Month: March 2019

This article is written by a woman of color, but it\’s written to address a much more general phenomenon.  She quite rightly terms it Representation Burnout, referring to the fact that it affects any member of a minority group.  Visible minorities, like African Americans, first generation immigrants, or women in some fields (most sciences, businessplaces, tech), and men in others (nursing, social work, cosmetology), are the obvious examples.  You can often identify these minorities at a glance or in a short amount of time in their proximity.  Skin color, accents, and ethnic or religious clothing serve as these obvious markers.

But she also mentions her friend, who is gay.  That can be a more invisible minority group.  A given gay man may choose to express his sexual orientation by conforming to particular stereotypes: dressing in more feminine clothes, wearing an earring, speaking in a particular fashion, or styling his hair a particular way.  Or he may care for none of that, dress in stereotypically masculine ways, and simply date men instead of women.  Thus his identity as a gay man would be all but invisible to casual observation.  In this way, being gay can be externally expressed, but need not be.  Every 100th man you pass in the grocery store, statistically, might well be gay.  In this way, being gay is a mainly invisible minority group. 

Another mainly invisible minority group?  Autistic people.  Especially, but not limited to, the so-called \”higher functioning\” group, those of us who have learned or been forced to suppress ourselves, successfully camouflaging our autism for the sake of the rejecting, intolerant public.  There are a remarkable number of articles online talking about autistic burnout.  I\’ve actually linked to one previously, when I was suffering burnout.  Seemed appropriate enough.  Autistic burnout is, to my view, a specific type of representation burnout. 

Most minorities are, to a point, expected to conform to the majority\’s ways of behaving.  Immigrants to the US are expected to speak English, for example.  Even if that is extremely difficult for them.  Black and brown people in the US are expected to behave just like they\’re white people, and any \”failure\” on their part is treated as representative of all black and brown people.  Women in male-dominated fields are expected to work within the system, rather than change it.  Likewise for men in female-dominated fields.  These are mainly implicit understandings, and no one will generally tell you what you\’re doing wrong if you don\’t conform.  You just won\’t be as successful in that field or area as you should reasonably be.

What sets autistic people\’s struggles apart somewhat, I think, is the outright and blatant communication to many of us that we\’re not people unless we conform to neurotypical standards.  Applied Behavioral Analysis, or ABA, often makes a point of not simply teaching \”appropriate behavior\” but also eliminating \”inappropriate behavior,\” such as stimming, phrasing things in unusual ways, and doing activities in unintended yet creative ways.  We are literally told we are wrong to be what we are, and often pushed and trained to be otherwise.  For up for 40 hours a week.  It\’s the same message given to any minority, just louder and in the guise of \”helping\” us. 

At its worst, this is reminiscent of the boarding schools we once forced the children of the First People to attend.  Native American children were taken from their parents and tribes, and made to attend federally sponsored boarding schools.  The idea being that by taking them from their tribes and culture, and instead teaching them Western ways, the Native peoples could be assimilated into the broader US culture.  The initial establishment of these schools was mainly benign and meant to facilitate education and empowerment of the First People, but it didn\’t take long for less moral people to realize they could use this schooling system to try to erase the First People.  They kidnapped the children, took their culture (including their names) from them, and disciplined them harshly to the point of abuse.  If you\’re familiar at all with US history, you\’ll note this attempted erasure of the First People is a depressingly common reoccurring theme. 

I found the pointers and insights in this article both relevant and helpful.  By and large, I don\’t really have that many people I\’d consider, \”allies that can say for me what I\’d say\” for my autism identity.  Sometimes my spouse can, but for all the education he\’s had being married to me, and for all the writing on autism I\’ve done, there just doesn\’t feel like a replacement for my speaking for myself.  Perhaps that\’s part of why I spend so much of my time alone.  You don\’t need to advocate for yourself if there\’s no one busily misunderstanding and prejudging you.  

This piece details something of what it\’s like to be autistic in the world, from the \”this is how incoming information is handled\” side of things.  I was interested to note that there is no discussion of how other people handle being around us, or their treatment of autistic people in general.   Also curiously absent, sensory sensitivities and overloads, beyond the context of filtering. 

All six of the points in this piece are or have been relevant to my life.  Of the six points, I found the last couple most comment-worthy.  I would say I tended to get caught up in loops (point 5) more as a child than I do as an adult, save for bad interpersonal interactions that are likely to reoccur. 

There were two incidents of poor communication and hurt feelings around Christmas of last year, and neither of them would leave my poor brain alone until they were somewhat settled.  It was highly unpleasant, but I didn\’t think it wise to try to shelve the incidents entirely due to needing to see those people in the next year or so. 

The more positive version of this, getting looped into a hobby, hasn\’t happened to me for quite a while.  I\’m kind of sad about that, but I guess it probably allows me to manage all aspects of my life better than I would otherwise?  I used to kind of zone out while thinking about things when I was younger, to the point that kids in school would notice I wasn\’t in the present and start making comments about it.  In my adult life, such occurrences are quite rare, and the social awkwardness usually breaks me out of such thought-trances before someone even opens their mouth to comment. 

