Re: How old and why...when was your child diagnosed?

July 1, 2006

In a message dated 7/2/2006 12:37:39 AM Eastern Daylight Time,

heres2pyrs@... writes:

Wondering how all of you decided to get your child evaluated and at

what age, and if someone recommended it to you.

With my older son (diagnosed Asperger's)...we were having trouble

disciplining him and getting him to follow directions. He could tell us every

capital

of the African countries but couldn't tie his shoes and couldn't follow 2

step directions. I had worked at a children's psychiatric hospital before I

had

kids and knew one of the psychologist who had branched off into private

practice. He knew immediately by our observations and his own that it was

Asperger's. He is one of the leading experts in Asperger's/Autism in New

England

and is also well known because of his research and training in

Neurofeedback. Then with younger son (diagnosed PDD)...we knew right away

because of

sensory sensitivity and severe anxiety. Pam

July 2, 2006

Are you ready for a long, drawn out answer? LOL. Here's our story,

incl the how, when & why:

Behavioral problems primarily since he could control the movements of

his arms. Head banging, hitting us, biting, sensory issues that we

didn't recognize, and the list goes on. My son was in a preschool

that has EI, but no one every identified a problem, even when I

mentioned he was a visual learner, had a bad memory, and I was

concerned about auditory memory. I didn't know anything about Child

Study Teams, etc. No one told me how to go about getting him

evaluated, and I just " ass-u-med " that the school would take care of

it if/when they saw a problem because they are experts and would know

what to do. Talk about naieve!!!! :-)

I wanted him evaluated because I knew he had ODD symptoms, and needed

help with behavior mgmt. He was dx'd with severe ADHD (along with the

ODD) by a psychiatrist at 3 (after 10 min in a small room with

absolutely nothing for him to do, no interaction with him, and being

expected to do nothing while the Dr talked to his parents). We were

told it was the most severe case of ADHD he'd ever seen and we needed

to medicate him immediately or suffere the consequences (Conduct

Disorder, etc). Fortunately, I knew he was full of ____, and while

the ADHD dx did turn out to be accurate, it was not appropriate to

give him meds at that age, and he didn't do a real evaluation. He saw

that my son was trying to get my attn (running into us while we sat on

the couch) and that was unacceptable to him. I had been told that

he'd be interacting with my son, and I was also told he'd be doing a

psychological and psychiatric eval (I wasn't told exactly what his

credentials were in advance of the appt), but I had been misinformed.

At almost 4, we had a psychological eval and neuro eval at CHOP

(Children's Hosp of Phila). Both were to r/o ADHD, and they both saw

hyperactivity but didn't think it was appropriate to dx ADHD at that

point as he could attend to certain things (of interest). The Dev Ped

that saw him also didn't think it was an appropriate dx at the time,

but everyone agreed on the ODD & saw behavioral problems.

Kindergarten (2003-2004): We continued to have behavioral problems,

and other issues that I now know were AS symptoms. He was having big

problems with his homework and refused to do it most of the time. At

that point, Dev Ped said we needed the school to do a

psychoeducational eval to r/o giftedness and LD. They refused to do

so. Their reason: In NJ they don't have to listen to the Dr, and

don't have to do anything at all unless they feel it's necessary.

They also said they don't have a gifted program until 3rd grade, so

they wouldn't test for that. My daughter was having severe health

problems that I had to focus on, so I decided I would continue to

pursue in the fall, as the school year was almost over.

1st Grade (2004-2005): Same teacher as Kindergarten, which was a big

problem. She should not still be teaching, but has tenure, so they

haven't been able to fire her, only transfer her from school to

school. Back to the CST, but this time with a mobile therapist

(psychologist) that we had just been assigned through the NJ Child

Behavioral Health Program. Teacher said " I don't even know why we're

here. There's nothing wrong with him. " I reiterated problems with

homework, behavioral problems, socialization problems, etc. Teacher

denied any problems. Backtracked on the answers she gave on the ADHD

forms she completed. They indicated big problems. She said there was

" no room to elaborate " , which was not a valid answer. She filled out

another and answers were completely different - no problems with

anything. Mobile therapist had observed the class for 2 hrs and

confirmed socialization problems at school. Confirmed behavioral

problems at home, but didn't witness at school. Confirmed problems

doing homework (took hours in 1st grade). Already had OT eval at

CHOP, and was getting therapy at that point. At that point, he was

other health impaired due to a feeding tube, so he was eligible for at

least a 504 plan. They agreed to OT & speech eval at my insistance.

