Re: what does autism look like in people who have DS?

[Guest guest]

Go to medical series on the left, then click on Autism and PDD

http://www.riverbendds.org/index.htm

Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

You can pretty much go by the criteria for Autism itself allowing for a bit more

demonstration of affection and sometimes more imitative play. This wasn't true

for us but the diagnosis is handed out a bit more freely these days.

More saved info:

http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

" Down Syndrome and Autism Internet Information Center

A child with Down syndrome is born in 1 out of every 800 births. An

estimated 7-10% of those children will be diagnosed as also having an

autistic spectrum disorder. That means somewhere between 1 in every 10

and 1 in every 14 children with Down syndrome will also have an

autistic spectrum disorder. This is much higher than the incidence

rate for children without Down syndrome. According to the information

that is available, children with Down syndrome are often not diagnosed

or evaluated for autism spectrum disorders until much later in life.

The average age of diagnosis in children being between 9 and 14 years

old. I have heard from families whose adult children with Down

syndrome are only now being diagnosed as also having autism. "

(http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

Sherry, mom to 21 DS-Autism

PS welcome to the list!!!!

[Guest guest]

Thanks so much for the links. I'll definitely check them out.

That is interesting what you said about kids with DS and autism sometimes having

more imaginative play and affection. Those are the two things on the autism

list that don't fit Aimee. Her imaginative play is very repetitive (spending 15

minutes feeding an empty spoon to her baby doll with very little change in how

she's doing it) but she does do some pretend play. She also is very

affectionate with me, fairly affectionate with my husband and a little bit

affectionate with our sons. She is not at all interested in people outside the

family, though, and even with us if she is " spaced out " or upset then it is hard

to break through and get her attention.

Just trying to unravel it all. Thanks again.

~

browneyedblessings.blogspot.com

>

>

> Go to medical series on the left, then click on Autism and PDD

> http://www.riverbendds.org/index.htm

> Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

>

> You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

>

>

> More saved info:

>

> http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

>

> " Down Syndrome and Autism Internet Information Center

>

> A child with Down syndrome is born in 1 out of every 800 births. An

> estimated 7-10% of those children will be diagnosed as also having an

> autistic spectrum disorder. That means somewhere between 1 in every 10

> and 1 in every 14 children with Down syndrome will also have an

> autistic spectrum disorder. This is much higher than the incidence

> rate for children without Down syndrome. According to the information

> that is available, children with Down syndrome are often not diagnosed

> or evaluated for autism spectrum disorders until much later in life.

> The average age of diagnosis in children being between 9 and 14 years

> old. I have heard from families whose adult children with Down

> syndrome are only now being diagnosed as also having autism. "

> (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

>

> Sherry, mom to 21 DS-Autism

> PS welcome to the list!!!!

>

>

>

[Guest guest]

, were my son at your daughter's age been given a doll and a spoon, he

would have spent the 15 minutes shaking the doll or banagiang athe spoon on

something. Imagination is not something I ever attributed to his play!

But our kids are all different.

Mine is mindlessly affectionate - he will hug every adult that he meets -

and then ask their name. Hardly indicates affection - more like rote

behavior.

He will hug and rub noses with me or my husband, or the young man with whom

he lives.

Elie greets every person who comes in his circle - but after hugging and

asking their name, he wanders away and sit in a quiet spot to flap what ever

he is holding.

Read some, look at your daughter, but if you suspect ASD _ don't wait and

don't let a pediatrician tell you to wait, she is too young. Children as

young as 2 or so with DS have been dx with ASD. And the earlier you know,

the earlier you can work on the sensory and social issues.

On Fri, Aug 6, 2010 at 6:47 PM, our_family01 wrote:

>

>

> Thanks so much for the links. I'll definitely check them out.

>

> That is interesting what you said about kids with DS and autism sometimes

> having more imaginative play and affection. Those are the two things on the

> autism list that don't fit Aimee. Her imaginative play is very repetitive

> (spending 15 minutes feeding an empty spoon to her baby doll with very

> little change in how she's doing it) but she does do some pretend play. She

> also is very affectionate with me, fairly affectionate with my husband and a

> little bit affectionate with our sons. She is not at all interested in

> people outside the family, though, and even with us if she is " spaced out "

> or upset then it is hard to break through and get her attention.

>

> Just trying to unravel it all. Thanks again.

>

> ~

> browneyedblessings.blogspot.com

>

>

> >

> >

> > Go to medical series on the left, then click on Autism and PDD

> > http://www.riverbendds.org/index.htm

> > Read especially Capone and Joan Medlen's article from Disability

> Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy

> Krieger is someone who has researched the dual dx....not too much info out

> there actually.

> >

> > You can pretty much go by the criteria for Autism itself allowing for a

> bit more demonstration of affection and sometimes more imitative play. This

> wasn't true for us but the diagnosis is handed out a bit more freely these

> days.

> >

> >

> > More saved info:

> >

> > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> >

> > " Down Syndrome and Autism Internet Information Center

> >

> > A child with Down syndrome is born in 1 out of every 800 births. An

> > estimated 7-10% of those children will be diagnosed as also having an

> > autistic spectrum disorder. That means somewhere between 1 in every 10

> > and 1 in every 14 children with Down syndrome will also have an

> > autistic spectrum disorder. This is much higher than the incidence

> > rate for children without Down syndrome. According to the information

> > that is available, children with Down syndrome are often not diagnosed

> > or evaluated for autism spectrum disorders until much later in life.

> > The average age of diagnosis in children being between 9 and 14 years

> > old. I have heard from families whose adult children with Down

> > syndrome are only now being diagnosed as also having autism. "

> > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> >

> > Sherry, mom to 21 DS-Autism

> > PS welcome to the list!!!!

> >

> >

> >

[Guest guest]

I appreciate the information. I do think that if Aimee has autism that it is

one the higher end of the spectrum. Or maybe she doesn't have it at all and

it's something else (like sensory processing disorder).

Thanks also for saying that it's not too early to be wondering about this and

trying to get a diagnosis. Our pediatrician (who I really love and have always

agreed with up until now) told me that she is " too young developmentally " for a

diagnosis and all we could do is wait and see. That didn't seem right to me

because I've heard that kids are being diagnosed earlier and earlier - even

those who have DS. And besides, aren't they always saying that early detection

is crucial? So, I called her back today and asked for a referral to a

developmental pediatrician. We also have an appointment at our local down

syndrome clinic for next month so if nothing else I'll ask them to point us in

the right direction.

Would you mind if I explain some of the behaviors we're seeing? I would love

your feedback (and that of anyone else who is reading). I hope I'm wrong and

she doesn't have autism but I don't want to ignore something that really is

there. There is definitely something " different " about Aimee and it's getting

more pronounced as time goes on.

