Receiving a diagnosis is always an emotional exercise. Feelings can range from relief, shock, anger and grief. These feelings can waiver in intensity and it is important to acknowledge that this is quite normal. You can move into and out of each of these stages a number of times. Take time to absorb the news, there is no right or wrong way to feel but don’t hesitate to seek help if you are struggling to process your emotions.
Autism NT support groups are a fantastic way to share your experiences and to hear how others have navigated the start of their ASD journey. Autism NT staff are also available to meet with you for a confidential discussion.
A general overview of emotions that you may experience:
- Grief – when we have children we can’t help but envisage what our potential lives will look like including our hopes for the family’s future. You may grieve at the possible loss of this future vision. It is important that you recognise that this is quite a normal reaction, that you are kind to yourself and allow adequate time to process it.
- Shock – a diagnosis will still shock you even if you knew that there was something not quite right. You may feel some confusion, anxiety or not fully process information in the moment. Make sure you record any important notes or questions for later. As with grief, ensure that you allow yourself time for the shock to pass. Don’t make any major decisions whilst you are in this stage.
- Fear – you may have fears about your child’s future and whether they will be able to lead a productive and satisfying life. You might be afraid of the uncertainty of how this will impact your own life and your ability to manage.
- Denial – this may be a reaction to a major shock. This is a normal self-protective process. You may feel that the diagnosis is a mistake or even get angry at the person suggesting the diagnosis.
- Loneliness – Receiving a diagnosis of ASD can feel lonely at times, especially if you do not know others in the same situation. Additionally, carers can already be quite isolated if their ASD family member has mobility issues or does not have typically developed social skills.
- Relief – there may be a sense of relief to have a diagnosis and a framework to deal with. A diagnosis can offer a starting point for many families to move forward with a strategic plan and finding suitable therapies for their child.
- Acceptance –Autism Help has a great summation of the recognition that can be reached at the acceptance stage – that your child will have a future but the journey will look different .
Possible impacts on the family
Everyone will react in their own way. We shouldn’t assume that a family member doesn’t share the same emotions as you even if they are reacting differently. Some people may take longer to process the information than others.
There may be comments from friends and family that the diagnosis is incorrect and it should be looked at as a behavioural or discipline problem. Provide information on specific traits and characteristics of ASD and state that you would appreciate their support. Don’t get caught up in other people’s misunderstandings of your child’s behaviour.
For tips on how to share the diagnosis with family and friends, see the online resources below.
Ways to move forward
- Take time to absorb the news – a few days or weeks to orientate yourself.
- Arm yourself with information. Research the diagnosis through your healthcare provider, internet and the Autism NT resource library,
- Seek out people in a similar situation such as at an Autism NT parent support group.
- Practice self-care and contact carer support services.
- Make a plan for how you are going to manage the next stage of your journey. Chunk it down into manageable steps so you don’t get overwhelmed.
- Autism Speaks – https://www.autismspeaks.org/what-autism/autism-your-family
- Positive Partnerships – http://www.positivepartnerships.com.au/reactions-diagnosis-autism
- Raising Children Network –http://raisingchildren.net.au/articles/autism_spectrum_disorder_diagnosis.html
- Synapse – http://www.autism-help.org/family-handling-diagnosis.htm