Debate on acceptance/treatment

Discuss autism theories, media stories, and efforts to put ASD on the government agenda here.

Moderator: ModeratorBill

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mom_of_an_autie
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Postby mom_of_an_autie » Fri May 26, 2006 10:46 pm

Bill Said:


There IS a faction out there that think that we should embrace what is going on with our children and NOT try to change them...



Does that only apply to therapies outside the mainstream? I would think if they are so against changing their children they wouldnt even be interested in ST or OT either. Wouldnt those interventions also "change" who they believe their children are meant to be? To me it would seem hypocritical to say we should accept our children for who they are and not try to change them but say OT, PT and ST would be ok.


So what exactly is the defintion for acceptance? Does acceptance mean no interventions at all?

give a mouse a cookie
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Postby give a mouse a cookie » Sun May 28, 2006 3:53 pm

I need to think up a slogan...oh yea, IT'S THE GUT STUPID.


Bill-
With MY kid, It's NOT the gut, stupid!
Nor is it mercury poisoning--it's autism

No diarrhea, no constipation, no screaming in pain. His gut is just fine, thanks.
Did it ever occur to you that your child's gut issue (just possibly) has nothing to do with their diagnosis of autism?
Here's a thought: Don't limit the study to only children with autism. Let's find out how many children in the general population have gut issues. Maybe, just maybe, kids with autism are more prone to gut issues due to their limited diets. Some kids with autism are very picky eaters, ya know. Just like normal kids are sometimes very picky eaters.
Oddly, my NT daughter is more prone to gut issues than my ASD son. Go figure.

mom_of_an_autie said:
Does that only apply to therapies outside the mainstream? I would think if they are so against changing their children they wouldnt even be interested in ST or OT either. Wouldnt those interventions also "change" who they believe their children are meant to be? To me it would seem hypocritical to say we should accept our children for who they are and not try to change them but say OT, PT and ST would be ok.


So what exactly is the defintion for acceptance? Does acceptance mean no interventions at all?


So now, I have gone from being a child abuser (because we don't do biomed) to a hypocrite? Talk about calling people names...
What a load of crap. Come on, acceptance doesn't mean no intervention at all. My son has flourished with his preschool, OT and Speech included. Do we accept him unconditionally? Absolutely. Is he a happy kid? Absolutely. Can he communicate more effectively after his Speech Therapy of the last two years? Of course. HOWEVER, some autistic children will never speak. That's a fact. Would we have continued speech therapy if he had two years and not a single word, still? Probably not. Some autistics are destined to not speak, ever. There are sign language and facilitated communication devices for them to utilize. NOT the end of the world.
I feel sorry for you. You just don't get it.
There are MANY parents who don't feel that a diagnosis of autism is the end of the world. We don't feel a need to try and change our kids into someone indistinguishable from their peers. We are not striving to have a diagnosis removed, only to help them function in the world and be happy with themselves.
What kind of a message are you sending to your child with all of your creams, injections, HBOTs, supplements, etc? That they are just fine the way they are? No, you won't be happy until they are label-free, NT and just like all the other kids. Which will probably never happen.
If you really want to know what acceptance is about, try educating yourself on the matter. Read Jim Sinclair, Michelle Dawson and ballastexistenz. You can find links on Autism Diva's blog to many others who embrace acceptance. I personally adore Kristina Chew's blog about her son Charlie.
Don't slam what you haven't taken the time to research. I don't slam biomed--just don't do it ourselves. If my son had gut issues or metals toxicity I would make an effort to address these issues. I read about it, researched it, and came to the conclusion that we didn't need biomed interventions. I was not about to sink a bunch of $$ into "treatments" when the only evidence that they work is anecdotal. You can post all the pics of your kid's sh*t you want. I remain unconvinced.
For those of you interested, I am considering starting a new forum for non-biomed parents. I like the advice that I see in the Support, Advice and Education section of the fourm, but I am becoming weary of being called a hypocrite and child abuser for my non(not anti)biomed approach.
And here's another tidbit for you. Maybe if your kid has severe "gut issues" or mercury poisoning, they are not autistic at all, only showing autistic behaviors. Big difference. Many disorders and illnesses manifest themselves with autistic behaviors. Once you "cure" the gut issues or metal problems then they are no longer autistic? If you can remove a diagnosis of autism, then they weren't autistic in the first place. Autism is forever.
Last edited by give a mouse a cookie on Mon May 29, 2006 11:35 am, edited 1 time in total.

