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Disclosing Your Diagnosis

6/30/2014

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New discoveries are supposed to be like a nifty present that opens to reveal the coolest of the cool, but sometimes newness is difficult to interpret and difficult to handle. Lots of emotions mix and mash their pushes and pulls until we are left wondering if the discovery present should never have been opened at all. One of the most common questions people with new AS diagnoses ponder is: What’s the best way to tell people about my AS- a way to keep them from thinking I’m a ‘less than’ person, or an incapable person, or a person they should feel justified to avoid and ignore?  How sad and confounding we have to think along these lines, but in the history of the world of disclosure, we are like all the other groups who have had to come out, stand tall and say, “I’m of a different sort and here’s why…”  Think I’m being dramatic? Take a look at civil rights legislation and you’ll see it’s there to protect people like us.

So we come to the land of Irony when we find out who we are inside the neurosystem of our brain, so much so it can make it difficult to fully concentrate on how this new perception of who we are can help us build a stronger and more satisfying life. When I began explaining my AS to people 20 years ago, the reaction was never what I hoped it would be. From my perspective, I was trying to educate people about different brains, mine in particular, but also the autism brain in general. I was celebrating these differences while asking people to understand and support people like me, kind of like a non-native speaker might express herself to the new country she found herself in. I went full blast on the disclosure and in hindsight, perhaps I should have been more cautious and calculating about when, where, and to whom, I expressed my differences. 

The fact is autism spectrum disorders have a lousy press agent. After a few decades of learning this the not so easy way, my advice for disclosure is guarded. Go slow when you start opening the door to your challenges and differences. Think twice before you disclose to anyone. What and how you will explain is very different. For example, you probably don’t want to you're your employer about your specific challenges in the same way you explain yourself to your partner, parents or friends. Make a little plan for disclosure. Here are a few tips to get you started.

Script a few different ways to explain autism and see if a good friend can help you fine tune it to fit the neurotypical world’s expectations. But along the way stay true to you. Don’t do things that you now know with certainty, are things that can challenge your system too much, make you too nervous, complicate your life, too severely. 

Navigate the world with care. Not everyone will care who you are or what your challenges are; many will think you're filling up a void with nothing more than excuses. When you find someone starting to act oddly (different in any way) around you. Pull back and give them tinier doses of your discovery or give them no more at all until you have to or maybe even, never, unless you are good with the consequences that may come your way if a person hears too much.

Give yourself plenty of time to readjust to the information you will be finding, have found and will continue to discover. Take whatever you are learning and make it fit within your comfort zone. Ultimately, you are the person who has to make a unique set of coping strategies and learning supports that are designed just for you.

No matter which way you disclose or how much you tell, never forget you are different, not broken.  Able, not disabled.  Challenged in unique ways, but not forever deterred. You are you and you are wonderful!


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