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Social Security to run a deficit this year

27 Mar

The U.S. social security system is predicted to run a deficit this year. The government will pay out more money in benefits than they will take in taxes.

Social Security has two main functions: a retirement system for the elderly and a support system for the disabled. Throughout my adult life two things have been ongoing. First, social security has been taking in extra money. Second, people have been predicting a time when the number of “baby boomers” retiring would put the system into a deficit sometime in the future. The problem arises that the extra money taken in hasn’t really been saved. It has been “borrowed” by the rest of the government.

So, again with the two things theme: for parents of disabled children, we have two things to look forward to. First, a retirement when our social security benefits will likely be dramatically reduced. Second, a retirement where we get to watch the social security support for our children be dramatically reduced.

The Atlantic Online has a story Social Security is Not in Crisis, and We Don’t Need to ‘Fix’ It. The crisis is years away, we don’t need to do anything now:

In any case, there is really no reason to do anything about Social Security this year, for at least three reasons. First, this deficit isn’t even projected to last five years. Second, Social Security is an entitlement, but it’s also a ‘stimulus.’ It is money paid to retired folks who are likely to spend because the old have a lower savings rate and many of their savings have been gutted by the downturn. Third, fixing Social Security will always be tough politics, but delaying, cutting or reforming benefits the same year you’ve announced half a trillion in Medicare cuts is downright crazy.

We are not in a crisis yet, you see. That’s because the current deficit is due to the bad economy. No, the real red ink won’t start to flow until 2016, according to Atlantic Online writer Derek Thompson.

Some of us are looking a bit farther down the road than 2016. Try 2080, for example. Somehow I’d like to think that my disabled kid will have support well after I am gone.

The Stupid, It Barks.

26 Mar

When I told a few friends about this link I said that words failed me in regard to the utter stupidity of these people. They still do so all I’ve done here is repeat the news article below:

Anxious parents might be breathing easier as research dismissing the purported link between childhood autism and vaccines continues to pile up.

But we’re not done hearing about the vaccine-autism connection just yet: Some U.K. pet owners are convinced that vaccines do more than just trigger autism in people — they’re adamant that shots do the same thing to canine companions.

Canine Health Concern (CHC), a U.K.-based nonprofit, is calling on the country’s government to investigate potential risks of vaccinations recommended by veterinarians. Among the alleged dangers? Doggie autism.

According to CHC founder Catherine O’Driscoll, vets who vaccinate their canine patients once a year are guilty of overdoing it, with potentially devastating consequences.

Dogs are vaccinated against a handful of illnesses, including Lyme disease, distemper and influenza. Most also receive routine booster shots into adulthood.

“There is a massive group delusion within the veterinary profession, with members’ eyes glazing over as they numb out to the known science and perform veterinary procedures that are unnecessary,” O’Driscoll told the U.K.’s Veterinary Times. “[Some] veterinary bodies around the world have called a halt to the practice of annual vaccination. Why is the U.K. lagging so far behind?”

But the British Small Animal Veterinary Association is adamant that all science points to the effectiveness of annual vaccines. Spokesperson Mark Johnston told Veterinary Times that he’s seen hundreds of animals die because they weren’t vaccinated, but only witnessed two deaths from side effects of an injection.

Despite dismissal from veterinary experts, O’Driscoll and company are garnering more attention from U.K. pet owners. O’Driscoll has published two books on the subject: “What Vets Don’t Tell You About Vaccines” and “Shock to the System.”

The Daily Mail covered the group’s autism-vaccine position in early March.

O’Driscoll founded the CHC in 1994, after her two golden retrievers — Oliver and Prudence — died unexpectedly. She blames commercial pet food and a vaccine overload for their demise.

CHC advocates a raw-meat diet for dogs and cats, along with “natural remedies” like garlic for parasite control and flaxseed oil combined with cottage cheese as a cancer cure for ailing canines.

In the United States, vaccination decisions are largely left up to pet owners and their vets. The American Veterinary Medical Association acknowledges that once-a-year vaccines can “increase the potential risk of post-vaccination adverse events.”

