Another Senseless Tragedy...

People who prefer to find blame in vaccines, often look at us who embrace neurodiversity as being unrealistic. We even are accused of not having our children's best interests in mind. First and foremost, after years of studies continue to find no link between vaccines and autism, why is there still a debate? Why is anyone wasting their breath on this? All the money and media mention--for what?

Those who hold onto the hope of a cure for autism and support pouring millions into such research, also look at us in this same light. Let's be brutally honest here: there will never be a true "cure," not in the traditional sense of the word. What will come in the next several years, most likely, is a prenatal screening for well-documented "autism genes" or other markers for autism. Then, just like we've seen with Down Syndrome, pregnant women will be counseled to abort their fetus based on the positive autism test. A secondary "cure" would most likely be a combination of medications and supplements. There will never be a "magic pill" or procedure to "rid" someone of autism.

So, with all of that in mind, these same people continue to attack those on the ND side of things. We are called every name in the book. There is plenty of confusion as to what Neurodiversity means (as well as what Autism awareness should be), and what so many of us are fighting for. For me, and for most of the parents I know, we are fighting for better services for our children. We want programs created and funded now for teen and adult autistics. We demand better teacher training, employer seminars, first-responders' awareness on autism. We see a dire need for better options for autistics and their families: living arrangements, vocational and education programs, and so on. We also desire our children to be accepted by society, and at the very least tolerated in our communities. We want the world to embrace our child, and see all the gifts we see (for all our children, all over the spectrum).

Our concerns stem not only out of the love we have for our children, but from our fears that arise hearing about stories of abuse. Talk about intervention and treatments (that are respectful to autistics), yes. But how can any of us spend another minute blaming vaccines and promising cures, when our children are being abused, neglected, and killed?

Gabriel Poirier was nine years old when he was suffocated to death at his school. The details of his death are horrifying, and we yet to have all of the facts (like, why the teacher thought this was a viable option?). From The Gazette:

On April 17, Gabriel began to disturb his class with loud sounds. After being told repeatedly to calm down by a teacher, he was rolled in a weighted blanket. With his arms by his side, he was left on his stomach for over 20 minutes with only his toes exposed.

When the teacher went to check on him, he was "listless and blue in the face," the Coroner's report said. The teacher called 911 but the boy was already in a deep coma and passed away the next day in the Sainte-Justine hospital.

"He was a very gentle boy. Sometimes he was loud, but he was never aggressive or violent," Gilles Poirier, the boy's father, said today.

The parents' lawyer, Jean-Pierre Ménard, said vulnerable children like Gabriel need better protection.

"We're asking Minister Courchesne to implement a legal framework to regulate how these children are handled," Ménard said.

To think of how terrified Gabriel must have been as he gasped for breath, and the pain his parents are feeling--we cannot look the other way. My heart goes out to his family and friends. We must all learn from Gabriel's story, and not let his death be in vain. This is yet another wake-up call: our attitudes toward autism and autistics needs to change. What is it going to take to for all of us, autism parents and society, to come together and ensure such a tragedy never happens again?

In the words of Gabriel's father:

"Things, or action should be taken to prevent this, to never happen again."

For more information on how you can get involved, please visit these sites:

End Abuse of Children in Residential Programs: ACT TODAY!

APRAIS - The Alliance to Prevent Restraint, Aversive Interventions, and Seclusion

CAICA - Coalition Against Institutionalized Child Abuse

Warning: This Is Nothing To Laugh At

If someone feels they are an Indigo and they believe in this concept, that is one thing. I don't agree, but who am I to judge? However, if your beliefs are in any way detrimental to children, I take issue. Major issue. Here is the start of my concerns over the Indigo concept.

From here, it is suggested that "vibrations" will interrupt seizures, among other startling claims:

From vibrations sounded mentally that will interrupt seizures and stabilize brain function to attitude adjustments which free mind and body from long-standing, stagnation-producing concepts to the mental and emotional state of the comatose, the research is astounding and deserves to be noted, explored, and utilized more widely.

This site offers ill-advice for a febrile seizure:

If a seizure occurs, keep your child upright if possible and make sure she is breathing well. Reassure her. If she vomits, turn her on her side.

As a mother of a child who has seizures, this is awful advice. We have always been told to immediately put our child on a safe, flat surface (it would be impossible, at least during my child's grand-mal/tonic-clonic seizures to sit her up). If she begins to vomit, we turn her slightly on her side so she doesn't choke. Here is what NINDS advises:

To prevent accidental injury, the child should be placed on a protected surface such as the floor or ground. The child should not be held or restrained during a convulsion. To prevent choking, the child should be placed on his or her side or stomach.

