Re: Quality of Life in Autism

[Guest guest]

Esther, there was one area that you wrote that really struck me below,

I cut the email down so it would be more easy to read. You stated that

people are helping, changing, and cleaning you but you never asked

them to, then state people don't want to help you and resent you. This

is one problem with the NTs. When to help and when not to help. Like

my daughter, she does not have the skills to tell me when to help and

when not to, for the most part. Like she can say " help " when she's

trying to put on her shoes, but I don't know if she wants me to help

her write or not. So you see, I cannot win. If I try to help her and

she didn't want my help, then I'm trying to force my way of creating

characters on her, but if she does want help and I do nothing then I'm

being resentful of her needing help.

The writing is but one example, but I hope you can understand the

pickle. Autism can prevent one from expressing her wants, and because

she can't express her wants, those who try to help in the way they

would want to be helped could be seen as imposing the helper's views

when that isn't the case.

You mentioned hair. Allie keeps cutting her hair and it looks bad.

Sure, to her it may be great. I can accept that she feels that way,

that it's her hair, and that she has a right to have her hair the way

she wants. But, she also wants to be accepted. She is plenty offended

by someone's bad breath, as an example. A person has a right to keep

their mouth the way they want, eat what they want, etc. But if that

odor is offending Allie's senses so much she cannot get past it, some

would say it's reasonable to ask the person to remove the odor. Well,

to others, Allie's hair cut might be sensory overload to the eyes to

the point they can't get past it. Which is fair, to ask her to keep

her hair such a way that is comfortable to her and pleasing to others'

eyes, or to ask others to change their visual input such that it is no

longer distracting? I would say both. Therefore, there has to be a

give and take. However, there seems to be a big gap between what those

with autism want to give/take and what NTs want to give/take. Those

who have autism might say the person with bad breath should be

sensitive to an autistic's sensitive nose and not be offended. The NTs

might say an autistic should change her sensitivity. Same with hair,

same with dress, same with virtually everything.

The thing is, a communication/relationship model shows 2 circles that

have a portion that overlaps. The more communication is exchanged and

relationships bonded, the greater the overlap becomes. The art of it

all is that each circle is equally working to increase the overlap. In

autism/NT circles, there are significant issues to prevent the

overlap. It is only by working together that the overlap can happen.

NTs need to slow down and look for the subtle hints from people with

autism, and people with autism need to appropriately communicate.

Example, if Allie wants help with writing, throwing her glasses

against the wall doesn't tell me she wants help, it tells me she's

having difficulty. I can't be expected to decipher her wishes from

that any more than she should hold it against me that I took a guess

at her desires and came up wrong. That, in my op, is why NTs need

autism training and why autistics need communication help.

Anyway, didn't mean to babble, just what I got from the message.

I am terrible at this and that, but who cares

> because my amazing abilities make up for those things.

> Why is it that everyone expects me to see things their

> way and adopt their culture and that because my

> weaknesses are visible or more obvious they should win

> and act like they are the normal ones. Yes they are

> helping me and changing me and cleaning me up, but I

> never asked them to, so why do they hate me for it.

> They clean up after babies and puppies, but because I

> am not as little and cute they don't want to help me

> and resent me for it. At least I can see people for

> who they really are and not just the outside of them.

> Autism is a blessing and I am thankful that I have

> this outlook and am a deep person who thinks about so

> many things, not just what I want to do today or where

> I want to go or what I want to wear. Who cares if my

> hair is a mess God loves me for me, not my hair or my

> body or worldy possesions " .

>

[Guest guest]

I to not chosed of autism it chose of me there for it created the

person others know of me as Sondra. It is not the whole of me only

parts of me.... but the biggest parts of me that created and molded

me to be of the person I to be this day.

it is not that I to not want a cure.... I to be to know in life

there is none and so do not hold onto false hopes of getting one. i

t be to comed to terms this is of my life and who I to be in it and

so have to learn to live with it and learn to accept of this is of

my life and cant change it , so have to learn to be okay with self

of who I to be in this life. So in the accpeting process find can

embrace parts of me, because in true there are parts i to feel

creates of me in a good fashions, but at same time much molds me to

be of a person i to never seem to embrace because it is of the ugly

side of autism. such as the sensory overloads, the lack of reading

the non verbal gesturings or interpreting things others seem to get,

recognizing people when they say of hi, this happens often to me in

life and never really have of a clue who they are to be. and it

makes me feel sad because want to do a good job and acknowledge of

them since they took of the time to say hi to me but I to feel

stupid always asking who they are to be. Once such lady jsut be to

did this to me a few days back as was going to take of my missy to

the movies and she wanted to go to the card shop to buy of candy she

likes for the movie. i to gave of her money and told of her to go in

and would be in the store too in a few minutes avoid that store

because they fill balloons with gas and it is of ever so loud and

painful. So not being able to go with you child and worried can she

do this by self and such ( another negative feel as parent and being

autism) anyways a lady comed out and smiled big and sayed hi sondra.

