salicylates

Pathological Demand Avoidance (PDA) in children with autism – how much is behavioral and how much is due to low serotonin?

June 9, 2023 By Trudy Scott 14 Comments

Pathological Demand Avoidance (PDA) is a condition associated with Autism Spectrum Disorder (ASD). It is a rare behavioral phenotype of ASD that is characterized by an overwhelming or obsessional need to resist or avoid demands, which can often lead to sensory overwhelm causing meltdowns and violent outbursts.

Although children in general may often try to avoid demands, children with PDA engage in avoidant behaviors at a greater level.

The key underlying factor is the extreme levels of anxiety associated with a loss of control, which can feel like a panic attack. Because of high levels of anxiety, they will often respond with a “No” even to tasks or activities that they normally enjoy and can spend a great deal of energy trying to gain control of situations and people.

(from an Australian PDA article: What is Pathological Demand Avoidance (PDA) and how can we address it? so I changed the spelling of behavioural and characterised to be American)

This is a typical overview of PDA and the common recommendations (as outlined in the above article) are all behavioral interventions: be an active listener and build trust, depersonalize requests, provide indirect praise, use humor and so on. Many parents find these helpful but the biochemical imbalances that trigger these behaviors are being ignored and/or there is a lack of awareness. I’d like to change this so more children and teens get quick relief.

There may be many different root causes such as low serotonin, low GABA, low blood sugar, gluten sensitivities, low zinc, low vitamin B6, low vitamin D, toxins, infections, phenols, salicylates etc. Today I’m going to discuss low serotonin and my rationale for reaching this conclusion. It’s also one of the quickest root causes to confirm (more on that below).

My rationale for proposing that Pathological Demand Avoidance (PDA) in children with autism is related to low serotonin

If we take the description above, all of these symptoms are classically found when a child (or adult) has low serotonin:

Extreme levels of anxiety
Can feel like a panic attack
Overwhelm
Meltdowns and violent outbursts
Loss of control
Spending a great deal of energy trying to gain control of situations and people (i.e. controlling)
Obsessional need to resist (any kind of obsessing is common when serotonin is low)

The second reason I suspect low serotonin with PDA is the timing of these behaviors i.e. later in the day. The article mentions that “A child with PDA can be very calm, cool and compliant at school and behave much worse at home. This is not because of incompetent parenting but because they have reached their tolerance levels and need to release that suppressed anxiety.”

This may well be a factor, however low serotonin symptoms are recognized as being more severe in the afternoon/evening when serotonin levels start to decline. If these children have low serotonin then it makes sense that these symptoms would start to increase once they get home.

My third reason is that low serotonin is common in autism/autism spectrum disorder (ASD).

Low serotonin is common in autism/autism spectrum disorder (ASD)

This paper, Vitamin D hormone regulates serotonin synthesis. Part 1: relevance for autism, summarizes it as follows: “The disruption of the serotonergic system is one of the most consistent observations associated with autism. Serotonin in the brain promotes prosocial behavior and correct assessment of emotional social cues.”

Their recommendations are vitamin D and tryptophan supplementation which they say “may be a simple method of increasing brain serotonin without negative side effects.”

Testing for low levels of vitamin D and supplementing accordingly is important.

Are there other low serotonin symptoms and using a trial of tryptophan to confirm

As mentioned above, low serotonin is also one of the quickest root causes to confirm. As always, regardless of the diagnosis, we assess for low serotonin by rating symptoms on a scale of 1 to 10 (with 10 being most severe) and do a trial of tryptophan (chewed or a capsule opened on to the tongue). You will have your answer very quickly because we rate improvements in symptoms in the next 5 to 30 minutes.

In addition to the above symptoms we also look for these: worry-in-your-head and ruminating type of anxiety, phobias, lack of confidence, depression, negativity, imposter syndrome, PMS, irritability, insomnia and afternoon/evening cravings for carbs and sugar.

Lidtke is the only brand of tryptophan that I recommend simply because I see it work so well and because of quality issues with tryptophan in the past. Here are the Lidtke tryptophan products I recommend:

Lidtke Chewable Tryptophan 100 mg is a good for doing a trial and works when lower doses are needed as with children.
Lidtke Tryptophan 500 mg can be used for doing a trial. I open the capsule and use 100mg for a child. Going forward this product is helpful when higher doses are needed, especially at night. When opened it doesn’t taste very good but can be mixed with inositol or even glutamine powder or mashed banana.

