Re: You Tube Video Blasts Autism Speaks

May 29, 2007

> To do effective triage, we need labels that fit the various degrees of

> impairment. I think it is common short-hand to refer to anyone on

> the spectrum as " autistic " . For most of the time I don't have a

> problem with that. However, where I do have a problem is when some

> people try to redefine all of autism as Aspergers-High-Functioning,

> intentionally trying to politically disappear the severely afflicted

> like my son and like the children on the AS video.

I agree completely with this Lenny.

But, let us just not get lost in the idea that people trying to make the

severely affected disappear in advocasy are representatives of higher

functioning children who also need help on the higher end and who are

autistic as well. We cannot fight the idiots by discounting all high

functioning autistics as 'not being autistic' because they do not

represent children like yours.

I completely agree that they do not represent kids like yours, but they

also don't represent kids like mine. My kid didn't choose this. It isn't just

a way of life for him. He was 6 years old when he outright asked me to help

him. Contrary to what they say, he wants help, needs help and does not

want to be 'left alone'.

But, there are kids with asperger's who are very disabled. In our school

district, there are two autism classes in 2 of the 5 elementary schools. One

is for more severely affected and the other is for higher functioning and it

is made up of almost entirely asperger's kids. They are not mainstreamed,

they are severe and not capable of functioning on a 'normal' level.

In the middle school, there is one autism classroom for those that 'graduated'

to middle school. The fifth graders are brought into their class to meet them

as they are partially mainstreamed by 6th grade with the other kids. They have

aids with them and attend one or some classes like gym, math or music, etc.

Some of these kids are pure autism and do not speak at all. Others have

asperger's and are not much different except that they have words.

We have the first ever spectrum charter school for autistic children and we

have private schools for autistic children, one in which most diagnosed with

asperger's attend because they can't function in regular schools.

Some of these kids will never sit on a board or wear a suit to work, either.

Some may never work at all.

Asperger's, in the media, has been depicted as quirky kids who grow up

and do well. But there are many who will never marry, who will never have

a friend and who will forever require supervision and assistance.

Yes, it is different. No doubt and I am not trying to compare them. I am

trying to emphasize that any kid with asperger's who gets along just fine

and didn't even get a diagnosis until they were adults is quite different than

those who are disabled.

I am not trying to imply or say that they are the same as classic autism. But

they do have autism. The defining diagnoses within the spectrum is to clarify

how affected they are with autism, not whether or not they have autism.

We should not confuse the defining differences of severity as a definition of

autism altogether.

Col

May 29, 2007

In PA, the only statistical counting that I am aware of is through the board of

education

and it is very incomplete, as are all educational records. The reason for this

is that they do

not count homeschooled children, children in private schools and, often, high

functioning

autism and asperger's gets dropped from the rolls if they are not specifically

receiving

autism support in the autism classrooms.

As far as services, which is the original post, is right. The state

provides all autism

support services for any child on the spectrum no matter what the specific level

of

severity. Children with asperger's, PDD and classic autism all qualify for wrap

around

services with ABA, Behavioral and Family support, speech and occupational

therapy

services through a provider, counseling, autism camps and social activities and

so on.

They are all approved through medicare to pay for outside services and even the

highest

functioning of children qualify for a ton of services.

Col

> > > > >

> > > > > I've seen kids dx'd with PDD-NOS that are worse (in terms of

> > symptoms)

> > > > > than kids dx'd with classic autism.

> > > > >

> > > > > At Children's Hospital they'll give PDD-NOS if the psychologist

> > feels

> > > > > the parent can't " handle " hearing autism.

> > > > >

> > > > > Discounting any child because of " severity " or the label they

> > stick to

> > > > > him/her is ridiculous.

> > > > >

> > > >

> > > > In some states a dx of PDD-NOS instead of autism will screw that

> > kid

> > > > out of a lot of services made available to the clinically

> > disabled.

> > > > That psychologist is doing no one a favor with such mislabeling,

> > > > except for perhaps the state disabilities agency who then would

> > have

> > > > one less " mouth to feed. "

> > > >

> > > > To do effective triage, we need labels that fit the various

> > degrees of

> > > > impairment. I think it is common short-hand to refer to anyone

> > on

> > > > the spectrum as " autistic " . For most of the time I don't have a

> > > > problem with that. However, where I do have a problem is when

> > some

> > > > people try to redefine all of autism as Aspergers-High-

> > Functioning,

> > > > intentionally trying to politically disappear the severely

> > afflicted

> > > > like my son and like the children on the AS video.

