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makelifehappen
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05 Feb 2007, 1:56 pm

Where do you really begin with all of this?! !

I have questioned on and off over the years, whether or not my 8 1/2 year old daughter had aspergers, only to hear such things as "but she makes eye contact with others" or "she doesn't have any stimming behaviours such as hand flapping" or "but girls dont get aspergers" or "there is no way, she would be more Bill Gates"...so we have been every route possible to try and find answers to my daughters struggles only to come up with 3 seperate diagnosis, that all fit the picture of aspergers and I feel like I am back to square one :( *sigh*

Family dr's, child neurologists, naturopath dr's, gynogologists, GI specialists, anxiety disorders clinics, psychiatrists, occupational therapists you name it, we have been there.

Issues such as anxiety, obsessions with specific things (counting motorcycles into the thousands), getting stuck in particular activities (could spend 8 hours on end drawing, colouring, setting up thousands of beads up in beautiful patterns etc), difficulty shifting activities (needs preparation for such things well in advance), social difficulties (1 single "friend"), strong sense of justice (always finds reasons her classmates/friend/teachers/family are not being morally correct), inability to initiate conversation, takes forever to warm up in social situations and will avoid going places, need to check with us before doing things, need to have us there while she performs simple daily routines and functions, need to be asked to do simple tasks repeatedly (difficulty following simple instruction), picky eater (gags/refuses foods outside of preferences), prefers certain textures, hieghtened sensitivity to noise, scent, tactile input, fine & gross motor issues, spatial awareness issues, doesn't realise her own strength and is very rough at times, awful temper tantrums, blames self for EVERYTHING, yet cannot understand anything that isn't in literal terms("but you said to do this and I have done"), refusal to do things, that she would simply prefer not to do to the point of controlling the family ("I am not going out, you cant make me", defying the teacher (refusing to participate in classroom lessons, group activities, gym class, etc) would prefer to stay home to anything else, will always opt for the easiest of two choices (even if it means losing priveledges), poor self help skills, poor hygiene, withholding bowel movements (resulting in severely impacted stool), yeast infections, has been placed on a GF/CF diet that she responded well to (long before we had any idea that this could be related to children with autism)....

*sigh*

So, she has been giving a DX of having Generalised Anxiety Disorder, Obsessive Compulsive Disorder, with exaggerated temperment issues and Sensory integration issues...and we are seeking out a 2nd opinion and hoping for a reassessment for Aspergers.

She was placed on an SSRI (which we were quite reluctant to do) last month. The Dr's believe that she simply wasn't responded to our efforts & the cognitive behavioural therapy and didnt feel that she would make any significant gains without the meds.

Trouble is...we are not 100% confident that the Dx is accurate.

And not to say that having a dx of aspergers will end our fight for our daughter, but it would help to understand what we are up against and perhaps we will be better equipped to understand accept that some things are simply beyond our control. As of now, we feel like we are taking stabs in the dark, toying with CBT, Parenting stategies, reward systems, disicplinary actions etc, still trying to come to terms that she is a child with special needs, but never really knowing if what we are doing is causing more harm than good.

We are having the worst time finding a balance and have found ourselves still hoping that she will one day be "normal" (whatever that is :roll: ), while we continue to fight the fight, trying to correct her behaviours & teach her the proper way, we are only just realising that she may never be "normal" and simply will have to accept that she has special needs.

I guess it is a matter of choosing our battles wisely to some degree, but at what point do we say "ok, our daughter will simply always gag/vomit/refuse certain foods and stop trying to get her to make other choices?" or "our daughter will always hate the feeling of tags and threads in her clothing and just continue to cut them all out of her clothing?" or we just need to accept the fact that there will never come a time where she will not need promting to get simple daily functions done?

Thank you so much for reading, if you have made it this far... we really do appreciate being able to vent and welcome any responses.



daisydiana
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05 Feb 2007, 2:36 pm

Hi,
I also have an 8 1/2 year old boy with aspergers. He does make some eye contact,not much but(some) it depends on who it is usually he makes more eye contact with people who knows. A lot of things you described about your daughter is the same for my son. The temper tantrums, lining up things, for my son it is rocks ususally. He has a lot more help in school since he got the diagnosis 7 months ago,which is great. Before that he was ADHD , and with that he had no help, he was just treated as an unruly kid, which i knew in my heart he wasn't, he is a great kid. He is just different, he hates crowds and doesn't like to go anywhere outside of our home. When we absolutely have to go to doctors appointment for example, we have to prepare him in advance and it is ususally the subject of choice leading up to the day. He talks non stop at times about something of interest to him and will get upset if told to stop. He is very anxious about unfamiliar places and events, basically we never go anywhere as a family cause he doesnt want to go. He has huge meltdowns when told( no) he cant have or do something he wants and usually will keep it up for a long long time(very headstrong).
Feel free to pm me i will answer any quuestion i can for you, but from my experience as a mom it sure sounds like your daughter is aspergers.



aspiesmom1
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05 Feb 2007, 3:04 pm

Unfortunately it sounds like your daughter was clearly dx'd by someone unfamiliar with ASD's (the comment that girls don't get AS was a cincher).

