Re: How do you deal with telling or not telling about DX

[Guest guest]

,

My son Jordan is also 2.5 years old (will be 3 in July). He still

mostly babbles and even when he does say actual words it's so garbled

that even I can barely understand it. His twin sister talks like a

champ, complete sentences and carries on rudimentary conversations.

While I don't walk into a room and say " Attention everyone, Jordan has

autism " , I'm not at all hesitant to tell people. In the case of that

mother (had you known his dx then), I would have said, " He has autism,

so his speech is a bit delayed, he doesn't talk yet " and stressed the

" yet " . You'll be surprised how many people already know someone with

autism ... 1 in 250 children have it, so a great majority of people know

at least someone (friend of a friend, cousin, child, nephew, etc) with

it.

I believe the only way to eliminate the stigma attached to autism is to

educate people. That means being upfront about the disability and then

answering questions to the best of my ability to eliminate the

" mystery " .

Maybe when Jordan gets older, I'll be a bit more hesitant to tell people

so that he doesn't have to fight a label. I don't know. I do know that

I will teach him that while autism is a disability and a challenge for

his lifetime, it is not WHO he is. It is not something to be ashamed

of, no more than someone should be ashamed of having diabetes, or any

number of other lifetime illnesses. It just is, and while he'll have to

work with the disability, his life doesn't have to revolve around it. I

hope that makes some sense. While I have said " Jordan is autistic " , I

actually prefer saying " Jordan has autism " ... semantics but to me it

makes a difference in how I look at it. I personally need to separate

the boy from the diagnosis.

Okay, I've rambled way too much and beat my point to death. I hope this

helps you.

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

[Guest guest]

,

My son Jordan is also 2.5 years old (will be 3 in July). He still

mostly babbles and even when he does say actual words it's so garbled

that even I can barely understand it. His twin sister talks like a

champ, complete sentences and carries on rudimentary conversations.

While I don't walk into a room and say " Attention everyone, Jordan has

autism " , I'm not at all hesitant to tell people. In the case of that

mother (had you known his dx then), I would have said, " He has autism,

so his speech is a bit delayed, he doesn't talk yet " and stressed the

" yet " . You'll be surprised how many people already know someone with

autism ... 1 in 250 children have it, so a great majority of people know

at least someone (friend of a friend, cousin, child, nephew, etc) with

it.

I believe the only way to eliminate the stigma attached to autism is to

educate people. That means being upfront about the disability and then

answering questions to the best of my ability to eliminate the

" mystery " .

Maybe when Jordan gets older, I'll be a bit more hesitant to tell people

so that he doesn't have to fight a label. I don't know. I do know that

I will teach him that while autism is a disability and a challenge for

his lifetime, it is not WHO he is. It is not something to be ashamed

of, no more than someone should be ashamed of having diabetes, or any

number of other lifetime illnesses. It just is, and while he'll have to

work with the disability, his life doesn't have to revolve around it. I

hope that makes some sense. While I have said " Jordan is autistic " , I

actually prefer saying " Jordan has autism " ... semantics but to me it

makes a difference in how I look at it. I personally need to separate

the boy from the diagnosis.

Okay, I've rambled way too much and beat my point to death. I hope this

helps you.

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

[Guest guest]

,

My son Jordan is also 2.5 years old (will be 3 in July). He still

mostly babbles and even when he does say actual words it's so garbled

that even I can barely understand it. His twin sister talks like a

champ, complete sentences and carries on rudimentary conversations.

While I don't walk into a room and say " Attention everyone, Jordan has

autism " , I'm not at all hesitant to tell people. In the case of that

mother (had you known his dx then), I would have said, " He has autism,

so his speech is a bit delayed, he doesn't talk yet " and stressed the

" yet " . You'll be surprised how many people already know someone with

autism ... 1 in 250 children have it, so a great majority of people know

at least someone (friend of a friend, cousin, child, nephew, etc) with

it.

I believe the only way to eliminate the stigma attached to autism is to

educate people. That means being upfront about the disability and then

answering questions to the best of my ability to eliminate the

" mystery " .

Maybe when Jordan gets older, I'll be a bit more hesitant to tell people

so that he doesn't have to fight a label. I don't know. I do know that

I will teach him that while autism is a disability and a challenge for

his lifetime, it is not WHO he is. It is not something to be ashamed

of, no more than someone should be ashamed of having diabetes, or any

number of other lifetime illnesses. It just is, and while he'll have to

work with the disability, his life doesn't have to revolve around it. I

hope that makes some sense. While I have said " Jordan is autistic " , I

actually prefer saying " Jordan has autism " ... semantics but to me it

makes a difference in how I look at it. I personally need to separate

the boy from the diagnosis.

