Families may struggle to determine whether to disclose an autism diagnosis to a child or adolescent and how and when to do so. Clinical psychologist Marcia Eckard, PhD, notes that children as young as 8 years old can understand a diagnosis of autism spectrum disorder (ASD) Level 1. If the child is working with a therapist, their family can seek guidance and consultation from the professional about how and when to initiate discussions about the diagnosis. It is important to remember that disclosure need not be a one-time event; rather consider it a process that unfolds gradually as and when the child offers signs they are ready to learn more about the diagnosis and how it relates to them.

Initiating the diagnosis discussion

The best way to initiate the discussion of the diagnosis is to wait for the topic to come up naturally when youth provide openings (e.g., if they ask questions about feeling different or having social difficulties). Waiting for this type of opening is especially important when disclosing the diagnosis to teenagers, as they may demonstrate more resistance to the idea of being “different” relative to peers.

The amount of information families provide should be guided by the child’s age. For 8-12-year-olds, provide fewer details and present them at a developmentally appropriate level. For youth of all ages, use concrete examples from the child’s own experiences, avoiding metaphors or abstract ideas.

Celebrate the differences

It is important to emphasize and celebrate how autism-related differences can serve as strengths (e.g., the ability to hyper-focus on areas of interest, honesty). Moreover, help youth understand they are not alone in their experiences. Families can read books about individuals with ASD together, which may also serve as an opening to begin the discussion about the diagnosis.

Additional resources

Additional websites, books and articles that may be helpful for families to guide disclosing the diagnosis include:

  • “Autism: What Does It Mean to Me?: A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth with High Functioning Autism or Asperger’s,” by Catherine Faherty (2000)
  • “Finding Out About Asperger Syndrome, High-Functioning Autism and PDD,” by Gunilla Gerland (2000)
  • “Getting Started: Introducing Your Child to His or Her Diagnosis of Autism,” by Marci Wheeler
  • “You Have Autism,” by Shelly McLaughlin
  • Welcome to the Autistic Community!” A handbook, written in plain language, welcomes newly-diagnosed autistic people and autistic people who have just learned of their diagnosis to the Autistic community. It addresses the most common questions that people may have about their diagnosis, emphasizes that they are not alone, and celebrates their new identity. This booklet is available in two versions for two different age groups: Adolescent and Adult

ABOUT THE AUTHORS

Srishti Rau Srishti Rau, PhD, is a pediatric neuropsychologist at Children's National's Center for Autism Spectrum Disorders.
Jessica Smith, BS, is a clinical research assistant at Children's National Hospital.

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