My Advice When I'm Asked "Should I disclose my disability or diagnosis?"

Three important things to consider

Autism is considered as a developmental disability, which means I was born with what is known as Aspergers (an autism spectrum disorder), but I wasn't diagnosed until I was 36. In 2020 I was diagnosed with cancer that has now progressed to stage IV and is currently incurable.

Over the past few years, I've shared my story of both diagnosis through blogs, radio and podcast interviews, and articles, and a few books.  

Since being diagnosed with multiple disabilities I've had the privilege of not only sharing my story with the world but also sharing my suggestions with those in the disability community.

I have often been asked questions about disclosing my 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 to consider if you are considering disclosing your disability or 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. Second, it almost always becomes a matter of financial capability. Wanting to pursue a diagnosis didn't mean that 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, faith communities and educational institutions. The time and financial resources that 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 that I was seeking.

On the other hand, getting a cancer diagnosis is an enormous emotional weight. It’s quite a bit more complicated and challenging. Getting a diagnosis of a chronic illness can take some time to process so take that into consideration when thinking about disclosing.

Disclosing any disability diagnosis is extremely personal and for some they may see the potential problem in making it public knowledge. There is still a large segment of our culture that either because of ignorance or intention, fail to be accepting or accommodating to those with disabilities.

My advice is to always go with your gut. Don't underestimate the power of your ability to make the right choice for you. 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 a diagnosis of any kind 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 live well and be happy 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 with a disability or chronic illness 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 autism and cancer 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 that 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 to not only 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.

Stay Strong

---

Check out my new podcast