Blinded by our light

many bright lights in a gridI want to say something today about the concept of autistic people — especially women — masking their traits and camouflaging with the rest of the Nero typical world.

While it’s very much en vogue and the subject of research these days, that late-diagnosed autistic individuals have been deliberately hiding their traits and masking for the sake of fitting in, I think that there is another big component to that which people are missing. A great blog post was written a little while back about how we may be masking, but frankly we are not that good at camouflaging, essentially forcing the entire world to confuse our presentation with normalcy or some other form of behavioral disorder.

I think this is absolutely true, and much as the theory of mind idea has caught on with researchers and clinicians, and much of the research autism establishment, this idea of camouflage is a quick and easy way to explain away what I think is really a two-sided, contributory process, which clinicians and healthcare providers and educational providers, and pretty much everyone else in the world who claims they never noticed our difficulties, have found extremely useful, if not downright elegant for their purposes.

There is no doubt in my mind and in the minds of many, that autistic people, Especially women, or able to conceal their traits, learn to mimic Nero typical individuals, and otherwise hide and suppress their behaviors that would mark them as overtly autistic, and expose them to considerable bias, prejudice, bullying, and other forms of physical, sexual, and social violence. However, as has been said, our ability to mask and Hyde is not the only thing that is keeping us from being recognized and helped.

I think that there is a lot of ignorance and cluelessness about what autism in adults, especially women and non-stereo typical men looks like, And rather than address that ignorance, it’s easier for clinicians and providers and teachers to all just overlook it, because they are looking for problems that they can solve based on their knowledge and experience. And I think that our non-standard approach can so easily be explained in other terms, especially when they are not looking very closely at us, and they are not looking through the right lens, and there are also many established interventions that they are familiar with, and which are very actively marketed, promoted, advertised, and hard sold to the world, that they would rather stick with something they are familiar with, instead of taking a chance addressing something as both mysterious and as iconic as autism.

Autism, quite frankly, is just too big. And there is so much research surrounding our community members who are young males, that unless someone is current with the latest research, and unless they are Open to re-examining their beliefs and assumptions and knowledge about autism, the chances of them going out on a whim and addressing something as scary as autism are slim to none.

Even more so, I think one of the things that blind people to my situation, was really the high points, and my extremes Strank’s, which were so brilliant and so blinding, that people could not see the difficulties I was having. I think that it’s just human nature to generalize one observation across a larger situation – for example generalizing what people know or believe they know about young white boys on the autism spectrum and extending that out to the entire autism population, as well as observing extreme strengths and high levels of functioning and capabilities in a person, and then generalizing that out to their entire personality. I believe that people are metaphorically blinded by the light of our abilities, and they think that well of course we should be just as capable and just as talented in every other sort of scenario, so therefore any lapses on our part, any feelings or weaknesses, must just be because we are not trying.

Part of the issue as I see it is that we have a lot of very high performance individuals being assessed and graded and assisted by people who are not high-performance individuals. For every class in medical school the graduates a top 10% it also graduates a middle 80% and a bottom 10%. What then becomes of the bottom 10%, or even the middle 80%, who by their very nature’s may not be inclined to be a high-performing individuals? They ended up teaching us, assessing us, assisting us, and may actually even make the rules about how to recognize us. And that’s a problem. Especially when you have people who want a quick win or a quick answer, or a one size fits all approach to what people are now realizing is an extremely varied population that spans a spectrum of abilities and difficulties not only in terms of frequency and duration, but also in terms of intensity. The autism spectrum is very much a three dimensional if not for dimensional spectrum, and anyone who applies cookie-cutter assessments and so called solutions to anyone on the spectrum is playing with fire – not for themselves but for the individuals they are trying to help.

