In 2022, at the age of 32, I was diagnosed[1] with Level 1 Autism Spectrum Disorder (ASD), formerly known as Asperger's Syndrome. ASD is a neurodevelopmental disorder characterized by difficulties in social communication and restricted behaviors or interests. A neurodevelopmental disorder develops during infancy, resulting in a set of neurological differences in the brain that lead to atypical brain functions.
I proudly identify as an autistic and neurodivergent person. Learning about ASD has allowed me to identify discrimination, advocate for accommodations, and give a name to my atypical experiences such as masking and autistic burnout. I can also showcase my autism superpowers while noting that it comes at the cost of my autism symptoms.
I know now that there is nothing wrong with me. I am just different.
Due to the complexity of neurodevelopmental disorders, each autistic person is impacted differently by their own set of symptoms. My symptoms of Autism Spectrum Disorder (ASD) include:
Deficits in social communication and social interaction across contexts:
Restricted patterns of behavior, interests, and activities:
I can temporarily overcome some of these social challenges by masking. Most people, such as my clients, would never know that I am autistic. In fact, I consistently achieve customer satisfaction scores and receive spontaneous praise far beyond what my neurotypical peers attain.
However, masking is exhausting and I can't keep up the act all of the time. People that spend extended time with me, such as peers and managers, would experience my more authentic, autistic self. I have experienced enough hardship to realize that, without accommodations, I will eventually experience discrimination and autistic burnout.
I am fortunate that the neurological differences in my brain also have a unique, beneficial impact. My autism superpowers include:
These traits can be incredibly valuable when applied appropriately. That's why I work in IT! The IT field involves ever-evolving complex systems with a demand for swift, accurate, and/or innovative solutions. When it comes to IT, I typically perform 250% more work at a higher quality than my neurotypical peers. That value is worth taking on some social deficiencies, don't you think?
Autism Spectrum Disorder (ASD) is a neurodevelopmental disability in which, during infancy, an autistic child’s brain grows in an atypical way. ASD can be accurately diagnosed by age 2 and persists throughout life.[2]
Each autistic brain will be shaped differently, expressed as symptoms that vary in type and severity.[3] It is unlikely that any two autistic people will experience an identical list of symptoms, though many will have symptoms in common. The criteria for diagnosis of Autism Spectrum Disorder involves two main components:[4]
Persistent deficits in social communication and social interaction across multiple contexts
Restricted, repetitive patterns of behavior, interests, or activities
These two criteria are also rated for severity. Severity is described in 3 levels: Level 3 – requires very substantial support, Level 2 – Requires substantial support, and Level 1 – requires support. Any diagnosis of ASD requires that the autistic person have symptoms that cause "clinically significant impairment in social, occupational, or other important areas of current functioning".[4]
The neurological research is still ongoing, but accepted studies have shown that autistic people have differences in:
Since differences in brain structure are varied in each person, an autistic person is likely to have a comorbid neurodevelopmental condition. Comorbidity describes the notion of two conditions existing simultaneously in an individual. Of the autistic population, 56% also have an intellectual disability, 30-50% also have Attention Deficit and Hyperactivity Disorder (ADHD), and 20% also have epilepsy. And because they interact in a neurotypical world that does not understand them, 79% of autistic people have a comorbid psychiatric disorder like depression or anxiety.[9]
As we have come to understand autism better, the number of autistic people diagnosed in the United States in 2020 increased by 400% compared to 20 years prior. As of 2022, around 2% of children in the United States were diagnosed with ASD.[10] That statistic only considers children diagnosed who would now, in 2023, be between 11-31 years old. It does not include adults 32 years or older, or people who went undiagnosed due to masking or lack of access to professional services. It may be safe to assume that 4% of the United State's total population (around 13 million people) are autistic. Without accommodations, these millions of autistic people experience discrimination and hardship.
Neurodiversity is a proposed framework that claims that people experience and interact with the world in many different ways, with no "right" way. Judy Singer, who coined the term in the 90s, did so to promote equality and inclusion of "neurological minorities."[11] Neurodiverent people include those with atypical neurological developmental resulting in Autism Spectrum Disorder (ASD), Attention Deficit and Hyperactivity Disorder (ADHD), Dyslexia, etc. It is estimated that 15-20% of people are neurodivergent.[12]. Neurotypical is the term often used to refer to an individual who as typical neurological development.
The use of neurodiverse language is powerful. It uses inclusive, nonjudgemental terms and avoids terms like "disabled" and "disorder". I am not "a person afflicted with autism". I am "an autistic person". Accepting the neurodivergence paradigm means accepting that ASD is not a set of traits that needs to be fixed, but rather a different set of traits that can contribute unique value.
Reports have shown that autistic professionals can be up to 140% more productive than their non-autistic peers when in a fitting role.[13] In my experience, I have consistently been 250% more productive than my non-autistic peers. Leveraging neurodiversity should be an active goal of organizations looking for a competitive advantage. Harvard Business Review's Neurodiversity as a Competitive Advantage is an excellent starting point.
