Archive | July, 2011

Letter to Massachusetts DDS Commissioner Urging Elimination of Electric Shock, Other Aversives

19 Jul

The National Council on Disability (NCD) has sent a letter to the Massachusetts Department of Developmental Services Commissioner on electric shocks and other aversives. Massachusetts is the home of the Judge Rotenberg Center which uses electric shocks as a main part of their program.

July 18, 2011

Elin Howe, Commissioner
Department of Developmental Services
500 Harrison Avenue
Boston, Massachusetts 02118

COMMENTS OF THE NATIONAL COUNCIL ON DISABILITY IN SUPPORT OF PROPOSED AMENDMENTS TO REGULATIONS ON BEHAVIOR MODIFICATION AT 115 CMR 5.14[i]

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other Federal agencies regarding laws, policies, practices, and procedures affecting people with disabilities. NCD strongly opposes the use of aversive treatments and accordingly submits these comments.

NCD has a longstanding history of opposing aversive treatments.[ii] As stated in NCD’s 1995 Report Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children,

While it is possible to understand the desperation of these parents, to share their exasperation with ineffective programs and treatments, and to sympathize with them in their frustration to locate appropriate programs, there are limits to what society can permit in the name of treatment. There are those in our society who would advocate for severe physical punishment or even the mutilation of prisoners convicted of what everyone would agree are heinous crimes. Yet these prisoners are afforded protection under the law from this treatment, even though there are those who would claim that such treatment would “teach them a lesson.” Students with severe behavioral disabilities are not criminals, and yet present law allows them to be subjected to procedures which cannot be used on the most hardened criminals, or, in some cases, even on animals.[iii]

NCD applauds the Massachusetts Department of Developmental Services (DDS) for taking steps toward drastically restricting use of aversive punishment, and we urge complete elimination of such methods. The use of electric shock is not a legitimate method of treatment for any person. Such measures – whose use against non-disabled individuals is already recognized as illegal and immoral – are contrary to the letter and the spirit of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We urge the Department of Developmental Services to protect both future students and current ones from the use of contingent electric shock and all other such aversive techniques.

In light of the effect on children and youth and with disabilities nationwide, NCD is gravely concerned by the use of aversive treatments at the Judge Rotenberg Center (JRC), in Canton, Massachusetts — the only known school in the United States to provide such treatment. We are aware that students from an estimated 17 other states and the District of Columbia attend JRC and are therefore potential recipients of such aversive treatments.[iv] As such, NCD views this as a significant issue of national importance.

The treatment being provided at JRC is contrary to federal policy and the findings of mental health research. The 2003 President’s New Freedom Commission on Mental Health stated that restraint will be used only as safety interventions of last resort, not as treatment interventions.[v] Similarly, the US Department of Health and Human Services Substance Abuse (HHS) and Mental Health Administration (SAMHSA) has found that seclusion and restraints are detrimental to the recovery of persons with mental illnesses.[vi]

The practices of JRC are equally contrary to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which states in part:

“…The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that… meet minimum standards relating to- provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population… and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program…” (emphasis added).[vii]

The objectionable practices at JRC have not only attracted national attention but have also been scrutinized internationally. According to the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, “. . . the term torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted . . . for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with consent or acquiescence of a public official or other person acting in an official capacity.”[viii]

In April 2010, Disability Rights International (formerly Mental Disability Rights International) issued an urgent appeal to the United Nations Special Rapporteur on Torture concerning the practices at JRC.[ix] Subsequently, in June 2010, the United Nations Special Rapporteur on Torture stated that the practices of the Judge Rotenberg Center in Canton, Massachusetts equate to torture and urged the US government to appeal.[x] The US Department of Justice (DOJ) is now investigating these, and other, allegations.[xi]

The regulations proposed by the Department of Developmental Services (DDS) send a strong message that aversive treatment should not be readily provided, but they must go further. It is critical that the DDS address the concerns identified here and supplement its regulations accordingly.

Thank you for considering our comments and recommendations. NCD stands ready to assist you in ways that our collaboration can best benefit students with disabilities and their families while promoting safe learning environments for all students across America. We are available to discuss these matters at your earliest convenience. Please contact me through NCD’s offices at (202) 272-2004.

