Rethinking Diversity

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Here’s a story: My family and I relocated from London to Silicon Valley, California in 1999. A couple of years later, when my older son, Ty, was about 7 years old, he made friends with two boys at his school who both exhibited strange behaviour. One boy would not know when to stop playing, and if the play involved any kind of fighting, would take this to the point of actually inflicting pain on other children. The other boy was very averse to being touched at all, not even letting his mother hug him—so difficult for her, she confided. A few times Ty would come home from school hurt (once physically) or baffled, saying he didn’t want to be friends any longer, with one or the other.

It turned out that both boys suffered from Asperger’s Syndrome, although “suffered” may be an unfair and inaccurate term, given that they both functioned well, and seemed happy. The syndrome manifested as a lack of certain social skills, including the rather crucial one of empathy. Ty’s mother and I had never come across this diagnosis before, and were intrigued. We researched, we talked to the mothers of the boys to learn more and between us all attempted to figure out ways to help our sons interact successfully. It is pertinent to this post to mention that we had also met two or three parents who had children diagnosed as autistic, one family had three autistic sons, each with a different manifestation, allowing different levels of social interaction. Again, meeting families with autistic children was new to us, and we wondered why we hadn’t encountered this in London. Just circumstantial, we concluded.

Or maybe not. A couple of years later, working at a large Silicon Valley internet company, I first came across Scrum—a method of working that requires developers to collaborate closely, and ideally work in the same room, without cubicles. Knowing a little about Asperger’s Syndrome at this time, I had observed quite a few developers I thought fitted the profile, which often included a tendency to isolate. I began to wonder how they would fare in a Scrum environment. I searched the Scrum groups and literature, but found nothing that addressed this. I did however find a very interesting article in Wired magazine, The Geek Syndrome, written in 2001 by Steve Silberman [1], which talked about the rise of Autism and Asperger’s Syndrome in Silicon Valley, and offered possible reasons for this [2]. More interestingly, and personally, it offered me a different way of understanding Asperger’s Syndrome, seeing it not as an illness but as a difference [3].

Psychologist Lorna Wing, coined the term Asperger’s Syndrome in 1981, building upon Dr Asperger’s, 40-year-old, and largely forgotten, intuition that even certain gifted children might also be autistic. She described the disorder as a continuum that “ranges from the most profoundly physically and mentally retarded person…to the most able, highly intelligent person with social impairment in its subtlest form as his only disability. It overlaps with learning disabilities and shades into eccentric normality.” In other words, slightly eccentric people and severely autistic people have the same disorder, now commonly known as Autism Spectrum Disorder (ASD). In 1994 Asperger’s Syndrome was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), but removed less than ten years later as it was agreed by the manual’s compilers that ASD embraced this diagnosis [4].

More recently, Psychologists Joe Griffin and Ivan Tyrrell have expanded upon Wing’s work, differentiating between left-brain and right-brain autism, and coining a new term for the extended spectrum: caetextia, a term meaning “context blindness”. Very simply, the difference between left-brain and right-brain caetextia is this: left-brain caetextics cannot make connections between events, and right-brained caetextics make connections where none exist. Both are described as expressions of Asperger’s, with an interesting difference: “…we believe that the prevalence of Asperger’s syndrome in women is underestimated. We would suggest that females are much more likely than males to suffer from right-brain caetextia, and that clinicians are not yet recognising this expression of Asperger’s syndrome.” [5]

Here’s another story. In 2010 I befriended a woman, I’ll call her Myrtle, who was an exceptional artist, and one of the most brilliant thinkers I’ve met. She fascinated me with her breadth and depth of knowledge about a wide range of subjects, and I loved listening to her, and learning. I also found her very frustrating to be with, as it seemed the whole world was centred on her. She expected me to drive her to obscure coffee shops, she had become fixated on, just so we could talk, and when we talked she tended to talk at me rather than with me. I tolerated this, as I was enchanted with her, but eventually, being somewhat irritated I asked her about these traits. She told me she was autistic and unable to pick up on social cues, hence all the demands and self-centredness. She asked me to help her be aware of what was going on around her, as she really couldn’t detect it. This surprised me, of course, as although somewhat enlightened about Asperger’s I still had the biased idea that being autistic meant, essentially, incapable of functioning.

