Post and Courier
December 27, 2014

Autism or lead poisoning?: One local mom and a new film, 'MisLEAD,' seek to raise the question

Posted: 04/01/2014 08:25 a.m.
Updated: 04/01/2014 08:51 a.m.


By David Quick

Lead poisoning has faded as a major health concern over the years, but one Daniel Island mother is joining a national effort to bring it back and to change the perception that the issue only pertains to low-income families.

Mindy Allen says her son, Haddon, was misdiagnosed with autism by the N.C. Children's Developmental Services Agency before age 2 after he exhibited disorder symptoms, such as making no eye contact, not wanting to be touched, having tantrums and severely delayed language skills.

For the Allens, who lived in Wilmington, N.C., where they had restored a historic home, life had been trying and traumatic since his birth.

"I was in pain because he was in pain," recalls Allen. "It was something I carried in my soul."

But when a speech therapist noticed that Haddon also suffered from eczema, watery eyes and other symptoms that don't typically accompany autism, the question was raised about allergies. The Allens were referred to the Center for Occupational and Environmental Medicine, located off of Ashley Phosphate in North Charleston.

Allen says the center's tissue samples came back with "off the charts" lead levels.

Historic home renovation

According to Allen, the center's medical director, Dr. Allan Lieberman, suspected that Haddon's issue dated back to when she was pregnant and supervising renovation of their 1925-era house in Wilmington, where workers demolished a wall that likely contained lead paint.

Lead paint exposure is a well-known problem in Charleston where there are so many houses, dating to pre-1978 years, when lead was banned from paint. The city of Charleston has worked to clean up urban homes where the lead paint is a problem for low-income residents.

Interestingly, the Allen's other children, a daughter who is two years older than Haddon and a daughter who is three years younger, have had no issues.

Haddon was put on a gluten- and casein-free diet, free of preservatives and additives, and about 20 supplements, including fish oil and magnesium. He later received other alternative therapies to remove heavy metals from his body from Lieberman's clinic. Lieberman did not respond to questions for this article.

Haddon's symptoms improved, and before starting kindergarten, his diagnosis of autism was reversed. Today, at age 11, Haddon is a healthy, athletic and socially engaged fifth-grader, making A's and B's, at Daniel Island Elementary School.

Mainstream response

Dr. Jane Charles, a developmental and behavioral pediatrician at the Medical University of South Carolina, could not comment on the specifics of the Allen case because she didn't know the details of it.

Charles adds that parents should know that the "gold standard" for an autism diagnosis is the "Autism Diagnostic Observation Schedule."

Charles says she is familiar with Lieberman's practice and warns that many alternative treatment plans are not based on scientific evidence, nor covered by insurance or Medicaid. And she recommends that a therapist observing behavior in patients be "blinded" to information about any changes in diet or supplementation to avoid bias.

A new mission

Allen vowed that she was going to help other parents and be a voice raising a new awareness of lead poisoning, particularly for families who are middle and upper income and live in historic homes along the U.S. coast from Savannah to Boston.

She founded a nonprofit, Special Family Resource, which basically provides resources she felt she and her husband didn't have when they were going through problems with Haddon.

"We really don't know how many kids are being misdiagnosed with disorders that actually have lead poisoning," says Allen.

MisLEAD?

Allen also is joining a campaign by Tamara Rubin, a Portland, Ore., mother of two children who have permanent disabilities from lead poisoning. Rubin is the producer and director of a new film, "MisLEAD: America's Secret Epidemic."

Rubin's children, now 11 and 9, were exposed when painters used a blow torch to remove exterior lead paint from her 1917 home in historic Portland.

"The home had been covered in aluminum siding and we wanted to restore it to its original glory, so we removed the siding and hired a contractor who said he was lead-safe certified, but we never asked to see the certification."

The 94-minute film follows 17 families with lead-poisoned children, who were diagnosed with disorders from attention-deficit disorder to autism, and takes the Centers for Disease Control and Prevention to task for being slow to further tighten restriction and safety levels.

"This film is about dispelling some of the myths about lead poisoning," says Rubin, noting that she has enlisted 130 mothers around the nation to help spread the word about the film and its message.

CDC changes

In 2012, the CDC released a report, "Low-Level Lead Exposure Harms Children: A Renewed Call of Primary Prevention," finding that "no safe blood lead level in children has been identified."

In a nutshell, the CDC says that lead causes permanent neurological damage to children, decreasing IQ and causing other serious health consequences.

Meanwhile, Rubin says the CDC needs to recommend that lead levels be tested in youth up to age 25 because "our brains develop until we're 25" and that white families who are middle and upper income need to take it as seriously as other groups considered more vulnerable.

A free screening of "MisLEAD" will be held at 7 p.m. April 23 at the Charleston Music Hall.

Rubin and her film are already getting attention, from meeting with the Environmental Protection Agency for four days in January, to an article expected to be published in "Parents" magazine in the June/July edition.

Despite lead paint being outlawed for residential purposes by the federal government more than 35 years ago, it is still present in millions of homes built prior to 1978.

$1.1 billion ruling

The effort falls on the heels of a Jan. 7 ruling, won by the Charleston-based Motley Rice Law Firm, in favor of the people of 10 California cities and counties for $1.15 billion in damages by three lead paint manufacturers, ConAgra Grocery Products Company, NL Industries, Inc., and The Sherwin-Williams Company.

Judge James P. Kleinberg of the Santa Clara Superior Court finalized a ruling saying that the companies created a public nuisance by concealing the dangers of lead, pursued a campaign against regulation of lead paint and actively promoted lead paint for use in homes, despite knowing that lead paint was highly toxic.

Motley Rice attorney Fidelma Fitzpatrick, who served as lead trial counsel, said in statement that the "abatement plan is a proactive solution to preventing lead poisoning waiting to happen due to existing paint, a positive example of prevention instead of treating the negative effects after the fact."

1 in 68

While Allen has joined forces in the anti-lead poisoning campaign, she still feels an affinity with the autism community and was among those last week taking note of a new estimate of children with autism last week.

As the health community recognizes World Autism Awareness Month this month and World Autism Awareness Day on Wednesday, many are still absorbing stunning news from the CDC raising the estimate of children with autism by 30 percent.

Last week, the CDC estimated that 1 in 68 children, or 14.7 per 1,000 8-year-olds, in multiple communities in the United States have been identified with autism spectrum disorder. In 2012, the CDC estimated it was 1 in 88 children.

The CDC noted that the criteria used to diagnose autism and the methods used to collect data have not changed.

Beside the estimate increase, the data also showed that boys are five times more likely to have autism than girls and that white children are more likely to be identified as having autism than black or Hispanic children.

The study found that almost half of children identified with autism have average or above average intellectual ability (an IQ above 85) compared to a third of children a decade ago.

"The most important thing for parents to do is to act early when there is a concern about a child's development," says Dr. Marshalyn Yeargin-Allsopp, chief of CDC's Developmental Disabilities Branch, in a release.

"If you have a concern about how your child plays, learns, speaks, acts or moves, take action. Don't wait."



Reach David Quick at 937-5516.