Re: You Tube Video Blasts Autism Speaks

May 25, 2007

Lenny,

Hon, I have to respectfully disagree with you on this subject.

I understand what you are saying, but I also think there is a lack of knowledge

when it

comes to Asperger's. Most attention goes to more severe cases of autism, and the

only

media coverage goes towards very high functioning aspergers.

Asperger's has a spectrum in itself, varying from very high functioning that

probably fits

what you describe as being disadvantaged rather than disabled. On the other end,

it is

more like high functioning autism.

A person would be hardpressed to find a kid with asperger's that is higher

functioning

than my son. BUT, he has the SAME IDENTICAL problems and symptoms as a child

with

autism, just on another level.

He barely spoke at all as a toddler. When he did, he reversed his pronouns, did

not

understand language and was evaluated at 3 years of age as being 15 months

behind in

language development. He has profound speech disorder, auditory processing

disorder

and still doesn't know simple words like what an 'end table' is. He never

responded to his

name, ignored people, gets fixated on things and is in a constant state of

confusion about

life in general.

His coordination problems were so bad that he could not walk in shoes. He is

eleven years

old and still can't use a knife to cut his own food. He couldn't skip until the

age of 8 and

has such severe upper body weakness that he canot even hold his baby sister

without her

slipping within moments. He is painfully thin, has the same food likes and

dislikes as

anyone else's kid here and has the same issues with not feeling all levels of

pain.

He gets easily frustrated, has melt downs and cries because we called him to

dinner and

he thinks we were yelling at him because we raised our voices.

He lined up cars, just like autistic kids do. He fixated on small stones and

threw them at

the ground over and over again for hours, just like an autistic kid would do. He

made no

eye contact, curled away from touches, and so on and so on and so on.

He has come a long long way and we are so proud of him, but he struggles every

day of

his life. And while the situations are very different, in some ways it is better

and others are

worse. He has to live and function in a world he does not understand. He has no

aid

walking around with him all day, keeping him safe and protected from noises,

anxieties

and bullies. He has the constant struggle of teachers with high expectations

that he

cannot meet. He tries to fit in and can't undersand what he does wrong.

He is disabled, but with no protection. And while I am ecstatic that he is doing

as well as

he does, I also live with an a child who has the same issues any child here has

with the

exception of him having words. The only other difference is the level of

disability in each

area, some of which may be worse for him than for others who are considered more

severe.

Asperger's is autism, and the only real defining difference is that they

acquired language

at a normal level. It has been heavily debated as to whether or not asperger's

should even

be defined as different than high functioning autism since many with asperger's,

my son

included, DID have language development delays. Because there is a known

spectrum of

problems with autism, and asperger's should not be differentiated as something

other

than autism. It is simply a higher functioning form with its own set of

individual problems.

I am not trying to say that it is as bad as having classic or more severe

autism. It is just

different in that the same symptoms are present, but at a different level. We

all are in the

same boat of autism which is why we are all here. Some boats may be better than

others,

but the water we are treading is the same river going upstream.

And yes, parents of kids with asperger's are in one boat that is definately

different. We

have kids that do understand what is going on, that they are different and we

are raising

them to be proud of themselves, to have high self esteem and to not 'feel'

disabled, if we

can. We struggle with telling them that it is ok to be different, that we are

all different, that

being who they are is ok.

As they grow up, God willing, they will be proud of themselves and like who they

are,

despite their 'autism'. And if we can accomplish that, they will probably feel

much like the

neurodiverse group does. So...it is harder for us to bash them for all of their

thoughts and

opinions. No, we don't agree that autism is a choice. We don't agree that autism

should

not be cured. But, we can understand how they feel proud of themselves, despite

having

autism.

It is a catch 22 for us and for our kids. I believe that is what was

trying to convey.

I am actually glad this issue came up. I think the lack of knowledge about

asperger's drives

a lot of people to question it. I know I have caught 'looks' a few times from

people at rallys

for even being there because my son was not 'autistic' enough. One woman went as

far as

to ask me right out why I was there.

Maybe it was time for the discussion to open up so everyone can realize that

parents of

kids with asperger's are also dealing with plenty on our plates as well, and we

are here

fighting for the same reasons.

Take care, all.

Col

> >

> > So my son with Aspergers doesn't have a disability? It's all in my

> > head??

