Re: How did your children get diagnosed?

[Guest guest]

Here's our experience:

At 17 months I knew something was going on with my daughter and

addressed my concerns with our pediatrician. He looked at 's

chart and said she was hitting all of the milestones and " developing

beautifully " . At age 2 I had even more concerns and he told me it

was " still too early for it to be something like autism " . By 2 1/2

's issues were quite apparent and I ended up having her

evaluated by our local early intervention agency. They are not

allowed to diagnose, so they gave her the label of developmental

delay. Although she clearly had all signs of an Autism Spectrum

Disorder she received the bare minimum services. At this time we

made appointments with a neurologist and a developmental pediatrician

at Children's Hospital of Philadelphia. We were put on a waiting

list for 6 months. When turned 3 she transitioned from early

intervention to our county's intermediate unit, where they too called

her developmentally delayed. This past June we saw a neurologist,

who read the evaluation report from the intermediate unit, asked us a

few questions, looked at for a few minutes and labeled her PDD-

NOS. In July we saw the developmental pediatrician at CHOP. They

did an extensive evaluation, administered the ADOS, did speech and OT

evals, asked us questions, read over all of our paperwork,

checklists, etc. The developmetal ped. said ASD. I felt that

diagnosis was the most accurate and we will be returning to see her

for our follow-up visit. Once we had the label (back in July), we

approached the intermediate unit to ask them to provide an ABA

program. They disagreed with CHOP's diagnosis and said " she just has

processing, sensory, and motor planning issues. " Here we are 3 months

later and still fighting. Sorry this post is so long, but I am

frustrated and angry that these " professionals " have no clue what

they are doing. I have lost so much time because of their

incompetency.

Lori

> >

> > How did your children with autism get diagnosed? Did a

neurologist

> tell you it was autism, pdd, aspergers, etc?? What kind of testing

> did your child have to get to that point of determination? Also do

> you take your children with autism to the neurologist and/or dev.

> pediatrician regularly? I'm not that happy with my last neurologist

> appt with her just asking me questions while my daughter was scared

so

> didn't do anything. Her answer to potty training was, nobody goes

to

> college in diapers. I'm trying to figure this all out one year

later

> after diagnosis...

> >

> > Jen

>

[Guest guest]

Here's our experience:

At 17 months I knew something was going on with my daughter and

addressed my concerns with our pediatrician. He looked at 's

chart and said she was hitting all of the milestones and " developing

beautifully " . At age 2 I had even more concerns and he told me it

was " still too early for it to be something like autism " . By 2 1/2

's issues were quite apparent and I ended up having her

evaluated by our local early intervention agency. They are not

allowed to diagnose, so they gave her the label of developmental

delay. Although she clearly had all signs of an Autism Spectrum

Disorder she received the bare minimum services. At this time we

made appointments with a neurologist and a developmental pediatrician

at Children's Hospital of Philadelphia. We were put on a waiting

list for 6 months. When turned 3 she transitioned from early

intervention to our county's intermediate unit, where they too called

her developmentally delayed. This past June we saw a neurologist,

who read the evaluation report from the intermediate unit, asked us a

few questions, looked at for a few minutes and labeled her PDD-

NOS. In July we saw the developmental pediatrician at CHOP. They

did an extensive evaluation, administered the ADOS, did speech and OT

evals, asked us questions, read over all of our paperwork,

checklists, etc. The developmetal ped. said ASD. I felt that

diagnosis was the most accurate and we will be returning to see her

for our follow-up visit. Once we had the label (back in July), we

approached the intermediate unit to ask them to provide an ABA

program. They disagreed with CHOP's diagnosis and said " she just has

processing, sensory, and motor planning issues. " Here we are 3 months

later and still fighting. Sorry this post is so long, but I am

frustrated and angry that these " professionals " have no clue what

they are doing. I have lost so much time because of their

incompetency.

Lori

> >

> > How did your children with autism get diagnosed? Did a

neurologist

> tell you it was autism, pdd, aspergers, etc?? What kind of testing

> did your child have to get to that point of determination? Also do

> you take your children with autism to the neurologist and/or dev.

> pediatrician regularly? I'm not that happy with my last neurologist

> appt with her just asking me questions while my daughter was scared

so

> didn't do anything. Her answer to potty training was, nobody goes

to

> college in diapers. I'm trying to figure this all out one year

later

> after diagnosis...

> >

> > Jen

>

[Guest guest]

Hi Jen,

My daughter was diagnosed at 25 months. She saw a Pediatric

Neurologist. 20 Minutes into visit I got the news. I didn't have a

clue then. She observed her and was able to diagnosis her. Had I

known more I'd been able to diagnosis her.

I asked what her severity level was. She wouldn't tell me. We

talked briefly about schools. I later found out that she wrote in

the chart severe severity.

Most wounldn't call her severe today. I'd say moderate as she has

come along way. We were caught totally by surprise with the

diagnosis. Looking back I noticed things as early as 6-7 months

old. Didn't know what to make of it. She'd cram herself in the

corner of the crib. I'd pull her down to the middle only to find

her back there within a short time. She was craving deep pressure

and still required much deep pressure to regulate.

