Please describe your Aspergers children...

[Misty]

And if you have a diagnosis, could you please describe the process?

 

I think that my 5yo may have Aspergers... She's my 3rd daughter. She is extremely loud and talkative and does not notice social cues AT ALL! She will get in your face to talk, will follow repairmen and the like out of the house talking to them while not noticing that they are not paying any attention to her (they're usually talking to me!) but she keeps on talking and talking in a monotone voice that no one can understand. My older daughter will be telling her to stop it the entire time, but she doesn't notice and will keep on talking to them. This is very embarrassing and it happens often. She will talk to us in a monotone voice, telling us her dreams, etc. but she doesn't notice when no one is listening. She doesn't notice when people are annoyed by her or even when other people outside of our family tell her she needs to stop doing something. She doesn't notice that she is bothering them. She has to be corrected CONSTANTLY when it comes to interrupting people when they're talking. Even when told not to do this, she still does it repeatedly in the same five-minute span.

 

She is EXTREMELY high needs and always has been. She has sensory issues and could not tolerate eating solid food until she was 2 years old. Her older sister had to have occupational therapy for the same thing. She definitely has ADHD and OCD, though they are both undiagnosed. Her 2 older sisters also have OCD and my 2nd daughter also has anxiety. My 1st daughter has Tourette's as well and they all have sensory processing issues and/or sensory seeking issues each to their own extent. The 5yo currently has to touch everything and rub her arms all over everything that she is near, including people (not strangers). She makes funny squirming movements with her body while she talks and I don't think she has ever sat still for 2 seconds in her entire life, unless sleeping, which she doesn't do a lot of. A lot of times she acts like she isn't processing the information we are giving her (i.e. "sit still so we can take a picture") and will carry on as if in her own little world making weird facial expressions and acting like she is trying to squirm right out of her own skin!

 

I understand that I need to have her evaluated for something, I'm just not sure WHAT!! Should I just describe her symptoms to our family doctor and let him decide which specialist to refer us to? I really would like to mention which disorder I think she has so that we get referred to the correct specialist (psychologist, neurologist, etc.). The way our military insurance works is that we HAVE to go through our family doctor and get a referral before we can see a specialist. And I doubt that our family doctor is going to be knowledgable enough about all these symptoms to clue in that it's Aspergers (or whatever it may be) so I really need some feedback as to what you think she may have, if anything. I have only met one kid with Aspergers before and it was only briefly. He seemed like a completley normal kid except that he talked slightly monotonous and stepped back and forth from foot to foot while he was talking. And I know a lot of people don't figure out that their child has Aspergers until they are teenagers, so I know it's a disorder that sometimes goes undiagnosed for quite some time.

 

She doesn't fit with everything I've read about Aspergers though. For instance, she appears to play okay with other children (though 99% of the time she plays with her sisters), makes eye contact most of the time, and isn't clumsy. I haven't read a whole lot about spectrum disorders though so I really don't know if all symptoms need to be present for a diagnosis.

 

Any advice? I need to make an appt. and take her in and get things started. I was going to wait until after we moved to our next duty station, but it looks like our house isn't selling anytime soon, so I guess I need to get on with it!

 

Advice or input??

 

Thanks so much for your time!

[dalynnrmc]

I have three children (boys) "on the spectrum" and we do not have any dx's, and are not likely to pursue them unless and until we find that necessary.

 

My oldest, 9yo, I'm quite sure is dealing with AS.

He didn't speak understandably until 4-5years old, at which time we discovered that he could read, on at least a 4th grade level. He was put into speech therapy in the ps K (after I'd been told in pK that he didn't need it, ugh) and diagnosed with a language processing disorder: Semantic Pragmatic Disorder. This includes issues with comprehension, paying more attention to details than to main ideas, issues with "wh" questions, and something about neuropathways being connected in reverse. I was also told that he "may" also have "a little bit of hyperlexia." Hyperlexia has to do with an astounding talent for letters and reading. At this time, I'm quite sure that this suspicion on the part of the ST was quite correct.

