Hi from a newbie

August 10, 2008

Hi Sheila,

I several resources in my library of books about autism relative to

developing social skills that I've used with students who are on the

spectrum as HFA/AS. If you'd like me to share the titles/authors of

some of my favorite resources with you, please feel free to send me

an e-mail.

What you've been through over the years is unimaginable. Thank you

for sharing your experiences. I hope the best for you and your

daughters... Rhonda

> > >

> > > Greetings,

> > >

> > > I'm the mother of twin girls, 18, who have had a recent

diagnosis

> > of

> > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now

that

> > we

> > > are finally being seen by our Regional Center, I would

appreciate

> > > input as to what programs might be beneficial for older

> > kids/adults.

> > > Do any of you have any experiences for this age group?

> > >

> > > Let me give you a brief bio of our romp through the medical and

> > > educational communities.

> > >

> > > There were " soft signs of autism " from infancy. The girls

didn't

> > > look in my face when nursing, didn't explore, and didn't always

> > turn

> > > towards their name or noise.

> > >

> > > When the girls were about 3.5 yrs old, we had them evaluated for

> > > autism (which turned out to be one of the worst experiences of

my

> > > life). The doctor's diagnosis was that she didn't know what the

> > > problem was but it must be something that I was doing.

> > >

> > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed

> > > PDD/NOS. She was the first one to say Prozac was the treatment

> (with

> > > no further suggestions). This was also my first round of

talking

> to

> > > the school, where the special ed. teacher said that my daughters

> > > didn't have autism, it was purely behavioral, and there would

be

> no

> > > place for school assistance. I didn't know enough to realize

that

> I

> > > should start at the top of the educational chain rather than the

> > > bottom. I think this was the first time I contacted our

regional

> > > center, but didn't make it past the receptionist. Since we

didn't

> > > want to do Prozac, and the school wouldn't help, I was stymied.

> > >

> > > Age 9 -- diagnosis by development expert of twin symbiosis.

> > >

> > > Age 15 -- diagnosis of anxiety with underlying autism by

> > psychologist

> > > (who sent us to a different psychiatrist) and tried hypnosis.

> > >

> > > Age 16 -- evaluation by psychiatrist with diagnosis of

Asperger's

> > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was

when

> > > I also really really tried to get some help from the school

> > district,

> > > but they ended up just suggesting I go to our regional center

> (and

> > > also gave extra test time). There were no transition or other

> > > services available in our district. Of course, at our regional

> > > center, I didn't get past the telephone receptionist.

> > >

> > > Age 17 -- saw a different psychiatrist who seemed to agree with

> the

> > > last one, but without giving a complete evaluation. His only

> > program,

> > > also, was for medications.

> > >

> > > age 18 -- thorough evaluation by a psychologist at California

> > > Institute of Technology because the girls signed up to be

research

> > > subjects for autism research the school is conducting. This was

> > > actually the best and most thorough evaluation they've had, and

> the

> > > diagnosis was autism (not Asperger's or PDD/NOS)

> > >

> > > age 18 -- meetings with local psychologist and physician (whom I

> > > met through TACA), both of whom said they thought a diagnosis of

> > > autism and not Asperger's would be correct and that I should be

> > seen

> > > by our regional center.

> > >

> > > age 18 -- finally fought my way past the TCRC receptionist (who

> once

> > > again said that if there were no academic difficulties, then it

> > > wasn't a TCRC problem) and was given an intake appointment.

Last

> > month

> > > we had the psychological evaluation and the diagnosis was

autism

> > > with the suggestion of TCRC assistance (with the evaluator

> > wondering

> > > why we hadn't applied before -- ARRGGHH). So, now, 15 years

after

> I

> > > first tried to get help for what I was sure from my own research

> > > would be considered something on the autism spectrum, I think we

> > > might be getting somewhere (if I continue to push and know what

to

> > > push for!) Do I regret having lost 15 years of help? YES!

> > >

> > > Your input is appreciated.

> > >

> > > Sheila

> > >

> >

>

August 10, 2008

Hello Rhonda,

Yes, I'd really appreciate hearing about good resources. Do you think

that any of them would be especially appropriate for older kids?

Thanks,

Sheila

In Autism_in_Girls , " asd_sped_teacher "

wrote:

>

> Hi Sheila,

> I several resources in my library of books about autism relative to

> developing social skills that I've used with students who are on

the

> spectrum as HFA/AS. If you'd like me to share the titles/authors

of

> some of my favorite resources with you, please feel free to send me

> an e-mail.

>

> What you've been through over the years is unimaginable. Thank you

> for sharing your experiences. I hope the best for you and your

> daughters... Rhonda

>

> > > >

> > > > Greetings,

> > > >

> > > > I'm the mother of twin girls, 18, who have had a recent

> diagnosis

> > > of

> > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now

> that

> > > we

> > > > are finally being seen by our Regional Center, I would

> appreciate

> > > > input as to what programs might be beneficial for older

> > > kids/adults.

> > > > Do any of you have any experiences for this age group?

> > > >

> > > > Let me give you a brief bio of our romp through the medical

and

> > > > educational communities.

