Square Pegs: Autism in the Workplace
Square Pegs: Autism in the Workplace
An exploration into dual citizenship (homosexuality and autism) and changing the work environment for everyone's benefit. Presented for the Out & Equal conference in Minneapolis by Terry Walker, tiggerworld1 at earthlink.net, on 2003 October 2 Thursday.
Full ASCII text at http://home.earthlink.net/~mellowtigger/conf/SquarePegs-20031002.html
MS PowerPoint at http://home.earthlink.net/~mellowtigger/conf/SquarePegs-20031002.ppt
[Legal garbage]
You may reference this address, copy this material, or generally do whatever you want with the text you find here, provided that you are doing so for education and not for profit. The diagram, however, is not mine. I have used it with Dr. Luskin's permission, so you should contact her at the Autism Society of Minnesota (listed in Resources section) to secure your own permissions.
[For the impatient]
If you want the "quick tour" of this presentation, skip directly to the sections identified as:
Introduction
"I have a hidden disability." I've heard that this is the phrase I should use with an emergency worker if I have problems coping during an encounter with them. If I had a tendency to go nonverbal, then I would carry a wallet-sized card with this information printed on it so that I could hand them the card to read. Areas of my brain function in ways that are different from people whose neural wiring is more typical, "neurotypical" as it is called. I am autistic, and I want to explain autism to you so that you can understand the need for certain changes in society and in the workplace, changes that would benefit all people, not just autistics.
In college, at age 19, I was already becoming involved in education as a process for generating social and political change. I participated as a gay man in "speakers bureau" panel discussions, speaking in whatever classroom the panelists were invited to attend. I gladly sat before those classes, expecting to educate by example. A single living specimen, proof standing before your eyes, is a persuasive tool for changing ideas. I normally retreat from public contact, but I braved my fears and did it anyway because I felt even more passionately about the need for providing this educational example. I knew that the presentation was necessary in order to confront terrible stereotypes and other false information about queer people.
My intellectual conclusions 16 years ago were correct, and my efforts then were apparently worthwhile, because now I am able to attend for the second time an Out & Equal conference. More than 600 people gather here from around the world to focus specifically on the workplace and then discuss how best to produce changes that will make careers more fulfilling for queer people everywhere. It is our expectation that by improving the satisfaction and productivity of people in the workplace that even greater changes will then filter into the broader society and benefit everyone.
I agree with this expectation, and so today I stand where the queer community itself is my audience in order to make a second step for education and sociopolitical reform. I was pleased when Out & Equal announced a call for (among other things) "dual citizenship" workshops for this year's conference. I think it is a good idea for GLBT resource groups to find ways of maintaining their successful momentum by expanding their horizon for needed workplace changes, even as they near completion of the changes that directly benefit the GLBT minority. So this time I will speak as an autistic person to point out one possible direction for further resource group activism.
I want to educate about autism, dispel some false stereotypes about it, and hopefully build a foundation for future cultural shift by a movement currently identified as Neurodiversity. One lesson that neurodiversity can teach is that humans arrive in this world with a variety of different strengths and weaknesses because of their different neural "wiring". It is in our collective interest to enhance those strengths and accommodate those weaknesses, thereby raising overall productivity throughout our workforce and overall satisfaction throughout our society.
In order to build this base, I need to convey 4 realizations to you concerning autism: what it is not (dispelling stereotypes), what it is (educating), why it should be linked with gay advocacy (connecting), and what improvements are within our power to make in the workplace environment (moving forward for change).
As with the gay speakers bureaus from my past, I must begin with this very important disclaimer: I can speak only for myself. I will try to relate my experience and my knowledge to you, but one autistic person cannot advocate on behalf of all autistics any more than one gay person can speak for all queer people everywhere. Please remember that I offer this information as a personal contribution. It should not be construed as an official statement or as professional advice from any other person or group.
I am gay, and I am also autistic. Autism has affected my life from even my earliest childhood memories, around age 3. I was only recently diagnosed, at age 35, so my familiarity with terms and theories is still limited. I am also unsure about the needs of autistics who live with some degree of mental retardation. I have a quick intellect, so my suggestions and workplace experience are admittedly biased towards the high-technology environment that I am familiar with. Nevertheless, as I did in college, I feel that it is my responsibility to present this information simply because of its potential benefits and because I find myself at the proper time and place to make the presentation.
