Aspergers Support Thread

[jayhawkmom]

Little kids of all shapes, sizes, and abilities are highly attracted to my husband. Kids like me, alright... but not the same way they like him. We are the family that will someday have kiddos knocking at our door asking J, B, & I if their dad can come out to play. LOL!

[Cam's Mom]

Hi!

I have been reading through this thread over the past few days and have not summoned up the energy to participate but have found the conversation so fascinating and enlightenting. My son was diagnosed/labeled as a "spectrum kid" with sensory integration disfunction when he was in preschool. We then got him right into OT and PT and it made a huge differnece for him. He is very bright, particularly with math. He was home sick recently and asked me to go in and ask the teacher for the highest level math packet (he's in first grade) so the teacher gave it to me and Stratton took it and turned to the last page, completed all the problems and said - doesn't he have anything better than that? He tries so hard to follow all the rules and is a major perfectionist but recently he got his report card (which seems really unneccessary in first grade anyway) and he had all A's but two little A-'s under the section of controls himself verbally and physically. The teacher made a little note that he makes involuntary movements and sounds when concentrating. Poor kid - he was devestated because he had no idea. He sometimes walks into things, bumps his head (alot), falls over, trips, etc., particularly if he's concentrating. Like so many others, after holding it together all day he flies into rages when he gets home. We have yet to find a way to deal with the melt downs.

Anyway, a couple of things I wanted to add to the discussion. I am fascinated by the idea of seeing colors around people. Stratton is what we call our family nerve ending or the canary in the coal mine. He feels EVERYTHING! particularly if it has to do with his twin sister. Before Camryn was diagnosed with Celiac disease (like a year before) he had terrible stomach aches and lots of diarrhea. We had him repeatedly tested for celiac and all sorts of things and found nothing. We had him genetically tested and he does not have the genes for it either. Then she gets diagnosed (with almost no gi symptoms) and we cahnge her diet and voila - he's cured! Of course we've had him tested again and he's still neg. which I find so hard to believe because he previously had every symptom, small stature, skinny as a twig, gi pain, diarrhea... but now he has no symptoms (except still small) and the latest test say still neg and no genes for it. And yes, he still eats gluten. Anyway, I want to ask him about the color thing.

In the beginning of the thread a bunch of people mentioned sleep problems. This was a huge one for Stratton and he too had trouble turning of his "TV in his head" he said it was like his clicker was broken and he couldn't turn it off or change the chanel. We came across something called Hemi-sync which is sort of unbelievable (literally) and if I hadn't seen it work with my own eyes I would still not believe it! I am attaching a link here because I really can't explain it well. Open Original Shared Link For a while my son was addicted to his hemi-sync but can now actually get to sleep without it. Now when he has melt-downs he sometimes goes to his room and sits in his bean bag chair (good for deep pressure) and listens to it. He says "it helps me get organized".

Well, sorry my comments are kind of random, just wanted to chime in!

Best,

barb

[jayhawkmom]

Hi Barb,

I'm glad you posted. Somehow... it makes me feel much better to just "let it all out" to friendly strangers. =)

Our school district does not do ABC grades until the 2nd half of 3rd grade. I really like that. However, now that my guy is in the 2nd half of third grade, this next report card will BE an A,B,C card. That will be interesting for us - as he's always been a straight S+ kid. However, now that there are actual number grades on tests, it'll be interesting to see where he falls. Of course, if he has anything less than all A+'s (which his teacher has informed him as absolutely impossible) he's not going to be very happy with this next one.

Josh, while being tactile defensive, also has some issues with being hypo-sensitive. Like, if you touch him on the back and he's not expecting it, it makes him horribly agitated. But, he can walk around with food all over his face after lunch and have no clue, and not really care too much. Now *that* would irritate me, greatly!!!

Woops.... baby calls, bbl!

[Cam's Mom]

Kris -

That is so funny, Stratton wears his underwear backwards and his shoes on the wrong feet everday (although you'd think he's got a 50/50 chance of getting it right?) but if I come up behind him and touch him or kiss him gently on the cheek he goes bizerk.

