Autism Awareness: To Tell or Not to Tell?

I have often thought that in a perfect world, a “diagnosis” would not be necessary for people with characteristics of autism, but instead, people’s needs would be met on an individual basis, and each person would be accepted and celebrated for who he or she is. We know that many factors contribute to our current inability to rely on a simple needs-drive-services model, and that the diagnosis is often both necessary and desirable for those who fit the criteria for an autism spectrum disorder (ASD).

Once our understanding of an individual leads to a diagnosis or points to the presence of ASD, often the on-going question becomes, “To Tell or not to Tell?” Who needs to know about the diagnosis? When does the individual himself or herself need to know?

The answer to this question is highly individual, and may change over time (perhaps again and again). Although there is no one answer that can work for everyone with regard to this issue, there are perhaps some guidelines that can be helpful. Some are related to my recent articles about getting a diagnosis, and person-first language:

1. Who needs to know? Primarily, it is important that people have this information if it will create a more supportive environment for the individual in question, and better empower him or her to reach their full potential. If needs are not being met and the individual is misunderstood without knowledge of the diagnosis, this would be an important time to increase understanding about ASD and how it affects him or her (and the social context, whether it is a classroom, playground, home, or workplace), as well as resources and strategies that could help.
2. Does the individual know about his or her own diagnosis? Often, a good time to provide this information to the individual is when he or she begins to question differences (why they go to therapy, why others don’t seem to want to play with them, why no one else knows the names of all the planets or the local train schedule, etc.) Be careful about setting up a situation where “everyone” knows about the diagnosis except the individual with the diagnosis!
3. How does the individual feel about the diagnosis? Some choose not to voluntarily disclose their diagnosis, while others are eager to share this information. Again, when needs are being met, it likely becomes more of a personal issue to be determined by the individual and his or her family.
4. Be sensitive to when and how the information is shared. If the individual is not aware of his or her diagnosis, or is not comfortable having it discussed in public, be sure to inform others only if necessary, and in a way that protects your own integrity and the thoughts and feelings of the person in question. It is important that the diagnosis not be used as an excuse. It is sometimes an explanation for why some things are difficult (or easy), or why a person needs to work harder (or less hard) in some areas than others, but it doesn’t excuse negative choices that they make. It should also not be used as the source of blame for all the negatives in a person’s life. In the cases where this has happened, I’ve seen people who view their diagnosis very negatively, seeing it as the source of all the things they don’t like about themselves or their lives. We can help to avoid a situation like this by watching our own attitudes that we portray toward the diagnosis and the individual with the diagnosis.

Again, this is a highly individual topic. Everyone likely has his or her own guidelines for disclosing a diagnosis to other people. If you’d like to share information that might be helpful to others, feel free to do so on our Facebook page!

Thank you all for your continued work in promoting personal and interpersonal growth—and autism awareness--around the world!