question on Asperger Syndrome

[Guest guest]

A mom from another group noted that my son has many symptoms of

Asperger Syndrome. I have been reading JUST A LITTLE on it and the

websites say that AS children DON'T have a delay in speech.

entered EI at 23 months with a 50% speech delay & was Dx with Apraxic.

So mom's with children Dx with AS. What do you think is AS something

I should look into more?

Autism has not been ruled out, but I was told by his Developmental

Ped that he falls into the " border Line " area. The Dev. Ped. doesn't

like to Dx Autism w/o being sure.

Another Dr. gave the label of ADD, but I don't think that

seems right. I think what the Dr. sees as ADD is really symptoms of

's DSI.

Thanks

Heidi- SAHM to 8, 5 (Apraxic, DSI, Word finding

difficults & questionable ADD dx) (VUR, Torticollis,

Plagiocephaly, Late talker no Dx yet)

[Guest guest]

Heidi--

I don't know much about AS either, but before my son Drew was

diagnosed with DSI, I kind of wondered whether he had that or was on

the spectrum of autism, or even if it was early signs of AD/HD as

well. I looked a little at some websites too, and I thought that

Drew did have some of the same symptoms and worried. Once he was

diagnosed by an OT with DSI, which was confirmed by the same

developmental pediatrician that diagnosed Drew's apraxia, it was a

great relief! A LOT of the symptoms/signs of DSI DO overlap with

some of the AS and AD/HD symptoms, so it's easy to see why it can be

misleading unless an expert checks them out.

I can tell you that the more I've learned about DSI, I've realized

that I have it too, had it as a child, however you want to look at

it. But of course, they didn't have this diagnosis 30+ years ago,

and it turns out that fortunately, though just learning on my own and

some of the methods my mother used with me unknowingly were the

things that I needed to cope as I got older. When I described to her

what DSI was all about just a couple of weeks ago, it was if it was a

revelation to her. She had been saying for 35 years that something

was wrong with me (always something nice to hear from your mother,

even as an adult--NOT),but that better explained my behaviors as a

child, as the MDs didn't want to label me as AD/HD as I could sit for

a long time and read books, etc. But I was EASILY distracted (still

am). This fit me to a T.

Maybe do a little extra research on DSI as well as the other

conditions. You will see some overlap, but if you truly think it's

DSI rather than AD/HD, you can point some of it out to the MD next

time you see him. If they had the DSI diagnosis a long time ago, it

would've made my life easier, for sure!

The other thing is, how does socialize? Does he make eye

contact with you when you are talking to him, even if it's just part

of the time? When interacting with him, is he actually engaged in the

conversation? (Yes, even if he has trouble speaking, you can tell if

he's engaged in the conversation, even if his part is not verbal.).

One of my close friends has a cousin who was recently diagnosed with

AS-- AT AGE 16. For all these years, they thought he had

psychological problems, and never thought of it as a neurological

one. She said that he was smart and did fairly well in school, but

often wanted to avoid people like the plague, even if he knew them

well, and while he was generally " normal " otherwise, he was just

always so disengaged with other people, even if he interacted with

them. Once they got this diagnosis this year, it all clicked much

better on how to interact with him to get better responses from him.

Once they changed their tact, he was a happier guy, and has been

doing much better. But imagine going all these years without knowing

that you child had AS until they were a teenager?

While my son Drew didn't always make eye contact even as a tiny baby,

which was our big red flag that maybe he did have some form of

autism, he does make eye contact when he chooses, and when you have

his attention, you truly have it, and when he interacts with you, you

know you've engaged him fully. This is why, I was told by Drew's

developmental pediatrician, that it was definitely DSI and not AS,

because she was able to engage him in an interaction, and he was

attentive when she was talking to him. Believe me, that was

something I really wanted to be sure of. She told me, " He DEFINITELY

DOESN'T have autism or anything close to it. It's definitely the DSI

that's causing him to not always make eye contact. He's just big

time distracted or caught up in whatever he's doing to pay attention

sometimes. " .

Anyway, my long drawn out point is that it's best for that person in

your other group to get it formally checked out, especially by

someone who is familiar with autism AND with DSI (since it's still a

fairly new diagnosis). Also have that person check out the " Out of

Sync Child " book by Carol Stock Kranowitz or check out the DSI

websites as well. Maybe her child does have AS, maybe not, but the

more research she does, the more she'll feel confident about the MD's

diagnosis as well. You don't want to treat a child for something

they don't have, after all.

Good luck!

le (SAHM to Drew, 2.8 yrs, apraxia, DSI, and hypotonia)

> A mom from another group noted that my son has many symptoms of

> Asperger Syndrome. I have been reading JUST A LITTLE on it and the

> websites say that AS children DON'T have a delay in speech.

> entered EI at 23 months with a 50% speech delay & was Dx with

Apraxic.