Being the brilliant thinker and investigator she was, naturally Myrtle had learnt a lot about her condition—which was actually a self-diagnosis—and she proceeded to enlighten me. Common to most autists she had the ability to focus sharply on one thing, and see it through to completion. She could wax lyrical on many subjects, but struggled greatly to express herself in writing, becoming deeply frustrated, even angry. She described to me many things, but the key distinguisher I remember clearly from that conversation was her claim that autistic women, far from being unable to empathise [6], actually had  a tendency to over-empathise, and for Myrtle, feeling so strongly that which others felt left her feeling exhausted and drained. I’ve since learned that this sense of being overwhelmed is why many autists avoid eye-contact: too much information, leading to distraction. Overall, the description Myrtle offered of her condition turned out to be very aligned with what I learned a few years later when I discovered caetextia. Myrtle, it would appear, suffered from (or perhaps was blessed by) right-brain caetextia.

Griffin and Tyrrell’s work offers a new way of thinking, and labeling of ASD which naturally lends itself to a more compassionate understanding of the disorder, where perhaps, in the milder cases, the term ‘disorder’ may be dropped altogether. More importantly, the increased understanding allows those suffering on the extremes of the spectrum to be treated effectively, as suggested by the human givens approach to mental health [7].

To my knowledge, the work of Griffin and Tyrrell, and indeed the growing body of research on Asperger’s over the past fifteen years (i.e. since the Wired article was published) have barely found their way into the business world, and certainly not into the Agile world, where, quite honestly, there appears to be little room these days for innovation. So it was with some joy that I heard about Dr. Sallyann Freudenberg’s work on neurodiversity, e.g The case for Neurodiversity and Why you want an Autist on your tech team. It’s about time. Dr Freudenberg, like Joe Griffin, speaks from a very personal perspective, and a deep familiarity with autism. Happily both are open about this, and willing to draw on and share personal experience.

We hear a lot about diversity in the workplace in a conversation that has been ongoing since the 1960’s, and happily gaining momentum and raising awareness. Yet the conversation is mostly centered on race and gender. The topic of neuro-diversity is barely touched on. It’s time for this to change, and work such as Dr Freudenberg’s is beginning to bring this to the fore. If Agile as a movement—with its focus on teams and diversity of thinking—is really going to transform how we work then its practitioners, its movers and thinkers, need to learn more about this neglected aspect of diversity, and embrace it.

To get started, I recommend you put an hour aside, and watch the video of Dr Freudenberg’s 2016 keynote at the CAST conference, Neuro-Diversity and Software Development.


Footnotes

[1] In 2015 Steve Silberman published his book on the same subject, Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently

[2] Essentially, Silberman suggested that those with Asperger’s are problem-solvers by nature, so are attracted to tech work, and thus more likely to meet others with the same condition. In short, they breed, and ASD being genetically linked, they pass on the gene. This theory was challenged in a later (2014) paper, Is Silicon Valley a Breeding Ground for Asperger’s Syndrome?, which suggests that Asperger’s is generally common to (more highly) educated people (not just tech people), as this demographic tend to marry and have children later. Still, anecdotally, there is a high percentage of ASD people in Silicon Valley, higher than I have personally encountered elsewhere.

[3] It’s important to add that seeing Aspergers/autism as a “difference” carries with it the danger of not looking for a cure—especially for the most debilitating and (for families) exhausting expressions of autism. It is still not known how autism manifests, but it is known that, for example, people can carry the GABRB3 gene associated with ASD and not be affected [ref]. It seems possible that there is an environmental trigger that causes manifestation. As well as this not being known for sure, suggesting specific triggers here is too controversial for this post, and will derail it. From another perspective, it is questionable to suggest that a cure is actually necessary. Many autists, Temple Grandin among them, feel strongly that autism should be embraced, not feared, and certainly not “cured”. It is neurodiversity itself that has taken humankind to the amazing heights of discovery and invention we have today.

[4] See Asperger’s not in DSM-5 mental health manual, NHS news, 2012

[5] See Left and Right Brain Caetextia, by Griffin and Tyrrell.

[6] Another way of understanding the term empathy is lack of theory of mind. From an autist’s perspective this means not understanding that others do not know what they know and may not feel how they feel or react how they might react.

[7] See The Human Givens Institute


thanks to Katherine and Sallyanne for the inspiration and guidance
display image from neurodiversity-university.com

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