A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.

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By Matt Carey

Last chance to participate: UJA Adults with Autism Survey

29 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation have teamed up to sponsor the Adult with ASD Survey.

The survey closes on December 31, so time is short to participate.  You can take the survey here.

Here is a description of the effort from the ASF:

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN)—the world’s largest online autism research project—and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most.

Eligibility for Study Participation:

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

An 18-35 year old adult with ASD who is independent (that is, you are not under anyone’s legal guardianship)
The parent of an independent 18-35 year old adult with ASD (that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)
The legally authorized representative of a dependent 18-35 year old adult with ASD (For example, you may have legal guardianship or medical power of attorney for the adult with ASD)
Participation Details:

IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here:

https://www.ianresearch.org/pdfs/ian_consent.pdf

Principal Investigator: Dr. Paul A. Law

Contact Information: If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5

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By Matt Carey

SFARI looks back at 2012 autism research

29 Dec

SFARI, the Simons Foundation Autism Research Initiative, hosts one of the best autism research focused blogs there is. The Simons Foundation is the largest private funder of autism research.

SFARI has a list of 10 notable papers:
Notable papers of 2012

The list includes genetic, brain structure and treatment studies.

And a discussion of research events from 2012 I. Their director’s column:

Director’s column: 2012 in review

Which is a good discussion of highlighted results.

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By Matt Carey

San Diego mother pleads guilty in the drowning murder of her autistic son

29 Dec

Channel 10 news in San Diego reports Patricia Corby, woman accused in autistic son’s death, pleads guilty to murder charges, Corby faces sentence of 15 years to life.

The story begins

SAN DIEGO – A woman who drowned her 4-year-old autistic son in a bathtub, then drove his lifeless body to a police substation where she admitted the crime, pleaded guilty Thursday to second-degree murder.

Patricia Corby, 37, sobbed as she admitted killing her son, Daniel, last March 31.

The mother reportedly drowned her 4 year old son, attempted to drown herself and then drove to the police department to turn herself in.

As an aside: such events as these bother me a great deal. I have a great deal of difficulty discussing these stories and I resort to a rather clinical approach in my writing.

In a previous story it was reported that when she turned herself in:

…she told police that the boy was autistic and that she didn’t believe he would have a life or a future without her, so she decided to kill him, the prosecutor said.

Multiple sources are reporting that the the family had spent a large sum on therapy, implying that financial stress played into the decision to murder her son. This sort of inference is often a source of much controversy for, among other reasons, playing into the “autistic as burden” discussion.  Also statements about the family’s debt are taken by some as an attempt to partially justify the murder.

Ironically, in most murder cases a financial incentive is seen as adding guilt to the crime. However, when a parent murders a disabled child, the financial incentive seems to be used to reduce guilt.

Not mentioned is the discussion of finances is that the murder happened just a few months before California law changed making autism therapies much easier to obtain through insurance. The family was reported to have a history of employment problems, but the father was employed at the time of the murder and may have had medical benefits.

Comments in online stories range from “I would have taken the child in” to “don’t judge the mother unless you have walked in her shoes” to comments that seem to emanate from a modern-day Ebeneezer Scrooge.

As an aside, it is my personal opinion that the “you haven’t walked in his/her shoes” discussion point is beyond meaningless. Consider a term that is often discussed in the context of autism: empathy.

Empathy is the capacity to recognize feelings that are being experienced by another sentient or fictional being. Someone may need to have a certain amount of empathy before they are able to feel compassion.

Somehow we are not supposed to be capable of empathy where it applies to being critical of the mother’s actions, but we are supposed to be capable of empathy in considering offering the mother sympathy.

Another term that comes up often in autism discussions is “balance”. As in “that news story needed to give both sides to show ‘balance’ “. Usually this is in regards to some totally unscientific or disproven idea about autism. News stories about parents murdering their autistic children almost never give balance in regards to presenting any one of  the hundreds of thousands of stories where parents don’t murder their autistic children. Stories of how it is difficult, but does not warrant murder.  How the norm for those of us who have “walked in her shoes” is to keep walking, not to commit murder.  There is no balance in the form of autistic voices, except in the comments to no online stories. Comments that are often met with a “you haven’t walked in her shoes” reply.

