A diagnosis of autism spectrum disorder (ASD) in a child can be an overwhelming experience for parents. One of the first questions many parents have in such situations is how – and when – to tell the child, siblings, friends, family members, and other loved ones about the diagnosis. Parents often fear misunderstandings, awkwardness, and judgment from others upon sharing news of an autism diagnosis. They can also have reservations about the “correct” time and way to discuss an autism diagnosis with their child. Knowing the facts about ASD, and knowing when and how to communicate a diagnosis to others, is key in establishing a supportive base for you and your child.
Learning About ASD in Your Child
Gathering information about autism spectrum disorder is the first step towards telling others. This includes general-purpose information, such as common signs and symptoms of the condition. Crucially, it also involves gathering information on how ASD presents uniquely in your child. ASD is a condition with a wide variety of presentations in different people. Take note of the particular signs and symptoms you have noticed in your child and be ready to communicate them to others. Every individual with ASD has their own experience with the condition, along with their own strengths and challenges. This important information needs to be conveyed to others when sharing a diagnosis or introducing a new person into your child’s life.
When and How to Discuss ASD With Your Child
Parents may wonder about the appropriate timing to discuss a diagnosis with their children, who may be too young or otherwise have difficulty in understanding their condition. The right time to discuss ASD with your child depends on their age, maturity, and capacity for understanding. In “ASD Diagnosis: What Do We Tell the Kids?”, authors Teresa Foden and Connie Anderson, PhD, offer a number of helpful suggestions. First, they note that while many children with ASD are shocked upon learning of their condition, they are often relieved to find an explanation for their difficulties. Furthermore, they note, ASD becomes a part of these children’s identities – not something about which to be ashamed.
Foden and Anderson advise taking into consideration your child’s personal experience with ASD’s symptoms, along with their ability to understand broad concepts, like the idea of a developmental disorder. Tony Attwood, PhD suggests that any explanation should focus on “information that is relevant from the child’s perspective,” such as how autism may affect success in making friends or learning in school.[i]
Foden and Anderson advise giving younger children a simple, broad statement that communicates the important facts about ASD. Parents can communicate that their child thinks or experiences the world differently compared to others. This framing, the authors note, should stress the positive. Parents can emphasize how ASD can play a role in the development of a unique and vibrant personality, along with special interests and talents. At the same time, the authors stress that it is important to communicate that ASD presents challenges that your child may have already noticed. Make it clear that you accept and support your child unconditionally, and that there are many others facing similar challenges in the world. Parents should also communicate that treatment will help their child face less difficulty and frustration in communicating with others and in daily life in general. For more on discussing ASD with your child, including how to approach the discussion with siblings, please see here.[ii]
Explaining ASD to Family and Friends
Family members and friends are vital for supporting both you and your child with ASD. They may be unfamiliar with the details of ASD, or have preconceptions about how people with ASD act or experience the world. If they are unfamiliar with the condition, helping them understand ASD is often necessary. Be willing to explain the basics of autism to them. Mention that it is a genetic, lifelong developmental disorder with varied presentations, often with effects on social skills, repetitive behaviors, and sometimes cognitive and motor development. Parents should also be ready to correct common misunderstandings, such as the mistaken idea that everyone with autism acts the same way.[iii]
It is also important to communicate your child’s unique strengths and struggles with ASD. This involves highlighting areas where your child may need help or may not adhere to traditional social conventions. For instance, it may be helpful to make family and friends aware that eye contact is difficult for your child, or that your child may experience sensory processing issues which require a calm environment. It is also valuable to tell friends and family how to approach communication with your child, noting what styles work and which are best avoided.
The Importance of Asking for Support
Asking for help from family and friends is crucial, and it can take many forms. Help in the form of babysitting or offering an ear to listen in times of stress is always welcome. Your friends and family can also help in the interactions they have with your child. The more that family and friends understand about your child and their experiences with ASD, they more they can be supportive and helpful in your child’s growth. In a helpful guide on explaining ASD to family, the author suggests encouraging questions from family members, as well as giving them strategies to aid communication with your child. Your child may have a unique interest they like to focus on, or a favorite style of learning via a visual aid. Encourage family and friends to make use of these traits in their interactions. The author also advises stressing the strengths that ASD encourages in your child.
Speaking With Other Parents
When discussing your child’s autism with parents of your child’s friends, it is good to keep the same general ideas in mind as when discussing with anyone else. Make them aware of your child’s challenges, as well as any communication or behavioral strategies that work for them. Be sure to include anything that can help them communicate with their own children how to best understand and interact with your child. Connecting with other parents can be a wonderful source of support, especially in the form of online support groups for parents or families of people with autism.
Communicating an autism diagnosis is ultimately about making needs known. These include the needs you have as a parent for support as well as the needs of your child for understanding, acceptance, and accommodation. Addressing misconceptions about autism may be an ongoing process, and family, friends, and loved ones may not know how to act at first relating to ASD or your child. However, patience and a willingness to steer people towards a greater understanding of autism can help spread awareness of the condition and help you feel supported as your child develops and grows.
Spectrum of Hope has over a decade of experience in providing compassionate, research-informed autism treatment services in the greater Houston area. We will help your loved one work past any developmental challenges they are experiencing, and acquire the functional skills they need to succeed in communication, academics, and daily living. For more information, please call us today at (281) 894-1423.
[i] http://aspergers.ca/wp-content/uploads/media-library/article/pdfs/should_you_explain_the_diagnosis_to_the_child.pdf
[ii] https://iancommunity.org/cs/articles/telling_a_child_about_his_asd
[iii] https://childmind.org/article/sharing-an-autism-diagnosis-with-family-and-friends/