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.

Today Autism & Recovery, Tomorrow Crystals & the New Earth

These previous writings have led to this. There has been talk amongst the autism community as to whether Jenny still believed her son was a crystal and she, an indigo. Her Indigo Moms website disappeared without explanation overnight. Many had wondered and assumed she had left these beliefs behind, and her focus was on autism recovery and vaccines.

Well, we now have an answer. As you learned from the previous entries, much of the Indigo/Crystal belief system revolves around the idea of over-diagnosis and overuse of medication with regard to Autism and ADHD. Not to mention messages from Kryon himself that say we give too many vaccines today. So, Jenny's new message actually isn't much different from her Indigo identity.

The Phoenix has another view on the Indigo thing. For those who have missed her Indigo Moms website, have no fear, it shall return soon. And, it seems, Jenny's next book is self-described as an "Indigo book." She is leading a movement alright. But perhaps not the same one that thousands (1,500-8,000 strong--depending on your source) of her "followers" believe in. It seems that her mission is to come out with the autism/recovery and anti-vaccine message first, and all of this will slowly lead into full-blown indoctrination of Indigos and Crystals.

To listen to this interview from The World Puja Network, you have to log-in to this site. It's a quick sign-up procedure. The show is called “CosmiKids' Inspired Parenting” with host, Sandie Sedgbeer. I have emphasized in bold the terms and words related to Indigos. The interview begins around roughly 26:00 minutes, it took place a couple of weeks prior to June 1, 2008 (it's air-date). The highlights (my rough summary and amateur transcripts):

JM: "I believe that without a doubt, Evan's vaccinations triggered his autism."

She then expands on other "triggers" of autism such as environmental mercury, pesticides, herpes, etc. Not surprisingly, zero mention of genetics. She clarifies with,

JM: "But the major one that's playing the biggest role right now are the vaccinations."

Talk continues on about the number of vaccines given compared to previous years. Discussion of the GFCF diet and supplements. Jenny says that sentences came after GFCF diet, recovery from autism (became "fully conversational" as she puts it) after treating her son's yeast issue.

JM: "It's like a ticking time bomb of you know and I...you know what a really good scenario is--is these kids,these kids with autism are really the canaries in the coal mine, you know, they're the ones that are showing us the effects of what is happening around us and they just happen to be more sensitive to it. And we can either take their warning and do what I did, and alter my lifestyle to a healthier one, or you can, you know, go down with the ship or be stuck in the mine with no oxygen. It's really them "tweet, tweeting" I keep saying. These are our canaries, and everyone needs take a look, listen to the messengers and let's start doing something about it."

We heard Jim Carrey declare the "canary in the coal mine" metaphor at the Green Our Vaccines (now also known perhaps as "Kryonize Our Vaccines") rally. Expanding on this generation of parents (the moms who follow their intuition and don't just sit around and let things happen to our children), Jenny says:

JM: "We're definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen."

I had honestly missed most of the "Indigo" language, until this point. I heard "Indigos" and was rather surprised at that. When I listened again to write it down, I heard "New Earth," but it didn't mean much to me, until I learned it's a part of Indigo (see Children of the New Earth) After the following statements, I looked into the Indigo "concept," and learned what those terms mean. Now realizing the significance of those words, it's clear that Jenny is still well-immersed in the Indigo/Crystal deal. At 45:34, this question is asked:

SS: "You mention the word Indigo. What happened to your Indigo Moms website?" JM: "You know I had to take that down and I was so sad to take it down, for a while anyways, it'll be coming back up. People got really confused because I was coming out with Evan's autism at the same time. And, they thought that I was healing Evan through Tarot cards instead of biomedical treatments.

So I realized I had to separate my messages and I had to take down one message which is the indigo and crystals, for now. I said, 'oh the world is getting confused with these two different paths,' you know. I consider them to be one. But people aren't quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I'm just like, I'm really following source, kind of I felt the need to do that, I'm just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality."

Either immediately after this statement, or later on, she reiterates this,

JM: "I was definitely feeling that from source."

When speaking about her new book, JM says:

JM: "It's really an Indigo book."

The interview ends with Jenny's message to the listeners:

JM: "The parents...the parents. It is time to take back your power. It's time to remember your power. Go within. Remember you have a voice. We are the seekers and doers of change and it is possible as long as you believe it. So join me in this collective awakening, in this new world, so we can have a perfect world for our kids."

And they call us radical? This last "rally cry" could just as easily be found on any Indigo site or message board. This same type of language and message are seen time and time again by the Indigo/Crystal believers.

So, I pose this question: How will the anti-vaccine group be altered once Jenny goes all-out with her Indigo message? Since it's apparent that Kryon and the Indigo concept is against most vaccines, at least that message will remain the same. But will the entire group get behind her, and also believe in the Indigos, Crystals, and Kryon? I wonder how many of those who follow the DAN! protocol and are against vaccines already believe their child is a Crystal?

Kryon On Vaccines

Yes, Kryon, the entity behind the Indigo child concept. Here is what he says, apparently having been channeled, on vaccines:

QUESTION: Dear Kryon: I've read and heard information for and against immunizing against various diseases, particularly those that affect children. Can you help me understand immunization? There are many options for immunization now. Are all necessary for children?

ANSWER: This is good science and was brought to you early so that you and your children could extend your lives. The original "mixture" for immunization that was created for the few basic diseases is still good for you and your children. However, there is now a tendency to increase the immunization to include over 17 different targets (or more). There's a problem with this, and it has already shown itself, but is not yet understood.

Ask for the original mixture if you can get it. It's the safest and most viable.


QUESTION: Dear Kryon, I have a new grandson. He's going for his first vaccination in the next few weeks. If we're beginning to transmute toxins with reconnections to our endocrine system through our DNA, then what happens to our babies, who by law have to be vaccinated? What are your thoughts on this subject?

ANSWER: First, know that vaccinations are a God-given science that humanity earned. They're a tried and proven homeopathic method that have been with you for years. You were probably vaccinated yourself, and it worked.

