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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

—
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.

IACC conference call this week

21 Dec

Earlier this week the IACC met via conference call to finalize the Strategic Plan updates for 2012.  A 2-day workshop on the updates had to be cancelled due to hurricane Sandy.  Below are just a few fragments of discussions that occurred during the meeting.

Drafts of the updates can be found on the IACC’s website. And final versions will be posted as soon as they are completed.

The meeting started with a discussion of whether the IACC should issue a statement following the speculation that the shooter at Newtown Connecticut was autistic.  Such a statement has been prepared and will be released shortly.

One public comment noted the lack of support for a family trying to navigate the extra hurdles a family with disabilities faced following Sandy.  Some of the federal members noted that there are resources specifically focused on vulnerable populations. I am trying to get more specifics on that now.

Each question of the Plan was discussed and modified, sometimes with word smithing and sometimes with more extensive edits.  The question on treatments in particular had a great deal of discussion and edits were prepared real-time by OARC staff. There is a good team supporting IACC and it was impressive to see them continue to keep making notes on the discussion while preparing significant edits for approval during the call.

One question that came up during the discussions was that of immigrant populations and autism prevalence. There has been much discussion of the Somali-American community and autism and Idil Abdul spoke of the concerns of that community. Two studies had come out in then past year, one from Sweden and one from the Netherlands, suggesting higher autism prevalence for immigrant communities in those countries.  This highlights the fact that we don’t have autism prevalence data for most of the world.  To my knowledge there are a few from northern Africa, possibly none from sub-Saharan Africa and South America, little or none from south Asia.

The UK adult autism prevalence study was discussed and the fact that little is known about the adult population in the U.S..

Obviously much more was discussed in the whole day meeting.  Much of that can be found in the draft documents linked to above.

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By Matt Carey

Note: I serve as a public member to the IACC but my comments here and elsewhere are my own.

A multicenter blinded analysis indicates no association between chronic fatigue syndrome/myalgic encephalomyelitis and either xenotropic murine leukemia virus-related virus or polytropic murine leukemia virus

19 Dec

There was much discussion of the possible imprtance of the xenotropic murine leukemia virus-related virus (XMRV) in conditions such as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME), prostate cancer and autism. To be clear, the possibility of an autism association was made in the press, not in the research literature. For XMRV in general, there was much discussion in the press, in journals and online as it became clear over time that there were possible problems with the analyses that led to the main papers on the topic. The present study includes work by a multi-site team including the principle author of the original study linking XMRV with CFS/ME.

If one can boil a large, multi-site study result into one line, it would be this:

Here, the original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in blood of subjects with this disorder report that this association is not confirmed in a blinded analysis of samples from rigorously characterized subjects

I.e. there is no link between XMRV and CFS/ME.

Here is the abstract, and the full paper is online as well:

The disabling disorder known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been linked in two independent studies to infection with xenotropic murine leukemia virus-related virus (XMRV) and polytropic murine leukemia virus (pMLV). Although the associations were not confirmed in subsequent studies by other investigators, patients continue to question the consensus of the scientific community in rejecting the validity of the association. Here we report blinded analysis of peripheral blood from a rigorously characterized, geographically diverse population of 147 patients with CFS/ME and 146 healthy subjects by the investigators describing the original association. This analysis reveals no evidence of either XMRV or pMLV infection. IMPORTANCE Chronic fatigue syndrome/myalgic encephalomyelitis has an estimated prevalence of 42/10,000 in the United States, with annual direct medical costs of $7 billion. Here, the original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in blood of subjects with this disorder report that this association is not confirmed in a blinded analysis of samples from rigorously characterized subjects. The increasing frequency with which molecular methods are used for pathogen discovery poses new challenges to public health and support of science. It is imperative that strategies be developed to rapidly and coherently address discoveries so that they can be carried forward for translation to clinical medicine or abandoned to focus resource investment more productively. Our study provides a paradigm for pathogen dediscovery that may be helpful to others working in this field.

