Types of Stigma: Self-Stigma

Type 2: Self-Stigma

Self-stigma happens when an autistic person (or family member of an autistic person) internalizes public stigma.

Last week I gave some rather hideous examples of public stigma.  While some autistic people are resistant to a certain amount of the vile fearmongering lies spewed out by Autism Speaks and similar organizations, we still live in the same spaces as everyone else.  With sufficient repetition, we may begin to believe these venomous ideas.

A relateable example to start with: I have rather thoroughly internalized the idea that I will never be beautiful.  This was never told to me directly.   Instead, it was repeatedly shown to me.  The women on television, on the covers of magazines, and in real life who are usually considered beautiful or attractive are very thin.  Their hips are narrow, and they have little, if any, extra fat.  They are usually of average height.  Their complexions are (unrealistically) flawless.  They do not have bad hair days.

None of this is me.  It's literally not in my genetics to look like that.  It's not in most peoples' genetics to look like that.  The standards are intensely unfair and unrealistic, and poisonous to self-esteem.  In this particular case, fortunately, I don't give a crap about being beautiful, because I value other things much more highly.

A more direct example now: stimming.  Stimming, as I've pointed out recently, serves a purpose.  It helps the person regulate themselves or express emotions (positive and negative), which results in a happier, healthier person, and fewer meltdowns.  Pragmatically speaking, you would think everyone would be on board with this plan.  Fewer meltdowns and happier people is good, right?

But no, because it's "too weird," autistic people are taught (via ABA or simply others' reactions) that it's not okay to stim.  We're told this is bad behavior, and that we're bad for doing it.  We're told it makes others uncomfortable (because others' reactions and then their decisions after those reactions are somehow our problem).  Essentially, we're shamed for being ourselves.  Like the impossibly perfect celebrities on TV and the covers of magazines, this is repeated over and over.

There's also the ideas that autistic people are damaged, can't feel emotions, don't have empathy, or in some really special cases, that autism doesn't even exist.  There's an account here of a person's experience with a few of these ideas.  Thankfully for her and for all of us, she's resisting and calling out those toxic ideas.

But I can say from personal experience that some people do believe them.  I actually had a friend tell me that she'd believed for years that I had no empathy until I literally called it out as a stupid myth.  This was after I'd spent years literally living my empathy: sharing her trials, being there to listen when she was upset, even bringing small treats or activities for special occasions.

This friend is not stupid, by the way.  She's a very caring, intelligent, lively human, and I'm glad to be part of her life.  My anger and sadness about this revelation was balanced by the fact that she was brave enough to admit it to my face and face the consequences, and the fact that, even believing that garbage, she was still willing to befriend me when I'm not the easiest person to befriend.

My best guess is that she was told this thing, that autistic people don't have empathy, relatively young, by someone whose authority she trusted.  She therefore internalized it without question, and because massive errors in communication can look like a lack of empathy without context, it was reinforced at points.

If anyone didn't know?  Yes, I do have empathy, thank you.  Autistic people can be jarringly pragmatic, or not recognize a situation as one meriting a more sensitive response, but that's not a lack of empathy, it's a difference in how the person views a situation.  

Venomous ideas like this can destroy marriages and families.  They alienate us from our communities.  They also drive autistic people to suicide and increase suicidal thoughts.  Depression and anxiety are considered comorbid with autism, meaning that those mental illnesses are commonly found in higher rates in autistic people.  No surprise, given all these ideas we've partially or entirely internalized.

I'm 31 years old, having gotten my diagnosis over a decade ago, and I still half-believe I'm a broken sub-human, because I was never like everyone else.  Being myself was wrong: it got me bullied, rejected, and alienated.  I know, cognitively, that this internalized idea is wrong.  I fight it every day, while I balance "not weirding out the normies" with being myself.  Most days, I think sanity is winning.  But on bad days, it's harder to believe that I'm not the twisted, fundamentally broken, less-than-a-human people constantly imply or even outright say I am.

Generally we don't talk about self-stigma that much.  Usually the norm for polite conversation goes with you everywhere, so when someone asks you how you're doing, you do not say, "Well, I'm a little underrested due to family drama and I forgot to take my pills today, so everything's kind of an anxious haze, what about you?"  You lie, and you say, "Oh, fine."  You don't talk about how mental illness affects you and so many others, and you certainly don't address how you have personally been affected by the destructive lies about mental illness.  Possibly, you don't even think about it.

