Mad at the system

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Hi new poster here. Thankfully I found this site I am already enjoying reading other posts and think that it will be much more helpful than others I have been visiting.

My daughter is 3. I have always known from the time that she was very little that something was different. Didn't know what it was until I started to research different things more. (psych student) I have been fighting with the doctor for about a year to have her evaluated and finally just went and got her evaluated without doctor's approval.

Her evaluation came out that she ranks 45 on the GAF scale. Which I am not even sure how that applies because I have a friend's kid who was evaluated by the same psychologist and he is extremely non verbal and not independent at all 6 months younger than my daughter and he recieved a 52 GAF. So I am wondering how that scale works. I am also confused because the psychologist that evaluated her said that she was a high functioning autistic but then whenever I recieved my eval papers it was a pdd-nos diagnosis? Not really sure just need someone who knows to explain this to me. I have asked the behavioral therapy people and they have no clue how to decifer the GAF scale.

Speech therapy makes me angry, AJ can say different big words (wonderful, goregous, beautiful, amazing) but struggles on a lot of the little words. Speech has been teaching her how to say different phrases like on top of, or want milk. But not really working on little things like how to sound out words she doesn't understand. We go around the house mainly saying jargon all day, attempting to communicate with me but I look at her sideways and ask her to repeat herself over and over. But we have had positive moments in this struggle, but I am doing the work at home with flash cards and different phonetic sounds (I have been doing this since she was 1) and it's finally working after 2 years! But not really the speech therapy.

I am also disappointed with the behavorial people. The lady that comes to my house told me even what I teach you could not work. This has given me great faith in these people. So I have been trying to do research on calming down the tempertantrums and the fits on my own, but I get confused and frustrated because nothing has been able to work for me. And mainly her tempertantrums come whenever I am asking or telling her to do something she doesnt want to do. I mean I can deal with the routine tempertantrums like if I dont put her chicken or food in the specific place she wants it, I just move the food to the desired place and she stops. But the oppositional tempertantrums I can not control, and the only little advice the behavorial people gave me was to set a timer and tell AJ whenever it goes off she has to do what you ask her to do. That did not work at all. I know some of these things are typical of a three year old. So I am just frustrated and angry and looking for help or suggestions.

One of our adult AS member wrote a book, free for download here http://www.ASDstuff.com that I think you may find helpful in answering some of your questions, particularly on the tantrums. I think sitting down and reading this book would be a good place for you to start.

I don't know much about the GAF scale, but I can say that I've understood PDD-NOS to be the standard diagnosis at your daughter's age. I think the choice of that term reflects a bit of uncertainty at this point as to exactly where on the ASD scale she is, which is quite appropriate given her age. They may believe she is HFA, but they actually cannot yet be certain. So, they write down PDD-NOS and leave a window for time to make the precise diagnosis more clear.

With speech therapy, you have to remember that what they consider to be important goals for your daughter's age, and what you consider to be important goals, may not be the same thing. I would suggest asking for a meeting with the therapist to review your daughters assessment and therapy goals. Let them explain their choices first, and then ask questions. I've found it be very defined, as to what each child should do at age 2, 3, 8, 12, etc., and most of it involves building blocks to speech development that I would never have intuitively realized were considered important.

More than anything, your daughter needs you to tune into her, and shape her world for her needs. Focus less on what each therapy might provide, less on a checklist of skills, and more on figuring out who she is and what makes her happy.

And ... welcome to Wrong Planet. This place has challenged many of us on how we view our kids and what they need, and I have found it to be invaluable. I don't think I could have the generally happy and centered young teen that I do without the input I've received over the years from AS adults.

I couldn't really say much about the tantrum without some more insight into what she is having them about.

you know that 3 years old are well known to be a bit oppositional , she will probably mellow down as she grows up, with all the support she gets.
remember if you can to give her an hour or so before bed where you don't push her to communicate perfectly and make sure she knows she is understood in case she wants to communicate something important, she is still very young and never being understood ( i know it's not the case, but she may percieve it like this) can be stressful when it's non stop.
the timer: make sure it is low volume, and if she cannot hear it it's even better. you could show her on a clock at what time she needs to do this and that, and let it in her eyesight. when the time comes you come to her and show her the time and remind her what you asked.
of course she will still be unwilling lol, but at least the stress from unexpected ringing reminding her of something she never wanted to do in the first place, that might bring the meltdowns, would be eased a little....just a thought.

autism is a spectrum disorder that is made up of different diagnosable pervasive developmental disorders, most commonly classic autism, asperger's syndrome, and pdd-nos (pervasive developmental disorder - not otherwise specified). "high functioning autism", altho widely used, isnt an actual diagnosis. the high functioning just refers to where on the spectrum the person falls, and usually its just to imply whether its on the lower end or higher end. usually when you see HFA or LFA, its used in conjunction with classic autism, as thats where we see the most variation in functioning levels. you dont usually find low functioning autistics in asperger's or pdd-nos. pdd-nos is an actual diagnosis usually considered to be on the high functioning end. so your daughter can be both pdd-nos and a high functioning autistic. they usually diagnose pdd-nos when she has autistic traits, but does not fulfill all of the diagnostic criteria for classic autism or asperger's.

dw_a_mom gave you a great suggestion, talk with the speech therapist. find out what the goals are and how they plan to get there. keep in mind its speech/language therapy, not just speech therapy. for a lot of autistics, the big words arent the problem, its how language fits together and how we use it that give them problems. they can have difficulty with "wh-" question words, such as why, who, where ("on top of"), etc. communication is usually the big goal, not focusing on how to sound out all words. it sounds like the therapy right now is focusing on communication needs.

for the tantrums when asked or told to do things, are these things like cleaning up, bedtime, brushing teeth? she may respond well to a visual schedule. use pictures to develop a schedule for when she is required to do things, such as 8 pm Bathtime (picture of bath), 8:30 Brush Teeth (picture of brushing teeth), etc. autistics usually do really well with visual schedules, you can fine tune how detailed it needs to be as you go along. some kids require a very tightly scheduled routine, some can handle things more loose. you can google autism visual schedule to get ideas and websites.

Meltdowns are a major issue for us - I'll re-state DW's suggestion to read Tracker's e-book, and I'll add a blog post by another WP member - http://chaoticidealism.livejournal.com/84655.html These have been very helpful to me in understanding the why of a meltdown.

As for the what to do about it, I did some other research a while back and found this rather dry article that's posted after the list of links (which are worth wading through if you've got a lot of time, but some are better than others ) http://www.autism-pdd.net/testdump/test17134.htm I was helped particularly by the list of A-level, B-level, and C-level demands.

As a parent, since I got the same kind of response from DS whether his hair was on fire (no, that never really happened. just an example) or whether he didn't like the color of his plate today, I found myself responding to everything the same way. It's really important to divorce yourself from the feedback and make decisions about what matters and what doesn't - and to be sure you are really, really clear to your child and all his caregivers about what is and is not an A-level demand.

I liked this video, too, linked on that page: http://www.autismspot.com/videos/Managi ... -Meltdowns - but I haven't had a chance to try it out (I don't know if it would work for a 10yo, but you probably have a shot with your 3yo) I have to admit watching it with a certain amount of envy towards the teacher...it's not so easy to detach when it's YOUR child.

Good luck!

PDD-NOS just means that she doesn't meet the exact criteria for any of the other PDD diagnosis such as Classic Autism or Aspergers, but rather she has symtoms from several categories. PDD-NOS has nothing to do with functional level (as in high or low). Some children with PDD-NOS are extremely high functioning, some are extremely low functioning.