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

8 Jun

A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population is the latest in a long series of studies purporting to show a link between vaccines and the rise in autism prevalence. Like many of these studies, this one has major flaws. There was a time when I would take the effort to go through such studies in detail. There is enough bad in this one to take so long that I just can’t see taking the effort.

They claim that for every 1% increase in vaccination (defined in a very strange way, as you will see) their study shows that the autism rate (defined in an even stranger way) rises 1.7%.

Look at the title again: A Positive Association found between Autism Prevalence and Childhood Vaccination uptake across the U.S. Population

But, strangely enough, the author doesn’t study autism prevalence. Seriously. The author studies “To determine autism prevalence by U.S. state, the number of 8-year old students classified with either (1) autism or (2) speech or language impairments (speech disorders) was divided by the total number of 8-year-olds in the state.”. Yep, the author lumps autism with SLI. Consider, say, California in 2002 (one of the study years). There were 1,664 8-year-old students receiving services under the disability category “autism”. On the other hand, there were 22,702 8-year-old students in the SLI category. The autism data are basically swamped by the SLI data. Begs the question: what did the analysis show for autism alone? Could it have shown a protective effect of vaccination. Don’t get me wrong, the study isn’t strong enough to show a real association one way or another, but you really got to ask yourself why the author chose to bury autism this way.

In case you are wondering, the autism+SLI “prevalence” for California was about 5% for 8 year olds/3rd graders in 2001 (using 488.633 3rd graders)

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.

Here are a few more important points from the paper:

1) They use the “prevalence” of autism or SLI from special education numbers. These data are just not reliable for this sort of work. This has been gone over and over. The best discussion of this is from Jim Laidler in 2005. US Department of Education Data on “Autism” Are Not Reliable for Tracking Autism Prevalence

2) Note that they use cohorts from the mid 1990’s, soon after autism was first added as a special education category. They are pretty much guaranteed that the “prevalence” they calculate will go up.

All they need is to link this to changes in the vaccine uptake. Easily done. The vaccine uptake rate is changing dramatically during the first couple years of the study. For example, Alabama goes from 46 to 76% in two years. Why is that? That brings us to point (3):

3) Here’s a trick bit: the author uses the vaccine schedule from 1995. A brand new vaccine schedule was rolled out and states and pediatricians picked it up over the next couple of years. Of course the vaccine uptake, by this measure, was low at the start.

Yes, they chose a very artificial measure of “vaccine rate” to insure that they had big changes in the “rate” during the study period.

How often do we hear SafeMinds (the author is a member by the way) ask “where’s the study of the vaccinated vs. unvaccinated?” Even when they have the data, they don’t do the comparison. They compare children who got the full 1995 schedule of vaccines vs. children who didn’t (missing one or more vaccines). My guess is there isn’t enough non-vaccinated data to make the study. But, that doesn’t explain why they went ahead with this really bad study.

How about a “too many too soon” study, comparing the total number of vaccines vs. autism rate? Again, not done in this study.

Of course the author is aware of the vaccinated/unvaccinated question. A few quotes from the paper:

A child who missed only one shot was different from a child who was completely unvaccinated, yet in this study both children were classified as not fully vaccinated.

and

A child who received all but 1 vaccination on time might be different from a child who received no vaccinations, yet both were in the group of children who did not receive timely vaccinations. Had the researchers examined fully vaccinated versus completely unvaccinated children, the results might have been different.

and

A follow-up study could investigate the prevalence of autism among unvaccinated children. Other children who typically are not vaccinated could be surveyed. These groups include the Amish and children served by Homefirst, a health clinic near Chicago (Eisenstein, 2009), as well as some homeschooled children or younger siblings of children with autism whose parents decided not to vaccinate.

“Eisenstien, 2009” is a link to the HomeFirst website, which includes unsupported claims. What is the point of a citation to an unsupported claim? For example, in the cited link, Dr. Eisenstein makes the unsupported claim:

“Since 1973, The Homefirst physicians have been offering vaccine choice and awareness Unlike most doctors, the Physicians of Homefirst are honored to serve your family if you give all some or none of the vaccines.

