Your feelings about your child’s diagnosis: what to expect
Every parent is different. But after a diagnosis of disability or autism spectrum disorder (ASD), it’s very common for parents to feel confused, overwhelmed, shocked, disbelieving, numb, worried – or a combination of all these things.
A range of feelings is normal.
As you get used to the situation, you might feel sad, especially when you think about your disappointed hopes and dreams for your child and yourselves. There can be feelings of blame – directed towards yourselves and other people – as well as fear about the future. You might also feel confused and overloaded, with too much information, conflicting advice and pressure to make decisions.
Your feelings can be influenced by how your child’s additional needs affect other parts of your lives – it could have an impact on your work, social life or the amount of time you can spend on personal interests or hobbies.
The amount of support you have from others, like your partner, family and friends, might also affect how you feel. For example, lots of encouraging support will help you feel more positive about your new role.
When you finally get a diagnosis of your child’s condition, you might even feel relieved, especially if you’ve been worried about your child’s development for a while. A diagnosis often means you can start asking questions and making decisions.
There’s no ‘right’ way to feel. You can’t prevent your feelings, and you shouldn’t try. Dealing with your feelings is part of coming to terms with the diagnosis and moving on with your life, your child’s life and your family’s life.
– Parent of a child diagnosed with Fragile X
Coping with your feelings about your child’s additional needs: tips
Most parents and families eventually start to feel OK about their child’s additional needs. They have positive feelings like love, joy, acceptance and satisfaction, and they start making new plans and having new dreams for their child.
These tips might help you manage your feelings as you get used to your situation.
Looking after yourself
- Accept your feelings, whatever they are – don’t push them away. Acknowledging your emotions is a healthy thing to do.
- Give yourself time. Negative feelings won’t stay forever, but they can come back from time to time – for example, at your child’s birthday, when someone in your extended family has a child, when there’s a family wedding or graduation, or when your child starts preschool or school. Over time, you’ll get better at recognising the feelings and dealing with them.
- Be kind to yourself. Take care of yourself and keep healthy.
- When you’re ready, talk to people close to you, particularly your partner, about how you’re feeling. Try to accept that other people might have completely different feelings from yours.
- Get to know other parents who are in similar situations. It can help to talk to people who understand what it’s like to have a child with additional needs.
Enjoying time with your child
- Try to avoid comparing your child with other children. Every child is an individual.
- Celebrate successes and milestones – yours and your child’s – and focus on positives and progress. Your child might be developing differently from other children but will be reaching her own goals and milestones along the way. There’ll be lots of reasons to feel positive.
- Take time to just enjoy life with your child, without focusing on his additional needs. With time you’ll get better at doing this.
- Collect information about your child’s diagnosis from reliable sources like government, hospital and university websites. Not everything you find on the internet is based on reliable scientific research.
- Seek professional support and information. Your local GP and community-based early childhood intervention services are good places to start.
– Parent of a teenage child with cerebral palsy
Different relationships, different feelings about additional needs
The way siblings feel will depend on:
- how old they are
- how their parents are coping
- how parents and others talk about their sibling with additional needs
- how much support they’re getting
- whether they understand the additional needs.
Grandparents, family members and friends
Extended family and friends will also be affected by the diagnosis, and can experience the same range of feelings as you. Read our tips on how to deal with other people’s reactions to your child’s additional needs to your child’s disability.