Re: You Tube Video Blasts Autism Speaks

[Guest guest]

It's related to the entire thread. Hello? Should we stick you in an

HB chamber?

:-)

> > >

> > > Col, why would you not want to educate the public at large? They

> vote

> > > and they spend.

> > >

> > > If they don't " get it, " they need education. We can do that.

> > >

> > > Autism's no fun when there is constipation and head-punching

> > > involved. If someone can talk, drive, and hold a job w/out

> > > assistance, more power to them.

> > >

> > > But, that is only one end of the spectrum,

> > > Carolyn

> >

>

[Guest guest]

Thanks Lenny. Compliment is appreciated.

It is important to note: that services

to hard to get no matter where you live.

Every family TACA works with is fighting

and settling for less in the amount of services.

Kids on the low end of the spectrum and

on the high end often get screwed regularly.

There is no rhyme or reason regarding

who receives services and who does not.

Typically families who follow best

practices obtain more than families who don’t.

Best practices are: Independent

assessments in all categories of need and a pitbull attorney to fight for it.

I did not say that these are full proof

nor fair.

I wish I had some magic to offer here.

We have enough on our plates.

All my best,

a Jeffs mom

From:

EOHarm [mailto:EOHarm ] On Behalf Of schaferatsprynet

Sent: Tuesday, May 29, 2007 6:42

PM

EOHarm

Subject: Re: You Tube

Video Blasts Autism Speaks

Hi Kathleen,

California

has some of the strongest treatment, cure parent advocacy

groups in the country (TACA and FEAT) and it shows. There are FEAT

board members who have kids on both ends of the spectrum, btw, so you

might imagine that the fight for services goes across the spectrum, as

it should.

Those who have kids on the low end of the spectrum who do not also

advocate for those on the rest of the spectrum are working against

their own interests. After going through treatment hell and

highwater to get our kids higher functioning, we would then just give

up half-way fighting for services? It just doesn't make sense and no

one even suggests it.

Lenny

>

> And where I used to live in Central California

it is the HFA kids

that get the better services. The coveted 40 hour a week in home

programs designed for the children to recover. When I moved to the

lost coast I had to threaten the school district with a lawsuit to

replicate services. I won, but my son is still the only child here

with an appropriate program. The lack of universal availability of

serrvices for all of the children is maddening and unfair.

> Kathleen

>

[Guest guest]

(snip) I am finding more and more

> there are some very clear distinctions between autism and

Asperger's

> and there are even some clear subdivisions within Asperger's

itself,

> leaving more than just one " type " of Asperger's.

(snip)

All I know is that what we

> incorporated to recover my son was light years from what I had to

do

> with my daughter and many other Aspie's we serve.

>

>

Sorry to be getting back to this so late , but I was wondering

if you had any thoughts on what you've seen (and alluded to above) in

light of the Nataf paper that says porphyrins for Asperger's children

were the same as controls.

Anita

[Guest guest]

Hi Anita!

It's hard to say. We have seen similarities across the board in many

areas between autism and Aspie, yet some have few, if any

corresponding physiological characteristics. As you know, each of

these individuals are as individual as their fingerprint, which makes

categorization difficult sometimes.

We have had a lower number of Aspies with definitive metal toxicity

issues, but there have been enough! I would be quite hesitant to make

the leap to Aspie's having a lower incidence of metal toxicity. Many

of the genetic SNPS, immune system issues, gut issues, and metabolic

issues are present in both autism and Aspie. Especially common

between them are the MTHFR gene mutations and methylization issues.

One theory is that Aspie is a milder form of ASD, and those with

severe metal toxicity would likely fall into the more severe end of

the spectrum, such as autism. No hard data to substanciate that, just

an opinion from one who humbly knows I have MUCH more to learn! The

more I learn, the more I realize I don't know jack!

Obviously, much more research is needed in this area.

