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Autistic boy killed with ‘chemical cosh’

21 May

Disability Scoop reports today on the awful story of an autistic child killed at a group home:

Denis Maltez, who had autism, died in 2007 at age 12 after being restrained by staff members employed by the group home where he lived in Miami. An autopsy determined that he was experiencing serotonin syndrome, a condition where the body produces too much serotonin, the chemical that regulates a person’s mood. The syndrome can be caused by a combination of psychiatric medications.

….

“This is a clear case of a 12-year-old child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision,” said Howard Talenfeld, Quesada’s [the boy’s mother] attorney. “Tragically, this case is one of many cases where foster children and developmentally disabled children are given powerful drugs to control their behavior instead of utilizing appropriate behavioral interventions.”

With echoes of the inappropriate ‘care’ dolled out to Jesse Moores, this seems to me another example of a young person with special needs treated with scant thought or care. Its sickening that there seem to be so many of these stories on both sides of the Atlantic recently. I sincerely believe that there needs to be an _international_ coalition of voices – made up primarily of autistic people and their immediate families – to offer oversight on how autistic people are treated. This cannot be allowed to continue. Closing down homes, jailing perpetrators etc _after_ the fact is all well and good. We need something proactive not reactive.

Fire, Fatal Injury, and Claims of Certification in an Independent HBOT Clinic

4 May

By now, most readers of LB/RB have learned about the critical injury of an Italian 4 year-old (Francesco Martinizi), and the death of his grandmother, which occurred as the result of an apparent flash fire/explosion at a hyperbaric oxygen therapy center in Florida.

Media Story

Apparently, the boy was likely being treated for Cerebral Palsy.

Media Story

Cerebral Palsy is not an Undersea and Hyperbaric Medical Society (UHMS)-approved indication for the use of hyperbaric oxygen therapy, and this was recently commented on by Dr. Charles S. Graffeo in an article in the New York Times online by Jane E. Brody.

He cautioned patients to steer clear of independent hyperbaric centers owned by a single doctor or small medical group that is not affiliated with a major hospital or medical school. Commenting on claims commonly made by such clinics, he said: “No legitimate organization would condone treating cerebral palsy with hyperbaric oxygen therapy. I haven’t seen anything that is even potentially promising to support such a use. If I had a C.P. child, I wouldn’t even consider it.”

Given these recent comments in the New York Times article, I wanted to learn a little more about this Florida hyperbaric oxygen therapy clinic – Ocean Hyperbaric Neurologic Center (OHNC). It’s a clinic that apparently may also use HBOT to treat autism. The clinic appears to be exactly what Dr. Graffeo cautioned about. It seems to be an independent, privately-owned hyperbaric center, and according to the clinic’s website, appears to have a single MD on the board and staff.

The medical director listed at the OHNC’s website is George F. Daviglus.

Dr. Daviglus is a licensed medical doctor in the state of Florida, and apparently, as allowed for by Florida law, may not carry medical malpractice insurance.

Additional information from the OHNC’s website tells us the following about Dr. Daviglius:

Dr Daviglus performed duties as co-director of Ocean Hyperbaric Neurologic Center since 1998 and is now proud director of the clinic. He is certified in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society and is Diplomate of the American Board of Surgery, Thoracic & Cardiovascular. Additionally, Dr Daviglus holds teaching and attending medical positions at numerous medical institutions including Thoracic & Cardiovascular Surgery at VA Hospital, Jackson Memorial Hospital and University of Miami School of Medicine.

While seemingly innocuous (and likely reassuring to potential patients), it’s probably somewhat misleading because it’s stated that Dr. Daviglus is “certified” in Hyperbaric Medicine “by the Undersea and Hyperbaric Medical Society”. The UHMS is apparently not an organization that “certifies” the medical expertise of physicians in hyperbaric oxygen therapy like a medical specialty board at all. From the UHMS website page that elaborates on physician certification:

Physician Certification

Physicians can obtain board certification in Undersea and Hyperbaric Medicine through the American Board of Emergency Medicine (ABEM) and the American Board of Preventive Medicine (ABPM), with a current certification from one of the 24 primary member boards of the American Board of Medical Specialties (ABMS). Physicians must submit an application to the board through which they are certified. Physicians certified by an ABMS member board other than ABEM and ABPM and who fulfill the eligibility criteria must apply to ABPM. Upon successful completion of the examination, certification is awarded by the board through which the physician submitted the application.

