High Functioning? Then Shut Up!

That's the message sent loud and clear by nearly every autism organization (in the media spotlight: TACA, Autism Speaks, et al.) these days. They don't care what you were like as a child, what your struggles were, or the issues you face now. If you are able to speak to reporters or blog or live independently or hold down a job, they don't need you. Rather, they'd prefer you just shut up and go away.

Oh, but wait...but they do need you. Sometimes, at least.

A lot of the comments from the ABC piece were, as expected, the same regurgitated message we hear lately. The idea that those with Asperger's (or that are "high/er functioning" as they put it) can't possibly be on the same journey as those with classic autism. Don't listen to them. That's not the autism my child has! Those people have no right to speak for the autism community! And yet, it's amazing who they do want to represent the "autism moms" of the world. It's also interesting to see how these people determine what "high functioning" is and what it isn't. It's also curious to learn their criteria, if they have any, for "Autism Recovery."

This group (typically the anti-vaccine and pro-cure folks) presumes that an individual living with Asperger's has not faced any struggles. That they don't have sensory issues, meltdowns, social or communication issues. Basically, in their eyes, they have no business being on the autism spectrum (hello?!). They apparently have never been bullied, don't have problems at school, have no trouble living independently, and all can easily find jobs. Anyone who knows an Aspie or someone who is (as others would classify as being) "higher functioning," can attest, this is not the case. Not to mention, the now-Aspie adults who were previously diagnosed with classic autism as a child. Unless those individuals can be used to further sell their "cures" and you agree to be exploited, labeled "recovered," they don't want to hear from you.

They treat us parents who find joy in our autistic children in the same manner. We are crazy, foolish, and even sometimes seen as harming our children. Really--harming them by not injecting them and not forcing supplements down their throats. Harming them by not subjecting our children to needless and harmful chelation and a myriad of other "treatments." Harming our kids by letting them know we respect and love them? We parents who are not suffering, we are a major inconvenience for these organizations. The parents and autistics who believe in and promote neurodiversity, are even described as being "radical."

Neurodiversity is about real civil (and human) rights. People all along the spectrum are being abused, discriminated against, and are not given equal protection. Many have to fight (and sometimes lose) in order to get the right to an education, to work, and even to participate in our culture--and that is the entire spectrum.

It's interesting to me--those who are seeking a cure (and are disgusted by acceptance or "neurodiversity"), are very quick to use the "1 in 150" stats, and employ them to make a case that there is indeed an "autism epidemic." Yet, they continually discredit adult autistics. When autistics speak, they are the first people to dispute what is being said.

The "1 in 150" includes the entire spectrum. You can't pick and choose how you interpret that number (the one that points to an "epidemic"). You can't use a certain subset of autistics only when they, as a number or statistic, suit your needs.



I had drafted this last week just following the Neurodiversity segment on TV. I read Joy of Autism last night, where this myth along with others are brought to our attention:

4. Biomed autism advocates like Jenny McCarthy's TACA group need and use "higher-functioning" autistic people in their statistics to try to prove there is an "epidemic" on the one hand, while stating on the other that they are not "severe" enough to speak for autistic people.

These myths really need to be addressed by all of us, and especially by groups like TACA, Autism Speaks, and so forth.

The Autism Whisperer Cometh

From Jim Carrey's speech during the "Green Our Vaccines" really.

Autism is everywhere. It's on every street, in every town. It's a warning from the universe that there is a serious imbalance in our environment and that immediate changes must be made.

Woah--almost sounds like some of that new-age Indigo type of talk. I wonder if he is a crystal? He continues on,

To quote Burton Goldberg, an expert on the new age of medicine, 'autism is the canary in the coal mine.'

Bev at Asperger Square 8 has a different take on the canary metaphor (which apparently is also popular with a one Dr. Bryan Jepson). Dr. Burton Goldberg, I feel it should be noted (since we are referencing autistic children, vaccines, and other medical-related issues) received his Doctor of Humanities Hon. from a Capital University of Integrated Medicine (it may also be of interest that this school closed down in June 2006). He is a publisher, and the self-proclaimed "Voice of Alternative Medicine." That's right--he is not a medical physician.

Mr. Carrey continued on with the importance of trusting a mother's instinct, not trusting the government, and bashing the drug companies. He then adds, in reference to the pharmaceutical companies:

...they are far too busy fighting the scourge of restless leg syndrome.

Roars of laughter, hollering, and applause. He continues,

Also known as lazy ass disease.

This also is met with screams and yelps and more laughter. I loved it the one time when I was at a fund-raiser for cancer research, the speaker cracked a joke about people with diabetes. It was hysterical! Oh, wait, that never happened. That would never happen--would it? No, I think only people with the mindset that autistic individuals (along with any person with a neurological or mental difference, disability, or disorder) are not afforded the same respect or rights as others would say such a thing.

