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.

Upcoming Joint Conference Call of the IACC Subcommittee on Safety and IACC Services Subcommittee

7 Jul

As noted recently here, there is a conference call meeting for the Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee on Monday. The time has been changed.

UPDATE: TIME CHANGE – Joint Meeting of Interagency Autism Coordinating Committee (IACC) Subcommittee on Safety and IACC Services Subcommittee

Due to a potentially unavoidable schedule conflict on Monday afternoon, the time of the conference call of the IACC Subcommittee on Safety and the IACC Services Subcommittee has changed to 8:00a.m. to 10:00a.m. ET on Monday, July 11, 2011 to ensure that the call will still be able to take place.  We apologize for any inconvenience that may be caused by the time change.  The purpose of the call is to discuss issues related to seclusion and restraint and autism spectrum disorder (ASD).  The Services Subcommittee will also discuss plans for the upcoming IACC Services Workshop/Town Hall that will take place on September 15-16, 2011 in Bethesda, MD.

The conference call will be accessible by the phone number and access code provided below.  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: 888-391-6569
Access code: 3061094

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
IACCpublicinquiries@mail.nih.gov

Is there a backup plan for the Combating Autism Reauthorization Act?

7 Jul

On May 26th, Representative Christopher Smith of New Jersey introduced House Resolution 2005: the Combating Autism Reauthorization Act of 2011 (CARA). This has some momentum, with 38 cosponsors in the house (there are another 21 sponsors in the Senate).

What I found interesting when I searched for the CARA that there are two more bills in the works on autism (both introduced on the same day as CARA): the National Autism Spectrum Disorders Initiative Act of 2011 and the Autism Spectrum Disorders Services Act of 2011.

The Text is below. They are modifications to existing laws, so being out of context they aren’t obvious as to what they are accomplishing. But we can see a few things. The National Autism Spectrum Disorders Initiative Act of 2011 is more thorough. For example, it is the one of the two bills that includes funding levels. The National Autism Spectrum Disorders Initiative Act of 2011 does not authorize money to be appropriated.

The National Autism Spectrum Disorders Initiative Act of 2011 would put coordination of autism research directly under the Secretary of Health and Human Services. The Autism Spectrum Disorders Services Act of 2011 continues the Interagency Autism Coordinating Committee, which currently coordinates autism research in the United States.

Here is bill H.R.2006, (House Resolution 2006),

H.R.2006 — National Autism Spectrum Disorders Initiative Act of 2011 (Introduced in House – IH)

HR 2006 IH

112th CONGRESS

1st Session

H. R. 2006

To establish a National Autism Spectrum Disorders Initiative , and for other purposes.

IN THE HOUSE OF REPRESENTATIVES

May 26, 2011

Mr. SMITH of New Jersey (for himself and Mr. DOYLE) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To establish a National Autism Spectrum Disorders Initiative , and for other purposes.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `National Autism Spectrum Disorders Initiative Act of 2011 ‘.

SEC. 2. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399E (42 U.S.C. 280i-4) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. ESTABLISHMENT OF THE NATIONAL AUTISM SPECTRUM DISORDERS INITIATIVE .

`(a) In General- There is established in the Office of the Secretary of Health and Human Services the National Autism Spectrum Disorders Initiative (referred to in this Act as the `Initiative’ ). The principal goal of the Initiative is to improve the lives of persons with autism spectrum disorders through research focused on prevention, treatment, services, and cures.

`(b) Duties of the Secretary Under the Initiative – The Secretary (or the Secretary’s designee) shall–

`(1) act as the primary Federal official with responsibility for overseeing all research on autism spectrum disorders conducted or supported by the National Institutes of Health;

`(2) approve the strategic plan described in section 399CC(b)(5) and be responsible for its implementation;

`(3) receive directly from the President and the Director of the Office of Management and Budget all funds available for autism spectrum disorder activities of the National Institutes of Health;

`(4) from the amounts received under paragraph (3) for the fiscal year, allocate, in consultation with the Director of the National Institutes of Health, to the agencies of the National Institutes of Health in accordance with the strategic plan all amounts available for such year for carrying out autism spectrum disorder activities;

