TUNE IN!

I'm very much anticipating this one! Will you be watching too? And, really, it should air TUESDAY, June 10!!!!

Tomorrow, Good Morning America will air a segment discussing the neurodiversity movement, featuring comments from myself, Kristina Chew of the Autism Vox blog and Dr. Thomas Insel of the National Institute of Mental Health. Please tune in between 8 AM and 8:30 on ABC. Click here for local listings.



Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

Inclusion

Following the Alex Barton story, the topic of inclusion was one many were discussing. Friends and family have talked to me about it. I think, first and foremost, inclusion has a place and should be available to every child. I'm a big believer that not only do disabled students gain from an inclusive setting, but that the typically developing peers gain a enormous amount (tolerance, understanding, to name two) as well. I also feel that inclusion is not always the answer, not all the time. Some children do better in a small classroom setting. Some need more supports and services only available in a special education class. The bottom line is this: inclusion should be available to every student. "All qualified persons with disabilities within the jurisdiction of a school district are entitled to a free appropriate public education." For some that will mean a (separate) special education setting, for others mainstreamed with typically developing peers, and still for others, a mix of both. Whatever the individual outcome or placement, the goal should always be in finding the most appropriate setting for each child.

My daughter is in a special education program at this point. Our district, and truly our state, is not one that has wonderful services for autism (or anything else under the special education umbrella). I don't even know if I could call the services "bare bones," as that seems like giving them too much credit. We have talked seriously about moving, especially when our child gets older, to have more services (specifically ones catered to her needs). I would say only about 60% of her needs are being addressed and met in her program. We supplement with private therapies and accommodations (provided by us).

There is discussion of mainstreaming her in a year, that is the goal for this upcoming IEP. Part of me is excited to have my child in that setting--in the event she is supported and it is a positive experience. Our school primarily opts for pulling children out for services, and is not quick to offer a para to a child. For parents like us, we are left having to decide whether we risk our child having a negative experience (too many students, lack of routine and understanding, not enough supports, etc.) in a regular classroom or if we are holding her back by keeping her in a special ed class. We should have more options available, but sadly, there are not. So, we begin to focus our thoughts on inclusion and making it work.

I have found some websites that look to be helpful (I've only spent a bit of time on each):

PBS Parents - Inclusive Communities "Learn about improving the overall quality of life for children with or without disabilities by promoting inclusion and respect for differences."

Paula Kluth's Inclusive Classroom Site
"Toward more inclusive classrooms and communities"

Inclusion Connection
It is the mission of the Inclusion Connection to advocate for persons with disabilities, supporting them in realizing self-determined lives, educating families and promoting inclusive communities.

Celebrating All of Us

Operation Respect "The inclusion of children with special gifts and needs in a compassionate environment that allows peer recognition of the unique character of each child or adult produces what can only be viewed as an island of humanity, caring, respect, and peace." - Peter Yarrow, founder of Operation Respect

Positively Autism has some information on inclusion, including this study:

Positive outcomes have also been reported for children with autism who participate in inclusive programs. According to a review of research conducted by Levy, Kim, and Olive (2006), the presence of typically-developing children in educational programs for children with autism was reported to have positive effects on social skills and behavior for the children with autism. In a report on an inclusive preschool program by Jan S. Weiner (2002), it was reported that one-hundred percent (nine out of nine) of the preschool children who completed the inclusion program (three of whom have autism) went on to attend a general education Kindergarten classroom, versus a separate special education classroom. This is a very small number of participants, so we do need to keep in mind that these results may not be typical for the larger population, but I think that the results are encouraging. Additionally, three out of the four preschools that participated in the project elected to continue their inclusion programs, even after the research funding ended.

Lisa Jo Rudy points out that inclusion just may not work for everyone. That's something many of us can relate to. I think each student should be looked at as an individual. Simply carrying an autism diagnosis should not pigeon-hole that child into special ed. Likewise, just because another autistic child was successful being mainstreamed, that does not mean it will work for every other student.