There is making light of one's differences, and then there is outright bashing. This was not funny (although it appears the audience was rather entertained), and certainly not amusing to the people who really do suffer from Restless Leg Syndrome. My mother has it. She is not on one of the new medications for it, but on some nights she does take Ambien. It is something that has plagued her for as long as I can remember. She simply has had an official name for it in recent years; but she stayed awake many a night well before a name existed for this condition. I simply can't imagine making fun of someone else in such a manner, at such an event. But, then again, we are speaking of the same group of people who time and time again present themselves as less than professional (see below for more on that!).

Jim Carrey does actually say that "these children have a purpose" at the end of the speech. However, the tape shifts to Jenny's speech. So, I'm unsure what he perceives as the purpose of "these" children. Is it to be a part of society, respected and welcomed? Or is it to make some great change via the "greening" of vaccines?

Jenny goes on to speak, and describes herself as a mom of a child "who had autism." I wonder if she's changed her mantra--which used to be that he'd never be "cured" of autism. In every article, they define her as the mother of an autistic child. I believe my favorite Jennyism from that day was this:

"...and the ingredients like the freakin' mercury..."

What class. Once again, please don't group me in with the "autism community" and the "autism moms" you, Jenny, claim to represent.

Can someone who has watched the YouTube video posted here, please explain what the headless child sculptures are at the end? Please, please, tell me that is in no way related to this rally or to autistic people.

Maybe It IS Easy To Be Green?

As Kristina at Autism Vox points out, the message of "change the schedule!" is rather diluted, and fairly innocuous. We never saw a difference post-vaccines with our child. She was diagnosed with developmental delays by 6 months of age, likewise she had issues at birth. So, we would opt to have our child get fewer pokes. Also, as Dr. Chew points out, this also amounts to less doctor visits and fewer co-pays as well.

That being said, anyone who opts to space them out (vaccines), I don't have much issue over that. I would feel rather different, however, if this "spacing out" of immunizations included complete avoidance of any specific vaccines currently available for our children. This is often the rallying cry, to not "expose" your child to the MMR (although let's all remember that the MMR never contained thimerosal, and I'm unsure what they believe is truly achieved by splitting it up). I'm fairly certain Ms. McCarthy has said publicly if she had to do it again, she would not vaccinate her child (or at the least, she'd avoid the "autism shot" as she refers to it; she'd prefer measles to autism remember).

Perhaps further down the road, we'll get a more accurate definition of "Green Vaccines" by Jenny, Generation Rescue, TACA, or others. At this stage, it sure sounds like amongst the antivaxxers, this term means many different things to many different people.

If you read nothing else today...

It should be this! Kev (LeftBrain/RightBrain) continues to do an outstanding job reporting on the Autism Omnibus hearings. Specifically today on Elizabeth Mumper's (medical director for DAN/ARI and founder of the Rimland Centre) testimony.

Some highlights: If you are testifying & referencing a study for a statistic (to support your beliefs), make sure those statistics are actually in the study! How accurate is the Porphyrin test (especially with regard to results in both autistic and non-autistic children), and does it detect mercury in the brain? Do not miss this!

Something interesting I came across was this: Dr. Mumper states she has never treated a child for mercury poisoning. Which, is somewhat startling to me, seeing as she is a DAN! doctor. I came across a few things that made her statement all the more puzzling. Here, from a vaccinetruth.org:

Chelation Use in Autism Spectrum Disorders

The role of heavy metals such as mercury in autism has been heavily debated, and many parents are turning to chelation as a potential treatment. Dr. Elizabeth Mumper presented her findings from treating children at the Advocates for Children Pediatric Clinic in Virginia.

She reports that she has treated 280 children with autism who showed altered metabolism of porphyrins in blood and urine. She uses this disruption in porphyrin levels as an indirect marker for heavy metal exposure, and in addition noted that these patients show a disruption in the methionine synthase pathway, also measured in urine and blood. In addition to chelation therapy, children receive vitamin supplementation to compensate for possible loss of essential metals lost during succimer treatment.

Although no statistical analyses were conducted on the effectiveness of chelation therapy in children with autism, Dr. Mumper has cited positive responses from parents who report an improvement of symptoms following oral succimer chelation therapy as part of the DAN! protocol.

And then here, on the DAN/ARI website, scroll down to the box at the bottom and read the "Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper." You will see that Dr. Mumper was one of the signed physicians on this paper.

