Chelation Therapy Drug Treatment & Children with Autism

Medical News Today reports two small studies involving 65 children from ages 3 - 8 suggests that a drug approved by the FDA for treatment of lead poisoning may help children with autism who have a problem with heavy metal toxicity. These studies used a drug known as DMSA which was reported to increase the excretion of several toxic metals, including lead, with no adverse side effects.

These two studies also suggest that using DMSA might improve some of the symptoms of autism such as language, cognition, and sociability, although formal, randomized, double-blind, placebo-controlled studies are still needed.

News item.

Paul's comment: Small studies are useful to help suggest areas needed for appropriate follow-up trials. At the same time, much of what has plagued the autism community in the past are small, open studies or anecdotal references that send parents desperate to find that "magic bullet" trying yet one more treatment that may help a handful of children but are totally ineffective for the vast majority of those afflicted with autism. We stopped years ago desperately seeking the magic bullet for our son, but that decision has left me ever plagued by the thought "what if?"

STARTING SOCIAL SECURITY AT 62: A GREAT IDEA FOR SOME FAMILIES

Much has been written about the question “When should I start taking my social security benefits?” The pros and cons have been well discussed, but those discussions have left out one element that could make a critical difference in the answer to this very important question. That element is the little known social security benefit called “Disabled Adult Children,” a social security disability income program.

Social Security considers this to be a “child’s” benefit, because it is paid on a parent’s earnings record, not the child’s. To receive benefits under this program, the child need not ever have worked. The qualifications for these benefits are:

■ The adult child must have a disability recognized by social security and have been diagnosed before age 22.

■ The adult child must be at least 18 years old.

■ The adult child must be unmarried.

■ The adult child’s parent (sometimes step-parent or even grandparent or step-grandparent) must be deceased or receiving social security retirement or disability benefits.

Once qualified, even though the adult child must be “totally” disabled, he or she is allowed to earn up to $980 per month. (This figure changes from year-to-year.) Further, since this disability income payment will likely be higher than the current Supplemental Security Income benefit, the adult child should apply as soon as qualified to determine which benefit is higher.

Further, and perhaps more importantly, once the adult child has been receiving Social Security Disability Income benefits for 24 months, he or she qualifies for Medicare, no matter how old he or she is. Hypothetically, then, the adult child could be receiving both Medicaid and Medicare, as well as SSDI benefits, and still only be in his or her twenties.

Moreover, the parent only needs to apply and qualify for social security benefits. The parent still may be employed and even earning too much money to actually receive any social security cash benefit. (IRS calculates your retirement benefit based upon your age and earnings record. For example, assume an individual is entitled to $1,400 per month at age 62. If that individual earns approximately $50,000, he or she will not receive any cash benefit. [These figures are not exact but a rough approximation of a hypothetical situation.] If the individual does not receive any cash benefit prior to full retirement age, qualifying for social security at age 62 will have no negative affect on that individual’s full retirement age monthly cash benefit.)

It is, therefore, critical for all adults who have children with disabilities to understand the Disabled Adult Children benefit program of Social Security. Deciding to apply for social security benefits at age 62 seems to be a “no-brainer” for parents of children with disabilities who qualify for DAC benefits.

RESOURCES:

Disabled Adult Children Information from Social Security

Social Security Benefit Calculators

A former social security claims representative who wishes to remain anonymous. She frequently clashed with her supervisors by applying the law the way it was supposed to be applied.

© 2009 PAUL A. NIDICH

National Report Pegs Autism Prevalance at 1 in 91

Bethesda, MD (October 5, 2009) --

A national report released today in the journal Pediatrics reveals that 1 percent of U.S. children ages 3-17 have an autism spectrum disorder, an estimated prevalence of one in every 91children. This is a dramatic increase from the one in 150 prevalence rates currently reported.


“This national study charts a dramatic rise in the prevalence of autism in the United States and we applaud this administration’s recognition that autism is an urgent public health priority,” said Autism Society President and CEO Lee Grossman. “But families today are asking: how high must these prevalence rates rise before the nation responds? Significant resources must be directed toward screening and diagnosis, affordable interventions that treat the whole person and comprehensive education plans to foster lifelong skill development so that people with autism will have the ability to work and live independently.”


The report, entitled “Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder among Children in the US,” published in today’s issue of Pediatrics, was conducted by the Department of Health and Human Services National Survey of Children’s Health, using data from the Centers for Disease Control and Prevention. The report was conducted via a telephone
survey of over 78,000 parents, and determined a point prevalence of 110 per 10,000 respondents, roughly 1 percent of the population of children in the United States.