`(5) to the extent practicable, allocate amounts under paragraph (4) not later than 30 days after the date on which the Secretary receives the amounts described under paragraph (3);

`(6) have authority to reallocate up to 3 percent of the total amount allocated under paragraph (4) as needs change and opportunities arise;

`(7) plan and evaluate research and other activities related to autism spectrum disorders conducted or supported by the agencies of the National Institutes of Health, evaluating the activities of each of such agencies and providing for the periodic reevaluation of such activities;

`(8) maintain communications with all relevant departments and agencies of the Federal Government to ensure the timely transmission of information concerning autism spectrum disorders ; and

`(9) carry out this subsection in consultation with the heads of the agencies of the National Institutes of Health, with the advisory councils of such agencies, and with the Interagency Autism Coordinating Committee.

`(c) Sunset Provision- This section shall not apply after the date that is 7 years after the date of the enactment of this section.’.

SEC. 3. ACTIVITIES OF THE NATIONAL INSTITUTES OF HEALTH WITH RESPECT TO AUTISM SPECTRUM DISORDERS .

Section 409C of the Public Health Service Act (42 U.S.C. 284g) is amended–

(1) in subsection (a)(1), by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’;

(2) in subsection (b)–

(A) in paragraph (2)–

(i) by striking `basic and clinical research’ and inserting `basic, clinical, and translational research’; and

(ii) by inserting `, building upon the recommendations set forth in the most recent strategic plan for autism spectrum disorders of the Interagency Autism Coordinating Committee established under section 399CC’ before the period at the end of the second sentence; and

(B) by adding at the end the following:

`(6) DEFINITION- In this section, the term `translational’, with respect to research, means emphasizing the development and delivery of effective new therapies to patients.’; and

(3) in subsection (c), by inserting `, biosamples relevant to environmental exposures,’ after `tissues’.

SEC. 4. CLARIFYING AMENDMENTS WITH RESPECT TO AUTISM INTERVENTION.

Section 399BB(f) of the Public Health Service Act (42 U.S.C. 280i-1(f)) is amended–

(a) by inserting `to research networks’ after `contracts’; and

(b) by striking `interventions for individuals’ and inserting `interventions to improve the physical and behavioral health and well-being of individuals’.

Here is bill H.R.2007, (House Resolution 2007), Autism Spectrum Disorders Services Act of 2011:

SEC. 2. INTERAGENCY AUTISM COORDINATING COMMITTEE.

Section 399CC of the Public Health Service Act (42 U.S.C. 280i-2) is amended–

(1) in subsection (a), by striking `within the Department of Health and Human Services’ and inserting `of Federal agencies’;

(2) in subsection (b)–

(A) in paragraph (1), by inserting `and the families of such individuals’ before the semicolon at the end;

(B) in paragraph (2)–

(i) by inserting `, evaluate, and assess’ after `monitor’; and

(ii) by inserting `and facilitate collaboration among Federal agencies regarding such activities’ before the semicolon at the end;

(C) in paragraph (3), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(D) in paragraph (4), by inserting `and other appropriate Federal Government department and agency heads’ after `Secretary’;

(E) in paragraph (5), by inserting `and services and supports for individuals with autism spectrum disorder and the families of such individuals’ after `research’; and

(F) in paragraph (6), by striking `submit to the Congress’ and inserting `submit to the President, who shall review and transmit to Congress,’;

(3) in subsection (c)–

(A) in paragraph (1) in subparagraph (D), by inserting `, the Department of Defense, the National Council on Disability, the Department of Housing and Urban Development, the Department of Justice, and the Department of Labor’ before the semicolon at the end;

(B) in paragraph (2)–

(i) in the matter preceding subparagraph (A), by striking `fewer than 6 members of the Committee, or 1/3 of the total membership of the Committee, whichever is greater,’ and inserting `less than 1/2 of the total membership of the Committee’;

(ii) in subparagraph (A), by striking `one such member shall be an individual’ and inserting `2 such members shall be individuals’;

(iii) in subparagraph (B)–

(I) by striking `one such member shall be a parent or legal guardian’ and inserting `2 such members shall be a parent or a legal guardian’; and

(II) by striking `and’ at the end;

(iv) in subparagraph (C)–

(I) by striking `one such member shall be a representative’ and inserting `2 such members shall be representatives’; and

