Mother who ‘smothered baby because she feared he was autistic was insane and had postpartum depression’

7 Dec

The story is on the Daily Mail’s website: Mother who ‘smothered baby because she feared he was autistic was insane and had postpartum depression’

A mother killed a six month old out of fear that the child was autistic. She says that she feared the child “would emotionally and financially ‘ruin’ her life”. She has been declared insane and will not be prosecuted.

A mother who allegedly smothered her six month old son because she feared he had autism will not face a murder charge.

Prosecutors said they doubt if they could prove Stephanie Rochester was sane at the time of the killing.

and

An arrest warrant for the 2010 killing revealed that Rochester feared her son had autism and tried to suffocate him with a plastic bag at their home in Superior, Colorado.

When that failed she used blankets to end his life.

The arrest warrant revealed Rochester had wanted to kill herself but did not want to ‘burden’ her husband with an autistic child.

Rochester told detectives that she thought having an autistic child would emotionally and financially ‘ruin’ her life.

Lower birth weight indicates higher risk of autistic traits in discordant twin pairs

7 Dec

Twin studies have shown that there is a strong genetic component to autism. When one “identical” twin has autism, the odds are high that the other twin does as well. But, what about those cases where only one twin has autism? The pair is “discordant”.

One of the major twin studies ongoing is the “Child and Adolescent Twin Study of Sweden” (CATSS). The study is not just an autism study, as their website notes:

The aim of this study is to investigate how both genetic and environmental effects influence health and behavior in children and adolescents. In this study parents to all Swedish twins turning 9 or 12 years are asked to complete a telephone interview concerning the health and behavior of their twins. The interview screens for several different health (e.g., asthma, allergies, diabetes) and behavior (e.g., attention, social interaction) problems. Some of the families will be followed up with additional questionnaires, as well as with genotyping and clinical interviews.

By studying discordant pairs, they are able to look for other risk factors. In this case, low birth weight. They found that low birth weight confers a significant risk for autism. Three times higher risk for a discordant autism pair for low birth weights.

They conclude ” a non-genetic influence associated with birth weight may contribute to the development of ASD”

Here is the abstract:

Lower birth weight indicates higher risk of autistic traits in discordant twin pairs.
Losh M, Esserman D, Anckarsäter H, Sullivan PF, Lichtenstein P.
Source

Roxelyn and Richard Pepper Department of Communication Sciences and Disorders, Northwestern University, Evanston, IL, USA.
Abstract
BACKGROUND:

Autism spectrum disorder (ASD) is a neurodevelopmental disorder of complex etiology. Although strong evidence supports the causal role of genetic factors, environmental risk factors have also been implicated. This study used a co-twin-control design to investigate low birth weight as a risk factor for ASD.

Method
We studied a population-based sample of 3715 same-sex twin pairs participating in the Child and Adolescent Twin Study of Sweden (CATSS). ASD was assessed using a structured parent interview for screening of ASD and related developmental disorders, based on DSM-IV criteria. Birth weight was obtained from medical birth records maintained by the Swedish Medical Birth Registry.

RESULTS:

Twins lower in birth weight in ASD-discordant twin pairs (n=34) were more than three times more likely to meet criteria for ASD than heavier twins [odds ratio (OR) 3.25]. Analyses of birth weight as a continuous risk factor showed a 13% reduction in risk of ASD for every 100 g increase in birth weight (n=78). Analysis of the effect of birth weight on ASD symptoms in the entire population (most of whom did not have ASD) showed a modest association. That is, for every 100 g increase in birth weight, a 2% decrease in severity of ASD indexed by scores on the Autism – Tics, attention-deficit hyperactivity disorder (AD/HD), and other Comorbidities (A-TAC) inventory would be expected in the sample as a whole.

CONCLUSIONS:

The data were consistent with the hypothesis that low birth weight confers risk to ASD. Thus, although genetic effects are of major importance, a non-genetic influence associated with birth weight may contribute to the development of ASD.