>

> No , it is not in your head. It is in the legal definition of

> disability. Words mean things. I didn't make it up. While it does vary

> from state to state, to be disabled means you are disabled. It does

> not mean you are high functioning. It means, for example you are

> blind, not just severly nearsighted. It means, for example, you are

> deaf, not just hard of hearing. It means, more or less, that if you

> are disabled, you require profound support, intervention and care

> 24/7. Aperger Syndrome is not a disability. Google DSM-IV.

>

> I do not exclude the high functioning disadvantaged from my advocacy.

> Why do you put other words in my mouth? For someday, I hope my son

> becomes merely HF disadvantaged, and not the profoundly disabled he is

> now. But I am entirely clear that my advocacy starts with the

> disabled first. I resist any advocacy that comes at the expense of the

> disabled. I resist any advocacy that attempts to trivialized how

> horrible autism is so that some HF people can feel better about

> themselves. Not at the expense of children like mine, they won't.

>

> Lenny

>

May 25, 2007

I thought bill was a term used by suppliers to collect their money from NBC.

Re: You Tube Video Blasts Autism Speaks

I don't know about Bill , but I don't think Bob would.> > >> > > I don't care too much for the video's author, Kent> > , aka> > "Christschool." He's a pretty > > > vicious fella who attacks those of us who are> > using biomedical> > interventions to try to help > > > our kids.> > > > > > > > > > > > > > ---------------------------------> > Park yourself in front of a world of choices in> > alternative vehicles.> > Visit the Auto Green Center.> > > > __________________________________________________________Shape in your own image. Join our Network Research Panel today! http://surveylink./gmrs/_panel_invite.asp?a=7>

May 25, 2007

The spectrum is now HUGE. Every kid with a "quirk" now has an Autism Spectrum Diagnosis. My oldest is 20 years old. Had he been a toddler today, no doubt he would have had a "spectrum" diagnosis. Instead, he was diagnosed with ADHD and "social anxiety disorder". I returned to graduate school when he was 8. The light went on. I returned to the ped neurologist, and she was "not comfortable giving a child a *spectrum* diagnosis unless they presented with a greater severity of symptoms" and left his diagnosis the same. He had no endless hours of OT, social skills training..we all know the drill. Brilliant beyond what a test could determine and what a school district could understand, he graduated in the top 10% of his class of 500 and began taking college courses 1 week after he left high school. He is in a pre med program at a private university and

doing very well. "We" have adjusted his courseload so he is successful, and he attends courses at the local community college during the summer and over Holiday Break so he is not "behind". He plans to attend medical school and if he does not get in, he will move into nursing. He works for a wonderful, family owned chain of specialty supermarkets. They recognized his "brilliance" and unbelievable kindness and dedication and brought him into the pharmacy and are training him as a pharmacy technician <no training necessary, he took to the job like hand in glove> offered him a summer internship there and are granting him scholarship money. He was born in 1987, so the vaccine thing may have played into this, however I do believe this is genetics. If my 45 year old brother was a toddler today, he would have no doubt have had an Asperger's Diagnosis. His childhood, adolesence and even adult hood were unbelievably difficult

for him. Who knew. He wasn't the "non verbal, stimming kid" that people expect to see. He had other issues that 40 some years ago were dismissed as "developmental things." Would I say that my son and brother have autism? NO. But today, with the spectrum including every quirky kid that presents in a docs office, that's the way of the world. Do I think they are two very different and specific disorders? Absolutely. My youngest is 8, he was born in 1999. He was vax'd. Yes he had the "genetic thing" but his challenges are far greater than his brother. True there was an incident at birth and we KNEW something was coming. But I also knew to document every step. And I clearly saw cognitive changes (and documented same) after each vaccination. We are now using Cutler's Protocol along with some great biomedical support. We are 95% there. He clearly

has his brothers "brilliance" although he'll never do well on tests. He has fine motor issues (which his brother never had) and sensory issues that also never were apparent with his older sibling. He has mercury damage in every sense of the word. Two boys, same genetics. One was mercury damaged one was not. There's no denying this to someone like me. I see it clearly..... Soon they'll widen the spectrum to include those with OCD, depression and just about every quirk that walks into a psychiatrists/neurologists/pediatricians office. Greater opportunity for pharma to sell more drugs. Soon we'll all be "on the spectrum". What then??? Sophia <rng777@...> wrote: I have a cousin with aspergers and a son with autism comparing them is like comparing apples and oranges,I would never put them in the same group. F> > >> > > I don't agree, Lenny. The neurodiverse have an opinion too. THEY> > > HAVE AUTISM. > > > > They DO NOT HAVE AUTISM. They have a disorder, if at all, on the> > autism spectrum, most likely Asperger Syndrome. Aspergers is not> > autism, it is Aspergers. It has been given a different label because> > it is significantly different than core autism. > > > > The Neurodiverse are a hate group. They demonize parents who seek> > treatment and cures for bonefide autism, the disability. There is no> > parent group anywhere who wants to force inhuman treatments on

