According to the November 15th Slate, Barack Obama needs to choose a cabinet of really smart genius types—that is, with those who are “brilliant—albeit prickly, semi-autistic, and egomaniacal—thinkers”:

The issue starts at the Treasury Department, where the best choice would be former Clinton Treasury Secretary Lawrence Summers. Summers is the outstanding international economist of his generation, someone whose brilliance is immediately evident in any conversation. …………….

Summers can also be arrogant and politically incorrect. He sometimes does a poor job hiding his contempt for lesser intellects and loves to play the intellectual provocateur. Socially, he can be a bit autistic. But these are the defects of a superior mind, and they are a small price to pay for getting the person most likely to maximize our chances of avoiding a full-scale global depression.
…….
For Education, [Obama] might choose Joel Klein, the chancellor of the New York City school system. Klein has not gone through life making friends, but he has shown himself an unusually shrewd and committed thinker about educational management and reform. Better yet, what about getting Bill Gates to tackle the problem?

If the President-elect takes up Slate’s suggestions, get ready for quips about the genius bar on the Potomac………..

At the risk of being repetitive: Be sure to get your feedback in to the Interagency Autism Coordinating Committee (IACC). Send in what you think about comments about autism services by September 19, and also your comments about the draft of the Strategic Plan for ASD Research by September 30.

Also, you can go here to review the NIH’s Autism Spectrum Disorder Research Portfolio. Last year (FY 2007), the National Institutes of Health (NIH) devoted $127 million to research autism spectrum disorders through “grants, contracts, research projects conducted as part of the NIH Intramural Research Program, and other mechanisms of support.” In addition, NIH invested $3.9 million in the development of the National Database for Autism Research (NDAR). In FY 2006, $108 million was devoted to research on ASD’s. Go here to see the NIH Autism Spectrum Disorder Research Portfolio; this is how much was allotted to various areas of research:

Genetics/Genomics received $20,670,059 in funding; many other research areas also received significant funds. Clinical Neuroscience received $22,407,705; Behavioral/Psychosocial research received $10,275,206; Environmental Influences and Gene X Environment Interplay received $6,672,090; Education and Dissemination received $4,149,842.

Am finishing off my own statement before sending it off to the IACC.

The Interagency Autism Coordinating Committee (IACC) coordinates research and efforts pertaining to autism spectrum disorder (ASD) within the Department of Health and Human Services (DHHS). On August 11th, the National Institute of Mental Health issued a Request for Information (RFI): Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders (ASD):

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

The IACC is looking for your input and ideas about

….high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.

You can send in your responses (limited to one page) to iaccservices@mail.nih.gov , no later than September 19, 2008, and marked with this RFI identifier, NOT-MH-08-016, in the subject line. Responses will be collated, summarized, and provided to the IACC Services Subcommittee and to the public, and the collected information analyzed and used in reports. The Service Subcommittee meets on September 15th to discuss all comments received to date (information here to attend via conference call) and will present these at the next meeting of the IACC, on November 21, 2008.

“Education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning”—these are the issues I’m most concerned about and have been concerned about, and will be writing to the IACC about. The Arizona Republic describes another approach to housing for disabled adults: Placing a child in the home of a home of a licensed caregiver full-time. I read about these arrangements and think, that would never work for Charlie, and I just don’t know, and what will happen when he’s older……. How can we start planning and working to create the best possible life for Charlie and individuals like him, right now and throughout their whole lifespans?

An article in the July 31st American Journal of Human Genetics suggests that mitochondrial DNA (mtDNA) mutations are “common in the general population.” According to the study, one in 200 people has a DNA mutation that could potentially cause a mitochondrial disease in them or in their offspring. Mitochondrial disease is (according to the United Mitochondrial Disease Foundation (UMDF) ) a “devastating and often fatal disease, and mitochondrial disorders are at the core of many well known diseases and chronic illnesses, such as Alzheimer’s disease, Parkinson’s disease and autism spectrum disorders.” Mitochondria are the body’s main energy source; are in almost all of our body’s cells; and produce “more than 90 percent of the energy needed by the body to sustain life and support growth.” While symptoms and the severity of the disease may vary from person to person, symptoms include “difficulty breathing,” “uncontrollable seizures and/or digestive problems,” and not being able “to walk, talk, see or hear.” Mitochondrial disease has been linked to diabetes, cardiovascular disease, Parkinson Disease, Alzheimer Disease, various cancers, multiple sclerosis and lupus.

