Archive | October, 2008

Outcomes for autistic people

3 Oct

If I had a penny for everytime so know-nothing mercury zealot told me that by not chelating my autistic child (or HBOT/Lupron/Coconut kefir/Foot detox/clay bath/whatever) I was condemning xyr to a miserable life I could retire early.

My response has always been the same – ‘you’re full of what makes the grass grow green’.

I’m of the opinion that what makes the biggest difference to an autistic child’s educational prospects and hence their adult lives is how you teach them both formally (speech therapy etc) and informally (to be self-confident, to be told off when they are being naughty, to not feel that their stimmy behaviours are bad etc). So it was a pleasant surprise to come across this news article today.

She interviewed 41 adults, spending eight hours with the now 22- to 46-year-olds and their parents or spouses, assessing whether they would still be considered autistic, since the standard has changed. She tested their IQs and evaluated their quality of life.

McMahon and Farley were surprised to find half were doing better than what parents and teachers thought was possible. They had full- or part-time jobs. A few are married and have children. They have friends or acquaintances. One man is no longer considered autistic, having taught himself how to interact by watching movies and reading books.

I know what you’re thinking – these were adults with Aspergers syndrome, right? Well, no. These adults who were diagnosed with _autism_ between twenty to forty years ago (1968 – 1988) when the DSM II and then III would’ve been in effect.

DSM II (1968)
[autism was not mentioned; the word appears only under the following category]

295.8 Schizophrenia, childhood type

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical and withdrawn behavior; failure to develop identity separate from the mother’s; and general unevenness, gross immaturity and inadequacy of development. These developmental defects may result in mental retardation, which should also be diagnosed.

DSM III (1980)

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age

B. Pervasive lack of responsiveness to other people (autism)

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

First things first. I severely doubt if _any_ of these adults received _any_ of what would be considered biomedical interventions today. Why? Simply because the idea that a vaccine could cause autism wasn’t around in 1968 – 1986. The youngest would’ve been twelve when Wakefield first started his foolishness.

So what we have, it would seem, is a 50% ‘recovery’ rate (based on what biomeddlers consider recovery) with the only basic interventions being education and time. One of the subjects is interviewed:

Pond says he felt alone and unaccepted growing up. Struggling to understand what was going on in grade school, he would blank out so intensely that adults worried he was having seizures. As a teen, he wished he could take a pill to make his disorder disappear.

Something else that wasn’t around so much in those days was a neurodiversity movement. If there had of been, maybe this poor guy would’ve been able to realise that people who would accept him were there. Its testament to his own strength and will (and the support of his parents no doubt) that he made it to where he is now.

But – there’s always a but – this same follow up found that 50% of these people:

But the other half live in group homes or with parents. They may have jobs but need supervision. They have few to no friends. One works as a janitor two hours a day and returns home to his rituals: watching movies and routinely checking for the mail.

Not ideal, but to be honest, its hardly terrible either. I very much look forward to the study being formally published. In the meantime, this is yet more evidence of the innate strengths autistic people have. Its much deeper and much more pronounced than anyone could ever have thought.

Mental Health Insurance Parity in the U.S.?

2 Oct

One of the big issues in the U.S. autism communities right now is health care. Without insurance coverage, most people don’t really have health care, so healthcare=insurance for all practical purposes.

People with autism can be expensive from a health care perspective. The most obvious examples of this are for children who need occupational, speech and, sometimes behavioral therapies. Even just counting the speech and occupational therapies, bills can hit $20,000 or more a year for a single child.

Insurance plans tend to exclude these therapies for one reason or another. “Developmental delays” aren’t covered, for example. Since autism is often covered under mental health, there are multiple ways to not give coverage.

This has led some states to implement “Mental Health Parity” acts. These require an insurance plan to give the same coverage for Mental Health as for regular health issues. So, if, say, a stroke victim would be given speech therapy 3 times a week for years to help recover speech, the insurance plan would have to give the same therapy to a person with autism (to pick the example most people reading this blog would key in on).

There are two big problems (and a lot of little problems) with this. First, and most obviously, only a few states have implemented Parity legislation. So, if you are in California, you may have coverage, but if you are in, say Nevada (right next door) you probably don’t.

There has been a big push this year to get more states to join in. But, even if all the states had Parity laws, there’s still another big fly in the ointment: big companies don’t need to follow state laws on insurance.

Yep. Let’s say you work for ReallyBigCompany in a state with a Parity law. You think, “Aha, they just passed a law, I’m in!”. Not if ReallyBigCompany is what’s called “Self Funded”. That’s where the company insures itself. In that case, they fall under a U.S. Federal law: ERISA.

It get’s confusing quick, but at a simple level, large companies have a loophole to get out of covering autism.

If only the Federal laws (ERISA) had mental health parity.

