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Hi. I'm new here. I think my 6yo son might have ASD. I guess I'm pretty sure

that he does, but I am just really afraid and somewhat upset and overwhelmed to

get yet another diagnosis. He is due for a triennial eval, so we will probably

be getting diagnosed soon. I don't want the diagnosis as I am already assuming

he does and using strategies to compensate, but I think it will help explain to

other people his behavior, help medical professionals understand, and help us in

dealing with the school.

We are really in touch with our local DS group and a lot of kids his age and I

have noticed for quite some time that he is very different than our other

friends with DS. He also has cleft lip and palate and has been diagnosed as

apraxic. We've known about sensory integration issues since he was little. I am

also wondering about auditory processing, but he can't formally be tested for

that until he has a certain amount of language. I guess I'm busy figuring out

his individual diagnoses, and actually all of them together as a whole would put

him on the AS. He has a bone conduction hearing aid for conductive loss after 5

sets of tubes and now permanent holes. We are in the process of getting a

communication device and learning cued speech. We homeschool and get private

mainstream-type services. We also use the neurodevelopmental approach.

Anyway, the post below really got to me. I just joined yesterday and it was

the first time I've heard of anyone else doing this. My son would sit and

" twirl " any kind of cloth item all day long if he had his way. I sat down

yesterday and actually listed all the questionable behaviors he did and I was

actually surprised at how many I listed.

Here they are: Twirls and licks fabric, noses up to the TV, lies on the ground

and runs trucks back and forth staring at the wheels, distracted and

nonproductive in new environment, hot/cold issues which are resolving,

hyposensitive to pain, hypersensitive to tickling, trigeminal stim, cutting

hair, palms of hands. Throwing hearing aid off in a fit if there is background

noise, no fear, inconsistency following directions, inconsistent eye contact,

little spontaneous signing or word approximation but does imitate well, follows

visual directions much better than verbal. Toilet training has been difficult as

he is great with the routine, but doesn't initiate. Self " talk " with throaty

babbling, self " talk " with his unintelligible speech (babbling). He loves to

read books which is great, but I've been watching him closely and sometimes he

just prefers to flip through the pages which could be stim. When we're in a

noisy and/or visually distracting environment (a lot of people, a new

environment, bowling, etc.) he doesn't interact with any one person, but

prefers to run around the room in circles the entire time. When in these

environments he used to shut right down, but now he runs around in circles

around everyone, I think stimming off the sensory overload. He used to love his

hands, but doesn't do that any more. He does chew on his fingers, but it may be

when he has fluid in his ears. He was very oral for a long time, but is getting

better. He has his favorite foods, which are anything carb. He hates mashed

potato or hard boiled eggs for the texture I think.

I've been questioning it for a while, but he is so friendly and sweet. He

loves giving hugs, will say and sign " hi " " bye " and " I love you " all the time,

even to new people. The thing is, though, that when we are playing with his

friends he does prefer to be alone and doesn't really interact with them. He

loves babies though. He does great 1:1, but when not 1:1 or tired will stim, and

when tired will be mad if you take his stim item away.

Anyway, I don't know. I've had people tell me that they don't think he has it

and people tell me to watch it. I have read a lot about autism and do try to

incorporate educational strategies into our program. Actually, many strategies

that help with autism also help for DS anyway, so that is good.

I'm kind of overwhelmed, like I said. I feel like I really need some support

right now with this, but there isn't much locally. I feel like we don't even fit

in too much with our DS group anymore because his behavior is so different. It's

difficult to go to homeschool events (he has a twin brother with no medical or

developmental issues) or any events with him because he doesn't follow

directions well, runs wild if we let him, wanders, gets into dangerous

situations, and throws a sit-down or tantrum if he doesn't want to do something

or doesn't understand. He's getting bigger and it's getting more and more

difficult to deal with him outside the home (as I'm sitting here icing my lower

back from taking them sledding yesterday).

This past summer we moved my office to give him his own room, took out most

toys in it (he dumps and stims in the pile of toys) and reversed the door locks.

I hated to do it and some of our friends and family think we're horrible for

doing it, but I've gotten up in the night to find him wandering around the house

or sleeping on the floor somewhere or in dangerous situations. I worry if there

were a fire or emergency during the night we wouldn't know where he was. During

the day he is fine in the house because it's Nick-proofed and the little toys

with a million pieces are in his brothers room (most of his toys are in the

family room so he can play appropriately and supervised. (Will I ever be able to

have any nice knick knacks ever again?). Our house is very minimalistically

decorated at this time. We did get a fence for the yard for safety reasons

through medicaid, which was a lifesaver, because it was getting to the point

that it was getting so difficult to take him outside even

in the backyard any more.

Thanks for accepting me here and letting me vent. I would welcome any advice,

comments, etc.

" absull@... " wrote:

I have 5 children who have Down syndrome. The oldest Andy, is 25. He had an AV

canal repair at 14 mo and after that he had many signs of ASD. Flapping,lining

up toys(not " playing " with them in a typical manner) Being very pset at changes

in schedule, or being asked to do something different. Not really mixing with

kids. The good news is that he is still very cuddly with us..especially if he

initiates it. He will usually hug back even if we start. Our daughter Kate is

just 14 and JUST getting an ASD diagnosis. I have suspected for a long time her

being on this spectrum. She is in 7th grade and I think in some ways it

actually helps her! She reads music and plays the clarinet in band. She is very

visual. She dances and it helps her to focus and remember the steps. If left

unattended she would sit in her room and " twirl " a piece of cloth all day....and

not come down to eat or drink. Sometimes she is angry when we interupt her

twirling.She is also very affectionate on her own

terms. The other 3 kids are " typical " kids who have Down syndrome...if there is

such a thing.Brigid