A YouTube dicussion...

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I've been having a discussion with the parent of a low functioning autistic. I'll post the exchange in the comments below. Am I talking SSSSSSSSSSSSh1tt? What's up with them? Are they in the right? Tell me what you think.
Thanks.

(I post a comment on an Autism Speaks video, they reply, I reply, they send this...)

hmmmmmmm
As a teacher and a parent to someone with autism for over 20 years I hope Im not too ignorant. Id hate to think Id wasted all this time loving caring and nurturing all these autistic people only to wind up ignorant.

AS helps get the word out, and helps raise money for cures and research, and evidently they need to do it a lot more cause no one in the forum seems to believe that autism is a terrible tragedy....I think they feel the video is all made up or somehting. Well..if they dont want a cure...its their tax dollars supporting my kid to the tune of 100 grand a year. Hope theyre OK with that.

(so I send this)

Re: hmmmmmmm
(I've just accidentally deleted the reply I wrote, so I'll try and quickly write a more brief version, which will inevitably not be nearly as good)

There are plenty of videos here on YouTube explaining why Autism Speaks are bad, so I'll skip that bit, but here's what I have to say on the rest of your message:

On finding a cure:
Autism is (often a large) part of who people who have it are. To say that you want a cure is both selfish (at least often) and an insult to those individuals. People who want a cure mostly a) want one because it does not fit into their pretty picture of a perfect society and b) are not autistic.

On autism, the terrible tragedy:
Autism can be tough, for people with both low and high functioning forms, and f course for parents, but as Dr. Tony Attwood said, people with [I think he said asperger's, but I think It can be applied more broadly] don't suffer from [autism, asperger's, whatever], they suffer from other people. We don't need to be looking for a cure, looking for a way to get rid of them, we need to look into how we can understand them and from that, learn how we can help them (note, "them", not "us").

And on a personal note:
I'd much rather that tax money went towards helping people with autism (I really hope that it does help) than have it go towards funding the military or what-have-you. But that really is just my opinion, and it's a whole other story.




P.S. Not to sound rude but (it will sound rude, sorry) I'd hate to think that you're a teacher with grammar like that. Sorry (I mean it).

(they send this)

Re: Re: hmmmmmmm
my responses.....


On finding a cure:
Autism is (often a large) part of who people who have it are. To say that you want a cure is both selfish (at least often) and an insult to those individuals.
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When I speak of autism I refer to the brand of autism that is seen in the You Tube video which WAS autism until they expanded the diagnoses so dramaticaly. I meet people all the time now who claim to be college professionals, married with kids and running for president.And they Insist they are autistic. Where I come from you need to be profoundly deficient in your communication and emotional processing skills to be considered autistic. The folks on the forum are tremendously communicative...not to mention incredibly rude and misinformed. Their fave words are c**t and Nazi, 2 words most seriously autistic people could barely comprehend.

Well, I dont care about them and neither does AS. They made the video to highlight the horror of loving---and living with--- someone whom autism has reduced to a near zombie state. All the people I work with are on SS and need group homes and will for life. Many of them need to be put away while still in their childhood years...am I the only one who thinks thats tragic???
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People who want a cure mostly a) want one because it does not fit into their pretty picture of a perfect society and b) are not autistic.

People want a cure because they love their kids and want them to have healthy normal productive lives.No ones asking for a perfect society. We just want our kids to grow up into independent well adjusted happy individuals who can make their way through the world. Really autistic people with the classic diagnosis are practically helpless and it costs 100 grand to house them...if you can get on the 25 year wait list.
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On autism, the terrible tragedy:
Autism can be tough, for people with both low and high functioning forms, and of course for parents,

Moderate to low functioning autism is just about the worst thing that can happen to anyone and their families.To lose your voice, your mind, your personality, to disappear bit by bit into nothingness and become hopelessly vegetive or violently agressive....why the hell WOULD'NT anyone want to help these people?? Parents are torn apart by the work, the stress and the worry. You cant leave your house or visit relatives. Financially you are devastated as you try anything to help your kid make a turnaroiund.You wantch all the other kids grow and learn and develope and your child just gets worse and worse. Yup, its pretty bad.

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but as Dr. Tony Attwood said, people with [I think he said asperger's, but I think It can be applied more broadly] don't suffer from [autism, asperger's, whatever], they suffer from other people.
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Tony Attwood hasnt done a lot of respite care, I see. Or he is just dealing with Aspergers people who can often pretty much function OK.But the video was dealing with a much harsher brand of autism.
On that point nearly 1 million dollars of therapy applied to my son has helped him become a very sweet nice kid who is well liked by people who accept him for what he is and thats good. But he cannot get a job. He cannot drive a car. He cannot make friends, nor could he understand or protect himself from someone who could hurt him. Im a nervous wreck when he goes to the toilet himself because I never know if theres a pervert in there to prey on him.

