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Dachel Media Review: Working, Autism Speaks Boycott

Online newsBy Anne Dachel

Read Anne's commentary and view the links after the jump.

Jan 31, 2014, Philly.com: A Challenge at Work Might Ease Autism Symptoms in Adults

Jan 31, 2014, AP Magazine: Autism Parenting Magazine has officially joined the Boycott of the Autism Speaks Charity

Philly.com

For adults with autism, having the chance to work somewhat independently may lead to a reduction in symptoms of the disorder, a new study suggests.

The research puts new emphasis on the potential for adults with autism to develop and improve over their lifetimes, said study author Julie Lounds Taylor, an assistant professor of pediatrics at Vanderbilt University, in Nashville.

"We have assumed it's really hard to budge autism symptoms in adulthood. Drugs are targeted to problems like acting out, for example," she said. "But this study suggests that these adults need a place where they're intellectually stimulated, and then we'll see a reduction in symptoms."

The challenge is to find the right fit between a person's abilities and interests and a specific job, she explained.

"How independent can they be and what are the risks of failure? We have to be careful. You're talking about a huge range of people with autism," Taylor said. "I've seen people who can manage pretty high-level jobs, like computer programming or being in the military, while others have more [mental] challenges, but can still work a job in the community with support.". . .

About 50 percent of adults with autism spend their time in sheltered settings, and a minority work in the community, according to Taylor. Most have trouble holding steady jobs, she added.

I'm not able to post on this site, it seems, or I'd ask why no one has studied elderly or middle aged adults to see how they manage.

The message here is: autistic people just need help getting a job.  Things will work out fine for these kids.

Now that we're seeing the autism generation entering adulthood, we have to pretend that they've always been here. Good luck with that one.

AP Magazine

In the latest issue of the magazine, Editor - Leslie Burby described the reasons that Autism Parenting Magazine would be joining the growing boycott against the Autism Speaks charity and its sponsors.

The Boycott was started after hearing Autism Speaks' co founder Suzanne Wright's Call to Action Speech to Washington D.C. in November 2013. Members of the autism community are tired of Autism Speaks' creating a culture where Autistic people are oppressed and marginalized.

After previous attempts to get Autism Speaks to make changes failed, autistic adults and parents of autistic children have successfully collaborated on a project. In a joint letter to the sponsors of Autism Speaks, several organizations have asked major retailers to withdraw their support

Leslie Burby is the mother of two children with autism and she's the founder and editor of Autism Parenting Magazine. On the video she lists how Autism Speaks uses their funds: how much goes to salaries, $18 million, how much goes to research, $15 million, how much goes to help families, just over $2 million.

Burby is angry that AS isn't really helping families. She's also resentful of their negative comments about autism. Autism Speaks has called autism a burden for families and Burby doesn't agree. She doesn't see autism as an illness. Her magazine is joining other autism advocacy groups calling for a boycott of businesses that support Autism Speaks.

The one similarity between AP Magazine and Autism Speaks is that neither of them is demanding that we stop the epidemic. Yes, we need awareness and early diagnosing and lots of services, but we also have to admit that something new is dramatically impacting the health of our children. We have to PREVENT AUTISM. Calls for a boycott of businesses that support AS is like rearranging the deck chairs as the Titanic is sinking.

Comments

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I am the mother of a high functioning autistic child. I also have the exclusive "priviledge" of observation on a 24/7 basis, as I am wheelchair bound due to MS.
This has afforded me the ability to observe uninterrupted for 2 solid years, both which my child missed a considerable amount of school.
In short, your "theory" of illness is debunked.
MS is an illness, a disease, one we hope for a cure for.
Autism is a disorder. However, is it? Is it not the human brain that has advanced in some instances to weed out all the "static" and get to the point quicker.
A nonverbal person is not a tragedy in every case. I believe that to cure you would consider a disease and it simply does not belong in that category.
Autistic people learn differently and some have sensory issues that interrupt the learning process.
Now, with that said, in my own observation I knew what worked (I have my own sensory issues), I did not however understand why. Close work with a behavior consultant gave me the why's
Autism Speaks needs to listen to autistic adults who can give the why's
Vaccinations is a theory that people hold to have someone to blame. My son (NT) had all the same shots too.
Finally, I'll say this..remember analog or rotary, now digital and pushbutton. We have advanced in our mental makeup and sometimes wires get crossed. I believe in utero, some developemental issues arise and children end up extreme autistic...then we have our geniuses who design, invent, create and discover things like apple and pc and iphone and symphonies, artwork, scientists who solve riddles of humanity.
Are we really ready to "cure" autism
This is why people want to boycott. They are trying to minimize their existense and it is being met with resistance. Dont wipe out what we cant control...work on a "cure" for cancer!

the DSM may be stupid but you, Linda, don't get to put down people like me because i have aspergers.

Hey C,
You know what's really amazing? That you can have a Phd and not realize that it was made clear over and over and over again in this conversation that we weren't talking about the kind of autism that you have. Abundantly clear. Talk about narcissism. I am glad that you and your son are doing so well. For you, since you are so happy and successful, I wouldn't suggest changing a thing (not that it's up to me or anyone else what you do), but I wish you would be able to have some compassion for those whose autism makes it hard for them to get through elementary school.

C;
I will pass it along to my son that since he has autism that he is underpaid and under employed.
Thanks.
And here I was thinking he was real lucky to have this job with no benefits.

Nate doesn't need anyone to advocate for him. Neither do Temple Grandin and Vernon Smith, who only won a Nobel Prize in Economics. He attributes his success, in part, to autism. Albert. Einstein showed strong signs of autism. As for me, I'm autistic with a Phd in Economics, a family and a high-paying job. I'm also hyperlexic and have other strengths that autism has conferred on me. My son is autistic and there's no doubt that he will go to college and may even get a Phd. Are our very existences catastrophes? You can't have the strengths of autism without the personality. They are inseparable.

Maybe the real problem people have with us is that we don't share their perfection. Those narcissists can go to Hell. We're all different and imperfect. Tolerance is essential to democracy. If you have too much narcissism, you can grow up to be a Hitler or Saddam.

To Nate and the other kind folks who have come in to talk about their POV RE neurodiveristy - we thank you for sharing your thoughts. We're going to close the conversation at this point as we are seeing the same thing over and over - and to be honest with you - for so many of us - while we respect you, we honor your as people with autism, and we by NO means wish to impose any treatment or care on you - we do have children whose needs are very different and for whom life is quite literally dangerous because of their autism. I ask you to respect our perspective here at Age of Autism - we are not a publication with a neurodiversity perspective - although - as I have said - we respect you and your opinions. Thanks very much. Kim Stagliano - Managing Editor and Mom to three beautiful young women with severe autism who can not comment on sites - and whom I love more than life itself.

Autism should not be cured. Its a part of us. I dont see it as an illness i see it as a talent.

Cia Parker, I think you could be right about neurodiversity groups being given money and encouraged by pharma.
They can't have it both ways- say that they are sympathetic to those who are profoundly affected by autism to the point of having moderate to severe cognitive functioning deficits and say that they need more services, and yet hesitate to call this a crisis.
LOL, a vaccine cure for autism.

we can be self-centered sometimes, just like everyone else, but Cia, you're painting it like we're evil or something.

excuse me? i keep telling you autism is more than non verbalness, and helping her to talk is not curing or overcoming autism, just helping. we teach NT kids to talk all the time and yet we don't consider that curing. why us?

Autism Speaks says we have to be cured, so if we're against a cure, we can't join Speaks

just curing autism would take away some of the downs but replace them with new downs, so there would be no change at all, and as many of you NT curists think you're so better, you're not in so many ways you couldn't imagine.

i think you'll find that if american law someday requires that people take an vaccine that prevents autism, that a lot of already autistic people or some NTs will flee the country and/or go to jail and it will be worth it.

Jen,
Have you read Callous Disregard? Wakefield gives a short history of all the Lancet children. All were developing normally before the MMR. There was one girl born with a heart condition who was developmentally delayed, but after heart surgery she made up for lost time and was found by a doctor to be in the developmentally normal range until she got the MMR, which, of course, caused autism and bowel disease in her. Those who say otherwise are just pawns or shills just mouthing pharma lies.

Mat p,
We do know where autism comes from. Read The Age of Autism (book and blog), Evidence of Harm, Vaccine Epidemic. Look at regardingcaroline.com for many, many interesting links to articles and studies showing how autism is caused. And NONE of us believes that there will ever be a vaccine to cure autism, as vaccines can only damage the brain, never heal it.

