Archive by Author

ASAN: Lindt Chocolates and Autism Speaks

10 Mar

Below is a letter from ASAN’s Ari Ne’eman. Lindt Chocolates has a fundraising campaign to sponsor Autism Speaks and organization which has no autistics in prominent, decision-making positions.

Recently, Lindt Chocolates announced a fundraising campaign for Autism Speaks, an organization that excludes autistic people themselves from its decision-making, uses offensive and unethical advertising tactics based on fear and pity and raises funds for the eugenic elimination of the autism spectrum. Too often, money raised to improve our lives goes towards organizations that don’t speak for us and work against our interests. People with disabilities of all kinds have a right to be at the center of the decisions made about us, not standing at the sidelines. We’ve started an action alert to tell Lindt Chocolates that its money is better used elsewhere, with charities whose work will benefit the lives of autistic people rather than aim to eliminate us. Click here to go to our action alert or go to: http://www.change.org/autisticadvocacy/actions/view/tell_lindt_chocolates_that_autism_speaks_doesnt_speak_for_us

The action alert allows you to write your own e-mail or use a form letter already available, however, for those of you who want to write your own e-mail or can’t use the action alert for whatever reason, here are some talking points on why Autism Speaks is bad for the autism and autistic communities. Lindt Chocolate’s e-mail is here: lindt@qualitycustomercare.com

-Autism Speaks is an autism organization that claims to speak for autistic people, without a single autistic person on its board of directors or leadership. This is far out of line with the mainstream of the disability community, where individuals with disabilities work side by side with family members, professionals and others to achieve quality of life and equality of opportunity. Autism Speaks’ exclusionary policies are an embarrassment to itself and its funders.

-Autism Speaks advertising is highly offensive to autistic people and our families, with ads that compare a life on the autism spectrum to a car accident, being struck by lightning, a terminal illness and other fatal situations. Rather than work to decrease stigma and increase respect for autistic people, Autism Speaks’ advertising fosters pity, shame and fear, suggesting that our very lives are mistakes and burdens.

-Autism Speaks’ fundraising goes towards genetic research aimed at developing a prenatal test with potentially eugenic applications. Given the fact that 92% of fetuses that test positive for Down Syndrome are selectively aborted prior to birth, we are concerned by the prospect of a similar result in respect to the autism spectrum. This is an issue of discrimination, wholly separate from typical abortion politics. Money raised in the name of autistic people should go towards opportunities for quality of life, not towards our elimination. Autism Speaks research agenda is overwhelmingly focused on causation and prevention rather than research initiatives that might support quality of life for all autistic people. This drains support from initiatives that stand to improve the quality of life of autistic people, such as services, supports and education, which Autism Speaks supports in only a tiny fraction of its massive budget.

Thank you to those who alerted us of this situation and we urge your immediate support. Together, our voices cannot be ignored. Nothing About Us, Without Us!

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

The Lindt fundraiser has already been blogged by abfh. If you know of any others, let me know and I’ll link to them here.

For example.

Media dis&dat has ASAN protests Lindt Chocolates-Autism Speaks fundraising tactics.

Change.org included this in their Monday Autism News Potpourri.

Autism And Divorce

8 Mar

What is the divorce rate among autism families?

Let’s set aside the fact the this is a very poorly worded question, and let’s just go with the notion that is likely to be pondered by typical peeps on the street – what is the divorce rate among couples who have a child (or children) with some sort of autism spectrum ‘disorder’ diagnosis?

Many bloggers have apparently attempted to look somewhat earnestly at the question – and they often come up empty handed:

Lisa Jo Rudy
“But so far as I can tell, having researched the topic in all the usual places plus a few more (personal connections to reearchers in the autism community), there is no basis for these claims.”

Kristina Chew
“While I have often seen the figure of 80-85% referred to, I have not found a good source for this figure.”

Patricia Robinson
“I can’t find a study that shows that rate.”

But for everyone of those who don’t turn anything up, there appears to be a glut of what looks more and more like internet urban legend similar to the following:

On Oprah
“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation’s largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have news for Autism Speaks – 100% of all marriages end, eventually.

In all practicality, there are probably way too many internet discussion forum threads, blog articles, and statements from anti-autism advocacy organizations to really quantify, so I’m not even going to pretend to try. Heck, this is probably one reason this particular urban legend persists – the fallacious logic of appeal to popularity can be strong with the masses.

Let’s just round out that fallacious logic, of truth due to popularity, with a comment from botulinum toxin injection-loving Jenny McCarthy, which is really not much more than ascribing importance to her personal experience (appeal to anecdote).

Soon after Evan’s diagnosis, Jenny says the stress of raising a child with autism began to take a toll on her marriage. An autism advocacy organization reports that the divorce rate within the autism community is staggering. According to its research, 80 percent of all marriages end.

“I believe it, because I lived it,” she says. “I felt very alone in my marriage.”

Source

Well if Jenny believes it, it must be true (and especially so, since she apparently said this on the Oprah show).  😉

Okay, enough already. It’s clear that there is probably a lack of real quantifiable information “out there” about divorce among families with autistic children.

However, Easter Seals (in conjunction with the Austism Society of America) did look at the question (quite recently I might add: July, 2008 – Report Published in December, 2008) as part of a larger “Living With Autism” study. You can download the report (registration required) here.

Even autism super sleuth, Kim Stagliano, over at AoA noted this ‘research’ when it dropped (apparently whining about unsurprising content):

“Click HERE to read more useless information that any parent of an autistic child would have told you for a large coffee and 15 minutes of respite time. Is this what we can expect from the partnership of ASA and Easter Seals?”

