Archive | Autism RSS feed for this section

Reading Age of Autism Part 4 – Stretching the truth

13 Oct

Over the last few days, I’ve tried to show how the authors of Age of Autism have retro-fitted the symptoms of mercury poisoning to try and make them await a diagnosis of autism. They have suggested things like tremors, paralysis, reddening of extremities and various other things are very similar to symptoms of autism. Or at least, they _will_ suggest these things in upcoming chapters (I’ve already noted a large passage on the thoroughly debunked Bernard paper later on in the book). They are also working hard throughout Chapters 1 – 4 to enforce the idea that things like schizophrenia, bipolar, Down syndrome and of course autism are _new_ things.

Nowhere (so far) in the book is this more apparent than Chapter 4 (entitled Pollution):

But were these men really seeing something that had been missed for centuries? Or did they happen to be in a position to observe a cluster of cases of chronic disease as it first appeared?…What if they were diseases born of the newest phase of human civilization, children of coal combustion, distributed mechanical power and the Industrial Revolution?

Page 125

However, a large block positioned itself in front of Olmsted and Blaxill in the shape of Dr John Haydon Langdon Down. The first person to classify what later came to be called Down Syndrome. However, as is clear from the work Of Dr Darold Treffert, he also found both early onset and late onset autism.

The authors don’t like this. It puts the carefully emerging hypothesis in grave danger. Why? If autism existed before the emergence of ethylmercury then their ideas are moot, the part of Chapter 5 I have read so far makes this clear. This is the very hypothesis they are working towards. So in order to protect their hypothesis, they rubbish Darold Treffert’s findings.

Down classified two groups that contain descriptions of autism. Groups he called ‘developmental’ (what might be called ‘regressive’ today) and ‘accidental’ (autistic from birth). First Blaxill and Olmsted tackle the problem (from their viewpoint) of ‘accidental’ autism.

Unfortunately, none of these accidental cases are ever fully described and so its impossible to distinguish between true autism cases or just the scattered presence of autistic behaviours.

Page 129

And then ‘developmental’ autism.

In making the case for Down as an early observer of autism, Treffert relies on his idiosyncratic willingness to set aside the timing of onset as a relevant marker for an autism diagnosis. Most of the cases he proposes as autistic wouldn’t pass that bar for other observers.

Page 129

However, in regard to ‘accidental’ autism I urge the reader to look at the following passages Treffert quoted from Dr Langdon Down:

“bright in their expression, often active in their movements, agile to a degree, fearless as to danger, persevering in mischief, petulant to have their own way. Their language is one of gesture only; living in a world of their own they are regardless of the ordinary circumstance around them, and yield only to the counter-fascination of music.”

…

“I know nothing more painful than the long motherly expectancy of speech; how month after month the hopes are kept at high tension, waiting for the prattle which never comes. How the self-contained and self-absorbed little one cares not to be entertained other than in his own dream-land, and by automatic movements of his fingers or rhythmical movements of his body… they have well-formed heads, finely-textured skins, well-chiseled mouths, sparkling eyes, features when in repose leading one to augur only brightness and intelligence… he runs to you when called but makes no response in words. He returns your kiss with a bite, and runs away with agile steps, rolling his head with a horizontal swaying motion…”

This is the group Blaxill and Olmsted claim are not described enough. Hardly. This is autism.

In regard to the ‘developmental’ group, Treffert quoting Langdon Down describes them thus:

In these children the early months of childhood were uneventful and “intelligence dawned in the accustomed way.” But later, around age six or so, ” a change took place in that the child’s look had lost its wonted brightness; it took less notice of those around it; many of its movements became rhythmical and automatic.” There was “cessation of increasing intelligence”, deferred speech and “lessened responsiveness to all the endearments of its friends.” Dr. Down writes “I have had many examples of children who had spoken well and with understanding, but who lost speech at the period of the second dentition, and had also suspension of mental growth.” Dr. Down provides several examples. One was a boy who “attracted no particular attention during the first six years of life” but then “during the period of second dentition” suddenly lost speech. “He heard everything that was said, but never replied to a question.” This child did gradually regain some speech but “afterwards always spoke of himself in the third person.” The other case example was that of two brothers who also “both lost speech at the period of second dentition.”