their> > kids as their straw man propaganda spouts -- although certainly might> > be individuals who do. They also want to redefine autism as something> > high functioning primarily. They act as if autism the disability does> > not exist. They promote their agenda at the expense of children like> > mine, and adults, who are disabled and are in need of treatment and> > cure, if possible. It is immoral to deny cures to the disabled.> > > > > > > They have a disability too, > > > > Aspergers is not a disability. Disability has a specific meaning. It> > does not mean having high functioning disadvantages. It means that> > without profound intervention and care, the individual will likely> > perish. Only a small handful of HF advocates require that their> > advocacy feeds off the disabled like the

NDs do. > > > > > > > and like it or not, they have a voice,> > > they have opinions, and they want to be heard just like you.> > > > > > > You won't find me repeating their bilge in my publications. These> > people do not represent the disabled and they do not even represent> > those on the high end of the autism spectrum, imo. However, there are> > HF advocates that do not need to operate from an agenda of hating> > parent groups who seek treatments and cures. I do what I can to> > support and promote their efforts.> > > > Lenny> >> Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

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May 25, 2007

Re: You Tube Video Blasts Autism Speaks

Posted by: " Nanstiel " erik@...

quantumerik

Thu May 24, 2007 1:49 pm (PST)

I hate the pharmaceutical executives who are fighting

us...

Does that make me a misanthopharmicist?

No, that makes you a Paladin

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May 25, 2007

Schadenfreude = bad karma.... Tess

> >

> > fwiw I don't think they are there to defend pharma, or are paid

by it,

> > to me it feels they are driven solely by very low personal

reasons,

> > things like malice, envy, jealousy... personal misery attenuated

if more

> > people around you are suffering the same fate... schadenfreude

is a nice

> > word here too...

> >

> > Natasa

> >

>

May 25, 2007

I guess there are high functioning aspergers just as there are high

functioning kids with autism,I think it is safe to say most on this

board would not be disappointed if their child was the next Temple

Grandin?

> >

> > I have a 15 year-old son with aspergers and an 11 year-old son

> with autism and I use the same biomedical interventions with both.

> And guess what? It works! Aspergers has its own problems. Just ask

> those who really want to have friends but don't know how. They are

> bully magnets and can't defend themselves or understand why. It can

> be so lonesome and confusing. Then they grow up, get together and

> call themselves neurodiverse and become royal pains in the ass! My

> aspie son can tell the differences from before I started him with

> interventions and now. First with the diet, which gave amazing

> results and then with supplements. He is a lot happier and

> appreciates that he now has friendships and can maintain them. He

> thinks the neurodiverse are a bunch of assholes who are selfish and

> can't see the real world with their ridiculous views. He wants his

> little brother healed too. My older son is fifteen 6'1 " and I still

> can't let him ride public transportation alone because he would

> > get hopelessly lost. He has no abilities to turn in homework or

> remember what he supposed to be doing without a well maintained

> schedule. But he is an amazing artist and very compassionate. My

sons

> are just two different kinds of apples.

> > Kathleen

> >

> > The world is not yet exhausted; let me see something tomorrow

which

> I never saw before.

> > -

> >

>

**********************************************************************

> ***

> >

> > Re: You Tube Video Blasts Autism Speaks

> >

> > I have a cousin with aspergers and a son with autism comparing

them

> > is like comparing apples and oranges,I would never put them in

the

> > same group.

> >

> > F

> >

>

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May 25, 2007

Thank you for your kind response. Both of my sons are amazing people and I am so glad that they are sharing this planet with me! And they are doing wonderfully well with biomedical interventions and my younger son has ABA as well and is recovering. So I am very blessed. I just wanted others to understand that aspergers has its' own pains and frustrations and is very much a part of the autism spectrum. No parent should be made to feel that they have to defend their presence somewhere because their child is not autistic enough. I hope that all of the children become not autistic enough for these boards. When your child hurts from lack of social understanding even though they have language skills, and they want so much to have friends but don't know how, as a parent you hurt as well. I hated that people called my son a little "Data" because of the aspie thing, far from it, he just didn't know what emotion he was expressing or understand

facial and tonal expressions of other people. He does now and people don't find him annoying anymore. That's another thing I would hear, people telling me how annoying they found my son. How rude is that! And very hurtful! That is why the ND's who lurk are never going to be converted without the biomedical interventions. They've felt that hurt for a very long time. I feel sorry for them, but I certainly don't want them hurting families here. And I was surprised that any member would respond so callously to a famliy whose child only has aspergers. My older son had all the autism symptoms with the exception of the language and he actually was diagnosed after his brother because the language thing confused his doctors. Maybe this discussion needed to come up so that parents with aspie kids can also know that they are supported.

