To Tell or Not to Tell: Disclosing an AS or ASD Diagnosis

…You
try to unzip me, and see my eyes fleeing away from you
like startled ponies. Do you really
know me? If you did, you would know that
if I look at you too long, I might burst.

(from my poem, “You Don’t See It”)

Some of you may have already read my last post in which I talked about my road to an official Asperger’s diagnosis. A recent conversation that I had with my direct supervisor at work plus the fact that this last Monday was National Coming Out Day in terms of the GLBT community spurred me to think and write about the topic of disclosing an autism spectrum diagnosis.
 
So far, I have been blessed with understanding people in my family, workplace, and social circles, so I have been relatively comfortable and confident enough to disclose my diagnosis (and before then, my self-identification as having AS). However, I do realize that due to misunderstanding and prejudice, not everyone who has an autism spectrum disorder may be in a position to “come out”, so to speak – so I respect the decisions of those who choose not to reveal, or to reveal selectively, for whatever reasons that they have. I’ll be discussing the benefits and possible drawbacks of disclosing, as well as my own personal experience up to this point.

How My Disclosing Began

As I mentioned in a couple of other posts, my counselor and I began discussing the possibility of me having Asperger’s back in February. Shortly thereafter, I began reading and processing my experiences both past and present and understanding what events and behaviors in my life were a possible result of Asperger’s. The result of that mental and emotional processing was a poem, “You Don’t See It” (which you can read here or here).

With further processing, I wrote more poetry. Back at the end of April, I felt confident enough that I had Asperger’s to start this blog, through which I began to explore the topic by writing posts. Since both this blog and some of my poetry are publicly available to read, I took it for granted that I was now “out of the closet” – which meant that because of the Internet (and Facebook), my friends and others in my social circle would now know.

Then, an article from the Columbus Dispatch appeared this past July about Asperger Syndrome and employment difficulties. This spurred me to write a Letter to the Editor thanking them for covering this topic. Two of my coworkers later approached me and let me know that they’d seen the letter, and one of them commended me on what I was doing. Needless to say, I was pleasantly surprised. So no doubt about it – I knew at this point that I was definitely was “out”. There was no going back.

After this, I slowly began telling others in my workplace as the beginning of the school year came and went. I would also use those conversations as opportunities to educate, explaining what Asperger’s is and how it affected me. For example, I would explain how the new paint and subdued lighting in my new office were better for my sensory issues than the harsh, bright white décor, the white desk, and florescent lighting of my previous office. I would explain my difficulty with eye contact. And so forth. Then after I received my official diagnosis last week, I approached my direct supervisor and began telling him about it (to let him know I had this diagnosis and to address workplace-related issues). His response shocked me – he said that he’d already pieced together that I was on the spectrum from my mannerisms and behavior.

I sat there with my mouth open. What? It hadn’t occurred to me that someone observing might be able to make this deduction – but after he explained that he had prior experience working with autistic children, it made sense. Evidently some of my behaviors, such as difficulty with eye contact and a facility of language (e.g. my poetry) had tipped him off.

As we continued to talk briefly about my diagnosis, the documentation of such, and possible workplace accommodations, a part of me wondered: Am I really having this conversation? Is this a dream? But here I was, discussing my Asperger’s with my boss, and finding a positive response and acceptance. This was no dream.

Why I Disclose

I walked away from that conversation feeling as if I’d won a small victory of my own. The truth is, I feel this way every time that I disclose my Asperger’s diagnosis, especially if the other person responds positively. I guess I’ve been emboldened by my own experiences, my own determination that Asperger’s is not something that is broken or that needs fixed, and by my refusal to feel ashamed of having it.

