Re: Do Parents Listen

January 9, 2003

Thanks for the insight Steve. There is a Asperger mentor program in Ontario,

that matches children up with adults, to let them know how to cope and that

they are not alone. So some parents are listening.

Do Parents Listen

> Hi all,

>

> I am an Adult Aspie and as such have grown up knowing what AS is all

about.

> Well that is not strictly true. I found out about AS at 29, but always

knew

> I was different.

>

> I just wondered if parents really listen to other Adults that have the

same

> condition as your Son and Daughter has now. Its all very well talking to

> other parents to get ideas and advise. But the only people who will know

> what lies in store for your Son or Daughter are people who have grown up

> with the condition. You can go to as many shrinks as possible and have a

> multitude of medications to choose from. But really how do you know what

> will or will not work???

>

> In my experience Shrinks just look at their watch and have nothing

> intelligent to say. I think anyone with half a brain could listen to

> someone go on for an hour and get paid a lot of money to do it. Then give

> them some happy pills and send them on there way.

>

> Or is it that parents are afraid to face the truth and are afraid to look

at

> other Aspies or people with disorders and see what lies in store for their

> Sons or Daughters.

>

> Now you can ignore this and think oh its just another sad person against

the

> establishment. Or you can think on and realise that Adults have something

> to contribute as well as other Parents. We all have a part to play in

> Educating People about AS.

>

> I know that my Mother would of loved anyone to listen when I was growing

up.

> She would of loved to of made contact with a Man or Woman that had a

child

> with my condition, but equally she would of loved to of been given some

hope

> by meeting a successful Adult Aspie, who held down a job or had a Wife and

> Family. That was totally at odds with their views of me in the past.

>

> Just something to think about,

>

> Steve

>

January 9, 2003

Steve,

Your letter is very interesting but you missed a huge point. Asperger's in

the children that we see is a symptom of a disease. If this disease is left

untreated it will progress. All the education and understanding are not going

to replace medication. The goal here is not to make kids accepted but to make

them normal. Kathy -NNY

January 9, 2003

Sorry but I disagree as AS is actually a Neurological Condtion that is not a

Disease but is the way the brain perceives information.

It is well noted that an AS Child processes information using different

parts of the brain than an NT Child. I say help the child but also

encourage the positives of the condition ie some children with AS have above

average intelligence. If you dope them up to fit in then they will loose

the thirst for knowledge. The fact of the matter is that many genious

including Einstein how now reported to of had AS. They shaped the world as

we know it today. Far from social missfits the world would be a sorrier

place had we of retarded Einsteins Groth.

If we had of had a go at anyone who had radical thought patterns we would

still be in the dark ages now and being hunted by wild bears in caves. The

fact of the matter is that most intelligent people have some kind of Autism.

To call it a disease just simply gives other people amunition to say that

the children or adults are not normal and therefore should be cured.

I have AS and find it upsetting to think that people label me as having a

disease. I do not see as a disease the will to have a thirst for knowledge

and a different way of thinking.

I challenge anyone here to say that tablets would be a cure for AS. There

is no cure short of brain surgery when we become advanced and that would be

too radical. Tablets calm the child down and may make him more focussed but

what about when he or she reaches adult hood. What then??? Are we going

to keep them dependant on tablets.

You should talk to adult aspies and learn what your son or daughter could

become. Embrace the careers they have forged for themselves against the

odds. See the progress they have made without meds.

In the 1970s I was put on Junior Valium at the age of 7. It did no good at

all. Sleeping tablets at the opposite effect on me. Ever since then I had

been on and off tablets. Tablets almost cost me my marriage as I became

paranoid etc. Anyway I am now not on any medication and such can see

clearer than I ever have before. My emotions have returned. I laugh at

jokes on TV and cried when I needed to.

Short from having a disease I can run web sites. Build Computers and Do

Graphical Art all self taught. I run my own AS Group and it has a lot of

Adult Aspies who again would not be too impressed to have what there whole

being means to them, called a disease.

I think that children need to ask quesitons and they need to expand their

minds. I know teachers that know the truth. The real truth is that

Teachers no longer want to teach nore do they have the resources and the

time to cope with difficult pupils.

My friends child for instance asked more questions about the moon and how it

was formed etc. He was just expressing his interest in Science. But he was

sent home with a note to say he was distruptive to the class and

subsequently sent to a Doctor to have drugs. He went from being a very

active child to almost a zombie. He also developed muscle spasums and a

rash around his mouth. I think this is nothing short of child abuse and a

society that thinks a pill will cure anything.

