Re: wonderfull article on autism-fyi

[Guest guest]

Thanks for the site. I enjoyed the Myth Of Autism article from that

page.

http://www.nids.net/myth.pdf

I know just from the therapy center where I go I have met Moms that

say that their child didn't meet all the necessary criteria for

Autism, but that the doctor gave them the diagnosis to get services.

Children should get services based on their need not on what label

they have. I think the special ed laws need to be broadened so

parents don't feel pressured to give their children a label that may

not be correct. With the incorrect label, children may not be

getting the proper treatment.

>

> > <A HREF= " http://www.nids.net/ " >Click here: .net - Working to

Give Our Children a Future</A>

>

>

>

>

[Guest guest]

I agree an excellent article http://www.nids.net/myth.pdf.

It also points out wonderfully why our society overlooks the rising

number of children with the symptoms of what we are calling oral and

verbal apraxia, symptoms of each that were not even part of Kanner

and Eisenberg's (1943) and (1956) definition of autism. Everyone can

ignore " apraxia " by just expanding what autism is.

Imagine my frustration, and the frustration of the rest of us who

have children that by chance -didn't go to an MD or SLP for an

evaluation that diagnosed our apraxic child as autistic or PDD -but

instead looked at the symptoms and diagnosed them as apraxic and

didn't worry about the politics of whether it's a name only

applicable to adults. We don't have any " schools " for apraxia, no

real awareness -instead we are at times faced with doubt, fights with

schools as well as insurance companies for appropriate therapy to

help our children -and in many cases we as parents have to first

educate the very people that are supposed to be telling us how to

help our children!!

Oral and verbal Apraxia -a condition (disease?) which there is no

doubt is spreading -and quick -or maybe it's just this NJ

area. " Late talkers " with developmental delays in speech will start

talking typically without any speech therapy -even though therapy

won't hurt them. " Late talkers " typically don't have even mild

hypotonia and sensory dysfunction in direct relation to most apraxic

children do. Whatever camp you are in to what you want to call this,

verbal apraxia or not, there is a rise in children that lose words,

can't move their mouth and tongue correctly to say sounds -or say

certain sounds, don't develop speech the way other children do,

don't " pick up " speech by being around other children, and children

who's ability to be understood breaks down the longer the word or

sentence they are trying to say. There is also a rise in children

with oral apraxia (or buccofacial apraxia

http://www.braincampus.com/npsych/apraxia.html ) who can not lick

their licks on command but have no trouble eating, who can not smile when you go

to take

their picture and say " smile " -yet will smile spontaneously once in a

while, or like my son Tanner -who did not know how to blow out the 2 little

candles of their second birthday cake. Symptoms that are consistent,

unlike what is presented in this article " the myth of autism " .

Symptoms that are spreading in children perceived with " no other

issues " -symptoms that are suddenly found now that awareness is going

up on what to look for -in children with other conditions, disorders,

and syndromes (and found in most cases by parents first). And yet,

most articles and journals are written, and research and fund raiser

projects go on without even a mention of oral and verbal apraxia.

If apraxia is mentioned at all -it's typically referred to as

a " neurologically based speech disorder " or " multi-faceted communication

disorder " -things that would " so

easily " roll off the tongue of parents at the playground when talking

about their nonverbal three year olds who can play on the swings and

the monkey bars - but neither of which know how to blow bubbles.

(Read that in a sarcastic tone with a smile and that's how I'm saying

it) Other than a few grass roots nonprofits like CHERAB -all of which

are overwhelmed -there is no great awareness or care of the condition

that is spreading -apraxia. Instead, just like Dr. Goldburg stated,

the definition of autism has again just expanded to include this

too. I do have to get going on those T Shirts because " Children

should be seen...AND HEARD!!! "

I don't care what you call it -I just know that if my son was

diagnosed with autism -ABA therapy would not have helped his oral and

verbal apraxia, and I know that if Tanner was also diagnosed with any

other disorders or syndromes -they would have just led me to believe

that his lack of speech was from this other condition -not from

the " apraxia " and he most likely would not have received the type,

intensity, or amount of therapies he did receive to get him to learn

to talk -and smile, when he wants to. I also probably would not have

learned about the Omega 3/6 (EFA) formulas -which in my son's case were so

important and still are. I also don't understand people being so

scared of the apraxia diagnoses. The best thing is that because

Tanner was diagnosed with oral and verbal apraxia -when he turns six

years old on June 11th -he will have no trouble blowing out his own

candles -or asking for a second piece of birthday cake ...and that's

a beautiful thing.