> > > >

> > > > There were " soft signs of autism " from infancy. The girls

> didn't

> > > > look in my face when nursing, didn't explore, and didn't

always

> > > turn

> > > > towards their name or noise.

> > > >

> > > > When the girls were about 3.5 yrs old, we had them evaluated

for

> > > > autism (which turned out to be one of the worst experiences

of

> my

> > > > life). The doctor's diagnosis was that she didn't know what

the

> > > > problem was but it must be something that I was doing.

> > > >

> > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed

> > > > PDD/NOS. She was the first one to say Prozac was the

treatment

> > (with

> > > > no further suggestions). This was also my first round of

> talking

> > to

> > > > the school, where the special ed. teacher said that my

daughters

> > > > didn't have autism, it was purely behavioral, and there would

> be

> > no

> > > > place for school assistance. I didn't know enough to realize

> that

> > I

> > > > should start at the top of the educational chain rather than

the

> > > > bottom. I think this was the first time I contacted our

> regional

> > > > center, but didn't make it past the receptionist. Since we

> didn't

> > > > want to do Prozac, and the school wouldn't help, I was

stymied.

> > > >

> > > > Age 9 -- diagnosis by development expert of twin symbiosis.

> > > >

> > > > Age 15 -- diagnosis of anxiety with underlying autism by

> > > psychologist

> > > > (who sent us to a different psychiatrist) and tried hypnosis.

> > > >

> > > > Age 16 -- evaluation by psychiatrist with diagnosis of

> Asperger's

> > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was

> when

> > > > I also really really tried to get some help from the school

> > > district,

> > > > but they ended up just suggesting I go to our regional center

> > (and

> > > > also gave extra test time). There were no transition or other

> > > > services available in our district. Of course, at our

regional

> > > > center, I didn't get past the telephone receptionist.

> > > >

> > > > Age 17 -- saw a different psychiatrist who seemed to agree

with

> > the

> > > > last one, but without giving a complete evaluation. His only

> > > program,

> > > > also, was for medications.

> > > >

> > > > age 18 -- thorough evaluation by a psychologist at California

> > > > Institute of Technology because the girls signed up to be

> research

> > > > subjects for autism research the school is conducting. This

was

> > > > actually the best and most thorough evaluation they've had,

and

> > the

> > > > diagnosis was autism (not Asperger's or PDD/NOS)

> > > >

> > > > age 18 -- meetings with local psychologist and physician

(whom I

> > > > met through TACA), both of whom said they thought a diagnosis

of

> > > > autism and not Asperger's would be correct and that I should

be

> > > seen

> > > > by our regional center.

> > > >

> > > > age 18 -- finally fought my way past the TCRC receptionist

(who

> > once

> > > > again said that if there were no academic difficulties, then

it

> > > > wasn't a TCRC problem) and was given an intake appointment.

> Last

> > > month

> > > > we had the psychological evaluation and the diagnosis was

> autism

> > > > with the suggestion of TCRC assistance (with the evaluator

> > > wondering

> > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years

> after

> > I

> > > > first tried to get help for what I was sure from my own

research

> > > > would be considered something on the autism spectrum, I think

we

> > > > might be getting somewhere (if I continue to push and know

what

> to

> > > > push for!) Do I regret having lost 15 years of help? YES!

> > > >

> > > > Your input is appreciated.

> > > >

> > > > Sheila

> > > >

> > >

> >

>

August 10, 2008

Hello Rhonda,

Yes, I'd really appreciate hearing about good resources. Do you think

that any of them would be especially appropriate for older kids?

Thanks,

Sheila

In Autism_in_Girls , " asd_sped_teacher "

wrote:

>

> Hi Sheila,

> I several resources in my library of books about autism relative to

> developing social skills that I've used with students who are on

the

> spectrum as HFA/AS. If you'd like me to share the titles/authors

of

> some of my favorite resources with you, please feel free to send me

> an e-mail.

>

> What you've been through over the years is unimaginable. Thank you

> for sharing your experiences. I hope the best for you and your

> daughters... Rhonda

>

> > > >

> > > > Greetings,

> > > >

> > > > I'm the mother of twin girls, 18, who have had a recent

> diagnosis

> > > of

> > > > autism (and prior diagnoses of Asperger's and PDD/NOS). Now

> that

> > > we

> > > > are finally being seen by our Regional Center, I would

> appreciate

> > > > input as to what programs might be beneficial for older

> > > kids/adults.

> > > > Do any of you have any experiences for this age group?

> > > >

> > > > Let me give you a brief bio of our romp through the medical

and

> > > > educational communities.

> > > >

> > > > There were " soft signs of autism " from infancy. The girls

> didn't

> > > > look in my face when nursing, didn't explore, and didn't

always

> > > turn

> > > > towards their name or noise.

> > > >

> > > > When the girls were about 3.5 yrs old, we had them evaluated

for

> > > > autism (which turned out to be one of the worst experiences

of

> my

> > > > life). The doctor's diagnosis was that she didn't know what

the

> > > > problem was but it must be something that I was doing.

