Good news for parents of individuals with autism in Massachusetts and New Hampshire, both states have recently enacted autism insurance reform legislation. In New Hampshire, House Bill 569, Connor’s Law, was recently signed by NH Governor John Lynch. In Massachusetts, House Bill 4935 was signed into law by MA Governor Deval Patrick. This is good news for children with autism in both states!

Connor’s Law Information

NEW YORK, NY (July 27, 2010) — Autism Speaks joined New Hampshire families, the New Hampshire Council on Autism Spectrum Disorders, the Autism Society of New Hampshire, and other autism advocacy organizations on Friday in applauding Governor John Lynch for enacting House Bill 569, also known as Connor’s Law. This bill requires health insurance companies to provide coverage of evidence-based, medically necessary autism therapies, such as applied behavior analysis (ABA) therapy. HB 569 will go into effect on January 1, 2011.

Connor’s Law requires that a medical professional submit a treatment plan detailing the course of therapy. To be eligible for coverage, ABA therapy must be provided by a Board Certified Behavior Analyst or by someone working under the supervision of such a professional. The bill also includes a $36,000 annual cap on applied behavioral analysis (ABA) for children with autism spectrum disorders (ASD) birth to age 12, and $27,000 for youth 13 to 21. Insurance coverage for non ABA related therapies does not have any age limits or monetary caps.

Massachusetts Autism Insurance Information

NEW YORK, NY (August 4, 2010) — Autism Speaks joined Massachusetts families and other autism advocacy organizations in applauding Governor Deval Patrick yesterday for signing the House Bill 4935 (An Act Relative to Insurance Coverage for Autism Spectrum Disorder) requiring private health insurance plans to provide coverage of evidence-based, medically necessary autism therapies for people of all ages.

The bill, which was sponsored by Senate Majority Leader Frederick Berry (2nd Essex District), and State Representative L’Italien (18th Essex District), Vice Chair of Ways and Means, ends private insurance companies’ discrimination against individuals of all ages diagnosed with an autism spectrum disorder by requiring coverage of medically necessary autism treatments, including evidence-based behavioral health treatments.

I was browsing the web and came across a Letter to the Editor of the Okotoks Western Wheel, a publication based out of Okotoks, Alberta, Canada. In this Letter to the Editor, Child Neurologist Robert H. A. Haslam takes issue with an advertisement placed by practitioners of the Defeat Autism Now! biomedical protocol. In the event that the Letter to the Editor is only temporarily stored on the website, I am reproducing it here for you to view.

Dear Editor,

As a child neurologist, I take exception to the advertisement “Defeat Autism Now Practitioners’ Views on: Autism Spectrum Disorders and Childhood Behavioural Disorders” by neuropaths Poole and Hartmann on page 34, May 19 edition of the Western Wheel.

The ad claims that autism spectrum disorders can be caused by an increased intake of heavy metals, vaccinations, other toxic exposures and immune disorders. It states that treatment with a gluten-free diet may be helpful because of an intestinal deficiency in the ability to digest protein. “Nutritional supplementation” is advocated and detoxification may be used to treat heavy metal intoxication.

The above information is misleading and puts the family of an autistic child in a difficult position. A gluten-free diet is useful for celiac disease; there is no scientific proof that it helps people with autism. The MMR (measles, mumps and rubella) vaccine is given around one year of age, a time when autism is often first recognized, thus leading to the disproven belief that vaccinations cause autism. Studies in several countries have shown that when the vaccinations are discontinued the mortality from red measles rises. Some critics of vaccination have blamed the preservative thimerosal (containing mercury) for autism, but thimerosal has not been used in Canada for 10 years. British physician Wakefield claimed that immune disorders of the gut cause autism. However, careful review of the study showed that the science was flawed and the Journal Lancet retracted the article. Finally, there is no evidence of heavy metal poisoning, including lead poisoning, in autistic children and the treatment with “detoxification” is potentially harmful.