ASAN Symposium on Ethical, Legal and Social Implications of Autism Research

2 Dec

If I were local, I’d take the day off and go to this: ASAN Symposium on Ethical, Legal and Social Implications of Autism Research. The event is December 10th, and there is more seating available now. But you have to register (it is free):

The Autistic Self Advocacy Network, in conjunction with the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, the Harvard Law Project on Disability and the UNESCO Bioethics Chair American Unit, is proud to invite you, to join us on December 10th for a Symposium on Ethical, Legal and Social Implications of Autism Research at Harvard Law School. The free event will run from 9 AM to 3 PM at the Harvard Law School campus, Hauser Hall, Room 105.

Additional seating has become available. Please keep in mind that seating is still limited. Once these seats are taken, there will be no more available. If you are unable to get a seat or cannot make it to Massachusetts, the symposium will also be webcast live. Details to follow next week.

Topics covered will include prenatal testing, community participation in research methodologies, appropriate and inappropriate intervention goals and much more.

This symposium will serve a unique role in shedding light on ethics and values issues within the autism research community. By bringing together self-advocate and researcher participants, we hope this will serve as a starting point for meaningful dialogue between those conducting research on autism and the community of Autistic adults and youth. Confirmed participants include Administration on Developmental Disabilities Commissioner Sharon Lewis, ASAN President and IACC Public Member Ari Ne’eman, National Institute on Child Health and Human Developmental Director Alan Guttmacher, Harvard Law Professor Michael Stein, Paula Durbin-Westby, Emily Titon, Liz Pellicano, David Rose and many more.

This event is open to the general public without charge and is made possible by a grant from the Administration on Developmental Disabilities.
Get more information
Register Now!
I can’t make it
Please join us as we begin this exciting conversation. Space is limited, so please RSVP soon.

Sincerely,

The Autistic Self Advocacy Network

95 Disability Rights Groups Call on CMS to Issue HCBS Regulations

1 Dec

The announcement of this letter came to me through the Autistic Self Advocacy Network (ASAN).

“Dear Administrator Berwick:

On behalf of the National Disability Leadership Alliance (NDLA) and a wide variety of allied organizations supporting the mission and goals of the disability rights movement, we write to urge you to issue a Final Rule clarifying that Home and Community Based Services must not be delivered on the grounds of an institution, in a housing complex designed expressly around an individual’s diagnosis or disability, or in a setting that has the characteristics of an institution. The National Disability Leadership Alliance (NDLA) is a coalition of 14 leading national disability organizations led by individuals living with disabilities themselves and supported by grassroots constituencies living with disabilities in all states and the District of Columbia. The Alliance prides itself on serving as a leading voice for those with disabilities and actively supporting the expansion and quality of the Medicaid Home and Community Based Services (HCBS) program. It is in this spirit that we and our allies contact you to urge you to move swiftly to issue a Final Rule in line with CMS’ stated policy positions and the clear intent of the Medicaid HCBS program.

In April of this year, CMS published a Notice of Proposed Rulemaking (CMS-2296-P) clarifying the types of settings for which Medicaid Home and Community Based Services (HCBS) waiver funding could be utilized. The proposed regulation would have clarified that a HCBS setting “must be integrated in the community; must not be located in a building that is also a publicly or privately operated facility that provides institutional treatment or custodial care; must not be located in a building on the grounds of, or immediately adjacent to, a public institution; or, must not be a housing complex designed expressly around an individual’s diagnosis or disability, as determined by the Secretary…[and] must not have qualities of an institution, as determined by the Secretary. Such qualities may include regimented meal and sleep times, limitations on visitors, lack of privacy and other attributes that limit individual’s ability to engage freely in the community.”

