Ableism Gaslighting?

[An0maly_1976]

Ooooookaaaaay...

As anyone here knows, living with these conditions is hard enough when you have a support group -- family and / or friends who understand you and have the patience to process your idiosyncracies. Unfortunately, I am generally surrounded by ignorant and intolerant individuals who utter the typical trite ableist phrases such as "we're all a little like that" or "you can do it, I know you can", for starters. That might be construed as positive reinforcement through encouragement, but not in the manner it is being presented to me. I've just found that I'm better left to do things at my own pace, my own way.

I have recently found posts by known Aspies that allude to ongoing issues with basic self-care and home environment (putting things in their place, hygiene), etc., that fit me perfectly. And for awhile now, I have been in a tug-of-war, shouting match, etc., about exactly that. It's not that I don't care, or that I want to be slovenly, or live in a pigsty, I just don't see when certain things are out of place. I also don't notice anything needs to be cleaned unless it's obvious. To complicate things, I have serious asthma and allergies that make cleaning a challenge, as most cleaning products stir my asthma up to potentially being fatal. Not to mention anything that requires a good amount of scrubbing is pretty hard on me also – I have problems just taking a bag of garbage out to the curb can for pickup.

My folks (living with one of them) in particular have more or less adopted the position that I should have no problems with basic self-care and household chores, etc., even with Asperger's. My father in particular shoots down everything I say and finds fault with everything I do or don't do, and it's all the more frustrating now that I know I am doing the best I can. I don't think he really believes I have any real problem, and I doubt he will believe either diagnosis (COPD or ASD/Asperger's) if/when it is made official.

I honestly don't notice when most things need to be cleaned, and if someone says something about it, no sooner do I say, “Yeah, I'll get to it in a minute”, it goes right back out of mind, which of course, infuriates them, as they take it as being ignored. The irony here is that my inability to readily recognize minor to moderate cleaning is needed, somehow takes precedence over the house beginning to have serious structural issues due to foundation problems and pet damage.

Just tonight, my mother dared to insinuate that I want consideration without giving it, claiming that she said she thought I had autism (I don't remember this EVER), saying that she is sorry she failed me, while saying I should imagine what it is like 'trying to raise such a child'. Hypocrite much? Imagine having everyone expect normalcy from someone with ASD, especially sudden normalcy after living with it for 40 years, with little if any change... For what it's worth, I suspect ASD on her side of the family, she, her brother and her father all showed signs of it when I think about it. Even my father seems to have some characteristics.

First off, I don't think she failed me then, given that I was undiagnosed as a child, and still technically am. If anyone failed me, it was the dimwit doctors I was taken to. But I do feel she is failing me in the present by pushing ablelist BS on me instead of understanding that certain things just don't register or stick with me is not helping in the least. Am I wrong for feeling this way?

One of my other family members, while supportive and sympathetic of my situation, seems to act like I just want to act helpless and unable to do anything, which is not true. I want to work. I want my life back. But I can't have it. I can't do everything I want to do – not really. If I can do it, I don't do it particularly well, and if I can, I take way longer than most people. Hence, some just continually find fault with everything I do or don't do. And they wonder why it seems I don't want to try? Which isn't true, I just can't keep my mind on most things for very long.

Examples... At one time I wrote and recorded original songs. The one I feel is my best song has an outro solo for around two minutes or so. Looking back and thinking about other music I've heard (I love a great many genres), any musician worth their salt would lay the same solo down in five takes or less, maybe even the first. It took me forty-three. And it was mainly due to motor skill issues, as in my fingers were randomly doing something other than what I wanted to do. I could hear the notes I wanted to play, I could see where my fingers needed to go to produce them. But invariably, they would randomly fall somewhere else.

And it wasn't an isolated incident on a particularly difficult undertaking -- I spent over 70 hours on the track alone for another song. I have trouble even typing on the computer, prompting mild-to-moderately angry Tourette's-like outbursts after making the same mistake seven times straight. Minus the outbursts, I had the same issue in high school typing classes. I also have trouble with fumbling my keys, opening / closing doors, dropping my cell phone way more than most, etc.