I mentioned some of her postive behaviors in the email below but here are some

of the concerning things we are seeing:

*Never makes eye contact for more than a second or two - if she is looking at

your face her gaze is centered on your mouth

*Never comes when she is called and often seems to not hear us or know we're

even talking to her (unless we get her attention some other way like patting her

shoulder)

*Spends a lot of time agitated - just not settling, doing this yelling thing

where she just hollars over and over (this is getting progressively worse and

mroe frequent)

*Multiple times a day she will do this manic giggling thing while staring at

something inanimate like the corner of her crib or more recently it's her hand

held up close to her face. She laughs and laughs, sometimes for a long time.

*Stimming by looking to the ceiling and tossing her head, walking around doing

this repetive motion with her hands or bending over paralell to the floor and

waving them back and forth

*Never points at things and does not look when we point at something

*People who aren't in our family just don't exist to her - she rarely looks at

them or interacts with them (she used to be like this with us too when we first

adopted her but has come to a point of doing better with us - we work with her a

lot and I think we're probably already doing a lot of the things that you're

supposed to do with a child who has autism)

*Moments where she seems angry and is distructive for no apparent reason - she

will walk around knocking things off of tables, dumping out things, emptying

cabinets. And it's not in a " happy, curious toddler sort of way " it's more of a

tantrum thing though she doesn't usually scream/cry while she's doing it

*Occasionally she will pretend like I mentioned below but mostly she just

carries things around in her hands or fiddles with them. She doesn't focus on

just one part, though, like they say in autism publications

*Spends the majority of her time either sitting quietly staring off into space

(usually with an item in her hand but not playing with it) or else she is just

wandering around aimlessly (again usually with an object in her hand that she's

not playing with)

I am sure there are more but those are the things that immediately come to mind.

Sorry this reply got kind of long. Thank you in advance for reading and for the

feedback. I really appreciate it.

~

>

> , were my son at your daughter's age been given a doll and a spoon, he

> would have spent the 15 minutes shaking the doll or banagiang athe spoon on

> something. Imagination is not something I ever attributed to his play!

> But our kids are all different.

>

> Mine is mindlessly affectionate - he will hug every adult that he meets -

> and then ask their name. Hardly indicates affection - more like rote

> behavior.

>

> He will hug and rub noses with me or my husband, or the young man with whom

> he lives.

>

> Elie greets every person who comes in his circle - but after hugging and

> asking their name, he wanders away and sit in a quiet spot to flap what ever

> he is holding.

>

> Read some, look at your daughter, but if you suspect ASD _ don't wait and

> don't let a pediatrician tell you to wait, she is too young. Children as

> young as 2 or so with DS have been dx with ASD. And the earlier you know,

> the earlier you can work on the sensory and social issues.

[Guest guest]

Hi & welcome to the group!

, I think I understand the confousion & the links provided to you are

great.

I say I think I understand because for the past 14 of my DJ's 15 years, I have

been in flux about whether he is or is not on the ASD spectrum.

The very first time I laid eyes on him (I was not his mom then)I remember

thinking " uh-oh " as I observed & did developmental evals.

I also thought he was very messed up globally, which made it extremely difficult

if not impossible to determine autism. I suspected hearing issues which turned

out to be valid. Hearing issues can cause similar affect to ASD, by the way.

When I did become his mama, my focus was on being a mama, getting all services

needed & trying to make up for lost time within the finite developmental window

of opportunity that he had for some things.

It was always in the back of my mind though-the ASD component & emerged more

frequently after he turned 5. I honestly did not know then that a dual dx was

possible & for many years did not know nor did anyone mention the possibility.

To compound my uncertainty, I had worked with very severe ASD children as well

as provided Lovaas (ABA)therapy privately. These children did not have any

other dx & DJ did not present as they did. Instead, DJ had many but not all the

characteristics & none of the wildness, intellect or speech (acquired)

About the time that I was searching & searching the web for answers I found this

group. At the time, everything people shared here was more familiar than the

regular DS groups. Around the same time, our ped dr saw DJ stimming his woody

doll & ASKED me if he was autistic(?!). I responded with an " I have no

idea-what do you think " ? She glanced at dad & just softly said something about

the stimming & changed the subject.

Then my adult son happened to blurt out the same thing one day-a son that was

around the kiddos I had taught but never knew anyone with ASD. So something was

pretty obvious to both the trained & untrained eye.

In 8th grade, the school system (finally) did an eval-I think to shut me up

about DJ's " autistic like tendencies " . Their conclusion was that for " their "

purposes he is not " considered " autistic. Whatever that means. That was a year

ago. I purposefully did not pursue a further eval last year because our family

needed the time for some healing from our 8th grade experience & other things.

So, we still really do not " know " if DJ is or is not on the spectrum. But I

have to say that the things we have to deal with & work on the MOST are not DS

issues (except medically) but rather things that scream ASD.

I am with Sara & others. In the olden days, no one would " label " a child ASD

prior to age 5. That has changed apparently. Which is good because additional

therapies or services can be utilized.

To eliminate other things that could be impacting your child,I would like to

suggest you seek a comprehensive eval with a ped. ENT to rule out any hearing

issues & same with a ped ophthalmologist.

Heart hugs on your journey.

Kris

> > >

> > >

> > > Go to medical series on the left, then click on Autism and PDD

> > > http://www.riverbendds.org/index.htm

> > > Read especially Capone and Joan Medlen's article from Disability

> > Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy

> > Krieger is someone who has researched the dual dx....not too much info out

> > there actually.

> > >

> > > You can pretty much go by the criteria for Autism itself allowing for a

> > bit more demonstration of affection and sometimes more imitative play. This

> > wasn't true for us but the diagnosis is handed out a bit more freely these

> > days.

> > >

> > >

> > > More saved info:

> > >

> > > http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

> > >

> > > " Down Syndrome and Autism Internet Information Center

> > >

> > > A child with Down syndrome is born in 1 out of every 800 births. An

> > > estimated 7-10% of those children will be diagnosed as also having an

> > > autistic spectrum disorder. That means somewhere between 1 in every 10

> > > and 1 in every 14 children with Down syndrome will also have an

> > > autistic spectrum disorder. This is much higher than the incidence

> > > rate for children without Down syndrome. According to the information

> > > that is available, children with Down syndrome are often not diagnosed

> > > or evaluated for autism spectrum disorders until much later in life.

> > > The average age of diagnosis in children being between 9 and 14 years

> > > old. I have heard from families whose adult children with Down

> > > syndrome are only now being diagnosed as also having autism. "

> > > (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

> > >

> > > Sherry, mom to 21 DS-Autism

> > > PS welcome to the list!!!!

