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:
- Rage, anxiety, cravings & insomnia in 11-year old girl with RAD/reactive attachment disorder: chewable tryptophan turns things around
- Half a crushed GABA Calm for my autistic child: sleep, anxiety and sensorimotor skills (writing, horse riding and swimming) improve
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), a good place to get help is the GABA QuickStart Program (if you have low GABA symptoms too). This is a paid online/virtual group program where you get my guidance and community support.
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.
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.
My daughter is 23 and has ARFID since a toddler. I recently had an OAT test and they said among other things commented about Tryptophan:
“some of the OAT metabolites are inhibited by tryptophan – please cease 5HTP supplementation. See explanation for – High kynurenic acid (40), High quinolinic acid (39).”
Is there anything you can advise from this information?
Thank you
Melise
Melise
Many folks choose to stop 5-HTP before doing the OAT. For others, when it’s helping a serious issue such as ARFID, they choose not to and simple ignore the results that may be affected on the OAT. Your practitioner should be able to explain this.
Does 5-HTP help your daughter’s ARFID and other low serotonin symptoms? And does she have an autism diagnosis? Do you suspect PDA too?
Sharing this blog in case you missed it or in case someone reading this needs more info too – How to alleviate the fear and anxiety associated with choking and vomiting in Avoidant Restrictive Food Intake Disorder (ARFID) https://www.everywomanover29.com/blog/how-to-alleviate-the-fear-and-anxiety-associated-with-choking-and-vomiting-in-avoidant-restrictive-food-intake-disorder-arfid/
And this recent one about topical GABA that I see may help in ARFID – Somnium Nighttime GABA Cream: insomnia, anxiety, bloated belly, muscle spasms, MS, ARFID, anorexia, Alzheimer’s and autism https://www.everywomanover29.com/blog/somnium-nighttime-gaba-cream-insomnia-anxiety-bloated-belly-muscle-spasms-ms-arfid-anorexia-alzheimers-and-autism/
My daughter has this and there is more to it. Also pretending, still at 28 yrs old. I have been giving her GABA for years. 500mg Solar to calm down after she is already out of control. The psych recommended it a long time ago along with 5http and some others but the gaba was the only result I noticed. That Dr. got her own practice, cash only, too bad.
She pretends a lot about weddings and children. She hits sometimes. I saw an article in a British based about the whole condition and right away said that was my daughter. It’s awful. People don’t understand.
Helen
Thanks for sharing and contributing to the discussion. You mention pretending and hitting. May I ask which other symptoms I’ve listed that resonated with you i.e. what made you think PDA was an issue for her when read that article? Are her symptoms worse later in the day?
Wonderful to hear GABA helps your daughter calm down after the fact. Ideally we want to get GABA levels up so there is not a meltdown. I have clients use GABA consistently when there are low GABA symptoms of physical anxiety and overwhelm.
You mention 5-HTP too – keep in mind some folks do better with 5-HTP and some do better with tryptophan so we always do a trial of both, especially if symptoms are worse later in the day. And we increase to find the ideal dose for the person. Using the amino acids sublingually/opened/powder/topically can also make a big difference.
It’s wonderful that your psychiatrist was open to GABA and 5-HTP – how long ago was this?
You don’t mention dietary changes – was this something the psychiatrist discussed with you too and if yes what changes have helped?
I wrote a small novel here, copied and pasted in into a word file and I’ll try to shorten it down to a sentence.
If I were an autistic child, with “supposedly” above average intelligence. – I do the quotations because I don’t think I am so smart –
If our subconscious is basically developed by eight years old, and those are my earliest memories. How can, what can I do if these are some the kind of subconscious behaviors that are affecting me as an adult? In a big way? Being that I spent some years in the military also, and have a somewhat violent childhood. Does autism affect adults similarly as it does kids?
Could these autistic characteristics in kids y’all are finding, could they help me figure out how to have a better quality of life? What would you suggest?
K
May I ask which symptoms I’ve listed that resonate with you i.e. what made you think PDA/low serotonin may be something to consider?
Many individuals get diagnosed with autism or Asperger’s syndrome as adults (or recognize the symptoms in themselves). It’s never too late to implement dietary and nutrient approaches including tryptophan and other amino acids, addressing low vitamin D and so on in order to have a better quality of life. You mention a violent childhood so trauma support may be valuable too.
If you are new to this concept of diet/nutrients/biochemical imbalances, my book “The Antianxiety Food Solution” is a great place to start – for dietary info, info on blood sugar control, gluten, gut health, serotonin/GABA and other amino acids and pyroluria which is common in ASD. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
The next step is to follow and learn from my colleague and fellow nutritionist, Julie Matthews. Her specialty is bioindividual nutrition for autism.
There are also a number of blog posts on my site specific to autism so feel free to search and learn.
Hi Trudy!
