Aspergers Support Thread

[jayhawkmom]

Question to the Aspie parents....

Does your child/ren know s/he has Asperger's???

If so... how did you tell them??

My son knows that his best friend has Asperger's - (as our doctor says... "birds of a feather...") but I have not said anything to my son about his own diagnosis. I figured it was best to wait until after his appointment on Friday. But, HOW do I tell him that he's been diagnosed with this? DO I even tell him at all??

He's almost 9, I certainly don't want to say anything that he'll perceive to be a negative thing. I want him to be reassured that his different abilities are wonderful and that we are now going to have the tools to help him with the things he has difficulties with. Does he NEED to know he's on the autistic spectrum??

[Fiddle-Faddle]

Question to the Aspie parents....

Does your child/ren know s/he has Asperger's???

If so... how did you tell them??

. Does he NEED to know he's on the autistic spectrum??

I told my now-11-year-old Aspie son several years ago. He had met 3 different severely autistic kids during the year before I told him, and I made apoint of talking afterwards about how they seemed different from other boys that he knew, and in what what ways. I named their behavior as autism, and discussed it in as much detail as I could.

Then, when he started noticing that the supposedly-normal boys in his class were a bit different than him, I reminded him of the autistic boys he knew, and told him that he had a tiny bit of autism, and that it was called "Asperger's Syndrome." I also talked about the Aspie-type traits that his father and I share with him, and especially what my experiences as a child were like

I also told him what approaches, learning styles, and "translation" styles worked for me. I then told him that he could work with a TSS (I described a TSS as someone who would be a teacher who would come to the house) on these issues, or he could work with me, and that it would be his choice, and I would totally understand if he wanted to work with a TSS, as I had already spent most of his life telling him what to do, how to do it, and why!

He chose to work with a TSS. Smart boy!

I know what you mean about needing to know. On the one hand, you don't want him to have a negative label for himself. I know one 17-year-old Aspie whose mother keeps telling him that he can't do certain things because he is autistic, and it makes my blood boil, because I think she is crippling him befroe he even tries!

On the other hand, you want him to understand why things might be more difficult for him than for most of his peers.

I chose to let him know the diagnosis, but I emphasized that he has already conquered most of the problems caused by autism, and that he will conquer the rest. I am careful to remind him that he might always process info in a different way than most others, but that there is nothing wrong with him because of that, and that he simply needs to know how to translate back and forth between his way and the "other" way.

And the birds of a feather thing--hee hee! He can be in a room with 25 other kids that he has never met before --and within 5 minutes he is happily chatting with the only other Aspie kid in the room. It has now happened at least 5 times (that I know of!). The funniest thing is, when you get 2 Aspie kids together, they don't seem autistic.. They interact with each other with appropriate conversation, eye contact, body language--the whole 9 yards. But put them with a jock, and you can just see the "autistic wall" go up.

Makes me wonder which one is really the" normal" one!

[Fiddle-Faddle]

I just wanted to say to those of you who had such HORRIBLE mothers how sad I feel for what you went through, but also how very much I admire you for breaking the cycle and becoming such wonderful mothers and caring sensitive adults, yourselves.

May the Lord bless and protect all of you!

[jayhawkmom]

The funniest thing is, when you get 2 Aspie kids together, they don't seem autistic.. They interact with each other with appropriate conversation, eye contact, body language--the whole 9 yards.

This is exactly one of the reasons I decided to revisit the issues my son was having...(well, that and the 4 hour meltdown the other night). When my son was at his friends house... his mother made a comment about how when 2 Aspie's play together, there is totally nothing "different" about it. They play together like all the other kids play together. I stood back and said, "He has Asperger's?" Said, "Yes... doesn't Josh?"

Then I proceeded to tell her about our trials and tribulations with evaluations, testing, doctors...and the whole 9 yards. Not only is she the mom of a child with Asperger's, she's also a teacher. So was so right on when she told me that my son and hers are like twins separated by a year - LOL!

His friend came over to our house on Sunday. Watching them together was hysterical.

Josh's psychologist mentioned the same thing to me... two Aspies could be in a room full of a thousand people... and they'd find each other, and instantly hit it off. The other 998 people in the room would not matter one bit to them.

[Phyllis28]

Question to the Aspie parents....

Does your child/ren know s/he has Asperger's???

If so... how did you tell them??

Yes, my son knows he has Asperger's. It was clear from the time he was 3 that he was different from other children. His psychogist helped us tell him.

[2kids4me]

Question to the Aspie parents....

