ASD Diagnosis Disclosure with Children

By January 10, 2022NESCA Notes 2022

By Renée Marchant, Psy.D.
Pediatric Neuropsychologist

All brains are different. Thus, there is no “one way” to disclose a diagnosis of an Autism Spectrum Disorder (ASD) to a child. The when, where, and how of diagnosis disclosure depends on the child and family’s preferences, values, and experiences. In addition, families do not have to feel alone in this process. Many families find it helpful to consult with parent support groups and professionals (e.g., therapist, neuropsychologist, speech and language pathologist, in-home ABA provider) to collaborate and discuss how to best approach diagnosis disclosure based on an individual child’s needs.

In my experience, I have found that disclosing a diagnosis of ASD to a young child is helpful when a child’s support network is integrated and involved in the process. As a family therapist, I see diagnosis disclosure as a family process and a potential to create and develop a conversation for the child and family that does not focus on identification and labeling of deficits but rather a conversation that is focused on understanding how each individual in the family thinks, feels, regulates, and relates to the world. The narratives we tell ourselves influence our well-being, and it is thus very important that children and families have a narrative or story to help guide their personal understanding and meaning of an ASD diagnosis.

Following a neuropsychological evaluation, I often provide child and family feedbacks to children and their caregivers to discuss the diagnosis. These meetings are designed to be “therapeutic feedbacks.” Here are key components of my “therapeutic feedback” sessions for “making meaning” of the diagnosis of ASD which may be helpful for some parents and providers:

  1. Normalize that all family members have unique learning styles and brains. Encourage parents and siblings to share what they know about their own learning styles of strengths and challenges. For example, a caregiver might say, “All brains are different, and I can’t wait to learn about how your brain works, how your sister’s brain works, and how my brain works.”
  2. Create a story about how the child thinks, feels, regulates, and relates to the world. Assist your child in developing a strength-based individualized narrative or story of their diagnosis, a narrative which also validates and acknowledges challenges. This can help the child and family see and understand how strengths can be used to meet challenges. The diagnosis of ASD becomes secondary to the process of describing the child’s perspective and experience – or describing their learning style. This idea stems from narrative therapy – a therapeutic treatment which helps individuals and families “edit and re-author” the stories we tell about ourselves, others, and our environment to increase well-being. It is important to remember that all stories are unique to the child and depend on the child’s experience and learning style. Examples that children and families have developed include, understanding ASD as “superpower,” “awesome awe-sism,” “data brain,” “legomaster,” “detective,” and “Ms. Feel Big.”
  3. Recognize the child as the “expert” of their experience. Many children with ASD experience heightened feelings of “being misunderstood” which can produce stress and significant emotional difficulties. It is thus very important to connect with the child’s own point of view, language, play themes, and description of their experience. Therefore, think developmentally – use play, videos/movies, books, art, or a written/visual outline (e.g., one column of “superpower” strengths and one column of “superpower” challenges). Here is an example of a book, which has been used in therapeutic feedbacks for diagnosis disclosure for some children depending on the child’s learning profile and special interests.
  4. Externalize the challenges that children experience and identify themselves. Do this by separating “problems” from the child. For example, a child I was working with identified that their “superpower” (ASD) makes them “just do it,” which in diagnostic terms reflects “impulsivity.” The family and I talked about “just do it” to create a story in which the child had a “jumpy monkey” (this child loved monkeys). This “jumpy monkey” needed “help” from the child’s “superpower” to “stop and think,” which in clinical terms means developing the child’s “impulse control.” This is a good example of how a child and family identified an ASD strength that could be used to meet a challenge.
  5. Review and revisit the conversation. Keep the conversation open and accessible to the child in every-day life. Practice normalizing and discussing every family member’s story of strengths and challenges at dinnertime, in the car, and during therapies (speech therapy, occupational therapy, psychotherapy, etc.).

These therapeutic feedback tips are just some of many. For an additional list of tips, please visit the University of Washington Autism Center’s Dr. Sarah Woods’ “Tips for Talking to Your Child About Their Autism Diagnosis.”

 

About the Author:

Dr. Renée Marchant provides neuropsychological and psychological (projective) assessments for youth who present with a variety of complex, inter-related needs, with a particular emphasis on identifying co-occurring neurodevelopmental and psychiatric challenges. She specializes in the evaluation of developmental disabilities including autism spectrum disorder and social-emotional difficulties stemming from mood, anxiety, attachment and trauma-related diagnoses. She often assesses children who have “unique learning styles” that can underlie deficits in problem-solving, emotion regulation, social skills and self-esteem.

Dr. Marchant’s assessments prioritize the “whole picture,” particularly how systemic factors, such as culture, family life, school climate and broader systems impact diagnoses and treatment needs. She frequently observes children at school and participates in IEP meetings.

Dr. Marchant brings a wealth of clinical experience to her evaluations. In addition to her expertise in assessment, she has extensive experience providing evidence-based therapy to children in individual (TF-CBT, insight-oriented), group (DBT) and family (solution-focused, structural) modalities. Her school, home and treatment recommendations integrate practice-informed interventions that are tailored to the child’s unique needs.

Dr. Marchant received her B.A. from Boston College with a major in Clinical Psychology and her Psy.D. from William James College in Massachusetts. She completed her internship at the University of Utah’s Neuropsychiatric Institute and her postdoctoral fellowship at Cambridge Health Alliance, a Harvard Medical School teaching hospital, where she deepened her expertise in providing therapy and conducting assessments for children with neurodevelopmental disorders as well as youth who present with high-risk behaviors (e.g. psychosis, self-injury, aggression, suicidal ideation).

Dr. Marchant provides workshops and consultations to parents, school personnel and treatment professionals on ways to cultivate resilience and self-efficacy in the face of adversity, trauma, interpersonal violence and bullying. She is an expert on the interpretation of the Rorschach Inkblot Test and provides teaching and supervision on the usefulness of projective/performance-based measures in assessment. Dr. Marchant is also a member of the American Family Therapy Academy (AFTA) and continues to conduct research on the effectiveness of family therapy for high-risk, hospitalized patients.

 

To book an evaluation with Dr. Marchant or one of our many other expert neuropsychologists, complete NESCA’s online intake form.

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton and Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.