Susan's Blog

Wednesday, March 1, 2006

The Autism Club

I have a column at a local paper. I wrote this article for last week’s paper, and a fellow blogger took offense. My lede had been the story about Abubakar, the 5-year-old Maryland boy whom it is believed died of errors ascribed to his chelation treatment for autism. As I’ve said before, there is a deep and severe division between autism parents as to whether autism is an illness from which one can recover, or whether it is a different neurological wiring to which one can adapt. Several friends on both sides of the chasm jumped to my defense, which made me feel really good, but I did wonder if I was wrong to come out so firmly on the side that questions recovery. I have been trying to straddle the gap, because that is who I am: a Libra who always tries to see all sides of an issue. I want to be fair. But I really do believe that there are kids out there who present with symptoms that look like features of autism but which are actually something else, and so the biomedical interventions might in those cases have an effect.

The primary issue, to me, is not whether to treat, although I know that this is the issue for many. The issue for me is that when some kids’ issues improve and others’ do not, the parents feel like they have failed. That is the piece that moves me. A good friend of mine who tried many, many things to little avail has confided in me that people have sneered at her that she has not done enough, or has not done it right, or he would be “better” by now. This is the problem with the debate.

It is my belief that we have to acknowledge that there are some forms of autism that look a certain way and act a certain way, while other forms do not. Or possibly, there are ways of being that look like autism and are not. There are also people who believe that their children are perfect exactly as is, “warts” and all, and who steer clear of non-traditional, even potentially harmful treatments. Others think they are crazy not to try every, single thing out there, devoting ones life to treatment (as one well-known autism-fighter puts it, “No finer cause on the planet.”)

I believe that an even better cause for the planet would be teaching tolerance for difference, whether it means tolerance for a different opinion from your own, or tolerance for the full spectrum of people we come across. Tolerance/inclusion is not about hitting people over the head with your viewpoint, but by providing gentle example. At any rate, if we’re all doing the best we can, which I assume we all are, that should be the bottom line. Autism should not be the club we use against each other.


Well said Susan. You are kinder than I am. This is a club I never asked for membership in, but I have met some really wonderful members along our journey. I will say that I get frustrated when others tell me I am not doing enough (have you seen a gastro doc- for what, my son’s non existent gut issues). Like I should be “curing” him, and since we aren’t on that path, I am doing something wrong.

I have done some more reading on the case your article referenced, your take seems fair given what was reported. People trying to help their kids have their hearts in the right place, but their desparation sometimes clouds their thinking (ie: doing chelation without a real doctor).

Take care,
Andrew’s mom (PDD and 6.5)

— added by Laurel on Wednesday, March 1, 2006 at 7:07 am

You’re kinder than me too ;o)

There are wider points to poor Tariq’s death than just the ‘he was given the wrong thing’ position the other blogger adopted but I don’t want to clog up your blog rehashing that suffice it to say its human nature to want to defend something one is heavily emotionaly (and financially) invested in. Thats true for everyone in the club.

— added by Kev on Wednesday, March 1, 2006 at 8:09 am

Wow! You not only helped me make peace with Autism, but also with my own thinking. I have long felt that there are some things out there that may present as “autistic behavior”. We go to speech/OT at a hospital here in Minneapolis 2 days a week. There is a group of mom’s there that have become the “club”. They have all the expertise. If you fail at it, you feel like a failure. We did the gluten/casing diets, B-complex, therapy. We haven’t seen earth shattering changes for our Sam. The “club” at our therapy is almost “anti-medical” completely. I struggle with some of the biomed stuff. I have felt like we have failed at times. But…part of me has always felt that perhaps these families who try the diets and such and see miracle changes, or the cod liver oil eliminating all symptoms, then perhaps in my heart I have wondered if there was a chemical issue with that child, not autism. Can you tell we go to the “club” today.

In 2 weeks we meet with our pediatrician. Our trust our medical community. He really wants me to consider some ADHD meds for our son. He is so overstimulated all the time, that it is frequently even a safety issue just walking in a parking lot. We have tried everything, every sensory strategy form our OT, etc…I will feel like a failure if we go on meds if the “club” ever found out. But…I can’t keep going with Sam and have him miss out on learning and life opportunities. Just reading your blog today 1- helped me to realize that I am not crazy when I feel like there is this whole debate even in our autism community, 2- that there is someone out there who thinks like I do , and I may not be way off base in our situation, and 3- that I need to do what is best for Sam and our family, and not fear the perception of those in what is supposed to be our supportive Autism community here. THANK YOU!!!