(II) by striking the period at the end and inserting `; and’; and

(v) by adding at the end the following:

`(D) at least 2 such members shall be clinicians who treat individuals with autism spectrum disorder.’;

(4) in subsection (d) in paragraph (2), by inserting `, except that the term of any member appointed under subsection (c)(2)(C) shall expire if such member no longer represents the organization described in such subsection’ after `additional 4 year term’;

(5) in subsection (e), by striking the first sentence and inserting `In carrying out its functions, the Committee may convene workshop and conferences. The Committee shall establish a subcommittee on research on autism spectrum disorders, a subcommittee on services and supports for individuals with autism spectrum disorders and the families of such individuals, and such other subcommittees as the Committee determines appropriate. Such subcommittees shall vote separately on matters within their respective jurisdictions.’; and

(6) by adding at the end the following:

`(f) Report- Not later than 1 year after the date of enactment of the Autism Spectrum Disorders Services Act of 2011 and annually thereafter, the Comptroller General of the United States shall submit a report to Congress concerning the progress of the Federal Government in implementing the strategic plan for autism spectrum disorder research and services and supports for individuals with autism spectrum disorder and the families of such individuals.’.

SEC. 3. SERVICES FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

Part R of title III of the Public Health Service Act (42 U.S.C. 280i et seq.) is amended–

(1) by redesignating section 399EE (relating to authorization of appropriaations) as section 399FF; and

(2) by inserting after section 399DD the following:

`SEC. 399EE. PLANNING AND DEMONSTRATION GRANT FOR SERVICES FOR CHILDREN, TRANSITIONING YOUTH, AND ADULTS.

`(a) In General- To assist selected eligible entities in providing appropriate services to children, youth with autism spectrum disorders who are transitioning from secondary education to careers or postsecondary education (referred to in this section as `transitioning youth’), adults with autism spectrum disorders, and individuals of any age with autism spectrum disorders who may be at risk due to behavioral and preventable environmental factors, such as wandering (referred to in this section as `individuals at risk’), the Secretary shall establish–

`(1) a one-time, single-year planning grant program for eligible entities; and

`(2) a multiyear service provision demonstration grant program for selected eligible entities.

`(b) Purpose of Grants- Grants shall be awarded to eligible entities to provide all or part of the funding needed to carry out programs that focus critical aspects of life for children, transitioning youth, and adults with autism spectrum disorders (including adults not eligible for developmental disability services provided by a State), such as–

`(1) postsecondary education, peer support, vocational training, self-advocacy skills, and employment;

`(2) community-based behavioral supports and interventions;

`(3) residential services, housing, and transportation;

`(4) nutrition, health and wellness, and recreational and social activities; and

`(5) personal safety for individuals at risk and the needs of individuals with autism spectrum disorders who become involved with the criminal justice system.

`(c) Eligible Entity- An eligible entity desiring to receive a grant under this section shall be a State or other public or private nonprofit organization, including a State Council on Developmental Disabilities, as defined in section 102 of the Developmental Disabilities Assistance and Bill of Rights Act of 2000.

`(d) Planning Grants-

`(1) IN GENERAL- The Secretary shall award one-time grants to eligible entities to support the planning and development of initiatives that will expand and enhance service delivery systems for children, individuals at risk, transitioning youth, and adults with autism spectrum disorders.

`(2) APPLICATION- In order to receive such a grant, an eligible entity shall–

`(A) submit an application at such time and containing such information as the Secretary may require; and

`(B) demonstrate the ability to carry out such planning grant in coordination with the applicable State Council on Developmental Disabilities and organizations representing or serving individuals with autism spectrum disorders and the families of such individuals.

`(e) Implementation Grants-

`(1) IN GENERAL- The Secretary shall award grants to eligible entities that have received a planning grant under subsection (d) to enable such entities to provide appropriate services to children, individuals at risk, transitioning youth, and adults with autism spectrum disorders.