Respectfully,

Ari Ne’eman
Policy and Program Evaluation Committee Chair
National Council on Disability

[i] With thanks to NCD Council Member Marylyn Howe and NCD Staff Robyn Powell for their invaluable support and assistance in research and drafting.

[ii] National Council on Disability, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves (2002), available at http://www.ncd.gov/publications/2000/Jan202000; National Council on Disability, Improving the Implementation of the Individuals with Disabilities Education Act: Making Schools Work for All of America’s Children (1995), available at http://www.ncd.gov/publications/1995/09051995.

[iii] Id.

[iv] CNN, New York Education Officials Ban Shock Therapy (2006), available at http://articles.cnn.com/2006-06-21/politics/shock.therapy.school_1_shock-therapy-electric-shock-geds?_s=PM:EDUCATION.

[v] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[vi] Id.

[vii] 42 U.S.C. § 15009(a)(3)(B)(i-iii) (2000).

[viii] UN General Assembly, Convention Against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Article 1(1), 10 December 1984, United Nations, Treaty Series, vol. 1465, p. 85, available at http://www.unhcr.org/refworld/docid/3ae6b3a94.html.

[ix] Mental Disability Rights International, Torture Not Treatment: Electric Shock and Long-Term Restraint in the United States on Children and Adults with Disabilities at the Judge Rotenberg Center (2010), 12, available at http://www.disabilityrightsintl.org/wordpress/wp-content/uploads/USReportandUrgentAppeal.pdf.

[x] ABC News/Nightline, UN Calls Treatment at Mass. School ‘Torture’ (2010), available at http://abcnews.go.com/Nightline/shock-therapy-massachussetts-school/story?id=11047334.

[xi] US Department of Justice, Assistant Attorney General for the Civil Rights Division Thomas E. Perez Speaks at the National Council on Independent Living Annual Conference (2010), available at http://www.justice.gov/crt/opa/pr/speeches/2010/crt-speech-100719.html.

Tomorrow: Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

18 Jul

The Interagency Autism Coordinating Committee (IACC) will hold a full committee meeting tomorrow, July 19th. The details are below and here.

The current version of the IACC was formed as part of the Combating Autism Act. That law sunsets in September and there is currently no reenactment legislation authorized. So, there is a possibility that this could be the last IACC meeting.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Reminder: Please join us for an IACC Full Committee meeting that will take place on Tuesday, July 19, 2011 from 10:00 a.m. to 5:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC meeting will feature invited speakers and discussion of committee business items including the 2011 IACC Summary of Advances, subcommittee activities related to seclusion and restraint, and an update on plans for the Fall 2011 IACC Services Workshop.

Meeting location:
The Bethesda Marriott – Google map imageMap and Directions
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 800-369-1814
Access code: 7791752

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism

18 Jul

The results of the long-awaited California Autism Twin Study (CATS) have been published. The article, Genetic Heritability and Shared Environmental Factors Among Twin Pairs With Autism appears in the Archives of General Psychiatry and is open-access (i.e. free). The study set out “To provide rigorous quantitative estimates of genetic heritability of autism and the effects of shared environment.”

The basic idea of a twin study is fairly straighforward: “identical” (or monozygotic, MZ) twins share 100% of their DNA, “fraternal” (dizygotic, or DZ) twins share about 50% of their DNA. If a condition is purely genetic, identical twins will both have the condition or not have the condition. The percentage of twins with a condition is called concordance. High concordance implies a highly genetic condition.

Early twin studies showed a high concordance. These studies were relatively small. The first study, Infantile autism: a genetic study of 21 twin pairs, was published in 1977 and included, as you might guess, only 21 twin pairs. Of these, 10 DZ and 11 MZ twins. There were three twin studies which made up the main body of knowledge suggesting a strong heritability of autism, including a total of 56 pairs.

The California Twin study sought to take a much closer look. First by including a much greater number of twin pairs, and second by including modern diagnostic methods. They used the California Department of Developmental Services as a resource to identify twin pairs with at least one autistic. The CDDS database has advantages and disadvantages. First, the database is large and covers fairly diverse state. This is important when you consider that (a) only about 1% of the population is autistic and (2) only about 3.2% of the population are twins. That means about 1 in 3000 are twins+autistic.