And, too, autism: 9-year-old Hannah Poling was the child in the case earlier this year in which the government conceded that vaccines had exacerbated her underlying mitochondrial disorder and led to symptoms of autism. In the wake of this announcement, the question of how common are mitochondrial disorders in autistic children keeps recurring, and also whether or not there is some subpopulation of mitochondrial autism. Dr. Jon Poling, a neurologist and the father of Hannah Poling, has argued that mitochondrial disorders “may not be rare at all among children with autism.”

Here’s the abstract for the study from American Journal of Human Genetics:

Mitochondrial DNA (mtDNA) mutations are a major cause of genetic disease, but their prevalence in the general population is not known. We determined the frequency of ten mitochondrial point mutations in 3168 neonatal-cord-blood samples from sequential live births, analyzing matched maternal-blood samples to estimate the de novo mutation rate. mtDNA mutations were detected in 15 offspring (0.54%, 95% CI = 0.300.89%). Of these live births, 0.00107% (95% CI = 0.000870.0127) harbored a mutation not detected in the mother’s blood, providing an estimate of the de novo mutation rate. The most common mutation was m.3243AG. m.14484TC was only found on sub-branches of mtDNA haplogroup J. In conclusion, at least one in 200 healthy humans harbors a pathogenic mtDNA mutation that potentially causes disease in the offspring of female carriers. The exclusive detection of m.14484TCon haplogroup J implicates the background mtDNA haplotype in mutagenesis. These findings emphasize the importance of developing new approaches to prevent transmission.

Again, mitochondrial disease is linked to a number of diseases, with autism spectrum disorder only one among them. Further, the symptoms of mitochondrial disorder are these, according to the UMDF:

loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

Aside from “developmental delays” (not further specified), these are not, in and of themselves, symptoms of autism, whose DSM criteria are here. Mitochondrial disease are linked to diseases ranging from Alzheimer’s to Parkinson’s to diabetes and many others, and autism spectrum disorder is only one among a list. Just how “common” mitochondrial disease is in autistic individuals, remains to be determined, and journalist David Kirby’s pronouncing the new study as “revolutionary” news in the Huffington Post seems characteristically overstated:

…..we can now assume that classic mitochondrial “disease” desrcibed [sic] in this study (via mutations in maternal mitochondrial DNA) and mild mitochondrial “dysfunction” found in Hannah and others (via mutations in paternal nuclear DNA) are both associated with increased risk for autism.

And we can also now assume that neither form of mitochondrial disorder is rare. Moreover, whether the low cellular energy originates in mitochonrial [sic] DNA or nuclear DNA mutations, either way it could confer increased risk for autism.

That would mean a significant number of children between the ages of 1 and 2 who are walking around right now, potentially vulnerable to autistic regression triggered by some acute immune stressor - whether  vaccine related or not.

While Kirby has previously used the first person singular (”In April, I reported that”) in this latest post, in these paragraphs he uses the first person plural (”we can now assume”). No longer are Kirby’s statements to be seen as the speculations of one journalist; they are now, through the use of that “we,” converted into, it seems, the views of people in general and, indeed, the assumptions of people in general (and Kirby includes quotations from scientists and other experts, including the Executive Director and CEO of the UMDF, Charles A. Mohan, Jr., in his post). It thus seems that Kirby is expressing the opinion of people in general, and not only the assumptions that he has made, and presented with his usual rhetorical aplomb.

Say you’re the parent of a child “between the ages of 1 and 2 who [is] walking around right now” and (due to an underlying mitochondrial disorder) “potentially vulnerable to autistic regression triggered by some acute immune stressor”. At this point in the sentence, Kirby slips in mention of vaccines, though these are not mentioned in the UMDF’s summary of the study. Take a good long look at your child “walking around right now,” it is suggested; something may send them into “autistic regression,” Kirby writes, and offers the ominous image of a vaccine, a shot (did someone just write “triggered”?) to make his point.

Kirby ends his post with a further ominous statement:

It would appear that far more lives are at risk for far more diseases (well beyond autism) than we ever imagined.

While a recent study has found that, in a sample of 341 adults diagnosed with autism, atypical autism, childhood disintegrative disorder, and Asperger syndrome, “nearly twice of what is expected in the general population,” autism is not a “disease” that puts one’s life at risk. Epilepsy was the cause of death most reported among the cohort of individuals in the study, as Translating Autism notes in a review of it. It seems that, once again, Kirby is trying to make and even to rebrand autism, and here to suggest that it is a life-threatening condition, like cardiovascular diseases or cancer; to say he’s describing more and more of what might be the causes of autism, while having less and less to say about what autism is itself.