So, let's see--it would appear she believes in Mercury/Metal Toxicity, has treated 280 children who she claims had markers for "heavy metal exposure," and that these children's parents have "cited positive responses" from her treatment. I'm curious if all of those parents realize that Dr. Mumper was treating their child for a "diagnosis" (heavy metal exposure) based on a test that she now states does not provide any evidence that mercury is in the brain.

I also wonder if all of those 280 sets of parents (or the many more that have been "treated" since) believed their children were not being treated for mercury poisoning. This idea, of mercury poisoning, is plastered throughout the DAN/ARI and Generation Rescue websites. In fact, many of the parents and activists affiliated with DAN, Generation Rescue, et al refer to autism as "mercury poisoning."

More Autism Awareness (a film, a study, and a press release)

I came across these 3 interesting pieces the other day (none of which have anything to do with robots). One is about a new film premiering tonight, the second is about a new study, and the third highlights the 'other' autism awareness (you know, the one that actually tries to help autistic individuals and their families, not the "vaccine awareness" or "Autism is the worst thing that can happen to a family" or other campaigns touted as 'autism awareness' these days).




"Autism Yesterday"

The film "Autism Yesterday" (yes, obviously a shot at Autism Speaks' "Autism Everyday") will premiere tonight at The Holland Center in Minnesota. It is a Generation Rescue documentary, which "explores an emerging truth many parents are discovering: autism is a reversible condition..." The film features five families, chronicling "heart-wrenching stories of despair, hope, and recovery." You can watch the trailer here, and decide for yourself. You can read the complete article on www.bio-medicine.org.

Autism Diagnosis 15-20 Years Ago...

More support, it appears, for the theory that autism cases are not necessarily on the rise over the last 15-20 years, but rather physicians are better trained to diagnose, more services are available to identify those children, and that how the diagnosis protocol has changed. Professor Dorothy Bishop, a fellow at the University of Oxford, has completed a study worth looking into. It suggests that children in the 1980's and 1990's who were diagnosed with severe language disorders would be diagnosed as autistic today.

"We can't say that genuine cases of autism are not on the increase as the numbers in our study are very small," she says. "However, this is the only study to date where direct evidence has been found of people who would have had a different diagnosis today than they were given fifteen or twenty years ago."

You can find the article and more information on the study here.




Awareness on World Autism Day from Easter Seals.

Regrettably, I missed this on World Autism Day. It is the only press release by any major organization highlighting the need for adult services. Easter Seals has their own autism website, on there is a section entitled, "Stories of Hope." It's nice to see a charity showing adult autistics being successful and also thriving families who support their children.

In the event you missed it too, here are some snippets from their press release (full release is linked in the title above):

“World Autism Awareness Day provides us with an opportunity to help raise awareness about autism services and treatments available to families today and the need for the United States to share what it knows about effective interventions with other countries around the globe,” says James E. Williams, Jr., president and chief executive officer, Easter Seals. “There are a number of wonderful organizations researching and seeking a cause and cure for autism. Easter Seals is unique as the nation’s leading provider of services and support for children and adults living with autism.

Critical Need for Services
Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps.

“There is an urgent need for increased funding and services -- especially for adults with autism,” adds Williams. “We want to help change all of this and make a difference for families living with autism today.”

Finally. Thank you.

Autism Is Treatable
While autism is a baffling, lifelong disability, it is treatable.

“People living with autism -- at any age -- are capable of making significant progress through personalized interventions and therapy; and, can and do lead meaningful lives,” says Patricia Wright, director, autism services, Easter Seals.

Treatable doesn't always mean injections, chelation, and HBOT sessions. I think they are utilizing this term, simply because that is what people want to hear (treat my child, fix them) and it is more marketable (look who they are up against for raising money, Autism Speaks, TACA, etc.). I like the point Patricia Wright makes, about how at any age, autistic individuals can make progress. So many parents see their child as an hourglass, with time running out to help them. You wouldn't believe how panicked parents are when their child is a toddler or preschooler ("if he doesn't do X by 5 years, he'll never do it," or "I'm afraid I missed all this important time, since T didn't get a diagnosis until she was 4" and so on). It's a great point, and also that Ms. Wright adds "and, can and do lead meaningful lives." Bravo.

Easter Seals + Autism
More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working nationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating in Washington DC to encourage Congress to finance research to improve services and supports for people with autism.

I can easily support an organization wanting Congress to finance research that will improve services and supports for people with autism (especially adults). I realize I won't agree 100% with all their campaigns or messages, but their overlying theme is that of support for autistic individuals, with a focus, most importantly, on adult autistics. What other major organization even mentions "adults" and "autism" in the same sentence? Some spokespeople for these major groups aren't even aware that adult autistics exist. So, I'll find it hard to not support Easter Seals, even if I can't stand behind 100% of their projects or partnerships. The greater good that hopefully will come from Easter Seals' campaign will benefit ALL autistics. One of the bills Easter Seals is working to pass, is the Expanding the Promise for Individuals with Autism Act of 2007.

