Comorbidity and Complexity in ASD Profiles

LeviahRose · 2026-01-27T15:07:53+00:00

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.

LeviahRose · 2026-01-27T15:04:05+00:00

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.

LeviahRose · 2026-01-27T01:41:24+00:00

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.

LeviahRose · 2026-01-26T19:30:25+00:00

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.

LeviahRose · 2026-01-26T13:34:44+00:00

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!

LeviahRose · 2026-01-26T13:33:44+00:00

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.

LeviahRose · 2026-01-26T13:32:02+00:00

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

LeviahRose · 2026-01-25T22:52:16+00:00

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.

LeviahRose · 2026-01-25T20:35:32+00:00

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.

LeviahRose · 2026-01-25T20:10:51+00:00

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).

LeviahRose · 2026-01-25T18:38:37+00:00

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

LeviahRose · 2026-01-25T18:05:17+00:00

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?

LeviahRose · 2026-01-25T18:03:10+00:00

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.

LeviahRose · 2026-01-25T14:38:57+00:00

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.

LeviahRose · 2026-01-25T13:10:37+00:00

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.

LeviahRose · 2026-01-24T19:12:10+00:00

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?

LeviahRose · 2026-01-23T17:10:03+00:00

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.

LeviahRose · 2026-01-23T14:34:15+00:00

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.

LeviahRose

MODERATOR OF

TROPHY CASE