(goal: dispelling stereotypes)
Autism Is NOT...
From the Autism Society of America (ASA) website on characteristics of autism:
"One of the most devastating myths about autistic children is that they cannot show affection. While sensory stimulation is processed differently in some children with autism, they can and do give affection. But it may require patience on a parent's part to accept and give love in the child's terms."
(goal: educating)
Autism IS...
frequently encountered experiences:
Some Autism History
1940s: Kanner's and Asperger's autism identified
1991: Asperger's autism rediscovered
1993: Asperger Syndrome enters DSM-IV
Some Autism History
From 1938 to 1944, Leo Kanner at John Hopkins Medical School in Baltimore Maryland studied 11 unusual children, and in 1943 he named a new disorder as "autism" (specifically, "early infantile autism"). Children with this form of autism often showed mental retardation, impairments in speech or verbalization, or other issues that caused significant problems with their socialization.
For many years, "Kanner's Autism" was thought to be the only form of autistic impairment. Eventually, people began to question if these other factors were truly necessary conditions for autistic behavior. Research into autism in the 1980's led to the 1991 translation into English of decades-old observations about a different expression of autism.
At the same time as Kanner made his observations, Hans Asperger in Vienna Austria during World War II studied another group of unusual children, and he also named a new disorder using the name "autism" (specifically, "autistic psychopathy"). (His observations remained unrecognized throughout Europe for decades, and his clinic was bombed during Allied attacks.) When researchers rediscovered his work in its 1991 English translation, they saw evidence that some autistics are articulate, creative, and capable of surviving in society with minimal assistance. "High-functioning autism" in its various forms gained interest from researchers and other interested parties.
The addition of Asperger Syndrome to the DSM-IV in 1993 opened an autism diagnosis to a new population of people. Adults began to recognize themselves in its description, so there has been a wave of adults (rather than children) being diagnosed in the last decade with this newly recognized form of autism.
Adults With Autism
Q: What happened to the autistic children of yesterday?
A: They grew to become the autistic adults of today.
From "Autism: Explaining the Enigma" by Uta Frith, page 1:
Those familiar with images of children who suffer from other serious developmental disorders know that these children usually look handicapped. In contrast, more often than not, the young child with autism strikes the observer with a haunting and somehow otherworldly beauty. It is hard to imagine that behind the doll-like image lies a subtle yet devastating neurological abnormality.
What is this abnormality? How can one explain its many paradoxical features? These are questions that I shall try to answer in the course of this book. I will start with removing some obstinately persisting misunderstandings. The first of these is the idea that autism is a disorder of childhood. You hear a great deal about children with autism, far less about adults. In fact, autism starts to be noticed in childhood, but it is not a disorder of childhood. Instead it is a disorder of development.
In other words, yesterday's autistic children are now today's autistic adults. They are already here, and they are trying to be a part of the workforce. Their continuing difficulties with sensing and socializing, however, lower their productivity and reduce their career opportunities.
Autistic Strengths reviewed for the workplace
Autistic Weaknesses reviewed for the workplace
(goal: connecting)
Allies and Advocates
Q: Why link autism advocacy with gay advocacy?
A: They already share many similarities, and both communities would benefit from the association.
Why link autism advocacy with gay advocacy?
The short answer is that I'm certain both communities would benefit from the association.
The experience of being gay is not the same as the experience of being autistic. I am both, and I recognize this difference. The experiences, however, do have similarities in both their fundamental nature and their historical background. (I'll explain those two points in a moment.) Furthermore, I think that these ties could and should be strengthened as part of the emerging Neurodiversity movement. GLBT, Autistic, and Allied people would make a strong force for change in social attitudes and business practices concerning "differently-brained" employees. I encourage these communities to interact in pursuit of that goal.