On a constituent call to discuss the report, the CDC reported that its initial analysis of the Autism and Developmental Delay Monitoring project data, due out later this fall, confirm the 1 percent figure. This report will also contain more data on age of diagnosis, groups affected, and access
to interventions.


The increasing numbers have long-term economic costs to the country, as autism is a chronic medical condition affecting people across the lifespan. “Lifespan services, particularly for adults, are typically inadequate and inappropriate,” Grossman stated. “This new data should be a call to action to the government to improve and increase services and supports first.”


The Autism Society has been working with Congress on several key bills, which have stalled. “The information in this new report highlights the pressing need for additional services, support and treatments for families affected by autism spectrum disorders,” said Senator Dick Durbin (D-IL). “My bill, the Autism Treatment Acceleration Act, will help children and adults with autism gain better access to coordinated services, improve training for professionals treating these disorders, and will relieve the financial burden on the millions of families struggling with this disability.”


This bill, if funded, would provide funding for applied research into effective interventions, the first ever demonstration grants on adult services, create an adult prevalence study, and fund family support and information networks.

“Autism affects millions of American families, and the cost of diagnosis, early intervention, and treatment imposes a heavy burden on most of them,” said Congressman Mike Doyle (D-PA), co-chair of the Congressional Autism Caucus. “This legislation, the Autism Treatment Acceleration Act of 2009, would improve the dissemination of information between autism researchers and service providers, improve training for professionals treating autism spectrum disorders, and mandate that health insurers cover the diagnosis and treatment of autism spectrum disorders. Enactment of this legislation would do a lot to help millions of American families.”

“The increase in the reported prevalence of autism across the nation testifies to the urgency of executing a comprehensive strategy in response to this public health emergency,” said Congressman Chris Smith (R-NJ), co-chair of the Congressional Autism Caucus. “For its part, Congress must ensure robust funding to support aggressive programs of research, education,
and services. Furthermore, Congress needs to enact additional legislation, such as the Autism Treatment Acceleration Act of 2009, that will establish the infrastructure and mechanisms for delivering appropriate services across the lifespan to individuals with autism and their families. We must look to maximize the reach and impact of our investments and activities by closely
coordinating government efforts with those of national advocacy organizations, such as the Autism Society.”

About Autism

Autism is a complex neurodevelopmental disability that typically appears during the first two years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for autism, but increased awareness and funding can help families today.

About the Autism Society

The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. We do this by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. For more information, visit www.autism-society.org.

Senate Committee Hears Testimony on Autism

From the August 7, 2009, edition of Autism Speaks e-Speaks Newsletter:

"U.S. Senator Tom Harkin (D-IA), chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, chaired a hearing Wednesday, August 5 on the state of autism research, treatments and interventions. Senator Harkin was joined by Senator Thad Cochran (R-MS), ranking member on the Senate Appropriations Committee, and Senator Arlen Specter (D-PA), member of the Senate Appropriations Committee. The Senators heard testimony from Tom Insel, M.D., director of the National Institute of Mental Health; Geraldine Dawson, Ph.D., chief science officer for Autism Speaks; and four parents of children with autism, Joshua Cobbs, chair of the Iowa Autism Council, Nicole Akins Boyd, vice chair of the Mississippi Autism Task Force, David Miller, board member of the Northern Virginia Community College, and Dana Halverson, co-founder of BEAT-Iowa. Click here to view the hearing on CSPAN.org."

Paul's Comment: I watched a repeat of the testimony on Tuesday night on C-SPAN. They all did a wonderful job presenting their positions on the needs of the autism community. At several points, there was some light friction between Dr. Insel and some of the others about NIMH's research agenda. It is well worth watching, but I would recommend having some tissues with you when you do.

However, while Chairperson Harkin and Ranking Republican Thad Cochran were very sympathetic and supportive, at one point they leaned towards each other and suggested that they might want to introduce a bill to end insurance discrimination against people on the autism spectrum. This was extremely disheartening, because they apparently didn't know (or remember) that the House Energy and Commerce Committee had adopted an amendment to this effect to President Obama's Health Care Reform effort last week and a similar effort in the Senate had already been effectively killed.

===

House Energy and Commerce Committee passed an autism insurance reform amendment to “America’s Affordable Health Choices Act of 2009,” H.R. 3200, sponsored by Rep. Mike Doyle (D-PA), Chairman of the Congressional Autism Research and Education Caucus in the House. Link to article.

