Mystery disorder(s)

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I'm new on here but my daughter has pdd. She is sort of a mystery and I have no one to talk to who cares or understands. Most people don't understand about asd's especially older people who I mostly know. I'm 47 and my daughter is an older teen. Some history: She was diagnosed with pdd-nos at age 12. She never did quite fit in with actual autism or aspergers. She talked at a normal age but not "normally" She could not pronounce things right and didn't form proper sentences, and didn't hold normal conversations. She had 4 years of speech therapy and then was more normal but then she "monologued" and she still does this from time to time. She doesn't have the best eye contact. She never did any stimming or repeated movements but she used to just sit and "sing" to herself just nonsensical noises. The only possible movements she does currently is some rocking while she monologues. She never did the spinning or lining up of things. She didn't play with toys such as role playing. She didn't like dolls or toy dishes or anything typically girly. She played with megablocks mostly, and she had some toy vehicles. She was really into robots and it was her main subject to the exclusion of having friends. She did have one friend that she met at age 5 and they are still friends. She resisted potty training and she had tantrums, and was and still is very resistant to being taught anything or having anyone work with her such as doctors, counselors, teachers, etc. She had an iep at school but still failed. They said her iq was borderline at 77. She failed all of her classes in 9th grade so she quit school. Another thing not fitting is she has no ability to do math which most people with asd's have. Her ability is in drawing and computers. Current: She continues to be miserable and cranky and negative. She makes us very depressed. She went to a psychiatrist and the "blankety blank" woman said she didn't have any pdd at all, just depression. She put her on an anti-depressant- she had been on them in the past- and it doesn't seem to be doing much. The girl doesn't like noise, people, doesn't like being touched, is too afraid to do things such as talk on the phone, check out in a store, drive, go up to people, get food at buffets, and pretty much everything really. She just wants to hole up in her room and be left alone sort of like a computer nerd. Oh and she walks on her toes. She does not brush her teeth or keep herself up and refuses to go to the dentist because she says it causes too much anxiety. She hates the doctor, she hates the counselor, it's like if they don't do things her way then she hates them. In my mind she has passive agressive personality disorder because she never is in an angry outburst, she's just negative and complaining and being stubborn and resistant, and she "does things" like ruins my drinks, makes messes and doesn't clean them up, refuses to do simple things like put the cap on the toothpaste or hang up her coat, I mean, I know most kids are sloppy but at her age? Sometimes she just walks by and steps on my foot or hurts me in some way. She hates her dad and refuses to go anywhere wwith him alone and she rarely talks to him. Nobody seems to understand the full extent of her daily life. She goes to the counselor and she says she seems normal. Because she is such an intelligent talker. There's nothing behind her talking except anger and stuff about computers. She's way over my head when it comes to computers and photo and video editing. Today we went to the counselor and they pretty much decided she is going to get a case manager. Daughter has resisted this idea of course. We stopped at Walmart afterwards and her dad went in and while we waited in the car I got an earful of negativity and anger about the case manager. i was about ready to cry. She said she was going to be angry all day. Then we stopped at McDonalds and then she was perfectly ok and no longer seemed angry, even mentioned something about the next appointment being at noon. What gives? it's like she is changing from one mood to the next. She does that a lot. Sorry this is so long but I thought maybe someone on the inside would have a better understanding of her behavior and what I should do.

I think she absolutely seems like she's somewhere on the spectrum.

That's not true, about the math. Sounds like she's a visual thinker and those are notoriously crappy at math.




So she had a meltdown? Of course she is "changing from one mood to the next", do you expect her to stay in the meltdown-mode forever? After the stressors that caused it has been removed, she's fine again.

Also I think you should just accept that she likes computers (or whatever that interests her later on) - there's nothing wrong with that. I can understand it's frustrating not being able to talk to her about anything else from your point of view, but she probably thinks you are just as frustrating if you don't want to talk to her about computers, you know?

