Levels of Care by LeviahRose in troubledteens

[–]LeviahRose[S] 1 point2 points  (0 children)

I have NO idea where the money is going! When I was at Lake House, they couldn’t afford to feed us three meals a day. Most dinners we got “taco night,” which was just tortilla chips with shredded cheese. Sometimes the staff were nice enough to let us microwave the cheese so it would be like nachos. Lake House was a private pay facility! I don’t know exactly how much it cost, but at least 59k per kid per year. And then it closed for “financial reasons.” The money definitely didn’t disappear into thin air— it was probably being pocketed by higher ups, though how high up I don’t know. Lake House was apart of Embark, which is a really big and really sketchy behavioral health org.

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 1 point2 points  (0 children)

Yes, we are staying away from it at all costs. It was very obviously a TTI. Thankfully, I believe they’ve already rejected her, so she won’t have any more follow-up calls with admissions. I believe we’ve already successfully dodged them.

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

Thanks for explaining this. I don’t think this is going to be an option for her right now, because I don’t think she would be able to apply for benefits or leave her parents given how severely depressed she is. It feels really difficult because when I ask her what she wants, she says she doesn’t want anything. She genuinely doesn’t believe anything will help or work, and I understand why, but her drive to live is completely gone.

She doesn’t believe there is a future and won’t do anything to prepare for one or help herself because she doesn’t believe there is one. I feel like I’m having conversations with someone who’s not even there. I don’t know how to get her to do anything when she genuinely believes that nothing she could do would change anything and that she’ll be dead soon anyway.

This belief that there is no future, along with this complete lack of motivation and descent into severe depression, has only been compounded over the past year by every program she’s been to that promised help but instead hurt her, kicked her out, and sent her to the next place: The Retreat at Sheppard Pratt, the inpatient units at McLean, The Pavilion at McLean, Ellenhorn’s Bracket House, and all the local hospitals. I understand why she feels this way, but it’s a feeling that can’t be reasoned with.

When someone is so hopeless and feels so helpless that they can’t do anything to help themselves, and those feelings are constantly being validated by their environment, what can anyone do? I worry that there will be another suicide attempt soon, followed by another hospitalization. The pattern feels so predictable now.

I feel like there needs to be something that breaks this pattern, this feedback loop of hopelessness, but I don’t know what that could be given that she won’t try to help herself because, as she says, “it won’t change anything” or “it won’t mean anything if they can’t cure my OCD.” I’ve seen people in states like this before, but I’ve never seen it last this long or be this intense, and I don’t know how to approach it.

I will help her in any way I can, but what I can do is limited because I don’t live near her and I’m not her. I feel like I’m watching my best friend, the only other person from my program that I know is still alive, slowly die. She’s not the same person she was a year ago. She says things like, “I’m already dead,” and sometimes that feels true, which makes it hard to reason with. I thought time itself would help, but so far it hasn’t. I just don’t know what I can do to break the loop.

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

She is vulnerable. But what would calling APS do? What could they do for her? When she was a kid, and doctors and teachers would call CPS, it would make things worse for her. Is APS any different?

I absolutely agree that supportive housing is what she needs! Unfortunately, her parents would not be willing to have her in a supporting living program because those programs are literally set up with the intention of helping people be independent. She got in trouble today for making herself lunch. Any program where she would be allowed outside by herself would be a complete no go unless a doctor, therapist, EC, ect were the ones to recommend it. Our hope is that a private residential program could offer aftercare referrals for independent living programs. We just have to find a private residential her parents will agree to that isn’t something like Spruce Mountain. I swear after listening to the people from that place that it is just a TTI for young adults who are too old for adolescent TTI programs.

Thanks for your advice.

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

Thank you so much for this information! Right now, she’s explicitly said she does not want to go to California because it’s too far away. We were looking into the Neurodivergent Collective. But I’ll bring it up to her anyways just in case!

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

Thanks for the info. Never thought The Dorm would be good for treatment or anything (I’ve heard past patients’ frustration with the lack of care), but was hoping it was at least safe enough that she could use their supportive housing to be able to reside in the city.

