Need some help re: SID & Asperger's

[Guest guest]

Today the autism specialist via the early childhood program in our

county has been observing our 4.5yo daughter by watching her at her

IDEA group and here at home. Today was the home visit. She did the

GARS assesment with us and also took notes as she has before. We've

previously given her oodles of reports from medical assessments and

our own notes regarding my daughter's developmental history from

birth to present.

Today we were told that this person is not yet convinced that my

daughter falls anywhere on the spectrum, but rather has sensory

issues plan and simple. This came as quite a surprise to me because

what I understand of Sensory Integration Disorder, it is about

regulating and processing sensory input and output.

SID doesn't explain to me why my daughter struggles with empathy,

lacks the ability to read and use nonverbal communication, treated

peers as if they were a piece of furniture until just this last

year, impaired pretend/fantasy play, can not read facial expressions

( " the look " is completely lost on her, but it works well with my

son, who seem wired for this world), obsessed with subjects, and the

list goes on.

She also seems to believe that because my daughter is making

wonderful progress in therapy, now notices and interacts with others

and is otherwise somewhat social that she does not fit the AS

profile. Yet I know many children on the spectrum who also make

wonderful progress, are aware of others and interact socially. I

have seen them with my own eyes!

Can someone help me understand how these things are related to

sensory integration? TIA!

Becky

[Guest guest]

>> Today we were told that this person is not yet convinced that my

> daughter falls anywhere on the spectrum, but rather has sensory

> issues plan and simple. This came as quite a surprise to me

> because what I understand of Sensory Integration Disorder, it is

> about regulating and processing sensory input and output. >

This actually may make a lot of sense...in very young children, it

can be truly difficult to tickle out diagnoses where sensory

processing dysfunction is a major component. That is because little

children don't have a base of experience upon which to build their

actions and interactions, and because they don't yet have the tools

that give them options when choosing an adaptive behavior. So, a

child can look quite " autistic " when they actually are more

dyspraxic...I've been told that is how some kids " recover " ---they

were either misdiagnosed originally, or have improved enough through

intervention that they are able to develop adequate skills to

look " unautistic " .

> SID doesn't explain to me why my daughter struggles with empathy,

> lacks the ability to read and use nonverbal communication, treated

> peers as if they were a piece of furniture until just this last

> year, impaired pretend/fantasy play, can not read facial

> expressions ( " the look " is completely lost on her, but it works

> well with my son, who seem wired for this world), obsessed with

> subjects, and the list goes on. >>

Yes it does. DSI frequently impairs a child's ability to read social

cues that most people see easily, for a number of reasons. In some

cases, the child cannot process auditory information fast enough, so

the world moves on thinking s/he is ignoring it. These kids often

give up, thinking they are " dumb " or somehow clueless, and that makes

the distance between them and the social world even greater. In some

cases, visual information is too overwhelming, and a child cannot

look at a face (esp. eyes) long enough or directly enough to pick up

nonverbal cues that would tell them how they should be responding.

Other children cannot cope with more than one system giving them

input at a time, so they have to turn off everything else and try to

piece together what is expected from them from that single system.

Imaginative play is built on a foundation of motor planning, and a

child with DSI often is missing one or more of the components needed

to plan out and perform these activities. I have a friend whose son

used to line up all his cars along the top of the couch and then run

back and forth past them. She was sure that was an indication he

was autistic...but the OT pointed out that he could not motor plan

well enough to move the cars about, so he was creating the movement

with his own body. He is now in a regular first grade

class...diagnosed with DSI.

If you think of sensory processing and integration dysfunction as a

continuum (or some models use a circle), you would thru autism, then

Asperger's, then NVLD, then DSI, it becomes easier to see how it all

fits together. I went to a workshop on autism a couple of years ago,

and the psychologist presenting stated that probably 90% or more of

the unfortunate behaviors related to autistic spectrum disorders are

sensory based. The sensory piece in all of these disorders is

significant, and the main differences in functional levels are caused

by varying degrees/areas of brain involvement, by the specific

sensory systems most impaired, and by the strategies chosen by the

person. Donna points out that " low functioning " autistics

have simply chosen more primitive coping mechanisms...and mentions

that if one chooses to deal with overload by distancing oneself from

others, it is called autism...if one distances self from self, by

becoming an information/data seeker, it is called Asperger's.

The tag doesn't matter nearly as much as whether or not your child's

specific challenges are being addressed in a manner that is helping

her improve...in my opinion. I do know that it often makes a

difference in qualifying for services, so that may be an issue--if

she will lose services she needs if/when the label comes off.