`(2) APPLICATION- In order to receive a grant under paragraph (1), the eligible entity shall submit an application at such time and containing such information as the Secretary may require, including–

`(A) the services that the eligible entity proposes to provide and the expected outcomes for the individuals who receive such services;

`(B) the number of individuals who will be served by such grant, including an estimate of the individuals in underserved areas who will be served by such grant;

`(C) the ways in which services will be coordinated among both public and nonprofit providers of services for children, transitioning youth, and adults with disabilities, including community-based services;

`(D) where applicable, the process through which the eligible entity will distribute funds to a range of community-based or nonprofit providers of services, including local governments, and the capacity of such entity to provide such services;

`(E) the process through which the eligible entity will monitor and evaluate the outcome of activities funded through the grant, including the effect of the activities upon individuals who receive such services;

`(F) where applicable, the plans of the eligible entity to coordinate and streamline transitions from youth to adult services;

`(G) the process by which the eligible entity will ensure compliance with the integration requirement under section 302 of the Americans With Disabilities Act of 1990; and

`(H) a description of how such services may be sustained following the grant period.

`(f) Evaluation- The Secretary shall contract with a third-party organization with expertise in evaluation to evaluate such demonstration grant program and, not later than 180 days after the conclusion of the grant program under subsection (e), submit a report to the Secretary. The evaluation and report may include an analysis of whether and to what extent the services provided through the grant program described in this section resulted in improved safety, health, education, employment, and community integration outcomes or other measures, as the Secretary determines appropriate.

`(g) Administrative Expenses- Of the amounts appropriated to carry out this section, the Secretary shall set aside not more than 7 percent for administrative expenses, including the expenses related to carrying out the evaluation described in subsection (f).

`(h) Supplement, Not Supplant- Demonstration grant funds provided under this section shall supplement, not supplant, existing treatments, interventions, and services for individuals with autism spectrum disorders.

`SEC. 399EE-1. NATIONAL TECHNICAL ASSISTANCE CENTER FOR AUTISM TREATMENTS, INTERVENTIONS, AND SERVICES.

`(a) Establishment of National Technical Assistance Center for Autism Treatments, Interventions, and Services- The Secretary shall award a grant to a national nonprofit organization for the establishment and maintenance of a national technical assistance center.

`(b) Eligibility- An organization shall be eligible to receive a grant under subsection (a) if the organization–

`(1) has demonstrated knowledge and expertise in serving children with autism and adults with autism and the families of such individuals;

`(2) has demonstrated knowledge of how to translate research to practice, and present information in a way that is easily accessible and understandable to the family members of individuals with autism ;

`(3) has demonstrated capacity of training educators, health care providers, family members, and others to support the needs of individuals with autism ;

`(4) has demonstrated capacity of disseminating information throughout the United States; and

`(5) has demonstrated capacity to establish and maintain a Web site through which to disseminate information in an easily accessible manner.

`(c) Use of Funds- The national technical assistance center established under this section shall–

`(1) gather and disseminate information on evidence-based treatments, interventions, and services for children with autism and adults with autism , including best practices in delivering such treatments, interventions, and services, and make this information available to State agencies with responsibilities under section 399BB(c)(2), local communities, and individuals;

`(2) gather and disseminate information on activities of the Interagency Autism Coordinating Committee established under section 399CC;

`(3) provide analysis of activities funded under the Autism Spectrum Disorders Services Act of 2011, including–

`(A) the effectiveness of State and community-based models for delivering comprehensive services to individuals with autism ;

`(B) identification and dissemination of best practices emerging from States, community-based organizations, nonprofit providers, and local governments receiving demonstration grants under this subpart;

`(C) the State-by-State availability of, and gaps in, services for individuals with autism spectrum disorders, including information on services or service gaps in rural areas; and

`(D) levels of funding and funding sources of services for individuals with autism spectrum disorders in States;

`(4) provide technical assistance to States and organizations funded under this part;

`(5) gather and disseminate information about autism spectrum disorders;

`(6) establish and maintain a Web site through which to disseminate the information gathered under this section in an easily accessible manner;

`(7) establish partnerships with advocacy organizations to disseminate accurate information on education, service-provision, and support options and provide assistance in navigating service-provision systems; and

`(8) gather and disseminate other information as determined appropriate by the Secretary.’.

SEC. 4. AUTHORIZATION OF APPROPRIATIONS.