I to beot heared of it and sayed hi back but was so overwhelmed of

my Missy going in and fear for her so went into the store too and

helped of her to get to the line and air things go off and cause me

to ahve to leave in panic and so stood outside to watch of her from

the window.

I to just lost my thinking and so no longer rember what was thinking

LOL here . but anyways cure words do not be to cause me great stress

leves or grief int he sense it does ohters but I to have strong

beliefs to cure too. But one things that cause me greater fear is

the assumption that autism can be cured and so many families run

tyring, and find very few , very, very few ever really reach the

level of no longer appearing autistic at all. And yet many as adults

with spectrum will reach levels they were not as a child and some

can be to appear quite functional as adults that as a child many

would be to assume they do not ever be to reach. so in autism there

is a natural developmental process of gaining too. Not all will be

to reach a functional levle in teh sense of appearing much able but

many will achive much gains in the life process. And for those that

are making slow progress many assume they are of MR and this is why

they never be to gained and this to me is a not true... they are of

intellectually there they simply are more challeged in the areas of

core isues to autism so the barriers to show others what they know

is more challenging.

Sondra

[Guest guest]

Since we're talking cure, I'm wondering what those of you on spectrum

think of those who have lost their dx? Do you think they never had

autism, do you think they got treatments to address the biological

roots soon enough to reverse the changes, or any other thoughts?

I know one little guy whose mother started him gfcf at 17 mos, within

a couple of months of when he significantly regressed. He was dxed

with autism a few months later, but was doing really well. She also

started on DAN! protocol before the age of 2. Now he's 6 and so very

mild I probably wouldn't consider him to have autism, more of a

language delay in his processing. A couple of people have said he

never had autism, that the mother is crazy. That really isn't fair to

the mother, they didn't see how severe his behaviors were or how many

professionals have agreed with the dx, or what she's done to help him.

She was so proactive so early, I wonder if the interventions sort of

reversed itself. Just wondering what you all think. At the same time,

I know people who have tried interventions that seem to do nothing,

but those kids are typically older.

Of course, I'm speaking of autism in terms of biological functioning,

not personality.

Debi

[Guest guest]

I have yet to meet anyone " recovered " . I have had the

fortune to see the truth behind the old Lovaas

" indistinguishable from peers " baloney, as I know one

of his first subjects. Still autistic (though declared

IFP for a while) and has the extra of the worst PTSD

I've ever seen. And I worked in a BD classroom, where

ALL the kids had PTSD.

Biologically speaking...I don't know. Because I have

never seen it. And a lot of the stuff they are doing

is, quite frankly, so dangerous it should be illegal.

It would be were it done to NT children--high doses of

fat soluble vitamins, lupron (only indicated for

central precocious puberty & SEVERE endometriosis,

nice side effects of hot flashes, mood swings, and

osteoporosis), EDTA, DMPS, et cetera. Correcting

dietary deficiencies or allergies is one thing, going

the way of the 'potentially deadly' is another. And

these aren't kids who can say NO.

And of course, some kids just spontaneously 'improve',

and whatever the last thing the parents did is given

credit-this means that to create speech and some

ability to academically get by in mainstream school,

all one needs to do is throw out the dx (spoke 6 weeks

after) and berate the child at every moment for being

different (as long as I can remember). Clearly those

had nothing to do with anything and my brain was wired

for that trajectory anyway.

Kassiane

--- Debi wrote:

> Since we're talking cure, I'm wondering what those

> of you on spectrum

> think of those who have lost their dx? Do you think

> they never had

> autism, do you think they got treatments to address

> the biological

> roots soon enough to reverse the changes, or any

> other thoughts?