There was a lot of hope in the CFS/ME community that this was a breakthrough that could lead to a treatment. Unfortunately, the answers they seek are elsewhere.

As this is an autism-focused site, allow me to bring this back to autism. Unlike CFS/ME, there were no papers claiming an association between autism and XMRV. Instead there were public comments by the researcher involved and inflammatory journalism. In a search for XMRV autism the first article I get is: Is Autism Associated with A Viral Infection?, by David Kirby published at the Huffington Post. Mr. Kirby’s article was probably the first that pushed the (now failed) XMRV/autism hypothesis strongly into the public’s eye. Mr. Kirby was well known for some time previous for his work promoting the idea that vaccines cause autism. In specific, he was a major proponent of the idea that thimerosal in vaccines caused autism, having published a book Evidence of Harm: Mercury in Vaccines and the Autism Epidemic. For his Huffington Post article on XMRV, Mr. Kirby had some rather irresponsbile speculations from XMRV researcher Judy Mikovits and the founder of her reseach institute Annette Whittemore. From those quotes, Mr. Kirby proceeded to present the XMRV news story in his own way, as a series of speculative questions to create an impression built like a house of cards. The impression he left the reader with was that the XMRV story helped to explain a possible link between autism and vaccines. Following a quoted statement by Mikovits, Mr. Kirby wrote

So there you have it – a possible explanation of regressive autism in a significant number of cases associated with immune system deregulation triggered by vaccination.

Of course, much more work is needed to nail down the exact significance of such an association. For example, is the virus implicated in the cause of autism, or do children harbor the virus as a result of autism?

Notice that he doesn’t say, “much more work is needed to show that this is a real association“. No, rather than stress again that the hypothesis was poorly supported, he jumps to assuming the association and asking what significance it has. Classic David Kirby.

To be fair, the comments by Mikovits and the founder of the research center where she worked (Annette Whittemore) fed directly into his story. To say it again, those statements by Mikovits and Whittemore were irresponsible given the early stage this work was in. But even with those statements, Mr. Kirby had no justification to go into this speculative paragraph:

The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC

Again, we see the series-of-questions approach that is Mr. Kirby’s style. He isn’t saying immunization switches on XMRV viral expression (whatever he meant by “XMRV viral expression”. It sounds technical though). He’s posing it as a question. Notice how he brought in his mercury hypothesis, but as “heavy metals”. “Could the effect of heavy metals upon cytokine balances be at play?”. This is a great example of a sciency-sounding sentence that has no substance. Whoever was his editor at the Huffington Post should have shot that back with “do you even know what your talking about here?” But if the editor at the Huffington Post was doing his/her job, this article (and many more by Mr. Kirby) wouldn’t have been published there anyway. It is worth noting that by the time this article was written, the evidence was overwhelmingly against the idea that mercury in vaccines raised autism risk, but this was Mr. Kirby’s way of loosely tying his failed hypothesis to his then current speculation.

To pull the last sentence out of Mr. Kirby’s paragraph: “And why had the NIH said nothing about XMRV?”. Perhaps because they were more responsible than Mr. Kirby.

As a point of fact, XMRV is not prevalent in autistics (Lack of infection with XMRV or other MLV-related viruses in blood, post-mortem brains and paternal gametes of autistic individuals and PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.) In fact, as will be discussed below, it appears to not infect humans. Unfortunately, Mr. Kirby has not seen fit to post corrections. To the XMRV story or others.

The impression Mr. Kirby created with his story was strong. For example, he gathered 298 comments to his article, largely focused on vaccines. Here’s the last one, prominently at the top of the list:

David: As big as this autism story is, it is only one toe of the elephant. Here is another: There are no protections in place to prevent more XMRV from entering the nation’s blood supply. There is as of yet no XMRV screening test for donated blood. And — I just called my local Red Cross – there is as of yet nothing to prevent people diagnosed with CFS from donating blood. We are all at risk.