Section 399FF of the Public Health Service Act (42 U.S.C. 240i-4), as redesignated by section 3(1), is amended by adding at the end the following:

`(d) Planning and Demonstration Grant for Services for Children, Transitioning Youth, and Adults- To carry out section 399EE, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $80,000,000.

`(2) For fiscal year 2013, $90,000.000.

`(3) For fiscal year 2014, $100,000,000.

`(4) For fiscal year 2015, $110,000,000.

`(5) For fiscal year 2016, $120,000,000.

`(e) National Technical Assistance Center for Autism Treatments, Interventions, and Services- To carry out section 399EE-1, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $2,000,000.

`(2) For fiscal year 2013, $2,100,000.

`(3) For fiscal year 2014, $2,200,000.

`(4) For fiscal year 2015, $2,300,000.

`(5) For fiscal year 2016, $2,400,000.’.

SEC. 5. GAO STUDY ON SERVICE PROVISION AND FINANCING.

Not later than 1 year after the date of enactment of this Act, the Comptroller General of the United States shall release a report that examines the following issues:

(1) The ways in which autism services and treatments are currently financed in the United States.

(2) Current policies for public and private health insurance coverage of autism treatments, interventions, and services.

(3) Geographic and regional disparities in provision of services across the lifespan of individuals with autism , levels of community-based versus institutional services, and coverage for such services.

(4) Ways in which to improve financing of autism treatments, interventions, and services, so as to ensure a minimum level of coverage across the United States.

(5) Gaps in financing and availability of services for adults on the autism spectrum, focusing particularly on the needs of adults not eligible for developmental disability services provided by the State.

(6) Areas of need to improve the quality of services available to individuals on the autism spectrum in cross-disability contexts, such as vocational rehabilitation and centers for independent living.

(7) Findings from replicable studies that indicate an increased risk of mortality for individuals with autism due to preventable circumstances such as wandering, exposure, drowning, and untreated seizure disorders.

SEC. 6. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM FOR INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

(a) Initiatives on Autism Spectrum Disorders- Title I of the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.) is amended by adding at the end the following:

`Subpart F–Initiatives on Autism Spectrum Disorders

`SEC. 171. EMERGING NEEDS PROTECTION AND ADVOCACY PROGRAM.

`(a) In General- The Secretary shall make grants to protection and advocacy systems for the purpose of enabling such systems to address the needs of individuals with autism spectrum disorders.

`(b) Services Provided- Services provided under this section may include the provision of–

`(1) information, referrals, and advice;

`(2) individual and family advocacy;

`(3) legal representation;

`(4) specific assistance in self-advocacy and assistance in capacity building for organizations that advocate on behalf of individuals with autism spectrum disorder; or

`(5) training to individuals with autism spectrum disorders, the families of such individuals, or advocates for individuals with autism spectrum disorders.

`(c) Eligibility- To be eligible to receive a grant under this section, a protection and advocacy system shall–

`(1) have the right and authority to investigate incidents of abuse and neglect of youth and adults with autism spectrum disorders if the incidents are reported to the protection and advocacy system or if there is probable cause to believe that the incidents occurred;

`(2) have the right and authority to pursue administrative, legal, and other appropriate remedies and approaches to ensure the protection of youth and adults with autism spectrum disorders; and

`(3) have the rights and authorities, including access authority, described in section 143 of this Act and section 105 of the Protection and Advocacy for Individuals with Mental Illness Act.

`(d) Grant Amounts- The Secretary shall make grants under this section during each fiscal year beginning on October 1 to protection and advocacy systems as follows:

`(1) APPROPRIATIONS LESS THAN $6,700,000- With respect to any fiscal year for which the amount appropriated under subsection (i) is less than $6,700,000, the Secretary shall make grants from such amount to protection and advocacy systems that apply for a grant under this section in the amounts described in paragraph (3).

`(2) APPROPRIATIONS OF $6,700,000 OR MORE-

`(A) IN GENERAL- With respect to any fiscal year for which the amount appropriated under subsection (i) is $6,700,000 or more, the Secretary shall make grants from such amount to protection and advocacy systems under this section in accordance with subparagraph (B).

`(B) AMOUNT OF GRANT- Subject to paragraph (3), the amount of a grant to a protection and advocacy system under subparagraph (A) shall be equal to an amount bearing the same ratio to the total amount appropriated for the fiscal year involved as the population of the State, Territory, or Consortium in which the grantee is located bears to the cumulative population of all States, Territories, and the Consortium that receive such grants.

