Our exciting discovery | Autism and PANS symptoms calm with anti-androgen herbs

Over the years, I’ve improved my own health tremendously with information gleaned while healing my daughter’s autoimmune conditions, autism, and PANS.

From the gluten free diet, to treating adrenals, to supplements to boost my mood on the cloudiest of days, I owe it all to her.

This time however, it’s knowledge from my own journey that’s helping her and I hope may be useful to you too!

I was using herbs that reduce androgens to stop hormonal skin blemishes for about a year.

They helped so miraculously that I wrote an article about them: 3 Herbs that cleared my skin completely when nothing else worked .

After sharing it, two unanticipated things happened.

First, people began noticing that when taking them, the same day they had an improved mood, better tolerance and greater motivation levels! [My post on that is here]

Second, people asked if the same herbs could be used for children.

The questions got me thinking… could they? And what if they might have hormone regulating benefits far beyond acne?

What if I gave them to my daughter, who didn’t need them for her skin, perhaps as a way to treat autism and PANS?

I knew of the use of hormone suppressing (GnRH agonist) drugs being used for children with autism, but the risks and side effects made them something I wasn’t comfortable trying.

Safe and effective herbs however, to potentially take the edge off some of the excess androgens, was a very enticing option!

In this article, I will first explain why researchers believe the number of males with various cognitive developmental disorders so significantly outnumber females.

Then, I will discuss herbal options (primarily Saw Palmetto) that can be used to treat:

obsessions & compulsions
sociability
cognition
aggressive behaviors and rage
irritability
attention
hyperactivity and more

And finally I’ll share the incredible results we’ve seen!

Male prevalence in neurodevelopmental disorders

Ratio of affected Males : Females

Autism 4 : 1 [R]
Aspergers 10 : 1 [R]
PANS 2.6-4.7 : 1 [R]
ADHD 3-16 : 1 [R]
Tourette’s syndrome 4 : 1 [R]
Childhood onset OCD 3 : 1 [R]

As I searched to answer why the male prevalence is so dramatic, I uncovered substantial amounts of scientific research.

Countless studies explain the sex differences in these disorders and link them to increased androgen levels, including high exposure in utero. [R]

Regarding prenatal exposure, women with elevated androgens or PCOS may want to research [beginning with this study and this study] how significantly fetal testosterone levels are associated with children’s behaviors ranging from anxiety to many above listed disorders.

Reducing androgens during pregnancy may be beneficial for prevention and should be addressed in great detail!

For this post, we will focus on helping our children who already have challenges.

Much of the research below is from the autism community, but you will see how it’s applicable to ADHD, OCD, brain development issues, and neuroinflammation / PANS, so please don’t leave yet if your child doesn’t have classic autism.

Male dominant traits in autism spectrum disorders

ASD has been hypothesized to be an exaggeration of the typically male traits of low-empathizing and high-systemizing behaviors.

The ‘Extreme male brain‘ theory of autism as it’s quite politically incorrectly named, has been analyzed and supported by many research papers such as, The Systemizing Quotient.

The theory is that females typically have a stronger drive to empathize and respond to another person’s emotions and thoughts, while males generally have a stronger drive to systemize, analyze, and construct certain rule-based systems and many people with ASD’s tend to exude higher male brain characteristics.

Elevated androgen levels in spectrum disorders

A large number of studies have found elevated androgens associated with autism spectrum disorders. A small sampling of them include:

A study of children of both sexes aged 3-4 and 7-9 found markedly increased levels of androgens in children with ASD, indicative of precocious/ early puberty. [R]
A study found serum androstenedione levels significantly elevated in individuals diagnosed with ASD. Androstenedione is converted into testosterone and dihydrotestosterone (DHT) in hormone-sensitive tissues and organs (including the brain). [R]
A study of females with Asperger’s syndrome found elevated levels of 17 biomarkers including androgens and testosterone. According to the authors, “confirming predictions from the ‘extreme male brain’ and androgen theories of autism spectrum conditions.” [R]

Collectively, the studies suggest that hyperandrogenism may be a significant risk factor for ASD [Sex differences in Autism Spectrum Disorders]

The next question we must ask is, how can elevated androgens cause these conditions?

