Talking to Your Child About Their Diagnosis By Monica Fyfe, MFT, BCBA, RPT-S
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In my private practice, I have the privilege of working with fantastic children, teenagers and their families. They all display many strengths including their imagination, passion, determination, creativity and positive high energy.
Many of them often begin their counseling journeys with similar goals such as:
To improve their lowered self-esteem and self-concept,
Strengthen their friendship skills and social confidence,
And Learn how to improve their awareness of their individualized self-regulation systems to do their best in all areas of life including home, school, work and friends.
Many of the children or teens who have these types of goals often have something in common. Their progress could be greater and deeper if they possibly knew, understood and could give a name to their own diagnosis and its effects in their lives. That is why I believe creating a safe space to initiate “A Talk to Discuss your Child’s Diagnosis” between parent and child (and sometimes a trained clinician) should occur when appropriate, and not be kept secret, hidden only to the child, or greatly delayed.
I find that in our society, children are often engaged in various treatments & interventions, take medication, have conflictual family relationships, feel socially isolated or rejected from peers and more… yet are not given the information and tools about how “their mind works” and that “having a different kind of mind” from others, is just fine, and in fact a positive thing.
Children are aware of their strengths and weaknesses in relation to their siblings and peers instinctively, but without a clear structure of how to think about it, they are left to dangerously imagine their own reasons for these differences such as “I am mental, I am crazy, I am weird, I am not understood, I feel alone.”
For the purposes of this discussion, I would like to focus on ASD, Autism Spectrum Disorder and ADD, Attention Deficit Disorder. However, parents are encouraged to use the principles below and apply them to various diagnosis discussions with your own child or teenager. You will want to adapt accordingly for your child’s specific diagnosis (including medical and/or mental health related), language and comprehension ability, age & developmental level, and always to your own genuine family style & culture.
Some of the reasons I often hear from parents about why they have chosen not to disclose a diagnosis to their child may include:
“They are too young to know.”
“They won’t understand or care.”
“They may get better or grow out of it.”
“They might use it as a crutch for every trouble they experience.”
“We are scared of their reaction and how they will feel about themselves.”
“We don’t want others to treat them differently.”
Most practitioners and educators would agree that even if these concerns are valid, it is still more helpful to the child to share some information with them to instill some self-awareness and understanding that can combat possible negative self-concepts such as shame, anxiety, inferiority, troublemaker, not accepted for who they are, and feeling misunderstood.
Talking about their diagnosis gives your child a valuable chance to ask questions. It may also be relieving to them when they learn to normalize and accept the special ways they experience life. It also helps your child see why treatment is helpful, so they are more likely to buy-into & take an active part in their own treatment and advocating for their own goals.
Temple Grandin is famously quoted to say, “I am different, not less.” It is vital for all children to know and accept who they are in a safe and measured way, including their strengths and weaknesses, rather than let their inner fantasies and other people’s misconceptions, guide and determine their self-image for a lifetime. And we know that incorrect or generalized negative labels can be both be a self-fulfilling prophecy, and hard to overcome.
In addition, the reader may reflect on the following:
Greater Self-Knowledge & Self-Awareness leads to Increased Self-Advocacy and Self-Actualization which can lead to Improved Equity for your child or teen Across the many areas of Life
Milestones Autism Resources (2017) described self-advocacy as an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs and rights. We all want this for our children as parents step back, and they grow into teenagers and then young adults. However, the first important step in this process, is Self-Knowledge. Your child must understand their own strengths, tastes, identity, feelings and needs as early as possible to make their own choices in life. Choices may include how to spend their free time, speaking to how they are responding to specific medication type and dosage, what qualities and common interests they are looking for in a friend or future romantic partner, what passions do they want to pursue post high-school, and more.
Without Self-Knowledge & Self-Advocacy, Equity is more out of reach:
There is also an important concept of Equality vs. Equity that affects us all, neurotypical and neurodivergent. Equality is treating everyone the same. Equality aims to promote fairness, but it can only work if everyone starts from the same place and needs the same help. Equity is giving everyone what they need to be successful. For example, Equity is very important to keep in mind for teachers as they differentiate their teaching in the classroom to meet the individual needs of all their learners. Fair is not equal, but fair is equity: receiving what an individual needs to be successful.
But imagine if your child ‘refuses to ask for help from others’, or ‘does not know what kind of tools help them learn best vs. what distracts them’ or they have ‘not practiced how to calmly and maturely self-advocate their individual needs in an appropriate way.’ What typically happens thereafter is decisions get made for them instead of with them.
Steps for Families to Consider:
When your family is ready to share this information with your child, here are some recommendations below to help begin this journey, towards a continuous process of understanding. (adapted from on online article from: Intermountain Healthcare Primary Children’s Hospital, 2018).
