Gabriella True’s son Timmy didn’t walk until one month before he turned 3 years old. He used to hide under his high chair and even his crib was tented to give him the comfort of the enclosed feeling he sought. Sometimes Timmy would contort his body into what True calls a “tripod” — essentially he would do the downward dog yoga pose but would also gently press his head on the floor for up to 15 minutes at a time. Even more disturbing to the mother of the boy thought to be deaf was when she would pick him up from his special class and he wouldn’t acknowledge her presence.
Timmy was vacant.
True, a mother from Connecticut, said her son has “low-functioning autism,” which comes with a host of other medical issues including mitochondrial dysfunction and seizures, fits which show up in tests but that he doesn’t exhibit physically.
With autism spectrum disorder being designated as a neurodevelopment disorder, behavior and education interventions are probably the most mainstream of treatments. But there are other less common techniques that some parents, like True, are trying. With fewer studies done on these types of treatments though, parents worry it could lead to a misunderstanding with physicians or even a call from a child protective services agency. What’s more, some autistic children also have other comorbid disorders that require seeing several specialists.
“As parents, what do you do? You know that your kid has this disorder. They’re floppy, they’re drooling all the time and they can’t walk. So you do tests and you suddenly have so many doctors on your child’s register that you can barely hold a job down,” she continued. “You’re also afraid that someone is going to go all ‘Hello, munchausen by proxy’ on you.”
Munchausen by proxy, according to the National Institutes of Health, is a an attention-seeking psychological condition where a parent, usually a mother, fakes the symptoms of their child or purposefully sickens them.
While the case involving Justina Pelletier has given the issue of patient and parents’ rights a national stage, other parents of children with rare or misunderstood diagnoses are stepping forward to say calls from social service workers are not unusual. In fact, many expect them.
“If you start going to too many doctors, it’s not if DCF is going to be called on you, it’s when,” True told TheBlaze.
Those supporting the Pelletiers in their battle to regain custody of their 16-year-old daughter Justina, who has been a ward of Massachusetts for more than a year after a disagreement over a medical treatment plan, have said that this family’s case is one that has larger, nationwide implications.
“It should scare the hell out of every American family,” Rev. Patrick Mahoney told TheBlaze in the past. “… people need to pull their head out of the sand and realize what’s happening in Boston could be a precursor to what could be happening [elsewhere] in America.”
While True has not had her state’s Department of Children and Families called on her, Jane Mills, also from Connecticut, has.
Mills’ teenage son was diagnosed and treated for Lyme disease and babesiosis, a parasite also transmitted by ticks, last year. He started to get well again, but then in the fall of 2013, his health declined once more.
“He had headaches, nausea, incredible fatigue” and as a result missed a significant amount of school, Mills said.
The family would learn months later that he had a more virulent type of babesiosis than was originally diagnosed — it was a type not usually found in Connecticut.
Even before this crucial piece to the puzzle of her son’s illness was revealed, though, the behavior of the honors student “looked confusing to people.” As a result, someone reported the case to the state DCF, suggesting “maybe he was being school avoidant,’” Mills recalled.
Then she got a phone call from DCF.
“It was a courteous phone call asking when [they could] come out,” she recounted of DCF wanting to evaluate her family after someone reported her son’s behavior.
When the case worker learned that Mills’ son had been diagnosed with Lyme disease, which was why he was missing school, and that the family had a plan in place, the case was dismissed.
Mills said the visit with the case worker was “actually very pleasant,” but she noted that it’s an added stress on a family to get a call like that.
“I think it’s very difficult for parents who are already having to go to medical appointments, be up at night with child who is sick and then to have to also respond to people not understanding that there’s a real medical issue going on and then document it and share it with those people,” Mills said.
What are parents, who are treating their children for legitimate, medically diagnosed diseases to do with the fear that a social services agency could be called on them?
True said she first finds specialists that she can “feel safe with.” She also said that she, and other parents, keep very detailed files on their children’s diagnoses and treatments just in case they ever need to justify them to social services or to doctors in an emergency situation.
Nneka Mokwunye, director of MedStar Washington Hospital Center’s ethics program, told TheBlaze that physicians and social workers adhere to a code of ethics. She said that when a hospital employee suspects an instance of abuse or neglect, “it is their ethical duty to contact” social services or a similar agency.
Then “those divisions are supposed to investigate that on their own,” she added.
But to parents it really comes down to education.
“[Mandated reporters] need to know that there are difficult illnesses to diagnose and treat out there. When it is a medical concern, they need to dig a little bit deeper and try to see what’s going on before that call is made,” Mills said.
True said parents in the autism community talk to each other on forums to find doctors they can trust with their children’s complex medical care.
“You cannot take [your kids] to some doctors,” she said. “Parents in these communities warn [that some] will call CPS on you in a hot second.”
Mokwunye said the approach at the Washington Hospital Center is to have clinical ethicists on staff, which she said helps improve patient care at all stages and “decreases these conflicts that end up on front page” of newspapers, stopping issues before they start.
“When you see cases around that have caused a lot of scrutiny in the media … a lot of times I sit there and I think, ‘Wow, if it had only happened here would we have been able to take care of it,’” Mokwunye added.
As for True and her son, Timmy, when he was still a toddler, she took him to an autism specialist who suggested she try some dietary changes to see if it helped his behavior. The National Institutes of Health acknowledges that some parents have adopted dietary treatments for autistic children, but cautioned that the child’s nutrition be carefully monitored.
True said she had tried eliminating dairy and gluten products before, but it was exceedingly difficult because her son would actually eat little else outside of these food groups, except for maybe a banana and peanut butter. But she tried again.
Four days after beginning to eliminate food with gluten and dairy, True and her family were at a soccer game.
“People were cheering, screaming, and he burst into tears. He put his hands over his ears,” she said.
They had thought Timmy was deaf.
As time went on, Timmy – now a 9-year-old who still doesn’t talk – stopped making the “tripod” with his head on the floor — something his mother said doctors now think he might have done to try and relieve inflammation in his skull.
But the real turning point was one day when True went to pick up Timmy — the once vacant toddler who barely acknowledged his mother – at school.
“I’ll never forget that day. He was in arms of his aid and he turned to me and lept into my arms,” True said.
This story has been updated to correct that Jane Mills’ son had a different type of babesiosis.