Sunday, March 25, 2007

Larry King Live tonight, 9:oopm edt

Larry King Live is re-airing the Autism episode from last week. Please tune in! Toni Braxton speaks about how difficult it has been to learn her young son has autism. Bill Cosby speaks out and offers his services at a concert with proceeds going to the BIOMEDICAL causes of autism, not pure "genetics" like the VAST majority (95%) of studies currently run through the major autism group. Suzanne Wright shows her intense passion for this topic as only a Grandmom can. Michele Illionardi (who I am proud to call friend) give us a glimpse into parenting 3 gorgeous boys with autism. Gary Cole (Mike Brady!) tells us about his 14 year old daughter with autism.

If you missed it, do tune in.

30 comments:

Laura said...

Oh, cool! I only saw the last few minutes when it was on the other night. Off to set up the Tivo...

Michelle O'Neil said...

Kim, thank you so much! I was so sorry to miss this the first time. We'll be sure to tune in and I will post something on my blog about it as well.

You're the greatest!

Margaret Romao Toigo said...

I watched the March 21, 2007 edition of Larry King Live, "The Mystery of Autism," with great interest because two of my four children are autistic.

However, I was disappointed that the only point of view represented was that of "Autism Speaks," an organization that many autistics and families of autistics have vehemently denounced because we reject their notion of autism as a "disease" that needs to be "cured."

It is shocking to me that an hour-long program about autism did not include any representatives from the Autism Rights Movement because Autism Speaks does not speak for me or my children!

You see, we are very offended by the assertions of Autism Speaks and similar organizations, who bemoan the "tragedy" of autism, instead of celebrating the beauty of neurodiversity.

Autism is not a disease, it is a variation of the human condition.

Autistics need society's understanding, tolerance, and accomodation, not sometimes painful, always expensive "cures" that are intended to make them into "normal" people.

Autism Speaks, which has no autistics on its board or in its employ, promotes of a sort of intolerance toward autistics that is very damaging to the selfsame people they presume need their "help."

I don't want my autistic children made normal, I love and accept them as they are. I never mourned for some "normal" child that never existed. I was not devastated by the diagnosis of autism, I was relieved, for then I knew how to proceed.

Both of my autistic children (ages 8 and 4) have made great progress, mostly on their own, without medications, draconian "treatments" (such as chelation), special diets, or expensive private thearapy.

What my autistic children need, in addition to society's acceptance and accomodation, are educational programs that encourage their unique and individual abilities while teaching them the basics of self-care in ways that they can understand.

We definetly do not want to have anyhting whatsoever to do with Autism Speaks or any other "curebies."

Kim Stagliano said...

Margaret, thanks for sharing your opinion and using your name. I respect that. We can agree to disagree - I think many of the medically related conditions associated with autism are indeed treatable - I think kids can "drop" their diagnosis, but I don't know if that means "cure" or not. Again, I'm glad you dropped in and enjoy chatting with all sides our community.

Yours,

KS

Ashley loves Leo said...

If only factions could put our differences aside and accept all parents, no matter what path they choose.

I think all of us want our children to get the support they need. What unites us all is the love we feel for our children.

As Kristina Chew puts it, Autismland is different for everyone.

Margaret Romao Toigo said...

Kim Stagliano writes, "...I think many of the medically related conditions associated with autism are indeed treatable..."

Indeed, some autistics suffer from digestive problems, allergies, and other comorbid conditions (my children do not, thank God).

However, there is a vast difference between treating such physical ailments (which are also well-known to affect a number of neurotypical children) with modified diet and/or medication, and "treating" or attempting to "cure" autism itself with biomedical intervention.

I have never heard of an autistic "dropping" his or her diagnosis unless the original diagnosis was incorrect (there are neurological and psychiatric conditions whose manifestations are similar to the signs of autism) -- although I do know of a few autistics who have learned how to effectively "hide" their autism while in the company of neurotypicals.

Ashley loves Leo writes, "If only factions could put our differences aside and accept all parents, no matter what path they choose."

Well, of course, "why can't we all just get along?"