>

> How did your children with autism get diagnosed? Did a

neurologist tell you it was autism, pdd, aspergers, etc?? What kind

of testing did your child have to get to that point of

determination? Also do you take your children with autism to the

neurologist and/or dev. pediatrician regularly? I'm not that happy

with my last neurologist appt with her just asking me questions

while my daughter was scared so didn't do anything. Her answer to

potty training was, nobody goes to college in diapers. I'm trying

to figure this all out one year later after diagnosis...

>

> Jen

>

>

>

>

[Guest guest]

Hi Jen,

My daughter was diagnosed at 25 months. She saw a Pediatric

Neurologist. 20 Minutes into visit I got the news. I didn't have a

clue then. She observed her and was able to diagnosis her. Had I

known more I'd been able to diagnosis her.

I asked what her severity level was. She wouldn't tell me. We

talked briefly about schools. I later found out that she wrote in

the chart severe severity.

Most wounldn't call her severe today. I'd say moderate as she has

come along way. We were caught totally by surprise with the

diagnosis. Looking back I noticed things as early as 6-7 months

old. Didn't know what to make of it. She'd cram herself in the

corner of the crib. I'd pull her down to the middle only to find

her back there within a short time. She was craving deep pressure

and still required much deep pressure to regulate.

>

> How did your children with autism get diagnosed? Did a

neurologist tell you it was autism, pdd, aspergers, etc?? What kind

of testing did your child have to get to that point of

determination? Also do you take your children with autism to the

neurologist and/or dev. pediatrician regularly? I'm not that happy

with my last neurologist appt with her just asking me questions

while my daughter was scared so didn't do anything. Her answer to

potty training was, nobody goes to college in diapers. I'm trying

to figure this all out one year later after diagnosis...

>

> Jen

>

>

>

>

[Guest guest]

Hi Jen,

My daughter was diagnosed at 25 months. She saw a Pediatric

Neurologist. 20 Minutes into visit I got the news. I didn't have a

clue then. She observed her and was able to diagnosis her. Had I

known more I'd been able to diagnosis her.

I asked what her severity level was. She wouldn't tell me. We

talked briefly about schools. I later found out that she wrote in

the chart severe severity.

Most wounldn't call her severe today. I'd say moderate as she has

come along way. We were caught totally by surprise with the

diagnosis. Looking back I noticed things as early as 6-7 months

old. Didn't know what to make of it. She'd cram herself in the

corner of the crib. I'd pull her down to the middle only to find

her back there within a short time. She was craving deep pressure

and still required much deep pressure to regulate.

>

> How did your children with autism get diagnosed? Did a

neurologist tell you it was autism, pdd, aspergers, etc?? What kind

of testing did your child have to get to that point of

determination? Also do you take your children with autism to the

neurologist and/or dev. pediatrician regularly? I'm not that happy

with my last neurologist appt with her just asking me questions

while my daughter was scared so didn't do anything. Her answer to

potty training was, nobody goes to college in diapers. I'm trying

to figure this all out one year later after diagnosis...

>

> Jen

>

>

>

>

[Guest guest]

We started at 15 months with the HMO pediatricians, who gave us the

" overanxious parent, " " no child progresses at the same rate, " yada yada yada.

It

wasn't any one big thing, it was a hundred little things adding up to a nagging

worry. For example it wasn't that she didn't walk, it was that she could

crawl faster than I could walk, but wasn't even trying to pull herself up on

things.

At 18 months when she FINALLY took a step (after 3 months of constant home

based work we made up ourselves on muscle tone, balance, and coordination) it

was " There now, see, you were worried about nothing. " They didn't think it

important that she had a strange fascination with ceiling fans and a tendency

to twirl her ankles like propellers when she was happy or excited by

something.

For a while things seemed OK. She was behind in most things at 24 months,

but I was off from work for the summer and worked with her constantly. By the

end of summer she could use 2 and 3 word phrases and tell me all her colors,

shapes, numbers. She laughed and played Itsy Bitsy Spider and shrieked with

joy and interacted with us, but couldn't look at something I pointed to.

Come to think of it, she's 10 and still doesn't do that! The toe walking and

encyclopedic ability to dialogue Disney movies the HMO docs thought was " cute. "

The next year, the year of regression, was like one of those slow motion

nightmares. At 32 months she could barely say a word. She was diagnosed as

speech delayed by the school district, and we were finally able to get her

professional treatment based on her speech needs.

At 4-1/2 (after 1-1/2 years of regaining words and articulation) we could

finally tell that while she could communicate she was not able to handle the

give-and-take of conversation at even a 3 year old's ability level. The good

news was she was finally starting to potty train. The bad news was that

Allie's speech teacher told us she believed that Allie had sensory dysfunction

as

well. I hadn't known autism from apples until I started doing those web

searches on sensory dysfunction and kept running into autism. That's when

everything started to click into place for us.

We went to a private Pediatric Diagnostician at our own expense, and by age

5 she had a diagnosis of Asperger's Syndrome (based on her then-current

language ability I guess), Obsessive Compulsive Disorder, and possible AD/HD,

with

recommendations for intensive OT. We called a meeting w/the school and

presented the diagnosis. The school district did their own evaluation (of

course) and came up with PDD-NOS and OCD. The school has never admitted that

her

OT needs effect her academic performance and have always refused services.