>

> I know one little guy whose mother started him gfcf

> at 17 mos, within

> a couple of months of when he significantly

> regressed. He was dxed

> with autism a few months later, but was doing really

> well. She also

> started on DAN! protocol before the age of 2. Now

> he's 6 and so very

> mild I probably wouldn't consider him to have

> autism, more of a

> language delay in his processing. A couple of people

> have said he

> never had autism, that the mother is crazy. That

> really isn't fair to

> the mother, they didn't see how severe his behaviors

> were or how many

> professionals have agreed with the dx, or what she's

> done to help him.

> She was so proactive so early, I wonder if the

> interventions sort of

> reversed itself. Just wondering what you all think.

> At the same time,

> I know people who have tried interventions that seem

> to do nothing,

> but those kids are typically older.

>

> Of course, I'm speaking of autism in terms of

> biological functioning,

> not personality.

>

> Debi

>

>

>

>

>

>

__________________________________________________

[Guest guest]

I guess a lot of it is what one considers indistinguishable. Heck, I

don't know what's " normal " at all. I can see problems in virtually

every kid, but they're all still kids. I think a lot of the

biologically unsafe stuff is pushed by people who don't know safety.

Like cod liver oil, reputable doctors have said to give the FDA dose

or even a little more that is considered the high end of the safe

range by even mainstream practitioners. On the other hand, I've read

parents suggesting giving CLO until the child is showing signs of

toxicity. Dr. McCandless sent out an email begging people to not do

that and said it was very unsafe. Dr. Megson recommends the USRDA

amount. Allie's doc wants her to get the USRDA, I think that's pretty

much what DAN! is saying.

I don't know that much about EDTA and DMPS. I was reading an article

today about the boy that was killed from giving him the wrong

chelator. An FDA official said the correct chelator is " harmless " so I

don't know at what point EDTA is not harmless. I've read some site

like dmpsbackfires.com or something like that. I think it's like any

other treatment, have to research the benefits/risks and know for sure

what is more safe and less safe. Dr. Haley believes in doing all

natural stuff first, like IV vit C/glutathione/NAC to help the body be

able to detox itself. Seems reasonable to me.

I've read very many mixed reviews about lupron. I think has said

how bad it is. What I wonder is how is precocious puberty so unsafe?

Yeah, it's definitely a pain and could be emotionally draining for a

younger girl to have breasts and periods and all, but how does having

hormone levels to a pubescent point damage the body? I can also see

that if testosterone is holding in a poisoning substance, esp in large

amounts, there again, a cost/benefit needs to be done to determine if

a lupron risk is more or less than mercury damaging the body. Never

any easy answers.

I met a little guy at the CDC rally, age 6, who lost his dx and his

parents stated chelation is what did it. I met him and talked with him

for a few minutes. He seemed typical to me, he was laughing when I

joked with him about his cool hair -- it was moussed and spiked up. He

seemed to understand all subtlties I was making and had eye contact,

seemed every comfortable in the situation etc. , did you see him?

Sort of a med blond/light brown hair kid.

I know one thing. Since we started doing low-dose naltrexone and

methyl b-12 shots every other night, Allie has been sick 1 time since

March. That is a near miracle for this little girl, she's been sick AT

LEAST every 2 mos for the last 5 years. I think she missed about 30

days last year because of sickness. She's much happier not being sick

all the time. It was getting to the point I was beginning to wonder if

she would make it and not a single doctor until Dr. was doing

anything to help her get better.

Debi

>

> I have yet to meet anyone " recovered " . I have had the

> fortune to see the truth behind the old Lovaas

> " indistinguishable from peers " baloney, as I know one

> of his first subjects. Still autistic (though declared

> IFP for a while) and has the extra of the worst PTSD

> I've ever seen. And I worked in a BD classroom, where

> ALL the kids had PTSD.

>

> Biologically speaking...I don't know. Because I have

> never seen it. And a lot of the stuff they are doing

> is, quite frankly, so dangerous it should be illegal.

> It would be were it done to NT children--high doses of

> fat soluble vitamins, lupron (only indicated for

> central precocious puberty & SEVERE endometriosis,

> nice side effects of hot flashes, mood swings, and

> osteoporosis), EDTA, DMPS, et cetera. Correcting

> dietary deficiencies or allergies is one thing, going

> the way of the 'potentially deadly' is another. And

> these aren't kids who can say NO.

>

> And of course, some kids just spontaneously 'improve',

> and whatever the last thing the parents did is given

> credit-this means that to create speech and some

> ability to academically get by in mainstream school,

> all one needs to do is throw out the dx (spoke 6 weeks

> after) and berate the child at every moment for being

> different (as long as I can remember). Clearly those

> had nothing to do with anything and my brain was wired

> for that trajectory anyway.

