Why We Chose the FRAT Test for Our Autistic Son
When you are raising a child on the autism spectrum, your life becomes a continuous cycle of research. We spend late nights reading about therapies, dietary interventions, and emerging science, all in the hope of finding something that makes our child's life just a little bit easier. It isn’t about changing who he is; it is about removing the obstacles that make his day-to-day existence harder than it needs to be.
Recently, our late-night research led us to something called the FRAT test. It’s an acronym that keeps popping up in autism support groups and biomedical forums, often accompanied by stories of improved speech or reduced anxiety. After discussing it with our MAPS doctor and doing our own deep dive, we decided to move forward with it.
What Exactly Is the FRAT Test?
FRAT stands for Folate Receptor Antibody Test. To understand why this matters, we have to look at how the brain uses folate (Vitamin B9). Folate is essential for brain development and function. Usually, we eat foods rich in folate, and our bodies transport it into the brain through specific receptors.
However, some children have an autoimmune reaction where their bodies produce antibodies that attack these receptors. Think of these antibodies as gum stuck in a lock. The key (folate) is present in the blood, but it can’t get through the door (the receptor) to enter the brain. This condition is known as Cerebral Folate Deficiency (CFD).
The FRAT test is a blood test designed to detect these specific antibodies. It screens for two types of antibodies: blocking and binding. If either is present, it suggests that despite having normal folate levels in the rest of the body, the brain might be starving for it.
The Connection to Autism
Research suggests a significant overlap between Cerebral Folate Deficiency and Autism Spectrum Disorder (ASD). Some studies indicate that a large percentage of children with autism—estimates vary, but some suggest up to 75%—test positive for these folate receptor antibodies.
For these children, the lack of brain folate can contribute to developmental delays, sleep issues, motor control problems, and speech delays. By identifying the deficiency, doctors can potentially treat it, which brings us to our specific motivations.
Why We Decided to Test Our Son
Our son is amazing. He is bright, affectionate, and sees the world in details that most of us miss. But he also struggles significantly with speech and sensory processing. We have done speech therapy, occupational therapy, and various dietary changes. While we have seen progress, it often feels like he is hitting a ceiling that he can't quite break through.
We decided to pursue FRAT testing because we want to know if a biological roadmap exists for some of his struggles. If his brain is indeed struggling to access the folate it needs, that is a physiological hurdle we can actually help him clear.
We aren't looking for a miracle cure. We are looking for optimization. If fixing a folate deficiency can help his brain fire more efficiently, improve his verbal processing, or just help him feel calmer in his own body, then it is a step worth taking. We adopted a "leave no stone unturned" philosophy, and this feels like a very big stone.
The Role of Leucovorin
One of the main reasons we are interested in the FRAT test is the potential treatment option it unlocks: Leucovorin.
If a child tests positive for folate receptor antibodies, standard folic acid supplements generally won't help. In fact, some research suggests regular folic acid can make the problem worse by crowding the receptors that are already blocked.
Leucovorin (calcium folinate) is different. It is a reduced form of folate that can bypass the blocked receptors and cross the blood-brain barrier through a different mechanism. Essentially, if the front door is stuck (blocked receptors), Leucovorin knows how to use the side window.
For children with CFD, treatment with Leucovorin has been shown in some clinical studies to improve language, communication, and attention. The test gives us the data we need to justify trying this medication. We didn't want to start a prescription medication blindly without knowing if the underlying mechanism—the folate deficiency—was actually present.
Is FRAT Testing Covered by Insurance?
This is the question every parent asks, and unfortunately, the answer is often frustrating.
In our experience, and the experience of many parents we have spoken to, the FRAT test is rarely covered by standard insurance policies. Many insurance companies still classify the test as "experimental" or "investigational," despite the growing body of research supporting its utility in diagnosing CFD.
There are specific diagnostic codes (CPT codes) for the test, and some families have had luck getting partial reimbursement by submitting a claim after paying upfront. However, you should go into this expecting to pay out of pocket. The cost typically hovers around a few hundred dollars, depending on the lab and shipping fees.
For us, the cost was a hurdle, but we weighed it against the potential cost of missed opportunities. We viewed it as a one-time expense to rule in—or rule out—a major biological factor in our son's development.
What We Hope to Gain
We are currently waiting for the results, and we are trying to manage our expectations.
If the test is negative: We will know that folate deficiency likely isn't the root cause of his specific challenges. This is still valuable information. It saves us from trying medications that won't work and allows us to redirect our energy to other therapies.
If the test is positive: We have a new path forward. We can work with his doctor to start Leucovorin and monitor him for improvements. We aren't expecting him to suddenly change overnight. But if addressing this deficiency helps him find his words easier or sleep better at night, that is a massive victory for our family.
Moving Forward with Hope
Parenting a child with autism involves making decisions with incomplete information. You try things, you observe, and you adjust. The FRAT test is just one data point in a very large picture, but for us, it is an important one.
It represents the shift from simply managing behaviors to trying to support his biology. We want to give his brain every possible advantage to do the amazing things we know it is capable of. Whether the result is positive or negative, we will have an answer, and in this journey, answers are the most valuable currency we have.
Disclaimer: This post reflects our personal opinions and experiences and is for informational purposes only. It is not intended as medical advice. Always consult a qualified healthcare professional regarding medical decisions or concerns.