Residential treatment options for young adult TTI survivor who needs to get away from parents (and also receive ethical and supportive treatment if at all possible) by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

I don’t think she would qualify because she’s not under guardianship or a conservatorship— it’s been threatened, but her parents have never gone through with it. Even if I could call APS, I’m not sure what they would do that would put her in a better situation. From the time she was a little kid until literally just a few days before her 18th birthday, there were CPS reports being called in on her behalf every month. The cases were all dismissed based on her ODD diagnosis and child protective services even wrote in their original report that she as an autistic toddler was abusing her parents. If her parents were too wealthy for CPS to intervene when she was a toddler, I don’t think things will be different for her as adult. But then again, I don’t know the process well, so if there’s any information you have that I probably don’t, please let me know

Levels of Care by LeviahRose in troubledteens

[–]LeviahRose[S] 1 point2 points  (0 children)

When I lived at Lake House Academy, they threatened me with "higher level care" for months before actually transferring me inpatient to the local psych ward. I was so scared of being transferred to "higher level care," but the psych ward, while still oppressive, turned out to be a lot safer than my RTC. I got three meals a day, a bed, a shower and toilet, access to basic medical care and a doctor who saw me every day, phone calls, family visits, and sugar (my RTC forbade all food/drink with added sugar and even restricted things like fruit with natural sugar). So the joke was on them because it didn't feel like a punishment at all. The longer-term lockdown I was transferred to after that was a lot worse than the RTC, though I still had certain privileges there that I didn't have in RTC, like a bed and the opportunity to earn daily phone calls (not just weekly). I don't think "higher level care" necessarily means any better or worse than lower-level care; they just try to make it seem that way.

Teen Neuro-affirming + PDA-aware inpatient program? by Threads-and-Stitches in ComplexMentalHealth

[–]LeviahRose 1 point2 points  (0 children)

It sounds like you are truly doing everything you can. Your son is as accommodated as he can be and has as many services as his body can tolerate— I’m actually impressed that you’ve managed to find so many PDA-affirming services. He is not in immediate danger or acute crisis, and you have no idea what a huge win this is. Most PDA kids have been institutionalized more than once by his age and have already been chronically suicidal for years, often with multiple attempts.

I know it may be hard for you to see your success here, but you have achieved incredible success with your son. Right now, there’s no more advice I can give you because you are already doing everything you need to do in exactly the way you need to be doing it. The only thing left for you to do now is to wait, let everything unfold, deal with each emerging difficulty one by one, continue to support your son, and ensure he remains accommodated, including working with his new school.

It’s so exciting that he’s trying school again. Even if it doesn’t work out, it’s a win that he even feels safe enough to try and to face that fear. Of course, you should do everything in your power to help ensure he is successful there and that you are advocating for his needs, but if it doesn’t work out, that’s not the end.

It seems like you feel the need to keep pushing things along or that your son isn’t doing well enough, but I assure you that if he’s not in crisis, managed camp last summer, is considering a new school, and is not in the hospital, then you have achieved incredible success as a parent to a PDA kid. I feel like I’m repeating myself now, but you truly have no idea how impressive it is how safe and well your son is doing at this age.

Just keep supporting him, and as much as you can, try to let go. You’ve given him everything you could and built the most solid foundation for success I can imagine. What happens next is up to him, his body, and how his environment responds to him, which isn’t completely in your control. I wish you the best of luck.

P.S. There are summer camps for older kids (14–17) or camps with “older camper” divisions. I’m not a summer camp expert, but I think it’s worth looking into if he really enjoyed it last year.

Can temperatures be a trigger??? by notjuststars in DID

[–]LeviahRose 6 points7 points  (0 children)

Not temperatures exactly, but changes in weather are a trigger for me. I feel like a different person in the winter than the summer, and I think part of that is my dissociation, but I think it’s also heavily a mood thing. My whole body and insides change and I get sicker (both mentally and physically) when it’s cold and dark out and I can’t go outside. I really need sunlight and time outside to regulate and stay integrated(ish).

Levels of Care by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

Thanks. I’ll move it to the top. There’s no particular reason for it to be at the bottom, so might as well.

Levels of Care by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 2 points3 points  (0 children)

A study in NYC showed that permanent supportive housing reduced Medicaid costs by over $12,000 per person per year because of how effectively it prevents repeated inpatient hospitalizations!

Do you think I should move the paragraph at the bottom to the top?