Fundamental similarity
Both communities share the "minority experience", the frustration of feeling compelled to adjust to social expectations in a larger world that was designed for different norms. We share a need for restructuring society in a way that will allow us to participate fully. We share a need to disarm or defuse those people who would seek us with the intent to harm us, even if those people are our own family. We share the experience of being born into a life that our family and our society did not plan for us and cannot easily prepare us for living. We share a need for advocates who will speak on our behalf when we are either unheard by the majority or when we are simply unable to speak out for ourselves. I suspect that medical science will also show that we both have brains whose structure is different from the "standard model".
Historical similarity
Both the gay and autistic communities must credit the psychiatric establishment with initially defining and naming us. Unfortunately, both communities were also subsequently ill-served by many of those medical professionals who claimed a desire to help us. We now share a need both for the authority to deny our inaccurate label of "abnormal" (we are clearly different, we are not clearly defective) and for the right to make an informed refusal to treatments that are designed to "correct" our difference.
We sometimes share the experience of being born into families not quite like ourselves, so the "unit of membership" for our communities is frequently the individual rather than the family. This difference may result in tension between family and community until the family learns to accept its unexpected tie to a new sub-culture. Many of us share an initial social disadvantage because of our inability to participate in social relationships during our formative teenage years. (Queer people, however, tend to recuperate from this early disadvantage and eventually outpace their autistic compatriots.) Sadly, we also share a history of imprisonment and persecution by Nazis during the Holocaust. (The mentally retarded, lesbians, and other social misfits wore the black triangle in the concentration camps, while gay men wore the pink triangle.)
Future similarity?
Both communities can play an important part in the coming Neurodiversity movement. Our own lives can easily be the example that we present as we make the argument that some people are inherently incapable (not just recalcitrant but actually incapable) of functioning by the dominant social rules and expectations. We already know that failing these expectations can presently result in a variety of consequences, including the loss of a job, the loss of self-esteem, even the loss of legal freedoms. We know that individuals affected by these consequences then carry their loss into the larger society which must eventually find its own way to adjust to the problem. Because the workplace is such a contained, definable, and manageable environment, it is therefore a key area where small improvements in policy can be implemented. We also know from experience that those improvements can produce profound changes upon society as a whole as the after-effects ripple from one environment to another.
The gay community should attempt to learn more about autistics. The knowledge and perspective that they gain may surprise them. For instance, it seems (anecdotally only) that gay people are represented in the autistic community at a rate above the expected 10%. Also, one theory about autism explores the relationship between traditionally female traits (socializing) and male traits (systemizing), asserting that autism results from a brain that's even more male than neurotypical males. Perhaps autism can introduce a new dimension (rather than just sexuality) to our community's understanding of male identity. And, most importantly, autistics may provide the queer community with its one and only innately non-hostile audience. My impression is that autistics favor simplying the social order to improve their own understanding of it. Judging relationships based on the participants' gender, skin color, age, income, and other factors is just too complex. Autistics dislike hypocritical complications to an already over-complicated social world. Instead, we seem to prefer one rule, one law, applicable to everyone. Simplicity that also happens to be social justice! Queer folk should investigate this natural alliance with the autistic community.
Likewise, autistics could benefit from the queer community. A significant portion of the autistic community is non-verbal, either fulltime or temporarily during crisis episodes. We need assistance not just figuratively but also sometimes literally with finding our voice and speaking about our needs. Also, organizing social activities is rarely one of our strong points. I've never even heard of an Autism Pride Parade, and many of us do not tolerate crowded environments anyway. The autistic community needs allies to assist it in moving through the neurotypical bureaucracy and in bringing autism to the attention of our larger society. The queer community is already skilled at doing these things for themselves, and it would require no great effort for the GLBT community to introduce autistic needs into workplace discussions. With that preparation made, autistics might find a more receptive audience as they learn to ask for changes that they need. (I'll explain specific workplace changes later.) Finally, the autistic community may be able to learn from queer culture to accept "self-identification" of its population rather than external clinical diagnosis. (They may have already accomplished this goal by accepting "Cousins" as members on the autistic spectrum.)
There are too many similarities, too many potential benefits, to ignore the possibility of a strong alliance between the gay and autistic communities. Even when we limit our discussion to just the workplace environment, the possibilities are quite intriguing.