This is not the common cold its a Nerological Condition. All these Teachers

want is an easy and well behaved class. They also have a Tennery that means

that after 2 years they can't be touched for another 8. So even if they are

a bad teacher they can't be kicked out.

Kids at School already compare medications. I teacher friend of mine in the

USA told me that is what happens. My friend Melodys Son, Arek was told that

they wanted to put him on Prozac. But he said no and Melody Agreed. The

result is a child who has a freedom to express himself. He is brilliant at

art and 3d lanscapes and is onyl 10. You do not see the bigger picture here

Its like calling black people a disease because of the colour of their

skin. I will gladley show you or any of you the truth of AS. Read Tony

Attwood and see what he has to say about AS People. These are people who

actually do their jobs and are grateful for the work they do. They excell

in complex areas. They have a thirst for knowledge and a wilingness to

learn. We did not get here by kicking footballs around on a pitch. Someone

had to invent electricity and machines for making the balls. We are not

talking thick or retarded people here but people with highly evolved minds.

Here is something I took off my site:

What is Asperger's Syndrome?

Asperger's syndrome is a form of autism. Autism, in all of its forms, is

what is called a pervasive developmental disorder. In essence, it is a

slight difference in the construction of the brain, probably present since

birth, that affects the way the child develops. It's not a mental condition

... it is a neurological difference. Although the terms that describe it

(syndrome, disorder, et cetera) have onerous

connotations, it's more accurate to simply say that so affected individuals

are different.

Most of the differences relate to the way that aspies (a term that people

with Asperger's Syndrome use to describe themselves) communicate with others

They tend to have a rather straightforward style, and that has several

implications. First, the roundabout way in which normal (neurologically

typical, or NT) people communicate is replaced with a rather blunt,

sometimes apparently tactless approach. Aspies say what they are thinking,

and there is no such thing as beating around the bush. They don't " say

things without saying them, " or lace their words with innuendo or hidden

meaning. There's no subtext... what is said is what is meant, and it is

that simple. NTs often have a hard time figuring out what an aspie means,

simply because he (the NT) is not accustomed to interpreting the words

completely at face value. They often refuse to believe that there is no

hidden meaning, or that the comments they interpret as rude or harsh are

actually meant to be helpful. This can cause hard feelings and

misunderstandings, and unfortunately the aspie is usually on the losing end

of the exchange.

Aspies communicate and interpret language literally. That's not to say that

they do not make use of metaphor or simile; in fact, many of them show

rather advanced use of such concepts. However, the basic mode is to use

words in a very unambiguous and precise way. Precision and clarity (and

often verbosity) are the hallmarks of typical aspie speech and prose.

Aspies typically use a formal manner in everyday communications, written or

spoken. While odd to NTs, this is an outgrowth of the aspie preoccupation

with precision and accuracy in the use of language.

As children, aspies lack the inborn " detective skills " to automatically

determine and integrate the " unwritten rules " of personal conduct and body

language (often including facial expressions). Parents do not have to

actively teach their children to recognize these nonverbal cues, because the

children have a built-in ability to learn them, and to incorporate them

appropriately into their own code of conduct. Aspies never pick up on these

things, so as adults, they still do not have the ability to recognize these

nonverbal signals. Of course, this can cause confusion when NTs and aspies

communicate. The NT may send signals that he is not interested in a

particular topic, or that he has tired of talking to the other person

completely. The aspie will miss these signals, and the NT typically grows

more and more angry as his signals, from his perspective (and at an

unconscious level), are ignored.

The aspie, whether a child or an adult, is not usually interested in the

social hierarchy of the group. Popularity, " coolness, " jealousy, image,

office politics... all of these are things that do not concern aspies.

Unfortunately, this often means that they end up at the bottom of the

hierarchy. In school, aspie kids are often picked on by all of the other

kids, who seek to improve their own prestige by abusing others. That need

to improve one's image, even if by making others look bad, is not something

that aspies can really comprehend. They just do what they want to do,

without any worry about whether something is " cool " or not.

Many of the medical texts suggest that people with AS prefer to be alone.

That's not really accurate, though. While most aspies will need to have

some " alone " time each day, they don't usually want to remain solitary all

of the time. Most aspies do want to be social and to interact with others,

but they often have long histories of disastrous results with regard to

interpersonal communications, for the reasons described above. It is not so

hard to see why many aspies shy away from others.

Aspies tend to be well above average in intelligence, and language skills

far in excess of the norm for the age group are common. Aspie children

often read and write several grade levels higher than their like-aged peers.

Aspies of all ages often have unusually expansive working vocabularies, and

it is often said that aspie kids talk like adults.