> > >

> > >

> > >

[Guest guest]

Hi, , and welcome!

My (5, DS/ASD) had his first dev ped appt at 6 mos', as part of his

appointment with the T-21 clinic (he also saw PT and, in later visits, OT). At

6 months, the dev ped mentioned that had " low visual attentiveness " ,

which was sometimes associated with autism. She dangled a bright red toy in

front of him and he didn't seem to care. I also told her how he stimmed. He

used to lie on his back, trill his voice (like he was doing a rolling 'r' in the

back of his throat) and kick his legs up and down rhythmically, legs working

together.

was always great at imitating. At one year, his teacher signed him out

of early intervention and said that there was no way he was autistic because he

loved pointing at pictures in books and was too calm. But, he didn't make eye

contact. He doesn't do social referencing ( " checking in " with us when he greets

someone, or looking at me just to smile). He is great at problem-solving and

motor planning, but communication is hard and he doesn't recognize danger.

Anyway, he was dx'd with PDD at 3, and then autism at 4.

Hth!

Sent from my iPhone

I appreciate the information. I do think that if Aimee has autism that it is one

the higher end of the spectrum. Or maybe she doesn't have it at all and it's

something else (like sensory processing disorder).

Thanks also for saying that it's not too early to be wondering about this and

trying to get a diagnosis. Our pediatrician (who I really love and have always

agreed with up until now) told me that she is " too young developmentally " for a

diagnosis and all we could do is wait and see. That didn't seem right to me

because I've heard that kids are being diagnosed earlier and earlier - even

those who have DS. And besides, aren't they always saying that early detection

is crucial? So, I called her back today and asked for a referral to a

developmental pediatrician. We also have an appointment at our local down

syndrome clinic for next month so if nothing else I'll ask them to point us in

the right direction.

Would you mind if I explain some of the behaviors we're seeing? I would love

your feedback (and that of anyone else who is reading). I hope I'm wrong and she

doesn't have autism but I don't want to ignore something that really is there.

There is definitely something " different " about Aimee and it's getting more

pronounced as time goes on.

I mentioned some of her postive behaviors in the email below but here are some

of the concerning things we are seeing:

*Never makes eye contact for more than a second or two - if she is looking at

your face her gaze is centered on your mouth

*Never comes when she is called and often seems to not hear us or know we're

even talking to her (unless we get her attention some other way like patting her

shoulder)

*Spends a lot of time agitated - just not settling, doing this yelling thing

where she just hollars over and over (this is getting progressively worse and

mroe frequent)

*Multiple times a day she will do this manic giggling thing while staring at

something inanimate like the corner of her crib or more recently it's her hand

held up close to her face. She laughs and laughs, sometimes for a long time.

*Stimming by looking to the ceiling and tossing her head, walking around doing

this repetive motion with her hands or bending over paralell to the floor and

waving them back and forth

*Never points at things and does not look when we point at something

*People who aren't in our family just don't exist to her - she rarely looks at

them or interacts with them (she used to be like this with us too when we first

adopted her but has come to a point of doing better with us - we work with her a

lot and I think we're probably already doing a lot of the things that you're

supposed to do with a child who has autism)

*Moments where she seems angry and is distructive for no apparent reason - she

will walk around knocking things off of tables, dumping out things, emptying

cabinets. And it's not in a " happy, curious toddler sort of way " it's more of a

tantrum thing though she doesn't usually scream/cry while she's doing it

*Occasionally she will pretend like I mentioned below but mostly she just

carries things around in her hands or fiddles with them. She doesn't focus on

just one part, though, like they say in autism publications

*Spends the majority of her time either sitting quietly staring off into space

(usually with an item in her hand but not playing with it) or else she is just

wandering around aimlessly (again usually with an object in her hand that she's

not playing with)

I am sure there are more but those are the things that immediately come to mind.

Sorry this reply got kind of long. Thank you in advance for reading and for the

feedback. I really appreciate it.

~

>

> , were my son at your daughter's age been given a doll and a spoon, he

> would have spent the 15 minutes shaking the doll or banagiang athe spoon on

> something. Imagination is not something I ever attributed to his play!

> But our kids are all different.

>

> Mine is mindlessly affectionate - he will hug every adult that he meets -

> and then ask their name. Hardly indicates affection - more like rote

> behavior.

>

> He will hug and rub noses with me or my husband, or the young man with whom

> he lives.

>

> Elie greets every person who comes in his circle - but after hugging and

> asking their name, he wanders away and sit in a quiet spot to flap what ever

> he is holding.

>

> Read some, look at your daughter, but if you suspect ASD _ don't wait and

> don't let a pediatrician tell you to wait, she is too young. Children as

> young as 2 or so with DS have been dx with ASD. And the earlier you know,

> the earlier you can work on the sensory and social issues.

[Guest guest]

,

I am in no way an expert..only a mom for 21 yrs of a kid with dual dx. What Kris

said is key...get as much info as you can about her medical condition; rule out

everything top to bottom. Many autistic symptoms come from a physical disease or

pain that is unable to be expressed by the child. Get started asap on a form of

communication for her...sign, AAC, pecs...whatever.

Sometimes it is easier to get the autism dx from a center that specializes in

Autism...don't know where you are. My opinion? it's never too early. Every week

counts with these kids. And another completely subjective opinion...she sure

sounds like she could very well have autism to me.

Again just my opinion...hope you get an appointment soon and some answers.

Sherry

[Guest guest]

, Welcome to our group. This group has been my lifeline for many years. I

joined when my son was 9 yrs old and now he is 15 yrs old. What autism looked

like for my son started at 3 yrs old were these symptoms: toe walking, slapping

himself,stemming (hold ing Woody from Toy Story up and looking at him out of

the corner of his eye,rocking,screaming for no reasons, fecal smearing,waking up

at 2:00a.m. and partying until time for school. He later became OCD after a

severe staph infection. I have known since he was 3 yrs old but could not

convince the local Ped. until an Autism center opened here when my son was 9 yrs

old. The Autism Center dx him within about 5 minutes with Autism. has

regressive autism. When I started suspecting the autism I looked to the internet

and found the Riverbend Group with the Article I believed Sherry mentioned by

Dr. Capone, and other articles by Dr. Marie , etc. I have met Dr.

Capone and he truly know how to Dx a child that is dual dx with DS and Autism.

This group is truly a wealth of information that has been a wonderful support

group. I never felt like I fit into the groups of parents that had kids with

only DS because my son did not progress like those kids or have behaviors like

those kids. It is nice to know you have a place to belong where other children

act like your child and other parents share how they have dealt with the

differences. Welcome again. Cyndi B

>

> I am sure there has been much discussion of this on the group but I'm not

having any luck finding them.