mom_of_an_autie
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Postby mom_of_an_autie » Sun May 28, 2006 8:50 pm

Mouse arent you being a bit defensive? First I want to say my questions WERE NOT directed towards you nor have I EVER called you or anyone else a child abuser. I was simply asking question to try to find out exactly what acceptance means to people who encourage it. It seems to me that if you are accepting your child for who they are you would use NO interventions at all. You said yourself that speech therapy does not work for all kids and you are right about that but that does not mean some biomedical interventions arent whats appropriate for some kids on the spectrum.

As for me "not getting it" and you feeling sorry for me arent you being a bit dramatic here? I mean after all you dont know me or any of the things I do or dont do for my child. You dont know whether or not I have accepted my sons autism do you? I think you have taken the posts by some on this message board and use that to make sweeping generalizations about anyone who does use alternative therapies or does not agree with you.

You also asked "What kind of a message are you sending to your child with all of your creams,injections,HBOTs,suppliments,etc?" Let me answer that. We are on a GF/CF diet for my son and also free of eggs, soy and peanuts due to food intollerances. We use a multivitamin and give him a probiotic in his apple sauce every day. We treated him for a yeast and bacteria overgrowth back in February. Thats it thats all we have done for our son. He has shown DRAMATIC improvements on the diet so after MUCH consideration and RESEARCH into all the "other" therapies out there we (my husband and I) have decided we are happy with our course of action and feel at this point we do not need to go any futher.

Is my son a happy kid? Yes he is now that he is NOT having explosive diarrhea. Does he have a limited diet even with his dietary restrictions? No my son has a more varied diet now and in fact LOVES to eat vegetables and fruits. Is he traumatized by the probiotic in his fruit? No he gets the bottle out of the freezer for me.


You stated "you wont be happy until they are label-free, NT and just like all the other kids" Well mouse you couldnt be more wrong on this point. First I do NOT put a label on my son other than calling him my precious child. As far as the "label" he carries in public (school) I will NEVER allow them to remove his dx since autism is a life long condition. I will Not let them take away any services he is entitled to as long as he needs them. (If that means for life then so be it).


Thank you for the referrals to Jim Sinclair, Michelle Dawson and ballasexistenz. I didnt "slam" acceptance. I was simply asking a question and looking for clarification on what it meant to others. It does seem hypocritical to me to say we accept our child for who they were born to be but we will give them therapies we agree with and the others we dont agree with we will leave to the parents who are trying to "change/cure" their kids. Do you not see how that looks/sounds? May be you dont. Thats ok. Sometimes we see what we want to.


Your post could have gone much differently. You could have just explained your point of view and listed the referrals with out being so vicious and nasty. Just like you wish to express your opinion I am also entitled to mine. How do you expect to have someone understand where you are on your path when you jump and assume about others? Just something to think about.....

sashasmom
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Postby sashasmom » Sun May 28, 2006 9:17 pm

Hey mom_ of_an_autie would you call me! I have so much to talk to you about! If you still need my # just email me. We have some GREAT things planned for Sasha in July. (sorry to go off topic) :D
-Crystal

Missy Nadeau
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Postby Missy Nadeau » Sun May 28, 2006 9:25 pm

Jeepers, creepers people!! Here we go again! :x :x PLEASE webmaster could we add a section just for debates! This is driving me crazy!!! :shock: :? :(

livsparents
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Postby livsparents » Sun May 28, 2006 9:53 pm

OK, claws back in cookie...
I was not relating my childs gut issue NECESSARILY to CAUSING autism, I am railing against a mainstream that does not take some or many of the issues relating to autism seriously. By the same token that your child does not have gut issues, why does that negate the fact that mine and many do, how could you start at the point that there is NOT a correlation when a large percentage do have gut issues?
Why should treatment stop at diagnosis? I hear many say that I picked a couple of bad apples with the doctor I saw, but I find (anectdotally sic? of course, sorry I have not done a thorough study) that many to most of us have run into doctors who don't know ANYTHING about the disorder! Please don't turn doctors' and the CDC's incompetance in dealing with autism treatments into another argument about thimeresol and mercury. It IS about the gut and the allergies and the stims and the language and the socialization and coordination and insomnia, tics and every other symptom of austism. In short, to restate my T-shirt, "it's about TREATMENT, stupid". That could be used by BOTH sides, couldn't it?