=====

[Guest guest]

,

I also have been pressured to get a autism diagnosis for my

daughter. I have told these therapists that her neurologist has

determined she is not Autistic...and they tell me to go find a doctor

that will GIVE that diagnosis to her so that she can be assured

more therapy. Why can't she get the therapy she needs from EI just

based on the fact that she has a severe speech delay...no matter what

you call it? They should be giving therapy based on NEED not

labels...but they don't. So how many kids are being diagnosed

Autistic, because it is the more familiar term. Our speech therapist

at the center my daughter gets her therapy from doesn't even have the

Kaufman Speech Praxis Test in the center, much less has ever used

it. She disagreed with me on the symptoms of Verbal Apraxia until I

pulled out the Cherab Foundation flyer that came with my ProEFA

order. She wasn't even interested in taking a copy of it until I

told her it mentions that some Apraxic kids are misdiagnosed as

Autistic. When verbal Apraxia is coupled with Hypotonia & DSI like

my daughter is, it is often misdiagnosed I believe. The sad thing is

that these parents that get that Autistic dianosis (like that Mother

I mentioned in my last post), then start to believe it and treat

their children accordingly. The last time I saw her she was looking

to move to an area that has a lot of assisted living centers for her

son and he is not even 2 years old!!!! How sad that she is already

looking for homes to place him when he is an adult when it is many

years away. This is a boy that her neurologist said didn't have

enough of the symptoms to qualify for Autism, but was given that

diagnosis to get services. He was moved into an Autistic program and

is not receiving the intensive speech therapy that Apraxic kids

need. So getting him that diagnosis may assure him services, but the

wrong kind. :-(

I'm trying to get my insurance to pay to have my evaluated by a

speech therapist elsewhere that has the Kaufman Speech Praxis test.

If not I guess I'll have to pay for one out of pocket.

Jill - Mom to almost 30 months with (genetic) Hypotonia

(moderate all over) with a speech delay (possible DSI and Verbal

Apraxia)

[Guest guest]

Each time I read an article like this one in I feel more relaxed. My 8

years old son has a visible brain damage. At the time we wanted to label his

behavioral disorder, there was no way to to label him as 'autistic'. Anyway, he

had (and has) a lot of autistics behaviors. He didn't pick up any language, no

eye cotact, a lot of deficient social interaction, and a lot more. He was first

diagnosed as profound deaf, we were living in Norway at that time and spec ed

teachers complaint with us because it was OUR fault that he couldn't pick up

sign language: they said he was spoilt and that was the reason he didn't follow

rules and make eye contact. Looking for other alternatives for him, we went to

Spain and there they found his neurological problem. But he had a SLI and autism

was out of mind. Anyway he didn't have intentionality to communicate and was

loosing his few words he could already say. feeling that he had to keep his

mother language (Spanish), that he heard nad that he was autistic, I decided to

study, research and work with him by my self.

I could build up his language and solve a lot of his autistics behaviors with

pictures and using PECS and with strong structured visual acitvities.

I agree that he was not a book autistic but we lost a lot of rich time (his

first 5 years) without a propper re education. I strongly believe that if a

child has pragmatic dishabilities, that child must be label as autistic in order

to get structured aducation and visual strategies for his learning. Autistic

society in UK took that decition and you can read it in their web page. Autism

is not a psichiatric desiese, but a disorder due to some kind of brain

badfunctioning. Never mind you are not completly sure, it's better to start

since the begining with structured rehab, and other strategies to communicate if

they are non-verbal or don't use oral language as a communication tool.