Kim obviously couldn’t be bothered with some of the report’s details, really didn’t care, or just skimmed the media story, and didn’t even read the actual report (personally, I’m voting for this possibility as likely). Of course it’s also entirely possible that Stagliano’s absence of mention about the divorce rate information in this survey, is due to lack of interest in the subject, or some other reason altogether.

Pleasantly surprising however, following the AoA post, is a small, yet more astute portion of commentary on AoA (yes, you read that correctly), authored by “Gale”:

It also sheds light on an often misreported urban legend of higher divorce rates for families with autism concluding “Families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third say their divorce had anything to do with managing the special needs of their children.”

Good on Gale for adding a little to the story here!

So what numbers were actually reported for divorce rates by Easter Seals?

No Special Needs (N=866) 39%
ASD (N=1573) 30%

30% ??? Not only is that 25% lower than the families with no special needs children (the ‘control group’) in this survey, it’s nowhere near the mythical 80% number.

But let’s be clear here. The Easter Seals report, while perhaps interesting, is not a scientific study.

While it is a fairly large survey, and one that contains a sizeable ‘control’ group, it has problems that make it very limited in its ability to lend support for conclusions about reality.

First of all, there is an obvious likelihood of selection bias. The survey respondents were solicited via an e-mail invitation from Easter seals, ASA, or Harris Poll Online, which means the respondents were likely to be already involved (to some degree) with at least one of those organizations (enough to be on some sort of contact list), and regular internet users. The survey respondents may, or may not be truly representative of parents with ASD children. The ‘control’ group may not even necessarily be representative of the parents of children with no special needs (the U.S. divorce rate for married couples with children is probably closer to the U.S. average of 48%).

There is evidence of one possible effect of such selection bias, and that is that this survey’s demographic profiles are not consistent with the most current autism epidemiology at all. A full 55% of the parents of ASD children were reported to be parents of autistic children, as opposed to 45% of the parents whose children were diagnosed with PDD-NOS or Asperger’s. This is fairly divergent from the current descriptive epidemiology which puts Autism at about 33% of the total diagnoses, and 67% for PDD-NOS and Asperger’s combined. Such a skewing toward autism diagnoses could represent any number of things (diagnostic inconsistency for example), but I think it’s certainly possible that selection bias (specifically, “self selection”) is at play here – e.g. parents who are already connected in some way to Easter Seals or ASA, may simply be more likely to be the parents of children with an autism diagnoses, and parental participation in such groups by parents of children with PDD-NOS and Asperger’s diagnoses may be considerably less, because affiliation with such organizations simply may be a lower priority for those parents. If this is the case, it would inadvertently exclude representation of a significant portion of the question’s target parent population. If the question’s target population is not representative, is the information accurate? It’s hard to know.

In the context of a sense of scientific rigor, there just isn’t much here. Surveys, and parent reports are just that, reports. As an example, diagnoses were not confirmed with any standardized and normed instruments that I can see. And, to be fair, scientific answering of the divorce rate question wasn’t really an objective of this survey in the first place.

I realize that a skeptical look at both the urban legend of 80% or higher divorce rates and the reported lower divorce rates from the Easter Seals/ASA survey doesn’t really provide any kind of clear conclusion. There will be those who believe that anti-autism advocacy groups like Autism Speaks have some sort of authority on the subject, and they probably won’t see anything wrong with the perpetuation of what looks more like urban myth for pity. There may also be those who believe that parents of ASD children are less likely to divorce (based on this survey, or their own beliefs), ascribing some sort of family-strengthening magic to having special needs children in and of itself.

As for me, I tend to think the actual divorce rate among autism families is probably pretty close to whatever the average is for all families. All families, and all marriages, have sources of difficulty, conflict, and compromise. They all have good too. Is there any reason to think that parents of ASD children are really that much different than most parents when it comes to divorce overall, one way or the other? So far, I haven’t seen any good scientific evidence to make me think so.

Some readers may think of me as one of the Evil Neurodiverse League of Evil Bloggers, and be wondering why I wouldn’t jump on an opportunity to say that having an autistic child is some awesome family-strengthening thing that makes a man more happily married than a father with typical children. I’m sorry to disappoint in this regard – while possible, and undoubtedly true for some, the science just isn’t out there to support the notion that such a statement is applicable to couples with autistic children in general. If you were hoping for something potentially more romantic, or something as equaly tragic (and real) as an 80% divorce rate among autism parents, I recommend:

Dr. Horrible’s Sing Along Blog.

IACC Strategic Plan: Good for us?

6 Mar

By ‘us’ I mean my idea of what the neurodiversity community is.

The IACC released their strategic plan for the future direction of autism research yesterday. This is the basic plan that will form the basis of US (and probably world) autism research for the next 10-20 years. It sets out what it thinks the problems are, what should happen to address those problems and what specific research targets should be set to help address those problems.

So, is it good for us?

On one hand it is. In some places the document makes a clear distinction between the need to address the disabling issues that autism can bring and leaves aside cure language:

It is critical for research to identify the methods and approaches that can be used to prevent the challenges and disabilities of ASD.

Cool. Fine by me. And yet later on in that same paragraph:

Having sound research on the risk factors and the environmental triggers for ASD ultimately may allow us to achieve the goal of prevention: preventing the development of the disorder in some people at risk or reducing the degree of severity in those affected.

Hmmm. Possibly less good. I don’t even really quibble at the ‘reducing the degree of severity’ phrase but prevention? Even researchers as established and august as Simon Baron-Cohen and Tony Attwood have suggested this is not such a great idea. I also don’t believe its a great (or necessary) idea.

There’s lots of good talk about support and education for adults and the need to recognise that autism is not a childhood condition. Amazing that such talk is needed when adults clearly make up the larger percentage of the autism population.