Others are railing against the apparent hypocracy of what therapies are 'acceptable' for assisting our children. At what therapy/treatment and what age do you draw the line? I'm sure I am not damaging my daughter's psyche by all the things I do; she's three first of all, and I will show her I love her more than life no matter who she becomes (as with all my kids). I am just doing what I feel is right to develop my child to her full potential, not change her into an automaton so I won't be embarrassed in my circle of freinds and neighbors. I see her as a developing brain that will be 'set' in a couple of short years. Maybe I should have thought about it that same way with my NT kids; for Liv, I'm fighting for the same thing as you...for her to function in society and be happy...
By your logic we should not treat a kid with bipolar because it might damage their self-esteem, ditto giving kids tudoring, ADHD medications. Maybe I should not say something to my older daughter when she tries to go out the door in clothes that clash...stifling her individuality. The fact is that NO kid is fine the way they are, we mold them, shape them, guide them; some think that treating them with various medical, biomedical, and every interpersonal therapies out there are OK too. Doesn't make you, me or ANYONE a monster. It makes us parents. We all have different ideas of parenting.
I again ask: At what therapy/treatment and what age do you draw the line? And don't draw me the obvious circles around what is dangerous and absurd; gimme the lines between the gray areas; the ones where an adult aspy would find it dispicable to put them through, but a two year old would find them as natural as drinkng out of a cup...

Tired, ranting, HOPEFUL and determined (and still working within the boundaries of not attacking personally), Bill

littlebopeep
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Postby littlebopeep » Sun May 28, 2006 10:15 pm

Missy Nadeau wrote:Jeepers, creepers people!! Here we go again! :x :x PLEASE webmaster could we add a section just for debates! This is driving me crazy!!! :shock: :? :(


This is a controversial subject and it is in the right section. I applaud those who debate. Just don't read this thread if it bothers you. Some of us find it interesting.
Fred, 7, NT
Barney, 5, autism

Gabesmom
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Postby Gabesmom » Mon May 29, 2006 2:59 am

All right, I probably ought to go to bed, but I felt a need to jump in and defend GMAC. I got to my breaking point on a different controversial thread, even though I had really, really tried to maintain my composure. Mom of an autie, I personally didn't see your question as inflammatory, but what you must understand is that people who take the "acceptance path" are frequently attacked by some parents who are pursuing more aggressive treatment options. There are people who insinuate that the only reason that we do not subscribe to many of the untested, potentially unsafe treatments is because we're afraid that everyone else will miraculously cure their children, and our kids will be the only ones left with autism. This is, of course, a completely ludicrous idea, but one which has been suggested (in all apparent seriousness) on many occasions. Just check out some of the previous controversial threads and you will see for yourself. In additon, many people who don't know any better do tend to interpret acceptance as doing nothing and accuse parents of not trying to help their children. Nothing could be further from the truth. Parents who are accepting of their children tend to treat them in the same way as they would an NT child, helping them to overcome their weaknesses while focusing on their strengths- promoting their self-esteem and self-worth by providing unconditional love and support, allowing them to be the people they were born to be while instilling a sense of morality and an obligation to the larger community. I think you would be hard pressed to find "acceptance parents" who do not use some sort of therapy with their children, even if it is ecclectic or self-invented or adapted. They look at their children as unique individuals who are entitled to respect and love and security and freedom from unnecessarily harsh or restrictive therapies. Every child is different. The autism label does not make this any less true for our children. Not everyone believes that their child needs to be changed to the point that they blend inconspiculously into the larger population (and yes, this is another view that has been expressed by some of the biomed enthusiasts on this board, though not all). Hey, when all of those other kids are jumping off the proverbial cliff because the most popular kid did it, I would rather that my kid could care less about the opinions of his peers than to follow the other sheep (I mean kids) to his death. Not needing to be like other people is just one of the many traits that some autistic people have that I personally believe can be very positive. Why would I want to change that? :) And Littlebopeep, ditto.
Jennifer, Mother to Anna, 5 (NT), Gabriel, 4, Autistic

littlebopeep
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Postby littlebopeep » Mon May 29, 2006 7:23 am

livsparents wrote: I'm fighting for the same thing as you...for her to function in society and be happy...
Bill


We are more or less "acceptance" parents and yes, we want our children to be happy. "Function in society" would be fine, but it's not our pot of gold with Alex. IMO, the big difference between your and our view of autism is that we're not fighting anything. We are educating ourselves about how he learns and thinks and loves and we are helping him to learn and think and love. That's pretty much it. We enjoy Alex's company enormously and spend little time thinking about his autism.