Hard to understand --- I keep thinking if he'd just turn his darn underwear around he'd have enough room in the sensory bank for a little kiss!

Gotta love 'em though - they keep us smiling and guessing!

barb

[Fiddle-Faddle]

. He informed me that he sees colors around people, and always has. They aren't auras, per se, rather identifiers of "good, bad, or indifferent."

I found these: Open Original Shared Link and

Open Original Shared Link and

Open Original Shared Link

There was a lot more, but that's a good start.

When I was in high school, one of my music teachers was writing a dissertation on sound and color. She did a survey to see how people assigned color to certain musical keys. She said EVERYBODY she surveyed thought that E Major sounded like yellow or orange (I thought yellow, myself), and g minor sounded like dark blue.

You are not crazy, and neither is your son!

[Guest AutumnE]

Hi I hope this is okay to post a question here, I have read over your posts a bit and never really knew what entailed with asperger's and it was like a light bulb being lit up with the symptoms and how I have felt for years.

Well I came across this test Open Original Shared Link and took it. I scored 151 out of 200 and it said I was very likely to be an aspie. I had dh take it too and his score was 60 and it said very neurotypical. Is this an accurate test? I assume it is and I had a pretty high score. I never pictured that I had something *wrong* just always felt different and I am better socially online than in real life as Im very shy. Also are there any websites to help understand what asperger's symptoms are and how to help my situation maybe? I would love to feel comfortable at parties again as I usually avoid them like the plague now unless its very immediate family. Although Im not the one that is bothered by avoiding them. Dh gets frustrated and so does my family but I dont know how to change to make them okay with it. My dh also shares that I hurt other people's feelings by doing this but I dont mean too honestly. I feel like such an odd duck out of water sometimes and celiac disease with my allergies and intolerances I feel makes me stand out more.

Thanks

Autumn

[jayhawkmom]

Thank you Fiddle Faddle. I'm going to go check out those links right now. To tell you the truth, I really am still skeptical, which probably doesn't help my son any. I feel terrible admitting it, but I just don't "get it" - probably the same way he doesn't "get" most everything else. I want to believe that he's not just making this. I want to believe he's not just saying things to appease or placate me temporarily. How in the world do I "know" he really sees these things??

I know I should not doubt him... and I have a strong faith that doesn't require sight for verification. Yet, why am I having such a hard time believing my son ... because I can't see what he sees????

I do believe him... and yet, I don't.

Autumn,

I just clicked on that link. The first question asked is "Do you have a small mouth?" What in the world does that have to do with Asperger's?? Taken from the test:

Some of the questions in the quiz are formulated so that an autistic answer is NO, others so that an autistic answer is YES. There are some pure research questions that might be totally irrelevant for autism-spectrum.

To me... this is just ridiculous. An autistic answer?? Honestly... I can't even begin to give this type of "quiz" any credence or validity at all. There ARE quiz type things out there that are based on TRUE criteria for Autism/Aspie diagnosis. The very first question is "Do you have a small mouth." The answers available are "I don't know, NO, Sometimes or Almost Always." The answers don't even fit the questions. Plus, having a small mouth has nothing to do with Autism or Asperger's. Another one of the questions asks "Do you think differently than others?" Well, how does one KNOW whether or not they think differently? This "test" is completely subjective - and really has no true measure of Asperger's, Autism, or anything else.

There are many "quiz style" diagnostic articles online. But, this doesn't appear to be one of them. Granted, this one that I'm posting a link to is "child specific" but you can see how different the questions are from those that are posted in the "Aspie Quiz" link you posted.

Open Original Shared Link

And please don't think that I'm picking on you for posting this. I know it's hard to "read" people through a posting on a forum. I'm just trying to demonstrate that there is a LOT of misinformation on the internet. The questions they are asking are incredibly subjective and a true "aspie" may not realize, at all. But for diagnostic purposes, I don't see this particular "quiz" with much relevance at all to true Asperger's Syndrome.

