Dear CASD families and friends,
May’s Center for Autism Spectrum Disorders (CASD) Chat (by Srishti Rau, Ph.D., with the support of research assistant Jessica Smith, B.S.) focuses on providing families resources and strategies for disclosing an autism diagnosis to youth. 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, Ph.D., 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. 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.
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 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 Aspergers 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 people with autism and people with autism who have just learned of their diagnosis to the community of people with autism. 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
Profiles Celebrating Neurodiversity
Lei Wiley-Mydske is an activist who is autistic, a wife and a homeschooling mom. After being misdiagnosed for
many years, Lei was diagnosed with autism when she was in her 30s. Lei is also the director and founder of the Ed Wiley Autism Acceptance Lending Library, which serves the communities of Stanwood & Camano Island, WA by lending books and materials that promote the ideas of autism acceptance, social justice, disability rights and neurodiversity. The Ed Wiley Autism Acceptance Lending Library is also a wonderful source of information on explaining autism to your child. Check out the Neurodivergent Narwhal series.
She is an administrator on the popular Facebook page “Parenting Autistic Children With Love & Acceptance " In her spare time, Lei enjoys "reading, painting, cooking, hiking, science fiction, comic books and just spending time with her allistic husband and amazing Autistic kid."
The Talk – Black, Autistic and Male: One Family's Experience
We would like to share an interview with a family of a college-bound autistic young adult and an accompanying reflection by Tawara Goode, director of the National Center for Cultural Competence and director of the Georgetown University Center for Excellence in Developmental Disabilities.
View the video.