Newsweek article about about DSM-5 should interest all

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A Pill for Every Ill

If anyone thinks this should be in General Autism please speak up, thanks!

IMHO it belongs here.

More of the same BS. Aspergers is a normal human malady that is over diagnosed. The "Aspie" interviewed seems to have no problems and does not think he is autistic. More "confirmation" for the Autism Speakes crowd.


Grrrr.

for some with aspergers maybe.im glad to have a real autism diagnosis now and at no time do i negotiate the world with ease.i find every day a struggle

Aspergers is real Autism. And most people with Aspergers do have difficulties. I am not saying very high functioning Aspies do not exist, of course they do. The magazine picked a stereotyped Aspie. Interviewing only Aspies like that enhances the stereotype as Aspies as lazy excuse making frauds. This perception is having real world impact for a lot of Aspie-Autistics. They can't get diagnosed or diagnosed properly, little or no Adult services etc. It should not be the zero sum game that it has turned into. ALL people on the Autistic spectrum should get the help they need.

i said some with aspergers may not struggle,not all. it was the guy in the article that said he just breezes through life.i did not say that is true of all people with aspergers.i was just responding to the article in the post.my post was not meant as a difinative statement on aspegers

When you say you have a "real autism" diagnoses for some people it will imply that you do not believe Aspergers is "real autism". That is how I took it. For the record I have both "ASD" under the DSM 5 and "moderatly severe" AS on the DSM IV

sorry i missed spoke,that was stupid.i appologize

No problem. I understand that is what everybody does sometimes.

I completely agree with this article. The guy "with AS" interviewed doesn't surprise me.

This I think is the best line of the article:

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You know the media, the fourth estate as it has also been known, is an organisation who's sole purpose is to make money for someone else, who then goes and spends it. They spend it not on making the world a better place for everyone, just on making it better for them. Which is everything that's wrong with "Autism Speaks" in a nutshell. Like "Bikers For Autism" who do these annual fundraising events FOR "Autism Speaks." And who does "Autism Speaks" speak for? Certainly not us. Because that's not their message, and that's not where the money goes.

The DSM changes are, in fact, a tempest in a tea cup. Factually when you get past the emotional attachment to a label - or not - the intent of the changes were, are, to reflect a better understanding of the diversity in neuro-diverse. But there are groups out there that like their money flow to be steady and constant, and the way they do that is making us afraid of it (whatever it is) and that includes changes that might "water down" their money stream. And by water down, I mean by having it go to other programs and groups, and new, better understandings of how we can thrive in a neruo-typical world.

Education, knowledge, enlightenment means less money for the people who have been making the most profit. Anyone who reads the changes objectively, will see LESS people falling through the cracks, LESS ableism, less of all the bad stuff.

I was diagnosed officially after the changes to the DSM. But as my doctor pointed out when she gave me the news, I more than meet the criteria either way. So clinically for me, I'd have finally been diagnosed and have a basis from which to better understand myself and where to go with the rest of my life. ASD v.s. AS, PDD, etc or just how about just A? So the chap in the article may have been chosen because NT people don't deal well with anyone not like them, and the more one passes as NT the better he/she is in terms of being able to sell copy, and get people to pay attention and read the article.

It's not fact, is Media fiction because everything is about selling stuff and making more money for someone else, not actually helping us really. So they don't care to check the facts, and they don't care about what right or who is hurt of not. They care about the movement of small green pieces of paper. We're not real to them, probably never will be, because we're not seen as neuro-diverse, we're seen as neuro-damaged. When it makes them money, they'll parade out the troop and tired images of children having meltdowns. Mothers talking about how she how there's a cure by the time her daughter is old enough to have children while struggling with a little girl she's not even trying to reach. They will play on the misery, the suffering, the "lost lives, money and freedom" because well Autism just sucks so much for them.

You know what?