Enter Patrick Kennedy, congressman from Rhode Island. He has sponsored H.R. 6983, The Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act.

This act sets out to

…amend section 712 of the Employee Retirement Income Security Act of 1974, section 2705 of the Public Health Service Act, and section 9812 of the Internal Revenue Code of 1986 to require equity in the provision of mental health and substance-related disorder benefits under group health plans, and for other purposes.

The Employee Retirement Income Security Act being…ERISA.

Yep, it’s possible that there could be a big change in the insurance world.

The bill has passed the House. According to DrugMonkey, the bill has been added to the economic bailout package in the Senate.

According to Speaker Pilosi’s website.

An Overview of the Bill’s Key Provisions

Requires equity in financial requirements. Under the bill, an insurer or group health plan must ensure that any financial requirements – such as deductibles, copayments, coinsurance, and out-of-pocket expenses – applied to mental health and addiction benefits are no more restrictive or costly than the financial requirements applied to comparable medical and surgical benefits that the plan covers.

Requires equity in treatment limits. Under the bill, a group health plan must ensure that the treatment limitations – such as frequency of treatment, number of visits, and days of coverage – applied to mental health and addiction benefits are no more restrictive than the treatment limitations applied to comparable medical and surgical benefits that the plan covers.

Does not mandate mental health benefits. The bill does not mandate insurers or group health plans to provide any mental health coverage. The bill’s provisions only apply to plans that choose to offer mental health coverage.

Exempts certain businesses. The bill exempts small businesses with 50 or fewer employees. It also exempts those businesses that experience an overall premium increase of 2 percent or more in the first year and 1 percent in subsequent years.

Does not mandate out-of-network benefits. The bill simply states that if a plan already offers out-of-network benefits, it must offer out-of-network benefits on the same terms for mental health services as it does for medical and surgical services.

Does not pre-empt stronger state parity laws. The bill establishes a federal floor but permits states to go further to protect their citizens. This bill would not supersede any state law that provides consumer protections, benefits, rights, or remedies stronger than those in the bill.

Explicitly permits medical management of health benefits. The bill allows the use of medical management tools that are based on valid medical evidence and pertinent to the patient’s medical condition so that specific coverage is not arbitrary in its application and more transparent to the patient.

Provides for enforcement. The bill provides remedies to protect beneficiaries’ rights and permits enforcement of the bill’s equity requirements by the Internal Revenue Service, the Department of Health and Human Services, and the Department of Labor.

This appears to this reader to include a classic loophole: the “carveout”. Note that: “The bill does not mandate insurers or group health plans to provide any mental health coverage“. That means (a) your company can opt to only offer regular health insurance and (b) (the biggie) they could offer two health plans, mental health and regular health.

Why is that important? If you have two plans, there is no parity. It’s more strange legal stuff, but let’s do this as an example: Your company offers you ReallyBigCompany_Health and ReallyBigCompany_MentalHealth as two separate plans. The whole idea of “Parity” is that you get the same benefits for the mental health conditions as for regular health–in the same plan. Since your mental health plan (in this example) is not the same as your regular health, you have no regular health benefits to compare with.

That took me a while to get, so don’t worry if you are confused the first time.

Bottom line–it is possible that the insurance outlook in the U.S. could take a big change. I know people who have been trying to get confirmation that autism is covered in this bill. Unlike some State laws, the Federal law doesn’t specifically name any conditions. This should be a good thing, since, for example, they can’t say, “the law says Autism, and you have PDD-NOS…sorry”.

This is something to watch.

Good Information being spread on Capital Hill

2 Oct

Last week, there was a briefing for U.S. legislators by Mr. David Kirby and Mr. Mark Blaxill. As you can imagine, the topic was vaccines and autism. As you can imagine, there were some inaccuracies and there was at least one outright misrepresentation.

I applauded an effort by Amy Pisani of Every Child By Two, who wrote the staffers ahead of the meeting. I was also appreciative of a letter by Voices For Vaccines.

Well, now I give a great big thank you to Congressman Waxman. Congressman Waxman is the chair of the Congressional Committee on Oversight and Reform. To put that in perspective, “Oversight and Reform” is the committee that Congressman Dan Burton used to investigate autism and vaccines. (a very good discussion of what went wrong there is in Autism’s False Prophets).

Congressman Waxman’s office sent out a “Dear Colleague” letter. It is a good, succinct discussion of autism and vaccines, and, as such, I think it worth posting. And forwarding to people who may have questions about this issue.

It’s also worth thanking Congressman Waxman for taking the time to work on autism issues.

Resources Regarding Vaccines and Autism

October 1, 2008

Dear Colleague,

Since 1998 some people have been raising concerns that there may be an
association between childhood immunizations and autism spectrum
disorder. I am writing to let you and your staff know that there are a
number of resources available to understand what the science says
about whether vaccines could contribute to autism.