Some question why so many parents actively shun the “pity politics” of autism, where real difficulties and challenges for our children and ourselves are colored by language of hopelessness and despair. Among the many excellent reasons I would include  the desire to not encourage the sort of despair that Patricia Corby felt.

Discussions of these types of events are very difficult for many reasons. Not the least of which is being respectful to the family. I wish the father and the family well in this difficult time and apologize for intruding in this tragedy.

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By Matt Carey

San Diego Family accuses caregivers of abuse

28 Dec

A family of an autistic young adult have accused caregivers of abuse after secretly recording video. In apparently pretrial hearings, the mother explains what she saw. The defense causes her of withholding information.

Preliminary hearing Thursday for 2 men accused of abusing autistic man

The video is, as you might imagine, painful to watch. So far the embed code doesn’t work, which might be for the best.

San Diego, California News Station – KFMB Channel 8 – cbs8.com

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By Matt Carey

What has become of Autism Science Digest?

26 Dec

Autism Science Digest was an effort by AutismOne to publish their take on autism science in a magazine format for a general audience. AutismOne is best known for their annual parent convention which focused largely on alternative medicine and vaccine causation.

It is about the time that AutismOne should be publishing their speaker list for next year’s conference so I checked their website. For those interested, the speaker list reads like most past lists.  Andrew Wakefield, the former researcher who promoted the idea that the MMR vaccine causes autism, will speak. So will Keri Rivera, who last year gathered much criticism for promoting forcing disabled children to ingest bleach or undergo bleach laced enemas. Interestingly, neither Mark nor David Geier are on the list. The Geiers have been frequent speakers at AutismOne and other venues favorable to their failed ideas about mercury in vaccines causing autism, as well as bizarre proposals that using drugs to shut down sex hormone production can be used to treat autism.  While not a regular at AutismOne, Luc Montagnier will not make a return visit.  Last year Dr. Montagnier brought the prestige of a Nobel Laureate to the convention. While his presence was touted strongly by supporters of AutismOne, Dr. Montagnier’s ideas were lacking the scientific rigor one might expect from a Nobel laureate (to put it mildly). Of course Jenny McCarthy returns, perhaps to tell us all once again that those who don’t follow her ideas wish for our children to remain disabled so we can bask in the sympathy of our acquaintances.

That all said, while perusing the AutismOne website I noted that the cover for their “Autism Science Digest” hadn’t changed since my last visit.  That was some time ago. The cover informs readers about the then upcoming 2012 AutismOne convention (last April), so my interest was piqued and I checked the page for the “Digest” and found this announcement: Autism Science Digest is temporarily unavailable.

One is left wondering how “temporary” temporary is in this case. Autism Science Digest was launched in August 2011 so the lifespan (should temporary=permanent) seems a bit short.

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By Matt Carey

Andrew Wakefield, who sparked the unjustified MMR controversy, wins the Golden Duck Lifetime Achievement Award for his contribution to quackery.

23 Dec

Andrew Wakefield, the person most responsible for propagating the now failed notion that the MMR vaccine causes autism, has been awarded the “Golden Duck” award for 2012 by the Good Thinking Society. The announcement begins:

Good Thinking launched its annual Golden Duck award for quackery in 2012, which seeks to recognize those who have supported or practiced pseudoscience in the most ludicrous, dangerous, irrational or irresponsible manner. It was decided that the inaugural award should be for lifetime achievement in any field, and the winner is Andrew Wakefield. His nomination statement can be found here…

One of the members of Winchester Skeptics in the Pub is quoted:

We were very keen to team up with the Good Thinking Society to help choose the winner of the inaugural Golden Duck.

“All candidates fared well in the voting, but it became clear that the one thing the good thinking people of Winchester really can’t stand is a doctor who blatantly abandons and abuses the scientific method.”

