Any ‘miracle cure’ that suddenly surfaces for any condition, disorder, or behavior should always be considered with caution, and this may be doubly true when the ‘condition’ in question is a neurotype.
Miracle cures that have been touted for autism in the past have included severe, abusive tactics, and there have even been charges pressed against individuals for selling fake cures that caused severe harm to innocent children. Some treatments do purport to help with some symptoms or effects, and one product recently has shown some initial success in supporting a specific subset of autistic children who are nonverbal.
However, that product is currently not easy to access (nor yet fully proven,) and some parents have resorted to trying other options, which experts say could make things harder for autistic kids, instead of making anything better.
There Is Some Early Evidence For One Drug — But With Caveats
Autism is, at this time, assessed by the presence of several traits or symptoms. We can say with a substantial degree of certainty that there is a genetic component, but a specific gene or set of genes that causes autism or autistic traits has not been identified.
However, one neurological condition that results in some of the traits that may be identified as autism (some sensory processing and communication struggles in particular) is cerebral folate deficiency (CFD). For patients whose traits result from CFD, there’s a drug called leucovorin calcium, sold under the name Wellcovorin, that might help.
The drug has been used for cancer patients, and earlier this year, the FDA approved it for use in some patients with these specific autism-related traits resulting from this specific cause — a neurological condition that prevents folate from being adequately transported into the brain.
It should be understood that this is not a “cure for autism,” no matter how it may be presented. It’s a medication that may help with some specific struggles when they come from a specific cause.
For children with CFD, and their parents, it may be life-changing. Parents of some children in the trials report that their nonverbal children have begun using “meaningful word approximations,” and others with limited speech have begun forming complete sentences.
The problem is that these cases may be very niche — the studies that have shown success with the drug have had only a few dozen participants, reports the Washington Post, and even there, it hasn’t been successful for every child.
Parents Seeking Alternatives May Find More Harmful Treatments
Leucoverin is also referred to as folinic acid. Despite the similar names, it’s not the same thing as folic acid, and the prescription drug is not the same as supplements that can be bought over the counter.
Both are forms of folate, and the simplest explanation of the difference, according to Biology Insights, is that folic acid is a synthetic supplement that the body must convert into folate. Folinic acid is considered a “pre-activated” form. In other words, the body doesn’t have to do all that work to make it usable.
Parents who can’t access the prescription drug (which is unlikely to be covered by their insurance, and isn’t currently considered a standard treatment by doctors) are grasping for anything they think may work in the same way, including over-the-counter supplements of folinic acid and even folic acid.
Unfortunately, this may backfire. Supplements are not as well-regulated as prescription drugs, so they may not contain what they claim, and often do not contain the dosages they claim, making them a poor way to treat anything.
Further, experts say that attempting to use folic acid in place of folinic acid could cause more problems.
The Folic Acid Problem
Humans need folate, and poor folate transport to the brain may be the cause of some symptoms or traits associated with autism. It must be reiterated that this is not the same as saying that folate deficiency “causes” autism.
However, if the body is already struggling to transport folate to the brain, loading up on extra folic acid isn’t likely to help, and may even make things worse. Pediatric neurologist Dr. Richard Frye told the New York Post that too much unconverted folic acid could stay in the bloodstream, overwhelming the metabolic process.
For kids with cerebral folate deficiency and autism, he added, “we think that the folic acid will essentially plug the transporter,” making it even harder for the nutrient to reach the brain.
He believes that excessive use of folic acid supplements could actually cause even more difficulties for kids who have autistic traits caused by CFD.
What Should Parents Do?
First, consider what you’re trying to treat.
If you are seeking to turn your autistic kid into a non-autistic kid, you should rethink. Your child’s autism isn’t a disease to cure, but a part of who they are.
If you’re trying to help them overcome specific traits and symptoms, the next question is whether you’re trying to make life easier for your child or those around them.
Ultimately, some traits (like being nonverbal, struggling with sensory sensitivities, and social engagement difficulties) do make life harder. You can always talk to your child’s doctor about medications (including leucovorin) and therapies that are proposed to make these things easier for your child, primarily if your child can communicate that they are interested in this kind of support.
However, it’s never a good plan to skip the doctor! Don’t fall for remedies touted online, and it’s usually not a good plan to add supplements (even in standard doses, and especially not in megadoses) to your child’s diet without talking to their doctor.
In the meantime, keeping an ear out for developments is a good plan, and if Wellcovorin or similar drugs continue to show promise, access to them will expand.