I’m not sure this is a cure-based document. I do think its a define-autism-as-a-medical-condition document which is again not such an accurate idea.

And so we turn to the ‘v’ word. Vaccines are given fairly short shrift in the plan. I didn’t think so at first. When I read this paragraph I was dismayed:

To address public concerns regarding a possible vaccine/ASD link, it
will be important over the next year for the IACC to engage the
National Vaccine Advisory Committee (NVAC) in mutually informative
dialogues. The NVAC is a Federal advisory committee chartered to
advise and make recommendations regarding the National Vaccine
Program. Communication between the IACC and NVAC will permit each
group to be informed by the expertise of the other, enhance
coordination and foster more effective use of research resources on
topics of mutual interest. Examples of such topics include: studies of
the possible role of vaccines, vaccine components, and multiple
vaccine administration in ASD causation and severity through a variety
of approaches; and assessing the feasibility and design of an
epidemiological study to determine whether health outcomes, including
ASD, differ among populations with vaccinated, unvaccinated, and
alternatively vaccinated groups.

This is in section III under the heading ‘what needs to happen’. As I say at first I thought this was terrible. But then I read it again and noticed that what the plan is actually saying is that the IACC and NVAC should talk about these things. They’re not committing money to them.

Vaccines in fact feature nowhere as a short or long term objective in the whole plan and are mentioned again once as a possible research opportunity for people to keep an eye on any developing science.

Overall its a mixed bag. Good on vaccine stuff, good on recognition of need for services, good for recognition of adults but ambiguous at best on its intent for the idea of curing autism.

Advocacy Success: NIMH Use of Stimulus Money Includes Services-Research

5 Mar

If you’ve read what I’ve written on the IACC process, and been able to get past my annoyance with the political maneuverings, you know that I’ve had great hope for the research into areas involving services and adult issues.

Given that, you can imagine that I was quite pleased to get this email from Ari Ne’eman of ASAN (the Autistic Self-Advocacy Network), discussing recent RFA’s (Requests for Applications) for research topics in specifically these areas.

Hello,

Recently, the National Institute of Mental Health released several Request for Applications (RFAs) on services-research topics relevant to autistic people and our families as part of a broader effort to identify NIMH’s priority areas for use of stimulus funds. The RFAs utilize funds specifically allocated under the recently passed American Recovery and Reinvestment Act (aka: the Stimulus bill). As you may be aware, the Autistic Self Advocacy Network and the broader autistic and disability communities have been lobbying for increased representation of services-research and bioethics issues in the NIH research agenda for some time. We’re pleased to share with you these RFAs, which hopefully will yield research that will have a positive impact for our community.

04-MH-104 Access to services by individuals with autism and their families. Engage well-characterized subjects and families in existing autism research activities in preliminary studies exploring variations in access to and use of services, identification of targets for services interventions, and exploration of how variations in service use affect family functioning in diverse populations. Contact: Denise M. Juliano-Bult, M.S.W. 301-443-3364, djuliano@mail.nih.gov

02-OD(OSP)-104* Ethical Issues in the Translation of Genetic Knowledge to Clinical Practice. Genetics and genomics have great promise for the development of personalized medicine, yet the ethical, legal and social implications of both the research and application of genetic and genomic knowledge and technology are far reaching. Studies are needed to better understand the factors that influence the translation of genetic information to improved human health and the associated ethical issues. Examples of studies include those to address ethical issues related to broad sharing and use of new genetic information and technologies for research to improve human health, human subjects protection in genetic and genomic research, the identifiability of genetic/genomic information and how our understanding of identifiability is evolving, return of research results and incidental findings to subjects, alternative models of informed consent for broad data sharing for research, and the impact of intellectual property (IP) issues on development of new technologies. OD(OSP) Contact: Abigail Rives, 301-594-1976, rivesa@od.nih.gov; NIMH Contact: Jean Noronha, Ph.D., 301-443-3367, jnoronha@mail.nih.gov

05-MH-101* Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism. Existing large integrated healthcare networks are needed to more efficiently conduct large-scale effectiveness trials in “real-world” patient settings. The NIMH solicits individual or collaborative, linked grant applications from researchers with experience conducting studies within large integrated healthcare delivery systems to develop and test infrastructure to efficiently conduct trials on the effectiveness of treatment, preventive and services interventions to improve care for people with mental disorders and autism. Applicants can propose studies to 1) demonstrate the ability to identify, recruit and enroll large patient populations into clinical trials, 2) harmonize electronic medical record data across multiple integrated systems for research use, 3) pool data for common analyses, and 4) build capacity for the collection and storage of biologic material. Contact: David Chambers, D.Phil., 301-443-3747, dchamber@mail.nih.gov

05-MH-103* Collaboration with AHRQ Comparative Effectiveness Research Program
In FY09 and FY10 the Agency for Health Research and Quality (AHRQ) plans to support research grants (PA-09-070) on comparative effectiveness of clinical treatments and services as authorized in the Medicare Prescription Drug, Improvement, and Modernization Act (MMA) Section 1013. MMA section 1013 mandates two mental health categories: Depression and other mental health disorders; and Developmental delays, attention deficit hyperactivity disorder and autism. NIMH is interested in funding ancillary studies including but not limited to: 1) studies on the comparative effectiveness of important new or existing technologies; and 2) assessment of the comparative effectiveness of treatments that are commonly administered to children but have been evaluated for safety and effectiveness in adult populations. Two year studies will contribute to successfully implement the mental disorders components of MMA Section 1013 by utilizing AHRQ networks ( e.g. EPCs, DEcIDE, CERTs, PBRN, ACTION, etc) to generate information for health care decision-making. Contact: Agnes Rupp, Ph.D., 301-443-3364, arupp@mail.nih.gov

