Indiana Institute on Disability and Community
Getting Started: Introducing Your Child to His or Her Diagnosis ofAutism
By:
Marci Wheeler, MSW
Many parents are fearful that labeling their child as having an autism spectrum disorder (ASD) will makehim or her feel broken, or that they may use their label as an excuse to give up and not try. Adults on theautism spectrum have found the opposite to be true. Giving your child information on the nature of his/herdifferences will give them a better understanding and the motivation that is needed to drive throughchallenges.
Discussing an autism spectrum diagnosis with your child is an important issue and one for which manyparents seek advice. This article will focus on aspects of explaining your child’s diagnosis to him or her,and provide resources that can assist and guide you.
Why Tell?
Parents go through a range of emotions when given their child’s diagnosis. The hope is that you havefound support to help you in this new journey. Isn’t it just as important to consider that your child shouldalso be given information and support for understanding and coping with their new diagnosis? All childrenneed to be understood and respected. At some point, people who are successful have learned who theyare, and accept and use that information to help themselves become the best they can be in life. Childrenwith an autism spectrum diagnosis should have the chance to understand, accept and appreciate theiruniqueness by being given information about their diagnosis.
You may fear a number of things if you tell your child (and others) about the diagnosis. You may fear thatyour child will not understand, that your child may lose some of his/her options in life, that your child willbecome angry or depressed because they have a disability, that your child (or others) will use the disabilityas an excuse for why they cannot do something, or even that your child will think of themselves (or otherswill think of your child) as a complete failure with no hope for a positive future. These issues and others
may or may not surface whether or not the child and others are told of the diagnosis. All issues can beaddressed, if needed. Shouldn’t all involved, including your child, have important information since thediagnosis will affect various aspects of his or her life?
Consider the stories of many individuals with an autism spectrum diagnosis who were not told, and/or werenot diagnosed until they were adults. Not understanding others or social situations for many leads to poorinteractions with others and resulted in ridicule and isolation. Some adults on the autism spectrum sharehow they felt that they were a disappointment and failure to their families and others, but had no clue whythey failed or how to do better. Over time, the result can be low self-esteem and/or self-acceptanceproblems among other issues. Given correct information about their diagnosis and differences, along withsupport, many of these individuals explain they have become successful.
Your child may know that s/he is different, but like all children at certain developmental stages, they maycome to the wrong conclusion about their perceived differences. They may even wonder if they have aterminal illness and are going to die. They see doctors and therapists and go for treatments, but are nottold why. Even the child or adult who does not ask and/or verbally express concern about being differentmay still be thinking those thoughts. Even children with autism spectrum disorders, like all children, maysense the frustration and confusion of others and make wrong assumptions about the cause of the turmoilaround them.
When to Tell?
There is no exact age or time that is correct to tell a child about their diagnosis. A child’s personality,abilities and social awareness are all factors to consider in determining when a child is ready forinformation about their diagnosis. If older when told, they may be extremely sensitive to any suggestionthat they are different. You can look for the presence of certain signs that the child is ready for information.Some children will actually ask, “What is wrong with me?” “Why can’t I be like everybody else?,” “Whycan’t I _____?,” or even “What is wrong with everyone?.” These types of questions are certainly a clearindication that they need information about their diagnosis. Some children, however, may have similarthoughts and not be able to express them well.
Some children do not get a diagnosis until they are in their teens or older. Frequently, those who arediagnosed later have had some bad experiences that can influence the decision of when to shareinformation with them about their diagnosis. They may be very sensitive to any information that suggeststhey are different. On the other hand, an older child may already know about a previous diagnosis such asAttention Deficit Disorder, Conduct Disorder, and/or a mental health disorder of some kind. Because of thishistory with another label or diagnosis, it may be an appropriate time to share the diagnosis and someconcrete information about ASD.
Many adults with an autism spectrum diagnosis express the view that children should be given someinformation before they hear it from someone else, and/or overhear or see information that they sense isabout them. A child may believe that people do not like them and/or that they are always in trouble, but donot know why. If given a choice, waiting until a negative experience occurs to share the information isprobably not the best option.
What/How to Tell?
Staying positive when talking about ASD is very important. Autism spectrum disorders are complex.Everyone with a diagnosis is unique. It is important that the process of explaining an autism spectrumdiagnosis to a child is individualized and meaningful to them. As you begin, it can be hard to decide whatand how much information to share. If the child has asked questions, it will give you a place to start. Makesure that you understand what they are asking.
Many families have found that setting a positive tone about each family member’s uniqueness is awonderful starting place. A positive attitude about differences can be established if you start as early aspossible, and before the diagnosis is mentioned by others. Everyone is in fact unique with his or her ownlikes and dislikes, strengths and weaknesses, and physical characteristics. Differences are discussed in amatter of fact manner as soon as the child or others their age understand simple concrete examples ofdifferences. With this approach, it is more likely that differences, whatever they are, can be a neutral oreven fun concept. Matter of fact statements such as “Mommy has glasses and Daddy does not haveglasses” or “Bobby likes to play ball and you like to read books” are examples. The ongoing use of positiveconcrete examples of contrasts among familiar people can make it easier to talk about other differencesrelated to your child’s diagnosis with him or her.
Consider your child’s ability to process information and try to decide what and how to tell. For thosechildren who have a keen interest in their diagnosis and those whose reading ability is good, there arecurrently a few books written by children with an autism spectrum diagnosis that may be of interest (Hall,2001; Jackson, 2003; Krauss, 2010).
There are also many more books written by adults with an autism spectrum diagnosis. Some of thesebooks are meant to be read by any interested persons, but many are meant to be read by others with adiagnosis of an autism spectrum disorder. Authors with an autism spectrum diagnosis are reaching out toothers with a diagnosis by sharing experiences, sharing tips on life’s lessons, and helping the reader feelthat they are not alone in this journey (Endow, 2012; Finch, 2012; Soraya, 2013; Willey, 2015; Zaks, 2006).