Blaxill and Olmsted dismiss this second category because of the phrase _first dentition proceeding_ stating that this means these kids were too old for an autism diagnosis. However, late regression is far from unknown in modern times. The author and ex-Guardian columnist Charlotte Moore describes her son Sam undergoing several regressions way past the modern ‘cutoff’ age of three.

I emailed Dr Treffert to see what he made of Blaxill & Olmsted’s claims. Here is his email to me quoted in full.

The authors, to the contrary, understate the remarkably perceptive and accurate observations Down made of what is unmistakably early onset and late onset autism. I discuss those highly accurate before-their-time observations by Down
in my internet posting of an article titled “Dr. J. Langdon Down and Developmental Disorders” in the articles section of the savant syndrome website at www.savantsyndrome.com. The authors omit many of Down’s terms and traits which apply so often to autism–
speaking in the third person; “fearless as to danger”; “living in a world of their own”; fascination with music; “self-contained” and “self-absorbed”; in a “dream-land”; “automatic movements of fingers or rhythmical movements of the body” and “runs to you when called but makes no response in words”. And so on and so on. Likewise Down makes clear reference to what we now call “early onset” and “late onset” forms of autistic disorder. I refer your readers to the article above where Down, while not using those present day terms, clearly lays out the existence of those two differing-onset scenarios.

Of equal interest is the fact the Down choose the term “developmental retardation” to describe this form of disorder separate from “congenital” and “accidental” types of “retardation”. Now in fact, over a century later, autistic spectrum
disorders are classified as “Developmental Disorders”. Another before-its-time credit to Dr. Down.

I read Down’s lectures in my effort to trace the beginning descriptions of savant syndrome. As I read about savant syndrome, I was surprised to find such an early description of “developmental retardation” which we now call autistic spectrum disorder by Dr. Down more than a century ago. I wrote my article above to provide some context for present day consideration of an ‘epidemic’ of autism. I wanted simply to point out that autism did not begin with Dr. Kanner’s description of it in 1943, but rather has no doubt been present in some portion well before that time. Dr. Down’s accurate description of both early onset and late onset autism, while he did not use that terminology, provided some documentation, and perspective, that autistic disorder has been around for a very long time. And that fact needs to be considered in looking at incidence and prevalence at present day levels.

The best way to answer the book’s portrayal of my observations and conclusions regarding Dr. Down and autism, is for the reader to go to my article and draw their own conclusions. I am sure they will agree that what Dr. Down described was early and late autistic disorder in unmistakable terms.

*Please note my conversation with Dr Treffert is ongoing, I’ll publish the whole conversation in a separate blog post* .

Later on, with irony so thick you could almost taste it, Blaxill and Olmsted after waving aside clear descriptions of autism say (regarding a separate matter):

There was no evidence, no proof, just an elaborate exercise in anthropological speculation that was also at odds with the facts.

Page 134

So far, that’s the best description of Age of Autism I’ve yet heard.

Reading Age of Autism Part 3 – Building the case

12 Oct

Chapter 3 of Age of Autism (Age of Acrodynia) concentrates on two things. Firstly the text discusses Pink Disease which is:

…a disease of infancy and early childhood marked by pain and swelling in, and pink coloration of, the fingers and toes and by listlessness, irritability, failure to thrive, profuse perspiration, and sometimes scarlet coloration of the cheeks and tip of the nose. It is due to absorption of mercury. Called also erythredema polyneuropathy and pink disease.

Source

OK so thats all well and good. However the _subtext_ of this chapter is a little bit more paranoiac. Oh and when I say ‘subtext’ I’m being kind. It’s really not subtle enough to be a subtext.