She will probably be happier when she can go do her own thing, after she's become an adult. Help her with whatever she needs right now, but what she needs will not be what you think she should need/become.

Also, I do think the psychiatrist was right in that she actually is depressed _too_, but a situational depression that can't be medicated (as proven by earlier tries with medication). You need to figure out what situation is causing it and change it - even if it is about you not accepting her. I believe you're earnestly worried about your daughter, so I hope she will be alright. It's not bad here on the spectrum, if society as a whole and our families just accept us.

Or she could be bipolar also, in which case antidepressants are not only unhelpful, they are really really really bad.

The belief that folks with asd are all math geniuses is a stereotype.

Some really are like rainman (or Sheldon in the BBT), but many are totally innumerate.

Nothing wrong with film editing as a career. She should build on that.

What exactly is she angry ABOUT-about having a case manager?

I'm not against her being a computer "geek". I'm just saying that's all she does. She has no interest in doing chores or getting exercise. We had a long talk a while ago today and she said she is tired of being a human guinea pig (that's how she put it) because of my wanting to have her be diagnosed with something. What happened was about a year ago she was wanting a counselor and it is limited where she can go with her medicaid so I took her to where she always went in the past. They done an initial evaluation and I told them she had a previous dx of pdd-nos, and of course they could find no record of it. So after some counseling they had her see the psychiatrist again and this one said she saw no signs of the pdd. I was upset because I was afraid she would lose her SSI benefits and plus I knew she was wrong. She said maybe she had it at one time but she couldn't see signs of it and she probably just has social anxiety.
She related to her counselor last spring, that she wanted to move out of the house because she can't stand our noise. We have been remodeling and she is also sensitive to normal noises like putting dishes away and the tv. Well also I want to say that the agency makes the parents be in on the sessions now and daughter has not felt like she is getting counseling; as in a sympathetic ear, instead she is getting "yelled at" in her mind, for being sensitive to noise and having other problems. She misses the old days of the childhood counseling. So then the counselor suggested case management so she can have people to help her with shopping and budgeting when she moves out but she doesn't want it. She says it's embarrassing. Plus I know how she doesn't like people in general. The counselor kept asking her if she wanted it and she kept saying no but one day she gave in just to shut her up, she said. Counselor said she would have a c.m. come in with the next session (which was today) and she could just see what it was about. So she was there today and the next thing you know they were making plans for her to start up and they never asked her if she wanted it for sure. So that was what made her so mad. They were suggesting things like a tag she can wear that will call someone like the life alert thing, and things like people that can come and clean her apartment, and even I was thinking, she's not a total idiot. Sometimes she is more logical than I am. We both came to the conclusion that the whole counseling experience has made her even more angry and that opting out altogether would just be the best. The thing with SSI is that they had her re-evaluated by a psychologist again this past July for the renewal of her case, and so we did that, and then they sent us a letter saying she still qualified but she might get better and so she has to be evaluated again in 3 years. They never tell us what they find and so that makes me nervous. When I talked to daughter today about getting another opinion on her dx she said no she is tired of it all, like I said earlier. I am starting to feel like an idiot being obsessed with her dx and how is she going to be independant. But then also today she agreed to getting someone from our church to be a counselor/mentor, even though she would still be a bit nervous at first. That is a big relief and also surprising. She doesn't attend with us regularly.

Maybe she just wants someone to be able to talk to, that isn't related to her getting a benefit she doesn't want.

Rather then trying to label, someone to just understand and help teach her to cope with her brain's differences would be a great thing.