They have virtually no asthma, allergies, ADHD, ADD or Autism in their more then 35,000 un-vaccinated children. “

Where’s the data on how many of their patients have ADD, autism, or the other conditions? Also, I’ve seen the quoted number of “unvaccinated” at Homefirst vary through a very large range.

But back to the actual paper. What does the study claim as a result?

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 disorders.

Remember, this is using the strange definition of “vaccination rate” is how many children got the full series vs. how many missed any one or more vaccines.

Here you can see their data. Yes, “vaccination rates” and “autism or SLI rates” both go up with time. But it is how they go up that show us how bad this study is:

Take a close look at the vaccination rates for the first two years. That’s when there are the big increases. This is expected because, again, they measuring vaccination rates as the percentage of kids who got the full 1995 schedule, and they start in 1995 when the schedule was just introduced.

The autism/SLI rate, on the other hand, shows a slower, more steady increase (ignoring the noise).

Take a look at table 1. again. Take a look at the first couple of years in, for example, Alabama. The vaccination rate they quote increased from 46% (1995) to 65% (1996), rising again the next year to 76.5% (1997). What did the autism+SLI rate do? It went down.

Recall the result:

Further, if a given U.S. state decreases its vaccination coverage by 1% from one year to the next, prevalence of autism or speech disorders may, on average, fall by 1.7%. If 100% children received this series of vaccinations, the prevalence of autism or speech disorders would be 1.7%

Since the “vaccination rate” went up 20 points (from 46% to 65%), we would expect autism/SLI to go up a lot too: 0.34%, from 4.6% to 4.92%. You can see the same sort of trends in the first two years state by state–big increases in the vaccination rates, small or negative changes in the autism/SLI rates.

It’s only after many years go by that there are notable changes in the autism/SLI rates. Even then it isn’t consistent. Again, look at Alabama. Over the entire study period, the autism/SLI rate went down. Same for the next state on the list, Alaska.

The next state on the list (yes, it’s alphabetical) is one of the “winners” in the study. Autism/SLI rates went up notably over the study period, from 3.8 to 6.2%. But, strangely enough (if you believe the author that is) this didn’t happen for the cohorts which saw the big increases in vaccine rates. A big jump in autism/SLI rate is seen for the last year (a 0.8% jump), but this is for years when the change in vaccination rates was relatively modest.

To put it simply, the result of the study just doesn’t make sense given the data that we (and the referees who cleared this paper) can plainly see. This is a prime example of exactly the sort of paper that really has shown over the years the sort of intellectual dishonesty which has promoted the vaccine-epidemic notion.

Combating Autism Reauthorization Act

3 Jun

House bill 2005 is now online. As you will see, it is a very brief bill, making modifications to the original Combating Autism Act.

A BILL

To reauthorize the Combating Autism Act of 2006.

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 `Combating Autism Reauthorization Act of 2011′.

SEC. 2. DEVELOPMENTAL DISABILITIES SURVEILLANCE AND RESEARCH PROGRAM.

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

(1) in section 399AA(e), by striking `2011′ and inserting `2014′;

(2) in section 399BB(g), by striking `2011′ and inserting `2014′;

(3) in section 399CC(f), by striking `2011′ and inserting `2014′; and

(4) in section 399DD–

(A) in subsection (a), by striking `Not later than 4 years after the date of enactment of the Combating Autism Act of 2006′ and inserting `Not later than 2 years after the date of enactment of the Combating Autism Reauthorization Act of 2011′; and

(B) in subsection (b), in paragraphs (4) and (5), by striking `the 4-year period beginning on the date of enactment of this Act’ and inserting `the 6-year period beginning on the date of enactment of the Combating Autism Act of 2006′.

SEC. 3. AUTHORIZATION OF APPROPRIATIONS.

Section 399EE of the Public Health Service Act (42 U.S.C. 280i-4) is amended to read as follows:

`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.

`(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there is authorized to be appropriated $22,000,000 for each of fiscal years 2012 through 2014.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there is authorized to be appropriated $48,000,000 for each of fiscal years 2011 through 2014.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out sections 399CC, 404H, and 409C, there is authorized to be appropriated $161,000,000 for each of fiscal years 2011 through 2014.’.