We are writing to reiterate our support for CMS’s proposed definition of Home and Community Based Services outlined in CMS-2296-P, and to urge you to issue a Final Rule consistent with the principles laid out in your April NPRM. The integrity of the HCBS program is essential to protecting the rights of hundreds of thousands of Americans with disabilities who receive HCBS. Twenty-one years after the Americans with Disabilities Act (ADA) and twelve years after the Supreme Court’s Olmstead v. L.C. decision, it is imperative that CMS define what can and cannot be funded utilizing HCBS waiver dollars in specific and measurable terminology. Failure to do so would undercut efforts now being undertaken by both federal and state governments as well as advocates across the country to transition people with disabilities out of institutions and into the community in accordance with current law. Without a clear and sufficiently narrow definition of HCBS that delineates it from institutional settings, the effectiveness of deinstitutionalization efforts could be seriously hindered, leaving the door open to subjective interpretations by policymakers and the likelihood of wide-ranging and inconsistent applications of the rules. As such, we urge you to move swiftly to issue a Final Rule consistent with your April NPRM, defining appropriate and inappropriate usage of HCBS waiver dollars…”

Click below to read the full text of the letter and the names of the 95 signatory organizations.

Full NDLA Letter

NDLA Steering Committee Organizations

ADAPT
American Association of People with Disabilities
American Council of the Blind
Association of Programs for Rural Independent Living
Autistic Self Advocacy Network
Little People of America
National Association of the Deaf
National Coalition for Mental Health Recovery
National Council on Independent Living
National Federation of the Blind
Self Advocates Becoming Empowered
Not Dead Yet
United Spinal Association

Autism Speaks launches “Visual Supports” tool kit

1 Dec

Autism Speaks has come out with a “tool kit” on visual supports. It is a downloadable four-page pdf discussing visual supports including “if-then” boards and visual schedules. it is largely focused at parents and caregivers, as well as professionals. Such short “tool kits” can be, from my experience, valuable in that they give a short, directed view on a single subject. Often there is just too much information on too many subjects.

Here is the press release:

NEW YORK, N.Y. (December 1, 2011) – Autism Speaks, North America’s largest autism science and advocacy organization today released the Visual Supports and Autism Spectrum Disorder tool kit providing valuable guidance to parents, families and providers about how to utilize pictures, photographs and other visual supports to improve communication for children, adolescents and adults who struggle with understanding or using language. For children with autism spectrum disorder (ASD), not only can visual supports greatly facilitate routine communication and improve language comprehension, visual supports are also useful in explaining social interactions, daily transitions from one activity to another and can facilitate adaptation to new situations for children and adolescents with ASD. The guide is particularly helpful if a child or adolescent on the spectrum has difficulty understanding social cues, has trouble following spoken instructions, or is anxious or acts out when presented with surprising or unfamiliar situations. Families who use visual supports have reported decreases in challenging behaviors and increased compliance and independence.

“Expressive and receptive language skills are a common problem for children and adolescents on the autism spectrum,” says Dan Coury, M.D., medical director of Autism Speaks Autism Treatment Network (ATN). “We’ve found that non-verbal communication methods such as visual supports improve their communication skills, and this guide can be particularly helpful for families navigating their daily routines.”

Visual Supports and Autism Spectrum Disorder was developed by clinicians and families at the Vanderbilt ATN site to provide step-by-step instructions for parents, caregivers, teachers and other professionals who may be unfamiliar with visual supports or who would like to use them more effectively.

“The goal of the ‘Visual Supports’ tool kit is to empower families with effective strategies to create less stressful and smoother routine communication between a child with autism and their families or practitioners,” said Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D.

Visual supports can help children and adolescents with ASD who may not understand social cues as they interact with others in daily activities and may not grasp social expectations such as how to start a conversation or how to respond when others make social approaches. Children with ASD often find it difficult to understand and follow spoken instructions and may not be able to express well what they want or need. Visuals can help parents communicate what they expect and allow a child to express his or her wants and needs which in turn decreases frustration and may help decrease problem behaviors that result from difficulty communicating. Children with ASD are also often anxious or act out when their routines change or they are in unfamiliar situations ranging from a visit to a relative to undergoing a medical procedure. Visuals can help them understand what to expect and will happen next, and help to reduce anxiety allowing them to pay attention to important details and cope with a change in routine.

Visual Supports and Autism Spectrum Disorder is the newest in a series of ATN tool kits available for free download on the Autism Speaks website. It was prepared by the Vanderbilt Autism Treatment Network site at Vanderbilt University and the Vanderbilt Kennedy Treatment and Research Institute for Autism Spectrum Disorders (TRIAD) with support from Vanderbilt Kennedy Center for Excellence in Developmental Disabilities and the Autism Society of Middle Tennessee.

