Re: Need advice - a bit long

[Guest guest]

>

> In Jacquie's earlier posts about and Ben she mentioned whether or not

to tell Ben's parents and 's autism. Please don't take this the wrong

way but I just need to know if it is difficult to tell with some kids.

Yes. Definitely. Not hard with Mr. Textbook Definition of Autism Putter

though. You might be surprised by Enrique if you got him when he was on

social mode.

Of the kids I know I can usually tell through the lack of eye contact and

the aloofness etc. I know eye contact is not the be all and end all because

has excellent eye contact. It is just that it is so hard to explain

this whole ASD thing to people because I feel they don't believe me.

I think the whole spectrum thing is confusing for many people. Putter's

psychologist says that it takes YEARS to " get it. " You can't just see one

or two or even ten or twenty people with autism, in her opinion. She says

she is still learning. What I see from living with two and, once upon a

time, three people with autism is that there is just a certain way of

thinking and looking at the world that you start to recognize, even though

the outer appearance of that certain way of thinking may have some different

guises. When the noise is great for instance, Putter covers his ear and

hums; Lou and Enrique lash out at someone. And there are about five

trillion (that is a loose estimate, you realize) signs of autism and no

child does all of them. You can easily prove that your child does not have

autism at all by collecting a nice list of all the autistic things that your

child does not do, most of us did this when we were first faced with the

possibility of autism (Putter does not flap! Putter does not spin! Putter

is affectionate! therefore...he still has autism, and despite lacking those

well-known manifestations of autism, he still fits every single line of the

DSM-IV definition of autism which wisely avoids too much detail.

>

> I know many of you have said that your kids are quite social with family

and affectionate and cuddly. Also that some have quite a large vocabulary.

' vocab seems to be increasing, although his words are very direct

or it seems he just labels things most of the time. His singing is taking

off. He can sing better than he can talk to someone. I feel his

comprehension is low. It is hard for me to ask him to get things, they can

be right in front of him and he still does not get it. Except for the

basic's ball, bottle etc.

Well, yes, that sounds very autistic indeed. Auditory processing is most

likely the problem (it is with Putter; his receptive language is less than

it should be because he does not understand what is said to him. However,

his understanding of language is not as poor as it appears because he does

understand written messages).

>

> I guess I am still very confused even though we have the dx. I am not in

denial as I know there is something different about him. I just HATE this

uncertainty.

Yes, well, do you feel in your gut that the dx is correct? If you do not,

then perhaps it isn't correct. But nothing you have written sounds as the

dx is wrong; just that he doesn't look like other kids you know with autism?

Or am I misunderstanding you?

>

> I again want to stress that I don't want to offend anyone as I just want

to know what I am seeing and feeling can be normal.

>

Not sure why this would offend. I think that what you are seeing sounds

pretty normal to me for some varieties of autism.

Salli

[Guest guest]

Jen -

My advice to you right now is not to think of as a " dx " . Most

people do not understand Autism, and I find that when people ask me what it

is, I have a hard time explaining it...because if I try, a lot of people

will say... " oh, all kids have social problems.. " or whatever. Nobody really

" gets " it unless they've lived with it.

If you want to tell people, I suggest a card that explains Autism. Quite a

few members here have posted such things and you can tweak it for your own

circumstances.

is VERY young. You have a long road ahead. Don't think about it

TOO hard or you will drive yourself nuts. Try to work with his individual

issues instead of trying to " fix his Autism " .

You really won't NEED the Autism label until school and services. He is

first and foremost your SON, and you will do what's best for him.

Are you confused that he may not be Autistic? Autism and it's symptoms run

far and wide, and that's why I encourage you to work with on

specific issues and not try to " treat " the Autism.

I hope that makes sense.

Penny

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want

to offend anyone or UPSET anyone. So please let me start by saying that I am

asking because I am at a VERY confused stage with and need your

help in understanding what is going on. I understand all kids are different

and they will all display different things at different times. I am just so

damn confused I hate it.

[Guest guest]

Jen -

My advice to you right now is not to think of as a " dx " . Most

people do not understand Autism, and I find that when people ask me what it

is, I have a hard time explaining it...because if I try, a lot of people

will say... " oh, all kids have social problems.. " or whatever. Nobody really

" gets " it unless they've lived with it.

If you want to tell people, I suggest a card that explains Autism. Quite a

few members here have posted such things and you can tweak it for your own

circumstances.

is VERY young. You have a long road ahead. Don't think about it

TOO hard or you will drive yourself nuts. Try to work with his individual

issues instead of trying to " fix his Autism " .

You really won't NEED the Autism label until school and services. He is

first and foremost your SON, and you will do what's best for him.

Are you confused that he may not be Autistic? Autism and it's symptoms run

far and wide, and that's why I encourage you to work with on

specific issues and not try to " treat " the Autism.

I hope that makes sense.

