Diversity with Dignity: I support Autistic people's human rights in the workplace. Do you?

Autistic people are widely known for their tenacity to seek out social justice, even at the risk of their own reputation. Many Autistic people have an innate desire to do right by others and have no choice but to be truthful and transparent. For me, my drive to do the right thing goes far beyond living with integrity; it is in my wiring, in my making, a part of my soul.

When autism is viewed through a deficit lens—seen only as a medical condition, diagnosis, frailty, or stigma—segregation prevails. For once autism is set into the light of a culture—a marginalized people, with human rights, deserving of fair practices and equality—then the discriminatory actions cannot be as easily justified. Then, and only then, the activators of inequity can be called out. As long as the invisible dome of less-than is placed over the concept of "autism," the dominant group is able to justify their ableism and othering. A less-than perspective applied to the autism population enables others to feed their unconscious bias: to lead Autistics, teach Autistics, verbalize for Autistics, and to try to make Autistics more like them.

It’s vital to recognize Autistic people are a marginalized people and have only, in recent times, been recognized as an underserved and underrepresented group in the workplace. By and large, it's not uncommon for Autistic people to be taken advantage of by others. Serving in a position of global outreach, education, and advocacy, in the field of equity and inclusion, I am a witness to others' ongoing bias, segregation, and othering, against me and members of the autism community. 

Typically, the acts of discrimination come without the oppressors facing consequence or repercussions. 

Autistic people need well-informed allies, like you. We need your support. As a collective, Autistics have yet to form formidable, publicly-recognized coalitions, colleges, and brick-and-mortar organizations that provide a power for a people. And though the autism movement, turned neurodiversity movement, is becoming a unity of power, we have a way to go in facing oppressions. Many outsiders still don’t recognize the autism community as a culture and view autism one-dimensionally, as a deficit and disorder. A fact made clear by the dehumanizing-label “autism in the workplace,” in contrast to “Autistics in the workplace.” 

It is not uncommon for non-Autistic employment professionals or those in contract with large autism-hiring corporations, to reach out to me directly and ask for assistance in finding Autistic talent. In some instances, it is implied that I serve as the “middle-man,” without recognition or payment. A few years back, I had a lengthy phone call with a key corporate player in the autism-hiring field. I’d hoped to convince the individual to bring me on (for free) to educate managers at their firm on best workplace practices. This after hearing complaints from a non-Autistic manager working for the corporation. At the closing of the call, the diversity lead said, “Please remember to send top candidates my way.” They missed my entire point.

Sometimes common sense practices are tossed aside. For example, an Autistic at the heart of an autism hiring program makes sense. A person with an ASC profile will likely understand the autism community to a greater degree, in comparison to a professional from the general population. An Autistic employee will definitely have a clear understanding of life as an Autistic person. And those on the autism spectrum tend to be sensitive to detecting acts of inequities against marginalized people. An Autistic professional could feasibly serve as a communication link and networking bridge. They might also act as a workplace advisor, advocate, mediator, or community well-being manager. I have successfully served in each of these roles.

It is simple logic to place Autistic people at the center of autism hiring initiatives, at least to some degree. Yet, to date, I know of not one single company with a highly-publicized autism hiring initiative (other than Ultranauts Inc.) that purposefully has openly-Autistic individuals in paid human resource positions. Reflecting on the dozens of D&I panels I've served on, with leaders of neurodiversity hiring programs, I am usually the only Autistic (99% of the time). I have yet to meet one other person on the autism spectrum whose paid job role is to be a primary player in an autism hiring program. I've been at my current job for over six years and have spoken to 1000s around the world.

Most of us know enough to recognize a person with an ASC profile could easily fill a variety of job roles. Autistics could serve as inclusion strategists, payroll staff, human resource specialists, job coaches, and talent acquisition managers. Nonetheless, the Autistic job seeker is often pegged for roles in one department (e.g., technology) or slotted into lower-tiered positions. In worse case scenarios, according to a quality source, Autistics are kept busy with trainings or non-essential projects in the background, purposely made not to interact with important clients. In this instance, Autistics are used as a commodity, solely for company branding, and shut out and segregated.

Word of inequities spreads fast in the autism community and our voices (both speakers and nonspeakers), and our allies' voices, are rising.

I know of another Autistic professional who looks forward to departing from their (unpaid) position on a diversity board related to autism hiring, because this individual’s valid concerns and suggestions are ignored. Another Autistic, with a medical degree, has had their questions repeatedly discounted or ignored by key leaders in the autism-at-work circles. Autistics report of being ignored entirely, after having made an inquiry at an autism at work webinar or gathering, where none of the “role models” are Autistic. At one such event, I attended in late-2020, a male executive held up a training book about autism in the workplace with pride and a satisfied smile, and then announced to the national audience, something similar to: “They behave better when we use this.” If that isn’t appalling, I don’t know what is. 

I was recently informed that a successful individual with a doctoral degree had their intellectual property used (stolen) by a non-Autistic D&I leader of a large corporation. The D&I agent reaps the benefits of commodifying Autistics and public recognition, while having the audacity to use others' ideas and post them as their own on social media. This, if nothing else, underscores the persistent disrespect and disregard of Autistic persons in our business culture.