The ATN tool kits were inspired by the success of the popular Autism Speaks 100 Day Kit for newly-diagnosed families. Additional ATN tool kits developed to help parents and medical professionals who work with children and adolescents with ASD include Should My Child Take Medicine for Challenging Behavior? and Take the Work Out of Blood Work. More tool kits are in development. A list of these tool kits can be found at http://www.autismspeaks.org/atn.

Development of these tools is the product of on-going ATN efforts and is supported by Autism Speaks and in part by a grant from the U.S. Department of Health and Human Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital to serve as the Autism Intervention Research Network on Physical Health (AIR-P), a program made possible through the Combating Autism Act.

Autism Science Foundation “Recipe4Hope” Campaign Will Raise Funds for Pre- and Post-Doctoral Autism Research Fellowships

1 Dec

The Autism Science Foundation (ASF) has a fundraiser campaign starting today: Recipe4Hope. This is collecting money for the pre- and post-doctoral fellowships that ASF funds. (Note, those looking to apply for the grants can find information here). You can find out what sort of research these grants fund by checking the ASF website, here.

Here is their promotional video:

Here is the press release:

Autism Science Foundation “Recipe4Hope” Campaign Will Raise Funds for Pre- and Post-Doctoral
Autism Research Fellowships

New York, NY — [December 1, 2011] —The Autism Science Foundation today announced the launch of its special year-end fundraising campaign “Recipe4Hope” – www.recipe4hope.org. Every dollar donated to the campaign will go directly to fund pre- and post-doctoral autism research fellowships to expand our understanding about what causes autism and to develop better treatments.

“We know that autism research takes a lot of people, working together, to find the answers,” said Alison Singer, president of the Autism Science Foundation. “We need the discoveries of the brightest scientists. We need the knowledge and experience of parents. We need donations to fund this critical research. All these efforts snowball into lasting hope for children, teens and adults.”

The centerpiece of the campaign is a short video – Youtube.com/user/AutismScienceFdn – showcasing the Neiman family of Colorado building a snowman and playing together in the snow. This video illustrates the point that just like building a snowman, it takes all of us working together to fund critically needed autism research.

“I love playing in the snow with my family,” said mom Laura Neiman, whose son has autism. “I’m so thankful that my family was a part of this video. I hope that our participation will inspire others to give to this worthy cause.”

This fundraising campaign will take place exclusively online through December 31, and will employ social media outreach to connect with donors and supporters. Supporters are encouraged to share photos of snow angels and other outdoor activities on the nonprofit’s Facebook page and Twitter account. There is also a hashtag, #recipe4hope, to track the activity on social media sites. Supporters can also set-up their own fundraising pages to raise donations for the nonprofit. It’s easy and free to set-up a personal page and give the gift of hope this holiday season.

The Autism Science Foundation has funded just under half a million dollars in pre- and post-doctoral student research in the past two years. Ongoing donor support for this program through the Recipe4Hope campaign is critical. ASF’s pre- and post-doctoral grant program encourages bright, energetic young scientists to devote their careers to autism research. These research grants are already having a real impact on the field.

For more information about the Recipe4Hope campaign visit Recipe4hope.org. Follow the Autism Science Foundation on Twitter.com/autismsciencefd and “Like” it on Facebook at Facebook.com/autismsciencefd.

About the Autism Science Foundation

The Autism Science Foundation (ASF) is a 501(c)(3) public charity. Its mission is to support autism research by providing funding and assistance to scientists and organizations conducting, facilitating, publishing, and disseminating autism science. The foundation also provides information about autism to the general public and increases awareness of autism spectrum disorders and the needs of individuals and families affected by autism. To learn more visit www.autismsciencefoundation.org.

Note: I was a stakeholder travel grant awardee from ASF for the 2011 IMFAR conference.