We have three answers: (1) God is not in a vacuum. Even the vaccinated Human Being who's older can modify and rework their DNA. So there's no time limit, and there are no rules that say "Once vaccinated, you're ruined." (2) The Human who is of the age of awareness can say, even as they are vaccinated, "Let nothing inappropriate enter my chemistry." This is a conscious instruction given to your "intelligent cellular structure" (the same one responsible for kinesiology and homeopathic results). This will result in your cells only using what they need and casting away everything else. (3) Finally, about babies: There has been a push by your science lately to vaccinate against many things at the same time. You'd be advised to seek out a doctor who will only vaccinate your child for only the basic diseases that have been known in the last 40 years. Eliminate the vaccinations for the new ones. This leaves you with approximately seven or eight - the very ones that have been used for years. What your science is not appreciating yet is the results of combining all the vaccination substances together. There's a problem that will show itself in time. Stick with the basic ones.

Now, it becomes more clear perhaps what Jenny means when she and her followers state "too many too soon" and "change the schedule!" Perhaps "Kryonize Our Vaccines" just didn't flow as well as "Green Our Vaccines."

Indigo Mom's Insights?

These are some questions and answers from Jenny McCarthy's interview with Doreen Virtue, from "An Indigo Mom's Insights - September 2006." Keep in mind, Jenny's son was diagnosed in 2004. The complete interview can be found here. It was on the Indigomoms.com website, which (for the time being) is defunct. You really need to read it in its entirety, you will learn about the schools that Jenny wants to open up, how McDonald's is the reason your child is hyperactive, alternatives to Ritalin, learn about crystal children's nightmares, and what the future will look like. Here is just one exchange, trust me, read the rest!

Doreen: When I go to Australia, I cry, because those Indigos, they ask what do I do? And I can’t tell people what to do. Their angels have to tell them. But they’re so ready. The Indigos of the world need a leader. They need a Joan of Arc.

Jenny: I’d talk to them.

Doreen: They do, they need a Joan of Arc to say, “follow me!”

Jenny: I will. I will be doing national news next May with my new book.

Doreen: Great!

Jenny as Joan of Arc? More from Jenny as an Indigo Mom:
June 2006
July 2006
August 2006
September 2006

Autism Acceptance: The Indigo & Crystal Way?

On one hand, the Indigo movement (or whatever you want to call it) claims to "embrace" children with differences, and that crystal children should be respected, that their "differences" are meaningful and are gifts. Crystal children, it seems, are essentially kids who have sensory integration issues, autism (or autistic symptoms), ADHD, gifted children, etc.

When I further "researched" the Crystals and such, I was surprised to find some similarities between them and those who speak of acceptance for autistics. For one, this group of people are very anti-medication. Many members of the Autism Hub, feel medication is overused. Most of us hold off on medication except for seizures, self-injury, debilitating anxiety, etc. We don't simply put our child on drugs because they are diagnosed with autism. And we are certainly against autistic individuals being drugged and locked up in institutions. Another similarity was the belief that these "Crystals" are a further step in "evolution," and somehow a higher state of being. I have heard more than one Aspie speak like this. Very controversial, for sure, but another correlation between these two groups.

From the Starchild website:

In my book "The Care and Feeding of Indigo Children", I wrote that ADHD should stand for Attention Dialed into a Higher Dimension. This would more accurately describe that generation. In the same vein, Crystal Children don't warrant a label of autiem. They aren't autistic! They're AWE-tistic!

These children are worthy of awe, not labels of dysfunction. If anyone is dysfunctional, it's the systems that aren't accommodating the continuing evolution of the human species. If we shame the children with labels, or medicate them into submission, we will have undermined a heaven-sent gift. We will crush a civilization before its had time to take roots. Fortunately, there are many positive solutions and alternatives. And the same heaven that sent us the Crystal Children can assist those of us who are advocates for the children...and its a good direction!

So, I find it even more interesting that the belief system, if you will, that Ms. McCarthy holds near and dear, has such a theme of acceptance. They promote the idea that diagnoses like ADHD and autism are wrong, and given too often to these "crystals." Which further begs the question to Jenny: is it really all these Crystals being misdiagnosed--and not really a rise in autism or ADHD cases? Or is it the vaccines? I'd be interested to get her take on that.

I find it odd that in one breath, McCarthy speaks so highly of the Indigos and Crystals, and one would then think she would be accepting of her son's uniqueness (i.e. autism or autistic traits). And yet, the message of Jenny McCarthy is one of "fixing" and "altering" these children (with the goal of recovery, i.e. being indistinguishable from their peers). She tells us that her "perfect child" was "all of a sudden" gone. She now proudly declares she "recovered' him and that he now is no different than his peers.
Kryon's statement on Autism can be found here (click on "Autism). I must admit, I find myself agreeing on at least two of these statements, the first that Autism is genetic or at least something that a child is born with, not something they "catch" later (I have said before I feel my daughter was born the way she is, that it is a core part of who she is--not something separate nor caused by toxins, etc.). The second, is the last statement in the answer:

Perhaps it’s time Humans moved a bit in their direction, instead of teaching them how to exist in yours?

The Indigo and The Crystal

I've gathered some information, a primer if you will, on the Indigo and Crystal belief system. You will find these terms and definitions helpful for my next couple of entries. I have opted to not make an outright judgment call on the believers in this, except for how it may interfere with autism (and ADHD). Checking out the Skeptic's Dictionary is also helpful, there is a lot of background information on this.

Terms/Definitions

"Source" also known as "Spirit" as in:

"The color associated with the Crown chakra is white or deep purple and its function is the direct connection to Source or Spirit."
"They are so directly linked with Source that they can easily understand and tap into the Divine resources."
"We can in turn heal our children of imbalances by going directly to Source and filling our hearts to be healed with Divine love and light."

The New Earth, as mentioned here:

GOLDEN AURAS, HUMAN ANGELS AND MULTI-DIMENSIONAL CONSCIOUSNESS

The Indigo and Crystal children that come to the planet are known as "starchildren". Often this is because their souls are more at home in the stars, and they have not incarnated on Earth before. They come at this time as a "special assignment" team to assist Earth and her inhabitants with their transition and rebirth as a higher dimensional "New Earth".

Many Indigo and crystal children are already almost at this point of awareness, if not fully within it. As are many of the Indigo-Crystal adults who have made the transition to this state. It is these new beings, able to claim both their human and angelic inheritances, who will create the New Earth.

For Human Angels there is work to do. Creating a New Earth that will bring Heaven to Earth. And since "heaven" is not so much a place as a state of consciousness, these Human Angels must work to bring the higher dimensional states of consciousness to the Earth plane. Once this is achieved, then a planetary culture will be birthed that will respect all beings as manifestations of the Divine Essence. And this culture will reflect that respect in its peace, harmony and creativity.