And speaking of typing, another example – for a time I ran my own taxi service. Events that actually happened to me and other cabbies (we often sat around talking shop and trading war stories) inspired me to write a murder mystery novel. If memory serves, it would have been a three-hundred-thirty-page paperback, a rather lengthy project, but I think a neurotypical writer could have written it in around a year or two. It took me somewhere between six and eight years – I forget exactly when I started it.

Maybe ableism isn't really the right word here, but it seems like it, as I've said elsewhere that expecting too much from someone with ASD is just as bad, if not worse than presuming them helpless. Has anyone else found themselves being counterproductively gaslit like this from people they need as a support group?

 

[Suzette]

I commiserate on typing and doing things slowly. In school I failed an elective typing class because I could not exceed 20 words per minute. Some of that was not really fair. We were using bug IBM Selectric typwriters and I have very small hands so I could not reach the keys efferotlessly. I was always getting scolded for moving my elbows away from my body. But I couldn't reach the keys otherwise!
Computers are easier because I can get small keyboards but I still fumble a lot!

Oh, and it took my 20 years to learn to knit because I didn't realize I was attempting to do right handed directions with my left hand! Ha Ha!

Anyway, non asd folks probably won't understand at first. Even our parents. They are just flawed humans. Maybe especially our parents because parents tend to think they have "failed" if we don't meet their expectations, no matter how unrealistic. Forgive them if you can, they are doing their best even if that best doesn't meet your needs.

There are a lot of things you can do to compensate for your executive functioning defficits. Alarms, calendars, visual stimulators as reminders (like a big colorful poster to remind you to bathe). Most importantly are routines. Create rountines and be pendantic about sticking to them.

You are not hopless, just unskilled. You can learn all of this. It is up to you.

 

[Bolletje]

I used to get into arguments with flatmates because I, too, would not notice the same things they did. So I was accused of not doing my share of the chores, while I thought I did them just fine. Back then I didn’t know I was on the spectrum and just figured my flatmates were uptight.

Living with a ND boyfriend I realized that he has a much more pronounced version of this than I do. He does not realize things that need doing. If I ask him to do a certain thing (like taking out the trash) he will do it, but if I don’t ask him to do it, he won’t. If I don’t ask and don’t do things myself, things just don’t happen.

Suddenly I’m the “clean and organized one”, but really it’s just by default because he’s even worse at this thing than I am.

 

[Neonatal RRT]

Unfortunately, the people who should be our greatest supporters, our loved ones,...are quite the opposite. I think you will find that family dysfunction is all too common. It's one thing if you can simply pick up your belongings and leave,...and be totally fine. It's quite another if you do have obstacles in your way of getting out from under the heavy hand of a dysfunctional family situation.

I was able to get out the door at 18 and frankly, it was simply an expectation from myself and of my parents I was never coming back. I didn't know I had autism,...frankly, no one would have diagnosed me with it back in the 1985 when I left home.

Years later, after learning about autistic children at work, the media, and in the literature,...I knew I had the traits, but I was so high functioning that I never put the puzzle pieces together. I never even heard about Aspergers condition until the 2000's. Some 15-20 years after that, I finally sought out a psychologist who specialized in adult autism and was diagnosed. My parents do not know. One sister, who has a PhD in pharmacy,...someone who I thought might have the intellect to understand and have some compassion,...responded just like your family. "Well, everyone has those issues." "It's just a label." It was all the classic minimizing comments that drive us all to anger and frustration. I was like, "Is she trying to make me feel better, as if I was somehow depressed enough to seek out a psychologist?" "Does she think I was overreacting?" It was like she didn't understand that I went through 4 hours of testing and interviewing,...they interviewed my wife,...I sat in a lab with 2 test proctors doing all sorts of tests, timing me, watching my body language, etc. So, sorry, sis, this was no simple "opinion" from some random psych "quack". Totally pissed me off. So,...I said nothing more about it to anyone else in my family except my wife and two sons. Even then, my wife, a highly educated cardiothoracic RN who runs a rare disease clinic,...my rock,...the love of my life,..."Well, you're not THAT autistic." So, I had to try to tactfully explain that the differences between that small child rocking in the corner with his eyes closed and his hands over his ears, etc,...and me,...is age, experience, a coping mechanism, and intellect. All that sensory crap,...still there. The social and communication experience,...still there. I have the intellect and self control to push it down deep,...and sometimes my brain gets tired, and it all pops up explosively much to my embarrassment. As I said in another post, most neurotypicals have a similar confusing lack of perspective taking about us, as we do of them.