OT saw all problems I mentioned, said he needed all of the help he

could get & said teacher refused to cooperate with eval & didn't want

her to look at DS's work. OT didn't believe teacher didn't see the

problems - they were obvious and it was a very difficult eval due to

his behavior and other issues. Speech - put off anything until the

following year.

2nd grade - new teacher. Saw some problems, but not initially. ADHD

meds started, which helped considerably, but not completely. Speech

eval at CHOP confirmed rare dysfluency (palilalia) and problem with

vowel controlled " r " sounds. CST agreed to psychoeducational eval.

Finally got confirmation he was having problems attending, socializing

with peers, writing, doing work, he was a perfectionist, had anxiety,

etc, etc, etc. Got OT and speech.

End of this year, I realized some of his continued problems (incl.

writtten expression problems, understanding simple directions, the

meltdowns & belief in an " alternate reality " about what led to the

meltdown) aren't explained away by ADHD. Dev Ped had mentioned

possible ASD (mild) a few times in passing, but never elaborated, and

I thought autism = " Rain Man " & low IQ's, so I didn't think that was

possible. Now I saw more problems, so I asked for a clarification. I

started to investigate while she was on a 3 wk vacation. Ruled out

other PDDs, but everything ruled in Aspergers and I finally realize

why he was doing most of the things he was doing. It explained so

much more than I ever expected. Did more research, and s/w his

psychologist about it. He had no experience with AS but he agreed

that he completely fit the criteria. Suggested I f/u at CHOP. I

called the speech pathol at CHOP that did the eval to asl if she ever

saw his dysfluency with AS. She told me she'd seen symptoms of AS,

and felt he has AS, but couldn't dx it, so she wrote up her report as

if he'd already been dx'd, so it would raise red flags to Drs that

read it. She said his dysfluency (gave me the name Palilalia at that

point) was rare, but frequently seen with Aspergers!!!!! She s/w the

head of the stuttering clinic about it and he agreed. She said she'd

e-mail the Dev Ped about everything she saw, the link betw. palilalia

& AS, etc, and forward her another copy of her eval. I faxed info to

the Dev Ped while she was away, incl all symptoms that he's been

displaying (even those I hadn't thought to mention before), info rec'd

from speech pathologist, etc. She called upon her return and

apologized for not dxing him. Said she " felt humbled " and was happy

I'd been researching it. I completed an ASDS form and faxed it to

her. Agreed it was AS (she had all reports and past observations to

back it up). Got us squeezed in for ADOS testing at the regional

autism center. Had an ADOS test last week, and the evaluator didn't

see a real problem, but said the Dr would evaluate the video tape.

She didn't notice the palilalia (which was minimal, but present), and

since he is more adept at speaking with adults, she didn't realize he

had any socialization problems. He also told her he has lots of

friends, which isn't true. He was spinning, acting out, hitting his

head and saying " eyeballs " all of the time, but she thought that was

more behavioral because he seemed to be looking for a reaction (which

can throw you off if you don't know that's something he always seems

to be doing, even when he isn't).

My follow up visit with Dev Ped is coming up on Wed. She wants to go

over what we need in the IEP for next year. So, he is now 8 yrs old

and is getting the dx now. I guess this post was the equivalent of

" Gone With the Wind " , but I'm a bit detail oriented when I write. :-)

Debbie (in NJ)

CJ (8) - AS, anxiety, ADHD, prior ODD dx but much better, and so on.

Also has Eosinophilic Esophagitis (EE) - Reacts to most food

so he's G-tube fed a special elemental formula w/ no intact proteins.

(4) - currently healthy (had prior GI problems that seem to

have resolved), and seems to be " normal " in that she doesn't have

symptoms of any PDD. She's also very intelligent. She does have some

problems attending (ery possibly ADHD, but mild), and is definitely

affected by her brother's behavior. She does seem to model his

behavior at times as well, because he is her big brother after all.

July 2, 2006

Corey was first evaluated at 3 by ignorant people. Children services got

involved because neighbors kept calling cops because all he did was scream all

day long, nothing shut him up, even though i tried to explain that is how he is.

Hospitalized at 3 and remanded to state custody. Diagnosised with OCD, Reactive

attachment disorder, adhd (extremely severe). Told it was parenting issue and we

had not bonded when he was infant (what crap). Of course not whenever you

touched him he screamed. One year, five foster homes, and 17 hospitalizations a

smart judge decided that i was the only one capable of raising this child. I

think they ran out of places to put him. They even tried a state hospital but

because they had never had one so young they put him on the teenage girls wing.

