Susan's Blog

Thursday, January 5, 2006

Bruno Bettelheim Pans Me

I found the following review of my book on Amazon today:

Senator’s approach to autism has been obsolete for 4 years. It may be well-intentioned but totally misses what needs to be learned by parents to help their kids. Any parent who is not chelating their autistic child is dooming that child to a horrible existence that might be avoided. No parent should ever accept autism since it is really mercury poisoning and the proper treatment is to remove the mercury as soon as possible.

It was signed “Bruno Bettelheim.”
I can’t think of a more stupidly ironic way to critique my book. Cowardly, also: why not sign your real name, if this is what you believe? Confusing, too: why obsolete for four years? Anyway, Bruno Bettelheim, originator of the Refrigerator Mother theory of the autism is probably the most obsolete of autism theorists, and responsible for more suffering on the part of autism families because of its hurtful blaming of mothers. PBS recently did a well-received movie that documented this pain.

Is there a way that we can learn to have multiple opinions about autism parenting co-exist without reviling those who believe differently from us? My thing is about acceptance and living with difference, in finding happiness in the unexpected. In finding a way to connect with people who behave and express themselves differently from me, and finding the good in them. If I don’t happen to believe that a vaccine, a virus, or poor parenting caused my son’s autism, if instead, I focus on how to strengthen our connection and his skills, how can that possibly be construed as wrong?

The energy taken to hate and rant against my viewpoint is much better spent helping your own child, or better yet, yourself in learning how to be happy in this difficult and beautiful life.

As Voltaire’s Candide said, “Tend your own garden.” And be judicious with your use of manure.


Based on the phrases and construction used and personal experience as well, I’d wager substantial money that that ‘review’ was written by John Best Jr, a Generation Rescue ‘Rescue Angel’.

He is a truly odious individual who has espoused similar viewpoints almost verbatim in a number of other places. Don’t take it too personally.

— added by Kev on Thursday, January 5, 2006 at 6:26 pm

Thanks, Kev! I just thought I would use the opportunity to spread some of my own dogma. 🙂

— added by Susan Senator on Thursday, January 5, 2006 at 6:35 pm

I think that there are some mini-camps among the autism community. I know that b/c we don’t “do the diet” with our son, I don’t feel comfortable in the company of the moms who do b/c there is an unspoken vibe between us that I am not doing all I should. It’s probably my own guilt kicking in, but it just feels like those moms are judging me. It is definitely easier for me to talk to a mom who takes my approach which is probably like yours, Susan. Do what you can, but remember to balance out the needs of your other kids, your husband, yourself (God forbid!!) along with the needs of your autistic child. Can’t we all just get along!!!??

Laura (Sam’s mom)

— added by Sam's mom on Thursday, January 5, 2006 at 11:23 pm

Hi Susan:

I wrote a comment a few minutes ago and the satelite must have gone down wiping it out. Maybe it was a good thing and this will be less hostile to your reviewer.

Our children are all like snowflakes – unique. What works for Nat is not necessarily what works for Billy Ray. What helps the most is when we share what works for us in an attitude of take what works for your child and leave the rest. I see that as what you are doing.

I support the efforts to find a cure and the cause of all disabilities. At the same time our children have to get up and live today, everyday. We need to create a life that works for them while the research goes on. As a parent I have to help him do that and hopefully help others as well.

I have tried many of the alternative approaches for Billy Ray in his 23 years. Maybe had I known of them younger they would have been more success or maybe he is so unique they never would have worked. I don’t know.

— added by Peggy Lou Morgan on Friday, January 6, 2006 at 1:01 am

Ugghhh! Sounds like you’ve been attacked by one of the trolls that pops up once in awhile in the AutAdvo forum. He attacked any and all of us who did not support the “choice” of chelation (which, I might add, is medically contraindicated for autism, and has resulted in the deaths of autistic children). Furthermore, he even equated *our* choice with child abuse. Bottom line – anybody who a) is afraid to sign their real name, b) speaks from rampant emotional zealotry and c) refuses to acknowledge legitimate scientific/medical inquiry and discovery – anybody who does these things is not worthy of further attention or comment.

Mother to Jakie the magnificent and Autumn the awesome, autistic and NT twins, respectively

— added by Susan on Friday, January 6, 2006 at 1:53 am

Your comments regarding “my thing” are deeply meaningful to me. I believe that your words of “acceptance and living with difference” as well as “finding happiness in the unexpected” are very wise and demonstrate an attitude that will continue to help you facilitate opportunties and a meaningful life for your son. I also believe that they will help to change the perspectives of those who for whatever reason have a limited scope of understanding. I can only imagine the disappointment and hurt from the words in the “review”. You are right, as individuals we behave and express ourselves differently. Your way, in finding ways to connect will continue to enrich your life, your family and those who read your words.

— added by Keddie on Friday, January 6, 2006 at 3:16 am

What saddens me most about comments like that is how we in the autism community makes enemies of each other when we need each other. We share more than we differ as we try to help our kids get through their days.