Institute of Medicine report on vaccines and autism

In 1999 the Department of Health and Human Services contracted with
the Institute of Medicine (IOM) to review a number of different
vaccine safety issues and to make recommendations about future
research needs. IOM convened a committee of experts that was carefully
vetted for conflicts of interest. The committee issued nine reports,
all of which are available on line at: http://www.iom.edu/CMS/3793/4705.aspx.

In 2004, the committee issued its final report, which analyzed the
studies, published and unpublished, that looked at two theories:
whether the Measles-Mumps-Rubella (MMR) vaccine could cause autism;
and whether the mercury-containing vaccine preservative thimerosal
could cause autism. The committee concluded that the “evidence favors
rejection of a causal relationship between thimerosal-containing
vaccines and autism” and the committee also concluded that the
“evidence favors rejection of a causal relationship between MMR
vaccine and autism.” This report is available at:
http://www.iom.edu/CMS/3793/4705/20155.aspx.

Other resources on vaccines and vaccine safety

Since the IOM report was published there have been additional studies
that looked at a possible link between vaccines and autism. Below are
several other links to government or private organizations with
helpful information about the latest research into vaccines, vaccine
safety, and autism and vaccines:

The Centers for Disease Control and Prevention
http://www.cdc.gov/ncbddd/autism/vaccines.htm

National Network for Immunization Information
http://www.immunizationinfo.org

Institute for Vaccine Safety at Johns Hopkins University
http://www.vaccinesafety.edu

American Academy of Pediatrics
http://www.aap.org/healthtopics/Immunizations.cfm

Information regarding mitochondrial disorders and vaccines

Another concern that has received some attention is whether people
with mitochondrial disorders are more susceptible to vaccine injury.
This issue was in the media after it became public that in 2007, the
Vaccine Injury Compensation Program (VICP), the no-fault compensation
program for people who have been injured by immunizations, compensated
nine-year-old Hannah Poling for injuries she sustained from her
immunizations. Hannah Poling suffered from a mitochondrial disorder,
which is a genetic or acquired defect in the part of each cell that
helps produce energy. People with these disorders are susceptible to a
number of stressors, including fever, illness, dehydration and certain
kinds of medication. In Hannah Poling’s case, after her immunizations
she developed a fever, lethargy, irritability, and other symptoms of
encephalopathy. These symptoms worsened over a period of months to
includ! e muscle weakness and features of autism. Instead of taking
this case to the vaccine court, the VICP conceded the case and agreed
to compensate Hannah Poling.

This case raised concerns that there may be an association between
mitochondrial disorders and autism. Mitochondrial disorders are poorly
understood and there is much research that needs to be done. However,
according to the United Mitochondrial Disease Foundation: “There are
no scientific studies documenting that childhood vaccinations cause
mitochondrial diseases or worsen mitochondrial disease symptoms. In
the absence of scientific evidence, the UMDF cannot confirm any
association between mitochondrial diseases and vaccines.” This
statement is available at: http://www.umdf.org/site/c.dnJEKLNqFoG/b.3616911/apps/s/content.asp?ct=5087517.

Following this case, NIH, HHS, and CDC organized a workshop entitled
“Mitochondrial Encephalopathies: Potential Relationships to Autism.”
The workshop was held on June 29, 2008 in order to explore this
complicated topic and panelists included experts from around the
country. The proceedings from this workshop state that because
acquired infections and the associated inflammatory responses are a
known trigger for mitochondrial disease, “the workshop panelists
strongly encourage vaccinations in the hundreds of children they treat
for mitochondrial disease.” A summary of this workshop is available
at: http://www.ninds.nih.gov/news_and_events/proceedings/20090629_mitochondrial.htm

CDC has additional information on its website at:
http://www.cdc.gov/ncbddd/autism/mitochondrial.htm

I hope you find these links useful. If you are interested in other
resources, please do not hesitate to call Sarah Despres or Dr. Stephen
Cha on my staff at 5-5056.

Sincerely,

/s
HENRY A. WAXMAN
Member of Congress

Reality bites back II

2 Oct

Its all going wrong for the believers of the vaccine/autism religion. This was supposed to be the time of their Fall offensive, spearheaded of course by Mother Warrior Jenny McCarthy and her appearance on the Oprah Winfrey show.

So far though, the media seem markedly less keen to talk to her about her recovering/no, recovered/ah….recovering/no, recovered/oh whatever autistic child. And the science is beginning to get equal air time. Recently, Dr. Ari Brown, Dr Lou Cooper and our very own Ken participated alongside a couple of minor league celebs on a discussion regarding autism and vaccines on the US show Good Morning America.

Yesterday the Age of Autism exhorted its members to mob a website that had created a Jenny vs Amanda poll (because popularity contests will definitely help autistic people). When the Pharyngula blog got wind of this PZ, the blog owner, asked his readers to vote too. The outcome?