A substantial link: RORA Levels

Prominent recent studies have found a reduced level of RORA (Retinoic acid-related orphan receptor-alpha) in the brain tissues of individuals with autism. [R]

The researchers propose that this finding helps explain how testosterone influences ASD risk because RORA deficiency is linked to aromatase deficiency.

Aromatase* is an enzyme that converts androgens to estrogens.

Low aromatase and high androgen levels – found in individuals with ASD – when combined with reduced RORA, create a negative feedback loop, even further reducing RORA.

Because RORA performs critical roles in brain development as well as neuroprotection against inflammation and oxidative stress, this may very well explain some of the causes of autism, PANS and other male prevalent neurological conditions.

For more on the RORA gene please see the research linked above and/or: RORA Just the Gene for Autism we wanted

*Note the aromatase enzyme, because there is an herb we’re using that can increase it.

NEW Information – They may not have lab elevated androgen levels

I’m updating this post to add that from the quantity of reports of parents seeing benefits from saw palmetto (thousands of kids), I believe many of them are simply highly sensitive to androgens. It may not be they their levels are elevated, but rather they are sensitive to “normal” androgen levels.

Another theory I have is that children who have impaired detox abilities, such as MTHFR gene mutations have a build up of hormones – also causing symptoms.

Androgens, glial cells, and immune response

Another potential reason testosterone specifically influences the risk for neurodevelopmental disorders may involve glial cell function in the brain.

The glial cells surround neurons and provide support for and insulation between them.

Glial cells are abundant in the central nervous system and are necessary for neurological protection and proper immune function.

It’s proposed that male and female sex hormones affect both the number of glial cells and the levels of immune molecules, leaving males particularly neurologically sensitive to the effects of early-life immune challenges or injury. [R]

In other words, excess androgens may cause the brain to be unable to respond appropriately to immune challenges and lead to neurological disorders.

So, there’s a correlation between certain symptoms and disorders and increased androgens.

Do the symptoms change when hormone levels are altered?

Observed effects of suppressing sex hormones with gonadotropin-releasing hormone (GnRH) agonists

GnRH agonist drugs have been used to reduce levels of serum testosterone, lutenizing hormone (LH), and follicle-stimulating hormone (FSH) in both adults and children with neurodevelopmental disorders and autism.

These drugs are strong and carry side effects that can be serious.

I’m not advocating using them, but reviewing the significant results they’ve had is important.

In a study with males who had therapy resistant OCD, the drugs brought about a considerable improvement of the severity of symptoms. “The finding gives further support to the contention that anti-androgenic agents are effective in the treatment of obsessive compulsive disorder.” [R]
In two studies of Alzheimer’s patients, investigators found a significant decrease in aggressive and impulsive behaviors. [R, R]
In several studies with children, researchers found that as androgen levels decreased, there was a dramatic reduction in autistic-like behaviors. The areas with significant improvement reported were: [R]

increased sociability
greater cognitive awareness
reduced aggressive behaviors and rage
less irritability
mastering school skills
better sleep patterns
improvements in attention
decreased hyperactivity
reduced excessive body and facial hair
reduced stereotypy movements

Observed effects of INCREASING androgens by giving testosterone.

One interesting study administered testosterone to young adult females and found it significantly impaired their social intelligence including their cognitive empathetic ability to infer emotions, intentions, feelings and other mental states. [R]

What are typical symptoms of elevated androgens?