Work with your child at their own pace, looking for “teachable moments.”
Your child may not be ready for a full conversation about ADHD or ASD all at once. Follow their comfort and understanding level, not your own. Chunk the information into “digestible amounts” over time. Share only as much information as needed until they are satisfied in that moment. Also take into account your child’s language and learning style. Using Bibliotherapy as a bridge for this information can be very helpful. Understanding Autism Spectrum Disorder: A Workbook for Children and Teens, by Robert Jason Grant Ed.D. is a great tool for this with short chunks of information and worksheets to reflect on and complete slowly over time. (see references).
Affirm your child’s unique strengths.
Explain that everyone has strengths and weaknesses. Use yourself and other family members as examples. Always lead with strengths and what your child is good at for example “What are 3 things you believe you do well?” Or “What are some things that are amazing and unique about you?”
Validate the trouble your child has been having.
To introduce ADHD for example, focus on what your child has said they’re concerned or frustrated about, for example “You know how waiting your turn or wanting to share all your answers in class can be hard for you…”
Gear the conversation to normalization with inclusive language.
Share with your child that “We all have a different kind of mind. Some of us have Math Smarts and Lego Smarts, Some of us have Music Smarts and Drawing Smarts.” No kind of mind is better or worse, just different. Drawing a picture of a brain/mind and having your child map out and diagram these parts of their brain is a helpful play therapy intervention. Have all family members participate to enhance perspective taking for deeper learning throughout the family, so the child is not alone. Special note: “THE WIMPY KID DO-IT-YOURSELF BOOK” has a fun example of this brain activity template to utilize. (See references below). You can also talk about brain science a bit more depending on your child/teen’s age or interest, such as “right brain, left brain concepts, and concepts of feeling fully integrated between brain stem, limbic system and our neo-cortex and PFC.”Assess what your child knows about their diagnosis already to help clarify any misconceptions they may have.
Ask your child, “What do you know about ASD? Listen and allow your child to share openly. Listen for any misperceptions or inaccuracies, don’t overly correct or critique. Come for a curious stance before slowly and confidently providing more information and accurate descriptors about their diagnosis, in age-appropriate terms. A comprehensive resource for parents and professionals is available for reference at the Centers for Disease Control (CDC) Autism page at: www.cdc.gov/ncbddd/autism and for ADD at The American Academy of Child & Adolescent Psychiatry at: https://www.aacap.org/aacap/families_and_youth/resource_centers/adhd_resource_center/Home.aspx
Discuss your child’s fears.
Your child may have fears about their diagnosis. It is important to provide information to your child in a developmentally appropriate way and dispel any myths. Validate your child and let them know it is okay to experience a variety of feelings regarding this information including: Happy, Sad, Unique and Special, Confused, Shocked, Worried, Unsure, Neutral, Scared. If your child is worried and asks, “How did I get ASD?” it is important that your child does not blame their parents or blame themselves. Instead, give a matter of fact response such as, “Some people have ASD, some people don’t, some people are right-handed, some people are left-handed, it is what makes everyone special and unique.”
Regulation.
Discuss settings and triggers that leave your child feeling dysregulated and share ways each family member uniquely moves towards self-regulation with support from people, objects, settings and mindfulness and relaxation. We all have our windows of tolerance and thresholds for hyper-arousal and hypo-arousal states. Engage your whole family in an experiential exercise to find out how we all respond to stress, distraction, and challenges to our senses. This helps the child feel not alone and that everyone has needs in the family that we can all attend to and support. Demystifying Autism by Heather McCracken is a great book for this, (see references).
Emphasize positive goals.
Talk about the benefits of treatment and meeting their goals, such as, “having more free time if homework time can run smoother, getting along better with friends, feeling more confident in class, sports or clubs or enjoying more privileges.” Describe treatment as a way to help your child be more in control of their thoughts, feelings and behaviors.
Medication:
If your child takes medication, explore what your child knows about it, what it does and does not mean to them, and stay collaborative and open with your child so that they will openly share how they are feeling and responding to it, with good reliability and fidelity.Share Positive Examples:
There are many well-known, famous and successful people that can inspire your child. You may want to explain how a diagnosis such as ADD or ASD can be helpful in certain careers that require strengths such as: moving from task to task quickly, thinking deeply, having great focus on solving a specific problem, having affinities for a special interest or passion, and showing creativity and ingenuity beyond limits.Share some famous and successful people who have ADHD or ASD (*The people listed above have either been diagnosed with ADD or ASD, or they are believed to possibly have these diagnoses based on their symptoms.)