Another example of a “leading scientist” on the supposed “vaccine safety” side

30 Nov

Earlier this year a meeting was held in Jamaica as the self-named “Vaccine Safety Conference”.

Part of the “mission” of the meeting was “The conference will bring together leading scientists whose research has raised concerns about aspects of vaccine safety”.

Aside from Andrew Wakefield, who were among the “leading scientists”? Lawrence Palevsky, MD, FAAP. Dr. Palevsky is a holistic practitioner. I.e., alternative medical practitioner. His talk? “Rethinking the germ theory”. Yes, germs are a theory. The idea that viruses and bacteria are the causes of diseases is something which, after a bachelor’s degree and an MD, deserves more than a moment’s question.

Why?

Acute symptoms, such as fever, vomiting, diarrhea, rash, cough, runny nose, mucus production and wheezing, are all important ways in which children discharge stored accumulations of wastes or toxins from their bodies. These toxins enter and are stored in their bodies from repeated exposures to in utero, air, food, water, skin, nervous system stress, and injected materials, that for whatever reason, don’t easily exit their bodies through the normal means of detoxification. These toxins are too irritating to children’s bodies and must be removed. Eventually, a critical level of the toxins is reached, and children get sick with symptoms to purge them. Children, therefore, must be allowed to be sick, in order for them to get well.

Emphasis added.

You see, it isn’t the germs that cause disease. It is the build up of toxins. Children develop symptoms in order to purge the toxins.

How does one treat illness? In specific, how does one deal with fevers? Well, since “Dr. Palevsky does not recommend the use of over-the-counter medicine for fever reduction. He does not believe these medicines are safe for human consumption…” one should embrace fevers as an opportunity to purge toxins. So, instead of using these over-the-counter drugs to alleviate discomfort (or to ward off a really high fever, or protect your seizure prone kid from going into status epliepticus…) one can

To help your child feel better with the symptoms of fever, use one drop of lavender or German chamomile essential oil rubbed undiluted on the tops of both ears, and in the space between the largest vertebrae in the base of their neck and the vertebrae below it.

If there’s evidence and a good theory for that, it isn’t cited by the good doctor.

But wait, there’s more. Put your kid to bed with wet socks on. No, I am not making this up:

Use the wet sock treatment after the warm bath: put a pair of wet, cool, cotton socks on your child’s feet, followed by a pair of dry, wool socks, and put your child to bed. Dr. Palevsky thanks his naturopathic physician colleagues for this smart therapeutic intervention. Many parents report how much it helps to improve their children’s symptoms of fever and upper respiratory issues.

Once again, if there is a hypothesis (much less evidence) for why sleeping with wet socks is therapeutic, it isn’t discussed on his website.

I’ll leave with this paragraph talking about his speaking engagements:

Attendees will also learn that the expression of these symptoms is not necessarily caused by bacteria and viruses. Instead, these symptoms and illnesses occur as a sign our children are healthy; that their bodies are working to bring to the surface, and cleanse, any accumulation of wastes from deep inside, perhaps even with the aid of bacteria and viruses. You will come to understand that we are harming children with the constant use of over-the-counter medications, antibiotics, drugs and vaccines that treat and suppress common and necessary childhood symptoms and illnesses.

Yes, we should welcome these helping viruses and bacteria in our quest to cleanse ourselves of toxins.

Boggles the mind.

Tracking cognitive changes in new-onset epilepsy: functional imaging challenges

29 Nov

Does the onset of epilepsy bring on a change in cognition? I’ve heard people, people who purport to know, state clearly yes…and clearly no.

A recent article poses the question of if such studies could be performed with the fairly recent advances in fMRI and ERPs.

Tracking cognitive changes in new-onset epilepsy: functional imaging challenges.