 

We deal with meltdowns on a regular basis, even to this day, though they are not nearly as pronounced as in the past. In the spring of his pK year, the pK teachers asked us to have him evaluated for ADD because he wouldn't pay attention to them. They'd tell the class to do something, and then have to tell him separately. They said to also test his hearing, because maybe he just wasn't hearing the instructions. The pediatrician (actually, she was a nurse practitioner) said definately not ADD but maybe ODD (oppositional defiance disorder) sent us to the child psychologist who told us two things: he's very, very smart and can read on a 3rd or 4th grade level at least, and she thought "the rest" "might" be due to low self esteem, "don't ya think?" And, since last year and having done my own research and gotten into autism spectrum loops, I have heard that getting a diagnosis is quite... a journey. I would recommend suggesting anxiety, and would like her tested for autism spectrum, and ask to be sent to a specialist in autism. If doc gives you trouble in sending you, describe the symptoms, and persist.

 

My son had terrible meltdowns. I was convinced, for a long time, that the reason he couldn't speak clearly was because during the time a child should be learning to speak, all he did was SCREAM. He did this from the time he was about 2 weeks old; of course, then, I was told it was colic. Then it was terrible twos. Then it was preschooler defiance, then possibly ODD, and after that he was just behaviorally challenged (read: bad). He would cry and get SO upset over such small things. Give him directions with too many points and he'd break down. Tell him to do something that HE was convinced was too difficult, and he'd break down (still does). One of the things he breaks down over even to this day is that he "doesn't like to be wrong," which is an issue with school work. He gets very upset if he doesn't get what he thinks is an A+ on his work. We've had to deal with this.

 

Over time, the things I've done naturally turned out to be the things that would be "prescribed" for similar behaviors in a child on the spectrum. I knew from a young age that I would just have to find what worked with him, that the "typical" methods simply wouldn't work with him. Turns out that I was right on the money, and even that I've done a pretty good job of determining what the "right thing" is. And reading up on what all the spectrum includes has done a world of good.

 

I pulled him from the ps because of two reasons. One, he wasn't being challenged academically. (As a result, he was staring at the ceiling, or at whomever was on the computer, or doing something annoying with a noise or movement.) Two, the ps system does not TEACH socialization. They throw you to the sharks and expect you to swim. They do not teach children how to properly interact with one another, and that was very obviously - to me, anyway - what he needed: a more rigorous academic schedule, and one-on-one guidance as to the proper way to act, interact, and handle life's situations.

 

No, to look at my son, he doesn't fit the "mold" of Asperger's. Like your dd, he plays just fine with others (as long as they don't get the lines from the movies wrong - HA!), he makes eye contact, and he seems very "normal" on most levels. But hit a trigger and away he goes.... It is SO much better now, and I am thankful - mostly to God - that I've found the right ways to deal with his behaviors. I also pray every day that the Lord will continue to show me how to deal with him, and how to train him in the way he should go - whatever that way might be for him.

 

 

My ds always preferred to play alone, as does my ds5 who is a whiz at patterns and building (legos, wooden blocks... pillows, anything). Ds9 liked to watch the same video over and over and over and over... all day long to no tiring end. Ds5 also likes to glue himself to the television, but he prefers to NOT watch the same thing twice during any given month. ;) Ds4 has learned to enjoy whatever is on the tv, because he seldom sleeps, and needs something to do! (Melatonin to the rescue! He used to go 3 days without sleeping and then crash for 18 hours. Scary stuff, and SO HARD on Mom!)

 

 

Anyway. It's late and I'm kind of rambling, but having watched 3 kids on the spectrum (and even without dx's I KNOW they are), and having seen all 3 have completely different symptoms, I will say this in closing:

Not all Asperger's children have the same symptoms. There is a loose outline of some characteristics that are "typical," but autism is a spectrum and there are so many different colors in it, that sometimes it's hard to find the exact shade of any one pixel... but don't miss the rainbow. :)

[hsmamainva]

I have two children on the spectrum. My oldest son (14 yrs old) has high functioning autism / Aspergers and my youngest daughter (6 yrs old) has a more moderate form of autism (although she's pretty high functioning)

 

My 14 year old, when he was younger, was very sound sensitive. He didn't like loud noises at all. Thunderstorms would send him into the bathroom, where he'd turn on the water, and the fan, and wear a walkman with headphones to drown it out (he still doesn't like thunderstorms, but he no longer hides in the bathroom!).