(goal: moving forward for change)
Resource Group Suggestions
Workplace Accommodations
Here are some concessions/changes that employers could make to ensure the participation of autistics in the workplace. Employers would need to work with employees in establishing the zones where concessions will be made. There will be obvious differences in possibilities between office work and manufacturing.
It may also be reasonable to negotiate lower salaries in exchange for reduced hours or workloads, if such changes are needed to meet the "reactive/planning" concessions described below. Cost for "sensory" or "social" concessions, however, should not be passed directly to the employee.
Note that some of these concessions are already being implemented because enough neurotypicals felt strongly about wanting them. Remember that autism may be an extreme version of traits and sensitivities that all people share to some degree. I expect that changes made specifically for autistics may also be popular with a sizable portion of the neurotypical workforce. Autistics would benefit most from these changes, but every person would benefit to some lesser degree.
Miscellaneous Information
"Curing" Autism
Fitting in temporarily is absolutely a valuable skill. Just because we are capable of mimicking these desired behaviors for a short time, though, does not mean that we should be obligated to do so for a lifetime.
You may hear the medical establishment speak about the importance of diagnosing autism in children. The intention is to identify autistic disability so that intervention may begin as soon as possible, teaching specific social skills that other children would discover instinctively without instruction. Early, comprehensive intervention is said to be very effective in teaching autistic children to interact socially. It is certainly beneficial to learn how to accomodate the needs of others, how to "fit in" or at least communicate effectively with a group. These intervention efforts are valuable for this purpose, and reaching people as early as possible will probably make the lessons easier for the children to incorporate into their daily behavior.
This education makes some autistic adults uncomfortable, however, because some of us see it as dangerously similar to brainwashing. It is easy to compare this social training with the encouragement of left-handed people to develop right-handed skills or the expectation of gay people to live heterosexual lives. Fitting in temporarily is absolutely a valuable skill. Just because we are capable of mimicking these desired behaviors for a short time, though, does not mean that we should be obligated to do so for a lifetime.
Our lives are more fulfilling when we embrace our differences, retaining the innate qualities that distinguish us from others. It is certainly helpful to learn how to accomodate the needs of others, such as when left-handed eaters switch to right-handed use of utensils to avoid disrupting the dining experience of other eaters at a crowded table. But it is far more satisfying to all of the eaters if accomodations are made for left-handed people to eat where their elbows will not cause distractions, such as at the left end of a table.
Autistics are beginning to demand the same accomodations for their unique needs. Teach us how to "fit in" when necessary, yes, for those moments when social conformance is truly important. But don't try to suppress or eliminate our native behaviors entirely. Some autistic adults construe such attempts as acts of harm perpetrated against us. We are better served by learning to keep ourselves intact amidst a world designed for different standards; we are better served by changing those standards so that we have a proper home in society.
Metaphors for autism
Autism Vocabulary
Words and phrases that you will encounter if you spend time with the autistic community
Neurodiversity Vocabulary
Other ways of thinking
Theories of Autism
Keep in mind that the autistic community, like the gay community, is sometimes harshly critical of any attempts to "cure" persons with their unique quality or to prevent new births of people like themselves. I present these theories only to provide a more complete exploration of autism, not to establish a basis for using corrective measures against autism.
When faced with the diversity of theories on the origins of autism, the only certain conclusion that can be made is that there is no conclusive theory yet. That uncertainty is why so many different options are being explored. It may be true that autism can result from any one of a variety of causes, like blindness, deafness, or high blood pressure may result from a variety of causes. It could be inherited genetically, induced by chemical contamination, triggered by prenatal developmental changes, or a host of other reasons.
Counterpoint
Lest I create the false impression that autism is never a severe disability for some people, I must point out that autism is a biological difference with serious medical implications (comorbidities, in the medical terminology). It affects some people more dramatically (and negatively) than others. Sympathetic workplace changes are not enough to remove the problems of the entire autistic community. In addition to what I have described previously, autism may also occur with these sometimes-debilitating effects:
Resources
Dr. Barbara Luskin and the Autism Society of Minnesota can both be contacted via the AuSM website, http://www.ausm.org/. If you do communicate with them, please mention that you learned of them from this workshop material. From that disclosure, perhaps we can informally gauge the impact/distribution of this presentation.