I fear that there may be children out there who are not being properly treated for seizures (thankfully, it seems Jenny does take her son's seizures seriously and he is treated medically for them, but others may not be so wise). It seems likely that a child diagnosed with ADHD, autism bipolar, etc. whose parents feel s/he is a Crystal, may not be afforded all available help or treatments. There are people who, despite the best efforts (at alternatives like talk therapy), they need antidepressants or anti-anxiety medications. Without, they can be at risk for suicide or other negative outcomes.

As I read more into the Indigo concept, I couldn't help but draw even more similarities to Scientology. The dangers that have come from Scientology's stance against all things psychiatric have been widely, and tragically, documented. I came upon this, and it would seem that New Earth Magazine looks highly upon L. Ron Hubbard (founder of Scientology):

As an aside, L.Ron Hubbard of Scientology says that the more they can avoid the indoctrination of the school system, the better off they are in this world.

I think extreme caution has to be used when a group disregards medically-accepted diagnoses and treatments. They continually dispute scientific studies, promote conspiracy theories, and regurgitate the same information and sound bites over and over again. When this group storms Washington, D.C. and promotes an ongoing campaign to alter the (historically substantial and successful) vaccine system in the U.S., it is concerning. When this same group and its bombshell messenger employs tactics in an attempt to oust a government official, we need to take note. When they are given nearly free range on the media, to push their propaganda, we cannot sit idly by.

I've mentioned my concerns previously with regard to Ms. McCarthy and her message. Personally, I have nothing against her as a human being. I can relate to her, when she speaks of her son's seizures. However, the reality I face is that there is a startling lack of services for teen and adult autistics. My daughter is still rather young, and I do have time. However, I know plenty of other families and individuals who are in great need of those lacking services NOW. And, it's clear that unless major initiatives are made soon, we'll face the same issues with our daughter in a few years.

Jenny, despite what some will claim, has done nothing to further this effort. She continues the stigma that autistics have been "kidnapped" or her personal favorite, "hit by a bus." She focuses on recovery, telling the world she doesn't know of any adult autistics (so why bother creating any new programs?). Her loud cries that she would never vaccinate a child again and that she feels you should alter a proven vaccine program, is risky.

I worry for what the future will bring my child--will she have proper assistance? paths to independence? acceptance? And now I fear if I can protect her from outbreaks of whooping cough, measles, and the like. It's clear that this disturbing message will sink even further from my goals. We have no time to waste, to get programs created and funded for teen and adult autistics. This is all a huge distraction, one that unfortunately, all of the public is listening to.

You now know where this is headed. There is nothing funny here at all.

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 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.

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."

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.

Can We Agree On This: Your Child Does NOT Have Autism?

So, I've been milling over this for a few weeks now. I realize some of my friends may disagree with me on it. I wonder if we are able to get past this hurdle, that perhaps those who are working for adult services can move forward, with real change?

Can we agree that perhaps, there are forms of autism--or perhaps something completely else (not autism, but rather vaccine encephalopathy or something like that?), that are either caused by or worsened by vaccines? Perhaps there are a very small number of children who have something going on with their mitochondria or their immune system, and it makes them susceptible to autistic-like features post-vaccine (or illness, allergen exposure, etc.). For those whose doctors can prove their child is such a case, step aside. I am not for the rebranding of autism ala Kirby, but for cases like these, I say call what your child has something other than autism.

Step aside, stand on a soapbox with a name other than autism. I realize you parents are passionate about your children, and about how you feel your child "became" autistic. But, what you may not realize, is that all the time you are in the media, writing, and visiting message boards spreading stories of so-called recovery and cures for autism, you are taking away from our message. Those of us who have either tried biomed treatments and had no success, those of us who have been tested for and found a proven genetic link, and those of us who feel strongly our child was born autistic--we are fighting for rights and services for our children when they become adults and for the many adult autistics living in the world today.

Every time someone goes on television or writes an article, telling the world that autism is reversible, or that an autistic child can be recovered, you are telling the world that there is no need for adult programs. If the message is that autism can be "cured," then why would anyone want to support or create services for adult autistics? if we can make a distinction between what your child has (not autism) and what my child has (autism), we can all move along further toward our (very different) goals.

Ethically, I have many disagreements with how autistics are often referred to by those who are adamant about recovery. I am saddened that so many parents have great difficulty seeing the gifts that their children are, and I also fear that such beliefs can pull some over the edge. But, for the sake of my child's future and for the benefit of adult autistics, I would be willing to overlook this for now. Allow us to make real change for our children--those who won't recover, and who will need some type of support throughout their adult years.

I am so tired of trying to fight the massive media attacks on vaccines, the profiles of those who have "successfully recovered" their children, and all the viciousness I feel from those who disagree with me. I want to blog and discuss all areas related to autism. However, lately it is those who are attempting to rebrand autism and find blame that are consuming the autism world. I'd love to move past this. Changing the diagnosis is the only way I can think of to make progress.