Does your child/ren know s/he has Asperger's???

If so... how did you tell them??

All I know is that it's nice to have a name- Aspergers - because the name gave my daughter

something to identify with....

Some background first - we all knew something was wrong, our daughter, her brother and my

husband and I had been going back and forth to doctors and watching her younger brother

surpass her in many developmental areas. The name gave us a starting point for conversations - to explain to family that there was a reason our daughter behaved the way she did, and it also gave us strategies to help all of us cope. We decided to talk openly about the disorder by reading the book Asperger's Huh? by Rosina G. Schnurr as a family. I did this because it felt right for us, and necessary as well.

The night we read the book, our daughter literally grabbed the book after we were part way

through and said " I know! Is this about me?" and as we read more, my son asked lots of

questions and I could relate to the pages about doctors appointments etc.; our daughter lit up with excitement. the only way I can describe it is: she looked relieved. The book described her frustrations, it gave her family a glimpse into her world and it helped us all understand that she needed help in certain areas, and that we were not alone. She asked many questions for many days and she was happy each time we talked about it ... I can't remember her exact words but it was something like : "I like it that you understand me."

In typical fashion she also would blurt out to other kids and adults " I have Asperger's " in a proud, loud voice. Then she would just stand there, not sure what else to add, she just wanted the world to know I guess. We talked to her about appropriate discussion of Asperger's since many children and adults didn't know how to respond to that tidbit of information.

It was a positive experience for us; our daughter was almost 8 yrs at the time and she was able to deal with the information in a positive way as well. The discussion with our family then allowed us to share this information openly with family and friends, thus allowing questions to be answered as completely as possible.

As a baby, she would fall asleep during any event - church, family gatherings, any place with

noise and people. So many people (including me) were so impressed with how good she was

during all the chaos. I realized later on that she was tuning it out because of sensory overload - falling asleep was her brain's way of coping. I do that a lot - refer to coping mechanisms by body parts - like her brain's way of coping, sensory overload. I guess I try not to personalize the dysfunction too much - it seems to help both family members as well as our daughter in seeing that this is a problem related to input, and overload, and inadequate processing not a behavior problem or a personality flaw.

At whatever time in your child's life that they diagnose an autistic spectrum disorder - it may be a time of grieving and relief (an odd combination). The realization that life will never be

"normal" again and that your child will have many obstacles to overcome. Some parents find

comfort in knowledge and become sponges, soaking up all the information they can find about

Aspergers, others know something is wrong, but they are not willing to label the child as

autistic..... it can be difficult to accept the diagnosis; other parents fall somewhere in between.

The exciting part is when you realize there IS a lot you can do to help your child. Your

sensitivity to body language will be heightened, and you may feel a certain peace in knowing why certain behaviors surface in your child. There is comfort when you access support through therapists, teachers and other families with similar difficulties.

Sandy

[jayhawkmom]

As a baby, she would fall asleep during any event - church, family gatherings, any place with

noise and people. So many people (including me) were so impressed with how good she was

during all the chaos.

OMG!! Joshua was JUST like that. People commented ALL the time on how lucky we were because we had such a wonderful "easy baby." If we'd go to the mall, a party, a picnic - you name it... he'd be snoozin' away. He *never* slept at home.... he was always wide awake, taking everything in.

Josh spent a couple of years in occupational therapy for sensory processing differences, and he's very well aware of his capacity for overload.

I'm going to have to find that book!!

[bluejeangirl]

On the subject of sensory overload does anyone else have problems when on your computer screen they'll have anything flashing or blinking. It drives me crazy. I find it so distracting. When they flash images during the commercials on t.v. I have to sometimes get up and leave the room. Its one of those things that adds to the already stressful environments we live in.

Gail

[jayhawkmom]

On the subject of sensory overload does anyone else have problems when on your computer screen they'll have anything flashing or blinking.

Uh huh!!!

[chad from fla]

Aspergers and bedtime at our house...

My daughter has trouble getting to sleep at night; the average time is 1 1/2 - 2 hours of transition. I used to try all sorts of things, music, talking, reading to her... but in our situation, I was prolonging sleep even further ... because she still needed the same amount of quiet time after I finished reading or whatever. I had a clue one night when I asked her if she knew why she had trouble getting to sleep.... she replied

[Ursa Major]

Chad, let's just say that the 'movies in the head' thing is just ONE out of many symptoms. I have never heard of anybody with AS who didn't at least have some features of ADD, and who doesn't also have some tics. That still doesn't mean they have ADD or Tourette syndrome.

