physical symptoms/body shapes

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I read a post on a cochlear implant message board that got my brain going. My 8 year old dd has cochlear implants (was born deaf) and was also diagnosed with AS about a year and a half ago. I'm just wondering if other AS kids have these same issues or if this is related to her hearing loss.

-speech issues. Her language is great...she picked it up so quickly once we started signing (when we learned she was deaf and then once she got her first implant. Her speech therapists were impressed at how quickly she learned to speak). She has been talking since 2 1/2 and is 8 now. Her articulation is a mess. She talks your ear off, but some adults still can't understand her and most assuredly, children can't understand her (which only causes more social issues).

-messy eating-she is the messiest eater I've ever seen. She has to wear a bib if she eats anything that is remotely juicy...she can't keep liquid in her mouth very well. She can't slurp hot chocolate off of a spoon...it ends up all over her shirt. It frustrates me because I want her to have those things, but it drives me nuts the amount of shirts and pants that have been ruined by hot chocolate. If she eats spaghetti (she won't eat the sauce, but will eat noodles with parmesan), the noodles are all over the floor. She hardly uses a utensil. I think we remind her nearly 10 times every mealtime to use her fork. She will constantly go back to using her hands to pick up her vegetables or pasta or whatever else she is eating.

-low muscle tone-Again, at mealtimes, we have to remind her to sit up constantly. She will put her feet or her knees up against the table for stability. It drives my husband crazy. He realizes now that it's just a part of her, but for a long time, it was difficult for him to not see it as her being disobedient.

-difficulty doing anything that involves gripping something-She has trouble opening water bottles, even when the top isn't screwed on really tight. She can't grip the pencil well enough when she's using the pencil sharpener and has a really difficult time doing anything that involves resistance as a whole. She still can't peddle a bicycle on training wheels well. She does okay if it's flat, but the slightest incline would stop her (and of course that leads to major frustration and then we're done even trying). She isn't able to pour her own drinks yet. The milk jug is too heavy. She's not great at planning ahead, so often if she does get her own drink, she overfills it and it ends up everywhere, even from the faucet.

-small stature-she turned 8 in September and she is 47" tall and weighs 42lbs. She is so super skinny, it's amazing. I don't have a clue how she is so small, but she is. Her 5 year old sister has 10lbs on her and her 3 year old sister is quickly approaching her. She is also extremely pale. Her hair is very disheveled and difficult to manage. You can brush it and 2 minutes later it looks like you haven't touched it in 3 days. Of course, that could have something to do with her constantly chewing on the ends if she can get them to her mouth. Last year at school, we got multiple calls from the nurse saying she looked so sick and I needed to come pick her up right away. She always looks sick. In reality, though, she is my healthiest in terms of germs and getting colds, etc.

Are these symptoms of Asperger's? Do your kids deal with these things? What can I do to make her life easier? She used to go to physical therapy, but now insurance won't pay for it. I guess there are so many practical things that I worry about her doing. It makes me feel terrible for her that her 5 year old sister can do so many physical things that she can't. So, is this related to the AS or is it something else we should be looking into? She's just so quirky and I struggle with what is related to what. Should I be looking for something else...a different causation so that I can possible help her with these things? Or is it pretty typical of AS? It just feels like no matter how hard we work and practice things like articulation, life skills that involve any type of strength, it doesn't get better or easier for her.

Have you had her tested for dyspraxia? It sounds like it and it is a common comorbid with Asperger's.

I have a younger sibling and they are still ahead of me in most regards. It's kind of disheartening but AS is a developmental disorder.

Utensil Cramp?

Have you asked the doctors about adding weight gain products (health nut stores carry this kind of stuff) to her diet?

My son is also small in stature. Probably similar to your dd at age 8. He is very healthy and active.

I would urge patience as she develops skills. DS learned to tie his shoes at 9. That seems late, but now that he knows how it doesn't matter when he learned. This is just a small example. It is the same with everything.

When they are adults, it will not matter at which age they were potty trained, learned to ride a bike, said their first words. I think our children benefit when we can allow them to develop in their own way while supporting them as they learn and grow.

i'm still new to all of this, but i think i can safely say that her hair texture, and whether or not it's "difficult to manage" has nothing to do with whether she has asperger's or not.