END

Panorama captures torture and abuse in UK care homes

1 Jun

I try and watch programmes about special needs issues if I can. It helps to stay abreast of the latest issues in the wider special needs community.

However, last nights Panorma I had already decided I simply couldn’t watch.

In one scene in the programme, a male support worker seems to goad a female patient to throw herself out of a second-floor window. He says: “Go on, do it now I’m here. I’d love to see you try it: you will go flying. … When you hit the floor, do you reckon you will make a thud or a splat?”

In another scene, a second male support worker is seen to act as a Nazi camp commandant, repeatedly slapping a patient across the face with a pair of leather gloves and saying: “Nein, nein, nein!”

Staff, sometimes with qualified nurses watching, used forms of restraint that an expert described as closer to martial arts rather than any approved technique. A female patient is seen pinned beneath a chair for more than 30 minutes with one support worker sitting in the chair and keeping his foot on her wrist, while a second worker kneels on her legs.

Source.

The patients in this case are mentally ill people, people with learning difficulties and people with autism.

What I did watch – for awhile – was the Twitter stream of people reacting to the programme but when it became clear that the programme was just as awful as I thought it might be I simply had to turn that off too.

Maybe you’re stronger than me. If so, theres an example of the sort of thing Panorama captured here.

Whether you watch it or don’t, pass it on to others to watch. Maybe those who aren’t aware will realise that for those of us with friends and relatives with special needs, this issue is of paramount importance.

My IMFAR poster

1 Jun

I was fortunate enough to attend IMFAR this year on an Autism Science Foundation stakeholder travel grant. This is the second year of the program, and I hope that they continue it. Given that, I thought it would be valuable to write about my day-to-day experiences: Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

I have to admit, my experiences were probably out of the ordinary for a stakeholder travel grantee. I hope that many or even most will be people who are not familiar with scientific conferences (I have attended several over the past 20 years). I do hope that more bloggers attend and report back, though, so experiences with the press conference could be of value.

One aspect of my IMFAR visit that I didn’t discuss in detail on the ASF blog was that of presenting a poster. My topic was:

Parent Reported Status and Expectations for Their Autistic Student Children:
An Analysis of the 2007 National Household Education Survey

Here’s the abstract:

Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.
Objectives:

1. Compare educational placements and percieved educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.

2. Explore parent expectations for the future of their ASD student.

Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder.

Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.

Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.

Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.

Here’s the actual poster:

Imfar poster 2

If you are unfamiliar with a poster presentation, here’s the short version: You take your study and write it up on a 3′ x 4′ piece of paper. You stand in front of the poster and discuss it with the people who are interested.

I was very lucky in that I was right by one of the doors, so a lot of traffic came my way. That traffic included a few people who knew me from my blogging here. One reader came up and said “Hi Sullivan!”. A group from Kennedy Krieger stopped by and told me they wanted to take a picture of the poster to show their colleague–who I was citing in my work. I don’t think they are used to people saying, “You guys from Kennedy Kreiger rock!”, but they got it from me. I spoke with a researcher I know who worked under Ami Klin (formerly of Yale, now at Emery), whom I got to meet there too.

I was scheduled for the 10am time slot on Friday. This means I had to duck out early from Eric Courchesne’s keynote talk. I spoke with him later and he asked me about his talk. I told him it was very good and he responded with the killer question: what did I think of the last 15 minutes? I had to admit that I was standing in front of my poster then and missed his conclusion. To which he responded (with a bit of a mischievous grin, if I may say): you missed the best part! as he disappeared through a door.

I was scheduled for 1 hour. Posters can be a bit tedious when you stand there waiting for someone to talk with. I was lucky in that I went pretty solid for 2 hours.