In addition to rule governed thinking or a highly systemizing brain, some symptoms that may suggest elevated androgen levels are:

Early onset of puberty, including facial and body hair growth
Anger, short temper, rage, aggressiveness
Mood swings, depression, low energy, lack of motivation
Impulsivity, risk taking
Acne & cystic acne
Adult Males: male pattern baldness, enlarged prostrate and low sperm count [R]
Adult Females: hirsutism – increased facial and body hair, thinning hair on the head, polycystic ovary syndrome (PCOS) – menstrual irregularity / dysfunction, infertility and virilization [R]

What about using anti-androgen herbs as a safe, much gentler alternative to GnRH agonists?

In my research, I was surprised that I didn’t find anyone who referenced or studied these herbs for childhood neurodevelopmental disorders, which made me very curious and excited to determine their potential.

Critical point #1 Impaired ability to detox also likely plays a role.

Many of our kids also have genetic issues such as MTHFR defects which make detoxification of hormones more difficult. Because of this, the DHT can build up in their system causing a greater impact than it would for someone without impaired detoxification.

Critical point #2: Sensitive people are more sensitive to hormone exposure.

It follows that they will be more greatly affected by the negative symptoms hormones can cause than someone who is less sensitive. Our kids are typically very highly sensitive to hormones of all types.

Anti-androgen herbs

Because of the research I’d done to treat my skin and the profound results, I knew a combination of herbs could effectively reduce androgens.

For my daughter, I selected the three herbs I had success with and one additional herb that has specifically been shown to increase aromatase activity (recall the RORA discussion above).

1. Saw Palmetto

Saw Palmetto is a small palm tree. The extract from it’s serenoa berries has been shown to reduce the uptake of androgens by blocking 5-alpha-reductase, the enzyme that converts testosterone to DHT (a.k.a. the “bad” testosterone) into tissues by 40%. [R].

UPDATE:

We currently only use Saw Palmetto – I have found it’s effective enough on its own.

The most important advice I can give is:

Purchase a potent brand (with 85% standardization – Dr’s Best shown above)
The Superor lab’s brand (on right above is only half as strong)
Dose it first thing in the morning and again 4-6 hours later.

Additional options if you want to experiment even further:

2. Vitex

Vitex fruit, also known as Chaste Tree berry, is often used to correct hormonal imbalances. Studies have shown low doses of Vitex (Agnus castus extract) to effectively increase prolactin and reduce androgens and DHT. [R]

Vitex, in one study, was shown to increase dopamine, so if your child is prone to OCD, you may want to skip this one.

3. Black Cohosh

Black Cohosh is a plant in the buttercup family. The extract containing triterpene glycosides has the ability to inhibit androgens so well that it’s been proven to prevent growth in androgen sensitive cancer cells. [R]

4. White Peony

Paeoniflorin, a compound found in white peony has been documented to inhibit androgen synthesis and stimulate aromatase activity. [R]

Because aromatase is responsible for increasing RORA which performs critical roles in brain development as well as neuroprotection against inflammation and oxidative stress, white peony is an important herb.

*Note: The supplement, DIM, blocks aromatase and should be avoided for anyone with excess androgens.

An Update on Plant Derived Anti-Androgens, in the International Journal of Endocrinology and Metabolism, summarizes some of the research on these herbs. Their reference list of Pubmed articles is very helpful for more information on the studies they reviewed, safety of each, and recommended dosages.

For more on saw palmetto specifically (because the above authors didn’t include much of the research on it), please see: Saw Palmetto May Reduce Elevated Androgens in the Journal of Restorative Medicine.

I think it’s important to remember that these herbs are not GnRH agonist drugs. They are blocking the effects of excess androgens, not shutting down the production of hormones.

They are gentle, yet the benefits in our case were quite noticeable.

What I’ve witnessed is that they very effectively can reduce the severity of symptoms of autism, adhd, PANS and other neurodevelopmental disorders.

Why are they so beneficial for people’s moods?

Because of the amazing improvements many people have reported in our RK Village group for anxiety, irritability, depression, obsessive negative thoughts, low energy / lack of motivation, anger, short temper, in both women and men, I wrote a separate post on those topics.