I could use your advice. My son builds interactive robots for autistic kids for a company called Robokind. There’s a big part of what you teach about seratonin and diet that needs to be shared. I was thinking that the company should place an article on autism and health in the packaging with the robot. What article would you suggest parents or school teachers benefit from the most?
The next question I have for you is regarding my health . I have been diagnosed with so many different inflammatory conditions and I’m not feeling well. I feel nothing. No happiness in years. I miss being exciting about anyone. I’m lacking serotonin for sure but don’t know what to take or how much. I need progesterone too but can’t handle estrogen to balance it. I have these conditions. MTHFR gene, Hashimotoes low functioning gallbladder, cystitis, Epstein Bar, insomnia, high oxidative stress. osteoarthritis osteoporosis, high cholesterol 101east, hair loss. I could go on for an hour. Do you think that low serotonin contributed to all this? I hear that hormones are the issue. I haven’t heard what to do about it other than take pharmaceuticals. Steroids to be exact. What products of yours would you recommended for me? I’m game to try anything.
Thanks Melinda
BTW love your pics and articles. Very much appreciate.
Melinda
Thanks for thinking of me and the families using interactive robots for their autistic kids. I love that your son does this and yes to sharing nutrition/autism information if they are open to it. Can you check with your son? I suspect there may be pushback because of them being approved in schools which typically don’t approve nutritional approaches. I hope I’m wrong.
I also appreciate learning about this approach which was new to me. Sharing this paper for others to read too – Intervention with a humanoid robot avatar for individuals with social anxiety disorders comorbid with autism spectrum disorders https://www.sciencedirect.com/science/article/pii/S1876201822003136 and the Robokind site https://www.robokind.com/
Regarding you and feeling nothing/not feeling any happiness in years, the amino acids are a wonderful way to change that before digging deeper into underlying factors. I start with clients looking at the neurotransmitter deficiency symptoms https://www.everywomanover29.com/blog/amino-acids-mood-questionnaire-from-the-antianxiety-food-solution/. We go from there with trials of the respective amino acids – very possibly tryptophan to address low serotonin lack of happiness and also possibly DPA for low endorphins and lack of joy or tyrosine for crawl-up-in bed sadness.
If you’re new to the amino acids, my book “The Antianxiety Food Solution” is the place to start – you’ll learn about the amino acids and the dietary factors that need to be made too. More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Regarding your other health issues the best is to find an integrative health practitioner to work with.
Hello i could relate to everything i suffer from high anxiety disorder I have seen countless specialists over the years I am now 42 and still no improve if anything gets on top of me i let rip ( scream 3 times) which is very embarrassing at my age , no specialist seems to know what is wrong with me i am exhausted all the time and sometimes feel like i just go through the motions of the day get up go to appointment back home repeat.
My question is do you offer 1 one 1 coaching i would love to meet you or how can i get onto the protocol as i think it might help me
How can i do the protocol if i am allergic to evening primrose oil?
I am also allergic to soy, gluten so try and avoid them like the plague!
I would appreciate a prompt response i just want to see some difference and hopefully get a life which i don’t at the moment.
Fiona
As I write about in this blog, I associate these symptoms with low serotonin and start there.
I do have a waiting list https://www.everywomanover29.com/blog/services/
To get started right away, my book is a great resource when you are new to the amino acids and are looking for a comprehensive dietary approach which makes a huge difference too (and when gluten and soy cause reactions they have to be avoided completely) – The Antianxiety Food Solution https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
I am curious to hear how you react to EPO and if you have a similar reaction to borage?
Hi Trudy,
Thank you for sharing your wonderfully in-depth knowledge on PDA. I am a Nutritional Therapist and would like to know if you have any tips for helping PDA clients to take their supplements?
Thank you in advance!
Molly
The main goal is often to get serotonin levels up and then it becomes easier. I describe some options on this blog – How to alleviate the fear and anxiety associated with choking and vomiting in Avoidant Restrictive Food Intake Disorder (ARFID) https://www.everywomanover29.com/blog/how-to-alleviate-the-fear-and-anxiety-associated-with-choking-and-vomiting-in-avoidant-restrictive-food-intake-disorder-arfid/
I’d love to hear what challenges and successes you have had with PDA? Is this your specialty?
Thanks for your kind words. Hopefully you also have a copy of my book “The Antianxiety Food Solution” More here https://www.everywomanover29.com/blog/the-antianxiety-food-solution-by-trudy-scott/
Also, want to make sure you know about the practitioner training I offer https://www.anxietynutritioninstitute.com/
Thank you for your response, Trudy. I will see if there’s anything we can implement from your blog.
My specialism is paediatric mental health and neurodevelopmental conditions – anxiety, depression, OCD, ASD and ADHD. This particular client has ASD with PDA, but I haven’t seen a lot of PDA in clinic.
Thank you for your advice!
Molly
You’re welcome – please do keep us posted on how things go with this client
And thanks for the work you do in this area! It’s so needed!