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We don't need to be looking for a cure, looking for a way to get rid of them, we need to look into how we can understand them and from that, learn how we can help them (note, "them", not "us").
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Nope, we need a cure cause every human being has the right to live a fulfilled life of independence.Again, you're looking at this with the idea that autism equals quirky genious...and thats really not true. Fewer than 1% are savants, and while plenty of people claim to be on the spectrum, you really cannot be considered autistic if you can speak, read, write ....and type ...in fluent complex English.Come to my sons school and day care center it's like dawn of the damned....everyone is walking around the halls in a dream...they all appear to be completely out of their mind. Thats why we want a cure. We love our kids, and we want them back. I'd settle for just a better OCD medication to help my son focus more on reality instead of worrying about Canadian geese{one obsession} all day long.Maybe then he could make friends and have a job.

And on a personal note:
I'd much rather that tax money went towards helping people with autism (I really hope that it does help) than have it go towards funding the military or what-have-you. But that really is just my opinion, and it's a whole other story.

The US gov spends 90 billion a year on autism services and thats with most of them living at home with their families!! ! That amount will triple as the baby boomer generation ages and cannot do all the work of caring for their adult kids at home.



P.S. Not to sound rude but (it will sound rude, sorry) I'd hate to think that you're a teacher with grammar like that. Sorry (I mean it).
Sent to: taraterm2

If I have poor grammar its due to fast typing, and typing the same thing over and over and over again to people wh simply dont understand how badly these kids are off and how they need help.

Do you know that when you call DDD for service support you are advised to cry on the phone so they think you are serious???and need more money?? only the worst cases get paid attention to. Alex receives 16 grand a year from DDD for his day care center and because I chose the best one I could find{and the only one that therapizes clients after 21}there was no money for transportation. I drive 68 miles a day to take him there and back, because I dont want him in a typical day care center where they shove a cupcake at them and turn up the TV.

If people do not want to donate to AS that is their right, but they shouldnt diss the video...it tells a tragic and all too true tale.

(I send this)

Re: Re: Re: hmmmmmmm
This will be a lot more brief than these last two exchanges (I hope), because I think that a lot of what has been said is just the same thing repeated in different words. So to begin...

On what autism is (or who is REALLY autistic):
Seeing as you do seem to be ignorant on this matter I will explain it here. Autism is, of course, a spectrum, and so it manifests in many many different ways, but to keep things (very) simple, we can simplify it to two categories; high functioning and low functioning. High functioning is the "quirky genious" you speak of (though, of course, not everyone with high functioning AS is a genius). And low functioning is your "tr00" autism. Your son clearly falls into the low functioning category. Both are very real and very different.

On whether you are the only one who thinks that it is tragic (putting low functioning autistics in homes:
No.

On "...want them to have healthy normal productive lives":
You have proved my point PERFECTLY.

On loosing things:
This point you make is severely flawed. People with (LF) autism do not "loose" these things, they are simply not born with them (except the personality one, that's pretty tight).

On "worse" v "different":
I think that this is important, and no, I'm not just talking about the "quirky genious" type.

On you being a nervous wreck with the toilet thing:
Talk about OTT. You sound like my mother (serious anxiety+paranoia). No offence.

On rights:
s**t happens. Autism can seem like s**t. (LF) Autistic people are different, and so they wont live independently, but sometimes it happens and are their lives worth any less because of it? Would you have had your son aborted had you known that he was autistic?

On Autism Speaks:
Have you watched any YouTube videos against them yet? I recommend it as the quickest way to find out what's really going on with them.


P.S. I'm sorry to here that other people you have been talking with have been so rude. I really believe that that sort of behaviour jeopardises any valid argument one may have.

P.P.S. I do love the word "c**t" but not as an insult, purely for its poetic qualities.

(they send this)


Actually, they Do lose their abilities. Many, Id say most...parents report their kids were doing just grand before the 3 or 4 year mark when sudden loss of development is reported., and we slowly watch the kids deteriorate, stopping the smiles, stopping the learning, slowly deteriorating completely into complete strangers...or screaming manicas that require 24/7 contol.

On you being a nervous wreck with the toilet thing:
Talk about OTT. You sound like my mother (serious anxiety+paranoia). No offence

Im not a nervous wreck about toileting, where did you get that?? Im lucky, Alex was trained by 5. Plenty of them arent though, and three weeks after my sons diagnoses I was sent offers from diaper companies to join their lifetime supply club. Sorry if we parents get a lil agitated at the thought of changing our 45 year old's dipes every day.


s**t happens. Autism can seem like s**t. (LF) Autistic people are different, and so they wont live independently, but sometimes it happens and are their lives worth any less because of it?

Yes, considerably. They become non entities and all their potential goes down the drain. YOU might think life spent in a day care center watching TV is cool...not me.And a sizable portion of the homeless are on the autistic spectrum, unwanted, unloved, uncared for. Starving in streets and wandering aimlessly.Without a cure or some kind of improvement, my son has no future. That is not me being a Nazi or a c**t. Thats simply stating the facts. We hang on in the hopes that he matures with more therapy, plenty of love...and maybe a new medication or two that can help his cognizence.I quit my job years ago and gave up on any hope of a career so I could tend to him full time when he wasnt in school. its a huge sacrifice and not eveyone can make it.