But a few other things have emboldened me as well. After giving it some thought, I came up with a few reasons for disclosing:

  • Educational opportunities. When I tell someone that I have Asperger’s, I briefly explain what it is and how it affects me. What I also would like to begin mentioning in these conversations is how my brain works – I am mostly a visual thinker, with some tendencies towards pattern thinking. I consider this – and many other autism spectrum traits such as focusing ability, persistence, and attention to detail – as a strength.
  • Awareness and “Myth-busting”. I believe that the public at large has certain perceptions of autism spectrum disorders and Asperger Syndrome – and unfortunately, some of those perceptions are negative. They include ideas such as: having an autism spectrum disorder is inherently tragic; autistics cannot hold down jobs; autistics cannot create artistic works of value; and autistics do not have emotion or empathy. I could go on and on. By disclosing, I think that I am bringing those around me one step closer to understanding autism spectrum disorders. Bruce Lee has been attributed as saying the following: if someone fears something, they will no longer fear it but embrace it once they are shown the beauty of it. And I wholly believe in this idea.

    Not to say that we are without our limitations, but up until this point a good percentage of the public conversation on autism has focused on limitations and these kinds of damaging myths. However, I think that if you know someone who is autistic, you might begin to understand him or her. Autism no longer becomes a remote thing, a “something” that happens to other people: it now has a face. Your coworker. Your friend. Your wife. Your next-door neighbor.
  • Dispensing of Personal Shame. It you are ashamed of something, you will try to keep it hidden. So logically, it would seem to me that the antidote to shame is disclosure and openness. Just like this is the premise behind things such as National Coming Out Day, it is also the premise behind my decision to disclose my Asperger’s. As you have read from some of my other posts, I was made to be ashamed of being “different” by some members of my family as a teenager – and I know there are many other people on the spectrum who were bullied by either schoolmates or family members for their differences.

    Disclosure and openness is my way of fighting back against that internal shame, that internal wound which is still trying to close and heal. The more I talk about my Asperger’s, the easier it becomes, and the more shame melts away. I am convinced that if I continue to do this, it will eventually cease to exist in my heart and mind.
  • Correcting Old Negative Core Beliefs. Related to the rejection of shame is another goal: to replace a negative core belief I have long held that one should not reveal one’s problems, infirmities, or weaknesses. It was impressed on me growing up that one did not reveal the family’s “dirty laundry” – which meant that one kept sufferings, vulnerabilities, and pain to one’s self. By openly talking about my Asperger’s, I am purposefully doing the exact opposite of what I was taught as a teenager. I do this as an act of deliberate defiance – in a sense, giving the middle finger to my aunt and the dysfunctional family system she helped create and that I was raised in. And I believe that I am not alone – if the stories I have read about other Aspies raised in dysfunctional families is any indication, I believe many of us have lot of fighting to do.

What Disclosure Actually Is

As you have probably deduced from what I’ve shared so far, disclosure is more than just telling someone, “I have Asperger Syndrome”, or “I have autism”. Since autism spectrum disorders are still very much misunderstood by the general public, it also helps to go into further details. An article on the Autism Research Institute website explains this idea a bit further:

For true understanding to develop, the discussion must also include personal information about how it applies to the person on the autism spectrum, the strengths it brings, its challenges, and how it affects daily living.

I must admit that I should have probably read that article before I began disclosing, but when I started telling people I knew that I should at least reveal how Asperger’s affects me. At work, I have been disclosing during conversations about my office move – basically, that the move was a blessing in disguise because it helped me with my sensory issues. Usually, that opens the door to a discussion about the other effects of Asperger Syndrome and the disclosure opportunity works out well. As I mentioned earlier, I plan to include in my “disclosure scripts” the strengths that come with Asperger Syndrome – in my case, language facility and visual thinking come to mind, as well as some of the organizational strengths I have.

Determining When to Disclose

Depending on our individual situations, we may or may not choose to disclose our diagnosis. If we are considering this decision, we may feel hesitant to reveal this information about ourselves. Such hesitancy is perfectly normal, and I experienced some on my own before posting my first poem, starting this blog, or even telling people about it in person. Some possible reasons that one might not disclose include:

  • Negative inner feelings. We may feel embarrassment, guilt, or even shame about our diagnosis; such emotions can persuade us not to talk about it. Many of us may have been conditioned during our formative years to keep anything perceived as shameful or a weakness to ourselves. Or we may simply worry about what others may think.
  • Real-life Ramifications. We might fear negative consequences as a result of disclosing a diagnosis. Due to misunderstanding, misinformation, and prejudice concerning autism spectrum disorders, we might have very real concerns about being treated differently by friends or family, being singled out or bullied at school, or being treated unfairly in the workplace. For example, I have already had women tell me since the inception of this blog that they are not “out” as autistic in the workplace due to very real concerns about advancement and equal treatment.