— added by kristina on Friday, January 6, 2006 at 10:08 am

First off, I loved your book and this site. It seems I can’t ever get enough of being shown that I am not the only one. One quick example, the other day, when you described your reaction of seeing Nat in his class, yes, I know that sudden feeling of loss well. I keep waiting to get to the point when I don’t feel ambushed by it…

Anyway, on to my thoughts about this post. I’m not surprised my kid has autism — there are some suspiciously “quirky” people on both sides of his family tree. But I will always wonder if he was made a little more autistic than he would have been otherwise by the mercury in the vaccines he received.

I think the ‘mercury moms and dads’ who worked to get the mercury out of childhood vaccines did something absolutely, totally admirable and important. They changed history! And yet…

I couldn’t finish “Evidence of Harm,” every page got me more and more annoyed. The mercury’s out, that’s done. Anyone who thinks their family is somehow going to get compensated by the government by the harm done to their kids, get in line behind all the other people and groups that have been hurt by bad policies, here’s a few off the top of my head: Native Americans, the workers who developed lung disease because they exposed to asbestos, the people downwind from various nuclear sites who are all getting cancers and having kids with birth defects, the men from Tuskagee (oh, they got an apology, whoop-de-doo), the families of the Japanese-Amercians who were interned (they got a few thousand dollars apiece, another whoop-de-doo). I’m sure others can think of more examples.

I predict that in fifteen years, David Kirby will write another book. It will be called “Working without a Net,” and it will be about all the aging parents of adults with autism finding out that there isn’t anyone or anything to take their place.

Kirby will trace how decades of policies of ‘starving the government so it can be drowned in a bathtub’ have prevented the development of a large enough network of group homes, supervised employment opportunites and other needed supports to serve all who need them.

I wouldn’t be surprised if some of you reading this aren’t thinking “boy, is she off-topic.” But while we are arguing about everything else, the supports that currently exist, as fragmented and often inadequate as they are, are being put in jepodary. Maybe I am more sensitive to this because my kid’s an only child and we don’t have a big family. But I think the autim community is dividing and conquering itself here.

— added by Anonymous on Friday, January 6, 2006 at 10:37 am

Anonymous (above) makes a very good point here, regarding our country’s treatment of the disabled. The supports for the disabled community are pitifully inadequate in this country. We spend so much effort and time trying to get our children educated and trained, only to find that at 22 housing and supports are doled out. In a civilized society that prides itself on being the best country in the world, you have to wonder why we don’t take care of our must vulnerable any better than this. I don’t think you were off-topic; or if you were, this will be another blog post soon, I assure you!

— added by Susan Senator on Friday, January 6, 2006 at 12:42 pm

SIGH.. here we go again. Why is there this much adversary between the various groups within the autism community?? For goodness’ sakes, there are no easy answers. If there were, we would have figured autism out eons ago.

What is it going to take for all sides to see that all of us do what we believe is best for our child and that there are no right or wrong ways to go about it? Everybody needs to decide for themselves what they want to pursue. And to sam’s mom – I am so sorry that you are not comfortable in the company of moms that ‘do the diet’. I am one of those moms (the diet is shear necessity for us), and always welcome a good and honest dialogue about the pro’s and con’s (as long as I don’t get attacked for having made this particular choice for my son). I would however never presume to judge you for not pursuing ‘the diet’ or making you feel like you’re not doing all you should.

Anyway, I digress. For the sake of our children, all our autistic children, I hope that the various camps within the autism community will bury the hatchet soon. There is only one way in which we will be able to achieve the services and care our kids need – by presenting a united front and by demanding solid research – research in all relevant areas, not just genetics (although I strongly believe in the genetics predisposition theory, just genetics in itself is too easy of an ‘explanation’).

— added by Petra on Friday, January 6, 2006 at 11:22 pm


I just finished reading your book. As a parent with a son who was diagnosed in the last year, I have read so many books written by parents of autistic children. Your book stood out, not only because it had so much great tips and practical information, but because it also didn’t make me feel like I wasn’t doing enough to “fix” my son. Inspirational as those books are, they aren’t real world. I can’t mortage my house or leave my baby girl to educate my son. I am going to bookmark your blog so that I never feel like I finished your book. 🙂

— added by marlene on Tuesday, January 10, 2006 at 3:18 pm

Whether we “do the diet or not” is not the issue. I stand clearly in the “neuro-diversity” camp and think if diets and supplements can help kids, then go for it. It’s the other “stuff” that makes me queasy. I completely appreciate Anonymous’s comment about the predicated book published in 15 years about kids who were subjected to EVERY intervention their well intentioned parents could find and who are still autistic. Diets I can deal with, chelation and home-adminstering shots and drugs to kids, I can’t fathom.

I’d make the observation that those of us who choose not to “treat” and “cure” our kids autism are often made to feel guilty by those who do. Like we aren’t doing what we should do.

Susan, the one negative review means nothing, it’s amazing what a coward the author is by posting it using an alias (one designed to get a reaction, for sure).


— added by Laurel on Wednesday, January 11, 2006 at 12:03 pm