Among the potential risks listed by the association are transient infections, autoimmune disorders and even localized tumors. Autism didn’t make the cut.

It’s also not on the radar of the United Kingdom’s Veterinary Medicines Directorate. An agency spokesperson reported that more than 80 million doses of different vaccines have been administered to dogs since 1985, but it has received fewer than 7,000 reports of side effects, according to the Daily Mail.

The CHC’s chief complaint is that dogs who’ve been vaccinated often suffer from “dramatic changes in behavior.” The group claims that those personality changes are a symptom of autism.

Most veterinarians, however, have several other explanations. A dog’s sudden personality changes have been attributed to hypothyroidism, diabetes, brain tumors and, perhaps most likely, to hormonal fluctuations, as Fido copes with surging, preneutered teenage hormones.

Autistic girl assaulted by elementary school classmates

26 Mar

From CBS News: Three Florida Elementary Students Charged in Sexual Assault of Autistic Girl in School Bathroom.

Three elementary students were charged Wednesday in connection with a shocking alleged sexual assault March 3 on an 11-year-old classmate whose mother says suffers from a high functioning form of autism called Asperger’s

Two kids acted as lookouts. Add the school as accomplices, in my view:

The girl’s mother and her attorney told CBS affiliate KFOR that she wasn’t notified by Norland Elementary School officials about the incident for two days, but her mother could tell something was wrong.

Two days?!?

Here’s a comment that I wish didn’t have to be said:

The victim’s mother said her daughter is “very aware of what happened to her.”

Listen to parents…except when they say things you don’t want to hear

25 Mar

How many times do we hear, “Listen to the parents” on medical issues involving their autistic kids? Usually this comes from alternative medical groups who don’t have the science to back up the safety and efficacy of their therapies. What happens when a parent disagrees with these groups?

In Lawsuit against alternative medical practitioners Usman and Rossignal we discussed a father who has brought suit against prominent Defeat Autism Now (DAN) doctors Usman and Rossignol, and the laboratory Doctor’s Data.

Orac, at Respectful Insolence, has discussed this case as Suing DAN! practitioners for malpractice: It’s about time, where he uploaded the actual complaint.

In that complaint the father is alleging many things. High amongst them is the question of whether the “challenge” chelation tests are valid, These were used on his child and supposedly showed heavy metal poisoning. In a challenge chelation test, a chelator drug is given to a child before a urine test is taken. Chelators are designed to draw metals out of the body and allow them to be excreted through the urine (and other ways). There are no standardized references for metal contents in challenge testing. The American College of Medical Toxicology has made a very clear statement about challenge chelation testing. Here is their conclusion:

It is, therefore, the position of the American College of Medical Toxicology that post-challenge urinary metal testing has not been scientifically validated, has no demonstrated benefit, and may be harmful when applied in the assessment and treatment of patients in whom there is concern for metal poisoning.

Recall, challenge testing is noted in the lawsuit. From the section of claims against the Doctor’s Data (who are also defendents in the lawsuit):

The non-standardized method of testing that Defendant utilized on or about April 22, 2004, January 27, 2006, January 13, 2007, February 26, 2007, May 26, 2007, August 6, 2007, October 30, 2007, November 13, 2007, January 12, 2008, January 26, 2008, April 26, 2008, October 29, 2008, and March 27, 2009, wherein specimens were collected after the administration of a provoking agent and compared to unprovoked or unchallenged specimens was an improper method of determining whether A.J. had a potentially toxic level of heavy metals in his system

So, challenge chelation testing isn’t scientifically validated, has no benefit, but was used to justify certain therapies on this child. How did the Autism Research Institute respond to this? They blame the parent’s marital situation.

No, really, I’m not making this up. Rather than accept the complaints on their face and give this autism parent respect, they dismiss his multiple complaints as being…well, you read it:

Recent articles by ABC News and the Chicago Tribune on M.D.s who subscribe to the Defeat Autism Now! approach to treatment indicate the spread of misinformation and misunderstanding in recent months. The complaints about Drs. Usman and Rossignol resulted from a custody case– a painful situation for any family, one that can lead to accusations that must be sorted out in a court of law—not the media

Yes, it isn’t because the father is really annoyed that he was told challenge chelation testing is valid, or that his family spent lots of money on testing and on chelation. It couldn’t be that the father has not seen benefit from these therapies. It isn’t any of that. It is a custody battle issue. For the record, the defendants in the case do not include his wife.