Indigo and Crystal Children

Indigo
Indigo children usher in a new energy that is transforming the planet around us. They are groundbreakers, creative rebels and independent thinkers, people who will go their own route and leave people and things around them changed.

Crystal
Crystals instinctively channel healing energy. Their crystal nature enables them to pick up energy and aura colors from the people around them. They are acutely sensitive and are even more likely to become healers and lightworkers than indigos, but need space to themselves and a lot of care.

Many crystal children are born autistic or die in infancy because they are so remarkably sensitive. It has been suggested that the indigos are here to transform the world to one in which the crystal children can survive and do their work.

More "facts" on Crystal children can be found here.

Vibrations, further explained here:

They are called higher vibrational because of the way their auras work. All colours (and all things, for that matter, since everything is made of some kind of energy) vibrate at different levels. The higher an object's vibration, the less connected it is to this physical world. Colours such as Red, Green, Orange, and Magenta are low level vibrations and so they associate more closely with the physical world. Yellow, Tan, and Lavender are examples of Central colours (between a low vibration and a high one) and Indigo, Crystal, Blue and Violet are known as the Higher vibrations.

Just as the lower vibrational people are connected to the physical world, higher vibrational people are connected to things outside of our reality. Although they all vibrate at a high level, each colour has a different level at which they reverberate. This makes each one different.

Perhaps this is another "rebranding" that Kirby himself can reveal when he's ready to change his beliefs, yet again:

The trouble comes about when the Crystals are judged by medical and educational personnel as having "abnormal" speaking patterns. It's no coincidence that as the number of Crystals are born, that the number of diagnoses for autism is at a record high.

One other note, on where the "Indigo child concept" was born:

"The Indigo child concept was first publicized in 1999 by the book The Indigo Children: The New Kids Have Arrived, written by the husband-and-wife team of Lee Carroll and Jan Tober. Carroll insists that the concept was obtained via conversations with a spiritual entity known as Kryon."

*For clarification, because my husband asked this question and I don't want anyone else reading this to get confused: The spiritual entity involved in the creation of the "Indigo child concept" is known as "Kryon." Not a "Klingon."

Is Jenny Really An Autism Mom? (Part 3)

On Autism and Diagnosis:

A final point on whether or not Jenny's son truly did have autism is on how his diagnosis came to be. Apparently, he was diagnosed by the "best doctor" in town or some such. Even the best doctors can make misdiagnoses, and even mistakes. Part of this depends on the information he is receiving, either from the parents or from other physicians. The other part is the doctor's own experiences through his education, training, and with other patients. Evan may very well have appeared autistic in this physician's office. He was lining objects up and flapping. With such an observation, combined with a history of speech delay and seizures, it's not hard to see how the diagnosis of autism could be reached.

However, I feel it's important to note that this was a second opinion. Ms. McCarthy wasn't happy with the epilepsy diagnosis she had received from a previous doctor. It's possible that autism clicked with her (she herself says "this man is right," see below), an autism diagnosis made more sense to her perhaps. It was a diagnosis that tied up those loose ends she was concerned about (the stimming, the language loss, etc.). I know we felt a certain sigh of relief when given particular diagnoses for our daughter. It was a "oh, now I get it" reaction. There was information to be given, some resolution, and sometimes more resources. It may seem odd to people who don't have children with health or developmental issues, why a parent would feel an ounce of relief from a diagnosis. But, as a parent, we often see a new diagnosis as something that wraps our concerns up in a nice, neat package. It almost makes the issues we are facing easier to consume and easier to understand.

From Jenny's interview on Oprah:

Two days later, a doctor diagnosed Evan with epilepsy. "[The doctor said], 'There's got to be someone with seizures on your side of the family.' I said, 'No, actually I know every branch. I know what's going on. There's nothing. No one [with] epilepsy," she says. "And they discharged us." Jenny says every instinct she had was telling her that her son was not epileptic—so she went for a second opinion. After spending 20 minutes with Evan, a neurologist gave Jenny what she describes as a devastating diagnosis—Evan had autism. "And boy, my mommy instinct said, 'This man is right,'" she says.

I realize there are doctors so familiar with autism, they can apparently look at a child and give a fairly accurate diagnosis. That being said, do you want a "fairly accurate" diagnosis for your child, or a diagnosis based on hours of observation and information gathering? Our daughter had been followed by a neurologist for almost 3 years before we went for the official autism evaluation. She already had many diagnoses (apraxia, sensory processing disorder, developmental delay, static encephalopathy, and so on), and was receiving therapy for her needs. However, it was apparent her social and behavioral issues, combined with everything else, warranted an autism evaluation (to give us an answer, and to assist her in receiving proper school services, etc.).

With a rather hefty folder filled with records from our child's pediatrician, multiple specialists (including neurologist and geneticist), and her therapists, we headed into the psychologist's office. This psychologist was one of two "autism experts" in our area. She is one of those who can look at a child, and fairly accurately say autism or not. Still, she insisted on asking my husband and I questions, have us fill out surveys (together and separate, with her and at home), reviewing our child's extensive records, and interacting and attempting to play with my child. This was clearly a responsible thing to do. She was better able to educate us on autism (and specifically what that meant to our daughter), intervention and school recommendations, medications, and so on.

We went for 3 hour-long appointments, over the course of 3 weeks. And then, at the end of the month, we went back for our last appointment. We were handed a multiple page document, and the doctor reviewed her diagnosis (moderate autism, with a history indicative of moderate to severe autism). I have to say, I'd prefer to commit to 4 hours of testing and discussing to come to a diagnosis than 20 minutes of observing and asking questions.

Since a third opinion was never sought, it seems, we can't know what yet another physician would draw from Evan's case. Would the next doctor feel that his severe seizures had affected his language, and that perhaps he did have other neurological manifestations? We can't say for certain, but again, it could be a possibility.

*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 2)

A Look At Auditory Processing, Allergies, and Autism:

Aside from, or in addition to, the possibility of epilepsy being the cause of developmental delays (and hence leading to a wrong diagnosis of autism) in Jenny's son, we can also look at auditory processing symptoms being similar to those of autism. In addition, a child suffering from food intolerances and/or allergies can have behavioral issues (or what looks like behavioral problems, from pain, discomfort, etc.). In recent interviews, Jenny has said her son continues to have some "auditory processing" issues.