Except for her huge language regression, Allie was always hanging on the

back edge of acceptable progress on all of her other milestones. It was

impossible to get Pediatricians and school personnel to listen most of the time

because she was so high functioning. She would have been much more delayed in

most areas, but I was constantly providing therapy and treatment at home. That

kept her almost up to the worst-case edge of acceptable most of the time -

kind of good news/bad news thing.

We want to take her to a Neuro-psychologist for an updated evaluation, but

can't afford it yet. It has been really hard to get anything done since the

insurance companies found out about the OCD and refused to insure her. They

can get away with that when you're self-employed, just lovely!

Sandi (Allie's Mom)

Houston

[Guest guest]

We started at 15 months with the HMO pediatricians, who gave us the

" overanxious parent, " " no child progresses at the same rate, " yada yada yada.

It

wasn't any one big thing, it was a hundred little things adding up to a nagging

worry. For example it wasn't that she didn't walk, it was that she could

crawl faster than I could walk, but wasn't even trying to pull herself up on

things.

At 18 months when she FINALLY took a step (after 3 months of constant home

based work we made up ourselves on muscle tone, balance, and coordination) it

was " There now, see, you were worried about nothing. " They didn't think it

important that she had a strange fascination with ceiling fans and a tendency

to twirl her ankles like propellers when she was happy or excited by

something.

For a while things seemed OK. She was behind in most things at 24 months,

but I was off from work for the summer and worked with her constantly. By the

end of summer she could use 2 and 3 word phrases and tell me all her colors,

shapes, numbers. She laughed and played Itsy Bitsy Spider and shrieked with

joy and interacted with us, but couldn't look at something I pointed to.

Come to think of it, she's 10 and still doesn't do that! The toe walking and

encyclopedic ability to dialogue Disney movies the HMO docs thought was " cute. "

The next year, the year of regression, was like one of those slow motion

nightmares. At 32 months she could barely say a word. She was diagnosed as

speech delayed by the school district, and we were finally able to get her

professional treatment based on her speech needs.

At 4-1/2 (after 1-1/2 years of regaining words and articulation) we could

finally tell that while she could communicate she was not able to handle the

give-and-take of conversation at even a 3 year old's ability level. The good

news was she was finally starting to potty train. The bad news was that

Allie's speech teacher told us she believed that Allie had sensory dysfunction

as

well. I hadn't known autism from apples until I started doing those web

searches on sensory dysfunction and kept running into autism. That's when

everything started to click into place for us.

We went to a private Pediatric Diagnostician at our own expense, and by age

5 she had a diagnosis of Asperger's Syndrome (based on her then-current

language ability I guess), Obsessive Compulsive Disorder, and possible AD/HD,

with

recommendations for intensive OT. We called a meeting w/the school and

presented the diagnosis. The school district did their own evaluation (of

course) and came up with PDD-NOS and OCD. The school has never admitted that

her

OT needs effect her academic performance and have always refused services.

Except for her huge language regression, Allie was always hanging on the

back edge of acceptable progress on all of her other milestones. It was

impossible to get Pediatricians and school personnel to listen most of the time

because she was so high functioning. She would have been much more delayed in

most areas, but I was constantly providing therapy and treatment at home. That

kept her almost up to the worst-case edge of acceptable most of the time -

kind of good news/bad news thing.

We want to take her to a Neuro-psychologist for an updated evaluation, but

can't afford it yet. It has been really hard to get anything done since the

insurance companies found out about the OCD and refused to insure her. They

can get away with that when you're self-employed, just lovely!

Sandi (Allie's Mom)

Houston

[Guest guest]

We started at 15 months with the HMO pediatricians, who gave us the

" overanxious parent, " " no child progresses at the same rate, " yada yada yada.

It

wasn't any one big thing, it was a hundred little things adding up to a nagging

worry. For example it wasn't that she didn't walk, it was that she could

crawl faster than I could walk, but wasn't even trying to pull herself up on

things.

At 18 months when she FINALLY took a step (after 3 months of constant home

based work we made up ourselves on muscle tone, balance, and coordination) it

was " There now, see, you were worried about nothing. " They didn't think it

important that she had a strange fascination with ceiling fans and a tendency

to twirl her ankles like propellers when she was happy or excited by

something.

For a while things seemed OK. She was behind in most things at 24 months,

but I was off from work for the summer and worked with her constantly. By the

end of summer she could use 2 and 3 word phrases and tell me all her colors,

shapes, numbers. She laughed and played Itsy Bitsy Spider and shrieked with

joy and interacted with us, but couldn't look at something I pointed to.

Come to think of it, she's 10 and still doesn't do that! The toe walking and

encyclopedic ability to dialogue Disney movies the HMO docs thought was " cute. "

The next year, the year of regression, was like one of those slow motion

nightmares. At 32 months she could barely say a word. She was diagnosed as

speech delayed by the school district, and we were finally able to get her

professional treatment based on her speech needs.

