Diary of a Middle-Aged Aspergian


Aspergian man in motion

Rick Hansen training on wheelchair ergometer shortly before embarking on Man in Motion Tour, Biomechanics Laboratory, University of British Columbia, Vancouver, BC, Canada (Photo D. Gordon E. Robertson )

In March of 1985, paralympian and disability activist Rick Hansen set out from Vancouver, British Columbia to circle the globe in his wheelchair. Covering nearly 25,000 miles during his “Man in Motion” tour, Hansen raised $26 million for spinal cord research while changing fundamental perceptions about disability and the need for a more accessible world. Inspired by his story of triumph over adversity, songwriters David Foster and John Parr commemorated his journey home across Canada with the lyrics to “St. Elmo’s Fire (Man in Motion),” a song later made famous by a movie of the same name.

Since my diagnosis with Asperger’s Syndrome in 2013, I’ve struggled with using the term disability to describe myself. It’s at times felt disingenuous to do so; certainly I can’t compare my experience to that of Rick Hansen and individuals with a physical disability, or to individuals with severe psychiatric conditions such as schizophrenia. Yet I struggle nonetheless with basic functions of daily living, particularly when it comes to communicating effectively with others. I may not have physical limitations (other than sensory issues) but I do need understanding and reasonable accommodations to find success in many aspects of my life. And such accommodations are based on having a legally-qualified disability.

Gonna be your man in motion, all I need is a pair of wheels. Take me where my future’s lyin’, St. Elmo’s fire…

John Parr “St. Elmo’s Fire”

The ADA defines disability as “a physical or mental impairment that substantially limits one or more major life activity.” There is no question that High Functioning Autism does exactly this. (The Americans with Disabilities Act includes “interacting with others” as a major life activity, along with communication, thinking, and other functions.) But where does this leave me? Is there a “disability spectrum” and if so, where do I fall on it?

The world Rick Hansen traveled in the mid-1980’s was very different with respect to disabilities. The Americans with Disabilities Act was still years away, there were very limited programs to promote accessibility, and people with disabilities enjoyed little in the way of workplace protections. Few people expected a man who lost the use of his legs at age 15 to circumnavigate the planet under his own power. Thirty-four years later, I’d like to say that has all changed–and indeed much has. Yet we have a long way to go in regard to physical as well as mental and psychological conditions.

I can climb the highest mountain, cross the wildest sea. I can see St. Elmo’s fire burnin’ in me, burnin’ in me. Just once in his life a man has his time. And my time is now, I’m coming alive.

John Parr “St. Elmo’s Fire”

Recently I found myself for the first time having to stand up for my legal rights as a person with an Autism Spectrum Disorder. This forced me to at long last acknowledge and own my status as a person with a disability. For more than six years I’ve managed to avoid this fundamental question about disability, floating along in a liminal space somewhere between disabled, differently-abled, and having a different “operating system.” Yet the bottom line is that my brain does work differently from others around me. My ability to communicate and interact with others is impaired by my condition, the very definition of a disability. I do benefit tremendously from reasonable accommodations both at work and at home.

As I grappled with this question of disability, “St. Elmo’s Fire” suddenly spoke to me in new ways (yes, I grew up in the 80’s.) Through Parr’s song, Rick Hansen’s story has helped me see for the first time the bigger picture of living with a disability. Even now, when I’m struggling with the daily challenges of Asperger’s, I find myself closing my eyes for a moment. I see Hansen as he powers his wheel chair across the farms of western Canada; a man in motion, heading toward a new horizon underneath a blazing sky. With his journey Rick Hansen didn’t just overcome his disability; he fundamentally changed how the world understood it.

I can hear the music playin’, I can see the banners fly. Feel like a man again, I’ll hold my head high. Gonna be a man in motion, all I need is a pair of wheels.

John Parr “St. Elmo’s Fire”

So it turns out the issue for me isn’t just whether I have a disability; it’s how the world sees Autism, and how our society defines disability. In standing up for my rights as a person with High Functioning Autism, I’m not just advocating for my own cause. I have the privilege of speaking on behalf of everyone with my condition, and for that matter on behalf of all individuals with disabilities. I own my Autism; it’s who I am and there should be no shame in that for anyone. If being understood and accommodated means acknowledging my disability, then I am proud to do so–and to hell with whatever stigma our society attaches to disability. I believe Rick Hansen would say the same.

Success with workplace accommodations

Many individuals with High-Functioning Autism have exceptional skills and abilities that are an asset in the workplace. Yet our employment statistics are grim, with a staggering portion of us chronically unemployed or under-employed. This is likely because many Employers mis-classify their Autistic Employees’ communication difficulties, personality quirks, and executive function challenges as behavior and/or performance problems rather than recognizing them as disabilities inherent to Autism Spectrum Disorders. Everyone loses out when this happens, as many of these individuals can succeed in their careers when provided with simple and reasonable accommodations. Yet it can be remarkably difficult for people with invisible disabilities such as High Functioning Autism to obtain accommodations.