>

> Can someone help me understand what autism looks like in people who have down

syndrome? Are the traits different? Is there anything that is absent or

anything added? Just trying to do my own research while we wait for our

evaluation.

>

> Thanks!

>

> ~

> browneyedblessings.blogspot.com

>

[Guest guest]

Welcome all new comers! I am Liz, mom to 10.5 yr. old Tori (aka former

Queen of the Head Banger's Ball). I joined this family back in 2003 when

Tori was first dxd and THEY ARE MY LIFELINE. Clues that Tori had ASD- Head

banging; flapping; major sensory issues; SIB; screaming for hours; sleepless

nights for over 6 months; major transition issues; and our favorite-the

infamous Stop/Drop/Flop. Since, we have also been dxd with

OCD/ODD/Non-Verbal Learning Disability/GERD/Hashimotos/repetative

motions-sounds/OSA and a few more I can't remember off the top of my head

right now.

Tori stood out from the typical kids with Ds that we associated with-She was

extremely verbal early, did not walk until she was just short of 4 yrs.,

over-stimmed & overwhelmed by being outdoors, hated to leave the house,

could not socialize with other kids.

Liz

[Guest guest]

oh. I left out descriptives in my dissertation. The following are the

descriptives of my not officially dx'd with ASD son with DS:

*No eye contact (until long after evil new mom arrived)

*No laughter or smiles until long after age 2 & with constant training involved

*NO social overtures or response to same

*NO play of any kind until the past couple of years

*Sudden change in eating habits

*Reports of rocking in crib prior to evil new mom's arrival

*Rocking AND head banging noted by evil new mom

*Head banging continues unless caught by evil mom

*NO tolerance to touch: head, face, hands, mouth, feet

*NO tolerance to change in environs-which included going anywhere

*Prefers to be apart from others-even beloved people. Makes me sad-lonesome boy.

*Strong food & drink preferences

*No huggles, no kisses, no hugs until recently

*NO tolerance to textures or stuff touching his face, hands, feet

*Dangled or twirled strings or Woody & Jessie for years

*Used to twirl self until recently

*Played videos over & over (re-wind syndrome)

*Ditto dvds & cds

*Sameness in all things from shampoo to cracker shape to frakking yogurt

*Until he entered high school (last year) NEVER slept through the night.

Awakenings between 3-5 am. I have no idea what changed.

*Chews on thumb & hums; used to do these weird mouth gestures & noises.

*Never went trick or treating or to a party as it freaked him out (would not

enter door)

*Until middle school, would not go into a restaurant without freaking out &

huddling in a corner. Guess who stopped going out a long time ago. Did same

with relatives homes.

*Ditto haircuts until my grand scheme this past year (yeah me, sigh)

*Freaked out if it rained-only in the car(!)

*Freaked out with showers. The beach. Name anything.

*More that I have forgotten or blocked out.

*Strangely, did not cry if hurt until recently

*Never indicated pain

*Absolutely no concept of danger

(I can't include the speech components cause of the hearing issues.)

Yep. No ASD tendencies here folks. Just your average kiddo with DS. (My ass)

Kris

>

> Welcome all new comers! I am Liz, mom to 10.5 yr. old Tori (aka former

> Queen of the Head Banger's Ball). I joined this family back in 2003 when

> Tori was first dxd and THEY ARE MY LIFELINE. Clues that Tori had ASD- Head

> banging; flapping; major sensory issues; SIB; screaming for hours; sleepless

> nights for over 6 months; major transition issues; and our favorite-the

> infamous Stop/Drop/Flop. Since, we have also been dxd with

> OCD/ODD/Non-Verbal Learning Disability/GERD/Hashimotos/repetative

> motions-sounds/OSA and a few more I can't remember off the top of my head

> right now.

>

> Tori stood out from the typical kids with Ds that we associated with-She was

> extremely verbal early, did not walk until she was just short of 4 yrs.,

> over-stimmed & overwhelmed by being outdoors, hated to leave the house,

> could not socialize with other kids.

>

> Liz

>

>

>

[Guest guest]

Thank you so much to all of you for the replies. I can tell that this is a

great group and I know I will learn a lot from you.

Oh, another thing about Aimee that I wanted to ask about. I have heard the food

issues can be an autism trait. Does anyone here have a child with infantile

anorexia? We got that diagnosis at the beginning of the year after spending 3

weeks in an in-patient feeding program. Aimee does not appear to have any

desire to eat or drink. She either does not feel hunger/thirst or else she

doesn't care about those feelings. We finally had a g-tube placed back in

February. She gets about 90% of her calories and all of her fluids through the

tube. She is healthy now but still has very little interest in eating.

Just curious if anyone has ever seen this with autism. I have not yet found

anyone with just DS who has such severe feeding issues.

~

[Guest guest]

PS:

And I am convinced that DJ would still not have certain " skills " in place (ie

eye contact, sensory, play) if I had not set up our environs to promote skills

from day one. And work it every waking hour he's with us-in any environ. Dad

is even " trained " so that it is just second nature for us to be in this

" teaching " & " prep " mode. Albeit in as natural & incidental way as is feasible.

And yes, I get weary. And insecure.

But I cannot begin to imagine what it is like for families that don't have my

background (even though my background is now a decade behind the times)

Heart hugs for everybody.

Kris

> >

> > Welcome all new comers! I am Liz, mom to 10.5 yr. old Tori (aka former

> > Queen of the Head Banger's Ball). I joined this family back in 2003 when

> > Tori was first dxd and THEY ARE MY LIFELINE. Clues that Tori had ASD- Head

> > banging; flapping; major sensory issues; SIB; screaming for hours; sleepless

> > nights for over 6 months; major transition issues; and our favorite-the

> > infamous Stop/Drop/Flop. Since, we have also been dxd with

> > OCD/ODD/Non-Verbal Learning Disability/GERD/Hashimotos/repetative

> > motions-sounds/OSA and a few more I can't remember off the top of my head

> > right now.

> >

> > Tori stood out from the typical kids with Ds that we associated with-She was

> > extremely verbal early, did not walk until she was just short of 4 yrs.,

> > over-stimmed & overwhelmed by being outdoors, hated to leave the house,

> > could not socialize with other kids.

> >

> > Liz

> >

> >

> >

[Guest guest]

...here's a reply about Autism treatment centers in Texas from Irma

I have one place in mind & that is the Autism Treatment Center.

http://www.atcoftexas.org/

I'll ask several of my friends out there in the DFW area which place they ended

up receiving the autism for their child w/DS.

There is also Carol from the Dallas area, hopefully she'll see this.

Irma

[Guest guest]

Sure I can help you.

