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When Autism Leads to Advocacy

Useless_doctors_fishy_diedBy Katherine Walker

There was no dramatic incident.  No very serious reaction in a short time frame.  My son just slipped away, little by little.  When I went to the 24-month check-up, I wondered with my pediatrician “Why isn’t he talking?”

The scenario is all too familiar to this community.  He had developed normally, reaching all milestones on that development chart within the normal range.  Then, around 18 months, he began to fade.  He lost words, he stopped using his fork, he started getting easily agitated, and he became less engaged with his twin sisters and me.  So by 24 months, there was a significant difference.  The pediatrician referred us to Child Find, and they ultimately said he had ASD.

After a year and a half of waiting on doctor visits at places like John Hopkins and Kennedy Krieger Institute, we got the diagnosis of PDD-NOS.  Yeah, there is something wrong with your kid, we just can’t tell you what it is.  Gee, thanks!

So forward we marched – an expensive and demanding ABA home program and preschool at a huge local school system with the reputation of being “great for ASD”.  One was a benefit, the other a failure.  The school system was awash with paperwork, bureaucracy, and over crowding by this “non-epidemic”.  He was the highest functioning kid in the room, and ultimately we pulled him out in very short order.

I finally “saw the light” when I first heard Jenny McCarthy talk about Evan.  I bought “Louder than Words” and devoured it.  I got out my son’s vaccination schedule and started to cry.  This is why; this is what happened to my son.

Another waiting period to see Dr. Elizabeth Mumper and then the testing.  Yes, heavy metals and Candida.  Again, forward we marched – GFCF, supplements, DAN Protocol, speech, OT, Floortime.

Since Jenny lit this fire, I have committed myself to using my professional experience in lobbying health care issues for corporate America to advocate for my son, and all the other children with ASD.  I was there at the Green Our Vaccines march and rally in June.  I lobbied my Congressman and Senators’ offices.  I haven’t stopped.

On November 21, the Interagency Autism Coordinating Committee (IACC) held a full committee meeting to approve the Strategic Plan for researching ASD.  I attended that meeting and gave public comments.  You can read them below.

It was excruciating to sit and listen to these folks debate how soon they could get any plans going.  They argued over how soon they could get a public awareness initiative out, and what form it should take, and whether or not they would study the efficacy of the message, or the efficacy of the mode of delivery of the message.

Meanwhile, we parents are still battling this thing day in and day out, facing physical, emotional and financial exhaustion!  The majority of folks at that table just did not get it.  Our kids are drowning, and we may too.  The help we need is URGENT!

I met Lyn Redwood and Jim Moody, both of whom I’d read about in Evidence of Harm.  I listened to mothers who had walked before me talk about their child’s improvement.  I listed to government officials talk about the darker side, when abuse and seclusion take hold of some individuals.  I was conflicted with both hope and fear.  I realized there are so many aspects to this issue -- so many divergent groups pushing their agenda.  It became crystal clear that we must really PUSH our agenda!

The IACC just had a subcommittee hearing yesterday, and will have a full committee hearing this Friday, December 12, to finish the review and approval of the Strategic Plan.  It looks like I may not be able to attend this time, but have no fear.  My fellow warrior mom Maribel McIntyre plans on being there.  We both live right outside Washington, and have become a dynamic duo in terms of lobbying this issue. 

With that, I leave you all with my comments given to the IACC on November 21:

Good Afternoon, my name is Katherine Walker.  I’m not a doctor, a scientist or an employee of a pharmaceutical company.  I’m a mom of a boy who has PDD-NOS.  I am an advocate.  You could say I represent thousands of families who couldn’t be here today.  I am here to tell you a story.

Two summers ago, I took my son Adam to a water park.  My son Adam loves the water and was getting more adventurous with the encouragement of his teenage cousin. 

As the two boys ventured further into the water, things went bad.  The cousin went a little too far.  Adam followed -couldn’t reach the bottom and panicked.  A lifeguard right next to Adam kept looking at him, but did nothing, even as Adam screamed and cried.  Being non-verbal, Adam couldn’t say, “HELP”.  Adam was up to his ears, and barely keeping his head above the water.  I ran towards them yelling, “He needs help, help him!”

When I reached Adam, I was nearly chest deep in water.  I looked up at the young lifeguard who was supposed to be watching for swimmers in distress.  “Didn’t you see him?”  I yelled.  The young lifeguard said nothing.  I got Adam out, calmed him down and Adam soon went back into the water, it just wasn’t a big deal to him.  But it was a horror for me, and a harsh awakening to reality.

As parents, we must realize that no safety system is foolproof.  We are the ones that must advocate for our children when the safety system is failing or does not have a broad enough scope.

