I am so sorry you are in such a difficult situation, and before I contribute to this discussion I want to make it clear that I cannot and will not judge your decisions or choices. I know how hard they are to make, what a struggle the process is, and that long run all us parents really have are our own gut instincts.
That said, I unfortunately feel the need to complicate your decision making process. In the roughly 15 years I've been posting on ASD boards in connection with my son's diagnosis, I cannot remember EVER hearing of a residential treatment situation that the ASD individual being treated found helpful. Realize this isn't a scientific sample, it is just who I've happened to read on a message board that advocates for a certain perspective on ASD. From what I've read, residential treatment for ASD individuals most often has lead to a vicious cycle of excessive stress, over medication, complicating side effects, and so forth. Treatment facilities are often filled with sensory complications, stressful change, and a mindset that does not accommodate the type of logic most ASD brains seem to need. These aren't small challenges to someone with ASD; they can be literally painful, and people do not get better while every fiber of their being feels it is in pain.
Facing mental health issues that could benefit from residential treatment while being ASD can put a family between a rock and a hard place. Teenagers seem to be facing a mental health crisis in the US, and many NT teens HAVE found residential treatment to be life saving. Figuring out which side of the equation will determine your daughter's experience seems like an impossible task.
If this was my daughter, and note that my NT daughter did very much struggle with mental health issues and thoughts of self-harm at the same age as your daughter, I would listen VERY carefully to what my child had to say on the matter. Give her all the information and let HER tell you what she does or does not want to try, and why. I never enrolled my daughter in residential treatment and she did get better (what worked for her was testing out of high school and having no obligations of any sort for as long as she needed). But, oh my, it was such a struggle for so long. I couldn't get that child out of bed, and when she was up it was often for 24 hour stretches. Those were the hours that scared me to death; when she was asleep at least I knew she couldn't self harm.
Knowing what to do in these types of situations feels impossible. It is even worse if they are refusing to talk to you (as my daughter pretty much was). But after what my family went through I wouldn't discount the possibility that what your child may need most is to feel heard, loved, and wanted in whatever form she wishes to provide. If you have to take off work to sit in your home with her just to be there if something happens, while expecting nothing at all from your daughter and making no demands on her, I would say do it. Pulling back and giving space while providing a presence should she wish to access it is very, very hard to do - it seems to go against all our instincts as parents - ... but also something that really can help.
Long run, I can't say I got much from the medical profession for either my ASD son or my NT daughter with mental health issues. My son's ASD was picked up by the school, not a doctor, and the special education services were able to meet his needs. My daughter did see a therapist she liked, and had one meeting with a psychiatrist to get more of a diagnosis (and medication she claimed to want but rapidly stopped taking), but a lot more got accomplished by reading the signals and testing things out. No one knows your child better than you. No one. You take in all the professional input but understand that they don't have all the pieces, and their training is to find medical solutions, when sometimes a social solution (as a previous poster mentioned) would actually be better. It was soooo hard. It was always on me; my husband believes in passing things over to the professionals, but my kids were resistant and I'm glad I eventually learned to listen to really HEAR them and use that to drive my decisions.
I should note that I did cheat a little with my daughter. I found a diary and I read it. I finally could understand what I was dealing with. It completely broke my heart but even painful information can be used as a key. I needed a key, and I used it very carefully. My daughter will NEVER know that I read it.
Sorry that I was zero help in answering your question. You may have already been through all this process and here I go mucking it up ...
Also, if you have to go outside your insurance to find what is truly most suitable, I hope you are able to consider it. Our insurance has paid for almost nothing of what our kids have needed. I gave up, to be honest. It's hard enough to find the right people to work with, much less ones you trust who also are covered. The insurance world isn't out to help people thrive, it just isn't. It is only designed to keep people alive. That isn't enough with tricky issues. We've given up a lot to do the best we can by our kids, and they appreciate it.
I wish you the best as you try to sort things out in this painful and difficult time.
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Mom to an amazing young adult AS son, plus an also amazing non-AS daughter. Most likely part of the "Broader Autism Phenotype" (some traits).
30 Jan 2020, 6:32 pm