Related to the opposite phenomenon, needing reminders (point 6)…  I have a To Do app on my phone/support tablet that helps me track things I need to remember to do.  This includes things like washing the bedding, handling tooth care, and following up on health care appointments… but it also includes reminders to contact certain people and try to set up a get-togethers… because I literally don\’t remember to do that if not reminded.  Whatever brain circuits do that for neurotypical people, I\’m missing them.  

This is a really excellent piece on authentic communication and the importance of non-speech communications.  I posted a couple weeks back regarding a nonspeaking (but definitely communicating!) autistic person name Deej.  This is an account from a different person who has valuable thoughts on what communication can look like.

Much is said in the autism world regarding the importance of early intervention, with the assumption that without that early intervention, the child will never learn to communicate \”properly.\”  And by properly, they invariably mean speaking.  More and more, it seems this is inaccurate.  This author didn\’t learn to use speech the way most people do until age 10.

Sometimes, autistic people simply develop more slowly.  That can be on any number of spectrums, speech being one.  Others include emotional intelligence, physical coordination, sensory integration, and time management skills.  In some cases, these things may never develop to \”normal\” capacities.  But in many cases, it\’s just a matter of time.

If you or your loved one struggles with speech as a communication method, consider looking into other methods, such as pictoral systems, sign language, text-to-speech programs, and others.  A place to start might be this page.

This is a subject I can\’t speak to a lot personally, because I\’ve been capable of accepted speech since I was quite young.  It is, however, highly relevant to the autism world in general.  Even those of us who, like me, tend to be highly communicative via speech, can sometimes become mute when put into sufficient stress.

However, like the author, I too think \”use your words\” is a cruel and thoughtless thing to say.  I strongly agree that simply being capable of speech-communication does not guarantee you a normal life.  It certainly hasn\’t for me, normal to above-average speech capabilities or no.

Also, as an ending note: I am highly fluent in speech.  That does not mean I think in words.  I actually don\’t.  Nor am I exactly like Temple Grandin, who thinks in pictures.  I think in some crazy hybrid of music/sounds, pictures, short video clips, flavors/smells, and memory concepts.  I don\’t know how to explain the last one.  It\’s more like muscle memory than anything else, I guess?  It\’s like the remembered flavor of a steak, except for the concept of how a shoulder is supposed to rotate.  Or what adjustments are necessary to walk safely on a sheet of ice.

Words and speech, then, are a second language to me, though one I\’ve practiced extensively.  If I hadn\’t done this, what would authentic communication look like for someone like me?  I truly don\’t know.  Hopefully, as we learn to welcome more nonspeaking people to the table, more methods can be introduced to the general public, and be made available so that everyone can communicate and understand each other.  

This is a descriptive account by an autistic person who suffers sound sensitivity, like I do.  I think most days she has it worse than I do, or perhaps I\’m merely more fortunate to have a quieter place to live than she does.  Still, every sound or audio experience she lists, I\’ve suffered from repeatedly. 

Have you ever stopped in the middle of a relatively quiet room and just tried to identify all the sounds you can hear?  Or just do that in a more crowded area and see how many you can identify or isolate.  It might surprise you how many things your brain tunes out, automatically, because that\’s what it\’s supposed to do. 

I am very fortunate.  I work in my basement, and my basement is quite quiet in the winter.  Without the ducks and geese outside, the only sources of noise are my computer\’s fans, the clacking of my keyboard as I type, the hum of the heating system, the hum of a USB charger, the hum/clicking of the timer for the lamp behind me, the creaking of the house itself, and occasionally the wind.  (Also any notification sounds from instant messaging systems like Gtalk, but I often have those routed through unworn headphones.) 

By comparison, an average coffee shop will have several conversations going, the clatter of dishes and machinery behind the counter, the beeping of timers set to aid the baristas in making the hot drinks, the music played over the speakers, the screech of chairs and tables being moved, the sound of the door being opened and closed, the clacking of at least one other keyboard, the notifications of other peoples\’ phones, the crinkle and rustle of food wrappers or cup lids being handled, the occasional slurping or sipping noise from someone drinking their hot beverage…  this list could go on. 

Do you think about this sort of thing, or even notice much of it?  I do.  It\’s not a good thing.  I am extremely distractible, and I hate it.  I took care of a pet parrot for some friends last week, and I had to move the parrot\’s cage to the second bedroom to keep from getting frustrated and angry.  This parrot is extremely quiet, barely vocal at all (Pionus parrots are like that), but even the sounds of her climbing around her cage were too much distraction for me to work.  Fortunately I was still able to keep the parrot company sufficiently so she didn\’t get sad and lonely. 

I sympathize thoroughly with the author regarding fire alarms, by the way.  As far as I\’m concerned all fire alarms were imported directly from hell.  They make me wish myself dead every second I\’m anywhere near them.  I am so very grateful to be out of school, because now the only fire alarm I have to worry about is the one in my home. 

For a while, my spouse and I had ambitions of sound-proofing the small bedroom so I could use it to decompress.  Fortunately, that hasn\’t proved necessary due to the comparative differences between the apartment complex and our house.  The latter is exponentially quieter, even though it does creak a remarkable amount.