Neurodiversity

“One way to understand neurodiversity is to think in terms of human operating systems. Just because a PC is not running Windows, doesn’t mean that it’s broken. By autistic standards, the ‘normal’ human brain is easily distractable, obsessively social, and suffers from a deficit of attention to detail.” — Steve Silberman, author of Neurotribes.

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… and suffers from a deficit of attention to detail, just like Windows, I would add.

I came across this quote while watching a semi-related video about autism (linked at the bottom) by Sarah and Liam Harvey. There is much I could write about autism—and I will probably do, in time—but today I’ll focus on neurodiversity.

The quote from Steve Silberman hit me surprisingly hard today.

Truth is, long before I realized I was autistic, I had abandoned Windows and discovered the joy of alternative operating systems. I had customized my own computer, but what I was truly cherishing, as early at fourteen years old was the sheer diversity of operating systems in existence. I knew that was called “diversity” but I did not know, back then, what the word “diversity” means for others today.

What I did know, however, is that mentioning other operating systems than Windows was attracting bad sorts of attention: mockery, disapproval, fear, a general form of opprobrium which I quickly learned to avoid at all costs. Without access to a group of peers (that came six years later), I simply hid my technical endeavors. Played “make pretend” by staying knowledgeable on Windows developments, attempting to reskin the appearance of my software towards “normality” (with more or less, and often less, success).

For context, remember: these were the 90s, the time where Intel and Microsoft were king. Computers were still super expensive. And I was being raised in a conservative, often reactionary environment. Unorthodoxy in computing was seriously unpopular.

The discovery that one could choose an operating system had been already a foundational learning moment, which reshaped my intellectual endeavours and set me on a path I am still walking more than twenty years since. But what most fascinated me was the study of differences between the available options. Why these differences existed, since when, who was responsible for them, what kind of person was using one operating system more than another. And the next most astonishing, disappointing and emotionally devastating discovery for me was that no one else cared—to the contrary.

What I was doing was not “normal”; it was bad, and the fact that I found beauty in this diversity made me even worse. So I hid. I felt lonely, guilty, and it brought me bad habits that haunt me to this day: I still avoid sharing what I learn or my intellectual hobbies with my peers, my family and my friends. Out of learned fear they might disapprove.

And today, I hear Steve Silberman drawing this analogy between neurotypism and “normal” operating systems, and I understand—for the first time, ever, I understand the fears, the loneliness, the suffering of neuroatypicals, especially teenagers, and their parents.

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The irony of the situation is not lost on me.

I now wear my autism on my sleeve, and I openly and regularly highlight to peers and new acquaintances how it impedes my activities. So I often “feel” the assumptions by friends and acquaintances that autism has brought me pain and misery in my childhood; I sometimes “feel” when they censor themselves from asking me questions about it, to avoid re-opening imagined old wounds.

The truth is, I did not suffer of autism. It was there, and probably made certain things more difficult than otherwise (especially respective to social interactions and friendmaking), but it never was something I would resent about myself. There has never been self-hate about this. I had sufficiently many other concerns going, and, foremost, I lacked so much self-awareness (…yay autism…), that it never came up to me that autism was a thing I should be concerned about, or that others may be concerned with. Not the least because I simply didn’t know I was autistic.

Sure, I got bullied plenty, but the bullying was focused on other topics. The fact that my language use was not appropriate for my age group, for example. Or that I performed above expectations at school assignments. Or that I was doing irregular things with computers. My life today is more complicated because of what I experienced in those dimensions early on, but not much so because of autism.

The fight to make neurodiversity visible and accepted is not my fight. Insofar there is a “movement”, I am not part of it. I did not suffer, so I do not deserve it.

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The illustration used by Sarah Harvey in her video looks like this:

neurodiversity

I see this rainbow lettering as a cute form of cultural appropriation. I initially figured it makes the “fight” more real, but on second thought I think it is meant to attract allies: those who already support sexual and gender diversity could perhaps be made to extend their support to neurodiversity by appealing to the same symbols.

The parallels are striking, even.

There is a similar fear and loneliness of children, teenagers and parents.

There is a similar anxiety of adults who discover a new way to lead their existence after another existence of self-denial or self-ignorance.

There is a similar fight for recognition, for acceptance.

There is a similar ignorance of the masses, education to be given.

There is similar active disinformation by opposing forces, politics to be played.

There are, similarly, social rules to be learned, to be adapted. There are friends and family members to be accommodated.

There are, similarly, traditions that cannot be continued as-is and must be transformed.

The colors are fitting.

At Stonewall, the transsexuals fought for the rights and acceptance of homosexuals, bisexuals and other deviants. The Ts had to fight as their need for medical attention and public accommodation forced them in the open. In our time, narcoleptics, Tourette’s, deep autists, and bipolars fight for the rights and acceptance of HFAs, ADHDs and dyslexics. They fight for us because they cannot hide, so they might as well fight.

And I feel indebted to them, as much as I was grateful for what the Ts did for me before then.

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A startup that I currently work with is very much concerned with “diversity.” Report after report, presentation after presentation, I get to hear how “we should strive for more diversity” and how “little diverse” our group currently is.

This bothers me to no end. Ostensibly, the only thing that seems to matter is the Equal Opportunity laws and the percentage of female and non-white employees (and, after sufficiently many employees, the number of medically handicapped hires, as mandated by law).

I mean, I get it, the fact that there are only two women in a team of 20+ engineers is a Problem with a capital P, one that needs serious attention. Ditto for the number of non-white employees. The ratios inside the group should really mirror that of the population at large, and currently they don’t, so there’s work to do. And I am fine with that work.

But can we, please, not call this “lack of diversity”?

Every time I read or hear that “we have a diversity problem” or “our team is not diverse,” I feel that I am being pushed back in the closet.

Cultural diversity is an asset. International backgrounds make people more mindful accepting of different value systems. Conversations get lifted away from simple banter. With more than ten different cultural and a large combinatorial multiplication by several socio-economic backgrounds, this team has very little risk let discussions and decision-making become biased by poorly defined “common sense” or “shared values” and instead focuses on more tangible and objective arguments.

Sexual diversity is an asset. This group is even right on track there: as the group grew, the overall gender balance (including non-technical staff) is getting better, and I was happy to discover that the second openly gay staff member was a woman. It’s almost as if women and men have an equal probability to be gay, and that a small team can display the same ratios as the general population. What a surprise, right?!

Neurodiversity is an asset. One of the most fun, smart, entertaining and foremost beloved team members is an ADHD lighthouse. I am so proud and grateful to be able to see them as a publicly recognized (and rewarded) model that I can follow. There is a demographically appropriate distribution of dyslexia, autism, OCD, SPD and other divergences, and the surrounding social group is amazingly tolerant and embracing of this diversity. So why does it not get reported on, acknowledged, celebrated?

Why do I still get to hear that “we have a diversity problem”?

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June 18 is Autistic Pride Day. Be there, be proud. I probably will.

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The video by Sarah and Liam Harvey: