When a child has autism or Asperger’s Syndrome, parents are faced with questions of whether, when and how to explain the diagnosis to their child. They may turn to professionals for guidance and support, but, unfortunately, there are no simple, step-by-step directions. Autism is not an easy topic to explain and children on the spectrum have specific learning challenges that need to be accommodated.
Should the Child be Told?
The consensus is overwhelmingly in favor of telling the child and telling him or her early on. Tony Attwood, a well-respected expert on Asperger’s Syndrome, says the following.
“The answer is a resounding ’yes.’ Clinical experience indicates that explaining the diagnosis to the child with Asperger’s syndrome is extremely important. This will help prevent the development of inappropriate compensatory mechanisms, and encourage the child to accept treatment programs.” (Attwood, 2005)
Parents often express concerns that telling their child may change the way he views himself and lower his self-esteem. However, the opposite seems to be true. Even having a basic understanding of autism/AS generally reduces the child’s fears and self-blame and can help him better understand and accept himself. It also opens the door for the child to learn strategies to cope more successfully with the challenges he faces. In his book, Freaks, Geeks and Asperger Syndrome, Luke Jackson described his reaction to being told he had Asperger’s Syndrome in the following way.
“I finally knew why I felt different, why I felt I was a freak, why I didn’t seem to fit in. Even better, it was not my fault!...Mum could have saved me a lot of years of worry because I always knew I was different.” (Jackson, 2002)
When to Explain the Diagnosis
When to explain the diagnosis will vary from child to child, but it’s important that the child has some understanding of the autism spectrum before she becomes aware and concerned about differences between herself and peers. A child with autism younger than seven or eight may not see herself as particularly different, which makes this the best time to lay some groundwork. By doing so, when she starts becoming aware, she will already have an explanation that has been framed to emphasize the positive and encourage self-acceptance.
Providing an explanation early is also important since as children grow older, they often become more resistive to hearing that they differ from their peers. When the diagnosis is explained as a result of unpleasant experiences, such as difficulties in social situations, having autism is viewed much more negatively. When presented proactively, the child can be made aware of positive aspects and empowered with the knowledge that she can learn compensatory strategies.
How to Explain the Diagnosis
However, deciding to be proactive leads to the question of how to explain such a complex condition in terms a young child can understand. Perhaps the best approach is one similar to explaining where babies come from. You begin by introducing the information little by little, in a building block manner. Explaining autism is not a one-time event where you sit down, explain things and never talk about it again. It needs to be an ongoing process that allows the child to absorb and accept the information gradually.
In deciding where to begin, think in terms of what the child needs and wants to know right now and in the foreseeable future. Whatever the age of the child, there are critical truths the child needs to understand.
— First and foremost, he or she is a unique and valued child, who also has autism or Asperger’s Syndrome.
— He or she is not alone. Many children have autism/AS.
— People are born with autism. They are not sick. You can’t catch autism and it can’t be cured with medicine or surgery.
— Some things are different for a person with autism/AS because his or her brain works a little differently.
— An individual with autism can learn strategies that can help in challenging situations.
Another key factor to consider, regardless of age, is the typical learning style of individuals on the autism spectrum. They are generally visual, hands-on learners. As Peter Vermeulen said his book, I Am Special, “Trying to talk about autism with a person with autism is a bit like trying to show a blind person what blindness is by means of drawings and pictures.” Children with autism need to be actively involved in the learning process, not merely taking the role of a passive listener.
To follow are ideas and strategies to present information about autism in a way that will engage the child as an active participant. While the activities are suggested for different age groups, they should be selected based on each child’s individual needs and ability level.
Explaining Autism/AS to the Young Child
For a child under the age of eight years (cognitively), understanding is based largely on personal experiences and observations. Therefore, when explaining autism/AS to the young child, the focus needs to be centered on autism as that child experiences it. Spotlight the specific traits of the child, not a standard list of common characteristics. Remember that the young child with autism will have limited ability to understand verbal explanations. Keep language simple and focus learning by using hands-on tasks. One of the best activities is to work with the child to create a book about himself, explaining his autism and what he can do to overcome obstacles. Depending on the child’s writing ability, the text could be prewritten with the child illustrating it, or written together with the child, or headings could be provided, with the child writing the text.
