When children are diagnosed with disability, autism or other additional needs: your feelings
If your child gets a diagnosis of disability, autism or other additional needs, you might have a range of feelings, especially while you get used to the diagnosis.
You might have times when you feel sad or have a sense of grief, especially when you think about the dreams you had for your child and family.
There can be feelings of blame – directed towards yourself and other people. Or you might wonder why this has happened to your family.
It’s also common to worry about the future, for both your child and your family.
You might feel relieved too, especially if you’ve been worried about your child’s development for a while. A diagnosis means you can ask questions about your child’s development and get support from professionals.
At the same time, you might feel confused and overloaded with information, conflicting advice and pressure to make decisions.
Your feelings can be influenced by how your child’s needs affect other parts of your life – it could have an influence on your work, social life or the amount of time you can spend on personal interests or hobbies. Your child’s diagnosis could also alter your sense of identity as a parent, particularly if you start connecting with disability-specific parent support groups or find yourself advocating for your child’s needs.
The amount of support you have from others, like a partner, family and friends, might also affect how you feel.
There’s no ‘right’ way to feel, and all your feelings are valid. 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.
I’m just all over the shop. My feelings change from minute to minute – sometimes it feels like they’re out of control.
– Parent of a child diagnosed with Fragile X
Managing feelings about child disability, autism or other additional needs: tips
These tips might help you manage your feelings.
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, on your child’s birthday, when your child starts preschool or school, when you’re faced with inaccessible facilities or when you feel tired. Over time, you’ll get better at recognising the feelings and dealing with them.
- Be kind to yourself, and remind yourself that you’re doing the best you can.
- Take care of yourself and keep healthy.
- 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.
- 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 their own goals and milestones along the way. There’ll be many reasons to feel positive.
- Take time to just enjoy life with your child, without focusing on the things your child needs support for. With time you’ll get better at doing this.
Seeking help and support
- Collect information about your child’s diagnosis from reliable sources like government, disability association, hospital and university websites. Remember that 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.
- Seek support from those around you. Friends and family might be able to give you practical or emotional support.
For a while after the diagnosis all I could see was his cerebral palsy. With time, it’s like I got Jack back. I almost stopped seeing the disability and starting seeing the person that we love and are raising.
– Parent of a teenage child with cerebral palsy
Different relationships, different feelings about disability, autism or other additional needs
Siblings
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 their sibling’s disability or additional needs.
Siblings need to feel that they’re just as important to you as your child with disability – that you care about them and what they’re going through. It’s important to talk with your other children, spend time with them, and find the right sibling support.
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. With planning and preparation, you’ll be able to handle other people’s reactions to your child’s disability, both helpful and unhelpful.