>

> Kassiane

>

[Guest guest]

that is of hard to me to now have read of recovered kids but never

met of them so cant know of it.

I to feel health wise one can improve thus lessensing the symptoms

of autism to a mild or significant degree and feel parent reports

are often more than (anedotal?) But parts of me also wonders if what

is in play is that, that particular child might have maked this sort

of progress due to the progressions of their level of autism. no one

to me can determine of the outcome or level of degree to autism that

will be of a permanent state to me of the very young childrens.

Whatmight appear early on as maybe a severe or moderate classical

form of autism in 2-3 years might progress to a level of high

functioning autism or an Aspergers dx. ( to me, clarifying, that HFA

does not mean intellect to me but higher functining ability in the

core areas but still considered autistic not aspergers syndrome).

So it is hard to base the progression on just biomedical

interventions alone, but then one wonders if no biomedical

intervention would the child had maked the gains anyways, such as

self had no intervetions, no diets, no biomeidcal as child growing

up but over life of me did progress to a level of being more HFA

than the begin states of functioning for me. As adult many will

assume that HFA and Aspergers are the same or at least look alike. I

to think the marker is that those with HFA had the classical profile

and lacked language (speech) or fucntional speech early on... whre

as with true AS I to think they had of early speech just not

functional conversational language.

So as shared lack what is of true or not true of the said recovered

childrens and think if the numbers of recovered kids are of

recovered why are they not models so to speack of media and medical

examples in a higher media/medical known fashions. If ones child

hasd of a rare things of felt to be no cure and is of cured I to

wonder why they would opt to keep it all secret and not make of it

public.

Some of my childrens are very functional and can appear

indistinguishable if you will as being those on spectrum now, but

one would have to be with my children for a time to see of it. Such

as today my 13 year old Missy who most claim do not appear to be

with autism anymore was to be standing on top of a table at

mcdonalds this day and when I to turned to see of this had to cue

her this is of not a good choice and that socially 13 year olds do

not stand on tables. so is she really cured or indistinguishable? I

to mean if she was of typcial in all fashions would she not be to

know naturally that this is not an acceptable choice for a 13 year

old girl to do.

yet she got down and later was speaking to the 15 year old daughter

of my friend I to knowed for much years and had worked for her son

with autism years ago. Her and this 15 year old to e to seemed so

much like typical teen girls in words and thinking on boys. So while

my missy can appear much functional and able she is still challenged

by many things that are to still be present that to me is reflective

of spectrum in her. she is not cured and not really

indistinguishable but I to use that word because of the meaning it

is of to stnad for because over all to most she will appear that way

but to me as her mommy I to know of the truth of my daughters real

challenges still in life. those that know of spectrum and know of me

and has of exposure to my kids can also see of it much strongly too.

but first exposure and if brief few can tell.

Sondra

[Guest guest]

I've often wondered why treatments that help so many are not being

widely reported, but then stupid stuff, like the recent study that

proves the entire brains of people with autism work differently, not

just one little region. I mean, c'mon, haven't we known that for a while?

DAN! reports over 1,000 kids as being " recovered " that they know of.

Then there's the RDI group, the ABA group, etc. I saw a video online

somewhere of many of the DAN! people who said they have recovered, but

I can't find a link now. People, in general, just don't publicly share

stuff about their family. My own grandmother has been cancer-free for

9 yrs but she doesn't tell a soul about her success or reach out to

the cancer community at all. I think those who are vocal are more

outgoing or feel a call to the community, or both. I know in our

county we have 400 students with autism, not to mention adults and

kids who aren't publicly schooled. Yet we have very few families who

actually participate in autism events or even talk about it.

One thing I would like to share with those of you on spectrum (and

i've said I might be somewhere in that). When I was younger I thought

I was the only one who saw things differently from " everyone else " and

the only one who felt insecurities of who I am, etc. But you know

what, since I've become and adult and listened to many people, the

feelings those on spectrum share about feeling different are universal

feelings. Valedictorians say they felt stupid in school. Cheerleaders

and homecoming queesn say they never feel approval or acceptance.

Beautiful girls say they felt ugly and were told so. People who write

poetry and have imaginations have been told they are crazy and feel

unaccepted.

