What Does it Matter Now? Need Your Opinions and Info, Please...

Discussion in 'General Parenting' started by DaisyFace, Feb 8, 2011.

  1. DaisyFace

    DaisyFace Love me...Love me not

    For years I have suspected that difficult child was on the spectrum...

    and over the years I have been told that she couldn't be because "her eye contact is fine" or "but she speaks very well"...

    In 2nd grade she was evaluation'd by a child psychologist who diagnosed (among others) NonVerbal Learning Disorder (NVLD). As far as what to do about NonVerbal Learning Disorder (NVLD)? Well, there didn't seem to be a lot of info or supports available, but we dutifully took the report to the school to implement a 504, which consisted of social groups - "lunch buddies", preferential seating and written cues to supplement verbal lessons.

    difficult child was so darn stubborn about everything! Refused anything "extra" the teachers tried to do for "support". Refused to bring her notebook back and forth. Would make up stories to get out of homework. Bullied other kids. Stole from other kids.

    By the time difficult child reached middle school it was determined (by the school) that all of her issues were largely behavioral. 504 was dropped. Psychologist's tests were ruled "out of date" for school purposes and since difficult child had been non-cooperative with everything the school had done for her previously....it seemed pointless to pursue it.

    The the behavior issues really exploded. In addition to bullying and stealing we were now dealing with running away, cutting, sex, and violence. New evaluations (though not as thorough as years before) now found "ODD", depression, anxiety, and possible "conduct disorder" and probably an emerging personality disorder.

    Now here we sit waiting to (hopefully) get additional services from the state to help difficult child based on the current diagnoses...

    and yesterday, I get in the mail a newsletter from the local hospital with an article on the warning signs of autism in young children. difficult child had at least two of them - possibly three. The biggest red flag? The list included 'Child does not engage in imaginative play by 18 mos' difficult child had no "imaginative play" - ever. EVER! I remember asking about it when she was little and I was brushed off...

    OK - so does that mean that difficult child is, indeed, on the spectrum?

    And because difficult child has never had any supports or therapies to address autism issues - are all these problem "behaviors" learned coping skills?

    And - my biggest concern - at this point, does it matter what the technical, actual diagnosis is? difficult child has been through so many years of "therapy" that she knows all the right answers, all the right things to say...does the treatment just need to deal with difficult child's current issues as they present?

    Has it really become an emerging personality disorder because of all the years of incorrect treatment (think "behavior charts") and should be now treated as such?

    Or should I be pushing for a re-consideration of possible autism, even thought hat has been "ruled out" by various specialists over and over for the same non-reasons as listed above?

    I'm confused...

    and frustrated...

    and feel like I just keep going over and over and over through the same circles. autism/behavioral....autism/behavioral....autism/behavioral...

    And the first thing the caseworker is doing is sending us somebody to help design a new Behavior Chart...

    I don't know....

    What do you think?
  2. AnnieO

    AnnieO Shooting from the Hip

    A new behavior chart?

    OK, I got the rest of it. But this one got me. Behavior charts DO. NOT. WORK. for your difficult child and for Onyxx. We've been over and over and over them.

    Well, they just don't get it, do they.

    FWIW, I suspect Jett is on the spectrum, too. But the testing said ADD, Learning Disability (LD), and Fetal Alcohol Syndrome (FAS). So... Knowing you know difficult child does not have Fetal Alcohol Syndrome (FAS)... Sigh.
  3. susiestar

    susiestar Roll With It

    I don't know. maybe reading books about aspergers and autism would help by giving you ideas for new things that might help. But it might not. I know that I would have been diagnosis'd on the autistic spectrum if what is known about girls was known then.

    Sadly I don't know that it will matter much what tools she is taught/given until she chooses to use those tools. we can give them a Lowe's worth of gardening/landscaping tools but we cannot amke them plant flowers or mow the yard with them, Know what I mean??

    I don't have enough experience to know if new techniques would help her now, esp as distorted as her thinking seems to be. on the other hand, can it hurt to try some new things that work with kids on the spectrum? either way, the behavior chart isn't going to work but the social workers each have to relearn that lesson with each kid.
  4. Marguerite

    Marguerite Active Member

    We've got the same problems re diagnosis with easy child 2/difficult child 2. She & I are convinced she has Asperger's. Her pediatrician, on the other hand, says she doesn't have Asperger's because she makes good eye contact with him. As she says - "But I KNOW him, plus I really work at making eye contact with people." Both boys make good eye contact with the pediatrician too.

    As for the sex - she was often inappropriate physically, always seeking physical contact. That's why we call her a cuddlebunny. But the darker side of it, she is a very sensual creature and we knew would find sex very attractive. She has not been promiscuous, but instead serially monogamous. However, she was very quick to move into a sexual relationship with her first boyfriend. Thankfully, she was 17 by then. But she picked the wrong boy, it was a disaster for him especially. She is such a sensual creature that the poor boyfriend was going around with a look of stunned delight on his face... and there was no way we could prevent them sleeping together. So I got her onto contraception and regular pap smears as soon as I knew it was necessary. A good thing, too - she's had positive pap smears and had to have a colposcopy a couple of months ago.

    Girls do present differently with Asperger's and it can be very difficult. easy child 2/difficult child 2 is pretty much untreated, other than medications for diagnosed ADD. We've got no other diagnosis but I know she has extreme anxiety, she has Obsessive Compulsive Disorder (OCD) issues (has been obsessed with the feel of fur, and silk, to the extent of making a fur fabric folder for school and then carrying it in her arms, cuddling it, to and from every class). She was obsessed with teddy bears, used to say she wanted one of every kind of teddy in the world. She was serious about it. She still sleeps with her oldest teddy bear and always the same pillow case. Both travel with her wherever she goes. Even now she's married, she still sleeps with her bear. It's cute - she often gets up before her husband, so HE then cuddles the bear!

    She's a bundle of emotional hurts, catastrophises everything and is in floods of tears and can't see her way out, when things aren't perfect for her.

    Treatment - she is learning, with counselling, to find her own way. I still am involved in her treatment but she is cooperative (to a certain extent). She gets resistant when she feels we are pushing her in a direction she doesn't want to go. But she is willing to admit she needs help. Having an Aspie diagnosis formalised would help her accept this better.