Many if not most of our ASD children can’t tell us when they are in distress.  They can’t tell us their tummy or their bottom hurts even when they have continual gastrointestinal distress and diarrhea.  Perhaps some of you understand that.  I hope that at least some members of the IACC and those who determine what studies get funded experience this daily battle. 

Parents are in the trenches everyday fighting ASD.  We know our children; we see what works and what doesn’t work.  This is why I find it inconceivable that the reports of parents regarding causes, symptoms and treatments are labeled as “anecdotal”.  The last time I checked the scientific method, it was form a hypothesis, conduct research and experiments, and then come to a conclusion based on the results.

For example, my son Adam has responded well to the GFCF diet and I have seen great improvement in real terms of attention, verbal communication, temperament and interaction with his family and peers.  He is generally a calmer, happier little boy.  I’ve had my experiments with the diet.  Like the pizza he ate at Chuck E. Cheese’s during a recent holiday, his symptoms flared; especially behavioral symptoms: screaming, agitation, and sleeplessness.  It is unreal how gluten and casein affect my son.

The medical establishment should no longer tell parents that our everyday experience with ASD is not adequate enough to merit and trigger formal, clinical, unbiased studies.

Thomas Jefferson said:
"It behooves our citizens to be on their guard, to be firm in their principles, and full of confidence in themselves. We are able to preserve our self-government if we will but think so." --Thomas Jefferson to Thomas Mann Randolph, Jr., 1800. ME 10:151

The Combating Autism Act originally included support of the study of vaccine safety and biomedical interventions.  This is clearly indicated in the legislative history, such as the comments made on the senate floor by Senators Enzi and Dodd.  I know that portions of the bill were stripped out, but the heart of the issue is still there and we parents are on guard.  The fact that I am here this year is proof of that.

The IACC, NIH, CDC, AAP and other groups have no choice but to see the new paradigm of autism – this is a whole body issue.  This is not simply a neurological issue.  There is a direct relationship between the gut and the brain.  What we put into our children’s gut, especially when the gut is being attacked by fungus, bacteria or even viruses, has a most serious impact on how their brains function.

Even the most well known institutions aren’t looking at the whole picture.  While at a follow-up visit to Kennedy Krieger Institute in Baltimore, Adam’s pediatrician was supportive of the GFCF.  But when I informed the doctor of recent biomedical testing ordered and supervised by another doctor I shared the printed results that revealed high levels of toxic metals, and Candida in Adam’s intestine, the doctor showed little interest and moved on.  Heavy metal toxicity and a raging yeast infection were apparently not a big concern.

That summer day at the pool, a young lifeguard was not paying enough attention to my son.  He did not look close enough to see Adam’s source of struggle – even though the outward signs of distress were evident.  I had to save Adam.

I reach out for help for Adam even when conventional medicine may not approve.  When the typical safety system does not work efficiently or effectively -- when the lifeguard is not paying attention for whatever reason – I must act.  The NIH, CDC, IACC and the AAP all have roles as “life guards” in protecting our children, in discovering all possible ways to help those dealing with ASD. 

Your mission and core values MUST include an authentic commitment to uncover and curb the causes of ASD. It must be done without bias to any industry or governmental interest or initiative. It must be fair and balanced.

I thank the IACC for allowing me the opportunity to speak, and I conclude with another quote from Thomas Jefferson:

"The force of public opinion cannot be resisted when permitted freely to be expressed. The agitation it produces must be submitted to." --Thomas Jefferson to Lafayette, 1823. ME 15:491

Katherine Walker is a mom of twin girls and a son with PDD-NOS.  She has a background in government relations and corporate governance.  She lives with her husband and children in Alexandria, Virginia, where she has become active in the advocacy arena.  She also serves as a substitute teacher for the city’s school system and a volunteer at her son’s school.



"If anyone thinks the core of the problem is medical or scientific, they are wrong: it is political."

Well said. Something to that same effect has been kinda my "opening argument" in certain conversations - it seems to help set some common ground, and level-set the discussion a bit. Everyone (regardless of which particular medical or research shingle they might have hanging over their door) knows how badly the politics around any situation can screw things up royally.

Katherine Walker

Thank all of you for your comments.

Cathy -
Your comments abour your son Ronan pulled at my heart so much. I hate the idea these kids are in pain, and they know it, but they just don't know how to tell us. I admire your use of sign language. It's something I wanted to do, but never really got serious about. Adam is now verbal, thank God. Hang in there!

Robin -
I've done some things that don't work for us either. I think the key is to keep trudging along, even when we don't see the end of the tunnel. It is an uphill climb, but I keep dreaming about the day my son "returns" after being snatched by the vaccine boogeyman!