Wow, what a hard situation. I think suggesting a tag is going a bit too far if she is verbal now, and can see how she took offense. I can see how it would feel embarrassing for her to have people doing things for her, but if she do need those services down the road it is nothing to be ashamed of. EVERYTHING feels embarrassing at that age.
Well it has nothing to do with being overall "an idiot" having difficulties in one area and expertise in others, it's more usual than not that people on the spectrum have those extremes in functioning.
Is there not a possibility to revert back to (or add) the sort of talk-therapy she had as a kid, with a un-church affiliated therapist of some sort that has knowledge of people on the spectrum, as she feels the process of getting diagnosed (and it doesn't sound easy) is tedious. It sounds like they are more focused on actually getting a diagnosis than do talk-therapy - which would help her in the long run, but isn't what she wants right now from them?
I don't think you should feel stupid for being focused on helping your daughter have a good life, it is the treatment you've received that is a shame.

It is also so weird that they have not diagnosed her already? The toe-walking, the "special interests", the meltdowns, the withdrawnness, the delayed speech? Have you told them this, or do they only go on what they see when they meet her?

Is she allowed to join Wrong Planet? If not, why not? If so, would she want to join?

And yeah, please. Drop the diagnosis hunt, or she may very well have her PDD-NOS diagnosis formally retracted.

I also wanted to say it wonderful of you to have pretty good grip on what sensory issues and situations that cause these meltdowns instead of just dismissing them as behavioral problems.
The difference between tantrums and meltdowns isn't just semantics:
http://www.autismems.net/57801/82012.html

Sounds like hfa ( high functioning autism) which is similiar to aspergers. The difference being that aspies learn to speak at the normal age, and the normal way. She was delayed and went through a nonstandard speech phase ( maybe still has vestiges of it).

So if she does get that as a "label" i would think that that would suffice as a replacement for pdd to get whatever aid would be available. In addition to it being the accurate label for her.

Thank you all. Please continue to put forth your ideas if you wish. My daughter can join this if she wishes but I kind of think she won't want to.

I used to think she had Non-Verbal learning disorder but she had a few things that didn't quite jive, and it may be that, or it may be high-functioning autism which I did wonder about, if there are any psychiatrists who believe in it. I'm confident she is in the spectrum somewhere, but I think the most problematic thing for her is her IQ, which is 77. Her verbal IQ is higher than that. it's the highest part of her test. She can rattle off a lot of intelligent-sounding things about photoshop and video stuff like codecs-? and frame rates, etc, but give her a $5 bill and she wouldn't know how much she could spend with it. She learns everything now from youtube. I think she has learned more from the internet (I pretend she goes to Google High) than from being at school.

Sorry I have trouble staying on track when I write.

I was happy with her PDD_NOS "label" and would still be but I feel like she never got the help she needed. She never got therapy to reduce her sensory problems. She can't handle going into the mall or sometimes walmart. She had a very large personal space at school and had a hard time going to her locker because of it. I think because she has medicaid, she never got the help she needed. Nobody "good" takes it such as private psychologists or autism clinics. At least not around here. She has to go to the community clinic where all the down-and-out people go. Their service has never been that good; we had to pull teeth to get her to see a psych. and they now require the whole family to be in on the sessions where they never used to.
I do think she just wants talk therapy but I think she needs some sort of intensive therapy for diminishing anxiety. She walks around like a stiff board and follows close behind me when we go into the public. The only place she will go around without me is in Ponderosa-go figure. I asked her why that is possible for her and she didn't really know.

When I told her dad she wants to turn down case management he was angry. He likes the idea of someone at church befriending her but he thinks she should "stay in the system" so she will be more likely to get benefits. Plus there is an arts education place where for being a cmh patient she can take classes for free including a photography class. Her dad is also wanting to get on with his life so to say, it has been a difficult 18 years and he is 56 and is almost ready to retire. We want to sell our house and downsize as far as yard size (house is already dinky, lol) and rent and not have so many financial obligations. He is so afraid she will be a burden of sorts. He says we should insist on her sticking with it. I understand she is insulted but I could tell her she wouldn't have to do it forever. Well one good thing is we got her current psych. to sign a form confirming she is disabled that she had to have to be able to get an apartment that is subsidized for the disabled.
She will be on the waiting list soon.