The elephant: How did our government let this potentially deadly retrovirus spread unchecked for twenty-five years? XMRV has, so far, now has been found to occur in people with autism, lymphoma, a severe form of prostate cancer, atypical MS, ME/CFS, and fibromyalgia. Twenty-three years ago the CDC was first informed of an outbreak of what we now know to be an XMRV-associated local epidemic. Eighteen years ago a study showed a retrovirus was associated with ME/CFS.

The band played on.

Yes, let’s spread fear about the blood supply, based on news reports, speculation and bad science.

Some of the authors of this present XMRV and CFS/ME study were also involved in a separate major multisite study on MMR and autism. I am referring to a study intended to replicate the key findings of some of Andrew Wakefield’s research. That study, by Mady Hornig, W. Ian Lipkin and others, Lack of association between measles virus vaccine and autism with enteropathy: a case-control study been re-interpreted by some as supporting Mr. Wakefield’s work. Some have gone so far as to claim that Mr. Lipkin’s team is signalling support for Mr. Wakefield’s work by citing it in other studies. It’s a stretch, a mind boggling stretch, and it’s wrong.

From the CFS/ME paper:

Sensitive molecular methods for microbial discovery and surveillance have enabled unique insights into biology and medicine. However, increased sensitivity for bona fide signal increases the risk that low-level contaminants may also be amplified. This can lead to spurious findings that pose challenges for public health and require an expensive and complex pathogen dediscovery process. Examples wherein authors of this paper have been engaged in this process include refutation of associations between enterovirus 71 and amyotrophic lateral sclerosis (24) and MMR vaccine and autism (25).

Lipkin and Hornig consider their work to be a “refutation” of the association between MMR and autism. But don’t take that one sentence from the paper as the only proof. Here’s an interveiw with Prof. Lipkin at Nature.

Had we done this when Andrew Wakefield [the former medical researcher who proposed that autism was caused by vaccines] came out with the initial report about the measles, mumps and rubella (MMR) vaccine and autism, and had something this definitive, there are many more children who would have been vaccinated against measles during the ten years it took us to finally complete the MMR–autism work. So I think it’s crucial that we don’t do things in a half-baked fashion, so we can test hypotheses and move on to new ones.

The interviewer even includes the MMR refutation as part of a question: “You have disproved the autism–MMR connection and other controversial disease links.”

In general, what can one say about XMRV? Aside from the drama involved in the story (which I did not discuss in detail in this article), and the questions about CFS/ME, autism, prostate cancer and more, what can we say? Prof. Lipkin says it very clearly in the interview:

We did not find any genetic sequences [of XMRV or related viruses] in the people with CFS or the controls. As far as we know, there is no human being that is infected with XMRV.

But there were papers (some now retracted) claiming some links between XMRV and human disease? What about those? Another quote pulled from the interview:

I think the explanation is that there was contamination. I don’t see any reason to invoke anything beyond that.

For this you have to give Judy Mikovits some credit. She worked with the team that was attempting to replicate her results. Contrast this with, say, Andrew Wakefield. A man whose hospital offered him the opportunity to replicate his own results, and he quit rather than accept that offer. A man who has repeatedly denied the science which has been clearly against his hypothesis. A man who denies the fact that he acted unethically in many ways in conducting his research. Judy Mikovits made some mistakes, both scientific and socially, but she seems to be part of the solution.

But that’s a bit of a sideshow. The main conclusion is that XMRV is not involved with autism. Or, apparently, any human disease.

With apologies for revisiting David Kirby and Andrew Wakefield.

—
By Matt Carey

People searching for answers: terms leading people to Left Brain/Right Brain articles about Newtown

18 Dec

Over the weekend I linked to many statements from groups and individuals in the autism communities about the Newtown shootings. It is then no surprise that many of the search terms used by people coming to this site would involve the shooting. Below is a list of many of the terms used on Sunday. I tried to edit out those which were not related to Newtown and leave spaces to show where they were removed. As you can see, many search terms involved the shooting. Many looking for answers such as “autism and violence” or “aspergers and violence” or “link between autism and murder”.