I was one of those children. The words Autism or Asperger's Syndrome didn't exist back then. Demon, child and life destroying vaccines didn't even exist then the way they do now. You look at facts, at history, Autism was a term coined by an American researcher at the same time Han's Asperger was playing with little boys. Fact is, they were, in fact, studying the same thing. But there was money to be made, and things to be afraid of, and people to make parents afraid of them. When I was two, and five, and eight the word, the term, was "Retardation" or "ret*d" as my dad called me. My father couldn't communicate with me at all, so everything was met with violence and abuse. He didn't even try. Especially when at the end of second grade, the school psychologist ran me through all sorts of tests, found out that I was dumber than a box of rocks, and was going to sideline my LIFE into the "Remedial Education Room" at the start of the third grade because I couldn't read or write at all, and wasn't trying. Because no one was listening, no one was hearing my questions about why I had to do this, and why it all caused me so much pain.

Thankfully my Mom who called me her little shadow and noticed that I could sit quietly and watch her, and then be able to do pretty much anything she could. My Mom saw past labels and fear, and we sat down in a really dark quiet place - which we BOTH preferred - and LISTENED to me and UNDERSTOOD what I was trying to say. So I left second grade mentally ret*d, and started third grade the idiot savant with Master's reading, comprehension and vocabulary. In the few months between the psychologist saying I was "ret*d" and being tested again at the start of third grade I'd made major strides, had read and memorized the dictionary, the complete Encyclopedia Britannica and a mountain of other books - TWICE.

Oh my where they all shocked and confused, and I was still just as useless and ret*d as far as my dad was concerned. I had photographic memory back then, and when the noise, and light, and pain got turned down enough for me to function, I could rip through books so fast that Evelyn Wood would still be just opening the cover by comparison. Socially and in so many other ways, I was still "ret*d" and we went through another big battle in 4th grade becuase I could write to expectation.

All the way along my father was afraid of the neuro-damaged freak, and would beat me, abuse me, withhold food and love, and make me sit utterly still, on my hands, looking at a spot on the wall, or he'd beat me raw again. And again. And again. For me, it was all still screaming, pain, meltdowns and a failure to be heard or understood. Being beaten and abused, well yeah, made it worse. But when my Dad wasn't around, my Mom loved me, held me, listened to me, and tried to protect me by trying to understand me. But you see, Mom, she'd never had even the vaccinations I'd had, and you know, looking back, I can see she was somewhere on the spectrum herself. A spectrum that didn't exist then, but does now, and I know of at least three more people who don't believe "Autism Speaks" and are getting diagnosis, treatment and validation as human beings and are smart enough not to fall for what the media, or Autism Speaks says.

The media is, always, the last place you should look for anything helpful, useful, true, or even all that accurate.

I'm neuro-diverse, I am an autistic woman. I am not neuro-damaged, and I'm not some cherry picked person out of an article strung together with sound bites and enough information to maybe make you read and turn pages long enough to be exposed to product placement by advertisers. I neither want nor need a "cure" for Autism, nor do I want to be told I'm almost normal, so it's close enough and I don't count.

Follow the money in media. People who are somehow "less autistic" than others who are not being listened to or understood at all are two different "classes" of people because we have maybe, marginally a better chance at being heard and understood, and they don't. Autism Speaks and organizations with the same model and operations fear us for we are mighty and verbal - sometimes. They want to chuck out folks that don't fit the poor, poor, pitiful creature in the dark corner rocking and crying in pain and misery. Because we don't make them any money and can and will call them out on it.

Used to be that when I was non-verbal if I was lucky I could write or finger spell enough to be heard. Now thanks to Carly Fleischmann I have an app on my phone that can speak for me. So am I having a good day, or a bad day? Clearly a good enough day I can write this message. But good enough to be out in public, out in the bright lights and noise and sensory onslaught that pushes me ever closer to another melt down? No way to tell from here, because I'm crafting this message, and you are seeing, and hearing what I want you to hear. Media is the same way, full stop. doesn't matter who or when or even why, it's media and should be carefully evaluated. I wonder how many people who are still having issues with the changes to the DSM have actually read, letter by letter, everything the wrote and compared it to what was in the old version? Anyone? Anyone other than me I mean? Not the hundreds, thousands of posts, opinions and articles, but actually read and understood what is really going on?