I recognized one of the names here as someone who is a professional defender of vaccines and "neurodiversity." I have a feeling that the vaccine industry supports some of these groups as "front groups" like Shot of Prevention and Voices for Vaccines, to promote the pharma party line. I think Big Pharma is trying very hard to promote this idea of autism as an interesting and unique "difference" that has always been around, and should be accepted, that the only problem is that awareness must be raised. Of course those of us with autistic children damaged by vaccines recognize this as hogwash, but it may be that BP finds it worth their time and money to work on the NT adults who may find this believable. And then these NT adults find an excuse to just put out of their minds the earth-shattering truth being screamed about by the affected. It's so much more comfortable to believe that I'm OK, you're OK, free to be you and me, be sure to get all the vaccines recommended by your kindly doctor who only has the best interests of your child and all the world's children at heart to prevent diseases which can occasionally be deadly for anyone, more often deadly for the immunocompromised or malnourished, an excuse to make a hands across the world ploy, vax your child to protect the starving children in Africa. Everyone break out in a chorus of We are the world, we are the children, we are the ones who want a brighter day, so let's keep vaxing!
But sending a scout party out to attack Age of Autism is counter-productive, as we have the truth on our side, and, as in every blog battle, ít just gives us another chance to gain adherents.

Roger,
And beyond what you said, yes, Temple Grandin supports herself by the work she has done for many years. Of course we would all love for our children to reach that point. But I don't think she is admirable. I don't think that having figured out how to fool cattle into a mistaken belief that they are safe as they walk to their slaughter is an admirable accomplishment. (Spoken by a vegetarian and longtime PETA activist.) My daughter's autism teacher last week said that he had seen interviews with her and read a lot that was written by and about her, and said, when I said what I just did, that she was considered "crass" in many circles, unkind, inconsiderate, and rude. All autistic people, including me, need to work constantly to overcome our self-centeredness. Some are more successful at doing so than others, but it is harder for us because that area of our brain was damaged. Not exonerated from the duty to make the effort, only God can judge what we must do and how well we do it. Full recovery would take a lifetime of unrelenting effort, and even reaching Grandin's state of recovery would not denote such success.

Nate,
Autistics are only better off than starving people in Afghanistan or elsewhere because competent people take care of them and give them everything they have. Big deal. Does that show that autistic adults just LOVE their inability to be independent and take care of themselves? Cecily is ALWAYS telling me (in three-word sentences at this point) that she's independent already, living by herself already, earning her keep already. It's not true on any point, of course, but shows how much she wants to eventually become an independent adult.
And why should I care if autistics are reading my words? If they are competent enough to get to this site and read what I write, they are presumably competent enough to give thanks to God that they are verbal enough to do so, and feel great compassion for those who can't. Are you so brain-damaged by vaccines that you can't even conceive of the tragedy of being non-verbal? You said autism is more than being non-verbal. Meaning? Did you mean constantly screaming and lashing out from chronic GI pain? Beating your head on the wall trying to quell the pain from encephalitis? Going on for half an hour at a time on the phone detailing the size of all the different planets, their temperature, the number and names of their moons, and the composition of their gases, the way my Asperger's nephew used to? Sitting in a corner bewildered, bored, and lonely when other children are laughing, playing, and talking together? Autism is a tragic condition. There is no aspect of autism that is a gift unique to the autistic. If you think there is, I hope you will share it with us.

Nate,
As I said before, although I wish I were, I am not NT, but rather have Asperger's. That might explain why I am as perseverative as you are. Let's have you walk in an autistic person's shoes now. I've been instructing Cecily in ESL since October. I started out using the first book in the Cambridge Interchange (when I discovered Connect for middle-schoolers I switched to those for the time being). In one of the first lessons, we studied the construction Where is (are) the... It's (They're) in front of, next to, under, in, on... the... She found my purse, and, when I asked her Where did you find my purse? For the first time in her life she said I found it (pause for several seconds as she tried to recall the prepositional phrase) IN THE GARAGE! Proud and happy to have been able to form a complete, informative, communicative sentence! At that time we also went over the vocab and phrase list for that lesson at the back of the book, it had "over there," and I realized that she had never said "over there." I pointed at the TV, saying The TV is over there. We haven't done anything with that since October, but yesterday at the supermarket, I was looking for the aisle with toilet paper, and was starting to go the wrong way. Cecily pushed the cart a different way, and I was starting to snap at her when she said "It's over there!" I was startled, it was the first time she had ever said it, she said it appropriately, helpfully, triumphantly, and she was right. If she hadn't said it I would have continued on my befuddled way.

So, Nate, do you think she would be happier just left in her language-less condition? She is learning, but it's like with ABA, she simply can't absorb language from hearing or reading it in context, because HER BRAIN WAS DAMAGED BY THE VACCINES! She CAN, however, learn it if it's modeled piece by piece, doing workbook exercises, DVD exercises on the computer, writing original paragraphs using it. It's a CRIME, that this isn't standard practice in language therapy for the autistic, probably because if the authorities had to admit that ESL techniques had to be used because autism is brain damage, then the cat would be out of the bag when all the parents in the dark up to that point asked But what ever could have caused this severe brain damage? What Cecily's gotten the last seven years in public school has been like whole language reading instruction opposed to phonics, and it hasn't done any good at all, she can't use complete sentences because she just doesn't have the constructs in her mind.

So, is it better to accept and celebrate her muteness, or help her to overcome it? I hope that it will eventually permit her to start to use language to think to herself, maybe start to mature intellectually once the language permits her to progress. How do you celebrate muteness? blindness? deafness? paraplegia? Have a cake with candles every Sunday with everyone around the table affirming We LOVE it that you can't walk around the block or even get up out of bed! No problem at all, certainly not a burden, to have to use an uncomfortable, thousand-pound lift to get you into the wheechair. What a gift, what a blessing! Don't even THINK about wanting to change this precious component of who you are!

As a person on the spectrum I totally dislike how ASpeaks operates and how they treat autism as a "disease" that needs to be eradicated-I know there are differing degrees and levels of autism but a human being is still a human being and has rights and has a right to be always and to hear people try to reduce that right to be and equate it with being a burden and a persons right to be and justify it monetarily-the other thing that truly bothers me is how they re trying to diagnose autism earlier and earlier even to the point of diagnosing it in the womb so they can give the option to the parents of "terminating" a child that they have no idea how the child is going to develop unit the child is born,this disturbs me-everyone has a place in this world. I have been called many names and bullied in school and treated badly throughout my life because I am on the spectrum and I see how NT people operate and treat each other and see some smile right to your face while stabbing you in the back and afterwards go home and sleep peacefully at night and not even think twice about hurting someone-I do not have that ability and why would I want that-not all NT people are like that-I am not painting a group with a wide brush-it seems the people I have interacted with seem to see something in me that makes them feel they can mistreat or take advantage of me-the world would be a better place if instead of trying to tell each other what is wrong with each other we try and understand each other better and I understand times are tough and people tend to focus more on money ,possessions ,not enough time to do what they need or want to do but we need to understand others better.

Roger,
I agree with most of what you said. However, I think "epigenetics" in the sense that some people have always had genes which have always caused them to get autism, MS, etc., is mistaken. Have you read the books The Age of Autism? Evidence of Harm? Vaccines Epidemic? Autism is a condition new since the Industrial Revolution and smallpox vaccine (to make clear that autism is often but not always caused by mercury, but can also be caused by vaccine encephalitis). The medicrats who do not agree that these are the cause and only cause of autism have a vested, or overt, interest in protecting the vaccine industry, as the facts are so clear. Vaccines can damage and alter DNA, which means that vaccine-damaged people can sometimes have babies whose damaged DNA was inherited from them. You are right, not much has been done on this, and obviously BP would never touch it with a ten-foot pole. However, those living outside the ambit of heavy-metal toxicity and vaccines (like most Amish) NEVER get autism, and rarely get any of the many conditions caused by vaccine encephalitis or autoimmune reactions to vaccines.
I have MS from a vaccine reaction and a fever which potentiated the brain damage from stored mercury. My daughter has autism from reactions to the hep-B vax at birth which caused four days and nights of encephalitic screaming, and the DTaP at 18 months immediately erased her only two words. She also had symptoms of mercury poisoning for her first ten years. I was perfectly healthy between my encephalitic reaction to the first DPT at three months and the tetanus shot at 19 that paralyzed both my arms the same day. My daughter had no period of normal development that I could see since they gave her the hep-B shot without permission at midnight the day she was born and she reacted to it for four days in her first week. But there is no reason to believe that encephalitic screaming for that long had no effect on her subsequent autism, and every reason to believe that it did.
I am glad that you have recovered. Normal functioning of the brain is a wonderful high, making life smooth and pleasurable. Like me when I wear a contact lens, the whole world seems so bright, clear, and beautiful, that it amazes me that typical people are not in a state of joy every minute of their lives to be surrounded by such beauty. I've never been able to wear more than one contact, from corneal scarring in the right eye. Now I can't wear the left one either: the optometrist said last year that the scarring in the left eye was pretty bad now, and it was causing infections when I tried to tough it out with the left contact. I asked her what could have caused it, and she asked if I had an autoimmune disease. I said yes, MS, and she said the inflammation from MS could cause the scarring. Another crime to be laid at the feet of vaccines. Now I'm permanently locked into fuzzy vision even with new glasses.

Mr Roger Kulp is a gentleman with high functioning autism.

He has made several choices for himself.