My son has MDS, sat, crawled. walked when my other kids did. Originally, he was

misdiagnosed with Trisomy 21. Being a nurse, and given the information they told

me, the story was not matching up.

I saw my son as bright in a quirky way.

At first, I saw no difference between him and my other children or myself. (We

all have almond shaped eyes, sandal gap toe, and my girls have sydney lines;

whereas, he had normal hand lines.)

When something regressed with his speech, I was told he had " speech delay "

commonly associated with Trisomy 21. (No need for me to correct the doctors on

the Trisomy 21 bit because most of them told me that Ds was DS. I later found

out there are some differences.) Anyways, they keot telling me he would catch

up, but it kept getting worse. we had already discovered he had a severe gluten

intolerance by elimination diet (despite the negative Celiac and allergy tests).

He used to vomit like a cat with hair balls EVERYWHERE when we gave him crackers

or bread. That should have been my first clue. Then came the dye allergy. Then

the immune system issues. At this time, we still did not suspect anything other

than DS or MDS.

Every doctor and SLP we visited would pat me on the shoulder and say, " He'll

catch up, it is just the down syndrome. " Dumb me believed it. but I recalled him

speaking before in sentences. Something was wrong.

I persisted, only to discover and take my findings to the doctor that he did not

have speech delay, he in fact had full blown apraxia. No one knew why and no one

could give me a cause. (Everything has a cause.)

Still, they blamed the DS, but I knew in my heart that was not it.

He had quirky behavior like lining up VHS movies across the living room floor

everyday. he was potty trained, then regressed from that. (of course, I thought

that was because of the school placing him in diapers, which could have been).

Anyway, he had loose bowels a lot. And that was not something I heard about in

children with DS. There were many other things: ignoring when his name was

called at times (even when he could hear you through walls across the house in a

silent whisper!); not interacting with his environment in normal ways; spinning

until he fell down (which I used to pass off as a childhood thing because I did

it when I was a child); fantastic recall of previous days events (something I

promised and hoped he's forget after going to sleep); ability to read sign

language fluently not matter what the order of the words; other little things

like figuring out how to invert the picture on his personal DVD player (hilst we

could not figure out how to get it playing the right away again, and he seemed

to get pleasure from knowing how to do something so odd).

I began researhing what I *knew* was wrong and the more I read about being GF,

which I thought he mostly was, the more I read about other diet issues (casein,

dyes, nitrates, preservatives, etc...) A lot of what these parents were talking

about fit my kid to a *T*.

All the while, I started researching his apraxia, which seems to be his main

issue. I kept ending up in the same spot-Autism. (Something I was sure my son

did NOT have.) One day, I decided to look at the signs and symptoms---everything

from medical s/s to physical s/s. Strange thing, nearly every s/s was a dead on

match.

So, I decided to remove caseun and the other things that were not already

removed (like dyes). I read all these wonderful stories about neurological soft

signs disappearing when these kids went on *THE DIET*.

Well, this held true for my son as well. First thing I noticed, he no longer

lined up videos or toys across our living room floor (an all day long ritual

that occurred everyday). He began to play with toys in a meaningful way; the way

they were supposed to be played with (kids with DS play with toys correctly;

kids with autism do not, unless they are on the right protocol for diet,

etc...). He began to speak more clearly at times. He began to show me things.

Much improved. But at times, he still retreats to his own world; usually this is

when he vegetates in front of the TV.

Other things I noticed was that he was extremely active (not typical of a kid

with just DS, usually); it was so obvious that there was nothing wrong with his

gross motor tone that the geneticist and a pediatrician commented on it!

Once I began to treat the autism, my son began to act in appropriate ways. (That

is not to say that he does not have some oddities still.)

I think finding his Mosaicism was a fluke, buut finding his autism gave him his

start in life. I can treat autism; I cannot treat down syndrome, as I cannot

remove my son's extra chromosomes.

Does that help any?

>

> I am sure there has been much discussion of this on the group but I'm not

having any luck finding them.

>

> Can someone help me understand what autism looks like in people who have down

syndrome? Are the traits different? Is there anything that is absent or

anything added? Just trying to do my own research while we wait for our

evaluation.

>

> Thanks!

>

> ~

> browneyedblessings.blogspot.com

>

[Guest guest]

I have to add that is a quirky thing that kept my son from beng diagnosed. His

friendly nature has fooled doctors into thinking he has no social interaction

issues, which just was not true.

i totally agree that you just look at the autism and not the DS and you will

definitely see it. The dx of DS never fit my son; he always seemed atypical in

that aspect. The dx of autism fits to a perfect *T*.

>

>

> Go to medical series on the left, then click on Autism and PDD

> http://www.riverbendds.org/index.htm

> Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

>

> You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

>

>

> More saved info:

>

> http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

>

> " Down Syndrome and Autism Internet Information Center

>

> A child with Down syndrome is born in 1 out of every 800 births. An

> estimated 7-10% of those children will be diagnosed as also having an

> autistic spectrum disorder. That means somewhere between 1 in every 10

> and 1 in every 14 children with Down syndrome will also have an

> autistic spectrum disorder. This is much higher than the incidence

> rate for children without Down syndrome. According to the information

> that is available, children with Down syndrome are often not diagnosed

> or evaluated for autism spectrum disorders until much later in life.

> The average age of diagnosis in children being between 9 and 14 years

> old. I have heard from families whose adult children with Down

> syndrome are only now being diagnosed as also having autism. "

> (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

>

> Sherry, mom to 21 DS-Autism

> PS welcome to the list!!!!

>

>

>

[Guest guest]

I think my husband has mosaicism (not sure if for DS?), and I am certain he is

on the spectrum. With mosaics, if you know the person, you are able to

physically see the phenotype of at least two different cell lines (like a

chimera in a way). My husband has at least 3 cell lines that I can see, but no

blood work to back it up.

>

>

> Go to medical series on the left, then click on Autism and PDD

> http://www.riverbendds.org/index.htm

> Read especially Capone and Joan Medlen's article from Disability

Solutions...it's 10 years old but still relevant. Dr. Capone at Kennedy Krieger

is someone who has researched the dual dx....not too much info out there

actually.

>

> You can pretty much go by the criteria for Autism itself allowing for a bit

more demonstration of affection and sometimes more imitative play. This wasn't

true for us but the diagnosis is handed out a bit more freely these days.

>

>

> More saved info:

>

> http://www.disabilitysolutions.org/newsletters/files/three/3-5-6.pdf

>

> " Down Syndrome and Autism Internet Information Center

>

> A child with Down syndrome is born in 1 out of every 800 births. An

> estimated 7-10% of those children will be diagnosed as also having an

> autistic spectrum disorder. That means somewhere between 1 in every 10

> and 1 in every 14 children with Down syndrome will also have an

> autistic spectrum disorder. This is much higher than the incidence

> rate for children without Down syndrome. According to the information

> that is available, children with Down syndrome are often not diagnosed

> or evaluated for autism spectrum disorders until much later in life.