Jim Carrey--Autism Expert??

Larry King read a message from Jenny's "mate" on his show:

"Vaccines are more of a profit engine than a means of prevention. And that's why there are so many vaccines."

Since when did Jim Carrey become an expert on anything in the medical world? On vaccines? On Autism? I realize he is the "Autism Whisperer," but wow, never realized he had received his PhD. To that point, why is anyone listening to a ditsy Playboy model? And, David Kirby, a PR person, again, not a physician or scientist. Really makes you wonder...

Jenny herself may need some medication (or perhaps she should try the GFCF diet, chelation, HBOT??). You don't go on Larry King, scream "bulls**t" to respected physicians, ranting and raving. Her voice is shaky, she really needs to sip some water and take a deep breath. I too get very emotional over my child. I have to really prepare myself prior to her IEP meetings. I bring a bottle of water, take slow deep breaths, read some inspirational quotes I have written in my notebook, and look at her picture I bring in with me. I remind myself continually to remain calm, regardless. I realize I will look like a raving lunatic if I lose my cool. I also am aware that if I get emotional and go off-course, nothing will get accomplished.

She wants measles over autism, any day??? Wow, is all I can say. She's been brainwashed by the conspiracy theorists, she is insisting that all the multiple studies on vaccines are whack, demanding an independent study.

Jim & Jenny are marching on June 4 for Generation Rescue/TACA Now, in Washington D.C. Joy. Gives new meaning to Dumb and Dumber. I'm curious if the walk in Atlanta, against the CDC is still on? I hope so, otherwise my plane ticket will go to waste (sarcasm!).

Seriously, Jenny

I just caught Jenny McCarthy's interview on E!'s Chelsea Lately show. Here is the link (bad language warning). Really now, it is frightening who we have speaking to the public about autism and supposedly representing "us."

She talks about how she asked Mormons to come pray for her "sick" son (and how when your child is sick you'll decapitate small animals, hmmm...). I wonder if this is before or after she discovered her child was a Crystal? To say that Ms. McCarthy was desperate for some type of hope for her and her son, is an understatement. I've never seen someone speak so frantically over their child's autism. No wonder she hopped onto the DAN bandwagon, and now is so 'into' TACA & Generation Rescue. One can only speculate what she may discover next, what group she'll become immersed in. Perhaps Dr. Carley will win her over?

We're not all screaming "HELP US!" At least we're not looking for the "help" you have been shoving down our throats for months. The help I want, is knowing that my school district has the proper resources and is giving my child all she needs to achieve her potential. The help I need is programs for my child and many others as they reach adulthood. I need help with transition from the school system, will my child have the opportunity to attend college? Will she be able to live independently, will there be housing options available to her? Is there vocational training available, and who will hire her? Will she be able to attain medical care, psychological services, etc. from reputable physicians? How will the world view an autistic adult in 10-15 years? If changes are not made, how many autistic children growing up today will be homeless in their 20's, 30's, or 40's?

She goes on to give the number to the White House, asking viewers to call and ask for the resignation of Julie Gerberding, CDC Director. Chelsea suggests telling the White House, "Julie Gerberding suck it hard!" and Jenny adds, "I was going to say aka the Devil." Nice. Later on, Jenny says she hopes "we create a major s**tstorm," over this issue. Lovely, now that's classy. I'm so glad that the public will look to Jenny and feel she represents all autism moms. I can only imagine what the media coverage will look like on that weekend in June when Jenny and her fellow Generation Rescue drones will descend upon the CDC. I wonder if their posters will have signs with the above mentioned quotes? Should be quite a circus.

The interview ends with Jenny stating that we (us autism moms) live in a kind of hell. Not me, no way, not by a long shot. Jenny, you want to know what hell feels like? For us, it was watching our child lay lifeless in the PICU. She had tubes coming and going, tests round the clock, she was essentially in a coma and no one knew why. We thought we were going to lose her. Jenny, that is hell, fearing that your child is going to die and you can do absolutely nothing about it, except pray every minute. Get some perspective. Life with autism is not this nightmare you are selling to whoever will listen to you. It's amazing that celebrities feel they can actually relate to moms in regular America. None of us can just go do a photo shoot to make some more money to cover our child's therapy. We don't have access to the press to speak up about our concerns and get funds raised toward what's really needed. You simply can't relate to us, and again, "we" don't live in a "kind of hell." And, besides, with your son "recovered," what exactly are you whining about?

In the very end, they both state that the government has said that vaccines can cause autism, as just decided in a recent court case. Really? Which court case was that, did I miss it?