I have yet to meet a person who has felt completely appreciated for

who they are. I have yet to meet a person who feels they see things

just like everyone else. I see it now in my own kids NT and ASD, fear

of not being fully accepted. I guess what I'm wondering is how a

person with autism is any different as to acceptance as anyone else.

Yeah, there may be a label there of autism, but it's really not any

different than anyone else. There are NT people who feel extreme

anxiety to the point of shutting down during situations others do fine

in. Is that autism, or is it the same misfiring of neurotransmitters

in both people? There are NT people who have sensory dysfunction, so

why is that NT person NT?

I guess my point is that if people want to help their kids with autism

not have neurotransmitters misfiring and help their kids understand

how to recognise facial changes, that is a good thing. My child with

ASD in my eyes has the ASD label as it relates to how her body works.

Her personality is her personality. Like a person with cancer, they

often change personality-wise in relation to the emotional changes of

having had cancer. But getting rid of the cancer is a good thing,

enjoying the person's emotional changes as a result is the person's

personality and killing the cancer doesn't mean the person is less

enjoyable. A kid with diabetes has a different perspective on life

than a kid who doesn't have to prick their finger 6 times a day, but

to allow the kid to make insulin is a good thing; however, the person

will be forever changed because of the experience and learning that

took place.

I dunno what my point is, except to say maybe people with autism don't

realize how universal their feelings of rejection are. Yeah, people

with autism may be teased and tormented, so are NT people. Not to say

it's okay, but to say that NT people can and often do experience the

same issues. I was often picked on and treated poorly by my family

because I was overweight after being molested and no one in the family

knew it. But I'd still do what ever I could to help kids be healthy, I

wouldn't want kids to be fat just for the sake of acceptance, it's not

healthy. Same with kids with autism, I wouldn't want them to have

chronic metal poisoning for the sake of worldly acceptance. If a

person happens to see a different shape from a cloud or can decode

complex musical compositions, all the better the world is, but I call

that a gift.

Would I want a child to be mercury poisoned or have gut dysbiosis if

it meant it was the only way the child could posess the gift? That

seems to me to be the bottom line of cure vs. no cure. I think God

allows us to have less in some areas so we can have more in others.

Like a deaf person who can play the piano or a blind person who can

paint beautiful pictures. But do we credit the beautiful pictures on

the blindness or was it a gift the person always posessed?

Debi

>

> that is of hard to me to now have read of recovered kids but never

> met of them so cant know of it.

>

> I to feel health wise one can improve thus lessensing the symptoms

> of autism to a mild or significant degree and feel parent reports

> are often more than (anedotal?) But parts of me also wonders if what

> is in play is that, that particular child might have maked this sort

> of progress due to the progressions of their level of autism. no one

> to me can determine of the outcome or level of degree to autism that

> will be of a permanent state to me of the very young childrens.

> Whatmight appear early on as maybe a severe or moderate classical

> form of autism in 2-3 years might progress to a level of high

> functioning autism or an Aspergers dx. ( to me, clarifying, that HFA

> does not mean intellect to me but higher functining ability in the

> core areas but still considered autistic not aspergers syndrome).

>

> So it is hard to base the progression on just biomedical

> interventions alone, but then one wonders if no biomedical

> intervention would the child had maked the gains anyways, such as

> self had no intervetions, no diets, no biomeidcal as child growing

> up but over life of me did progress to a level of being more HFA

> than the begin states of functioning for me. As adult many will

> assume that HFA and Aspergers are the same or at least look alike. I

> to think the marker is that those with HFA had the classical profile

> and lacked language (speech) or fucntional speech early on... whre

> as with true AS I to think they had of early speech just not

> functional conversational language.

>

> So as shared lack what is of true or not true of the said recovered

> childrens and think if the numbers of recovered kids are of

> recovered why are they not models so to speack of media and medical

> examples in a higher media/medical known fashions. If ones child

> hasd of a rare things of felt to be no cure and is of cured I to

> wonder why they would opt to keep it all secret and not make of it

> public.

>

> Some of my childrens are very functional and can appear

> indistinguishable if you will as being those on spectrum now, but

> one would have to be with my children for a time to see of it. Such

> as today my 13 year old Missy who most claim do not appear to be

> with autism anymore was to be standing on top of a table at

> mcdonalds this day and when I to turned to see of this had to cue

> her this is of not a good choice and that socially 13 year olds do

> not stand on tables. so is she really cured or indistinguishable? I

> to mean if she was of typcial in all fashions would she not be to

> know naturally that this is not an acceptable choice for a 13 year

> old girl to do.