There is no question that autism is on the rise. As the naturopaths mention, current research is suggestive that there is a combined genetic and environmental cause. Autism frequently occurs more than once in the same family and is very common in identical twins. Scientists are discovering that many individuals with autism have subtle chromosome changes and when exposed to a yet unknown environmental agent, autism may result. However, there is no scientific evidence that any of the environmental factors described in the advertisement are responsible for autism.

Finally, the current practice for the management of autism spectrum disorders includes a multidisciplinary approach and the use of specific behavioural modification techniques especially geared to the many diverse manifestations of this disorder.

Robert H. A. Haslam C.M., M.D., FRCPC.

What are your thoughts on the letter?

The letter originally appeared here: Ad concerning Autism Spectrum Disorder misleading.

The Southwest Autism Research & Resource Center (SARRC) will be hosting a Lunch and Learn session on Tuesday, June 8, 2010 from noon until 1pm. The topic of this session is: Anxiety in Autism: Developments in Research & Practice with Raymond g. Romanczyk, Ph.D., BCBA-D from the Institute for Child Development, SUNY at Binghamton.

This presentation addresses recent intervention research and clinical practice for individuals with ASDs who display anxiety and anxiety-related clinical problems. Anxiety is a complex cluster of behaviors, cognitions, and physiological states that vary in proportion to one another from individual to individual. Discussions include the process of anxiety development and maintenance and the benefits and detriments of attempting to influence anxiety within the context of social and adaptive skill development. Cautions concerning well intentioned but poorly conceived therapy will also be highlighted.

BACB Type 2 CE offered, contact Pilar at (480) 603-3282 to register. The registration fee is $10/person and space is limited.

The following is a letter that Kirkman Labs sent to its distributors. Kirkman Labs is one of the most frequently used sources for supplements used in the biomedical treatment of autism spectrum disorders.

Dec 30, 2009

Dear Kirkman Distributor,

It has come to Kirkman’s attention that a raw material supplier has been supplying Kirkman with substandard quality material that is higher in antimony content than what would be considered acceptable to the special needs community. Raw material supplier are actually not required to test for antimony levels routinely, so this problem did not come to our attention until a physician using Kirkman products brought the issue to our attention. We immediately had our laboratory research the issue which they quickly isolated and linked it to a specific raw material.

We have stopped using this material and have located and purchased a quality replacement which we will begin using immediately.

We are asking that if you have any of the following products which utilized this material in your inventory, that you destroy the products and request credit or replacement with new lots when they become available. Call Kirkman customer service to make these requests. The products involved include all lots of the following products:

1. Zinc Liquid Product #387/8 and 387/16
2. Super Nu-Thera w/o A and D Product #447/454
3. DMAE 50 mg. Chewable Product # 489/90
4. Super Nu-Thera Powder-Orange Product # 410/454
5. B Complex Powder Pro Support Product # 399/7
6. TMG w/ Folinic and B-12 Powder Product #413/4 and 389/250
7. Chewable Vitamin C Tablets Product #389/100 and 389/250

Kirkman regrets the inconvenience associated with this issue, but Kirkman will not compromise our quality standards that we have stood for throughout our existence.

Sincerely,

Larry Newman
COO Technical and Regulatory Affairs

Evidently the stevia in these products is the source of the higher than desired level of antimony. This information was not originally posted on the Kirkman Labs website but it was making the rounds on autism message boards. The Kirkman Labs website is now updated with this important information.

Here is an excerpt from an article about the qualifying for, and receiving benefits from, the Arizona Division of Developmental Disabilities.

Autism Benefits Available in Arizona: Respite Care, Habilitation, Medicaid, and Therapy Covered by DDD

Benefits for children and adults with autism vary by state. In Arizona, individuals on the autism spectrum can take advantage of a variety of benefits including respite care, habilitation, and state-covered health insurance. State-provided services also cover several therapy options including speech and language therapy, occupational therapy, and physical therapy.

I recently heard a news report about a mother in California who is treating her autistic son, with the doctor’s blessing, with medicinal marijuana via brownies. Yes, pot-filled brownies have helped the child control his aggression as well as increase his appetite. Marijuana is known to relax a person and induce “the munchies” and the mother has seen a dramatic turn-around in her son’s condition. Medicinal marijuana is controversial, but its use in a juvenile is even more controversial.