As is typically the case in Western society, money and allegiance matters. For-profit employment agencies and government agencies partner with corporations with autism-hiring initiatives. I’ve spoken to several of these agency leads over the years, or to their clients (Autistics). In my experience and in anecdotal reports, the agencies are typically greatly lacking Autistic representation, have no Autistic people in positions of power and authority, and are undereducated on autism in general. These business alliances come with cost-savings and time-saving perks for corporations. Such perks and financial gain make it easy to overlook the benefits of bringing actual Autistic people in paid leadership positions to the table. Some corporations would rather be attached to a recognizable name of a mostly non-Autistic entity than to the actual Autistic people. Brand and profit before people seems to be an overarching theme.

These agencies often recommend mandatory job coaching for Autistics, either during the job search or after being hired on as employees. I’ve had appointment no-shows with professionals supporting these programs. Seems they initially are set to meet with me, until they discover my concerns and connections in the autism community. Then they don’t bother to show up for the call, nor explain, nor apologize. Others will offer to gladly have a call with me, claiming they understand my concern, but when I suggest a time to speak, I am “ghosted.”

I’d like to point out that I am far from perfect. Yet I remain exceedingly professional and polite in my correspondences. In fact, my direct supervisor described my coworker and me as the most kind and compassionate individuals he knows.

Since I haven’t been able to connect during private correspondence, despite numerous attempts, I’ll write my thoughts out here:

Automatically assuming every Autistic person needs a job coach is a blatant act of segregation and othering, and serves to keep the autism community in a position of inferiority.

In my corporate presentations, I often ask thought leaders of large firms, those who care about the ongoing issues of autism discrimination and take the time to listen to well-studied Autistic educators, to substitute the autism population with any other historically oppressed people. Imagine if you will, all women being assigned a job coach automatically or assumed to need a job coach. Perhaps even asked to disclose when they are going through menopause (an assumption that all females do), in order to get certain workplace supports. This might be grounds for litigation or at least a substantial workplace grievance. 

Many Autistics, pushed through the traditional autism hiring initiatives, are forced to disclose their disability, without even a guarantee of a job and without true choice. I've thought long and hard about forced disclosure and segregated hiring practices, and I have started to call the opposite of this: "diversity with dignity."

Diversity with dignity means a human being is treated with dignity and not made to or expected to act in a certain way to gain equity and equal access to supports in the workplace. It means someone isn't forced to disclose a hidden disability and personal information, and face the huge risk of stigma and discrimination, to appease a system of hiring oppression.

Refer to Neurodiversity: Paving the Way to Universal Design Inclusivity in the Workplace for more information.

See Making the World a Safer Place here for more resources and information on this topic.

In order to meet job placement quotas and secure ongoing contracts, some fee-based job placement centers, tied contractually to corporations ($$), are known for placing Autistic people in jobs they don’t desire. I’ve heard firsthand accounts from disgruntled or disheartened workers in and outside of the U.S. Some with ASC profiles feel under-qualified for their new positions but at the same time forced to concur. The positive branding celebrated in the media is not what is happening behind the scenes. Autistics are repeatedly made to be subordinates. They are commodified: used to fill a quota and meet a profit margin. They are asked to share their stories without compensation for their time. They are asked to present on stage, while being treated with inferiority: ushered, directed, and guided by non-Autistics. Few, if any, are the (paid or unpaid) organizers or hosts of D&I or PR events. It's a rarity to see Autistics running the show.

A bit of research reveals the prime spokespeople of autism hiring programs are typically not Autistic people. (Tune into an all-white panel to learn how great our Black hiring initiative is going. You get the picture.) Non-Autistic spokespeople presume to speak for the Autistic population. Let's be clear. Most using us for branding and creating segregative practices are not our allies. Some feign expertise, even as they don’t know the basics of a culture of people. Some publicly share false data to seem connected and "in the know." Complexities are presented as basic and simple. Facts skewed and used for branding. Empty words for profit. I imagine my non-white friends and colleagues have experienced a long, unsettling history of similar business-branding fallout.

There is the aspect of token representation, not true equal representation, such as a lower-level Autistic worker (not a manager or business leader or owner) publicly displayed and asked to share the greatness of a company or how they were fortunate enough to land a job. There is the happenings of a group of Autistics encouraged to demonstrate an angle in a PR video: "I am more than my autism." Wait a minute, am I more than my womanhood? Am I more than my (insert ethnicity)?

Please take time to witness the content non-Autistic, self-proclaimed "allies" and "role models" of these "leading" corporations are sharing and compare their words to #actuallyautistic words. Seek out the hashtag #actuallyautistic and #autismacceptance. Tune into ASAN, neuroclastic.com, differentbrains.org, to learn about the autism culture from Autistic people. There is an underlying message, when Autistics are left out of the conversation, and not given a true place of power and voice at the table:

We don't truly care enough to take the time to learn about the autism community and culture from actual Autistic advocates.

I recently received a group query from a well-intentioned professional. A question was sent out to over fifty professionals (paraphrased) asking if any of us worked with someone with autism and if we could ask them what they prefer to be called. There was an assumption (implicit bias) that no Autistics were part of the professionals being addressed.