This is what I wrote when I was feeling much more stressed (& and frustrated, among other emotions) the other day:


TO THOSE WHO FEEL THEIR CHILD'S "AUTISM" WAS CAUSED BY MERCURY, VACCINES, ENVIRONMENTAL TRIGGERS, AND SO ON:
CAN YOU START CALLING YOUR CHILD'S CONDITION MITO DYSFUNCTION OR VACCINE INJURY OR SOMETHING OTHER THAN AUTISM? THEN YOU CAN PACK YOUR BAGS AND LEAVE THE ISLAND. MY CHILD HAS AUTISM, NOT FROM VACCINES OR ANY OTHER ENVIRONMENTAL FACTOR. PERHAPS ONE DAY, IT WILL BE PROVEN THAT SOME CHILDREN HAVE AUTISTIC-LIKE FEATURES OR SYMPTOMS BECAUSE OF ALLERGIES OR SOMETHING ELSE. FINE. GET YOUR DAN TREATMENT AND 'HEAL' YOUR CHILD. BUT, DO NOT SPEAK FOR ME OR MY CHILD. DO NOT POUR MILLIONS OF DOLLARS INTO THIS VACCINE FAR-FETCHED THEORY. YOU ARE NOT HELPING US. YOU ARE NOT DOING ANYTHING FOR MY CHILD. WHEN MY CHILD BECOMES AN ADULT, YOU WILL HAVE DONE NOTHING TO HELP HER. YOU WILL NOT HAVE CREATED ANY NEW PROGRAMS OR SERVICES FOR ADULT AUTISTICS. MY CHILD WAS NOT HIT BY A BUS, SHE WAS NEVER MOWED OVER. SHE WAS BORN WITH AUTISM. SHE IS DOING WONDERFUL, AND I LOVE HER MORE THAN WORDS COULD EXPRESS. I NEED ASSURANCE THAT THE FUTURE WILL BE A HOPEFUL ONE. I WANT OPTIONS FOR HER, AND I WANT SOCIETY TO RESPECT HER AND SEE HOW TRULY AMAZING SHE IS. YOU DO NOT SPEAK FOR ME, I AM NOT PART OF THE SO-CALLED AUTISM COMMUNITY YOU CLAIM TO BE REPRESENTING. GO FIGHT YOUR FIGHT, BUT DO NOT CLAIM IT AS MY BATTLE TOO.

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?

The Holocaust & 9/11

That is what a "Dr." Rebecca Carley uses to compare vaccinations. She uses language like "holocaust of autoimmune diseases," calling vaccines the "true weapons of mass destruction," and ends her letter with, "Let's roll..."

To show such utter disrespect to the countless victims of the holocaust and of the September 11th terrorist attacks, how absolutely tasteless and unforgivable. For one, comparing autism to anything close to what those victims suffered is absurd. And for two, attempting to create the same passion one would have regarding the violence brought upon by extremists, to the autism-vaccine debate is appalling.

After reading her "theory," I have to say Kirby's fuzzy numbers don't look quite so bad. Seriously, though, she can't stand Kirby and is very fueled right now due to the "concession case." She, or her cohort(s), is posting messages on "recovery" boards, with that disturbing language referencing the holocaust and 9/11. It is a long, drawn-out manifesto, dropping plenty of scientific terms to almost sound legit. But, anyone with their head screwed on properly is quick to realize these are merely conspiracy-charged, senseless rantings.

She claims to have "reversed" all autoimmune diseases (including autism) and cancer in over 2,000 clients over the pas 9 years. This number includes pets. Although, it's not clear what percentage were animals who were "cured." It's scary to think she is posting her propaganda on these message boards. It appears to me, the parents there, may not have their heads quite screwed on. I wonder how many phone calls or emails she actually receives? The only hope may be that most of these parents worship David Kirby so much, they won't be swayed to try her "Hippocrates Protocol." Granted, I can't really say her methods are any worse than that of DAN!

She has a statement on her site, declaring she is NOT licensed to practice medicine and can never be licensed. The reason she gives? If she were to be licensed, it would be a "conflict of interest," and she would be forced to "promote" vaccinations. She further states she is not board certified. Why? A trend is appearing; she is not board certified because she is "developing the specialty" of "vaccine induced diseases, she refers to them as VIDS). She explains that "VIDS" is THE "umbrella under which...internal medicine, pediatrics,...psychiatry actually reside." Huh? At this point, is anyone really still calling and having this woman evaluate their child, or even their pet?

