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 sinmply tell the facts about autism. For understanding to happen, disclosure must include personal information about how ASD applies to 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
- 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, neighbours, 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 anxiey 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 alotting 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. People with ASD 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 hearbreaking to see a person fail all because no one knows they have ASD and the person with ASD 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 the person with an ASD. 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.
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This is just the information I’ve been looking for, thank you! I’ve realized fairly recently as an adult that I’m on the spectrum and I’ve been struggling to find resources to guide me. Self diagnosing suddenly explained so much of what I’ve dealing with from childhood. Thank you.
Hi, I’m in the process of trying to get a diagnosis. I read a lot in your article and then came here as I didn’t know who to tell. I asked my mother once if I had been tested she said no, there was no need. However, if I look back at my childhood and everything there was absolutely a need. Why would she feel there was no need? Did she not want another child with special needs (my brother has ADHD)?
Sometimes parents are in denial about their children and are too afraid to pursue the correct diagnostic label that would help their child for their lifespan. When I meet reluctant parents, I try to help them see how this will help their child especially if they need additional supports to be successful in life or a disability income if they can’t work full time. I remember how upset I felt when my second child was getting diagnosed. I just couldn’t believe I was going to have two children with autism and was scared. Once I got over the fear, I embraced it and things have turned out quite well. I am glad they both have the supports they need in life because I will not always be here to get them the things that they need.
I’m a mother of a 3 year old boy just diagnosed with ASD.
Do you have a specific question you would like to ask?