‼️ 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 lived experience, and from gathered stories on social media and in my coaching practice.
Up top, when I talk about medication and PDA Autism, I am not talking about "treating" PDA or "treating" Autism. PDA Autistic people have strengths and vulnerabilities, like anyone. Our brains are PDA and Autistic. Meds can't and shouldn't 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
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders with Streptococcal Infestions)
Candida (yeast) infestation or systemic immune reactivity to candida
Lyme Disease
Long covid
Allergies
Other autoimmune disease
Any other underlying inflammation or chronic pain
Vitamin and nutrient deficiencies
PART 1: WHAT MEDICATIONS SUPPORT PDA AUTISTIC PEOPLE?
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.
Many PDAers I know are on one or more of these, 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. Nothing here is medical advice, as I say at the top. Just sharing info. There are other classes of anxiety meds I am not familiar with so please please ask your doctor.
SSRI/SNRIs such as Prozac, Zoloft, Lexapro, Effexor, and many others. These are often the first thing a doctor will prescribe for anxiety. For PDAers who find one that works, it's life changing. However, for various reasons, 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 works.
Alpha and beta blockers - for example: Guanfacine, Propranolol, and Clonidine. These medications slow heart rate and lower blood pressure, thereby treating some of the physiological symptoms of the threat response. Many PDAers find them helpful in combination with an SSRI/SNRI. Or you can talk to your doctor about trying one on its own if you can't find a more typical anxiety drug that works for you. My son and I are both on a daily combination of an SSRI/SNRI + Propranolol. (Propranolol is not usually prescribed for kids' anxiety, but 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).
Antihistamines - for example Hydroxycine. This is a short term med that can help with intense anxiety. For instance, a pediatrician might prescribe it for kids who need extra support on top of a daily med, like for a doctor's appointment or dentist. It often makes you sleepy.
Benzodiazepines - for example Ativan, Xanax, Klonopin. These 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.
Non-pharmaceuticals that can help calm the nervous system include but aren't limited to: CBD oil, magnesium, omega-3, certain probiotics, Ashwaganda, Shatavarri, GABA, rhodioloa, and getting enough Vitamin D (I take 5,000iu per day!).
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.
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 – or 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.
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).
There are PDAers for whom mood stabilizers or antipsychotics decrease 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.
The bottom line is, I have seen remarkable shifts in PDAers who get on the right med(s).
Medication doesn't mean we stop other accommodations. It is just a very high leverage accommodation to add.
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 an overactive threat response. I'd like to try a medication that treats anxiety.”
Tips and Caveats about Starting Medication
Finding an effective anxiety med or an effective combination of meds can take some trial and error. This can be hard. 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 & body sensations.
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 change in the threat response, talk to your doctor about an increase or a change in meds.
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 and/or join my mailing list so you can join when I launch the course and community!
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.
See the Situation Clearly. 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 kiddo 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 child to take this medication?” we ask, “What changes can I make so my child feels safe enough to take this med?”
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.
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.
Third, 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 thatt 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.
Provide Opportunities: Bridge Medications into the Safe Circle
If you've been in a power struggle about medication BUT you have assessed your child'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 this.
Notice that this language is declarative - it neither makes demands nor asks questions. It emphasizes their autonomy, their control, and their status as a trustworthy person who can make decisions about their life. It also offers relevant information. For older kids, consider writing & 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 & 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!"
7. 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.
The PDA Safe Circle™ is launching as an app, course, and community of practice in late January 2025...
Imagine belonging to a community of PDAers, family members, & allies where everyone learns the powerful & simple approach of The PDA Safe Circle™.
Imagine being welcome in regular group coaching that I lead, but also opting in to intimate, ongoing, interest-based group(s) for peer coaching.
Imagine that, by joining, you are supporting systemic change to make the world safer for PDAers.
Imagine feeling empowered & connected.
Imagine staying as long as you want to.
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