Okay, I've rambled way too much and beat my point to death. I hope this

helps you.

Debbie with twins

- Jordan (ASD) 2.5yo

- (NT) 2.5yo

[Guest guest]

So I said, " he is a bit delayed and doesn't speak yet " and Her reply " oh

don't worry he will, my son talks so much because I talk to him all the

time " !! Ok I just bite my tongue and smiled. (This was before his dx)...I

know she meant well........

Grrr. Actually what I dislike most about her remark is that it sounds as if

she is a superior mom and you just don't talk to your kid enough. LIKE

TALKING TO HIM COULD CURE AUTISM. Give me a break. Sorry, I just hate

those kinds of things.

>

> Oh so before I go off on a ramble about that,

I already rambled for you!

I will get back to my point...Do you tell strangers your child is Autistic,

do you just not say anything? I just don't know. I am not ashamed of my son

however I know the stigma that goes with Autism and I know that many people

will react very strongly to it and perhaps not want their child to play with

mine (like it is catching LOL). Maybe I don't give people enough

credit......

I pretty much have to tell people Putter is autistic. It is quite clear

that something is up with him if you are around him for even a short time.

Oddly enough, people often don't react at all in any way. I have never

known someone to act like Putter shouldn't play with their child though. Of

course, Putter doesn't WANT to play with their child. But I have seen

people try to include him in very kind ways.

Salli

[Guest guest]

So I said, " he is a bit delayed and doesn't speak yet " and Her reply " oh

don't worry he will, my son talks so much because I talk to him all the

time " !! Ok I just bite my tongue and smiled. (This was before his dx)...I

know she meant well........

Grrr. Actually what I dislike most about her remark is that it sounds as if

she is a superior mom and you just don't talk to your kid enough. LIKE

TALKING TO HIM COULD CURE AUTISM. Give me a break. Sorry, I just hate

those kinds of things.

>

> Oh so before I go off on a ramble about that,

I already rambled for you!

I will get back to my point...Do you tell strangers your child is Autistic,

do you just not say anything? I just don't know. I am not ashamed of my son

however I know the stigma that goes with Autism and I know that many people

will react very strongly to it and perhaps not want their child to play with

mine (like it is catching LOL). Maybe I don't give people enough

credit......

I pretty much have to tell people Putter is autistic. It is quite clear

that something is up with him if you are around him for even a short time.

Oddly enough, people often don't react at all in any way. I have never

known someone to act like Putter shouldn't play with their child though. Of

course, Putter doesn't WANT to play with their child. But I have seen

people try to include him in very kind ways.

Salli

[Guest guest]

Personally I tell. I think it's a good teaching opportunity for

those who may not know exactly what autism is. It's amazing how many

people know others with an autism diagnosism and you might find some

comradere. This happened to me recently.

It also lets other people know that you're not a bad mom when your

child's behavior is not as one would expect. A one on one

environment is a whole lot easier to do it in rather than in public.

I hate public places.

[Guest guest]

Personally I tell. I think it's a good teaching opportunity for

those who may not know exactly what autism is. It's amazing how many

people know others with an autism diagnosism and you might find some

comradere. This happened to me recently.

It also lets other people know that you're not a bad mom when your

child's behavior is not as one would expect. A one on one

environment is a whole lot easier to do it in rather than in public.

I hate public places.

[Guest guest]

Personally I tell. I think it's a good teaching opportunity for

those who may not know exactly what autism is. It's amazing how many

people know others with an autism diagnosism and you might find some

comradere. This happened to me recently.

It also lets other people know that you're not a bad mom when your

child's behavior is not as one would expect. A one on one

environment is a whole lot easier to do it in rather than in public.

I hate public places.

[Guest guest]

>>>>>>> I just don't know. I am not ashamed of my son

> however I know the stigma that goes with Autism and I know that

many people

> will react very strongly to it and perhaps not want their child to

play with

> mine (like it is catching LOL). <<<<<<<<

The most common thing I hear is " oh like Rainman " . I've never even

seen that movie but I'm thinking it's about time I do so I know what

people are comparing my son too.

Tina Reese

[Guest guest]

>>>>>>> I just don't know. I am not ashamed of my son

> however I know the stigma that goes with Autism and I know that

many people

> will react very strongly to it and perhaps not want their child to

play with

> mine (like it is catching LOL). <<<<<<<<

The most common thing I hear is " oh like Rainman " . I've never even

seen that movie but I'm thinking it's about time I do so I know what

people are comparing my son too.