A poster presenter needs to have the 1 minute “walk through” of the study. Mine was basically this: A lot of work has been focused on the National Survey of Children’s Health (NSCH). This is the study which formed the basis of one of the “autism prevalence is 1%” last year. There didn’t seem to be much focus on the educational survey which I presented, and I was there to make it known that there was this other data source. I didn’t dwell too much on the prevalence (1 in 65) or the fact that the prevalence was basically flat with age (Figure 1). What I found interesting was the fact that there is a very wide range of parental reports of abilities, difficulties and expectations for their kids. Yes, by every measure shown, autistic students are more likely to be in ungraded classrooms, get lower grades, have reports of behavior problems and the like. But a notable fraction are being parent-reported as getting “A’s”. Most parents expect their children to graduate high school (over 90%) and many parents expect some college or even graduate school. Those last questions were only asked of parents of children in middle school and above, so they had some basis to make the predictions.

I pointed out that there is no way to see how realistic the parent’s expectations were (and that there was a far more rigorous study being presented at IMFAR on the transition out of school for autistic students–that of Paul Shattuck’s group in St. Louis–and that expectations exceed reality). The first person to look at my poster noted that 30% of parents of children overall (the general population) were expecting their kids to go to graduate school, which shows that all parents are proud of and optimistic about their children.

There was a wonderful presentation on the poster next to mine by a team from Georgia Tech. I hope to include that team’s work in a later post.

I am very grateful that IMFAR accepted my abstract. I went in with the idea that my poster might be the least interesting study presented. In the end, if I do say so myself, I held my own. Sure, it’s not earth shattering research. But there were interesting points. For me it was a great experience, even if it meant a flashback to my grad school days of standing in front of a poster.

Science asks XMRV authors to retract paper

1 Jun

XMRV (Xenotropic murine leukemia virus-related virus) has been “linked” to a number of conditions, from prostate cancer to autism. One of the most publicized is the purported link between XMRV and chronic fatigue syndrome (CFS). One of the major papers in this “link” was published in the journal Science. Well, Science has asked the authors to retract the paper.

Prometheus over at A Photon in the Darkness discusses this in detail in Science asks XMRV authors to retract paper. Of particular interest are the studies showing how XMRV can be falsely detected if there is contamination. Rather reminiscent of work on measles virus and autism of years gone past.

Autism and autism – two shades of the same thing

30 May

I’m quite lucky really. Once my ex and I separated I started seeing someone else. This other person also has a child with autism. Now that we live together I have experience of two shades of autism.

My own child has profound learning difficulties as well as autism. My step child’s issues are more to do with sociability and her environment. My own child attends what is known in the UK as a Special School. My step child is in a mainstream setting. It is felt by all sets of parents that both children are very much in the right environment.

As a result of this exposure to two shades of autism, my own views of what autism is have altered a little in some ways and in others, become more firmly held. The way they have altered is that I am now, as noted by some, more amenable to seeing autism as one more thing than a difference and a disability – it _is_ also a medical issue. What do I mean by that? Well, for example, my step child has a different set of issues under the terms of the DSM IV (and the DSM V) as my own child. However they are both still fully and diagnostically autistic. Before, I would’ve simply accepted this as ONLY a different shade of the same thing. Now, I see it as a difference which is medically diagnosable and also disabling in some ways and very enabling in others (my step child is a maths whiz, far far ahead of her NT peers).

In what ways have my views on autism become more entrenched? Well, being responsible for two children on the spectrum who are markedly different from each other in diagnostic issues might have led me to doubt autism as a valid diagnosis at all but it is the similarities they both have with each other that leads me to believe that I am right to consider autism as something more than _just_ a disability. Is it a disability at all? Yes. Autism has disabled both my child and step-child. Is it a difference? Yes it is. These two kids are different in positive ways.

There are people who take me to task for suggesting that I don’t believe autism _must_ be cured. Thats fine, they’re entitled to their opinions. I would suggest however that they haven’t considered the shades of grey that exist between two people with autism, let alone the whole huge spectrum of differences that must exist.

They also take me to task saying that, if a cure ever existed I wouldn’t cure my child unless she asked me too. They take the literal view that because my child is non-verbal she can’t ask, therefore I am denying that cure. There are of course a multitude of issues with that stance. First is the face that kids – even (shock) autistic kids – develop over time. Just because my child is non-verbal _now_ doesn’t mean that my child will _always_ be non-verbal. Second is that fact that non-verbal doesn’t mean non-communicative (See Carly’s Voice for a prime example). Third is the face that my child’s autism is not the greatest challenge xe faces. That challenge is her learning difficulty (intellectual disability in North America). I could remove autism tomorrow and still my child would be profoundly affected by a disability.