It's interesting, I've known parents on both end of the battle: those who are wanting more special education services for their autistic child and those who are pushing for inclusion. I think schools need to start with a clean slate each time a new child enters their district. The administrators and those who play a role in the student's placement should be free of prejudices and the stories of past children. History can play a nice role as far as recommendations, though. For example, "this" worked for another student and we wonder if it is a good option for this child. Aside from that small use of past experiences, it's important for schools and parents to come together, and devise a child's unique plan for educating each autistic student (hence, the name individualized education plan!).

Is Jenny Really An Autism Mom--and Why Should We Care?

Why am I concerned as to whether or not Jenny's son really is autistic? Why have I bothered to spend a few hours researching various conditions for these related posts? There are several reasons. First, I am not attacking Ms. McCarthy, I am simply trying to put some pieces together and ponder some possibilities (perhaps even offer insight). She herself has said several times now that her son no longer has autism, and that neurologists tell her he never had autism.

If this is the case, then we autism moms/dads and the entire autism community have to ask: Why she is still putting herself in the public eye as "THE" autism mom who represents each and every single one of us? It is one thing to be an actress or other celebrity and use your fame to bring attention to a cause (child abuse, drugs, medical conditions like cancer, etc.) and/or raise money for reputable charities. It is entirely different to do interviews, public appearances, be in magazines, and write books about autism, when or if your child doesn't actually have autism. This is a matter of ethics as well, since profits are being earned.

Most concerning is that her message is one of "recovery from autism," proclaiming that she "healed" her son. Why should parents pay attention at all, and even gain hope from, her son's supposed recovery in light of her now saying a. he no longer is diagnosed as having autism and b. doctors now say he never had autism? If you maintain that a certain treatment or diet "recovered" your child, there had better be zero doubt that this child has that which you claim to have recovered him from.

How can Jenny McCarthy claim to be an "autism mom" or to have "recovered" her autistic child, if there's any possibility her son never even had autism? Why should any of us, and anyone in the public, listen to her? I think these are legitimate questions, and ones we all have the right to ask.

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.

Whooping Cough, Again...

Whooping cough has again made the news in recent weeks. The subject has hit closer to home for me, as there have been cases in an elementary school not far from where I live. I have contacted that county's Department of Health--as thus far the media nor the county's website have spoken of these. I do have confirmation (letters from the school officials) however that there are indeed cases. Will update as I receive more information.

So often, people who are anti-vaccine tout that measles and whooping cough really aren't that bad. They tend to cite a child they knew who got one of the diseases and is fine. As I've mentioned before, whooping cough nor measles are anything to take lightly. And, certainly for the parents who have lost a child due to either of these diseases, these diseases are an absolute nightmare.

Last month, the East Bay Waldorf School in El Sobrante, California closed down due to a whooping cough outbreak. As the writer, Matt Keller, notes in his article, this entire event, and the whooping cough is "easy to avoid with a simple vaccine." An unknown writer at the San Francisco Chronicle ends his May 28 (2008, on page B-8 of the newspaper) editorial with this,

The Waldorf school closure offers some perspective: There is a risk in any medical decision - including the decision not to act. In this case, the choice of each parent became the shared infection of an entirely preventable disease.

There's also this report out today, that reminds us of the importance of booster shots. And, at the very least, of ensuring those who work with the youngest in our population are immunized against these diseases (and, also trained to realize symptoms and to not continue work when symptoms may be related to whooping cough or other serious, fatal diseases):

NEW YORK (Reuters Health) - Public health officials investigating a 2004 outbreak of whooping cough, or pertussis, among newborns in Texas identified the source as a health-care worker where the babies were born.

Staff members at a children's hospital in Texas noticed that six infants admitted with whooping cough had been born during the first half of June at the same general hospital.

A review of records uncovered a total of 11 such infants, on average about a month old, whose symptoms included cough, congestion, vomiting and arrested breathing. Nine infants had to be admitted to the hospital, including five treated in the intensive care unit.

According to their report in the Morbidity and Mortality Weekly Report, published by the Centers for Disease Control and Prevention, J. L. Hood and colleagues identified a 24-year-old health-care worker who had symptoms of cough, which brought on vomiting, and difficulty breathing while working in the newborn nursery from early June until mid July.