When I was diagnosed with Tourettes, the psychiatrist who was evaluating me said, that even though I have quite a few symptoms of ADD and OCD, there weren't enough for a separate diagnosis for either.

So, I have confirmed AS, TS, and a touch of both OCD and ADD.

When I went through the AS list, I had about 98% of possible features of AS. Apparently, you have enough to have suspected it, but not enough to be diagnosed with AS.

And Jayhawkmom, I cannot tolerate anything flashing either. Flashing lights will cause a migraine and overload, and I have to look away if the images are moving too fast during a movie, or something flashes on the computer or tv-screen.

[Fiddle-Faddle]

I hate the flashing things, too!!

ADD and Asperger's are both on the autism spectrum, and I'm not convinced that there is a totally clear line between them; seems more like a gray area to me. Both ADD people and Aspies can have some symptoms of the other.

In the end, I'm not even convinced that separate labels are necessary. Either way, you're somewhere on the autism spectrum, and either way, your thought processes and learning style tends to be specifically different from the "neurotypicals." ADD? Aspies? Does it matter as long as the people you are with (and your teachers when you are young) know how to successfully and effectively communicate with you?

The best teacher my son ever had didn't care two hoots about specific diagnoses. She said it was her job to figure out how each child in her classroom learned best, no matter what their diagnosis (or lack thereof), and that what worked for one wouldn't necessarily work for anyone else, anyway, even if they were both "normal."

[2kids4me]

But how do you know your daughter is Aspergers and not just ADD

Because she fits the diagnostic criteria for Aspergers, not ADD. She was diagnosed after years of testing, observation and her pediatrician is one whom other pediatricians refer kids to.

Kathryn does not have attention deficit, in fact she can focus and concentrate on a task so much that she has trouble going to the next class if her work is not complete. We have developed strategies for this....any difficulty focusing is related to sensory input (loud noises, distracted by activity)..if she is in a quiet place, she will work for hours, completley focused... someone with ADD has difficulty focusing no matter what the environment, certainly distractions would make it worse.

The "movies in the head" are common with anyone within the autistic spectrum or pervasive developmental disorder (PDD) ...often many kids with traits that could be classified under either ADD, ADHD, autism are placed ina more general category of PDD-NOS (pervasive developmental disorder - not otherwise specified)

Kathryn has many symptoms, the sleep thing is one of many issues, lack of eye contact, social troubles ( as in figuring out conversation, making friends, appropriate social interaction), sensory issues, auditory processing and visual processing problems, transition, she is very literal... and that's just off the top of my head as I sit here at the computer.

Sandy

[chrissy]

some kids with ADD can hyperfocus on certain things.

[2kids4me]

Ok, so I wasnt aware of that. All I was pointing out is that in my daughters case, she was not diagnosed ADD, as I was responding to a query about how I know my daughter has Aspergers.

I have also had the opportunity to speak with Tony Attwood, and Temple Grandin on separate occasions and I am comfortable that we are on track with the diagnosis.

I, like other parents on the board, have individualized strategies for my child, addressing needs regardless of the name they put to it. That's they key - find what works.

Sandy

[ArtGirl]

This has been a most interesting thread. I would never have known about Aspergers and the Autistic *spectrum* before joining this forum. This explains some people I know (maybe even myself a little )

I have a question for you all. Where does the problem with racing thoughts fit into all this. I understand that it is an aspect of ADD. Is it also a symptom of Aspergers?

[jayhawkmom]

I don't think "racing thoughts" is typically associated with Asperger's. I think it's an issue more widely associated with bipolar disorder, specifically mania.

Chad - Aspie's tend to have much higher than normal IQ's - yet seem almost "dumb" in social situations. And, I absolutely mean NO disrespect when I say that. Sensory issues are often a big deal, and they seem to lose something in translation when talking to others. My son is "obsessed" with sharks. He can tell you anything you'd ever want to know. And, quite frankly - if you don't want to sit and talk with him about sharks for hours on end, he simply can't understand why. They are fascinating to him, so surely... they are fascinating to everyone. Right?? We've often joked that he'll grow up to be a professional football playing marine biologist who has a part time job as a statistician. He is horribly ritualistic and scheduled, and he has to be able to anticipate, with great accuracy, what is going to happen, when it's going to happen, and why it's going to happen. We use timers a lot. If I say "times up" - it's subjective. However, if a timer goes off to signify "times up" - it's a whole different thing.