 

He's obsessed with Star Wars, videogames, and Legos. In a way, it can drive me up a wall .. but, on the other hand, when he gets together with other boys, it gives him something to talk about that they enjoy as well.... almost a connection, if you will, so that makes it tolerable!

 

He has an amazing memory!! He loves to memorize dates, places, presidents, etc. He needs to go on Jeopardy or something. I can give him a year and he can tell me the president who was in office at the time in the blink of an eye.

 

When he was younger, he could recite Spongebob episodes, from beginning to end, without any mistakes, from memory.

 

He can be very talkative -- in the extreme, but he's gotten better about it! He does have the traditional Asperger's clumsiness and often drops things or walks into objects (he's also tall for his age and that makes it more challenging, too!)

 

He's a very good worker, but he can be easily overwhelmed and is something of a perfectionist. He loves art and he can draw very well.

 

Now...my youngest daughter (age 6). She has language delays which complicate hers (as opposed to Asperger's). She's very bright, very visual, and also has an amazing memory. When she was very little, if you told her you were going to the bank, and you didn't turn down the right street, she'd scream.

 

She doesn't like crowds...and she can be overwhelmed in new situations. She's very routine-oriented and can handle most things, if she's warned about them ahead of time.

 

She loves water and art supplies (playdoh, paints, crayons, etc.). She has many typical autistic traits that my older son never had (such as flapping her hands when she's excited). She has numerous parroted phrases that she uses all the time (since true conversational language is extremely hard for her).

 

She enjoys learning...and loves to 'do school'. Math is her favorite subject.

 

Hope this helps a little!

[Carrie12345]

My son's pediatrician dx'ed him with Asperger's after a 20 minute meeting. That did NOT sit well with me!

 

I didn't need a referral, so I just called up a child development center and told them I wanted a full eval for neurological disorders. I felt that asking the ped about Asperger's influenced his so-called evaluation.

 

Through the center, J was evaluated by a child psychologist, a physical therapist, an occupational therapist, a speech therapist, an educational psychologist, and some other child development specialist (I lose track, lol). They did their independent evals, and then got together to discuss the results before meeting with me to go over them.

 

Because of the referral process, I would request a developmental pediatrician. They're most likely to have established relationships with all of the other specialists.

 

As far as comparing kids... there are so many factors and nuances of factors involved. It's really hard to find 2 aspies who are very much alike.

 

And some things are really hard to notice without experience. Like, J has always been happy to play with others. Still, he doesn't relate well to other kids. He wants to play games they don't "get", or he wants to make the rules, or he doesn't understand when they're teasing ("nice" teasing or "not-nice" teasing, and he certainly can't tell the difference between the two).

It's like the difference between "Homeschooled kids are unsocialized" and "Homeschool kids don't sit in a classroom with 20 other children for 6.5 hours a day." You have to understand socialization to know what adds up and what doesn't.

[JFSinIL]

The kid I can describe had her own language (idioglossia) with her younger sister, spoke in a monotone (still does most of the time), toe-walked, was socially clueless and hence made no friends or participated in any social stuff until GRADUATE school - has sensory issues (sound and visual sensitive!)and has to rub her eyes if she sees someone touch their head, can NOT tolerate being at the table when folks are eating, can not stand the sound of gum chewing but has learned to chew her own gum to "block" the noise, will have to both rub her eyes, plug her ears and leave the room if anyone taps their fingernails or scratches, has no sense of smell (probably a good thing!), still has a hard time with social clues but has learned (since grad. school) to WATCH how people interact and then copy it. The only reason this person was not diagnosed with Aspergers is the fact that doctors weren't using the term back then ;) (60's - 70's) Oh, and she, from age 11 on, read everything ever written about silent films and early talkies and almost got a PhD in it all.