Kathleen The world is not yet exhausted; let me see something tomorrow which I never saw before.- *************************************************************************

Re: You Tube Video Blasts Autism Speaks

Kathleen,Thanks for sharing your story. Even with more healing to do with your boys, its wonderful to hear how well things are going for the olderson. I hope his talents will bloom even more.And I hope the younger son does great too.Bless you guys.In EOHarm , Kathleen Anne <child_book_writer@...> wrote:>> I have a 15 year-old son with aspergers and an 11 year-old son with autism and I use the same biomedical interventions with both. And guess what? It works! Aspergers has its own problems. Just ask those who really want to have friends but don't know how. They are bully magnets and can't defend themselves or understand why. It can be so lonesome and confusing. Then they grow up, get together and call themselves neurodiverse and become royal pains in the ass! My aspie son can tell the differences from before I started him with interventions and now. First with

the diet, which gave amazing results and then with supplements. He is a lot happier and appreciates that he now has friendships and can maintain them. He thinks the neurodiverse are a bunch of assholes who are selfish and can't see the real world with their ridiculous views. He wants his little brother healed too. My older son is fifteen 6'1" and I still can't let him ride public transportation alone because he would> get hopelessly lost. He has no abilities to turn in homework or remember what he supposed to be doing without a well maintained schedule. But he is an amazing artist and very compassionate. My sons are just two different kinds of apples. > Kathleen> > > The world is not yet exhausted; let me see something tomorrow which I never saw before.> - > >

*************************************************************************

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May 25, 2007

I believe my daughter wants to be cured also. When I sat down and

explained that the diet would help her feel better and do better in

school, she was very cooperative in giving up her favorite foods and

trying new things. I took that to indicate she is aware there is a

problem.

May 25, 2007

Hi Col,

I would be the last person to say we shouldn't vigorously advocate for

those like your son on the higher end of the spectrum. My point is

that we shouldn't do at the expense of the clinically disabled. I

don't see you arguing that we should downplay or trivialize those most

severely afflicted. This is what the ND bunch does.

Lenny

>

> Lenny,

>

> Hon, I have to respectfully disagree with you on this subject.

>

> I understand what you are saying, but I also think there is a lack

of knowledge when it

> comes to Asperger's. Most attention goes to more severe cases of

autism, and the only

> media coverage goes towards very high functioning aspergers.

>

-snip-

May 25, 2007

People don't see them as "disabled". They see them as odd. They are usually brilliantly intelligent and can somewhat hold a conversation. They fool many, often times including themselves. My son knows he's different. In his words? "When God wires you smart, he wires you weird." He has found a comfort zone in a career he will enjoy and friends that love and accept him for who he is and who he is NOT. Just because a disability is not blatant does not mean it's not there. Sophyaschaferatsprynet <schafer@...> wrote: Hi Col,I would be the last person to say we shouldn't vigorously advocate forthose like your son on the higher end of the spectrum. My point isthat we shouldn't do at the expense of the clinically disabled. Idon't see you arguing that we should downplay or trivialize those mostseverely afflicted. This is what the ND bunch does.Lenny>> Lenny,> > Hon, I have to respectfully disagree with you on this subject. > > I understand what you are saying, but I also think there is a lackof knowledge when it > comes to Asperger's. Most attention goes to more severe cases ofautism, and the only > media coverage goes towards very high functioning

aspergers.> -snip-

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May 25, 2007

Sophia (LOL) you're right. I just defended a woman with Asperger's in

my town when the store where she worked wanted to fire her for talking

too much to customers. I gave the manager an earful about what

Asperger's entailed. He is NOT firing her. Got a call two weeks ago

from a Grandma midcounty whose grandson, Aspergers fell apart after

graduating from high school - tried to navigate college and failed

miserably and is now in a deep depression. I tried to hook her up with

a number of sources to help the young man. Got a call today from a

friend in Ohio who watched a grocery clerk BERATE a bagger-boy for

his " non-stop talking " and guess what diagnosis the boy probably

has..... It's going to get worse unless we educate the world that

these folks exist and need our help and support, AND when possible,

biomedical interventions where they can be of help. Elder

Robison's book, LOOK ME IN THE EYE, will go a LONG way to creating the

discussions about the Asperger's/HFA group. And in a postive way. ---

In EOHarm , Sophia <sophya_lauren@...> wrote:

>

> People don't see them as " disabled " . They see them as odd.