I believe that it is easier for those who take the interventionist (or "curebie," as the adult autistics I know call it) route to accept those of us who choose not to than it is vise versa.

You see, in the autism business, there are a lot of "quacks," and it is difficult to sit by and watch people who are in the same situation as me get scammed by unscrupulous individuals who have gotten quite rich preying upon desperate parents in mourning for some "normal" child that never existed and selling them very expensive "cures" for autism.

But wait, there's more! In addtion to the scams that affect parents' bank accounts, some of these so-called "treatments" (chelation, electric shock, and hyperbaric oxygen therapy, just to name a few horrors) are very painful for the children to endure.

What is also very painful to autistics -- children and adults alike -- is the notion that they are diseased and/or defective and in need of a "cure" to make them "normal" as if that is the only acceptable way of relating and being.

Just because some autistics do not talk, or otherwise demonstrate such in an outward fashion, does not mean that they do not hear and think and feel.

Read some of the writings of adult autistics and try to see things from their point of view.

When I read their writings -- and watch their videos on YouTube -- I not only feel sympathy for them because of how society at large views and treats them as defective rather than just different, I also feel hope for my children, for these are the people they are likely to someday become.

Of course all of us want our children to get the support they need, we just differ on what that support should be.

Kim Stagliano said...

As I said, Margaret, we can agree to disagree and remain cordial. When my 6 year old had two shattered bones in her arm and no ability to tell me, I must assume she would have preferred to have speech, if only to say "Mommy, while am quite proud of my autism label, it would appear that my radius and ulna have been snapped into pieces. As such, I am in tremendous pain and wish that you would read my mind and then escort me to appropriate medical care immediately." - regardless of what the outside world thinks of her intelligence.

Capece, Margaret?

Karen said...

We watched the Larry King Special while in the Pediatric ED last night. My daugher had a head injury, requiring a trip to the hospital, CT scans and thousands of dollars all b/c she was unable to tell us why she kept screaming for 2 hours....is it her head or her ribs, back? Does she have gas or is she scared or is she really hurt? She can't tell us that. She has no speech other than 2-3 words she echos a day. She is basically non-verbal, despite 2 hours of ST a week, 1 hour of OT and 30 hours of pre-K autism program at the public school with other children dx with severe autism. No, I haven't tried Chelation and I am a RN and I would have to really research it and trust the MD but I am willing to try other therapies to help her. I love her with all my heart but I would do anything if she could would call me mama again and also tell me when and where she hurts.

Kim Stagliano said...

Karen, I'm sorry you had to go to the ER. That's what biomedical interventions are all about = bringing out that which is trapped inside our kids = not "changing them." As a nurse you know that the docs are not God = I'm sure you make good decisions for your daughter using your mother's heart and your nurse's brain. Good lord - if a child had CP would a parent leave him lying on the floor in a heap or get a wheelchair? Would allowing him to roll from point A to point B even though God did not create him to be able to do that be "harming" him? I simply can not wrap my head around the "to intervene is to harm" mentality. And I try. I really do.

Kisses to you daughter.

K

Anonymous said...

Margaret,

As a mom of twin boys with autism I have a vastly different view on what it means to help my children than you do. Not to disparrage your view. Just to shed light on mine. See, I do believe that they were not born this way. I actually know they weren't. They were developing beautifully and on target until they received multi vaccinations at a year and then 15 months. It was blatent and their Pediatrician even has a hard time reading back their notes. Their Developmental Pediatrician and Neuro Psych also admits that while not in all cases, they know of many children who have LOST their diagnosis due to biomedical intervention. A very good friend of our main stream Dev. Pedi wrote a wonderful book called The Autism Source Book. Maybe you have heard of it? It was written by Karen Ekorn Skiff. Her son recovered with biomedical intervention as well as ABA, speech, OT and the like. There is a wonderful boy I know named Daniel. Daniel was moderately autistic at 18 months. Daniel is now in the 2nd grade, no diagnosis, plays soccer, boy scouts and is at the top of his class acedemically. He is fully recovered with the aggressive biomedical approach IVIG with a well known (and mainstream, might I add) physician out of U Cal named Dr. Gupta. These are only two of the hundreds of examples I could give - and these are purely examples of HOPE. I am not one to judge you for your path. Nor should you judge for any other path a Mom wants to take. I write in Kim's blog today (and god knows she knows how I feel about blogs!!) because I think it is important to give parents HOPE. For me, chelation, Tomatis, ABA, speech, Cranio sacral, HBOT, OT, enzymes, probiotics, vitamins and supplements have GIVEN my children back to me. Somedays slowly, other days light speed but after a year and a half of going at it, my kids are rocking. Today my NON Verbal son yelled at the Pediatrician after a throat culture (for Strep) "I WANT MY DADDY"!! We cheered!