04-MH-105 Developing interventions and service delivery models for the transition to adulthood. Conduct pilot studies to develop and test developmentally appropriate, evidence-based prevention interventions and service delivery models for youth with who are at high risk for, or experiencing severe mental illnesses who are transitioning to adulthood. Studies would propose strategies to address discontinuities in service systems and health care financing. Contact: Joel Sherrill, 301-443-2477, jsherril@mail.nih.gov

Furthermore, NIMH also released the funding of the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan as an RFA. ASAN has been active in lobbying for the inclusion of quality of life oriented research in the IACC’s priorities since this IACC’s inception in 2007. While having both positive and negative components, the IACC Strategic Plan includes services- and quality of life-research components, including research on meeting the needs of autistic adults. It can be found below.

04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Ann E. Wagner, Ph.D., 301-443-5944, awagner@mail.nih.gov

We encourage you to transmit this information to your contacts in the research and scientific communities, encouraging them to apply for funding for projects that will positively impact the lives of autistic people while working with the self-advocate community to ensure inclusive and participatory models of research, as we practice through our partnership with the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE). Please feel free to e-mail us at info@autisticadvocacy.org with questions on ASAN’s research advocacy and how you can get involved. If you are a researcher, interested in interfacing with ASAN and our research partner AASPIRE on research priorities, design and implementation, we encourage you to contact ASAN Board Member and AASPIRE Project Co-Director Dora Raymaker at dora@aaspireproject.org.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

Autism and Insurance

3 Mar

ResearchBlogging.orgOne of my favorite autism researchers is a guy named David Mandell. The reason is simple: he just asks good questions.

For example, he studied Vocational Rehabilitation and compared the results for autistics and non-autistic adults. There’s a guy looking at issues that will matter to me all too soon, and already matter to a lot of people already (people all too often forgotten even within greater the autism community: adults).

He looked at adult populations in psychiatric hospitals and found that many adults diagnosed with schizophrenia may be autistic.

Now he has addressed a big question: how much would adding insurance mandates for autism increase the premiums?

This question comes up a lot. For example, in California one of the big questions has been how can Kaiser get away without providing insurance coverage, even though California has an autism insurance mandate (AB88).

The YouTube video is about the first person to win coverage for therapies like Speech, Occupational and ABA from Kaiser:

Kaiser said this will “Significantly increase the cost” of insurance, with “their actuaries” estimating would be $5 to $7 per member per month.

As an aside, the Kaiser person in this meeting was dodging the question, and it is annoying that the interviewer let her do it. The question isn’t about how much it will cost, but the fact that California already mandates that the insurers cover the therapies and that kaiser is avoiding it’s legal responsibility.

As another aside–this is what insurance is for. We pay a little bit to share the risk. If it costs us all a little bit so that some small group gets help when they need it. We don’t question it when we are talking about, say, therapies for a stroke victim or someone in a bad accident. Why do we question it when it comes down to children with developmental delays?

Pennsylvania recently passed a mandate requiring autism insurance coverage with a $36,000 cap per year. Dr. Mandell works in Pennsylvania and used his state as an example in his paper, Quantifying the Impact of Autism Coverage
on Private Insurance Premiums.

That’s a RBQ (really big question) that comes up a lot when people are working on getting autism insurance mandates in their state: what will the cost be? Insurers, as one could imagine, claim the costs will be big. (again, avoiding the question of whether it is the right thing to do).

I won’t go into the details of the model Dr. Mandell’s team used. It was actually pretty straightforward, just as you would probably expect. Instead, let’s take a look at results. Figure 1 shows the increase in insurance premiums if autism therapies are covered.

Figure 1 from paper

Figure 1 from paper

The y-axis is the percent increase in insurance premiums, and the x-axis is the average expenditure per child with autism (in $1000’s). The model gives estimates for average expenditures from $10,000 to $36,000 (the cap in the Pennsylvania insurance mandate). Estimates are given for 3 different autism prevalences: 2.0 per 1000, 4.0 per 1000 and 6.7 per 1000. Note that 6.7 per 1000 is the same as 1 in 150.

Take a look at the highest estimate: $36,000 per child, 1 in 150 prevalence. Increase in insurance premiums? 2%. Yep, 2%.

Or, in the words of the study authors:

Even in the unlikely event that treated prevalence were to rise to the accepted community prevalence of 1 in 150 children, and per capita expenditures rose to $36,000 per year, the increase in the family contribution would reach $6.53 a month, or $78.31 per year

This may be the same amount as the Kaiser actuaries claimed. They claimed about $5-7 per “member”. Usually “member” means the primary insured (I.e. the parent whose job gives the insurance coverage). If, instead, they mean $5-7 per every insured family member, then Kaiser’s estimate is likely about 4x higher than prof. Mandell’s team’s calculation.

Prof. Mandell’s team recognizes that this $78.31 per year is likely an overestimate.

To that extent, the estimates presented here may overestimate actual increases to premiums, given that some healthcare expenditures would remain the same but now would be associated with an ASD diagnosis.

One reason they give is that many children with autism may already be receiving insurance paid medical treatment, but under a different diagnosis. I.e. doctors may be avoiding the autism label in order to get reimbursed. So, for some kids and some therapies, an “autism” mandate may just shift the costs already being paid by the insurance companies from some other diagnosis to autism.