 

[Thinx]

It's tough living with parents as an adult. Part of that is, that it's a situation that makes it quite hard to take responsibility for ourself. They think of you as a child in a way, like, forever, I mean, and then it's quite hard not to act into that.

Do you have an alternative? Because it is definitely hard to fully separate from childhood while you remain at home. However, even while you do remain, the best remedy for this is going to be to take as much responsibility for yourself and your future as you can. That partly means to take a step back from what others say to you, and research your condition, and especially to think about strategies that may help. You have noticed a lot about how you are, and that's a good start.

The reality about basic self care and care of your home environment is, that if you live alone you can do that how you like, but with regard to basic safety and being presentable at work or college etc. However, living with others calls for more compromise and regardless of who those others are, if we share their space we do have to take their needs into account. In order to do that, it sounds like you need strategies. And, finding strategies will be helpful in independent accommodation too. You are fairly unlikely to get any kind of help with these basics as an adult with ASD1 though it could be you would get help if ASD 2.

Try strategies like using a diary or other reminders, like phone alarms or memos, post it notes etc. I found all of those useful. Yes, everything does indeed take longer. Similarly to having dyslexia, we do have to put more effort in. But I feel like you have to get your head around, well, it's not fair, but it's how it is.

People will help, but you can't unfortunately tell them what attitude and stance and feelings to have while they do. Independence does free you a lot, though, so maybe have that goal in mind? If you develop strategies that work for you, you can care less what anyone says or thinks or how they choose to be, and you can do stuff your own ways.

There isn't really an alternative, where people all understand us and are kind about everything and let things go. I am definitely poor at cleaning etc, didn't stop me having my own homes, and coping adequately, and being independent of others and their opinions. Especially parents. Work towards that, maybe?

 

[An0maly_1976]

As of this moment (new info erasing all doubt I am an Aspie), I have Asperger's, severe asthma, anxiety, and depression. I don't necessarily want disability, but I think I'm at a point where I need it.

No real alternative at the moment. Money being the main roadblock.

 

[Thinx]

As of this moment (new info erasing all doubt I am an Aspie), I have Asperger's, severe asthma, anxiety, and depression. I don't necessarily want disability, but I think I'm at a point where I need it.

No real alternative at the moment. Money being the main roadblock.

Yes it sounds like the mix, or intersection, of your different conditions adds up to more of a challenge, for sure. I do see how frustrating the parents and others must feel to be. But still, all though we can advocate for change, we cant actually change anyone else, much, in the short term, but we can nevertheless change our own approaches, decisions and situation.

Looking for workable strategies is still a way forward. Also, if your challenges add up to disability, you should be able to get that acknowledged by relevant agencies and get help and support, maybe independent accommodation. You are 45 and your parents opinions are not going to stop you doing that. Are you in contact with any helping agency or advocacy advice? Do you have support for your depression? People on here often can help with relevant links, as provisions vary depending where you are. Hang in there!

 

[An0maly_1976]

Limited support for depression (i.e., no one wants to hear it, they want me to take pills that I can't afford and really don't help). A local group that specializes in adult ASD and Asperger's has me scheduled for testing late March. Until then, all I can do is sit on my hands and wait, hoping an earlier opening presents itself...

 

[Matthias]

I think most people see autism as a psychological condition that people can overcome if they make a greater effort since many symptoms of autism also occur in people with mental health disorders such as depression and anxiety that people have recovered from by changing negative and distorted beliefs with more positive and healthy beliefs. It doesn't help that many people with autism have very noticeable emotional problems that they choose to ignore or think are a part of who they are which really annoys many people.

 

[Matthias]

Limited support for depression (i.e., no one wants to hear it, they want me to take pills that I can't afford and really don't help).