On this "doctor's" website, which is so very professional looking (sarcasm), she also detail the bizarre goings-on, in her words, about losing custody of her son. She has her story, and then there are the legal documents I have seen about this case. Let's just say they don't quite match up. She does, however, divulge that at the NYS medical board hearings, she was charged with having a "delusion of conspiracy." The list of folks I'd like to see charged with that seems to grow each day...

This is the first I have heard of this woman. Figured they were others who also had never come across her. The more you read from those "crusading" to rid the world of vaccines, the more your realize how lacking in scientific data and how nutty is. If you are interested, here's some more, on this "doctor":

http://quackfiles.blogspot.com/2005/04/rebecca-carley-md-disgrace-to-medicine.html
http://www.quackwatch.com/11Ind/carley1.html
http://www.neurodiversity.com/conspiracism.html

"Evidence of Mitochondrial Dysfunction In Autism and Implications for Treatment"

That caught your eye, huh? Please read this publication: www.scipub.org/fulltext/ajbb/ajbb42208-217.pdf

Sounds rather startling at first. But then, when you dig a bit further, the reality of it all gets much clearer.

First of all, having mitochondrial dysfunction is NOT the same as having mitochondrial disease. It is not surprising that people with various neurological disorders would have abnormal lab results for these various markers. But it is a big leap to take those irregularities to mean someone has a mitochondrial disease. Or, to make an ever bigger leap to assume that those "cases," are those in which toxins played a role. This article wants you to assume that your child is not born with autism.

Then you come to the part where the "treatment" for these autistic children with "mitochondrial dysfunction" is, guess what? The DAN! Protocol, followed by supposed evidence of the benefits of HBOT. OH BOY! So, I do a few checks, and the two authors of this "piece" (it's not a study, merely a 4 3/4 page article, with 5 pages of references) are, no shock here, DAN! doctors. They have a facility in Melbourne, FL. They encourage IV chelation, HBOT, etc. to "treat" autism. They have now put a big fancy new label of "MtD" on autism, perhaps to convince more parents to "treat" their child?

The label and use of "MtD" instead of autism suggests that autism is in fact a physical disease, an illness, which requires treatment or a cure. This is precisely what TACA, DAN!, and others who view and depict autistics as less than human, that is what they would like you to believe. That also inflates their already fat pockets. This is all a disgusting ploy to get more money. And, we've all seen how parents struggling to "cure" their autistic child instead of love and accept them, we've seen the damage that can result in. I now see exactly where Mr. Kirby was going with his article. I'm fairly certain I have tracked down all of these so-called studies he is referring to and where his "fuzzy" statistics (depicted as fact, backed by scientific evidence & studies) came from.

I think I am more appalled then ever. I see now why this frenzy was started, and the vaccine lawsuits are the tip of the iceberg. It goes way beyond those court cases. I realize now that it is indeed all about money for the DAN! doctors and treatment centers and spreading their hurtful message. This furthers their agenda, that we should not accept autism or autistics.

Autism In The Marketplace

My husband sent this article to me, it's on Newsday.com. It's an interesting piece, and I'm fairly certain this is the first one of its kind I've come across. It discusses adult autistics (yes, Jenny, they really do exist), dealing with finances, living independently, and the difficult issue of legal guardianship. The story is from the parent's perspective. It deals mainly with adult autistics who would seem to need little, if any, services. Yet, they still run into major issues with finances and have difficulty with other day to day interactions.

The story closely mirrors the ones I hear from families whose child is considered by the school to be "high functioning" and is dropped from special-ed or services. These children skim by, many drop-out or have major issues, especially in high school. If you can do fairly well with school assignments, sit still in class, they presume one doesn't need any extra help. They pay no attention to how one relates to others on the playground or cafeteria. If grades slip, its often blamed on the child losing interest or not paying attention. It often takes quite a fight to get services for the child, and prove to the school that help is needed. It appears, this same mind-set holds for when these children become adults.

While there are many adult autistics who are able to hold jobs and live independently, or others who are able to do so thanks to support services and help from their family, there are plenty that are slipping through the cracks. How many are homeless or institutionalized? What is the crime (against them), murder, or suicide rates? What number of them suffer with psychological issues, alcoholism, or drug addiction? These are areas that few have looked into, most would rather look the other way. It's not their problem right? And, now that we have "treatment" and someday soon a "cure," why do we need to concern ourselves with that right? It will be their problem, not mine. "I've got my kid on 50 pills a day plus some injections, a hyperbaric chamber, sauna, chelation, and more, I don't need to worry about him 'having autism' when he's 18, right?"

I realize "early intervention" and all is important, but to be honest, I worry more about what comes after age 18 or 21. My daughter did receive early intervention from the state, as well as private therapy, and we did a lot of "play therapy" at home. It wasn't really therapy we did at home, so much as it was we found new ways of playing and engaging our baby/toddler. We had to learn a different way to play with her, its been that way since infancy. My child thinks and acts differently, therefore, we have learned new and different ways of interacting with her. Basically, I feel if you have an open mind and a kind heart, you can help your child in those early years. The help is there if you seek it, and there's plenty you can do at home. Just be open to new ideas, be patient, and compassionate.