More on Central Auditory Processing Disorder:

Early Signs & Symptoms:

* Difficulty following verbal directions.
* Echolalia (repeating back words and phrases without comprehension).
* Re-auditorization (repeating back what was heard, and then showing comprehension).
* A child who says "huh" or "what" and requires more repetitions of verbal input messages.
* Speech sound discrimination difficulties, especially in noise.
* Highly distractible/active.
* Unintelligible speech, but with adequate vocal inflection and gestures.
* Difficulty with memorizing names and places.
* Difficulty repeating words or numbers in sequence.
* May have speech or language "delays."

Nearly all of the CAPD symptoms can be seen in autistic children (specifically those with speech delays or language impairments), but again, there is more to the diagnostic criteria for autism than the symptoms listed for CAPD. Doctors really need to use caution when they throw out an "autism" diagnosis, especially when language and speech disorders can mirror symptoms of ASD's. I've seen this type of "warning" on speech apraxia websites, cautioning that there are some similarities with autism. So, is it possible that Jenny's son's proper diagnosis could be CAPD, with epilepsy?

With regard to allergies or food intolerances causing or worsening behavioral or psychiatric issues, we can look at this study (Untreated Celiac Disease and Development of Mental Disorders in Children and Adolescents):

The two adolescents described in these cases had suffered from episodes of major depression and other mental disorders before receiving a diagnosis of CD. The subject in case 2 had severe psychiatric symptoms years before adolescence. Soon after commencement of a gluten-free diet, coinciding with a decrease in circulating IgA antiendomysium and IgA antitransglutaminase antibodies, both youngsters considerably improved without any specific psychiatric treatment, and both remained in remission for at least 1.5 years of follow-up. Although the possible role of unrecognized psychosocial factors in explaining the remission cannot be excluded, it seems likely that in these cases major depression and severe behavioral problems, along with their improvement, were causally related to CD and its treatment with a gluten-free diet.

Since unrecognized CD may predispose the sufferer to serious mental disorders and behavioral problems, it should be taken into account in differential diagnosis in all age groups. The mechanisms involved in the etiology and pathogenesis of mental and behavioral disorders related to CD, and even to celiac-type gluten sensitivity, remain unresolved.

Certainly not direct proof of food intolerances (or in this case specifically Celiac Disease) can lead to or cause psychiatric disorders, but enough information to consider the possibility. So, again, if Jenny's son is a child with epilepsy (and associated delays) along with CAPD and/or food intolerances, all of that could add up to what looks like autism. It also would further explain this so-called "recovery" and why such improvement (apparently in speech and behavior) supposedly followed a switch to the GFCF diet (keep in mind, it may have been the epilepsy treatment helping the speech).

JUST MORE HYPOTHETICAL FOOD FOR THOUGHT...


*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Is Jenny Really An Autism Mom? (Part 1)

A Look At Epilepsy, Speech Delay, and Autism:

THIS IS ALL HYPOTHETICAL FOOD FOR THOUGHT. Jenny proclaims herself as the "Autism Mom" who speaks for all other "autism moms" and the "autism community." But, what if her son never really had autism? It's a fair question to ask, as Jenny herself has said in recent interviews: neurologists who see him now for epilepsy say he never had autism. What if, instead, he had a culmination of other disorders, that appeared similar to autism? Suppose a physician gave the "autism" diagnosis without really absorbing this child's medical history? Then what? Can anyone really consider Jenny an "autism mom" or as someone to "represent" anyone in the autism community? She has made quite a bit of money off of autism and out of promoting "recovery" for autistic children. Perhaps that is why she dismisses the neurologists who now tell her that her son was never autistic?

Okay, let's go back and review some medical history (as we know it, by Jenny).

We know that Jenny's son has epilepsy, he had at least 2 very serious seizures (to which I do absolutely sympathize with Jenny, I have seen my daughter turn blue, foam bubbling out of her mouth--those seizures are horrible to witness and scary as hell). Seizures, especially one that causes a child to go into cardiac arrest can cause neurological damage. Perhaps, that damage resulted in some "autistic-like" symptoms? It is very feasible that the epilepsy led to speech delays. Look at this study (that is very similar to the story of Jenny's son):

A 2-year-old boy presented with an early form of benign partial epilepsy with centro-temporal spikes (BCERS) and a severe speech delay. Family video analysis revealed an early regression of babbling and stagnation since the age of 12 months. Complete recovery occurred with anti-epileptic treatment. The deficit corresponded to a transient speech apraxia attributed to an epileptic disconnection of networks coordinating speech articulation. This observation is, to the best of our knowledge, the first demonstration that delayed emergence of language can be due to an epileptic dysfunction interfering with prelinguistic skills and therefore mimicking a developmental delay.

Bold for emphasis by me, specifically the regression, stagnation, and "recovery" following proper seizure treatment. Interesting when we know that Jenny's son is/was treated for seizures (have not been able to confirm whether he is still on a seizure treatment). Also important to note, not every seizure medication will work for every patient with seizures. It is often trial and error until the correct medication and dose is found. Some patients have to try several drugs before properly controlling, and therefore treating, their epilepsy.

Jenny's son had adverse reactions to at least one seizure medication, so who knows how long it took for the anti-epileptic treatment to begin working (and when his "recovery" began). It's also unclear if her son still takes seizure medication. On CNN, she did say that "seizures, we still worry about" Now any parent with a child who has seizures, especially those as severe as Evan's, understands that their child requires epilepsy medicine (typically for at least 1-4 years following the last seizure, depending on type of seizure(s) and patient's history). So, certainly, her son is still on medication--if she, and the neurologists, still worry about seizures (again, especially with a history of such severe episodes).

I've seen many statements about Evan being misdiagnosed with epilepsy. As if, the autism itself explained the seizures, and erased an epilepsy diagnosis. It is true that a percentage (around 30%) of autistic people have seizures, but seizures are not part of the criteria for autism. My daughter has a seizure disorder and autism, adding "autism" to her medical records did not make her seizures an unnecessary diagnosis. I wonder why it seems Jenny is quick to say that the epilepsy was a mis-diagnosis, but the autism was an accurate one?

Moving on, epilepsy occurring at the same time as speech delay in young children is not that rare. And, it's well accepted that young children with speech delays can present similarly to children with autism. There may be some red flags in those children. Physicians need to be very skilled in diagnosing autism, and also in pediatric epilepsy and speech delays, in order to help differentiate between the them (and understand what a combination of any of those might present as). There is a definite link between some types of epilepsy and developmental delays:

Certain types of epilepsy can be linked with learning, behavioural and speech and language difficulties. This is increasingly recognised and the risks are greater if epilepsy occurs before 2 years of age. Parkinson found that from a small study of children referred for assessment of their epilepsy, 40% had undiagnosed language impairment of varying degrees of severity.