>

> yet she got down and later was speaking to the 15 year old daughter

> of my friend I to knowed for much years and had worked for her son

> with autism years ago. Her and this 15 year old to e to seemed so

> much like typical teen girls in words and thinking on boys. So while

> my missy can appear much functional and able she is still challenged

> by many things that are to still be present that to me is reflective

> of spectrum in her. she is not cured and not really

> indistinguishable but I to use that word because of the meaning it

> is of to stnad for because over all to most she will appear that way

> but to me as her mommy I to know of the truth of my daughters real

> challenges still in life. those that know of spectrum and know of me

> and has of exposure to my kids can also see of it much strongly too.

> but first exposure and if brief few can tell.

> Sondra

>

[Guest guest]

I am new to the list so I should start with a short intro. Some of

you may already know me from other lists. I have 5 kids with one boy

with aspergers and another boy with autism. Someone suggested I

might be interested in joining because even though I have never been

formally diagnosed, I am certain I am aspergers myself. Maybe

sharing experiences from my childhood might help others learn more

about what life might be like for their daughter.

I have heard of very young kids that have lost their diagnosis and I

personally believe they were autistic but they were caught early

enough to reverse the damage. I have never seen other kids in this

category personally but I do know my 4th child appeared to be

regressing when I changed his diet at 10 months of age and within 2

months he had no symptoms and had caught up developmentally. Was he

regressing into autism? I don't know for sure but I believe so.

I have met older kids that were termed " cured " and in my opinion they

are still autistic. Their obvious symptoms are gone but the rigidity

is still there. Autism is not just a list of symptoms but a way of

thinking and dealing with life. When I tell others that have met me

face to face that I am aspergers, they will often respond " but you

are looking at me when I talk " or " you speak so well " . What they

don't realize is I have to think about looking at them and it is

uncomfortable but I do it because I was taught it was polite. If I

think about it too much though, I find it is hard to listen to what

is being said because so much concentration is put on the eye

contact. As for speaking well, what they are forgetting is those

with aspergers often have areas of interest that they like to talk

about. When the subject of conversation is in my area of interest, I

have no difficulty talking to others. Internally, autism is very

real but I have learned to hide it well.

I have been intrigued with RDI because unlike ABA which deals with

the symptoms of autism, RDI tackles the core deficits of autism. In

the DVD on RDI, it is remarkable to see the improvement of some of

the kids and some I would say are in fact " cured " . There is mention

that the activities are developed with rewiring the connections in

the brain in mind and to me, it makes perfect sense.

When I think of my boys, my focus is not on seeking a cure but

seeking for them to reach their full potential. Isn't that what all

parents want? This way of thinking keeps in mind the individuality

of the child and simply wanting the best for her.

As an adult, I am still finding ways to make life easier and my

thinking clearer. I have tried the GFCF diet which didn't change

anything but I have found that food additives such as red dye, MSG

and nitrates affect me. They cause cravings, difficulties

controlling my temper, fuzzy memory and the list goes on. With those

things out of my diet, life is easier but I still have other areas I

struggle with daily. Is it too late for me? I don't know. Do I

want to be cured? That is a tough question. My first thought is to

say yes but when I try to picture it, I find it scary. Does a blind

person want to gain sight fearing he would not have as great hearing

or sense of touch? I wouldn't think so. What makes this issue

different is people on the spectrum don't like change and to no

longer be autistic is one of the greatest changes imaginable. I

suspect those that fear being " cured " really fear the unknown.

>

> Since we're talking cure, I'm wondering what those of you on

spectrum

> think of those who have lost their dx? Do you think they never had

> autism, do you think they got treatments to address the biological

> roots soon enough to reverse the changes, or any other thoughts?

>

> I know one little guy whose mother started him gfcf at 17 mos,

within

> a couple of months of when he significantly regressed. He was dxed

> with autism a few months later, but was doing really well. She also

> started on DAN! protocol before the age of 2. Now he's 6 and so very

> mild I probably wouldn't consider him to have autism, more of a

> language delay in his processing. A couple of people have said he

> never had autism, that the mother is crazy. That really isn't fair

to

> the mother, they didn't see how severe his behaviors were or how

many

> professionals have agreed with the dx, or what she's done to help

him.