Functional imaging has potential for tracking changes in cognition during the onset and evolution of epilepsy. Although the concept of imaging such changes over time is an exciting new direction, feasibility remains an open question. The current article outlines a case example in which functional magnetic resonance imaging (fMRI) and event-related potentials (ERPs) were used to monitor memory changes before and after selective temporal lobe resection. From this example, three key methodologic challenges for new-onset epilepsy are identified and discussed. The first challenge relates to the interpretation of results in regions near epileptogenic tissue. We argue that this is best addressed by collecting information from multiple modalities to test for convergent evidence. The second challenge relates to optimizing the methods for sensitivity to detecting changes. In this case, enhanced imaging methods and a region-of-interest approach provide necessary focus. The third and final challenge relates to the practical difficulties of conducting research in new-onset epilepsy cases. We suggest that greater integration of imaging research within the clinical setting is needed.

The example given (monitoring changes after temporal lobe resection) is something quite distinct from new onset epilepsy, but the authors are presenting it as a starting point for what questions to ask and what problems might arise. “feasibility remains an open question” is a major understatement. How does one track an individual before onset of epilepsy or very soon after onset (the third challenge)? And, what regions should be tracked? It gets to be a very hairy problem. But I appreciate the proposal.

WPI v. Judy Mikovits: “The story keeps getting stranger”

28 Nov

A blog at Nature starts out succinctly: “The story keeps getting stranger.” In affidavits filed in the case of Judy Mikovits, the former Whittemore Peterson Institute (WPI) researcher who spearheaded the research which purported to link a mouse virus (XMRV) to chronic fatigue syndrome (CFS). She also publicly stated, based on unpublished results, that there could be a link between XMRV and autism.

After being terminated by WPI, the Institute filed a civil lawsuit claiming that Ms. Mikovits was involved in removal of intellectual property. This resulted in her being arrested and jailed. She has since been released on US$100,000 bail.

What is interesting in this is that more details have become public about what is alleged to have occurred in the removal of the lab notebooks and other items from WPI. These items were not in Ms. Mikovits’ possession when she was let go, as many assumed. Rather, she instructed a former colleague to remove them for her.

In World-known researcher set to be released on bail, the Ventura County Star reports:

Before a civil hearing on Tuesday in Nevada, they filed an affidavit by another researcher at the institute. He said he took notebooks containing about five years of research involving several scientists away from the facility at Mikovits’ request.

Nature has been kind enough to post the affidavits on their website (one and two).

The affidavits claim that Ms. Mikovits intended to use the information removed from WPI to take her research, including her grants, away from WPI. Where she intended to do this research is unclear as she apparently doesn’t have another position at this time.

Her grants were from the National Institutes of Health (NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME) which includes funding in 2009, 2010 and 2011, for $335,600, $311,316 and $302,866, respectively).

The Phoenix Rising blog has a more detailed description of the events.

It is a very, very strange story and it just keeps getting stranger.

Today’s the day: Autism Science Foundation Sometimes it Pays to be Small fundraiser

26 Nov

Here’s a chance to participate in a fundraiser at no net cost to yourself. The Autism Science Foundation is participating in American Express’ “Small Business Saturday” event.

Register your American Express card
https://sync.americanexpress.com/sbs2011

Donate $25 to ASF
http://www.autismsciencefoundation.org/about/donate

American Express will credit you back $25

Today’s the day!! It’s American Express Small Business Saturday. Go to http://www.autismsciencefoundation.org/about/donate and make an online donation to the Autism Science Foundation using your registered American Express Card and Amex will give you a $25 statement credit.   If you make a $25 donation today, it’s like Amex is making the donation for you!!  

Every dollar counts for autism research. Please donate today!
 -Alison

Here is the original announcement:

Sometimes it pays to be small.

The Autism Science Foundation will be participating in American Express’ Small Business Saturday. Please register your American express card at https://sync.americanexpress.com/sbs2011  Then, on Saturday November 26, make a $25 dollar online donation to ASF and you will receive a $25 credit on your Amex bill. This means that Amex is actually making the donation!!  Learn more about the event here: http://smallbusinesssaturday.com/

You must register your AMEX card asap to participate in this program and you must make your donation to ASF on Nov 26 using that registered amex card.  Also, each Amex card will only receive one $25 statement credit so if you use your card at other registered small businesses that day you will only receive the one credit.

We’ll send a reminder the morning of November 26.  Thanks in advance. Every dollar counts!!!

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