Possible ADHD/ADD:
Simone Biles (Olympic gymnast)
Jim Carrey (actor and comedian)
Albert Einstein (scientist)
Bill Gates (founder of Microsoft)
Tim Howard (professional soccer player)
Adam Levine (singer)
Howie Mandel (comedian and TV host)
Michael Phelps (Olympic swimmer)
Possible ASD:
Satoshi Tajiri (Creator of Pokémon)
Dan Aykroyd (Creator of Ghostbusters)
Hans Christian Andersen – (Children's Author)
Benjamin Banneker – (Almanac author, surveyor, naturalist, and farmer)
Susan Boyle – (Singer)
Tim Burton – (Movie Director)
Lewis Carroll – (Author of “Alice in Wonderland”)
Henry Cavendish – (Scientist)
12. Focus on Positive Strengths during Wrap Up:
Lastly encourage your child to make Goals of what they would like to work on moving forward. Explore their own VALUES with them, that may be different than others in their family, and can change over time, and that’s okay. Keep an open dialogue where they can come to you with questions or concerns at any time in the future. Share books and videos to supplement the discussion with great visual examples and stories through bibliotherapy for your child. For example, try Kathy Hoopmann’s books (see references) that focus on positive strengths and some challenges shared in a safe and indirect way using fun photographs of cats and dogs, very adorable!
I hope this information has been helpful, inspiring and empowering to parents and caregivers, schools and community members. Self-Knowledge of why we all do what we do, only deepens our understanding of our choices in life. And sharing it through self-advocacy helps us share how we can be our best; while in turn, learning and developing greater empathy about the many differences and similarities in us all.
By, Monica Fyfe, MFT, BCBA, RPT-S
Monica Fyfe is the Founder & Executive Director of OUR VILLAGE, a 501 (c)(3) non-profit agency that provides evidence-based Play and Social skills groups to children, teens and young adults. She is also a mother of two and grew up in the South Bay! Monica is a Licensed Marriage and Family Therapist, #47541, Board Certified Behavior Analyst, and Registered Play Therapist-Supervisor. Monica is an Adjunct Professor at Pepperdine University in the Graduate School of Education and Psychology and an Instructor in the UCSD Play Therapy Certificate Program. Monica works in Redondo Beach, CA at her private practice business called Play 2 Learn. Please visit these websites for more information at: www.p2lfamilytherapy.com and www.ourvillageslc.org
References & Resources for Families:
The Milestones Autism Website lists several self-advocacy skills by age that children and teens with ASD should strive to accomplish: http://milestones.org/individuals-with-asd/self-advocacy/
© 2018 Intermountain Healthcare, Primary Children’s Hospital, “Let’s Talk About ADHD: Talking with Your Child.” https://intermountainhealthcare.org/ext/Dcmnt%3Fncid%3D521377860
The Wimpy Kid: Do it Yourself Book “What’s in Your Brain?” https://diary-of-a-wimpy-kid.fandom.com/wiki/The_Wimpy_Kid_Do-It-Yourself_Book
Demystifying Autism: The Friend 2 Friend Simulation Game Program by Heather McCracken, Friend 2 Friend Social Learning Society © 2009. https://www.friend2friendsociety.org/autism-demystification/
American Academy of Child and Adolescent Psychiatry (AACAP) (search for ADHD resource center)https://www.aacap.org/aacap/families_and_youth/resource_centers/adhd_resource_center/Home.aspx
Centers for Disease Control (CDC) Autism page at: www.cdc.gov/ncbddd/autism
Understanding Autism Spectrum Disorder: A Workbook for Children and Teens, 2nd Edition, by Robert Jason Grant Ed.D. AutPlay © Publishing, (2018). https://www.autplaytherapy.com/store/
Driven to Distraction (Revised): Recognizing and Coping with Attention Deficit Disorder by Edward M. Hallowell M.D. & John J. Ratey M.D. Anchor House, A Division of Random House, Inc. New York (2011).
The ASD Workbook, Understanding your Autism Spectrum Disorder, by Penny Kershaw © 2011.
Different... Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger's, and ADHD (Revised & Updated) by Dr. Temple Grandin, New Horizons, Inc. USA (2020).
All Cats Have Asperger Syndrome by Kathy Hoopmann, Jessica Kingsley Publishers, London (2006).
All Dogs Have ADHD by Kathy Hoopmann, Jessica Kingsley Publishers, London (2008).
Smart but Scattered: The Revolutionary "Executive Skills" Approach to Helping Kids Reach Their Potential by Peg Dawson and Richard Guare, The Guildford Press, New York (2009).
Taking Charge of ADHD, Third Edition: The Complete, Authoritative Guide for Parents by Russell A. Barkley. The Guilford Press, New York (2020).