> She was so proactive so early, I wonder if the interventions sort of

> reversed itself. Just wondering what you all think. At the same

time,

> I know people who have tried interventions that seem to do nothing,

> but those kids are typically older.

>

> Of course, I'm speaking of autism in terms of biological

functioning,

> not personality.

>

> Debi

>

[Guest guest]

Hi ,

Welcome to the group. What a wonderful post! I liked

reading it very much. I know that I too am somewhere

on the spectrum though I have not been diagnosed, so

at times I have extreme difficulties in getting what I

am trying to say across. People often think they get

what I am saying and they don't unfortunately many

times or they only get part of it and they get upset

at me for what I say instead of asking specifics.

Unfortunately because I know I am not completely NT or

completely Autistic I don't feel understood in either

world all the way, but yet I feel that I can at least

relate to both sides. So I appreciated reading your

post because you do seem to have a way with words and

as far as I understood it were very clear with what

you wanted to say, and a lot of what I wanted to say.

I really like from off this list too. She has

Autism but she is so able to say exactly what I was

thinking and trying to say most of the time, but can't

seem to find the right words to say.

Speaking of which, I hope this is making sence. I do

just want to say thanks for joining the group and

welcome. Sorry I was late responding to you, but I am

quite busy with life and barely got the chance to

catch up on my e-mails and stuff today.

Thanks again, Esther

--- cubicmonica wrote:

> I am new to the list so I should start with a short

> intro. Some of

> you may already know me from other lists. I have 5

> kids with one boy

> with aspergers and another boy with autism. Someone

> suggested I

> might be interested in joining because even though I

> have never been

> formally diagnosed, I am certain I am aspergers

> myself. Maybe

> sharing experiences from my childhood might help

> others learn more

> about what life might be like for their daughter.

>

> I have heard of very young kids that have lost their

> diagnosis and I

> personally believe they were autistic but they were

> caught early

> enough to reverse the damage. I have never seen

> other kids in this

> category personally but I do know my 4th child

> appeared to be

> regressing when I changed his diet at 10 months of

> age and within 2

> months he had no symptoms and had caught up

> developmentally. Was he

> regressing into autism? I don't know for sure but I

> believe so.

>

> I have met older kids that were termed " cured " and

> in my opinion they

> are still autistic. Their obvious symptoms are gone

> but the rigidity

> is still there. Autism is not just a list of

> symptoms but a way of

> thinking and dealing with life. When I tell others

> that have met me

> face to face that I am aspergers, they will often

> respond " but you

> are looking at me when I talk " or " you speak so

> well " . What they

> don't realize is I have to think about looking at

> them and it is

> uncomfortable but I do it because I was taught it

> was polite. If I

> think about it too much though, I find it is hard to

> listen to what

> is being said because so much concentration is put

> on the eye

> contact. As for speaking well, what they are

> forgetting is those

> with aspergers often have areas of interest that

> they like to talk

> about. When the subject of conversation is in my

> area of interest, I

> have no difficulty talking to others. Internally,

> autism is very

> real but I have learned to hide it well.

>

> I have been intrigued with RDI because unlike ABA

> which deals with

> the symptoms of autism, RDI tackles the core

> deficits of autism. In

> the DVD on RDI, it is remarkable to see the

> improvement of some of

> the kids and some I would say are in fact " cured " .

> There is mention

> that the activities are developed with rewiring the

> connections in

> the brain in mind and to me, it makes perfect sense.

>

> When I think of my boys, my focus is not on seeking

> a cure but

> seeking for them to reach their full potential.

> Isn't that what all

> parents want? This way of thinking keeps in mind

> the individuality

> of the child and simply wanting the best for her.

>

> As an adult, I am still finding ways to make life

> easier and my

> thinking clearer. I have tried the GFCF diet which

> didn't change

> anything but I have found that food additives such

> as red dye, MSG

> and nitrates affect me. They cause cravings,

> difficulties

> controlling my temper, fuzzy memory and the list

> goes on. With those

> things out of my diet, life is easier but I still

> have other areas I

> struggle with daily. Is it too late for me? I

> don't know. Do I

> want to be cured? That is a tough question. My

> first thought is to

> say yes but when I try to picture it, I find it

> scary. Does a blind

> person want to gain sight fearing he would not have

> as great hearing

> or sense of touch? I wouldn't think so. What makes

> this issue

> different is people on the spectrum don't like

> change and to no

> longer be autistic is one of the greatest changes

> imaginable. I

> suspect those that fear being " cured " really fear

> the unknown.