At 4-1/2 (after 1-1/2 years of regaining words and articulation) we could

finally tell that while she could communicate she was not able to handle the

give-and-take of conversation at even a 3 year old's ability level. The good

news was she was finally starting to potty train. The bad news was that

Allie's speech teacher told us she believed that Allie had sensory dysfunction

as

well. I hadn't known autism from apples until I started doing those web

searches on sensory dysfunction and kept running into autism. That's when

everything started to click into place for us.

We went to a private Pediatric Diagnostician at our own expense, and by age

5 she had a diagnosis of Asperger's Syndrome (based on her then-current

language ability I guess), Obsessive Compulsive Disorder, and possible AD/HD,

with

recommendations for intensive OT. We called a meeting w/the school and

presented the diagnosis. The school district did their own evaluation (of

course) and came up with PDD-NOS and OCD. The school has never admitted that

her

OT needs effect her academic performance and have always refused services.

Except for her huge language regression, Allie was always hanging on the

back edge of acceptable progress on all of her other milestones. It was

impossible to get Pediatricians and school personnel to listen most of the time

because she was so high functioning. She would have been much more delayed in

most areas, but I was constantly providing therapy and treatment at home. That

kept her almost up to the worst-case edge of acceptable most of the time -

kind of good news/bad news thing.

We want to take her to a Neuro-psychologist for an updated evaluation, but

can't afford it yet. It has been really hard to get anything done since the

insurance companies found out about the OCD and refused to insure her. They

can get away with that when you're self-employed, just lovely!

Sandi (Allie's Mom)

Houston

[Guest guest]

Bad doctors can do more damage than untreated problems in some cases. When i

was a child, I had to have surgery. The nurse needed to get a special xray of

my kidneys and to do so I had some radio-opaque dye injected into me. It hurt

and I started to scream. I also didn't like being strapped to a table. The

nurse yelled at me " stop screaming or I will break this needle off in your arm! "

I am still afraid of needles. I hid from the doctor the last time he wanted

blood from me because I cannot seem to make that bad experience go away.

I also saw a counselor when I was 10. I told her of my night terrors (not

knowing about the autism then) and told her I wanted to stop having them. I

told her I was only able to sleep if my mother was with me. So the counselor

said to me " what would you do if your mother died? " I was a late life child and

my mom was the age of most children's grandparents. She made my fears of her

early death magnify. I was 25 before I trusted a counselor again and was able

to stop having the night terrors.

Don't be afraid to ask the doctor questions, like you are interviewing them.

There are bad doctors just like there are bad lawyers and bad plumbers. If you

sense something wrong, trust your instinct. It matters not if you have verbal

reasons. If I waited to follow new paths based on my ability to verballize what

I see wrong, I would still be in grade school. I hope this helps.

Re: How did your children get diagnosed?

Jen, please excuse my poor attitude, but your neuro sounds like a

complete idiot. Does she think a statement like that is gonna do

*anything* to give you confidence, training, or help? I'm sorry, but I

get so fed up with professionals being more trouble than help!

With allie I found myself doing searches for " autism " on the web when

she was 10 mos old when she regressed. However for her age she wasn't

supposed to do all the things listed so I kept quiet. At 18 mos I

realized something was wrong more than my imagination so I called her

doc who scheduled her for a hearing test. I told audiologist I felt

she had good hearing but has autism instead, she wrote the standard

list for what was done. She said we'd need a full hearing test

including ABR, speech consult, neurology consult, and that finally a

developmental psychologist would give the dx. We got her dx 2 wks

before her 2nd bday, but then the school required a MD to give the dx.

I found this stupid because the dx for ASD is a psychological

assessment from the DSM-IV, yet the school required it. In the most

basic definition, autism is a set of behaviors and if a child has

enough of them, they are given that dx.

HTH,

Debi

>

> How did your children with autism get diagnosed? Did a neurologist

tell you it was autism, pdd, aspergers, etc?? What kind of testing

did your child have to get to that point of determination? Also do

you take your children with autism to the neurologist and/or dev.

pediatrician regularly? I'm not that happy with my last neurologist

appt with her just asking me questions while my daughter was scared so

didn't do anything. Her answer to potty training was, nobody goes to

college in diapers. I'm trying to figure this all out one year later

after diagnosis...

>

> Jen

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

Bad doctors can do more damage than untreated problems in some cases. When i

was a child, I had to have surgery. The nurse needed to get a special xray of

my kidneys and to do so I had some radio-opaque dye injected into me. It hurt

and I started to scream. I also didn't like being strapped to a table. The

nurse yelled at me " stop screaming or I will break this needle off in your arm! "

I am still afraid of needles. I hid from the doctor the last time he wanted

blood from me because I cannot seem to make that bad experience go away.

I also saw a counselor when I was 10. I told her of my night terrors (not

knowing about the autism then) and told her I wanted to stop having them. I

told her I was only able to sleep if my mother was with me. So the counselor

said to me " what would you do if your mother died? " I was a late life child and

my mom was the age of most children's grandparents. She made my fears of her

early death magnify. I was 25 before I trusted a counselor again and was able

to stop having the night terrors.

Don't be afraid to ask the doctor questions, like you are interviewing them.