During that time she directly cared for 113 infants, including the 11 who came down with whooping cough.

All the babies recovered after treatment.

The health-care worker in this case had been fully immunized against pertussis during childhood. However, the CDC points out in an editorial note that the Advisory Committee on Immunization Practices recommends that health-care workers with direct patient contact and adults who have close contact with infants should be given the Tdap (tetanus toxoid, reduced diphtheria toxoid and acellular pertussis) vaccine.

SOURCE: Morbidity and Mortality Weekly Report, June 6, 2008.

I wrote yesterday about "Do Vaccines Cause That?" One of the sections that really stood out was regarding pertussis (whooping cough) and outbreaks that occurred following concerns over the vaccines. It is startling. And one can only wonder, when will we learn from history?

Because of the concerns about whole-cell pertussis vaccine, immunization rates had dropped in 1978 from 80% to 30% in the United Kingdom—and whooping cough epidemics soon followed. Indeed, between 1977 and 1979 the United Kingdom experienced 102,500 cases of whooping cough with 36 deaths...

Bold for emphasis by me, of course. Does that register with anyone who doesn't give their child the pertussis vaccine? 102,500 cases in 2 years, 36 deaths. Are you really willing to gamble your child's life?

In Japan a national debate resulted in the Ministry of Health and Welfare changing the recommended age for immunization because of concerns about the whole-cell pertussis vaccine’s safety and claims that it was no longer necessary to immunize because pertussis was not present in the community any more. Vaccine coverage for infants fell from about 85% in 1974 to 14% in 1976.4 Then, in 1979, a whooping cough epidemic resulted in 13,105 cases and 41 deaths. In the early 1980s Japan re-introduced pertussis-containing vaccines—using the newer acellular pertussis vaccines that cause less fever and local reactions—and the number of cases of whooping cough went down.8

Sweden had a similar experience. After discontinuing pertussis vaccine, rates of whooping cough returned to the levels seen in the prevaccine era. Of 2,282 who were hospitalized for whooping cough in 1981–1983, 4% had brain injury from the illness.4

Again, figures put in bold by me. 13,105 cases in one year, with 41 deaths in Japan. In Sweden, you have 2,282 children hospitalized, 4% of those have brain injury. Again, I ask--are you willing to gamble your child's life? To hold onto a belief that cannot be supported by any scientific data (that vaccines cause autism), and make serious (possibly life or death) decisions regarding your child's health is at best utter ignorance and selfishness, at worst, child endangerment.

Still feel whooping cough is no big deal? Watch this. And don't turn it off after 2 seconds, thinking your unvaccinated child is somehow "immune" from this. Watch the entire video. This is what whooping cough is. This is what a non-immunized child could sound and look like if they catch this horrible disease.

EDITED: I altered the time on this, as I wanted it to be the lead story for the day (not Jenny on TV)

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.

Neurodiversity on Good Morning America?

I ran across this today and wanted to share. I'm awaiting confirmation via email as to whether this is something ABC really is doing.

From "Good Morning America":

Good Morning America is doing a report on autism activism and neurodiversity. As part of the story, we'd like to include a photo montage of those who are a part of the community. If you or anyone you know is a part of this community and would be willing to be shown in the photo montage that would appear on Good Morning America, please send us your photos. The photos will provide a visual example of the diverse group of people behind autism activism celebrating the voices of autistic people. Please send the photos to Michelle.d.major@abc.com Thank you!


Edited to add:
Thank you to Angela and Camille for the confirmation. Bravo to ABC, let's see how it turns out when the cameras actually roll. Updates to follow...

Do Vaccines Cause That?

That's the title of a book I recently read and strongly recommend for those who have questions about vaccines. In "Do Vaccines Cause That?" the authors Martin G. Myers, MD and Diego Pineda, MS explain every facet of the vaccine debate. To be honest, I was skeptical about this book prior to reading it. Part of it was that I dreaded reading what I thought would be a whole bunch of science jargon, the other part was that I figured it was all old hat. I obviously have an interest in vaccines (specifically with regard to autism and the ongoing debate), and so the title greatly interested me. After reading this book, I'm happy to report my prior skepticism was unnecessary.