I would agree be patient and she'll probably improve in lots of areas. Just to give you a comparison , my daughter's 12, she took until about 10 to ride a bike, (now can do it but not a keen bike rider) 11 to tie her shoes; brush her long hair properly, and is still mastering shampooing it. She also has low muscle tone, and slumps terribly, no matter how many times I say "put your shoulders back, stand up straight" and she's tall for her age. With eating, she always forgets to close her mouth while eating so I constantly remind her, "close your lips when you chew" .( it's really important to get this one because a noisy eater is not okay. )
The speech thing, she has also had speech issues , excellent vocabulary but runs the word into one another and does not enunciate, so many people havent understood her over the years. She's been to a speech therapist who said theres nothing wrong with the prnounciation of each word, she just has to project them clearly, well in the old days you'd get an elocutionist, now its all drama and she wont go to drama classes.
With your daughter and her hot chocolate, why not get her one of those insulated cups for keeping drinks warm that have a lid on and a hole for drinking? You see adults with them often, it wont look like a baby cup.

Recently I've taught my daughter a bit of cooking, nothing complicated, but she is now able to make two suppers. Now obviously she's older than your daughter, but it's been great for her self esteem I feel. And I probably could have done it younger, (I'm there with her obviously, making sure she doesnt set her self alight with the gas stove. ) Perhaps you could find something for her to master that the other girls dont get to do yet cause they're too young.
Anyway, try not to feel too disheartened, it seems like she began life with a challenge in the deafness, and did pretty amazingly with mastering the speech so fast! I'm sure things will improve with time.

my son has all of the things you mentionned, plus some heart issues.

I realize that her hair probably has nothing to do with it. I was just wondering whether there was some nutritional deficiency there or if it's common. I seem to recall that many Aspies have teh same pale skin (of course not all). My other 3 children have straight hair that lays down straight. Her hair is straight, but gets extremely frizzy. She also has the cochlear implants, so my guess is that's where it comes from. No need to get snippy about it, though. It was just a question.

Have you considered William's Syndrome? A lot of the symptoms seem to match her, including the poor motor skills and excellent vocabulary. Does she have a cardiovascular problem, difficulty with spacial relations and mathematics, as well as sight problems, anxiety, hyperactivity, hypersociability, an empathic nature, alimentary tract problems such as constipation, a high amount of calcium in the brain, as well as an affinity for music? Try testing her for a heart abnormalty or enlargments or enhancements in the auditory synapses and other areas that control musical ability and vocabulary and syntaxical talent, as well as an atrophy or something in the visual, logical, or abstract parts of the brain. Oh, and one more thing: is she unusually friendly or naive, and does she love to meet new people, because that is the very hallmark for WS.

I have no intention of curing Williams Syndrome, either, because if there weren't any kind, sweet people like them who, despite low IQ's (failure to process abstraction), are actually intelligent and articulate people who are generally non-prejudiced, our society will get even more racist, sexist, and bigoted (studies show that they are unable to stereotype).

I'm thinking Sonic was holding out for a laugh at his own expense...
Standard format for many jokes...
I thought it worked, anyhow:
We can make humorous comments once in a while .

Sorry, I guess the eye rolling got me on the defensive.

KissofMarmaladesky,
Thanks for the info. I will look into it. I have no idea about her musical ability. She loves to listen to music and of course engages in echolalia when it comes to music. She is very friendly, but she has no boundaries. She's also not exactly a very affable person. She's not agreeable and gets into lots of arguments with her sisters. But everything else fits. She's an avid reader, but doesn't seem to get math quite as quickly. Not sure that's behind in math, per se, but she doesn't excel in it like she does reading. Thanks again for bringing it to my attention. I'll have to ask her dr.

Someone wisely told me once that when you've seen one child on the autism spectrum, you've seen one child on the autism spectrum.

I learned to speak quickly and easily. I had no hearing issues, so my articulation was never a problem. My son spoke a little later and his articulation is terrible, but he has oral motor issues as the root cause.

I was meticulous about eating and I still am. I am very clumsy however so making a mess can happen and it irritates me to no end. My son is like me, but is more sloppy because he still isn't all there with his body awareness.