So it appears that “certification” in Undersea and Hyperbaric Medicine is actually the responsibility of ABEM and ABPM, not the UHMS. Both the ABEM and the ABPM are member boards of the American Board of Medical Specialties. If a physician is certified by either the ABEM or the ABPM (or any other ABMS member boards), a search at the ABMS website should reveal this. A search for physicians with the last name “Daviglus” turns up the following:

George F. Daviglus

American Board of Surgery
Surgery – General (General indicates Primary Certificate)

American Board of Thoracic Surgery
Thoracic Surgery – General (General indicates Primary Certificate)

There was nothing returned for ABEM or ABPM, nothing about Undersea and Hyperbaric Medicine, and Dr. Daviglus does not appear on UHMS-maintained lists of physicians certified by ABEM and ABPM.

The UHMS does provide accredidation for hyperbaric facilities themselves – The Ocean Hyperbaric Neurologic Center is not listed by the UHMS as a UHMS-accredited facility.

Additionally, the UHMS appears to have some potential affiliation with the National Board of Diving and Hyperbaric Medical Technology (NBDHMT), the board that certifies hyperbaric technicians, diving medical technicians, and hyperbaric registered nurses.

While the two technicians listed on the Ocean Hyperbaric Neurologic Center’s staff page do appear certified as stated, a search for “Daviglus” turns up zero results at the NBDHMT website for CHT, DMT, or CHRN.

It should also be noted that the UHMS does certify “Diving Medical Examiners”. Physicians receiving this education and certification provide medical assessments of “fitness for diving”. Dr. Daviglus does not appear on the list of UHMS-certified Diving Medical Examiners.

It seems possible at this point, that the Ocean Hyperbaric Neurological Center webpage about the staff may not reflect what some would expect with such a claim of certification.

Although unconfirmed, it may be that the director of the clinic possesses a certificate (or certificates) of completion from UHMS-approved Hyperbaric Medicine CME coursework for physcians. Such courses do have the objective of providing education on the subject and often include the word “certification” in the course title. While not exactly “certification in Hyperbaric Medicine by the Undersea and Hyperbaric Medical Society”, according to one of the providers of this type of education, an introduction to hyperbaric medicine course “provides the credentials recommended for Physician Hyperbaric Supervision”.

If this is the extent of the “certification” held by Dr. Daviglus in hyperbaric medicine, the clinic’s website might better serve those seeking to clearly understand the staff’s relevant training and “certifications” by adding some clarification. Then again, if something along the lines of completion of one or two weeks worth of CME coursework in hyperbaric medicine represents the extent of the “certification” in hyperbaric medicine held by the director of this clinic, this may contribute to an explanation of why this facility appears to treat conditions like cerebral palsy and autism in the first place – conditions for which there appears to be very little legitimate scientific support behind the use of hyperbaric oxygen therapy (some have even called the use of hyperbaric oxygen therapy for such conditions, “quackery”).

Yes, this accident (fire/explosion) is tragic, very tragic. If Francesco indeed survives the injuries he’s apparently sustained, the next couple of months are likely to be very very rough. The situation certainly isn’t helped by the fact that there probably isn’t much in the way of good scientific evidence to support the notion that little 4 year-old Francesco should have ever been in such a facility in the first place.

Author Note: “Do’C” is a nickname, short for Dad Of Cameron. Do’C is not a physician or licensed healthcare provider of any kind. Along with occassional guests, Do’C writes the Autism Street blog.

HBOT quackery maims 4 year old

2 May

So it turns out that four year old Francesco Pio Martinisi had Cerebral Palsy.

HBOT is not a valid treatment for CP and there is no quality science to support the idea that it may be one day.

There is growing interest in the use of hyperbaric oxygen therapy (HBO2) for children with cerebral palsy. Although there is no rigorous evidence to support this management, private hyperbaric centers have been established throughout the United States and Canada….

They are Italian and in an echo of Tariq Nadama, came to the US for a treatment not offered in their home country. CBS4 states they have spent ‘hundreds of thousands’ of dollars on HBOT ‘treatment’.