Epilepsy can cause temporary loss of function in one or more parts of the brain. If these parts are involved with understanding, organisation and communication processing difficulties in using language can result. These difficulties can be severe, causing general delay in language development or a disordered pattern of language abilities.

The following epilepsy syndromes have associated language difficulties. They include:

• Landau Kleffner Syndrome
• ESES or Tassinari's Syndrome - now called CSWS (Continuous Spike Waves of Slow Sleep)
• Lennox-Gastaut Syndrome
• Temporal Lobe Epilepsy

Sometimes the disability can be extremely subtle - such as high level language impairment disorder. They may have pragmatic difficulties and, therefore, will not have a clear understanding of language use. They can appear socially inept and can misread others' intentions. In these cases the child may exhibit bizarre or socially unacceptable behaviours or the child's language may appear to be 'odd' in an inconsistent way. They may have poor turn taking skills, excessive or restricted topic maintenance, and poor skills in greeting, questioning, seeking the attention of others, describing or commenting.

Some children may have episodes of slurred or disfluent speech. These episodes can occur suddenly and be unconnected with stress or other obvious 'trigger' factors. They can be caused by changes in medication and/or as a result of epileptogenic activity i.e. electrical activity in the brain which does not necessarily manifest itself as an obvious epileptic attack.

It appears there's more than just a little evidence out there to suggest a child with epilepsy can also have developmental delays (specifically in areas of speech). It's clear that children with developmental delays can sometimes have "autistic-like" symptoms, and can also have sensory integration issues (which can lead to stimming and restrictive or repetitive movements, play, etc.). I would dare to say that there are more than a few children out there who were at one point diagnosed with autism, when in fact, they had epilepsy along with developmental delays.

Lastly, Dr. Fernando Miranda pushes for more EEG's and MRI's to be a part of the autism diagnosis process. He has apparently found children at one time diagnosed with autism to have various epilepsy disorders (and more than likely, not autism). I for one am thankful that my daughter has had an MRI and several EEG's, the information gained can sometimes be invaluable--both to rule out or rule in various conditions.


*Disclaimer: I do not have any personal knowledge of Jenny McCarthy or her son's medical history, other than that made available to the public (via media outlets, et al). These are simply questions I feel worth raising, and ideas worth investigating.

Jenny McCarthy: On The Record

Well, I have to say I'm rather disappointed by this interview with Jenny McCarthy. Greta Van Susteren is typically (as far as I have seen) a good interviewer, challenging her guests and asking tough questions. This was nothing more than a fluff piece. It was a "autism is horrific" and then Jenny spatting her lies. Too bad.

Some of the falsehoods:

*That this rally was "for people to see the true faces of autism"
*11 shots contain mercury, again suggesting your child is receiving 11 shots with mercury
*Conspiracy theory: government is lying, the same old story from these folks
*"too many too soon" an idea that remains completely unproven
*Jenny says she uses a "great analogy" for autism, it's like "getting hit by a bus"
*Hannah Poling...government has conceded that "autism was triggered by vaccines" UM NO!
*8,000 people from across the country

Some rather questionable statements about autism from Greta:
"terrible for the child and the family if you're on the bottom range"
"how horrible"
"completely disruptive to the family"

To which Jenny asks us to imagine "having a perfect child" and "then all of sudden that child is gone before your eyes." She also says many mothers liken autism to having a spaceship come and steal your child. I absolutely detest those statements. How could a parent say their child lost their soul? Further lack of respect toward autistics.

Jenny continues to say, "us moms aren't treating autism", they are treating a "vaccine injury." First, let me say, I'm glad to hear it's the moms who are "treating" their child's "condition." Okay, fine. Your children have a "vaccine injury," mine and the rest of us in the "autism community" you claim to represent, our kids have autism. So, go rally for your so-called "vaccine injuries" and leave our children alone! You are only harming the future for our kids, for those who won't "recover" and doing nothing to help autistic children, teens, or adults.

Jenny confirms what I questioned in my recent post: neurologists are now saying that her son never had autism. He is not autistic. She argues this by saying he was diagnosed by the state of California and doctors (at UCLA, I believe). Well guess what Ms. McCarthy? Doctors make mistakes. You'd think the one who claims the government and doctors are "poisoning" children would be the first to think that doctors might have messed up. Really though, many doctors will tell you that an autism diagnosis at a young age (I believe Evan was around 2 1/2, more on this in an upcoming entry), may not remain accurate as the child gets older. For that precise reason, our neurologist advised us to wait for the evaluation until after our daughter was 3. She already has several neurological diagnoses (and recognized developmental delays), and he always assured us that regardless of diagnosis, we were doing all the right things. Again, I will write more on this shortly.

The interview (rather brief) ends and they give a statement by the AAP.

From earlier:
Okay, due to breaking news, the Jenny McCarthy interview by Greta Van Susteren is being a bit delayed. However, on the GretaWire blog, you can add comments now and throughout the show. Thus far, I've seen many "I love Jenny & finally this message is getting out..." and so on. Make our side heard!

Here's what I've written so far, I imagine I'll be adding more as the interview & so on airs:

Honestly, why should a woman who admits she's never even met an autistic adult be the chosen representative for autism? She does not represent me (and yes, I AM an autism mom). My child was born with autism, she never had any reaction to vaccines. She has not improved with any special diets, and due to medical concerns, pursuing the GFCF or DAN! Protocol is not feasible (nor could I see shoving 20 pills down her throat along with injections, none of which is proven to be of benefit).

So what is Jenny doing for my child? She won't "recover," she won't be the child I can parade in front of others getting credit for "fixing" my child. My daughter is precious, and yes we have ups and downs, and life can be extremely rough--but first and foremost she is my child (not kidnapped or soul-less), and I love her. The public perceives autistics (due to these cure & recovery message) as unteachable, unworthy, and even unlovable. They are not respected--wherever they fall on the spectrum. I fear for what the future brings for her. Will society change by then?

Currently, there are extremely limited adult services (including independent or semi-independent living situations, vocational or career programs, etc.) and help for teens is difficult to attain as well. The public views my child and others like her as damaged, not worthy of civil or human rights, something to be gotten rid of. What is Jenny and Jim doing to help change that???? Have they done anything incredible to raise public awareness on this dire need? I fear for when my daughter reaches adulthood--what services will be there for her? Yes, she will make progress, as she continues to do so. But, we still don't know exactly how much assistance she will need. What happens when we can no longer take care of her? That is what keeps me up at night.