It's what will happen once my child turns 18 or 21, when the school will no longer assist us, that concerns me. I'm not going to assume her level of independence, at this point. We will support her in every way, and she will continue to make us proud--where ever the road leads her. We of course have some concerns over her physical and neurological health, but are hopeful those will improve with time. Putting those aside and solely thinking in terms of autism (along with her sensory and psychological issues), and her future--every aspect of what will happen in adulthood is concerning to me. If she is able to live independently, will services be available to assist her if need be? Will college be a feasible option? Will she be able to find a job, are there vocational programs? What would happen in an emergency, or if she had to deal with first-responders? Will she be able to find proper medical care and pharmaceutical assistance? What resources will be available?

This story highlights some of those concerns. I think whether your child will continue to reside at home or live independently in adulthood, there are a mountain of questions, and very few answers. We all know the majority of money that autism charities receive is going toward research, studies, media, etc. Very little goes to actually benefiting autistic children and their families, almost nothing goes toward autistic adults. Since the pro-cure groups, at least some of them, are now admitting that our autistic children are becoming autistic adults, perhaps there will be more stories on this. Hopefully, as their children enter adulthood, they'll realize the need and use their media savvy and celebrity friends to get more programs and more money flowing in to benefit adult autistics.


FYI: The link to the article is found in the title, if that doesn't work:
http://mobile.newsday.com/news.jsp?key=152152&rc=bu&p=1

[UPDATE] What's Wrong With This Picture????

Thanks to cs who left this in my comments, thank you for the information & for your eloquent sentiments. I agree with your perspective on this, you stated it beautifully. Thank you again.

"It was painted by artist Glen Angus to raise support for a bill in his state, if I remember correctly. I think it was to help cover the cost of ABA therapy or something.

I also find it offensive, but knowing the pain he must have felt when he painted it tempered that a bit. When I first saw the image I thought at least it would be interesting to see how his view would change with time.

The tragedy I see in the image isn't what the artist intended, though. Glen passed away shortly after the image was made. The real tragedy is that he didn't live to see his child grow and progress...perhaps he would have come to terms with things better in time.

He seemed like a nice man; he was a good artist, and I know he is missed in the art community.

I think it's tragic that he died with this weighing on his heart so heavily. Ultimately, I just feel very very sorry for him and his family."

Please visit this page to see the picture.

I do not know the origin of this picture. I often search via google, photobucket, & other image search engines for "autism." I'm curious to see the images, often they are very dark & depressing pictures. This one in particular was so startling. It was on Photobucket. If anyone knows its origin, please let me know. I am curious about the person or parent behind it.

The fact that the child is depicted as being buried in the dirt is very disturbing. The image of the child being in prison stripes in a jail cell furthers the stigmas that autistics have been taken hostage or have been kidnapped. The sentence underneath its title (Autism) is "Find my son before time runs out free him from the prison of his mind." What a sad statement for a parent to make about their child.

Why Does It Bother Me?

What's the big fuss if you are working to "eliminate" Autism? What's wrong if you say you're committed to eradicating it, for future generations? Why is it hurtful (and disturbing) when you promise to "prevent and cure anything along the Autism spectrum"? How come the terms "war on Autism," "Cure Autism Now," "Defeat Autism Now!" and others are downright frightening to people like me? Why does seeing celebrities peddling diets, supplements, and other "cures" for autism disturb me? Is it anything other than brave, for a mom to openly admit she's contemplated taking her autistic child's life? Is it really wrong to routinely preach that autism devastates families, destroys marriages, and puts most into severe debt?

What, really, is the harm in any of this?

From the Peoria Star Journal:

Numerous witnesses said Karen McCarron, a former pathologist, couldn't accept Katie's autism and was obsessed with finding a cure.

When a cure couldn't be found and suggestions of institutionalizing the girl and giving her up for adoption were rejected by family members, she chose to kill her.

Katie was sent to a special school for children with autism in North Carolina, where she lived with her father for nearly two years. Karen McCarron pursued various types of therapies and hired caregivers to work with her daughter as the obsession with curing the autism grew.

We all know what happened next. Sadly, Katie's story makes my point all too well. The current view society has of autistics is that they really don't count. Millions of dollars are spent each year by researchers working to find a cure and by parents willing to try anything to "rid" their child of autism. So, what else is society to think? Their views of autism are coming from typically one source, those views are very negative. The public must wonder how anyone, any family, could ever live with autism.

