My Advice When Asked, 'Should I Disclose My Autism Diagnosis?'
Recently I celebrated my 39th birthday. I was born on June 5, 1978. Autism is classified as a developmental disability, which means I was born with what is known as Asperger’s syndrome (an autism spectrum disorder), but I wasn’t diagnosed until almost three years ago at age 36. Celebrating birthdays are now a much more significant experience because I now have the opportunity to make more sense of my beginning as I continue to build a better life for myself and my family.
Over the past two years, I’ve shared my story through blogs, radio and podcast interviews, and articles. I’ve also recently released my first book this year.
Since being diagnosed with ASD in 2014, I’ve had the privilege of not only sharing my story with the world but also sharing my suggestions with those in the autism community, particularly the parents of teens, young adults and other adults recently diagnosed on the autism spectrum.
In the last several weeks, I have been asked by several people a question about disclosing my autism diagnosis. While I believe that to be a personal decision that can be best made in the context of a great community of support and love, I will share three things I believe should be considered if you are thinking about disclosing your autism diagnosis.
Go with your gut: Pursuing an autism diagnosis after early childhood can be a difficult decision. It can become even more difficult as you enter into adulthood. In my own experience, pursuing a diagnosis at age 36 was difficult because of a lack of resources available to adults. First, it was hard to find someone who could and would diagnose me with ASD. Second, it almost always becomes a matter of financial capability. Wanting to pursue a diagnosis didn’t mean I would be able to afford the assessments that can range in the thousands of dollars.
This is why it becomes even more complicated when deciding whether to disclose your diagnosis to family, friends, employers and/or educational institutions. The time and financial resources you’ve invested in receiving a diagnosis will inform your position on whether or not to disclose. Pursuing a diagnosis as an adult is hard work, and I have found that when deciding to disclose my diagnosis publicly, I had to consider the investment I had made in getting the answers I was seeking.
Disclosing your ASD diagnosis is extremely personal, and for some they may see the potential problem in making it public knowledge. There is still a large portion of our culture that either because of ignorance or intention, fail to be accepting or accommodating to those with neurological differences.
My advice is to always go with your gut. Don’t underestimate the power of your ability to make the right choice for you. If you have made your way through the world without a diagnosis of ASD, then you know how to make the right choices for your own life. Trust yourself enough to decide if disclosing your diagnosis is good for you. After all, choosing to invest in getting a diagnosis is an investment in your own self-development and growth, so learn to trust yourself.
Give consideration to your goals: If you have pursued an ASD diagnosis, then perhaps you have done so with a goal in mind. When I decided to pursue an official diagnosis, I had determined that one of my goals was to learn more about myself, but that wasn’t the only goal.
As a husband, I have a goal of being the best partner I can for my wife. I wanted to know how and more importantly why I processed the world the way I did. Getting a diagnosis was important because I wanted to strengthen our relationship.
As a father, my goal was similar. I wanted to learn how to maximize my time with my boys. I also had the goal of using my new-found knowledge of self as a way to teach them how to be more kind and compassionate.
As a pastor, I have a goal of finding the intersection of my faith and service to others with my diagnosis. I wanted to discover how to share my life with others who may have little to no knowledge of how to allow their faith to inform their love for all of humanity and their ability to see the image of God reflected in every human life.
In reality my goals, which are many, may not be your goals but I do think it is important to keep your goal(s) in mind when deciding to disclose. The overarching theme of my goals was to learn how to place myself in a position where I can reach my potential as a husband, father, and pastor. I suggest strongly considering how, with whom, and when (or if) disclosing will help you maximize your potential. In my humble opinion, disclosing your diagnosis shouldn’t be about others and their opinions of you as much as it being about an opportunity for you to be at your best in every possible situation.
Go slow: If you’re an adult who has recently been diagnosed on the autism spectrum, chances are you’ll need some time to reflect. When I was diagnosed, it didn’t come as a surprise, but it did increase my sensitivity. I found myself becoming more sensitive about my innermost thoughts and feelings, dreams and hopes, struggles and suspicions.
All in all, I discovered that a diagnosis at my age came with a liberating sense of freedom as well as an overwhelming flood of emotions. I needed time to sort it all out and to study more about ASD and how it might be impacting my personal and professional life. It was because of this flood of new facts and feelings that I decided to take it slowly. It was a few months before I starting to disclose my diagnosis, but my timeline might not be yours.
If you’ve decided it is beneficial for you to disclose your diagnosis, just remember that you’re not obligated to tell everyone immediately or even at the same time. Consider exploring how to take your time with different groups of people. Remember you have the power not only to determine the purpose of disclosing your diagnosis but also the pace at which you decide to do it.
With or without a diagnosis or with or without disclosing your diagnosis, know that your value isn’t tied to how others perceive you. Your journey is your own to both navigate and narrate, so however you decide to tell your story, tell it with confidence because your story matters.
A version of this post originally appeared on The Autism Pastor.
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