Just received/waiting for diagnosis

Last Updated: 07/07/2020

Getting or waiting for a diagnosis for your child can be a distressing experience. Whilst for others you may feel that you have gained understanding of your child's needs. One of the biggest challenges is coming to terms with the fact that your child's future will be different from the way you imagined it.

You may feel blame, disbelief, disappointment, self-pity, shock, anger, numbness, guilt and denial. It's important to remember no one is to blame and with time, your emotions will become easier to manage.

Some parent carers describe the period after diagnosis as a period of mourning, while others feel like it is like a bad dream, or that they are living in a bubble outside of reality. You may also elated as you feel you now have proof of your child/young person's needs.

When you're going through the process, you may/may not receive lots of information all at once, and you may find this too much to take in and may find this overwhelming. In fact, it may be weeks or even months before you feel able to find out more about your child's needs.

Digesting the information

The mixed emotions that follow a diagnosis can take a long time to come to terms with, so finding ways of coping are very important. Most importantly, don't forget yourself. Having family and friends to talk to at difficult times can help to relieve emotional stress.

Try to deal with the information piece by piece as you need it, and don't be afraid to ask the people working with your child to go back over anything you might have missed.

Some parent carers find that getting as much information as possible about their child's condition helps them to cope and plan for the future. Others find their emotions are enough to deal with, and prefer to get to know their child as an individual before finding out more about their learning disability. There isn't a right or wrong way.

If you are looking for information or suppory here are a couple of key links with information relevant to West Sussex
Portage is a home visiting educational service for very young children with significant support needs from birth. Other children are referred later as their needs are identified.
Factsheets on conditions
Find a Parent Support Groups
Expert Parent Programme Getting the most from working with health professionals for your child
Benefits Advice for Families and Carers of children and young people with special educational needs and disabilities
Making Sense of It all
Reaching Families Face-2-Face Befriending
West Sussex Parent Carer Forum their phone is manned Mon – Fri, if you leave a message, your call will be returned. Become a member and receive our email bulletins on a regular basis. They use their Facebook page to post information and local/national updates.

If you're looking for information and can't find it the Local Offer team SEND Information, Advice and Support Service can help you find it. Call 0330 222 8555 or email [email protected]. If we are out of the office please leave a message with your contact phone number and we will return your call as soon as possible.

My child/young person doesn't have a diagnosis

Whilst some children and young people receive a diagnosis at a certain age, others may receive one later. Whether your child has a diagnosis or not, it is important that the support can be put into place for the child's needs. You can always speak to your child's Pediatrician or General Practitioner. If it is about support at school then you may want to speak to your child's teacher or the school Special Educational Needs Co-ordinator (SENCo)/Inclusion Manager.


Myth Breaker:
  • Education settings need to wait for an official diagnosis before putting in strategies and support in place for your child. GENERALLY THIS IS NOT TRUE (if it is a 'therapy' or the needs of your child/young person are based in medical interventions this will vary. However education settings can still adopt best practices to support the wellbeing needs of the child/young person). Education settings can ask for support from services (e.g. autism social communication team, learning and behaviour team (LABT) speech and language therapy (SALT) without the child having an 'official diagnosis' to ensure they can better understand strategies that can be put in place to support your child/young person;
  • Your child must have a diagnosis to attend Short Breaks. THIS IS NOT TRUE. If your child/young person has an identified additional need in which they may need further support they may be able to attend 'Short Breaks'; and
  • Your child must have a diagnosis for you to be able to attend a parent support group. THIS IS NOT TRUE. If you feel as a parent carer you could benefit from attending a support group you can. Remember, others from the group may be able to empathise with your experiences of going through the process.