Does the neurodiverse community support his right to make a choice ( even if it is different one from the choice they themselves have made) or is the only "choice" he is allowed to make according to you, that he is NOT allowed to have, or want, a cure?
Does he really have any rights to a choice according to you?

I 'll support any one who can communicate what their wishes are , the right to decide for themselves, whatever they decide. And when a person is completely unable to communicate ( see the video in the previous comment) I support that persons right to have the ability to communicate for himself( ie; a cure, at least for his current inability to speak, or type, or communicate his wishes in any way.)

By the way, my choice for my own face blindness is "I want a cure". Am I allowed to want that, or am I not allowed a choice?

Keaton Bicknell; not all people with autism are high functioning. A couple of posts earlier I linked to a brief youtube video. Please let me know your thoughts on that particular individual with autism.

John Makin,: a lot of your points make sense. Thank you. I'm glad you support help for those who are vaccine injured.

Oh, there are vaccines for autism alright!

the use of an techniques to design primarily to increase confidence and self belief, these are coherently present when a autistic student enters the world of work, this is due to the behavior of the way that businessmen work and with a certain amount of encouragement students gain confidence, also the formal behavior of the workplace is consistent and repetitive both these things allow the student to feel comforted thus work becomes part of their focus and obsession, it makes logical sense (Asperger, 1943)

the prevention of autism is a mute point community wise use of a vaccine or cure for autism will do nothing to support them additionally they may never be found a vaccine for autism, we don't even know where autism comes from or how indigenously was created, there is no academic consensus on whether vaccines are truly one of the sources for autism)

If this debate is to move forward in a professional manner when something is actually done for once the needs to be done with a professional attitude not with fire and bluster. and please reference your documents.

do you have additional references?

Dear Roger:

You already lost the draw by comparing autistic people to brain-damaged individuals.


Ladies, Gentlemen, a moment of your time, if you please.

When one boils it down, there are only a few issues here but the interesting thing is that most of you are arguing on the same side, while not accepting what the others say!

Allow me to try and summarize.

A crisis has arisen concerning Autism, its prevalence and its impact. It matters not whether one says that it is Autism that is the crisis or the lack of support given to those affected.

Autism affects the ability to communicate. It can also very severely affect the sensory input of individuals. And there is evidence that it is this effect that can so overwhelm some that it becomes a barrier they can't break.

This also means that it will be extremely difficult to measure the IQ of many affected and will prevent them being able to care for themselves.

There is also little doubt that for the large number, probably the vast majority, that the cause is genetic because it results in a different proportion of white cells in the brain. This excess connective tissue can cause a plethora of different scenarios depending on where that tissue is.

On the one hand we undoubtedly see it in the extra sensitivity shown, in the problem solving abilities, the savant syndrome, those like Temple Grandin who think visually, or those with remarkable memories while on the other hand it can cause the inability to communicate up to those who seem unable to do anything, but still might have the intelligence of a genius locked inside.

What other explanation is there for the well documented cases for example, Carly Fleischman who have a complete vocabulary and the ability to spell when that barrier is finally broken.

It is indeed a tragedy for those who are locked inside such a seemingly impregnable prison.

There is also a wealth of evidence that the responses to external stimuli or damage from external sources causes some cases that are very like Autism, but which can with the right treatment be seen to be cured.
I believe Roger that you are an example of this.

It is also a reasonable conclusion that vaccines may cause a bad reaction. Now while some will say that it is a small price to pay for the millions saved from those diseases that is neither help nor relief for those affected by such a devastating result.

Calls for a cure or prevention from these cases is not only understandable but should be a real priority for researchers.

Let me say that rather than arguing we should all be pulling together looking for three very important outcomes:
1. An immediate improvement in the services and support provided for the suffering caused.
2. Urgent and well funded research into the vaccine side effects and other environmental causes of Autism-like infections. (Which is still lumped together under Autism by the medical profession because they diagnose by symptom not cause, nor prognosis).
3. Acceptance that for those whose brain has developed differently cannot be 'cured' but need the stigma of being labelled diseased removed.

That together with the closure of Autumn speaks which although created in good faith has been taken over by greedy individuals who spend vastly more on their own salaries than on supporting those they raise money for!

well, Linda, you're pretending to hear us and then set us up like bowling pins to knock us down by saying we're sick. you may never have talked to anyone else on the spectrum other than me.

Vaccines have no link to autism. This has been disputed. And wanting to cure your children or wanting to eradicate autism is taking part of them away. People who advocate neuro diversity are not out of touch, people who say that are. And spectrumite has nothing to do with racism. Get your facts straight and stop judging people on the spectrum. We are the ones who put up with these outdated views day after day, on top of living with this disorder.

Linda, Roger, how dare you try to minimalize high functioning people. you shouldn't be very surprised that you have a lot of people against you right now.

Nate: I think everyone should have choices. And to be able to make choices and have other people understand what you want to happen, you need to be able to communicate.
This young man;
http://www.youtube.com/watch?v=yF6nPZg0UhQ
what kinds of choices do you believe he is able to make for his world at the moment?
You might want to look at the very end and see how he communicates that he is thirsty to get some idea of his life right now.
Does he deserve so much better than this? You bet. Its for kids and adults like this that I pray for that somehow God has a miracle waiting for them.
If you had a choice to wave a magic wand and give this young man the ability to communicate, would you do it? I would .Because he deserves to have a voice too.
Until he gets his miracle, I'll just pray that all the people around him are kind and loving and bring happiness into his life in as many ways as possible.

William creativity is coming through some times - some times - in spite of autism not because of it.

Albert Einstein - no one wanted him marrying their sister if what I heard.

Nate and others who agree with him,

I'm just trying to understand where you're coming from and it really is very sad and frightening to me that you seem to feel persecuted and are defensive and you think that people who don't have autism are your problem, not autism. Very frightening to find out that there is a club of people, maybe a large club, who thinks I'm their enemy. That couldn't be farther from the truth. Not only that, but they think they're superior and want to be separate from the rest of society.

If people here didn't care about you and want to hear your point of view and respect your right to make your own choices, your comments wouldn't have gotten through moderation.


Paraphrasing from someone boycotting:
"Autism is not a crisis but the environmental lack of support is."
Well I agree there needs to be more support but if we never call this a crisis or at least the rate of autism a crisis then how on earth will we be propelled to care much about it at all or think we need to allocate more resources to it??

Wow.What a discussion this thread has turned out to be.Nate,I'm sorry.The members of ASAN and I are from completely different worlds.I think the kind of people who post at Wrong Planet probably represent a good cross section of what ASAN is like.Most are very high functioning.They are able to live independently without the complicated regime of diet and medication.None that I have seen live with parents,have lots of regressions,or very complex medical problems.

Years ago,I was banned from Wrong Planet.I was naïve and new to all this.I knew nothing about the nuances of the spectrum,and certainly nothing about neurodiversity.I posted a complete history,with all my sicknesss and regressions.I was trying to find out if there were other people like me.It took me years to find out how rare a case like mine is.In eight years of spending too much time in discussion groups,comment threads like this,and message boards,I have only found case like mine.This is the son of the woman who started the Cerebral Folate Deficiency Facebook group.But back to Wrong Planet.My post freaked a lot of people out.It made them very angry.I was accused of making up a phony story,to scare them into wanting to cure autism.So I was banned.This was what helped teach me that there people who have a very limited picture of what autism is,based only on themselves and their friends.Anything different frightens them.Like a religious cult,neurodiversity tries to recruit and brainwash more severely disabled autistics,so the neurodiversity believers can feel comfortable around them.Neurodiversity uses the intellectually disabled who fall for them as tools to promote their agenda.Pure and simple.

Neurodiversity people have no idea what joy and freedom there is in being free of autism,even if it involves being on a strict diet,and lots of medication the rest of your life.Being free of autism doesn't take away what you are as a person.It makes everything good that you are a million times better.Being free of autism,being able to strike up conversations with strangers on the bus,and make new friends,to have people like you,and not think your weird.Being able to think clearly without metabolic or immune caused cognitive problems.Not having a seizure,and blacking out and wandering into traffic,or picking up a big book or something,and banging your head with it.Being aware of your personal hygeine.All this and more,brings such an incredible joy.I am still in awe of it,and the world a year and a half after being autism free.No way would I ever go off my meds,start eating dairy again,and go back to being autistic.

While there is much I find to disagree with about the vaccine safety movement,I would side with them over neurodiversity any day of the week.Unlike neurodiversity,they recognize that autism can be part of a much larger picture of a serious medical condition,they understand regressions,and believe recovery is possible.I do think they could do more to investigate things like epigenetics.The idea that toxic exposures your grandparents,great grandparents,etc were exposed to can cause genetic or DNA changes,that might not show up as problems until a couple generations down the line.Epigenetics has shown to play a big part in diseases like MS,that shows up in a lot of autism families.I think epigenetics plays a big role in the staggering increase in autism with intellectual disability in the last 25 years.