There are countless websites and books as well as low cost online therapy for depression. You don't need pills to treat depression. Most studies show they aren't effective or only barely more effective than taking a placebo (a pill that doesn't contain any active drugs). If money is an issue, you can read books for free at the library, try a free 30 day trial of kindle unlimited at amazon.com, buy used books on eBay, or stick to free websites. You can also talk to your neighbors to feel less alone and ask them for advice.

Until then, all I can do is sit on my hands and wait, hoping an earlier opening presents itself...

Being passive and having an attitude of not being able to do anything will keep you depressed. You don't need to wait for other people to help you. You can take control of your life and work to overcome your depression right now. You don't need to do everything right away. Just do something each day to work toward overcoming your depression.

 

[An0maly_1976]

I think most people see autism as a psychological condition that people can overcome if they make a greater effort since many symptoms of autism also occur in people with mental health disorders such as depression and anxiety that people have recovered from by changing negative and distorted beliefs with more positive and healthy beliefs. It doesn't help that many people with autism have very noticeable emotional problems that they choose to ignore or think are a part of who they are which really annoys many people.

Because God forbid anyone not fall in line and be normal when they really aren't, right? Sorry, that sounds EXACTLY like NT people saying, “We're all a little autistic”, “you're smarter than that, I know you are”, “if I can do it, I know you can do it,” or “don't label yourself”. No ASD / Aspie individual labels themselves, or even wants to admit they're different. We don't have to, ableism in the world at large does it for us.

Already seeing ableism here after exactly two days, confronted with a policy more or less contradicting somewhat uncontrollable characteristics inherent to ASD / Asperger's. The point of a support site certainly isn't to shame those with a condition they may have little, if any control over. This got very long, so bear with me. For those who didn't get the memo, Asperger's and autism cause erratic ranges of "socially unacceptable" behaviors and general unawareness of what IS 'socially acceptable'. Meaning...

ASD / Aspie individuals are inherently unaware their words / actions bother others in the moment, if ever at all. ASD research suggests inherent memory latency issues, meaning no corrective guidance can change that. You simply can't expect ASD / Aspie individuals to be like everyone else – THEY AREN'T. And you can't assume they're all the same, either. Either puts the whole purpose of a 'support site' out the window.

No two ASD / Aspie individuals necessarily have matched issues, nor will any two necessarily show specific improvement. It's called a SPECTRUM for a REASON. Spectrum inherently means variables and differences, and one affected individual's success with work toward improvement translates in no way to anyone else. Example:

Two brand-new, identical Shelby GT-500s. Slight performance variations are actually quite common, but hypothetically, both should drive the same, get the same fuel economy, with the same performance. But assume variances are uncommon. What if the first showed performance and economy deficits in the same conditions, with no obvious problem? Most would say, okay, let's find the problem, right?

In the real world, defective sensors fluctuating are often to blame, giving no warning. Even the driver may not feel the difference. But if everything isn't just so, performance and function suffers. Even if the engine COULD know something is off, THERE IS NO CONTROL OVER THE ROOT CAUSE. And IMPERFECT, it does the best it can with the air, fuel and spark given.

Let's say the problem is more serious – a defective or incorrect engine/transmission control unit (“brain box”, as some call it). Far beyond a simple sensor issue, it randomly bucks and surges, stalls, poor control. Maybe the transmission randomly slips, won't go into gear. Not IMPERFECT -- CRIPPLED, and THERE IS STILL NO CONTROL OVER THE ROOT CAUSE OF A MUCH BIGGER PROBLEM.

But hey, once the problem is found, hey, no biggie, replace the defective part, right? All is well in the world. Trigger is rip-snorting the quarter-mile in 11 seconds flat and otherwise driving like a Lincoln, getting 22 mpg highway.

Where is all this going? ASD / Asperger's pose a HUGE correlative problem in that you can't simply replace a human brain. Even if surgery were hypothetically possible to 'cure' ASD, I wouldn't recommend it, as it could only make things worse. Look up a story called “Flowers For Algernon.” Newer research indicates a veritable brain defect – abnormal blood vessels causing insufficient blood delivery. Even high-school biology teaches (or should) that the brain is a sensitive and sophisticated organ, and insufficient blood flow causes brain damage, making parts of the brain develop slower than others.