> > > >

> > > > For example, some of the psuedo-advocate autistics are demanding

> > of

> > > > AS, why doesn't AS have any autistic people on their boards or

> > their

> > > > administration? My son gets disappeared in this. My son, who

> > does

> > > > not functionally read or write at age 18 will not be a corporate

> > > > executive or be on any board as anything but a figurehead. These

> > > > " advocates " , with their narrow redefintion of autism, cannot and

> > do

> > > > not represent the autistic people like my son on the low end of

> > the

> > > > spectrum. What is the difference? These people are not clinically

> > > > disabled, my son is. They have no business pretending to

> > represent

> > > > the disabled. And let me add again, " disability " is not a soft

> > > > literary term that can mean anything like in a poem. It has a

> > > > specific definition which includes being at high risk without

> > profound

> > > > intervention and care. The legal definition of developmental

> > > > impairment to the point of disablity is measurable. (DSM -IV)

> > > >

> > > > > Discounting any child because of " severity " or the label they

> > stick

> > > > to him/her is ridiculous.

> > > >

> > > > When one tries to equate Aspergers with clinical autism, by using

> > the

> > > > same word for both in a political context, it is the severely

> > disabled

> > > > who get screwed by the misrepresentation, not the " high

> > functioning " .

> > > > My definition of " autism " does not pretend one end of the

> > spectrum

> > > > doesn't exist for political expediency. It does for the NDers. To

> > > > advocate for Aspergers, we do not have to assert that they are the

> > > > same as the clinically disabled to do so. Likewise, to advocate

> > for

> > > > the clinically disabled autistics, we do not need to " discount "

> > those

> > > > on the high end of the spectrum.

> > > >

> > > > I haven't heard anyone say we should downplay the needs of those

> > > > higher functioning, but only to acknowledge that they ARE higher

> > > > functioning and subsequently require a different level of care

> > than

> > > > the clinically disabled. And more importantly, that those on the

> > > > higher end of the spectrum have a significantly different reality

> > than

> > > > those who are measurably clinically disabled. They are far from

> > being

> > > > indistinquishably " autistic " . The one-size-label " autistic " does

> > not

> > > > fit all. It's ok for shorthand, but not for politics. And it is

> > not ok

> > > > when trying to make the clincially disabled politically disappear.

> > > >

> > > > Lenny

> > > >

> > >

> >

>

May 29, 2007

>

> If your state's ASD population is based on educational label rather

> then actual professional diagnosis, then Pennsylvania's ASD is not

> California's ASD and who knows what measuring stick PA uses, that is

> the problem.

>

PA does not use an educational label. They do use professional diagnoses as to

what

determines services.

California is the only state actually counting autism diagnoses, and contrary to

what most

may think, it is not just classic autism. They are including asperger's and PDD

if the

diagnosis is severe enough.

What was saying is that in a professional diagnosis, the diagnosis of

autism is

subjective. Rarely does a psychologist strictly follow the diagnostic criteria

and that is in

any state. Parents fill out forms that answers questions about autism symptoms,

they

evaluate a child based on this information, as well as their own examination and

sometimes school officials evaluations as symptoms can be more severe or less in

a school

setting.

They do not always keep to a strict 'if the child had language on time, they

must have

asperger's' criteria. If they did, some regressive autism kids would not fit

classic autism.

Children who evolve into a picture that looks more like asperger's who started

out more

like classic autism, get a dx of aspergers because it 'fits' better at the time,

rather than

what the criteria says.

But services in schools and through the state are only determined by

professional

diagnosis, usually at the child development center at children's hospital.

Col

May 29, 2007

What I am observing locally is not that every kid with a quirk is

getting a diagnosis, instead the overwhelming numbers have now had

the opposite affect. Severely affected kids are now being left out,

not given a diagnosis. Kids are getting a medical diagnosis and the

schools are refusing to give an educational one, so they do not have

to provide services.

One family here, their child was diagnosed in the 1% in language use

and understanding and he was denied an educational diagnosis and was

given no services at all. The parents are going to have to fight a

legal battle to get him services.

I now see kids far worse off than my child was, who are getting much

milder diagnosis. It appears the sheer numbers are forcing a re-

evaluation of the severity of some kids.

And we have always seen those doctors not wanting to devastate

parents with a diagnosis of Autism so they just tell them PDD-NOS.

A recipe for disaster for many as they assume it is NOT Autism, and

so do not act aggressively, perhaps with kids most able to recover

or vastly improve.