Point one of the subtext – establish the idea that all forms of mercury poisoning are different from each other:

Over centuries of misuse, wide variations in formulation have generated a wide variety of symptoms, symptoms disparate enough to generate consistent controversy over whether they resulted from mercury exposure or something else. Anyone who believes he or she has isolated mercury’s specific effects and pinned one on an exact dose of a particular formulation is….showing a naive and inadequately respectful grasp of the dangers of quicksilver and its progeny.

Page 94

Here Blaxill and Olmsted begin to build the case that autism is _different than any other form of mercury poisoning_ and that those of us who believe it looks nothing like mercury poisoning are ‘naive’.

However, what Blaxill and Olmsted fail to grasp- or tell the reader – is that there are symptoms common to all forms of mercury poisoning which just do not apply to autism.

Methylmercury poisoning
– impairment of the peripheral vision;
– disturbances in sensations (“pins and needles” feelings, usually in the hands, feet, and around the mouth);
– lack of coordination of movements;
– impairment of speech, hearing, walking; and
– muscle weakness.

Elemental mercury effects
– tremors;
– emotional changes (e.g., mood swings, irritability, nervousness, excessive shyness);
– insomnia;
– neuromuscular changes (such as weakness, muscle atrophy, twitching);
– headaches;
– disturbances in sensations;
– changes in nerve responses;
– performance deficits on tests of cognitive function.

Inorganic mercury
– skin rashes and dermatitis;
– mood swings;
– memory loss;
– mental disturbances; and
– muscle weakness.

Source.

None of these symptoms look anything at all like autism to me. Sorry boys, swing and a miss.

Point two of the subtext – establish the idea that all forms of mercury poisoning were unique to their times.

Pink disease was _new_ . Once again the remedy was the disease and once again the clues were there.

By attempting to establish that Pink disease was new, it will be easier later on in the text for Blaxill and Olmsted to pretend knowledge that posits _autism_ as new. Once again though, they are troubled by the fact that autism doesn’t look like mercury poisoning…or are they?

Perhaps the most affecting evidence of calomel’s tragic legacy comes from the testimony of those who suffered from Pink disease and are now adults, many of whom still suffer from severe side effects. A high profile survivor is Heather Theile of Australia. She founded the Pink Disease Support Group in 1989. She describes her life today:

n particular, I have a terrible sense of position of both my body and hands. For example, it takes me ages to line up a clothesline, the clothes and the pegs to hang out clothes. I have to have a rope hanging down from the ceiling of my car port to be able to have a guide to park the car in the correct place. I am hopeless with any locks, catches, car seat catches etc. I go to open a door, but miss the catch by inches. I drift when walking and often bump into walls and doors. I cannot cope with verbal instructions at all and have to write “everything” down. This is known as “thinking in pictures” (Temple Grandin).

Grandin is probably the most famous person in the world diagnosed with autism; Thinking in pictures is the name of her best known book.

Well Dan and Mark, Heather Theile also says:

…As you said “mercury is mercury is mercury”, and I would add, “mercury poisoning is mercury poisoning is mercury poisoning”.

Given that you’ve worked so hard to shake off that very notion in the last three chapters, would you say Heather Thiele is _really_ someone you can rely on to be objective?

The game stepped up in this last chapter. Blaxill and Olmsted are working hard to prepare the ground for their main idea – autism is both new and a new form of mercury poisoning. However so far, they’re not doing all that well.

Andrew Wakefield’s vaccine patent

11 Oct

I’m reading through the transcripts from the General Medical Council Hearing on Andrew Wakefield and his colleagues at the Royal Free Hospital. It is long. Very long. Each day runs tens of pages (day 31 is 79 pages alone). Even beyond the bulk of the proceeding I find it difficult reading. I find it very difficult to read about the ethical lapses committed in the name of care of disabled children. Because of that, I quickly moved to a topic I have already written about and one that is less painful to discuss: the patent application Mr. Wakefield submitted on his “transfer factor”.

A thorough discussion of the patent history can be found on Brian Deer’s website. Brian Deer is the journalist who uncovered much of what the GMC was later to pronounce as ethical violations.