Would you have had your son aborted had you known that he was autistic?

Obviously a hard question to answer. But all parents deserve to know what they are getting into ahead of time, its their right.After all. they do all the work, pay all the bills, deal with all the misery.If we find out two gene carrying parents risk an autistic child they can adopt instead, or opt out of having kids altogether.Thats how Tay Sachs disease was almost wiped out...smart parents making the right choices.If they choose to bring an autistic kid into the world they can be prepared with tons of money, moving to a state with extremely progressive special needs laws, making sure they have a lawyer or two in the family and with the understanding that their lives will nevcer be the same. Plus, they will probably never have sex again.Too tired.

One thing is certain, the general public must be informed as to how tough autism can be and thats why I applaud the video. They wont give out more money for autism programs if all these people keep yapping on and on about how ducky autism is and how they wouldnt want to be anything else.

(I send this)

Re: Re: low functioning loss
"Im not a nervous wreck about toileting, where did you get that??"

"Im a nervous wreck when he goes to the toilet himself because I never know if theres a pervert in there to prey on him." There.

On the value of autistic lives:
Wow. I don't know what else to say.

On abortion:
Knowing things about your kids before they are born has dangerous implications. If someone is going to have a child they have to accept that there is a chance that there may be problems.

On cool day care:
Actually I said that I think it is bad. I do not think that that is what should be done at all.

The video absolutely misrepresents autism, it demonises it. It is not to be demonised, it is to be understood and accepted.

(and this)

Re: Re: low functioning loss
A couple of things I missed:


1) Loss:
They do not loose things. They develop differently.

2) Canadian geese:
If studying Canadian geese makes your son happy, that is what he should do.


(am I an idiot? Has anyone been bothered to read all this cr"p? Can I get away with using question marks inside of brackets?)

She has a very rigid view of autism.

I'm moderate functioning. I am no vegetable and I know others that have autism worse than me aren't too.
Just because you can't communicate properly doesn't mean you haven't got any idea about anything.
I have more of an idea than them. Though I am an adult and had to develop these skills.

Where is this video? I want to join in.

I've never met a vegetable though I've met many who have been called one including me at some times of my life. Been described as having such severe developmental disturbances that I couldn't develop a cohesive personality. Been described (recently) as having the cognitive functioning of an infant. Have listened to professionals in a mental hospital on the other side of an isolation room door say all kinds of things. On how I shouldn't be there because I would never get better. Waste of space that should be given to people with a future. Some of those same ones took advantage of a bad reaction to meds to try to act like it "took its course and we couldn't catch it in time" except that a VNA nurse spotted it so they bad to save my life after all. Heard that I wasn't a real person nor a person deserving any sympathy. All kinds of things through that door.

When I go from able to type to not able to type I have watched other people turn from superficially pleasant to cruel and scary. Seriously. It's like when they think I can't type then they think I can't hear or see them. (Actually it's more like when I CAN type I don't perceive them well.) Been screamed at, cussed at, hit at. Heard them muttering loudly about me as if they were alone. (You can tell you're not a person to someone when they act like they're alone around you. Not as in comfortable. As in talking out loud to themselves and picking their noses and things they normally wouldn't do with people around.) And the things they say and the way they act is horrifying. Been easily proclaimed a nonperson by all kinds of people, even people who saw me typing five minutes before. And not just the one's who think my typing is a fancy trick using a computer coming up with the responses by themselves.)

But I've never been a true nonperson. Not even when I fit Singer's definition. Not even when I can't perceive my senses or thoughts or time and am just namelessly aware. Still a person. And most "low functioning" autistic people think more than that.

Some other facts:

Losing abilities after the age of three is technically CDD not autism.

All but possibly one or two of Kanner's original patients were what could in one sense or another be called high functioning or even AS today.

Several of them went to college and did well.

If the original diagnosed autistic people weren't autistic then what were they?

So called "low functioning" people were added in later. That's why for a long time Kanner autism meant high functioning in most people's minds.

Also even many so called low functioning autistic people have been to college like the woman in Autism Is a World. When using the word low functioning in terms of IQ then most can communicate, some extremely well, some even have multiple college degrees like Donna Williams (with a 67 IQ), and she wrote bestselling books too.

Also that video doesn't show what a lot of people think it shows. I once asked a group of people who had seen it what the kids in it were incapable of. Then I showed it to them again showing them the kids had those abilities after all. Apparently the camerawork and the words and style manipulate viewers into not seeing what is right in front of them. If this is autism everyday we are talking about. I actually like seeing the kids in that video. It's the adults I can't stand generally.

There needs to be some way for autistic adults with money and some emotional maturity to take the unloved, unwanted autistic children off their hateful parents' hands and raise them right so they actually learn something (if all they learn is that they're valuable, at least that's better than what this kid is probably going through). I wish I were older so when people complain about their autie kids I could say "I'll take them, since you clearly wish they didn't exist."

Is that even legal?

Thank you so much everyone (especially anbuend).