I now meet families who say they were told their child has

Aspergers, yet as Lenny stated the child is unable to attend regular

classes and are really extremely low functioning. I always cringe

when a parent throws out PDD-NOS or Aspergers as a " Badge of Honor " ,

as if they are not really autistic, yet they are far more autistic

and lower functioning than some diagnosed with Autism out right.

We also must remember that much of Autism diagnosis is subjective,

to be interpreted by individual professionals.

So it isn't who is autistic, or not autistic, who is high

functioning or low functioning, or who diagnosed them or refused

to. What it is all about is an entire generation of very sick kids,

all sick to some degree or another, and none of them asked for it,

or deserved this. I believe our best friends here have a vaccine

damaged son. He is not autistic in any way, in fact he is

brilliant, mature, thoughtful, but his parents are on edge every

single day of his life as even one peanut, or the dust of one peanut

could end his life in a matter of seconds, not minutes. It is not

our fears or our path, but it is a dangerous and fearful one all the

same. By third grade they have already dealt with four life and

death situations due to peoples' carelessness at school.

I have to say I would not want to walk in their shoes either. I

look at the " drug cubbies " at the school and see the insulin,

anaphylactic kits, inhalers, and the myriad of anti-depressants,

anti-psychotics. I also remember our ABA consultant after a day at

school with my daughter, looking at me and saying, " there are at

least five children in her class with far more serious problems than

Keely has and they are completely undiagnosed with anything at all " .

I saw a first grader not long ago, very autistic, jumping

constantly, flapping, completely unaware of his surroundings. I

leaned over to the principal and said, " is that the first grader you

told me about that has autism " . He shot back a shocked look at me

and said, " no, he doesn't have autism " ! I shot back, " oh yes he

does " !

I really don't care what they are called. My child with full blown

autism was in much better shape with me at her side than some lesser

affected children whose parents did nothing but pawn them off on the

school for a break in their day. For many of these kids it's not

what their diagnosis was or is, but what is being done to help them

improve, heal, get better, function better, learn better, live a

better and fuller life. If there is one thing I have learned in

this journey, DIAGNOSIS IS NOT A DETERMINER OF OUTCOME! So labels

have little to do with each child and families journeys.

So, worry less about what all these children are called or labeled

and worry more about what is happening to ALL of our Children, what

is being done for those already damaged, what are we doing to stop

the damage.

Kendra

>

> > To do effective triage, we need labels that fit the various

degrees of

> > impairment. I think it is common short-hand to refer to anyone

on

> > the spectrum as " autistic " . For most of the time I don't have a

> > problem with that. However, where I do have a problem is when

some

> > people try to redefine all of autism as Aspergers-High-

Functioning,

> > intentionally trying to politically disappear the severely

afflicted

> > like my son and like the children on the AS video.

>

> I agree completely with this Lenny.

>

> But, let us just not get lost in the idea that people trying to

make the

> severely affected disappear in advocasy are representatives of

higher

> functioning children who also need help on the higher end and who

are

> autistic as well. We cannot fight the idiots by discounting all

high

> functioning autistics as 'not being autistic' because they do not

> represent children like yours.

>

> I completely agree that they do not represent kids like yours, but

they

> also don't represent kids like mine. My kid didn't choose this. It

isn't just

> a way of life for him. He was 6 years old when he outright asked

me to help

> him. Contrary to what they say, he wants help, needs help and does

not

> want to be 'left alone'.

>

> But, there are kids with asperger's who are very disabled. In our

school

> district, there are two autism classes in 2 of the 5 elementary

schools. One

> is for more severely affected and the other is for higher

functioning and it

> is made up of almost entirely asperger's kids. They are not

mainstreamed,

> they are severe and not capable of functioning on a 'normal' level.

>

> In the middle school, there is one autism classroom for those

that 'graduated'

> to middle school. The fifth graders are brought into their class

to meet them

> as they are partially mainstreamed by 6th grade with the other

kids. They have

> aids with them and attend one or some classes like gym, math or

music, etc.

> Some of these kids are pure autism and do not speak at all. Others

have

> asperger's and are not much different except that they have words.

>

> We have the first ever spectrum charter school for autistic

children and we

> have private schools for autistic children, one in which most

diagnosed with

> asperger's attend because they can't function in regular schools.

>

> Some of these kids will never sit on a board or wear a suit to

work, either.

> Some may never work at all.

>

> Asperger's, in the media, has been depicted as quirky kids who

grow up

> and do well. But there are many who will never marry, who will

never have

> a friend and who will forever require supervision and assistance.