I believe our kids are sick. They weren't meant to be sick. If your kids were diagnosed with Diabetes would you change their diet and give them insulin? Of course you would. If they had Cancer would you treat them with chemotherapy or radiation? Sure, if it meant that they had a chance. My point is, please don't disparrage parents who are working their asses off to recover their kids. Its a choice with some amazing outcomes. I happened to know personally 5 amazing recovered kids - and with all of them biomedical intervention and intense therapies were the reason. I hope I can be part of their club someday soon.

Anonymous said...

Karen,if your son had lead poisoning you'd chelate with EDTA, right? Same thing. You can do it. You can.

Karen said...

Yep! I think it works and I'm totally open to it. I just have to research it a little more and shoot, maybe try it myself first. :-) I am open and willing to new alternative therapies. Most general Pediatricians have no help for autistics (I dislike that word), for "our children with a diagnosis of autism", to me sounds better.

The GFCFSF diet (in addition to supplements) has really helped with her stimming and also with her twirling circles for hours. We are eating less processed food than ever and I think that is good for my husband and I too. I haven't worked up to the juicing spinach and greens yet, I'm gonna try that really soon myself. I am willing to try alternative therapies, I just have to research them and also try them myself first. :-)

Peace to everyone.

Ashley loves Leo said...

Man! There are so many paths here just on this post. So many have worked for some, and not for others. Making blanket statements about one therapy, approach, or another is dangerous.

Case in point: some kid have had negative impact by chelation, while others have seen gigantic success. Just like dating. One gal's nightmare is the next gal's prince in shining armour.

If this disorder were only that simple, to poo poo certain things, while other approaches are deemed worthy.

Fortunately for us, my son responded to therapeutic and biomedical interventions. Today I'm happy to report he's STILL autistic, but no longer DISABLED by it. I wouldn't change his differences for the world!

More importantly, he's happy. All a mom could hope for.

I'm raising my glass to any mom or grandparent willing to take a stand on any topic regarding Autism! Even if it's just one area. Who cares, it's national T.V.!

And I'm raising my glass to Karen! Hope your little one gets well soon.

Margaret Romao Toigo said...

I think we can all agree that one of the things that makes America great is that we all have an equal right to our divergent opinions, and that raising autistic children presents many unique challenges that parents of neurotypical children could never imagine or truly understand.

I have been through the screaming fits, too, not knowing whether it was due to a serious injury or simple overstimulation -- should I just let him or her lay there screaming to get it out of their systems or should I call 911? But you do eventually figure it out and proceed accordingly.

When my son was 3, he let me know he was thirsty by throwing his sippy cup at my head (I eventually learned to duck). Now, that he is 8.5, he asks me, "Mom, can you need juice?" I'm so glad that he can talk, that I don't care if his grammar is a bit strange.

I think I know where you're all coming from in the communication area. I can even understand why several of the autism cure charities use puzzle pieces in their logos. Autistics can be very hard to figure out for us neurotypical folks.

Now, just when I am begining to understand my son, I now have to interpret my 4 year-old daughter, who speaks as well as my 8.5 year-old son does now (perhaps she learned from him?), but has tantrums that are far more intense and difficult to calm than her brother's ever were.

And don't get me started on that whole running right out the front door and down the street thing -- let's just say that I am grateful that they're both very afraid of the dark.

When my son was officially diagnosed at the age of 4 -- I had had my suspicions since he was about 2.5, but I wanted to wait and see because some kids just develop out of the order of those neat little milestone charts -- the developmental pediatrition told me there was no cure, but that with special education and some assistance, he could learn to get along in the world.

