It was my first job after college. I joined my co-workers for lunch.
After some opening small talk, somehow it came up that I went to Wheaton College, and Trinity International University (at that time, known as Trinity Evangelical Divinity School).
Suddenly, everyone became very quiet.
“Sorry about all the swearing I was doing earlier!” someone murmured. I tried to explain that being a Christian, for me, is not about expecting people to “act nice.”
But, the terms “Wheaton College”, and “Evangelical Divinity School” (two schools I attended), coupled with the term, “Christian”, evoke all sorts of imagery and stereotypes for people:
Flanders from the Simpsons
Radical right-wing white guy
Over time, as people get to know me, I break some of their stereotypes of what a Christian is. I’m not radical right-wing, and I’ve voted both Democrat and Republican at different times in my life. These are a couple of examples.
Choosing to talk about one’s politics or religion can be tricky, but disclosing one’s Aspergers or autism diagnosis can be even trickier.
Society at large is beginning to better understand Aspergers and autism, but there is still a long way to go. Thanks to SR Salas, Lynne Soraya, and other autism advocates and bloggers, that’s beginning to change. But self advocacy can take a lifetime.
My goal, in this article, is to clarify when and how to talk to others about your diagnosis of autism or Aspergers.
Google defines self-advocacy as “the action of representing oneself or one’s views or interests.”
Self-Disclosure and Self Advocacy Secrets from the Autism Community
I reached out to Aspergerians and autistics for these tips, because it’s important that you hear from people in the autism community.
Emphasize Your Similarities
Are you different? Different than what? Who? How? You’re certainly not different than who you were last month. Instead of trying to explain why you are not the same as (fill in a name here) why don’t you focus on what makes you the same? No. Really. It may sound counter intuitive or an attempt to avoid a tough subject. But it’s really important that people acknowledge both strengths and weaknesses in themselves and others. No matter what you say to describe your perspective, your quirks, your special interest……yadda…yadda…. every body already knows somebody or had a family member just like you. If people can stop trying to define labels and simply open their eyes, they would realize they already understand almost everything about you. But, if you absolutely must explain yourself, paint a full picture by also providing examples of a known public figures for each item on your bullet list.
(Michael Leventhal, advocate for neurodiversity rights, creator of Cloud-Burst.tv and AutismBrainstorm.org.)
Three Groups to Disclose (or Not Disclose) To
Self advocacy and self-disclosure in the workplace has its pros and cons.
Rudy Simone, in her book, Aspergers on the Job, tackles self-disclosure in her chapter, To Tell or Not To Tell, That is the Question.
I wish there were easy answers, the but there are plusses and minuses to telling your co-workers and/or your manager about a diagnosis of Aspergers or high functioning autism.
Arguments For and Against
Disclosing your diagnosis can advance the cause and shine a positive light on those with Aspergers.
But on the other hand, it could cause you more trouble than it’s worth.
If you don’t disclose, your friends and coworkers will have no frame of reference, no platform for understanding your differences.
On the other hand, if you do disclose, people will still wonder about the differences. You’ve got an ongoing challenge to self advocate.
If you not disclose your diagnosis to your employer, you’re not going to be protected by the ADA (American Disabilities Act) if you are discriminated against.
On the other hand, it’s always difficult to prove that discrimination is at the root of work problems.
It’s your decision. Take your time to think through the pros and cons.
Here’s what one person with Aspergers shared –
I don’t discuss my ASD with coworkers much, and am starting to be secretive about it. I was very happy when I first found out (and scared, too), but it helped me make sense of who I am, how I acted, why I act the way I do, etc. The essential missing puzzle piece that had finally been found, the thing I needed to make sense of myself. It’s been a (number of years) year struggle to find this piece, and has helped me in my relationship with my wife and children.
I wanted to share, what I thought was a positive for me, with coworkers. After talking with my supervisor, he suggested I just tell certain members of upper management. I will never do this again (I was basically told to keep my condition under control, because why? I don’t know. Someone had a problem with something I said, did, acted? It was kept ambiguous. How can you change how you act if you’re not told what you did?).
You can say that you struggle with particular challenges, whether sensory, or communication, without talking about your specific diagnosis.
Here’s what one person said:
If I am talking to someone new and a level of trust is required, I tell the person I have difficulty with eye contact. In fact, if I appear to be staring at nothing it means I am paying close attention to what is being said. Trying to maintain appropriate eye contact is very distracting. I was in a leadership class at work when the group was asked to talk about body language. I was astounded when several people said poor eye contact means a person is not trustworthy. The instructor did not challenge the slur so I spoke up.
Resource – You can go to Forward Motion Coaching to get more information on disclosure and your rights under the Americans with Disabilities Act – Look for the Workplace Disclosure: Strategies for Individuals with Asperger’s Syndrome and NLD to decide when, if, and how to disclose to an employer and request accommodations.
Assuming you have close friends you trust, versus acquaintances who need to earn your trust, you can share your diagnosis.
Here’s some advice from one person with Aspergers –
As for friends they will remain friends regardless of your situation. Most of us tend to have real friends rather than superficial people we call “friends”. Our job is to explain and educate and be accepted for ourselves and not because we’re autistic. In fact our job in some ways is to explain to others including friendly groups what autism or Aspergers is all about so that we can gain greater acceptance.
For loved ones, they get the highest level of teaching/explaining. After all, they’re the ones who have to live with me to some extent (I am a single person by choice).
Recommended Resources for Self-Advocacy and Self-Disclosure
What is Aspergers? In this article, I strive to present both the positive characteristics and also challenges of Aspergers.
High Functioning Autism. Many people with autism object to “high functioning autism”, but I’ve included this page on my site because it’s a high searched term, and I don’t want thousands to miss out on highly useful information about the autism spectrum.
Aspergers in Adults. This page can help your loved ones better understand what it’s like to be an Aspergian adult.
Be Different – John Elder Robison, himself an adult with Aspergers, describes Aspergers proudly. I love his take on things.
Inside Aspergers Looking Out – Pictures are worth a thousand words. Autistic adults have told me that Kathy Hoopmann has captured, with gentle humor, the strengths and challenges of living with Aspergers.
- Choose who you disclose to carefully.
- Not everyone has your best interests at heart. Acquaintances should become friends you can trust over time, without betrayal, before you tell them about your diagnosis.
- Use the books above to help close friends and loved ones better understand you.
- Read Aspergers and autism blogs, like Invisible Strings and Musings of an Aspie and refer friends and loved ones to those blogs to help them better understand Aspergers and autism. Read SR Salas’ blog and check out the Autistic Advocacy Network to learn the How To’s of self advocacy.
- Check and read resources, including Forward Motion Coaching, and Aspergers on the Job, before deciding whether or not to disclose your diagnosis at work. In the United States, Disability Rights Advocates is a non-profit organization that may be able to guide you in your decision.
Photor credit – Copyright: stockbroker / 123RF Stock Photo
What are your thoughts, secrets, and tips about explaining your differences to others? Please share them in the comments below!