>I’m being somewhat cautiously optimistic when I say this, but at least for now, things are going well.
I spend 5 hours a day, 4 days a week, in a partial hospital program. The “doctor” in charge is actually a Phd psychologist, and she has put her heart and soul into this program. The psychiatrist spends at least 30 minutes, everyday, with every patient. He doesn’t just throw meds out left and right; he tells people to go golfing and to go to the library and get a book, and read it (not random suggestions, but ones that are specific to those people’s needs). There are two psychiatric nurses. I especially like one of them, who will make jokes with me and laugh when I joke with her.
There are 10 or 12 people in the group, but a few are missing on any given day. My favorite person from my inpatient stay, a mother of 3 teenagers, is there, which brightens things up. 8 or 9 of the people are bipolar, the others severely depressed. It leaves me… often confused. I don’t participate in 98% of the conversation. Today, we each had to introduce ourselves to a few new people; who we are, what brought us there. I told them my name but wasn’t sure what to say about what brought me there. Someone said, “Lydia is our comic relief. Not that what she says isn’t important, but she’s silent over there for 3 hours, then knows just what to say to crack us all up.” Glad I can help 🙂
Anyway, everyone there seems to think that the former BPD diagnosis was insane, and that autism is right. I feel validated by that. It allows me to say what I feel, which is that I’m not broken, I’m not “suffering” from anything. That said, my “treatment goals” are things like participating in the conversation in the group at least x times per day; staying attentive to one other patient per day and jotting down notes for at least 30 minutes; writing down the feelings that I hear mentioned and the contexts; getting to and from the program sucessfully on the bus (I took a detour the other day…); improving eye contact (currently by way of near-constant reminders); increasing time spent in the room with everyone (it can be near 3 hours straight… right now, I get up every 45 minutes-ish, go in the tiny ‘library’, turn off the lights and sit in silence. Then, I can go back and stand to listen again.)
I can’t BELIEVE how much they get it. They get it! They’re not making me “be” depressed or anxious or this or that… they are truly looking at where I’m at and what they can do to help. They helped me to create another new system for remembering chores that is really helpful. This is… wow. What great practice, to be in a situation where I can work on these important skills without too much pressure. Pressure makes things worse. It’s great.
That said, I am now also on Geodon… an atypical-antipsychotic usually used to treat bipolar disorder and schizophrenia. It is in the same drug class as Risperdal, which is frequently used to help people with autism deal with frustration less aggressively, but Geodon does not cause weight gain as Risperdal does. So far, I take it once at dinner, since I was losing it more evenings than not… and so far, only one outburst, which was in the afternoon before I’d taken it that day. So far, so good.
>I wish you knew that, truly, the last thing I want is to hurt you.
I wish you knew that I want to make your life easier, not harder.
I wish you knew that I want to be the “normal” daughter you wanted.
I wish you knew that I can’t be that daughter.
I wish you knew that I don’t want you to fix me. That I like who I am.
I wish you knew that I NEED you to be supportive.
I wish you knew that I don’t repeat the same conversations to dwell or drive you crazy but because I find a lot of comfort in that.
I wish you knew that I desperately want to do understand. But I don’t.
I wish you knew that I know just how much I burden you.
I wish you knew that I really, really am trying my best.
I wish you knew that I do like making progress.
I wish you knew that when you push for it too fast, that I shut down.
I wish you knew that, right now, my emotions are often out of my control.
I wish you know how much I hate that, how much it scares me.
I wish that you believed me.
I wish that you would believe in me, too.
>During my inpatient stay, OCD and social anxiety were the diagnoses thrown around in my presence.
Behind the scenes, and what they told my parents, was that I have Borderline Personality Disorder. That implies that even my autism diagnosis is some kind of ploy on my part… for attention, I guess? BPD is a diagnosis that carries a stigma, that many clinicians do not treat. I was upset because, knowing the criteria for BPD from a psych class two years ago, I could not see how I met them. I know that self-awareness isn’t one of my strongest suits, but if I was the things that a BPD diagnosis requires… then I didn’t know who I was at ALL. I was extremely upset when I found out about this.
I went to the partial program today with a letter that I had taken a few minutes to write to the psychiatrist. I am sometimes very poor at answering questions verbally, so I gave a little background and explained what I hoped he could help me with (the IT). I didn’t want to count on my shakey ability to explain things.
The doctor at partial read my notes, read my letter, talked with me for a bit and said that there is no way that I have BPD. He said that whether they call it autism or Asperger’s or non-verbal learning disorder is neither here nor there to him– that he wants to treat the current problem.
Can you say relief?
Knowing that I have autism is validating. I’m not crazy or stupid or lazy (most of the time!). It is not due to being spoiled or lazy that I can’t do things that most people my age do easily. Autism does not mean that something is broken, if you ask me. So please, don’t try to FIX me. When they were saying things about personality disorders… now, that is broken and needs to be fixed. For the time that I have known that I have autism, I never felt broken. I don’t want to feel broken, because I’m not. So, if anyone wants to know why “which label” matters… right now, for me, it’s because I’m kind of hypersensitive and defensive about other people trying to fix me. Certainly, I need help with things and I need to learn new skills. I may be developing those skills more slowly than most. But I have the capacity to learn them, and in time, I will.