The disadvantages of the CDDS as a resource include the fact that not everyone with an ASD qualifies for services or is correctly classified. Of those who qualify, inclusion in the CDDS is voluntary. Technically, the CDDS serves only those with autistic disorder or those in the “fifth category” which includes “…disabling conditions found to be closely related to mental retardation or requiring treatment similar to that required for individuals with mental retardation.” This would limit the ability to identify ASD concordance. For example, twins who both have Asperger syndrome.

One major strength of the study was the use of clinical assessments plus parent interviews for diagnosis. They did not rely upon the CDDS reports for diagnoses. Also, the study determined twin status (MZ or DZ) through genetic testing, something which wasn’t available when the first twin studies were performed.

Here is the abstract for the study:

Context Autism is considered the most heritable of neurodevelopmental disorders, mainly because of the large difference in concordance rates between monozygotic and dizygotic twins.

Objective To provide rigorous quantitative estimates of genetic heritability of autism and the effects of shared environment.

Design, Setting, and Participants Twin pairs with at least 1 twin with an autism spectrum disorder (ASD) born between 1987 and 2004 were identified through the California Department of Developmental Services.

Main Outcome Measures Structured diagnostic assessments (Autism Diagnostic Interview–Revised and Autism Diagnostic Observation Schedule) were completed on 192 twin pairs. Concordance rates were calculated and parametric models were fitted for 2 definitions, 1 narrow (strict autism) and 1 broad (ASD).

Results For strict autism, probandwise concordance for male twins was 0.58 for 40 monozygotic pairs (95% confidence interval [CI], 0.42-0.74) and 0.21 for 31 dizygotic pairs (95% CI, 0.09-0.43); for female twins, the concordance was 0.60 for 7 monozygotic pairs (95% CI, 0.28-0.90) and 0.27 for 10 dizygotic pairs (95% CI, 0.09-0.69). For ASD, the probandwise concordance for male twins was 0.77 for 45 monozygotic pairs (95% CI, 0.65-0.86) and 0.31 for 45 dizygotic pairs (95% CI, 0.16-0.46); for female twins, the concordance was 0.50 for 9 monozygotic pairs (95% CI, 0.16-0.84) and 0.36 for 13 dizygotic pairs (95% CI, 0.11-0.60). A large proportion of the variance in liability can be explained by shared environmental factors (55%; 95% CI, 9%-81% for autism and 58%; 95% CI, 30%-80% for ASD) in addition to moderate genetic heritability (37%; 95% CI, 8%-84% for autism and 38%; 95% CI, 14%-67% for ASD).

Conclusion Susceptibility to ASD has moderate genetic heritability and a substantial shared twin environmental component.

The concordance values are 77% for male MZ twins and 50% for female MZ twins. These values are high. But the heritability estimates are influenced not just by the MZ twin concordance, but by the difference between MZ and DZ concordance. Consider if 100% of “identical” twins had a condition. This doesn’t necessarily mean that the condition is fully caused by hertiablity if, say, 100% of the “fraternal” twins also had the condition. In the California Twin study, DZ concordance values were relatively high (31% for males and 36% for females).

Based on these values, the authors calculate that shared environment accounts for 55% of the risk of autism and 37% for genetic heritability. There are big “error bars” (or confidence intervals) for the concordance and heritablity values. It is worth noting that the concordance values here are similar to those reported recently by Bearman’s team at Columbia (40-50% pairwise concordance for MZ twins. This study also used the CDDS as a resource, but did not use clinical assessments) and Goldsmith’s group at the University of Wisconsin (43% pairwise concordance). These studies also concluded that genetic heritability was lower than previously thought.

The authors concluded their paper:

Our study provides evidence that the rate of concordance in dizygotic twins may have been seriously underestimated in previous studies and the influence of genetic factors on the susceptibility to develop autism, overestimated. Because of the reported high heritability of autism, a major focus of research in autism has been on finding the underlying genetic causes, with less emphasis on potential environmental triggers or causes. The finding of significant influence of the shared environment, experiences that are common to both twin individuals, may be important for future research paradigms. Increasingly, evidence is accumulating that overt symptoms of autism emerge around the end of the first year of life. Because the prenatal environment and early postnatal environment are shared between twin individuals, we hypothesize that at least some of the environmental factors impacting susceptibility to autism exert their effect during this critical period of life. Nongenetic risk factors that may index environmental influences include parental age, low birth weight, multiple births, and maternal infections during pregnancy. Future studies that seek to elucidate such factors and their role in enhancing or suppressing genetic susceptibility are likely to enhance our understanding of autism.