> The average age of diagnosis in children being between 9 and 14 years

> old. I have heard from families whose adult children with Down

> syndrome are only now being diagnosed as also having autism. "

> (http://disabilitysolutions.org/dsaiic/downsyndrome.htm)

>

> Sherry, mom to 21 DS-Autism

> PS welcome to the list!!!!

>

>

>

[Guest guest]

,

I am sure you have already had her hearing checked. But on the other note, you

are descibing autism my dear.

Have you tried a GFCF diet (many people say go Soy free as well)?

Autism is treatable. Down Syndrome is not.

I think if you treat the autism, you will see a dramatic difference in your

child.

How's her speech?

> >

> > , were my son at your daughter's age been given a doll and a spoon, he

> > would have spent the 15 minutes shaking the doll or banagiang athe spoon on

> > something. Imagination is not something I ever attributed to his play!

> > But our kids are all different.

> >

> > Mine is mindlessly affectionate - he will hug every adult that he meets -

> > and then ask their name. Hardly indicates affection - more like rote

> > behavior.

> >

> > He will hug and rub noses with me or my husband, or the young man with whom

> > he lives.

> >

> > Elie greets every person who comes in his circle - but after hugging and

> > asking their name, he wanders away and sit in a quiet spot to flap what ever

> > he is holding.

> >

> > Read some, look at your daughter, but if you suspect ASD _ don't wait and

> > don't let a pediatrician tell you to wait, she is too young. Children as

> > young as 2 or so with DS have been dx with ASD. And the earlier you know,

> > the earlier you can work on the sensory and social issues.

>

[Guest guest]

,

more from Irma for you:

This sounds great!

Sherry,

Found an old post that Carole ('s mom) had shared.

A wee bit, I'm " cc " this to Carole too.

Re:

The Down Syndrome Guild of Dallas has started a dual diagnosis subgroup this

year (2009). We meet about 4 times a year to share information, etc. If you

contact the DSG office (dsged@... or ).

My Best,

Irma

[Guest guest]

Thank you for the feedback .

Her speech is pretty limited. She says about 10 words on a daily basis. The

words are not very clear and I don't think that anyone outside our home would

understand most of them. There are about 20-25 other words that she has used

for a few days (enough that we put them on her list of words for her speech

teacher) but now I'm realizing that she has lost those words again.

She does really well with sign and that is her main way to communicate. She

picks up signs very fast and has even created a few of her own. We had a foster

child a while back who was deaf and so my husband and I are both able to

communicate pretty well in sign. I am so thankful for that now since it looks

like that will be Aimee's main way of communicating.

I appreciate what you said about being able to treat autism. To be honest this

is all really throwing me for a loop. I was prepared for DS (and actually have

a huge love for people with DS) but the autism is just scary to me. I keep

hoping I'm wrong about it.

~

> > >

> > > , were my son at your daughter's age been given a doll and a spoon,

he

> > > would have spent the 15 minutes shaking the doll or banagiang athe spoon

on

> > > something. Imagination is not something I ever attributed to his play!

> > > But our kids are all different.

> > >

> > > Mine is mindlessly affectionate - he will hug every adult that he meets -

> > > and then ask their name. Hardly indicates affection - more like rote

> > > behavior.

> > >

> > > He will hug and rub noses with me or my husband, or the young man with

whom

> > > he lives.

> > >

> > > Elie greets every person who comes in his circle - but after hugging and

> > > asking their name, he wanders away and sit in a quiet spot to flap what

ever

> > > he is holding.

> > >

> > > Read some, look at your daughter, but if you suspect ASD _ don't wait and

> > > don't let a pediatrician tell you to wait, she is too young. Children as

> > > young as 2 or so with DS have been dx with ASD. And the earlier you know,

> > > the earlier you can work on the sensory and social issues.

> >

>

[Guest guest]

That's great! We are members of the DSGD but aren't very connected so I didn't

know about this. I will definitely call.

~

>

> ,

> more from Irma for you:

> This sounds great!

>

>

> Sherry,

>

>

> Found an old post that Carole ('s mom) had shared.

> A wee bit, I'm " cc " this to Carole too.

> Re:

> The Down Syndrome Guild of Dallas has started a dual diagnosis subgroup this

year (2009). We meet about 4 times a year to share information, etc. If you

contact the DSG office (dsged@... or ).

>

>

> My Best,

> Irma

>

>

[Guest guest]

,

This might sound odd, but I was actually relieved in many ways that his speech

and oddities are from autism. Many people here may ask, " Why? " Because it

confirms what I have seen all along...that my son is extremely smart (you see

doctors saw the words " Down syndrome " and mistakenly thought that automatically

meant " will be severely mentally retarded " (that is what they said). During his

first 3 years of llife, I was seeing something totally opposite. I was real

confused. Second, people are recovering from autism. The old way of thinking

(refrigerator moms) was no longer the scenario. (Besides I am no refrigerator

mom....lol)

My son used to look at my lips as well. 3 months off casein and his tympanic

membranes were moving normally. (In my family, we have characteristic allergy/

fluid in middle ears, but still obviously and outwardly able to hear.) He did

receive a hard of hearing diagnosis, but that may not stand much anymore (except

for fluctuating conductive hearing loss, under the law). Casein removal removed

dark circles (for the most part) around the eyes for all of us. (They still will

appear temporarily if extremely tired.)

Sign language works well for us (the adversaries say, " who will ge use it with,

as most do not know sign language " . The advocates say, " many people do know sign

language; you know sign language; and ot always better to get an interpreter for

a person than to try and understand how PECS work (much easier for most people

and more widely recognized).

That said, I do recommend using a PECS/PCS system. You can get these free on the

Internet. (Check the files under my name, as I have listed a bunch of free

links. One is UK and some of the words are a wee bit different, but most are the

same. You only need the pix anyways.) I like PECS/PCS at home, NOT to replace

communication (verbal and sign language combined...we do Signed Exact English),

but to help him sequence events in his brain. For me, it is a waste of precious

time and bilingualness (is that word even right?) to replace his acquired

verbage and S.E.E. with pictures. For me, that would be a regression. We have

trouble with " First, Then " , " Routines " , and " Schedules " . Yes, he likes routine,

which is what makes these boards great. They are also great for learning and

observing on a daily basis (i.e. weather charts, new tasks, etc...) BUT, he

still has overexpression of the genes (stubborn as all get out) and he can throw

a fit like no other. (Although a huge amount of that disappeared with diet).