As much as we prefer to not think about it, murders (and attempts) like this happened before and continue to happen. This is something that cannot be ignored, will not be ignored. The organizations, politicians, and anyone else who fills the airwaves with hateful and hurtful depictions of autism will no longer go unchecked. Our voices are larger and louder than ever before.

So, the next time someone asks you about curing autism or about Autism Speaks or about the article they read in the paper--perhaps tell them about Katie. Tell them the beautiful words Katie's grandfather has shared with us. Tell them about your own child, or any of our children. Tell them how our kids are just that, kids. Yes, they are autistic, they are beautiful, they are human, they are here with us, and they are so full of life. Let them know why promoting the idea that autism is dreadful, and that autistics are not really human, let them know how very hurtful and dangerous that is.

Jenny Is Back On Her Typewriter...

...Someone PLEASE stop her!!

Well, with the holidays & all, I have just now gotten back to checking out TACA and all those other websites I love so much (sarcasm, in case you missed it!). Well, I missed quite a morsel here!! It seems that Jenny McCarthy (yes, the one who is unsure if any adult autistics exist...the one that has her "PhD" from Google...the one who practically guarantees that autism can be "recovered," that one) is once again writing a book. This one, I presume, will be an all-out tell-all about how to "recover" or "cure" your child. It will, it seems, feature bunches and bunches of pictures of "recovered" children, or kiddos "in recovery."

This, of course, leads me to at least 100 questions. Like, what is recovery? What does "recovered" look like? Who decides which child is actually recovered? That's just the tip of the iceberg. I also then wonder, since these pictures are just sent in with a simple label of "recovered" or "in recovery," who can really verify any truth behind the pictures? Very curious, indeed. Very irresponsible, indeed. Yes, Jenny and TACA, what a very big impact it will make, to have page after page of "recovered' children, placed strategically in a book all about how to recover your child, and, I guess, "success" stories of recovery.

The pictures, the stories, the half-truths, the lies...will only add to the current disparagements about autism. For one, it will do absolutely nothing to help a single autistic adult. It will not improve the educational or career opportunities for autistics. It will not change society's view of autism, nor will it prevent further discrimination of autistic individuals, and it won't help ensure that every autistic person is afforded human rights. No, at best, it will lead to parents wiping out their bank accounts on snake oil and further TACA's agenda (and fatten their wallet). At worst, it will again further stigmatize autism, lead to more discrimination and defiling of autistic people. Even scarier, a book such as this could lead parents to stop at nothing to "recover" their child. We have seen what can happen when parents see autism as something to be stomped out, and become obsessed with a cure.

Here is the information from TACA's website:

Jenny McCarthy Seeks Photos
of All Children Affected by Autism

Remember the impact of seeing the stack of photos of recovered and in the process of recovery from Larry King Live? It's time to do that again – this time in book form.

...........

Jenny McCarthy is looking for photos of children for her upcoming book on
recovered kids and kids in process of recovery. This includes all children on the autism spectrum that their families wish to participate.

It is my sincere hope that this book doesn't make it to print. Most especially if it is at all reminiscent of Ms. McCarthy's media blitz. The whole "I recovered my son from this dreadful thing that trapped him inside himself" with a bit of "you are only a good mother if your child can make the same amount of progress as mine," finished with a touch of "we shouldn't let autistic children grow up to be autistic adults." I'm fairly certain that no matter what efforts are made, it will still be published. But, I feel I must at the least let the publishers & author know my concerns. With any luck, the book will include at least one big disclaimer. Like this: DIETS, SUPPLEMENTS, OR ANY OTHER SUPPOSED "CURE" IN THIS BOOK WILL NOT WORK FOR EVERYONE; MANY CHILDREN HAVE TRIED SUCH THINGS, AND IT HAD ZERO EFFECT; WE DO NOT RECOMMEND BLOWING THROUGH YOUR LIFE SAVINGS FOR ANY OF THESE "TREATMENTS;" AUTISM IS NOT SOMETHING TO THINK OF WITH HATRED AND DISGUST, IT IS AND ALWAYS WILL BE A PART OF YOUR CHILD; MOST IMPORTANTLY, LOVE AND ACCEPT YOUR CHILD..." I'm sure I could think of a chapter's worth of disclaimers.

At any rate, I am off to start writing letters now. It is my right to let my voice be heard. This is something I am passionate about, and truly worried about. I don't know how any of us can really look at Katie McCarron's picture to the right, and not be fearful of the possible ramifications of this. Should you care to join me, here is some contact info:

The publisher is Dutton, a division/subsidiary of Penguin Group (USA) Inc. Of course, Jenny McCarthy is the author. The email, fax, & address associated with the pictures to be sent (& a possible point of contact here) in are as follows:

recoveredkids@gmail.com
FAX 310-826-8020

Ashley Davis
11812 San Vicente Blvd Suite 604
Los Angeles, CA 90049


Lastly, here is TACA's contact information:

TACA
P.O. Box 12409
Newport Beach, CA 92658-2409
Phone # 949-640-4401
Fax (949) 640-4424
You can google their website, if you want additional information on TACA or on this project.