I’m curious, what are your thoughts on the use of medicinal marijuana to treat autistic symptoms in a child?

The following is a press release from the Rochester General Health System. I try to present information on all sides of the mercury in vaccines/autism debate for informational purposes.

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Study Examines Mercury in Vaccines

ROCHESTER, N.Y., Oct. 30 /PRNewswire-USNewswire/ — The injectable, multi-dose H1N1 vaccine contains the mercury-based preservative thimerosol to reduce risks of bacterial contamination. The presence of thimerosol has once again raised concerns whether there are risks posed to children when the tiny amount of mercury contained in thimerosol is included in a vaccine. In a recent issue of the Journal of Pediatrics, however, a team of scientists supported by the National Institutes of Health reported findings that should alleviate those concerns. The researchers, led by author Michael E. Pichichero, MD, Director of the Rochester General Research Institute, Rochester General Hospital, Rochester, NY evaluated levels of mercury in the blood of the smallest children — prematurely born and low birth weight infants after they received a dose of a childhood vaccine containing thimerosol. They found the levels of mercury were exceedingly low.

The issue of administering vaccines containing mercury has been controversial because at very high levels mercury is known to cause organ damage (brain/kidneys). Consequently in 2001, as a precaution, at the prompting of the American Academy of Pediatrics, the Centers for Disease Control, and the Food and Drug Administration, the use of thimerosol in childhood vaccines was reduced or eliminated. However, after examining the evidence the Institute of Medicine issued an opinion that an association between thimerosol exposure and autism was not supported by the evidence. Nevertheless the contention that mercury in vaccines causes autism continues to be debated. The newly released multi-dose, injectable H1N1 Influenza vaccines contain the preservative thimerosol and thimerosol is 50% ethyl mercury, which has sparked a renewed debate on the safety of administering this new influenza vaccine.

The purpose of the study was to find out how much mercury from a vaccine containing thimerosol stays in a child’s body,” said Dr. Pichichero. “What we found was that blood mercury levels before vaccination were often detectable, even at a level similar to many children after the vaccination. By just breathing the air, mothers were passing to their unborn infants some slight amounts of mercury. The mothers did not eat fish that contains mercury, so in the United States and other countries where fish is consumed by pregnant women the levels of mercury would be presumably even higher. After the babies were given vaccines containing thimerosol, their blood levels of mercury did rise to very low levels and then fell rapidly to baseline levels by day ten after the vaccination.”

Since thimerosol has been largely removed from vaccines in the US since 2001, this study of 72 newborn infants was conducted at the Hospital Durand in Buenos Aires, Argentina. In Argentina, like many countries of the world, vaccines are purchased through sources supported by the World Health Organization and the WHO has rejected the notion that thimerosol in vaccines is unsafe. This is the third and final study by Dr. Pichichero and his colleagues that tested mercury levels following the injection of vaccines containing thimerosol. Previous studies were conducted on term newborns, and on 2-and 6-month old infants. In those studies, the researchers also found the mercury levels in the vaccinated children were very low and quickly returned to pre-vaccine levels, usually within three to seven days. In 1999, when the first concerns about thimerosol in vaccines was raised, it was presumed that the ethyl mercury in thimerosol would behave in the same manner as methyl mercury in fish after ingested. The three NIH-supported studies clearly refuted that idea.

Dr. Pichichero and colleagues concluded that with this latest data, it is time to recognize that the risk of exposure to thimerosol in vaccines is minimal to non-existent. “The H1N1 vaccine is safe and should be given to those at risk as recommended by the US Centers for Disease Control,” Dr. Pichichero said.