[ ] Re: wonderfull article on autism-fyi

Thanks for the site. I enjoyed the Myth Of Autism article from that

page.

http://www.nids.net/myth.pdf

I know just from the therapy center where I go I have met Moms that

say that their child didn't meet all the necessary criteria for

Autism, but that the doctor gave them the diagnosis to get services.

Children should get services based on their need not on what label

they have. I think the special ed laws need to be broadened so

parents don't feel pressured to give their children a label that may

not be correct. With the incorrect label, children may not be

getting the proper treatment.

[Guest guest]

-Hi ,

I agree with your view and APPLAUDE your committment to reach the

best outcomes for your particular child but I disagree a little with

the general conclusions ( for other childeren) that you reach ( if

you will forgive me for saying so !).

No one should accept a " label " for their child for the sake of it -

or to make life easier for the support services . Part of the problem

here though is defined but not explained in the article . Like it or

not many of our children here do display autistic behaviours and that

may mean that the childs interaction with the world is coloured by

some of those autistic symptoms .

But ( and its a big but ) that is only a problem if you believe that

Kanners autism is THE definition of autism - and it is not.

Kanner described a condition which , more often then not was apparent

from birth . It was very rare .

There is now a condition which matches some of the symptoms of autism

BUT does not appear from birth and may actually follow on a period of

absoloutely normal development. Almost all of the children which

represent this huge increase in ASD diagnosis are in this 'new'

condition. In the UK it is called late on-set and it is now far and

away the most common type .It even occasionally manifests as

regression and is frequently accompanied by irregular bowel

patterns /problems and other physical symptoms ( sweating, red ears,

inability to sleep, food cravings etc)

I don't give a toss whether what my son has is described as autism or

autistic like symptoms ( or my preference, Allergy Induced Autism) .

It matters not a jot .

What counts is that the " label " may explain the causation behind some

of his behaviours . In trying to gain an understanding of what autism

feels like I have gained greater copmpassion and understanding for my

son .

More importantly it has helped me track down and understand what

happened to him and by that process I have learnt how to reassure him

in his panic , understand the reasons behind his restricted diet ,

help, reduce and manage some of his need for sameness and ritual and

improve his symptoms 100%.

If I had refused to accept a diagmosis of autism I would never have

researched autism . I would never have found out that many of his

symptoms were in fact a biochemical reaction to the food he ate . I

would have been stupid enough to continue feeding him nothing but the

very foods that made him worse. I also would not have learnt all the

behavioural approaches and techniques that have allowed me to reach

inside his world and tug him out a little. I would also have failed

to make his life a little more bearable and that would have been

unforgiveable .

I believe that a child displaying autistic symptoms does NOT

invariably therefore become autistic.... and therefore incureable

and a lost cause. I believe the oppsite . I believe that when god

gave me the courage to face the pattern behind my childs behaviours

he provided me with the tools to help and even cure him .

The case you illustrate of the lady planning homes for her two year

old is stupid indeed but that does not make anyone who accepts this

diagnosis into someone who is weak-willed and has given up on their

child.

I accept the diagnosis because it gives me knowledge, it gives me

power and it gives me hope .

Some children here are displaying autistic behaviours as coping

mechanisms for their frustration at lack of effective communication.

Some are receiveing inappropriate diagnosis' from pushy or poorly

briefed medical " experts " . Both of those situations are wrong and I

regularly applaud the FANTASTIC courage of you and many other parents

here who refuse their child be " packaged " to suit some expert or

other.

But some here are ignoring autistic behaviours because they cannot

comprehend that such a label could be placed on such a beloved

child . BY doing this they are protecting themselves but they are

denying their child the hope of cure that may come from examining

options like ABA , Dietary intervention , chelation , Son-rise

therapy etc etc nearly all of which need to be started early to

stand a chance of a cure .

I am always first in the queue to provide a good ringing criticsm of

the Education provided ( by the LEA in the UK ) but pushing a child

with autistic symptoms towards autistic based therapy does not appear

to me to be so very unreasonable . Many children only needing speech

therapy would not need the style of approach that a child with

autistic tendencies would need . AND THE POT FOR GOOD ASD PROVISION

IS PRETTY SMALL !!!! I don't want tutors and therapists trainned in

ASD working with kids who have apraxia because the few mums with

aparaxic children displaying ASD behaviours don't want them

labelled!!!!!