When a news article includes statements like “the shooter may have had autism”, the public is naturally going to assume this is relevant to the discussion. Autism does not preclude one from being violent or aggressive, but it also is not the root cause for someone who would perpetrate the atrocities in Connecticut. I am grateful that many media outlets are discussing this topic. CNN just released Groups: Autism not to blame for violence and CBS just released Asperger’s not likely to make people violent, experts emphasize.

The Columbia Journalism Review discusses the media speculation about autism in the Connecticut shootings in Lanza, autism, and violence. Including this paragraph:

Lack of solid confirmation that Lanza had autism (from his physician, for instance) hasn’t stopped some news outlets from offering misleading speculation that the disorder can foster violent behavior. The worst offender may have been The Telegraph in the UK. After echoing the unverified report about autism, the paper launched into irresponsible postulation about “sociopathy,” “criminal behavior,” and attempts “to escape feeling empty or emotionally void,” before dropping this disingenuously balanced gem:

Those on the autistic spectrum have a more limited emotional range and can miss social cues, making it more difficult for them to communicate and feel empathy with others. Difficulties communicating can cause frustration, which can spill over into aggression.

Several studies have found that violence and criminal behaviour are no more common in those diagnosed with autism than they are in the general population.

Here are terms that brought people to Left Brain/Right Brain on Sunday:

newtown ct
autism
newtown ct shooting
autism and violence
newtown connecticut
newtown autism
autism violence
how one mother with asperger syndrome grieves sandy hook elementary victims?

newtown shooter autism
newtown ct autism
aspergers and violence
connecticut shooting autism
newton ct
newtown shooting autism

autism speaks statement regarding the newtown shooting
autism newtown

autism advicates speak out about the connecticut tragedy
autism speaks response about allegations that ct. shooter was autistic
autism statement regarding the shooting in connecticut
autistic violence
autism groups on the ct killings

sandy hook asperger

asperger’s syndrome
newtown, ct
newtown, ct shooting
autism group statement on connecticut shooting

sandy hook letter to mom

autism newtown ct
statements from victims of the ctshooting
ct newtown
autism shooting

autism and mass murder
newtown shooting autistic
conneticut and autism
newtown shooting final report

newtown ct shooter autistic
connecticut killings in aspergers

asperger syndrome shooting
aspergers and violent behavior
newtown shooting aspergers
autism speaks article about shooting in ct

mental diagnosis of connecticut shooter
autism shooter

sandy hook autism
ct tragedy

autism killer
autistic people are violent
newtown, connecticut
autism not violent
brains letter from the newtown shooting

how the autistic community is dealing with conecticut tragedy

sandy hook and asperger
autism blog newtown
was newtown shooter autistic

autism shootings
hook elementary shooter aspergers
newtown ct recent
autism speaks response to newtown

autism speaks connecticut shooter

newtown, ct shooter and autism
autism sandy shooting
newtown connecticut brain

autism speaks response to newtown tragedy
autism manic depression
sandy hook shooter aspergers
latest news on newtown, ct shootings

european news coverage and reaction to newtown

asan statement
murder in newtown ct
http://www.sandyhook elementaryvictims
sympathy for the newtown
shootings autism
was newtown shooter autosm spectrum?
population of newtown ct
link between autism and murder
world news newtown ct

ct shooter
senators comment about autism and newtown shooting

autsuim statment newtown ct
latest info on ct shooting

autism newtown connecticut

connecticut gunman autism

shooter autistic
was newtown shooter aitistic
violence and autism
newtown shooter was bipolar
asan regarding ct shooting
newtown’s appeal
sandy hook shooter aspurger

And the list goes on.