Therapies like ST, OT and pre-school don't seek to eradicate an autistic child's natural way of being. Rather, they (to generalize, of course) aim to facilitate and improve certain skills, taking autistic proclivities into account.

Some bio-med is OK in my book if a child has great physical misery that prevents him from learning. But putting unproven and dangerous cr*p into a child's body in an effort to make him look and act NT, i.e. "recover him," is a crime. I agree with GAMAC: if a child "recovers" through chelation and (shudder) Lupron, he never really had autism in the first place, only autistic-looking symptoms.
Fred, 7, NT

Barney, 5, autism

Mary
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Postby Mary » Mon May 29, 2006 9:27 am

Therapies like ST, OT and pre-school don't seek to eradicate an autistic child's natural way of being. Rather, they (to generalize, of course) aim to facilitate and improve certain skills, taking autistic proclivities into account.


Intensive early intervention does seek to dramatically change a child's brain wiring and way of being. Especially ABA, which is an educational (non-biomedical) treatment. Although some people, like myself and Winnie, have gotten dramatic results from ABA, other people here, like Kev, have criticized it. To each his own.

I'm not sure where this "child abuse" argument comes from, except I do remember one person who posted that she wanted to report parents who do biomedical treatments to social services for child abuse. That was one extreme post, and one or two people who don't do biomedical urged that person to re-think that idea. And I think she/he eventually did so.

Regarding's Bill's comment about "fighting": I think people should look at the broad picture. If you live in a community where everyone accepts your child and believes he belongs in a public school classroom with his nondisabled peers, then count your lucky stars! If no one makes rude comments to you when your child misbehaves in a store, then again, you are lucky!

Many of us live in areas where we do have to "fight": fight for acceptance of our children by nondisabled people, by community schools, by neighbors, by strangers in stores, by others. I wish I had a dollar every time I was told, "Isn't it nice that they LET your child go to school with normal kids?" For me, fighting means politely educating the person, by explaining that it's my child's right to attend school with his neighbors and be part of the community.

Fighting for our children to have their rightful place in our communities has NOTHING to do with biomedical treatments.

The original question that was asked was an interesting one: Does "acceptance" mean you don't do anything to treat autism?

There have been many posts by parents who don't do much/any biomed about acceptance. Others have inferred from those posts that these people believe parents who do biomed don't accept their kids. I don't pretend to know what anyone believes. However, it's obvious that the equation, doing biomed or ABA = not accepting your child, is silly.

Whether you do just intensive biomedical treatments, or 40 hours per week of ABA only, or both biomed and ABA, or just a few hours per week of speech only, you can still accept your child's autism. I don't know where the notion started that people who try to aggressively help their child with autism are somehow not accepting of them. It leads to the similarly mistaken idea that true acceptance means doing nothing to help your children reach their potential.

We send our NT kids to school even if they're not naturally inclined to academics, because we want to help them be the best they can be and learn new skills. Our children with disabilities are no different, they just may require more help to be the best they can be. What kind of "help" depends on each family and each child.

The sad thing about these polarizations is that people really need to focus on autism being a spectrum, from mild to severe, and also EACH CHILD IS DIFFERENT EVEN WITHIN THAT CLASSIFICATION. It's silly to judge a parent for following a different path than yours because you don't live with that child and know what he needs.

Disclaimer: None of the previous statements were directed at any individual, nor should you infer that I think anyone believes any of the things I just discussed. I was referring to general impressions I get when reading threads, and have conflated some posts and taken others to conclusions not reached by their authors to illustrate a point. I actually believe most people here don't hold extreme views of their fellow parents raising a child with autism.

dgdavis64
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Postby dgdavis64 » Mon May 29, 2006 10:06 am

Mary,
Excellent post, very well said :!: :!:

I think we all take issue with the extreme generalizations from one side to the other and realize everyone is probably somewhere in the middle.

