What medications help PDAers & what if taking meds is outside the person's safe circle?
- 18 hours ago
- 16 min read
‼️ I am not a doctor & this is not medical advice. ALWAYS talk to YOUR doctor before stopping or starting any medication. I am speaking from personal experience, from my coaching practice, and from stories in The PDA Safe Circle® community.
Up top, when I talk about medication and PDA / Autism, I am not talking about "treating" PDA or "treating" Autism. PDAers and Autistic people have strengths and vulnerabilities, like anyone. Our brains are PDA and Autistic. Meds can't and shouldn't aim to change that. But we can treat the distress levels of the particular PDAer.
Preamble: A note on medical conditions and PDA
PDA dysregulation and distress levels can be highly exacerbated if the person also has underlying inflammatory conditions. These may get missed by conventional medicine or routine blood work. When clients come to me in intense distress and life style shifts don't make a dent, I learned from Amanda Diekman to consider underlying medical conditions. Many of these conditions can be helped by supplements, medications, body work, or other interventions.
If you have the means (and your PDAer has the nervous system capacity) to do blood work, a urine test, or a stool sample with a holistic-minded healthcare professional, that can be really helpful.
Underlying medical conditions that exacerbate PDA dysregulation (let me know which ones I'm missing):
MCAS (Mast Cell Activation Syndrome)
CIRS (Chronic Inflammatory Response Syndrome, from mold poisoning)
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
POTS (Postural orthostatic tachycardia syndrome)
EDS (Ehler-Danlos Syndrome)
Dysautonomia
PANS/PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders with Streptococcal Infestions)
Candida (yeast) infestation or systemic immune reactivity to candida
Lyme Disease
Long covid
Allergies
GI dysfunction or mircobiome imbalances
Other autoimmune disease
Any other underlying inflammation or chronic pain
Vitamin and nutrient deficiencies
Why do medications support so many PDAers?
For PDAers to be able to meet our needs and thrive, we need to feel SAFE in bodies that are wired with a hyperactive threat response. While our outward behavior is what causes problems for other people, it's the sensation of threat in our bodies that causes our distress.
So it's great if we can find a drug or combination of drugs that lower our inner experience of threat response – which is a felt sense of anxiety in the body.
PDAers seem to have imbalances or atypical processing in our neurotransmitters, including dopamine. While every person's brain chemistry is unique and there is no one-size-fits-all medication support for PDA, there is a clear pattern that external supports for our brain chemistry can go a long way to decreasing our threat response, widening our safe circle, and allowing us to feel happy and thrive.
It's important to remember that a threat response can look obvious from the outside (fight, flight, flood responses) or be subtle or hidden to outside observers (freeze, flop, fawn responses). For a PDAer to thrive, we need to feel safe. While our outward behavior is what causes problems for other people, it's the sensation of threat in our bodies that causes our distress.
So, it's great if we can find a drug or combination of drugs that lower our felt threat response and experience of hypervigilance.
While PDA is not the same as general anxiety, anxiety medications can be life changing for PDAers as they seem to support a lowered threat response and lowered hypervigilance. Many PDAers I know are on one or more of the classes of medications I list below and find them helpful or even transformative. However, everyone is different and you should always talk to your doctor before starting or stopping any medication.
SSRI/SNRIs such as Prozac, Zoloft, Lexapro and Effexor.
Common class of drugs to try first. These are often the first medications a doctor will prescribe for general anxiety, and in my experience, they are often a good place to start for PDAers looking for supportive medication.
Start low. PDAers can be quite sensitive to medications, and some of us respond best to subclinical doses of SSRIs/SNRIs. Most prescribers won't know this, so you can advocate to your prescriber to start you or your child on a very low dose and increase once you know how the small dose feels. For instance, most people start Prozac at 10mg and go up from there, but some PDAers feel effects at 5mg or even 2.5mg and feel best staying there. Others need to go up to a high dose (my son has been on 40mg of Prozac since he was five! But we started him on 2.5mg).
SSRI/SNRIs are not a viable option for everyone. Some young children can have manic reactions to them, especially at higher doses. Some children live in countries where it is close to impossible to get a prescription for any anxiety medication for children. Some adults have tried many and nothing feels good.