You are more than welcome in our little group here, absolutely!! I'm learning myself, daily, how to "deal" with the issues my son is having. Perhaps by sticking with us, you'll realize that you either really do - or really don't - fit the criteria. But, either way, you'll find support and friendship.

[Fiddle-Faddle]

jayhawkmom, I am guessing that the small mouth question is there as a way of collecting data. For all we know, a small mouth might have something genetically in common with Asperger's; perhaps it's on the same gene as the one responsible for low mercury threshold. The number of autistic kids that I see who need expanders is high; in fact, my son seems to be the only one among his group that doesn't need one! So maybe there is something there, after all.

Or they might be going after the opposite definition of a "big mouth." Either way, I do see possible relevance.

There are some awfully interesting physical coincidences with celiac, aren't there? I remember seeing one thread here asking how many people here had unusually long eyelashes, and the response was staggering. So it could be the same with autism.

[jayhawkmom]

There were actually a lot of "data collecting" questions, but the one regarding the small mouth was on the actual "diagnostic" quiz. Did you happen to look at it? Some of the questions just seemed seriously ridiculous. I may be WAY off the mark here, but this one just looked absolutely nothing even remotely like the ones I've seen that have been posted by the leaders in the field. Again... I surely could be wrong. I'm a "newbie" so I'm learning as I go.

[Fiddle-Faddle]

Did you happen to look at it?

Sorry, I didn't. I did click on the link, but when it asked me to accept that my answers would be saved, along with my computer info, I X-ed out. I don't want them sending me info, cookies, or any other surveys, let alone keeping my computer info. I don't know enough about them.

Anyway, since I didn't see it, that's why I posted two possibilities that made some sense (well, at least to me!), one for data collecting, one for diagnostic. I DO know autistic kids who would get confused about big mouth, small mouth stuff!

And while we're talking of testing, my son was given a test in kindergarten to determine "giftedness" that included things like looking at a picture of a cigarette lighter and knowing what the first letter was!!! (Obviously, he had never SEEN a cigarette lighter, and had no clue what it was.) And there were many questions like that, including a rifle (poor kid labeled it as a gun) and some other stuff that I have forgotten.

His biggest problem on tests is reading comprehension. He feels that it is somehow cheating to reread the selection after seeing what the following questions are. He also reads the selection as fast as he can, totally missing the point, and circles the first answer that somehow rings a bell for him, whether or not it is actually answering the question.

(Sigh.) We're working on it....

[Guest AutumnE]

Thanks It was an odd test! I didnt know how to answer some questions. I do think I might have it, I resemble so much of what you all talk about. I dont have much to add but I'll read if thats ok to understand it a bit more.

That other test was really hard to answer also, I didnt know how to answer since it is so geared toward kids.

Autumn

[jayhawkmom]

That other test was really hard to answer also, I didnt know how to answer since it is so geared toward kids.

I agree. It's really hard to answer, as a parent, also! It's almost like you KNOW that if you answer a certain way, it stacks the odds against your child. But, that's why it's important that we only use things like that as screening devices and not for diagnostic measures.

FWIW - I have a lot of sensory issues myself. And, I most definitely prefer to be alone. I don't do well in group settings. I hate parties, unless it's one of my kids' bday parties. Oddly enough, I love to PLAN them, I just don't want to attend them. =)

With my son, some of the sensory issues are debilitating. The sound of thunder and sight of lightening sends him into a tailspin. He will literally fold himself into the fetal position, wrap himself up in blankets, and shake like a leaf until it passes. He has an incredibly limited diet due to the oral defensiveness issues, and that's made it incredibly difficult for us with regards to the gluten-free diet. We are doing what we can.

Also.... some great news.....

I've mentioned that my son is somewhat of a math whiz. Well... I was just informed that he scored a 100% on the district wide math testing - and he also was the only child in the school to achieve a 100% on a Math Pentathlon held recently. Pretty exciting!!! From what I understand, the Pentathlon is also district wide, and scores are calculated through the year. The kids with the highest scores are awarded trophies, medals, certificates...etc. My big guy is looking like a very good candidate, at this point!!!! =) =) =)

[Creative-Soul]

I could sure use some support!