>

> (snip) I am finding more and more

> > there are some very clear distinctions between autism and

> Asperger's

> > and there are even some clear subdivisions within Asperger's

> itself,

> > leaving more than just one " type " of Asperger's.

>

> (snip)

>

> All I know is that what we

> > incorporated to recover my son was light years from what I had to

> do

> > with my daughter and many other Aspie's we serve.

> >

> >

> Sorry to be getting back to this so late , but I was wondering

> if you had any thoughts on what you've seen (and alluded to above)

in

> light of the Nataf paper that says porphyrins for Asperger's

children

> were the same as controls.

>

> Anita

>

[Guest guest]

Hi ,

If I may, I'd like to add something to this.

In the case of my own son, I believe wholeheartedly that metals have influenced

him and

he is diagnosed with asperger's. However, the clinical picture to begin with was

pure

classic autism, but high functioning.

I noticed something wrong immediately, the first month of life. Unlike many

here, he did

not regress from perfectly developing into autism...he simply regressed as it

went along

starting at the beginning, alternating with ups and downs like a true roller

coaster ride.

He was what is referred to as the " angel " autistic...the one who never

complains, never

cried, never fussed. He was our 'bump on a log'. He slept so much at first, I

had to wake

him to feed him because I thought he might starve.

While he reached each milestone on time, he was clumsy. He spoke on time, but

barely

spoke. He had no curiousity, no imagination and did not know how to play. His

baby

elephant (a stuffed animal he adored) was named " baby elephant " because that was

what it

was. He never named it, never talked to it, never hugged it. But he could not

sleep without

it and carried around with him everywhere he went.

He barely spoke and when I put him to bed, my heart broke every night as he

shifted his

blank stare to the wall and disconnected. He couldn't follow a pointed finger,

ignored his

name, reversed his pronouns and was limp when we picked him up. He spoke every

morning like a robot. He actually sounded like a computer but would drop the

sound when

the rest of us began talking to him. He was always the first awake and always

came to our

room to tell us he was getting on the computer. He could not tell that we were

asleep so

he simply spoke to us and we woke to this sound every day.

The only time I even questioned his vaccines was after the MMR when he walked

like he

was drunk 2 days later. He seemd lost.

He was extremely hypoactive and now, looking that up, if I type " hypoactive

children' into

the search engine, everything that comes up is encephilitis. We could not always

wake him

when we tried. He would callapse in our arms and stay asleep.

His soft spot, BTW, did not close until he was almost 2 years old. Some have

suggested

that may have helped him in the long run, allowing his brain room to swell. And

yes, his

head size increased around 6 months old, then returned to normal size later.

At 3 years, he was evaluated as 15 months behind in language development and his

speaking was complicated by constant use of echolalia. His bowel movements were

loose,

mossy and definately not normal.

His regression came in potty training which he was for a year (age 3) and then

he could no

longer hold it at night (age 4 through 6). Although he began to speak more, it

worsened as

each year passed in that he was harder to understand at age 5 than at age 3. At

age 6, he

began to stutter and stammer and talked so fast that words blended. He also

spoke almost

entirely in vowels, using only the first consanant.

He also suddenly turned hyperactive from hypoactive. He has changed so many

times, I

couldn't list it all here.

Believe it or not, we were reassured every step of the way by speech therapists,

his doctors

and early intervention programs. He slowly got better over time and was finally

diagnosed

at age 8 with asperger's.

Today, he is far better than he was before but he still cannot read faces. It

was just a year

ago that we had to sit him down and explain a sleeping face. He was still having

full one

way conversations with me whenever I took a nap.

I believe he has some ability to rid himself of the metals, but it just wasn't

enough to keep

him from falling. To this day, if he drinks soda from a can, he becomes

hyperactive, jittery

and cannot be calmed by us. If that does not occur, a horrible mood swing

develops and

he is angry or upsetted.

I, unfortunately, believe that most research concerning aspies is directed at

high

functioning aspies who may have an even higher ability to rid themselves of

toxic metals.

