DV Journal

Shannon Mitchell tells us of her years-long journey in fighting with the Philadelphia School District for a Free and Appropriate Public Education for her children. She reports procuring the services of an attorney with other parents in her district and winning “out-of-district placement” for her child back in the spring. Yet, her pleas to the district to send referral paperwork for this placement, and even calls to her attorney’s office, are met with silence. The fact that the new school year starts next month is not lost on her. What is she to do?

For the Mitchell family, rather than enjoy their summer and find time to relax, Shannon finds herself making call after call, continuing the fight for her child for next school year despite a favorable, attorney-facilitated agreement.

Every day, Shannon rises at 4:30 a.m. to particularly care for Brianna, a first grader who is very high on the autism spectrum. Due to Brianna’s behaviors, Shannon admits she can be challenging. But Shannon has found methods to reach Brianna; to get her to sit, listen, learn, and even dance with her older sister, Morgan. Despite Shannon’s pleas of the school environment to follow her successful lead, troubling times while at school are met with placing Brianna in the center of the room with toys. As a matter of fact, the behavioral therapist who has observed Brianna in the school environment reports she simply plays with toys for much of the school day.

Out of district placement may not even be necessary if the Philadelphia School District had simply allowed the Mitchell children to attend John Hancock, a blue-ribbon district school for children on the spectrum, for which they are not zoned. Rather than allow cross-district enrollment, the Mitchell family was forced to enroll Brianna in Thomas Holme instead. Her children are reported, by behavioral and speech therapists, to be behind in many areas – suspected to be due to lack of FAPE.

The Mitchell family has repeatedly requested one-on-one attention but has been turned down.  They even asked to provide it via their own private insurance, at their expense for Brianna, and again their request has been denied.

Last summer, with the help of one of their many specialty doctors, Brianna was provided with one-on-one assistance at home.  Two therapists came to the house, Monday through Thursday, to work with Brianna.  She was able to say 17 words (up from 5 during the school year) and was partially potty trained, marking significant progress made at home. But again, Shannon was frustrated that the school district environment refused to follow her lead.

This all came to a head with the Mitchell family and other parents in the district formally procuring the services of an attorney – the result of which granted out of district placement for Brianna. While this may seem like a “win” for the family, it has been met with almost complete silence from the school district in terms of referral paperwork and planning.

Shannon has begged for help, saying she is waiting on the district to finalize and support Brianna’s needs, asking what she can do to speed it up, and begging for them to “support her needs…she deserves an education…please I just want her to get help.” The response three weeks later? “Thank you for returning my call. As stated, I will send your concern over to the OOD team. In service.” And this is after attorney representation and favorable result. Can you imagine the story of those families who need to give up, who cannot afford an attorney, or no attorney will take their case?

The Mitchell family contacted the Office for Dispute Resolution at the Pennsylvania Department of Education back on June 17. According to the PDE’s “Special Education Compliance” page, “The Pennsylvania Department of Education (PDE) is responsible for developing and maintaining a system that ensures that each child with a disability receives a free appropriate public education (FAPE) and that each family has access to a system of procedural safeguards.”

Shannon was told by a PDE Policy Advisor via email that an advisor in her area would “make contact” to discuss concerns.  No one has reached out.  What good is a Consult Line that is supposed to help parents, or a Dispute Resolution process that does not follow up?

The Mitchell family is simply trying to survive while caring for their three children. Shannon rises at 4:30 every morning to care for her most profoundly affected child and frequently doesn’t get to bed until almost midnight. Her husband’s salary as a police office, combined with the children’s needs, don’t allow them to own their own home, and they live with Shannon’s parents. They have jumped through every hoop. They have fought the best way they know how – and “won” – months ago. Yet, are still begging for the district to do their part.

Once this challenge on behalf of Brianna is resolved, Shannon’s attention will then turn to her 4th grade son, Caleb, who is also on the spectrum.  How long will it take for the district to provide him with the services and placement that he needs, and at what price – his education or speech skills?  Will he slip further behind? What are his prospects as he enters middle school?

Parents (rightly or not) trust schools to help them navigate the complicated process in Special Education – the Individualized Education Plan meetings, the therapy appointments, the back-and-forth negotiations, what the school says it “can” or “can’t” do on behalf of the child – the issues are endless. And while the Mitchell family is well-versed in Special Education policy, they had to seek legal help for the desired end-result, about which they are still waiting for the district to do their part months later.

As Shannon said in her testimony to the GOP Policy Committee last September, “My mom always says it takes a village to raise a child. Well, it takes more than that when a child is on the spectrum.”

The system is broken. These families are out on their own. Children are being left behind. Pennsylvania must do far better for these children and families.

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Karleen DeGroodt of Huntington Beach, Calif., was an ICU nurse when she was pregnant with her son Devyn. Working 12 to 16 hours a day, most of it on her feet, DeGroodt took acetaminophen several times a week for her aches and pains.

After all, it was one of the few pain meds recommended by her OB/GYN.

“I was handed a goodie bag and it had vitamins samples, snack bars, and a list of medications I could take, which included Tylenol, which is safe to use,” DeGroodt said.