>

> Yes, it is different. No doubt and I am not trying to compare

them. I am

> trying to emphasize that any kid with asperger's who gets along

just fine

> and didn't even get a diagnosis until they were adults is quite

different than

> those who are disabled.

>

> I am not trying to imply or say that they are the same as classic

autism. But

> they do have autism. The defining diagnoses within the spectrum is

to clarify

> how affected they are with autism, not whether or not they have

autism.

>

> We should not confuse the defining differences of severity as a

definition of

> autism altogether.

>

> Col

>

May 29, 2007

Col, It is much more important that the public understands this than

the politicians. While we've had some success on the state level,

only a few politicians at the national level are trying to do the

right thing for our kids. Since those pol's are owned by Pharma, it

would take a massive swing in public opinion to pressure the rest to

do the right thing.

Those of us here are only about one-half of one percent of parents

of affected children and roughly .005% of the population. That

doesn't translate into enough votes to bother any politician.

> > > >>

> > > > I don't believe this conversation is about who is " suffering "

> > more.

> > > > I think it is about what words mean. ASD is not equal to

> > autism.

> > > > One of the problems with saying a kid with aspergers is

autistic,

> > or

> > > > a kid with ADHD is autistic, is that eventually you have

people

> > > > saying that Einstein was autistic, and what the hell are

these

> > > > parents complaining about.

> > >

> > > I cannot believe this logic. The " problem " with " saying " a

child

> > with asperger's is autistic?

> > > Are you kidding me?

> > >

> > > I am sorry if kids who have asperger's being called " autistic "

gets

> > in your way, but perhaps,

> > > according to this logic, you should toss out all of the kids

who

> > are diagnosed with

> > > PDDNOS as well. After all, they didn't meet the criteria of

classic

> > autism, either.

> > >

> > > I have no problem with distinguishing between the differences,

but

> > not at the expense of

> > > my son or anyone else's here who didn't have enough severe

symptoms

> > for someone else's

> > > satisfaction.

> > >

> > > The diagnostic criteria between aspergers and autism are

IDENTICAL

> > with the exception of

> > > aquiring language skills. Since many kids with asperger's did

have

> > delays in language

> > > development, it is heavily debated as to whether or not there

> > should be a separation at all

> > > as asperger's is truly High Functioning Autism. No to mention,

many

> > kids diagnosed with

> > > classic autism also had language skills before they lost it and

> > some still have language

> > > skills.

> > >

> > > And no, the discussion is not about who suffers more, but it is

> > also not about the 'word'. It

> > > is about parents of children with classic autism not wanting or

> > accepting that children with

> > > asperger's have autism.

> > >

> > > Your post just proved the entire point. You have reduced

another

> > form of autism to being

> > > on a level of peanut allergies, asthma and learning

disabilities. I

> > also believe, as you do

> > > that many kids were hurt with different levels of being

affected.

> > But I am not here because

> > > my son has a learning disability.

> > >

> > > If a child with a higher form of autism interferes with the

best

> > interest of your son, then

> > > hey, that's something you are going to have to deal with. There

are

> > people here on this

> > > board who have 'recovered' children, children who are improving

and

> > children who are just

> > > diagnosed with PDD. Are they interfereing as well? What about

kids

> > who have high

> > > functioning autism and are indistinguishable from low

functioning

> > asperger's, yet carry the

> > > label of autism instead?

> > >

> > > Since many parents here also have more than one child diagnosed

> > with different types of

> > > autism, such as classic autism, PDDNOS and asperger's, should

they

> > only be calling the

> > > one with " classic autism " their autistic child? The others

don't

> > fit?

> > >

> > > I don't think so.

> > >

> > > Distinguishing is fine. But please don't call it a 'problem'

that a

> > kid with asperger's is being

> > > called 'autism' as if we parents have made this up. Our doctors

> > used the word 'autism'

> > > when they diagnosed our kids, just like they did when they

> > diagnosed yours and kids with

> > > PDDNOS.

> > >

> > > Instead of considering it an interference to the best interest

of

> > your child, why not look at

> > > it from the true perspective? There is a spectrum...an entire

> > spectrum of autism...and

> > > some kids are more affected than others. But they are all

autistic.

> > Aspergers included.

> > >

> > > Col

> > >

> >

>

May 29, 2007

,

I agree completely. I am sorry if I implied that no one in the public eye

matters. Of course

we have to swing public opinion on the seriousness of autism. I have argued the

same all

along.