ARI defends their approach in rather vague terms:

The Defeat Autism Now! approach to autism invites the medical community to be more responsive, inquisitive, and knowledgeable about treating these disorders.

The approach is not in itself a source of controversy, since many treatment interventions are commonly prescribed by traditional health professionals.

My view differs from the ARI statement. It would seem to this observer that the approach is the source of controversy. From their own website:

The best diagnostic test for toxic metal overload is the chelation challenge test. The chelation drug is administered, followed by a timed urine test to help assess the body’s burden of toxic elements.

This is in direct contradiction to the statement from the American College of Toxicologists. The ARI approach (including challenge testing) is a key point of the lawsuit. I am not able to reconcile this with the idea that the “approach itself a source of controversy”.

The great problem is rather that chronic, unaddressed illness plagues many, if not most, of the children and adults on the autism spectrum. These conditions, thoroughly documented in the scientific literature, often involve the gastrointestinal system and/or the immune system, but the medical establishment has been professionally insensible to what is a desperate situation in the expanding autism population.

Odd. If anyone outside of the alternative medical community ever makes a statement that the is driven by “desperation”, they are sure to get jumped on.

The focus of the Defeat Autism Now! approach is twofold: to provide patients with allergen-free nutritional support, to uphold and to repair the immune system as needed, and, if appropriate, to reduce the body burden of environmental toxins; to provide clinicians in-depth medical and scientific information, with Continuing Medical Education credits.

There is the mention of what is a main crux of the lawsuit, “body burden of environmental toxins”. That’s it. No mention of challenge testing. They mention that the approach includes reducing “the body burden of environmental toxins”, but doesn’t address the key question: when is this approach “appropriate”. How is that decided? The challenge testing approach has not, to my knowledge, ever been defended in court. This case is

The ARI press release doesn’t discuss the real questions here. Brushing this off as a custody issue is not doing anyone any good and is rather insulting to the parent bringing this suit forward and his child.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide

Clinical trial on Clinical and Immunological Investigations of Subtypes of Autism

24 Mar

The National Institutes of Health (NIH) have recently updated their webpage of featured clinical trials for autism. Many of the clinical trial recently discussed here at LeftBrainRightBrain are on that list. One that is on the featured list that I caught my eye is Clinical and Immunological Investigations of Subtypes of Autism. It is an old trial (started in 2006), but I thought it worth bringing up again.

The description is quoted below:

The purpose of this study is to learn more about autism and its subtypes. Autism is a developmental disorder in which children have problems with communication and social skills and display restricted interests and repetitive behaviors.

This study has several goals. One aim is to look at types of autism that are known, such as the regressive subtype, (where skills are lost). We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

We will look at several types of medical issues that may be related to autism, including immunologic problems. Children will be followed over the course of several years. We aim to capture medical problems that may be related to autism as they develop, and study outcomes in areas such as behavior and language, in order to explore known and new subtypes of autism.

Normally developing children (aged 1) with autism (age 1, and developmental delays other than autism (age 1), may be eligible for this study.

Depending on each child’s study group and age, participants may undergo the following tests and procedures:

Baseline Visit

* Medical and developmental history, physical examination, psychological, cognitive and medical tests to assess symptoms of autism or other developmental disorders, photographs of the child’s face, collection of hair, urine and baby teeth samples. If available, hair samples from the baby’s first haircut and from the biological mother’s hair are also collected.
* Overnight electroencephalogram (EEG): A special cap with electrodes is placed on the child’s head to measure brain waves (brain electrical activity) while the child sleeps in the hospital overnight. Healthy volunteers do not undergo this procedure.
* Magnetic resonance imaging (MRI) scan: The child stays in the scanner, lying still for 10 to 15 minutes at a time. Since it may be difficult for the child to lie still, the test may be scheduled for a time when the child is likely to be sleepy, or the child may be sedated.
* Lumbar puncture (for children in the autism). This test and the MRI may be done under sedation.

