How do I tell my child they have autism?
Many parents are fearful that labeling their child as having an autism spectrum disorder (ASD) will make them feel broken or that they may use their diagnosis as an excuse to give up and not try. Adults with autism have found the opposite to be true. Giving your child information on the nature of their differences will help them understand, accept, and appreciate their uniqueness. It can empower them and give them the motivation needed to overcome challenges.
While every child and situation is different, some experts say there are universal best practices on why, when, and how to talk to children about their autism diagnosis. Consider using these helpful tips and tools to guide you through introducing your child to the diagnosis of autism.
Why should I tell my child they have autism?
You may have several fears if you tell your child (and others) about the autism diagnosis. You may fear your child will not understand or they may lose some of their options in the life or become upset or depressed when they learn they have a disability. These issues and others may or may not surface whether the child is told about the diagnosis. All issues can and should be addressed. Should not all involved, including your child, be given this vital information since the diagnosis will affect various aspects of their life?
Consider the stories of many individuals with autism who were not told or not diagnosed until they were adults. Not understanding others or how to interact in social situations resulted in ridicule and isolation for many. Some adults with autism share how they felt they were a disappointment and failure to their families and others but had no idea why they failed or how to do better. Given correct information about their diagnosis and differences, along with support, many of these individuals explain they have become successful.
It is important for children to know they are autistic. Kids do sense that they are different, but like all children at developmental stages, they may come to the wrong conclusion about their perceived differences. Most children are relieved to hear that there is an explanation for these differences. Knowing about their diagnosis can reassure them and “normalize” things, allowing them to understand they are normal and there are others like them who share similarities. Self-knowledge equals self-acceptance, self-esteem, and self-advocacy. Even if your child does not ask or verbally express concern about being different, they may still be thinking those thoughts. We want all children to have a voice and the only way they can really have a voice is if they understand who they are.
When should I tell my child they have autism?
Parents often get anxious about how or when to tell their kids about their autism diagnosis and put off having this conversation with their child when it is better to have the discussion as soon as possible. If you hold off on telling your child they have autism, there is a good chance they will hear it from someone else, or eventually figure it out on their own. Withholding this information from your child may take away the opportunity to provide your own explanation and can also seem like you are “trying to hide” something, which can leave your child feeling betrayed and ashamed.
When to tell a child they have autism depends on a child’s personality, cognitive ability, and social awareness, as well as your readiness to have the conversation. This is an ongoing process, not a one-time conversation.
Many experts agree that the earlier you start the dialogue, the better. Starting early allows you to tap into kids’ accepting nature and helps break down the stigma and capitalize on the positive view that we are all different and we are all of value. If your child begins to question their challenges and differences, or ask why they must go to social skills group or one-on-one therapy sessions, it may be time to talk to them about their autism diagnosis.
It is important to keep in mind that having a child receive a diagnosis can be difficult for parents and you need to process your feelings prior to having a discussion with your child. You need to be in the right head space and able to speak to your child in a way that is going to be positive and affirming. If you feel like you will burst into tears while speaking to your child about their diagnosis, then it is not the right time to tell them. If you are still struggling to start the conversation after a couple of months, consider speaking to a health professional about your feelings.
If you decide to hold off on telling your child they have autism, it is important to continue watching for signs like withdrawing, acting out, negative self-talk, or asking questions like “What is wrong with me? Why am I different? Why is this so hard for me?” These behavior changes could indicate it is time to have a discussion with your child about their diagnosis. Some children, however, may have similar thoughts and not be able to express them well.
Many adults with an autism spectrum diagnosis express the view that children should be given some information before they hear it from someone else or overhear or see information they sense is about them. A child may believe that people do not like them or they are always in trouble, but do not know why. If given a choice, waiting until a negative experience occurs to share the information is probably not the best option.
How & what should I tell my child about their autism diagnosis?
Life is often a balancing act for parents, particularly parents of children with autism spectrum disorder (ASD). When it is time to discuss your child’s autism diagnosis with them, it can be difficult to know how to explain the challenges of autism while still preserving their self-esteem. It may also be tricky to prevent a child from using an autism diagnosis as an excuse for every poor grade or instance of inappropriate behavior.
Before having a discussion with your child, do your research. Connect with other parents through support groups, and find books about autism for adults and children. Research information on the websites of reputable autism organizations and read information from the perspective of people with autism.
Set the stage for the conversation even before the assessment takes place. You would not say, “we’re going to assess if you’re autistic,” but you might say, “we’re going to see some people to get an idea of how your brain works.” Then after the assessment, you can share the results with your child. Once you are ready for the conversation, a simple way to open it is by mentioning the assessment process. You can start with something like, “you know how you did those special activities? We have found out that your brain works a bit differently. It is called autism.” Consider explaining how autistic and neurotypical brains work differently by using an analogy like Mac and PCs: “they just work a little bit differently, but it doesn’t mean that one is any less than the other.”
