'A lot of eye rolling going on': Parents of kids with autism sort through new federal recommendations

Rose Baumann would be the first to say that there's a need for more government attention to autism.

She describes her 24-year-old son, Collin, as profoundly autistic. He is able to speak only a few words and wears a helmet to protect himself from self-injury. Because of the level of care that he requires, his parents have been unable to find a day program or a residential facility with the capacity to take him.

But when the Cecil, Pa., resident watched the press conference announcing the federal government's long-promised initiatives on autism, she didn't see solutions.

"There was a lot of eye rolling going on among my community of parent advocates," she said.

Like Baumann, many in the autism community watched with interest Monday as President Donald Trump stood with his top medical advisers to declare a three-pronged approach: $50 million in new research funding, a warning label on acetaminophen, known as Tylenol, and fast-tracked approval of the drug leucovorin, which may improve speech in some children with autism and a folate deficiency. During the televised press conference, Trump seemed to speak directly to pregnant women, forcefully warning them against using Tylenol.

"Don't take Tylenol," he said. "Don't take it. Fight like hell not to take it."

It was a statement that alarmed some pregnant women, given that other common painkillers and fever-reducers, such as ibuprofen, naproxen and aspirin, are not recommended during pregnancy.

"We have been hearing from patients and obviously they are concerned," Devon Ramaeker, division director of Maternal-Fetal Medicine at AHN Women's Institute, said in an interview last week. "What I'm seeing right now is a lot of uncertainty from patients — they're not sure if they've been doing the right thing or who they should trust."

Dr. Ramaeker advised patients to take concerns to their health care providers, adding that her recommendation that patients take Tylenol as needed for pain and fever relief has not changed.

In a statement, UPMC also advised consulting medical professionals. "It is natural to seek explanations and explore potential triggers for medical conditions, especially during pregnancy," said Donald Yealy, UPMC chief medical officer. "We encourage anyone who is pregnant to discuss all medications and health care questions with their trusted health care provider."

The federal recommendations were tied to studies that found a correlation between Tylenol use during pregnancy and children diagnosed with autism. Other studies found no correlation, said Dr. Ramaeker, who also noted that a correlation doesn't mean that Tylenol use in pregnancy causes autism.

She likened it to studies that showed ties between a blood pressure medication and low-birthweight babies that raised the question of whether the medication was the cause — or the condition of high blood pressure itself.

Along the same lines, if there is a correlation between Tylenol and autism, it might come from the conditions that a pregnant woman is using Tylenol to treat.

The recommendation from leading medical groups is that pregnant women should treat fevers with Tylenol. "Fever itself is not a benign condition, especially in the first trimester," said Dr. Ramaeker. "It can increase the risk of birth defects."

In his press conference Monday, Trump also forcefully advised new parents not to follow the vaccine schedule currently recommended by the U.S. Centers for Disease Control and Prevention — giving credence to a long-discredited theory that vaccines cause autism.

The president dismissed the need for the hepatitis B vaccine for babies and urged parents to spread out vaccinations into multiple visits rather than getting multiple vaccines at once.

"Break it up because it's too much liquid," he said. "Too many different things are going into that baby at too big a number."

The problem with that advice is that vaccinations are carefully arranged so that infants and toddlers get the protection at the optimal time, said Amesh Adalja, a Pittsburgh-based infectious disease physician and a senior scholar at the Johns Hopkins University Center for Health Security.

"The schedules are calibrated in order to give someone protection when they need it. The spacing and timing is not arbitrary," he said. "What he was talking about is complete nonsense and anti-vaccine propaganda. It has no basis in reality."

Jesse Torisky, president and CEO of Autism Pittsburgh, appreciated the administration's focus on the topic.

"We are extremely excited that so much attention is going to be focused on this subject and I, like everyone else, am excited to see what else is going to be rolled out."

Torisky's parents started what is now Autism Pittsburgh in 1966 as the National Society for Autistic Children, making it the longest-running autism advocacy organization in the country.

His brother, Ethan, was diagnosed with autism in 1966. Now 68, Ethan lives at the Allegheny Valley School, which is the beneficiary of all sales of the Terrible Towel, designated as such by sports journalist and Steelers commentator Myron Cope because of the care that the school gave his son with autism.

Rachael Bieltz, of Mt. Lebanon, Pa., was skeptical of Health and Human Services Secretary Robert F. Kennedy Jr.'s claims in August that the administration would find the cause of autism by September, and found the health recommendations on Tylenol and vaccines in Monday's press conference "very, very upsetting" to watch.

Bieltz's 12-year-old daughter, Mira, was diagnosed with autism four years ago.

Watching the press conference live, she didn't appreciate the tone of some of Trump's remarks on autism, describing autism as a horrible crisis that tears families apart.

"These are human beings. This is not how we should be perceiving people who don't need to be put in these terms," she said. "Autism is not a horrible disease that needs to be solved — it's a person that needs support and love and accommodations, just like any human with a disability."

She also found the dire warnings about the growth and prevalence of autism to be deceptive, crediting most of the increase to changes in awareness and an expansion of diagnostic criteria.

Her daughter, for example, might not have gotten an autism diagnosis as the disease was defined a decade or two ago.

Mira makes eye contact and is outgoing and highly verbal, said Bieltz, and was initially diagnosed with other conditions such as ADHD before getting the autism diagnosis at age 8. With her autism recognized, she has been able to thrive switching from public school to a smaller, quieter school environment that can support her sensory and social needs.

Bieltz, like Baumann, would love to see more federal funding to support existing families with autism — particularly more money for social services, such as respite care or paraprofessionals in public schools, or for young adults transitioning out of a school setting.

"There are so many areas we could support," she said. "There's a lot more we can do than just blame it on Tylenol."

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