Follow-Up Visits

Follow-up visits are scheduled at different intervals, depending on study group, age and aspect of the study the child is enrolled in. The visits include a short interview session with the child’s caregiver and assessment of the child’s development and behavior. Some of the assessment measures used during the baseline examination are repeated, including symptoms ratings, behavioral tests and a blood test. For some children, the final visit will include repeats of the medical procedures.

The section that jumps out to my eye: We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

Yes, the NIH is looking at whether regression and immune functioning might be linked. As noted above, this study has been ongoing for some time: the trial was first listed in 2006. But, hey, I figure if I forgot about this one and found it interesting, others might be interested in this as well.

Autistic Teenager picks first two rounds of NCAA Tournament perfectly

24 Mar

March is the month for college basketball tournaments, “March Madness”. An autistic teen picked the winners in the first two rounds of the tournament according to the story: Autistic Teen Picks First Two NCAA Rounds Perfectly

http://www.nbcchicago.com/syndication?id=88949517&path=%2Fhome%2Ftop_stories

The odds of doing this randomly are quite high. Even experts have failed to predict the outcome so far:

ESPN estimates around 4.78 million played in their bracket challenge, but no one picked all the games correctly. The leader at ESPN’s bracket has already missed four games.

Spoiler alert–here’s the last couple paragraphs.

Alex picked Purdue to win the whole thing. That just happens to be his brother’s alma mater.

“They’re his favorite for that reason,” Diane said. Or maybe he knows something no one else does.

He’s a unique, stuffed bear

23 Mar

If you’ve watched Special Agent Oso (Disney Channel) as much as I, you recognized the title as part of the opening song to this cartoon. Special Agent Oso is a fairly recent addition to the Disney Channel lineup. When I was looking for links for my previous post on the Disney Channel, I hit on this story on the making of Special Agent Oso. The creator (Ford Riley) has an autistic kid (Quinn).

Shortly after Riley began developing the show, Quinn was diagnosed with autism. Riley drew from his son’s therapy to develop much of the core curriculum and structure of the show. His therapist would break down even the simplest activities into really small steps his son could handle, and Riley, in turn, broke down each episode’s task into three small steps young viewers could understand.

Here is the theme song, so you can have it stuck in your head too:

As you might guess from the title and the theme song, Oso is a James Bond take-off. They adapt Bond titles (e.g. “Live and let twirl”) complete with songs.

Special Agent Oso breaks his tasks (both his training missions and helping kids) into “three separate steps”. Luckily for you, I can’t find a good YouTube video of that song to give you an earworm on that too!

Disney Channel short on autism sibling experience: The Time I Realized My Brother was Different

23 Mar

Disney Channel has short segments that they play between shows. Sort of like commercial breaks, but they aren’t selling products. Well, other than the Disney brand! One set of these is called TTI for “The Time I…”. I just saw one today that somehow I missed before: The Time I Realized My Brother was Different”.

The segment is about a girl, Melody Igafo-Te’o, whose brother, Michael, is autistic.

Melody wrote a book, illustrated by Michael, which can be found at her website, mybrotherhasautism.net. (The link passes through to the Lulu store for the book). There is an e-book version of the book which is pretty cool. Apparently, this book is what sparked the Disney Channel’s interest in the story.

Here is a preview of the book:

http://www.lulu.com/viewer/embed/EmbeddablePreviewer.swf?version=20100323130016

This segment has been out since last November, so it is no surprise that others have already written about it. Two examples: Disability Scoop covered this already. As has Wright’s Law. More info on the story can be found on Jackson News (mlive.com).

Clinical trial of Donepezil for improving REM sleep in autistic children

23 Mar

A recent lecture I heard discussed how as many as 25% of autistic children get little or no REM (rapid eye movement) sleep. REM sleep is an important sleep phase and it is thought this could contribute to cognition and behavior problems in these children.

Anecdotally (and probably confirmed by studies is my guess) many autistic children have sleep problems. Children are reported to sleep fewer hours, have problems getting to sleep and wake up in the middle of the night. This new result, to me at least, is the first I’ve heard of reduction or lack in REM sleep.