Yes,in some forms of cerebral folate deficiency syndrome,there is quite a family history of things like miscarriages,NTDs,stroke,autism,mental health problems,and pernicious anemia.It has been mentioned in a number of articles,like this one by Dr.Frye.

http://www.nature.com/mp/journal/v18/n3/full/mp2011175a.html

Nate,
One unfortunate characteristic that defines autism at every end of the spectrum is self-centeredness. Even after a lot of people have pointed out that you can communicate verbally, but that most autistic people can't, and that it is a big problem for them which should be solved if it can be, you still sound as though you were saying that no matter how impaired, frustrated, lonely the autist may be, he should be accepted and celebrated, his inability to communicate and relate to others being accepted as an endearing "difference." I've been explaining to people since I realized it that my daughter's brain was damaged by vaccines, damaging the language and social center so that they do not give the automatic support and ability to easily assimilate language structures and social practices the way an undamaged brain does. Temple Grandin said that she grew up thinking in pictures, not words. I'm sure that my daughter is the same way, and is developmentally delayed because a mature brain and reasoning depend on slowly building the adult human mind using not just words, but the concepts words allow us to understand, think, and build structures with. Without the help of a healthy brain, people like my daughter are condemned to perpetual infancy, because without language we are extremely limited in our ability to even think. Are you against people who have been brain-damaged by a stroke receiving therapy to help them learn to speak and walk again? Are you saying that they're just fine the way they are, struggling inchoately, futilely, to pull up the words that now evade them? Unable to participate in the give-and-take of human commerce all around them. You think we should just leave them to lie in their isolation and pain without attempting to help them?
You are insensitive, unkind, self-centered. Next to the burn victim being pulled from a conflagration, you hold up your finger and say Look at me! Look at me! I'm burned too! Aren't I the same as the guy whose whole body is charred, struggling to painfully breathe. HE doesn't want or need your pity or concern. I don't, so I KNOW he doesn't either.

so you think people have no choices when they're autistic?

Nate ; it seems that what you are saying is that the person with the most severe autism that you have ever met is able to write pages of beautiful prose.
Apparently you've never met anyone who was actually unable to communicate, non verbal ( and non typing) with an autism diagnosis?
Perhaps its time to meet someone who actually can't communicate...?
And maybe even for you to provide care for them for a day or two?
I am intrigued about your friend though. Is this someone you "know of' from the web, or have you ever say had her over to stay, or taken care of her in her own home, if she prefers that, for a couple of days?
Or do you visit her but stay away from the actual care giving component and leave that to others? Just interested in what types of actual experiences you have had with her.

Even if all you are is just a visiting friend, there are plenty of us who would love that for our kids, so I am not putting you down for that, just pointing out how limited ( or not ) your experience is with her.

What she wants; her choice and she can express it. But does she ( or you) have the right to take away the chance for those who want a cure to make a different choice?

I'm mild/moderately face blind. ( Am not autistic though, I can read face expressions really well, but find it very hard to identify people by their faces). I do want a "cure" for my face blindness. My life would be so much easier if I could recognize people easily.
I 'd like to believe that I am as entitled to accept a cure for myself, as you are to refuse it for yourself, assuming that you are face blind too.
Its all about increasing choices for each individual.

Parents and caregivers talk about how hard it is to take care of a severely autistic child or adult. I get it. These people need help and support, and if charities did that, it would help greatly. I would like to see that autism parents AS WELL as their children see relief from how their condition affects them. This is not what Autism Speak is about.

I was one of those "classic" autistic children who head banged, bit people, and did not speak. If it were up to Autism Speaks, my condition would be detected in the womb and I would be exterminated long before I was born. The world would have missed out on my talents and books. At least one couple would be out of business had I not be there to help them.

Do you know I'm still autistic? Do you know that I still have many of my autistic behaviors? When I see the little girl who is biting to get away from something, I see myself. When I see the 11 year old boy bash his head as hard as he can against a well, I see myself.

I am autistic myself and I can also see things from a parental point of view, since I also work with autistic children. When I worked with the children I talked about, I can also see that the little girl who will bite to get away from things also be ably to recognize written words that an eight grader will have trouble reading. I can see the same little girl think about how to get into a locked room where there is something she wants. In other autistic children who are severely autistic, I see some capabilities that surpass those of neurotypical children. Most of the children I worked with had various talents and different ways of creating. However, most people who see them will only see the headbanging, screaming, biting, etc.

Albert Einstein was once the biting, nonverbal child that make up so many of the autistic population. Isaac Newton, Wolfgang Mozart, Steve Jobs, and so many other great inventors, artists, musicians, etc. are said to be autistic.

Unfortunately, we are one scientific breakthrough from exterminating over 90% of the forces of creativity that advances humanity. Autism is not all good, but it is not all bad either.

We had something good going at the Center, but it failed to get the help it needed. Some derided us as being a glorified day care center. Even if that is what it was, what is wrong with that? Isn't that part of what is needed to help the parents of autistic children? What is wrong with families of autistic children getting together and providing services for each other. The parents of the autistic child who works during the day can help take care of an autistic child for a parent who works at night and vice versa.

Instead, I see parents and others in the autism community snipe and say hateful things about each other because they cannot agree if it is vaccines or genetics that are causing autism. I see a blame game where people want to point the finger and blame someone or something else rather than work together to find a place for autistic people.

I am also a proponent of boycotting Autism Speaks. I'm sure they have help a few people, but any organization that is working to find a way to screen people so that they can be exterminated before they are even born is not good. Any organization purporting to help people but refuses to allow those affected by their work to have a say in its direction is not a good organization.

i know someone with classic autism, or kanner's as they sometimes call it, that is totally against $peaks. she has a lot of pages about how beautiful it is to be autistic. *cue the curist rage comments that accuse me of convincing her that autism isn't a disease or something stupid*

John Makin;
yes! We are talking about two totally different lifestyles here. High functioning people who are brilliant and nerdy, or even are just able to speak for themselves; (which applies to everyone who was able to use a keyboard to type paragraphs of opinion here): you are independent. You can make your own decisions.. Only job for a parent to do with any independent adult child is to love them, be kind and let them get on with their life in whatever way they choose
You guys are fine. Your life is great. No one wants to cure or change you, and you aren't a burden to anyone.


People who are non verbal as an adult, best their heads against a wall to relieve the pain, scream in agony, and require round the clock care so they don't get injured, the people who will die if left in a hot car because they don't know how to undo the seatbelt; parents need to do for them what anyone would want done for them in that position; advocate to help them. To give them speech . To take away their physical pain. To give the chance to form relationships, have fun, be independent. We are talking "cure" here.

While these people hopefully are deeply loved by their family and caregivers, the reality is that providing life long care to someone who is disabled whether because of non verbal autism, altzheimers, or any other disability that leaves someone relying on other people for 24 hour care, there are stresses, and even good people who love their children ( or parents, if they are caring for an adult with altzheimers) may need support and even a break.

There are some people who hate their kids whether disabled or not, and should never have any. And some people hate their parents and abuse elders in their care. Both things are terrible.

However explaining to someone who has sacrificed to provide the best care they can to someone they love ( maybe left their job so they can stay at home to be a caregiver, given up on vacations, electronic toys etc, because there is just no money to buy them, no rest or break, because there are no alternative carers, maybe visits to the ER from time to time to fix the latest broken nose when the person you love lost it and injured you ( again) ; that these things aren't stressors would be pretty insensitive.

And for anyone who chooses to advocate on behalf of all people with autism, may I request you spend a little time with a non verbal, diaper wearing mentally retarded adult with autism before you argue that no one is ever allowed to get 'cured'.

To be blunt, as John Makin says; your autism is not their autism.

John Makin states:- "Classic Autism develops in the womb as the brain develops giving rise to a different brain constituted differently from the vast majority of the population."

As far as I am aware Mr Makin's assertion is nothing more than a hypothesis. There have been $£billions spent, (or wasted!!) on trying to 'prove' a genetic cause for autism. Although, there may well be a genetic tendency to develop autism in response to environmental 'triggers', no causal genetic link has been proven.

Mr Makin talks about 'classic' autism. Perhaps he would like to enlighten us all about exactly what he means by 'classic' autism, since mainstream scientific and medical opinions regard autism as a 'spectrum', with many different presentations and degrees of seriousness.

There is an obvious difficulty here, typified by two different definitions of what Autism is.

On the one hand there are those, who can point to some specific event, whether it be an illness or treatment for an illness or vaccination. And as we have seen from Roger's contribution it can even be caused by a genetic folate(?) deficiency. All these medical conditions causing symptoms that have been diagnosed as Autism.

On the other hand there are those who have the condition that is well attested to, where the developing foetus builds a greater proportion of white brain cells, connective brain tissue and suffer from excess levels of messaging in the brain. These also have been diagnosed with all the symptoms of Autism.

Now to an average, logical and systematic person such as I it is quite obvious that we are dealing with at least two completely different aetiologies, that may superficially be mistaken one for the other.

Unfortunately those espousing one side, one set of causes and developments, one aetiology are trying to argue their case on the basis of that aetiology, with members of the other side who espouse a different aetiology.