According to the claim that vaccines or something in vaccines can be linked to autism—the source of much discussion and dissent for most of my son’s life—-autistic persons are “damaged” and “injured”; they were once “normal,” “typical” and “ok.” The notion that vaccines or mercury poisoning are the cause of autism not only poses some potential health hazards, but also creates an image of autistic children and adults as “less than [the rest of us]” due to a short; as “damaged goods.” Whereas, genetic studies on the causes of autism suggest that, far from being an “accident” that befalls an up-to-then “normal” family, autism is very much in the family. While neither my husband Jim nor I are autistic, we can detect many points of overlap between our boy and ourselves.

The words one uses to describe and represent autism shape our understanding of it. Last November saw the publication of a book edited by English professor (and father of an autistic son) Mark Osteen, Autism and Representation (full disclosure: I have an essay in it, about poetry, language, and trying to understand my son’s language). A book with a similar title, Representing Autism: Culture, Narrative, Fascination was recently published by Liverpool University Press. It’s written by English professor Stuart Murray who (another disclosure; I must watch my “conflicts of interest” in these conflicted times) I know: He spoke at the 2006 conference on autism and advocacy that my husband organized, and, before that, I responded to a paper that Murray gave on autistic presence and Bartleby the Scrivener (from Herman Melville’s short story).

I still need to read Representing Autism: Culture, Narrative, Fascination and a review (some of it available on Nature) by Simon Baron-Cohen makes me further interested. Writes Baron-Cohen:

According to Murray, whether we are making a film or writing a scientific paper about autism, we are superimposing categories on to it. For example, the major charity for families and individuals with autism in Britain, the National Autistic Society, was founded in 1962 as the Society for Psychotic Children. This shift in the name could have affected what we looked for and what we saw. Similar shifts occurred in the first scientific journal for autism research. Now called the Journal of Autism and Developmental Disorders, it began as the Journal of Autism and Childhood Schizophrenia. These changes signal how we used to believe autism was just the childhood form of schizophrenia, and how we used to think this condition only affected children.

We now know that autism and schizophrenia are distinct.

As Baron-Cohen further writes about Murray’s book, “one narrow slice of the autism spectrum disproportionately dominates public perceptions of the conditions”—-individuals with “savant” skills like Raymond Babbitt in the 1988 movie Rain Man and Christopher Boone in the 2003 The Curious Incident of the Dog in the Night-Time by Mark Haddon. Murray also looks at the “range of representations of autism in fiction” (Spock in Star Trek and Sherlock Holmes), and considers other, popular representations of autism:

Slanted views about autism can even be found in the research community. On the website of Autism Speaks, the major charity funding autism research in the United States, are the words “This disease has taken our children away. It’s time to get them back.” This is as clear a statement as one can find of autism as a disease, a view that many but not all autism scientists would endorse. Contrast this with Amanda Baggs’s online video In My Language (http://tinyurl.com/2pczl2), which she launched as a statement about her civil rights as a person with autism, to be recognized and understood as different but not diseased. Another website, Autistics.org, proudly proclaims that people with autism are simply differently wired, and names one of their online groups the Autistic Liberation Front. These statements, along with Representing Autism, serve as a valuable reminder that we need to challenge how we conceptualize such medical conditions.

I’ve long been fascinated, and sometimes troubled, with the question of representing autism. Charlie has plenty to communicate and not so many words and a lot (most) (all?) of what is known about him is based on what Jim and I say. I wrote about representing Charlie in this rather oldish post. What often fascinates, at times infuriates, and sometimes simply grates on me in reading about various theories of autism causation—let’s say, mercury—is that autistic individuals come across as so passive and so unable to do or be aware of much, and violent toddlers trapped in the body of a 200-pound teenager (as suggested in a recent article). My son has lots, lots, and lots of struggles—piano practice this evening exhausted both of us as Charlie kept squinting and tapping at keys with random fingers—but he is not “mercury poisoned” or something “damaged” or a “tragedy” and the association of these terms with autism limits how people understand autism, and autistic people.

Consier a letter published in the August 7th New England Journal of Medicine by Dr. Jon Poling, the father of Hannah Poling, in response to a May NEJM article by Dr. Paul Offit in which he revisits the case of Hannah Poling. Dr. Poling being the father of Hannah Poling and therefore, assumedly concerned about anyone’s representation of her, writes:

By omitting critical information from my March 6, 2008, statement, Offit misrepresents my position. I said, “Many in the autism community and their champions believe that the result in this case may well signify a landmark decision as it pertains to children developing autism following vaccinations. This still remains to be seen, but currently there are almost 5,000 other cases pending.”

Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.

Offit confuses issues by comparing Hannah’s case with unrelated decisions in “vaccine court.” The Office of the Secretary of DHHS, through the Department of Justice, conceded Hannah’s case. There was no courtroom hearing and no decision from the “unusual vaccine court.”

Dr. Poling takes Dr. Offit to task for, specifically, “misrepresenting” Dr. Poling’s “position,” due in no small part to Dr. Offit not having access tp Hannah Poling “personal medical records” (on the disclosure of which, see this post; only two documents about Hannah Poling have been drawn on by the public, regarding her medical information). Dr. Offit’s conclusions about Hannah Poling are, according to Dr. Poling, “consequently flawed” and Dr. Offit is said to be in error for “confusing” the details of Hannah Poling’s case with those of other “unrelated decisions.” And yet, while depicting the case of Hannah Poling, his daughter, as separate and specific from the cases of other autistic children whose parents say they have been “injured” by vaccine, Dr. Poling writes that there is a “high frequency of mitochondrial dysfunction in autistic children” (he references this study), which would suggest that what caused Hannah Poling to “become” autistic has certain similarities to the situation of other children. Ought there not to be overlaps between the “details of Hannah Poling’s case” with those of other “unrelated decisions”?

Inevitable that any of us are prone to misrepresent Hannah Poling. I for one think (rightly or not) that Jim and I are the “best” at representing Charlie, and yet I wonder how my parental perspective, with its messy foundation of feelings and lots of love and worries about the great unknowns out there, can cause me to see things about Charlie that maybe aren’t exactly so, and thus to “represent” not so much him as he really is, but him as I think he is. And perhaps this is the case for any parent representing their autistic child.

I ought to note, Prof Murray is himself the father of three sons, two on the autism spectrum.

After legislators in Oklahoma did not pass Nick’s Law (which called for insurance coverage for autism treatments) at least one family is leaving the state to get services for their autistic child in another part of the country. Doug and Caroline Hall are moving to Cincinnati for the sake of their 4 1/2 year old son, Dougie. According to the May 30th News OK, the state of Ohio provides up to $20,000 a year for either private school or autism treatment.

We’ve moved and moved in search of the right educational placement and services for Charlie. The biggest move was when we left St. Louis (where Charlie was born) to go back to New Jersey (where my husband is from and where there are a lot of well-established autism schools). While we’ve now found a school district that provides the right school and services for Charlie, we are most likely not done moving. New Jersey’s services for adults (such as housing) are not where they could be. Also, all of my family—including several cousins who are near Charlie in age—live in California and the possibility of us having to move out there when Charlie is an adult often crosses my thoughts.

Small wonder the three of us sometimes feel the most at home on the road in our car.

We’ve had our problems with school districts and at (low) one point took Charlie out of school and homeschooled him for a month back in the fall of 2005. But things were always pretty local. In Louisiana, the St. Landry School Board is being investigated by the US Department of Education. According to WDSU news:

According to a letter from the office of civil rights, the department is investigating whether the board failed to identify Port Barre Elementary School students who need special education services, failed to evaluate students who qualified for services and failed to provide services for the students once they had been identified.

Concerns about the services provided for students with special needs have crossed into the district’s 43-year-old desegregation case.

The complaint originated with Port Barre resident and child advocate Bett Dedon, who contacted U.S. District Court Judge Tucker Melancon, who oversees the desegregation case, about her grandson’s situation at Port Barre Elementary.

Dedon’s grandson has an autism spectrum disorder.

This is what Dedon’s grandson is entitled to according to IDEA 2004, the Individuals with Education Act:

……..a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living.

This is how IDEA describes disability at the very start of the document:

“Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.”

Just to reiterate: All children with disabilities need to have “available to them” an education that is free, appropriate and public and their being disabled—autistic—-”in no way diminishes the right of individuals to participate in or contribute to society” in any, many, and so many ways.

Two comments by officials in two Utah insurance companies suggest how much is still not known about autism. From today’s Salt Lake Tribune:

“Is it even a defined disease? It’s a heart-breaking condition, but they don’t know the etiology, they don’t know the source,” said SelectHealth’s Medical Director Ken Schaechar. Autism is one of five pervasive developmental disorders for which [the insurance company] doesn’t cover diagnosis or treatment.