One of the most interesting aspects of the aspie personality is the

perseveration, " or the special interest. Aspies tend to be rather deeply

engrossed in one specific topic, and that one area of interest dominates the

mind and free time. This is not to say that they cannot think of anything

else, but they show a sense of zeal and enthusiasm for the special interest

that most NTs will never experience. The topics of interest can be quite

common, like computers or car repair, or they can be rather bizarre.

Anything from dinosaurs to fleas to mimeograph machines can be the focus.

The person will typically seek to gather and absorb as much information on

the special interest as he can find... from libraries, the internet, experts

in the field, and through direct experience where possible. Sometimes the

special interest persists for years; in other cases, it may only last for a

few weeks, at which time a new interest will take over.

Aspies tend to be very responsive to stimulus. Loud noises, bright lights,

powerful odors, or unexpected touch can overload an aspie's mind. Loud

noises of short duration produce an effect in the mind that resembles that

of scratching a chalkboard. Certain persistent noises, especially loud or

busy " ones (like multiple voices), can be very tiring and stressful.

Visually busy or bright environments can have a similar effect. Aspies tend

to prefer quiet environments with subdued lighting. Many of them carry

earplugs and sunglasses to help them deal with unexpected sensory overloads.

The aspie mind by nature abhors inaccuracy and imprecision, and dishonesty

and deception do not come naturally. Aspies are by nature loyal, accepting

of difference, and have a talent for being able to accurately assess

themselves and others. Their unique position outside of the norm allows

them to see things as few can.

By nature, people with AS are innovators; their inability to recognize the

unwritten rules means that they live in a world largely without preset

limits... so ideas and concepts that may never have existed without such a

perspective are born. People like Ludwig von Beethoven, Jefferson,

Albert Einstein, and Bill Gates were (or are) probably aspies. Arrogant,

eccentric, strange, intelligent, perceptive, genius. They're all words that

have been used to describe the people above, as well as many or most known

aspies.

Medical texts tend to describe AS in terms of impairment, disability, and

the problems it causes. They're all written from the perspective that

normal is good and unusual is bad; that all deviations from the usual are

signs of dysfunction and must eventually be cured. They fail to see the

beauty of AS, and of being different. Many aspies, including the author of

this article, like their AS... it is more than just a condition in a medical

book. It's a part of who they are, and what thy are. As this article's

author says, " I would not be 'me' if the AS were not there. I really do see

it as a thing of beauty. "

-- Re: Do Parents Listen

Steve,

Your letter is very interesting but you missed a huge point. Asperger's in

the children that we see is a symptom of a disease. If this disease is left

untreated it will progress. All the education and understanding are not

going

to replace medication. The goal here is not to make kids accepted but to

make

them normal. Kathy -NNY

January 10, 2003

Kathy et al..

I'm curious how many kids with a true Asperger Syndrome diagnosis would fit

into the category? It seems that most of the kids with Asperger that I

know tend to have less " medical " things going on than those with autism/PDD

or various other related diagnosis. As my kid becomes higher and higher

functioning, he does have many of the same traits Aspie kids have and some

have suggested a more Asperger diagnosis but he is clearly different in many

ways as well. It really seems to me that there are various subgroups among

the spectrum that are each helped in different ways. So I'm curious to know

how many kids with a true Asperger Syndrome diagnosis -- not just

high-functioning autism or PDD -- have the immune problems the kids have?

Gaylen

January 10, 2003

To Steve and anyone else who is not here to discuss :

Please. This is not an Asperger list. This is not an AS list. It is a medical

list to discuss immune system DISEASES. Our children have yeast overgrowth

problems, severe food allergies, low ferritin levels, elevated viral titers, low

(in my son's case, almost non-existent) Natural Killer (NK) cells, and impaired

blood flow to the temporal lobes of the brain. Most get sick with viral

infections very frequently. And they have autistic-like symptoms. They are

ILL. The medications being given to our children are not to " dope " the kids up,

but to treat the aforementioned conditions: antifungals, antivirals, immune

modulators. SSRI's used are in extremely small doses are not to change

behavior, but to help normalize blood flow to the temporal lobes of the brain.

There is PLENTY of peer-reviewed research to support the hypothesis. Go to

http://www.nids.net and read about what is, and the protocol we follow,

before you start lecturing us again. You are barking up the wrong tree and I,

for one, am running out of patience.

Donna

January 10, 2003

Gaylen,

My younger son was diagnosed as Asperger's by the Regional Center. This

diagnosis was confirmed by our Supt of Schools team of autism Specialists.

The diagnosis describes the difficulties he had, although the reason is

. He also developed infection triggered OCD when he was seven.

Cheryl

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Subject: Re: Do Parents Listen

Date: Fri, 10 Jan 2003 00:57:32 EST