Further reading at The Guardian in Struck off MMR doctor handed award for ‘lifetime achievement in quackery’

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By Matt Carey

Alex Plank at CNN.com: Leave autism out of mass shootings

22 Dec

Alex Plank of wrong planet.com and Autism Rights Watch has an opinion piece at CNN.com: Leave autism out of mass shootings. The article begins:

(CNN) — After the horrific shooting in Newtown, Connecticut, a parade of self-appointed experts tried to insinuate that people with autism are prone to inexplicable acts of violence because they lack the ability for empathy and social connection. This is because the shooter, Adam Lanza, had been diagnosed with Asperger’s syndrome, a form of autism.

These speculations are needless, untrue and hurtful.

The full article, and over sixty comments so far, can be found at Leave autism out of mass shootings.

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By Matt Carey

Bloomberg: Autism Cures Promised by DNA Testers Belied by Regulators

22 Dec

Bloomberg has an article out on how genetic testing is being misused by alternative medical practitioners to justify their “treatments”. The article includes names which might be familiar to those who have followed the online discussions of autism and alt-med: Amy Yasko whose RNA therapy has been widely criticized for implausibility; James Laidler, a doctor who once worked with the DAN movement; and parent-writer Kim Wombles.

The article, Autism Cures Promised by DNA Testers Belied by Regulators begins:

April Hauge, a nurse practitioner in Weimar, California, spent $500 on a genetic test for her autistic son in 2009 that led to purchasing thousands of dollars in vitamins and supplements. Impressed with the results, she’s now selling advice on the approach to others.

There’s just one problem: the DNA tests and related treatments have scant backing from science and U.S. government officials. They’re untested, unproven, and may constitute “health fraud,” doctors, regulators and concerned parents said.

Yes, practitioners order genetic testing ($495 in one example) and then sell therapies supposedly based on these results which can cost the consumer thousands of dollars over the course of “treatment”. The tests are marketing, not science.  There is no real link between the tests, the condition and the treatment.

Discussion of “Dr. Amy’s” RNA therapies go back at least six years.  The idea that ingesting small doses of RNA could treat anything fails the biological plausibility test. Per the Photon in the Darkness blog:

This would be earth-shaking news…if it were true. The sad fact is that the cells in our body have a “thing” about stray RNA. There are enzymes – RNAse’s – that chew up RNA in order to prevent unauthorized “communication” from RNA viruses. These enzymes are in every cell and every body fluid.

There is enough RNAse in a fingerprint to degrade milligrams (1000 micrograms) of RNA in a few minutes. And it’s even worse if you try to ingest the RNA. There are high concentrations of RNAse in both saliva and pancreatic digestive enzymes, so it is highly unlikely that any RNA would survive to be absorbed.

Yes, one’s body is designed to attack and destroy foreign RNA. The full discussion The Alternate RNA Universe. Another can be found at Science Blogs as Autism & RNA????.

Government agencies are aware of the claims made and the lack of a logical link between the tests and the “treatments”.

“A lot of this skims on the edge of health fraud,” said Janet Woodcock, director of the Center for Drug Evaluation and Research at the U.S. Food and Drug Administration, referring to the use of DNA testing to recommend alternative therapies.

But for now, those offering the tests are allowed to “skim” health fraud laws. Laws which may change:

Following public hearings in July 2010, the agency developed guidance for regulating complex genetic and other tests sold by laboratories. The rules have been under review by the Obama administration since late 2011, he said. Until they are finalized, the agency is “somewhat hamstrung” in cracking down on companies that sell the tests, Gutierrez said.

The full article, Autism Cures Promised by DNA Testers Belied by Regulators is online at Blomberg.com

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By Matt Carey

IACC Press Release: Statement of the Interagency Autism Coordinating Committee (IACC) Related to the Sandy Hook Tragedy

21 Dec

The U.S. Interagency Autism Coordinating Commitee (IACC) has posted a Statement Related to the Sandy Hook Tragedy. I have copied the statement and the rest of that web page below:

Statement of the Interagency Autism Coordinating Committee (IACC) Related to the Sandy Hook Tragedy

The Interagency Autism Coordinating Committee, an independent Federal advisory committee that provides advice to the U.S. Department of Health and Human Services on activities related to autism spectrum disorder (ASD), has issued the following statement regarding the tragedy that took place at Sandy Hook Elementary School in Newtown, Connecticut on December 13, 2012:

Here is the statement:

The events of December 14 in Newtown, Connecticut shocked and saddened people worldwide. All of the members of the IACC express our deepest sympathy and support for the families and community affected by these terrible killings. Some news reports suggested the gunman had Asperger syndrome, an autism spectrum disorder (ASD). Because this tragic event has shaken so many, the IACC wants to ensure that continued speculation about the gunman’s diagnosis does not hurt others in the community. Our committee has collectively prepared this statement to address public concerns and questions about the implied association between autism and extreme violence directed at others.