This tendency for humans to generalize one thing that they’ve seen across every other variation of that is, to my mind, one of the biggest hurdles we have to cross. Actually it’s less of a hurdle then it is a sinkhole. It’s a conceptual pit that drops out from under you without a moments notice, and it can be large, or it can be small. It can be a minor inconvenience for drivers who need to drive around it, or it can be a major problem opening up the earth under a busy Toronto Street and swallowing minivans in the process. Note: add a screenshot of the Toronto sinkhole

So, where does that leave us? I think, as with so many things, it has to do with being able to calmly and patiently examine the data before us and draw conclusions with a hefty dose of humility. We do you not have the whole story on autism – not by any stretch. And much of the information we get comes from narrow, even on trustworthy sources. We have to have our thinking caps on at all times, and we have to start listening more than we talk. Of course everybody wants to take action, everybody wants to jump into some sort of proactive activity that helps battle the demon autism, but in the process of doing so, too much valuable information and insight is being lost. It’s simply has gone missing in Plainview. The good news is, and they’re always is good news I’m convinced, the information that we need is still there. It hasn’t disappeared just because people are ignoring it. In fact, the information is encoded, embedded, intertwined intimately in the lives of countless adults you can share and great explicit detail what their lives were like as children, thanks to their prodigious long-term memory, and their first hand sometimes extreme experiences on the autism spectrum. We are all out here. We are all able to speak up. And we are not like the stereo typical children, who is nonverbal modes of behavior or interpreted as lack of intelligence or lack of thought process. The adults in the Nero typical community, who are as artistic as ever, even though they don’t seem like it, are often able to provide some profound insights into what being autistic is like, and what it’s all about. Now, some of them don’t want to talk about it. Some of them don’t want to relive painful memories. And who can blame them? At the same time though, there are many who are willing and able – even eager– To share information about their lives when they were younger. There are hundreds and hundreds of blogs of people – many of them women – who are only two happy to provide insights into what life is like on the spectrum when people don’t realize that’s where you are.

So there’s really no excuse for the propagation of what constitutes propaganda about autism, designed to compel hurting and frightened parents to donate money and sign on with programs specially designed to give them a sense of hope and agency. There’s no excuse forhaving that be the only source of information about autism. Especially especially considering that even experts are now admitting that their views are incomplete and didn’t need a revision.

We need to stop being blinded by the light. We need to stop assuming that because a subset of our population is blazingly impact in ways that hurt the eyes of people looking at them, that each and everyone of us who is on the spectrum must necessarily be that way – or we are not on the spectrum. We need to stop assuming that excellence and superlatives ability in one area or possibly more, will translate in to superlative abilities all across the board. We need to stop generalizing about the difficulties the gifted people possess and treating them like they are always in pain and always suffering and always struggling because of some difficulties they have under certain circumstances – or possibly all the time – which are not the only defining characteristics of their lives. We need to start recognizing the true nature of the spectrum, and we need to get realistic about how to help the people who don’t seem to need help at all.

Of course, we live in a complex world. We live in a complicated global configuration of interlocking and interdependent cultures, worlds, and realities. That goes for individuals and sub groups of people as much as it goes for countries. So of course when people are presented with a seemingly endless array of conflicting information that confuses and frustrates them, they will look for a simple way to get their heads around it and integrate that information into their lives. It’s just human nature. But it is also costing us. It’s costing us understanding, it’s costing us loss of competence, it’s costing us lost time in terms of help in people who are very much in need of help, despite looking brilliant and shining in the moments when others are watching.

It’s my hope that at least some people will take up this challenge and learn to see past The bright shining blips of lights on the radar, and learn to Sean would like they have into the dark the corners of our hidden lives – before the sun sets on us all.

One thought on “Blinded by our light

  1. Indeed. As others have written in response to all the recent flurry of interest in “masking”, I’ve spent a lot of time and effort, both consciously and unconsciously (or semi-consciously) learning to mask and blend in. But I’ve never been so good at it I couldn’t be noticed. I was never a chameleon, even when I wanted to be one. And I certainly didn’t mask much at all as a young child. Anyone who has been around me for any length of time has known there’s something “different” about me. Autism never came up, but some of the coworkers I’ve known for decades have often noted differences in the way I interact with the world and approach problems.

    It’s also impossible to separate my autistic traits from my talents and gifts. The way my brain works makes me capable of seeing and doing things others can’t. I think most people have looked at me and chosen to see only the gifts, not the struggles.

    Your point about medical school did remind me of an old joke, though. (I don’t recall the source.)

    What do you call the person who graduated last in their class at medical school?



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