> > > >

> > > > At 8 yrs, one girl was seen by a psychiatrist who diagnosed

> > > > PDD/NOS. She was the first one to say Prozac was the

treatment

> > (with

> > > > no further suggestions). This was also my first round of

> talking

> > to

> > > > the school, where the special ed. teacher said that my

daughters

> > > > didn't have autism, it was purely behavioral, and there would

> be

> > no

> > > > place for school assistance. I didn't know enough to realize

> that

> > I

> > > > should start at the top of the educational chain rather than

the

> > > > bottom. I think this was the first time I contacted our

> regional

> > > > center, but didn't make it past the receptionist. Since we

> didn't

> > > > want to do Prozac, and the school wouldn't help, I was

stymied.

> > > >

> > > > Age 9 -- diagnosis by development expert of twin symbiosis.

> > > >

> > > > Age 15 -- diagnosis of anxiety with underlying autism by

> > > psychologist

> > > > (who sent us to a different psychiatrist) and tried hypnosis.

> > > >

> > > > Age 16 -- evaluation by psychiatrist with diagnosis of

> Asperger's

> > > > Syndrome or PDD/NOS. He, too, only suggested Prozac. This was

> when

> > > > I also really really tried to get some help from the school

> > > district,

> > > > but they ended up just suggesting I go to our regional center

> > (and

> > > > also gave extra test time). There were no transition or other

> > > > services available in our district. Of course, at our

regional

> > > > center, I didn't get past the telephone receptionist.

> > > >

> > > > Age 17 -- saw a different psychiatrist who seemed to agree

with

> > the

> > > > last one, but without giving a complete evaluation. His only

> > > program,

> > > > also, was for medications.

> > > >

> > > > age 18 -- thorough evaluation by a psychologist at California

> > > > Institute of Technology because the girls signed up to be

> research

> > > > subjects for autism research the school is conducting. This

was

> > > > actually the best and most thorough evaluation they've had,

and

> > the

> > > > diagnosis was autism (not Asperger's or PDD/NOS)

> > > >

> > > > age 18 -- meetings with local psychologist and physician

(whom I

> > > > met through TACA), both of whom said they thought a diagnosis

of

> > > > autism and not Asperger's would be correct and that I should

be

> > > seen

> > > > by our regional center.

> > > >

> > > > age 18 -- finally fought my way past the TCRC receptionist

(who

> > once

> > > > again said that if there were no academic difficulties, then

it

> > > > wasn't a TCRC problem) and was given an intake appointment.

> Last

> > > month

> > > > we had the psychological evaluation and the diagnosis was

> autism

> > > > with the suggestion of TCRC assistance (with the evaluator

> > > wondering

> > > > why we hadn't applied before -- ARRGGHH). So, now, 15 years

> after

> > I

> > > > first tried to get help for what I was sure from my own

research

> > > > would be considered something on the autism spectrum, I think

we

> > > > might be getting somewhere (if I continue to push and know

what

> to

> > > > push for!) Do I regret having lost 15 years of help? YES!

> > > >

> > > > Your input is appreciated.

> > > >

> > > > Sheila

> > > >

> > >

> >

>

August 10, 2008

Hi Sheila,

I think Koegel PRT would definitely benefit older kids. We pretty

much incorporated it in to everyday life around here. Sorry you had

such a frustrating first experience the first time with UCSB.

If you get a good SC, like the past 3 I've had, you don't necessarily

need to be prepared to fight. My SC practically begs me to take

services and money from them. Last year they had extra year-end

funds at the close of the fiscal year and I got $1000 for a ton of

sensory equipment for my house. I've never been given a hard time

about anything I've wanted. Of course, my daughter qualifies for

everything. There has never been any question about her diagnosis.

If you run down the DSM IV for autistic disorder, she exhibits every

single one of the characteristics and behaviors. Every one. She is

the poster child for autism.

Who are these " experts " who claimed drugging your kids is the only

treatment for autism? I can't tell you how angry this makes me. It

just turns my stomach. No one even recommended ANY typed of

behavioral therapy? Unreal.

But you're right....better late than never, and I truly wish you the

very best in this.

> Hi ,

> I've called UCSB and the receptionist said that they might be able to

> help us after we've been formally accepted by TCRC. TCRC said that

> they have now put us on UCSB's waiting list. I'm hoping that the

> Koegel program will be able to benefit older kids. When I called the

> Koegel center when I first suspected autism years ago, they didn't

> even return my calls and I supposed it was because we didn't have a

> formal diagnosis of autism at the time so I became very frustrated

> with UCSB.

>

> As for a SC, we haven't been assigned anyone, yet. Others have told

> me that, basically, I'd better have a good idea of what we need and

> want and then be prepared to fight for it. Sooooo, I need to find

> out if there are any others who have ever entered into the system at

> this late date and what they did that was beneficial (and what wasn't

> for them and why).

>

> It wasn't until a couple of years ago that I discovered our local on-

> line autism group and found out that all the experts I had consulted

> were wrong about Prozac and medications being the ONLY possible

> treatment (since the Koegel institute was only for confirmed autism

> and at the time we had PDD/NOS diagnosis and they weren't interested

> in us). At any rate, better late than never....

>

> Sheila

>

August 10, 2008