Kelli -
I will get with Kim to get your contact info. I would like to meet you and have a "pow wow" of sorts!

Gatogorra -
"Do you know what they call "anecdotes" in a court of law? Witness testimony."

I'm gonna use that line in my next public statement -- I "love" how the different parts of the system call the same thing different names, and give it different values... what's good for the goose should be good for the gander!!

John -
I agree with you completely. And I did tone it down a bit because I felt diplomacy was necessary. I didn't want to be seen as a "lunatic mother" as they so easily dub us. I wanted to appear as professional as possible.

BUT - my original intro went something like this:

I’m not a doctor who holds a patent on a vaccine, I'm not a scientist who holds the key to a lab funded by Autism Speaks, or an employee of a pharmaceutical company who holds the corporate interest above all. I am a mother and I hold the hand of my PDD-NOS son.

Thanks to all for posting, and for giving me the inspiration to keep on fighting. I will not give up until the light is shown onto this all too peverted relationship b/w medicine/doctors, PHARMA and the governement -- and the damage done to our kids!

John Stone

If anyone thinks the core of the problem is medical or scientific, they are wrong: it is political. For something to go this far wrong with our medicine and our science, something above all had to go wrong with our institutions. It is essential to understand that our children are not being damaged by a single means or a single product. They are damaged by institutions which have developed a reckless and ruthless culture of assertion and denial. So long as these institutions disregard the evidence of ordinary people their science will be a sham. Katherine gave a great speech to IACC - of course, she was being diplomatic: unlike the lifeguard they are not simply being inattentive: I do believe they mean it.


Maybe twelve years ago on a seaside holiday, we took our five year old twins on a day trip to a small island. While I was sorting out our son's encounter with stinging nettles, our ASD daughter went off down a path followed maybe thirty yards behind by my husband. He looked down to climb over a gate (she was over it like a gazelle) and when he looked up, she had vanished off the face of the earth. Our son wouldn't stay put with our bags so had to be placed with friends who happened to be passing by. We were just about to ask for a search party when, from a distance, we saw her accompanied by a young woman in a swimsuit. Our daughter was dripping wet and the young woman explained that our daughter had gone out into the sea up to her neck (in a region of the UK with strong tides). Luckily, the young woman realized something was wrong and walked our daughter back to us. Later, we worked out that our daughter had run along the path and around a corner where she was hidden by undergrowth while she ran onto the beach and straight into the sea. She had been missing for maybe fifteen hideous minutes, while we both aged ten years.

I can't now remember precisely when we stopped but we used reins (as a toddler) and, later, a wrist strap to stop our daughter from running into traffic for far longer than you would for a "normal" child.


Thank you, Katherine, for writing this essay and for committing yourself to biomedical treatment advocacy. It's a tough road, but sadly it's no longer a lonely one.

Reading about the swimming incident made me tense up. I, too, try to avoid relying on others to keep my son safe -- even if my helicopter hovering offends others who sense that I do not fully trust them.

Great point, Gatagorra, about witness testimony. And in the laboratory, anecdotes are elevated to "empirical observation."

Kelli Ann Davis for Cathy Jameson

"Then, something so strange happened. I asked Ronan if he too was happy and he signed sad (like tears coming down his forehead area, not his cheeks). I signed, "Ronan, is your head sad?" He signed, "Yes." I totally believe this non-verbal so capable, but stuck in a sick body kid knows his head is hurting and causing his problems."

This made me cry.

Reminds me of the first time I heard Martha Herbert speak. I couldn't take it -- the thought of my son's brain swelling because I had inadvertently allowed mercury to be injected into his body – so I left the room and cried for three hours in my hotel room.

Is it any wonder that some of our children are "banging" their heads against *ANYTHING* in an attempt to relieve their pain???

I’m sorry Cat. For Ronan, for Miles and for all the other beautiful “babies” who have to endure this pain.

Remember, Ronan is in God's hands -- always.



calm dragon

Thanks for speaking for all of us. I'm 10 years into this quagmire, and I'm still amazed that every story has common treads of progress, regression, diagnosis, and recovery/learning/progress with (what we consider)treatment. I'm equally floored that the medical establishment is so gagged by the mighty "DRUG COMPANY MONSTERS" that they continue to sacrifice our children to the spectrum of autistic hell.
I thank God every day for all of the verbal courageous families who share with one another as we reclaim our childrens lives with the experience of those who paved the way, and I pray for the children who are still just beyond our reach.

Amy Trail


Your words ring so true to all of us! I, too, have become an advocate in SW VA and attended the Green the Vaccine Rally and I know that your hard work has brought countless people the truth and opened many eyes! Keep up the great work and hopefully we will all be able to stop the next generation of children from being injuried the way our children have been.