My boy has no trouble getting to sleep at night. He rarely napped as an infant, and slept much less than normal infants. However, as soon as we'd get into any kind of situation where there was any noise, crowds, bright lights... he'd immediately fall asleep, he'd just shut down. He had sleep issues up until around the beginning of 2nd grade, and then all of a sudden - he's able to go in, lie down, and be snoozin' soundly within minutes. I have no idea how or why, but I'm glad.

I could go on and on, and on. But, I will stop now. Does he have attention issues? In some respects. (So do I, so does his father) But, he also has wonderful gifts that place him on the spectrum - and so we'll do everything we can to help improve his quality of life. Which, actually is pretty good as it is! =)

edited to add.... hey artgirl, I just noticed you are in KC! Me too! =) How about this CRAZY weather?????

[chrissy]

sandy----individual strategies are really what it comes down to. what do you mean when you say "movies in the head"? is this replaying the days events over and over?

the more i have heard about asperger's i have begun to wonder if my son and i could be a little bit this way. i didn't fit the category when i took the test, but maybe we could fall under the "shadow asperger's" that someone mentioned, or maybe we just have some sensory issues caused by something else------and they mimic some of the asperger's symptoms. i also have fibromyalgia and i think that some of the problems it is causing me are similar to some of the aspie symptoms. lights and sounds can bother me, i need to rock---i can't sit still, i am very sensitive to how things feel.

i really wish i could figure "me" out sometimes.

[2kids4me]

what do you mean when you say "movies in the head"? is this replaying the days events over and over?

It is a way that some people on the autistic spectrum "log memories". Temple Grandin talks about it in her book Thinking in Pictures and other reports form my life with autism.

Its like you go through the day experiencing things and at the end of the day - it's played back to be recorded on "hard drive" in the memory. it was my daughter who used that phrase movies in my head to describe why she couldnt get to sleep.

Ursula descibed it as well in one of her posts on this thread.

My son is "obsessed" with sharks. He can tell you anything you'd ever want to know. And, quite frankly - if you don't want to sit and talk with him about sharks for hours on end, he simply can't understand why.

Go with it! When I talked with Temple she was adamant that I find what my daughter's obsession is (easy! stuffed animals of all kinds) and nourish it and help her find a career that is related. Kathryn wants to be a zookeeper or a biologist - quite in keeping with obsession with all kinds of animals.

My guess is your son will likely gravitate towards that goal - keep him interested in biology etc and show him all the fields of study related to sharks - esp marine biology

sandy

[jayhawkmom]

My guess is your son will likely gravitate towards that goal - keep him interested in biology etc and show him all the fields of study related to sharks - esp marine biology

Everyone around him knows of his obsession. In fact, just yesterday he came home with a "mini-report" from a website that his teacher had found and printed for him. =) He has stuffed sharks in his bedroom (toys... not taxidermy, LOL!) and he draws them constantly. He asked me to help him find out what the specific name of a "shark scientist" is when he was in 2nd grade. We learned that it's an Elasmobranchologist. He's already told us that he's disappointed because in order to go into marine biology he'd have to move out of Kansas, since KU doesn't have a "spectacular" oceanography department. He said, "I'm going to have to move to where there is water, mom." LOL!!! (Yes... he's in 3rd grade - he's 8, and he's already trying to pick a college!)

While no one else will listen to his lengthy explanations of the Ampullae of Lorenzini - we will, for as long as he wants to talk about it.

(And, because of this discussion and the fact that I had to look to see how to SPELL ampullea - I found elasmoworld - which is a site my son had not yet visited, and I'm sure he'll LOVE it! Thank you!!)

[2kids4me]

While no one else will listen to his lengthy explanations of the Ampullae of Lorenzini - we will, for as long as he wants to talk about it.

ahhh, maybe right now, only family listens but once he reaches his goal, people will pay to hear him discuss these things and he will be sought after as an expert....

You should read Temple Grandins book, Thinking in Pictures, she devotes much time discussing school. She had a fascination/obsession with doors and she was great with animals. Many teachers had labeled this distraction as "odd" and tried to get her to stop....til one teacher recognized there was more to it..Temple went from almost quitting school to excelling and going on to revolutionize animal handling systems throughout North America ... and then worldwide. She is considered to be the top expert in animal handling sytems, and has been called upon by veterinarians to assist evaluating a farm where something seems to be stressing animals.

In one case, a large pig operation (wild boars) was experiencing problems with mother pigs (sows) killing the young , abortions , fighting etc. It was found that a nearby drilling sight (oil) was flaring off gas and the sound was probably pretty loud to the pigs (they hear sounds we cannot)... it was stress response. Temple talked to the company and a solution was reached, pigs were happy once again.