The patent is very clear in that it covers both the use of the transfer factor as a therapeutic agent and as a prophylaxis. In other words, Mr. Wakefield patented a treatment and a vaccine. Even though this is painfully clear, Mr. Wakefield has continually denied that the invention was a vaccine.

Day 31 of the hearing went into great detail about the patent. I was surprised to read (or had forgotten had I read before) that Mr. Wakefield applied for the patent without his hospital’s knowledge. This is very odd since the Royal Free was named as the applicant.

Below is a section from a memo, dated March 10, 1998 from Ruth Bishop to Cengiz Altan Tarhah, of University College, London (of which the Royal Free Hospital is a part).

Last summer, Andy Wakefield wrote to the School describing a patent application which he had personally filed along with Neuroimmuno Therapeutics Research Foundation (NIT). This was filed without the School’s knowledge, although in the name of the School. This application concerns the ‘transfer factor’ and Mr Wakefield asked if the School would be prepared to take on the prosecution and costs – he was (and is) meeting these himself.

Applying for a patent without approval from his institution is amazingly foolish. Aside from the obvious chutzpah, it basically invalidates the patent. For most people this would be a remarkable career mistake. While is is serious, it pales in comparison to the many other ethics violations that the GMC found Mr. Wakefield guilty of.

Let’s take a closer look at the question of whether it was Mr. Wakefield’s intent to use the invention, the “transfer factor”, as a vaccine. Mr. Wakefield submitted a business plan whereby he and the father of child 10 (the 10th child in the Lancet study) would develop the transfer factors.

In parallel with the clinical trial the company will develop a clinical diagnostic for the presence of the measles virus. It is estimated that the market for this diagnostic is about £4,000,000 per annum in the UK alone. The company will also investigate the potential of transfer factors as vaccine alternatives. An animal model trial of the value of measles specific transfer factor in preventing inflammatory bowel disease will begin upon securing funding.

Emphasis added.

Recally, Mr. Wakefield contended that the MMR was causing inflammatory bowel disease. He had plans to test his transfer factor to prevent IBD, not just to treat it.

It was a Vaccine.

Should that language be vague enough for some to still claim Mr. Wakefield didn’t intend on developing a vaccine. Here is a section from the “Strategy and Objectives” section of the business plan:

[Immunospecifics] is at present no more than a concept, but one with a unique opportunity. The strategic goal for the venture will be to achieve full regulatory approval for the use of antigen (infectious agent) specific transfer factors in a variety of clinical conditions where existing treatment regimes are either non-existent or have limited effectiveness. This strategy will permit the company to establish a clear technical and medical lead in this area with a resulting dominant market share. Paralleling the use of [transfer factors] as therapeutics will be a research programme aimed at demonstrating the value of [transfer factor] as a vaccine.

Emphasis added.

Again–a vaccine in addition to a therapy.

It was a vaccine.

A sub-heading of “Strategy and Objectives” reads: Establish the potential of the high specific active preparations as a potential measles vaccine. It just doesn’t get much clearer than that.

This study will be done in conjunction with ‘Immuno’ a subsidiary of Baxter Health Care, in Austria using simian model systems. The efficacy of the [transfer factor] will be assessed by its ability to prevent measles specific IBD during challenge experiments. ‘Immuno’ have agreed to undertake the preliminary work with the [Royal Free Hospital] at no cost, although Immuno’s contribution is estimated to be of the order of £100,000. If successful this concept will be developed further in collaboration with a major pharmaceutical company, such as Glaxo Wellcome’s Jenner Institute. The full relationship between ISB and Immuno needs to be resolved.”

They planned to develop this with someone like Glaxo Wellcome’s Jenner Institute. That would be a vaccine research group (Jenner being the inventor of the first vaccine, for smallpox, in the 18th century).

Further, the business plan included objectives:

“Medium term objectives for the venture will be: 1) to take the purified and characterised measles specific [transfer factor] through formal product registration by undertaking phase II and phase III clinical trials; 2) establish the most appropriate route for the commercial development of the product; 3) develop the potential for use of [transfer factors] as vaccine replacements; 4) introduce new anti-infectious agents TFs to the company’s product development portfolio and take them through to formal product registration.”