Briefly, in my research, I learned that ELEVATED androgens are associated with:

• Excessive amygdala activity – The amygdala is the part of the brain that makes us afraid of things outside our control (anxiety, ruminating on negative thoughts and fears).

• A drop in serotonin levels – Low serotonin levels have been linked to depression, anxiety, low energy, and being tense and irritable. RAISING serotonin helps regulate mood, behavior, appetite, digestion, sleep, memory, and so much more.

• Increased secretion of stress hormones – Excess cortisol from the adrenal glands can be released by people with high androgens. See my other post to learn more about all 3 of these issues and more.

Note: Some children and adults who have high androgens but also low cortisol may need additional adrenal support when taking these herbs.

If you see any emotional lability, unexplained tears or meltdowns, suspect adrenals.

Because the adrenals are tied to testosterone production, it’s best not to increase adrenal support too much, but to find the ideal balance by possibly reducing the dose of anti-androgens.

Our Experience

We began using saw palmetto and by the next day, we noticed a reduction in the bursts of anger she’d been having when asking her to do a non-preferred activity.

These episodes began with the onset of her PANS flare 6 months ago and also coincided with her turning 11 years old.

To verify what we were noticing was attributable to saw palmetto, I stopped using it for several days. She reverted to exactly how she had been prior. When I restarted it, I also added vitex and black cohosh.

This time it was very evident the rage episodes were muted and short lived. Instead of up to 10 minutes of out of control behavior, she merely had a quick flash of anger in her eyes that she was able to control. I was amazed!

Perhaps even more surprisingly, she began using longer, more descriptive sentences including previously unused adjectives. She became more present and engaged.

And most shocking of all, some of her remaining PANS neurological symptoms (including involuntary head and body movements) were noticeably fading quickly.

After a few weeks, I added white peony. The very first day, the remaining flashes of rage were 100% gone and she was very calm, even more engaged and not fidgety anymore.

I couldn’t believe it! She still lets me know about things she doesn’t want to do.. of course.. but there is no aggression, rage or anger and she’s notably more content throughout the day.

I’m still in awe that these herbs truly delivered as promised for both her and I!

Current Regimen:

I give one dose first thing in the morning and another early in the afternoon.

Saw Palmetto Extract – 320 mg x 2: Dr’s Best Saw Palmetto Standardized to contain 85% fatty acids and sterols – gelcap

Another brand we use is: Superior Labs – Standardized to contain 45% fatty acids and sterols – capsule (can be divided / added to food & easier to adjust dose) **Only half as strong – need 4 caps per day**

•••

2023 Update: we no longer use the below supplements, she doesn’t need them, but this is what we used in the past

Vitex – 50mg (half cap) x 2 Nature’s Way
Black Cohosh – 40mg x 2: Nature’s Way – Standardized as 2.5%
White Peony – 150 mg (half cap) x 2 Life Extension – each cap is Standardized providing 125mg paeoniflorin

For reference, she weighs 75 lbs and I’m opening the capsules to give her a smaller dose than the full capsule. (At this time she was only taking 2 caps of superior labs saw palmetto)

Current dosing 2023-2025:

She weighs 130lbs and we are using saw palmetto only:

Dr’s Best Brand – 1 cap am / 1 cap noon

and

Superior labs – 1 cap 3pm

It’s important to give at least one dose in the morning because that’s when testosterone levels peak. Taking them with food is also suggested.

The effects seem to diminish between 4-6 hours and if you stop taking them, they don’t last beyond a day.

For the best results, I recommend taking every day and not skipping or taking breaks.

January 2018 notes-

What we’re noticing from initial parent reports is that a majority of children are experiencing overwhelmingly positive results!

I’m thrilled with the excitement exuded from so much of the feedback!

Other herbs to try that we are also using successfully are spearmint [R] and DGL (licorice) [R] – we used 150 mg each per day.