>

>

__________________________________________________

[Guest guest]

Hi ,

Welcome to the group. What a wonderful post! I liked

reading it very much. I know that I too am somewhere

on the spectrum though I have not been diagnosed, so

at times I have extreme difficulties in getting what I

am trying to say across. People often think they get

what I am saying and they don't unfortunately many

times or they only get part of it and they get upset

at me for what I say instead of asking specifics.

Unfortunately because I know I am not completely NT or

completely Autistic I don't feel understood in either

world all the way, but yet I feel that I can at least

relate to both sides. So I appreciated reading your

post because you do seem to have a way with words and

as far as I understood it were very clear with what

you wanted to say, and a lot of what I wanted to say.

I really like from off this list too. She has

Autism but she is so able to say exactly what I was

thinking and trying to say most of the time, but can't

seem to find the right words to say.

Speaking of which, I hope this is making sence. I do

just want to say thanks for joining the group and

welcome. Sorry I was late responding to you, but I am

quite busy with life and barely got the chance to

catch up on my e-mails and stuff today.

Thanks again, Esther

--- cubicmonica wrote:

> I am new to the list so I should start with a short

> intro. Some of

> you may already know me from other lists. I have 5

> kids with one boy

> with aspergers and another boy with autism. Someone

> suggested I

> might be interested in joining because even though I

> have never been

> formally diagnosed, I am certain I am aspergers

> myself. Maybe

> sharing experiences from my childhood might help

> others learn more

> about what life might be like for their daughter.

>

> I have heard of very young kids that have lost their

> diagnosis and I

> personally believe they were autistic but they were

> caught early

> enough to reverse the damage. I have never seen

> other kids in this

> category personally but I do know my 4th child

> appeared to be

> regressing when I changed his diet at 10 months of

> age and within 2

> months he had no symptoms and had caught up

> developmentally. Was he

> regressing into autism? I don't know for sure but I

> believe so.

>

> I have met older kids that were termed " cured " and

> in my opinion they

> are still autistic. Their obvious symptoms are gone

> but the rigidity

> is still there. Autism is not just a list of

> symptoms but a way of

> thinking and dealing with life. When I tell others

> that have met me

> face to face that I am aspergers, they will often

> respond " but you

> are looking at me when I talk " or " you speak so

> well " . What they

> don't realize is I have to think about looking at

> them and it is

> uncomfortable but I do it because I was taught it

> was polite. If I

> think about it too much though, I find it is hard to

> listen to what

> is being said because so much concentration is put

> on the eye

> contact. As for speaking well, what they are

> forgetting is those

> with aspergers often have areas of interest that

> they like to talk

> about. When the subject of conversation is in my

> area of interest, I

> have no difficulty talking to others. Internally,

> autism is very

> real but I have learned to hide it well.

>

> I have been intrigued with RDI because unlike ABA

> which deals with

> the symptoms of autism, RDI tackles the core

> deficits of autism. In

> the DVD on RDI, it is remarkable to see the

> improvement of some of

> the kids and some I would say are in fact " cured " .

> There is mention

> that the activities are developed with rewiring the

> connections in

> the brain in mind and to me, it makes perfect sense.

>

> When I think of my boys, my focus is not on seeking

> a cure but

> seeking for them to reach their full potential.

> Isn't that what all

> parents want? This way of thinking keeps in mind

> the individuality

> of the child and simply wanting the best for her.

>

> As an adult, I am still finding ways to make life

> easier and my

> thinking clearer. I have tried the GFCF diet which

> didn't change

> anything but I have found that food additives such

> as red dye, MSG

> and nitrates affect me. They cause cravings,

> difficulties

> controlling my temper, fuzzy memory and the list

> goes on. With those

> things out of my diet, life is easier but I still

> have other areas I

> struggle with daily. Is it too late for me? I

> don't know. Do I

> want to be cured? That is a tough question. My

> first thought is to

> say yes but when I try to picture it, I find it

> scary. Does a blind

> person want to gain sight fearing he would not have

> as great hearing

> or sense of touch? I wouldn't think so. What makes

> this issue

> different is people on the spectrum don't like

> change and to no

> longer be autistic is one of the greatest changes

> imaginable. I

> suspect those that fear being " cured " really fear

> the unknown.

>

>

__________________________________________________