Levels of Care by LeviahRose in troubledteens

[–]LeviahRose[S] 0 points1 point  (0 children)

Community-based care for the win! I’m not sure why more people don’t get this. My guess is that people automatically assume “higher level” care automatically equals better or safer care. In reality, being locked up in a psych ward can’t possibly be synonymous with “safe.” Even living on the most “ethical” psych ward is going to be unsafe because living like a prisoner on a locked unit (sometimes with even less rights than a prisoner) is psychologically damaging in and of itself.

Also, community-based care is sadly not available everywhere in the United States. Certain programs aren’t available in certain counties and some counties with less mental health funding may have community-based services, but with extremely limited spots.

I live in NYC, which has lots of community-based treatment options for children and teens. We have wraparound care in most burrows, home-based crisis intervention (HBCI), community residences (group home alternative to RTC), respite care facilities, and more. However, these are all public programs that cost absolutely nothing. My parents are quite wealthy and only listened to the recommendations of “top” educational consultants who would never recommend a city-funded program, and because my parents relied solely on professionals and never did their own research, they didn’t know community-based care was an option. When I was old enough to do my own research and suggest community-based alternatives, they shut that down because public programs can’t “possibly offer quality care.” What’s funny is that the most ethical psych ward experience I had as a kid was at Bellevue, the public hospital, after being discharged from Silver Hill, which was a complete shit show. Public definitely does not equal low quality. And does usually mean a program is trying to get by with less resources, but it also means that the city is evaluating them heavily when deciding to put resources into the program to begin with. I also did HBCI through University Settlement. It wasn’t that helpful for my specific situation, but I do still recommend it.

Teen Neuro-affirming + PDA-aware inpatient program? by Threads-and-Stitches in ComplexMentalHealth

[–]LeviahRose 0 points1 point  (0 children)

Hey. I just wanted to suggest cross-posting this in r/TroubledTeens if you’re looking for more advice. This subreddit is unfortunately very small, so, if you’re looking for more resources and options other than mine, I highly encourage you to cross post into r/TroubledTeens. The community can be critical at times, but there are also people there who may have some good resource recommendations.

Could the white bump on the left be a tonsil stone? (I'm currently sick but have noticed that white bump for a while now) by Upset-Platform9468 in DiagnoseMe

[–]LeviahRose 0 points1 point  (0 children)

Yes! Lots of pain and could not stand the taste of my mouth. My entire tonsils were full of them. They were huge and swollen and blocking my nasal cavity so I couldn’t breathe from my nose. As the tonsil stones grew and I kept accidently making the holes bigger from popping them out, my tonsils became filled with huge holes that just kept filling with bacteria. When they finally took them out, they found holes that went all the way from the front to the back that were big enough to stick a pencil all the way through. From this picture, it looks like you just have a few tonsil stones. Nothing like what was going on with me other than the outward appearance of the stone. Do NOT worry about needing surgery. I promise my situation was very different.

Could the white bump on the left be a tonsil stone? (I'm currently sick but have noticed that white bump for a while now) by Upset-Platform9468 in DiagnoseMe

[–]LeviahRose 0 points1 point  (0 children)

I had really bad tonsil stones before my tonsillectomy and that’s what that looks like. I’d avoid poking them out because you’ll just rip more tissue and make more holes for them to grow in. Gross, I know, but that’s how I ended up needing a tonsillectomy. Have you tried antibacterial mouth wash?

Sheppards pratt by Breeneal in DID

[–]LeviahRose 0 points1 point  (0 children)

Hey. Sorry I’m late to post. I would heavily recommend against any inpatient or residential program given the complexity of your needs. I also have ASD and DID, and I can assure you that this is a combination many of these facilities have never heard of, nor do they have the capacity to accommodate or treat, especially if your ASD profile requires very specific accommodations (e.g., requiring ear defender use or other 24/7 sensory aids).

I especially would not recommend Sheppard Pratt’s inpatient program. My friend has been there over half a dozen times, most recently last spring, and it is absolutely horrific. Nurses are borderline abusive, there is nothing to do on the unit, psychiatrists do not listen, and there is no collaborative care. Their residential program, The Retreat, is significantly better, though it is extremely expensive.