The authors have written this book in such a way that every reader can fully understand the material. They use realistic examples, cite many studies, and speak to their reader in a clear, concise manner. As a busy mother, reading this book late at night or in between errands during the day, this approach was greatly appreciated. I've always felt we made the right decisions with regard to our children's vaccines. And after reading "Do Vaccines Cause That?" I was fully affirmed in my beliefs. This book is very timely, even including the case of Hannah Poling.

For the most part, how the media reports (and often sensationalizes) the vaccine-autism issue is far from objective journalism. Too frequently, parents are basing their decisions off of emotional portrayals of a family's story, and from journalists, lawyers, or physicians profiting from the anti-vaccine movement. This book breaks down both sides, something that's been needed for a long time. To dispute cold, hard facts (science) simply because of how a journalist or celebrity portrays this debate is inexcusable.

Making the decision to not vaccinate your child should come from real scientific evidence, not from the innuendo and hype often found in magazine articles, message boards, or other agenda-driven sources (including journalists, politicians, and celebrities). Parents need to fully and completely understand the realities of vaccine-preventable diseases, the very real risks that exist today, and the dire consequences of not vaccinating your child. Recognize and comprehend the risks of such diseases, the risks of vaccines, and realize there is zero scientific evidence to link autism to vaccines (on the contrary, countless studies in various countries continue to outright disprove such a connection). Only then can a parent make an educated decision on whether or not to vaccinate their child.

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.

Society's Sad State

I was reading Odd One Out in the days immediately following Alex Barton's reprehensible ousting from his first grade class (a la Survivor). I was so deeply affected by the post on this inexcusable act. Primarily on the comments that Lastcrazyhorn had compiled and was writing on. I was outraged and then very saddened by the bias and ignorance I was seeing. Suggestions like this child just needed some discipline, or that his behaviors were due to poor parenting, or commending this teacher for bringing order back into the classroom, honestly make me wonder what country we live in and exactly what year it is.

The case of Alex Barton has done two things. For one, it has brought Autism, inclusion and mainstreaming, and special education into the public eye (at least temporarily). All the major news stations covered the story in some form or fashion. Furthermore, the story has brought bloggers together all across the world. I've seen bloggers who have no connection to autism writing on it; others whom I have many disagreements with are just as passionate about this child's rights. It's been amazing to see us, once again, all come together to make change. We do have to remember that this is far from over--both for Alex and for the rest of our children. So, we need to keep writing those in the government and making our voices heard.

The other thing this case in particular has done is clearly brought forward how a great many in society truly feel about autistic individuals: put them away. The vast majority of us parents speak about how relieved we are to be living in a day where we do raise our children. Gone are the days that we are forced to (or strongly advised by our physicians and others we trusted) institutionalize our children (well, in most cases: please read about Nate Tseglin). However, it seems that a number of people would prefer we do just that. They don't want our kids interfering with their child's education. They speak of our kids as if they have some rancid, contagious disease. One that if our kids area allowed in their child's classroom, will seep through and infect the whole school. They claim it's unfair for their child to be in a room with our child. Unfair? Why? Because our child may help your child learn about tolerance and acceptance? Because they may learn to not judge a book by its cover, once they get to know our child? I'm sorry those lessons are so appalling to these parents.

I hate to break it to you who think my child will so horribly disrupt your child's education that she should be dumped somewhere else: my kid isn't the only one having issues in class. Have any of you spent time in a public school classroom? In Vanillaville, USA, you are going to see a SPECTRUM of children in any given room. You will have kids of varying intelligence and skill sets, children who have learning disabilities, health issues, and those that are gifted. You are going to have kids who are poor, kids who are rich, and all those in between. There are going to be adopted kids, foster kids, kids whose parents are divorced, and so on. You may want to point the finger at my child and say she is the one affecting your child's education--but really, can you prove that none of those other children do?