Alpha and beta blockers such as Guanfacine, Propranolol, and Clonidine.
These classes of medications slow heart rate and lower blood pressure, thereby lowering some of the physiological symptoms of the threat response. Many PDAers find them helpful in combination with an SSRI/SNRI or on their own. My son and I are both on a daily combination of an SSRI/SNRI + Propranolol.
Propranolol is not usually prescribed for kids' anxiety, but we're using it and loving it. I asked my doctor for it because it works quickly, you only have to take it once a day, and if you're taking it for anxiety skipping doses is fine. It's helping my kiddo's safe circle expand beautifully.
Clonidine is often prescribed to help people sleep, but can also help calm the threat response sensation overall. Notably, it can come as a patch that goes on the skin and is replaced every seven days.
Guanfacine is often prescribed as a non-stimulant option for ADHD. In my community, many PDAers have had negative experiences with it, but I don't know if that is representative or coincidence.
Antihistamines, such as Hydroxyzine
Hydroxyzine is a short-term "rescue medication" considered safe for children that can help with intense anxiety. For instance, a pediatrician might prescribe it for a child who has high anxiety or PDA threat response when faced with a stressor like a doctor's appointment or dentist. Like other antihistamines, it can make you sleepy.
Benzodiazepines - for example Ativan, Xanax, Klonopin.
"Benzos" are usually prescribed for emergencies or very short-term use. I have a prescription for Ativan that I will take on top of my daily SSRI+ beta blocker if I am really triggered or having a panic attack. I asked my kid's prescribing doctor for an emergency prescription of Ativan to have on hand as well. Some can come in Orally Dissolving Tablets.
Cannabinoids
Some PDAers use the compounds in marijuana medicinally. These compounds include the familiar THC, as well as CBD and CBG, which are not psychotropic (i.e. they don't make you high). There are certified cannabis coaches who specialize in supporting a PDAer/family in safe and effective use of cannabinoids to support the nervous system.
Over-the-counter amino acids, vitamins, and minerals:
Over-the-counter supplements can have a noticeable and sometimes transformative effect on individual PDAers' lives. Most of these are naturally occurring substances in our bodies, but at least some PDAers seem to be deficient. Again, everyone's brain chemistry is different… so there is no one-size-fits-all.
As with medications, I have seen best results when people start at a very low dose and increase slowly if that low dose is well tolerated.
I personally recommend the products on BrainMD, as I have tried their products and found them to be effective, and their website is easy to browse. (They are not sponsored.)
ChatGPT helped write the following list:
5-HTP (5-Hydroxytryptophan) – A compound the body uses to make serotonin; some people report improvements in mood, emotional regulation, or sleep, while others find it causes vivid dreams or digestive upset.
GABA – A neurotransmitter associated with the brain's calming pathways; some people describe feeling more relaxed or less "amped up."
Glycine – An amino acid that may support relaxation and sleep quality, often described as helping the body feel more settled.
L-Glutamine – An amino acid that supports gut and brain function; some people report steadier energy and resilience, while others notice little effect.
L-Theanine – A compound that may promote a calm, focused state without causing significant drowsiness.
L-Tyrosine – An amino acid used to make dopamine and norepinephrine; some people experience improved focus, motivation, and mental energy, while others may find it feels activating.
Magnesium Glycinate – A well-absorbed form of magnesium often used to support muscle relaxation, sleep, and nervous system regulation.
NAC (N-acetylcysteine) – A compound that supports antioxidant production and brain health; some people report reduced irritability or fewer repetitive thought loops.
Taurine – An amino acid involved in nervous system regulation; some people experience a greater sense of calm or reduced physical tension.
Vitamin B6 – A vitamin used to make important brain chemicals such as serotonin and dopamine, supporting overall nervous system function.
Vitamin D – A vitamin involved in immune health, mood regulation, and many body systems; low levels can sometimes contribute to fatigue or low mood.