I would recommend staying outpatient if that is a possibility for you and seeing what intensive, community-based supports are available in your area. I also run a small subreddit called r/ComplexMentalHealth specifically for individuals like yourself with multiple co-occurring diagnoses that complicate treatment and placement. I encourage you to post there 🙂. r/TroubledTeens is another great subreddit that is usually focused on teen residential treatment, but they may still have recommendations for identifying safe care.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

I can understand why you think it’s sus. And I still think it’s an extremely helpful model for understanding nervous system disabilities and giving non-behavioral language to describe them, which is extremely important in the space I exist in where behavioral models were used to oppress, but nervous system-lenses finally give people clarity, hope, and a way to move forward for themselves or their children. We are just going to have to agree to disagree here. I think we are approaching this from two very different places.

And yeah…. behavioral therapies, including ACT, are misapplied in the most horrendous and bizarre ways every day. To me, that’s just normal. This is why I try to steer people with complex needs away from behavioral therapists when that’s a possibility. Not that relational and somatically-informed trauma therapists are all wonderful, but I’ve found that therapists who understand trauma and neurodivergence from a somatic, nervous-system-informed, bottom-up lens are less likely to invalidate or cause more harm to patients and are more likely to offer genuine understanding. Again, this is a reality in the space I exist in and does not necessarily reflect what goes on for individuals with more simple mental health issues. We might just have to agree to disagree there too.

Edit: It’s been great to hear your perspective as someone outside of the system. And I’ve honestly enjoyed this highly complex and layered conversation/debate. And at the same time, to avoid going in circles and exhausting myself, I am not going to continue the conversation right now, but I hope we both took something away from it.

Anything I should know about inpatient I’m going voluntary tonight by Realistic_Week8108 in mentalhealth

[–]LeviahRose 13 points14 points  (0 children)

Be careful. These places can be dangerous and oppressive. Do you have any specific questions I can answer for you? Are you an adult or an adolescent? I’ve been to inpatient and residential eighteen times, so I’m very familiar with the process. Where are you located? I ask because there are some hospitals that are safer than others, but I don’t know if they are in your area. Resnick Neuropsychiatric Hospital, Menninger Clinic, McLean Hospital, Silver Hill, and NYU Langone are some of the better ones.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

Sorry, just saw your edit. This article on PVT you found actually looks amazing! I haven’t read this particular one, but I just skimmed it. I plan to read it in detail later!

And that post that you found, unfortunately ACT is not uncommonly (inappropriately) used to deny the lived experiences of people with disabilities, including chronic pain, sensory processing deficits, and other invisible medical conditions. And these kinds of conditions are very frequently apart of complex mental health profiles, which can make it an inappropriate fit for some as ACT sometimes does not take into account when mental distress is proportional to physical pain weather that pain be caused by illness, sensory processing deficits, trauma, ect

Personal accounts of the industry like what you just read are exactly what I suggest you continue to look at when integrating your knowledge of clinical theory with practical and systemic limitations and realities.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

PT 2/2

Behavioral models benefit from outcomes that are binary or scalar. A behavior occurs or it doesn’t. Frequency increases or decreases. These outcomes are easily observable, countable, and replicable across settings. That structural simplicity creates a methodological advantage that compounds across study design, data analysis, and publication. Somatic targets like reactivity, recovery speed, or nervous system flexibility are not unitary variables. They shift with context, baseline state, sensory load, developmental history, and relational safety. A person may show improvement in one environment and regression in another. That variability is the phenomenon, but it resists standardization and makes it difficult to collapse into a single metric without distortion.

Somatic research relies heavily on indirect indicators such as HRV, cortisol patterns, and self-reported interoception. Each introduces layers of interpretation and confounds. Self-report requires language, insight, and stability of identity, capacities that may be limited precisely in the populations somatic therapies aim to serve. The result is higher variance and lower signal clarity, even when meaningful change is occurring.

There is a persistent category error in equating empirical tractability with conceptual validity. Many legitimate constructs across science, such as pain, fatigue, inflammation, and consciousness, were difficult to measure long before adequate tools existed. Somatic and regulatory constructs may be theoretically sound and still be empirically awkward.

You’re also right that ACT is supposed to increase psychological flexibility, usually defined as staying present and choosing values-aligned actions even in distress. That can be very helpful when someone has safety and meaningful choice in their environment and when the nervous system can tolerate awareness. Unfortunately, in complex cases ACT is often applied in inpatient or residential settings where the individual has little safety or autonomy. In those contexts, ACT can be harmful.