Nobody knows why the fire started but one thing is sure. There was no medically indicated reason for Francesco to be in that chamber. This was another totally unnecessary accident.

An open letter to Jim Carrey

22 Apr

Today on The Huffngton Post, actor Jim Carrey posted his thoughts about autism and vaccines. With his very first paragraph it became apparent how little Carrey understood the issues involved:

Recently, I was amazed to hear a commentary by CNN’s Campbell Brown on the controversial vaccine issue. After a ruling by the ‘special vaccine court’ saying the Measles, Mumps, Rubella shot wasn’t found to be responsible for the plaintiffs’ autism, she and others in the media began making assertions that the judgment was in, and vaccines had been proven safe. No one would be more relieved than Jenny and I if that were true. But with all due respect to Ms. Brown, a ruling against causation in three cases out of more than 5000 hardly proves that other children won’t be adversely affected by the MMR…

Point one Mr Carrey. The vaccine issue is only controversial to adherents of your belief system. Within scientific, medical, legal, autistic and parental circles its not even slightly controversial.

Point two, the three cases chosen were chosen – by the plaintiffs legal team – to represent their absolute best chance of winning. If they had won, there was an excellent chance all the cases that were suggesting MMR as causation would have just ‘won’ automatically. Thats why its called an Omnibus.

Point three, regarding the MMR, it has been firmly established that:

a) The data supporting the MMR hypothesis was fixed.

b) The science supporting the MMR theory was badly wrong – both badly done and exposed to contaminants.

You might also note that the court was not attempting to see if the children were ‘adversely affected by the MMR’, it was looking to see – using the three cases the legal team representing the families thought were the absolute best – if MMR caused autism. It didn’t. Thats probably why your Campbell Brown found it easy to say the MMR hypothesis was dead and buried.

You go to say Mr Carrey that:

Not everyone gets cancer from smoking, but cigarettes do cause cancer. After 100 years and many rulings in favor of the tobacco companies, we finally figured that out.

Yes, we did – and do you know how? With _good science_ – just like the science that established in the three MMR test cases that the MMR didn’t cause autism. And its fascinating that you bring up this parallel to the smoking issue and then later in your blog post invoke the name of Bernadine Healy. Healy – who’s ‘more sensible voice’ you say you’d rather listen to. Did you know Healy used to be a member of TASSC:

TASSC was created in 1993 by the APCO Worldwide public relations firm, and was funded by tobacco company Philip Morris (now Altria)….

According to Sheldon Rampton and John Stauber in their article How Big Tobacco Helped Create “the Junkman”, one of the forerunners of TASSC at Philip Morris was a 1988 “Proposal for the Whitecoat Project,” named after the white laboratory coats that scientists sometimes wear. The project had four goals: “Resist and roll back smoking restrictions. Restore smoker confidence. Reverse scientific and popular misconception that ETS (passive smoking) is harmful. Restore social acceptability of smoking.”

[own inserts]

Is that what you consider a sensible voice Mr Carrey? Someone who supported the tobacco agenda?

Moving on, you say:

If we are to believe that the ruling of the ‘vaccine court’ in these cases mean that all vaccines are safe, then we must also consider the rulings of that same court in the Hannah Polling and Bailey Banks cases, which ruled vaccines were the cause of autism and therefore assume that all vaccines are unsafe. Clearly both are irresponsible assumptions, and neither option is prudent.

First and foremost, the vaccine court did not rule at all in the Hannah Poling case. HHS conceded. And what they conceded was that Hannah Poling was damaged by vaccines resulting in ‘autism like features’. In fact, when we look at the the one piece of medical science carried out on Hannah Poling (co-authored by her own father), we see that only three of the symptoms described as being the result of vaccine injury appear on the DSM (IV) diagnostic criteria for autism.

As for Bailey Banks, this is a perfect illustration of both how the vaccine court in the USA was designed to work and also how terrible the evidence was in the three MMR test cases.

The Banks ruling (subtitled ‘Non-autistic developmental delay’ by the way) drew a line of causation from vaccine to PDD-NOS. It is able to do this as the burden of proof for any science presented to the vaccine court is ‘50% plus a feather’. In other words, it just has to be plausible, no causation needs to be shown.