There are bad doctors just like there are bad lawyers and bad plumbers. If you

sense something wrong, trust your instinct. It matters not if you have verbal

reasons. If I waited to follow new paths based on my ability to verballize what

I see wrong, I would still be in grade school. I hope this helps.

Re: How did your children get diagnosed?

Jen, please excuse my poor attitude, but your neuro sounds like a

complete idiot. Does she think a statement like that is gonna do

*anything* to give you confidence, training, or help? I'm sorry, but I

get so fed up with professionals being more trouble than help!

With allie I found myself doing searches for " autism " on the web when

she was 10 mos old when she regressed. However for her age she wasn't

supposed to do all the things listed so I kept quiet. At 18 mos I

realized something was wrong more than my imagination so I called her

doc who scheduled her for a hearing test. I told audiologist I felt

she had good hearing but has autism instead, she wrote the standard

list for what was done. She said we'd need a full hearing test

including ABR, speech consult, neurology consult, and that finally a

developmental psychologist would give the dx. We got her dx 2 wks

before her 2nd bday, but then the school required a MD to give the dx.

I found this stupid because the dx for ASD is a psychological

assessment from the DSM-IV, yet the school required it. In the most

basic definition, autism is a set of behaviors and if a child has

enough of them, they are given that dx.

HTH,

Debi

>

> How did your children with autism get diagnosed? Did a neurologist

tell you it was autism, pdd, aspergers, etc?? What kind of testing

did your child have to get to that point of determination? Also do

you take your children with autism to the neurologist and/or dev.

pediatrician regularly? I'm not that happy with my last neurologist

appt with her just asking me questions while my daughter was scared so

didn't do anything. Her answer to potty training was, nobody goes to

college in diapers. I'm trying to figure this all out one year later

after diagnosis...

>

> Jen

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

Bad doctors can do more damage than untreated problems in some cases. When i

was a child, I had to have surgery. The nurse needed to get a special xray of

my kidneys and to do so I had some radio-opaque dye injected into me. It hurt

and I started to scream. I also didn't like being strapped to a table. The

nurse yelled at me " stop screaming or I will break this needle off in your arm! "

I am still afraid of needles. I hid from the doctor the last time he wanted

blood from me because I cannot seem to make that bad experience go away.

I also saw a counselor when I was 10. I told her of my night terrors (not

knowing about the autism then) and told her I wanted to stop having them. I

told her I was only able to sleep if my mother was with me. So the counselor

said to me " what would you do if your mother died? " I was a late life child and

my mom was the age of most children's grandparents. She made my fears of her

early death magnify. I was 25 before I trusted a counselor again and was able

to stop having the night terrors.

Don't be afraid to ask the doctor questions, like you are interviewing them.

There are bad doctors just like there are bad lawyers and bad plumbers. If you

sense something wrong, trust your instinct. It matters not if you have verbal

reasons. If I waited to follow new paths based on my ability to verballize what

I see wrong, I would still be in grade school. I hope this helps.

Re: How did your children get diagnosed?

Jen, please excuse my poor attitude, but your neuro sounds like a

complete idiot. Does she think a statement like that is gonna do

*anything* to give you confidence, training, or help? I'm sorry, but I

get so fed up with professionals being more trouble than help!

With allie I found myself doing searches for " autism " on the web when

she was 10 mos old when she regressed. However for her age she wasn't

supposed to do all the things listed so I kept quiet. At 18 mos I

realized something was wrong more than my imagination so I called her

doc who scheduled her for a hearing test. I told audiologist I felt

she had good hearing but has autism instead, she wrote the standard

list for what was done. She said we'd need a full hearing test

including ABR, speech consult, neurology consult, and that finally a

developmental psychologist would give the dx. We got her dx 2 wks

before her 2nd bday, but then the school required a MD to give the dx.

I found this stupid because the dx for ASD is a psychological

assessment from the DSM-IV, yet the school required it. In the most

basic definition, autism is a set of behaviors and if a child has

enough of them, they are given that dx.

HTH,

Debi

>

> How did your children with autism get diagnosed? Did a neurologist

tell you it was autism, pdd, aspergers, etc?? What kind of testing

did your child have to get to that point of determination? Also do

you take your children with autism to the neurologist and/or dev.

pediatrician regularly? I'm not that happy with my last neurologist

appt with her just asking me questions while my daughter was scared so

didn't do anything. Her answer to potty training was, nobody goes to

college in diapers. I'm trying to figure this all out one year later

after diagnosis...

>

> Jen

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

To play with speech words

I am not sure it is entirely true to say that nobody goes to college in

diapers.....I know plenty of babies that are already graduates. At least they

complain like babies. (That is a joke)

To be serious now. As one with autism, I am tired of cynical doctors. All they

think about is how to make us " fit in. " Maybe we don't want to " fit in. " Maybe

we are comfortable with being us and want others to remove the filters from

their lenses and see us as people. I felt like the school always wanted to

train me, like a puppy dog, " Hey look what I can make the wierd kid do. "

Applaud me with loud hands when I do something stupid like write neatly, but

then ignore me or call me wierd or geek because at 12 I figure out that the

Bermuda triangle mystery lies in methane gas and is therefore no mystery at all.