To avoid discrimination, most of us on the autism spectrum intuitively learn how to "mask". Masking is the act of suppressing autistic traits and intentionally emulating neurotypical behaviors. We make an effort to maintaining eye contact, smile, laugh, and use prepared social scripts that makes neurotypical people feel like they are engaging with another neurotypical person.
Let me tell you: it's exhausting. I have an effective mask. I can seem polite, joyful, engaged, and excited. I can laugh at jokes at the right time and even contribute a few of my own. Anyone who has interacted with me for less than 30 minutes at a time would never know that I am autistic. My customer satisfaction scores are consistently higher than my neurotypical peers and I tend to receive more unprompted praise than my neurotypical peers.
After those 30 minutes are up, my mask takes too much effort to keep on. I can tell the moment that my mask starts to fade because others will look at me mid-conversation like something is wrong. Perhaps my eyes repositioned toward the middle distance or my posture shifted to suggest that I'm not interested. If I don't wrap up the interaction and leave, others will start to misinterpret my autistic traits and the social relationship falters.
Masking is just a bandaid, not a solution. The stress of hiding our real identities or being misunderstood or judged every day takes its toll. Sooner or later it leads to autistic burnout.
I love this definition form Dr Dora Raymaker in Understanding autistic burnout:
Autistic burnout is a syndrome conceptualised as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterised by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.
Imagine talking to your coworker and they say "Tell me the square root of 52 right now or we won't work well together." Every meeting starts with "Let's go around the room and each of us will quickly multiply two prime numbers together before we start the agenda." Rumors spread that you don't belong there and the math equations become more difficult. Finally, you get pulled into your boss's office and they say "Your performance here is suffering due to your poor math skills. If you can't improve, we will need to fire you."
In this scenario, your work environment consistently holds expectations for you to perform math in your head beyond your ability to do so. You think to yourself "Maybe they're right. Maybe this company isn't a good fit for me." Yet, no matter where you go, the expectations are the same. No matter how hard you try, you can't do that math in your head. Your career reaches a glass ceiling and no one likes working with you. Feeling stressed yet?
Processing social situations requires areas of my brain that are atypically developed. The regions of my brain required to process a social or emotinoal situation in real-time is limited—just as your ability to do math in your head is limited. It's not that I am incapable of navigating social situations, it's that I am incapable of navigating social situations quickly. You could probably do the math if you were accommodated more time, or a calculator. Too bad there's not a social-emotional calculator that I could use in real-time.
Yet awareness of autism is still in its infancy and social interactions are stressful. Look at my resume and note the time spent at each job. That's how long it takes for the stress of daily discrimination to overwhelm my nervous system. I can tolerate it for about 6-18 months. After that, I hit a point of total mental breakdown. I am compelled to quit my job just to begin recovering. I wind up in a state of extreme fatigue, agitation, and existential dread for months during a time without income or support. Note how long I spend between jobs. About 3 months. That's how long it takes for me to recover and try again.
Once I learned about autistic burnout, it made so much sense.
The stress came from suppressing autistic behaviors while masking. It came from unattainable social expectations. It came from loud, social spaces designed for neurotypical people. And the stress was compounded when others dismissed my experiences by saying that everyone experiences this, that I could be better, and that I just need to try harder.
Autistic burnout has a very serious impact on my life. Mitigating autistic burnout means being autistic in the workplace, amongst my peers. And being autistic in the workplace requires accommodations.
The Office for National Statistics, responsible for the collection and publication of statistics related to the economy, population and society of the United Kingdom, published data that shows that 78% of autistic adults were unemployed in the UK in 2022. In fact, autistic adults had the highest rate of unemployment compared to any other disability.[14] I have been unable to locate official data for the United States, but the prevailing statistic listed in publications is that 85% of autistic adults are unemployed in the United States.
Discrimination permeates the experience of being autistic. Each time I have taken an extended leave from my career, it was because I had experienced autistic burnout and quit, after exhausting diplomatic options, to escape an abusive work environment. Even in the face of my high value, excellent performance, and good intent, I was still discriminated against. I couldn't seem to work hard enough to mitigate it.
I have had a corporate Vice President tell me that I am a "negative person", that being negative is a personal choice, and that I should seek therapy. They told me that my demeanor was not in line with corporate policy, threatening my job. In one meeting, they told me that I am "seen as the enemy". When I mentioned that I was neurodivergent, they asked "What is that?" She was on the DEI&B executive team, by the way. Eventually, they required my direct manager to provide me with a performance improvement plan—against his recommendation—to start the process of firing me.