Another reason why this estimate may be low comes to my mind, even though it isn’t discussed in the paper. I know this is anecdotal, but medical expenses are likely highest for younger kids. That’s when the OT, ST, and ABA type therapies will be most common. It doesn’t make sense that the average expenses would be the same for older kids as for younger kids. So, when they calculate based on $36,000 per child per year, they are likely overestimating the expenditures for the older kids (say ages 10-20).

Another possible cause of over-estimating the expenditures. When they estimate for the full CDC prevalence (1 in 150, or 6.7 per 1000), they are including all ASD’s. People with, say, Aspergers or PDD-NOS have significant challenges, no doubt. However, my guess is that they do not require the same level of medical expenses as someone with autistic disorder. So, by assuming the prevalence for all ASD’s, Dr. Mandell’s group may have overestimated the expenses.

Now, it is worth noting that when one includes ABA in the picture, $36,000 per year may not cover everything. A 20 hour week program could cost more than $36,000.

But, leave all of that out for now. Take the high end estimate and ask, will a 2% increase in premiums to make such a big difference? I know there is a risk of this discussion getting sidetracked into an ABA discussion. But, consider adding 2 sessions a week of speech therapy and/or 1 session a week of OT to a young autistic kid’s life. Think of the difference that could make. These are life-long benefits. Isn’t that worth something comparable to, say, the amount of insurance premiums we pay to cover heart surgeries or other very expensive medical interventions for adults?

Or to put it another way: if my insurance company said, “Sure, we can give your autistic kid these therapies now. But, if you ever have a heart attack, you are going to die on the table because we won’t pay for heart surgery.” I’d sign on the bottom line. No, I am not asking everyone to make that choice, or to sacrifice their own benefits for other people’s kids. But, isn’t improving the life of a young child worth at least as much as what we spend to improve the life of older adults?

James N. Bouder, Stuart Spielman, David S. Mandell (2009). Brief Report: Quantifying the Impact of Autism Coverage on Private Insurance Premiums Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0701-z

This paper has also been discussed in the Translating Autism blog, which is where I found out about it.

More bad Kirby spin

1 Mar

And it is pretty weak this time, so I’ll make it brief.

David Kirby has a new blog post up on the Age of Autism.

David Kirby: US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children – Will Media Take Note?

He reports on a meeting of the National Vaccine Advisory Committee and their consensus statement. Mr. Kirby quotes the Concensus Statement:

As they stated in a draft “consensus statement”:

“(There is) a strong desire to study the health impact of the immunization schedule, potentially through a ‘vaccinated vs. unvaccinated study’. Outcomes to assess include biomarkers of immunity and metabolism, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and learning disabilities. The inclusion of autism as an outcome is desired”

Implying that the NVAC has a “strong desire”.

Oh, wait, he didn’t exactly quote, he changed something into (There is). He provides the original, so read and compare:

Public and stakeholder engagement activities have identified a strong desire….

Yeah. It isn’t NVAC who has the “strong desire”, but, well, the organizations Kirby represents (and may be paying him).

Kirby then throws in some of his boilerplate: story ideas he wants others to do.

It isn’t even good spin anymore.

Oops! The Kirby Autism-Speaks connection.

26 Feb

David Kirby just published a piece at the Huffington Post about an Autism Speaks interview that supports the idea that we need to do research on the proposed autism-vaccine connection.

No surprises there.

I was laughing at myself on the way home from work, thinking “Heck, if I were one of the Generation Rescue crowd, I’d be claiming a conspiracy. I’d be saying, ‘looks like Generation Rescue and Autism Speaks and the rest are on a concerted effort to ramp up hype on vaccines”.

But I’m not that paranoid.

Then David Kirby posted to the EOHarm yahoo group about his Huffington Post piece.

He included an email exchange between himself and Peter Bell of Autism Speaks. [edit: Note that Peter Bell is not just anybody at Autism Speaks. He’s Executive Vice President. See the first comment below]

Oops.

Here’s Peter Bell telling David Kirby about the interview

From: Peter Bell [mailto:pbell@…]
Sent: Wednesday, February 25, 2009 5:29 PM
To: David Kirby
Subject: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

I think you will find this of interest: http://www.autismspeaks.org/science/science_news/nichd_alexander_interview.php

We just posted this on our website.

And David Kirby’s response. He’s going to blog it!

From: David Kirby [mailto:dkirby@…]
Sent: Wednesday, February 25, 2009 6:32 PM
To: Peter Bell
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

Wow!

Amazing

I will write about this – thanks

DK

For some reason, Mr. Bell doesn’t want people to know that he tipped David Kirby off:

—–Original Message—–
From: Peter Bell [mailto:pbell@…]
Sent: Wednesday, February 25, 2009 7:03 PM
To: David Kirby
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

You just happened to find this on our website, right? J

And Mr. Kirby agrees to keep the story…only he didn’t. He forwarded the entire exchange to the EOHarm list.

—–Original Message—–
From: David Kirby [mailto:dkirby@…]
Sent: Wednesday, February 25, 2009 7:24 PM
To: ‘Peter Bell’
Subject: RE: NICHD Director Dr. Alexander Discusses the Need for More Research on Environmental Risk Factors for Autism Spectrum Disorders

I go there often, yes!

The piece will be up in minutes

NICE JOB!

dk

Oops. Again.

I don’t really know why Autism Speaks wants to keep their connection with David Kirby a secret. I mean, it’s pretty clear that AS has vaccines as their top priority (they didn’t mention anything else about the IACC’s strategic plan).

OK, I can see why Autism Speaks would want a bit of distance between themselves and David Kirby and Generation Rescue. It can’t help fundraising efforts, for one thing to be “just another anti-vaccine autism organization”.

But one more time: Oops!