Keep up the good work.

Col

> >

> > (snip) I am finding more and more

> > > there are some very clear distinctions between autism and

> > Asperger's

> > > and there are even some clear subdivisions within Asperger's

> > itself,

> > > leaving more than just one " type " of Asperger's.

> >

> > (snip)

> >

> > All I know is that what we

> > > incorporated to recover my son was light years from what I had to

> > do

> > > with my daughter and many other Aspie's we serve.

> > >

> > >

> > Sorry to be getting back to this so late , but I was wondering

> > if you had any thoughts on what you've seen (and alluded to above)

> in

> > light of the Nataf paper that says porphyrins for Asperger's

> children

> > were the same as controls.

> >

> > Anita

> >

>

[Guest guest]

Hi Col.

OK - here's my 2 cents and a bag of nuts!

Keep in mind, this is just an opinion at this point, but it's

beginning to develop into much more. I'm very interested in

conducting some studies to confirm these thoughts, but you know how

that goes with limited funding and all!!

There are a few core concepts I believe, after dealing with thousands

of kids with autism and Asperger's, and having one child with each

myself. These are not proven at this point, but I really don't think

that I'm wrong on this. Time will tell.

First we know that the diagnostic codes from DSM-IV are rediculously

outdated and flat out wrong for both autism and Asperger's, so I

don't put too much stock in the current dignostic system. A HUGE

portion of kid with autism and Asperger's are missed on a daily basis

with accompanying stupid statements like " He can't be autistic, look

he's affectionate! " OMG - and we wonder why we're in this current

delimma!

I also think that a HUGE portion of kids that are diagnosed as

Asperger's are done so because by the time the Dx is made, they are

much higher functioning and the developmental history is not given

enough weight in the Dx.

The more I work in this field, the more I see very definitive

differences between HFA and Asperger's. Although most will say there

is no difference between them, I strongly disagree. I work with both

in large numbers and the ways we work with HFA vs. ASP is quite

different. There are also many differences in the social aspects and

emotional stability.

There also seem to be 2 very clear cut (at least in my opinion)

divisions within Asperger's that I have never heard defined

elsewhere. I could go on for days regarding this, but I'll spare you

my soap box for tonight! The lower functioning of the two groups is

quite similar to the current ASP diagnostics, with a few updates of

course! The higher functioning of the ASP's are often misdiagnosed

with any combination of the following AD(H)D, Bi-Polar, various mood

disorders, OCD, ODD, severe anxiety disorder, sensory integration

dysfunction, and others. My daughter and I both fit this profile as

well, both being misdiagnosed as AD(H)D, Bi-Polar, anxiety disorder,

SID, and OCD. Needless to say, looking back we know that is not

correct. In my case, after 20+ years of God knows how many

psychotropic meds that made me worse, didn't work at all, or would

help for a short time and then stop working, I found that Bi-Polar

was not my main issue, ASP was! This would of course explain why none

of the mood stabilizing drugs were working!! It wasn't until I had a

severly non-verbal child with autism and began this research journey

that I figured out we were barking up the wrong tree. Now, it's

confirmed on a daily basis as I see patients mirroring our issues,

misdiagnosed as described above, and so overmedicated they can't even

function, yet still present as anything by typical and making very

little, if any, progress other than being so doped up they are not

quite as difficult to deal with.

I also find it interesting that the treatments for ASP vary greatly

from what is done with our autism patients. Many of the biomedical

interventions seem to cross over, but from a behavior, mood

modulation, emotional stability, socially appropriateness standpoint,

they are quite different and usually require a distinctively

different approach.

Anyway, it sounds very much to me like your child had autism, not

Asperger's, and should have likely been diagnosed in the HFA category

later in life. But then again, where are my credentials?!!! LOL!!

