so many doubts

Avatar for candksmom
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Registered: 03-27-2003
so many doubts
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Thu, 10-02-2003 - 2:26pm
Hi, my dd, almost 8 and in 3rd grade, was dx with Asperger's a few weeks ago. So many of the "symptoms" of AS fit dd, even the physical things that are associated with it like being incoordinated, and goodness knows, she has virtually no eye contact - she shies away from it and if people try to force it on her, she gets really agitated. I've read so much about AS, my doubts come from two things. The first is that the evaluation and diagnosis seemed so quick. The doctor did some tests and explained why dd had "typical AS" responses, but in the report, didn't refer to any specific tests. We collected a lot of paperwork over the course of dd's life, so I understand that the doctor didn't have to repeat some things - there were already pragmatic language scores (which are extremely low), IQ and achievement test results, Connor's results, and so forth. But when I read on this board about tests specific to autism, I really wonder if the evaluation was complete. I really think that dd has trouble reading social cues but I do think she understands other people's emotions to some extent. Sometimes she says the sweetest things, like "I'm sorry that you are upset," without her being told that I'm upset about things or my showing it in an obvious way. She talks with friends about their areas of interests, and she comes home and tells me about her friends' interests, even when the friends' interests aren't the same as hers. I did tell the doctor about these things, and she said that dd shows the ability to learn to recognize these things. The teacher and school counselor worked with my dd a lot last year about making conversation, talking with friends about interests, and recognizing their feelings, maybe that's showing. I thought the things they taught my daughter were really wonderful. My other doubt is missing pieces. Dd has never had OT or PT or visual processing or sensory evaluations, and I worry that there are missing pieces, things we should be doing with dd that would help her. Her reading still seems so rocky. She tests out at grade level, but she frequently loses her place when she is reading, and doesn't really seem that fluent to me. How can you tell if you are just in denial, that you are having trouble coming to terms with a dx? I know this dx gets her the help she seems to need in school, so I shouldn't be questioning it. I also have so much self-doubt about our ability to give my dd the help she needs, especially since I see in myself some of the same traits, and although dh actually asked about Asperger's a year or so ago, he's in avoidance mode at this point. Also, once you have a dx, what should you expect? The doctor told us to take dd to someone who could give more detailed recommendations, but we're having trouble finding someone who is taking new school-age patients, we're doing the waiting list thing. I'm sorry if this is so long!

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iVillage Member
Registered: 03-26-2003
In reply to: candksmom
Thu, 10-02-2003 - 4:33pm

Hello and welcome.


First, although there are some specific autism type tests, even those are not fullproof, particularly when the child is on the milder end of the spectrum.

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iVillage Member
Registered: 07-11-2003
In reply to: candksmom
Thu, 10-02-2003 - 4:46pm

Hi, and welcome back to the board.I remember seeing you here a few months ago. :)


First of all

iVillage Member
Registered: 03-28-2003
In reply to: candksmom
Thu, 10-02-2003 - 5:15pm
I just want to tell you, I know exactly how you feel! Also, I couldn't sleep very well until I got to the bottom of my sons issues. I'm not saying diagnosis shop, but it does seem to me that you question the thoroughness of your daughter's evaluation. You might want to get a second opinion.

What tests did this doctor give your daughter? I know my son got the Aspergers Spectrum Diagnostic Scale (ASDS), and he scored <1%. he also got the Gillium Autism Scale (GAS), again, <1%. And the Vineland. On that, his profile showed he was developmentally behind his peers socially. he is 6, but acts more like a 5 year old (he is an old 6, and that would be a young 5 year old!), but not consistent with Asperger's or the Autism Spectrum. However, I was told that the actual dx comes from the PhD or group coming to a conclusion based on how they interpret your child and the data more then anything else. (Someone help me out on that one, cause I didn't get it then, and still don't).

I guess what I am trying to say is, you know your child a lot better then anyone else, except, maybe her father. If you still have questions, and the PhD hasn't answered them,then you need to keep asking someone else.