For better or worse, I’ve had to learn quite a bit about this subject (certainly more than I ever wanted to know) so I thought I would share the information I’ve gathered. As always, I hope it may be helpful to some of you.

DISCLAIMER: Although I have tried to present information as accurately as possible, I am not an attorney and this article is not intended to serve as legal advice. Readers are strongly encouraged to seek qualified legal counsel before acting on any of the matters discussed herein. Or to paraphrase the late Douglas Adams, anything in this article may be wrong.

Employer’s obligations under the ADA

The ADA requires that Employers provide reasonable accommodations to otherwise qualified Employees with disabilities so long as such accommodations don’t present an undue hardship to the Employer. An Employer’s obligations under the ADA are triggered as soon as the Employer become aware that an Employee may be experiencing a performance problem that could be helped by an accommodation. Such notice doesn’t have to be written and the Employee doesn’t even have to use the word “accommodation.” The Employer may ask the Employee to fill out a form or other paperwork, but they may not ignore the original request even if it wasn’t submitted via the Employer’s preferred method.

RESOURCE: The detailed regulations for the ADAAA are available in 29 C.F.R. 1630. Note that the most helpful (and longest) portion of the document is its Appendix: “Interpretive Guidance on Title I of the Americans with Disabilities Act.”

The ADA and the ADAAA

Employers will ideally have human resources personnel well-versed in the latest version of the ADA, and have procedures in place to ensure that Employee requests for accommodations are handled fairly and promptly. Unfortunately, this isn’t always the case and some Employers have a difficult time understanding the nature of their Employees’ social/communicative disorder–especially in the case of high-functioning individuals. This can make the the accommodations process for High-Functioning Autism unnecessarily complicated and adversarial. The original ADA is partly to blame for this problem, establishing a threshold for mental disability that required the Employee’s mental condition to be so severe and pervasive that they were likely to be considered unqualified for the vast majority of jobs. This was of course contrary to the ADA’s goal that all disabilities should be treated equally.

In 2008, Congress clarified its intent with passage of the ADA Amendments Act (ADAAA) which made it much easier for individuals with mental disabilities to qualify under the ADA. As described in the EEOC’s fact sheet on the ADAAA, “An impairment does not need to prevent or severely or significantly restrict a major life activity to be considered ‘substantially limiting.'” Thus an Employee need only demonstrate that their condition interferes with activities of daily living such as “communication” and “interacting with others.” And because these are cornerstones of Autism in all its forms, almost every person on the Autism Spectrum will be qualified regardless of function level. The ADA even specifically includes Autism in a list of conditions that are virtually always disabilities. (Note that individualized assessment is still required in every case; the ADA does not provide for any per se disabilities.)

RESOURCE: A good resource for understanding the changes contained in the ADAAA is the EEOC’s Questions and Answers on the Final Rule Implementing the ADA Amendments Act of 2008.

The interactive process

When Employee’s need for accommodation is obvious (say, an individual uses a wheelchair and requests a ramp to access their office location) the Employer can simply grant the requested accommodation. Otherwise, the Employer must engage in the ADA-defined “Interactive Process” which is the means by which the Employer works with an Employee to determine if the Employee has a covered disability and if so, how best to accommodate it in the workplace.

The Job Accommodation Network (JAN), an excellent resource oft cited by the U.S. Equal Employment Opportunity Commission (EEOC), provides a succinct guide to determining disability accommodations under the 2008 ADAAA. Under the ADAAA, a disability is defined as an impairment that substantially limits a major life activity. So as described by JAN, the basic steps of disability determination are:

  1. Does the employee have an impairment? If yes,
  2. Does the impairment affect a major life activity? If yes,
  3. Does the impairment substantially limit the major life activity?

For this last question, JAN states that if the impairment is on the EEOC’s list of conditions that are almost always found to be disabilities, an Employer needs only to obtain documentation of their Employee’s diagnosis and then they should move on to making accommodations. According to the ADA and the EEOC, extensive assessment should not be required because Autism inherently affects, as discussed above, brain function and communication. (Note that it may still be beneficial for the Employer and Employee to discuss specifically how the disability affects the Employee’s work, not for purposes of determining qualification but to determine how best to provide accommodations.)

It must be emphasized that the interactive process is a dialog between Employer and Employee. Outside expertise may be helpful in some instances, but accommodations are ultimately determined between Employer and Employee–not “prescribed” by a healthcare provider. After all, the Employer and Employee are typically the most knowledgeable about what is needed and what is feasible in their particular workplace. (This seems to be a frequent point of confusion for some Employers, who believe a doctor must stipulate what they’re required to do for their Employee.) The Employer may request documentation and/or additional evaluation when the Employee’s need for accommodations isn’t “known or obvious.” However, the ADA places clear restrictions on what’s appropriate for the Employer to request, and such requests must be specific to the disability in question.