I refuse to waste my time, and my daughter's, by believing in some PR guy's claims that the government is "damaging" our children via vaccines. Do your research, read REAL scientific studies (done across the globe), and realize there is ZERO proof of any link between vaccines and autism. Even in the case of Hannah Poling. If you do not understand the science of that particular case, do not even bother discussing it. The government did not concede that vaccines gave her autism. Also, learn the difference between causation and correlation.

I advise you too, read the Omnibus proceedings of the last few weeks--then let's see how much faith you have in the DAN! docs' "heavy metal screenings" and "treatments." It's amazing what these docs must admit while under oath.

FYI: Jenny On Fox Tomorrow Night

Jenny McCarthy will be on Fox News' On The Record with Greta Van Susteren tomorrow night (10pm E/9pm C).

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.

The Whole Green Mess...

I've been busy lately. You can tell, as I've been absent from my blog. I had even forgotten what today was. We were headed to Speech Therapy when the ABC radio reporter issued a brief statement about the rally. I called my husband to see if he had seen any coverage on the T.V. This evening, I searched and searched, but could not find a single morsel. The majority of the coverage was on the presidential race.

This particular clip of the whole "rally" seemed utterly surreal (it's from ET Online, go figure). That's all I'll say, you judge for yourself.

What I heard Jenny say was how 10 vaccines still have mercury in them (in the guise of thimerosal, Big Bad Pharma at it again). She said how it's right there on the FDA website. I had to immediately check it out (TEN vaccines??!!??). Well, this is, I presume, the page she refers to. I'm baffled. It's late, so I could be wrong...but I don't get how it adds up to 10. Well, I take that back. Yes, there are several vaccines that contain trace amounts of thimerosal (which, would then contain trace amounts of mercury, so in the vaccine, you are getting trace amounts of trace amounts of a preservative). However, it's declared as if your child is getting TEN vaccines with mercury. No, that's not the case. If you look at Table I, you will see that of the "vaccines routinely recommended for children 6 years of age and younger," only one particular brand of DTaP (Tripedia) contains trace amounts (≤0.3 µg Hg/0.5mL dose) and that the other vaccine is for influenza (which, has thimerosal-free versions, FluZone thimerosal free and FluMist). Both vaccines are available in thimerosal-free formulations. There is a second table, with a list of additional vaccines, such as Japanese Encephalitis (containing 0.007%), that our children do not typically receive. On that table, the highest percentage of thimerosal content was 0.01%. Startling. I thank Jenny for sharing such a valuable resource with all of us.

There was also this picture, courtesy of the Chicago Tribune. Now, I'm all for showing affection for your sweetheart. And, I love my husband very much. But I can state with 99.9% certainty that if we were ever at a rally (say for funding for programs aimed toward autistic teens and adults), we would not be making out. Sure, we may hug, but a passionate kiss? Leave it at the hotel room people. This seem to be a theme for Jenny, being less than professional (ex. shouting bulls**t on Larry King Live) while on this "crusade." You are celebrities, people are taking your picture, act accordingly--if you want your message to get out. I wouldn't want an image like this to be one of the first few listings on Google (c'mon, Jenny, you have your Google degree, don't you?) for a rally that was of the utmost importance to me. Just my two cents, a little advice for Jim and Jenny.

It also appears that the turmoil is bubbling over with regard to Jenny's public messages on vaccines (that she is NOT anti-vaccine at all, just for safer, more spaced out, yada, yada, yada). The anti-vaxers are angry with her, and upset that the rally today was apparently not open to those preaching a total anti-vaccine message.

To be honest, the ABC link I mentioned previously is the only substantial mention or article I have found. For the most part, the media is clinging onto the celebrity factor (and even more, the celeb-couple factor). This may have been a big, fun story for ET and Extra!, but as for making a real impact and being treated as a serious issue, it seems to have missed its mark.

Apparently 8,000 people showed up today. I'm not sure if that is more or less than what anyone anticipated. I for one was a bit appalled at the message to parents about how to do whatever they can to get to D.C. Borrow from family, do fund raisers, etc. Here's the thing, the majority of us "autism families," don't have bundles of extra cash stowed away to fly to a rally (or for anything else!). I could never, would never, ask anyone for money so that I could attend a march (of any sort). My family would surely think I had gone over the edge entirely. Please give me money so I can fly to D.C. for a rally. Yes, I know I have medical bills. Yes, I know my child has therapy. Yes, I know we may need to hire an advocate to get better school services. But, this is really important! WHAT??? Outrageous! Again, I see a disconnect from celebrities and the rest of us. Flying or driving anywhere these days is awfully expensive, I can think of a hundred ways that money may be better spent for a family like ours (and, like many "autism families," I suspect).

Edited to add: From reports, it appears that 8,000 figure may have been rather inflated. It seems the numbers were more like 500-1,000 people in attendance (and, apparently, half of those were children).

Is it autism--or isn't it??

This one from ABC News especially caught my eye. The article itself isn't anything earth-shattering, but I was impressed by the link to the National Network for Immunization Information on the bottom of the article (above the TACA link, and in bold no less). Kudos to ABC for being balanced on this. What really struck me, was the video of Jim and Jenny's interview from Good Morning America. This particular part, when Diane Sawyer is narrating how Jenny's son "recovered" from autism:

"but doctors now say he was likely never autistic to begin with. Undaunted she remains an advocate fighting for Evan and other children..."

I wonder--is it doctors that ABC consulted with for the story, or physicians who are familiar (as in face to face) with Jenny's son? I think we are owed clarification on this. This idea, of children being wrongly diagnosed with autism is something I've visited before in the comments at Autism Vox here (and my other statement). I think there are children who have dietary sensitivities and allergies, who have some autistic-like (or ADHD-like) symptoms. Perhaps they get prematurely diagnosed, when really the issue is something else. Now, I will say this, in an environment of acceptance and love, a premature diagnosis doesn't necessarily do any harm to the child. I don't think there is any child who would not benefit from, say, speech or occupational therapy, etc. Harm can occur, however, when parents (and Jenny is not alone on this one, far from it) claim that this diet or this treatment "recovered" or "cured" their child.