There is no scientific evidence linking ASD with homicides or other violent crimes. In fact, studies of court records suggest that people with autism are less likely to engage in criminal behavior of any kind compared with the general population, and people with Asperger syndrome, specifically, are not convicted of crimes at higher rates than the general population (Ghaziuddin et al., 1991, Mouridsen et al., 2008, Mouridsen, 2012).[1, 2, 3]

Officials do not yet know whether the person associated with the school shooting in Newtown had been diagnosed with Asperger syndrome, another developmental or mental disorder or disability, or multiple disorders. We may never know what undiagnosed conditions or motivations he may have had. Whatever his diagnosis, this individual’s acts are not representative of people with developmental or mental disorders or disabilities, very few of whom are violent or dangerous towards others.

While a rare event, the impact of violence is a tragedy for all of those involved. These devastating events remind us of the importance of providing the best care and support for those challenged by developmental or mental disorders or disabilities. We do know that individuals with autism spectrum disorders, including Asperger syndrome, do better with the appropriate medical, educational, mental health and community supports in place. The IACC strongly supports the development and expansion of those services and believes that more research is needed to identify predictors of violence, and to develop appropriate prevention and treatment strategies.

References
1 Ghaziuddin M, et al. Brief Report: Violence in Asperger Syndrome, A Critique. J Autism Dev Disorders. 1991 Sep; 21(3): 349-54. [PMID 1938780]

2 Mouridsen SE, et al. Pervasive Developmental Disorders and Criminal Behavior: A Case Control Study. Int J Offender Ther Comp Criminol. 2008 Apr; 52 (2): 196. [PMID 17615427]

3 Mouridsen SE. Current status of research on autism spectrum disorders and offending. Research in Autism Spectrum Disorders. 2012 Jan-Mar; 6 (1): 79-86.

Resources
If you are concerned about violence or possible symptoms of mental illness in a family member or yourself, contact a health care provider or your local health department. You can also contact the treatment referral line at the Substance Abuse and Mental Health Services Administration (SAMHSA). Call 1-800-662-HELP (4357) or visit the online treatment locator.

Information about coping with stress after a traumatic event can be found at

•Substance Abuse and Mental Health Services Administration (SAMHSA) “Coping with Violence and Traumatic Events”

•National Institute of Mental Health (NIMH) “Children and Violence”
•Centers for Disease Control and Prevention (CDC) “Coping with Stress”
•American Academy of Pediatrics (AAP) “Talking to Children About Disasters”
•American Red Cross “Recovering Emotionally”
•American Red Cross “Helping Children Cope with Disaster” (PDF – 472 KB)
Other Resources
•American Psychological Association
•American Psychiatric Association
•American Academy of Child and Adolescent Psychiatry

Here is a statement about what the IACC is:

The Interagency Autism Coordinating Committee is an independent Federal advisory committee that provides advice to the U.S. Department of Health and Human Services on activities related to autism spectrum disorder (ASD). Members of the committee include representatives of Federal agencies involved in ASD research and services, as well as members of the public who are on the autism spectrum, parents of children with ASD, representatives of leading research, service and advocacy organizations, and other community stakeholders. The IACC develops and annually updates a Strategic Plan to guide ASD research efforts and publishes an annual Summary of Advances in ASD Research and the ASD Research Portfolio Analysis Report. More information about the membership and activities of the IACC is available at: http://iacc.hhs.gov/.

Please note that the IACC is an independent Federal advisory committee, and as such, the views expressed by the IACC do not represent the views of the U.S. Department of Health and Human Services or other Federal agencies and Departments.

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