You can read more on this blog: Tryptophan for the worry-in-your-head and ruminating type of anxiety, see the full list of low serotonin symptoms here and find the tryptophan products on the supplements blog here.

If you’re new to PDA, the DSM and low serotonin/other biochemical factors

Professor Elizabeth Newson was a developmental psychologist known for her work with children in the autism spectrum. This is her 2003 paper on the topic – Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders

It’s not part of the DSM-5, the standard classification of mental disorders used by mental health professionals in the United States. This article, A Brief History of Pathological Demand Avoidance, offers a good backstory and shares why families want it to be part of the DSM.

Whether or not it becomes a distinct condition or autism subtype in the DSM, I’d like to see low serotonin (and likely low vitamin D) being recognized as one root cause. And acknowledging that there may be many other biochemical/nutritional approaches that should also be explored.

These symptoms are listed in the above article, in addition to avoidance behaviors, and all could fall into typical low serotonin symptoms:

verbal and physical aggression when feeling loss of control
self-injurious behavior
property destruction
refusal to participate in self-care such as bathing or brushing teeth (is this depression?)
inability to attend social events (is this fear and social anxiety?)
controlling what noises are allowed in a home, such as no music, or only certain music
inability to allow parents to have friends visit the home (is this also controlling?)
are often combative with siblings
issues with food, what to eat, when to eat, who to eat with
conflict with siblings

As mentioned above we also look into low GABA and low blood sugar (trials of GABA and glutamine will give quick confirmation too), gluten sensitivity, low zinc, low vitamin B6, toxins, infections, phenols, salicylates and so on. Of course, Nutritional and Dietary Intervention for Autism Spectrum Disorder is crucial.

Some success stories and connecting the dots with low serotonin

These two success stories illustrate how successful tryptophan and GABA can be and also how quickly they offer relief:

This blog post illustrates similar low serotonin symptoms and end-of-the-day timing in adults with Alzheimer’s – Sundowning in Alzheimer’s and dementia: melatonin/tryptophan for the agitation, restlessness, anxiety, disturbed sleep and aggression. It’s low serotonin that is the cause, regardless of the diagnosis.

This blog illustrates another mechanism for these types of disruptive behaviors: Christmas tree phenols as a trigger for anger, meltdowns, anxiety, hyperactivity, insomnia, aggression, self-injury and autistic symptoms? There is a serotonin connection when there are phenol issues too.

Resources if you are new to using amino acids as supplements

If you are new to using amino acids as supplements, here is the Amino Acids Mood Questionnaire from The Antianxiety Food Solution (you can see all the symptoms of neurotransmitter imbalances, including low GABA, low serotonin and low endorphins).

If you suspect low levels of any of the neurotransmitters and do not yet have my book, The Antianxiety Food Solution – How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood, and End Cravings, I highly recommend getting it and reading it before jumping in and using amino acids on your own so you are knowledgeable. And be sure to share it with the practitioner/health team you or your loved one is working with.

There is an entire chapter on the amino acids and they are discussed throughout the book in the sections on gut health, gluten, blood sugar control, sugar cravings, anxiety and mood issues.

The book doesn’t include product names (per the publisher’s request) so this blog, The Antianxiety Food Solution Amino Acid and Pyroluria Supplements, lists the amino acids that I use with my individual clients and those in my group programs. You can find them all in my online store.

If, after reading this blog and my book, you don’t feel comfortable figuring things out on your own (i.e. doing the symptoms questionnaire and respective amino acids trials), if you need serotonin support, the Serotonin QuickStart Program is a good place to start. This is a paid online/virtual group program where you get my guidance on using tryptophan and 5-HTP safely, and community support during 5 LIVE Q&A calls. You can sign up to be notified when the next live launch of this program is happening. We take a deep dive into product options including Lidtke products and others if you’re not able to access Lidtke.