Neurolink: I often tell clients and community members about Neurolink, which is a supplement combination made by BrainMD that supports dopamine and serotonin:
Ingredients: L-Tyrosine, Taurine, L-Glutamine, B6, and 5-HTP
Neurolink has 5-HTP in it, so if you're on other serotonin boosting meds, do your research about risks of serotonin syndrome to make an informed choice. DM me if you'd like more info about how we safely added Neurolink to Kiddo's meds when he was already on the highest possible dose of Prozac.
Taking Neurolink was transformative for Kiddo, who takes it on top of Prozac and propranolol. Many clients and community members report it has been helpful. Our personal experience suggests starting low, and if you feel neutral or good then slowly increase. Most people feel effects that day or the next if the dose is high enough.
NeuroLink is sold as an orange flavored powder, a white slightly bitter poweder, OR as capsules you can swallow, with white very mildly bitter powder inside.
Other drugs that help some PDA people - and a word of caution:
Many doctors are not familiar with PDA yet, and even those who are familiar with it do not necessarily see the mechanism of the disability as an overactive threat response. This means some doctors are seeing problematic behaviors, and are prescribing stimulants, mood stabilizers, and antipsychotics to PDAers to try and treat the behavior.
In general, I coach people to talk to their doctor about trying SSRIs/SSNIs as a first course of action, and see what happens before trying mood stabilizers, antipsychotics, or stimulants. But everyone is unique, and only you can know what you're comfortable trying and when.
Mood stabilizers and antipsychotics. There are PDAers for whom a mood stabilizer (like Lithium or Lamictal) or an antipsychotic (like Abilify or Risperidone) decreases the external fight response and irritation, which can be helpful for individuals and their families. I have heard a bunch of bad stories but also some good ones, usually in combination with drugs that lower anxiety. For some PDAers, one of these drugs can be life-changing.
Stimulant and non-stimulant ADHD meds. There are PDAers who are also ADHD and for some of them stimulants can be helpful in calming the body and the mind. Stimulants may increase PDA anxiety, however, so be sure to watch for that if you try them. This can especially be a risk for PDA kids who are misdiagnosed as ADHD. (I have heard from multiple parents reporting trips to the ER after their PDA child started stimulants - but they might be right for you if your PDAer is also ADHD, so talk to your doctor. Note that there are also medications that support ADHDers and are non-stimulants, such as Vyvance).
Stimulants, anti-psychotics and mood stabilizers may decrease the intensity of the external expression of threat response - such as anger or aggression. But they do not lower the felt sense of anxiety in most people.
That's not what they are designed to do. So even if they help to an extent, they are often not enough – and for many PDAers they are not necessary at all – to support a PDAer. For PDAers to be able to engage more in life, we need to widen our nervous system capacity. This can only happen when we feel safe inside our bodies - not when we merely act calmer from the outside.
If your doctor has been focusing on treating outward behaviors only, you can say: “I’m learning more about PDA, and I believe the behaviors we’re seeing are indicators of high anxiety and and an overactive threat response. I'd like to try a medication that treats anxiety.”
The Matthews Protocol
The Matthews Protocol, attributed to Dan Matthews, is an off-label medication combination aimed at reducing severe irritability, rage episodes, and explosive behavior. It's a two-medication regimen with non-antipsychotic drugs that targets the neurological drivers of dysregulation. It most commonly combines: Amantadine and Oxcarbazepine (Trileptal). I have heard of it but haven't worked with anyone who has tried it.
For some people, the protocol truly reduces threat response and increases felt safety, dopamine availability, and prefrontal cortex access. But for others it shifts the threat response from fight to internal flop or freeze. So just keep an eye out if you try it!
Medication doesn't mean we stop other accommodations. It is just a very high leverage accommodation to add.
Tips and Caveats about Starting Medication
Finding an effective anxiety med or an effective combination of meds can take some trial and error.
Many PDAers I support who are doing well are on more than one psychiatric medication. This includes me and my son.
Some PDAers/parents do GeneSight which tests your/your child's DNA and makes predictions about which psychiatric drugs will be effective. I have heard mixed stories about how well the results match up to lived experience.
Advocate to start on a low dose, especially if you/your kid are very sensitive to meds amd body sensations. Some PDAers do best on subclinical doses of meds.