What I meant was that certain Joe Shmoes are not ever going to be moved on

anything. We

have all met the people I am talking about...a neighbor who doesn't care if your

child has

autism. They only care that your child isn't acting right in the neighborhood

and 'you don't

have control over them'. We would all love to change their perspective but some

are just

never going to budge. But we can focus on the ones who can and do 'get it'.

Some of us even deal with family members that don't 'get it'. They cannot begin

to

understand how hard it can be or what we deal with on a daily level. And god

knows we

have tried to make them see it because sometimes we just need help or support

from

them.

What I am saying is that no one should worry that a child who is functioning on

a level

higher than another child is somehow compromising the fight concerning autism.

The

sheer numbers of children affected are out there and they are all different to

some level.

Even within the classification of 'classic autism', there are different

symptoms, behaviors

and reactions. They cannot be compared by us, the parents, as if some are

autistic and

others are not simply because of the level of ability they have.

The spectrum is the spectrum. Each specific diagnosis only exists on the

spectrum to help

define behavior and ability of each child with autism. It is not meant to only

define one

group with autism and the rest as something else.

We do need to sway public opinion as a whole but we need to do so together.

Shoulder to

shoulder, with each child, mild and severe, standing together as the

representatives of

autism and all it can entail.

Sorry if that wasn't clear.

Col

> > > > >>

> > > > > I don't believe this conversation is about who is " suffering "

> > > more.

> > > > > I think it is about what words mean. ASD is not equal to

> > > autism.

> > > > > One of the problems with saying a kid with aspergers is

> autistic,

> > > or

> > > > > a kid with ADHD is autistic, is that eventually you have

> people

> > > > > saying that Einstein was autistic, and what the hell are

> these

> > > > > parents complaining about.

> > > >

> > > > I cannot believe this logic. The " problem " with " saying " a

> child

> > > with asperger's is autistic?

> > > > Are you kidding me?

> > > >

> > > > I am sorry if kids who have asperger's being called " autistic "

> gets

> > > in your way, but perhaps,

> > > > according to this logic, you should toss out all of the kids

> who

> > > are diagnosed with

> > > > PDDNOS as well. After all, they didn't meet the criteria of

> classic

> > > autism, either.

> > > >

> > > > I have no problem with distinguishing between the differences,

> but

> > > not at the expense of

> > > > my son or anyone else's here who didn't have enough severe

> symptoms

> > > for someone else's

> > > > satisfaction.

> > > >

> > > > The diagnostic criteria between aspergers and autism are

> IDENTICAL

> > > with the exception of

> > > > aquiring language skills. Since many kids with asperger's did

> have

> > > delays in language

> > > > development, it is heavily debated as to whether or not there

> > > should be a separation at all

> > > > as asperger's is truly High Functioning Autism. No to mention,

> many

> > > kids diagnosed with

> > > > classic autism also had language skills before they lost it and

> > > some still have language

> > > > skills.

> > > >

> > > > And no, the discussion is not about who suffers more, but it is

> > > also not about the 'word'. It

> > > > is about parents of children with classic autism not wanting or

> > > accepting that children with

> > > > asperger's have autism.

> > > >

> > > > Your post just proved the entire point. You have reduced

> another

> > > form of autism to being

> > > > on a level of peanut allergies, asthma and learning

> disabilities. I

> > > also believe, as you do

> > > > that many kids were hurt with different levels of being

> affected.

> > > But I am not here because

> > > > my son has a learning disability.

> > > >

> > > > If a child with a higher form of autism interferes with the

> best

> > > interest of your son, then

> > > > hey, that's something you are going to have to deal with. There

> are

> > > people here on this

> > > > board who have 'recovered' children, children who are improving

> and

> > > children who are just

> > > > diagnosed with PDD. Are they interfereing as well? What about

> kids

> > > who have high

> > > > functioning autism and are indistinguishable from low

> functioning

> > > asperger's, yet carry the

> > > > label of autism instead?

> > > >

> > > > Since many parents here also have more than one child diagnosed

> > > with different types of

> > > > autism, such as classic autism, PDDNOS and asperger's, should

> they

> > > only be calling the

> > > > one with " classic autism " their autistic child? The others

> don't

> > > fit?

> > > >

> > > > I don't think so.

> > > >

> > > > Distinguishing is fine. But please don't call it a 'problem'

> that a

> > > kid with asperger's is being

> > > > called 'autism' as if we parents have made this up. Our doctors

> > > used the word 'autism'

> > > > when they diagnosed our kids, just like they did when they

> > > diagnosed yours and kids with

> > > > PDDNOS.