As in the case of Jenny's son, he apparently had significant changes when the GFCF diet was started. Perhaps his issue was sensitivities to foods and gastrointestinal problems. My daughter has had her fair share of G.I. issues. We have managed them rather well, our physicians are incredible. Had we not been on the ball with her tummy troubles, or had our doctors made wrong diagnoses, I imagine our child would be in tremendous pain much of the time. Luckily, most of her issues were addressed before she was two. For a child who cannot verbalize at all, or only limited, how does that pain get expressed? Through screaming, self-injury, etc. If a child has a speech delay plus gastrointestinal issues, this could very well look like autism.

But let's make one thing clear: having autism and having something "else," are two very separate things. There are children who may exhibit autistic-like symptoms or signs, as well as signs of ADHD, etc. when really there is a food intolerance or other sensitivity. For those children, diet alterations will make all the difference. For a child with autism, you cannot assume that dietary changes will add up to speech or any other drastic changes, let alone "recovery." I've yet to meet one parent in real life who has said "we started the GFCF diet, and weeks later my child was doing X." I have heard some parents say they think they've seen some small positive changes, and in one case, a mother felt her child's sensory issues were "a little better."

I'm not bashing the GFCF diet. I've known several people with Celiac Disease who are thriving due to it. I think it has its place. I also feel that if your child and your family can stick to such a diet, and if some positive comes from it, then go for it. Strangely enough, a lot of our foods are gluten-free (we shop at Whole Foods and such, these cookies are awesome!). However, it so happens that my youngest will not consume any of those foods (she eats about 5 different foods regularly, that's it). A few of the parents from my daughter's school also say they too are unable to follow the diet. Their child, like mine, may eat only one fast-food brand of chicken nugget, or a specific brand of frozen pizza, etc. Some of us have worked for years to get our child to eat anything resembling a meal. For us, if you simply present a new food on our daughter's plate, it will send her into a rage. She barely eats as it is. So, if anyone can realistically offer how to switch her to GFCF, be my guest. But, for some, if not many, of us, this diet is not feasible. And so I beg of you, do not point your finger saying we are failing our children by not following the diet--or any other "treatment." As the saying goes, walk a mile in my shoes...

Let me also say this--I'm happy that Jenny's son had so much improvement once he began the GFCF diet. That is fabulous. I hope he continues to do as well as he seems to be doing. I don't think there is a single parent out there who wouldn't love to give their child certain foods and within two weeks have that child be speaking. The world is a nicer place when you abide by what they have declared as "normal" and "typical." Don't we all want our kids to have an easier time in society? I have never and will never seek a "cure" for my child. That's not to say we haven't worked tirelessly on providing her with all she needs, on keeping on top of the school to ensure they are helping her, and seeking out the best (for our daughter) doctors and therapists. We don't want our child to have meltdowns, to gag at the mere sight of a certain food, to injure herself (or others), etc. And, yes, if it was as simple as altering our pantry, and my child would not have the struggles she currently has, I'd jump at that.

But my daughter's "autistic-like" symptoms are actually autism, and that's a major difference here. She isn't acting a certain way because of a belly ache, or allergies. The reality is that a lot of our kids are square pegs (and we embrace every side--even those sharp edges) and society constantly tries forcing them into round holes. For many of us, the answer isn't in diets or supplements, it is in parenting and working with our child, loving them unconditionally, and perhaps along the way, even rounding those corners just a tad. But more importantly, it is our duty to accept who they are, and work to make this world a friendlier, maybe even more square, place for them.

I am saddened that Jenny's preachings on autism and recovery make my battle (the one of acceptance for those on the spectrum and for the creation of programs for autistic individuals, especially adults) much harder. If you are going to represent the "autism community," let's be 100% certain your child is indeed autistic first though. And, I would also caution, as I have before, that when we describe an autistic child as "recovered," there comes great responsibility. Responsibility for those who never "recover" and the issues that stem from that (at best you are left with parents feeling like they messed up, kids feeling that they're never quite good enough). Responsibility for your child who you claim to be "recovered" when in a few years may no longer be able to wear that label. Many parents will tell you that the teen years can be very difficult for autistic kids. So, the child who seemed to be "doing so much better" can suddenly be a child requiring much care and services as a teenager. There's just a lot of burden that does, and should, come with announcing your child is "recovered," and especially at such a young age.

Jenny's New Book

I was checking out Amazon.com when I stumbled upon Jenny's new book. It is entitled, "Mother Warriors: A Nation of Parents Healing Autism Against All Odds," and is available for pre-order, with a release date of September 23, 2008. Mother Warriors? Really? That title is hefty, it's sure to raise more than a few eyebrows. I assume Ms. McCarthy got the "Mother Warriors" from Oprah. On her show, she said to Jenny and Holly Robinson Peete (and perhaps to all us "autism moms" or maybe just the ones who are fighting autism?), "You're mother warriors is what you are." I've heard Jenny use the "W" word before, but I'm not sure if it was before or after her appearance on Oprah.

I have no doubt this will be another bestseller. Good for Jenny and TACA. Bad for us. I've written on my concerns of such a book previously. I'm curious to see what the criteria for being "healed" from autism is? Is there a set of tests or surveys? Are the families profiled subjected to testing, if so with what and by who?

Bigger than my doubts on what "recovery" from autism is, is the issue I have with this mentality. The idea that "recovery" is within every autistic child's reach, and that we as parents (or more often, as mothers) are staring down some doom and gloom timeline to "fix" our kids. We have seen parents who feel they have done all they were "supposed" to do, they had tried everything, and still had not gotten "rid" of their child's autism. Children have been murdered by their parents (and other carers) or died during chelation and some of these other so-called treatments. This idea that your child needs to be cured, that it's like they've been "hit by a bus," and that we should try various treatments (keeping in mind that like chemotherapy, these treatments won't help every child) until they are "recovered," can be very dangerous. Nobody, especially the media, wants to tell this side of the the cure autism movement.

Celebrating only the autistic children who are able to supposedly be "healed" or "recovered" only devalues the life of autistic individuals. It distracts society from the dire need for adult services, and blurs the reality that autistic children do really grow up to be autistic adults (yes, Jenny, once again--there ARE autistic adults). It also further burdens parents who do not see the same progress in their child--especially if they bought into the propaganda and tried all those supposed treatments. This growing mindset, and a book such as this, can be very dangerous.

More Mito Docs Speak...