Devyn was diagnosed with autism before his third birthday. “He was a very happy baby, but there just wasn’t that eye contact connection,” DeGroodt said.

Today, 14-year-old Devyn is nonverbal and relies on an iPad for communicating. And his mother wonders if the acetaminophen was the cause. It is a question more parents and healthcare professionals are asking: Is there a link between acetaminophen usage and an increase in autism spectrum disorder?

For Dr. Roberta Ness, a women’s health expert working with AutismJustice.com and the former Dean of the University of Texas School of Public Health, the answer is clear.

“I am absolutely convinced that it’s not only a link, but it’s a cause,” Ness said.

Ness points to a growing number of studies that indicate a link between the two.

In 2015, the FDA released a drug safety communication calling on additional research into acetaminophen usage during pregnancy.

A 2019 Johns Hopkins study funded by the National Institutes of Health concluded the results support earlier studies linking acetaminophen exposure in the womb with ADHD and ASD and called for additional research.

And now Nature’s Review Endocrinology has published a consensus of 91 scientists, clinicians, and public health professionals calling for 2015 FDA Drug Safety Communications recommendations to be updated in 2021.

The study cites a disturbing increase in the number of children with cognitive learning and behavioral problems.

The overall rate of developmental disabilities between 2009–2011 and 2015–2017 increased by 9.5 percent, according to the US National Health Interview Survey.

Dr. Ness, who served as an expert witness in the talc baby powder case against Johnson and Johnson, says that since 2015 an estimated 60,000 children have been born with autism due to acetaminophen exposure.

“I would say in the last seven years, the manufacturers, the FDA, OBGYNs have been or should have been aware of this evolving literature and how convincing it is,” Ness said. “None of them have done anything to alert the American public.”

Not everyone agrees.

“Since the genetics and environmental etiologies of autism and ADHD remain poorly understood, I would advise caution in linking Tylenol to causation or increased fetal risk,” Dr. DaCarla M. Albright, associate professor of clinical obstetrics and gynecology at the University of Pennsylvania School of Medicine told HealthyWomen.org.  “We have more to learn.”

In response to the consensus, The American College of Obstetricians and Gynecologists insisted that “the statement, and studies that have been conducted in the past, show no clear evidence that proves a direct relationship between the prudent use of acetaminophen during any trimester and fetal developmental issues.”

They continue to identify acetaminophen as safe for pain relief during pregnancy.

In an email, an FDA spokesperson stated that the research studies on acetaminophen published in the medical literature are “too limited to make any recommendations.”

“Because of this uncertainty, the use of pain medicines during pregnancy should be carefully considered,” an FDA spokesperson said. “We urge pregnant persons to always discuss all medicines with their health care professionals before using them.”

Dr. Ness believes prolonged use of acetaminophen during pregnancy could increase the risk of developing ASD between 50 percent to 70 percent.

“Those are really the women that we’re trying to get the message out to saying, just only take it for the shortest period of time that you can take it for at the lowest dose possible,” Ness. “I am not advocating that women walk around in pain just because they’re pregnant. What I’m saying is just be judicious about your use. Be aware, be judicious, and if possible, try alternative forms of pain control that are not in a pill.”

The A.J. Drexel Autism Institute in Philadelphia was founded 10 years ago as the nation’s first autism research center. Diana Schendel, Ph.D., a professor at the institute, said researchers there have not studied that particular question but have investigated other medications used in pregnancy and the risk for autism in the child, such as antidepressant use. There are many challenges to reaching a firm conclusion regarding the safety of medications in pregnancy. The studies looking at Tylenol and the risk for autism or ADHD are no different.

“One of the biggest challenges is teasing out whether it is the action of the medication itself that may be risky or is its characteristics of the pregnancy or the health of the woman taking the medication that has not been measured that may be the true risks,” said Schendel. “For example, there could be factors related to taking a large amount of medicine over a long time (versus taking only a small dose on rare occasions) that could be risky, but if those factors are not looked at in a study (or not measured well), then it is difficult to know for sure if the risk to the child came from the drug itself or from these others factors which weren’t measured.”

Now the issue is headed into the court system. A multidistrict litigation lawsuit has been filed, and in October 2022, it was certified that New York would house all Tylenol lawsuits filed in any federal court in the U.S.

The law firm of Miller and Zois expects over 100,000 victims will file a Tylenol autism lawsuit.

“I think what’s interesting about this acetaminophen lawsuit is, I think it’s going to be the straw that broke the camel’s back on all the issues in the world of autism,” DeGroodt said. “Imagine your child has been given a diagnosis, but nobody knows what to do. It’s then up to the parent to research and figure out what can help their child. If your child were diagnosed with cancer, that would never happen.”

For worried parents today, Schendel says the consensus statement from Nature Reviews Endocrinology summarized the situation well: there “may be a risk, but there are still uncertainties.” 

“The best guidance is for women to talk with their care providers before taking any medication during pregnancy and, if the medication is needed, in consultation with their care providers, take the smallest possible dose for the shortest possible time,” she said.

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