> > > >

> > > > Instead of considering it an interference to the best interest

> of

> > > your child, why not look at

> > > > it from the true perspective? There is a spectrum...an entire

> > > spectrum of autism...and

> > > > some kids are more affected than others. But they are all

> autistic.

> > > Aspergers included.

> > > >

> > > > Col

> > > >

> > >

> >

>

May 29, 2007

I'm sorry I wasn't clear. What I meant was, as

far as the DSM is concerned, my son has classic

Autism, albeit very high functioning. However,

even doctor's don't understand the differences,

so one gave him a diagnosis of PDD-NOS and

another gave him a diagnosis of Aspergers. I

believe that this is because my son can

communicate now, regardless of the fact that he

didn't communicate until he was 4.

This lack of a proper diagnosis hurts my son,

because many people don't understand what

Aspergers is. Because most professionals and I

didn't understand what PDD-NOS actually meant,

when my son was diagnosed with it, the school was

able to get away with not providing social

learning services.

My son is truly socially disabled and cannot

work, however, I'm sure the diagnosis of

Aspergers, as opposed to Autism, has hurt his

chances of getting SSI. He's been denied twice

and is waiting for a hearing.

So, long story short, what I'm saying is, I wish

medical professionals would call a spade a spade.

If it's Autism, call it that, and don't try to

" soften " the blow for parents because it ends up

hurting the Autistic child in the long run.

Kim

--- Anita <mysuperteach@...> wrote:

>

> >

> > I think some of the trouble lies here, in

> > diagnosis. You said the child doesn't meet

> > standards for classic autism if:

>

> A child has to meet these two criteria (as well

> as others I didn't

> list) to be diagnosed Asperger's. If not, the

> diagnosis will be

> something else, not necessarily classic autism.

>

> >

> > " D. There is no clinically significant

> general

> > delay in language

> > (e.g., single words used by age 2 years,

> > communicative phrases used

> > by age 3 years)

> > E. There is no clinically significant delay

> in

> > cognitive development

> > or in the development of age-appropriate

> > self-help skills, adaptive

> > behavior (other than social interaction) ,

> and

> > curiosity about the

> > environment in childhood. "

> >

> > However, both of these were true for my

> oldest

> > son, but because he speaks well now, and can

> > almost pass for " normal " , the doctors I've

> been

> > to want to say he's got Aspergers or PDD.

>

> I'm sorry Kim but I don't understand your

> point. Do you mean that

> the doctors want this but you don't?

>

> Anita

>

> >

> > Kim

> >

>

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> >

>

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May 29, 2007

Kim,

I understand what you're saying now and I agree with you. People who

are paid to diagnose should be doing so carefully, with attention to

what is in the best interests of the child (i.e. getting as much good

help as possible) as well as what the criteria are. Not trying

to " soften the blow " for parents or save the school boards money, or

other crap.

I hope you know that the arguments I'm trying to make here are not an

effort to " toss out " people like your son. Quite the opposite in

fact. Part of what I want the general public--which includes

teachers, psychologists, doctors, and the guy down the street who

pays the taxes that could help our children get services--to

understand is that Asperger's is not equal to quirky genius. It is

many things--including, according to the criteria we must use for

now, what your son has--and can be debilitating and therefore

requires the proper funding and help.

Anita

>

> I'm sorry I wasn't clear. What I meant was, as

> far as the DSM is concerned, my son has classic

> Autism, albeit very high functioning. However,

> even doctor's don't understand the differences,

> so one gave him a diagnosis of PDD-NOS and

> another gave him a diagnosis of Aspergers. I

> believe that this is because my son can

> communicate now, regardless of the fact that he

> didn't communicate until he was 4.

>

> This lack of a proper diagnosis hurts my son,

> because many people don't understand what

> Aspergers is. Because most professionals and I

> didn't understand what PDD-NOS actually meant,

> when my son was diagnosed with it, the school was

> able to get away with not providing social

> learning services.

>

> My son is truly socially disabled and cannot

> work, however, I'm sure the diagnosis of

> Aspergers, as opposed to Autism, has hurt his

> chances of getting SSI. He's been denied twice

> and is waiting for a hearing.

>

> So, long story short, what I'm saying is, I wish

> medical professionals would call a spade a spade.

> If it's Autism, call it that, and don't try to

> " soften " the blow for parents because it ends up

> hurting the Autistic child in the long run.

>

> Kim

>

May 29, 2007