> So mom's with children Dx with AS. What do you think is AS

something

> I should look into more?

> Autism has not been ruled out, but I was told by his Developmental

> Ped that he falls into the " border Line " area. The Dev. Ped.

doesn't

> like to Dx Autism w/o being sure.

> Another Dr. gave the label of ADD, but I don't think that

> seems right. I think what the Dr. sees as ADD is really symptoms

of

> 's DSI.

> Thanks

> Heidi- SAHM to 8, 5 (Apraxic, DSI, Word finding

> difficults & questionable ADD dx) (VUR, Torticollis,

> Plagiocephaly, Late talker no Dx yet)

[Guest guest]

Heidi,

It is the norm that children diagnosed with Asperger's will NOT have

a language delay and are actually accelerrated in their language.

However, that is not always the case. I have heard of several

families whose children have both AS and speech delays. The upside

is that most children with AS are very intelligent but just " quirky "

as you might already know.

I find it so difficult to put my child in any one category at such a

young age (he will be 3 in 2 weeks). You might find, as gets

older, that he loses some behaviors as he gains language/maturity.

Take care,

Pam

> A mom from another group noted that my son has many symptoms of

> Asperger Syndrome. I have been reading JUST A LITTLE on it and

the

> websites say that AS children DON'T have a delay in speech.

> entered EI at 23 months with a 50% speech delay & was Dx with

Apraxic.

> So mom's with children Dx with AS. What do you think is AS

something

> I should look into more?

> Autism has not been ruled out, but I was told by his Developmental

> Ped that he falls into the " border Line " area. The Dev. Ped.

doesn't

> like to Dx Autism w/o being sure.

> Another Dr. gave the label of ADD, but I don't think that

> seems right. I think what the Dr. sees as ADD is really symptoms

of

> 's DSI.

> Thanks

> Heidi- SAHM to 8, 5 (Apraxic, DSI, Word finding

> difficults & questionable ADD dx) (VUR, Torticollis,

> Plagiocephaly, Late talker no Dx yet)

[Guest guest]

le,

Hi, by the way almost named my DD le.

definitely has DSI. I found out about DSI 3-1/2 years ago

when was 2 years old. He wasn't comforted by being held as a

infant, at the time I just thought he had too much mommy time because

I breastfed. He ran around naked all the time. When he did finally

start saying words it way hurt. His shoes hurt him, his car seat

hurt him, and his socks hurt him. He freaked when you brushed his

hair and teeth. As a toddler he stuffed his mouth so full of food he

would gag. He didn't like women so much, except me; I think it was

because women like to cress. Men are ruff and tough. He cried when

the sun was in his eyes. He doesn't like loud noise (this one isn't

as bad anymore). He has a great sense of smell.

Had problems regulating his body temperature. He is easily

frustrated. He becomes overwhelmed in groups of people, even around

family. Before I found out about DSI I thought as a difficult

child. Now I know what is going on. The odd thing is and I

always could touch. After I read about DSI, I know that I have it

too. Knowing about DSI has helped my marriage. I used to think my

husband was being mean when he would lightly touch me. I couldn't

understand why he would do that to me. My DH thought I was rejecting

him. Now I know other people like cresses and he was being loving.

He now knows that he can't touch me in those ways and if I tell him

to stop it is just because it `grosses' me out, but I still love

him. Deep touch is needed for and me to feel comfortable. I

can't stand `white-noise' but don't know if this is an issue for

. wasn't Dx as DSI until this year. I asked the

school to test him but the OT said because could touch messy

stuff he didn't have it. I didn't believe the OT. I felt I was more

of an expert than she was, after all, I was the one living it every

day.

does make some eye contact but does at times avoid it. He is

usually described as " off " , " odd " or " funny " . Not funny in a

laughing way. In fact his sense of humor it not normal. He doesn't

know when to laugh and when he does laugh it is almost fake and over

the top. Since humor is based on life, I think 's life

experiences haven't given him the back round of what might be

consider " normal " thus is humor isn't normal.

I have a very dry sense of humor and think many things my DH laughs

as it extremely childish.

has a great OT who has worked with DSI children for years. I

have the Out of Sync Child & Out of Sync Child has fun. I have a

personal trampoline set up in my living room for and to

use. I am going to get some fabric to hang from the rafters in the

basement for to swing in.

ADHD does run in the family, my sister had it, not that it was Dx 30

year ago. I have two nephews with ADHD. They do that the

hyperactivity part. is nothing like them. If I didn't know

about DSI I would think that I had Adult DSI. It is hard for the

brain to do a task, when they whole time I am trying to shut out the

hum of the lights, or the feeling of the air and clothes on my skin.

My brain is forced to multi-task in ways that others have never

needed to do. I worry more about , men just can't multi-task

the way women do. I wonder how much hard life with be for him.