I know I'm way late, but I finally got the chance to watch "Mozart and the Whale". I probably shouldn't have watched it alone, but I couldn't coordinate with my (best) friend's schedule and I did not expect to react the way in which I did. Halfway through I came upstairs to help someone else with groceries, and I was so agitated/keyed-up that I was shaking; I tried to sqash it enough so that she wouldn't notice. After I finished watching the movie I just shut myself in my bathroom and bawled my eyes out. I'm still a little shaky now...

It really hit home, especially seeing Donald, because he is the one character that is most like me - though there are pieces of some others that relate to me as well. My stims are not as obvious as his, but to finally 'see' the confusion and pain and frustration that I've felt all my life in someone else was too much for me to take, I guess. I've never actually met anyone with Autism/Asperger's, and AS was something I've never heard of until a couple months ago. There are actually other people out there who feel the same way

I'm doing a lot of reading, and had a good conversation with the Director of GRASP who encouraged me to join one of their support groups. I am scared witless but I know it's something that would help me greatly. I've always struggled with self-acceptance but this throws a new wrinkle in the mix! I am glad to have found out what I'm dealing with (I'm not crazy!!!); I can now find / work on approaches, etc, that will actually work for me, but its still a lot to process and figure out, especially the pros and cons of diagnosis. Why the heck does it cost so much to see a specialist????? My therapist isn't familiar with it, and I don't have the funds or insurance to see someone. And the Hospital studies that give you a free diagnosis require that they get specific answers from a parent or close relative who has known you from early childhood - will my mother even want to be a part of that??? We are NOT close and even when she was begged to get me help when I was younger, she refused... so I'm even more stressed...

I have no problems with being undxed right now, but its part of me to look at every detail... How do you who don't have a dx explain things to those who you care about (knowing)? How do you deal with telling a (new) significant other? I've told two friends about it...and what about possible work issues?

Thanks for taking the time to read this... its nice to have another avenue to hash things out without always dumping them on my best friend...

[2kids4me]

Creative soul - I am so glad you watched the movie...the emotional turmoil you felt is so understandable. Kathryn was glued to the TV and kept bursting out with comments about recognizing herself. I had tears in my eyes, simply because it brought greater depth to my understanding of her world....the moment where I had to pause it and take a break was the amusement park scene where Isabelle grabbed her ears.....and Kathryn said: "That's what I feel like in class sometimes" ... that is the extent of stress she faces and I wasnt truly aware til I saw it in a movie!!

Write as much and as often as you want, we family members of Aspies can learn from you!

Sandy

[Creative-Soul]

Creative soul - I am so glad you watched the movie...the emotional turmoil you felt is so understandable. Kathryn was glued to the TV and kept bursting out with comments about recognizing herself. I had tears in my eyes, simply because it brought greater depth to my understanding of her world....the moment where I had to pause it and take a break was the amusement park scene where Isabelle grabbed her ears.....and Kathryn said: "That's what I feel like in class sometimes" ... that is the extent of stress she faces and I wasnt truly aware til I saw it in a movie!!

Write as much and as often as you want, we family members of Aspies can learn from you!

Sandy

Thank you, Sandy! I was just thrown for a loop, I guess, and I am not good at handling emotional stuff... I was so surprised at how well the movie/actors got into my head and skin, especially the two main characters. Donald's confusion, indecision and aversion/shock to change are mine, and I soooo related to the whole phone thing (especially when he is trying not to call) that I laughed and cried at the same time. Isabelle's artistic talents and aura are also mine, and I also can look at people sometimes...though I most often look at their mouths, or stare at the pupils in their eyes so I don't get frazzled!

I guess that I may fall in the higher functioning level - I can squash some of my stims and play off some of my reactions somewhat - but I don't feel 'higher functioning' when it takes every ounce of my strength to make it through the day, or when I'm super frustrated that the simplest things are the hardest for me to understand or accomplish, or I feel so overwhelmed that my nerves hurt and I feel sick to my stomach - and that's the way I've always felt, from 3-4 onward. I always knew I was different and that my wiring was strange...