Result? Nine-year-old child with advanced reading and communication skills, maybe even a perceived computer whiz, with no retention of spoken / most visual instruction, or focus in school. Even their humor is odd, perfectly understanding adult jokes, completely missing those more age-appropriate, never understanding when peers and even teachers ostracize them. Already, they know they are different, but can't explain why, nor can any evaluating 'expert'.

Frustrated teachers deem the child special needs. Parents balk at the idea – God forbid anyone say their kid isn't normal, even with many obvious developmental issues, despite shaming and repeated instruction. Maybe testing shows the child far ahead of their grade placement, with a 39-year-old adult's general knowledge level and intelligence quotient in the one-twenties.

Bounced to and fro between gifted programs and special education, erratic grades continue, never maintaining the same grade in the same class for any two grading periods. All the while the child is asked, “Why? I know you're smarter than this, you could get straight A's if you wanted to,” even abused verbally, physically, and mentally when “experts” determine the child is simply 'defiant'. Frequent lack of focus in school and random erratic, incomprehensible behavior lead to constant bullying, even physical harm.

As a teenager, they consider suicide, skipping school to escape insults and laughing that now even come from faculty. Eventually extracurricular after-school activity is required to supplement failing performance, barely graduating with a far below average GPA. The lopsided, inconsistent performance repeats in college, eventually suspended with failing grades.

As an “adult”, this person consistently has trouble holding jobs or maintaining good working relationships or work habits, bouncing from job to job. Perhaps they find a job they do well, but isn't considered a 'real job'. They always feel out-of-place and anxious outside of work, often feeling they are in a movie they didn't get the script for, even in rare moments of comfort in their own skin. Frustrated with others' lack of understanding, even themselves and their general 'failure' at life, they can't explain why, never finding a valid explanation for any of it until well into their 40s.

That person is me. Much like that crippled GT-500, despite various 'shops' and 'dealerships' to 'fix' the problem, my 'surges' of failed attempts at humor, platonic / romantic relationships, 'bogging' of not understanding / retaining auditory instruction, 'control loss' in speaking out of turn, even the slipping transmission of never getting anything done particularly well, if it all, have continued throughout my life. All before veritably wrapping myself around a utility pole, because of behaviors inherent to ASD, that I don't even notice are considered 'out-of-line'.

But ableism says the ASD / Aspie individual is to blame, not caring or wanting to change? Newsflash, no magic pill exists. No one can turn a switch on or off. Research shows parts of the brain likely stopped developing at a young age. The precision of mass production does not translate to five million people having ten million children. We aren't machines that can be repaired.

All my life, people with no possible clue what they were talking about have said, “You're perfectly normal, there's nothing wrong with you”. Even after finding the most likely explanation for my idiosyncrasies, I still struggle with family frequently dogging my lack of consistent effort in self-care and basic cleaning, saying I just don't care, or my frequent unwitting repetition of things I've told them before is irritating, among other things. Obviously blood is not thicker than water.

All of which makes me shut down because I simply can't seem to do anything right, if I can even keep it in my mind long enough to do it (rare). I'm constantly told “you just have to keep your mind on what you're doing.” Guess what? I CAN'T. IT'S JUST NOT THAT SIMPLE.

I get it – no one likes repeating themselves on basic life skills, but most don't understand or believe (or don't want to) that ASD generally includes serious retention issues, and often, not much can change that. Ableism at its finest. Maybe I said earlier that a family member said I want consideration without giving it? (Not true)

A support site entrenched with ableism-minded individuals, including policies opposing certain behaviors not necessarily controllable or even noticed by ASD / Aspie individuals, has potential to do more harm than good. It smacks of expecting near-perfect normality from individuals quite possibly unable to live up to that standard. As a support site, it's counterproductive. Heaven forbid an ASD / Aspie individual feel they can be comfortable being themselves on a support site, right?

It's bad enough that even today, many ASD / Aspie individuals feel on display as a freak show for an intolerant world at large refusing to understand. But that refusal to understand and intolerance really has no place on a support site. Nor do conflicting policies hindering individuals trying to find help, even driving them away. It's not as user-friendly, or even friendly, to its intended audience as the powers that be might think.