So the first thing that should be agreed is that we are talking about two completely separate issues.

Classic Autism develops in the womb as the brain develops giving rise to a different brain constituted differently from the vast majority of the population.

Other development disorders that are caused by vaccines and so on, are not the same thing and it is time the medical fraternity said so!

It is fine to look for ways to prevent or treat the second class of conditions, but please don't tell those for whom the very way they are built, the way their brain is constructed, that they need to be cured or prevented.

Because we are talking about two completely separate sequences of events, with different outcomes, yet similar symptoms that are, unfortunately given the same label, the two sides will not, indeed cannot ever agree.

Both sides are right in what they say, yet both are wrong from the other's point of view.

Mary Anne,
Did your programming partner occasionally have violent outbursts at work? Did he run through the office naked?

Please read today's AOA post by Mary Conrick, a young girl whose sister has autism: http://www.ageofautism.com/2014/02/mary-conricks-autism-sibling-perspective-pain-and-laughter.html#more

I am in fact fully convinced that my son who will have to be looked after all his life and will never earn a cent is worth more than a politician, scientist, lawyer or doctor. Indeed, from my perspective they can all go to hell providing he is alright. However, it would be wrong to gloss over what strain this can put on people's lives who are under-supported or the almost impossible costs. A recent study assessed the annual cost of autism in the UK at $54b - so what can we do about it? The first thing is to stop deliberately inflicting neurological and other organic damage on people as a matter of public policy, and then turning a blind eye.

I would love my son equally much if he lost a leg but I wouldn't wish him to lose a leg.

"We have to PREVENT AUTISM." expresses a view from a bystander who does not understand any of us but who, in her own way, tries to minimize the suffering that she percieves as the result of our cognitive style or the autistic culture.

She does not realize that most of the suffering is due to the fact that she herself, because of a different cognitive style, lacks cognitive empathy and a matching theory of mind. She's simply as lost in translating our needs from her own perspective, as she would be visiting a very different neurotypical culture on the same planet.

Understand our code, our values, our dopamine triggers - even if we're as diverse among our peers as NTs are among their own - we do share

While I salute her will to help, I strongly prefer to let autistic individuals define their own suffering and the tools we might need to thrive.

http://www.youtube.com/watch?v=-0WjUYimvMA

i have autism it does not make us special how ever some people are scared of some thing that they cant see. why are some people hateful towards us what did we do to you come on people look at what's in front of you

I totally agree with what Nate Watkins has to say about the 'burden' issue.
My main partner in programming for years and years is another very talented person with Asperger's. He did much work in computer animation for Disney and Pixar (movies that every one has seen - he worked on those).
So, is he a burden? Or would the world be less fun and entertaining without his contributions.
AND, BTW - he has NO real comprehension that he even has Asperger's! It's not part of how he thinks. He solely thinks in terms of computers and nothing more. Nothing else exists to him.
And I taught hundreds of students to write programs and design systems. I'm sure many of them were part of what went on with the creation of the Internet and Web and data communications as we now know it. SO, was I a burden? No. If not for me, I wouldn't have been around to teach them and they would not have enabled what we are now using to communicate here!

I am 59 years old - 1/2 Native American and 1/2 Scots-Irish Reservation-born woman who was adopted at age 3 months.
My parents said I was developmentally ahead until I had my DPT vaccine at age 6 months after with I ran a high fever for 5 days, screamed a high-pitched unearthly scream (now known to to be associated with brain damage) for 3 days and the family doctor said he had never seen anything like it and wrote a paper about it.
After that I had coordination problems, problems visually tracking and seemed more interested in moving objects than people.
We are convinced that the DPT vaccination had much to do with it since I have been in contact with my 9 older 1/2-siblings, none of whom have Asperger's or any neurological anomalies.
My I.Q. was tested repeatedly and topped out at 162 in college and I had innate musical and artistic talents along with the ability to memorize entire books and conversations - BUT, I had NO understanding of the conversation. I was nothing more than a tape recorder.
As a child I mostly played with building type toys alone or sat drawing or reading or playing music alone. I tried playing with the other children but just had NO idea how to do it (and still do not).
Even though I have three degrees and taught at Purdue University right after graduation, I had many many difficulties holding jobs and could not fit in to the office atmosphere no matter how hard I tried and was repeatedly fired for things such as 'insubordination'. One boss told me I was 'creepy'.

Now, as I approach being a senior member of society I feel truly lost. All attention is paid to children with autism and adults and older adults with it are completely forgotten. Yet, now are we not only having to deal with the same problems we had all our lives, but additional ones such as job phasing out, retirement, health problems and lost of friends and family due to aging. There are NO programs or guides for us to follow and it is a scary journey to take on our own. It find it daunting and overwhelming.

We do not need NON-autistic people speaking up for us. What we need is guidance and interaction with others on the Autism Spectrum. I feel I have much to offer to younger people with ASD. But there is no place for me to do this. Instead, what I find is people without a clue as to what it is like to live with autism speaking FOR me or AT me and once again, I tune out.

i think some of you guys should watch the movie "neurotypical" that aired on PBS' POV.

roger, what you need is someone like ASAN to try and help you see autism more positively. notice that much of ASAN's leadership is autistic.

Linda,the depth of suffering in the more severe forms of autism,both for the person with the autism,and for their families or caregivers,is one of those things you can not truly understand if you have not experienced it yourself.At the other end of the spectrum,there those who are higher functioning,with few medical comorbidities,but with psychiatric comorbidities,like my sister.Science is finally admitting these people are more prone to suicidal thoughts or to attempt suicide,as my sister did twice.


http://www.aacc.net/2013/07/18/the-growing-concern-of-suicide-and-high-functioning-autism/

http://health.usnews.com/health-news/news/articles/2013/03/21/suicidal-thoughts-more-common-in-kids-with-autism-study

Has ASAN said anything about this?

What do the neurodiverse posting here think of this finding?


Are they saying that when society, discriminates against us by not giving us jobs we do silly things like go shoot up a school and all they have to do is care for a second? Cold heartless and typically NT.

Sorry, Linda, I just read your comment, and it was much the same as mine. Sorry, I didn't mean to plagiarize.

Peter,
That's pharmaspeak about the million of kids saved from death by vaccines for every one damaged by encephalitis. Scroll back and read everything on Age of Autism, and you'll learn that it's been a century since measles and pertussis, smallpox too, became so mild that doctors in the '30s said there would be no point in developing a vaccine for them. I grew up in the '60s before the MMR, and had measles. People in the '50s, '60s, '70s lived long, happy lives and didn't give a thought to all the vaccines they were unable to get because they hadn't been invented yet. Millions of kids? Could you specify as to disease, time, and place? At this time, at least one in five children is severely damaged by vaccines, with encephalitis, seizure disorders, learning and behavioral disabilities, autism, ADHD, asthma, allergies, bowel disease, diabetes, etc. One in five. You'd have to go back a long time to find a time and place where one in five children was killed or disabled by one of the diseases we now vaccinate routinely for. Sorry, that THEY vaccinate for, I don't.

Nate,
I have Asperger's, from a reaction to the DPT at three months old. My friend Liz' favorite story about my Asperger's is when a Brazilian friend went off saying "Todas as americanas sao muito..." and Liz indignantly exclaimed What??? And I calmly turned to her and patiently explained, "Liz, what he said was that all Americans are..." I'm often just a little, or a lot, off kilter in social situations.
I have a daughter who reacted to the hep-B vaccine at birth with encephalitis, and to the DTaP booster with having her only two words erased, diagnosed with autism two months later. I really don't care if you love being autistic, have a great life (not) and leave us alone. My daughter is painfully lonely, she longs to have friends, but can't talk to them. In our English ESL instruction, we're up to her being able to answer appropriately to What is your house like? What facilities does your school have? I was thrilled the other day when I had a friend ask her, and, a month after we had talked about it, she answered, My school has a media center, a cafeteria, two gyms, a weight and aerobics room, and two courtyards. It doesn't have any swimming pool or tennis court. But if the person aske anything completely off-the-wall like What did you do last summer? What country would you like to go to for vacation? then she cannot answer anything at all, and retreats into her favorite stim, cat words: "Har, Harlequin, Fancy Feast, Cat food, Purina, Whiskas, Nine Lives, Friskie's," on and on and on. Her brain was damaged by vaccines, and it has kept her from becoming the woman she was meant to be. If a truck hit your son walking on the sidewalk, sent him into a coma, and when he emerged his brain was damaged and his speech severely affected, would this not be a tragedy? If he needed specialized nursing for the rest of his life, and you did not have the means to pay for it, would the problem not be a burden, no matter how you coped with it? Even if you could pay for it, what a burden to see him every day in his injured condition, and try to call back time to replay that minute! Would you not be angry? Do you find it hard to put yourself in another's place enough to be able to imagine the pain of all the people involved? Are you in denial that you yourself were damaged by vaccines? Does it not seem a matter for regret that your capacity for compassion is so limited?