What doesn’t seem in doubt is that Bailey was injured by a vaccine which resulted in a condition called ADEM. The judge in the case then went on to accept the plaintiffs position that the ADEM in turn caused PDD-NOS. He did this seemingly because there was no evidence to the contrary – e.g. no evidence that ADEM *doesn’t* cause PDD-NOS.

In any scientific situation – including civil court in the US – this would never have been accepted. The plaintiff would have had to have demonstrated that ADEM *did* cause PDD-NOS. And a search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’.

So, in the Banks case, because there was no evidence that ADEM does not cause PDD-NOS, they won. In every situation bar the vaccine court, the Banks’ would not have won their case. There is no science to support the idea ADEM causes autism.

Bearing this ‘50% plus a feather’ concept in mind it is clear just how utterly dreadful the evidence was to support the idea MMR caused autism. Not only could plaintiffs not provide any evidence that MMR causes autism, respondents produced reams of evidence to show it clearly doesn’t.

You carry on Mr Carrey to say:

I’ve also heard it said that no evidence of a link between vaccines and autism has ever been found. That statement is only true for the CDC, the AAP and the vaccine makers who’ve been ignoring mountains of scientific information and testimony. There’s no evidence of the Lincoln Memorial if you look the other way and refuse to turn around. But if you care to look, it’s really quite impressive. For a sample of vaccine injury evidence go to http://www.generationrescue.org/lincolnmemorial.html.

Your analogy is ridiculous. I could go to any library and find evidence for the Lincoln Memorial without ever seeing it. In fact, what your analogy does is demonstrate exactly how blinkered and able to only face one direction at one time you and your colleagues are.

The evidence you present as that being supportive of evidence between a link between vaccines and autism is equally ridiculous and blinkered. I simply don;t have the time to tackle the mountain of misinformation presented on the page you link to suffice to say there’s not a single section that doesn’t have a major error. Most of them have been tackled on this and other blogs over the years.

Next you say:

In all likelihood the truth about vaccines is that they are both good and bad. While ingredients like aluminum, mercury, ether, formaldehyde and anti-freeze may help preserve and enhance vaccines, they can be toxic as well. The assortment of viruses delivered by multiple immunizations may also be a hazard. I agree with the growing number of voices within the medical and scientific community who believe that vaccines, like every other drug, have risks as well as benefits and that for the sake of profit, American children are being given too many, too soon. One thing is certain. We don’t know enough to announce that all vaccines are safe!

Mr Carrey, *vaccines do not contain anti-freeze* – for goodness sake, even Jay Gordon, Evan’s Paediatrician knows that! Did you also know that (to quote myself):

There’s also Aluminium in breast milk so lets compare the two.

According to this paper (which is from 1990 – any more up to date papers welcomed) the amount of Aluminium in breast milk is 49 ?g/L. The average amount of breast milk expressed per day is 0.85 liters.

This means that 41.65?g Aluminium per day is in breast milk.

Now, according to this paper, there is between 125 – 850?g of Aluminium per dose in a vaccine.

So, for a 6 year old, total Aluminium is between 2,125 – 14,450?g.

In real terms this means that after between 51 and 346 days breast feeding, a 6 year old will have taken onboard the same amount of Aluminium as from the total US vaccine schedule.

Now I couldn’t find out what vaccines contained the lower amount or which contained the higher amount. Even so, this means that if every vaccine a 6 year old has that contains Aluminium contains the highest possible amount, within a year of breast feeding they will have matched that.

Or to put it another way, an anti-vax tree-hugger soccer mom who doesn’t vaccinate her baby will have given him the same amount of Aluminium he would’ve had in six years after one year of breast feeding.

And thats of course, not even touched on the fact that:

In the Earth’s crust, aluminium is the most abundant (8.13%) metallic element, and the third most abundant of all elements (after oxygen and silicon)

And is found naturally occurring in sea water, fresh water, the human body etc etc.

[Regarding Formaldehyde]…There’s also Formaldehyde in Apples, Apricots, Banana’s and….ah, I lost interest. Lots of stuff. Including the human body.

So – how much is in vaccines?