Unfortunately, you can’t unring the bell. Not for this incident, and not for years of stigmatizing autism. Here are comments from the CBS story linked above:

First

“most people with Asperger’s can function normally in society”, this is a false statement! They cannot function normally! That is why they give the condition a name, as to differentiate them from the “normal” and accepted social behavioral. We have a large and growing population of people with these behavioral conditions that will hinder our public and social progress. I am afraid that we will continue to see these types of violent episodes, these conditions prevent the individual from using “reflective thought”, actions are sudden and instinctual, almost animal like. If you would like know more, go read a BOOK! don’t look it up on the internet, think for your self!

And

It is understandable that the myriad of disability groups would try to circle the wagon to blunt the obvious and glaring issue – these people cannot and should not be the priority of our lives as society. We spend too much time in school trying to mainstream these children at the detriment of the other students. Yes, there are cute examples that make great movie presentations and that make all of these children seem warm and fuzzy, but the fact remains that these children take up too much class time and resources that the non-disabled children need. We need to go back to the old situations where disabled children are confined to their own special classes and where the impact on regular students is minimized. While it is admirable to think that you can uplift a disabled child through mainstreaming, you are in fact downgrading the rest of the regular children and depriving the majority of necessary time in the classroom without the interruption that necessarily comes with a disabled child (I’m not talking physically disabled – I’m talking about the ones who are mentally and emotionally not there).My position is simply based on using all of your resources to make the most impact on the children who have the most to lose if denied services. The mentally/emotionally disabled should be contained within their own class setting with specialists and given every opportunity to progress without stealing precious class time from children who are able to handle more advanced coursework.

and

I happen to work in a company that employs a person with Aspergers. His actions and strange behaviors make the women at work very uncomfortable. He has serious problems with verbal communications and does things that are unusual to say the least. This results in people giving him wide berth in the work place. People are wondering when he’s going to behave in a violent manner. Supervision is afraid to address this problem and pretends it doesn’t exist. It’s like having a loaded cocked gun on the table ….just waiting for it to go off…….hoping you’re not the person that gets hurt.

While you can’t unring the bell, one can (to abuse the metaphor) try to keep it from being rung in the first place next time. Perhaps the next time there is a mass shooting in the U.S. (and, sadly, that is all too likely to happen), perhaps the media will be less likely to speculate or include “autism” in their discussion.
—
By Matt Carey

Calif. threatens to shut down Sonoma disability center amid patient abuse

17 Dec

California Watch has a series of stories recently discussing abuses and California’s developmental centers and failures by their in in-house law enforcement to properly investigate and prosecute those at fault.  In a news story out this past week, Sacramento’s TV channel 10 has a story:

Calif. threatens to shut down Sonoma disability center amid patient abuse

Here’s the introduction:

The state’s largest board-and-care center for the severely disabled lost its primary license to operate today, after repeatedly exposing patients to abuse and shoddy medical care.

State regulators cited the Sonoma Developmental Center, which houses more than 500 patients, for dozens of cases where patients were put at risk of injury or death. In issuing the citations, the state moved to shut down a major portion of the century-old institution.

The Sonoma Developmental Center is an institution for the developmentally disabled, mostly adults who are considered to have needs too great to be served in community placements. These would also include those most at risk of abuse.

The California Department of Developmental Services has an in-house police force. In the case of the Sonoma Developmental Center, multiple accusations of sexual abuse have been levied, but the CDDS’ police did not pursue those cases–to the point of failing to even take critical evidence (rape kits) on the victims. Control over the in=house police in Sonoma has been handed over to someone brought in from outside the service:

The department announced it was putting Frank Parrish, assistant chief of the California Highway Patrol, temporarily in charge of the Office of Protective Services’ unit at the Sonoma center. The highway patrol “is in the process of evaluating the issues to ensure the delivery of appropriate services,” the department said in a release.

Another recent story by the California Watch describes in more detail some of the problems at Sonoma: Police ignored, mishandled sex assaults reported by disabled. It is just mind boggling what appears to be happening based on the reports there.