I just accepted that as I was used to his quirks by then. I signed him up for school and hoped for the best.

I heard about the vaccine controversey, and all the mercury poisoning treatments, a relative once gave me two cents worth of free advice on chelation, but when I looked into it it seemed a rather shady practice with some people actually discussing how one must find the "right" doctor who would prescribe certain drugs against their FDA guidelines.

Besides, there are physical symptoms that go along with mercury poisoning and neither of my children present any of them.

I can understand why parents of autistic children who have digestive and other medical problems, and who were vaccinated before 2000, would believe that mercury in vaccines was the cause.

But they took the mercury out of the vaccines in 2000, and my autistic daughter was born in 2002. And the 1 in 166 "autism epidemic" is still there, increasing by some estimations.

We are lucky to live in a school district that has a pretty good exceptional education center (I do understand that others may not be so fortunate and that is very wrong IMNSHO on another topic), the kids get speech and occupational thearapy, as well as instruction in reading, writing, arithmetic, and so on.

I really just know what has worked thus far for my family, but autistic-land is different for everyone, to paraphrase an earlier comment.

Please do beware of the quacks who promise to miraculously -- and expensively -- "cure" a condition for which the vast majority of modern science believes none exists.

Charlatans take advantage of people desperate for hope for a wide array of incurable, irreversible, and sometimes terminal conditions and diseases.

These people don't care whether your child is autistic, or if he or she has cancer, AIDS, diabetes, etc, they just want your money.

Reputable private thearapists, dieticians, and even pharmecueticals in some cases, are one thing, but "miracle cures" are quite another.

Even Autism Speaks does not support such con artists. Steering folks away from the quacks is, after all, one of the public services they have promised to perform.

Anonymous said...

Kim....we love the interesting and informative posts that you always have! Thanks for all of the information that you put out there!

Anonymous said...

Margaret,

I read your posts and just wanted to comment regarding having a child with autism. Our son, who was developing normally until about 13 months, was diagnosed with autism, PPD-NOS, severe developmental delays when he was 2.5 years old.

If you had a child who would stand directly in an ant bed and see "dirt" and not move until you physically picked him up and moved him, would you want to help your child then?

I'm not sure how you get that having a miswired brain or neurological difficulities is interesting or makes your child unique.

Do you think being constantly ridiculed by other people is going to somehow make your kids happy, interesting, engaging people? I don't think so.

I came from a family with totally "interesting" people, ie: father gay & alcoholic, sister gay, aunt schizophrenic, sister bi-polar.

They were all "very interesting" people. But I personally myself could have done without so much "personality" in my immediate family.

I knew at a very early age not to have friends because I UNDERSTOOD what the ridiculing from other people would do. I knew not to have friends when I was in first grade. I, myself, am "normal" but just being in that environment all the time turned me into a loner.

Everyone is unique in their own way but to have the "choice" to be normal, is the point that you're missing.

loveconquersall said...

Margaret,

I applaude your convictions and your willingness to discuss your views in a diplomatic manner. It is apparant that you love your kids and see them for the wonderful beings they are. That is fantastic!

This is something that we have in common. I have but one child. He is almost 4 years old and he is my life...beginning and end. I cherish everything about him. I do not want to change his character. His diverse personality. His spirit. All those things I hold near and dear to my heart. I think you understand how I feel?

What I think muddies the water and divides the current between "neuodiverse" mothers and "biomed" mothers is a strange thinking. It is caustic and very non productive. It is the theory (that many neurodiverse parents use) that by using vitamins and supplements (and perhaps special diets prescribed by pediatrics BECAUSE allergy tests prove children's inability to digest foods) is HARMFUL to the child. You see...all BioMed mothers do not chelate their children or HBOT their children. you might want to tell your friends that one.

By LUMPING us all into one category what you are doing is #1 Showing your true ignorance #2 Showing your fear for change #3 Building an adversarial mentality (which I think Big Pharma should be sending you a BIG CHECK for. Services Rendered: for distracting the public and instilling fear. Kind of like this administration...Hmm Makes me wonder where your loyalities lie?