If a med seems to help but just a little, ask your doc about increasing dose.
Sometimes meds just fall into the background of our routine, and we forget to actually assess their impact on our life. If you/your kid have been on meds for a while but you're not seeing substantial and meaningful positive change, talk to your doctor about an increase or a change in meds.
If your prescriber is adding one med on top of another without being clear on what effects the current medications are having, you can advocate to slow down and try weaning off of a current medication to see if it's doing anything.
APPLYING THE PDA SAFE CIRCLE™ APPROACH TO SUPPORT PDAers WHO RESIST TAKING MEDICATION
This is an abbreviated explanation that uses terminology from The PDA Safe Circle™. For more detailed support and a more in-depth introduction to The PDA Safe Circle™, reach out to me for private coaching or grab your free trial week in The PDA Safe Circle community.
ELEMENT 1: Trust the PDAer
We start by inventorying the PDAer's strengths. This helps us trust the PDAer's process, and remember they are a whole person and their demand avoidance is only an expression of nervous system activation. We ground ourselves in the fact that this person is a human being who wants to be well.
ELEMENT 2: See the Situation Clearly
This step invites us to hypothesize the root of the PDAer's struggles. PDAers have highly sensitive autonomic nervous systems that easily go into fight/flight/freeze/fawn when faced with a lack of autonomy, control, or social equality. If this is happening around meds, we need to recognize that demand avoidance is a natural result of being in an autonomic nervous system state of fight/flight/freeze in which the body is prioritizing survival. A person will not be able to accept meds if they are getting triggered by you and/or the medication.
Therefore, instead of asking “How do I get my loved one to take this medication?” we ask, “What changes can I make so my loved one eventually feels safe enough to take this med?”
ELEMENT 3: Assess the PDAer's Nervous System Capacity: Sketch The Safe Circle
In The PDA Safe Circle™ we never look at specific demand avoidance in a vacuum. We see it as an expression of low nervous system capacity.
So first, sketch your PDAer's safe circle. This is an easy yet powerful exercise that gives you a visual sense of your PDAer's nervous system and whether there is room for something new or hard, like medications.
The slide invites the viewer to consider different categories of experiences, including people, foods, places, activities, basic needs (such as eating, sleeping, bathing, toileting, tooth brushing, and taking medicine), secondary needs (such as wearing clothes, leaving the house, and socializing outside immediate family), and any other relevant experiences. The main graphic is a large circle labeled “Feels safe or fine.” This represents people, activities, places, foods, or needs that generally feel manageable and do not trigger significant nervous system stress. Part of the circle's border is intentionally open and labeled “Sometimes feels safe, sometimes doesn’t.” This represents experiences that are inconsistent: they may feel safe under some circumstances but difficult or dysregulating under others. Next to the circle is a heart labeled “I like it but my body gets stressed or dysregulated.” This represents experiences the person genuinely enjoys or values but that nevertheless overwhelm, exhaust, or dysregulate their nervous system.
Outside these areas is a final category described in text: “My body feels scared, angry, stuck, jittery, unsafe, or just ‘I can’t’ or ‘No!’ if I try it.” This represents experiences that consistently trigger a strong threat response or feel inaccessible. The overall purpose of the visual is to help a person map experiences according to how their nervous system responds, rather than whether the activity is objectively good, necessary, enjoyable, or expected by others.
ELEMENT 4: Create Safety: Allow the Circle to Widen
If there isn't room for medication, you can draw a demand diagram to suss out how you might create more safety and make a little room in the safe circle so that we can bridge medications in.
A demand diagram visualizes all the stressors in your PDAer's life as arrows jabbing at the safe circle. Which of these arrows can you mitigate or remove?
In The PDA Safe Circle™ I offer an extensive menu of what we can provide, allow, and refrain from doing that will help allow a PDAer's safe circle to widen.
Next, you can draw a mini-demand diagram specifically around taking meds. Get granular about what might be too hard.
Maybe the meds taste bad.
Maybe they are bored with the flavor (if a liquid).
Maybe it’s uncomfortable to swallow the pill.
Maybe they are having side effects from the med.