 

She tends to type big old run-on sentences, too!

 

:) OK, 'it is me - and now I have a son with autism, his twin is very smart yet not social at all, and the two dd's of mine have had language issues (and one is socially immature). If I hadn't been lucky in my roommate in graduate school and learned to study and replicate social stuff from dorm mates I doubt I'd have married and had kids!

[Misty]

Oh, wow, DaLynn... Thank you so much for so much info! A lot of what you described sounds so much like my daughter. She has been screaming since she was 2 weeks old too! She is very prone to tantrums and has daily meltdowns. She is my only daughter who is like this. I have often thought of ODD too with her. She will not follow instructions in a group setting and barely while alone... For example... Just today we went on a field trip with other homeschoolers to a bee keeper's house. Anytime we tell all the children to do something, we have to tell her separately and we have to tell her multiple times. We told them to sit on a bench so we could take their picture.. We had to tell her separately... Once they were seated, she bent over to pick at stuff on the ground... Everyone else was smiling to have the picture taken.. All the moms were saying "Sara, sit up so we can take the picture," and she completely ignored everyone, just sat there bent over picking at the ground. Finally after telling her several times (it was completely quiet so there was no background noise or anything that might distract her from hearing us) she finally stopped picking at the ground and sat up. I was sweating it the whole time, knowing I was going to be embarrassed by her behavior once again!

 

She does tend to freak out over things that most children do not freak out about.... Like when one of the moms initiated a game of musical chairs.. She did not understand that it was a game at all. So when another child sat in *her* chair, she completley freaked out and was screaming and saying over and over again that it was her chair and she began to walk over so she could physically take it back even after I told her that it was a game and after the game was finished she could have the chair back. She still tried to take it back.. She just couldn't allow someone else to sit in her chair (which had only been hers for 10 minutes!).

 

Anyway, I could go on and on about all the issues and incidents.. Don't even get me started on her OCD!!

 

Thanks so much for your helpful response!

[Misty]

Thank you Kelly & Carrie for taking the time to respond... It is so helpful to me in learning about these spectrum disorders. Carrie, you make a great point about the doctor giving the diagnosis too quickly when he otherwise might not have if the disorder weren't suggested to him. I can see how that would influence him instead of allowing him to make his own observations. I will keep that in mind when I consider what I'm going to say to him. And thanks for suggesting a developmental pediatrician.. I hadn't even thought of that, but I think it would be good for us to see one.

 

Thanks again for your time!

[Misty]

:) OK, 'it is me - and now I have a son with autism, his twin is very smart yet not social at all, and the two dd's of mine have had language issues (and one is socially immature).

 

LOL, I realized it was you right before you fessed up! Loved your post! What an interesting childhood you had... I see some of those same characteristics in my own children though not all quite on your intellectual level.. I'm sure they are all on the spectrum to an extent, but only one of them would be diagnosable. My kids also have high IQ's (my oldest was tested at age 6 and at that time was reading at junior high level.. She is now at adult level with reading/verbal expression and is currently writing a novel!!) and it seems that most kids I hear of who are on the spectrum are highly intelligent. So is "toe-walking" a sign of autism? I have heard that before. My brother has done this his entire life.. He suffers from anxiety and social phobia. Also, my 2yo does this a lot and he has shown many signs of autism (he is getting evaluated next week). I wonder if this is yet another sign (his other signs were a rocking obsession, an obsession with lining up toys, he was late with some social milestones such as waving bye-bye, etc., and he had a motor tic with is arm).

 

Anyway, thanks so much for your helpful input!:)

[dalynnrmc]

MANY of the things in Kelly's post about her ds are also true about MY ds. Forgive the c&p:

 

My 14 year old, when he was younger, was very sound sensitive. He didn't like loud noises at all. Thunderstorms would send him into the bathroom, where he'd turn on the water, and the fan, and wear a walkman with headphones to drown it out (he still doesn't like thunderstorms, but he no longer hides in the bathroom!).