The hard thing is that I am beginning to wonder if my mother knew/suspected something was up, but never told me (she is very secretive, period). She just confirmed to me - via someone else - that I spoke late, though she never said at what age...I suspect that its three. She would always treat me as if I was "two", very controlling and over- protective, but I always chalked it up to just being her way, and it always felt like she never knew how to relate to me/what to do with me...

[gfp]

Also.... some great news.....

I've mentioned that my son is somewhat of a math whiz. Well... I was just informed that he scored a 100% on the district wide math testing - and he also was the only child in the school to achieve a 100% on a Math Pentathlon held recently. Pretty exciting!!! From what I understand, the Pentathlon is also district wide, and scores are calculated through the year. The kids with the highest scores are awarded trophies, medals, certificates...etc. My big guy is looking like a very good candidate, at this point!!!! =) =) =)

OK sorry - Im being over direct but great news for who? You or him?

I was a math whiz at 5-6, my father is a scientist and used to socialise with engineers, scientists and mathematicians (he worked for the atomic research people) .. He thought it was cool to have over friends and me do tricks ... often racing me against a mathemetician to solve complex stuff ... I would almost always win and almost never made mistakes. I can still do it when I want I just hate doing it... if someone makes an error totting up a bill I keep my mouth shut unless I think its deliberate...

same playing darts or something, I rarely score, I try like hell not to...

When I started school I was expected to show working, I didn't and still refuse... that is for the examiner... so far as I'm concerned its either right or wrong and its not up to me to prove I'm correct, its up to them to prove me wrong...arrogant? Yep...

By the time I was 11-12 I got into a well thought school on entrance exams and was put into the top stream.

End of year one I walked out of the exam after 10 mins... got 27% (yeah I have a freakish memory) and that was it for the next few years...

On occaision after a few drinks Ive let it slip... one friend got me doing square roots of long numbers... I now bitterly regret doing it... now everytime we go for a bill etc. he just asks me ... I can do it and its trivial but it puts me in a place I don't want to be.

Sorry for being blunt...

Apparently

Your Aspie score: 175 of 200

Your neurotypical (non-autistic) score: 36 of 200

You are very likely an Aspie

so I'll call this as my excuse...

[2kids4me]

I was so surprised at how well the movie/actors got into my head and skin, especially the two main characters.

I think the movie affects so many with its portryal of the autistic spectrum because many of the lead characters have relatives with autism and wanted to stay away from sterotypical images of past movies (the extremes of autism like kanner autism or else the "rain man" type). The employer who hired Donald is portrayed by an actor who has a daughter with autism (I can't remember his name - arghh)....each actor knows more about autism than just what's in the script. The couple (the Newports) whose lives are loosely portrayed in the film had a huge role behind the scenes as well.

On occaision after a few drinks Ive let it slip... one friend got me doing square roots of long numbers... I now bitterly regret doing it... now everytime we go for a bill etc. he just asks me ... I can do it and its trivial but it puts me in a place I don't want to be.

Its unfortunate that friends put you in that position and make you uncomfortable. I can't imagine having to be so concious of hiding a particular ability, lest another person decide to have you become their personal calulator.

Sandy

[gfp]

Its unfortunate that friends put you in that position and make you uncomfortable. I can't imagine having to be so concious of hiding a particular ability, lest another person decide to have you become their personal calulator.

Sandy

I dunno, I just find it embarassing and I don't like it when people afterwards disagree over the bill.

I dunno in some ways its a "normal reaction", my gluten-free is bilingual but doesn't like doing translation.

but I think the main thing is I have to go a place I don't like or more accurately I think I have to pass a place I don't like.

When I do math like that its in a seperate dimension or something weird which sounds very stupid. Depending on the complexity etc. I loose some touch with reality while still being half aware of what's going on.