— added by Laura Cottington on Wednesday, March 1, 2006 at 10:52 am

I have a Sam too, Sam I am, and agree with you on all counts. I feel like I am not measuring up b/c we do not do the diet, the vitamins, etc. but I know that it would probably be the last straw for me in any attempts I make at normalcy for my family. The special grocery shopping, special recipes, no more of our family going out to Chilis for salsa and chips, and other gluten/casen packed foods,etc. would be just one more in a long line of things that have made me feel so isolated in this journey. My Sam has never had any signs of gut issues; he poops regularly and solidly, excuse the details! Anyway, I think we all have to make a personal peace in our own minds as to what measures we will take to help our children. And really , who are we to decide what they are supposed to be? I would not dream of trying to make my other son more athletic, or less goofy, so why should I presume to believe that I know who Sam should be?? Thanks for the interesting posting, Susan. I always know your heart is in the right place, very evident in your wonderful book. Laura

— added by Sam's mom on Wednesday, March 1, 2006 at 11:29 am


I’m struggling with this whole bio-medical thing at the present time. I’ve even posted about it recently on my blog. Does mercury cause autism in some cases? I don’t know. I don’t think anyone can prove either way. I do believe that it will be a long time before this disorder is figured out. They have been researching ADHD for decades and they still don’t understand what causes it. My son is enrolled in an NIH study on the effects of fluoxetine in early development. As the principle investigator said after his baseline assessment, your son is “robustly autistic”. That was three months ago. Now the researchers are giddy as they see his progress and have recently said that he is one of the higher functioning children they have seen. Even his local pediatrician commented on the change, even though he doesn’t know about the study. Was my child always higher functioning? I don’t think so. He raddled the University doctors in the beginning and they work with autistic children routinely in the practice. My child has even unnerved very experienced Lovass therapists.

The NIH study is double blind controlled but it is obvious to everyone that my son is on the medication because the changes have been remarkable. My son doesn’t know it yet, but he may be paving the way for many future children on the spectrum. I’m even beginning to think he will be mainstreamed in general education.

I think when all is said and done, science will discover that there are several etiologies of this disorder.

— added by not my blg on Wednesday, March 1, 2006 at 8:09 pm

Uh oh, you just stepped on the proverbial landmine. As someone said earlier, they never asked for a membership card to this club. We all just try to do the best for our kids with the conflicting information that we have available to us. I do think that there are people out there that take advantage of our desperation and desire to help our kids at any cost. And that’s where we as parents have to be very shrewd and discerning about what we do and don’t for and to our kids. We are have stewardship of their bodies, not ownership. At least that’s how I like to think of it for my daughter. Keep speaking up for the balanced approach ! Thanks for speaking out. Sara

— added by scarymommy on Wednesday, March 1, 2006 at 10:59 pm

Hi. I just finished the book, Making Peace With Autism. Since my 11 year old son’s diagnosis 3 years ago, I read everything I can get my hands on regarding autism. Anyway, it is in my opinion that mercury causes mercury poisoning, and that is what the chelation is for. I do believe my son is mercury poisoned, but I won’t go through the steps to have him chelated. One because he has metal fillings in his teeth, and 2 because it would be extremely expensive and who knows if it would actually work or cause more harm. I haven’t read the article yet, so please forgive me for not knowing the details.

Thanks for an awesome book that actually gives me hope. Every other book I read, the parents have unlimited resources and at the end of the book, they “cure” their autistic children. Those kinds of books depress me because I don’t have unlimited resources, and my son will still be autistic.

— added by Anonymous on Thursday, March 2, 2006 at 12:45 pm

I do believe my son is mercury poisoned, but I won’t go through the steps to have him chelated.

How do you know he is mercury poisoned?

And second, why in the world would you not attempt chelation if he is?

— added by Joseph on Thursday, March 2, 2006 at 1:14 pm

Does mercury cause autism in some cases? I don’t know. I don’t think anyone can prove either way.

It will be pretty clear a few years from now that it isn’t.

I do believe that it will be a long time before this disorder is figured out. They have been researching ADHD for decades and they still don’t understand what causes it.

That’s because it’s difficult to come up with a single etiology for a social construct such as ADHD. There are probably accidental causes that explain why some kids ended up with the diagnosis. In other cases, certain genes might increase the odds of a diagnosis. But it’s not at all clear that we can say this is an objective ‘disorder’ with a pathological cause, particularly since the symptoms of conditions such ADHD and autism blend seemlessly into behaviors of the general population.

— added by Joseph on Thursday, March 2, 2006 at 1:21 pm

Tolerance! Let’s remember the underlying message of my post!

— added by Susan Senator on Thursday, March 2, 2006 at 1:40 pm

All ADD is caused by mercury and is easily fixed with chelation. Most autism is mercury poisoning and 75% of kids improve with chelation. Over 90% of kids improve with methyl B-12. The MMR may account for the kids who aren’t cured by chelation. They may be affected by two sources.

— added by Fore Sam on Friday, March 3, 2006 at 8:10 pm

I like the fact that you stress on the tolerance part of this topic. Autism and it’s treatments are so broad and undefinite that each family has to randomly pick a treatment and hope it helps. If it doesn’t, you just keep searching and try the next method. Some work for some and doesn’t for others. I like how you keep reminding the reader of how one autistic child can be totally different from the next. I’ve got identical twin boys both on the spectrum. When you look at the list of symptoms, you could probably draw a line down the middle and those are the symptoms my boys show. They are totally opposite and so are their strengths and weaknesses. Because there isn’t a doctor who will say “Do this and they will be cured” I have to decide what I feel will work. I have steered clear of chelation because the idea of it scares me. We have been doing therapy based on the SCERTS model, and we are really making progress. Thank you for presenting this information in a way that we can take it in and judge for ourselves.