Things are never cut and dried. Black and white. The answers to a lot of issues (not all) lies somewhere in the middle. For those who immaturely expect their to be AN answer, good luck to you. I hope you find your answer. Don’t however, think that your answer is THE answer. I have no idea who said the following but I think its spot on: “follow the man who seeks answers, flee from the man who has found them.”

College students on the autism spectrum: Prevalence and associated problems

29 May

A recent study by a team at Virginia Polytechnic Institute and State University has investigated the prevalence of autism within a university population. The paper, College students on the autism spectrum: Prevalence and associated problems, found a groups of students who met the diagnositic criteria for autism but were previously undiagnosed.

Here is the abstract:

As more young people are identified with autism spectrum diagnoses without co-occurring intellectual disability (i.e. high-functioning autism spectrum disorder; HFASD), it is imperative that we begin to study the needs of this population. We sought to gain a preliminary estimate of the scope of the problem and to examine psychiatric risks associated HFASD symptoms in university students. In a large sample (n = 667), we examined prevalence of ASD in students at a single university both diagnostically and dimensionally, and surveyed students on other behavioral and psychiatric problems. Dependent upon the ascertainment method, between .7 per cent and 1.9 per cent of college students could meet criteria for HFASD. Of special interest, none of the students who were found to meet diagnostic criteria (n = 5) formally for HFASD in this study had been previously diagnosed. From a dimensional perspective, those students scoring above the clinical threshold for symptoms of autism (n = 13) self-reported more problems with social anxiety than a matched comparison group of students with lower autism severity scores. In addition, symptoms of HFASD were significantly correlated with symptoms of social anxiety, as well as depression and aggression. Findings demonstrate the importance of screening for autism-related impairment among university student

Repeated for emphasis: “Of special interest, none of the students who were found to meet diagnostic criteria (n = 5) formally for HFASD in this study had been previously diagnosed.”

We have had much discussion here lately as to whether “symptoms of autism” equate to autism. If this is the case, the prevalence of autism amongst college students is on the high side of the Virginia Tech team’s estimates.

“From a dimensional perspective, those students scoring above the clinical threshold for symptoms of autism (n = 13) self-reported more problems with social anxiety than a matched comparison group of students with lower autism severity scores.”

Why are some autism groups silent on the Combating Autism Reauthorization Act?

29 May

Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation, ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

ASAN: Tell Congress “No” to Three More Years of the Same On Autism Policy

29 May

The Combating Autism Re-authorization Act (CARA) has been started in the U.S. legislature. The Autistic Self-Advocacy Network (ASAN) has issued a position statement on the bill:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators’ good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We’re urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms. You can reach them through the Capital Switchboard at (202) 224-3121 by giving your state and asking to be put through to your Senator. Making the call and urging their opposition is important even if you don’t feel comfortable having a longer conversation, but if you want to provide additional reasons to oppose this extension we have provided several below:

A three year extension of the existing Combating Autism Act means a three year delay before Congress takes any meaningful action on services for Autistic people across the lifespan. It means three years before any new supports for adults on the autism spectrum are introduced and three years before any of the problems with the status quo are fixed. We can’t afford to wait that long.

CAA’s existing programs enable a severe bias in the autism research agenda against services and adult issues. According to the recently released IACC Research Portfolio, less than one percent of autism research dollars spent in 2009 went to research relating to adults while only three percent went to research about improving services, supports and education! This inequity calls out for change.

CAA’s existing structure excludes the very people who should be at the center of the autism conversation: Autistic people ourselves. By locking in place for another three years a bill that was passed without the involvement of self-advocates, Congress would be sending a message that the needs and perspectives of Autistic adults don’t matter.

Any long term extension of CAA must involve additional investments in services, greater inclusion of self-advocates in every program and more respectful language shifting from “combating autism” to supporting Autistic people. Call Congress today at (202) 224-3121! Remember to call twice in order to reach both of your Senators. If for accessibility reasons, you need to e-mail your Senators instead you can find their e-mails on the Senate website at this link.