According to this and using it in combination with the US vaccine schedule referenced above, we can see that the total amount of Formaldehyde in vaccines from the vaccine schedule for a 6 year old child is 1.2016mg (again, do your own maths, correct me if I’m wrong).

For comparison to that 1.2mg in all vaccines for a 6 year old, 1 (one) banana contains 16.3mg Formaldehyde.

Mr Carrey, you’ve got to stop throwing these scaremongering nonfacts around. Its damned irresponsible for a start.

Lastly Mr Carrey, you say:

If the CDC, the AAP and Ms. Brown insist that our children take twice as many shots as the rest of the western world, we need more independent vaccine research not done by the drug companies selling the vaccines or by organizations under their influence. Studies that cannot be internally suppressed.

In terms of autism, if you want to make a big deal out of the fact that ‘our children take twice as many shots as the rest of the western world’ then please consider this – the UK has less shots than you. We also have a higher prevalence than you. 1 in 100 vs 1 in 150.

And please also don’t invoke silly conspiracy theories. Think about how science works. A study is done, funded by Eli Lily for example. It is peer reviewed and found to be good quality and it is published in, lets say NEJM. Now, *every single reader of that study* can see exactly what methods and means were used to reach the studies conclusions. I ask you Mr Carrey, how much more independent can you get? How much more transparent? Basically anyone, anywhere can try and replicate that same studies results. If they can and a few others can – the results are good. If nobody can (think Andrew Wakefield) then the results must be bad.

And for goodness sake man, grow up, who is ‘suppressing’ what study exactly? Have you _any_ evidence at all that any study ever has been internally suppressed? Or are you just throwing this stuff out to scare people?

Mr Carrey, I loved the Truman Show but this isn’t it. There’s no god like figure overseeing every aspect of your life and wanting to control it. I ask you – get in contact with an actual scientist and go through your concerns with them. At the very least they’ll be able to stop you saying silly things like there’s anti-freeze in vaccines.

Putting a price on life

20 Apr

Sometimes you really have to wonder exactly what the motivations and priorities are of people who work for disability charities. For example, the Foundation for People with Learning Disabilities recently commissioned a study that showed that:

The findings, detailed in the Economic Consequences of Autism in the UK report, reveals that children with autism cost £2.7 billion a year, yet for adults the figure is £25 billion – more than eight times as much.

Funded by the Shirley Foundation and led by Professor Martin Knapp at the London School of Economics and King’s College London, the research shows that for adults with autism the highest costs are those generated by health and social care provision (59%), followed by lost employment (36%) and family expenses (5%).

Now, the reason this study was commissioned was apparently to show how;

…[the figures] give serious weight to the argument that more resources are needed to intervene early and effectively in the lives of those who are affected by the condition. Early intervention would help individuals with autism and their families experience a better quality of life and reduce the high costs incurred in later years…

Well, maybe.

To me they smack far too uncomfortably of putting a price – a cost – on a persons life. I wrote about this three years ago and I invoked the spectre of the Nazis. My friend Dinah Murray commented on Mike Stantons blog:

[A] philosopher told me about a Nazi propaganda film he’d seen, called ‘Freedom through Death’. It featured golden haired youths clad in white, wheeling drooling [non]persons around in wheelchairs while the audience was asked to consider how much labour was being wasted on keeping the droolers alive.

Yes, it smacks far too uncomfortably of that. That it was commissioned by the Foundation *for* People with Learning Disabilities makes it all the more disturbing.

And lets not beat around the bush here, when you put a financial cost on a life you are explicitly enslaving that person. Article 1 of the Universal Declaration of Human Rights states:

All human beings are born free and equal in dignity and rights.

Article 4 states:

No one shall be held in slavery or servitude; slavery and the slave trade shall be prohibited in all their forms.

In *all* their forms.

And when you enslave someone you cheapen the worth of their life. That individual is referred to as ‘slave’ not ‘person’. The irony here being that the reader of _this_ story is invited to think about how unnecessarily expensive the life of an autistic person is. The ends do *not* justify the means.

Did you think that was it? More MMR bull arrives

25 Feb

The recent decision by the Special Masters in the Autism Omnibus case that MMR/thiomersal can’t cause autism according to evidence presented by HHS and lack of evidence presented by Master et al hit the mercury militia hard. They genuinely thought they were going to win.