I remember writing once that I wanted to win the Nobel prize or recieve an

honorary degree. My teacher gave me a " C " on the paper because the handwriting

was so sloppy with the foot note " how can you win a Nobel prize if they can't

read your handwriting? " I would hate to tell her that 4 years later, I was

accepted to Harvard based on my essay, and despite the fact I dropped out of

high school at 16.

I never attended Harvard because I was afraid to go away from home. So many

places adults were cynical and it caged me. Ignore these statements and teach

your kids that these people are wrong. People tend to make up crazy statements

when they find themselves in the position of having to say " I don't know. "

RE: How did your children get diagnosed?

>> Her answer to potty training was, nobody goes to

>>college in diapers. I'm trying to figure this all out one

>>year later after diagnosis...

What a bizarre thing to say....

You should write her a thank you card and ask her.

---------------------------------------------

Dear Dr ___________,

Thank you for the diagnosis.

On this date, you said " nobody goes to college in diapers " .

Do you mean my child will go to college, or that she will never need to be

out of diapers because she won't?

I'm curious what you highly educated mind meant to imply to me cause I am

STILL wondering how to go about potty-training my child, which - if you

recall - was the original question to which you replied with the above

statement.

Please enlighten a poor soul.

---------------------------------------------

Some people.....

Go to a different doctor who has a CLUE.

My kids were dx'd by a pediatric neurologist at Kaiser, and then again by

the developmental pediatrician at Regional Center. Neither were all that

mind-blowing or awe-inspiring, though the first definitely feigned more

interest/compassion, but it didn't matter much to me. I went in knowing

what was the case - and I wanted it on paper so I could get my kids what

they needed. The only time I would have had a problem is if they told me

everything seemed normal when I knew it was NOT.

Grace

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

Our situation was different -- Vivianna was adopted from China at 14

months and there was something definitely not right about her -- she

was severely malnourished and had been in a bad foster home. She

couldn't even sit up and had trouble holding up her head. They did

an MRI and EEG there and didn't find any abnormalities.

As soon as we brought her home we started PT, OT, and speech therapy

(she wouldn't take nourishment unless it was in a bottle). We made

an appointment for the developmental clinic at Arkansas Children's

Hospital. They saw her in October 2003 and then in May 2004 --

could tell us nothing more than to continue therapies. We tried

attachment therapy last summer and that helped with eye contact (at

least we have some) and allowing us to hold her and cuddle. That

therapist said there was more than attachment and developmental

delays going on.

So, we made an appointment at Children's Hospital again this summer

and they administered the CARS and she was diagnosed as moderate

(mild end). They told us they could not have been sure about that

diagnosis the other times they saw her because there was so much not

known about her background and neglect. It's true that

institutionalized children sometimes exhibit autistic like behaviors

that go away after a year or so, but Vivianna's didn't.

They told us that even if she had been diagnosed earlier, they would

have still recommended what we were already doing with all the

therapies.

I still sometimes wonder how much her past history has impacted her

and keep wishing that some of her behaviors would improve over

time. Most of all, I want her to talk. She turned 3 in June and

doesn't say a single word -- just sounds and lots of screaming when

frustrated which is often. She doesn't do signs well either --

we're going to work on pictures. But I still want her to be able to

talk. (oh, and yes, we'd like her to be potty trained eventually

too!)

Northrip

[Guest guest]

Our situation was different -- Vivianna was adopted from China at 14

months and there was something definitely not right about her -- she

was severely malnourished and had been in a bad foster home. She

couldn't even sit up and had trouble holding up her head. They did

an MRI and EEG there and didn't find any abnormalities.

As soon as we brought her home we started PT, OT, and speech therapy

(she wouldn't take nourishment unless it was in a bottle). We made

an appointment for the developmental clinic at Arkansas Children's

Hospital. They saw her in October 2003 and then in May 2004 --

could tell us nothing more than to continue therapies. We tried

attachment therapy last summer and that helped with eye contact (at

least we have some) and allowing us to hold her and cuddle. That

therapist said there was more than attachment and developmental

delays going on.

So, we made an appointment at Children's Hospital again this summer

and they administered the CARS and she was diagnosed as moderate

(mild end). They told us they could not have been sure about that

diagnosis the other times they saw her because there was so much not

known about her background and neglect. It's true that

institutionalized children sometimes exhibit autistic like behaviors

that go away after a year or so, but Vivianna's didn't.

They told us that even if she had been diagnosed earlier, they would

have still recommended what we were already doing with all the

therapies.

I still sometimes wonder how much her past history has impacted her

and keep wishing that some of her behaviors would improve over

time. Most of all, I want her to talk. She turned 3 in June and

doesn't say a single word -- just sounds and lots of screaming when

frustrated which is often. She doesn't do signs well either --

we're going to work on pictures. But I still want her to be able to

talk. (oh, and yes, we'd like her to be potty trained eventually

too!)

Northrip

[Guest guest]

Our situation was different -- Vivianna was adopted from China at 14

months and there was something definitely not right about her -- she

was severely malnourished and had been in a bad foster home. She

couldn't even sit up and had trouble holding up her head. They did

an MRI and EEG there and didn't find any abnormalities.