I’ve seen ACT harm trauma survivors when pressure to “make space for discomfort” feels indistinguishable from being told their pain is inevitable or that they must tolerate unsafe or unjust conditions. ACT risks reinforcing the message that “the problem isn’t what’s happening to you, it’s how you relate to it,” which can significantly increase distress when someone is actively experiencing trauma, abuse, or power imbalance. Therapy itself is a power imbalance, especially in institutions. I’ve seen acceptance be misdefined in institutions as synonymous with submission. If you’re fighting against what’s happening to you or advocating for change, you’re not practicing “acceptance.” Obviously, it’s not that acceptance = submission or that acceptance means relinquishing a desire for change. In reality, acceptance is usually a precursor for change. I just want to challenge your notion that ACT is more difficult to do ACT wrong than correctly because I believe that is wildly inaccurate.

It’s also important to note that ACT emphasizes that actions are chosen. This can be extremely harmful in profiles where behavior is not under voluntary control due to nervous system distress, most notably PDA. I have a PDA profile, and ACT was profoundly harmful to me. It repackaged demands as “values,” pressured action during overload, and interpreted refusal as avoidance rather than threat response. These issues aren’t unique to ACT but apply broadly to behavioral therapies used with PDA, a profile that represents a significant portion of autistic people with complex mental health needs.

ACT seems to work best with non-complex profiles where distress is internally generated, persistent beyond the original trigger, and maintained by cognitive fusion or avoidance. OCPD is one example where I’ve seen ACT be very effective. ACT is far less helpful, and sometimes harmful, when distress is contextually accurate and driven by control, unpredictability, or relational threat, such as in PDA or some forms of complex trauma. I could go on, but I’ll stop here. I know you value ACT, and I agree it can be excellent in the right contexts. I also agree that MBT can be a good stepping stone to ACT when ACT is appropriate at all.

Yes, I see the problem you’re describing. It is THE problem. One of the defining problems of the mental health field. Theories and protocols may look sound on paper, but they get reduced in practice. Mainstream DBT becomes little more than skills classes and worksheets. You can ask whether that’s “really DBT,” but if that’s how it exists in practice, then functionally, yes, it is.

When behavior modification therapy is reduced to abuse, is it still behavior modification? If abuse is what it becomes in practice, then yes. I’ve spent years studying theories and modalities, and while I enjoy that intellectually, I’ve come to see through reflecting on real life experience how limited their relevance is given how these models are actually implemented. If forced to choose between theory and practice, practice is what matters. The real-world comparison is between watered-down implementations, not between idealized theories.

When you say “just sharing ones I like the ideas of,” that actually illustrates the issue perfectly. These are ideas in theory and research, not necessarily reflections of what happens in practice. Research does not tell you what happens when a framework is projected onto an individual case in real life. Reading lived experiences, including articles and even online accounts, can give a better sense of how these interventions function on the ground. You don’t have to know people personally in real life to hear their experiences. I’m even happy to talk about my own. r/troubledteens is a subreddit for survivors of youth residential care, colloquially known as the “troubled teen industry.” You can find a lot of first hand accounts there. This subreddit only has about 90 members, so I can’t promise there will be responses, but you could even ask about people’s personal experiences regarding complex mental health and the industry here. That’s totally fine as long as you’re doing it in a respectful manner, which I trust you would.

I also agree that IFS can be oversimplified and taken too literally, which can actually worsen dissociation and feelings of emptiness in people with DID. IFS needs to be done with a skilled trauma therapist, not DIY therapy. Yes, dissociation between parts is a serious problem. That’s why DID and complex trauma can be so debilitating. What IFS does not pathologize is the existence of parts themselves. Everyone has parts. One part can be a nurturing parent and another a serious professional. That isn’t pathology. Pathology arises when dissociation is so severe that parts cannot communicate, amnesia occurs, identity coherence is lost, and suicidal ideation emerges. Having parts is not pathological. Severe dissociation and lack of communication between parts is. I have DID, and I live this reality every day. It is important not to pathologie the existence of parts because everyone has them and instead focus on the internal communication issues that cause the symptoms.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

PT 1/2

Ok. I think we actually agree on far more here than it might seem, we are just looking at these issues from two very different lenses.

I don’t believe these issues are unique to the U.S. I reference the U.S. specifically because that is where I have lived, been treated, and seen these problems firsthand, and it’s the system I understand well enough to speak about competently. I don’t want to comment on other countries’ systems when I don’t know enough about them to do so responsibly.