It's like the early-20th practice of dismissing us as 'imbeciles' and 'morons'. While suggestive input should always be welcomed, no one here should assume what works for them will work for anyone else, or that any ASD individual can be normal, especially when research indicates ASD can get worse over time. Such presumptions only mean that one has mastered masking.

 

[Matthias]

Because God forbid anyone not fall in line and be normal when they really aren't, right? Sorry, that sounds EXACTLY like NT people saying, “We're all a little autistic”, “you're smarter than that, I know you are”, “if I can do it, I know you can do it,” or “don't label yourself”. No ASD / Aspie individual labels themselves, or even wants to admit they're different. We don't have to, ableism in the world at large does it for us.

I know how you feel because I used to feel the same way. Those comments really bothered me but I've since learned that some of the comments I received were correct. It's liberating and helps me feel better knowing I was able to overcome problems I incorrectly thought were genetic. I'm NOT saying you can cure yourself of autism or that being "normal" is desirable. I'm just saying that not every problem autistic people have is genetic. Some things like anxiety, social awkwardness, and inflexible thinking can be overcome or at least lessened in severity which can improve your quality of life.

Already seeing ableism here after exactly two days, confronted with a policy more or less contradicting somewhat uncontrollable characteristics inherent to ASD / Asperger's. The point of a support site certainly isn't to shame those with a condition they may have little, if any control over. This got very long, so bear with me. For those who didn't get the memo, Asperger's and autism cause erratic ranges of "socially unacceptable" behaviors and general unawareness of what IS 'socially acceptable'. Meaning...

ASD / Aspie individuals are inherently unaware their words / actions bother others in the moment, if ever at all. ASD research suggests inherent memory latency issues, meaning no corrective guidance can change that. You simply can't expect ASD / Aspie individuals to be like everyone else – THEY AREN'T. And you can't assume they're all the same, either. Either puts the whole purpose of a 'support site' out the window.

I don't think anyone is trying to shame anyone with autism on this site or blame them for their social difficulties. People who are depressed often interpret people's words and actions more negatively which commonly results in negative misinterpretations. I think it's important to point out it's possible to learn what is socially acceptable by reading books, observing people, or asking people for help which will make it easier to find people who like you which will help you feel better.

No two ASD / Aspie individuals necessarily have matched issues, nor will any two necessarily show specific improvement. It's called a SPECTRUM for a REASON. Spectrum inherently means variables and differences, and one affected individual's success with work toward improvement translates in no way to anyone else...

Where is all this going? ASD / Asperger's pose a HUGE correlative problem in that you can't simply replace a human brain. Even if surgery were hypothetically possible to 'cure' ASD, I wouldn't recommend it, as it could only make things worse...

You seem to have a psychological need to see ASD and problems common in people with ASD as entirely genetic because you think having a disease or treatable mental health problems would make you inferior. I used to feel the same way but I've since realized that no one is perfect, that most people have physical or mental illnesses, and that regardless of whatever causes ASD won't make me any less worthy as anyone else. People with severe mental illnesses such as schizophrenia and people who suffer from brain damage can still feel good about themselves, find friends, feel like they belong, and enjoy their life despite believing they suffer from brain damage or have a mental illness. It no longer makes any difference to me, in terms of how I feel, whether people view ASD as genetic, a disease caused by environmental toxins, a mental health disorder, or the result of brain damage. I'm confident in who I am, recognize that I'm not perfect, and do the best I can. I'm just as good as everyone else and that won't change regardless of what causes ASD and problems commonly associated with it such as depression and anxiety.

A support site entrenched with ableism-minded individuals, including policies opposing certain behaviors not necessarily controllable or even noticed by ASD / Aspie individuals, has potential to do more harm than good. It smacks of expecting near-perfect normality from individuals quite possibly unable to live up to that standard. As a support site, it's counterproductive. Heaven forbid an ASD / Aspie individual feel they can be comfortable being themselves on a support site, right?

It's bad enough that even today, many ASD / Aspie individuals feel on display as a freak show for an intolerant world at large refusing to understand. But that refusal to understand and intolerance really has no place on a support site. Nor do conflicting policies hindering individuals trying to find help, even driving them away. It's not as user-friendly, or even friendly, to its intended audience as the powers that be might think.