Penny

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want

to offend anyone or UPSET anyone. So please let me start by saying that I am

asking because I am at a VERY confused stage with and need your

help in understanding what is going on. I understand all kids are different

and they will all display different things at different times. I am just so

damn confused I hate it.

[Guest guest]

Jen -

My advice to you right now is not to think of as a " dx " . Most

people do not understand Autism, and I find that when people ask me what it

is, I have a hard time explaining it...because if I try, a lot of people

will say... " oh, all kids have social problems.. " or whatever. Nobody really

" gets " it unless they've lived with it.

If you want to tell people, I suggest a card that explains Autism. Quite a

few members here have posted such things and you can tweak it for your own

circumstances.

is VERY young. You have a long road ahead. Don't think about it

TOO hard or you will drive yourself nuts. Try to work with his individual

issues instead of trying to " fix his Autism " .

You really won't NEED the Autism label until school and services. He is

first and foremost your SON, and you will do what's best for him.

Are you confused that he may not be Autistic? Autism and it's symptoms run

far and wide, and that's why I encourage you to work with on

specific issues and not try to " treat " the Autism.

I hope that makes sense.

Penny

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want

to offend anyone or UPSET anyone. So please let me start by saying that I am

asking because I am at a VERY confused stage with and need your

help in understanding what is going on. I understand all kids are different

and they will all display different things at different times. I am just so

damn confused I hate it.

[Guest guest]

>>>>>>>

Adults meeting have no idea he is autistic until I tell them. Then

they say things like, " I never would have thought... " or, " are you sure? "

(Just love that one)

They know there's something *different* about him, though. He certainly

doesn't present as straight NT. What someone meeting for the first

time sees is a huge child with the speech of about a four-year-old (he's 6

1/2), who smiles all the time, will hug anyone and everyone, talks a lot and

about things you either can't make out, or you're just not interested. He

says all the wrong things, with no consideration to standard conversational

practice - for example they'll say 'how are you, ? " and he'll say " I

played Tony Hawk skateboarder 3 on Sunday! And my cat's name is Zot! And

my other cat is Phil! His birthday is January 2, 1992! My mom is 32 and

her name is Jacquelyn. "

So there is *always* an awareness that there is something different about my

kid, but no adult has ever failed to be stunned when I say autism.

Jacquie

<<<<<<<<<

Yes. Exactly.

Yesterday Jacqui wanted to go outside and play. So I took her outside,

(because she WON'T go outside by herself).

She was " playing " with some neighborhood girls, and one of the girls started

talking about the movie " Home Alone " ...Jacqui took something out of that and

started saying something like 'I have blah blah blah'. The other girl said

" No, I'm talking about the movie " . So while Jacqui TRIES to contribute to

the conversation, she's usually muted because she's so out of context.

Another example was when one little girl was being silly and saying " Call me

Brittany Spears blah blah blah " ...Jacqui comes back with " There is a

in MY class!! " . One of the adults picked up on it and said " Really?

Is she nice?? Can she do magic like on TV? " Jacqui just responded

with something we couldn't understand and just went on to something else.

So, I have to agree totally with Jacquie's post....totally.

Penny

[Guest guest]

>>>>>>>

Adults meeting have no idea he is autistic until I tell them. Then

they say things like, " I never would have thought... " or, " are you sure? "

(Just love that one)

They know there's something *different* about him, though. He certainly

doesn't present as straight NT. What someone meeting for the first

time sees is a huge child with the speech of about a four-year-old (he's 6

1/2), who smiles all the time, will hug anyone and everyone, talks a lot and

about things you either can't make out, or you're just not interested. He

says all the wrong things, with no consideration to standard conversational

practice - for example they'll say 'how are you, ? " and he'll say " I

played Tony Hawk skateboarder 3 on Sunday! And my cat's name is Zot! And

my other cat is Phil! His birthday is January 2, 1992! My mom is 32 and

her name is Jacquelyn. "

So there is *always* an awareness that there is something different about my

kid, but no adult has ever failed to be stunned when I say autism.

Jacquie

<<<<<<<<<

Yes. Exactly.

Yesterday Jacqui wanted to go outside and play. So I took her outside,

(because she WON'T go outside by herself).

She was " playing " with some neighborhood girls, and one of the girls started

talking about the movie " Home Alone " ...Jacqui took something out of that and

started saying something like 'I have blah blah blah'. The other girl said

" No, I'm talking about the movie " . So while Jacqui TRIES to contribute to

the conversation, she's usually muted because she's so out of context.

Another example was when one little girl was being silly and saying " Call me

Brittany Spears blah blah blah " ...Jacqui comes back with " There is a

in MY class!! " . One of the adults picked up on it and said " Really?

Is she nice?? Can she do magic like on TV? " Jacqui just responded

with something we couldn't understand and just went on to something else.

So, I have to agree totally with Jacquie's post....totally.