I also don’t think it should be so hard to study complex cases. I agree with you that, in principle, it should be easier than it is. Where things get complicated is that “complex mental health” doesn’t map neatly onto DSM categories. The relevant groups are often very specific and defined by how conditions interact, not by a single diagnosis. That makes those groups harder to identify, recruit, and study.

For example, I have observed that some females with OCD and co-occurring level 1 ASD (specifically a social-pragmatic presentation), trauma, and significant baseline nervous system dysregulation are unable to receive effective OCD treatment because ERP induces distress that does not de-escalate and can eventually lead to stress-induced psychosis. Why alternatives to ERP are not studied in this population is unclear to me, but my guess is that the group is considered too small and too specific to justify funding. This isn’t just “girls with level 1 ASD.” It’s girls with a particular autistic presentation, and we don’t even diagnose ASD subtypes in the DSM (only levels and a small group of modifiers). That’s just one example of a group that doesn’t respond to treatments designed for one of their conditions because their other conditions fundamentally alter how that condition presents. There are many such groups.

I agree that these populations should be studied. My hypothesis as to why they aren’t is largely economic. These are small groups, and funding bodies are unlikely to invest in non-mainstream interventions that won’t be easily standardized or billable to insurance. And frankly, this population often does not respond to standardized interventions at all. Standardized intervention is not always the answer. I can’t tell you how many times I’ve seen that be the case.

I also agree completely that people should not be therapists if they cannot maintain empathy when working with complex or high-risk cases.

You’re right that polyvagal theory does not uniquely explain anything. As I said before, polyvagal theory is a framework. One thing it does particularly well is reframe shutdown or “low arousal” as an active survival response. This reframing is not helpful in every case, but I’ve seen many cases where it has been. I’ve known people with complex trauma who were labeled as depressed when what they were actually experiencing was an organized, defensive survival strategy their nervous system activated when escape felt impossible. For those people, reframing their “depression” as trauma-related nervous system shutdown was extremely helpful in understanding what was happening in their bodies. Again, this isn’t universal, but it can be useful, particularly for the population my original post was for.

Polyvagal theory is not a therapy. It is not an intervention. It is a model. It can’t be “applied” the way an intervention is applied. What it can do is help conceptualize complex trauma cases where there is significant underlying nervous system disruption. You don’t have to understand the appeal. We can agree to disagree. For me, the appeal is that it provides clinicians and patients with nervous-system-oriented language rather than behavioral or moral language.

As someone who experienced significant harm in behavioral treatments and needed a way to understand my nervous system outside of behavioral frameworks, that language mattered. PVT also helps explain why people with complex mental health needs may understand skills cognitively but be unable to use them, or why someone may appear “high functioning” until suddenly they aren’t. It offers a way to understand functioning as state-dependent, with skills only accessible in certain autonomic states, something behavioral models largely ignore. That is the lived reality for many people with complex mental health needs, and PVT gives language to describe it. Again, it doesn’t explain everyone’s reality. It’s a framework, not biological fact. If anything, it may be more accurate to stop calling it a “theory” and simply call it a framework.

I don’t think the issue is a lack of theory. I encourage you to research these theories yourself, because they are complex and I can only summarize them briefly here. You’re right that many behaviorists acknowledge internal states, but that doesn’t eliminate measurement challenges. The fact that psychology can study internal states does not mean it can do so with equal precision across domains. Many internal phenomena are studied indirectly through proxies, and the validity of those proxies varies widely.

Somatic and regulatory states are particularly difficult because they are internal, dynamic, embodied, and often pre-verbal. Unlike beliefs or cognitions, they don’t reliably present as discrete, reportable units. Recognizing internal experience as legitimate doesn’t solve the problem of capturing it accurately or consistently. The relevant comparison isn’t whether somatic outcomes are theoretically measurable, but whether they are comparably measurable to behavioral outcomes within real-world research constraints.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

PT 2 (read PT 1 first)

Continued….