We do not go all out like some do on other autism groups. Why? Because my son

had no vaccines (one questionable beyond my control, still can't confirm or

deny) and his exposure is limited to things I cannot control to sources of lead,

mercury, arsenic, cadmium, etc... Airborn sources cannot be controlled outside

of an air filtrated environment. We limit our medicines to " have to have "

medicines and do nothing without good forethought and research. Instead of

antibiotics, we take GFCF probiotics if I suspect an illness coming on. (That is

not to say that I would not take a dye free antibiotic if needed; I weigh out

the risks and benefits with everything.)

I forgot how old you said your child was (sorry, executive dysfunction going on

here...lol, but seriously). But the time is now to start being proactive. It is

never too early and by no means, never too late.

Your goal, I presume is to communicate with your daughter, correct?

Keep up the sign language.

We purchased ASL books (childrens) from a UK company (Forest Books). They have

many on clearance right now and you can do a conversion rate online to see what

you are truly paying in pounds. They are super fast and very friendly. Be

careful you do not order BSL (British Sign Language) because their system is way

different than ASL. Most ASL can be converted to S.E.E. by putting the words in

order instead of ASL order. If young, you do not necessarily *need* the extra

modifiers that are in SEE until school age, which is when we started (still

doing) introducing -ing, -ed, -s, and so forth.

If you do talk to Forest Books, send them an e-mail and tell them I referred you

( TenEyck); there is no referral incentive, but you can ask them about a

discounted shipping rate for numerous books. They most likely will give it to

you by mentioning my name. 9I have ordered much from them.)

Gallaudet University did a Signed English Project, years ago in the late 70's

early 80's, most of those books are out of print. Good news, Forest Books had

many stored in a warehouse and now have these rare finds on clearance!! Only a

handful of these books are still available through current print or EBay finds.

You can also check some out from the libraries, as many still have them. The

kids LOVE them because the characters in the story are signing the words across

the bottom of the pages. They are very enriching and help your child to pick up

on signl language FAST.

Hopefully this has been helpful for you. (Sorry so long.)

> > > >

> > > > , were my son at your daughter's age been given a doll and a

spoon, he

> > > > would have spent the 15 minutes shaking the doll or banagiang athe spoon

on

> > > > something. Imagination is not something I ever attributed to his play!

> > > > But our kids are all different.

> > > >

> > > > Mine is mindlessly affectionate - he will hug every adult that he meets

-

> > > > and then ask their name. Hardly indicates affection - more like rote

> > > > behavior.

> > > >

> > > > He will hug and rub noses with me or my husband, or the young man with

whom

> > > > he lives.

> > > >

> > > > Elie greets every person who comes in his circle - but after hugging and

> > > > asking their name, he wanders away and sit in a quiet spot to flap what

ever

> > > > he is holding.

> > > >

> > > > Read some, look at your daughter, but if you suspect ASD _ don't wait

and

> > > > don't let a pediatrician tell you to wait, she is too young. Children

as

> > > > young as 2 or so with DS have been dx with ASD. And the earlier you

know,

> > > > the earlier you can work on the sensory and social issues.

> > >

> >

>

[Guest guest]

Kris

You are too funny with your closing!

OMG...I left out the repetitious playing of SCOOBY DOO movies. Thank God I still

love dear ol Scooby Doo, but sometimes I have to deal the tantrums, because I

refuse to watch Scooby Doo all day every day! 8)

My son will cry over tiny incidents and yet lay his hand (and get third degree

burns) on the cooktop surface with no flinching.

My son laughed and played, then regressed (regressive autism?)

Food preferences: I do not know how we ever broke the cycle of wanting pizza

(for every meal!!). I think changing from casein to soy helped? But he still has

preferences for certain foods. (Hmmm...as I read your list, I saw myself in some

ways as a child! Not severe, but definitely saw myself as a hiding cautious

child scared of thunder, loud sounds, and I even have pictures in my family

photos of people in the picture and *me* hiding in the background. I had limited

food preferences and disliked anything like meatloaf which I could not easily

discern the ingredients or mashed potatoes, which maked me gag. I did not like

my hair washed nor cut. And looking back, I acted goofy at times, and I think I

was stimming. Ok, I am starting to wonder about *myself*. One quality I know I

have is that I am what people call *gullible* and sometimes cannot *get* a joke

that is not spelled out. I did have concept of danger, which my two ASD kids do

not, but I was more fearful of strangers (maybe that was instilled in me?).

Socially, I was a lonely child. I remember early on (2 or 3) having friends and

then something happened...I started being alone.)

Anyway, you have given me something to think about here.

> >

> > Welcome all new comers! I am Liz, mom to 10.5 yr. old Tori (aka former

> > Queen of the Head Banger's Ball). I joined this family back in 2003 when

> > Tori was first dxd and THEY ARE MY LIFELINE. Clues that Tori had ASD- Head

> > banging; flapping; major sensory issues; SIB; screaming for hours; sleepless

> > nights for over 6 months; major transition issues; and our favorite-the

> > infamous Stop/Drop/Flop. Since, we have also been dxd with

> > OCD/ODD/Non-Verbal Learning Disability/GERD/Hashimotos/repetative

> > motions-sounds/OSA and a few more I can't remember off the top of my head

> > right now.

> >

> > Tori stood out from the typical kids with Ds that we associated with-She was

> > extremely verbal early, did not walk until she was just short of 4 yrs.,

> > over-stimmed & overwhelmed by being outdoors, hated to leave the house,

> > could not socialize with other kids.

> >

> > Liz

> >

> >

> >

[Guest guest]

: As a parent, I too would be concerned. When my son was aninfant

and toddler, I was so inexperienced with DS let alone ASD, that I just

figured all his stranage behavior was caused by the DS. IT took many years

(and I soooo regret not having the dx earlier to help my son) that his

behavior became magnified by repition and longevity.

So - We always had to direct Elie to look at us when we were speaking. From

a spseech teacher, I learned to put my fingers to my mouth to get him to

focus on the face. We tried to engage him in floor play (befor I ever

learned of Greenspan - wish I had known, again) byour joining him in what

ever he was doing and then trying toget him to do something more

constructive. Like building with blocks in a tower instead of just throwing

them .

Elie cleared table tops, emptied drawers and THREW THINGS for years. But as

we learned that actions and sounds are all communication, we learned to try

to understand his need to communicate anda all of these things lessened.

We found that PECS (pictures to exchange for sounds of things wanted) and

lots of sensory play helped him gradually re-form some behavior.

Now, he still likes to shake or danglae objects, he still freezes sometimes,

and he rarely looks at people in the face for long. BUT - he is forming

sentences that are thoughts from his head - not repititious words. (Instead

of hamburger , FF? He will say - Does Elie want hamburger french frieds -

sayit please! And get us to ask the question).