My oldest child is in fact labeled "gifted and talented" based on an evaluation (IQ score, plus various tests of knowledge and ability). She is in a classroom with children of varying abilities, and all those differences I mention above. Do I sit and whine that any of those kids is disrupting my kid's education? No. She is in public school, that's all part of it. She does have a few children in her classroom that receive special ed services. I've witnessed a meltdown by one of her peers, another child who is literally unable to sit still, and another who has significant trouble with reading. Shall I begin a protest to take these students out of my child's class? I would never. School should be a place where children learn to be good citizens. That is still a part of today's lesson plans, right? I want my daughter to acknowledge and accept children who are different from her. I don't want my daughter to judge a peer based on their skin color, family situation, physical appearance, or so-called "behaviors" ala Autism.

If you feel that my autistic child, or any other autistic, disabled, or different kid is so horribly affecting your child's education, guess what? You have a choice. Go to private school. I'm sure there are some better-suited schools out there--you know, ones where only blue-eyed, blonde-haired, strong, "neurotypical" children are accepted (I wonder if there are any schools who support a program like T4, that may be more your liking). People will say I'm crossing a line, that these views of society in 2008 are nothing like Hitler. I beg to differ. I think many would agree that if and when a prenatal genetic screening for autism is available, abortion will become common place, as in the case of Down Syndrome. We have professors speaking--and smiling--at universities, about eugenics.

This is the state of our society today. In this country, it is touted that we are the land of the free, and that each citizen has the same civil and human rights. This is not the case when it comes to disabled persons. What have we learned from history? Why are so many unwilling to give our children and autistic adults a shot? Why is there such intolerance and ignorance? It is my hope that through Alex Barton's horrible experience (and, sadly, many others) that a dialogue can begin. I want real change, for my child, for the many other individuals I've come to know on this journey. I can only hope that society is ready to listen.

Response to Comments: Alex Barton & Inclusion

I received this comment by Eric (you can watch the interview here):

"This child needs special attention for his disability- he should not be in a class room with children of a normal performing level. After reviewing the interview from "The Early Show" http://www.breitbart.tv/html/103693.html the child looks extremely disruptive and probably is a distraction in class. Placing those with disruptive disabilities in normal classrooms detracts from everyone else's education and occupies too much of the teachers time. The classroom is better off without him."

Yes, he does need special attention. His mother was meeting with school officials, this teacher included, to make such provisions. From what I understand, he had an IEP in place, and most likely a BIP (and if not, the school was indeed failing him well before Wendy Portillo's disgraceful actions). He should be in a class with "children of a normal performing level" (whatever that is in kindergarten!). For one, it is the law. Alex, just like my child, just like your child, has rights. You're not saying that autistic people don't deserve the same rights as other citizens, are you? Please read about Least Restrictive Environment, and perhaps you'll better understand why Alex deserves to be in this class. A side note, when you say "normal performing level," I wonder what that means. Are you talking about behavior, academics, or IQ? Odds are, Alex has a rather high IQ and is very capable of keeping up with (or soaring past even) his peers in academics (when the right supports are in place). What would be your definition of "normal performing level," do you have a specific criteria a child must meet before being allowed in a classroom?

I watched the interview. Can you tell me exactly which behaviors were so deplorable that Alex should not be in his classroom? You state he "looks extremely disruptive." Really? I can't imagine how my eldest (the gifted one, remember) would act in front of a camera. Actually, I bet she'd act out in ways I'd be mortified about! I don't even think I could get my youngest to sit on my lap or be anywhere near the camera crew and those spotlights (to which I greatly applaud Alex!). You can't base how a child acts, in front of bright lights with odd sounds and such. I personally did not see any behaviors indicative of Alex being a nuisance in class. Perhaps it's because I spend 24 hours a day with two very quirky kids, but I saw an inquisitive child. He didn't seem much different than any other child I've seen on T.V. while his parent is being interviewed.