Explaining Autism/AS to the Older Elementary Child
As a child’s awareness develops, she will be able to understand autism in a more generic way, realizing that autism affects different people in different ways. Reading about others who have autism can help develop this understanding and there are numerous children’s books available written by, or about, individuals on the spectrum. These books can be particularly helpful if study guides are created to accompany them. Guiding questions can help the child focus on the character’s strengths and challenges and can encourage the reader to draw comparisons with her own strengths and challenges. As children with autism get older, they continue to be visual learners, so the use of graphic organizers and child-created illustrations can make learning more meaningful.
Activity sheets can also be created without using stories about others. These essentially make up “a study guide for understanding me.” The child can fill in and illustrate all types of information about himself, such as special interests, talents, fears, and coping strategies. Begin with worksheets that stress individual differences among all children and emphasize the child’s strengths and talents. Move gradually into characteristics of autism and coping strategies. Joining with other children with autism to share this activity and information can greatly enhance each child’s understanding of autism and provides a safe setting for developing social connections.
For the child over the age of eight years, who has just recently been diagnosed, or had not been previously told of his autism, Tony Attwood describes a method of introducing the topic called, “The Attribute Activity.” “Qualities” and “difficulties” of the child are listed, the diagnosis of Asperger’s Syndrome is introduced and explained and strategies for dealing with the difficulties are discussed. A detailed description of the activity can be found on the ahany.org website.
Explaining Autism/AS to the Middle or High School Child
Stories, study guides and worksheets can also be used with the older child by using age appropriate books and creating worksheets that match the child’s skill level. In addition, the child could research and report on autism or specific aspects of autism, either in written form or by creating a computer slide show or web page. The child could create a personal account of his life as an individual with autism, either in written form or as a video. Older students could interview one another, using a questionnaire form that explores each other’s interests, talents and challenges. “The Attribute Activity,” as described above, could also be helpful for older students who have just recently been diagnosed.
While there is overwhelming consensus that explaining autism/AS early benefits the child, there are a couple of possible negative consequences, which can generally be avoided. Some children may become preoccupied with the topic of autism, repeatedly asking questions and talking about it. The following strategies may be helpful.
— Present the information in a matter-of-fact manner.
— Keep sessions short and end each session in the same symbolic way, such as putting away specific materials. When it’s time to stop talking about autism, make it clear that attention needs to shift and direct the child to a different, high interest topic.
— Set limits on when and how long the child can talk about autism. Indicate times to talk about autism on the child’s daily schedule.
Another possible consequence can be that the child will use autism as an excuse for negative behavior or not doing tasks that are difficult. The following strategies are generally helpful. Emphasize that everyone has strengths and challenges. Frequently point out the child’s particular capabilities and talents. Teach self-help strategies. Never provide excuses for the child. Adapt tasks to match the child’s ability level and keep emphasis on what the child can do.
As a child begins to understand his diagnosis, he has taken the first step towards self-acceptance and independence. As parents and professionals, we need to recognize the importance of our task of presenting this information in a caring and effective manner.
“I Have Autism.” A Child’s First Look at Autism (Crissey, 2005). A children’s book, reproducible student book and resource guide, appropriate for young children. Super Duper Publications, www.superduperinc.com.
Asperger’s…What Does It Mean To Me? (Faherty, 2000). A workbook for developing self-awareness, appropriate for older elementary age, middle school students with high functioning autism and Asperger’s Syndrome. Future Horizons, Inc., www.FHAutism.com.
“The Attribute Activity” (Attwood, 2005). An activity for children eight and older, described in the article, “Should You Explain the Diagnosis to the Child?” www.ahany.org/ShouldYouExplainTheDiagnosis.htm.
I Am Special: Introducing Children and Young People to their Autistic Spectrum Disorder (Vermeulen, 2000). A workbook for developing self-awareness, appropriate for adolescents and adults. Jessica Kingsley Publications, www.jkp.com.
Pat Crissey has worked as a special education teacher and autism specialist for over twenty years. She is the author of numerous educational materials, including her 2005 children’s book, “I Have Autism” A Child’s First Look at Autism.
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