An autism spectrum disorder (ASD) diagnosis brings a mix of emotions, questions, and a clear path forward through support systems like Applied Behavior Analysis (ABA) therapy. But once you begin navigating this new chapter, another vital step arises: explaining the diagnosis to the people who make up your child’s everyday world.
Helping siblings, extended family, and friends understand autism is about more than just delivering news. Sharing vulnerable information is about building a compassionate, informed, and active village of support around your child.
Here is a guide on how to approach these conversations with care, clarity, and confidence, along with resources to support your family along the way.
Core Messages to Communicate
It is Nobody’s Fault: Make sure siblings know that nothing they said, did, or thought caused their brother or sister to have autism. Gently address any misconceptions adults may have about why someone has autism.
Different, Not Less: Frame autism as a combination of unique strengths (like deep interests, incredible memory, attention to detail, extreme creativity) and specific challenges (like processing loud noises or expressing feelings). Use language that is appropriate for who you’re talking to.
Relatable: “Different, Not Less” doesn’t mean completely different, there are still some similarities and areas they can relate. Helping identify areas can help the sibling or relative better understand and relate to your child, regardless of their diagnosis.
It’s Not Contagious: Young children sometimes worry they can "catch" autism. Reassure them that it is simply how their sibling's brain was built.
Validate Their Feelings: It is entirely natural for siblings to experience complex emotions—including jealousy over the extra attention their sibling receives, frustration, or fierce protectiveness. Validating one’s feelings, whether they are a child or adult, can go a long way in being able to have a compassionate conversation. Recognize that grandparents may feel a different set of emotions related to their grandchild and their own adult child.
Siblings
Siblings are often the closest companions to your child on the spectrum based on proximity in age and living situations. They may already notice that their brother or sister communicates, plays, or handles sensory experiences differently. Helping them understand autism fosters empathy and reduces feelings of confusion or worry.
For Toddlers and Preschoolers: Focus on simple, observable behavior. You might say, "Your brother’s brain works a little differently, which is why he plays with his toys in his own way, or why he doesn't use words yet. He still loves being near you!" Or while playing, you can label behavior you see such as saying, “She just gave you a toy! It looks like she wants to play with you!”
For School-Aged Children: Use the word "autism" directly. Explain that it’s a neurological difference—meaning their brain processes information, sights, and sounds in a unique way. Explain that everyone’s brains work differently, and that it’s cool to be able to understand a little more how their sibling’s brain works.
For Tweens and Teens: Offer more detailed discussions about how autism affects executive functioning, sensory processing, and social communication. Answer their questions honestly and invite them into the conversation. Focus on differences that make their sibling unique and special.
Extended Family and Relatives
Extended family members often have the best intentions but may carry outdated assumptions about autism. Guiding them with clear, accurate information turns well-meaning relatives into active, helpful allies.
Focus on your Child’s Unique Profile
Because autism is a spectrum, what relatives see in the media might not match your child’s reality. Skip the clinical jargon and describe how autism specifically presents in your child. For example, instead of saying, “He has sensory processing issues and social deficits,” say, “She gets very overwhelmed by loud noises, like vacuum cleaners or crowded restaurants. She also communicates best when we use short sentences and give her a few extra seconds to respond."
Give them Practical Ways to Connect
- Offer Sensory Solutions: Let them know how to create a supportive environment. For example, "Having a quiet room available during our visit can make a world of difference if he starts to feel overstimulated."
- Explain Their Style of Play: Teach them how to join your child’s play on their terms. It could be as simple as lining up cars side-by-side or enjoying the quiet fun of blowing bubbles together.
- Suggest Gift and Activity Ideas: Share a list of your child’s current interests. This gives them concrete ideas for gifts or activities to share during a visit, ensuring the interaction is built around something your child already loves.
- Provide Supportive Scripts: If your child is struggling, family members often want to help but don't know how. Share specific coping strategies or phrases that your therapy team uses, such as, "I see you're having a hard time. Let's take a deep breath together."
Model a Positive Connection
You are the expert on your child. By interacting with them as you normally would, you provide a powerful, real-time example for others to follow.
- Communicate Naturally: Speak or sign with your child just as you would at home. This is the most effective way to show others how to successfully communicate and build a positive rapport.
- Provide Consistent Support: If your child is having difficulty communicating a need or completing a task, step in with the same support you would offer in your own home. This models how to help constructively without frustration.
- Lead with Patience and Compassion: Your calm and compassionate presence sets the emotional tone. When others see you respond with patience, it encourages them to do the same, creating a more relaxed and accepting atmosphere for your child.
Remember, you do not have to explain everything to everyone all at once. Sharing your child’s diagnosis is a gradual process that unfolds over time as relationships grow and your child's needs evolve. By opening up to your inner circle, you aren't just raising awareness—you are actively creating a loving, protective, and empowering village where your child can truly thrive.
Resources:
Autism Speaks: A Friend’s Guide Toolkit
Autism Research Institute: Friends & Family- What to Say
Dr. Annie’s Bookshelf: Autism for Siblings (variety of books)
Children’s Books:
All My Stripes by: Shaina Rudolph & Danielle Royer
My Brother Charlie by: Rolly Robinson Peete & Ryan Elizabeth Peete
Benji, The Bad Day, and Me by: Sally J. Pla
Tylor’s Authentic Smile by: Rosann Matthews
Author: Valerie Zimmerman, MS, BCBA, Vice President of Clinical, Quality and Outcomes at Mindcolor Autism