The good news: there are people who are open-minded who will carefully listen to and treat you fairly after disclosure. My aforementioned supervisor is one of them, as well as some other coworkers, family, and friends. My experiences with disclosure have been positive up to this point, and I am convinced (perhaps some would call me overly optimistic in this) that with eventual education, awareness, and understanding disclosure will become easier and less risky. Also, you have the choice as to who you tell and who you don’t tell: some choose to selectively reveal according to their needs and situations.

If you do decide to disclose your diagnosis, there are factors you need to consider: the audience and the reason. In Liane Holliday Willey’s book, “Pretending to be Normal”, she divides people into two groups: those who need to know, and those who might not need to know. Those who need to know might include:

  • People who are in some sort of authority over your actions or future. This might include teachers, employers, administrators, or public officials (such as police officers). Why to disclose: they may need to know about your diagnosis in order to help and understand you better. For example, you may need request accommodations at work or school to perform better, like the installation of better lighting, moving to a quieter environment, or access to other kinds of resources.
  • People with whom you’ve developed a strong, trustworthy, and deeply important relationship. This can include relatives, friends, your significant other/partner/spouse/lover, or coworkers you trust. Why to disclose: in order to help that person understand you and to help continue to foster good relations, disclosure of your diagnosis may be necessary. For example, your spouse/partner should know about any AS-related communication difficulties so that he or she can be more patient, allow you more time to say what you mean, or to help you better express yourself.
  • People to whom you turn for advice and support. This may include counselors, medical professionals, and clergy. Why to disclose: their knowledge of your diagnosis will better enable them to help and support you. For example: if you are in counseling or therapy, knowledge of your AS/autism spectrum diagnosis will enable them to better target their methods to help you during your sessions with them.

Anyone else (acquaintances, distant relatives, strangers, or other people with whom you might have only occasional or limited contact) might not need to know about your diagnosis.

How to Disclose

When revealing that you have Asperger’s or any other autism spectrum disorder, you have a variety of ways in which to do it. I have been mostly using the direct method, which is saying something like the following:

“I recently found out that I have Asperger Syndrome. In case you’re not familiar with it, it is an autism spectrum disorder which is on the milder end of the spectrum. My nervous system is more sensitive than an average person’s, which means that things like florescent lighting, too much noise, or irritating or scratchy clothes really bother me. Also, I tend to have trouble understanding social cues or may take what you say literally. I always knew something was different, but I’ve been walking around for the last 34 years undiagnosed until now.”

Depending on whether this engages the person into further conversation, I will then begin to talk about more specifics.

Of course, you’re not limited to this method. If you’re creatively inclined you might express what your reality of autism or Asperger’s is like – for example, I’ve written several poems about my experiences with Asperger Syndrome (which can be read here or here). Others chose to express this reality by visual means, such as those who post their work to their work to the Artists and Autism page on Facebook or some of the recent entrants for the 2010 Naturally Autistic Awards. You might gather information about Asperger’s or autism and pass it along to others for further reading. In her suggestions for disclosing your Asperger’s or autism, Holliday Willey includes the idea printing up a business card with essential information about it in case your require help or assistance (in fact, I recommend reading her entire section on disclosure in “Pretending to Be Normal”, as she includes some very good information).

Conclusion

Disclosure of an AS or autism spectrum diagnosis can be a critical decision. It is not without risk, but in many cases there are both tangible and intangible benefits. Each of us has to determine those benefits and risks and make her or his own decision in regards to disclosure.

I have chosen the path of full disclosure for the reasons I have discussed above. I am willing to live with both the positive and negative consequences of my decision, for it is my sincere hope that this will help others around me better understand autism spectrum disorders and Asperger Syndrome.