Did you think that was it? More MMR bull arrives

25 Feb

The recent decision by the Special Masters in the Autism Omnibus case that MMR/thiomersal can’t cause autism according to evidence presented by HHS and lack of evidence presented by Master et al hit the mercury militia hard. They genuinely thought they were going to win.

But, of course, there was a ‘Plan B’ ready just in case. Today we see its co-ordinated unveiling. In part one, that scientific heavyweight Jenny McCarthy, together with her partner Jim Carrey released a press release:

Jenny McCarthy and Jim Carrey’s Los Angeles-based non-profit autism organization, today announced that the United States Government has once again conceded that vaccines cause autism…

Both the inference and the statement of fact are in error here. The United States Government has _never_ conceded that vaccines cause autism. I challenge McCarthy and Carrey to show the statement that contradicts me. Team McCarrey’s announcement today also fails to establish that the US government have conceded vaccines cause autism.

Of course, the historical reference is to Hannah Poling. As has been discussed numerous times, Hannah Poling’s autism has not been shown to have been caused by vaccines. I have asked various people, including David Kirby numerous times to provide back up to their belief the government have said vaccines caused ehr autism. They cannot. They have not. In point of fact, only three of Hannah Poling’s symptoms that were described by both HHS and a scientific case study co-authored by her father as those being caused by vaccines, tally with the DSM (IV) criteria for ASD.

The case of Hannah Poling is a red herring.

As we shall see, so is this ‘new’ case.

Team McCarrey go on:

The announcement comes on the heels of the *recently unsealed* court case of Bailey Banks vs. HHS

If by ‘recent’ one means July 2007 then they may have a point. But I don’t think ‘recent’ can really apply to a case which has had open access to it (Kathleen blogged about it in May 2008) for about a year and a half. So why lie? To add to the drama, whip up mystery and confusion of course.

But now we get to the meat of it – the actual ruling. In Part II of today’s coordinated attack, RFK Jr and David Kirby blogged about this case.

Kennedy jumps straight in:

…last week, the parents of yet another child with autism spectrum disorder (ASD) were awarded a lump sum of more than $810,000 (plus an estimated $30-40,000 per year for autism services and care) in compensation by the Court, which ruled that the measels-mumps-rubella (MMR) vaccine had caused acute brain damage that led to his autism spectrum disorder.

Whereas David is a tad more circumspect:

Is vaccine-induced ADEM (and similar disorders) a neurological gateway for a subset of children to go on and develop an ASD? That question will now become subject to debate…Special Master Abell had no trouble linking MMR to ADEM in Bailey Banks’ case. But linking his ADEM to PDD/ASD was more difficult.

So, lets rewind a little. Bailey was awarded a payment because he was found to have suffered vaccine induced damage. Cool. Thats the system working as it should – a child is damaged by a vaccine, they get compensated. What the MMR vaccine was established to have done in Bailey’s case was cause something called ADEM. What McCarthy, Carrey, Kennedy and David are now all claiming is that this ADEM resulted in an ASD diagnosis.

They rest their case on the conclusion of Special Master Abell:

The Court found that Bailey’s ADEM was both caused-in-fact and proximately caused by his vaccination. It is well-understood that the vaccination at issue can cause ADEM, and the Court found, based upon a full reading and hearing of the pertinent facts in this case, that it did actually cause the ADEM. Furthermore, Bailey’s ADEM was severe enough to cause lasting, residual damage, and retarded his developmental progress, which fits under the generalized heading of Pervasive Developmental Delay, or PDD. The Court found that Bailey would not have suffered this delay but for the administration of the MMR vaccine, and that this chain of causation was not too remote, but was rather a proximate sequence of cause and effect leading inexorably from vaccination to Pervasive Developmental Delay.

On the fact of it, it looks like they are right. But they aren’t.

Bailey has a diagnosis of PDD-NOS (Pervasive developmental disorder not otherwise specified) which is indeed a subtype of ASD.

However, whilst PDD-NOS is a subtype of ASD (alongside autism etc). ASD is in turn a subtype of PDD. As the National Dissemination Center for Children with Disabilities notes, the term PDD actually refers to a category of disorders and is not a diagnostic label. So when Abell refers to Bailey’s vaccine induced ADEM as leading to PDD he is not referring to ASD. He is referring to PDD. Not PDD-NOS, which _is_ a subtype of ASD but PDD, of which ASD itself is a subtype. Or, to quote Wikipedia:

PDD-NOS is often incorrectly referred to as simply “PDD.” The term PDD refers to the class of conditions to which autism belongs.

Abell made something of a worrying statement in his conclusion. I’ll quote from David Kirby:

Abell also chided MacDonald for his assertion that “all the medical literature is negative” in regards to an ADEM-PDD link. “However, soon thereafter, he corrected this statement by clarifying, ‘I can find no literature relating ADEM to autism or [PDD],'” Abell wrote. “It may be that Respondent’s research reveals a dearth of evidence linking ADEM to PDD, but that is not the same as positive proof that the two are unrelated, something Respondent was unable to produce. Therefore, the statement that ‘all the medical literature is negative’ is incorrect.”

Was any evidence that there _is_ a link between ADEM and PDD produced? I’ll have to read through more carefully. Its worrying that the SM is reduced to ‘chiding’ a witness for such a thing as a clarification of terms. Wasn’t he more worried that there was an extreme lack of evidence linking ADEM to PDD at all? Did Petitioners produce _any_ evidence that there was a link? A quick search of PubMed reveals nothing for ‘ADEM autism’ or ‘ADEM PDD’. I don’t want to second guess a Special Master but it does make me worried that maybe he simply didn’t get some of the science.

David also lists some of the symptoms of ADEM:

Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.