It's like the early-20th practice of dismissing us as 'imbeciles' and 'morons'. While suggestive input should always be welcomed, no one here should assume what works for them will work for anyone else, or that any ASD individual can be normal, especially when research indicates ASD can get worse over time. Such presumptions only mean that one has mastered masking.

Like you said, everyone with ASD is different. Some people see it as part of normal human neurodiveristy while other people with ASD see it as a disease they'd like to cure. A support site needs to respect all views. It doesn't have to bother you if you change how you think about it.

 

[Mia]

Because God forbid anyone not fall in line and be normal when they really aren't, right? Sorry, that sounds EXACTLY like NT people saying, “We're all a little autistic”, “you're smarter than that, I know you are”, “if I can do it, I know you can do it,” or “don't label yourself”. No ASD / Aspie individual labels themselves, or even wants to admit they're different. We don't have to, ableism in the world at large does it for us.

Already seeing ableism here after exactly two days, confronted with a policy more or less contradicting somewhat uncontrollable characteristics inherent to ASD / Asperger's. The point of a support site certainly isn't to shame those with a condition they may have little, if any control over. This got very long, so bear with me. For those who didn't get the memo, Asperger's and autism cause erratic ranges of "socially unacceptable" behaviors and general unawareness of what IS 'socially acceptable'. Meaning...

ASD / Aspie individuals are inherently unaware their words / actions bother others in the moment, if ever at all. ASD research suggests inherent memory latency issues, meaning no corrective guidance can change that. You simply can't expect ASD / Aspie individuals to be like everyone else – THEY AREN'T. And you can't assume they're all the same, either. Either puts the whole purpose of a 'support site' out the window.

No two ASD / Aspie individuals necessarily have matched issues, nor will any two necessarily show specific improvement. It's called a SPECTRUM for a REASON. Spectrum inherently means variables and differences, and one affected individual's success with work toward improvement translates in no way to anyone else. Example:

Two brand-new, identical Shelby GT-500s. Slight performance variations are actually quite common, but hypothetically, both should drive the same, get the same fuel economy, with the same performance. But assume variances are uncommon. What if the first showed performance and economy deficits in the same conditions, with no obvious problem? Most would say, okay, let's find the problem, right?

In the real world, defective sensors fluctuating are often to blame, giving no warning. Even the driver may not feel the difference. But if everything isn't just so, performance and function suffers. Even if the engine COULD know something is off, THERE IS NO CONTROL OVER THE ROOT CAUSE. And IMPERFECT, it does the best it can with the air, fuel and spark given.

Let's say the problem is more serious – a defective or incorrect engine/transmission control unit (“brain box”, as some call it). Far beyond a simple sensor issue, it randomly bucks and surges, stalls, poor control. Maybe the transmission randomly slips, won't go into gear. Not IMPERFECT -- CRIPPLED, and THERE IS STILL NO CONTROL OVER THE ROOT CAUSE OF A MUCH BIGGER PROBLEM.

But hey, once the problem is found, hey, no biggie, replace the defective part, right? All is well in the world. Trigger is rip-snorting the quarter-mile in 11 seconds flat and otherwise driving like a Lincoln, getting 22 mpg highway.

Where is all this going? ASD / Asperger's pose a HUGE correlative problem in that you can't simply replace a human brain. Even if surgery were hypothetically possible to 'cure' ASD, I wouldn't recommend it, as it could only make things worse. Look up a story called “Flowers For Algernon.” Newer research indicates a veritable brain defect – abnormal blood vessels causing insufficient blood delivery. Even high-school biology teaches (or should) that the brain is a sensitive and sophisticated organ, and insufficient blood flow causes brain damage, making parts of the brain develop slower than others.

Result? Nine-year-old child with advanced reading and communication skills, maybe even a perceived computer whiz, with no retention of spoken / most visual instruction, or focus in school. Even their humor is odd, perfectly understanding adult jokes, completely missing those more age-appropriate, never understanding when peers and even teachers ostracize them. Already, they know they are different, but can't explain why, nor can any evaluating 'expert'.