Finally. More mito docs are coming out of the woodwork (please read Mitochondra and vaccines - the science), and speaking out about the Poling case (even those directly involved in it). And, let me back that up by saying these physicians are highly-respected, very intelligent, experts in their fields. They spend their days and nights caring for patients with mitochondrial disease or evaluating people for possible mito abnormalities, performing studies, reading other physician's reports, and researching, researching, researching. These doctors eat, sleep, and breathe mito.

Why any parent would prefer to try and gain understanding of the complexities of mitochondrial disease (something which is a difficult task for most pediatricians and other docs to do even) from a P.R. guy, or a lawyer, or anyone other than the mito experts is beyond me. If your child has a broken bone, would you take medical advice from your stock broker? Now, your stock broker is probably very intelligent, nicely groomed, and well-spoken, but again, wouldn't you rather ask his opinion on the markets than medicine? So, why are so many parents listening to David Kirby and others like it's the gospel?

Make an appointment with Dr. John Shoffner, or Dr. Salvatore DiMauro, or Bruce Cohen, to name a couple. Let them explain the ins and outs of mitochondrial disease. Ask them if vaccines cause it. Ask them what they think of the outcries from those on the anti-vax side. Then, and only then, can real discussion on this topic begin. When you have THE experts on mitochondrial disease, saying that vaccines didn't cause mitochondrial defects in Hannah Poling, what is there to question?

I suppose the anti-vax brigade will claim that "well, they are doctors on the CDC's payroll" or some such nonsense. Take your head out of your asinine conspiracy theory for just a moment. If the running idea is that all these docs are corrupt, out to make a buck, and covert agents for the government--wouldn't they be the ones saying, "yes, kids with autism probably all have mito disease, come get tested by me."

Talk about rolling in the dough. To get a good and thorough evaluation of mitochondrial diseases and other genetic abnormalities, you are easily looking at $20,000 - 40,000. That is PER patient. If every child involved in the omnibus gets such thorough evaluations, these doctors will be millionaires in no time. So, why would these doctors state that vaccines don't cause mitochondrial disease, and therefore, vaccines do not cause the autism (or autistic features) that can sometimes occur along with mitochondrial disease?

They aren't doling out shots in their clinics, so they're not getting paid by Big-Bad-Pharma to be spokespeople for the vaccines. Why would they "cover up" a link between mito and vaccines? For no reason, that's why. There is no link. These physicians have high ethical standards, and if it was found that vaccines indeed caused mitochondrial disease, they would be the first to say it. They are striving to find a cure for mitochondrial disease. There is no reason for them to deny a possible cause to a disease they are fighting to get rid of.



**Hats off to Kristina & Kevin for their coverage on this ever-developing story!

Mito-Autism Study

Okay, I'm a couple of days late on this, but seeing as I've written quite a bit on mito, figured I must add it to the list. I've included the parts which I feel have been overlooked by many who have jumped on this study, declaring that MANY autistic children MUST have mito.

Again, the whole fuzzy math thing--read each word and realize when the statistic of 74% and 78% are concluded, that is among 41 children who were SUSPECTED of having mitochondrial disease. These were not just a random sampling of autistic children. These were children who more than likely had other health issues, along with abnormal lab results (which led them to Shoffner and these further studies).


Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology

The statistics many are reading and running with:

Here at the American Academy of Neurology 60th Annual Meeting, a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

Again, I can't state it enough: this is NOT a random sample of autistic individuals. These are children who were already suspected of having a mitochondrial disorder.

More:

"Obviously, autism is not a single condition but a true spectrum of disorders. There are many ways in which the genes can go awry, and our hope is that this study will open the door to a greater understanding of at least 1 subset of this patient population with metabolic and enzymologist changes," he said.

I'm curious to see if Dr. Shoffner feels that such changes in genes comes from the parents, or via vaccines, environmental toxins, etc. as Dr. Poling & Kirby promote. His point of autism being "a true spectrum of disorders," and that this is only "1 subset" of patients, would lead one to believe he is not ruling out genetic factors (ala Jenny, who seems to feel there are zero genetic causes for autism). So, again, for the anti-vax group, this is not a definitive finding in their favor. Not by a long shot.

However, he added, further research in unselected populations of autistic patients is needed to confirm these findings.

Exactly.

Lisa Jo Rudy makes some great points on the significance, if any, of this study.

A Measles Primer For Jenny

"Give my son the measles. I'll take that way over autism any day."

"In a heartbeat," she adds later on.

Perhaps Jenny hasn't used her Google PhD to look up measles yet. Maybe she could ask her own pediatrician, Dr. Jay Gordon. On his own website, you'll find this:

Measles still causes a million deaths worldwide even though a very effective measles vaccination program in the United States has just given us our third year in a row with fewer than 100 cases of measles in our country.

Has Jenny ever read about measles in developing countries? This blog, Nigeria Health Watch, discusses another outbreak there in December 2007. The author asks, "How many children will have to die from measles in Nigeria?" After reading that entry, Jenny may want to visit KidsHealth where she can read this information:

A child who is diagnosed with measles should be closely monitor for fever and other symptoms to detect any complications. In some cases, measles can lead to other health problems, such as croup, and infections like bronchitis, bronchiolitis, pneumonia, conjunctivitis (pinkeye), myocarditis, and encephalitis. Measles also can make the body more susceptible to ear infections or other health problems caused by bacteria.

My child is prone to croup and bronchitis, she has been hospitalized for RSV, and for a bacterial infection called pseudomonas (which she caught during a hospitalization for surgery). I can't imagine ever saying I'd prefer measles, or pseudomonas, to autism.

Further information on measles, and the importance of vaccines, Jenny may want to visit the World Health Organization (WHO). WHO offers some startling facts:

• Measles remains a leading cause of death among young children, despite the availability of a safe and effective vaccine for the past 40 years.
• In 2006, it was estimated that there were 242 000 measles deaths globally: this translates to about 663 deaths every day or 27 deaths every hour.
• Vaccination has had a major impact on measles deaths. Overall, global measles mortality decreased by 68% between 2000 and 2006. The largest gains occurred in Africa where measles cases and deaths fell by 91%.

Some people need images, to let it all sink in. Here is what a "measles eye" looks like. And there's these pictures too:


I hope many will come forward and speak out against Ms. McCarthy, and this outrageous statement she made. I also wish Jenny would study up on measles, and realize how ridiculous she is to ask her son be given measles, any day, over autism. It is ignorant, and even offensive (to those who have suffered and died from measles, to the 27 mothers who every hour lose their child to this disease, and to autistics who are here, alive on this earth).