No matter what works best for our kids, we have to respect that parents on either side of this (biomed/ABA) are doing what they think is right for their own kids.

Ultimately, we all just want our kids to grow up to be happy adults. Isn't that what EVERY parent wants?


I'd also like to add that just because we may not agree with every other parents choice of treatment for their kids, it's not fair to discriminate against the parents we don't agree with. Especially on issues other than biomed/ABA.
Agreeing to disagree on some things is just a fact of life.

Beware of the pharma trollbot shills posting from anonymous proxy servers

mom_of_an_autie
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Postby mom_of_an_autie » Mon May 29, 2006 12:40 pm

Gabesmom you said:


"Mom of an autie, I personally didn't see your question as inflammatory, but what you must understand is that people who take the "acceptance path" are frequently attacked by some parents who are pursuing more aggressive treatment options. There are people who insinuate that the only reason that we do not subscribe to many of the untested, potentially unsafe treatments is because we're afraid that everyone else will miraculously cure their children, and our kids will be the only ones left with autism. This is, of course, a completely ludicrous idea, but one which has been suggested (in all apparent seriousness) on many occasions. Just check out some of the previous controversial threads and you will see for yourself."



Which is exactly why I told her NOT to assume everyone on this board who does not follow the same path as her condems her for doing so. However in my opinion it makes her just as bad as the people making such extreme statements. I dont need to reference previous threads I know who has made uneducated statements no matter which path they follow ( and yes it is from both sides since people have drawn their lines in the sand between doing biomed and not doing biomed) I read all of the threads on this board I just usually do not choose to get involved since neither side is 100% right.



You said:

"In additon, many people who don't know any better do tend to interpret acceptance as doing nothing and accuse parents of not trying to help their children. Nothing could be further from the truth. Parents who are accepting of their children tend to treat them in the same way as they would an NT child, helping them to overcome their weaknesses while focusing on their strengths- promoting their self-esteem and self-worth by providing unconditional love and support, allowing them to be the people they were born to be while instilling a sense of morality and an obligation to the larger community. I think you would be hard pressed to find "acceptance parents" who do not use some sort of therapy with their children, even if it is ecclectic or self-invented or adapted. They look at their children as unique individuals who are entitled to respect and love and security and freedom from unnecessarily harsh or restrictive therapies.


I guess my question to you Gabesmom would be. Why do you think this is only true of "acceptance parents"? I would like to think that all parents of children on the spectrum do this. (although I am not too naive to know there are just some bad parents out there no matter whether the child has autism or is NT)
I treat my child as I would any NT child, I help him overcome weaknesses and focus on his strengths to do so. I unstill in him EVERYDAY a sense of pride at all his accomplishments, he gets unconditional love and support from his father and I (I finally understand the true meaning when someone says "He hung the moon") I have taught him good morals and behavior which he is sometimes complimented on in public for (saying please, thank you,bless you and your welcome)although not always since he is only three. I see my son as a unique person put here on earth to live a happy, healthy life and with my guidence he will do so.
Gabesmom by your definition wouldnt that make us all "acceptance parents"?


I have read threads where parents following a biomedical route with their children have been questioned as to their choice of therapy and doctor. I have seen these same parents all but called liars for reporting gains in their kids with different therapies. I have seen where these parents have been called child abusers because someone else does not agree with their point of view. In my opinion that is not acceptable. If someone has concerns about a treatment option feel free to post your information you just may change that parents mind or give them another way of looking at it. But Dont be sarcastic and down right nasty to make that point because I can assure you, you will push that person even futher away from your point of view. NO ONE is wrong in their approach at "dealing" with their childs autism.


littlebopeep you said:

"Therapies like ST, OT and pre-school don't seek to eradicate an autistic child's natural way of being."


In my opinion yes they do. If your child has comunication issues and your child gets intensive speech therapy your child may learn to talk or use another form of communication. Now what would happen to the same child without speech therapy? If autism causes a child to not be able to communicate without some assistance or other form of communication Arent you changing that child you try to make him/her more like us NTs who can communicate with each other?

You also said you are "not fighting anything"

I could be going out on a limb here but I think Bill may have been referring to fighting society for what his daughter needs/requires to live a healthy happy life. Bill if I am wrong I am sorry. Those are what we are fighting for for our son.