— added by AngelsWithAutism on Tuesday, March 7, 2006 at 4:28 pm

Fore Sam, you quote a lot of statistics but seem to have very little idea about how to back them up. The FDA, CDC, almost every respectable medical organization or professional and countless other credible sources have discredited the mercury myth a thousand times in relation to autism. Two sibling unqualified pseudo-scientists working from home hardly qualify as a worthy rebuttal, except to someone positively bent on seeing a priorly determined conclusion. And now you’re adding ADD to this too?

You remind me of that old character in the movie Dr. Strangelove, who ranted at length about how fluoridization caused Communism. Keep on protecting those precious bodily fluids, citizen! 😉

— added by Exasperated Onlooker on Friday, March 10, 2006 at 12:10 am

i have a beautiful daughter age 5 called Bethany,and i am proud to be her mother.She was diagnosed with severe autism at 2 years and 2 months.I will not stop reasearching about autism.I see it as my duty as her mum and through love.She had a difficult delivery,mmr jab and dislocated hip under anasetic.Yes any of these things may have caused autism,but what i realised along time ago is how she accuired it makes no odds,how i make her life easier and more understandable is in my view all that matters.may i wish you all the understanding of the autistc view on life
regards rebecca

— added by Anonymous on Tuesday, May 9, 2006 at 6:50 pm



Okay. I’m a BLOOD Jew born into a Unitarian family with Baptists (YUCK. No apologies. JUST YUCK!), and Catholics (I have Jesuit friends at Loyola Marymount with whom I immensely respect), and Mormons (Okay…don’t EVEN get me started on this whacked little CULT who is totally, irrevocably FUCKED UP), and others.

BUT…Autism is not a religious preference. It is not even a preference.

It is not even RELIGIOUS.

(NOTE: Where is your g_d now?)


Autism as TEH new GHEY?

SWEET. Bring it on. Seriously!

We now know that Tariq died because of medical malfeasance.

Wow. Time to sue. Someone really, REALLY fucked up.

And so…we have our own kiddos to reflect upon.

My own son, at 20-months became a totally different creature on the GF/CF diet.

Seriously. New kiddo.

NO tantrums. NO outbursts. NO solitary play. NO perseverance. No 6-hour rages.

Just a coincidence?


Just an observation.

Did I mention observation?


Floortime call…Paging Dr. Greensan.

Anton—Being Tony’s Dad

— added by anton on Thursday, August 17, 2006 at 1:21 am

Why do so many people do there best at trying to stop people from treating there kids with Autism ? If your child had cancer would you not want to help them ?

I have 2 children with Autism .

Both of my children REGRESSED into Autism !!

If you have a child that walks at 9 months , talks at 6 months , laughs and plays and does everything that any child the same age does ———-but then one day – all of that dissapears ~~ and you suddenly have a child that will not look at you , can no longer utter a single word , does not want to be touched , does not want to play with others , does not smile or laugh and screams alot —- would you believe that your child was born with Autism ??

Ofcourse not and nor were my children born with Autism !

If you also have a child that “REGRESSED” into Autism then you need to know this ;
just as your child changed , they can change back because;
Autism IS treatable !

Most importantly to all of you people that dont agree with this then fine but keep it to yourself , YOU are doing a child an injustice by tring to stop people talking about treating autism – children have been recovered from Autism not because parents remained quiet but because they SPOKE UP and SHARED there success with other parents who then went onto help there own children !!

How do I know this ? because thanks to some American parents I learned what treatments and testing were out there for autism and I tested my children and discovered that they were poisoned and after treating them my children are now on the road to recovery !

If those parents remained quiet or gave up after the many attacks they have faced for treating there kids then I would never have found a way to help my children !

I will be forever greatful to those parents – you changed my life , you helped me become a better mummy and most importantly my children now laugh and smile and enjoy life like never before !

There is no harm in testing , if you dont agree with treatement at least let everyone that has a child with autism know that there are tests out there to see if there child may be holding onto dangerous toxins – you could save there life !!!!


— added by penthius on Monday, January 22, 2007 at 7:46 am

You have illustrated my sentiments in a myriad of ways. I also believe that “less is more” when presenting the turbulent issues regarding autism.
I have a 19 year old son, my only child affected with autism, although he is one of quadruplets.
Our choices for intervention were prompted by a herculean energy that
was insatiable. We have made significant progress, and I am so so tired, but hope for more.
Your notion that our society needs to pay attention with acceptance is ausipicious, and I support this effort wholeheartedly. You are right on target that we cannot ‘hit people over the head’with information, albeit tempting.
Thanks again for your insight.
Robin H. Morris

— added by Robin H. Morris on Thursday, July 12, 2007 at 10:19 am

sam I am…you need to do for your child what is best for YOUR child. If your child were a diabetic, wouldn’t you give him insulin? Each child is special. Each child is unique. You must find what works for yours and not worry about what others are doing or not doing!

— added by peli on Saturday, November 24, 2007 at 9:51 pm