Thanks,

Heidi – SAHM to 8, 5 (Apraxic, DSI, Word finding

difficults & questionable ADD dx) (VUR, Torticollis,

Plagiocephaly, Late talker no Dx yet)

> Heidi--

>

> I don't know much about AS either, but before my son Drew was

> diagnosed with DSI, I kind of wondered whether he had that or was

on

> the spectrum of autism, or even if it was early signs of AD/HD as

> well. I looked a little at some websites too, and I thought that

> Drew did have some of the same symptoms and worried. Once he was

> diagnosed by an OT with DSI, which was confirmed by the same

> developmental pediatrician that diagnosed Drew's apraxia, it was a

> great relief! A LOT of the symptoms/signs of DSI DO overlap with

> some of the AS and AD/HD symptoms, so it's easy to see why it can

be

> misleading unless an expert checks them out.

>

> I can tell you that the more I've learned about DSI, I've realized

> that I have it too, had it as a child, however you want to look at

> it. But of course, they didn't have this diagnosis 30+ years ago,

> and it turns out that fortunately, though just learning on my own

and

> some of the methods my mother used with me unknowingly were the

> things that I needed to cope as I got older. When I described to

her

> what DSI was all about just a couple of weeks ago, it was if it was

a

> revelation to her. She had been saying for 35 years that something

> was wrong with me (always something nice to hear from your mother,

> even as an adult--NOT),but that better explained my behaviors as a

> child, as the MDs didn't want to label me as AD/HD as I could sit

for

> a long time and read books, etc. But I was EASILY distracted

(still

> am). This fit me to a T.

>

> Maybe do a little extra research on DSI as well as the other

> conditions. You will see some overlap, but if you truly think it's

> DSI rather than AD/HD, you can point some of it out to the MD next

> time you see him. If they had the DSI diagnosis a long time ago,

it

> would've made my life easier, for sure!

>

> The other thing is, how does socialize? Does he make eye

> contact with you when you are talking to him, even if it's just

part

> of the time? When interacting with him, is he actually engaged in

the

> conversation? (Yes, even if he has trouble speaking, you can tell

if

> he's engaged in the conversation, even if his part is not

verbal.).

> One of my close friends has a cousin who was recently diagnosed

with

> AS-- AT AGE 16. For all these years, they thought he had

> psychological problems, and never thought of it as a neurological

> one. She said that he was smart and did fairly well in school, but

> often wanted to avoid people like the plague, even if he knew them

> well, and while he was generally " normal " otherwise, he was just

> always so disengaged with other people, even if he interacted with

> them. Once they got this diagnosis this year, it all clicked much

> better on how to interact with him to get better responses from

him.

> Once they changed their tact, he was a happier guy, and has been

> doing much better. But imagine going all these years without

knowing

> that you child had AS until they were a teenager?

>

> While my son Drew didn't always make eye contact even as a tiny

baby,

> which was our big red flag that maybe he did have some form of

> autism, he does make eye contact when he chooses, and when you have

> his attention, you truly have it, and when he interacts with you,

you

> know you've engaged him fully. This is why, I was told by Drew's

> developmental pediatrician, that it was definitely DSI and not AS,

> because she was able to engage him in an interaction, and he was

> attentive when she was talking to him. Believe me, that was

> something I really wanted to be sure of. She told me, " He

DEFINITELY

> DOESN'T have autism or anything close to it. It's definitely the

DSI

> that's causing him to not always make eye contact. He's just big

> time distracted or caught up in whatever he's doing to pay

attention

> sometimes. " .

>

> Anyway, my long drawn out point is that it's best for that person

in

> your other group to get it formally checked out, especially by

> someone who is familiar with autism AND with DSI (since it's still

a

> fairly new diagnosis). Also have that person check out the " Out of

> Sync Child " book by Carol Stock Kranowitz or check out the DSI

> websites as well. Maybe her child does have AS, maybe not, but the

> more research she does, the more she'll feel confident about the

MD's

> diagnosis as well. You don't want to treat a child for something

> they don't have, after all.

>

> Good luck!

>

> le (SAHM to Drew, 2.8 yrs, apraxia, DSI, and hypotonia)

[Guest guest]

Thanks Pam,

I too find it hard to just put in one category.

Luckily I have been hearing these scary words for a few years. It at

one time freaked me out, but not anymore. is no matter

what. I now look at it as a Dx that give children the opportunity

for Treatment.

Take Care,

Heidi

> Heidi,

>

> It is the norm that children diagnosed with Asperger's will NOT

have

> a language delay and are actually accelerrated in their language.

> However, that is not always the case. I have heard of several

> families whose children have both AS and speech delays. The

upside

> is that most children with AS are very intelligent but

just " quirky "

> as you might already know.

>

> I find it so difficult to put my child in any one category at such

a

> young age (he will be 3 in 2 weeks). You might find, as

gets

> older, that he loses some behaviors as he gains language/maturity.

>

> Take care,

>

> Pam

>