Talk about giving him an education. 10 mentally ill teenage girls and 1 4 yr old

boy. That lasted a week. We finally got diagnosis at age 6. They other ones were

taken out of equation expect for ADHD. We

have currently added bipolar to the list. Dr. said it is because of puberty

that we are now seeing it. Fortunately i have the Head of the childrens psych

unit at our childrens hospital as my son's dr and he is well versed in aspies

and when he goes on vaction or leave he will only let another dr with aspie

experience work with my son and if those nosey state people come around he has

my back.

heres2pyrs <heres2pyrs@...> wrote: First of all, thanks for the

warm welcome in my " newbie " thread!

Someone had mentioned that we got our son's diagnosis early on and

that our services must be good...NOT!!! LOL

has been getting speech and OT with EI since the age of 2.

He's better now, but had lots of sensory issues, esp. with his hands

(touching play dough, fuzz balls, etc. would give him the willies)

and his mouth-something we still struggle with as far as trying new

foods (he gags/vomits if something doesn't 'agree' with his tongue).

His OT diagnosed him with SPD (sensory processing disorder) and that

was it. We brushed him and did desensitizing and deep pressure

activities and slowly he improved. The only thing that didn't

improve was his eating/tolerating new foods. I had read on another

forum about Neurodevelopmental peds. and figured it wouldn't hurt to

get him an appt. and get his sensory stuff checked out. We walked

out of there with a dx of PDD/NOS which was later changed to

Asperger's by a psychologist we had to see in order to get services

thru the county.

So...in the 1 1/2 years that he was with EI, home based and in

school, nobody ever thought to mention that he MIGHT have something

deeper than SPD. We still wouldn't know if I hadn't done a little

reading on the internet.

Wondering how all of you decided to get your child evaluated and at

what age, and if someone recommended it to you.

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

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July 2, 2006

-

My son was always kind of different and immature. WE waited until age

6 to start him in kindergarten. He had trouble staying focused in

school and they thought he might be ADD. His doc did some in office

testing and put him on Ritalin in second grade. By 4th grade he had

seriously declined - refusing to do ANY school work - pickint at his

hands so bad he had multiple sores. About this time I read an article

about AS, and it fit him so well. I took him to Childrens Hospital

Neuro Psych for testings. They gave a diagnosis of AS and some

psychosis. He was at that time almost 11.

>

> First of all, thanks for the warm welcome in my " newbie " thread!

>

> Someone had mentioned that we got our son's diagnosis early on and

> that our services must be good...NOT!!! LOL

>

> has been getting speech and OT with EI since the age of 2.

> He's better now, but had lots of sensory issues, esp. with his hands

> (touching play dough, fuzz balls, etc. would give him the willies)

> and his mouth-something we still struggle with as far as trying new

> foods (he gags/vomits if something doesn't 'agree' with his tongue).

> His OT diagnosed him with SPD (sensory processing disorder) and that

> was it. We brushed him and did desensitizing and deep pressure

> activities and slowly he improved. The only thing that didn't

> improve was his eating/tolerating new foods. I had read on another

> forum about Neurodevelopmental peds. and figured it wouldn't hurt to

> get him an appt. and get his sensory stuff checked out. We walked

> out of there with a dx of PDD/NOS which was later changed to

> Asperger's by a psychologist we had to see in order to get services

> thru the county.

>

> So...in the 1 1/2 years that he was with EI, home based and in

> school, nobody ever thought to mention that he MIGHT have something

> deeper than SPD. We still wouldn't know if I hadn't done a little

> reading on the internet.

>

> Wondering how all of you decided to get your child evaluated and at

> what age, and if someone recommended it to you.

>

July 2, 2006

Our son only got an official diagnosis of HFA earlier this year. He is will be

6 in August. But he has been in early intervention since he was 18 months old

for sensory issues and because of his severe speech problems. ASD had been

throwna round at certain times and an assessment of ASD was carried out when he

was three but he was dx PDD - NOS. The team that originally assessed him had

only just started and he was their first client. They recommend that we test

him again prior to starting school. This time around though we went to an

expert on ASD. And she dx HFA. having a dx just gave us an answer. We didn't

change anything that we were doing because we were already using all the

strategies for ASD.

Beck

Re: ( ) How old and why...when was your child

diagnosed?

In a message dated 7/2/2006 12:37:39 AM Eastern Daylight Time,

heres2pyrs@... writes:

Wondering how all of you decided to get your child evaluated and at

what age, and if someone recommended it to you.