None of these say autism to me. I also did fine one ADEM paper in PubMed together with measles:

We report a seven year old male with measles associated acute disseminated encephalomyelitis (ADEM) despite having received measles vaccination in infancy. The diagnosis was based on serum antimeasles antibodies and MRI brain. The patient was managed with high dose corticosteroids along with supportive measures. There was a complete neurologically and physica recovery.

There was a complete mental and physical recovery. This doesn’t seem to indicate causation or autism.

In my opinion based on what I’ve read so far here we have a little boy who either already had or was on the cusp of PDD-NOS. He was also vaccine damaged resulting in ADEM….and thats where the link breaks down. It might be enough for 50% and a feather but the fact that PDD is not PDD-NOS, together with the total lack of any evidence I can see to link ADEM to PDD, let alone PDD-NOS speaks volumes.

One Click Hacks and Homophobes

22 Feb

As blogged by Anthony at Black Triangle the One Click Group – who say they are:

…a British-based international health advocacy pressure group and worldwide raw news hub…

described Brian Deer and his involvement with the MMR case thusly:

By all accounts a gay man and therefore unlikely ever to have to face the multiple vaccine risk agonised over by parents from around the world in relation to their children…

Nice. Sounds to me like they’re a bunch of homophobic stupidniks to me. As Anthony says:

Even if Deer is homosexual, it does not necessarily mean he has no stake in vaccine safety. Homosexuals are not some mysterious alien presence in our society, they have families which include small children. Homosexuals can even adopt children.

Unless you’re a Daily Mail reading OneClickTwit of course.

They are anti-vaxxers of course and really really don’t like Brain Deer much at all. This makes the JABS loonies recently in evidence in the monumental ‘Wakefield‘ post on this blog big, big fans of theirs naturally. Amusingly, these same JABS loonies have been complaining about the horror of Brian Deer _making_ the news and then _reporting_ on the news regarding Wakefield. Not that he has, but thats how they see it. The amusing thing is that one of the straplines of the OneClickGroup is:

We not only break the news, we also make it.

They also proudly boast of receiving ‘7,000 – 33,000 hits per day’…..woah…big time baby!

Just for fun, I ran LB/RB, JABS and OneClickGroup through the Compete analyser which analyses Unique Visitors (a much more reliable indicator of traffic than ‘hits’):

Sadly, you’ll notice only two lines there. OneClickGroup didn’t generate enough statistics to be measurable.

So, this member of the antivaxosphere, carried on from homophobic attacks on Brian to carrying an alleged ‘out of control’ attack from Brian on their owner/Director/whatever – one Jane Bryant. Here’s how its ‘reported’ on the OneClickGroup website:

Brian Deer Is Out Of Control

On Monday 7 April 2008, with the Defence presentation for Dr Andrew Wakefield at the General Medical Council MMR Vaccine Trial UK concluded, Brian Deer went berserk in the Press Room of the General Medical Council. This incredible aggressive behaviour is not that of a responsible and objective journalist with ethics covering a story in the public interest….I entered the GMC Press Room to discover Deer holding court over what he clearly perceived to be his case with the assembled media. Comfortably sprawled in lounging lizard position

Out of control…went berserk…incredible aggressive…holding court…lounging lizard…

and these descriptives are used before Bryant even _begins_ her description of Brian’s behaviour. Thank goodness for impartial media!

When she does get to that transcript (which has clearly been edited) it reveals _more_ editorialising and less fact.

When asked if Deer was the complainant and if this was his case with the GMC, Deer simply exploded. Springing to his feet, placing his body inches from mine and invading my space, Deer proceeded to threaten, to rant and to jab his fingers close to my face.

Brian Deer: “No! I’ve not complained! I’ve got letters from the GMC saying I’m not the complainant! Ask me the question again! Ask me and I’ll tell you!”

Deer continued ranting: “So, you’ve this, um, dribbling idiot here,” gesturing towards investigative writer Martin J Walker who has exposed Deer’s vaccine activities in the aforementioned Complainant, “pumping out this information and you believe it and this is what this whole MMR thing has been about! Andrew Wakefield enjoys giving evidence! You get these CLOWNS who just MAKE THNGS UP as they go along!”

I wondered if any other members of the press ( the ones Brian Deer was holding court over) had reported on this behaviour from Brian. That of threats, invasion of body space and jabbing his fingers close to Bryant’s face. Funnily enough, the answer is ‘no’ – nobody from the other members of the press Brian was apparently ‘holding court’ over when Bryant arrived noticed this. I can find no record of this behaviour in any mainstream media. And there were plenty there. How odd.

Its also worth noting that Brian was right. He is _not_ the complainant and he _does_ have letters from the GMC to establish that fact.

Next in Bryant’s highly selective account was the issue of who was paying Brian. At the end of which despite not mentioning any intimidation she reports:

At this point, people in the foyer piled in to the doorway of the Press Room to witness a fully grown male journalist attempting to intimidate a press colleague and deploying classic bully boy techniques against a very small woman on her own.

What bully boy techniques exactly? Answering her questions? Or is this more of the finger jabbing and space invasion that only Bryant witnessed and reported on? Lets not forget that Bryant also directly accused Brian of threats (‘Deer proceeded to threaten’) – no sign of a threat so far…lets continue.

Jane Bryant: “Why are you being so abusive?”

Brian Deer: “Of who?”

Jane Bryant: “Of the parents, of the children…”

Brian Deer: “What parents have I been abusive to?”

Jane Bryant: “You have just been abusive to me.”

Brian Deer: “Are you a parent?”

Jane Bryant: “Yes, I am a parent, I’m also press. Why are you being so abusive? Get away from me, Brian! Stay away from me.”

