Where Do I Go From Here

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I am new to this Site.
My daughter is 11 and her Aunt has brought Asperger Syndrome to my attention as a possible answer to some of the questions we've had about my daughter.... alot of the symptoms seem to fit. We have a couple of books, and I've been searching the internet for information, but where do I go from here? Do I ask the school to have her tested? Do I ask her Doctor to have her evaluated? Does she need to be diagnosed? Officially? I'm totally lost. If she does have Aspergers..she has a very mild form. (I apoligize in advance if I use any incorrect terms....I'm new to this!) Some of her 'symptoms' have been...she does have an unusual 'gait' and walks very 'rigid', she just recently learned to tie her shoes, she talks in a monotone voice, extremely intelligent about some things...struggling in other areas...an almost photographic memory, sensitive to sound, social problems...I love her to death, but I've known something was not quite right for a while, I've asked the school to test her before..and they've gone from one thing to another...at the beginning of the school year they want to test her for a learning disability, by the end they want to test her for GATE. I'm just lost. If someone, could just point me in the right direction I would appreciate it!

Welcome! I'm glad you found this site.

I'm no expert, just a parent of a 12 year old boy dx'ed PDD-NOS which is similar to Asperger's. So, take what I say in that frame of mind.

If you decide there is value in an offical dx (diagnoses), a psychiatrist with experience with Asperger's is necessary. Some people feel strongly that the dx is, in itself, valuable. It offers a concrete explaination of why one is a bit different and a sense of closure. Others see less value. I'd guess almost half the people here are undiagnosed. To me, the dx is important if your child needs accomidations in school or is having emotional or behavioral problems.

So, if you don't mind telling us more, how is your daughter doing in school and home?

Nonverbal learning disability is often thought of as "a little bit of Asperger's." This is one of the best reads I know of NLD and schools. You might find it interesting. http://education.state.mn.us/mde/static/001566.pdf

Has the school done any test? Do you want them too? Just so you know, my child spends 1/2 days in a program for Aspies/Auttie children (Aspie=person with Asperger's, Auttie=person with Autism), and half day in mainstream. He is pulled from the Aspie program to work on his dyslexia/dsgraphia (learning disablity) 45 minutes a day and one of his mainstream classes is in the GATE area. So, it is possible to be learning disabled, gifted, and Aspie all at the same time.

Again, welcome.

BeeBee

Ah, I forgot. He also is pulled for weekly classes with the school psychologist in social skills. He was orginally in a "class" with mainstream children who needed help in this area but it wasn't enough support for him so now he has one on one time. You might wish to see if your school runs social skills class. Many do.

Thank you so much for replying!
Her grades are pretty good. Mostly A's and B's. Except spelling. This quarter she got a D-. It always surprises me because of her memorization skills..she can see or hear something once and retain it for months or years, I can't figure out why that doesn't apply to her spelling words.
The school has not tested her for anything like this.
In her State tests she scores above average in every area.
She claims school is hard. Even overwelming. It's hard to get her to go. She has friends, and doesn't appear to be getting 'bullied', which is something I hear alot about AS people (children).
I had a parent teacher conference a couple of weeks ago, before my sister brought AS to my attention and the words her teacher and I used to describe her behavior in class is 'casual', 'lazy'...he said someone could be screaming out of control right next to her and she seems totally unaware of it.
I think she is very gifted in many areas. She's an awesome artist, song and story writer...she's a beautiful, sensitive little girl and I totally enjoy her company. I think the only reason I would want a dx is if I knew for sure she had AS I could help her in areas she needs help. I feel like it would be like anything else, the more information we have about it the better it will be for her.

I agree. More data is usually more helpful than less.

I would look into your insurance coverage then and see what coverage you have for a neuropsychologist. When my older son (non AS) was evaluated it cost $1,500 and insurance picked up about 1/2 of it. The other half wasn't covered because the insurance considered it educational in nature instead of medical. It can cost more or less of course but thats a rough idea. The psych took a family history, ran a battery of tests (IQ and achievement) and talked to "J" for about an hour. The resulting report was a decent look at J's strenghts and weaknesses with suggestions for further action.

The school needs to test for "a learning disability in the written expression area" for your daughter. You probably want to ask them for a full LD testing. I'm thinking about the timing of that though...if you want the psych first or not. Let me gather my thoughts and discuss that tomarrow, if that's okay with you. If they find a LD in spelling they will try to pin point where the breakdown is and work on that. D, for example, has no phentic awareness at all.

If I may ask, how does she do on report writing outside the spelling? How is organization of matterial?