If you also have low GABA symptoms, the next step to get help is the GABA QuickStart Program.This is also a paid online/virtual group program where you get my guidance and community support. Another option is the budget-friendly GABA QuickStart Homestudy program.

If you are a practitioner, join us in The Balancing Neurotransmitters: the Fundamentals program. This is also a paid online/virtual program with an opportunity to interact with me and other practitioners who are also using the amino acids.

Now I’d like to hear from you

Have you been told your child may have Pathological Demand Avoidance (PDA)? Have you only been offered behavioral change tools and how have they helped?

Has low serotonin (and other biochemistry imbalances) been discussed too?

What symptoms does your child have and are things worse later in the day?

Has tryptophan helped reduce the above low serotonin symptoms in your child? How much helps and how quickly?

Or do you find 5-HTP works better? If yes, how much helps and how quickly?

What other biochemical changes have helped?

If you’re a practitioner, are you hearing about increased discussion of Pathological Demand Avoidance (PDA) and do you address low serotonin with your clients/patients?

Feel free to post your feedback and questions here in the comments.

Christmas tree phenols as a trigger for anger, meltdowns, anxiety, hyperactivity, insomnia, aggression, self-injury and autistic symptoms?

December 18, 2020 By Trudy Scott 16 Comments

Are you aware that the aromatic oils that give pine trees their wonderful smell are phenols and that these phenols may be a trigger for anger and meltdowns, anxiety, hyperactivity, irritability insomnia, self-injurious behavior, digestive issues and autistic symptoms (such as stimming, swinging and hand-flapping)? All this can be caused by an indoor Christmas tree in susceptible individuals.

My colleague Julie Matthews writes about this here: Avoiding Holiday Havoc: Healthy solutions to avoid meltdowns and keep the holidays happy

“When phenols are not able to be broken-down and detoxified by a process called sulfation, which is low in many children with autism and ADHD”, they can cause these symptoms and also red cheeks and ears. She shares that “phenolic compounds come in many forms including artificial petroleum-based food additives, and salicylates (a type of phenol) found in plants and foods like strawberries and spices, as well as pine trees.”

In the above blog, Julie shares this story about a client with a 10-year old son with autism. He severely regressed during the holidays and it was because of the Christmas tree. This is what the mom shared:

During the Holidays our son regressed severely. He became anxious, aggressive, and self-abusive. He cried and had tantrums regularly throughout the day. He couldn’t sleep anymore and was up for hours at a time, night after night. He was hand-flapping like crazy. We have a swing in the house for him and he now wanted to swing all day long, constantly, and do nothing else. He lost eye contact and he stopped responding to his name.

Once the Christmas tree was removed the improvements were dramatic:

The next day, he was much calmer. He seemed to have “exhaled.” Within 48 hours, our son was completely back to normal.

I shared Julie’s blog on my Facebook page and a father in my community shared a similar experience about his autistic son’s severe reactions to phenols:

Yes! My autistic son who is sensitive to phenols, would completely meltdown during the holidays. We thought it was just the change in routine and his environment, but quite by accident we discovered fragrances seemed to make him worse. We got rid of the fragrances and holiday tree/decor and the improvement in our son was dramatic! We now realize it was the phenols.

My son’s reaction to phenols/fragrances are bright red cheeks/ears, dark under eye circles, headaches, inappropriate manic laughter, aggression/self injurious behavior, marathon meltdowns/screaming, incontinence, insomnia/less than 3 hrs sleep a night, bumpy rashes, GI issues/diarrhea, excessive sensory stimming (hand flapping, lip licking, running around and body slamming into things.) During the holidays, the intensity of these reactions shot through the roof.

They found out by chance that it was the Christmas tree that was causing his son’s issues each year. It started when he was a toddler and they figured it was the stress and changes of the holidays that was the issue. One year they didn’t put up a tree and they could not believe the difference. It was then they made the connection and learned more about phenols and made the necessary changes.

By reducing phenols in his diet and environment, and giving him Epsom Salt baths and enzymes (No-Fenol), most of the above symptoms were significantly reduced.

I suspect there are many families who are seeing similar meltdowns and have no idea it could be the Christmas tree. Keep in mind that the reactions may not be as severe as these two cases I’ve shared here. If you are seeing any increase in anxiety, irritability, sleep problems, digestive issues or other unusual behavior changes in your child, keep an open mind that it may be more than just the holiday changes.