Please know, you do NOT need to follow exactly what we used.

I usually suggest to just start with saw palmetto and that is enough on its own.

Note about Green Tea / ECGC: It’s listed as anti-androgenic, but also shown to be an aromatase inhibitor [R]. I didn’t notice it helping with any of the symptoms described above and I’ve reduced the amount we use given this research.

If you prefer to use liquids, there are many organic tinctures. Hawaii Pharm carries all of the individual herbs: Saw Palmetto, Vitex, Black Cohosh, and White Peony and they contain 300mg per ml.

If you’d like a combination tincture, this one contains Saw Palmetto, Vitex, and Black Cohosh – per the manufacturer there are 220mg of each per serving (select 2oz size for a trial).

Caveat: For non pill swallowers, the contents of a capsule in a liquid (or food) tastes much less strong than the tinctures. Also, the liquid extracts are not standardized like the powder capsules, so the dose may need to be adjusted.

If we want to try them, should we perform testing first?

I’ve read that the reference ranges for hormone testing are not reliable and I agree. My own hormone levels fell well within normal range, and yet I benefitted immensely from reducing androgens.

A theory I have is that some (many) of us are just more sensitive to androgens than others. Or we are less able to detox them – perhaps due the MTHFR gene mutations.

Whatever the cause, if symptoms indicate androgens / DHT specifically could be the issue, that reducing them slightly with an herb is something I would trial without a lab test.

With saw palmetto, changes generally occur quickly (1-2 days), and the effects are temporary. Because of this, it’s my opinion that a short trial is not much of a risk.

As a result of gathering anecdotal experiences, I’m inclined to think that even children without elevated androgens may have a heightened sensitivity to DHT and anti-androgen herbs, based on the volume of people it’s been helping.

Why I decided to treat without testing: 1. She has neurodevelopmental disorders 2. Genetically, she was likely to match myself and 3. She had growth of facial and body hair slightly more than typical. 4. Her symptoms were worst in the morning, when testosterone is highest.

Some children may have low androgens or estrogen dominance [more here] and it’s debatable whether some of these herbs can help. DIM, an estrogen detoxer is something to consider for these children.

If you have concerns about hormone levels in boys, this article referencing how Saw Palmetto helps retain normal levels of good testosterone may help.

If you’d like more specifics, either after a trial of these herbs or before, tests available are: serum testosterone, serum free testosterone, % free testosterone, serum/plasma dehydroepiandrosterone (DHEA), androstendione, and follicle-stimulating hormone (FSH).

Detailed information about testing is included in: What Is a Testosterone Test?
When to Consider a Testosterone Test is another helpful article, although I don’t think I would rely on the chart of reference ranges. I suspect that anyone even slightly above the midline may be helped by these herbs.

In summary

From research and experience, I believe that anti-androgen herbs for autism, ADHD, PANS, and other male prevalent neurodevelopmental disorders are an underexplored frontier with incredible potential.

While these herbs are not a cure for the disorders, for us they have shown to effectively reduce the severity of symptoms.

They also may very well, via glial cell implications, help avoid neurological damage from immune challenges.

It’s with great anticipation that I wrote this article and I’m looking forward to hopefully hearing positive results from other families who give them a try.

I know that like us, many of you would welcome a reduction in obsessions, rigidity, and anger – with an increase in calmness and cognition – as an incredibly remarkable victory!

Update: We have many parents who are reporting some amazing gains, similar to what we observed (and some even greater!) from adding saw palmetto and sometimes other mentioned herbs.

I could not be more hopeful based on what we’re hearing!

2024 Update: This post has circulated a lot! Saw palmetto has become a go-to supplement for many parents and physicians for our kids especially for aggression.

Thousands have reported it helping their children. We are grateful for all of the reports! 🤍

If mood issues are present, please read my subsequent post: Curb anxiety, irritability and low energy with this amazing herb – Saw Palmetto