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:
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).
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
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).
(THIS ARTICLE BLOG WAS SHARED WITH SOUTH BAY FAMILIES CONNECTED AND FEATURED ON THEIR SPECIAL NEEDS RESOURCE PAGE FOR THE COMMUNITY)