Nate,
I agree with you that those are terrible things to hear people say. As a person who has autism, it must be especially hard for you to hear them. I'm sorry.

The parent who says, "i want to kill my son sometimes and i love him", is probably crying out for help, that he/she is having trouble coping. As hard as it is to hear, we need to support that person and help them to find ways to cope with their problems, don't you think?

For the second statement, "that parent murdered his/her autistic child because she had no other choice". No one excuses murder. Sometimes we try to understand what causes people to do terrible things, but no one, especially no one here, thinks it's ok. The parents here who are hoping for a cure are very protective of their children and dedicated to their well being and do not condone violence toward anyone with autism.

I hate to play games about who is more sick,or more disabled,but you have no idea of what I have lived through.This might give you some clue.

http://www.cfdhope.blogspot.com

In addition to what I say here,I had profound motor developmental delays,and I was not fully toilet trained until I was eight years old.I did all the other stuff children with more severe autism do,like property destruction.

Nate,autism aside,you have never been where I have medically.I am sicker than a lot of the children whose parents post here.Screw autism.Autism is just one small part of this horrific syndrome I have lived with for 53 f***ing years.And it is not the only such genetic/metabolic syndrome.Autism is a tool you use to get a medical diagnosis,and real answers.

You have no idea what it's like to nearly die in a hospital ER,from acute heart failure,and have the doctors tell you they don't know why.And to have this happen more than once.To have acute pain in your arms and legs where they swell up and turn purple,starting as a child.And no one knew why.To have this go on for the rest of your life,only to find out in your early 50s that it was due to damage to your central nervous system,from severe systemic folate deficieny,caused by gene mutations and some weird autoantibodies no one knew existed until you were almost out of your forties.

You have no idea what it is like to suffer seizures,and not to twitch and go into convulsions,but to have blackouts,and wander for anywhere from twenty minutes to an hour,with no idea where you are,what you are doing,and unable to talk to anyone.To wander out into oncoming traffic,and have some kind soul stop their car,and restrain you until police or EMT can come,And then come around with no memory of the episode.And to live with this for almost fifty years,starting as soon as you are old enough to walk.

You have no idea what it's like to have the flu,have it turn into pneumonia,and not only suffer a serious autistic regression,but lose motor skills,and executive functions that take years to get back.

Ah yes,autism has such wonderful gifts and differences to offer.Everyone on the spectrum can be an Einstein or a Bill Gates,if they only had the proper support.

Bull.

linda, autism is not an illness. it is a personality trait so you are saying the person is bad whether you think that way or not.

Jen; Exactly
Roger pay no attention

Linda
Who cares!
We know what you said; it is an emotional game to them. Learn it, do some deep breathing. Horowitz is now into frequency and says 528 htz is great - go listen to that - I do believe it works.
They understood exactly what you meant.

Nate, how can you dismiss Roger so quickly? The fact of dismissing his situation so instantly tells me that your beliefs are very fixed. You never even asked him anything about his health or what things he has tried to help. I should think Roger would know whether he had improved or not with various moderations to his diet etc.

the reason why i think most curist parents are supermen/women is because they say things like "i want to kill my son sometimes and i love him" or "that parent murdered his/her autistic child because she had no other choice" as though having an autistic child gives them a licensce to spit illegal or outrageous stuff, sort of like a James Bond licensce to kill.

No I didn't say that autistic kids burden people, Nate. You are misinterpreting what I said. It is the illness that is a burden to the person with autism and everyone else. That doesn't mean that the person is any less loved, valued or respected.

If you have a child who can't sleep, who is always in pain, whose problems make it so that you can't work because you need to stay home with him but at the same time his illness requires $75,000 a year in treatment, and his behavior and your finances are such that there is no rest and no family vacation, and the attention that the child with autism needs makes his siblings have less attention from the parents, yes, the whole thing is a horrific burden. Not the child, the problems that come with autism. If you read some of the posts here by Kim and Cat and the others, you'll see how much their children are cherished and you'll gain some insight into their daily struggles.

It seems like you are defining yourself by your autism and you have a right to do that. But that is why you are threatened by talk of a cure. Obviously, not everyone here has that perspective. They see their children as children who have a condition called autism and they would like to see that condition cured. You don't have to accept that for yourself if you don't feel it is appropriate for you, but you should be hoping for help for those who need and want it. Not everyone is happy being a "spectrumite".

whoever convinced you you were sick, Roger, i don't know who but you've been victimized not by autism, but by those who told you you were sick.

you like to make us look like we're The Joker or something.

I would agree Autism Speaks needs someone on the spectrum on their board,but they need to have someone on the spectrum,who agrees with their basic goal.Not somebody who will try to reshape AS into a mouthpiece for neurodiversity.This is why I have said I would be very interested in being on the board myself.I am unique,in that I am adult,who has experienced most of the serious medical problems,developmental delays.learning disabilities,etc.And I have recovered,albeit with some brain damage.I believe given my experiences,and the stated goals of Autism Speaks,there is no adult on the spectrum more qualified to be on the board than I am.

Nate,actually it's those who believe in neurodiversity,who think they are supermen and superwomen.They are the ones who go around talking about how much better they are than "mere" neurotypicals.All you need to do is look at the posts on this page.

I wasn't saying NT kids burden anyone, just like autistic kids don't, but Linda was saying autistic kids burden people, so if she can say that, then she should be able to say the same thing about NT kids. i was trying to get a message across.

My son was high functioning, even as a child. His language was slow, but it developed well during early elementary school. He had many medical issues typical of kids on the spectrum, and I addressed them as well as I could with many interventions including IVIG. He was always bright and talented, especially musically, but as his medical issues were treated, the expression of his talents was greater. Now, he still has some autistic traits, but would probably not fall on the spectrum, and his talents truly shine. I will continue to help him with treatment as long as he is willing. Wouldn't it be wonderful if I could help him with his sensory issues so that he can tolerate wearing long pants on days when the temperature is below freezing? I really don't think that will diminish his musical talent, his personality, or any other aspect of his worth as a human being in any way. All I see is an upside. Am I wrong?

Nate writes: "The fact you guys think that your kids are nothing..."

That statement by Nate is not a "fact." The view that anyone with a diagnosis of autism is "nothing" has never been expressed on AoA, ever.

Brain injury resulting from causes such as trauma,hypoxia, and stroke are routinely treated to help the afflicted individual regain cognitive and other functions. Why should iatrogenic vaccine induced brain injury be treated any differently?

So, Nate, you say that NT kids burden their parents with "constant detentions, Fs and lack of study in school, bad attitudes, laziness, irresponsibility, lack of detail, lack of respect for their elders." And you're opposed to demeaning stereotypes?

And by the way, why did you assume that we're all NT here?

I don't see the neurodiversity movement as a "cult". From what I've seen it is being organized by people who have been marginalized, mistreated, and misunderstood most of their lives. If by "cure" you mean treatment and help so people can have fulfilling lives, then say the latter. "Cure" implies that it will permanently be eradicated, and the person will be "normal". No one who was born with autism, or an autism spectrum disorder asked to be born that way. Who knows what causes it. Whether genetic, or environmental. The point is to see how to help someone on the spectrum navigate the world, and how to establish relationships with not only NTs, but others like them, and hopefully have a meaningful life. I know there are severe cases of autism where the people are so overwhelmed by excessive sensory input that they are unreachable by regular methods. For them the concept of a livable life may be from their viewpoint whether just a lessening of sensory input, doing normal everyday functions we all take for granted, and so on. But portraying autism as some malevolent entity (in a recent PSA)who is hellbent on making NTs lives miserable as possible doesn't send the right message in my opinion. And you see all of these parents in the PSA congratulating each other and so on,but what about the people on the spectrum? Are they non-entities or something? No, they're human beings, who just happen to have a different way of processing information than regular people. Some very brilliant people have had AS, or been on the spectrum, and have brought great insight, social change, and creativity to our world enriching all lives. Granted, I know not everybody reaches their full potential, but anyone with potential should be given the chance to express it. Stop treating these people like things, or animals, and start trying to understand their points of view. Get people on the spectrum on your board. Otherwise Autism Speaks does NOT speak for people on the Spectrum. Thank you,

Steven R. Poole

Autistic people want to advocate for themselves. Many of the so called non verbal people can communicate for themselves in other ways. If Nate wants to refer to himself and others as a "spectrumite" that is his right and nobody needs to accuse him of being racist. While I dont appreciate the neurodiversity group putting down those who want to find the root cause of autism (Outside of the different from birth theory). Autism speaks has done a terrible disservice to autistic people through it's fear based rhetoric. I have a child on the spectrum and she has enhanced my life not ruined it. She has gifts to offer society because she is autistic.

how dare you compare autism to not wearing a helmet. we autistics tell you time after time that this isn't the case and you choose not to listen to any of us. that won't get you a lot of points for the afterlife.