I'm autistic. Would have been, could have been, might have been called Apergers once. I selected that as my profile entry because it's the only thing that says I was actually diagnosed.

On a good day, with the right wind conditions, I can fly. I can spend the day in the sky spinning, flapping, laughing, my heart full of light talking up a blue streak when I'm not laughing or giggling, or repeating the same thing over and over again. On a good day I can ride my bike up and down hills, steering around 180 degree turns with my hips, my hands and arms up and out catching the air all while pedaling madly.

On a bad day, I'm in the back of my closet curled up with blankets and pillows rocking and crying. Or slamming into walls, corners, door frames and furniture on my way to and from the loo. On a really, really, really, bad day, I wake up with a fever, freezing cold, crying and hope I can reach for the meds that will bring me out of adrenal crisis before it turns into shock and kills me.

And here's where it gets fun. An autistic meltdown can trigger adrenal crisis and without care, kill me. Likewise an Adrenal crisis can cause an autistic meltdown, which mich cause me not to get my meds into me and without care, kill me.

Does it really, really, really MATTER what my diagnosis is called or what the media says? I'm autistic AND I have a rage genetic disorder that can cause me to go into shock and die. In thirty minutes or less sometimes.

So forgive me if I don't buy into ableist media nonsense, and forgive me if I don't see the chap from the article as anything but a media shill who was having a good day, or fighting really hard to "pass" for normal because that's what was beat or conditioned into him. I see him as someone who for whatever reasons was trying to do the right thing for the right reasons at the right time, with the wrong people. How do you know he didn't go home after that, have a meltdown, and spend the next four days or more trying to dig out?

I live with this stuff, and have, every day of my life. It didn't suddenly become real because I got diagnosed finally, it just means that I was able to afford access to medical care that gave this a name, several in fact, and is helping me to have a better life, and improved tools and skills to help shorten or stop adrenal crisis before it becomes adrenal shock. I know better now what it is and I'm no longer that ret*d kid crying and crashing into walls all the time and non-verbal when I'm not sick for weeks at a time unable to eat solid food or do anything but suffer, cry and crash my way to and from the loo.

Love each other. Turn off the glowy, noisy, box full of other people's message trying to get your money or feel guilt for not being able to give them any. Stop believing in stories neuro-typical put together to try to explain things, or take money and find what works for you and lets you love yourself and others and do that. You know what?

Autism is a word someone invented to try and put all of us into boxes that explain at a glace that we're neuro-damaged. Aspergers, oh god how funny that is. You know why that word exists? Because Hans Asperger had himself invested in making a name/money for himself. Autism was used by Eugen Bleuler in 1908, but it didn't catch on because his ego wasn't really into the project.

Look past the stigma, the name and blame games, and the other nonsense NT folks and the media will try to foist upon us and see people who are doing the best they can with what they have, that WE have, to work with. For me someone's worth isn't dependent on what diagnosis they do or don't have or what level of function they do or don't have at any given time. For me everyone is worthy of love and care and understanding, compassion and assistance to live a better life.

I'm neuro-diverse, not neuro-damaged.

Greeneyezengirl, how did you learn to communicate as a child? And did you know how to read long before anyone knew you did?
I am so frustrated with the assumption that people have no intelligence just because they cannot speak or communicate in a way that everyone understands. I am determined to find a way to show the world that there is More to these silent autistics, but I am missing a large part of the puzzle. Where do I begin?