With Brian Deer out of control, Editor Polly Tommey of The Autism File showed support.

Polly Tommey: “Stay away from her Brian, keep away. Look, you’re a journalist, give her some space.”

Is Bryant parent to an autistic child? I can’t find anywhere that says she is.

Anyway, notice how Tommey of the antivax magazine ‘The Autism File’ also chimes in. These two poor cowering ladies who are in terror of a man answering their questions. I’ll say it again. I can find nowhere else that reports on the eminently newsworthy story of two women being threatened by an out of control Brian Deer – other than OneClickGroup itself. In a room full of the media no one takes notes, no one turns on their dictaphones and no one turns on their cameras. The _only people_ who capture this threatening, out of control Brian Deer are a couple of anti-vaxxers. What an amazing coincidence.

At this point in the proceeding, Brain Deer calls for security. He has to call them again later that day.

Later on in her piece, Bryant accuses Brain Deer of damaging the equipment of Polly Tommey.

Interestingly, the only person’s equipment that got damaged that day was that of Polly Tommey, Editor of The Autism File. Having left her belongings in the Press Room whilst she went to conduct an interview in the foyer, two of the recordings destined for Autism One Radio were purposefully deleted by someone. I will leave One Click readers to surmise just who the perpetrator might be, who had the access and the motive.

She also says:

The GMC has now categorically on the record refused to deny Brian Deer’s complainant status. They will simply not comment on Deer. So much for Deer’s GMC back up

Which, as we know is simply incorrect. I look forward to Bryant’s correction on her massively popular website.

If you want to see the depths and lengths that St Andy’s fan Club will stoop to, look no further than this. The word of a homophobic woman who seems to mislead people about her status as parent to an autistic person (assuming I’m right about that) and who wants to paint a man as an out of control tyrant when I suspect he was just a bit pissed off.

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Another misinterpreted study. This time they are misusing Israel data

22 Feb

Kent Heckenlively from the Age of Autism blog has recent post up on a study out of Israel on autism. In it, he notes that the “incidence” of autism in Israel actually dropped for a few years

What’s curious, though, is how this population of medical professionals who were supposedly good at identifying and diagnosing autism in 1999, then had a drop of more than 40% by 2002. Did they lose their newly-acquired skills in a sophomore slump? If I’m not mistaken, those were also the years of the vaccine-autism “panic” which began shortly after the publication of Dr. Andrew Wakefield’s article in the Lancet, linking the MMR shot and autism. Was there a drop in vaccination rates in Israel after the Wakefield publication? Did vaccination rates then subsequently go up in later years?

Here’s the figure.

Figure 1 from Israel Autism Paper

Figure 1 from Israel Autism Paper

Let’s do this quickly. The interpretation is nonsense. Start from the fact that Google Ph.D.’s seem to rarely check simple facts using google.

Enter “Israel Vaccine Schedule” into google. The top link is a WHO site.

Take a look at how the MCV (Measles Containing Vaccine) coverage has varied with time.

MCV uptake was increasing steadily up until 2003, when it dropped for two years.

Year MCV Uptake Measles cases
1998 97% 8 (Year of Wakefield paper)
1999 97% 14
2000 97% 36 (year “incidence” starts to drop in Israel
2001 96% 19
2002 98% 2
2003 95% 124
2004 84% 116 (year MCV uptake drops)
2005 96% 2
2006 96% 9
2007 96% 539 (measles spike)

Obviously the drop in autism “incidence” in Israel isn’t related to measles vaccines–the drop in uptake happened after the drop in autism “incidence”. Note that I put “incidence” in quotes. The paper isn’t measuring incidence. I’ll get to that later.

In 2007, something else happened. Measles cases spiked. Yep, 3 years after vaccination rates dropped, there’s a big spike in measles. Are they connected? Possibly. I would want to see information like how many of the 539 measles cases were children 4-5 years old, for example.

Other issues with the paper.

1) they don’t give “incidence” or “prevalence”, really. They are giving the number of people who are getting services for autism. Sorta like the California DDS data. Why is this important? We don’t know how easy it is to qualify for services. We also don’t know how hard they are looking for people with autism. It isn’t the same thing as a measure of all the people with autism.

2) Note that 97.5% of the people with autism are Jewish. About 25% of the population in Israel is non Jewish (if Wikipedia is accurate). So, is being Jewish a “risk factor”, or is there an issue with access to services.

3) According to Mr. Heckenlively, the prevalence of Autism in Israel is 1 in 2,400. I guess low prevalence numbers invalidate studies when they are in Denmark, but not when they are in Israel?

By the way, consider that low “incidence” value for Israel. Now look at their vaccine schedule (I am only listing those for very young children)

DTaPHibIPV: 2,4,6,12 months
HepA: 18, 24 months
HepB: Birth, 1, 6 months
MMR: 1 year, 6 years

Hmmm. Remember how Israel has a low autism “incidence”?

Look at that first big combo vaccine–5 vaccines at once. I guess combo vaccines don’t cause autism, eh?

HepB is given at birth. I guess that isn’t a risk factor either, eh?

Separating out the combo vaccines, I count 28 different vaccines given by 24 months in that vaccine schedule. So much for “too much, too soon”, eh?

Of course, this is stretching the Israel data waaaay too far. Of course we can’t say that the Israel data prove that HepB, combo vaccines and too-many-too-soon are not risk factors. Just like we can’t use these data to support Dr. Wakefield’s hypotheses.

I’m glad to see autism studies come out of new countries. Let’s not use data with big limitations to support our preconceived ideas, shall we?

(note, I made corrections shortly after publishing. These did not change the content substantially. I did change the title to clarify that it is not the Israeli researchers who are misinterpreting the data)

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