Raena

[Guest guest]

Becky,

Just because they are the Countie's autism specialist, doesn't mean they

know a hell of a lot about autism. BTDT!! Ask them to do some of the

specific tests for Aspergers if they will. I think the CARS and the GARS

both suck! If you need the titles of the other two, let me know and I'll

look them up for you. They were done by the autism school on my son who was

denied as having autism for 4 years. These tests came back very positive

for Aspergers and he now has an educational lable of ASD.

Sue

[Guest guest]

Raena,

What a wonderful post...I know looks the most autistic, and

engages in self-stimulatory behaviors, when he is overwhelmed by the

environment and cannot process anymore. Thank you for the brilliant

information.

Maggie

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[Guest guest]

> I agree with you about not being

> comfortable with them ruling out autism,

> though -- my is plenty autistic, even

> though he makes sporadic eye contact, laughs,

> talks, and has a friend over to play.

It honestly appears as if she is disqualifying my dd because she is

actually making progress in therapy, she is becoming somewhat social

and she is starting to understand a little bit of humor. We'll know

more when we have the chance to sit down and talk to her about

everything once she's made her final decision. I'm just getting my

undies in a wad over comments made at yesterday's home observation.

She hasn't officially made a decision yet.

Becky

[Guest guest]

Raena,

What you said makes a lot of sense. I just didn't see it that way

before. Now I'm so confused about what I should/n't believe, I'm

ready to just crawl in the corner and cry my eyes out.

Becky

[Guest guest]

> I think the CARS and the GARS

> both suck!

How did you come to that conclusion. I am very curious about your

experience.

> If you need the titles of the other two,

> let me know and I'll look them up for you.

Yes, please do! You can e-mail me here if you like

(becky@...) or onlist. Which ever you prefer.

TIA!

Becky

[Guest guest]

>

> Now I'm so confused about what I should/n't believe, I'm

> ready to just crawl in the corner and cry my eyes out. >

Ah, man...that wasn't my intent at all! :-( I really helped, huh?

Let me crawl off into a corner...you stay here and listen to the

other folks.

Raena

[Guest guest]

> > Now I'm so confused about what I should/n't believe, I'm

> > ready to just crawl in the corner and cry my eyes out. >

>

> Ah, man...that wasn't my intent at all! :-(

> I really helped, huh? Let me crawl off into a

> corner...you stay here and listen to the other folks.

Making *you* feel bad wasn't my intention either! ;o) I'm just so

confused right now. My gut says stick to Asperger's *with* SID all

the while this woman is saying it is *only* SID. I don't know if my

gut is right or if I'm just some neurotic mother pushing a label on

her child. I fear that if they disqualify her on the autism, she

will lose services. So the label is kind of important here.

<sigh> Of course, all these raging pregnancy hormones are not

helping any either. ;o)

Becky

[Guest guest]

I fear that if they disqualify her on the autism, she will lose services.

Becky

*******************************

Ok, I am totally new to ALL of this with the exception of what i know of

Georgas life..what kind of services? I am stuck in backwood Alabama with all of

ONE ped within an hours drive that takes are stupid insurance and so far I am

none to impressed with him..he has been seeing Rob for his pnuemonia and has

been ullerly useless so far..don't think he is going to be much help with the 3

I need a dx on..

Missy-who has no clue where to even start and worries about side effect of meds,

already been thru the adderal ride..

[Guest guest]

> I fear that if they disqualify her on

> the autism, she will lose services.

> *******************************

> Ok, I am totally new to ALL of this

> with the exception of what i know of

> Georgas life..what kind of services?

She's getting private speech-language therapy (ST) for pragmatic &

social language skills, private occupational therapy (OT) for

sensory-motor and regulatory difficulties and she attends and IDEA

(Individuals with Disabilities Education Act) Group with peers her

age and with similar needs. That one is through the school

district/county, where this particular autism " specialist " is based,

and she receives group ST, OT, and social skills help.

It's the latter I'm concerned about losing in the immediate future,

but it might just be unnecessary concern since she managed to

qualify for it on her language and social-adaptive difficulties

alone. But I also fear difficulties later on as well. Particularly

if we remain with the school district rather than homeschool (which

we are strongly considering at this point).

Also, the rumor in my area is that the medical professional that we

have been working with seem to go with what ever the school district

has to say for a dx and at the moment, they (the medical team) is

withholding a dx either way until after she's had therapy and been

seen by the school district.

Becky

[Guest guest]

> Can someone help me understand how these things are related to

> sensory integration? TIA!

>

> Becky

I'm not half as knowledgable as others on the list regarding SID, but I do

know that when a child is busy trying to sort out all that sensory input

their brain is unable to focus on other things - like reading, interacting,

or even speaking. It's all just too overwhelming for them, on top of the

sensory overload.

I agree with you about not being comfortable with them ruling out autism,

though -- my is plenty autistic, even though he makes sporadic eye

contact, laughs, talks, and has a friend over to play.

Jacquie