Penny

[Guest guest]

>>>>>>>

Adults meeting have no idea he is autistic until I tell them. Then

they say things like, " I never would have thought... " or, " are you sure? "

(Just love that one)

They know there's something *different* about him, though. He certainly

doesn't present as straight NT. What someone meeting for the first

time sees is a huge child with the speech of about a four-year-old (he's 6

1/2), who smiles all the time, will hug anyone and everyone, talks a lot and

about things you either can't make out, or you're just not interested. He

says all the wrong things, with no consideration to standard conversational

practice - for example they'll say 'how are you, ? " and he'll say " I

played Tony Hawk skateboarder 3 on Sunday! And my cat's name is Zot! And

my other cat is Phil! His birthday is January 2, 1992! My mom is 32 and

her name is Jacquelyn. "

So there is *always* an awareness that there is something different about my

kid, but no adult has ever failed to be stunned when I say autism.

Jacquie

<<<<<<<<<

Yes. Exactly.

Yesterday Jacqui wanted to go outside and play. So I took her outside,

(because she WON'T go outside by herself).

She was " playing " with some neighborhood girls, and one of the girls started

talking about the movie " Home Alone " ...Jacqui took something out of that and

started saying something like 'I have blah blah blah'. The other girl said

" No, I'm talking about the movie " . So while Jacqui TRIES to contribute to

the conversation, she's usually muted because she's so out of context.

Another example was when one little girl was being silly and saying " Call me

Brittany Spears blah blah blah " ...Jacqui comes back with " There is a

in MY class!! " . One of the adults picked up on it and said " Really?

Is she nice?? Can she do magic like on TV? " Jacqui just responded

with something we couldn't understand and just went on to something else.

So, I have to agree totally with Jacquie's post....totally.

Penny

[Guest guest]

> >>>>>>>

> Adults meeting have no idea he is autistic until I tell them.

Then

> they say things like, " I never would have thought... " or, " are you

sure? "

> (Just love that one)

>

> They know there's something *different* about him, though. He

certainly

> doesn't present as straight NT. What someone meeting for the

first

> time sees is a huge child with the speech of about a four-year-old

(he's 6

> 1/2), who smiles all the time, will hug anyone and everyone, talks

a lot and

> about things you either can't make out, or you're just not

interested. He

> says all the wrong things, with no consideration to standard

conversational

> practice - for example they'll say 'how are you, ? " and he'll

say " I

> played Tony Hawk skateboarder 3 on Sunday! And my cat's name is

Zot! And

> my other cat is Phil! His birthday is January 2, 1992! My mom is

32 and

> her name is Jacquelyn. "

>

> So there is *always* an awareness that there is something different

about my

> kid, but no adult has ever failed to be stunned when I say autism.

>

> Jacquie

> <<<<<<<<<

>

> Yes. Exactly.

> Yesterday Jacqui wanted to go outside and play. So I took her

outside,

> (because she WON'T go outside by herself).

> She was " playing " with some neighborhood girls, and one of the

girls started

> talking about the movie " Home Alone " ...Jacqui took something out of

that and

> started saying something like 'I have blah blah blah'. The other

girl said

> " No, I'm talking about the movie " . So while Jacqui TRIES to

contribute to

> the conversation, she's usually muted because she's so out of

context.

>

> Another example was when one little girl was being silly and

saying " Call me

> Brittany Spears blah blah blah " ...Jacqui comes back

with " There is a

> in MY class!! " . One of the adults picked up on it and

said " Really?

> Is she nice?? Can she do magic like on TV? " Jacqui just

responded

> with something we couldn't understand and just went on to something

else.

>

> So, I have to agree totally with Jacquie's post....totally.

>

> Penny

>>> Hi i always have this same proublem i still havent figured out

how to handel this my parents still tell me my son is just not

trained well,,, it simply stinks. i just keep reminging them he has

Aspergers,,,I some times ask them and i wonder where he got it from,,

Havent we had this conversation before? It leaves them with no

reply, i find myself repeting my self to joseph alsoI add to my

parents hhhuuummm Lucinda

[Guest guest]

> >>>>>>>

> Adults meeting have no idea he is autistic until I tell them.

Then

> they say things like, " I never would have thought... " or, " are you

sure? "

> (Just love that one)

>

> They know there's something *different* about him, though. He

certainly

> doesn't present as straight NT. What someone meeting for the

first

> time sees is a huge child with the speech of about a four-year-old

(he's 6

> 1/2), who smiles all the time, will hug anyone and everyone, talks

a lot and

> about things you either can't make out, or you're just not

interested. He

> says all the wrong things, with no consideration to standard

conversational

> practice - for example they'll say 'how are you, ? " and he'll

say " I

> played Tony Hawk skateboarder 3 on Sunday! And my cat's name is

Zot! And

> my other cat is Phil! His birthday is January 2, 1992! My mom is

32 and

> her name is Jacquelyn. "

>

> So there is *always* an awareness that there is something different

about my

> kid, but no adult has ever failed to be stunned when I say autism.