The authors can be heard on KQED in San Francisco discussing the paper.

http://www.kqed.org/assets/flash/kqedplayer.swf

In a companion commentary on Archives of General Psychiatry, Is Autism, at Least in Part, a Disorder of Fetal Programming?, Peter Szatmari comments on the shift in perception based on the new heritability estimates: “The autism field can now join the chorus and ask, “Where did all the heritability go?” We now appear to have an answer, at least in part: those original estimates were inflated.”

“Inflated” seems a bit of a loaded word. There are big error bars on the current study, there were even bigger ones in the old studies. What I found very interesting was this peak at an upcoming paper by the Baby Siblings Research Consortium:

The high DZ concordance rate is consistent with estimates reported from the Baby Siblings Research Consortium. In these studies, infant siblings of children with ASD are followed up from birth to age 36 months so that risk can be calculated in a prospective fashion. The latest report from the Baby Siblings Research Consortium suggests that the risk is upwards of 20%, which is slightly less than the DZ rate provided by Hallmayer and colleagues (31%-36% for ASD). The confidence intervals of the estimates overlap to be sure, but this may also suggest potential ascertainment bias for concordant as opposed to nonconcordant DZ twin pairs or that twinning itself is a risk factor for ASD.

(reference: Ozonoff S, Young G, Carter AS, Messinger D, Yirmiya N, Zwaigenbaum L, Bryson SE, Carver L, Constantino J, Dobkins K, Hutman T, Iverson J, Landa R, Rogers S, Sigman M, Stone W. Recurrence risk for autism spectrum disorders: a Baby Siblings Research Consortium Study. Pediatrics. In press.)

They commentary poses some good questions about potential bias in the California Autism Twin Study:

One must ask whether there was any bias artificially reducing concordance in the study by Hallmayer and colleagues. One possibility is missing data, which are substantial. Another possibility is differential misclassification. It is not inconceivable that parents are more likely to rate MZ twins with a disability as more dissimilar than DZ twins. There may be an unconscious effort on their part to see one twin as less affected than the other. Such reporting effects, known as sibling deidentification, have been reported for twin studies of temperament.8 It would be extremely interesting to see whether concordance rates differ by instrument, ie, the Autism Diagnostic Interview–Revised, which is based on parental report, vs the Autism Diagnostic Observation Schedule, which is based on an independent observer. If the sensitivity of the measurement tool is less in MZ twins than in DZ twins, a smaller difference in observed concordance rates would be expected compared with true concordance rates based on no measurement error.

and:

A third threat to the validity of the findings is that twinning itself might be a risk factor for ASD, so that the heritability estimates generated would not be generalizable to the population of nontwin children with ASD. There may be some factor associated with twinning such as maternal age, coming from a monochoreonic placenta, prematurity, or in vitro fertilization that could place twins at risk for ASD. There is in fact some evidence that twins have a higher rate of autism than nontwins,9 but further work needs to be undertaken to provide better evidence.

It’s taken 34 years since the first autism twin study until the much larger California Autism Twin Study. This has been a time consuming and expensive undertaking. I doubt there will be a chance in the near future for a larger study to address the issues laid out above. This doesn’t preclude some other studies to clarify some questions, but the California Autism Twin Study will likely stand for some time before being challenged or confirmed.

iPads and the cheapskate, fearful autism father perspective

15 Jul

Ipads. They have gotten a lot of press in regards to helping autistics. I agree, they are a very good bit of technology. They give a piece of independence to many who might not be able to achieve it otherwise. There is no mouse, no need for typing for many things, an intuitive interface. What’s not to love?

Two things come readily to mind:

1) for the cheapskate in me, there is the cost. iPads run from about $500 on up.

2) for the fearful father in me: dang those things look fragile. They are relatively tough, sure. But read this post by Shannon Des Roches Rosa: iPad Destruction and Salvation. It is a story of fear, pain, redmeption, heroes…everything you could ask for in a blog post.