We need your help to remind Congress they can’t ignore the voices of the Autistic community. As always, Nothing About Us, Without Us!

Regards,

The Autistic Self Advocacy Network

PaulOffit.com, a tempest in a teapot

28 May

A month or so back, I stepped forward to state that I, Matt Carey, have been posting as Sullivan here on Left Brain/Right Brain. Mr. J.B. Handley of the Age of Autism blog and Generation Rescue had made a commitment to transfer the domain pauloffit.com and to stop commenting on Dr. Offit should it be demonstrated that Sullivan was not Bonnie Offit, wife of Paul Offit.

The domain was not transferred until yesterday. In the time that has transpired, tempers have raised. The last comment in the string below should be taken as a sign of the frustration level and not as an opening for critique, in my opinion. I considered leaving it out for that reason.

I generally do not like to post emails. However, as Mr. Handley has already posted some of these exchanges, I feel that it is appropriate to post the full exchange at this time. Here are the emails which I have found in my inbox. If any are missing, I feel sure that will be brought to my attention and I will add them. I do not have access to the emails or other communications between Mr. Handley or his agent and the domain registration company register.com. I can’t tell if the request to email Dr. Offit was made or not. I can’t tell if register.com bungled the communication. I just don’t have that data.

At one place on the web (at least) I commented that Mr. Handley emailed me first. That he did not do. He made the offer to complete the deal on his blog.

April 29:

Matt:I’ll take care of it early next week, thanks for the guidance.

On a separate note, I wanted to ask you to submit to an interview via email for publication at AoA. I will generate the questions, you answer them, and I publish them in totality without editorializing. The topics will exclusively cover the science of autism, known and unknown, and include prevalence, vaccines, and medical issues.

My reason for asking is that you are really the first well-educated parent (although Harvey Mudd is no Stanford 🙂 I have encountered on the other side of this topic who doesn’t seem to be a nut job (Kevin Leitch, Autism Diva, etc.).

I honestly do not understand how you have looked at the same published research I have looked at and concluded that vaccines have been exonerated from causing a majority of today’s autism. I really, truly do believe that the large-scale epidemiological studies that are constantly cited as “proof” are garbage, have yet to ask the right questions, and are typically managed to produce a previously determined outcome. I believe Allison ISnger and Paul Offit consistently and knowingly misrepresent what has been studied in public statements, and it really drives me nuts.

As a Ph.D. scientist, I think your answers will be thought-provoking. I’d like to ask you pointed questions and let you answer them. Your writing has shown me you aren’t a spin doctor and will answer things like a scientist, not a partisan. Despite my delight in provoking people I consider to be idiots (Orac), I actually do enjoy debating this issue, because my only genuine interest in all this is helping my son. If it really wasn’t the antibiotics and vaccines that got him, I’m wasting a hell of a lot of time and money treating the wrong things.

My request for the interview has nothing to do with Offit’s website, so no conditions here, I just hope you’ll consider the interview for its own sake. There are a lot of extremely smart parents on our side of the table, and I’d like to see the different reactions a thorough and measured interview with an “opposition figure” brings.

Ball is in your court,

JB Handley

On Apr 29, 2011, at 2:36 PM, Matt Carey wrote:Mr. Handley,

A few people have forwarded your piece to me today. I appreciate what you have said and I have offered a public apology on LeftBrainRightBrain for questioning your integrity in honoring your commitments.

As far as the domain pauloffit.com, you can transfer that directly to the Offits. I believe you have his contact information. If not, it can be found on his website: http://www.paul-offit.com/

Matt Carey

May 2nd:

Are you going to take 5 months to respond again?JB Handley

May 5th:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JBJB Handley

May 13th: I added this comment to the blog post:

He replied that he would “take care of it early next week”That was April 29th. He never contacted Dr. Offit, and the site has been merely redesigned.

The apology was premature.