>

> Jacquie

> <<<<<<<<<

>

> Yes. Exactly.

> Yesterday Jacqui wanted to go outside and play. So I took her

outside,

> (because she WON'T go outside by herself).

> She was " playing " with some neighborhood girls, and one of the

girls started

> talking about the movie " Home Alone " ...Jacqui took something out of

that and

> started saying something like 'I have blah blah blah'. The other

girl said

> " No, I'm talking about the movie " . So while Jacqui TRIES to

contribute to

> the conversation, she's usually muted because she's so out of

context.

>

> Another example was when one little girl was being silly and

saying " Call me

> Brittany Spears blah blah blah " ...Jacqui comes back

with " There is a

> in MY class!! " . One of the adults picked up on it and

said " Really?

> Is she nice?? Can she do magic like on TV? " Jacqui just

responded

> with something we couldn't understand and just went on to something

else.

>

> So, I have to agree totally with Jacquie's post....totally.

>

> Penny

>>> Hi i always have this same proublem i still havent figured out

how to handel this my parents still tell me my son is just not

trained well,,, it simply stinks. i just keep reminging them he has

Aspergers,,,I some times ask them and i wonder where he got it from,,

Havent we had this conversation before? It leaves them with no

reply, i find myself repeting my self to joseph alsoI add to my

parents hhhuuummm Lucinda

[Guest guest]

> >>>>>>>

> Adults meeting have no idea he is autistic until I tell them.

Then

> they say things like, " I never would have thought... " or, " are you

sure? "

> (Just love that one)

>

> They know there's something *different* about him, though. He

certainly

> doesn't present as straight NT. What someone meeting for the

first

> time sees is a huge child with the speech of about a four-year-old

(he's 6

> 1/2), who smiles all the time, will hug anyone and everyone, talks

a lot and

> about things you either can't make out, or you're just not

interested. He

> says all the wrong things, with no consideration to standard

conversational

> practice - for example they'll say 'how are you, ? " and he'll

say " I

> played Tony Hawk skateboarder 3 on Sunday! And my cat's name is

Zot! And

> my other cat is Phil! His birthday is January 2, 1992! My mom is

32 and

> her name is Jacquelyn. "

>

> So there is *always* an awareness that there is something different

about my

> kid, but no adult has ever failed to be stunned when I say autism.

>

> Jacquie

> <<<<<<<<<

>

> Yes. Exactly.

> Yesterday Jacqui wanted to go outside and play. So I took her

outside,

> (because she WON'T go outside by herself).

> She was " playing " with some neighborhood girls, and one of the

girls started

> talking about the movie " Home Alone " ...Jacqui took something out of

that and

> started saying something like 'I have blah blah blah'. The other

girl said

> " No, I'm talking about the movie " . So while Jacqui TRIES to

contribute to

> the conversation, she's usually muted because she's so out of

context.

>

> Another example was when one little girl was being silly and

saying " Call me

> Brittany Spears blah blah blah " ...Jacqui comes back

with " There is a

> in MY class!! " . One of the adults picked up on it and

said " Really?

> Is she nice?? Can she do magic like on TV? " Jacqui just

responded

> with something we couldn't understand and just went on to something

else.

>

> So, I have to agree totally with Jacquie's post....totally.

>

> Penny

>>> Hi i always have this same proublem i still havent figured out

how to handel this my parents still tell me my son is just not

trained well,,, it simply stinks. i just keep reminging them he has

Aspergers,,,I some times ask them and i wonder where he got it from,,

Havent we had this conversation before? It leaves them with no

reply, i find myself repeting my self to joseph alsoI add to my

parents hhhuuummm Lucinda

[Guest guest]

> So there is *always* an awareness that there is something different

about my kid, but no adult has ever failed to be stunned when I say

autism.

>

I think it's because of the way the media portrays autism. They show

the severely affected individuals but rarely show the high

functioning ones. Most people equate autism with Rainman. Since many

people are more familiar with diabetes than autism I compare the 2

when I'm trying to explain it. I tell them that just as there are

diabetics that can control their condition with diet, there are

autistics that can function in society without a lot of outside help.

Then there are those diabetics that need their insulin daily or they

risk death. While austim isn't fatal there are degrees of severity

just like with diabetes.

Sometimes it helps them understand, sometimes it doesn't. I never

take the time to try to explain unless they manage to show a bit of

interest. I hate it when their eyes glaze over and I've said 5 words

or less.

Tina

[Guest guest]

> So there is *always* an awareness that there is something different

about my kid, but no adult has ever failed to be stunned when I say

autism.

>

I think it's because of the way the media portrays autism. They show

the severely affected individuals but rarely show the high

functioning ones. Most people equate autism with Rainman. Since many

people are more familiar with diabetes than autism I compare the 2

when I'm trying to explain it. I tell them that just as there are

diabetics that can control their condition with diet, there are

autistics that can function in society without a lot of outside help.