Putting a couple different points together one ends up with this sad paradox: an individual with intellectual disability is considered incapable of giving consent for sex. However, the complaints must come from the individual and if the level of intellectual disability is too high, no one will accept their accusation. Unless someone is caught by evidence, nothing will happen. And the in-house police force isn’t taking evidence.

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By Matt Carey

Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting

17 Dec

Slate has picked up Emily Willingham’s article on the Newtown shootings, as Autism, Empathy, and Violence: Asperger’s Does Not Explain Connecticut Shooting. The URL says a lot:

http://www.slate.com/blogs/xx_factor/2012/12/17/asperger_s_and_newtown_school_shooting_autistic_does_not_mean_violent.html

Autistic does not mean violent.

It is very heartening to see large media outlets picking up on this message to counter speculation which started with the unconfirmed report that the shooter was autistic.

The article originally appeared as Autism, empathy, and violence: One of these things doesn’t belong here on Dr. Willingham’s blog EmilyWillinghamPhD.com and at the Thinking Person’s Guide to Autism.

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By Matt Carey

Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre

17 Dec

CBS New York has quotes Autism Rights Watch on the Newtown shootings. In Autism Rights Group: Asperger’s Does Not Explain Newtown School Massacre CBS cites the ARW press release. Including this paragraph:

“The search for answers should not be a search for a scapegoat. Autism is no excuse or explanation to evil. Being ‘autistic,’ ‘odd,’ ‘awkward,’ ‘camera shy,’ a ‘nerd’ and ‘uncomfortable with others’ does not cause a person to become a mass murderer,” the organization said in the release. “Autistic persons are more likely to be victims, rather than perpetrators of violence. Autism Rights Watch urges the public and the media outlets not to stigmatize the autistic persons and their families. They already are facing segregation and prejudices on a daily basis.”

The full press release can be found as ARW grieves for the families after Newtown, CT shooting

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By Matt Carey

AANE Statement on the tragedy in Newtown, CT

16 Dec

The Asperger’s Association of New England (AANE) has issued a statement: AANE Statement on the tragedy in Newtown, CT. The statement begins:

December 16, 2012 — At the Asperger’s Association of New England, we share the horror and sadness of people across the world. The shootings in Newtown, Connecticut, were a terrible and incomprehensible act of violence. We convey our deepest sympathy to the victims, their families and friends, and their community.

The AANE acknowledges the media speculation that the shooter had Asperger syndrome, including this statement:

Our overwhelming concern is for the families of the victims through their deep, enduring grief and devastation. We hope too that the conversation around Adam Lanza will be thoughtful and considerate of people who have Asperger syndrome or other forms of autism and their families

AANE is offering services of their staff:

Discussing this tragedy is challenging for families and very upsetting for children who have Asperger syndrome. Our staff is available to give advice or support relating to this issue during normal business hours: (617) 393-3824

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The full statement can be found at: AANE Statement on the tragedy in Newtown, CT

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By Matt Carey

My sympathies and apology to the good people of Newtown Connecticut

16 Dec

When I heard news of the murders in Newtown Connecticut I, like everyone, was shocked and saddened. Those are very weak words for the emotions I felt. I can offer sympathy, condolences and some understanding of what the good people of Newtown feel, but I can only imagine their grief at this time.

The autism communities rarely speak with one voice but this time there has been a unity of support and sympathy from all corners.

There has been a second message as well.  Not for the people of Newtown, but for the press reporting on this story. A message to treat autistics with fairness and accuracy. That whether the shooter was autistic or not, to keep in mind that autism is not the same as violent. That this young man in no way represents autism any more than he represents your community.

For intruding on your grief to interject that message, I apologize. I believe the individuals and groups who have stepped forward with these messages have done so with respect and only done so this early because of the need to head off a damaging theme we have seen emerge in the past from other shootings.

I have tried to highlight those messages here on this site. I have strived to do so with as much respect as I possible.

I wish you well in the time ahead and hope our support outweighs our intrusion.

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By Matt Carey

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