Maybe the med isn’t helping them, & they know that before you as the parent do.
Maybe the med routine is interrupting a preferred activity.
Maybe they think of meds as something they don’t do.
Maybe the PDAer senses a loss of autonomy, control, or social equality in relationship to the med or the parent.
How might you mitigate each of these demands?
If the meds taste bad, try increasing the amount of juice you’re putting the dose in.
If they’re bored with the flavor, try another juice or ask the pharmacist for a new flavor (some liquid meds can do this).
If they are uneasy swallowing the pill, try cutting pills in half or asking for a different mg (i.e. Two 10mg pills instead of one 20mg pill). Try swallowing it in whipped cream.
If pills and liquid are both hard (fellow ARFID parents I see you!), see if you can find a compounding pharmacy that can safely make a patch or cream application of the medication.
If they’re having side effects, ask doctor whether what they are experiencing is likely to end in a week or not. If not, this may not be the right med for them. I have heard many stories of PDA kids on stimulants that make them feel terrible. So they resist the med. Which makes perfect sense.
If the med isn’t helping their threat response, talk to doc to try a new one or up the dose. Kids are wise, and PDAers tend to be very sensitive and intuitive. Again, lean into trusting your kid and their intuition about their body.
If the med routine is interrupting a preferred activity, try changing the moment you hand them the med.
If meds are a small power struggle but generally kiddo takes them, try removing all verbal interaction from the situation. I place my son’s OJ/Prozac in his hand or next to him where he can see it. No words. No interruption to his activity. As you hand them the med, signal safety “mammal to mammal” as Casey Ehrlich says. Get lower than them. Soften your face. Relax your body before you approach them with the med.
For older children or teens, you might "strew" the medication on a counter where they will see it. Or just put it on a plate next to a meal.
But some PDAers can't take meds because they have simply deemed medication outside their safe circle. They are a person who doesn’t take meds. For these PDAers, we focus on allowing the safe circle to widen, and give the idea some space. You might put the meds away and not mention them at all for several months.
ELEMENT 5: Provide Opportunities: Bridge Medications into the Safe Circle
If you've been in a power struggle about medication BUT you have assessed your loved one's safe circle and you think they have capacity to try medication, then you can try bridging meds into the safe circle with language like the lines I have below. Notice that this language is declarative - it neither makes demands nor asks questions. It emphasizes your loved ones' autonomy, control, and status as a trustworthy person who can make decisions about their life. It also offers relevant information. For older kids, consider writing and strewing a note to avoid the demand of social interaction. Leave the meds with the note.
“I’m sorry we pressured you to take medication. I know it is fundamentally your choice. I trust that you will make the best choice for you. If you change your mind, here’s the meds to try.”
“Here’s a prescription for X. A lot of people with similar brains to yours say it has helped them be able to do the things they love. It is totally your choice whether to try it. If you try it & don’t like it, we can always try another one.”
“I’ve really learned over the past year to trust your body and your limits. I also know that some of the limits of your nervous system have been frustrating to you lately. A lot of people take medication to support them being able to do more of what they love. This medication often helps. If you want to try, it’s here.”
"We thought it was only fair for you to have the option of taking medication because other people with similar brains do. You deserve to have the same treatment as they do."
I introduced Prozac to my burned-out PDA 5yo like this: “You know how I take anxiety medicine to help me live my best life? Papa & I got you some, too. We think this will help you feel more relaxed & less anxious. Now we both take anxiety medicine!"
ELEMENT 6: Accept Disability & Difference: Embrace the Safe Circle as it is, Challenge Society as it is
There may be a while where you are living with a PDAer who will not accept medication or is on the wrong medication or an ineffective dose. This is very hard for everyone. When this happens, we lean on whatever supports we can muster for everyone involved. We accept that this is the manifestation of the PDA disability in this moment, and we focus on all the accommodations that will help to widen the safe circle. The idea is that with a wider safe circle (i.e. nervous system capacity) the PDAer will have the room in their capacity to bridge in new things that will help them thrive, like meds. And if they can't, we make the boundaries we need to keep ourselves safe and sane, especially for older teens and adults.
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