Christschool Video: Autism at 10 Weeks of Age

Another Great Video From Christschool...

I wanted to share this video, mostly for what is written in it. I agree wholeheartedly with what Christschool says here. His son is so adorable, and so it's also a sweet video to watch. I too am of the belief that autistic 3 year olds were also autistic 18 months olds, autistic 2 months olds, and autistic in the womb. At least, I should say, I feel 100% that my daughter has been autistic from the moment she was conceived. Every autistic individual has their own journey, their own traits. As a whole, scientists and doctors have summarized many common features that are a part of most autistics. But, it's important to remember, each person will have their very own unique experience. I do feel that a lot of regressions are simply autistic traits becoming more evident to parents.

At any rate, almost everything, from pregnancy to delivery and onward, with our second child was completely different than our first. I was extremely nauseas, lost weight until I was 5 months along with my second pregnancy. My youngest daughter moved, often erratically, in the womb. I even joked with my husband that she would pull an "Alien" (the movie) on us & pop out of my stomach. She was delivered, blue and not crying. She had issues from day one, some birth defects, many digestive issues, and developmental delays evident by 6 months of age. Had she not have the cumulative amount of issues, or the severity of each was less, perhaps doctors nor us parents would have been concerned until she was closer to 3 years of age. Certainly, had I not had my first child to gage various milestones, I would have been far less worried about my second.

I think this is something all parents must really understand and think about. I also like the comparison Christschool makes with this "phenomena" to that of eyewitnesses. I studied eyewitness testimonies in school, your mind tends to compensate and "make-up" details, often subconsciously. I think this happens a lot, unintentionally, with parents of autistic children. Despite everything going on with my daughter from Day One, I was very skeptical of an autism diagnosis. I remember during her evaluation, I told my husband that I thought she was making so much progress and doing so great, there's no way she'd get a diagnosis. He looked at me in such surprise, he even laughed. We had a long discussion, and I realized I was sugar-coating my daily reality with my child. Partly, the meltdowns, mood swings, and other behaviors were becoming typical, despite them being very atypical. The other part, was all the love I have for my child. It felt at times that speaking about all the negative things we were dealing with, was complaining about her or degrading her. I had to understand that we were discussing these things to help her. It was not a whine-fest or pity party, I had to look at this in a concrete manner. I almost had to remove myself from my emotions, and view what was going on in my child's life more as an outsider. I viewed several videos of my other child at that age. These perspectives, and my husband's reassurance, helped me greatly. I can understand how parents can unknowingly tweak their child's history, remember things inaccurately.

I think if parents can realize or admit that their child's autism is a part of them, not something separate, they will learn to accept their child, all of their child. Hopefully, they will then focus on ways of helping and accommodating their child, supporting them, and preparing for their child's future--with autism. Instead of pouring all their money into fake cures and dehumanizing treatments in hopes of getting rid of their child's autism, they may focus their attention on their child's life, and making the most of each day (again, autism and all!).

If There Were A Cure...IAN Poll

IAN POLL

IAN (Interactive Autism Network) recently put a poll on its website. As of the minute I write this post, here are the results:

Adults with ASD: If there were a cure, would you take it?
(total votes: 255)

Yes
8%
No
81%
I'd wait and see what happened to others
5%
Don't know
4%

Is it really shocking to any of us? Well, at least to any of us who ever spend anytime with adult autistics? And, once again, yes Jenny & Larry, they do exist! I've yet to meet an adult autistic who says they'd jump at the chance to be cured. The overriding thought is without autism, who am I? Autism is a deep-rooted part of an autistic, just as brown eyes are to me. Yes, they say, living with autism can be very difficult. But, along with the difficulties come great gifts. All of the adult autistics I know fear that if a cure existed, what would be lost along with the negative aspects of Autism? Who would they be?

I think all parents need to remember that. I think parents damage their children's self-esteem and self-worth when they speak of curing their child or ridding them of autism. I fear to think of what a child must feel when their parent constantly refers to autism about the evil thing, how much they hate it, how it really is an ass-kicking. Unfortunately, most of those same parents feel their child is lost, has been kidnapped, is without a soul, etc. They feel their "damaged" child is incapable of having feelings, either for themselves or others. If their child is nonverbal, they typically think he or she is closer to a zombie than a human being. So, how do we ever get through to these people? I do not know, but I hope I find the answer one day.