You see, those big, flat, beautiful screens are glass. Glass breaks. Sure, you can get one of those covers. The silicone ones run about $30 (see point one above: Sullivan the cheapskate). They give some protection and some peace of mind. But, still. They can come off. And there is a certain terror even with the cover on when you see a kid wandering off carrying an iPad by a corner across a tiled floor.

Yes, screens can be replaced. No, they can’t always be replaced. And, face it, Shannon was pretty darned lucky.

Here’s another option to consider that helps both (1) cheapskate-ism and (2) fear. Some places sell iPods and iPads that are refurbished. (team cheapskate approved!). Further, you can get protection plans. Including “accidental damage”. Here’s the language from Overstock.com’s accidental damage policy:

The Platinum Protection Plan protects against those unexpected spills, drops, and accidental handling, as well as mechanical or electrical failures. Platinum Protection coverage includes:

Unintentional spills
Unintentional drops & impacts
Screen damage for products w/LCD screens
Cracked lens for electronics w/lenses
Failures caused by defects in workmanship and materials
Damage caused by power surges

They don’t have iPads at the moment, but I recall seeing them a few weeks ago. There must be other places like this as well. I would double and triple check that the policy would cover accidental damage to the iPad screen before buying.

I checked with the chat feature today and here’s what they said:

Visitor: Does the platinum protection plan cover damage to ipads?
Visitor: I see: The plan will cover accidental damage only on laptops and hand- held electronics such as MP3 Players.

Visitor: Does an iPad count as “hand held electronics” or laptop?
Overstock.com: Yes, if it is offered for the item it will cover it. If there is no option to add the protection plan to the item then it would not be covered.

You might get overstock.com credit rather than a replacement, but that’s better than a dead iPad sitting in a closet mocking you.

I haven’t tested this, so again I urge people to make it clear in advance. And, in case anyone is wondering, the only connection I have to Overstock.com is as a consumer. I only use them as a ready example because I remember going through this pain 2 years ago when I purchased a refurbished iPod touch.

What’s up with Fox News and promoting bad autism science and medicine

15 Jul

OK, it’s anecdotal. But from my perspective of all the networks, Fox just seems to be the most open to bad science and medicine reporting. CBS has Sharyl Attkisson, and her work has been far from excellent over the years. But Fox just seems to be the “go-to” news outlet for those pushing vaccine causation and unproven medical treatments.

Case in point, Fox 9 in the Twin Cities. A recent story: Investigators: Hyperbaric Autism Care.

http://www.myfoxtwincities.com/video/videoplayer.swf?dppversion=10588

Investigators: Hyperbaric Autism Care: MyFoxTWINCITIES.com

There just isn’t any evidence that HBOT works for autism. There isn’t even a good theory for why it would work. Listen to the story, they basically have it right: the brain will absorb more oxygen. In turn this will help treat autism.

That’s about it for the theory: oxygen should be good. More should be better. I.e. hyperbarics will treat autism. When it goes by fast, it sounds like they have some idea what they are talking about. But there isn’t anything there.

Generation Rescue: taking another small step away from the brink?

14 Jul

Generation Rescue has over the years been one of the more vocal promoters of the vaccines-cause-autism notion. Like any organization, they have changed over the years and their website reflects that. Their website started out with the title “Autism Mercury Chelation” and a very simple (and wrong) statement:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger’s, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning.

Of course, later during the early years of Jenny McCarthy, when Generation Rescue became “Jenny McCarthy’s autism organization. By this point, GR had a prominent link on the main page to “vaccines”. This included a page with Generation Rescue recommended vaccine schedules. Their “favorite” being a schedule that offered no protection against many diseases, including measles, mumps, rubella, pertussis, diptheria and tetanus.

They had a page of “science”, including statements claiming that Andrew Wakefield’s 1998 paper linked MMR to autism (a position Mr. Wakefield has tried to distance himself from in the past few years):

“This study demonstrates that the MMR vaccine triggered autistic behaviors and inflammatory bowel disease in autistic children.”

They had a science advisory board, which included S. Jill James, Ph.D., Richard Deth, Ph.D., Woody R. McGinnis, M.D. and Jerry Kartzinel, M.D.. Not exactly heavy hitters, but at least a couple of people who actually publish in journals.