Everything about the AS dx is much like a menu in a chinese restaurant. (The closest analogy I've found so far). You pick two things from column A and one from column B and voila, you have dinner. Well AS is a lot like that. In other words you don't have to have everything on the list to be AS.

The eye contact thing - it's often about anxiety levels and concentration level. The less of both, the more eye contact you'll get. It's a fallacy to say that all kids with true AS never make eye contact - it's like the rest of their social skills if you talk to a dx'd adult - its just something they don't know how to do well - how long, how often, when, etc.

Same thing with the stims. If you see them it is going to be more when the anxiety level is high, or there's an SID issue going on. And just because you don't recognize it doesn't mean it isn't happening. Not all stims involve hand-flapping or pulling out hair. Finger tapping, whistling, spinning on a chair, skin-picking - you'd be surprised at the range of behaviors that fall under the stim category.

If you can get the accomodations she needs without a proper dx then you may want to just use it as a work around. (I strongly recommend having the school provide her with a daily schedule - it helps the anxiety level greatly).

Good Luck!


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keats
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05 Feb 2007, 5:01 pm

Girls have AS, I ought to know I am one (albeit a bit long in the tooth at 44 :) )

The real deal with AS and girls is that girls are not diagnosed as often simply because they don't stick out as much as the boys do. Since generally girls are not unruly and disruptive (no offense guys), they pass more easily.

There is theory as well that AS expresses differently in girls than boys--so you have the scenario of symptoms observed in boys being used to assess girls (I agree with the analogy above of the Chinese menu--the categories of symptoms are simply that--symptoms clinicians have noted in individuals they have seen in their practice.)

There's a book I got recently that I thought was excellent and you might like:

Tony Attwood, et al Asperger and Girls -- it's got all sorts of excellent material on AS and girls, inlcuding life stage issues, etc.

Tony Attwood also just came out with an updated and excellent guide to Asperger's: The Complete Guide to Asperger's that covers boys and girls very well. He's a clinician and excellent on the subject.

Hopefully, this will help. There is a lot of weird misinformation swirling out there, but thank god folks like Attwood have actually bothered to sit down and really learn about Asperger's from kids and adults, of both genders, who have it.

-- keats



makelifehappen
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06 Feb 2007, 12:02 am

Thank you so much for your responses.

OK, so new question...

with a diagnosis of anxiety disorders, the expected form of treatment is cognitive behavioural therapy/exposure therapy and/or medication.The goal/end result being able to face fears, overcome irrational thoughts, eliminate avoidance, and reduce rituals...

What happens with AS children?

I see some very different viewpoints here re: obsessive behaviours/stimming, etc than I would have thought, based on what I know of managing ocd.

Can someone please shed some light?



daisydiana
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06 Feb 2007, 9:20 am

Hi, I know with my sons anxiety, we just talk to him and prepare him for the things to come and try to reassure him as best we can. We also do social stories which are usually done by his behavior specialist, i don't know if you heard of them it is basically a picture story accounting all the events leading up to whatever we are dealing with at that particular time. For example he started a new school this year, so we had a social story about his new school there were pictures of the school, the staff and some of his new classmates. It is done to familiarize him before he gets there so he knows of what is to come(no Surprises).Hope this helps.



aspiesmom1
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06 Feb 2007, 9:56 am

For us we found most of the anxiety came from a few sources:

Fear of a new situation

Unexpected change in routine

Sensory issues - sensory overload

We personally have never worked with any "experts" with our son, nor used any medications, and so far it's been working. We've simply helped him work through these issues slowly, or avoid them in cases like sensory overload.


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ster
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07 Feb 2007, 6:45 am

i unfortunately understand your dilemma........our daughter, who we'r still fairly certain is an aspie, was dx-ed ADD~hyperactive/impulsive type. i don't have the $ for a re-eval, & insurance, as you know, doesn't cover it...........*sigh*.....at the moment, we just try to take one day at a time. we treat her respectfully, talk to her in concrete language, and help her try to understand social situations as much as possible. no answers here~just sympathy