Then there are those diabetics that need their insulin daily or they

risk death. While austim isn't fatal there are degrees of severity

just like with diabetes.

Sometimes it helps them understand, sometimes it doesn't. I never

take the time to try to explain unless they manage to show a bit of

interest. I hate it when their eyes glaze over and I've said 5 words

or less.

Tina

[Guest guest]

> So there is *always* an awareness that there is something different

about my kid, but no adult has ever failed to be stunned when I say

autism.

>

I think it's because of the way the media portrays autism. They show

the severely affected individuals but rarely show the high

functioning ones. Most people equate autism with Rainman. Since many

people are more familiar with diabetes than autism I compare the 2

when I'm trying to explain it. I tell them that just as there are

diabetics that can control their condition with diet, there are

autistics that can function in society without a lot of outside help.

Then there are those diabetics that need their insulin daily or they

risk death. While austim isn't fatal there are degrees of severity

just like with diabetes.

Sometimes it helps them understand, sometimes it doesn't. I never

take the time to try to explain unless they manage to show a bit of

interest. I hate it when their eyes glaze over and I've said 5 words

or less.

Tina

[Guest guest]

> They show

> the severely affected individuals but rarely show the high

> functioning ones. Most people equate autism with Rainman.>

You know, it's funny...I always think that the media portrays kids

with " higher functioning " autism...I would be thrilled if was

able to function as well as Rainman, or the kid in " Gilbert Grape " .

I guess it's all in perspective...most folks don't even know kids

like mine exist.

Raena

[Guest guest]

> They show

> the severely affected individuals but rarely show the high

> functioning ones. Most people equate autism with Rainman.>

You know, it's funny...I always think that the media portrays kids

with " higher functioning " autism...I would be thrilled if was

able to function as well as Rainman, or the kid in " Gilbert Grape " .

I guess it's all in perspective...most folks don't even know kids

like mine exist.

Raena

[Guest guest]

> > They show the severely affected individuals but rarely show the

high functioning ones. Most people equate autism with Rainman.>

> >

> You know, it's funny...I always think that the media portrays kids

> with " higher functioning " autism...I would be thrilled if

was able to function as well as Rainman, or the kid in " Gilbert

Grape " .

>

> I guess it's all in perspective...most folks don't even know kids

> like mine exist.

>

Raena,

is still pretty young though isn't he? I'm just thinking that

he has a lot of time still to develop.

You're right, Rainman was more advanced in some ways, definitely the

savant qualities. I think that adds confusion for a lot of people

too. and do not have savant abilities. is quite far

behind. Her social skills are at about a 4 yr. old level and she's

11. Even then most 4 yr. olds read faces better than . It's such

a wide spectrum it's impossible to pin it down in one or two

examples.

I watched a show about autism that really showcased Temple Grandin's

deficits and abilities. She can look at the camera and speak quite

intelligently but in a group of people she walks away before a

conversation is over because she doesn't pick up on those social

cues. If someone who had no clue what autism was watched the speech,

they wouldn't realize there was anything wrong with her. But if they

tried to have a private conversation, they would probably think she

was rude or had a problem.

Tina

*who is rambling and needs more sleep today*

[Guest guest]

> > They show the severely affected individuals but rarely show the

high functioning ones. Most people equate autism with Rainman.>

> >

> You know, it's funny...I always think that the media portrays kids

> with " higher functioning " autism...I would be thrilled if

was able to function as well as Rainman, or the kid in " Gilbert

Grape " .

>

> I guess it's all in perspective...most folks don't even know kids

> like mine exist.

>

Raena,

is still pretty young though isn't he? I'm just thinking that

he has a lot of time still to develop.

You're right, Rainman was more advanced in some ways, definitely the

savant qualities. I think that adds confusion for a lot of people

too. and do not have savant abilities. is quite far

behind. Her social skills are at about a 4 yr. old level and she's

11. Even then most 4 yr. olds read faces better than . It's such

a wide spectrum it's impossible to pin it down in one or two

examples.

I watched a show about autism that really showcased Temple Grandin's

deficits and abilities. She can look at the camera and speak quite

intelligently but in a group of people she walks away before a

conversation is over because she doesn't pick up on those social

cues. If someone who had no clue what autism was watched the speech,

they wouldn't realize there was anything wrong with her. But if they

tried to have a private conversation, they would probably think she

was rude or had a problem.