In response to this finding, a clinical trial is underway to study the use of Donepezil (Aricept) with autistic children.

The clinical trial description is:

Detailed Description:

Autism spectrum disorders are defined by aberrant development of communication and socialization in the presence of restrictive and/or repetitive behaviors. Recent epidemiologic studies have documented an increase in the number of children identified with autism spectrum disorder over the past decade and according to some, the current numbers indicate a prevalence of 1 per 150 (CDC, MMWR 2007, Feb 9th release). Despite the pressing need to identify causal factors, etiology remains elusive. Furthermore, the heterogeneity of presentation complicates attempts to locate autism’s home in the brain.

Polysomnography is a reliable non-invasive tool that can be used to study the basic pathophysiological mechanisms of autism and other developmental and neuropsychiatric disabilities. Our preliminary data in young children with autism supports a growing body of literature demonstrating that sleep architecture is abnormal in this disorder. Previous studies in children with autism have identified various abnormalities in REM sleep including the following: immature organization, decreased quantity, abnormal twitches, undifferentiated sleep and REM sleep behavior disorder characterized by the absence of the muscle atonia that is normal in REM sleep and resulting in an acting out of dreams phenomenon (Tanguay et al ,.1976, Elia et al., 2000, Diomedi et al. 1999, and Thirumalai et al., 2002).

Our cohort spent an abnormally short time in the REM sleep stage of sleep compared to total sleep time (hereafter referred to as SPT REM% for REM sleep as a percent of sleep period time), and had a prolonged latency to REM sleep. The function of REM sleep and its relationship to cognition and overall neurological health is unknown and a subject of ongoing research. We know from animal studies that REM sleep increases after intensive learning sessions. These laboratory findings formed the basis for the hypothesis that this sleep stage is important for cognitive processes and that REM sleep may be useful as an indicator of brain plasticity. Current studies continue to add support for this idea. REM sleep has most recently been implicated in the process of human memory consolidation and several studies suggest that it is crucial to normal cognitive function and in the processing of emotion in memory systems. Acetylcholine (Ach) is one of the major neurotransmitters necessary for normal sleep transitions and abnormalities in Ach have been implicated in REM deficient sleep in other populations, most notably Alzheimer’s disease.

This proposal is for a 6 to 20 week, single arm, open-label study to evaluate the ability of donepezil hydrochloride to enhance REM sleep in children with autism spectrum disorder found to have a low SPT REM% (defined as below 2 standard deviations of observed normative data for age). All patients will come through the screening protocol 06-M-0065. Those who meet a research diagnosis of autism spectrum disorder and are ages 2 to 11 (through the tenth year) will be evaluated for inclusion/exclusion criteria for the study.

The primary outcome measure of this protocol is to increase the SPT REM% in children with autism such that their REM/non-REM ratios begin to approach normative values. Donepezil enhanced REM sleep has been achieved in young healthy adults, in elderly, healthy adults and in elderly, demented adults with Alzeheimer’s disease. Furthermore, the studies in Alzheimer disease by Mizuno et al showed a positive correlation between improved cognition and increased SPT REM %. If REM sleep is necessary for normal cognition, and its deficiency or absence can be remedied by pharmacologic intervention, then it may follow that improvement of REM sleep correlates with improved short and long term cognition in children with autism. Donepezil enhanced REM sleep has not been documented in children. Polysomnography provides a non-invasive tool to assess the effects of enhancing cholinergic tone on the abnormal sleep architecture we have documented in our pediatric, autistic population.

My guess is that some are thinking, “why look at this drug when many already use melatonin to help autistic children sleep”. After all, Aricept is an Alzheimer’s drug, with little study in children.

OK, I admit I did. So I did a quick search and found that melatonin has not been found to increase REM sleep.

Aside from my reservations about giving an Alzheimer’s drug to 2 year olds, this is the type of clinical trial I like to see. A clear question is presented that is supported by data. A clear outcome (increased REM sleep) is measurable. Secondary outcomes, improved cognition and behavior, are also measurable and defined.

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