I'm sorry that this has turned out to be long-winded but I guess the

article really did its job well and it certainly brought up issues to

consider !

The article was very good but again I disagree with the conclusion.

It seemed to say lets not call this epedemic autism because that

means no hope . I have an autistic son and I have hope more

abaundantly than many other parents here!!! Why don't we instead say

autism is not what we thought it was ( ie a purely genetic

condition) - there is hope but lets stop being scared by what we

thought it was and instead find out what it is , and get on with

curing it !!

My son is five and he has exceeded everyones wildest expectations -

he would never have done so had I not named the beast and decided

that knowing what was happening to him provided me with my best

chance of a cure. He remains autistic but he continues to improve by

the week . My friend has just had her 7 year olds autistic diagnosis

removed after two years on dietary therapy . I have SEEN the cure and

I have huge hope for my son . That would never have happened if I had

accepted the " just delayed speech with some social delay - get him

into a good playgroup ! " that was offered at 2 years old. I dread to

think where he would be now !

All our kids are different and the labels shouldn't matter - knowledge

and , by that road hope , are the only important things

Best Regards

Deborah Dore

[Guest guest]

Hi All,

When Jack was 21 months I brought him to a

psychologist who specializes in Autisim. I was refered

by a SLP from Boston Children's who saw my son and

when she told me he needed to be seen by the

psychologist I knew who I was seeing. I was extremely

sad to think my son could have autisim. The

psychologist told me that he had 1 foot in and 1 foot

out of the spectrum and recomemded services at her

center for autistic children. I remember crying all

the way home after thinking no way is Jack showing any

signs of autisim, even mild. Each child that goes

through the program which is the ABA apraoach gets a

minimim of 5-30 hrs. a week. After thinking about it,

I did not care about Labels, diagnosis or anything

else just to get my son's other foot out of the

spectrum. So I was grateful he attended the program

and he did very well. Looking back I know his autistic

like symptoms were related to expressive speech

issues, I also know it was extremely beneficial for

him to get the amount of therapy and type of therapy

needed to help him.

Eileen

--- beaniesmum2001 <MONXYMOO@...> wrote:

> -Hi ,

> I agree with your view and APPLAUDE your committment

> to reach the

> best outcomes for your particular child but I

> disagree a little with

> the general conclusions ( for other childeren) that

> you reach ( if

> you will forgive me for saying so !).

> No one should accept a " label " for their child for

> the sake of it -

> or to make life easier for the support services .

[Guest guest]

Jill,

If you don't mind my asking what is " DSI " ?

Alison

[Guest guest]

DSI is the same as SID, it's Dysfunction of Sensory Intregration.

Some use DSI now as SID too closely resembles SIDS, so they use DSI

to avoid the confusion. Some good SID/DSI sites are:

http://home.ptd.net/~blnelson/SIDWEBPAGE2.htm

http://www.geocities.com/~kasmom/sid.html

http://www.tsbvi.edu/Outreach/seehear/fall97/sensory.htm

http://www.sensoryint.com/

>

> Jill,

>

> If you don't mind my asking what is " DSI " ?

>

> Alison

[Guest guest]

-ABA , Dietary intervention , chelation , Son-rise

therapy etc etc.. Could you please tell me a little more about

these?

Thank you so much!

Alison Motley

-- In @y..., " beaniesmum2001 " <MONXYMOO@a...>

wrote:

> -Hi ,

> I agree with your view and APPLAUDE your committment to reach the

>

[Guest guest]

Hi ,

I'll try ! ( but the rest of you please don't shout if it is not

detailed enough or slightly out of date - it is just a general

overview ...more info on any that you have tried woul;d be welcome

though !!)