Times have changed again. The website is revamped. And vaccines seem to be much less prominent. For example, in the current version of the Generation Rescue website, I can’t find “recommended” vaccine schedules (they refer people to Dr. Bob Sears). A search for Wakefield shows he is only mentioned once “Studies by researchers: Horvath, Wakefield, Levy, and Kushak highlight a myriad of gut problems present in children with autism, including abnormal stool (diarrhea, constipation), intestinal inflammation, and reduced enzyme function”. The science advisory board is down to one person (Jerry Kartzinel) and an unnamed “cohesive group of professionals committed to healing and preventing autism”.

Sure, it’s still not a place I would recommend to anyone, especially a parent who just found out their kid is autistic. But just a few short years ago the trajectory was increasing with the vaccine discussion, not decreasing.

Please, let’s not invoke the God of vengence in autism discussions

12 Jul

There have been times when I have had the opportunity to stand up and make a clear statement, and yet I failed to do so and lived to regret it. One case that stands out right now is when the blogger erv called Kent Heckenlively of the Age of Autism blog “you sick fuck“. That incident stands out because now I am faced with another challenge: do I stand up to what I see as dangerous speech, this time by Mr. Heckenlively himself?

In an article, When I Can Do Nothing, Mr. Heckenlively writes:

And yet, as thankful as I am for an understanding of what has happened to my child and so many others, my heart is heavy. The Dark Forces which in the past have destroyed the careers of those who have found clues to the afflictions of our children and other disease communities are once again on the move. You may very well read about their actions this week. And I can’t do anything to stop them.

The pain Mr. Heckenlively is feeling is palpable in that paragraph. I feel for him. I really do. At the same time I was quite worried by the choice of the phrase “Dark Forces”. Had the article stopped there, I would not be writing this response.

Mr. Heckenlively goes on to write how he sought guidance from the Bible. Nothing inherently worrisome about that:

I often find myself pondering such questions of faith. What is it I’m meant to do? I want to rush the barricades, but to what effect? It was with such thoughts in my mind I went to our local bookstore, picked up a Bible, opened it to a random page, and with my eyes closed, put my finger down.

The passage he found at random?

Psalm 94 – God, the Avenger of the Righteous

Perhaps now you see why I chose to write a response. Invoking God to bring forth vengeance is troublesome to me.

Here is the version (the language differs according to the bible translation) of Psalm 94 Mr. Heckenlively quotes in his piece:

O’Lord, you God of vengeance, you God of vengeance, shine forth! Rise up, O judge of the earth; give to the proud what they deserve! O’ Lord, how long shall the wicked exult?

They pour out their arrogant words; all the evildoers boast. They crush your people, O’Lord, and afflict your heritage. They kill the widow and the stranger, they murder the orphan, and they say, “The Lord does not see; the God of Jacob does not perceive.

Understand, O dullest of the people; fools, when will you be wise? He who planted the ear, does he not hear? He who formed the eye, does he not see? He who disciplines the nations, he who teaches knowledge to humankind, does he not chastise? The Lord knows our thoughts, that they are but an empty breath.

Happy are those whom you discipline, O Lord, and whom you teach out of your law, giving them respite from days of trouble, until a pit is dug for the wicked. For the Lord will not forsake his people; he will not abandon his heritage; for justice will return to the righteous, and all the upright in heart will follow it.

Who rises up for me against the wicked? Who stands up for me against evildoers? If the Lord had not been my help, my soul would soon have lived in the land of silence. When I thought, “My foot is slipping,” your steadfast love, O Lord, held me up. When the cares of my heart are many, your consolations cheer my soul.

Can wicked rulers be allied with you, those who contrive mischief by statute? They band together against the righteous, and condemn the innocent to death.

But the Lord has become my stronghold, and my God the rock of my refuge. He will repay them for their iniquity and wipe them out for their wickedness; the Lord God will wipe them out.

Mr. Heckenlively concludes his article:

God knows there are some wicked people out there trying to keep our children from getting better. If you’re listening God, and it meets with Your approval, this week would be an excellent time to deal with them.

I don’t know what Mr. Heckenlively means precisely by “deal with them”. But he has just quotes scripture ” He will repay them for their iniquity and wipe them out for their wickedness; the Lord God will wipe them out.”