But, of course, there was a ‘Plan B’ ready just in case. Today we see its co-ordinated unveiling. In part one, that scientific heavyweight Jenny McCarthy, together with her partner Jim Carrey released a press release:

Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism…

Both the inference and the statement of fact are in error here. The United States Government has _never_ conceded that vaccines cause autism. I challenge McCarthy and Carrey to show the statement that contradicts me. Team McCarrey’s announcement today also fails to establish that the US government have conceded vaccines cause autism.

Of course, the historical reference is to Hannah Poling. As has been discussed numerous times, Hannah Poling’s autism has not been shown to have been caused by vaccines. I have asked various people, including David Kirby numerous times to provide back up to their belief the government have said vaccines caused ehr autism. They cannot. They have not. In point of fact, only three of Hannah Poling’s symptoms that were described by both HHS and a scientific case study co-authored by her father as those being caused by vaccines, tally with the DSM (IV) criteria for ASD.

The case of Hannah Poling is a red herring.

As we shall see, so is this ‘new’ case.

Team McCarrey go on:

The announcement comes on the heels of the *recently unsealed* court case of Bailey Banks vs. HHS

If by ‘recent’ one means July 2007 then they may have a point. But I don’t think ‘recent’ can really apply to a case which has had open access to it (Kathleen blogged about it in May 2008) for about a year and a half. So why lie? To add to the drama, whip up mystery and confusion of course.

But now we get to the meat of it – the actual ruling. In Part II of today’s coordinated attack, RFK Jr and David Kirby blogged about this case.

Kennedy jumps straight in:

…last week, the parents of yet another child with autism spectrum disorder (ASD) were awarded a lump sum of more than $810,000 (plus an estimated $30-40,000 per year for autism services and care) in compensation by the Court, which ruled that the measels-mumps-rubella (MMR) vaccine had caused acute brain damage that led to his autism spectrum disorder.

Whereas David is a tad more circumspect:

Is vaccine-induced ADEM (and similar disorders) a neurological gateway for a subset of children to go on and develop an ASD? That question will now become subject to debate…Special Master Abell had no trouble linking MMR to ADEM in Bailey Banks’ case. But linking his ADEM to PDD/ASD was more difficult.

So, lets rewind a little. Bailey was awarded a payment because he was found to have suffered vaccine induced damage. Cool. Thats the system working as it should – a child is damaged by a vaccine, they get compensated. What the MMR vaccine was established to have done in Bailey’s case was cause something called ADEM. What McCarthy, Carrey, Kennedy and David are now all claiming is that this ADEM resulted in an ASD diagnosis.

They rest their case on the conclusion of Special Master Abell:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

On the fact of it, it looks like they are right. But they aren’t.

Bailey has a diagnosis of PDD-NOS (Pervasive developmental disorder not otherwise specified) which is indeed a subtype of ASD.

However, whilst PDD-NOS is a subtype of ASD (alongside autism etc). ASD is in turn a subtype of PDD. As the National Dissemination Center for Children with Disabilities notes, the term PDD actually refers to a category of disorders and is not a diagnostic label. So when Abell refers to Bailey’s vaccine induced ADEM as leading to PDD he is not referring to ASD. He is referring to PDD. Not PDD-NOS, which _is_ a subtype of ASD but PDD, of which ASD itself is a subtype. Or, to quote Wikipedia:

PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs.

Abell made something of a worrying statement in his conclusion. I’ll quote from David Kirby:

Abell also chided MacDonald for his assertion that “all the medical literature is negative” in regards to an ADEM-PDD link. “However, soon thereafter, he corrected this statement by clarifying, ‘I can find no literature relating ADEM to autism or [PDD],'” Abell wrote. “It may be that Respondent’s research reveals a dearth of evidence linking ADEM to PDD, but that is not the same as positive proof that the two are unrelated, something Respondent was unable to produce. Therefore, the statement that ‘all the medical literature is negative’ is incorrect.”

Was any evidence that there _is_ a link between ADEM and PDD produced? I’ll have to read through more carefully. Its worrying that the SM is reduced to ‘chiding’ a witness for such a thing as a clarification of terms. Wasn’t he more worried that there was an extreme lack of evidence linking ADEM to PDD at all? Did Petitioners produce _any_ evidence that there was a link? A quick search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’. I don’t want to second guess a Special Master but it does make me worried that maybe he simply didn’t get some of the science.