Yikes.

The world view of the autism/vaccine zealots was shaken mightily yesterday. They’ve always imagined themselves as a large group with considerable power. Yesterday, they got squashed like a flea on a windscreen over something as meaningless as a celeb poll. Imagine how they must’ve felt to read some of the comments there. In fact, I’ve been tracking a lot of the gossip websites who’ve mentioned Jenny of late. She’s not popular outside her own crowd. Parents of autistic kids are catching on. Here’s a quote from someone I do not know and have never heard of before today commenting on Hollywood Today:

I am a single father of an autistic child and agree that Jenny Mcarthy is doing more harm than good. Why do we put more credibility in an actress / playboy bunny than doctors and other more credible sources.

And a mother of two autistic kids says on Ecorazzi:

As a mother with TWO autistic children, I find McCarthy’s ignorance appalling. Don’t we have enough difficulty in dealing with and understanding the Autism Spectrum without letting fad pseudo-science sway our families away from proper health care for our children?

These are not isolated examples I am very happy to report.

Yesterday the mercury militia – who think we’re just a few people compared to their ‘tens of thousands’ got a great big wet fish slap of reality.

Mother Warrior McCarthy is now complaining the US Presidential candidates are snubbing her. For goodness sake, why on earth did you ever think they would listen to you? You’re a D-list celeb who can’t even get her story straight on whether her son is recovered or not.

Anyway, she says:

I literally flew to go see MCCain, his team agreed to it (meeting), I was prepped and then all of a sudden his campaign manager said, ‘We’re ahead in the polls and this is a very, very touchy subject. Let’s not give this interview right now.

Wow, McCain employs the worst PR people in the world. They tell someone that they’re not going to interview them as they’re too controversial. How convenient for Jenny!

I’m thinking the conversation went something more like this:

JM: Hi, I’m Jenny McCarthy, can I speak to John McCain?

PR Dude: Sorry? You’re who?

JM: Jenny McCarthy, I’ve appeared in films such as ‘Scary Movie 3’ and…uh…

PR Dude: Whatever…why do you want to speak to the boss?

JM: About vaccines and autism! They’re poisoning our kids! Except mine is now recovered! No, wait – I have a book coming out, make that ‘recoverING’.

PR Dude: The country – no, the world – is in a national financial crisis and you want to talk to the boss about some quacky ideas never supported by science. Go away lady.

JM: But…but…I’m JENNY MCCARTHY…BULLSHIT!….BULLSHIT!!! (Where’s the camera?)

Now Jenny is desperate to get ahold of Obama:

MCCarthy is now desperately hoping Barack Obama, MCCain’s opponent in the race for the White House, agrees to champion her cause and address the autism versus vaccines issue.
She says, “We are trying (to contact him)… We have sent numerous (requests).

This is the same Barrack Obama who has said:

I am not for selective vaccination, I believe that it will bring back deadly diseases, like polio.

He might see you Jenny. Me might even pretend to listen. You might even get your picture taken with him. Better yet, he might pass on the opportunity to see you and then you can tell people how its a big conspiracy. You might even manage to squeeze another book out of it.

None of that will change reality though. The tide isn’t changing just yet but there’s been a few signs that it might be on its way.

Collecting IACC comments

2 Oct

Thanks to all who wrote to the IACC (or even thought about it!) about the Strategic Plan.

I’m trying to compile a list of responses. If you are OK with your comments being included, send them to sullivansjourney@gmail.com.. If you would like to remain anonymous, send your comments using a form that’s been set up here.

These responses will be shown to researchers to let them know that the greater autism community isn’t just about vaccines. It will show them that, yes, the greater autism community appreciates their support.

ScienceBlogs Book Club

1 Oct

I was very honoured to be asked to participate in the latest round of the ScienceBlogs Book Club.

ScienceBlogs Book Club

ScienceBlogs Book Club

The ScienceBlogs Book Club is exactly as it sounds – a discussion round table on a particular science related book. In this instance, the book in question is Dr Paul Offit’s Autism’s False Prophets.

This promises to be a very interesting discussion, mostly because numbered amongst the contributors is Dr. Offit himself. The full line up of contributors is:

Dr. Offit
Kristina
Orac
Professor Bob Park
and me.

A rather intimidating line up in which to ply my blogging wares. Everyone except me is either a Doctor or a Professor. It does feel a little like being made to sit outside the Headmasters office (again).

All joking aside, it really is an honour to be asked to blog alongside such heavy hitters (even if I do know two of the bloggers pretty well) and I hope to be making sure I am talking as much about autism and the future of autism research as I am vaccines. I think Dr. Offit – given his final chapter – will approve of that.

So – come across and participate. I’d like to see UK-ers over there too if possible (Rutty, I’m thinking of you 😉 ).

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