Unlike many others, I think autism progresses to HFA and Asperger's

progresses to HF Asperger's. I have yet to find a case where I think

a child with true Asperger's started out with true autism. I'm sure

it's possible, as we all know there's always an exception to any

rule. However, I have yet to see it and the more I talk to others who

have been Dx that way, the more convinced I am. The truth is in the

details, which unfortunately, seem to get overlooked a lot in these

cases!

Just my thoughts!

> > >

> > > (snip) I am finding more and more

> > > > there are some very clear distinctions between autism and

> > > Asperger's

> > > > and there are even some clear subdivisions within Asperger's

> > > itself,

> > > > leaving more than just one " type " of Asperger's.

> > >

> > > (snip)

> > >

> > > All I know is that what we

> > > > incorporated to recover my son was light years from what I

had to

> > > do

> > > > with my daughter and many other Aspie's we serve.

> > > >

> > > >

> > > Sorry to be getting back to this so late , but I was

wondering

> > > if you had any thoughts on what you've seen (and alluded to

above)

> > in

> > > light of the Nataf paper that says porphyrins for Asperger's

> > children

> > > were the same as controls.

> > >

> > > Anita

> > >

> >

>

[Guest guest]

Hi ,

I think you make some interesting observations and good points.

Yes, there are many many aspies misdiagnosed. My understanding is that ADD and

ADHD

is the most common misdiagnosis. In many ways, I believe this also has to do

with ability

and outright symptoms. My son has a friend, CLEARLY aspie and not diagnosed, and

he is

considered odd with major anxiety issues. Another in our kid's school was dx'd

with

ADHD. One of my son's teachers was the one who spotted the difference after

knowing my

son.

I also agree that mood and emotional symptoms are quite different in Aspie's.

However, I

also contribute this LARGELY to their awareness and frustration of trying to

live in a world

that makes no sense to them, where high demands are placed upon them that they

cannot

meet, and because their expectations of themselves are so high that they are

frustrated

with their own failings.

Show me a child with a disability, and I will show you a child with emotional

meltdowns.

ANY disability.

True, the AS kids are going to be even more prone to that, but this is more

because of the

constant situations of not understanding. For instance, a child who has

difficulty in

reading will be frustrated and embarrassed and feel badly if they are put in a

situation

where they have to read in front of others. In most other situations, they will

do better.

A child on the spectrum, particularly aspies, will have trouble at every turn.

Not to mention, aspie kids are often very smart. They are told they are smart

and they

believe this in their hearts. The intolerance of themselves not being able to

understand

material the other kids seem to pick up so easily is heartbreaking, embarrassing

and

downright tortorous to themselves. They cannot grasp why they are so smart yet

cannot

understand some of the simplest of things.

Add to that the basic issue with all on the spectrum of never asking for help or

telling

anyone when something is wrong, and you have yourself one depressed, emotionally

unstable kid.

For ourselves, this is a very important issue that we work with our son on more

than

almost anything. We finally have him at the point where he does ask for help, is

not

embarrassed to admit he doesn't understand something and it has done wonders for

the

emotonal outbursts. However, in some areas it remains and I suppose it may

always be

there.

Col

> > > >

> > > > (snip) I am finding more and more

> > > > > there are some very clear distinctions between autism and

> > > > Asperger's

> > > > > and there are even some clear subdivisions within Asperger's

> > > > itself,

> > > > > leaving more than just one " type " of Asperger's.

> > > >

> > > > (snip)

> > > >

> > > > All I know is that what we

> > > > > incorporated to recover my son was light years from what I

> had to

> > > > do

> > > > > with my daughter and many other Aspie's we serve.

> > > > >

> > > > >

> > > > Sorry to be getting back to this so late , but I was

> wondering

> > > > if you had any thoughts on what you've seen (and alluded to

> above)

> > > in

> > > > light of the Nataf paper that says porphyrins for Asperger's

> > > children

> > > > were the same as controls.

> > > >

> > > > Anita

> > > >

> > >

> >

>