David also lists some of the symptoms of ADEM:

Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

None of these say autism to me. I also did fine one ADEM paper in PubMed together with measles:

We report a seven year old male with measles associated acute disseminated encephalomyelitis (ADEM) despite having received measles vaccination in infancy. The diagnosis was based on serum antimeasles antibodies and MRI brain. The patient was managed with high dose corticosteroids along with supportive measures. There was a complete neurologically and physica recovery.

There was a complete mental and physical recovery. This doesn’t seem to indicate causation or autism.

In my opinion based on what I’ve read so far here we have a little boy who either already had or was on the cusp of PDD-NOS. He was also vaccine damaged resulting in ADEM….and thats where the link breaks down. It might be enough for 50% and a feather but the fact that PDD is not PDD-NOS, together with the total lack of any evidence I can see to link ADEM to PDD, let alone PDD-NOS speaks volumes.

Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.

There are no positives to autism

1 Dec

Well you know – except when there are:

As Charlene Sawyer, a bespectacled young woman in jeans and pink Nikes, sings “Danny Boy,” they stand still. They don’t sip their beers or talk among themselves or puff on their cigarettes. They just listen.

Sawyer sings the old Irish ballad like they’ve never heard it before, delivering it in a spine-tingling, operatic style, her specialty.

When she finishes, the crowd fills the bar with applause. Sawyer grins and scoops up her orange notebook of sheet music. She knows she nailed it.

What most of the patrons in the bar don’t know is that Sawyer is autistic.

The Centre for Disabilities this young lady attends describes her as ‘an exceptional talent’. But what is also clear – as the article mentions is that her autism plays more than a passing role in her singing:

Because of her disability, Sawyer will probably never sing in a great performance hall. But if she didn’t have autism, she likely wouldn’t have cultivated her voice to such a degree in the first place. Many high-functioning autistics such as herself nurse obsessions, and Sawyer’s obsession is music.

I’m not so sure this young lady might not ever sing in a ‘great performance hall’. She might have trouble and need help, but I bet she could. What is beyond doubt is the fact that her autism’s insistence of attention to detail and perseverance is what made her voice the beautiful thing it is now.

I’d say from reading the rest of the article that she might have a thing or two to learn about other autistic people but what is beyond doubt that autism has helped make her who she is. Without autism, her gift for singing would’ve been lessened or not be actualised at all.

There are people in this life who will tell you everything about autism is bad, that it contains no positives. Do not trust these people because – as the story Charlene Sawyer shows – they are wrong. Life is never so black and white.

A greater acceptance

24 Nov

“I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

A survey by the Down’s Syndrome Association reports on how the parents of Down’s kids have elected to parent rather than abort their children in increasing numbers.

Following the introduction of screening for Down’s syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade.

Since 2000 the birth rate has increased, reaching 749 births of children with Down’s syndrome by 2006, the latest year for which figures are available.

The increase is down to knowing somebody with Down’s, religious or anti-abortion beliefs feeling life had improved for people with Down’s. I ain’t going to get into a pro-life debate (I’m not, I’m pro-choice, end of.) but I am *immensely* encouraged to see that some parents can act rationally and with thoughts for their children first and foremost.

Initial results show that 25 per cent said they already knew people with Down’s syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down’s syndrome. Surprisingly almost half of those questioned said they did not think they would have a child with Down’s syndrome and that’s why they continued.

Most respondents said they felt supported by their family and friends.

One respondent said: “I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

Another said: “I already felt a strong sense of responsibility for my unborn child and knew that I would love it and want it regardless of any additional needs it might have. I knew I could count on friends and family for support.”

This would seem to be the winning mentality of the ethos espoused by the DSA, their aims being:

We provide information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them.
We strive to improve knowledge of the condition.
We champion the rights of people with Down’s syndrome.

We can only hope that one day, the same sort of autism-friendly results come about. Certainly it won’t be any time soon if those who represent autism as a soulless condition in need of nothing but cure continue to prattle on in factless books.

More power to you all DS community.

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