Most children may need minimal information to start. More information can be added over time. Again, beas positive as possible. Your positive attitude and the manner in which you convey the information isimportant. To make what you discuss with your child meaningful, you can begin by talking about anyquestions that s/he has asked. You may want to write down key points and tell him or her that others withthis diagnosis/disability also have some of the same questions and experiences. Then you could ask if
they would like to find more information by reading books, watching videos, and/or by talking with otherpeople. If asking your child if they want information is likely to get a “no” response, you may choose to notask. However, tell them that you will be looking for information and would like to share it with them. Letthem know they can ask any question they want at any time they want.
Frequently, when individuals with an autism spectrum diagnosis have an opportunity to meet others withASD, they find it is an eye opening and rewarding experience. Individuals with an autism spectrumdiagnosis can sometimes better understand themselves and the world by interacting with others who havean autism spectrum diagnosis. Interacting with others on the autism spectrum can help individuals realizethere are other people that experience the world the way they do, and that they are not the only one.
There are various possibilities for “meeting” others on the spectrum. A few camps around the country offervarious programs specifically for those on the autism spectrum. Some agencies and organizations offerplaygroups for children and/or social activity groups for teens. There are also Listservs and Facebookgroups some hosted by individuals with an autism spectrum diagnosis. It is important you check theseonline forums for safety. Some conferences for parents and professionals offer sessions and other eventsfor teens and adults on the autism spectrum. Most of us can relate to an interest in connecting with peoplewho are like us.
Workbooks that provide a structured guide for the process of telling a child with ASD about their diagnosis(Faherty, 2014; Vermeulen, 2012) are readily available. The workbook format is designed to provideactivities that help organize information about an autism spectrum diagnosis as well as making theinformation more child specific and concrete. The different lessons suggest how the information is sharedwith your child. The child and a trusted adult working together can complete the worksheets. In manycases, worksheets can also be modified for different ages and functioning levels of the child who would beusing the materials.
Who Tells/Where to Tell?
Certainly circumstances vary from family to family. If your child is asking questions don’t put off answeringthem. You should be forthcoming and not suggest talking about it later. Not providing an answer couldincrease the child’s anxiety and make the topic and information more mysterious.
For many families, using a knowledgeable professional to begin the disclosure process instead of a familymember or a friend of the family might be the best option. Having a professional involved, at least in thebeginning stages of disclosure, leaves the role of support and comfort to the family and those closest tothe child. For someone with an autism spectrum disorder, it can be especially hard to seek comfort fromsomeone who gives you news that can be troubling and confusing. Having a professional whose role isclearly to discuss information about the child’s diagnosis and how the disability is affecting his/herlife canmake it easier for family members to be seen by the child as supportive. The professional discussing
information with the child about his/her disability can also help the parents understand the child’s reactionand provide suggestions for supporting their child. Having a professional involved also allows the use of alocation outside of the family home for beginning this process.
Explaining an autism spectrum diagnosis to an individual can not be done in one or two encounters. Theindividual needs time to assimilate the new information about him/herself at their own pace. It may takeweeks or months before the child initiates comments or asks questions about the new information. Theprocess of explaining an autism spectrum diagnosis is ongoing. Making the information meaningful fromthe child’s point of view will greatly enhance the learning process. A positive focus helps maintain selfesteem and an effective atmosphere for learning. There are materials available to help this learningprocess and hopefully you have others that know your child who can help support you and your child inthis process. Now, is it time for you to get started?
Resources
Dundon, R. (2018). Talking with your child about their autism diagnosis: A guide for parents. Philadelphia,PA: Jessica Kinsley Publishers.
Dura-Vila, G. & Levi, T. (2014). My autism book: A child’s guide to their autism spectrum diagnosis.Philadelphia, PA: Jessica Kingsley Publishers.
Endow, J. (2012). Learning the hidden curriculum: The odyssey of one autistic adult. Shawnee, KS: AAPCPublishing.
Faherty, C. (2014). What does it mean to be me? A workbook explaining self-awareness and life lessons tothe child or youth with high-functioning autism or Aspergers (2nd ed.). Arlington, TX: Future Horizons, Inc.
Finch, D. (2012). The Journal of best practices: A memoir of marriage, Asperger Syndrome, and one man'squest to be a better husband. New York, NY: Simon & Schuster, Inc.
Hall, K. (2001). Asperger Syndrome, the universe and everything. Philadelphia, PA: Jessica KinsleyPublishers Ltd.
Jackson, L. (2003). Freaks, geeks and Asperger syndrome: A user guide to adolescence. Philadelphia, PA:Jessica Kingsley Publishers Ltd.
Kraus, J.D. (2010). The Aspie teen’s survival guide: Candid advice for teens, tweens, and parents, from ayoung man with Asperger’s Syndrome. Arlington, TX: Future Horizons, Inc.
Soraya, L. (2013). Living independently on the autism spectrum. Avon, MA: F+W Media, Inc.
Vermeulen, P. (2013). I am special: Introducing children and young people to their autistic spectrumdisorder (2nd ed.). Philadelphia, PA: Jessica Kingsley Publishers.
Willey, L.H. (2015). Pretending to be normal: Living with Asperger Syndrome (Autism Spectrum Disorder)(Exp.ed.) Philadelphia, PA: Jessica Kingsley Publishers.
Zaks, Z. (2006). Life and love: Positive strategies for autistic adults. Shawnee, KS: Autism AspergerPublishing.
Wheeler, M. (2020, May). Getting started: Introducing your child to his or her diagnosis of an autismspectrum disorder.
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