Mary you said:


"There have been many posts by parents who don't do much/any biomed about acceptance. Others have inferred from those posts that these people believe parents who do biomed don't accept their kids. I don't pretend to know what anyone believes. However, it's obvious that the equation, doing biomed or ABA = not accepting your child, is silly.

Whether you do just intensive biomedical treatments, or 40 hours per week of ABA only, or both biomed and ABA, or just a few hours per week of speech only, you can still accept your child's autism. I don't know where the notion started that people who try to aggressively help their child with autism are somehow not accepting of them. It leads to the similarly mistaken idea that true acceptance means doing nothing to help your children reach their potential."



Well said Mary I dont think it is fair to assume people who do use "alternative" therapies are NOT accepting their child for who they are. Just as I do not believe it is fair to accuse parents who DONT use "alternative" therapies of doing nothing. Everyone has to do what is right for their child/situation.


I think my original question is a fair one. I guess it depends on what acceptance means to each person. IN MY OPINION I still think if you prescribe to the fact you are not trying to change your child or make them NT or indistinguishable from their peers than you would do no interventions at all. Otherwise you are not truly accepting your child for who "they were born to be." I think if you "accept" your childs autism you get to work and do something about it. Whether it be speech therapy OT/PT, ABA , Floortime ,TEACCH, dietary intervention/eliminations , suppliments, vitamins, chelation , HBOT, Lupron or whatever. The one thing that never needs to be debated is how much everyone on this board loves their children and how dedicated they are to improving their childs/childrens life no matter how they go about it. :)

livsparents
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Postby livsparents » Mon May 29, 2006 1:16 pm

give a mouse a cookie wrote:
I need to think up a slogan...oh yea, IT'S THE GUT STUPID.


Bill-
With MY kid, It's NOT the gut, stupid!
Nor is it mercury poisoning--it's autism

No diarrhea, no constipation, no screaming in pain. His gut is just fine, thanks.
Did it ever occur to you that your child's gut issue (just possibly) has nothing to do with their diagnosis of autism?
Here's a thought: Don't limit the study to only children with autism. Let's find out how many children in the general population have gut issues. Maybe, just maybe, kids with autism are more prone to gut issues due to their limited diets. Some kids with autism are very picky eaters, ya know. Just like normal kids are sometimes very picky eaters.
Oddly, my NT daughter is more prone to gut issues than my ASD son. Go figure.



Now who's making a making the scientific stretch...
You have two studies that find a gut/autism link and you want to attribute it to diet? Can't we take the premise now that there IS a gut/autism link and work to DISPROVE? (Sorry to clarify that either autism is causing gut issues or the other way around, just admit that at least for some kids, there is a connection)

This has been and probably always will be my problem. Information misinformation and the doctors and CDC sitting (insurance companies especially! :x )on their hands using autism as a way to either not deal with the medical issues our kids have or discount the steps that the biomedical parents are doing to attempt to help their kids. dgdavis, remember where the biomed parents are coming from. "GFCF diet is not proven" "anything but discreet trial ABA is unproven" "B12 is unproven" "LDN, vitamins, HBOT, music therapy, PECS, signing, Verbal Behavior, is a waste of time and/or money because there is no proof". "Discreet trial ABA is the ONLY PROVEN therapy that improves autistic kids". I know I'm painting a broad brushstroke over ALL types of therapies, doctors, schools and therapists, but that the way it feels for someone looking for an answer. Everyone's got an opinion and no one wants to admit that they don't know.
Again, I'm not looking for that magic pill that will 'cure' her (truth be told, I am, but just like the lottery, I'm not going to 'win' without some kind of miracle). I am looking to assist her with biomed to help her focus on her OT, ST, ABA and life in general. Maybe in a few years I will be more accepting of 'color on the spectum'; forgive me, but because she regressed into her current state I have to think/hope that she might be able to progress out of it.
Linda and I have been remiss in not doing a full blown post on our other daughter, Grace. We need to do that. The fact is she was labeled speech delayed with some autistic tendencies at 1 1/2; just last week we had our 6 month review and they talked about reducing services because of how well she is doing. Now it could be the play therapy she is getting 2X a week, it could be the GFCF diet, it could be the B12 shots she gets every third day. I tend to think it is all three. But just like a baseball player on a hitting streak, it is probably the new stance. It could be the new workout or the new bat or the socks I'm wearing. I'm not about to attribute any one of the things I'm doing to THE thing that is working best, it could have even been natural development. The difference is that the baseball player KNOWS the socks are a superstition, I do not know what are the socks (or if there is even socks IN this equation). I'm going to keep doing all three because it WORKS and her future is on the line...
Bill
Last edited by livsparents on Mon May 29, 2006 1:45 pm, edited 1 time in total.