I Should have added that murder- suicide is not justifiable. It's just so sad to see that this is happening. "Screening for autism" by sex selection and tragedies like these make autism a definite crisis at this point.

as Superman-like many of you think you are, you aren't, and that's what autism is for is to show you that you are not superman.

well, many of you guys think being NT is all your kids need (never mind the constant detentions, Fs and lack of study in school, bad attitudes, laziness, irresponsibility, lack of detail, lack of respect for their elders, ect.)

The fact you guys think that your kids are nothing is very cult like. since when is cherishing someone's abilities a cult???? listen to how negative and inhumane you sound.

Kim and Roger, yes, and if autism or severe ADHD is so great, why was there a murder suicide by one of the child/parents in a school I have been to?

One more thing...

Parents, be sure to explain to Johnny that the reason why he has to wear a helmet is not because he has a problem. No, it's because he's special. His tendency to bang his head against the wall is a gift that we should all celebrate. Be sure to explain to him that to do anything to stop him from trying to bash his head in would not be very loving towards him. That you must accept him the way that he is and not try to change him. Maybe even the helmet is too much interference with his special gift.

Debra Hosseini,
I think you need to take a break from writing and do some reading.

Neurodiversity IS a cult.Sadly it is a cult that has sucked in a lot of parents into believing their profoundly disabled kids can be the next John Elder Robinson or Temple Grandin.

My kids are NOT sacrificial lambs here to guide the universe or make me or anyone "better." That sounds CULT LIKE. And frankly, F'ed up.

KIM

Nate Watkins,most of the people who talk like you do are the ones who are out of touch.You have no idea about the advances in recent years as far as the inborn medical conditions that have been discovered in the last fifteen years or so that have been found to cause autism.A trait you share with the vast majority of doctors.I follow the research on all of this intently,in part because it has allowed to get two,and soon three,different metabolic/genetic diagnoses for my "autism".A complicated form of cerebral folate deficiency syndrome,involving mutations on at least half a dozen genes.

You,and the rest of the neurodiversity movement are the ones who are out of step with much of the current research,when you say metabolic,mitochondrial,autoimmmune,and GI disease are unrelated conditions that have nothing to with autism.

Nothing says self advocacy like working your butt off to get a medical diagnosis for your autism.All on your own.

The racist angle has been expressed - persons with autism are special humans that are able to solve the world's problems because of their autism. Now we have autism worship - like a cult - they're here to lead us. We should cherish their difference (never mind the seizures, the wandering, the diapers, the inability to function, the stress, the pain and expense, for so many).

I'll excuse myself from this "discussion" while I still have some hair left on my head.

I write about Autistic people all the time. My son is Autistic. I honor his Autism. I believe he's here to lead us. We have to move into compassion. That's what our kids are teaching us. They respond to the chaos of the world and other's emotions. Those who are non-accepting of these kids and adults are creating more havoc and division. You may want to help your child with biomedical interventions. That is okay because many of our kids have sensitive digestive systems. You must start accepting your child every minute for who they are. Until the world starts doing this, I believe the number of children with autism will continue to increase. It's not about curing autism, it's about moving into compassion for people who are diffferent.

eliminating autism is like eliminating people with them. AOA is stuck 50 years in the past. This kind of thing they're advocating is something people in Uganda would do and not in America.

Let me make a note here that most of the people saying autism is a disease are NTs, which just comes to prove how most shouldn't speak for us.

One final point I'd like to make is that if parents are finding improvement with dietary measures for their child (CFGF) then why the negative characterization of this as 'trying to change the autist". Pain /bowel problems SHOULD be addressed and changed! With all that we are seeing in research in terms of the gut brain connection this should be welcomed. I have worked with some kids who seem to have some pretty big pain, discomfort or sensory issues that need more addressing, medically. As much as it might upset some higher functioning persons with autism that environment can change or improve things, this is what is happening. Many parents have seen improvements with dietary measures and this tends to point against genetics.

I know engineers whose children have been diagnosed with ASD. Some of them are happy and have learning differences (dyslexia is one). Others I'm not sure of the underlying reasons for the diagnosis, but I do know that they are in gifted programs in high school. These parents would agree with the genetic theory. And I have noticed a certain lack of caring on their part and closed mindedness with regard to others with the same diagnosis. What irks me is that their children's condition, if one could call it that, bares absolutely no resemblance to what Cat's Ronan or Kim's three girls or hundreds of thousands of other children have whose condition/decline/regression began after vaccines.

I think it is wrong to lump these vaccine damaged children in with the others. I don't think that it is the same condition. If it is, it isn't helping the vaccine damaged to be associated with those denying their existence. Which is the irony here...the so-called high functioning are proclaiming that they don't want to be disrespected and that they aren't being valued, all the while completely disregarding and being completely insensitive to the plight of the vaccine damaged. And maybe that word "damaged" strikes a cord for the literal among us. By that I mean that they have suffered terrible devastating injury, NOT that they as individuals are less or less valuable than anyone else. We should all be pouring all the love we have into supporting these children and now young adults and we should be working tirelessly to prevent anyone else from this injury. One thing that is clear from these posts is that those claiming to be autistic aren't listening to what is being written about those who are suffering from their autism. Maybe that inability to empathize is part of the genetic trait they say they have, or maybe it is the result of a vaccine injury that they are unwilling or unable to recognize.

When someone is crippled from a car accident, you love them just as much after and you accept them but you do whatever you can to help and to heal them. You never say that you're glad the accident happened.

Jen

Yes, and Deer's claims on this matter are the continuing subject of Wakefield's libel suit in the Texas High Court. There are many problems with Deer's case but one of the most serious objections is that the patient histories were not assembled by Wakefield at all, but by senior Lancet paper author John Walker-Smith and Walker-Smith was completely exonerated in the British High Court nearly two years ago. Judge Mitting found that the data had been accurately reported (we had numerous articles demonstrating this on AoA in 2011 prior to the Walker-Smith hearing). Several my links below bear on these issues.

I'd like to correct a few misrepresentations that the neurodiversity people have been spreading here. First, I never said that autistic people are burdens. I said that autism is a burden for many families -- and especially the autistic members of those families. The financial toll and, more importantly, the emotional toll it exacts can be overwhelming. We all know the study that showed that autism mothers suffer levels of stress equal to that of combat soldiers.

I know that autism is a burden because I observe my own children struggling with those burdens, but also because the neurodiversity posters have acknowledged those burdens -- "food allergies", "sensory issues", "gut issues", and (because autism often impairs the ability to perceive danger) victimization by people "who see me as vulnerable prey or something they can exploit and discard."

Autism, frankly, is a disease that has no real up side, and human beings should not be defined by the diseases that afflict them. Given that autistic children are liable to wander and drown themselves, it can be a life-threatening and sometimes fatal disease. To be sure, some autistic people can achieve great things, but they achieve them in spite of autism, not because of it. I know that, because my two autistic daughters were both bat mitzvahed, and that was an incredible achievement precisely because they had to overcome neurological obstacles that most kids don't have to deal with. To suggest that autism somehow helped them devalues what they accomplished. If I may draw an analogy, polio victims can also achieve great things (one of them became President of the United States), but polio is still a disease that ought to be eradicated.

Yes, everyone here at AoA wants to eliminate autism -- but no one here wants to eliminate our children, who suffer from autism. If we wanted to eliminate them, we could easily accomplish that by packing them off to institutions and forgetting about them. Instead, we devote much labor and expense to curing our children -- and we define "cure" as enabling them to live independently, pursuing any line of work they choose, able to speak their minds, capable of forming lasting and loving human relationships, and free of the pain and disability that autism causes. For example, one of my daughters suffered from GI distress, and cried herself to sleep every night until we changed her diet: ever since she has slept soundly. Were we wrong to cure her?

Of course, if you have a very mild form of autism or any other disease, you may legitimately decide that it isn't worth treating, and any responsible adult has the right to refuse medical treatment for any reason. But no one has the right to deny treatment to those who want and need it. Jim Griffin insists that "The only ones who need a "cure" are the most severely affected" -- but frankly, Jim, that's not a decision you can make for other people. My older daughter is high-functioning, and she says she definitely wants to be cured. I'd call that "self-advocacy", wouldn't you?

Angela, we aren't saying that "all autistics need help or ong term care" but the reality is that some will. It seems like some of the higher functioning people with autism are in denial that some persons do not read or even are able to communicate with devices. I know that there are efforts in this direction which is great and it should of course be done in spades. I would like to think that with more resources that it is possible for everyone to communicate. But persons such as yourself do not do these kids any favour by denying some of the problems faced like communication difficulties, bolting.
And John Stone or Ottoschnaut, correct me if I'm wrong, but as per Jim Griffin's point about "the children in the Wakefield study mostly having had symptoms before they were vaccinated", didn't Brian the weasel Deer actually change some of the records in this regard?

What's going on here anyway?Did ASAN send out some kind of email alert about this particular post?