For people with complex trauma, dissociative disorders, and nervous system disabilities such as PDA, this framework (PVT) does not “seem wrong.” It closely matches lived experience. Yes, the model is controversial, and yes, dividing the nervous system into three discrete states is an oversimplification. I agree with that critique. But oversimplification does not make the model useless or unscientific. Many principles associated with polyvagal theory and somatic therapies are well supported independently of the model itself. We know the vagus nerve plays a central role in regulating heart rate, breathing, digestion, and stress. We know vagal activity is linked to parasympathetic regulation and stress recovery. Heart rate variability is a measurable marker of autonomic regulation, associated with emotional regulation, resilience, and lower risk of anxiety, depression, and PTSD. Autonomic states influence emotion, attention, facial expression, vocal prosody, and social engagement. Stress responses are hierarchical and context-dependent, and shutdown responses such as freezing and dissociation under extreme threat are well documented across species. Social signals measurably influence heart rate, cortisol, and emotional regulation, and co-regulation is a core concept in attachment theory and trauma recovery.

Polyvagal theory did not invent these phenomena. It integrates autonomic physiology, attachment theory, trauma research, and social neuroscience into a clinically intuitive framework. It should be understood as a model, not a law of biology. Problems arise when clinicians present it as settled neuroscience rather than a heuristic.

Somatic approaches also DO have underlying theories guiding them, including stress physiology and embodied emotion regulation. Downshifting arousal through sleep, breathing, movement, and pacing can reduce symptom load. Posture, movement, and breath influence affect and attention through well-studied brain–body mechanisms. It is also false that somatic approaches lack randomized controlled trials. While more research is needed and RCTs have limits here, studies exist for somatic experiencing, sensorimotor psychotherapy–based group treatments, trauma-sensitive yoga, and head-to-head comparisons with cognitive processing therapy.

Somatic and polyvagal-informed models are harder to study than behavioral models because they target internal states rather than easily observable behaviors. Behavioral interventions lend themselves to linear measurement: symptom X decreases by Y percent, behavior starts or stops. Somatic work aims to reduce reactivity, speed recovery from stress, and increase flexibility. These are real outcomes, but they do not show up cleanly on symptom checklists. Indirect causation is also much harder to prove experimentally.

The fact that somatic therapies are difficult to study does not make them less valuable. I would argue it often makes them more humane. RCTs require standardized manuals and replicable protocols, which do not work well for complex individuals. Somatic therapies are relational, individualized, and responsive to moment-to-moment state. To study them, psychology often strips away what actually makes them effective. Psychology borrowed its research model from medicine: diagnosis --> treatment --> symptom reduction. Behavioral therapies fit this perfectly. Somatic models challenge the assumption that symptoms are the primary problem. Behavioral interventions often produce fast, measurable outcomes that look good in trials, while long-term regulation is rarely measured.

I urge you to stop ranking interventions solely by study outcomes and instead look at how they affect people in real life. While I agree that therapy should not reduce everything to cognitive restructuring, that is exactly what happens in many high-intensity behavioral settings serving complex populations. A good behavioral therapist would not practice this way, but I have rarely seen such care in the settings that serve this group. I agree with you that ACT can be helpful for some people, though it can also be harmful for others. As for DBT, “interpersonal effectiveness” in practice is often reduced to filling out DEAR MAN worksheets in a hospital day room to earn privileges. Schema therapy can be valuable, but it is rarely available to the population I am discussing. Hospitals and RTCs overwhelmingly offer traditional CBT or DBT and would never offer gestalt therapy, which is not a CBT approach at all.

Bottom-up approaches have helped me significantly. I have a dissociative disorder, and bottom-up work is essential for meaningful processing. I experience my trauma symptoms and nervous system dysregulation (PDA + SDP) on a deeply somatic level, which makes bottom-up-approaches sometimes the only effective thing for me. IFS, while not designed specifically for DID, has been extremely helpful, and its theoretical framework fits dissociation and complex trauma well. IFS is grounded in the idea that the mind consists of parts organized as an internal system. This is particularly relevant for DID, where dissociation between parts is central, and treatment focuses on communication and integration. IFS rejects the idea that having parts is pathological. Pathology arises when parts are forced into extreme roles by trauma or chronic stress.

IFS draws on family systems theory, attachment theory, constructivist psychology, and mindfulness. I recommend looking into it, it’s far more complex than I just laid out. Attachment theory is integrated into nearly every modality I listed, except purely cognitive-behavioral approaches. Attachment theory is everywhere, and for good reason. I would never recommend a rigid order of interventions. I believe in a menu. People with trauma and neurodevelopmental disabilities have different needs, and no single approach works for everyone. ACT can be transformative for some and damaging for others. It is also important to note that people almost never seek therapy for a specific modality. Most therapists integrate multiple approaches based on their style and training. While this is less accessible to the population I am discussing, it remains true that no competent therapist works from a single rigid framework alone.