Case of autistic Marine brings recruiting problems to the forefront

Here is an incredibly sad article from the Los Angeles Times about a young man with high-functioning autism who was recruited into the Marines. Not surprisingly, he didn't quite understand the rules, being yelled at constantly by his drill instructors, and all the other matters faced by a new recruit at boot camp. So, he simply decided to leave to go home (to a group home where he had been living when he signed up) but didn't make it out the gate. When his drill instructors finally learned he had autism, instead of having him evaluated for discharge, they simply eased up on him; so he could get through boot camp successfully.

He did get through the eleven-week program (somehow). He was then sent to Camp Pendleton for infantry training. Shortly thereafter, he was arrested for desertion and another crime. That was one year ago. That's right: He has been in the brig at Camp Pendleton for one year. He is also facing another charge, FRAUDULENT ENLISTMENT. The young man is under a conservatorship and cannot legally enter into a contract by himself. A motion to dismiss the charges against him on the ground that he didn't have the legal capacity to enlist was denied. Another hearing in this matter is scheduled for July 27th.

PLEASE pass on this post to everyone else you know who might want to help this young man. Also send it to your Representative and Senators.

READ MORE

Emergency Information Forms for First Responders and Families

Autism Speaks, an organization devoted to helping people with Autism Spectrum Disorders in many, many ways, has posted a Web Site for its Autism Safety Project, a collaborative project of families and first responders.  This project has provided pdf files where all families who have have people with disabilities in them can print out the files to have on hand in case of an emergency or even a simple trip to the doctor.  These forms can be found at this web site, http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm?sid=200546156.

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Ethical Wills and Legacy Letters

Ethical Wills and Legacy Letters may be particularly helpful to parents and siblings of children with special needs.  The following is an except from an article written by Attorney Andrew Hook of Portsmouth, Virginia and published on Attorney Robert Fleming's blog at http://gerilaw.typepad.com/elderlaw/

A recent Investment News article by Kathleen M. Rehl discussed the value of parents leaving “legacy letters’ for their children and grandchildren to share after the parents are gone.  The author described the letter her mother had written shortly before her death.  “Please know how important you are to me and how much I love you.  Life has been such a fascinating and interesting adventure with you, my family, being a big part of this journey.”  She wrote about her values, lessons life taught her, and her love for each member of the family.  Ms. Rehl says that “[w]hat she experienced during her 84 years of life was much more valuable than the material stuff she left behind.”

Moe information about Ethical Wills can be found at  www.ethicalwill.com.  The website includes samples of ethical wills, written by people at various stages of their lives.

Ms. Rehl says that writing a legacy letter not only helps loved ones by communicating the meaning of the author’s life, but is a gift for the writer.  “In reflecting upon the past and recording thoughts on paper, writers learn about themselves, ponder what they stand for and have the opportunity to articulate that which is closest to their hearts.”  People can write their initial letter and keep it updated each year.

View Original Article

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Comprehensive Autism Legislation Introduced in House of Representatives

The Autism Society of American reports that major legislation regarding autism was introduced into the House of Representatives last week as a companion to a bill introduced into the Senate in April.

"The Autism Society applauds this comprehensive autism legislation focused around enhancing the quality of life for individuals on the autism spectrum and their families.

The Autism Society especially applauds the inclusion of support services for adults on the autism spectrum in this bill. Currently, the federal government provides for educational services until age 21; however, autism is a lifelong disorder, and when the school bus stops coming, individuals and families are often left to fend for themselves. ATAA creates a demonstration project to provide an array of services to adults with autism spectrum disorders, including: postsecondary education; vocational and self-advocacy skills; employment; residential services, supports and housing; nutrition, health and wellness; recreational and social activities; and transportation and personal safety.

The legislation also would provide for the establishment of a national network in order to strengthen linkages between research and service initiatives at the federal, regional, state and local levels, and facilitate the translation of research on autism into services and treatments that will improve the quality of life for individuals with autism and their families. A national data repository would be created to share emerging data, findings and treatment models.

Other key aspects of the bill include:

* the establishment of a national training initiative on autism and a technical assistance center to develop and expand interdisciplinary training and continuing education on autism spectrum disorders; and
* a requirement that health insurers cover the diagnosis and treatment of autism spectrum disorders, including Applied Behavior Analysis therapy, assistive communication devices and other effective treatments.

The Autism Society needs your help in order to help pass this critical legislation. Please contact your U.S. Representative and ask him or her to co-sponsor the bill. We’ve composed an e-mail describing all the vital aspects of this bill but it will be especially effective if you add your own story describing how ATAA would help you and your family.

The time to act is now. Please support this important issue today, and urge your friends to take action as well. Together, we can improve the quality of live for individuals with autism across the lifespan."