It is important to stay positive when talking to your child about their autism diagnosis. Autism spectrum disorders are complex and everyone with a diagnosis is unique. Explaining an autism diagnosis should be individualized and meaningful to your child. As you begin, it can be difficult to decide what and how much information to share. If your child has asked questions, it will give you a place to start. Make sure that you fully understand what they are asking. Have a conversation when your child is calm and happy. Keep the discussion light and casual. Think about having a conversation where great discussions usually happen in your family – around the dinner table, a long car ride, or curled up in bed.
If your child is diagnosed at an early age, say a toddler or preschooler, integrate autism into everyday conversation right from the start. You can do this while attending events for children with autism or watching TV or reading a book that features autistic characters. It is as simple as saying, “Julia from Sesame Street is autistic, like you.” Rather than avoiding the word autism, it just becomes a part of everyday family life.
Another option is to start by talking about strengths, challenges, and differences in general. A positive attitude about differences can be established if you start as early as possible. Mention these differences of autism in the context of your child’s strengths and challenges or by highlighting similarities and differences to others like siblings and classmates. You want to help your child understand that everyone has highs and lows in terms of abilities and interests. You can say something like, “autism is a word that describes some of the strengths and challenges that you have,” or “you know how it’s hard for you to talk to some of the kids at school, or you feel a little bit awkward, or you’re not sure why they do the things they do? It is because of the way your brain works, and that means that you follow different social rules and have a unique way of communicating than some other kids, and that is called autism.”
Everyone is unique with their likes and dislikes, strengths and weaknesses, and physical characteristics. Differences are discussed matter-of-factly as soon as your child or others their age understand the simple concrete examples of differences. The more naturally it is brought up in conversation, the better. This allows them to become a part of who they are and helps them see they have differences and some challenges with those differences. Follow up on this approach by explaining what autism is by drawing on the diagnostic criteria. For instance, if you are talking about a social challenge your child has, say something like, “autism is difficulties with social communication like eye contact and conversation. Do you think you have difficulties with those things?”
Follow your child’s lead and keep it age-appropriate. Most children may need minimal information to start. More information can be added over time. Talking to your child about autism is like talking to them about the birds and the bees, it is a process. Be ready for your child’s questions. Some of the common questions are “how did I get it?” “is it contagious?”, “will it go away”? Questions like this are an opportunity to explain to your child they were born with autism, all kids’ brains develop differently and while it will not go away, there is a lot of support and help for their challenges. Remember, it is ok to not have all the answers. You can say something like, “I’m not sure, let us research it together,” or “give me a few days and I will get back to you with an answer.”
Be prepared for your child’s reaction. From relief and indifference to shock and confusion to sadness and anger, kids can have a range of emotions when they hear they have autism.
Negative self-talk like, “this is why no one likes me,” may come up during the conversation. It is okay to say something like, “these are big feelings, and it must feel kind of crappy right now,” but try and bring the conversation back to how everyone is different and has unique strengths and challenges. You can also mention and even show videos on how there are all sorts of famous and successful people with autism, such as Greta Thunberg, Temple Grandin, and Albert Einstein.
Again, be as positive as possible. Your positive attitude and the way you convey the information are important. To make what you discuss with your child meaningful, you can write down key points and tell them that others with this diagnosis also have some of the same questions and experiences. Let your child know that there’s help for their challenges. For instance, if they have difficulties with following instructions, you can tell them about one-on-one ABA therapy, or if they struggle to make friends you can mention social skills group therapy. You could ask if they would like to find more information by researching online, reading books, watching videos, or talking with other people. Tell your child about the autism community and the numerous opportunities to connect with other children who have autism. If asking your child if they want information is likely to get a “no” response, you may choose not to ask. However, tell them that you will be looking for information.
Keep the conversation going after you have told your child about their diagnosis. You can do this by first asking them how they are feeling after the first conversation or if they have any questions and then checking back in with them every week or two to see how things are going.
As time goes on, you can look for incidental opportunities to bring up autism. Keep an eye out for stories about people with autism in the news or on tv and bring them up at the dinner table. Keep a good balance by weaving autism into as many conversations as possible and not letting it slip away from your child’s awareness, but not trying to talk about it every day and dwelling on it.
If your child has been diagnosed with autism, contact The Behavior Exchange at 972.312.8733 or email enroll@behaviorexchange.com to request an initial consultation. We firmly believe that every child with autism has the potential to lead a full, wonderful life.
The Behavior Exchange is a Behavior Health Center of Excellence® and an in-network provider.
