The Autism Conversation: Choosing What and When to Share
Overview: This article discusses how and when to talk about an autism diagnosis. It gives guidance on who to talk to about the diagnosis and what to say. Use the “Talking About Autism with Others Toolkit” to make your own plans for talking about the diagnosis. Download the toolkit at the end of this article.
An autism diagnosis can be a sensitive topic. Some people are comfortable talking about it while others are not. Similarly, some people are understanding and supportive when they learn about a diagnosis, while others are… not (those people suck in my opinion). Regardless of the situation, learning how to discuss autism is often a critical step for individuals and families. Hopefully, this article can help.
Imagine a stoplight: Red. Yellow. Green. Except in Japan, where they have blue rather than green lights. The blue doesn’t work for me. “Blue means Go” just doesn’t have the same lyrical ring as “Green means Go,” but I guess that wouldn’t rhyme in Japanese anyway… But, back to topic, imagine a stoplight with red, yellow, and green (or blue, I guess). The directions from each color can guide how and with whom you talk about autism.
Green (Blue in Japan)
● “Green” people are individuals that feel safe and are supportive, such as:
Understanding family members and friends
Teachers
Doctors
Caregivers
● What to share:
You are safe to share it all. Talk about the diagnosis. Talk about the symptoms. Talk about strengths. Talk about what it means to you. Share your feelings. Share your thoughts. Open up!
Here is an example that may help you formulate your own share:
“I have autism/my son or daughter has autism. This makes it harder to read social cues and helps to explain why I/they really like traffic lights (fill in the correct interest if applicable). Autism explains difficulty in eye contact and sometimes coming across as rude. However, rudeness isn’t the intention, it just can’t be helped at times. Autism can make it harder to control emotions; however, it also helps to focus on problem solving and complex tasks that are often too difficult for other people. At times I am very stressed about it but knowing the diagnosis and how to grow within it is so rewarding.”
Yellow
● “Yellow” people are those who could be supportive, but whom you’re not overly close with, or who you worry may be overly judgmental, such as:
Family members or friends who may challenge or react negatively to a diagnosis, but whose support is important
Coaches/Instructors who may benefit from knowing symptoms
Neighbors/Acquaintances who are around but whom you’re not close to
● What to share:
Here you should cautiously share only necessary and relevant information. You may not share the full diagnosis, but rather discuss symptoms, possibly only the more outwardly obvious symptoms and not the more challenging or private symptoms. You may share the word “autism,” or you could talk more opaquely about a social or emotional struggle. The idea is to protect yourself by only sharing information that helps navigate the relationship while also emphasizing your strengths.
An example of sharing with a Yellow light person, could be:
“I/my son/daughter at times struggles with socializing and emotional regulation. The doctor/care provider is aware of the symptoms and provides a lot of guidance and support. The symptoms can make it hard to maintain conversations and sometimes cause overly rigid thought patterns. Luckily, there are a lot of strengths and growth as well! They’re/I am also very organized, attentive, and diligent, which comes in handy a lot of times!”
Red
● “Red” people are those who are likely to judge you and/or cause hardships if they know about the diagnosis, they may include:
Strangers who you may never see again
Conspiracy-minded contrarians
People you know to be judgmental or who may engage in negative gossip
● What to share:
In the Red you want to be cautious and limited in what you share. This category is primarily strangers, people who may want to argue about controversial theories of autism (e.g., caused by vaccines), and people likely to judge or stigmatize the diagnosis. The stranger at the grocery store doesn’t need to know about autism unless you’re totally comfortable and feeling chatty. Your argumentative uncle who blames autism on parenting styles or Tik Tok doesn’t need to know about the diagnosis. This is the group of people you protect yourself/your child from. In short, if telling one of these people about the condition may cause harm or grief then don’t tell. Of course, feel free to share if you want the opportunity to argue/educate since we all benefit from the eradication of ignorance.
If you have to discuss the diagnosis with a Red person, examples of how to do so could be:
▪ “Yes, I/they struggle with some issues, but a lot of people struggle. I/they are working hard to grow just like everyone else.
▪ “We’ve/I’ve talked to doctors/therapists and are doing everything we/I can continue to improve.”
▪ “I’d rather not share about personal matters at this time.”