With regard to the behaviors of this child in school, no one denies that Alex wasn't having difficulties. That is part of autism, at least for every autistic child I know. There are steps in place for schools to help a child with this. IEP's and BIP's help, as does open communication with teachers, counselors, and therapists. It sounds like not all was being done to help Alex, that could be done. I sincerely hope that now that he has an official diagnosis, steps will be taken to help him out. He may benefit from having a para or other support services.

How would you define "disruptive disabilities?" Is it just the autistic children? A child with ADHD? Does this include a child in a wheelchair? A child who stutters? The child with emotional issues due to their home life? I have actually seen so-called "neurotypical" children in the classroom be more "disruptive" (although I feel that word is rather harsh) than an autistic child. A child with ADHD may have a hard time focusing or sitting still. Yet, I don't think anyone would suggest placing a child with ADHD into a special education class. A child in a wheelchair may require more time going to and from the classroom, and certain class activities may need to be adjusted to accommodate his/her needs. The child who stutters will take longer to read a sentence aloud. A child with emotional issues may get into fights, may have trouble concentrating, may cry or act out. Would you argue as strongly for those children to be in a separate classroom as you do for Alex (and apparently all autistic children)? In any given classroom, there's plenty of distraction. It's not just Alex or my kid who may require more of the teacher's time on any given day.

The last sentence is the one that really felt like a punch in the gut. The idea that Alex's classroom or any other autistic kid's class is "better off without him" is so disturbing. It is the same barbaric mindset that once institutionalized our children, giving them no hope of any type of life, our kids were seen as having no value. This same senseless thinking leads to these very crimes, and disgusting preaching like this. This is why we fight, this is why we are so passionate, this is why we rally. Until society sees our children as human beings, as individuals with the same rights as anyone else, and accepts them for who they are, we will not be silent.

Another reply I received:

"anon So, lets see here, this little kid in Florida was being a t*rd and the rest of the kids voted him out of the class? whats the big deal? He's probably the same kid who gets picked last or doesnt get picked at all for any team sports. It's amusing to see the mothers cry out in harmonic outrage for their little precious bundles of stupid reject. Your kids are t*rds. Deal with it"

This comment deserves no response, and therefore I won't give it any justification. I do want to have it up here, just so that those people who may be unaware of what we, what our children, what autistic individuals, and what disabled citizens face day in and day out. These hateful, ignorant viewpoints are everywhere. Prejudice is very real in our world.

"I'm Not Special"

Those are the words that Alex Barton has come to say repeatedly to himself. He screams in the car when his mother drops his sister off at school. He's refusing to eat and unable to sleep in his own room. Alex was recently kicked out of his school, by his classmates--after his teacher took a vote on it. Alex is thought to have Autism (currently being evaluated for Asperger's). He is also just five years old, in kindergarten at Morningside Elementary in Port St. Lucie, Florida.

Remember Kindergarten? That time of our lives when we are supposed to be taught to be good citizens, to learn social skills, to learn how to "get along," and how to obey the school rules. We're also supposed to have fun, play, and make new friends. Kindergarten is supposed to be the foundation upon which our next 12+ years of education will rest upon.

And yet, in Alex's classroom, the lessons being taught by Wendy Portillo appear to be ones of prejudice, intolerance, and outright cruelty. Alex's peers learned from their teacher that if someone is different, and you have a hard time understanding their habits, actions, delays, etc., then you simply dismiss them. Get rid of them. Kick them out. Take a vote, and out the classroom they go.

And, before you do, you might as well tell that person what you think of them. Five year old obscenities like "disgusting" and "annoying." This is brutality, no doubt. Melissa Barton (Alex's mother) reports that Wendy Portillo confirmed that this indeed happened. If that is the case, this teacher is cruel and inhuman, a person who has no business being in the education sector. She is teaching innocent, naive five year olds a lesson of hatred. A lesson that these children will not soon forget. We can only hope that these kindergarteners' parents have enough sense (and compassion) to explain to their children how wrong this is. It's far better to teach their children tolerance, acceptance, and understanding, and it's my wish they realize that.