Tina

*who is rambling and needs more sleep today*

[Guest guest]

Jen,

I don't know if I have ever introduced myself to you. I am Jacquie H. Married

to Jeff and we have 3 kids. Greggory 7 yrs and High Functioning autistic. Alec

is 5 yrs and has austim, bipolar and adhd and mopst likely ODD. Yessenia will be

9 months this week. She is a bit of a mystery but oh well. Anyway, Greggory

and Alec are both autistic and so very different. Alec seemed less autistic as a

baby and small toddler than Greggory to be honest. Now Greggory has been going

to regular school since he was 4 yrs old and with no supports. He is doing well

and has friends and plays sports and most people have no idea he has anything

wrong with him and autism never comes to mind. He has fairly good eye contact

and he jabbers(too much, a bit of his asd tendencies there) and he is very

social. He does have a bit of trouble trying to figure out what he is expected

to act like socially though. You would really have to see him to understand. As

for Alec he is obviously something. Most people aren't sure what. But he doesn't

talk and eye contact is off and on(always on his terms) and he giggles

hsterically and cries and screams and falls on the ground and runs away and

bites himself and punches people and the list goes on. I haven't told people

that Greggory has autism unless it comes up in some sort of conversation and I

really don't tell people about Alec. Although I am sure they would figure

something is wrong unless they are dumb enough to think he is just the most

spoiled child on earth.

Jacquie H

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want to

offend anyone or UPSET anyone. So please let me start by saying that I am asking

because I am at a VERY confused stage with and need your help in

understanding what is going on. I understand all kids are different and they

will all display different things at different times. I am just so damn confused

I hate it.

In Jacquie's earlier posts about and Ben she mentioned whether or not to

tell Ben's parents and 's autism. Please don't take this the wrong way but I

just need to know if it is difficult to tell with some kids. Of the kids I know

I can usually tell through the lack of eye contact and the aloofness etc. I know

eye contact is not the be all and end all because has excellent eye

contact. It is just that it is so hard to explain this whole ASD thing to people

because I feel they don't believe me.

I know many of you have said that your kids are quite social with family and

affectionate and cuddly. Also that some have quite a large vocabulary. '

vocab seems to be increasing, although his words are very direct or it seems he

just labels things most of the time. His singing is taking off. He can sing

better than he can talk to someone. I feel his comprehension is low. It is hard

for me to ask him to get things, they can be right in front of him and he still

does not get it. Except for the basic's ball, bottle etc.

I guess I am still very confused even though we have the dx. I am not in

denial as I know there is something different about him. I just HATE this

uncertainty.

I again want to stress that I don't want to offend anyone as I just want to

know what I am seeing and feeling can be normal.

Many Thanks,

Jen

Mum to - NT 5

- ASD 2.4 yrs

[Guest guest]

Jen,

I don't know if I have ever introduced myself to you. I am Jacquie H. Married

to Jeff and we have 3 kids. Greggory 7 yrs and High Functioning autistic. Alec

is 5 yrs and has austim, bipolar and adhd and mopst likely ODD. Yessenia will be

9 months this week. She is a bit of a mystery but oh well. Anyway, Greggory

and Alec are both autistic and so very different. Alec seemed less autistic as a

baby and small toddler than Greggory to be honest. Now Greggory has been going

to regular school since he was 4 yrs old and with no supports. He is doing well

and has friends and plays sports and most people have no idea he has anything

wrong with him and autism never comes to mind. He has fairly good eye contact

and he jabbers(too much, a bit of his asd tendencies there) and he is very

social. He does have a bit of trouble trying to figure out what he is expected

to act like socially though. You would really have to see him to understand. As

for Alec he is obviously something. Most people aren't sure what. But he doesn't

talk and eye contact is off and on(always on his terms) and he giggles

hsterically and cries and screams and falls on the ground and runs away and

bites himself and punches people and the list goes on. I haven't told people

that Greggory has autism unless it comes up in some sort of conversation and I

really don't tell people about Alec. Although I am sure they would figure

something is wrong unless they are dumb enough to think he is just the most

spoiled child on earth.

Jacquie H

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want to

offend anyone or UPSET anyone. So please let me start by saying that I am asking

because I am at a VERY confused stage with and need your help in

understanding what is going on. I understand all kids are different and they

will all display different things at different times. I am just so damn confused

I hate it.

In Jacquie's earlier posts about and Ben she mentioned whether or not to

tell Ben's parents and 's autism. Please don't take this the wrong way but I

just need to know if it is difficult to tell with some kids. Of the kids I know

I can usually tell through the lack of eye contact and the aloofness etc. I know

eye contact is not the be all and end all because has excellent eye

contact. It is just that it is so hard to explain this whole ASD thing to people

because I feel they don't believe me.

I know many of you have said that your kids are quite social with family and

affectionate and cuddly. Also that some have quite a large vocabulary. '

vocab seems to be increasing, although his words are very direct or it seems he

just labels things most of the time. His singing is taking off. He can sing

better than he can talk to someone. I feel his comprehension is low. It is hard

for me to ask him to get things, they can be right in front of him and he still

does not get it. Except for the basic's ball, bottle etc.

I guess I am still very confused even though we have the dx. I am not in

denial as I know there is something different about him. I just HATE this

uncertainty.

I again want to stress that I don't want to offend anyone as I just want to

know what I am seeing and feeling can be normal.

