are entirely natural and are a part of the process of acceptance. This process can take different amounts of time for each member of your family. It’s not uncommon for some family members to refute the diagnosis completely, before finally coming to terms with it.  One of the most important things to remember is that you are not alone. There are many families going through exactly the same emotions as you are and there are many who have come through it and are a bit further down the road.

We would urge you to make contact with other parents of children with a similar diagnosis through an internet or local support group as soon as you feel able. For some, turning to family and close friends is a natural progression but for many people, talking to family around the time of diagnosis is very difficult for numerous reasons. Support groups can be an invaluable source of comfort and information at a time of when it can feel like you are being bombarded with conflicting feelings and information. They can help you make sense of the feelings you are having and give you the benefit of their experience of services in your area. We have a private support group on Facebook for parents to connect with each other and share experiences and information.

You may feel the need to research the condition affecting your child. If so, the library is a good place to start. Be wary of “Dr Google” when researching;- the internet has a wealth of information and some excellent websites but it’s important, especially in the early days, to stick to well established websites where the information you are accessing actually comes from experts in the field. Whatever method you choose to navigate your way through this highly emotional time, it’s very important to talk through your feelings and not neglect your own health. Try to remember that once you have come to terms with the diagnosis you can move forward to a place where you can help your child reach his/her full potential.

When asking other parents how they dealt with a new diagnosis, the following were points that they felt worth sharing:

  • Do not isolate yourself from the world!
  •  Do not under any circumstances blame yourself for your child’s condition; this is NOT your fault!
  • DO take each day as it comes, it is similar to a roller-coaster  you will have highs and lows, but when you have both share them no matter how small you think they are.
  • Do not Google until ready and even then, read everything with caution!
  • Seek information from others when you are ready, you can do it anonymously on line if you are just not ready to talk.
  • If you feel angry, that’s okay but do try to talk to someone.
  • Go and see a counselor to help you get your mind around everything if you find that you are not coping. Depression is something that can creep up on you and we are always the last to recognize symptoms and take care of ourselves.
  • If your child is attending a therapy Center you may be assigned a social worker, they are there to HELP you and your child.
  • Some parent’s talk about grieving for the baby they thought they would have, but you know, you will deal with this your own unique way, so try and not compare yourself to other people.
  • Some parent’s get great comfort from previous articles and blogs written by other parents and some don’t. So don’t feel you are committed to feeling one way or another.
  • The main thing is, you are not alone, and we are all here to help, when you are ready!

More detailed information for parents and professionals can be found on Informing Families website

If you have received a new diagnosis and would like to get in touch with another parent to talk through things, please contact


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