Disability, Discrimination, and Disclosure: Being "Out" In The Workplace

Living with Asperger's, as with many other "hidden" disabilities, can be a lonely prospect. At times, telling others about your disability can be a help. Other times it can be a disaster. It can be hard to know whom to trust. Do you tell? Or don't you tell?

When it comes to the workplace, the question becomes all the more difficult. A reader, whom I'll call G, wrote to me to ask my thoughts on the subject. G wrote:

"...I'd be interested to hear your thoughts on whether to be ‘out' as Aspie at work, which, these days includes whether you want to be ‘out' on the web, in social network sites, etc. It's an issue that I
think about. I don't lose sleep over it, but it would be nice to be able to share, for example, your column, or other coping resources, without the danger that my next potential employer might freak out because they're ignorant about the condition. I'm a Ph.D. working as a research librarian, and despite my career ‘success,' I worry about discrimination."

G's question, for me, was particularly a propos - it's a consideration I think about nearly every day. As an advocate, I think a lot about stigma, and how many people struggle in silence because they're afraid to speak out. I'm a bit ashamed at times to say that I'm one of them.

When I chose to start my first blog, I had no idea that I'd ever be writing in so wide a forum...I hoped only that perhaps a few would stumble on my blog, and maybe not feel so alone. I feel incredibly blessed that I have been able to reach so many. But that also implies, for me, a certain responsibility. It's a challenge to balance that responsibility with my own needs for personal privacy - and my concerns about discrimination.

Several years ago, when I wrote about the subject of disclosure on my personal blog, an anonymous reader commented:
"I don't generally disclose. I'm far too private, and I've found the words ‘syndrome' and ‘disorder' have none-to-small stigmas attached to them. My mother, and my former girlfriend both knew. My girlfriend was not the least bit understanding, basically saying I was full of crap even though everything, including our problems, fit.

Full disclosure is rarely worth the effort for me, unless it's someone really close who already understands my particular oddities, strange shutdowns in loud places, confusion around too much detail, and strange obsessions. If they already understand that, the word ‘asperger's' can only do good. It's a label, an all-encompassing umbrella that can only help understanding. After all, once they have the label, they can just look on google or Amazon and find even more answers, support stories, books, websites, etc.

The problem with general full disclosure that I've found is that the stigma comes first, then maybe understanding, with a very big ‘maybe'."

In my personal life, disclosure has been a godsend - it helped more than anything in my life to help me to understand the misunderstandings and dynamics that cropped up on a regular basis. But in the area of work, I still have grave misgivings. I work in the corporate world - not an environment that tends to be kind on the iconoclast. What becomes of an original thinker in a world where conforming is the norm?

And then, of course, is the politics of those who seize on weakness...I learned to be cautious about that early in my career, long before I'd ever heard the word Asperger's. Although I hadn't yet heard about it, I was feeling its effects on my life. Acute depression and anxiety had me at my breaking point.

As an attempt to rein in this stress, I chose to check myself into a psychiatric program for a few days, all I could afford at the time. Honest by default, I made the mistake of telling my supervisor...who gave the initial impression of being sympathetic. I was soon to learn that appearances were not as they seemed.

After I returned, her manner toward me changed abruptly. Always a bit on the exacting side, now she became an extreme micromanager. My self confidence took a large hit - was I really the screw up she seemed to think me? Had the quality of my work really changed so suddenly?

What was going on became completely obvious eventually, when she made a scene one morning about a report I had prepared. She'd been struggling with it all night, she loudly complained to our manager and anyone who would listen. I'd password protected it so she couldn't get in, she claimed.

Asperger's Syndrome Essential Reads

A Concern About "Asperger's" Terminology

Neurodivergence

I knew this wasn't true, and it didn't make sense. I went back to my files and confirmed that it indeed was not true, asking a co-worker to accompany me as a witness. She'd fabricated the whole thing to make me look incompetent...this is when I started putting pieces together.

When I had told this woman, in confidence, of my plans, she'd patted me sympathetically on the shoulder. "I understand. Take all the time you need," she'd said. This was what I had paid attention to - but I'd missed the sub-text of her next words. Her sister, she had elaborated, had been bipolar and her family "...went through HELL with her." She went on for several minutes of comments along these lines becoming quite angry in the process.