Tina Reese

[Guest guest]

>>>>>>> I just don't know. I am not ashamed of my son

> however I know the stigma that goes with Autism and I know that

many people

> will react very strongly to it and perhaps not want their child to

play with

> mine (like it is catching LOL). <<<<<<<<

The most common thing I hear is " oh like Rainman " . I've never even

seen that movie but I'm thinking it's about time I do so I know what

people are comparing my son too.

Tina Reese

[Guest guest]

I say that she has a developmental delay. I will only use the word autism

with people who know what it means. When she was diagnoised and I was in

shell shock I told my friends, my neighbors, my family. There were no

condolence calls, no sympathy, no support. Now all the friends are gone (I

do have new friends though) and the neighbors kids don't come to play. I do

wish that I hadn't said anything.

[Guest guest]

,

I would just continue to tell him to say 'Hi' back. You can tell them he's

autistic if you want to. Or, you can just say that he has trouble speaking

or however you want to phrase it. Just be prepared for the 'oh he'll talk'

crap if you say something like that to them.

Sue

[Guest guest]

> Oh so before I go off on a ramble about that, I will get back to my

point...Do you tell strangers your child is Autistic, do you just not

say anything? I just don't know. I am not ashamed of my son however I

know the stigma that goes with Autism and I know that many people

will react very strongly to it and perhaps not want their child to

play with mine (like it is catching LOL). Maybe I don't give people

enough credit......

>

Some people won't act stupid, others will now matter what you tell

them. If someone asks, I tell them. If they're ticking me off with

stupid comments, I tell them. Otherwise I don't worry about them.

Chances are I won't ever see most of them again anyway and I don't

care what they think.

The only time I ever had a parent pull their kid away from mine was

when I told her was epileptic. She refused to wait in the same

waiting room after that. I told her she was stupid, it wasn't

contageous.

Tina

[Guest guest]

and I have been very lucky...the small town we live in is so

accepting of . It seems like everyone knows someone who is

autistic, and I am always hearing, " Honey, don't worry about him. He's

fine. " 's elementary school has two special ed classes, and the

school responds very strongly to children who laugh at the special needs

kids. In fact, they are required to do volunteer work in the

classrooms--it is very effective, and it changes their attitudes. Down

here, I am more surprised when someone treats badly. I won't tell

you about the woman at the grocery store I almost swung around by her

ponytail.

Maggie

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[Guest guest]

> When she was diagnoised and I was in

> shell shock I told my friends, my neighbors, my family. There were

no condolence calls, no sympathy, no support. Now all the friends

are gone (I do have new friends though) and the neighbors kids don't

come to play. I do wish that I hadn't said anything.

>

(((((hugs))))

I don't think it matters. Some people simply can't cope, even when

it's not their child. By telling them they might have run away a

little quicker but I think they would have left anyway.

wasn't dx'd until she was 6. I lost a LOT of friends before we

ever got the dx so don't beat yourself up over talking about it. Add

's seizures on top of that and my " friends " ran like rats off a

sinking ship. There was no hiding 's dx, he had too many break

through seizures and to be fair, I've had doctors and nurses get

scared when he turned blue from head to toe.

Tina

[Guest guest]

>

> The only time I ever had a parent pull their kid away from mine was

> when I told her was epileptic. She refused to wait in the

same

> waiting room after that. I told her she was stupid, it wasn't

> contageous.

I never could understand why people refuse to be educated and allow

their own stupidity to run amuck. Idiots.

[Guest guest]

You know, we haven't had this either, even when Gabe has had seizures in

public and Matt and I have been discussing when his last one was and how

long this one lasted and etc (to write down a record for the neuro).

Of course, back in Nowheresville, Michigan I got nasty looks and comments

when I nursed Micahel in public - and I was very discreet. I don't want to

think about what they'd say and do in response to autism and seizures.

-Sara.

> > The only time I ever had a parent pull their kid away from mine was

> > when I told her was epileptic. She refused to wait in the

> I never could understand why people refuse to be educated and allow

> their own stupidity to run amuck. Idiots.

[Guest guest]

You know, we haven't had this either, even when Gabe has had seizures in

public and Matt and I have been discussing when his last one was and how

long this one lasted and etc (to write down a record for the neuro).

Of course, back in Nowheresville, Michigan I got nasty looks and comments

when I nursed Micahel in public - and I was very discreet. I don't want to

think about what they'd say and do in response to autism and seizures.