IMHO - going for a more definitive dx early can't hurt. OF course if you

don't get the answer you think you will get - try again in a couple of

years!! I went five times from age 3-10 before getting an answer which made

sense - and to different places each time.

On Fri, Aug 6, 2010 at 7:57 PM, our_family01 wrote:

>

>

> I appreciate the information. I do think that if Aimee has autism that it

> is one the higher end of the spectrum. Or maybe she doesn't have it at all

> and it's something else (like sensory processing disorder).

>

> Thanks also for saying that it's not too early to be wondering about this

> and trying to get a diagnosis. Our pediatrician (who I really love and have

> always agreed with up until now) told me that she is " too young

> developmentally " for a diagnosis and all we could do is wait and see. That

> didn't seem right to me because I've heard that kids are being diagnosed

> earlier and earlier - even those who have DS. And besides, aren't they

> always saying that early detection is crucial? So, I called her back today

> and asked for a referral to a developmental pediatrician. We also have an

> appointment at our local down syndrome clinic for next month so if nothing

> else I'll ask them to point us in the right direction.

>

> Would you mind if I explain some of the behaviors we're seeing? I would

> love your feedback (and that of anyone else who is reading). I hope I'm

> wrong and she doesn't have autism but I don't want to ignore something that

> really is there. There is definitely something " different " about Aimee and

> it's getting more pronounced as time goes on.

>

> I mentioned some of her postive behaviors in the email below but here are

> some of the concerning things we are seeing:

>

> *Never makes eye contact for more than a second or two - if she is looking

> at your face her gaze is centered on your mouth

> *Never comes when she is called and often seems to not hear us or know

> we're even talking to her (unless we get her attention some other way like

> patting her shoulder)

> *Spends a lot of time agitated - just not settling, doing this yelling

> thing where she just hollars over and over (this is getting progressively

> worse and mroe frequent)

> *Multiple times a day she will do this manic giggling thing while staring

> at something inanimate like the corner of her crib or more recently it's her

> hand held up close to her face. She laughs and laughs, sometimes for a long

> time.

> *Stimming by looking to the ceiling and tossing her head, walking around

> doing this repetive motion with her hands or bending over paralell to the

> floor and waving them back and forth

> *Never points at things and does not look when we point at something

> *People who aren't in our family just don't exist to her - she rarely looks

> at them or interacts with them (she used to be like this with us too when we

> first adopted her but has come to a point of doing better with us - we work

> with her a lot and I think we're probably already doing a lot of the things

> that you're supposed to do with a child who has autism)

> *Moments where she seems angry and is distructive for no apparent reason -

> she will walk around knocking things off of tables, dumping out things,

> emptying cabinets. And it's not in a " happy, curious toddler sort of way "

> it's more of a tantrum thing though she doesn't usually scream/cry while

> she's doing it

> *Occasionally she will pretend like I mentioned below but mostly she just

> carries things around in her hands or fiddles with them. She doesn't focus

> on just one part, though, like they say in autism publications

> *Spends the majority of her time either sitting quietly staring off into

> space (usually with an item in her hand but not playing with it) or else she

> is just wandering around aimlessly (again usually with an object in her hand

> that she's not playing with)

>

> I am sure there are more but those are the things that immediately come to

> mind.

>

> Sorry this reply got kind of long. Thank you in advance for reading and for

> the feedback. I really appreciate it.

>

> ~

>

>

>

> >

> > , were my son at your daughter's age been given a doll and a spoon,

> he

> > would have spent the 15 minutes shaking the doll or banagiang athe spoon

> on

> > something. Imagination is not something I ever attributed to his play!

> > But our kids are all different.

> >

> > Mine is mindlessly affectionate - he will hug every adult that he meets -

> > and then ask their name. Hardly indicates affection - more like rote

> > behavior.

> >

> > He will hug and rub noses with me or my husband, or the young man with

> whom

> > he lives.

> >

> > Elie greets every person who comes in his circle - but after hugging and

> > asking their name, he wanders away and sit in a quiet spot to flap what

> ever

> > he is holding.

> >

> > Read some, look at your daughter, but if you suspect ASD _ don't wait and

> > don't let a pediatrician tell you to wait, she is too young. Children as

> > young as 2 or so with DS have been dx with ASD. And the earlier you know,

> > the earlier you can work on the sensory and social issues.

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

Ugh - the throwing things! I completely forgot to mention that (and actually

didn't realize it could be a characteristic of autism). Aimee's main way of

" playing " is to throw things. We have had no luck in redirecting that behavior

yet. I can't figure out what she is trying to communicate either. Is the

throwing a type of stimming?

First thing Monday morning I am going to start making some calls and get

appointments lined up. I am so glad I found you guys. I almost didn't join

since we don't have a diagnosis but I'm glad I did. Even if we end up with some

other diagnosis it's just nice to know Aimee isn't the only child like this.

She is nothing like the kids with DS that we know.

~

>

> : As a parent, I too would be concerned. When my son was aninfant

> and toddler, I was so inexperienced with DS let alone ASD, that I just

> figured all his stranage behavior was caused by the DS. IT took many years

> (and I soooo regret not having the dx earlier to help my son) that his

> behavior became magnified by repition and longevity.

[Guest guest]

Throwing: Causes deep muscle shock to joints. Gives the satisfaction of

the THUNK - especially if it connects with a person who then goes OUCH! I

tried throwing beenbags at a target, but that wasn't as good as random

throws. I must say - my son's ability to hit a target has always been

good. Should see him now with a baseball or a basketball - still can throw.

On Sat, Aug 7, 2010 at 1:20 PM, our_family01 wrote:

>

>

> Ugh - the throwing things! I completely forgot to mention that (and

> actually didn't realize it could be a characteristic of autism). Aimee's

> main way of " playing " is to throw things. We have had no luck in redirecting

> that behavior yet. I can't figure out what she is trying to communicate

> either. Is the throwing a type of stimming?

>

> First thing Monday morning I am going to start making some calls and get

> appointments lined up. I am so glad I found you guys. I almost didn't join

> since we don't have a diagnosis but I'm glad I did. Even if we end up with

> some other diagnosis it's just nice to know Aimee isn't the only child like

> this. She is nothing like the kids with DS that we know.

>

> ~

>

>

> >

> > : As a parent, I too would be concerned. When my son was aninfant

> > and toddler, I was so inexperienced with DS let alone ASD, that I just

> > figured all his stranage behavior was caused by the DS. IT took many

> years

> > (and I soooo regret not having the dx earlier to help my son) that his

> > behavior became magnified by repition and longevity.

>

>

>

--

Sara- different pathways lead to Nirvana.