These same people will look at a poll like this, and completely disregard the results. They'll come up with some type of crazy conspiracy of who completed the poll and why it's a bunch of b.s. But, for those of us who see and treat autistics as people, due all the same civil and human rights as the rest of us, we will see the obvious truth in that 81%. In fact, I see it rising to even much higher than that. If you have doubts on this poll's results, go speak to adult autistics (on all areas of the spectrum). Get ready to have your eyes opened WIDE.

Katie Wright Speaks Out

Katie Wright on Autism Speaks' Grants

A new post on "Age of Autism" from Katie Wright that I stumbled upon. I found it somewhat interesting to hear what her views & feelings toward Autism Speaks. Nothing earth-shattering, she still hopes AS will start pushing the whole biomedical crap, blame vaccines, etc. etc. But, something that may be worth a read. I for one like to keep Autism Speaks, curebies, and others on my radar screen, you know how the saying goes "...keep your enemies closer."

I can't help it, but I find some pleasure in this big divide that has formed (& is growing!) between the curebie-biomedical-mercury bunch and Autism Speaks. I find it so interesting that all these groups claim to want to "help" children with autism. Yet, together, they've done practically nothing to further the acceptance of autistics, assist teen and adult autistics with regard to career or vocational opportunities, living arrangements, independence, etc. They've done little to nothing to create solutions on changes in schools, the workplace, and in public that would benefit autistics. They have promoted the beliefs that autistics are missing a soul, hopeless, violent, and suffering. It appears that in the end, it will be TACA and Autism Speaks in the ring, fighting one another, parents on either side...and not a single autistic adult benefiting from the millions of dollars each organization blows through.

If you're interested in reading the article, click here.

Newsflash! Autism Is NOT Cancer!

I hear from time to time, some parents compare autism to cancer. They are somehow able make many parallels between autism and cancer. This, honestly, embarrasses me. I have friends and family members who are fighting cancer, I know parents who have lost their children to cancer. Cancer kills. Cancer is an evil disease. We need to find a cure for cancer.

I can't imagine going up to one of my friends & complaining to them about my child's autism, and how it's so much like their son or daughter's fatal tumor. I'm sick to think of a conversation comparing the chemotherapy and medications their child had to take (to save their life), and of all the treatments and therapies I might have tried to "cure" my child. I wonder what my friends would think if I were to bitch about my sleepless nights, how my child just wouldn't quit stimming, and how hopeless life with autism was...when my friend is up all hours pacing the hospital room, or their child was so sick from cancer that his body could no longer handle even the smallest of movements, or how their family remained positive and never gave up until the moment their child died.

No, any such conversations would sicken me. I can't believe anyone truly buys that garbage. It blows me away that someone would ever make such a comparison. For me, I see absolutely no connection to cancer or any other life-threatening disease. There are some minor commonalities one could draw between autism (any other disorder or condition that can be stressful on parents or a family) and any disease that also causes stress. But, beyond that, the parents of an autistic child, who has typical autism (i.e. classic, really anywhere on the spectrum), cannot and could not relate in anyway to having a child with cancer or any other fatal (or potentially fatal) disease.

The way I see it, parents who make this argument don't know the difference between an inconvenience and a utterly life-altering, horrible, tragic circumstance. To them, autism has wrecked their lives. Their plans of little league and a walk down the aisle have been destroyed. They are irritated and aggravated. Their life has changed, and to them, this is a nuisance. Autism is an inconvenience for these parents. Cancer is a tragedy. Cancer causes physical pain and symptoms, cancer is heartbreaking. Children who have cancer must undergo surgeries, infusions, injections, pills, and more in hopes of saving their life. Families are devastated. Cancer treatments and hospitalizations create major financial debt for these families. They do not have a choice as to whether or not to try a treatment. The alternative is certain death.

No parent of an autistic child (who only has autism) has ever had to live through that. They've never gotten on their knees and begged God to save their child, and by save I mean keep their child here on Earth. They've never cried so much they were certain they had no more tears, because of how heartbreaking it was to see their child lying in a hospital bed, connected to dozens of wires and tubes. They've never felt sure they were about to vomit up their insides because of the unbearable stress, fear, and hell they felt when the doctor tells them the treatment was unsuccessful. They have no clue what that pain feels like. They have no concept of being a parent to a child who has cancer, or any other life-threatening disease.

I feel safe to say that any of my friends who visit a cemetery on their child's birthday would gladly switch places with me--on any given day. They would move heaven and earth to get their child back, and trust me, if part of the deal with God was that their child would stay alive but be autistic, they would not need even a second to shout YES absolutely!

This phantom connection that some parents try to make between their autistic child and a child battling cancer will never make sense to me. Cancer is not a nuisance, not an inconvenience, not a different way of being. Cancer is heartbreaking, it is torture.

Cancer kills.

Autism doesn't.

End of story.