Who should be told about an autism diagnosis?

Answer: Receiving an autism spectrum diagnosis is a life-changing event. Now that you know, the next question becomes who should you tell? What do you base this decision on? It can be difficult to know how much information to give because you don’t want to overwhelm people yet you need to give enough information to educate and inform. There will be some trial and error in disclosing because there’s no way to predict another person’s reaction; some reactions will be positive and others will be negative. Negativity often stems from fear so an initial negative reaction can turn positive once a person is more comfortable with autism and what it’s all about.

Why tell anyone at all? Knowing about a diagnosis can lead to a better understanding of the individual by other people and get the right supports in place in an educational setting, community organization, living arrangement, or job. Caregivers, friends and extended family members can often be more understanding and effective in supporting the individual as well as the parents.

Disclosure goes beyond telling another person that one has an autism spectrum disorder (ASD). It involves sharing information with another person that may discredit or stigmatize the person with ASD or change the relationship with the person who received the information. It’s not enough to simply tell the facts about autism. For understanding to happen, disclosure must include personal information about how ASD affects the person, their strengths, their challenges, and how having an ASD affects their daily living.

Author Liane Holiday Wiley who has Asperger Syndrome gives the best description of the three groups of people that one discloses to.

First Group – People That May Need to Know

• Person has regular contact in such a way that interactions with them are affected by ASD (babysitter, teacher)Supervisor at work
• Co-workers
• Close friends
• Close family members

Second Group – Frequent Contact Group

• Family member, friends, classmates, teachers that one sees but not regularly enough that the ASD might create a problem

Third Group – Do Not Need to Know

• People who don’t have a personal or working relationship with the person with ASD
• They could be cashiers at a local store, neighbors, postman, acquaintances

Here are some of the questions a person should ask when considering disclosure:

• Who am I going to tell?
• Is this person ready for the discussion? Is my diagnosis affecting the relationship?
• What underlies this judgment to disclose?
• What changes am I looking for after the disclosure?
• Are significant others aware of the diagnosis? How have they reacted?
• How will I initiate the discussion?
• What are the benefits to me and to others?
• What are the potential risks or negative consequences?
• How will I tell people what the diagnosis means?

Tell people who can be trusted, have the person’s best interest at heart, and can keep the information confidential. The need for self-advocacy can also be the basis for disclosing a diagnosis. For example, a university student may need extra time to take an exam due to anxiety issues or poor handwriting skills. The professor may be able to make some accommodations like allowing the exam answers to be typed on a laptop or allotting extra time for an exam. Most people are understanding when they know the circumstances involved.

Disclosing to a close friend may be helpful in explaining certain behaviors or needs. In turn, the close friend may become an advocate for the person on the spectrum.

Ideally, it’s best if the person on the spectrum can do the disclosing because they are most aware of their issues and know themselves best; however, not every person is self-aware so it may be more appropriate for another person who knows the person with ASD to set the stage for disclosure or do the disclosing itself. Autistic people often have anxiety issues or difficulty expressing themselves in stressful situations. This is where a support person can be helpful.

Disclosure can be a positive thing because it can make a good change in a relationship, end stereotypes, and get the right supports in the home, community or workplace. It’s heartbreaking to see a person fail all because no one knows they have ASD and the autistic person doesn’t know how to ask for help.

Although disclosure usually happens between two people, it can also be done through articles, autobiographies, or speaking to a group. People such as Temple Grandin, Donna Williams, Stephen Shore, and Liane Holiday Willey are examples of people who have disclosed to the public and helped to change society’s perception of what an ASD is.

There is also a downside to disclosure because it change a relationship forever. Knowledge of a diagnosis can affect the opinion that co-workers, bosses, and peers have about an autistic person. Before disclosing, each situation should be evaluated carefully. A counselor or psychologist can also help with disclosure. There are also some great books on the subject such as Ask and Tell and Pretending to Be Normal.

In the case of elementary students, I would suggest that a parent introduce the class to ASD’s but not have their own child present in the classroom. One good book to use as a framework for a presentation is The Autism Acceptance Book. There are other books to share with children such as My Friend with Autism. Parents often fear classmates finding out about a diagnosis, but my experience as a teacher has been children will embrace this knowledge and are often eager to help out.