Here is a comment allowed through by the Age of Autism moderators:

Can he just get on with the smiting

Which tells me that the message is being received: God should smite those who are seen as “wicked”.

Mr. Heckenlively: I wish you and your family well. I truly mean that. I also would strongly encourage you to step back and rethink the post you have put up. Look at the language: “He will repay them for their iniquity and wipe them out for their wickedness; the Lord God will wipe them out.” Ask yourself, ask a trusted friend outside of the autism communities: is this something you should have published?

Mr. Heckenlively, I know it wasn’t easy for you to write what you did. It is not easy to write this response. Finding a tone that remains respectful while voicing my very real concern for the message you are sending is difficult to say the least. I hope that both of us can take down our posts very soon.

Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

11 Jul

The idea that mercury causes autism has been around for over 10 years now. The data have been overwhelmingly against the hypothesis. The risk of autism doesn’t increase with thimerosal exposure from vaccines (e.g. Prenatal and infant exposure to thimerosal from vaccines and immunoglobulins and risk of autism and a number of other studies.) There are still groups which promote the idea, and there are still studies being performed. Case in point, a new study: Heavy Metal in Children’s Tooth Enamel: Related to Autism and Disruptive Behaviors?

The idea is straightforward and one that has been used to promote the idea of vaccine/thimerosal causation. If baby teeth have a different level of mercury, that might say something about whether the child was (a) exposed to high levels of mercury and/or (b) whether the child was more or less able to excrete mercury.

Here is the abstract of the study:

To examine possible links between neurotoxicant exposure and neuropsychological disorders and child behavior, relative concentrations of lead, mercury, and manganese were examined in prenatal and postnatal enamel regions of deciduous teeth from children with Autism Spectrum Disorders (ASDs), high levels of disruptive behavior (HDB), and typically developing (TD) children. Using laser ablation inductively coupled plasma mass spectrometry, we found no significant differences in levels of these neurotoxicants for children with ASDs compared with TD children, but there was marginal significance indicating that children with ASDs have lower manganese levels. No significant differences emerged between children with HDB and TD children. The current findings challenge the notion that perinatal heavy metal exposure is a major contributor to the development of ASDs and HDB.

Basically, the levels of mercury and lead were the same for autistic kids as for non-autistic kids. There may be lower levels of manganese.

This isn’t the strongest, nor is it the last, study on mercury and autism. But, yet again, the evidence comes in against the idea that autism is caused by mercury.

The Measles Initiative and the myth of mild measles

9 Jul

Advance warning: this post has basically nothing to do with autism. It is about a group called the Measles Initiative. I found the site for the Initiative while looking for information about the effects of measles in the non-developing world. There have been outbreaks in France, for example, in recent years. Large enough outbreaks that people have died.

Here is a figure from a presentation given by Daniel Floret of the Claude Bernard University Lyon and Chairman of the French NITAG and of the French Working group on measles elimination.

Yes, even in modern times, in developed countries like France, measles can kill. Unfortunately, segments of the autism communities play an active role in disseminating the misinformation about measles (downplaying the risk) and the vaccine (inflating the risk).

One thought: you’ve probably seen groups and people on the net claiming that the developing world doesn’t need vaccines. Clean water and/or improved sanitation they say, will suffice. Of course, we would all like to see better water and sanitation worldwide. But next time you see that argument posed, ask yourself, “Has this group ever advocated for or raised money to improve the water or sanitation anywhere?”

In the past 10 years there has been a major initiative to increase vaccination rates in Africa. This has had a major impact, with measles deaths dropping by 90%. The World Health Organization announced the success of this effort in a press release, Measles deaths in Africa plunge by 91%.

Measles deaths in Africa fell by 91% between 2000 and 2006, from an estimated 396 000 to 36 000, reaching the United Nations 2010 goal to cut measles deaths by 90% four years early. The spectacular gains achieved in Africa helped generate a strong decline in global measles deaths, which fell 68% worldwide – from an estimated 757 000 to 242 000 – during this period.

Unfortunately there hasn’t been a strong focus on measles reduction in South Asia, and measles deaths have not changed. The following image shows that as the number of deaths have dropped in Africa, they have not dropped in south Asia.