There is something I must confess to you. Biomedical parents are undeterred by illogical rantings. Or by fear based aurguemtns. It truly is a waste of our time.

You see Margaret....we are a special breed. We are the ones that actually have YOUR back. We question people that hold the highests posts in the country. WE are the ones that question MD's and their medical practices. We question politicians and their willingness to protect the environment, that our children have to survive in. Our relatives actually changed special education for everyone (Yes I said relatives. I believe I am the offspring of Doers not Complainers)

Just some information for you Margaret. Before founding father of DAN!, Dr Rimland, medical journals stated that autism was the creation of "bad mothers". Thank you Dr Rimland for changing that way of thinking...one less thing for me to do.

Amazing....at the end of the day we still come home and love our children. Hope for a wonderful life. Go to church...And cheer other parents on. We are a special...and we are growing. Thank God!

Lovemeansaction said...

Love, you're right. And didn't Bernie Rimland found The Autism Society of America?

Allison said...

great post loveconquersall.

Margaret,
What do you think about children who regress into Autism? Do you think it's a misdiagnosis? Just curious because I know the reason I am so driven to treat what "ails" my son physically is because of his regression. His skills and physical picture went down hand in hand. I believe my son's case was more visable to Autism's whole body issues. But once involved in some of the testing and treatments, some parents who have had children affected noticably since birth start to realize the physical aspects much more. I'm not just talking chelation but the entire picture. We do extensive testing on each child to tailor treatments. What is snake oil about that? When you have the results in your hand you make the decisions on where to proceed along with your Dr. DAN drs never say "I can cure your child". They say "I can try and help make them feel better by using testing and treating procedures". DAN drs are among the few Dr.s that actually listen to all of the symptoms of Autism given by the parent and don't just label it behavioral. All I'm saying is don't knock it until you try it. Your children might feel better and even better might be able to express that to you.

Kim said...

Margaret -- Just to clarify something for you. You said that mercury was taken out of vaccines in 2000 -- this is a common misconception. At that time, some manufacturers began to voluntarily remove it and they never had to recall the vaccines sitting on the shelves loaded with the stuff. In fact, because they have a long shelf life, there may be mercury-containing versions of common childhood vaccines still sitting in pediatric offices around this country (and don't forget that we are shipping it worldwide now too!!!). I am not just talking flu vaccine -- I am talking about all those shots so many kids get -- and get multiples of... Because they were not recalled and have far off expiration dates, a child like yours born in 2002 had a pretty darned good chance of getting mercury tainted vaccines.

While I wish I could convince you of a connection, I at least wanted to provide you with some accurate information about mercury in childhood vaccines.

I would also add that Biomed has really helped my son and has helped improve his life globally, including his overall health. Chelation, HBOT and other therapies are not "horrors" -- I go in our HBOT and I actually feel great when I do it and I see improvement in my son -- it is not a chamber of terror!!! My son has never had an adverse reaction to chelation -- only great improvement in global functioning. You said your kids show no signs of anything that suggests they are sick -- but often times tantrumming, stimming, flight or fight reactions etc. may actually be symptomic of underlying physical illnesses or are caused by food allergies or intolerances. You seem like a very caring mother and, even if, as you say, you don't want to cure your children's autism, I can't imagine that you might not want to deal with real physical problems that can be helped and whose symptoms you seem to consider a part of "autism" that you have accepted but which may be masking very real phyical woes.

Also, I believe you are flat out wrong (sorry!) in claiming that there are no kids who were correctly Dx'd with autism who have been cured. In fact, kids who were correctly Dx'd (including being Dx'd by really top specialists) do sometimes lose their diagnosis and for many of those kids, biomed has played a key role. Loss of diagnosis cannot merely be chalked up to wrong initial diagnosis (that just fits with the idea that autism cannot be cured -- it is convenient if the only "cured" kids were never really autistic -- convenient, but not true!). In our case, even some of the very mainstream docs we see (neurologist, pediatrician etc.) are amazed by the changes in my son from biomed treatments.