With my older son (diagnosed Asperger's)...we were having trouble

disciplining him and getting him to follow directions. He could tell us every

capital

of the African countries but couldn't tie his shoes and couldn't follow 2

step directions. I had worked at a children's psychiatric hospital before I

had

kids and knew one of the psychologist who had branched off into private

practice. He knew immediately by our observations and his own that it was

Asperger's. He is one of the leading experts in Asperger's/Autism in New

England

and is also well known because of his research and training in

Neurofeedback. Then with younger son (diagnosed PDD)...we knew right away

because of

sensory sensitivity and severe anxiety. Pam

July 3, 2006

My son was just diagnosed in January with SPD and then in March with

PDD-NOS. The teachers at his preschool felt that he wasn't on the

same level as his classmates in regards to socialization and had

seen a lot of " quirky " behavior from him in school (low frustration

tolerance, playing alone all the time and with the same toys,

wearing the same clothes all the time, etc.) and suggested we have

an evaluation done through BOCES. That was done in early January

and he got the diagnosis for sensory processing (specifically

tactile and auditory defensiveness as well as some auditory

discrimination issues) and they said he had significant

social/emotional delays. It was recommended by a few people that we

have a private eval done as well to make sure the school district

wasn't missing anything and in March he was diagnosed PDD-NOS.

Everyone we have spoken with who has experience in this sort of

thing says we're really looking at AS with him. The evaluator even

put in his report that he is " borderline AS " but was reluctant to

make that his official diagnosis because he was only 4 at the time

and they like to wait until the kids have been in school for a year

or two before giving that particular diagnosis. We are lucky in

that he is pretty high functioning - his main problems are the

frustration/anger issues and the serious lack of social skills. He

also has some echolalia going on. He's a very smart kid though and

we're very fortunate in the support we've gotten from the school

system so far. He will be starting kindergarten in the fall and

will be in a regular ed classroom with a special ed teacher, OT and

speech support.

Ann

July 7, 2006

What an awful way to get to a dx! It’s back to that “refrigerator Mother”

theory – what a horrible experience! I’m glad you finally found the right

people to help you and Corey!

Roxanna ôô

“If you’ve told a child a thousand times and he still does not understand,

then it is not the child who is the slow learner.”

Walter Barbee

_____

From:

[mailto: ] On Behalf Of Wilke

Sent: Sunday, July 02, 2006 10:01 AM

Subject: Re: ( ) How old and why...when was your child

diagnosed?

Corey was first evaluated at 3 by ignorant people. Children services got

involved because neighbors kept calling cops because all he did was scream

all day long, nothing shut him up, even though i tried to explain that is

how he is. Hospitalized at 3 and remanded to state custody. Diagnosised with

OCD, Reactive attachment disorder, adhd (extremely severe). Told it was

parenting issue and we had not bonded when he was infant (what crap). Of

course not whenever you touched him he screamed. One year, five foster

homes, and 17 hospitalizations a smart judge decided that i was the only one

capable of raising this child. I think they ran out of places to put him.

They even tried a state hospital but because they had never had one so young

they put him on the teenage girls wing. Talk about giving him an education.

10 mentally ill teenage girls and 1 4 yr old boy. That lasted a week. We

finally got diagnosis at age 6. They other ones were taken out of equation

expect for ADHD. We

have currently added bipolar to the list. Dr. said it is because of puberty

that we are now seeing it. Fortunately i have the Head of the childrens

psych unit at our childrens hospital as my son's dr and he is well versed in

aspies and when he goes on vaction or leave he will only let another dr with

aspie experience work with my son and if those nosey state people come

around he has my back.

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July 7, 2006

I think they don’t dx more because they can’t. They can really only tell

you about their own expertise. I know the ST is the one who mentioned

autism to us with our second ds with HFA. I was busy floating down denial

with him and then she noted a number of behaviors that told her he had

autism. When I told the dev. Doctor, he got a bit ticked off that she said

what she did. She wasn’t supposed to do that, I guess.

With our oldest with HFA, we knew immediately he had something going on but

it was not until he was 3 ½ when we got the dx. This is because nobody ever

took me seriously and when he was around other people, he went into his

shell. With the younger, we knew when the ST smacked me into reality. From

that point on, I knew and took action accordingly. He was eventually dx’d

with autism but not until he was 3 yo simply because our doc at the time

preferred to wait until that age. But the dx was simply a formality at that

point.

Roxanna ôô

“If you’ve told a child a thousand times and he still does not understand,

then it is not the child who is the slow learner.”

Walter Barbee

_____

From:

[mailto: ] On Behalf Of heres2pyrs

Sent: Saturday, July 01, 2006 10:41 PM

Subject: ( ) How old and why...when was your child diagnosed?

First of all, thanks for the warm welcome in my " newbie " thread!

Someone had mentioned that we got our son's diagnosis early on and

that our services must be good...NOT!!-! LOL