ABA ..Applied Behavioural Analysis ( or Lovas). It is an intervention

used on young children which involves breaking tasks down into tiny

functions and then teaching each one individually through a process

of praise and reward. The therapy is recommnended to be done

intensively ( up to 40 hours per week). The child is taken right back

to basics and is taught every skill with clear and simple commands -

the idea being that once a skill is taught it can be extended and

generalised. For example " look at me " modelled and followed by a

reward can be the beginings of a child watching and understanding

facial expressions and gaining a greater understanding of social

interaction. The basics behind the technique are well described in

Maurice book " Let me Hear your Voice.

ABA has given rise to Verbal Behaviour - a linked therapy which is

more generalised and is strongly used with non-verbal autistic kids .

Dietary Intervention... Many parents feel these " new " types of autism

have more to do with a biochemical reaction in a child than a

neurological condiotion . The THEORY is that some factor damages a

childs gut . Once that damage is caused it may cause the gut to

become " leaky " . If this happens particles of certain foods can leak

through the gut and into the bloodsteam causeing major problems when

they cross the bloodbrain barrier . The proteins in gluten and casein

(wheat and milk) become substances called caseomorphine and

glutomorphine . The effect that they have on the brain can vary but

includes interupted sleep patterns , unpredictable behaviours (

giggling followed by tantrums) , cravings for certain foods and

extremely self-limited diets . Some behaviours can become extreme as

the childs highs and lows become mopre intense whilst many milder

symptoms echo autistic behaviours . The damage can additionally

result in yeast infections and thrush etc which further unsettle the

childs behaviour and cause more symptoms . www.autismmedical.com

explains the theory on the home page although it is a UK site and the

resources have only limited relevence to those in the Usa. This is

the therapy to look at if your child has a tight list

of " favourite " foods - especially the usual suspects of cheerios ,

chicken nuggets, bread, baby yogurts, cheese and LOTS of drinks like

apple juice !!!

Chelation is VERY contravertial and is again based on the theoory

that a childs whole gut has been damaged . Dietary intervention tends

to be used by those who think that the MMR or anti-biotic use, either

by their child directly ( ie for glue ear) or in utero, has caused

the problem.

Chelation is used by those who think that the high mercury/thimerosal

content of their childs immunistations have damaged them - almost

from birth. The chelation process involves taking supplements which

lift and then remove the heavy metals from the childs body . This is

something that can be done over a period of time but is not to be

embarked upon lightly and NOT without medical supervision . The

symptoms of mercury toxicity are hard top spot and careful testing is

needed - again with full medical support . If you want to read about

it I can give you info - but please e-mail me and I will let you have

some sites .

SON-RISE is the one I know least about and the one of which I have no

personal experience . It is an intervention designed by a family

where the mother worked many hours a day with her autistic son and

effectively echoed his behaviours - trying if you like to contact and

connect with him by joining him in his autistic world rather than

trying to drag him into ours . The son ended up going to university

and speaks and runs the education programme. Perhaps others will know

more ......

I hope this has given the basics . I am not trying to be very

detailed and neither am I trying to recommend any - it's just that

these approaches are out there and I think are worth looking at and

applying your own good sense and knowledge of your child too before

choosing any particualr route . One of them has worked wonders for my

child .....

Happy reading !

Shout if you have any questions !!

Regards

Deborah Dore

-- In @y..., " galison2002 " <motley5@w...> wrote:

> -ABA , Dietary intervention , chelation , Son-rise

> therapy etc etc.. Could you please tell me a little more about

> these?

>

> Thank you so much!

> Alison Motley

>

> -- In @y..., " beaniesmum2001 " <MONXYMOO@a...>

> wrote:

> > -Hi ,

> > I agree with your view and APPLAUDE your committment to reach the

> >

[Guest guest]

Dear Deborah,

I enjoy reading your posts, and would just like to say that you constantly

impress me with you articulate and considered responses. Your opinions often

make me think twice about my own and inspire me to think again or more

deeply. Thank you for sharing.

Brisbane

Australia........but ex pommie!

[ ] Re: wonderfull article on autism-fyi

> -Hi ,

> I agree with your view and APPLAUDE your committment to reach the

> best outcomes for your particular child but I disagree a little with

> the general conclusions ( for other childeren) that you reach ( if

> you will forgive me for saying so !).