However to get to the math "place" I have to pass right by the "memories for today I threw away" place.... this is a huge place where I "store" all the stuff that assailed me during the day that I don't want to process. For instance I try and avoid film credits otherwise I end up "rereading" it before I can sleep along with lots of other stories that somehow need to play out ... its also the place I put all my worries and things which are upsetting me...

when Im doing the math I'm concious of being closer to my garbage heap than real life... I know my garbage heap is all in my head but its a defense mechanism. and the barriers between this and the math place feel very fragile and sometime translucent, like I catch glimses of the things I threw out and it disturbs me... this is very hard to explain... like you'all probably think Im crazy now... Yes I understand these places don't exist outside of an artificial construct in my head but this is just a way I survive from day to day... if its disrupted I will get withdrawn and introvert.

[Ursa Major]

I just did that Aspie Quiz, and got on the Aspie score 170, and the NT score 22. But of course I knew that already.

I still haven't been able to locate the movie to watch (and after trying for a while I forgot).

Steve, I am almost glad I am NOT a math whiz (I believe I have dyscalculia ). But I was made to perform my language skills in school. Mind you, when my teacher who I had for the first six grades made me read my stories out loud, or the kids wanted me to read to them (when the teacher asked who should read a story), it was the only attention I ever got, and so I had mixed emotions. I was deathly afraid of stumbling over the words (and so not read perfectly), but at the same time felt honoured to have been chosen.

I was very embarrassed though whenever a teacher wanted me to explain grammar to the class, because I was the only one who always got 100% on all those language tests. And I had to tell them that I had no idea what the rules were, that I just did what 'felt' right. And it always was right. I have no idea of English grammar rules, either. Language is just intuitive to me. Seeing spelling or grammar mistakes almost hurts, and it is very hard for me not to correct people when they make mistakes (my son is the same way, he does have some Aspie traits for sure).

Have you tried explaining to your friend why you hate it when he tries to get you to perform? If he is really your friend, he should understand and stop doing that.

[Creative-Soul]

...but I think the main thing is I have to go a place I don't like or more accurately I think I have to pass a place I don't like.

When I do math like that its in a seperate dimension or something weird which sounds very stupid. Depending on the complexity etc. I loose some touch with reality while still being half aware of what's going on.

However to get to the math "place" I have to pass right by the "memories for today I threw away" place.... this is a huge place where I "store" all the stuff that assailed me during the day that I don't want to process. For instance I try and avoid film credits otherwise I end up "rereading" it before I can sleep along with lots of other stories that somehow need to play out ... its also the place I put all my worries and things which are upsetting me...

when Im doing the math I'm concious of being closer to my garbage heap than real life... I know my garbage heap is all in my head but its a defense mechanism. and the barriers between this and the math place feel very fragile and sometime translucent, like I catch glimses of the things I threw out and it disturbs me... this is very hard to explain... like you'all probably think Im crazy now... Yes I understand these places don't exist outside of an artificial construct in my head but this is just a way I survive from day to day... if its disrupted I will get withdrawn and introvert.

gfp, actually, you explained that quite clearly - and beautifully, actually - at least for my very visual mind. I agree with Sandy in thinking that its so unfortunate when people, for whatever reason, seem to think that its okay to use us for their own amusement/purposes...

I just did that Aspie Quiz, and got on the Aspie score 170, and the NT score 22. But of course I knew that already.

I still haven't been able to locate the movie to watch (and after trying for a while I forgot).

Language is just intuitive to me. Seeing spelling or grammar mistakes almost hurts, and it is very hard for me not to correct people when they make mistakes (my son is the same way, he does have some Aspie traits for sure).

Ursa Major, I hope you do find it soon, it is definitely worth seeing. And I'm the same way with language and correcting people as you are. I can proofread and edit all day, I love it so much, and it irks me no end when I'm reading books and all the errors just jump off the page and hit me between the eyes; it spoils my enjoyment of what I'm reading...

[Fiddle-Faddle]

Hey, if any of you are awake right now, Larry King is doing a 1-hour special on autism on CNN right now (on "Larry King Live")...

[ginap73]

Wow, I didn't know there were other aspies here...

[Creative-Soul]

Edited: Changed my mind.