RESOURCES: Barbara Bissonnette’s Employer’s Guide to Asperger’s Syndrome is an excellent resource for understanding the workplace needs of employees with High-Functioning Autism. The Job Accommodation Network, a resource endorsed by the U.S. Equal Employment Opportunities Commission (EEOC) provides additional examples of reasonable accommodations often used for individuals on the Autism Spectrum.

Employees have obligations too

The Employee also has responsibilities in the reasonable accommodations process. The Employee must make their Employer aware that they might need accommodations. The Employee must actively participate in the Interactive Process in order for it to be successful. In many cases the Employee may not know exactly what accommodation will work best, but they must at least identify the problem(s) they are trying to solve. Meanwhile, the Employer doesn’t have to provide the exact accommodations that the Employee requests, and may propose alternatives that so long as the same goal is achieved.

It’s also important to recognize that ADA protections are not a “get out of jail free” card for Employees, and there are certain extreme behaviors that an Employer is never required to tolerate (such as acts or threats of violence.) Also, ADA protections are not retroactive and do not apply to behavior that occurred before the Employee made their employer aware of their disability. This is why it is crucial to request accommodations before problems arise.

Finding the right accommodations

As part of the ADA-defined Interactive Process, the Employer must work with their Employee to determine what accommodations would enable the Employee to perform the essential functions of their position and/or “enjoy the equal benefits and privileges of the workplace.”

Although every individual on the Autism Spectrum is unique, many with High-Functioning Autism are likely to need similar types of accommodations. Common examples include:

  • Provide a mentor or “buddy” in the workplace – an empathetic colleague who is willing to provide support, advice, and assistance with integrating socially into the workplace.
  • Give clear and direct feedback if the employee behaves in ways that seem disrespectful or are inappropriate to the situation (such as interrupting others or telling a distasteful joke.) Identify areas for improvement in a fair and consistent manner.
  • Make sure instructions are concise and specific; do not assume employee will infer meaning from informal directions. When possible, provide instructions in writing, not just orally.
  • Locate employee’s office space away from audible distractions; and/or Allow employee to wear a noise-cancelling headset to reduce auditory stimulation.

Of course one size does not fit all. The range of potential accommodations is infinite and must be tailored to the individual employee. An excellent source of information is the Job Accommodation Network (JAN) which has a wealth of information on Autism Spectrum Disorders in the workplace.

When an Employee is too high-functioning

Individuals with high-functioning forms of Autism often develop compensating mechanisms that help them “pass for normal” to a greater or lesser extent. These individuals often develop strategies that help make up for their difficulty with executive functions as well, enabling them to succeed in professional careers. This cannot be construed to mean that individuals with High-Functioning Autism are somehow “less disabled” than other individuals with Autism Spectrum Disorders; it means only that they are able to use their intelligence to mitigate the deficits inherent to their condition.

The unfortunate Catch-22 is that such successful compensation leads Employers to believe that their employee is too high-functioning to require accommodation. This is why the ADA prohibits Employers from considering the effects of “mitigating measures” when considering requests for accommodations, and specifically classifieds learned behaviors and compensating mechanisms as forms of mitigation. Therefore the Employer is obligated to view the Employee’s underlying condition rather than the net result of their compensation.

Putting it all together

If the process works as it should, the Employer and Employee will agree on and implement accommodations that will help the Employee succeed in their position. Ideally the Employer will document the agreed-upon accommodations in writing and take steps to make sure they are properly implemented. It’s important to note that considerable confidentiality applies to accommodations; the Employee’s immediate supervisor needs to know what the accommodations are but is not entitled to know the details of their condition. Similarly coworkers only need to know that the Employee is subject to accommodations but do not need to know why.

When the process fails, Employees will generally need to seek resolution through their state disabilities commission and/or the U.S. Equal Employment Opportunity Commission (EEOC). These two entities automatically cross-file so a complaint filed with one normally results in a complaint automatically being entered by the other. Unfortunately this can be a long, drawn-out process and it can be difficult to negotiate a solution.

However you get there, having appropriate and reasonable workplace accommodations in place benefits both the Employee and their Employer. Most individuals on the Autism Spectrum have both unique challenges and unique skills. The reasonable accommodations process is time (and occasionally money) well spent. The Employee of course benefits from greater opportunities to succeed in their career pursuits, while the Employer benefits from a happier and more productive Employee, and a more diverse and inclusive workplace. The ADA, like the 55 MPH speed limit, is not just a good idea; it’s the law.

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