As far as the program goes… not exactly appropriate for me, but that’s okay. It’s a lot of group conversation in which I am completely lost. Also, most people there (7 of the 9) are bipolar so much of the discussion centers around preventing and managing manic episodes. I can’t even relate, so it’s hard to stay focused. But hey, it’s structure, the doctor seems really good, and it gives them the chance to monitor my meds much more frequently than they could with monthly appointments. I’ll take it, and try to stay patient in the process.
>I’ve been debating back and forth, up and down, and back again, about whether to blog about the past eight days of my life. But you know what? Where I was and why I went there is nothing to be ashamed of, so here it goes.
My psychiatrist switched some meds around recently, and as the old ones had word off but the new ones had not yet kicked in… I was one anxious girl. My head was SO foggy, and everything was scaring me. The moments of IT (see older post) were more and more frequent, and in those moments, I’m not exactly sure what I might do. I asked my mom if I could be at the hospital, just to be safe until the meds started working. It took some pushing, since I hadn’t made a suicide attempt. How ridiculous is that? Unless I had actually MADE an attempt, my doctor said that it wasn’t necessary. How about let’s stop things before they get there?!
So, I went. I was incredibly well taken care of while I was there. It gave the SSRI time to kick in, and my Buspar (for anti-anxiety) got tripled. The doctors completely failed to address or even to acknowledge the IT attacks… the times when I am angry, frustrated, anxious, out of control and not at all myself. If I were ever hurt myself, someone else, or someTHING… that would be when it would happen. Not in a million years when I’m normal me. So, I agreed to spend the next 4 weeks (MWF) in a partial hospital program. I am hoping that the doctor there will give some new meds a shot to help those times… maybe a mood stabilizer or anti-psychotic. Those are scary words, aren’t they? But those times scare me so much, and I want them to stop.
I’m frustrated that autism is being treated as strictly psychological. Doctors kept telling me that I “can’t” have autism because I can speak, because I’m not sitting in the corner flapping my hands, because ‘they know autism when it walks in the door, and you don’t have it.” Then, they get frustrated with me when I can’t tell them how I’m feeling. Ughhhh. These doctors, who I saw for 5 or 6 minutes a day. I know– they can’t know. But I do feel pretty invalidated.
I see that a lot has been happening in my blog world since I was gone… I am not ignoring you! I read all the comments and will get back to you all in the next few days.
So, the past eight days have been sometimes terrifying, sometimes hilarious, but mostly reassuring. The people who work there are incredible. I was safe, and I was somewhere that med changes could be made more quickly. All in all, I’m very, very glad that I went. And now, I’m very, very, VERY glad to be home with my kitty!
>Sometimes, I swear you can see autism in pictures. I have to wonder. I just see… me, doing what I did. For your enjoyment, here’s a smattering of the first few years. I wasn’t a happy kid. Do you see cranky and spoiled, or do you see autism?
>Just to clarify, not that I thought anyone was confused…
I worry that I’m faking. That autism is just yet another wrong diagnosis, that it’s not neurological but psychological, that I’m just lazy. I want to be “normal.” I want to be thinking of boyfriends, jobs, homes, and going out. I don’t go out. I don’t see friends. I have my mom, my aunt, and two or three close friends who I wouldn’t trade for anything. But still, I want to be NORMAL. And it seems to me that, if it’s not really autism, that normalcy is within my reach and the only reason I don’t have it is somehow due to my choice.
The first autism-spectrum diagnosis I got was Asperger’s (before that, I’d had the typical depression, anxiety, social anxiety, OCD, etc. ones). On my good days, if you talked to me for an hour, you might think Asperger’s made sense (I can have conversations, I might even look in your general direction, I might stall out a little, and I’d really rather talk about my cat than anything else, and the stimming is still there, but controlled). On my very worst days… well, you wouldn’t talk to me for an hour, because I wouldn’t be responsive, but I act more like someone with moderate autism (more obvious stimming, a lot less focus, much more in my own world than in yours). Even when I’m not talking and not responding, even when you don’t think I’m there… I want your company! I’m all the same person, so just treat me like you normally would. I kind of worry that anyone reading my blog will think that I’m one of the “fakers” because I seem normal in writing. I often have long conversations with a friend just by typing when I can’t get it together to speak well or understand others speaking to me. My writing is almost always in tact, and, I think, comprehensible. The words are in my head, and when I write, it’s like cornering and capturing them. When I try to speak, they float around, and sometimes I can peg down the ones I need. You can read this and see it as one continuous thought, but I might have taken 2 hours to write it out.
So, where am I on the spectrum? Professionals call it high-functioning autism. My parents call it “Lydia land.” I don’t really know. As long as there are cats, though, I’ll happily stay there.