That said,I'll tell you what I don't see here from any of the very high functioning autistics who have been posting here.I see no acknowledgement of things like seizures,GI,immune,mitochondrial,or metabolic disorders.None are in their 40s or 50s,and still live with aged parents,like I was,and none have had multiple regressions all of their lives.I will never forget a video I saw once online of a Q&A with Temple Grandin where she said that regressive autism was something completely different from the type of autism she talks about,and she didn't want to discuss it any further.

ASAN and the rest of the neurodiversity movement have a slogan they use over and over again about Autism Speaks.I suggest those of us who see autism as a medical disability,that needs to be treated and cured,start turning it around,and say ASAN does not advocate for me.

Like a lot of parents with severely autistic children.I was thrilled when Suzanne Wright came out and said what she did.My only problem was that she was too cautious with what she said,and did not go far enough.

The differences across the spectrum are too great,the needs are too different,and we can't all get along.It is high time we stop pretending otherwise.I am sure there are parents here who have children at both ends of the spectrum.You will of find as the children get older,the higher functioning sibling has nothing to do with the lower functioning one.This only gets worse as the siblings get older.

The two sections of the autism community can be neatly divided between pro cure and anti cure.Like a marriage that never worked out,we need to split up,for good.Both sides need their own organizations,voices,and advocates.

To the historical researchers who in the future will be looking for the full collection of arguments as well as tactics used against parents that actually witnessed vaccine reactions or had enough sense to figure it out; You will find them all in the below blogs.

1.) If you complain about your child's health - you are saying they are a burden
2.) The one big name doctor that stood up for you was a fraud
3.) It is genetic and the increase was caused because like people attracts like people.
4.) For those that were rarely injured by vaccine there is a benign vaccine court..
5.) The reason there was an increase in autism was because every learning disability was lumped in the DMS-V autism spectrum.
6.) Autism has always been around

Yes, I know future history writer that number 5 and 6 are the worse ones of all; considering the increase in ALL learning disabilities, along with mental illness, drug abuse the long war of drugs), and auto immune diseases.

Also; Yes, I know these arguments sound really - not logical; but if you read the below blogs and the way they were word smithed it might help.

Chromesthesia and Pete:

Why the digs on Wakefield? Since you brought it up- you are certainly entitled to your opinions but you come off as ignorant or agenda driven when you misstate the facts.

Pete writes: "Wakefield's study..." Lancet 1998 is not a study- it is a retrospective case series analysis.

"...that made the link between Autism and vaccines..." The Lancet article states there is no evidence of a link between MMR and autism.

"...included 12 children of which, most had symptoms before they were vaccinated." The vaccine schedule starts day of birth.

"...He was paid by a law firm who wanted to bring legal cases against big pharma in the UK." Wakefield was paid by Royal Free Hospital and acted as an expert witness for legal interests, and disclosed the outside funding to Lancet before publication.

"But understand this. As there are children who have been injured, for every one that has, there are a million children who have been protected from diseases that could kill them." Where are the 1000 million "protected" kids you claim justify the cases of narcolepsy caused by the flu vaccine?

http://www.nbcnews.com/health/swine-flu-shot-linked-narcolepsy-study-finds-1C8573482

http://www.bmj.com/content/346/bmj.f3037

Wakefield is not a fraud. The inflammatory bowel disease his team described under the supervision of Professor Walker-Smith has been confirmed on a molecular level, using the absolute gold standard of independent biopsy analysis of diseased tissue.

http://www.ncbi.nlm.nih.gov/pubmed/23520485

Brian "Those Children Don't Have Bowel Disease" Deer has caused incalculable, agonizing suffering for uncountable children with inflammatory bowel disease.


I'm astonished at the narrow mindedness of this text. How are you going to prevent autism? Only let certain types of people 'breed'? Or maybe abort those babies at risk? Sterilize autistic people?
This is like what the Nazis were promoting! Let's have a race of people who just follow rules and do as they're told..?
When I was hungry, did you feed me? When I was naked did you give me clothes? If you did this to the least of all you did this to me (Jesus).
Ok there are many more autistic people...and old people. It's time to gear up for being a caring nation, not one that ignores, rejects, marginalizes.
Love and acceptance will go further than trying to wipe out autism...we are all somewhere on the spectrum.

Jim Griffin

There is no more slippery word in the journalist's lexicon than "debunked". All it really means is that a lot of scorn has been heaped on a certain view and it is professionally/socially unadvantagious to explore it - it is a cop out. The bottom line is that vaccines cause encephalopathies and other organic damage and inflammation resulting in such conditions as autism, quietly recognised in the Vaccine Injury Compensation Program. This, apart from anything else, was confirmed by VICP officials to both Sharyl Attkisson on CBS News and David Kirby writing in Huffington Post:

http://www.cbsnews.com/8301-31727_162-20016356-10391695.html


http://www.huffingtonpost.com/robert-f-kennedy-jr-and-david-kirby/vaccine-court-autism-deba_b_169673.html

There have been a good many awards but the cases end up being sealed:

http://digitalcommons.pace.edu/cgi/viewcontent.cgi?article=1681&context=pelr

Peter, father of an autistic child

Wakefield was only providing evidence of one possible aetiology for autism. It is normal for experts to be compensated for court work. See point 11 here:

http://www.canaryparty.org/index.php/the-news/118-open-letter-to-the-sponsors-of-brian-deers-lectures-at-the-university-of-wisconsin-la-crosse-october-2012-

I am autistic and Autism Speaks does NOT speak for me. As I child I kept to the animals and my books and avoided people as much as I could, but as an adult I have friends work full time and do volunteer work. I deal with the sensory issues I struggle to manage my own home and pay my bills but I'm not a burden. I was born this way and life hasn't been easy but I don't need to be cured nor do I need anyone's pity. I can and often do outwork my coworkers keeping focus and intent long after they have faltered. To say all autistics need help, all need to be in an institution or need long term care is WRONG! Even many who have started out very "low" functioning DO improve and function very well Temple Grandin is one everyone knows. Yes I have food allergies and gut issues but that's no reason to wipe me out or those like me.

What can I say here? I am an adult with an autistic spectrum disorder. I have a master's degree and I am a licensed therapist. I was diagnosed less than two years ago, but I have been on this planet more than 40 years. I have always had problems related to this disorder including sensory issues, being very literal, and not understanding why other people made such a big deal over stuff like sports and homework, etc. But I doubt that I was ever a burden to anyone. My challenges have made life hard for me. I was bullied as a child. People didn't understand me or what matters to me. They are often critical and harsh. I can't hold on to jobs. My parents didn't think I could be independent and tried to hold me back and make me dependent. but I live independently. I probably could have been an engineer or mathemetician like I was always told that I should, but I didn't want to be like my father who always has his nose in a book and lacks people skills (autism wasn't usually recognized back then - he served in the military for over 20 years but was always an 'odd duck.')

Autism is a mixed blessing. We face many challenges, but we also have strengths. We can focus on a problem until we figure it out. We have a different perspective. We are honest and it wouldn't occur to us to be otherwise. I mostly have problems with people who don't accept me for who I am, or who see me as vulnerable prey or something they can exploit and discard. I never had anyone believe in me or encourage me. It's been an uphill battle all the way. I have never belonged anywhere. finding out that I am on the spectrum and there are others like me has been a turnaround point for me.

What about those who are low functioning? They do need more support, and there are things that they don't understand or can't do, and need to be taught or assisted. But they also need to be recognized for who they are and for their strengths. They do love their caregivers even if they don't know how to show it. They understand more than you think. They deserve respect. And some do grow out of the worst of the disability.

I don't like the way that AS misrepresents us. I do see a need for support for people with ASD and their caregivers. I see a problem here related to theory of mind. Perhaps higher functioning ASD people don't always understand what caregivers of low functioning people need. But those caregivers don't seem to be trying to understand us either. Our needs are not entirely the same, but there is some common ground. Can we try to listen better, on both sides, and try to work out a way to come together and support each other? Is it possible?

The focus should be on helping families with severely autistic children and adults they need to care for. Science should be allowed to go forward and explore any theories people have, but we should accept when things are truly debunked (like vaccines causing autism). But it should be recognized that autistic traits (when not in excess) are simply human traits and often are part of what people are.
It seems like Autism Speaks makes all autistics out to be victims of a horrible disease like smallpox that has to be totally eradicated. The only ones who need a "cure" are the most severely affected. Any human trait in excess can be a problem, and it looks like autistic traits are just like that too. Humans evolved not to be all the same but to be different. Left handed, blue eyed, red hair, etc. Many of these differences aren't a problem. Those of us on the mild end of the spectrum most of us anyway don't want a cure or to have been "prevented." We aren't better or worse than anyone else, are not geniuses, are just wired a little different. So are people that are good at sports or at leadership,or nurturing, teaching, etc. People aren't all the same. Nor should they be.

Anna, of course the adults whom you are speaking of bring something special to the world- everyone does! But the 'neurodiverse' groups speaking out against things like tracking devices is not helpful. These kids deserve to be safe- they are very vulnerable.
I would argue that it is their acceptance that makes these parents able to advocate. Ignoring and not facing these realities is not helping anyone and is the opposite of acceptance.

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