May 13th:

Matt:The site was offered to Paul Offit. It was also unlocked. After 3 days, apparently no one had claimed it, at which point anyone could. I can’t make Offit take it, maybe he didn’t so you guys could say I re-traded. Whatever, I did my part. Offit could confirm he received an email offering it to him. Don’t bother writing back, I have conceded I was wrong, and honored my end of the deal, JB

My email to owner of domain:

On Mon, May 2, 2011 at 10:23 PM, JB Handley <[redacted]> wrote:

Hey

– Give the site back to Paul Offit, or at least give him the right to register the domain name. Can you do that?Please email the right to the domain to: offit@email.chop.edu

It’s a long story, but basically I lost a bet. JB

From: [redacted]
To: JB Handley <[redacted]>
Subject: Re: Do you have anytime in the next few days?
Date: May 3, 2011 9:32:08 AM PDT
Hi JB -Step 1 of 3 is done:

The http://www.pauloffit.com site has been updated.

The domain is unlocked and anyone can request a transfer. Once that request is submitted, you’ll get an email at “[redacted]” to confirm that transfer. Additionally, I used Register.com’s transfer process, using the “chop.edu” email address below that you gave me.

– [redacted]

JB Handley

May 14th (comment posted on a few blogs, including here)

Todd:Dr. Offit is lying, as usual. On may 3rd, Dr. Offit received an email from register.com offering the transfer of the site to him. After 72 hours, Dr. Offit had not claimed it and the site was available to anyone to register. The email where the register.com transfer was sent was provided to me by Matt Carey, who directed me here to find it:

I even sent Mr. Carey a note on May 6th advising him of that and offering to interview him for AoA, in the spirit of closing the gap between us, to which he has never responded, here’s the contents of that email:

Just an fyi that pauloffit.com was unlocked and an email sent to Dr. Offit making it available to him was sent Tuesday afternoon this week. Case closed. The offer stands for an interview to be posted at AoA, thanks, JB

Someone is lying to you, JB Handley

May 15th:

Matt:Below is completed transfer. I sent Offit first notice on May 3rd, 12 days ago – FUCK YOU for publicly saying I didn’t!!

“After Mr. Handley emailed me I replied that he could transfer the domain directly to the Offits. He never contacted them.”

When I say I am going to do something, I do it.

And, you don’t even have the courtesy to respond to my emails or interview request. Man up,

JB Handley

Begin forwarded message:From: “J.B. Handley” <[redacted]>
Date: May 15, 2011 6:02:29 PM PDT
To: “’[redacted]’” <[redacted]>
Subject: FW: Register.com – Transfer of Registrant is completed

J.B. Handley
——-Original Message——-
From: support@register.com [mailto:support@register.com]
Sent: Sunday, May 15, 2011 1:01 PM
To: J.B. Handley
Subject: Register.com – Transfer of Registrant is completed

Dear Valued Customer,

This email serves as a notification that the Transfer of Registrant for pauloffit.com from JB Handley to Paul Offit has been confirmed and processed successfully. Please note that the services associated with the domain are not transferable when a Transfer of Registrant takes place, any service previously in place for the domain must be repurchased if you wish for it to be reinstated.

If you have any further questions about this process and wish to consult with a Customer Service Representative you can contact us 24 hours a day, 7 days a week, by submitting a request online at http://help.register.com/cgi-bin/register_help.cfg/php/enduser/ask.php or by contacting one of the numbers below.

Thank you for choosing Register.com.

Note that this last email was sent just yesterday. The previous one was sent Friday. I was at IMFAR then, and have been either at the conference, traveling, or getting caught up at work since.

I can be pedantic and stand by my statement on May 13th: Did Mr. Handley contact Dr. Offit in early May? No. Are there other inconsistencies in the above set of exchanges? Yes. Is there value in stressing that point? No.

Mr. Handley chose a third person, who chose register.com to contact Dr. Offit. Is it possible that Mr. Handley and whoever was running pauloffit.com are not aware of that “unlocked” doesn’t have to mean “available for anyone to register”? There should be a key to effect the transfer. There’s a lot of chance there for the ball to be dropped. Neither Mr. Handley nor myself has access to Paul Offit’s email to confirm what did or did not get through. We can say that Dr. Offit has commented that he was not contacted. Given his interest in obtaining this domain, I don’t see the need to question that he would have acted on an email if it came.

