Explaining autism to a child or adolescent

The value of an explanation

Our clinical experience indicates that it is extremely important that autism is explained to a child or adolescent as soon as possible after a diagnostic assessment and preferably before inappropriate compensatory reactions such as low self-esteem are developed. The child is then more likely to achieve self-acceptance, without unfair comparisons with other children, and be less likely to develop signs of depression or choose self-isolation. The child can then be a knowledgeable participant in the design of programs, knowing his or her strengths and weaknesses, and why he or she needs to regularly see a particular specialist while siblings and peers do not. The child can also experience a huge sense of relief to know that they are not ‘weird’, just ‘wired’ differently.

When and how do you explain the diagnosis?

At what age do you explain the diagnosis? Children who are younger than about eight years may not consider themselves particularly different to their peers and have difficulty understanding a concept as complex as autism. The explanation for young children will need to be age-appropriate and provide information that is relevant from the child’s perspective. The main themes will be being different not defective and the benefits of programs to help the child make friends and enjoy playing with other children and to help achieve success with schoolwork. There can be a discussion and activities to explain the concept of individual differences and autism, for example, those children in the class who find it easy to learn to read, and others who find it more difficult. Parents can then explain that there is another form of reading, namely ‘reading’ people and social situations and that we have programs to help children who have this ‘reading’ difficulty.

There are now many resources and activities to help parents explain autism and it is up to parents to decide which ones to use to explain autism to their child.

The Attributes Activity

This family activity is for children over the age of about eight years to the early teenage years. We developed the Attributes Activity to explain the diagnosis to the child and family, including siblings and grandparents. We suggest arranging a gathering of family members, including the child or adolescent who has recently been confirmed as autistic. This activity requires temporarily attaching to the wall of the room, several large sheets of paper, or using a large whiteboard divided into several sections. Each sheet of paper or section is divided into two columns, one column headed ‘Qualities’ and the other ‘Difficulties’. We suggest the child’s mother or father as the first person to complete the first stage of the activity, which involves identifying and listing personal qualities and difficulties (these can include practical abilities, knowledge, personality, and passions). After the first focus person has made his or her suggestions, the family add their suggestions. It is important to ensure that this is a positive activity, commenting on the various attributes and ensuring that there are more qualities than difficulties. Another family member is then nominated or volunteers to suggest his or her qualities and difficulties. The autistic child or adolescent can observe and participate and understands what is expected when it is time for his or her turn.

Sometimes the autistic person is reluctant to suggest or may not consider him- or herself to have many qualities or attributes. The family are encouraged to make suggestions from their perspective. There will need to be some care when nominating difficulties so that the person does not feel victimized or despondent. The following is a representation of the Attributes Activity for an autistic child.

The Attributes activity was originally published in 2007 in Tony’s The Complete Guide to Asperger’s Syndrome and subsequently used as the basis of The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions by Gloria Dura-Vila published in 2021 by Jessica Kingsley Publishers. The child or parents can choose which card describes a quality or difficulty for an autistic child or adolescent.

Parents then make comments on each quality and difficulty and then explain that scientists are often looking for patterns; when they find a consistent pattern, they like to give it a name. The name to describe your pattern of abilities is autism.

We recommend saying to the child, ‘Congratulations, we have discovered that you are autistic’, and explain that this means he or she is not mad, bad, or defective, but has a different way of perceiving, thinking, learning, and relating. The discussion continues with an explanation of how some of the child’s talents or qualities are due to autism, such as his or her extensive knowledge about lawnmowers or horses, ability to draw with photographic realism, attention to detail and being naturally talented in mathematics. This is to introduce the benefits of having autism.

The next stage is to discuss the difficulties and the strategies needed to improve specific abilities at home and school. This can include the advantages of programs to improve the ability to ‘read’ people, Cognitive Behaviour Therapy (CBT) and/or medication that can help with emotion regulation, and ideas and encouragement to improve making and keeping friendships. Parents may mention successful people in the areas of science, information technology, the arts and caring professions who benefited from being autistic (Elder 2006; Fitzgerald 2005; James 2006; Ledgin 2002; Ortiz 2008; Paradiz 2002; Santomauro 2012). As Temple Grandin, an autistic woman who has become a successful engineer, author and academic, said, ‘If the world was left to you socialites, we would still be in caves talking to each other.’ (Personal communication)