Emphasis added.

Vaccine replacements. Replacements. Not “we are using the name vaccine to mean a therapy”, but a replacement.

I know I’ve given the evidence a number of times in this post, but I just can’t understand why Mr. Wakefield even tries to deny his intent to develop a vaccine in the true sense of the word.

It was difficult to understand how people believed Mr. Wakefield’s story before. I will be amazed (but not surprised) that they continue to do so.

Just in case you missed it, here is one of the goals for Mr. Wakefield’s proposed company: “Establish the potential of the high specific active preparations as a potential measles vaccine”

Reading Age of Autism Part 1 – An Unhidden Agenda

10 Oct

The first chapter of Age of Autism (called The Age of Syphilis) could easily have been summed up in one short sentence: Mercury is bad m’kay? Well no shit Sherlock(s). We all know that.

Taking us an a tour (and the book _is_ reasonably well narrated and edited) through the insane asylums of various European countries, through the lack of association of mercury poisoning and indigenous races of various countries, the two authors end up in Vienna and (place tongue in cheek) in a bombshell moment of horror, reveal their idea that Mozart might’ve died of mercury poisoning. Hardly a new idea. According to Wikipedia, Mozart has been suggested to have died from over 100 different things but the most likely is acute rheumatic fever.

What makes Age of Autism different from most is that they posit that Mozart’s mercury poisoning (if he was which is in doubt) came about whilst he was trying to cure Syphilis. Indeed, you could get the idea from reading Age of Autism that just about everyone in the world from the 1600’s onwards died of mercury poisoning whilst treating syphilis.

Lurking underneath this first chapter with its autism-free mundane plodding from situation to situation is where the authors reveal one of the main themes of the book.

…the best medical minds in Europe were slow to realize…

Page 24

But the notion that medicine might have been that habit just didn’t occur to [them] – perhaps because it could only mean that doctors were causing the worst manifestation of syphilis. And that was simply inconceivable.

Page 29

Not using ‘recognized forms of treatment’…may have spared the American Indians the brain lesions symptomatic of neurosyphilis.

Page 30

Despite all the evidence and concern, the heart of the medical profession remained committed to mercury treatment, and mainstream physicians rose strongly to its defense.

Page 32

I’m sure you don’t need more examples but trust me – they’re there. Anyway, as you can see Age of Autism is not _just_ a book about mercury being bad (m’kay?) its also a book about mainstream medicine and how stupid and purposefully evil it is as well as how frickin’ great complementary medicine is. Take a look at those quotes again. “See?” B & O seem to be screaming hysterically, “See? Look – even back then they were useless, these ‘doctors’…its just like now with The Vaccines!!!”

I mean don’t get me wrong – the mercury treatments of Syphilis were frequently worse than the disease but lets compare the trace amount of mercury in paediatric vaccines these days to a passage from Age of Autism:

Patients coated in mercury often stayed wrapped in bedclothes for weeks…[t]hey sat in baths saturated with mercury or squatted on stools above a steaming cauldron of it…

Page 31

So lest we forget, these two medical procedures, one commonly known as a ‘targeted precise injection’ and one known as ‘slopping that shit on with a spoon’ are not really comparable. So far, this is one of the main (though not only) weakness of the book – its comparing apples with oranges.

My latest book

9 Oct

I’d like to thank the anonymous donor who sent me a copy of Age of Autism – the book. It arrived this morning. So for the next few days I’m going to put aside the unabashed joy of reading Under the Dome by Stephen King and take up this newer work of fantasy. I promise to blog everything I can.

New National Autism Clearinghouse In The Works

7 Oct

Disability Scoop has an article, New National Autism Clearinghouse In The Works, which states:

A handful of disability organizations are joining forces to establish a national resource center to assist people dealing with autism and other developmental disabilities.