You know, I wish I had all the answers, sadly I do not. It is claimed I was born talking, that I picked up speech almost instantly would have had to have been the case, except of course when I get overloaded and am no longer capable of speech. I taught myself to finger spell and was going to teach myself to sign - may - probably still will - but for want of signing I have an app on my phone. I don't know exactly when or how I acquired speech. I do know remember my abcs and 123s as song(s) and stim toys that otherwise had no meaning to me. Somehow I managed to make it to very nearly the end of second grade without being able to read, and being frustrated at the pendantic "run spot run, run, run, run" Especially since I was being given very conflicting inputs. Verbal stimming was okay when they wanted me to do it, be not okay when I'd be spinning, flapping and singing my abcs wasn't? I was, even to this day can be, horribly literal. So when a problem was identifitied my father beat and abused me and as I was sitting there crying and trying to understand what he was screaming at me, he threw a book at me. I went crying to mom clutching the book because I wanted very much for someone to slow down enough so that I could catch up. Mom did.

She held me, let me cry, and then listened to me and answered my questions. She helped me make the connections inside my head to connect pictures of words, with pictures of letters, with pictures of objects, and then the whole sounding things out. From there, things came together fast, because the light went on inside my head and I could do it for myself in a dark quiet place (the eves in the attic behind the wall board where my dad couldn't find me) and I spent every walking moment, which was and has always been a lot because I have had long term sleep problems. And I would just take pictures of pages in my head, and words, and letters and connect them all up, sound it out, and move on. Very fast. Then once my brain got used to doing that, it became easier and faster to do until in very short order - days - it was all happening without me having to spend so much time thinking about it, because my brain created a translation program to do it all for me. So when I read, even to this day, it's like watching a movie play, and I get lost in other worlds, other places, with other people that don't yell at me, the lights are not too bright, the sound is not too loud, the feelings aren't to strong and there is no pressure on me. And I had made the connection in my head between things my father didn't like and it hurt less to pretend to be someone I wasn't than the violence, beatings, lack of food and all the extra pain and HATE I could feel coming off my father. You see that has always been both a blessing and a curse. I can feel what other people are feeling. So it made connecting information easier, it made relating to others easier because I knew how I felt and what made me feel that way and I didn't want other people to feel that way. So I created this person, and she stood between me and the outside world for such a long, long time.

Yes, there is SO MUCH more than silence, but you have to connect first, and you have to gently, quietly, calmly, slowly reach out to us in a way we can handle. At a speed we can handle.

To this day if I'm in a noisy place walking with someone, trying to talk, and I'm not walking fast enough, she'll be walking ten feet in front of me, facing away from me and I will not be able to hear her at all. I can even be sitting in a room looking right at you, and if there is too much other noise or light or anything, I'll see your mouth moving but I will not be able to hear you. Likewise if my brain get swamped with too much stuff all at the same time and I get over stressed and heading toward meltdown, I will lose the ability to speak. If inside somewhere I feel like your are not hearing what I have to say, or if I'm forced to repeat the same thing over and over again, I'll wind up mute and deaf. Sometimes when I'm really freaked out and heading toward meltdown, I just shut off for a while. Lots of time at all kinds of doctors when I was a kid, them trying to figure out what was wrong with me. They thought it was some kind of epilepsy. Except it wasn't showing all the other signs, eeg's showed nothing useful or understandable, and so that just added to the whole "my kid is a ret*d" frustration for my father. They tried me on drugs, oh some horrible stuff, and between my body and my brain not behaving the way it should, the drugs were horrible and often only made me worse.

But Autism didn't even really exist back then. Sure the word was around, but it meant nothing, and I grew up in farm country with a nice old guy who made house calls and otherwise sent us all into the city 45 minutes away.