I think, under IDEA, if this opinion came from the school, and you have questions, they have to pay for a second opinion. But, if you don't want to rock the boat, and decide to seek a second opinion privately, then contact the autism society chapter in your area and ask for a good referral. Believe me, in my case it was (a lot of) $ well spent. Your daughter could be on the spectrum. It is, after all, a spectrum, but if you keep at it, maybe you can get your questions answered. Then, if you are like me, you will be able to sleep at night. I mean, I got to the point I was so willing to accept an Autism dx, I came across as being disappointed when I didn't get a PDD-NOS! Just thinking I was in denial was a lot like parental purgatory. No, it was purgatory! Actually, it wasn't the dx that bothered or didn't bother me, it was those questions left unanswered!

Sio

PS: Even though Liam doesn't have Asperger's, he sure looks like he does. He can read social ques, yet he responds inappropriately. (Think Jim Cary). He isn't too big on eye contact, and, like his dad, he is slow and awkward and, well people assume he is clumsy (but, actually he isn't). But, on his IQ, his strengths were comprehension, abstract reasoning, and analytical thinking. Also, he is not into structure and has no rote memory. He does stim! If a plane flies by, or he thinks he's going to get in trouble he will flap. (this is funny, but I've noticed, when he flaps, he holds great eye contact). I could go on and on! If you want to know more, just do a search either on Liam or on Sio.

I just want to make one comment on what Candes said, and that is, maybe if the PhD did either the ASDS or the GAS, it might make it easier for you to see what she sees. Also, one thing I have learned over this year, (yes, I'd be that parent Candes was talking about), is I stopped being scared of autism. Liam is who he is, and no dignosis is going to change that. So, if you find your daughter is on the spectrum, your expectations for her shouldn't change.


Edited 10/2/2003 5:27:12 PM ET by sio64

iVillage Member
Registered: 06-25-2003
In reply to: candksmom
Thu, 10-02-2003 - 7:44pm
>>How can you tell if you are just in denial, that you are having trouble coming to terms with a dx?<<

That is such a good question!

For some people, it's easy. They feel like they could take the description of the condition, cross out the condition's name and replace it with their child's name.

Most people have to wrestle with it a bit, though. I thnk Candes' suggestion is a good one. Give it some time. If, after a few weeks and some research, you feel the DX is appropriate, great. If you still feel there is a piece missing, you should go looking for that piece. The piece could be your acceptance, but I think somewhere in your heart you know if the description adequately matches your child.

A denial story, for comparison.

I had a friend, a doctor, who had difficulty accepting her own child's DX. She dragged that poor little girl all over several towns looking for a different answer than the PDD-NOS one she had been given, but got told the same thing time after time. She refused to place her child in a school, holding her over in the special preschool (who had luckily just added a k and 1 grade), until she had a 'diagnosis'. Still the specialists told her PDD-NOS.

I don't know how it happened, if she was worn down by the repetition, or something happened to shock her into belief, but over a year (and I don't know how many specialists and evaluations)later, she finally accepted her daughter is PDD-NOS, and they both moved on.

For her, the warning signs had started at 17 mos, and her daughter was almost seven when she finally accepted the dx.

Now *that's* denial.

Welcome to this board. It is a good place. Good luck with everything and let us know how it goes.

-Paula

-Paula

visit my blog at www.onesickmother.com
Avatar for maresgood
iVillage Member
Registered: 03-27-2003
In reply to: candksmom
Thu, 10-02-2003 - 10:22pm
Hi, My 11 yr. old dd wasn't started on the road to diagnosis till 4th gr. I followed the recommendations of her teachers in getting the diag. I took her to our peds & 2 child psychologists. I am an R.N. & had never heard of A.S. I was thankful for the diag. because she had issues going on from pre-school that I couldn't figure out! The motor clumsiness, the obsessive behaviors, the social problems, the fear of loud noises, rough clothes, getting her hair combed, showers, etc... It finally fit like a puzzle & I was so relieved to get a handle as to what was going on. Good luck to you & your dd. I can understand where you are coming from, as I was there 2 yrs. ago! Take care, Mary Ann
iVillage Member
Registered: 03-28-2003
In reply to: candksmom
Fri, 10-03-2003 - 10:18am
One thing I did was read a lot of published abstracts and "lists of common traits". This helped, but I never really felt like I completely got a picture of what they were talking about. For example, the obsession thing. Liam loves cartoons, and he will talk to you about them tell the cows come home. I would say "self, is that an obsession?" Then I would think of the four year old down the street who loves trains. Or, rather, the train he is carrying on that day from his train set. (Usually of the Thomas variety). There is no cartoon, or part of a cartoon that Liam is interested in that way. So who is obsessed? Liam or Andrew, or both, or neither? I knew I didn't actually get this aspect of those lists of traits. So, I was just left with the question! (Very frustrating).