Frustrated teachers deem the child special needs. Parents balk at the idea – God forbid anyone say their kid isn't normal, even with many obvious developmental issues, despite shaming and repeated instruction. Maybe testing shows the child far ahead of their grade placement, with a 39-year-old adult's general knowledge level and intelligence quotient in the one-twenties.

Bounced to and fro between gifted programs and special education, erratic grades continue, never maintaining the same grade in the same class for any two grading periods. All the while the child is asked, “Why? I know you're smarter than this, you could get straight A's if you wanted to,” even abused verbally, physically, and mentally when “experts” determine the child is simply 'defiant'. Frequent lack of focus in school and random erratic, incomprehensible behavior lead to constant bullying, even physical harm.

As a teenager, they consider suicide, skipping school to escape insults and laughing that now even come from faculty. Eventually extracurricular after-school activity is required to supplement failing performance, barely graduating with a far below average GPA. The lopsided, inconsistent performance repeats in college, eventually suspended with failing grades.

As an “adult”, this person consistently has trouble holding jobs or maintaining good working relationships or work habits, bouncing from job to job. Perhaps they find a job they do well, but isn't considered a 'real job'. They always feel out-of-place and anxious outside of work, often feeling they are in a movie they didn't get the script for, even in rare moments of comfort in their own skin. Frustrated with others' lack of understanding, even themselves and their general 'failure' at life, they can't explain why, never finding a valid explanation for any of it until well into their 40s.

That person is me. Much like that crippled GT-500, despite various 'shops' and 'dealerships' to 'fix' the problem, my 'surges' of failed attempts at humor, platonic / romantic relationships, 'bogging' of not understanding / retaining auditory instruction, 'control loss' in speaking out of turn, even the slipping transmission of never getting anything done particularly well, if it all, have continued throughout my life. All before veritably wrapping myself around a utility pole, because of behaviors inherent to ASD, that I don't even notice are considered 'out-of-line'.

But ableism says the ASD / Aspie individual is to blame, not caring or wanting to change? Newsflash, no magic pill exists. No one can turn a switch on or off. Research shows parts of the brain likely stopped developing at a young age. The precision of mass production does not translate to five million people having ten million children. We aren't machines that can be repaired.

All my life, people with no possible clue what they were talking about have said, “You're perfectly normal, there's nothing wrong with you”. Even after finding the most likely explanation for my idiosyncrasies, I still struggle with family frequently dogging my lack of consistent effort in self-care and basic cleaning, saying I just don't care, or my frequent unwitting repetition of things I've told them before is irritating, among other things. Obviously blood is not thicker than water.

All of which makes me shut down because I simply can't seem to do anything right, if I can even keep it in my mind long enough to do it (rare). I'm constantly told “you just have to keep your mind on what you're doing.” Guess what? I CAN'T. IT'S JUST NOT THAT SIMPLE.

I get it – no one likes repeating themselves on basic life skills, but most don't understand or believe (or don't want to) that ASD generally includes serious retention issues, and often, not much can change that. Ableism at its finest. Maybe I said earlier that a family member said I want consideration without giving it? (Not true)

A support site entrenched with ableism-minded individuals, including policies opposing certain behaviors not necessarily controllable or even noticed by ASD / Aspie individuals, has potential to do more harm than good. It smacks of expecting near-perfect normality from individuals quite possibly unable to live up to that standard. As a support site, it's counterproductive. Heaven forbid an ASD / Aspie individual feel they can be comfortable being themselves on a support site, right?

It's bad enough that even today, many ASD / Aspie individuals feel on display as a freak show for an intolerant world at large refusing to understand. But that refusal to understand and intolerance really has no place on a support site. Nor do conflicting policies hindering individuals trying to find help, even driving them away. It's not as user-friendly, or even friendly, to its intended audience as the powers that be might think.

It's like the early-20th practice of dismissing us as 'imbeciles' and 'morons'. While suggestive input should always be welcomed, no one here should assume what works for them will work for anyone else, or that any ASD individual can be normal, especially when research indicates ASD can get worse over time. Such presumptions only mean that one has mastered masking.

Best explanation I've ever read here. Thanks.