May 25, 2007

I must be missing something in the ongoing discussion of "You Tube Video blasts Autism Speaks". So, I went back and reviewed the "video" and found myself as perplexed over the debate as ever. The video can be viewed at:

http://www.youtube.com/watch?v=46LYd4Xe63Y

Apparently, the you-tube video producers believe the "inspiration" for Ms. Thierry's "Autism Everyday" film came from the (Feb 2006) emotional, uplifting, encouraging performance of Jayson McElwain, a young autistic man who entered his high school basketball game and proceeded to score 7 of 13 three point shots, totaling 20 points. There is no doubt that Jayson's performance was "inspiring", so much so, he was invited to the White House to meet President Bush, appear on Oprah and have Magic offer to co-produce a film on his life-story.

In any event, the you-tube video seeks to characterize Thierry's "Autism Everyday" production as an unrealistic, unwarranted "stigmatization" of autistic children because the film portrays families who are shown having a difficult time raising their autistic child.

Feel free to correct me, but, my recollection of events is different. I first viewed Ms. Thierry's "Autism Everyday" production on the Don Imus Show. At that time, I had never heard of Jayson McElwain. Instead, I sat riveted as Ms. Thierry's production realistically portrayed the life and struggles my own family was enduring everyday while raising our autistic child.

So, I am hard-pressed to see how Jayson's remarkable - once in a lifetime experience -provided the "inspiration" for a film titled "Autism Everyday"?

The rest of the you-tube video is simply an unnecessarily cruel, personal attack, on Ms. Thierry's integrity as a film producer.

Consider the "music" that accompanied the "fact" that Ms. Thierry requested the moms she was about to film not have their "hair done" or "vacuum" that day. It was so "dramatic", it was absurd.

Would you-tube producers prefer Ms. Thierry realistically portrayed "Autism Everyday" moms as having the energy and time to have their "hair and vacuuming done" everyday? Maybe in their "family", but, not in ours.

Ms. Thierry was "proud" that Ms. Singer stated there were times she felt she could "murder" her autistic child". "Proud"? There was no other adjective that would accurately describe the "reality" that some moms have resorted to such tragic means? How about "horrified"?

Ms. Thierry is criticized for having portrayed families with autism as they live their "daily" lives? Well, my son and his lovely wife are exactly like those portrayed by Ms. Thierry. Is my son and his lovely wife guilty of "eliciting pity and hopelessness" because the likelihood their son will ever greet the president, Oprah or Magic is just about "hopeless"? Jeepers, my son would settle today for potty training and an occasional spoken "mom or dad".

You-tube video suggests "Autism Everyday" cameras and crews entered "small apartments and houses", proceeding to follow and sometimes chase children around the house to illicit a reaction. Trust me, no one has to "follow and chase" my grandson around his house to "elicit a reaction". He "reacts" all day long. He requires no "elicitation" by anyone.

The closing snippets of "Autism Everyday" scenes were accompanied by an incessant chant, "kick them when they're up, kick them when they're down". Apparently, the "lyrics" were meant to suggest the parents shown on "Autism Everyday", which were exact composites of my own family, are "kicking" our kids "when they are up, or kicking them when they're down".

Yeah, right, Thierry is guilty of "stigmatizing" autistic kids, but you-tube producers see no problem in "stigmatizing" every parent who was shown in that "Autism Everyday" production coping with the "reality" of caring for their child.

Not surprisingly, the you-tube video ends with the disclaimer "The only ones who seem satisfied with this (Autism Everyday) manufactured film are the super rich Town and Country set on the Autism Speaks board. Well, I am not "super rich Town and Country". I am "Joe six pack grandpa" and I thought "Autism Everyday" an excellent representation of my family's life.

All in all, this you-tube video is a vicious, unwarranted attack on Thierry and those parents that understood and related her production of "Autism Everyday".See what's free at AOL.com.

May 25, 2007