The Internet has allowed people the safety of anonymity, though.  People who do think about it and are suffering will sometimes put cries for help on places like Reddit, in the National Autistic Society's forums, and on personal blogs and social media.  These cries are often answered by autistic communities and outspoken autism activists.  Even with such ready support, it's hard to unlearn this kind of stigma.  You can't simply find a safe space where people truly believe neurodiversity is a positive thing.  Your own skull contains the poison.

Surrounding yourself with knowledgeable fellow-sufferers-and-fighters can help, though.  Here's a link to an excellent list of resources to help.

With time, support, and effort, Self-Stigma can be fought.  With care, it can be countered before it becomes a poisonous, self-destructive force inside a person.  

Reading the Research: Pitfalls of Reading Faces

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article checks in with emotion-reading technology.  Essentially, businesses want to skip asking their customers how they feel about their products and instead want to take pictures of their faces and get the data that way.  Why is this relevant to autism?  These businesses are having the same problem reading faces that autistic people do, because a facial expression does not necessarily correspond to how a person is feeling.  

It's humorous to me that they're having to find this information out by trying and failing, rather than simply asking themselves whether this would work... but I guess this is another situation where neurotypical people just do things automatically, without comprehending what they're doing, how it works, and why it works.  

The examples they give in this research for why this technology isn't working are contextual, and that's the big hurdle for autistic people too.  We're taught in elementary school that a happy face means the person is happy, a sad face means the person is sad, and an angry face means the person is angry.  Simplistic, but you'd think it would be accurate.  It's not.  You can't, in adult humans, look at a smiling face and presume accurately that they're happy.  

Are they: 

• on the job at a customer service counter or receptionist desk?  They're probably smiling politely rather than actually happy, because customer service jobs tend to drain your will to live but you're required to appear friendly.  
• looking at something on their phone?  They've probably just read something funny.  This may entertain them for a few seconds, but their overall mood may not be happy.  
• in a situation where sadness would be a more appropriate response, like just after finding out their pet or family member died?  They're probably putting on a brave face because they don't want to publicly acknowledge or handle the pain right now.

You may have noticed all the "probably"s and "may"s in these scenarios.  That's because I've studied people long enough to recognize that there is always Option C: the one you didn't think of.  People are complex, and there is no 100% perfect way to predict people.  No AI, no autistic adult with decades of practice, not even a naturally gifted and charismatic neurotypical human, can manage perfect accuracy.  

That's not going to stop marketing firms from trying to make such an AI, of course.  With enough refinement, they can probably match or even exceed what I've done with my brain.  Having such an AI serve marketing and businesses makes me uneasy, but perhaps such AIs could also be used to teach autistic people how to read situations and faces more accurately.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Types of Stigma: Public Stigma

During my search for new and interesting autism-relevant research, I ran across an article talking about the types of stigma experienced by parents of autistic people.  It included two types of stigma I'd never heard of before.

I have a psychology degree, a decent amount of experience with stigma, and a general interest in such things, so I did some research... and I found there's a whole bunch of types of stigma.  I also hit upon a nice infographic, which I'll repost here.  I'll go through each of the types with autism-relevant examples from my experiences and reading.

Type 1: Public Stigma.  

This happens when the public endorses negative stereotypes and prejudices, resulting in discrimination against people with autism.  

The charming "Ransom Note" public campaign by New York University is a good example of this.

Text: We have your son.  We are destroying his ability for social interaction and driving him into a life of complete isolation.  It's up to you now. ~Asperger Syndrome

This is stigmatizing in a few ways.  First, social interaction and your ability thereof is a skill... i.e., something that can be learned.  So, no, there is no destruction here, it's simply that the child may need extra support to learn those social skills.

Second, do you know why autistic people tend to be more isolated?  It's not because we don't want friends, or don't try.  It's because neurotypical people tend to reject people different than them.  When that happens over and over, the person loses the desire to try again.  Saying that's their autism's fault is not only absurd, it's literally the opposite of the problem.

Third, this ad commits the idiocy of assuming you can remove the autism from the autistic.  You can ease the ways an autistic person suffers, like providing sensory support, treating depression and anxiety, allowing them to make decisions (and mistakes!) on their own terms.  And the results may be that they act less "weird," which is then mistaken for "less autistic."  The fact remains that you cannot cure or remove autism, which is a neurologically-based difference, from an autistic human.

This campaign, and others like it, have informed the public opinion of autism.  We are, apparently, a disease, threatening, and something to be feared.  This was the message given to the general public.

Here's another horrifying ad by Autism Speaks (stupid name; no autistic people are listened to there).  And here's the transcript, in case, like me, you can't follow the whole thing.