Groundbreaking Study by Dr. Robert Melillo and Dr. Gerry Leisman, Offers New Hope for Parents of Children with Autism Spectrum Disorders, ADHD and Dyslexia For The First Time, Researchers Propose a Universal Theory Of Autism; May Eventually Lead To Cure

NEW YORK, Oct. 7 /PRNewswire/ — Earlier today, promising new research findings that may help scientists and doctors better understand and treat Autism Spectrum Disorders, were released from a new study by Dr. Robert Melillo, a world-renowned neurologist, professor and author (Disconnected Kids, Penguin Books).

This possible medical breakthrough, follows on the heels of Monday’s harrowing announcement that two new government studies, including one by the Centers for Disease Control, estimate that 1 in every 100 American children has an autism based disorder. The new estimate would mean that about 673,000 American children have autism.

In the recently published study, Autistic Spectrum Disorders as Functional Disconnection Syndrome [Reviews in the Neurosciences, 2009, Freund Publishing], Dr. Robert Melillo and Dr. Gerry Leisman, offer, for the first time ever, a universal theory for understanding and treating Autism Spectrum Disorders, ADHD and Dyslexia. In the study, Dr. Melillo asserts that a disconnection between the left and right sides of the developing brain may lead to these kinds of neurological disorders.

“The problem known as a functional disconnection is a communication breakdown between large cortical networks in the developing brain. This leads to fewer connections between areas of the brain especially the two hemispheres. This imbalance explains the unevenness of skills and all of the other combination of symptoms we see in autism,” said Dr. Melillo.

Key study findings include:

— A possible treatment solution exists that has the potential of
correcting Autism, ADHD and Dyslexia permanently.
— How Functional Disconnection with reduced activity and coherence in
the right hemisphere would explain all of the symptoms of autistic
spectrum disorder as well as the observed increases in sympathetic
activation.
— Best way to address the symptoms of these disorders: improving brain
coordination through increasing right hemisphere activity to the level
that it becomes temporally coherent with the left hemisphere.
— The physical, immune, digestive, and biochemical issues, or the
sensory and motor issues, that previous papers do not address.

— An explanation of the neurological, cognitive, psychological, as well
as both the sensory and motor issues.

Hope abounds throughout the scientific community that this new theory might prove to be a significant breakthrough in understanding and treating one of the biggest social and medical issues of our time. President Barack Obama has identified autism as a national health priority and has earmarked Federal stimulus money for autism research, screening and treatment.

“For years, researchers have recognized that autism is a multimodal problem that affects multiple areas of the brain and multiple systems in the body. Although autistic children can vary in their combination of symptoms, there has also been the recognition that there seems to be a single unifying problem that may relate to other disorders like ADHD and Dyslexia,” said Dr. Melillo.

For the past 4 years Dr. Robert Melillo has served as an adjunct professor of functional neuroanatomy in a graduate doctoral program in neuropsychology at Touro College and Leeds Metropolitan University. He is also an associate professor of clinical neurology and childhood behavioral disorders with The Carrick Institute. Dr. Melillo is the executive director of the FR Carrick Research Institute, a University based research lab that focuses on translational research and development in the areas of neuroscience, brain development, ergonomics and rehabilitation. He is also the president of the Foundation for Cognitive Neuroscience.

Children’s Hospital Boston, with the Broad Institute and Harvard Medical School, has been awarded a Grand Opportunity grant from the National Institute of Mental Health as part of the federal stimulus package, to pursue “whole-genome” sequencing of patients with autism, using new technologies for rapid DNA sequencing to better understand autism’s causes. The roughly $4.5 million grant, part of the federal stimulus package, officially starts September 30. All genetic sequence data will be made publicly available.

Autism frequently runs in families, and is the most highly genetic of neuropsychiatric disorders. About a dozen specific genes and mutations have been discovered, including several by researchers at Children’s. Yet these genes still leave unexplained the vast majority of autism cases — about 85 percent, says Christopher A. Walsh, MD, PhD, chief of genetics at Children’s Hospital Boston, who is leading the new initiative with co-investigators Michael Greenberg, PhD, head of Neurobiology at Harvard Medical School, and a team at the Broad Institute of MIT and Harvard, led by Stacey Gabriel, PhD, and David Altshuler, MD, PhD.