give a mouse a cookie
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Postby give a mouse a cookie » Mon May 29, 2006 1:44 pm

The original question that was asked was an interesting one: Does "acceptance" mean you don't do anything to treat autism?

That was the bait question. Meant to paint people with a hypocritical brush, no? She stated her position fairly clearly with the following sentences

Does that only apply to therapies outside the mainstream? I would think if they are so against changing their children they wouldnt even be interested in ST or OT either. Wouldnt those interventions also "change" who they believe their children are meant to be? To me it would seem hypocritical to say we should accept our children for who they are and not try to change them but say OT, PT and ST would be ok.


So what exactly is the defintion for acceptance? Does acceptance mean no interventions at all?

Looks like bait to me. Not necessarily directed at me personally. I understand that it was just tossed out there for anyone to jump on. Then, when I did jump on it, I got called on it for doing so.
Your post could have gone much differently. You could have just explained your point of view and listed the referrals with out being so vicious and nasty.

Calling a group of people hypocrites isn't vicious or nasty?
And then this,
How do you expect to have someone understand where you are on your path when you jump and assume about others?

I think the "others" are pretty well-represented and vocal on this board, don't you? I don't have to jump or assume about others, it's all right there in black and white.
Look what happened when Kev was posting on this board. He advocates for acceptance very vocally. I wouldn't say he got a typically warm welcome from the biomed crowd. How many people actually went to his blog with an open mind; to possibly learn something, as opposed to visiting it with the sole purpose of gathering ammunition for an attack? He's got links for many "acceptance" blogs at http://www.autism-hub.co.uk/.
My point is, if you want to know what autistic people have to say about the various interventions, read what they have to say. Please, don't take my word for it.

livsparents
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Postby livsparents » Mon May 29, 2006 1:55 pm

The only two groups being discriminated against in the 'outside' world are the biomedical group and the autistic people themselves...

Mary
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Postby Mary » Mon May 29, 2006 2:18 pm

Give a mouse a cookie,

I didn't see the original poster calling anyone a hypocrite. I thought it was an interesting question, maybe not worded exactly the way you would have worded it, but nonetheless not an attack.

Regarding reading what adults with Asperger's or autism have to say about interventions, I agree that it's very interesting to do so. I have read books and attended lectures by adults who have autism and Asperger's.
As a result, I have heard or read comments from these adults about specific interventions (or lack of interventions!) directed at them in their past.

This is interesting, but may have little relevance to my child's needs (after all, people with autism vary as much as neurotypicals) or my providers of services. Kev said that some adults, in England presumably, have said they hate the ABA they received 20 or more years ago. That doesn't have much to do with the way ABA is provided here in my community in 2006.

Frankly, many NT adults have some terrible stories about lousy or cruel teachers or school experiences. It doesn't mean that all public/parochial education for NT students is bad.

I'm not sure what any of these comments have to do with acceptance, which I think was the point of the original question.

give a mouse a cookie
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Postby give a mouse a cookie » Mon May 29, 2006 2:22 pm

Her post is still there. Granted she didn't say "hypocrites" she said we were "hypocritical" Is there a difference?
Last edited by give a mouse a cookie on Tue May 30, 2006 11:06 am, edited 1 time in total.

mom_of_an_autie
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Postby mom_of_an_autie » Mon May 29, 2006 2:52 pm

Mouse said:

"You don't see her original post re. hypocrites because she deleted it, at least that is what I'm guessing. There I go assuming again."