The new initiative known as Autism NOW: The National Autism Resource and Information Center will be established by The Arc in collaboration with the Autistic Self Advocacy Network and Self Advocates Becoming Empowered with the help of $1.87 million awarded by the Department of Health and Human Services this week. Autism NOW will be tasked with helping people connect with services and interventions in their own communities.

Here is the press release from The Arc:

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc would receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

First Autistic Presidential Appointee Speaks Out

7 Oct

Wired Magazine has an interview with Ari Ne’eman, Exclusive: First Autistic Presidential Appointee Speaks Out. Mr. Ne’eman has been appointed by the Obama administration to to positions: a seat on the Interagency Autism Coordinating Committee (IACC) and a seat on the National Council on Disability (NCD).

The author of the Wired piece, Steve Silberman, also blogs at PLoS. His piece there is No More Pity: The First Openly Autistic White House Appointee Speaks Out.

The Wired piece does touch on the opposition to Mr. Ne’eman’s appointment. I am grateful that this an other side issues are also met with a real discussion of what Mr. Ne’eman’s views are. I wish there even more of that discussion. Here is a small sample:

Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.

As a parent, I appreciated this question and answer:

Wired.com: What advice would you give to neurotypical people who want to become effective allies of the autistic community?

Ne’eman: At the political level, watch where your money is going. There are a lot of well-meaning people who think they’re helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”

Given Mr. Ne’eman’s recent appointments, I felt this was probably the key question of the interview:

Wired.com: What do you hope to accomplish in Washington?

Ne’eman: All across the country, we have hundreds of thousands of people on waiting lists for access to community services. People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life. Instead, because of a bias in the way Medicaid is structured, many of us are segregated in institutions, which offer a much lower quality of life to disabled people at the same time that it works out to be much more expensive. It’s easier to get states to pay for an institution than to get them to allow people to access services in their homes. Making community services more accessible would be a huge game changer for all kinds of people with disabilities.

Passing one particular piece of legislation — the Community Choice Act — would accomplish that. The Community Choice Act would make it so that states would be required to pay for supports and services at home or in the community, but it would actually save money, because institutional placements are very expensive. There’s no reason not to do this.

Free and Appropriate Education?

6 Oct

I’m a bit short of time this morning so couldn’t give this story the time it deserved. The following is a cut and paste job from Fox Houston:

Dreams brought Kenneth Chibuogwu to America and in time determination brought many of those aspirations within reach.

“I worked hard. I came to this country with nothing,” says Kenneth.

It is a country this father and husband have deeply embraced, along with its core convictions.

“If you don’t stand up for something, you’ll fall for anything,” he says.

And what could be more worthy of battle than his first born son, Chapuka, “Chuka” for short a child who will spend each and every day of his life challenged with autism?

“This child was a gift from God,” insists Kenneth.

Guaranteed by federal law a “free and appropriate education” for their son, Kenneth and wife Neka hoped the Alief School District would prove an able partner in helping Chukka reach his potential.

It didn’t happen.

“When I went there I saw things no mother would want to see,” says Neka her visits to Chuka’s middle school.

“My wife went to observe, found him squashed in the corner and nobody cared,” says Kenneth.

“There was nothing I could do but cry because I was so shocked that such a thing could go on in this country,” added Neka of the repeated conferences with Alief administrators ending in stalemate.

In Texas when parents and educators can’t agree on whether a school district is giving a disabled student all that the law demands the state offers a procedure called “due process” where a sort of education judge listens to all the evidence and decides the issue.

In May of 2007, using much of their life savings, Chuka’s parents filed their case.

Instead of seeking compromise, Alief launched a full-blown legal counterattack alleging the case was “improper” and that the Chibuogwus “harassed” district employees during meetings.

“Nobody in this household harassed the school district. I feel that they harassed us,” insists Neka.

“These people had been railroaded, these people had been maligned,” says special education advocate Jimmy Kilpatrick who represented Chuka and his parents.

Drained and discouraged, Kenneth and Eka dropped their due process case and Chuka never returned to class.

The conflict could have ended there, but Alief Superintendent Louis Stoerner and then board president Sarah Winkler had other plans.