You make it sound like biomed practioners are a bunch of snake oil salesmen and biomed parents are merely their unspecting pawns, standing there with open wallets, begging to be taken advantage of. Like many biomed parents I know, My husband and I are highly educated and research carefully every treatment (conventional, educational, therapeutic and biomedical) that we consider. The biomed parents that I know do not just roll over and do whatever the next doctor suggests -- they question, they research, they search out the best practitioners they can find. Biomed parents tend to be dedicated, hardworking, research driven -- they may or may not have fancy degrees and they may or may not have lots of money but they research, educate themselves, and sacrifice for their kids because they see how biomed can truly improve children's lives and, yes, in some cases, cure them.

BTW, I do love my son for who is now and if he never changed I would still love him with all my heart. But because of that tremedous love, I fight every day to make his life better, and biomed has helped me do that.

A Dad's Perspective said...

I am the proud Dad of an autistic little boy. I have read with interest (see...concern) the comments of some who would dissuade those that seek a biomed path (in additon to the OT, Speech, & ABA therapy) to recover their autistic children.

My son was once a happy vibrant bundle of life. He was not born wearing the shroud of autism it was woven by big business and the lust for 'profit at any cost' and thrust upon him by the toxic environment he lives in.

A Biomed strategy when intergrated with other standard therapies is my son's best chance to leading recovery and a full joyful life.

So my wife and I will take that long painful journey to recovery not for us, but for our son. Along the way we will encounter angels and predators, those who empathize and understand and those who are ignorant and intolerant. Every journey in life is fraught with these perils.

There is no time to waste when battling autism, our children's future depends upon it. So two sayings come to mind for me, "the truth shall set you free" and "the hour is at hand." This is what we need when dealing with autism, the truth the whole truth and the courage to act upon this truth now right now!

loveconquersall said...

Dear Dad's Perspective...

Great Post!
Your son is a lucky little boy.

Thanks for giving your point of view.

jenny said...

Margaret,
I am interested in why you think that hyperbaric treatment would be painful? Did I read your post correctly? I completed over 80 Hbot sessions with my son (his age was 2.5 to 3.5 years old). Neither of us experience any pain at all. Initally, for me, I was a little leary of HBOT, but after researching, I thought it would be worth a shot and found that it couldn't hurt him. My son also has a diagnosis of mild CP, so (in layman's terms) promoting growth thru oxygen seemed to make sense to me. Each of our children are different---and we all seem to come up with a mosaic of treatments--some parts like the treatments that others use and some not at all. I have found that my child has recovered--so much so that I find myself holding my breath and wondering, is this really true? He seems more like a "normal boy" (whatever that is) He is losing his diagnosis of autism and is moving on the spectrum. A month ago, he at separate times walked up to 4 different children and asked them to play with him. I value what I learn from all of the parents involved in this--we just piece it together as we go along, but we learn so much our shared success and pitfalls. I don't know how I would have dealt with this if I hadn't found the online support and biomedical information that I have found online and thru other parents.
Jenny W.

Margaret Romao Toigo said...

Anonymous (7:23 AM) writes, "I'm not sure how you get that having a miswired brain or neurological difficulities is interesting or makes your child unique."

May I suggest reading what autistic adults have to write about it? You will find many links to their writings at neurodiversity.com. There are also a number of autistics who post videos on YouTube.

For me, it just is what it is and I accept that. Understand that, unlike what many others on this thread have experienced, my children never regressed, they both developed erratically from babyhood.

For example, my son learned how to play pre-school level video games when he was 3.5 (all on his own after watching his older sister for an hour), but he never spoke a single English word -- he did babble on in a weird gibberish, however -- until he was 4.5 when he walked up to me one day and said, clear as a bell, "now available on video and DVD." I almost fainted!

But even before that, at about 6 months, he stared at rattles and other infant toys, he didn't shake or bang them or put them in his mouth like most babies that age.

When he was about 1, he would line up his toys in neat little rows and was fascinated with movie credits and the stock ticker crawls on the financial/business networks. He would throw a tantrum if we ever turned them off.