When explaining the development of autistic abilities associated with an adolescent, we sometimes use the metaphor of a clearing in a forest. The ‘clearing’ represents the development of the brain, and the emergence of plants and saplings in the clearing represents the development of different brain functions. In the clearing, one sapling grows very rapidly and creates a canopy above the other plants and a root structure that restrict access to sunshine and nutrients, thus inhibiting the growth of competing plants. The dominant sapling, which soon becomes a tree, represents the parts of the brain dedicated to social reasoning. If that ‘social reasoning’ sapling does not develop quickly and become dominant, then other trees, or abilities, may become stronger. These plants represent abilities in mechanical reasoning, music, art, mathematics and science, and the perception of sensory experiences. An autistic person often prioritises the pursuit of knowledge, perfection, truth, and the understanding of the physical world above feelings and interpersonal experiences. This can lead to valued talents but also vulnerabilities in the social world and will affect self-esteem. The child or adolescent may then see autism as an explanation of his or her talents as well as difficulties.

Who else needs to know?

After explaining autism to the child or adolescent, it is important to discuss who else needs to know. Children and adolescents may be concerned about how their peers will respond to the news and any potential negative reaction. Parents need to examine and discuss the issues surrounding disclosure, based on the advantages and disadvantages of certain people knowing, and how much information to disclose. We have found that autistic adolescents can be very sensitive to the anticipated reaction of their peers and are more reluctant to share the disclosure of autism. The child or adolescent’s opinion is respected regarding the question of whether peers should be told.

If the child does want the other children to know, there needs to be an agreement as to how widely the information will be disseminated, how it will be done, and whether the autistic child or adolescent should be present. Carol Gray has developed a program, The Sixth Sense, to explain autism to a class of children in an elementary or primary school (Gray 2002). She has designed a range of classroom activities based on learning about the five senses that are extended to include a ‘sixth sense’, the social sense, which is the perception of social cues. Peers can then discover what it would be like to have difficulty perceiving the social cues and thoughts and feelings of others, and what they can do to help someone develop the sixth sense. We now have other published resources to help explain autism to peers and siblings (see resources section below).

References

Attwood, T. (2007) The Complete Guide to Asperger’s Syndrome. Jessica Kingsley Publishers

Elder, J (2006) Different Like Me: My book of autism heroes Jessica Kingsley Publishers

Fitzgerald, M. (2005) The Genesis of Autistic Creativity: Asperger’s syndrome and the arts. London: Jessica Kingsley Publishers.

Gloria Dura-Vila (2021) The Amazing Autistic Brain Cards: 150 Cards for Positive Autism Discussions Jessica Kingsley Publishers

Gray, C. (2002) The Sixth Sense II. Arlington, TX: Future Horizons.

James, I. (2006) Asperger’s syndrome and High Achievement: Some very remarkable people. London: Jessica Kingsley Publishers.

Ledgin, N. (2002) Asperger’s and Self-esteem: Insight and hope through famous role models. Arlington, TX: Future Horizons.

Ortiz, J. (2008) The Myriad Gifts of Asperger’s Syndrome Jessica Kingsley Publishers

Paradiz, V. (2002) Elijah’s Cup: A Family’s Journey into the Community and Culture of High Functioning Autism and Asperger’s Syndrome. New York: The Free Press.

Santomauro, J. (2012) Autism All-Stars: How we use our autism traits to shine in life Jessica Kingsley Publishers

Books and resources

There are many books and resources that can help explain autism to a child or adolescent and we have provided below a list of recommended resources. Parents can supplement an explanation of autism by encouraging the child or adolescent to read fiction with a central character being autistic. Kathy Hoopmann has written several excellent adventure stories that autistic children and adolescents find fascinating, and they identify with the experiences and abilities of the autistic hero of the story.

Some of the books and resources refer to Asperger’s syndrome which before 2013 was the term used to describe autism spectrum disorder level 1. All the following books are published by Jessica Kingsley Publishers with more information at www.jkp.com

Books for primary school children

Bulhak-Paterson (2015) I am an Aspie Girl

Hoopmann (2021) All Cats are on the Autism Spectrum

Hoopmann (2013) Inside Asperger’s Looking Out

Klemenc (2013) What Is It Like to be Me?

 Books for high school children

Jackson L. (2002) Freaks, Geeks and Asperger Syndrome

Monahan F (2019) Know Your Spectrum: An Autism Creative Writing Workbook for Teens

Fiction

Kathy Hoopman’s trilogy: Blue Bottle Mystery, Of Mice and Aliens and Lisa and the Lace Maker and her science fiction novel for adolescents Elemental Island

Books for parents

Dundon R (2018) Talking with your Child about their Autism Diagnosis: A guide for parents