The District sued the economically distressed parents of a special needs child for every penny of the district’s legal expenses, an amount, at the time approaching $170,000 dollars and now estimated at close to a quarter million.

“What I feel is that they are trying to bully me for asking for a chance for my son¿s life,” says Kenneth.

Alief taxpayer and watch dog Bob Hermann sees the lawsuit as senseless and mean spirited.

“I don’t know why we would spend taxpayers money to try and punish somebody who doesn’t have the money and are probably going to win at the end of the day anyway,” says Hermann.

Those who represent special needs families suspect a larger more sinister scheme.

“What they are trying to do is send a chill down parent’s spine about advocating for their children,” says Louis Geigerman, president of the Texas Organization of Parents, Attorneys and Advocates.

“Lets set some examples, lets hang a few of them at high noon right out here in the middle of the town square and show you what we do to people who want to advocate for their children,” adds Kilpatrick.

“If I don’t fight them, you know they are going to do it to other parents,” says Kenneth Chibuogwu.

This past April after three long and expensive years of legal warfare a federal judge here in Houston issued his ruling. Alief I.S.D. was wrong and had no right under the law to collect legal expenses from Chuka’s parents.

Instead of accepting the ruling, superintendent Stoerner and apparently the Alief School board have chosen to risk even more taxpayer dollars and appeal the ruling to the 5th Circuit.

At a board meeting, by phone and by e-mail Fox 26 news has repeatedly asked the Alief decision makers “Why” and have yet to receive an answer.

A district spokeswoman promised comment after the appeals court rules.

“We’ve almost lost everything trying to keep this up,” says Neka.

“What basically there are trying to do is run me and my family on to the street,” says Kenneth

While school expenses are generally available for public inspection Alief has attempted to block our opens records request.

FOX 26 News has however obtained invoices which show the district’s taxpayers have compensated Erik Nikols and his Law firm Rogers, Morris and Grover as much as $12,000 in a single month for waging the three-and-a-half year courthouse campaign against the Chibuougwu’s.

The meter, presumably, is still running.

“I know a lot of people have gained from this, a lot of people have been enriched by this,” says Neka.

As for Chuka, he’s now fourteen, attends no school and for five years hasn’t received a single minute of the free and appropriate public education that is his right

Their child, his parents insist, has been thoroughly left behind.

A look back on autism blogging

6 Oct

A post on Autism Street is entitled “Epilogue“. In it, Do’C gives a look backwards on his experiences online in the past few years. Autism Street was one of my mainstays when I first started reading blogs. Before reading autism blogs I had almost no exposure to blogs. I can’t recall how exactly I got into reading blogs but I recall some of the ones I read.

Obviously, I’ve read Kev’s blogging for some time. I was reading when the domain name was under his name and not LeftBrainRightBrain. I met Do’C once and he asked me how I used to find the blogs to read. I told him that I would take some of the sites with long blog rolls (LBRB being one, Neurodiversity.com being another) and would just go down the blog roll, reading whatever was new on each blog.

A lot of the blogs I’ve read have either stopped or slowed down. A lot of them I don’t remember. But here are some of them.

AutismDiva. The Diva has retired. For those who keep speculating, yes, she is retired and not morphed into some other online persona. The Diva was a persona, not the personality of the actual blogger. The Diva had an amazing wit, and it bothered many who were the target. I think it sometimes masked the fact that the Diva cared a lot about autistic people. The Diva gave me some of the best advice I got as a blogger. One piece was that bloggers should give themselves permission to stop.

I find it very strange that it has been three years since the last Diva post.

Asperger Square 8. A different brand of humor than the Diva, but amazing humor at the same time. Again, the real message was under the humor. Square 8 is not very active these days and I miss that very much.

I recall when Kev first blogged about a Autism News Beat. This is not a high-quantity blog, but again a sharp wit and some amazing pieces. ANB works from a journalist’s perspective. He has attended alt-medicine conferences and reported on them.