At 15 months, he could climb to the top of the playground slides and slide down himself, but he walked on his tiptoes and flailed his arms when he got excited (he still does that, but I now realize that this sort of "stimming" is his way of calming himself when he gets overstimulated).

Every credible scientist and every reputable practitioner I have consulted (either in person or through reading their books and articles) has told me that the cause of autism is unknown but most likely genetic, that there is no treatment other than special education combined with speech and occupational thearapy, and that there is no cure.

Perhaps some of your children are not autistic, but rather exhibit similar symptomologies to autism due to mercury or some other toxins.

If either of my autistic children had digestive problems, seizures, etc, or if their development had progressed typically and then later regressed after they were given MMR vaccines, I might be inclined to believe the same and seek treatment accordingly. But that's not how it happened with us.

Some of you may very well be onto some sort of coverup/conspiracy with regard to thimerisol, and some of you and your children may be victims whose children have been diagnosed as autistic, when they actually have mercury poisoning, whose symptoms are similar to autism.

Maybe what some of your kids have and how my kids are, are two different things?

Anonymous (7:23 AM) writes, "Everyone is unique in their own way but to have the 'choice' to be normal, is the point that you're missing."

Adult autistics almost invariably choose to be who they are and reject the notion of "normal." Some of them even look down upon us neurotypicals, as if it is we who are disordered.

My children are autistic and have no choice to be "normal" (whatever that means). Perhaps other children have mercury poisoning and are helped by treatments for than condition.


loveconquersall, I certianly do understand that there are vast differences between vitamins and chelation, between private OT/ST and electric shocks, and between drug treatments for medical disorders (like digestion problems or seizures) and biomedical treatments, such as chelation, for autism itself.

I am not an advocate for the pharmaceutical industry (I believe they help to perpetuate the war on drugs), nor am I a fan of our current administration.

Although I am not a fan of Autims Speaks, either, I do appreciate how they are seeking the cause and a cure, and how they do not make any claims of having discovered them already.

Whether autism is ultimately discovered to be the result of mercury poisoning or genetics or something else entirely, I am also very grateful to those who have helped to dispell that old myth about how autism is caused by "bad parenting."

Indeed, that is one less thing to have to deal with.

Allison asks, "What do you think about children who regress into Autism? Do you think it's a misdiagnosis?"

I'm no expert, but I do think there may be something to that theory.

Neither of my children regresseed. Each of their developments were pretty consistently inconsistent from infancy.

I did not experience the sort of events -- MMR vaccinations followed by regression in development that had been previously typical -- that would, quite understandably, lead some people to the conclusions a number of you have drawn.

Allison writes, "All I'm saying is don't knock it until you try it. Your children might feel better and even better might be able to express that to you."

Their tantrums can be worrisome and I am afraid they might hurt themselves or someone else, but we know what brings them on and try avoid those situations.

My children are happy and healthy most of the time, even if they do behave strangely. The passive approach has worked for them, but it, of course, does not work for everyone.

Kim writes, "...but often times tantrumming, stimming, flight or fight reactions etc. may actually be symptomic of underlying physical illnesses or are caused by food allergies or intolerance"

Indeed, you may be correct in some cases. Every autistic child is different, which is why they are often so confusing to treat.

However, since non-medical techniques, such as avoiding tantrum triggers and known provocations (which seem situational rather than food-related according to my years of observation), letting them "scream it out" with supervision so they do not hurt themselves or others, and heaping praise upon them for demonstrating restraint have worked for us, I do not think this is true in our case.

Kim writes, "You make it sound like biomed practioners are a bunch of snake oil salesmen and biomed parents are merely their unspecting pawns."

A number of them -- but certainly not all -- are selling snake oil and preying upon parents' desperation for hope.

I never judge parents who want to do everything they possibly can for their children, but I do judge quacks and crooks.

Most of the people here impress me as being well-educated and quite capable of researching, questioning and making their own decisions, so am I.

It's just that my education, research and questioning have lead me to different conclusions about biomedical treatments for autism such as chelation, HBOT, ABA, and the others that have not been not sanctioned by credible scientists and/or reputable practitioners.

But please remember, I never saw any regression in either of my children. They did not start out "normal" and then become autistic, which seems to be what a number of you are describing here.