My original post is still there. I deleted nothing. Look at my original post again there are NO EDITS. The fact of the matter here is that you did not like my question and instead of addressing the question you are deflecting from the issue by stating I deleted where I called someone a hypocritewhich NEVER happened. Like I said sometimes we see what we want to see. You saw a post you didnt like and decided to make it ugly instead of just debating the issue. You choose to call what you dont like a bait question and thats fine, its your right but it IS possible to have a discussion like adults on issues not everyone is going to agree on. So if you want to talk about what acceptance means WITHOUT being so emotional lets do so.



You also said:

"My point is, if you want to know what autistic people have to say about the various interventions, read what they have to say. Please, don't take my word for it."


Trust me I won't take your word or anyone elses for that matter since I do have the ability to think for myself.

sashasmom
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Postby sashasmom » Mon May 29, 2006 4:06 pm

GMAC you said:

What kind of a message are you sending to your child with all of your creams, injections, HBOTs, supplements, etc? That they are just fine the way they are? No, you won't be happy until they are label-free, NT and just like all the other kids. Which will probably never happen.

and (talking about mom_os_an_autie)
Which is exactly why I told her NOT to assume everyone on this board who does not follow the same path as her condems her for doing so.


These type quotes (in my opinion of course) contradict each other. It seems as if you're condeming ones choice for biomed yet saying to mom_of_an_autie to not assume that b/c people do not use her treatment path that they condem her for her way of treatment.




Also if your theory that the kids with gut issues, metal issues, viral and auto immune issues do not have autism but something that mimics autism then we have a huge problem with the people who disgnose the kids and a huge problem with the pharma companies who purpously put metals into vaccines. No matter how large or small the amount of metals put into a vaccine it's still too much for a child who can not tolerate it. There is no way to sort through the kids who can detox and the kids who can't.

Who's to say that these issues are not causing a form of autism that is on a different part of the spectrum than the kids who do not respond. I thought that was why it's a spectrum. Maybe they should add Mercury and heavy metal toxic children with autism to the spectrum. Maybe they should add viral overload children with autism as their own spectrum.

The fact is that neither you nor I nor anyone else knows what is going on in all of these kids. Thousands of kids with "autism" are becoming more functional with chelation b/c of a heavy metal issue. That doesn't mean they do not have autism. If all people with autism were the same and were only helped with the same interventions then it wouldn't be a spectrum. There is controversy over the "new" autism label of PDD. Some say PDD is a diagnosis in itself. Our Psychologist as well as the other 2 who diagnosed sasha with "autism" say that PDD is part of the spectrum. Does that mean they do or do not have a form of autism? Again most everything I say, you say, we all say is our opinions regarding how our children responded.

As for your first quote above..... I know that was not directly toward me but I am assuming it's to biomed parents of all kind. What kind of message are we sending our children if we do not treat the sickness which causes them to be delayed in certain fields? what is so wrong with "our creams" if the kids have medical labs that prove they need "the creams". What kind of message are you sending to a 5 year old with Lukemia when she has to get chemotherapy? Would you say that she's just fine the way she is and doesn't need it? Or would you try to better her life to it's fullest?

I pray for a lost diagnosis b/c I know that my child was not born this way, there is no genetic link, and it was not his fault that he became like he use to be. As for doubting kids can lose their diagnosis keep doubting all you want but according to Sasha's DAN! he believes that Sasha's diagnosis is LONG GONE. We have not asked for a reevaluation b/c he still needs speech however I'm sure that his new diagnosis will be speech delay. But according to his doctor his "autism" diagnosis is gone. It's not official on paper but I'm not in a hurry to get that done.

-Crystal

livsparents
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Postby livsparents » Mon May 29, 2006 4:33 pm

Another testimonial or a kid that wasn't on the spectrum to begin with or something that can't be proven scientifically. You child is now just one of those 'abused' auties crying to get out, your child is now an automaton. Sorry to deliver the bad news, Crystal

Tell me GTMAC, what do a 20 something autistic person telling of the horrors of going through a discreet trial ABA program with negative reinforcers at 10 or 12 have to do with a 3 or 4 year old going through a Verbal Behavior or Floortime program? I'm still trying to figure out where you draw that line or how providing a 'short shot' every third day or giving them vitamins all to help them concentrate could be construed as devaluing them? I DO value here opinion, but right now it's whether she wants a bath or whether she wants chicken nuggets or eggs or wants to go outside or read a book. I fail to see the relevance to my 3 year old on what an adult autistic person has to say about ADULT autism issues?
Bill


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