`(3) MINIMUM AMOUNTS-

`(A) IN GENERAL- The amount of a grant under this section shall not be less than–

`(i) in the case of a protection and advocacy system located in a State, $120,000; and

`(ii) in the case of a protection and advocacy system located in a Territory or Consortium, $60,000.

`(B) ADJUSTMENTS TO MINIMUM AMOUNTS-

`(i) IN GENERAL- In the case of a fiscal year (referred to in this subparagraph as the `current fiscal year’) in which the total amount appropriated under subsection (i) is $10,000,000 or more, and such amount appropriated exceeds the total amount appropriated under such subsection for the preceding fiscal year, the Secretary shall increase the minimum grant amounts under subparagraph (A) by a percentage equal to the percentage by which the total amount appropriated for the current fiscal year exceeds the amount appropriated for the previous fiscal year.

`(ii) EXCEPTION- Clause (i) shall not apply in the case that the total amount appropriated for the current fiscal year is less than the amount appropriated for any fiscal year in the period between the date of enactment of the Combating Autism Reauthorization Act of 2011 and such current fiscal year.

`(C) APPLICABILITY OF ADJUSTMENTS- An increase in the minimum grant amounts under subparagraph (B) shall be effective for each subsequent fiscal year.

`(4) LOWER APPROPRIATION YEARS- In the case of a fiscal year for which the amount appropriated under subsection (i) is insufficient to satisfy the requirements of paragraph (3) for each protection and advocacy system that applies for a grant under this section, the Secretary shall award grants in the amounts described in paragraph (3) to as many protection and advocacy systems as the amount appropriated allows.

`(5) DEFINITIONS- For purposes of this subsection and subsection (e):

`(A) CONSORTIUM- The term `Consortium’ means an American Indian Consortium, as defined in section 102(1).

`(B) STATE- The term `State’ means each of the 50 States of the United States, the District of Columbia, and the Commonwealth of Puerto Rico.

`(C) TERRITORY- The term `Territory’ means American Samoa, the Commonwealth of the Northern Mariana Islands, Guam, and the United States Virgin Islands.

`(e) Carryover- Any amount paid to a protection and advocacy system that serves a Consortium, State, or Territory for a fiscal year under this section that remains unobligated at the end of such fiscal year shall remain available to such system for obligation during the next fiscal year for the purposes for which such amount was originally provided.

`(f) Direct Payment- Notwithstanding any other provision of law, the Secretary shall pay directly to any protection and advocacy system that complies with the provisions of this section, the total amount of the grant for such system, unless the system provides otherwise for such payment.

`(g) Administrative, Reporting, and Oversight Requirements- To the extent practicable, reporting, monitoring, program financing, and other administrative and oversight requirements established by the Secretary under this section shall be consistent with the other administrative, reporting, and oversight requirements for a protection and advocacy system.

`(h) Annual Report- Each protection and advocacy system that receives a payment under this section shall submit an annual report to the Secretary concerning the services provided to individuals with autism spectrum disorders by such system.

`(i) Authorization of Appropriations- To carry out this section, there are authorized to be appropriated the following:

`(1) For fiscal year 2012, $8,000,000.

`(2) For fiscal year 2013, $9,000,000.

`(3) For fiscal year 2014, $10,000,000.

`(4) For fiscal year 2015, $11,000,000.

`(5) For fiscal year 2016, $12,000,000.

`(j) Definition- In this section, the term `protection and advocacy system’ means a protection and advocacy system established under section 143.

`(k) Technical Assistance-

`(1) APPROPRIATIONS OF LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is less than $6,750,000, the Secretary shall set aside the greater of–

`(A) 1 percent of the funds appropriated; or

`(B) $25,000, to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

`(2) APPROPRIATIONS OF NOT LESS THAN $6,750,000- For a fiscal year for which the amount appropriated to carry out this section is not less than $6,750,000, the Secretary shall set aside 2 percent of the funds appropriated to make a grant to a national organization with experience in providing training and technical assistance to protection and advocacy systems to provide such training and technical assistance.

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