Julie’s advice is this:

Since so many children with autism and ADHD react to salicylates/phenols – in her nutrition practice she finds an overwhelming majority react negatively – she suggests a cautious approach to holiday decorating for all families of a child with autism or ADHD. Simply avoid the pine Christmas tree.
If you are unsure about their sensitivity to salicylates/phenols you might ask yourself if your child is often hyper, irritable, or has red cheeks, and other common salicylate symptoms, or whether they crave salicylate-rich foods such as berries, grapes, apples, and ketchup. If so, explore salicylates further.

I encourage you to read Julie’s blog to gain a better understanding of salicylates and phenols. If you are a practitioner and want to learn more about low salicylates/phenols and other special diets her practitioner training is excellent.

I appreciate this mom and dad for sharing their experiences with their sons so we can all learn and help other families. I also so appreciate Julie’s expertise in this area and really look forward to digging further into the research and picking her brain so I can share more.

Could your holiday anxiety and/or insomnia be phenol issues too?

Julie works with children with autism and ADHD but as someone who works primarily with adults with anxiety, I’m going to be exploring sensitivity to salicylates/phenols further. Julie recently shared this with me: “if you start looking you’ll probably see a lot of your clients with anxiety have phenol issues.”

If you also notice any increase in anxiety, anger, irritability, sleep problems, digestive issues or other unusual behavior changes, keep an open mind that it may be more than just the holiday stress or winter blues/winter anxiety. It may well be phenol issues too.

Serotonin connection to phenol issues

I’ll be blogging more about this and the fascinating serotonin connection to phenol issues. You may have noticed that many of the symptoms these 2 boys experienced sound a lot like either low serotonin or high serotonin (both of which can occur in autism). Serotonin is an endogenous phenol compound and this phenol issue is likely causing high serotonin.

When I asked Julie about this she shared this with me: “Yes, serotonin and dopamine are phenolic. And sulfation is important for the inactivation of dopamine and serotonin. So poor sulfation can lead to neurotransmitter imbalances.”

Using collagen to lower high serotonin?

I’ve blogged about how collagen can lower serotonin in susceptible folks and increase anxiety. It is also used by some folks to lower their high serotonin and make them calm. Misty reports using collagen ‘therapeutically’:

I use it to reduce tryptophan because I have a tendency toward high serotonin. I have suffered my entire life with ADD, tics as a child, grinding teeth, general anxiety, lack of motivation and later, IBS. In my 53 years I’ve never been as calm as I am now.

I don’t know if Misty has a phenol issue but I’m going to be exploring if collagen or gelatin could possibly be used to help lower the high serotonin and ease some of these severe phenol reactions quickly, in conjunction with other approaches like avoiding the foods and environmental exposures, enzymes and other nutrients, and Epsom salt baths.

Christmas tree syndrome, mold issues and toxic plastic trees

I hate to spoil the Christmas fun but here are a few other things to consider:

Christmas tree syndrome is also a real issue for many individuals
My friend and Enviornmental Toxins expert Lara Adler shares how mold from a real tree made her and her cat really sick “Within a few days of getting the tree, I broke out in a full-body rash that required a 10-day run of prednisone. I didn’t think it was the tree at first (it could have been something else), but then my cat, who was already dealing with GI inflammation and a gut issue developed asthma! Out of nowhere! She also ended up on prednisone. I got rid of the tree and both our symptoms never came back.”
She also shares some issues with plastic trees: they are often made from toxic PVC (polyvinyl chloride) with “softeners like lead and/or phthalates”, and often treated with endocrine-disrupting flame retardant chemicals. More about this on Lara’s blog here.

Have you observed a salicylate/phenol reaction with your child or client/patient? What about a less severe reaction with your child or with you personally?

Have the following helped you: avoiding the foods and environmental exposures like a Christmas tree, using enzymes like No-Fenol and other nutrients, and Epsom salt baths? In the midst of a very severe reaction has collagen or gelatin helped reduce symptoms quickly?

What about mold issues or allergies with a Christmas tree?

Feel free to post your questions here on the blog too.