-Sara.

> > The only time I ever had a parent pull their kid away from mine was

> > when I told her was epileptic. She refused to wait in the

> I never could understand why people refuse to be educated and allow

> their own stupidity to run amuck. Idiots.

[Guest guest]

> I never could understand why people refuse to be educated and allow

> their own stupidity to run amuck. Idiots.

The only good thing about the situation was that was only about

2 so he didn't understand what was going on. I'm sure he picked up on

my anger but I always tried to make certain the kids didn't think I

was angry with them.

Tina

[Guest guest]

My personal opinion is that the more people are aware of autism and know

what to expect, the better in the long run. I am always quick to explain

that Ebony has autism. Sometimes I get a confused look and then I explain

that she is non-verbal. That usually is enough to shut people up.

I do know that a lot of people prefer to keep the diagnosis to themselves

and I can especially understand that if the child is higher functioning and

could feasibly remain at age level and be mainstreamed. Ebony is not going

to be there, so I like to make sure that people know what is going on with

her. Especially in my community, as she is a runner and I want them aware

of that. They say it takes a community to raise a child.

Tamara

mom to Ebony, 5 years old, asd, adhd, bipolar

and , 2, polish (lol)

wife to Terry

>

>Reply-To: parenting_autism

>To: parenting_autism >

>Subject: How do you deal with telling or not telling

>about DX

>Date: Sat, 19 Apr 2003 07:34:03 -0400

>

>Good Morning Everyone,

>

> is getting to the age where other children or adults will speak to

>him (like at the playground or the beach) and expect a reply. Not that they

>are rude but just normal interaction. Up to this point, I would just smile

>and say " say Hi " . He is almost 2.5 now and I don't want people to

>think we are rude. Luckily he looks a bit younger than he is so perhaps

>people don't think too much yet but they will as he gets older. He was only

>Dx in March so we have in the mode of not telling people about his DX yet.

>At the ped, a child was talking to him with his mother and I could tell the

>mother thought it odd that he did not reply or was just talking

> " justinspeak " , her son was 1 year younger and talking. So I said, " he is a

>bit delayed and doesn't speak yet " and Her reply " oh don't worry he will,

>my son talks so much because I talk to him all the time " !! Ok I just bite

>my tongue and smiled. (This was before his dx)...I know she meant

>well........

>

>Oh so before I go off on a ramble about that, I will get back to my

>point...Do you tell strangers your child is Autistic, do you just not say

>anything? I just don't know. I am not ashamed of my son however I know the

>stigma that goes with Autism and I know that many people will react very

>strongly to it and perhaps not want their child to play with mine (like it

>is catching LOL). Maybe I don't give people enough credit......

>

>I would love to hear all your thoughts. I will be back tomorrow night,

>taking the boys to the grandparents

>

>Warm Regards

>

> & ASD 11/25/00 in Maine

>

>

>---

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>

[Guest guest]

My two auties verbal stim so much, I usually don't have people trying to talk

to them. It is obvious something is " wrong " . I live in a somewhat small

town, and I shop at the same store (Super Walmart knows us well). That helps.

I have had stockboys chase the kids down for me before..lol.

Now, if I get a comment or a dirty look, then I will say they are autistic,

and can not help it. This only happens if I am out with the kids by myself.

When I am with my hubby, I don't get the comments or stares. Maybe because

hubby is 6'6 " and 250 pounds? lololol

[Guest guest]

My two auties verbal stim so much, I usually don't have people trying to talk

to them. It is obvious something is " wrong " . I live in a somewhat small

town, and I shop at the same store (Super Walmart knows us well). That helps.

I have had stockboys chase the kids down for me before..lol.

Now, if I get a comment or a dirty look, then I will say they are autistic,

and can not help it. This only happens if I am out with the kids by myself.

When I am with my hubby, I don't get the comments or stares. Maybe because

hubby is 6'6 " and 250 pounds? lololol

[Guest guest]

My two auties verbal stim so much, I usually don't have people trying to talk

to them. It is obvious something is " wrong " . I live in a somewhat small

town, and I shop at the same store (Super Walmart knows us well). That helps.

I have had stockboys chase the kids down for me before..lol.

Now, if I get a comment or a dirty look, then I will say they are autistic,

and can not help it. This only happens if I am out with the kids by myself.

When I am with my hubby, I don't get the comments or stares. Maybe because

hubby is 6'6 " and 250 pounds? lololol

[Guest guest]

Whoops... I really didn't want to send that until I had added something

uplifting. however felt it needed to be said LOL.