I missed the significance of these comments and their emotional subtext. Until I saw her behavior. That was when I started to see...she'd had bad experiences with people she viewed as "crazy." Because of that, she now wanted nothing to do with me. She didn't have the authority to fire me, so she went out of her way to sabotage me. The fact that I'd been perfectly competent in the job prior meant absolutely nothing. The label was everything.

In the end, she succeeded. Rather than endure the stress of her bullying on top of my existing issues, I gave my notice. The experience shaped me very strongly - and I learned to mask my disabilities and their related consequences in order to survive. Depression was a weakness that you dared not admit - it could lose you your job.

The stigma attached to Asperger's is no less than that for depression - and it shares some additional facets. Looking at the diagnostic criteria for Asperger's, I often wonder if I'd have been given the opportunities that I have had my disability been known. On the surface, the criteria would seem to preclude my being as successful as I have.

And that's the cruelty of the label. In today's world, we require people to be labeled in order to give them help and coaching in the areas they need. There isn't an appreciation that everyone, neurotypical people included, have strengths and weaknesses. Why is it that lacking computer skills is not considered a disability, but lacking social skills is?

Why can't we see all abilities as equal - facets of a unique human being? The fact of it is that we deem some abilities as more meaningful than others. Social skills are considered a must have, while the splinter skills of a person on the spectrum are somehow less than.

But really, a gap in skills are only a disability in an environment that requires them in order to function. In a building with no elevator, being able to climb stairs is crucial. If you work on the second floor, inability to do so becomes a disability. That's why we have elevators.

Why do we not structure an environment where those who struggle with social skills can succeed? Where that gap is not a disability? Some are.

In 2004, businessman Thorkil Sonne, faced with the lack of employment prospects for people like his autistic son, decided to do something about it. The result was Specialisterne, a company founded with the sole purpose of matching the abilities of people on the spectrum to the needs of corporations throughout Denmark. The company has since expanded to several other European countries, and inspired like companies, such as Aspiritech, here in the US.

These companies fill a big gap - and provide a place where those on the spectrum don't have to hide who they are in order to be employed. I hope that someday, the mentalities and structures these companies have pioneered will eventually encompass the rest of the business world as well. Their business models illustrate the very thing that so many of us advocates work to show the world.

Those on the autism spectrum have value, and offer a lot to the world. Working together, those on the spectrum and those who are not can get a lot farther than either alone. Inclusion is something that helps everyone.

I look forward to a day when people like G, and me, don't have to worry that we might lose our jobs, or be looked down upon as professionals, because we have a different profile of skills, challenges, and abilities than those the world calls "normal." That one day, the world will look at us, and see the abilities, rather than the disabilities.

Unfortunately, we're not there yet. But I have hope...do you?

For updates you can follow me on Facebook or Twitter. Feedback? E-mail me.

For More About Asperger's, Employment and Disclosure

• Woman with Asperger's - To Tell or Not to Tell: Disclosing an AS or ASD Diagnosis
• Stephen Shore Ph.D. - Disclosure for People on the Autism Spectrum: Working Towards a Better Mutual Understanding
• Asperger Management - Automatic disclosure
• Roger N. Meyer - Asperger Syndrome Employment Workbook
• Parenting Asperger's - How Much To Disclose About Asperger's To An Employer?
• Asperger's Employment Resources
• Coulter Video - Asperger's At Work
• Coming Out Asperger: Diagnosis, Self-Disclosure and Self-Confidence
  

About Aspiritech

• Aspiritech Web Site
• Autism Hangout - Brenda Weitzberg: "Putting People On The Spectrum To Work"

About Specialisterne

• Specialisterne Web Site
• Wired - Thorkil Sonne: Recruit Autistics
• TEDx - Thorkil Sonne: Specialisterne
• Autism Hangout - Thorkil Sonne: "Our goal is to create 1,000,000 jobs for people with autism."

My apologies to those who have hearing impairments - some videos are not captioned.