A better email: “Anyone who is an Autistic in this circle of experts, please feel free to reach out to me; I want to learn more about the autism community and your story.”

Autistic employees are sometimes treated like puppets: scripted and groomed. Watch some of the promotional videos. In the majority of instances (not all/some corporations are stepping up), you will note the Autistics portrayed are young, have little experience in the workforce, are not advocates or activists, and all are repeating similar statements of unity and agreement. They usually present as sweet, sometimes naive. They are typically the ones that have agreed to disclose during the hiring process, have fewer job seeking skills, have already been singled out in separate hiring programs or been assigned job coaches. There are 1000s of people who are successful in their career and Autistic. Employees not requiring a job coach or disclosure. (This isn't to imply they are treated fairly or with equity. Nor to imply job coaching isn't an effective approach for some. My partner is an Autistic and job coach for Autistics and non-Autistics alike. The key is choice.)

You'll note very few spokespeople are older generation Autistics, like myself and my partner. Little, to no effort, is made to openly represent the nonspeaking Autistics or Autistics with physical disabilities or Autistics who belong to the LGBTQIA+ community. Autistics are portrayed as one-dimensional. Intersectionality is rarely a topic of conversation. 

The mere act of asking someone to publicly go on record to say, "Thank you so much for hiring me," is demeaning. Substitute another people. I am visualizing a bunch of men on stage thanking a team of women for hiring them. The attention is often turned toward the success of the corporation and their great efforts and away from the individuality and personhood of the employee. Greatly lacking are openly-Autistic managers, senior executives, and similar representation. We aren’t tuning in to the doctors, lawyers, or CEOs who are Autistics. What results is a portrayal of Autistic workers coming across as inferior, in comparison to the superiors often directing them behind the scenes.  

Worthwhile, not-for-profit social justice organizations are known for partnering with some autism hiring programs; such organizations typically pull candidates from a pool of young adults to teach basic skills, like mock interviews and opening a bank account. For reasons like this, the autism hiring programs become exclusionary by nature. Left out of the job seeking pool are a significant portion of adults on the spectrum not requiring assistance with basic life skills training; and those Autistics not privy to support and services focused on a younger and more privileged population. Many older generation Autistics have ample work experience, skills, education, and vocational know-how. They wouldn’t even necessarily present as atypical in behavior. The older Autistics are far less apt to benefit from the way the majority of autism hiring initiatives are run. Most of us aren't in vocational programs or attending tech schools. There are many in the autism community in need of work requiring zero help getting through the employment door, but who need help feeling included and supported, once hired. 

One solution edging its way into new branding and talent acquisition approaches is to expand from an autism hiring program to a neurodiversity hiring program. At first, this broad-scoped diversity plan seems like a sound idea. A wider net of job seekers automatically negates sourcing restrictions. And, such a transitory measure has its benefits.

That said, I’d like for us to review the diversity metrics of the autism hiring programs before the companies, that gained from their autism hiring PR, transition to a new approach. I'd like us to examine how many Autistics were hired; to see not only retention rates but well-being in the workplace rates; to know how many are non-males, how many are non-white, how many are truly happy at their job. I'd like to see the data on how many recent hires are in positions of power and authority and to know the numbers of Autistic individuals compensated for their D&I representation. To count the Autistics in paid positions related to the initiatives, to note those who are part of governing boards. To look over the statistics on how many were segregated and forced to disclose. These are the metrics that matter. Not the metrics about how great a company is. It's time for a playbook about quality inclusion. A playbook about true belonging in the workplace. A playbook about how not to take advantage of an underserved people.

Recommended read: The Dark Side of Autism in the Workplace)

If you or someone you know is doing diversity with dignity, please let us know in the comment section. Feel free to include links. And thank you for being our ally and taking the time to be informed.

Author's note: This views are my personal views and are not intended to represent the whole of the autism community or the views of my place of employment.

Marcelle Ciampi M.Ed. (aka Samantha Craft), a respected Autistic author and international ambassador, is best known for her writings found in the well-received book Everyday Aspergers, endorsed by best-selling author Steve Silberman. Senior Manager of DEI at Ultranauts Inc., an engineering firm with an autism hiring initiative (featured in the New York Times), Ciampi is credited for largely-architecting an innovative universal design approach to workplace inclusion. Some of her works, especially the Autistic Traits List, have been translated into multiple languages and widely-shared in counseling offices, globally. A former school teacher, Ciampi has corresponded directly with over 10,000 individuals on the autism spectrum and been featured in various literature, including citations in articles, books, and research papers. Her upcoming book, Autism in a Briefcase: Straight talk about belonging in a neurodiverse world, is based on 3000 hours of study. Ciampi also contributed to the book Spectrum Women: Walking to the Beat of Autism and was recently accepted as a doctoral student in the field of organizational leadership and social justice. Marcelle is Autistic (Aspergers) with gifted-intellect, and dyslexic, dyspraxic, and hyperlexic, what she calls a ‘blended-neurodivergent.’ Two of her adult sons are also neurodivergent, as is her life partner.