 

The first time my mother mentioned autism (and I got SO MAD at her for it), was when my ds was not quite 2. We were going to a baseball game for my brother (who is only 2 years older than my son), and the parking lot is RIGHT BY a train track. Train came by and ds covered his ears and trembled all over; Mom said if he'd not had neck control or if he was running a fever, she'd have thought he was having a seizure. He absolutely hated flushing the toilets in a public restroom. We thought he was scared of them for a long time, until he got big enough to say "Too loud!" and cover his ears.

 

He's obsessed with Star Wars, videogames, and Legos. In a way, it can drive me up a wall .. but, on the other hand, when he gets together with other boys, it gives him something to talk about that they enjoy as well.... almost a connection, if you will, so that makes it tolerable!

 

My oldest isn't into the Legos, though my middle ds5 is. Definately Star Wars and video games... but he has several meltdowns for about a month after trying a new video game, because it's hard. :lol:

 

He has an amazing memory!! He loves to memorize dates, places, presidents, etc. He needs to go on Jeopardy or something. I can give him a year and he can tell me the president who was in office at the time in the blink of an eye.

 

I give my son an 8.5x11 page full of scripture, a poem, a song, or something to memorize, and he can recite it back to me in about 20 minutes. And it doesn't leave his brain, either, that's the thing. You should've heard him when Digimon was his "thing," and I still don't know how he knew which characters were introduced in certain episode numbers that he'd never seen. (How did he know what episode number they were in the first place??? I'm totally clueless. He was 7.)

 

When he was younger, he could recite Spongebob episodes, from beginning to end, without any mistakes, from memory.

My children, all 3, know both Ghostbusters movies from beginning to end. They pretend to be the characters and act them out... verbatim. (My oldest will correct the youngers if they fumble the wording even slightly.) My oldest also knows the new Star Wars movies, though he's not nearly as impressed with the original 70s series. Still loves it, but hasn't bothered to memorize it.

 

He can be very talkative -- in the extreme, but he's gotten better about it! He does have the traditional Asperger's clumsiness and often drops things or walks into objects (he's also tall for his age and that makes it more challenging, too!)

 

My oldest isn't that talkative, but he does tend to enter into conversations with something totally off-topic, and often it takes some probing to figure out exactly what it is he IS talking about. Now, ds5, since learning to speak clearly about a year ago, has not shut up since....

 

He's a very good worker, but he can be easily overwhelmed and is something of a perfectionist. He loves art and he can draw very well.

Ds9 is generally a good worker as well, as long as he can see the fruits of his efforts quickly - otherwise he, too, becomes overwhelmed. He's DEFINATELY a perfectionist. "But Mooooom!!! I hate to be wrong!" He has an interest in art, and is currently developing in that area. I was glad to find a "You Can Draw" 8 books in 1 thing at Ross recently, and he's enjoying using that.

 

 

Anyway. So, some of the more typical AS symptoms are a commonality, but again - there are seldom two "Aspies" that have all of the same symptoms. This thread is interesting and helpful to me, as well, so thanks for starting it! :)

[JFSinIL]

So is "toe-walking" a sign of autism? I have heard that before. My brother has done this his entire life.. He suffers from anxiety and social phobia. Also, my 2yo does this a lot and he has shown many signs of autism (he is getting evaluated next week

 

Toe-walking does not mean a kid is on the spectrum, yet many kids on the spectrum are toe-walkers (does that make sense?), just as a language delay does not mean autism, yet many kids with autism have language delays.

 

I was a head-banger, too, as my mom recalls - probably why my IQ is not as high as my non-head banging kid sister (over 160. How annoying to have a mom always pointing out that my kid sister should have gone to college instead of me!!!)

 

Hope the evaluators can come up with a correct diagnosis AND a therapy plan to help your little son maximize his potential!!! Good luck!!!