BeeBee

Report writing was one of her weaker areas..it came up in the parent conference that she tended not to give her own thoughts on the subject but more or less just copied down what was already written. Once this was explained and brought to her attention, she does much better. It was almost like she didn't understand what was expected of her.
She's not very organized, but my opinion, it's not anything out of the ordinary for her age. She 'can' if she wants to. She's not 'unusually' disorganized.
I like the idea of having someone outside of the school diagnose her before getting the school involved. For some reason I'm worried about her being 'labeled'. I don't know if that's unrational or not.

I don't think that's irrational at all. Our society pays a lot of lipservice to being a 'level playing field', etc., but a lot of discrimination goes on in people's minds when they know that you're neurologically atypical. It makes people uncomfortable, because it's an area of ingorance for so many.

I got my diagnosis from outside the school, and I highly recommend that approach. At schools, there can sometimes be an advesarial stance taken to evaluating a child as AS or LD, because they seem to take it that they have not done their job correctly, since you have demanded the evaluation. An ouside psychologist will probably have more time to spend with you to answer questions and concerns.

It sounds like your daughter is a likely candidate, from what you've described. I wouldn't worry too much about "labelling" her in the long run. A diagnosis is only a label if it's allowed to become one. Otherwise, a diagnosis can be a very powerful tool in managing her education, her environment, and her social life. Knowing where she needs to compensate will save her a lot of pain and misunderstanding with herself and others.

I would say don't emphasize the diagnosis, and let her grow into the knowledge of her differences. She'll want to know more eventually, and it will be there for her.

Good luck, Mom!

BeeBee,

I also carry diagnosis of PDD NOS, what sorts of characteristics does your son have? Im just interested to know because PDD NOS is such a broad term, and I don't know too many other people carry the dx PDD NOS.

whoops post above is mine ^

You know what, Jman? Until I read your post I never wondered *why* it was PDD-NOS instead of one of the other PDDs.

He has significant issues in...
...eye contact with people outside the immediate family. As a matter of fact, even now he will cover his head with his arms if forced to talk to a stranger.
...body posture and position. He walks with a odd gait and his arms hang funny. He still will, once in while, walk into a door jam or sit so far on the edge of a chair he falls off.
...peer relationships are nonexistant.

To a lesser degree he has issues with...
...preoccupying interests
...inflexibilty in routines.
...hand flapping but only if really, really upsest.

He had boarderline language delays and required years of speech therapy for a laterial lisp.

Self care is somewhat lacking. He can get by but probably would only bath or brush his teeth once a week. He just needs to be reminded.

Is that kinda what you were looking for?

ya kind of I had a bit of a speech delay and some aspie and autisitc traits. Self care never was much of a problem for me though. I also had a few friends growing up.

He had more friends in elementary school. And he will play with the neighbors or his brother's friends. Its just that now, in middle school, he moves from class to class with new kids all the time and it seems like he doesn't spend enough time with any one group to make friendships. He's been in the Aspie program since the start of the school year so a little over two months. He sees those kids for 3 hours a day and is starting to make some friends. He has someone he calls his friend but he doesn't know his name and has no interest in seeing him outside of class.

Maybe its the speech delay. Not enough of a delay to call it Autism, too much of one to call it Asperger's.

BeeBee

I think I say this every time you describe him, but that sounds almost exactly like me.

Hello,
Don't know if this will help but here goes. My son was mis-diagnosed multiple times. The person who finally diagnosed him was a CHILD psychiatrist who had experience with working with aspie kids. Getting a diagnosis helped a lot. It opened doors for special programing in school which he was not eligible for without a diagnosis. It also helped to have him understand that he was not just weird. He was glad to know what it was and that he wasn't just lazy, stupid, fill in the blanks with whatever others have called your child. It also helped me because then I knew what to expect and what not to expect. My expectations of him became reality based and attainable. This helped loads. It also helped the doctor prescribe appropriate medication to help him. This has made a huge difference in his functional ability. My son is now 18 and a freshman in college. He was diagnosed just after 6th grade. My son continues on medication because he says it makes his life easier, this is now his choice. He is living indep in the dorms at college and doing well in school. There is a future for these kids. Don't be discouraged. Pink

Thanks for posting that. He could do worse than to grow up to be like you.

BeeBee

My son was also mis-diagnosed. When he was three, he was describes as having a severe language impairment. Then we found out that he had hearing problems due to recurrent severe ear infections. Then he also had the following, MBD (minimal brain dysfunction), ED (emotionally disturbed), SED (severely emotionally disturbed), PDD, ADHD, PDD-Nos. We knew nothing about Aspergers Syndrome. He was tested by Psychologists, Psychiatrists, Neurologists. Finally, when he was 9 years old, we came across an article describing Aspergers and it was like we were reading about our son. We asked the Neurologist about it, and he agreed with us. But basically, we diagnosed our own son and all the professionals then agreed. It was a breakthrough for us because it then allowed us to work with the school in getting the proper services for him. But for years it was very frustrating.

Aspiedad2