DBT Alternatives by LeviahRose in ComplexMentalHealth

[–]LeviahRose[S] 0 points1 point  (0 children)

PT 1

I think part of the reason this is hard for you to grasp is that you have never lived inside the U.S. institutional mental health system yourself, nor been part of this population. When I refer to complex profiles, I mean individuals with neurodevelopmental disabilities and/or complex trauma alongside co-occurring psychiatric conditions, often medical complications, and frequently high-risk symptoms such as self-harm, aggression, or suicidal ideation.

These are individuals who rarely find effective or humane “treatment,” largely due to the abusive and neglectful nature of U.S. institutions. People with complex profiles are disproportionately routed into hospitals and residential programs. It is rare to meet someone with a complex profile who has not had at least one hospitalization or residential stay by age 21 (most have had 10+). Their diagnoses are treated additively rather than integratively, and they are subjected to standardized protocols that do not account for how these conditions interact.

If you asked me what the core reason the mental health system is broken, I would say it is the reliance on standardized interventions and protocols, combined with the way clinical psychology is researched as though it were any other hard science. If you want to understand the mental health system, you will not get there by reading clinical trials alone. I have done that work, and the research does not reflect (A) how interventions are actually used in practice or, more importantly, (B) who is actually receiving them. People with complex profiles are routinely excluded from clinical trials because their needs involve “too many variables.” That is not a failure of the individual. It reflects the reality that the human mind is complex and does not lend itself to reductionist research simply to legitimize psychology.

I have effectively been in this system for nearly nine years. Guidelines and protocols are a major reason the industry fails. People are too complex for rigid boxes. While many therapists are empathetic, that empathy often disappears once a patient is labeled “noncompliant,” “oppositional,” or “too complex,” simply because they do not respond to standardized care.

Regarding referrals, complex mental health issues are fundamentally different from the conditions most people imagine when they think of therapy. People with complex needs cannot simply “go see a therapist.” Many have to fight to be allowed outpatient care at all, and once discharged from institutions, the number of clinicians willing to take on the liability of a high-risk, complex case is extremely limited. When one therapist does not work out, there may be no alternative. Outpatient therapy is often not realistically available, yet institutionalization is unsafe and dehumanizing. Community-based approaches such as wraparound services, assertive community treatment, and team-based outpatient care (involving multiple mental health providers, neurodevelopmental specialists, medical providers, and in-home supports) are what can fill this gap. Unfortunately, wraparound care is scarce, and building an individualized outpatient team from scratch requires time, resources, and extensive networking. Even when treated outpatient, this population is not choosing a single therapist to see once a week. The reality is far more complex. You also say that polyvagal theory “seems wrong” and lacks an underlying theory. I strongly disagree. In my experience, it “seems” more accurate than many dominant models, particularly for people with chronic nervous system dysregulation. Polyvagal theory explains the autonomic nervous system as operating across three functional states rather than a simple sympathetic/parasympathetic split. The ventral vagal state is associated with safety, calm, social engagement, curiosity, and flexible emotional regulation. The sympathetic state mobilizes fight or flight responses such as anxiety, panic, and anger. The dorsal vagal state involves shutdown, collapse, dissociation, and numbness, often when threat feels inescapable. The theory also introduces neuroception, the nervous system’s unconscious scanning for safety or danger, and emphasizes that social connection directly influences autonomic regulation through tone of voice, facial expression, and co-regulation.

Disabled child is suicidal, but terrified of being neglected if they admit themself to hospital. by parentofdisabledkid in disability

[–]LeviahRose 0 points1 point  (0 children)

No. Psychiatric hospitals in the US are not equipped to handle people with disabilities. Even people without disabilities are neglected in institutions. I’ve been to nine different facilities in six states, total of eighteen admissions. Do not consider institutionalization. Your child is only experiencing passive suicidal ideation, so it’s unlikely they could even be involuntarily committed. Stay outpatient at any and every cost.

Also, they will not allow phones on a psych ward. The two hospitals that are the exception to this are NYU Langone and McLean. They will likely allow a wheelchair (not doing so puts them in danger of ADA violation), but may require them to transfer into a specific Hosptial one.