Then, one day I was in Barns and Noble, and there sat a book on display: *Asperger's Syndrome* by Tony Attwood. This book brought all these commonalities down to a level I could understand. I'm not saying it is the be-all and end-all of books on Asperger's, but it sure put things into perspective for me!

I also had a lot of questions about the diagnostic criteria used to determine if a child is on the spectrum from the DSM IV. (I'm actually a counselor who works with adults with disabilities, so I've referred to this book a lot! But I AM NOT a diagnostician, so when I would refer to it, it would be to get a better understanding of a person after they received a dx!) Even though I've been a SAHM for 5 years, I still have my own experience to draw on. Still, I would look at the criteria for Asperger's, and, quite frankly just have a lot of questions! T. Attwood's book did a great job of saying "this is what that means."

Anyway, there are lots of great authors on autism and, specifically, Asperger's. A lot of their books are written for parents. Have you looked at anything like that?

Here is the disclaimer (I'm stealing from Candes) Once you've met a person with Asperger's, you've met a person with Asperger's. Which is to say, they are all different, (part of the spectrum human).

Anyway, I'm done now!

HTH

Sio

Avatar for cl_ntajd
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Registered: 03-19-2003
In reply to: candksmom
Fri, 10-03-2003 - 12:52pm
I am so new to this as well and there are days when I think are we doing enough for him, especially when
     
Avatar for candksmom
iVillage Member
Registered: 03-27-2003
In reply to: candksmom
Fri, 10-03-2003 - 10:04pm
Renee, thank you, it's really reassuring about experienced clinicians. We know other families who took their children to the same doctor, and they had a lot of good things to say. Dd's classroom aide said something today that helped to clarify things, that dd often seems not to be paying attention because she looks or turns away, but that now they know that dd usuually knows what is going on.
Avatar for candksmom
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Registered: 03-27-2003
In reply to: candksmom
Fri, 10-03-2003 - 10:17pm
Candes, thank you for the wealth of information, and the welcome! You explained a lot of things that I've wondered about. I've been reading the posts for several months, just haven't posted much because first we were waiting for the dx, and also b/c we're so new to this all. There has been so much great information, so many times, I've felt the same way as many posters, or had similar experiences. What you said about time clarifying things makes so much sense. That's what happened after dd was dx with ADHD. We had so much trouble with that one, kinda gave up for a while, and hoped that a new teacher and a new school year would sort things out, and some things became more clear, like dd really is paying attention but she makes almost no eye contact and rocks and fidgets so she seems to be in her own little world. Dd had a rough day today, one to erase the doubts. I went back over the paperwork and the notes I made after the doctor's appointment, and feel a bit more secure about the diagnosis. Thank you!
Avatar for candksmom
iVillage Member
Registered: 03-27-2003
In reply to: candksmom
Fri, 10-03-2003 - 10:23pm
Thank you for the information! You also gave reassuring information on the CAPD board when I posted a question there in August. I really admire the way you've pursued making sure to get the right dx, even when others thought they knew what was going on! My dd has previous dx of speech impaired and ADHD, but we definitely knew those weren't complete. Dd is in the process of getting the CAPD evaluation, she's had an initial screening. Whatever the outcome, I think if we don't do that one, I'll always wonder, and whenever things come up I'd wish we'd had the testing! I'm hoping to get an OT evaluation also, should find out about that in the next few days. Thank you so much!

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