Many Thanks,

Jen

Mum to - NT 5

- ASD 2.4 yrs

[Guest guest]

Jen,

I don't know if I have ever introduced myself to you. I am Jacquie H. Married

to Jeff and we have 3 kids. Greggory 7 yrs and High Functioning autistic. Alec

is 5 yrs and has austim, bipolar and adhd and mopst likely ODD. Yessenia will be

9 months this week. She is a bit of a mystery but oh well. Anyway, Greggory

and Alec are both autistic and so very different. Alec seemed less autistic as a

baby and small toddler than Greggory to be honest. Now Greggory has been going

to regular school since he was 4 yrs old and with no supports. He is doing well

and has friends and plays sports and most people have no idea he has anything

wrong with him and autism never comes to mind. He has fairly good eye contact

and he jabbers(too much, a bit of his asd tendencies there) and he is very

social. He does have a bit of trouble trying to figure out what he is expected

to act like socially though. You would really have to see him to understand. As

for Alec he is obviously something. Most people aren't sure what. But he doesn't

talk and eye contact is off and on(always on his terms) and he giggles

hsterically and cries and screams and falls on the ground and runs away and

bites himself and punches people and the list goes on. I haven't told people

that Greggory has autism unless it comes up in some sort of conversation and I

really don't tell people about Alec. Although I am sure they would figure

something is wrong unless they are dumb enough to think he is just the most

spoiled child on earth.

Jacquie H

Need advice - a bit long

Hi All,

I am going to do my best to explain myself properly here. I, in NO way want to

offend anyone or UPSET anyone. So please let me start by saying that I am asking

because I am at a VERY confused stage with and need your help in

understanding what is going on. I understand all kids are different and they

will all display different things at different times. I am just so damn confused

I hate it.

In Jacquie's earlier posts about and Ben she mentioned whether or not to

tell Ben's parents and 's autism. Please don't take this the wrong way but I

just need to know if it is difficult to tell with some kids. Of the kids I know

I can usually tell through the lack of eye contact and the aloofness etc. I know

eye contact is not the be all and end all because has excellent eye

contact. It is just that it is so hard to explain this whole ASD thing to people

because I feel they don't believe me.

I know many of you have said that your kids are quite social with family and

affectionate and cuddly. Also that some have quite a large vocabulary. '

vocab seems to be increasing, although his words are very direct or it seems he

just labels things most of the time. His singing is taking off. He can sing

better than he can talk to someone. I feel his comprehension is low. It is hard

for me to ask him to get things, they can be right in front of him and he still

does not get it. Except for the basic's ball, bottle etc.

I guess I am still very confused even though we have the dx. I am not in

denial as I know there is something different about him. I just HATE this

uncertainty.

I again want to stress that I don't want to offend anyone as I just want to

know what I am seeing and feeling can be normal.

Many Thanks,

Jen

Mum to - NT 5

- ASD 2.4 yrs

[Guest guest]

> is still pretty young though isn't he? I'm just thinking

> that he has a lot of time still to develop. >

is 9. He is long past all those " windows " that are supposed

to determine what a child will or won't be able to learn. He is also

diagnosed with a rare form of regressive autism; so I probably

shouldn't even be in this conversation. ;-)

> You're right, Rainman was more advanced in some ways, definitely

> the savant qualities. I think that adds confusion for a lot of

> people too. and do not have savant abilities. is

> quite far behind. Her social skills are at about a 4 yr. old level

> and she's 11. Even then most 4 yr. olds read faces better than

> . It's such a wide spectrum it's impossible to pin it down in

> one or two examples. >

I do think that the savant issue is something the media portrays too

heavily when dealing with autism. It's really fairly rare (Sissi

would be the person to discuss this...) It gives people a very odd

picture of autism, and isn't fair to anyone, really. But it plays

well in movies and TV, so that probably won't change.

I think that part of the problem is that a person can be

quite " severely autistic " and still function fairly well...a kid who

is both severe and low functioning is more " odd " than " intriguing " ---

they never show up in shows...and that's okay, because it would be an

invasion of their privacy to show what their lives are really like.

That's why so few people are aware of them.

On the other end of it, you have ASD kids who look fairly " typical " ,

but have significant sensory issues that just make them seem weird or

badly behaved, which probably wouldn't play that well on TV,either.

That is probably just as hard for the parent...most likely harder for

the children. couldn't care less what anyone thinks of

him... (who is not autistic but has significant DSI and

related social ineptness) really struggles to fit in...and that is

just as hard to watch. But he will eventually find a place in the

world... probably never will.