As soon as we brought her home we started PT, OT, and speech therapy

(she wouldn't take nourishment unless it was in a bottle). We made

an appointment for the developmental clinic at Arkansas Children's

Hospital. They saw her in October 2003 and then in May 2004 --

could tell us nothing more than to continue therapies. We tried

attachment therapy last summer and that helped with eye contact (at

least we have some) and allowing us to hold her and cuddle. That

therapist said there was more than attachment and developmental

delays going on.

So, we made an appointment at Children's Hospital again this summer

and they administered the CARS and she was diagnosed as moderate

(mild end). They told us they could not have been sure about that

diagnosis the other times they saw her because there was so much not

known about her background and neglect. It's true that

institutionalized children sometimes exhibit autistic like behaviors

that go away after a year or so, but Vivianna's didn't.

They told us that even if she had been diagnosed earlier, they would

have still recommended what we were already doing with all the

therapies.

I still sometimes wonder how much her past history has impacted her

and keep wishing that some of her behaviors would improve over

time. Most of all, I want her to talk. She turned 3 in June and

doesn't say a single word -- just sounds and lots of screaming when

frustrated which is often. She doesn't do signs well either --

we're going to work on pictures. But I still want her to be able to

talk. (oh, and yes, we'd like her to be potty trained eventually

too!)

Northrip

[Guest guest]

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college in

diapers.....

It's not.

Plenty of people with physical disabilities do every day. And then there's the

older non

traditional students who use depends.

It's only when a difference is invisible that people get their panties in a

twist about what kind

of undergarment you're wearing. If potty training is so difficult...ok fine.

Table it and move on

and come back later.

Dumb doctors.

Kassiane

[Guest guest]

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college in

diapers.....

It's not.

Plenty of people with physical disabilities do every day. And then there's the

older non

traditional students who use depends.

It's only when a difference is invisible that people get their panties in a

twist about what kind

of undergarment you're wearing. If potty training is so difficult...ok fine.

Table it and move on

and come back later.

Dumb doctors.

Kassiane

[Guest guest]

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college in

diapers.....

It's not.

Plenty of people with physical disabilities do every day. And then there's the

older non

traditional students who use depends.

It's only when a difference is invisible that people get their panties in a

twist about what kind

of undergarment you're wearing. If potty training is so difficult...ok fine.

Table it and move on

and come back later.

Dumb doctors.

Kassiane

[Guest guest]

When I was in high school we had this teacher, Mrs. Pruitt. She was

the chemistry & physics teacher. She told us when she was in high

school, and this was probably the 1950's-60's, her guidance counselor

asked her what she wanted to do. I can't remember specifically what

Ms. Pruitt said, but she said the counselor said, " You can never go to

college -- you aren't smart enough and won't make it, don't put

yourself through that. " Well, Mrs. Pruitt DID go to college and DID

graduate with a chemistry/physics major and was one of our favorite

teachers. She won Tennessee's teacher of the year award at least once,

and other teacher of the year awards besides that one.

ANYONE who wants to go to college can go and success, IMHO.

Debi

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college

in diapers.....I know plenty of babies that are already graduates. At

least they complain like babies. (That is a joke)

>

> To be serious now. As one with autism, I am tired of cynical

doctors. All they think about is how to make us " fit in. " Maybe we

don't want to " fit in. " Maybe we are comfortable with being us and

want others to remove the filters from their lenses and see us as

people. I felt like the school always wanted to train me, like a

puppy dog, " Hey look what I can make the wierd kid do. " Applaud me

with loud hands when I do something stupid like write neatly, but then

ignore me or call me wierd or geek because at 12 I figure out that the

Bermuda triangle mystery lies in methane gas and is therefore no

mystery at all. I remember writing once that I wanted to win the

Nobel prize or recieve an honorary degree. My teacher gave me a " C "

on the paper because the handwriting was so sloppy with the foot note

" how can you win a Nobel prize if they can't read your handwriting? "

I would hate to tell her that 4 years later, I was accepted to Harvard

based on my essay, and despite the fact I dropped out of high school

at 16.

>

> I never attended Harvard because I was afraid to go away from home.

So many places adults were cynical and it caged me. Ignore these

statements and teach your kids that these people are wrong. People

tend to make up crazy statements when they find themselves in the

position of having to say " I don't know. "

>

>

>

> RE: How did your children get diagnosed?

>

>

> >> Her answer to potty training was, nobody goes to

> >>college in diapers. I'm trying to figure this all out one

> >>year later after diagnosis...

>

>

> What a bizarre thing to say....

>

> You should write her a thank you card and ask her.

>

> ---------------------------------------------

> Dear Dr ___________,

>

>

> Thank you for the diagnosis.

>

> On this date, you said " nobody goes to college in diapers " .

> Do you mean my child will go to college, or that she will never

need to be

> out of diapers because she won't?

>

> I'm curious what you highly educated mind meant to imply to me

cause I am

> STILL wondering how to go about potty-training my child, which -

if you

> recall - was the original question to which you replied with the above

> statement.

> Please enlighten a poor soul.

>

>

>

> ---------------------------------------------

>

> Some people.....

> Go to a different doctor who has a CLUE.