It really bothers me that so much of the bad information about vaccination comes from a segment of the autism communities. It bothers me that this misinformation puts people at risk. There is a real risk of injury and death, even in the developed world as we can see from the data from France. Measles vaccines work. They prevent deaths. And, while I haven’t gone into it in this discussion, the MMR-causes-autism notion has been tested carefully and it is wrong.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

8 Jul

The title for this article should have a question mark, “A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population?”. The paper’s faults have already been discussed, but I was unable to sleep earlier this week and I decided to graph some of the data. For some reason, even this didn’t help me to sleep.

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

here is the abstract:

The reason for the rapid rise of autism in the United States that began in the 1990s is a mystery. Although individuals probably have a genetic predisposition to develop autism, researchers suspect that one or more environmental triggers are also needed. One of those triggers might be the battery of vaccinations that young children receive. Using regression analysis and controlling for family income and ethnicity, the relationship between the proportion of children who received the recommended vaccines by age 2 years and the prevalence of autism (AUT) or speech or language impairment (SLI) in each U.S. state from 2001 and 2007 was determined. A positive and statistically significant relationship was found: The higher the proportion of children receiving recommended vaccinations, the higher was the prevalence of AUT or SLI. A 1% increase in vaccination was associated with an additional 680 children having AUT or SLI. Neither parental behavior nor access to care affected the results, since vaccination proportions were not significantly related (statistically) to any other disability or to the number of pediatricians in a U.S. state. The results suggest that although mercury has been removed from many vaccines, other culprits may link vaccines to autism. Further study into the relationship between vaccines and autism is warranted

The author made a number of strange decisions in this paper, as already discussed (and here, here, and here). First, she chose “autism prevalence” for her title when what she discussed was a combination of autism and speech or language impairment. So, I will put quotes around “autism” in “autism” prevalence, as this isn’t a real autism prevalence. Second, she chose a vaccination rate that is based on 100% completion of the 1995 vaccine schedule. This rate was changing notably, as she starts the study period when the schedule was introduced. So, as states and pediatricians and parents adopted the schedule, the “vaccination rate” as defined by the author increases notably. Again, I will use quotes around “vaccination rate” as this is an odd definition of the term.

Here is the main result of the paper:

The results suggest that if a given U.S. state has a 1% higher vaccination rate than another U.S. state, then the state with the higher vaccination rate might have, on average, a 1.7% higher prevalence of autism or speech disorder

With more than 4 × 10^6 babies born in the United States each year, this finding translates into an additional 680 children (= number of children [4 × 10^6] × coefficient [0.017] × 1% [0.01]) exhibiting autism or speech disorders for every 1% rise in children receiving the 4:3:1:3:3 series of vaccinations by age 2 years.

To put all this simply, the author is claiming that if there is some baseline prevalence of “autism” if the “vaccination rate” is 0, say 5%, then the prevalence rate of “autism” would be 5+1.7=6.7% if the “vaccination rate” were 100%.

One would expect that as “vaccination rates” go up or down, the “autism rate” would go up or down with this proportionality factor. It doesn’t happen that way, though.

The author used household income and ethnicity (%Hispanic, % African America, %Other) as variables in the model. Let’s assume that those numbers don’t change significantly during the time period considered for each state (the author appears to make this assumption, so let’s go with it.)

I took a look at the first 4 states in the table (listed alphabetically): Alabama, Alaska, Arizona and Arkansas. If anyone has a particular interest in any given state, I’ll graph them up (or you can do it yourself).

Here is the “vaccination rate” as a function of study year:

As Prometheus has noted, this rate shows the biggest change in the first two years. Given the result of the study, we should see the biggest changes in “autism rate” in these two years. But we don’t. I took the data for the “vaccine rates” as a function of time and applied the 1.7% increase in “autism” prevalence the author states as a result. Let’s look at these states and what the model predicts and what the actual data showed (click any graph to make bigger):

Alaska:

Alabama:

Arizona:

Arkansas:

The data not follow the predicted trends. Not even close. Not only that, but for two states, the predicted values are higher than the reported values (red curves higher than black) while for the other two states the opposite is seen.

This isn’t a case of “I don’t know how the analysis came to the conclusion but I don’t think it is right” type of paper. This is a case of “how did this get past an editor and referee” type of paper. It is just that clearly wrong.

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