The project will first focus on 85 Middle Eastern patients, previously studied in Walsh’s lab, whose parents share common ancestry and who have recessive forms of autism. These patients make good initial subjects for study because linkage analyses of their extended families have already narrowed the field of candidate mutations down to just 1 percent of their genome. Because autism is extremely variable genetically, rare large families with multiple affected individuals provide a good opportunity for mapping disease-causing genes, many of which also occur in autism patients generally.

As techniques are refined, Walsh and colleagues will begin to perform and interpret genetic sequence information from other groups of autism patients, including American families. “Within a year or two, we hope to develop technology and informatics techniques that should help to understand many kids with autism,” Walsh says.

The team will begin by analyzing the “exome” – the 2 percent of the genome that directly codes for proteins. For patients whose genetic cause remains a mystery, a second phase of the study will sequence and analyze the entire genome’s 3.2 billion base pairs (combinations of A, C, T and G) that make up our full complement of 20,000 to 25,000 genes. In this way, the researchers hope to discover noncoding portions of the genome — sometimes called “junk” DNA — that don’t make proteins but may contain critical switches that control gene activity.

The informatics part of the project, led by Timothy Yu, MD, PhD, in the Walsh Lab, will be the most important and challenging. With new machines, DNA sequencing has become relatively easy and cheap; what’s hard is interpreting the flood of information. The researchers will compare sequence information from their autism patients with that from normal controls, using data from the international “1000 Genomes Project,” allowing them to distinguish normal person-to-person genetic variations from variations that cause autism. “These new data should give us enormous power to interpret the findings in our autism patients, and figure out what’s the signal and what’s noise,” Walsh says. “Three million letters in the DNA sequence may differ between you and me — we need to figure out which changes are causing the disease.”

A separate part of the project, led by Greenberg, will look at gene activity in human neurons, focusing on genes that lie in chunks of DNA that were previously found to be deleted in the Middle Eastern families with autism. In 2008, Greenberg and Walsh reported that some autism mutations may affect “promoter” or “enhancer” sequences, bits of DNA that act as “on/off” switches controlling gene activity. Now, Greenberg’s lab will study living, active neurons to create a systematic map of these critical switches in the human genome, while the Children’s hospital team searches for the relationship between these switches and autism.

Because Grand Opportunity funding requires that the grant money be spent within 18 months, the project will move rapidly. The project’s ultimate goal is to relate different forms of clinical autism to variations in both DNA and gene activity, and to make this information available to all autism researchers.

The Nancy Lurie Marks Foundation, as well as the Simons Foundation, provided the initial seed money for Walsh’s team to research autism in the Middle Eastern families. Walsh is also supported by the Howard Hughes Medical Institute.

I’ve been on this autism journey for nearly three years now. Although my kids are older and have had “quirks” from birth, the first diagnosis wasn’t made until November 2006. For those that don’t know my history, I’m the mom of two children on the spectrum. My daughter was diagnosed with autistic disorder the day before her third birthday in 2006. My son was dx’d with Asperger’s Syndrome and PDD-NOS in the next year (difference of opinion). During that time, I’ve seen a lot of autism money sinks and when I read this article, I wondered if the LENA Language and Autism Screen (LAS) would be the next must-have (and expensive) device for parents of children with autism.

However, this is different. The LENA Language and Autism Screen (LAS) is designed to help parents screen their own children for symptoms of autism. Honestly, I’m a bit uncomfortable about this device. I feel that it is important for parents to understand the early signs of autism, as early intervention is proven to help dramatically in some cases, but I don’t feel that it is a parent’s place to screen and/or diagnose their own children.

It is imperative that if a parent is concerned, they see a licensed clinical psychologist, a developmental pediatrician, or contact their local school district or state early intervention office to request a thorough assessment. I understand the importance of giving parents the tools to recognize the early signs of autism, however I don’t feel that placing a $200 price tag on the tool is in the best interest of the child.

I’d love to hear your feedback on the device. Read the entire article on the ABC website and then head back here and leave me a comment (please!).