>

> My kids were dx'd by a pediatric neurologist at Kaiser, and then

again by

> the developmental pediatrician at Regional Center. Neither were

all that

> mind-blowing or awe-inspiring, though the first definitely feigned

more

> interest/compassion, but it didn't matter much to me. I went in

knowing

> what was the case - and I wanted it on paper so I could get my

kids what

> they needed. The only time I would have had a problem is if they

told me

> everything seemed normal when I knew it was NOT.

>

> Grace

>

>

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe

>

>

>

>

[Guest guest]

When I was in high school we had this teacher, Mrs. Pruitt. She was

the chemistry & physics teacher. She told us when she was in high

school, and this was probably the 1950's-60's, her guidance counselor

asked her what she wanted to do. I can't remember specifically what

Ms. Pruitt said, but she said the counselor said, " You can never go to

college -- you aren't smart enough and won't make it, don't put

yourself through that. " Well, Mrs. Pruitt DID go to college and DID

graduate with a chemistry/physics major and was one of our favorite

teachers. She won Tennessee's teacher of the year award at least once,

and other teacher of the year awards besides that one.

ANYONE who wants to go to college can go and success, IMHO.

Debi

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college

in diapers.....I know plenty of babies that are already graduates. At

least they complain like babies. (That is a joke)

>

> To be serious now. As one with autism, I am tired of cynical

doctors. All they think about is how to make us " fit in. " Maybe we

don't want to " fit in. " Maybe we are comfortable with being us and

want others to remove the filters from their lenses and see us as

people. I felt like the school always wanted to train me, like a

puppy dog, " Hey look what I can make the wierd kid do. " Applaud me

with loud hands when I do something stupid like write neatly, but then

ignore me or call me wierd or geek because at 12 I figure out that the

Bermuda triangle mystery lies in methane gas and is therefore no

mystery at all. I remember writing once that I wanted to win the

Nobel prize or recieve an honorary degree. My teacher gave me a " C "

on the paper because the handwriting was so sloppy with the foot note

" how can you win a Nobel prize if they can't read your handwriting? "

I would hate to tell her that 4 years later, I was accepted to Harvard

based on my essay, and despite the fact I dropped out of high school

at 16.

>

> I never attended Harvard because I was afraid to go away from home.

So many places adults were cynical and it caged me. Ignore these

statements and teach your kids that these people are wrong. People

tend to make up crazy statements when they find themselves in the

position of having to say " I don't know. "

>

>

>

> RE: How did your children get diagnosed?

>

>

> >> Her answer to potty training was, nobody goes to

> >>college in diapers. I'm trying to figure this all out one

> >>year later after diagnosis...

>

>

> What a bizarre thing to say....

>

> You should write her a thank you card and ask her.

>

> ---------------------------------------------

> Dear Dr ___________,

>

>

> Thank you for the diagnosis.

>

> On this date, you said " nobody goes to college in diapers " .

> Do you mean my child will go to college, or that she will never

need to be

> out of diapers because she won't?

>

> I'm curious what you highly educated mind meant to imply to me

cause I am

> STILL wondering how to go about potty-training my child, which -

if you

> recall - was the original question to which you replied with the above

> statement.

> Please enlighten a poor soul.

>

>

>

> ---------------------------------------------

>

> Some people.....

> Go to a different doctor who has a CLUE.

>

> My kids were dx'd by a pediatric neurologist at Kaiser, and then

again by

> the developmental pediatrician at Regional Center. Neither were

all that

> mind-blowing or awe-inspiring, though the first definitely feigned

more

> interest/compassion, but it didn't matter much to me. I went in

knowing

> what was the case - and I wanted it on paper so I could get my

kids what

> they needed. The only time I would have had a problem is if they

told me

> everything seemed normal when I knew it was NOT.

>

> Grace

>

>

>

> Autism_in_Girls-subscribe

> ------------------------

> Autism_in_Girls-unsubscribe

>

>

>

>

[Guest guest]

Yep, I feel that if your disability is a physical one, peole pity for you or

your child, but if it is an invisible, or mental disorder, they frown upon you.

Its like people need to see a physical handicap to feel sympathy or

understanding for someone. Its sad!

Aimee

kassihatestwistin wrote:

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college in

diapers.....

It's not.

Plenty of people with physical disabilities do every day. And then there's the

older non

traditional students who use depends.

It's only when a difference is invisible that people get their panties in a

twist about what kind

of undergarment you're wearing. If potty training is so difficult...ok fine.

Table it and move on

and come back later.

Dumb doctors.

Kassiane

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

Yep, I feel that if your disability is a physical one, peole pity for you or

your child, but if it is an invisible, or mental disorder, they frown upon you.

Its like people need to see a physical handicap to feel sympathy or

understanding for someone. Its sad!

Aimee

kassihatestwistin wrote:

>

> To play with speech words

>

> I am not sure it is entirely true to say that nobody goes to college in

diapers.....

It's not.

Plenty of people with physical disabilities do every day. And then there's the

older non

traditional students who use depends.

It's only when a difference is invisible that people get their panties in a

twist about what kind

of undergarment you're wearing. If potty training is so difficult...ok fine.

Table it and move on

and come back later.

Dumb doctors.

Kassiane

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe