Dr. Sears, Dr. Wakefield and TACA at Autism One
Dr. Andrew Wakefield on Dateline NBC Tonight

Katie Wright: An Autism Mom Goes to IMFAR

Imfar By Katie Wright

I know you are thinking one of things is not like other…but I was actually glad to have to have IMFAR and experienced it for myself.

For years, possibly decades, parents have complained that IMFAR was an esoteric brain and gene conference peripherally associated autism…400 presentations on eye gazing, 200 social gazing, 100 on an infant’s grasp of eye gazing, genes, brain and genes, brain, genes and brain. Despite IMFAR’s proclamations of “exciting breakthroughs” few families felt any excitement and fewer children saw any benefit.

There is nothing in sight to stem the rising tide of  ASD cases. Even worse, a greater number of autistic children are suffering from serious medical problems, which have gone both unstudied and untreated.

Parents were pleased by the recent change in IMFAR’s leadership. After David Amaral was elected president many parents contacted him and expressed their frustration that their childrens’ painful and disabling medical needs had by ignored by IMFAR for too long. Imagine a breast cancer research organization spending all their time and money on genetic research and a treatment intervention that succeeded 25% of the time. I’m guessing that other 75% of women would be demonstrably unhappy- especially if they are doing the fundraising.

Dr. Amaral was very receptive to our concerns . Autism Speaks contacted Amaral as well, proposing an Autism Treatment Network presentation on the importance of recognizing and treating medical problems and sleep disorders. Sleep disorders may not sound like an urgent problem to some but there is a reason sleep deprivation is used as an interrogation tool at Guantanamo Bay.  Think about how much sleep you got when you brought your newborn home and imagine living like that for years or decades. The ATN presentations went really well, I only wish the room had been packed. Scientists and researchers need to start understanding the complexity of autism and stop studying it as only a heritable psychiatric disorder.}

Next year I hope Autism Speaks offers at least a hundred scholarships and encourages all local families to attend IMFAR. Right now the conference is too expensive for parents and if AS is sponsoring the conference they should also be offering families reduced prices. When a lecture ends at a DAN! Conference it is a free for all to the microphone. One hears the sounds of chairs being overturned, feet getting accidentally stepped on, bustling pads of papers filled with questions being extricated from folders and so on. After a sometimes exhaustive Q & A period the lecturer is inevitably followed out of the room by a dozen people wanting more information. I always thought that is how it should be! People are incredibly engaged and have many questions to ask. There is no sparing of feelings and that is OK, believe me these parents and presenters are tough, they can dish it out and take it as well.

When a lecture ended at IMFAR only a couple of people walked to the microphone. The questions were gentle and complimentary. So try to imagine what happened when Lyn Redwood and I took to the mic after the Susan Hyman presentation to ask some not so gentle and not complimentary questions. More on that later.

I hope to see IMFAR continuing on this path of change and welcoming even more clinical presentations next year. A few dozen environmental lectures would also be great. More importantly IMFAR scientists need to hear from the community of families. So fair warning, I would advise academics to toughen up as families bring their special brand of challenging,  informed and probing commentary to IMFAR next year. 

Katie Wright is a Contributing Editor for Age of Autism.


Media Scholar

Dr. Margaret Bauman? The Dr. Margaret Bauman?

What a crock!

See here, that she submitted testimony against families in vaccine court. When she discovered that she would have to appear in person to "front-stab" a child with vaccine-induced Autism she then backed out.


I think it's important for parents of children/adults with autism to infiltrate these organizations to make change. In my local PTA, the top three positions are held by autism moms. The siblings will be out in the world soon and the status quo will fall. Bet on it.

Media Scholar

Was Poul Thorsen there?

His fraudulent research sure was.

Katie Wright

I totally get why families are angry at IMFAR.
Believe me, it is mutual w/ me. I saw it for myself. I got some of the angriest looks imaginable from certain people at the conference. I take it as a compliment towards AoA! AoA may not have a billion dollar budget but it has the influence that so many of these researchers lack.

We all have our limits. I could only attend one day of the conference. There is no way on earth I could sit through 50 presentations on Fragile X or the "extreme male" brain. I only attended ones directly related to my child's issues. Whenever I ask questions (and I ask many!) doctors and researchers come to speak w/ me afterwards and want more info. That is why I went. And that is why parents' voices are important.

I am so frustrated w/ the feet dragging and fear, believe me. These scientists are moving too slowly- bottom line. It is inexcusable. However, when they address issues that are important to LIVING children- you (the parents) are the experts and if you can stand it- attending in order to represent your child's interests can be worthwhile.


There are plenty of reasons to criticize Autism Speaks, such as their scientific board that does not direct funding towards research on vaccine causation and biomedical treatments. But it seems to me that when they do something good that should be applauded. There are a lot of very hard working people at Autism Speaks doing a variety of things; it is not just one huge monolith. The Autism Treatment Network is a good thing, "dedicated to improving medical care for children and adolescents with autism". I saw Dr. Margaret Bauman speak, and she talked about refering patients to Dr. Tim Buie for GI treatment (often resulting in improvements in behavior) and refering patients to Dr. Marvin Natowicz for his "mitochondrial cocktail". As one blogger wrote about her experience taking her son to the ATN, "They don’t just think about the brain. They think about the whole body." Isn't this what we want? Yes, it's not DAN!, and there may be disagreements about some things, and Dr. Bauman is not convinced that vaccines cause autism. But she is a very hard working, intelligent person who is following her convictions.

Autism Speaks has funded some research on immune system disorders and other issues of interest to our community.

I applaud Katie for speaking out against what is wrong with AS and also for speaking out about what is right.

I don't think it serves a good purpose to simply look at Autism Speaks as an enemy, or to give up on communicating even in a situation such as IMFAR.

Judy Brasher

Katie, thanks for all that you do. And I think you are right that we need to go and try to use it as an opportunity to educate. INFAR, like the media and mainstream medicine, needs to know that we are not going away. We have to keep chipping away at the misinformation and misdirection of autism research.
When we, as autism families, start attacking one another because we don’t agree with what that person is doing or not doing, we are weakening our message. There was a discussion going on FB the other day in which several autism moms stated their decisions to not try to “cure or change’ their child because they loved the child so much just like he or she is. Does that mean that those of us who are striving to get our child or grandchild to optimal physical and mental health love any more or any less? I think not, nor do I think that we love any more than those moms. We are just at different places in this journey.
Please keep your informative articles coming.


The careful camaraderie amongst researchers has been suffocating the biomedical agenda.


That's because Hyman is a blithering idiot. Why would anyone bother to ask her questions? People know the GFCF diet works for some, and not others. When someone like her comes out and claims that it doesn't work at all, when clearly it does, they lose all credibility.

Really, stop supporting the tools at Autism Speaks and their bogus initiatives to engage the autism community at the "scientific" level. They always have been, and always will be all about pandering to the medical and science community. Autism Speaks/INSAR has no interest in getting at the truth. INSAR/IMFAR is just more proof that they will go to great lengths to legitimize their idiotic as well as ethically questionable opinions on the science behind autism.

Why on earth would you encourage people to attend that nonsense? ....and some people wonder why I don't completely trust you or your motives.


I know this is about autism.
But our family has just been introduced to bipolar and we are all fresh in it.

In bipolar they swing between two extreme moods.

Depression were they are Mad, irritable, sad, no energy.


Mannia were they are Excited, Euphoria, extreme happiness, high energy.

In the mannia phase they sleep very little or not at all. My daughter has been going though this since she had Kawasaki's at two years old, but we did not know.

This past mother's day she was mannic (I did not know) she had been mannic for two weeks and had not been able to sleep for seven days --she said.

So she moved into another phase of bipolar - something called psychosis. She was awake but not really. She said everything was like in a fog or a dream. That is when she decided there were things crawling under her skin and she tried to get them out. She remembers nothing at the emergency room only parts of it. Well she was sitting up and talking reasonably in the emergency room only just now and again she came off with something and you knew something was bad wrong.

The stupid emergency room put me out - and left her alone in a room full of sharp medical stuff. She wrapped her own wound. They said well since she is a nurse! I did not find that out untill three in the morning when she was aware enough to tell me. They said well she is a nurse - my daughter laughs about it now and says "Yeah, a crazy one!"

AnaB I asked for your email from Julie no response yet. I suppose they are very busy right now.

María Luján

Hi Katie
Thank you.
Honestly, I was really disappointed by the IMFAR conference, even this year, from what I read of abstracts and for example the kind of press given to the GFCF diet short trial. However, it is interesting that it seems a change (slow) is taking place...


TRANSLATION: The CDC anti-litigation bloc of Autism research lives....

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.


Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)