Yes, autism is “defined”; here’s the DSM criteria. Those criteria are under revision but once you know what autism is, you become much more aware of how much autism there is around you. By providing children with the therapies they need, autism is not at all “heart-breaking”—-not when you hear your child speak and see them learn and grow. The second comment:

Regence BlueCross BlueShield of Utah covers autism diagnosis and treatments for associated problems like anxiety and depression, but it won’t cover therapies because autism can’t be cured, said spokeswoman Tauni Everett.

“We know that eating healthy improves our members’ health, but we don’t pay for groceries. This is really a similar situation,” she said.

Right, autism “can’t be cured” but those therapies can lead to children making real strides with severe communication and behavior problems that impede their ability to achieve their full potential. To say that providing autistic children with therapies is “a similar situation” to paying for groceries belittles the very real needs of autistic children and their families.

A call to New Jerseyans to attend a hearing about Assembly Bill 2238 just came into my Inbox. The bill calls for health insurers to cover certain autism-related therapies and treatment (applied behavioral analysis in particular). The hearing was scheduled at the last minute for Thursday, May 22, 2008 at 2:00pm at the Capitol in Trenton with the Assembly Appropriations Committee; I won’t be able to go (that’s “time to head home to meet Charlie at the bus time”).

But I don’t think those who show up equate what they are doing to shopping for groceries.

On April 11th, a new document in the case of Hannah Poling was filed. The document—Order Deferring Ruling on Petitioners’ Motion for Complete Transparency of Proceedings—-can be read here. The petitioners are Terry Poling and Jon Poling, the parents of “Hannah Poling, a minor.” The respondent is the Secretary of Health and Human Services. The Polings have requested that two Rule 4 Reports filed by the respondent be disclosed. (A Rule 4 Report is filed by respondent in a vaccine proceeding and incorporates medical information pertaining to the petitioner.)

One report states that Hannah’s seizure disorder was “not related to her vaccinations”; the second states that this was the case and that she qualifies for compensation. In late February-early March, it was learned that respondent’s Rule 4 Report had been made “publicly available in an electronic format.” The conclusion of the document is to defer a ruling on the petitioners’ motion for “complete transparency of proceedings”; while both parties express “willingness” to “provide consent,” such has not yet been reached.

Journalist David Kirby wrote his first post about the case of Hannah Poling on February 25th. On February 26th, in a post entitled The Vaccine-Autism Court Document Every American Should Read, Kirby posted (as he writes) a “verbatim copy of the US Government concession filed last November in a vaccine-autism case in the Court of Federal Claims, with the names of the family redacted” and noted that this document was the subject of his February 25th post.

A discussion about the new document is ongoing at Left Brain/Right Brain. I’ve summarized the document below (click on “read more”). A key distinction made in the response to the petitioners, the Polings, is about what constitutes “information” and what is considered “evidence.” Respondent argues that “evidence” is a narrower term and that there is “information” in the reports whose disclosure has “certain limitations” placed on it, in accordance with section 12(d)(4)(A) of the Vaccine Act.

Read more

So what do you do if your state passes autism legislation (as my state, New Jersey, did in September of 2007) and then it gets stalled by budget cuts—-when the bill gets passed but there’s no funding as it’s an austere buget year” ? In Florida, the Window of Opportunity Act was passed by the Senate last week—and today’s Palm Beach Post reports on the hurdles it now faces in the House:

State House leaders acknowledged Monday that the state doesn’t have the money to have Medicaid and Healthy Kids cover all Florida children with autism. But they still oppose the Senate plan that would immediately require private health insurers to cover autism treatment.

Instead, the House wants to “put a mechanism in place” to have autistic kids get coverage through Healthy Kids whenever the money becomes available.

According to Rep. Aaron Bean, R-Fernandina Beach, who headed a House task force on the issue, is proposing another bill, which would “only require insurers to provide autism coverage if the state could not come to an agreement with insurers in two years on how best to cover the children.” The current Senate-backed plan does not, Bean says, cover families with autistic children who “work for self-insured companies which make up about 43 percent of Floridians.”

A South Florida mother commented on an earlier post about the Florida bill that “it will also be a miracle if these bill pass. Similar ones have been introduced here before, only to die.” As I’m reading about the new autism legislation announced today by NJ Senator Robert Menendez, the Helping HANDS for Autism Act, I have her words in mind, and also that

“I for one am making calls to my local politicians to try to show my support.”