I think many people, myself included, thought that a third person had grabbed the domain and that it was lost. At one point I did try to check on the registration status of the site, and I found that it was not available. If it did stay in Mr. Handley’s (or his agent’s) possession this whole time, it strikes me odd (to say the least) that the site was redesigned given the commitment that Mr. Handley made to stop commenting about Dr. Offit.

Earlier today I participated in a chat session with someone at register.com. I was still a bit confused about everything, so I would ask better questions if I had another opportunity. For one thing, I was under the impression that the site had been transferred to someone other than Mr. Handley (or his agent) and Dr. Offit. Here is that exchange:

Rob A.: Hi, my name is Rob A.. How may I help you?
Matt Carey: I’m looking for information about how register.com transfers domains
Matt Carey: I was involved in a recent transfer. The original owner of the domain set up the transfer by email with your team, who contacted the person to receive the domain. When no response was received by register, the domain was unlocked and someone else took the domain.
Matt Carey: Is this standard practice with Domain? It seems odd that the domain would be just unlocked
Rob A.: Could I get the dom,ain name in question pelase?
Matt Carey: Here is what I was told: the recipient “…received an email from register.com offering the transfer of the site to him. After 72 hours, [the recipient] had not claimed it and the site was available to anyone to register. ”
Matt Carey: pauloffit.com
Rob A.: Thank you
Matt Carey: The domain is now, finally, been transferred to the correct person. But originally, we were told that the domain had been unlocked and transferred to a third party.
Rob A.: I see that the transfer was successful from one account to the other
Rob A.: That may have been send in error as I do not see that in our system
Rob A.: Sorry
Matt Carey: Is it the policy of Register.com to simply unlock a domain after 72 hours?
Rob A.: no.
Matt Carey: Is it possible to tell me if a third party did posses the domain for a short period? Someone other than Mr. Handley (the original owner) and Dr. Offit, the current owner?
Rob A.: Not according to our system
Rob A.: It went from one account to the other
Matt Carey: Thank you very much for your time.
Rob A.: Thank you for visiting Register.com – Don’t just make a website – Make an Impact!
Rob A. has disconnected.

Are Mr. Handley’s statements accurate? No. For one thing, the site was not left open for anyone to register. Is that a lie? Not in my book. Let’s just say that Mr. Handley and his agent didn’t understand how domain registration transfers work. I certainly didn’t a few days ago.

Mr Handley stated on his blog: “I kept a screen shot of the confirmation of emails sent from register.com.” He has not shared those with me.

Mr. Handley is correct that I should have responded to his request for an interview. For that, I do apologize. I could brush it off as being due to Mr. Handley’s demeanor which, frankly, I do not care for. However, that would be blameshifting. Crafting a response was not straightforward as it may seem. I try to keep the exchanges respectful, if sometimes critical. Given that this is overdue, let me post my response here:

Mr. Handley,I appreciate your offer of an interview with your blog. I believe that in my many posts I have made my positions quite clear. It is very difficult to craft a response that would not come across as a slam. Suffice it to say, I would not willingly add my name to the Age of Autism blog. If at some point in the future, the focus of the Age of Autism were to shift to one which actually advances the needs of children like mine, and the adults whom I see as allies, I would be happy to consent to an interview. Until that time, I consider this matter closed.

Matt Carey

To respond to the obvious criticism: I have still not responded to Mr. Handley by email. I leave it up to you, the reader, to tell me if you would respond to the emails of the tone above. I feel quite comfortable with my decision.

This response by Mr. Handley puts a major damper on the optimism I felt coming from IMFAR. I spent a lot of time with people, a few of whom are on “the other side of the fence”. It was very refreshing to sit down with people, disagree and still feel kinship for those people. There was at least one person whom I wish I had approached and spoken to, if only to express the fact that I hold that person in high regard, even though we have disagreed. But, on the whole, I came away with something I didn’t expect: a sense of hope. It isn’t about people agreeing. It’s about people of differing opinions working as allies. It is also about accepting the science. Accepting the facts as they come in. It’s also about not causing harm to the autism communities and to public health.

Note: this article originally ran on May 17th. In our transition to a new hosting service, the post was lost. I’ve copied it over from the Google Cache version.

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