When Temple talks, people listen, even the big guys at oil and gas companies.

So too, for your son...one day, he will have lots of people listening. What they dont understand now is that this child isnt just fascinated by sharks but he is absorbing facts and information that most adults cannot put all together and remember. Good for you that you are encouraging him and supporting him. I get sad when I see a child with enthusiasm for somthing and parents or relatives, make fun of it or say things like "he'll grow out of it" or ask the child "dont you know anything else"?

Aspie's tend to have much higher than normal IQ's - yet seem almost "dumb" in social situations. And, I absolutely mean NO disrespect when I say that

You just described Albert Einstein, we all know his reputation with math/physics. Yet many have pictures of him at social events and write of their experience, he was often dishevelled, interupted conversations, and was "aloof" to many, scientists who met with him noted that he would never look anyone in the eye - which some found disconcerting. Albert Einstein had an autistic spectrum disorder...or at least it looks that way.

EDIT, add on.....

I found this stuff and thoguht it interesting -

According to the researchers, Einstein showed signs of Asperger's from a young age.

As a child, he was a loner and often repeated sentences obsessively until he was seven years old. He was also a notoriously confusing lecturer.

Open Original Shared Link

His early academic career was notable only for the fact he was asked to leave his school for "disruptive" behaviour.

But he had always excelled at mathematics - a subject which would later make him the most renowned scientist in the world.

Open Original Shared Link

Sandy

[Creative-Soul]

ahhh, maybe right now, only family listens but once he reaches his goal, people will pay to hear him discuss these things and he will be sought after as an expert....

Good for you that you are encouraging him and supporting him. I get sad when I see a child with enthusiasm for somthing and parents or relatives, make fun of it or say things like "he'll grow out of it" or ask the child "dont you know anything else"?

Sandy

...Or, " You need to go into a "real" career," as if the interest was fake or something! I used to get that one a lot.

I love to seeing when a parent is actually supporting a child instead of trying to tear them down - good for you! So many people are so busy trying to make their children fit into their own / a template that they don't see just how talented, resourceful and brilliant they really are!

[2kids4me]

This is excellent!

Open Original Shared Link click on the the box, see video of animal school.

Kathryn is the bee!

It's wonderful powerpoint comparing animals ot kids...but in an unusual way. The animals decide to open a school, they have four subjects - flying, swimming, running and climbing.

It starts out with the duck who did great at swimming but couldn't climb, so the teachers made him give up swimming to focus on climbing - it goes on like that about various animals being made to do things they struggle with..then the second half compares the duck to a child who is good at math but terrible in english. So they pull the child from math to study more english and as result he loses his edge in math and only does passably well in english. The bee... well ya gotta see it!

Sandy

[Creative-Soul]

Okay...I have to type this all over again!!!!! (just lost a whole page of typing *sigh*)

Sandy,

Thanks you for that...absolutely beautiful! Should be required viewing for all...

I can most relate to the eagle; though not everyone saw me as a troublemaker, I certainly had my own way of processing / experiencing school! I did not realise completely until now just how special some of my teachers /professors were...

For example, when I was little my math book would have one page covered with working, while the other had parts of cartons and comics that I was drawing at the same time. In my teens, everyone would be working on, say, a French project, and I would have finished it and be working instead on some new fashion design ideas. The other kids would want me to get into trouble. The teachers would take a look, and tell me that as long as I was discrete and kept my grades as high as they always were ( I always loved my classes; it was the other kids I couldn't stomach), that I should knock myself out! My French teacher especially, sophisticated Parisien that she was, pushed me to keep designing...

[Ursa Major]

I love that animal school movie! Every teacher and parent should watch that.

I struggled with math (still do). I could (and still do) often reach the right conclusion, but in my own way. Unfortunately, having the right answer was never good enough, my way of coping and solving math problems my way was unacceptable. If I didn't have all the 'right' steps down on paper, I'd still get a zero, as just having the right answer was 'wrong'. But how could it be wrong? Why do teachers think there should only be one acceptable way of solving problems?

My son had the same problem. He solved math problems differently, skipping some steps and adding other, 'unacceptable' ones. I remember seeing a math test when he was in high school, that was just covered in red. He got a failing mark. Yet ALL of the answers were right! He just solved the problems the 'wrong' way. It made me absolutely furious. How dare those teachers do that to kids!

I bet that Albert Einstein solved his math problems the 'wrong' way as well.