I hope you have enjoyed reading this post, and that it has helped or enriched you in some way. Please talk back to me about your experiences with disclosure. Whom have you told about having Asperger’s or autism? Have your experiences with disclosure been positive, negative, or a bit of both? Have you been able to help others better understand autism or Asperger’s? I’d love to hear from you.

Until next time,

Nicole

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4 thoughts on “To Tell or Not to Tell: Disclosing an AS or ASD Diagnosis

  1. I come upon your post and I enjoyed it and I agree with you. The AS diagnosis was, of course, not around when I was growing up 50 years ago. My challenges and people’s reactions to me, bred in me lifelong feels of shame, worthlessnes, identity confusion, frustration and more. I am not able to find anyone in my eara who evaluates adults over 25 for autism, so self-diagnosis is the only tool I have. I have spent most of my adulthood hiding “in the closet” about my challenges and my background. Only recently have I attempted disclosure online and in an application for a volunteer position. I have experienced, so far, delayed feedback about my story. This makes me wonder if people are uncomfortable with the issues I have raised or if they even care. But I want to continue and I hope and pray that I don’t feel pushed to returning to my “closet.” Thank you for this post and for sgaring your experiences!

    • Hello Lisa:

      Thank you for sharing your story. I grew up being ostracised, bullied, questioned, pressured to conform to some sort of “normal” standard…and compounded with abuse. Asperger’s was not around when I was growing up either — I graduated high school in 1994, the year that it became an official diagnosis, and autism back then was perceived as being something that just happened to young boys. So, I was just the weird loner, the freak, or the nerd. And as an adult, I was the target of workplace bullying, deception, and being used by people who I did not recognise were trustworthy. So I can understand where you are coming from,

      Whether self-dx’d or officially dx’d, that is one issue we all must face is that of whether or not to disclose, or when, or where. I do sometimes sense a discomfort when I share that I have Asperger’s…if as it that person doesn’t know what to say or how to handle it. And that is not surprising, considering how autism and Asperger’s are still perceived by the generally public.

      Bravo to you for your courage and may you continue to find the strength to be “out”. I hope all works out well for you.

      -Nicp;e

  2. I have struggled with friendships, employment, and relationships since I was a small child and now in to my adulthood. I recently fell in love with a man. I couldn’t bring myself to tell him that I had Asperger’s, until the relationship was already over. I decided to email him a short letter explaining some of the akward moments and to apologize for frustrating him at times. I have always had to deal with rejection.I often find that people always reject what is different or if they have to put in more work than usual just to make anything work. In my case, I felt like he deserved a woman who was normal. It hurt for me to part with my happiness. There wasn’t a day that went past in the three short months we were together, that I didn’t look forward to seeing, spending time with him, and conversation. There is a comfort that I felt while with him that I can not describe. In the long run I guess it was the right desicion.

    • Hello Jennifer:

      I can understand how painful that is. I suspect you’re not the first person to feel that way, and not the last. I have been fortunate enough to find a man who a) understands me, b) is probably on the spectrum himself, and c) is very patient. I think rejection is a universal thing we encounter, especially if we are so different than what’s considered the norm. The only thing about your comment that caused me a bit of pause was “I felt like he deserved a woman who was normal”…because I can easily fill in the blank because of having felt that way myself with “…because I’m not.” I think we have to be careful with thinking that because we may be different that this doesn’t transition over to the idea of being too “broken” or “flawed” to love…because we are ALL broken and flawed, no matter what. Peel back the veneer of those who seem to be “perfect” and who seem to “have it all together”, and there will be flaws there, too.

      If one desires a romantic relationship, I think two things which are important here are honesty and perseverance. For me, if I couldn’t tell my partner that I have Asperger’s, I would be forced to pretend and live a lie…not something I’m interested in doing anymore because I’ve done it for so many years. And while I’m not going to be as Pollyanna-ish and hopelessly romantic as to say “there’s only one person out there for each of us”, I do believe that there is much potential out there for us to find people who would be willing to love and care about each of us, and for us to be inspired to love and care for them in return.

      May you find what you need, and best wishes on your journey.

      -Nicole

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