I have had a corporate Director tell me that I need to "bend the knee" and "comform" if I wanted to work there. They suggested that I read Dale Carnegie's How to Win Friends and Influence People if I want to succeed in my career. They would repeatedly tell me that "maybe this company isn't for you", encouraging me to quit. After experiencing a panic attack at work, as a direct result of these experiences, I was sent home to work remotely and I was not allowed back into the office for three months. When I was permitted to return, my work responsibilities were both demoted and increased.
I have had a Manager formally demand that I "create a collaborative environment for all employees" and, if I couldn't achieve that, I would be fired. He relayed the feedback received from my colleagues: "Jeff is arrogant and disrespectful. He is constantly interrupting others during meetings and doesn't know how to read the room." When I mentioned that I was speaking to colleagues to get their insights on my work challenges, this manager told me that I acted inappropriately and that "When I have a problem, I keep it to myself."
I have had a co-worker tell me that I am "tactless", that I have a "superiority complex", and that I get involved where I'm not wanted. This same co-worker would later provide feedback in the company's formal feedback platform stating that I should "be careful, because an emotionally unstable person might hurt you some day." When reported to HR and leadership, nothing happened.
All those examples I listed were from the same company in a span of about one year. It permeated from my peers up through three tiers of leadership. These aren't isolated events. These represent my common experience. I have dozens of stories like this. Even now, I feel ashamed to describe my experiences publically. I can hear echoes of these people saying "just get over it" and "you're making up to get your way" and "you aren't trying hard enough".
I have been a practicing Zen Buddhist for 12 years. I have had the privilege of practicing Mindfulness meditation with college professors, with Tibetan monks, and with Andy Puddicombe, founder of Headspace (I used to work there, by the way). My bookshelf includes titles like Crucial Conversations, The 7 Habits of Highly Effective People, Conscious Business, The Five Dysfunctions of a Team, Dare to Lead, and dozens more. I have stacks of Harvard Business Review. I have spent thousands of dollars on therapists. I have adopted medications to mitigate the symptoms of comorbid depression and anxiety. I have done all of this in my own time, with my own money, with my own intrinsic motivation in attempt to mitigate hardship.
There is nothing more I can do on my own. I know that there is always room for improvement. I am a strong proponent of a "continuous improvement" mindset. I will always strive to improve for the betterment of myself and others. But now I know that the expectations of others exceed my human capabilities. I know that the only way that I can achieve the same success as my neurotypical peers is through accommodation.
Without a doubt, the strongest accommodation I can ask for is awareness. I just want to do a good job. I am pleading: take a moment to try and understand.
The ADA National Network has an excellent article for Individuals With Autism Spectrum Disorder and Employment. The gist is that the Americans With Disabilities Act (ADA) ensures that qualified autistic employees have the same employment opportunities as their non-autistic peers.
Title 1 of the ADA states that no employer (as defined in 42 U.S.C. §12111(5A)):[15]
shall discriminate against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment..
A qualified individual is determined on the basis that an autistic person can perform their essential job functions with or without reasonable accommodations. Essential job functions are tasks, defined by the employer, that are central to the job and removing them would fundamentally change the job. Reasonable accommodations are changes to "the way things are" that allow an autistic person to perform their essential job functions, so long as they do not cause undue hardship to the employer.
My strengths are in technical systems, processes, working with technically people for long periods, and working with non-technical people for short periods. Job functions involving the support, administration, architecture, development, or implementation of computer systems will exceed performance expectations without accommodations.
Empirically, my symptoms significantly affect communication and socialization in the workplace. It is a common experience for individuals with Level 1 ASD to be misunderstood due to their formal use of language, monotonous tone of voice, and limited emotional expression. You can gain insight into this through this hilarious and sadly accurate skit that illustrates what it's like for an autistic person to interact with colleagues.
If you read through the examples of discrimination that I have experienced, it was misinterpretation of my autistic traits and an assumption of negative intent that damaged my working relationships. The double empathy problem suggests that non-autistic people experience communication breakdowns with autistic people, and vice versa. As 95% of the world is not autistic, it is understandable that non-autistic people might not be aware of autistic traits and would misinterpret them as negative non-autistic traits.
The most powerful accommodation I can request is awareness of Autism Spectrum Disorder and to maintain an assumption of positive intent. In working with various therapists reviewing my job functions in prior jobs, they could not find any symptom of ASD that conflicted with my responsibilities. The friction at work was entirely social. I decided to publish this article on my webpage as an easily-accessible and memorable means of spreading autism awareness.
Additionally, providing articulate feedback in a written form truly helps me understand what I can improve. Spoken language is often steeped with contextual meaning or idioms that I cannot navigate in real-time. When someone takes the time to write something out, they can more accurately articulate what they mean and I can more accurately ask about specific language.
Lastly, I'd ask that major changes to process or policy, or emotionally critical conversations be mentioned to me in advance of their primary discussion with an expectation that we may need to pause and follow up again later. I may not be able to process and react in the manner that I would like in real-time. The buffer of time gives my brain the opportunity to process the context.