I didn't learn about facial expressions and body language until I was in my 20s because someone I knew and loved told me it was really important. So I sat and watch other people, felt what they were feeling when they made those faces and movement and learned how to do that too. I'm a natural mimic, so much so that despite never having been to England my British (London specifically) accent is better than my american one. So much so that if I lose track, get really stressed, or really happy, or any number of other things my British English is easier to understand than my American. As near as I can tell it's because it's slower and more precise, and there's more of a flow to it, but it's speculation at best and doesn't explain my frequent use of British turns of phrase and speech patterns that Yanks - sorry, Americans don't use. Drove my late husband right round the bend - ah, crazy - because he had family from the UK and they all thought I'd emigrated, because as above, it slips in all the time. It's like British English is a second language and American is a third. I don't really think in either of them unless I'm scripting what I'm going to say, even then I often have troubles.

I wish I could explain it all, I wish I could tell you how it all works, but I have no idea. It's not like my brain came with a users manual. I will say that ABA or violence and abuse will work, but is not healthy. I'm a right sorry mess I am. Bloody heck, that was cockney, which is different, but I know I got that from "My Fair Lady" don'tcha know, Eliza Dolittle afore Professor Higgin's had 'is way with 'er and cleaned 'er up into a right proper lady. That I can and often do easily, it's like taking one set of programming code out and dropping in another. Body language and facial expressions likewise. It's one of the apparent advantages of being female and on the spectrum as I understand it, we can be natural mimics when we want or need to be, but I often wonder WHO I AM without it all.

Things like humor I still don't get quite right, when I'm serious people think I'm being funny, when I'm being funny they think I'm serious. Except for those rare times when it all kinda flows together... And of course often other people on the spectrum find me utterly hysterical and I'm not trying to be, but it feels good so I don't over think it, which I'm prone to do about just about everything.

I didn't start regularly and seriously smiling spontaneously until I was in my late thirties early forties and when I did I thought there was something wrong with my face. My facial muscles were in terrible pain there for a while and I though I had some sort of flesh eat disease until a family member explained I was using muscles I never had before and a lot. Sarcasm, subtlety, nuance and a better understanding of humor came around that time, and still often eludes me, especially if there's to much going on. I turn 50 in September and I still have people come up and hug me and tell me how utterly adorable I am and I'll have no idea why. But I can feel they are happy, and happy with me, and so it's okay, I just go with it. People often remark that given all the abuse I've been through it's amazing I'm so innocent and willing to connect to people.

Nothing about my life has ever made much sense except for the things I've done on purpose with thought and deliberation. I get beaten, abused, yelled at so forth because I couldn't read, then months later I'd get beaten, abused, yelled at and so forth because instead of stimming like crazy, I'm sitting quietly completely unresponsive to the outside world reading. Because when I'm reading, I'm in the book, and I don't have to stim or spin or hurt because everything is too much. Which is a good thing. But sometimes, when the outside world is too much I still lock up and shut down. Like a few weeks ago, the fire alarm went off in the mall. It was practically empty, because a friend and I were walking before the mall opened early in the morning. The multi-frequency solics, the music still playing and the lights flashing and I tried to keep moving and my brain just locked up all my muscles and I was stuck. Had it been an actual fire, someone would have had to carry me out. After it finally stopped, my friend who was trying to talk to me and get me to keep moving said why don't we call it a day and I came home and didn't leave the house for several days.

So I wish I could tell you more, but much of what I've learned and can do was a way to prevent beatings and abuse. there's also the matter of the fact that that person I'd created to stand between me and the rest of the world is gone. Because my husband treated me worse than my father had, and after so many meltdowns I / she burned out. With her went a lot of the stuff that was helping me hide in the back of my head in the dark, humming and rocking. So now I'm having to learn how to be a "real person" (whatever that means) all over again. And now that I'm so aware of it, spending so much time thinking and trying not to short out again, I'm seeing how much of me is someone else. Facial expressions and body language I've picked up from other people. Other people close to me notice it to, I tend to do a lot of mirroring as I understand it's called and mimicking, because I spend enough time with someone, and they rub off on me.

I hope this helped - heck I hope it even made some sense - but I have to go to bed now. It's 0151 eastern and my head is crunchy. Sorry.

Sami

I love that quote because it is so true.