They've personified autism into some kind of malevolent disease-demon, infecting innocent children and making them have greater challenges than most kids.  Autism Speaks is happy to blame disintegrating marriages on this nonexistent entity rather than the actual children, while demonizing what makes those children unique.

Autism, to Autism Speaks (bullshit name), is nothing less than evil.  Which they, of course, have set themselves up as the "Good" to fight against.  There's a lovely message of universality, with mentions of various countries and religions.

It's a pity it all misses the truth, which is that there is no demon.  If autism has a representative, it's your children.  It's adults like me.  It's the collective community we adults have built.  We don't want your marriage to fail any more than we want our own relationships to fail.  We don't want you to go bankrupt paying for therapy that traumatizes and stigmatizes us.  We certainly don't want you to lose hope.

Mostly, what we want is to be ourselves.  To not be rejected for being different.  No amount of demonizing autism will make that happen.

Some excellent general examples of the typical public stigma experience can be found in the article here.  Highlights include, "autistic people don't have empathy/can't feel emotions," "autistic people are damaged," and how autistic children are all apparently soul-draining, life-destroying monsters (due to how some parents talk about them).

All of these are examples of Public Stigma, the first of seven types of stigma.  

Reading the Research: Toward Eliminating The Medication Roulette

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article is a step forward from a previously posted article.  Previously, scientists and programmers had created an AI to predict what anti-depressants would help a given person, based on their brain scans.  The success rate was pretty good at the time.

This technology has now advanced, and several more studies have happened.  They're now giving the AI DNA tests and blood tests in addition to brain scans.  More interestingly, and significantly more hopefully, they're embarking on what's called a longitudinal study, to test the long-term effectiveness of the AI's recommendations.  

Longtudinal studies are ones that span years- often decades.  These studies do not interfere with the participants' lives, but simply follow them across the years.  The idea is to see the long-term effects of a condition like depression.  In particular, these studies will assess the participants' rates and severity of depression.  

The hope, of course, is that this AI is nearly infalliable and its recommendations can serve as a much quicker, more accurate, efficient psychiatrist.  Instead of trying up to dozens of medications over years of depression, you would be able to submit your data to the AI, which would spit out a treatment plan. Follow the treatment plan (this medication, that form of therapy, or that type of brain stimulation) and your depression improves until perhaps you don't even qualify for the diagnosis anymore.  

The reality probably won't be quite so perfect, but considering how much guessing goes into psychiatry in the first place, I feel any improvement would be good.  I'll continue to keep my eye on this technology, with fingers crossed for continued good results.  It's more important than ever to treat depression quickly and effectively, given the increasing rate in the general population.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Worth Your Read: Types of Stims

https://justkeepstimming.com/2017/08/28/stim-toys-and-fidgets-workshop-a-recap/

For a very shortened version in infographic format: https://justkeepstimming.com/2019/05/21/types-of-stimming-infographic/

This is a good primer to the types of stimming that exist, covering most of the senses.  There's a little bit at the beginning on why people stim, which I consider mandatory reading.

Honestly, I wish that section was longer.  Stimming is one of those things that's been demonized for being abnormal.  Eliminating it is a primary focus in many ABA programs.  This focus ignores the function of the behavior.

It's more than that, though...  Autistic stimming is usually just more obvious variants of behaviors that most people do.

Y'know how some people nervously bounce their legs, or twiddle their thumbs in boredom?  Maybe they fidget a little, crack their knuckles, or even play with their hair.  Some people hum when they're alone.

That's stimming.  All of that is stimming.  You've been seeing people stim your whole life and never batted an eye about it.  The only reason autistic stimming is deemed unacceptable is because it doesn't always look like that.

We also tend to stim more often, because we're under far more stress than most people.  There's internal stress, from our brain and body not obeying our commands or needing extra support to function well.  And there's external stress, from the unfair demands of the people around us ("Act more normal!") and those of society ("you only have worth as a human being if you're making money!").

It all adds up.  If the stim isn't dangerous to the person or the people around them, LEAVE IT ALONE.  Letting a person stim means fewer meltdowns and a happier autistic person.  

Reading the Research: (Cyber)bullying

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article tackles the effects of cyberbullying on children.  Autistic and other neurodiverse children are more likely to be bullied than your average child, due to our innate differences and the miscommunications that can go with those differences.    

The effects are about what you'd expect for something that includes "bullying" in the name: measurably higher levels of depression, anxiety, post-traumatic stress disorder, anger and dissociation from their lives and selves.  Cyberbullying is emotional trauma, and preventing that can't be done by keeping an eye out for bruises on a child's arms and legs.