A Dad's Perspective wites, "... I have read with interest (see...concern) the comments of some who would dissuade those that seek a biomed path..."

Are you referring to me? Please don't be too concerned, I have not convinced anyone here, even if I have managed to do so elsewhere in the past when I found people who have gotten past the anger and bargaining phases and are transitioning into depression phase because that state of mind is most open to move onto acceptance.

However, now that I am beginning to see a difference between the reactions of parents whose kids regressed after having exhibited typical development patterns as compared to those of children whose development was atypical from infancy, I will have to re-think and alter my notions about those who have good reason to suspect that some environmental factor may have caused their childrens' autism, or autism-like, symptoms.

Kim Stagliano said...

Thank you, Margaret. I think this has been a really good thread.

Anonymous said...

Margaret,
With you thought provoking and lengthy logs one would get the impression that you have a lot of time on your hands.

Why don't you try to do some good with it? Like making the world a better place for YOUR children (and God forbid maybe mine)

I am sure there are many calls to make...Like checking the drinking water in your community? Calling your local government agency to make sure there are laws enacted to preserve natural habitats. How about firmer restrictions on vehicle emissions. I am sure special education is not perfect in your community. The list is endless...

We/parents see autistic children everyday. We read the newspapers everyday. We log onto Youtube. WE read stories from other autistic individuals.
The difference is we hear and DO. You hear and COMPLAIN. How productive is that?

If you care so much about autistic people....why aren't you helping them by protecting them?

Honestly....your short sighted ignorance boarders on stupidity.

Margaret Romao Toigo said...

And, thank you, Kim. I have learned a lot from this thread and it is alwawys interesting to read other points of view.

Anonymous (9:39AM), I have plenty of time on my hands because I have accepted that my childen are autistic, that the cause is very likely genetic, and that there is no cure.

That is what every credible expert says, whether some families of autistics believe them or not.

Victims of mercury or some other form of poisoning may have a chance with some of those alternative "autism treatments," but if they do, then they were likely misdiagnosed as autistic when they are actually suffering the effects of some environmental toxin.

My childen are autistic. They didn't regress, they were born that way. They were not poisoned.

Even if children who have mercury poisoning exhibit autism-like symptoms, autism is not mercury poisoning.

It is my intention to help autistics and their families by warning them about unscrupulous individuals who sell false hope, to raise awareness about how autistics feel regardng the way society (and sometimes even their own families) treats them as defective and/or diseased, and to make the world a better place by promoting neurodiversity.

Who's complaining here? I'm not as it will not change my autistic children's diagnoses or prognoses. Nothing will.

Special education and ST/OT are helping them to learn restraint and how to better navigate the neurotypical world, but they will always be autistic.

Now, I may be misunderstanding some of the comments from other folks on this thread, but I haven't noticed any of them complaining, either. They just want to get to the bottom of what is making their children sick so they can help them.

Some of you good people may very well have children who are victims of some sort of environmental toxin. But that is not the same thing as autism, even if the symptomology is somewhat similar.

The accounts of children regressing after a pattern of typical development are indeed cause for concern, which is why I believe that those children may have a different condition than mine, who exhibit no signs of having been poisoned.

Accepting that my childen are autistic sets me free because there is very little I can do for them ouside of what they're getting right now from exceptional education and ST/OT.

Those of you whose children have been poisoned by vaccines and/or other toxins have a reason to fight the good fight against that affliction and its possible causes.

I wish you all the best in that endeavor, but I believe it is an issue that is separate from autism.

Anonymous said...

Geez Margaret....

What do you have against people trying to make the world a better place for children? (are you a dog kicker too?)

Stop harrassing people that are trying to make a difference...Just sit back and reap the benefits.

Anonymous said...

Margaret,

You sound like a really intelligent lady who likes to be informed. There's a really thought-provoking article on autism in Discover magazine. http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head
Would you read it and post some comments on what you think about this article?

Kim Stagliano said...

Margaret, if you do post about the Discover article, please do so on your blog - people can pop over there to read your thoughts. I'm not chasing you out - but this thread has done its thing. Thanks. Kim