A Photon in the Darkness blog is and has been a great resource. Prometheus has been blogging since 2005. Prometheus has an a level of scientific expertise which is rare in blogging. Not absent, but rare.

No blogger is as thorough as Kathleen Seidel at Neurodiversity.com. Her series on the Geier’s revealed questionable institutional review boards, questionable therapies, well, lots of questions about the Geiers. Lots of answers too. Those answers prompted a subpoena from a vaccine-injury lawyer who often hires the Geier team. A subpoena which was quashed, but not until after it made nationwide news.

The Autism Natural Variation blog is and has been one of my favorites. There was a time when every three months the California Department of Developmental Services would put out new statistics. David Kirby and Rick Rollens would immediately use those statistics to claim that vaccines cause autism, and Joseph and Do’C would desconsruct the spin. I recall one time when Mr. Kirby and Mr. Rollens couldn’t agree. One claimed that the autism count went down, one claimed that the count went up. Both claimed this as proof that vaccines cause autism. Joseph and Do’C were always there and always solid with responses.

I could go on and on. There have been so many really good blogs. The ones above are just the few that came readily to mind. What strikes me is that the ones that did come readily to mind are blogs which have largely dropped off in output over time.

What is very interesting at this time is the reformulation of the Autism Hub. Many of the older blogs, some very good newer ones. One new one that caught my eye is Corina Becker’s “No Stereotypes Here” and another “new” blog is Kristina Chew’s “We go with him“. Krisina Chew amazed me with her prolific blogging in her old blog.

The above are just observations and memories, not a list of “top” blogs or anything of that sort. Just a few of those which stand out in my memory today. Tomorrow the list may be different.

Sibling Recurrence and the Genetic Epidemiology of Autism

5 Oct

As if to follow up on the Social Demographic Change and Autism paper we recently discussed here on LeftBrainRightBrain, a new paper on autism recurrence risk in families came out today. Sibling Recurrence and the Genetic Epidemiology of Autism is from a team from the Kennedy Krieger Institute at the Johns Hopkins University. From the abstract I would guess that the study uses the IAN Database.

The authors find about 11% recurrence risk, much higehr than the prevalence of autism (about 1%) and quite similar to that of the Bearman group. Further, the Kennedy Kreiger team find that about 20% of non-autistic siblings have a history of language delay.

Am J Psychiatry. 2010 Oct 1. [Epub ahead of print]
Sibling Recurrence and the Genetic Epidemiology of Autism.

Constantino JN, Zhang Y, Frazier T, Abbacchi AM, Law P.

Departments of Psychiatry and Pediatrics, Washington University School of Medicine, St. Louis; the Center for Autism, Cleveland Clinic, Cleveland; and the Kennedy Krieger Institute, Medical Informatics, Baltimore.
Abstract

Objective: Although the symptoms of autism exhibit quantitative distributions in nature, estimates of recurrence risk in families have never previously considered or incorporated quantitative characterization of the autistic phenotype among siblings. Method: The authors report the results of quantitative characterization of 2,920 children from 1,235 families participating in a national volunteer register, with at least one child clinically affected by an autism spectrum disorder and at least one full biological sibling. Results: A traditionally defined autism spectrum disorder in an additional child occurred in 10.9% of the families. An additional 20% of nonautism-affected siblings had a history of language delay, one-half of whom exhibited autistic qualities of speech. Quantitative characterization using the Social Responsiveness Scale supported previously reported aggregation of a wide range of subclinical (quantitative) autistic traits among otherwise unaffected children in multipleincidence families and a relative absence of quantitative autistic traits among siblings in single-incidence families. Girls whose standardized severity ratings fell above a first percentile severity threshold (relative to the general population distribution) were significantly less likely to have elicited community diagnoses than their male counterparts. Conclusions: These data suggest that, depending on how it is defined, sibling recurrence in autism spectrum disorder may exceed previously published estimates and varies as a function of family type. The results support differences in mechanisms of genetic transmission between simplex and multiplex autism and advance current understanding of the genetic epidemiology of autism spectrum conditions.

← Older Entries
Newer Entries →