Now, traditional bullying, the kind I experienced in elementary school, can come with a physical component.  I was kicked between the legs, for example.  But bullying usually comes with an emotional component as well: I was mocked verbally for my tendency to cry when upset as well.  Later, in middle school, people attempted to mock me for my lack of fashion.  Unfortunately for them, I was too angry to give a crap.  

Cyberbullying is a bit beyond the traditional bully-on-the-playground or mean-girls-in-your-class experience.  Why? The ever-present nature of the Internet.  At this point in time, most children have a smart phone, and perhaps spend some of their free time on social media or popular video games like Fortnite.  

You see, I was safe when I got home.  The cruelty of my classmates couldn't follow me back to where I slept.  Today, bullying can follow you anywhere.  If you have classmates on social media, then you can have cyberbullying.  If you're playing the same online game, you can also have cyberbullying.  Heck, it doesn't even have to be classmates.  You can be cyberbullied by random terrible people on the Internet that just took a disliking to you.  

Actually, cyberbullying has one additional difference from traditional bullying.  This article doesn't talk about it, because it's more interested in explaining that cyberbullying exists... but because the Internet allows for anonymity, it is possible for a child to cyberbully themself.  It's a form of self-harm, like more traditional cutting.  Here's a NPR article about the phenomenon.

Needless to say, I hope, it's a subject that should be taken very seriously.  Emotional pain may be harder to spot than bruises or scars, but it's just as painful as physical pain.  Sometimes moreso, because of how invisible it is.  You can silently suffer and no one notices or seems to care, for years.

You can find resources to help you and your child fight cyberbullying in a lot of places, but here and here are good places to start.  Bullied people can also get help immediate via text to the number on this website or call the numbers listed on this website.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Worth Your Read: Bone-Tired

http://www.thinkingautismguide.com/2019/12/i-identify-as-tired.html

This is me right now.  Maybe it's been me all along, through high school and college.  But it's particularly me right now with all the things going on in my life.  

I'm actually too tired to do a whole rant on why I'm tired, but the basics are this: revamping our budget, the household is down to one car, reworking Chris' and my communication so both our needs are met, hosting Chris' younger brother and trying to help with his job search/adulting, I keep getting sick (flu, food poisoning, ???), and my country's federal government is a fascist mess pretending to be a democracy.  

There's been an idea floating around the Internet in regards to limited energy, called Spoon Theory.  The original site seems to have disappeared, but there's a version of it here.  I've never had a good sense for how many spoons I have in a day.  I think I also have the ability to borrow spoons from the future, so to speak, such that I'll be utterly exhausted the next day but be able to survive the current one.  Unfortunately if you do that too much, you pay for it in spades, and that is what is happening to me.  

In general, I'm finding that I'm having trouble making eye contact, managing myself, making conversation, and even formulating the words to express my thoughts.  I'm doing essentially the bare minimum to keep my life and relationships sustained.  

I'm also spending massive amounts of time doing self-care, which feels like a horrible waste of time when I could be working or doing things that actually help other people.  Unfortunately, while that's how I feel, it's not wise or necessarily fair to myself, because I'm no good to anyone if I can't function.  I know, mentally, that you have to be good to yourself so you can be good to others, but emotionally it still feels like a waste of time.  

Reading the Research: Blood-Brain Barrier

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today's article talks about a thing I'm pretty sure isn't covered in most biology classes, yet is incredibly important when talking about autism, depression, anxiety, or even drugs: the blood-brain barrier. 

"What the heck is that?" you might ask.  It's kind of like a sieve.  The brain and the bloodstream are connected, with this sheet of picky cells dividing them.  The cells allow things like sugar and oxygen through, but they block germs and most drugs from messing with your brain.  Which is good, because your brain is very fragile! 

People with depression, autistic people, and others with more fragile systems can sometimes have weaker blood-brain barriers.  When that's the case, the person's brain may not function as well as it should.  It may be harder to think, or harder to think on a high level.  Planning your day might be harder.  It might feel like you're thinking through a fog. 

Systemic inflammation can also weaken the blood-brain barrier, and that can be caused by being ill, having allergies, being asthmatic, eating dairy, and other things.  So then more bad things get to your brain, and you do worse. 

The point of this particular study is to note that the blood-brain barrier might be what your typical pharmaceutical regimen is missing.  In some cases, depression might not be a neuron problem, it might simply be a "too much icky stuff getting into the brain" problem.  So strengthening the blood-brain barrier would improve the person's wellbeing and happiness. 

Granted, they've only done this study on mice, and mice are not humans.  But it's an interesting avenue of study.  I hope to see more on it in the very near future. 

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)