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Coming to terms with a diagnosis
The fact that your child has ASD has nothing whatsoever to do with the way that you have been looking after them. The causes of autism are as yet unknown, but we do know for certain that autism is not caused by parenting. Parents of young children with ASDs are just like everyone else. Autism affects children from all walks of life and in all countries and cultures.
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You're not alone
Many other parents are going through what you’re going through and there are many who are further on in their journey. Research suggests that roughly one in every hundred children is affected by autism in the UK, and there is some suggestion that the rate might be higher than that.
The way in which a diagnosis has been made will vary from one person to another. For some it will have been a relatively straightforward process but for others it may have taken months or even years.
For some parents, receiving a diagnosis is a shock as they may not have realised that their child had ASD. For others, there may be feelings of relief following a long time of knowing that there was something different about their child.
There is no right or wrong way to feel about your child being diagnosed with ASD. Parents experience a variety of emotions around this, and these can often change on a daily basis. It is quite normal to experience feelings such as:
- sadness
- anger
- guilt
- worry
- denial
- frustration
- acknowledged and validated
- pleased or hopeful
Some families go through a process that starts with shock and an inability to do anything, and then moves through anger to some sort of acceptance. But parents of children with autism emphasise that it really helps when you reach a point at which you can begin to accept the situation.
Some families feel a huge sense of relief that the differences and challenges experienced by their child are recognised by professionals and that there is a reason and a name for them.
Different family members are likely to take a different amount of time to come to terms with the diagnosis. Difficulties may arise when people are not experiencing the same feelings, or not experiencing the same feelings at the same time. It is important to realise that individuals will feel differently, and to try and have some understanding about this. Talking about problems will often help with family understanding, but is usually only a good idea when all those involved are ready to do so.
It is important to remember that your child is still the same child they were before they received their diagnosis; they have not changed. The only change is that now you have a diagnosis you will be better able to understand your child and their needs.
Dealing with stress
Parents of children with ASD often experience a lot more stress than other parents. Having a child with ASD can be very challenging due to their needs or behaviours. This can cause tension for individuals and also tension within relationships in the family. Disagreements about the way to manage behaviours or the way to move forward can occur. Parenting a child with ASD puts an understandable strain on couple relationships. It can very difficult to find time as a couple to do the things you enjoy together.
To last the long haul, parents need to balance their own needs along with those of their child. Don’t feel guilty about spending time on your own needs, as this will ultimately benefit your child and family.
Top tips following a diagnosis
- Remember you are a very important person in your child’s life and you have needs too. Look after yourself and try to manage stress as best you can.
- Talk to someone you trust and feel comfortable with about how you are feeling.
- Don’t forget that extended family can be affected too and may need help and support.
- When you feel ready, consider contacting or joining a support group.
- Write down any questions you may have so that you can take them with you to future appointments.
- Find out as much as you can about autism. There are some books, websites and other resources recommended in this guide.
- Just remember, you are not alone.