The slurping issue you mention is most likely not voluntary. She may have similar issues to my son. He has very low tone around his mouth and poor lip closure. I would imagine her discomfort with utensils is also tied to low tone. My stepdaughter is 12 and will still eat with her hands if you let her and can't open a can of soda or a jar of any kind unless it's been significantly loosened for her.

I was very small in stature, but it was understandable. There are several women in my family who were under 5' tall (I am 4'11"). My son is quite tall for his age and is stocky - not fat. His bones are incredibly thick so I think he's going to just be a big person - favoring my husband's family. My son and I are also very healthy. We have terrible trouble with allergies, but seem to have some resistance to certain viruses (the flu in particular. I have been sick with it once in my life - last year).

I would suggest occupational therapy if you can get it for her. It sounds like she would benefit from it. We're finally getting a little OT and I've been after it for 18 months. It really helps a lot. Articulation issues can be really difficult to correct especially if they're ingrained from many years of mispronunciation. Don't give up - it takes time, sometimes a lot of it. And kids with AS are VERY quirky - that's totally normal. My husband and I just try really hard to find the humor in what our son does (like screaming "AFLAC! AFLAC!!" when he gets upset about something - his newest "fun" behavior) and I try to remember that not everyone has the same "needs system" that I do and go from there.

I'm a "she".

Appreciation for natural frizzy, kinky, coily, and curly hair tends to be one of my topmost hyperfocuses.

Frizzy, "difficult to manage" hair is not the indication of some sort of deficiency. It's a just a beautiful variation on human traits. Had you said it was breaking off or falling out or something, that would have been different.

I get very itchy and hypervigilent to political correctnesss when it comes to hair textures.

Going item by item:



I vote that this is related to the hearing issues. I have no advice on how to deal with it.



100% like my AS son. The first thing to note is that she isn't going to pick up manners by observing, like most kids do; she will need to be taught. The second thing to note is that even then it may just be much harder for her, and you will have to pick your battles. One step at a time, one skill at a time. I've decided with my son that home is his free space, and his lack of manners is mostly ignored. But if he wants to eat in a restaurant (and he LOVES restaurants), he has to use manners. And, you know, he does. I don't give verbal instructions at all; it is all visual or physical, and always gentle. If you don't eat out regularly, then maybe designate one or two nights a week as "manners" nights, where she promises to do her very best, while letting her be the other times.



Most of these sound similar to my AS son's loose joints co-morbid. Several things happen in combination if the child has that. The first is the obvious difficulty with certain physical tasks. The second is that the child will need to move and fidget and seek sensory input because a high percentage of the generated nerve signals get lost on the way to the brain, and the child needs to gather more just to have a sense of where they are in the air. This is an extremely common co-morbid with AS, and some of the things you described above may be AS, and some may be hypomobility.

I will confess that 5 years of OT made no noticeable difference. I would never say don't try, but I think you have to understand that if loose joints / hypomobility is the issue, the room for improvement is limited. Remember being pregnant and noticing your joints loosen up towards the end, how it made you drop things? It is very similar. My son is learning adaptive skills instead (the most important being keyboarding instead of handwriting, but your child is still a little too young to have the hand development for that), and one adult on these forums uses finger braces. She will get stronger in other ways over time, as well, which will help with some of the issues; to some extent, you'll have to wait and see.

The most crucial problem right now is most likely to be with her writing at school, and I recommend having that accommodated until she is developmentally ready to go full out with the keyboarding, which is generally around 6th grade. She should keep writing to the extent she is willing and able, but you should be given permission to scribe for her when you deem it necessary for her to produce the best content she is capable of (when writing hurts, like it does for my son, 3 pages of knowledge on a subject will be shortened to 2 sentences, and that sells him short).


The last, about the height, is not part of AS, but may be co-morbid. That is not an issue we have.

A lot of these issues sound very familiar. Have you tried gum or a chewy tool? I used to chew on my hair and so wish someone had given me another option instead of just yelling at me not to all the time. We had good results getting my son to use a chewy tool instead of his shirt; when he was old enough not to swallow it he graduated to gum, which he still uses a lot.

Low muscle tone is a common issue and you may be able to help it with exercises at home, since your PT has stopped.