New book Talking With Your Child About Their Autism Diagnosis is a guide to aid discussion and understanding between parents and children. In this blog, edited and adapted from Chapter 3 of the book, author Raelene Dundon breaks down the reasons why she recommends being open and honest with your child about autism.
Is it important to tell a child they have autism? Do they need to know? Will they figure it out for themselves? What does the future look like if they don’t know?
These are questions that parents of children with autism may ask themselves many times from the time their child receives their diagnosis, and the answer is not a straightforward one. Depending on who you talk to, there are different opinions on whether it is necessary to tell your child about their autism or not.
When I talk to parents about this question, some say to me that they don’t feel it is necessary for their child to know, because their child is doing well, and they are concerned that telling them they have autism might jeopardize their progress. Other parents feel it is a natural thing to talk to their child about their autism and how it influences their life in both positive and negative ways.
I believe that telling your child about their autism is about providing a missing piece of a puzzle. Without that piece, the puzzle is incomplete. For a child with autism, giving them information about their diagnosis gives them the opportunity to have a deeper understanding of who they are.
When thinking about whether to tell your child about their diagnosis, the following factors will be important to consider.
Autism is part of who they are
I think it is important for children who do receive a diagnosis to know and understand that autism is a part of who they are as a person. They need to know that there is something different about the way their brain works, that it means that they sometimes see and interpret things differently, and that it is not something they need to change about themselves, because it is the way they are made.
This becomes even more important for children to know as they grow older and are developing a sense of identity. As children grow older, they look for similarities between themselves and others, comparing their abilities and achievements with their peers and taking cues from the important adults in their lives to assess their self-worth. When children have difficulty relating to others, find themselves getting into trouble for their behavior but don’t really understand why, or feel their abilities don’t compare with their peers, their self-esteem and self-worth can suffer.
Giving children with autism information that explains why they may have these challenges, and helping them to be aware of autistic adults whom they can look up to, can assist them to develop a more positive view of themselves and their abilities.
Knowing can reduce the fear that something is wrong with them
A lot of children with autism reach a point when they know that they are different to their peers. Some children – particularly children in mainstream settings – may start to worry that there is something wrong with them and question why they are different. When questions are ignored or are not honestly answered, or the child is too afraid to ask, the child will often seek information themselves, which may lead them to the wrong conclusions.
Receiving an explanation of why they are different can be a big relief for some children. It can help them really understand their behavior and thinking, and why they may struggle with some things, and reassure them that there is not something terribly wrong with them. Further, their differences do not have to be seen as negatives. While their autism may be the reason why their thinking sometimes gets stuck or they sometimes have trouble having a conversation with someone, it is also the reason they have an amazing memory for things they are interested in or notice some things more than other people. These qualities or behaviors become clearer and make sense to them once they understand their diagnosis.
A parent telling their child is better than someone else telling them
Many parents find themselves feeling pushed to tell their child about their diagnosis due to another child finding out, and the parents not wanting their child to hear about it somewhere else first. I have had many conversations with concerned parents over the years – parents who are stressed because another parent or sometimes a teacher has revealed a child’s diagnosis to someone else; meanwhile the child doesn’t know about their autism because their parent was waiting for the ‘right time.’ When this occurs, the conversation with the child can end up being reactive and rushed, rather than the parent having time to really consider what information they want to share and how to share it.
Preparing to tell a child about their diagnosis before it is shared with others provides parents with an opportunity to present information in a clear, positive and age-appropriate way, and makes it less likely that misunderstanding or distress will occur.
It can give them a place where they belong
For a child who may feel like they never really fit in, knowing that they have autism and that there are other children like them, can make a big difference to their self-confidence and self-esteem. Obviously not all children with autism are going to get along with each other, just like not all neurotypical children get along, but finding someone with similar interests and perspectives, and knowing that others have similar challenges, can help children feel that they are not alone.
With the knowledge that they have autism, children and adolescents can seek out peers to connect with in social groups and recreational activities, creating networks of like-minded individuals who can encourage and support them. Opportunities to meet and be mentored by autistic adults, which are often offered by support organizations, can also assist children to look toward possibilities for the future.
While there is no guarantee that a child will accept their diagnosis immediately, given time, support and information, it is likely that they will develop an understanding of what having autism means for them. With that understanding can come a stronger sense of self and a clearer picture of where they fit in the world, helping them feel confident to strive to reach their potential.
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You can also find Raelene Dundon’s own website & blog here.