If these reports have been confirmed, I see no reason why this teacher still has a job. She should have immediately been fired, no questions asked. One can't help but wonder--if this child wasn't autistic, what steps would the district would have taken? Had this been any other child in that classroom, all hell would have broke lose. There would have been protests, and no doubt, due to massive political pressure, this teacher would have received her walking papers STAT.

We've all seen how autism continues to be portrayed on television--as children who are violent, angry, withdrawn, and out of control, who were "kidnapped" or "lost their soul." The parents desperate and depressed, their lives "spiraling out of control." So, when the public hears that this child has autism, and was having "behavioral issues," most say "well, I can understand why you wouldn't want a kid like that in the classroom." They presume to know Alex all because of what they've seen or heard, these biased reports in the media. Society doesn't want to understand (let alone accept) autism or autistics--at any age. They're being constantly fed these ideas about recovery or a cure, not ever about the dignity or acceptance of autistic individuals. The message that those lives are not worthy of our respect or our time is what the public hears.

So again, when an autistic child is kicked out of class, they don't much care how or why it was done. They think nothing of the ramifications, not only on the autistic child, but also of the other children in that classroom. We are living in a culture of un-acceptance. We all must fit into the public's cookie-cutter mold, or we are just not good enough to be an equal member. Our society likes to preach a lot about being diverse, and about supporting those with disabilities. Yet, when it comes down to it, in the real day to day stuff, society would rather look the other way.

When people ask me why I cringe at a celebrity bragging about her "recovered" child or a politician working to "prevent and cure anything along the Autism Spectrum" or a grandmother declaring that "Autism knocked on the wrong door," I don't need to look far for my reasons. The case of Alex Barton clearly shows us that this propaganda reaches far and wide, not only into our homes, but even into our schools and churches. I want the Barton family to know that they have my full support, along with many others. I was grateful to read this, and learn that Alex's mother, Melissa Barton is a very strong woman, who will not let this slide:

“He has many of the symptoms of Aspergers” says his mother. “The teacher knew that he was under evaluation even having a part-time assistant just for Alex, and she decided that the best way to handle him would be through humiliation from his peers. I cannot imagine how he must have felt as his teacher encouraged the other students to bully Alex by telling him he is disgusting and they do not like him among other things. This is abuse and discrimination among other things; I will not soon let this go” says Melissa Barton. “The moment he needed me the most, I was at work. I do not know if he will ever trust teachers again, I do not know if I will ever trust the Port St Lucie School District again. I know it will be a while before I can convince my little boy that learning is fun. I am deeply sorrowed by the pain my child suffered at the hands of his Port St Lucie school teacher.”

Mrs.. Barton went on to say, “This is a sad day for parents of disabled children across the USA. I am now seeking the help of a physiatrist for my son as he refuses to eat, sleep in his own room and other problems that arrived directly after the abuse."

Make your voice heard, tell the Port St. Lucie school district that this type of discrimination and hatred will not be tolerated.

CONTACT INFO:

Morningside Elementary School Principal:
Mrs. Marcia Cully
cullym@stlucie.k12.fl.us
(772) 337-6730

St. Lucie County Schools Superintendent:
Michael J. Lannon
4204 Okeechobee Road
Ft. Pierce, FL 34947-5414
Phone: 772/429-3925
FAX: 772/429-3916
lannonm@stlucie.k12.fl.us

St. Lucie County School Board Chair:
Carol Hilson
772-519-0397
hilsonc@stlucie.k12.fl.us

Vice Chair:
Judith Miller
772-528-4545
millerj@stlucie.k12.fl.us


The Autistic Self Advocacy Network is asking all those who write to express their outrage to cc: info@autisticadvocacy.org so that ASAN can keep track of the strength and sources of the response. They also advise us to be mindful that abusive messages hurt our cause--please be respectful in your comments.

A special thanks to Bev at Asperger Square 8 for bringing this to my attention.
Others who have blogged on this:
ballastexistenz
Whose Planet Is It Anyway?
Whitterer on Autism
Maternal Instincts
The Joy of Autism
LeftBrain/RightBrain
Action For Autism
Along the Spectrum

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."