Raena

[Guest guest]

> is still pretty young though isn't he? I'm just thinking

> that he has a lot of time still to develop. >

is 9. He is long past all those " windows " that are supposed

to determine what a child will or won't be able to learn. He is also

diagnosed with a rare form of regressive autism; so I probably

shouldn't even be in this conversation. ;-)

> You're right, Rainman was more advanced in some ways, definitely

> the savant qualities. I think that adds confusion for a lot of

> people too. and do not have savant abilities. is

> quite far behind. Her social skills are at about a 4 yr. old level

> and she's 11. Even then most 4 yr. olds read faces better than

> . It's such a wide spectrum it's impossible to pin it down in

> one or two examples. >

I do think that the savant issue is something the media portrays too

heavily when dealing with autism. It's really fairly rare (Sissi

would be the person to discuss this...) It gives people a very odd

picture of autism, and isn't fair to anyone, really. But it plays

well in movies and TV, so that probably won't change.

I think that part of the problem is that a person can be

quite " severely autistic " and still function fairly well...a kid who

is both severe and low functioning is more " odd " than " intriguing " ---

they never show up in shows...and that's okay, because it would be an

invasion of their privacy to show what their lives are really like.

That's why so few people are aware of them.

On the other end of it, you have ASD kids who look fairly " typical " ,

but have significant sensory issues that just make them seem weird or

badly behaved, which probably wouldn't play that well on TV,either.

That is probably just as hard for the parent...most likely harder for

the children. couldn't care less what anyone thinks of

him... (who is not autistic but has significant DSI and

related social ineptness) really struggles to fit in...and that is

just as hard to watch. But he will eventually find a place in the

world... probably never will.

Raena

[Guest guest]

> I actually have more probalems with people understanding and

accepting Greggory than I do with Alec. Greggory just seems whiney

and annoying and pesty. People don't like that. Alec is way too

obviously affected for someone to be as unsympathetic. And it does

seem that people know more about Alec's autism than Greggory's HF

autism. Just my experience.>

I think that's probably true, Jacquie...HFA is a much

more " invisible " disability. All I was saying is that it always

prickles me a bit when people think that Rainman type characters

are " low functioning " ...it's not as bad as it gets, not by a long

shot (I know you and others on here know that---not trying to offend

anyone). As I said before, I'd give a lot for a chance to see

do that well...it would be almost a miracle.

:-)

Raena

[Guest guest]

I hear ya! Autism really isnt that well understood at all. But

California does seem to be a state that has alot of coverage on

autism in comparission to many other states. I think the children

that get the media expoxure are alot more like Alec than like

greggory and maybe this is why I have had a different experience. But

I relate alot to the movie Rainman with both the boys(more greggory

than Alec). But most children are not like Rainman at all. I remember

how I got into a very big arguement with a very well respected dr(in

the field of autism) that my boys could not be autistic because

neither of them " fit the cookie cutter mold of autism. I could have

killed the man. ugh. How can we expect the average person to know

more about autism than some of the so called professionals?

Jacquie H

> I think that's probably true, Jacquie...HFA is a much

> more " invisible " disability. All I was saying is that it always

> prickles me a bit when people think that Rainman type characters

> are " low functioning " ...it's not as bad as it gets, not by a long

> shot (I know you and others on here know that---not trying to

offend

> anyone). As I said before, I'd give a lot for a chance to see

> do that well...it would be almost a miracle.

>

> :-)

>

> Raena

[Guest guest]

>

> is 9. He is long past all those " windows " that are supposed

> to determine what a child will or won't be able to learn. He is

also diagnosed with a rare form of regressive autism; so I probably

> shouldn't even be in this conversation. ;-)

I remembered that you'd said he'd gotten a lot worse when he was a

toddler but I was thinking he was around 5 or 6 for some reason.

Sorry. My brain is mush today. I think it's all the snot in my head.

Yuck.

> I do think that the savant issue is something the media portrays

too heavily when dealing with autism. It's really fairly rare (Sissi

> would be the person to discuss this...) It gives people a very odd

> picture of autism, and isn't fair to anyone, really. But it plays

> well in movies and TV, so that probably won't change.

It is rare but when I tell people that 's autistic they tend to

ask what her savant abilities are. I try not to look at them like

they have two heads.

> I think that part of the problem is that a person can be

quite " severely autistic " and still function fairly well...a kid who

> is both severe and low functioning is more " odd " than " intriguing " --

-

I think a lot depends on the child's intelligence. is

definitely mentally handicapped. That's become more obvious with

time. She can function well enough when it comes to self-care but

anything outside of home or school really throws her for a loop. She

doesn't adjust well to change at all.

> they never show up in shows...and that's okay, because it would be

an invasion of their privacy to show what their lives are really

like. That's why so few people are aware of them.

>

You're right, they can't give their permission to be portrayed in the

media, but on the other hand, I wish it were possible to show more

people what it's like to live with a child with a severe disability.

I think knowledge is the key to acceptance.

> On the other end of it, you have ASD kids who look

fairly " typical " , but have significant sensory issues that just make

them seem weird or badly behaved, which probably wouldn't play that

well on TV,either.

>

That's a lot harder to explain. They're not a " sympathetic "

character. It's much harder for an outsider to relate and understand

their issues. I learned that first hand with my former sitter. : /

Tina