Anyone that does not believe in Regression or that Vaccines Injury our kids - come and spend the day with me and our family. Our son was fine - playing with his sister, playing peek a boo, talking and that was all lost overnight. The product, according to his doctor, of a perfect storm.

I dream of the day when a treatment path is child specfic and the doctors that the children need to see are affordable and accessable.

Cathy Jameson


I just put down Jenny's latest book "Mother Warriors." I am so totally drained. I read my son's story on every page of her book. I fear most days I don't have the courage to continue to fight like I used to. What makes me sad is we try so hard to be positive and hope-filled but the reminders of 'this didn't have to happen' creep up during the tantrums, the lack of speech, the la-dee-da attitude of certain doctors and professionals and more.

Fortunately though, I can get a glimpse of who my son is when I stop and just breathe. Last night, the two of us were playing together. It was hard at first since Ronan is in a world all by himself a lot of the time. Last night, I was gently swinging him in our playroom swing and he loved it. I got his attention and started using sign language with him since Ronan has again picked up the pace and learned 2-3 new signs a week! I thought it would be the best opportunity to work on emotions with Ronan since he was so silly and happy and his joy was filling me with happiness too. I showed Ronan happy, sad, surprised and silly. He loved it. We kept on playing and I showed Ronan how happy I was--he *got* it and signed with me as I laughed. Then, something so strange happened. I asked Ronan if he too was happy and he signed sad (like tears coming down his forehead area, not his cheeks). I signed, "Ronan, is your head sad?" He signed, "Yes." I totally believe this non-verbal so capable, but stuck in a sick body kid knows his head is hurting and causing his problems. He's able to understand but has such limitations with telling us many things. I signed, "Is Ronan happy here?" when I pointed to his body and he signed "yes." I know Ronan wants to communicate with us but he's in such a foggy world that it takes so much strength to focus.

It's come down to me and our family to stand up and fight for Ronan. Thank you for standing up for us parents that can't be at these big meetings. We'll get there together.

Cathy Jameson


I was listening on the webcast when you gave your speech. It was powerful and moving and I don't know how someone could sit in a room and hear that and then ignore it. I'm hoping they don't. Thanks for your efforts.


Thank-you for your advocacy and hard work. The IACC just doesn't sense the urgency of our needs as parents and caretakers. There is also no leadership (not that I can blame anyone for not wanting to captain the Titanic). The lionshare of the initial funds to find the cause(s) and treatments of Autism should be biomedical. Start with the metabolic and immune dysfunction and go out from there. The issue of vaccine safety should ideally take from another fund, like this grant that Dr. Healy refers to in her US News article: http://grants.nih.gov/grants/guide/pa-files/PA-08-256.html (I don't see how much money is allocated to this project though)
A vax/unvax in second sibs (of autism) would certainly be quite revealing though.


Your story is multifaceted. I was struck by a compelling message how vital it is that we saturate our kids with swimming safety and lessons.
When my son was around 2, he had no fear. He was non-verbal, and had poor receptive language. One day he ran toward a pool and given his speedy pace, he nearly plunged straight into the deep end. I tackled him right before he was to drop. It was at that moment that I vowed to get him lessons, whether he wanted them or not. The following summer, he became more aware of his surroundings and those lessons were simply unbearable. He screamed and shrieked while onlookers gawked. I did not care. It was with the same energy that you speak of, my advocacy, pro-active as well.

Our story regarding "gut" issues is rather contrary to yours, however I do not discount each parent's experience. It is not anecdotal, it is fact.

Years ago we traveled to Canada for auditory training. We spent weeks there and also submitted our son's hair samples for testing. His levels did exceed normal limits.

We returned home to a new problem....my son's severe diarrhea. He was 4 years old and weighed 24 pounds, and was monosyllabic (very little language). Ultimately the pediatrician hospitalized him. He was put on iv fluids, no food by mouth. It was determined that he had contracted a parasite. It was decided that food would be introduced gradually. I guess my boy was not content with that edict. One day,without provocation or prompts he sat up in bed crying...."I want spaghetti" If I did not hear it with my own ears I would have thought it was someone else. Denying him solid food had been the ultimate behavioral therapy, unintended but significant.
He was discharged from the hospital, on antibiotics for the parasite. The diarrhea lessened but not totally. We then tried the gluten-free diet. It was a non event.
Our story cuts to 2008. Our son has progressed well. He is extremely verbal,he is not on a special diet, and he does have autism. I do not consider him "recovered", I embrace his notion of "high functioning autism", and as long has he does not plateau, I am encouraged by his progress.


Do you know what they call "anecdotes" in a court of law? Witness testimony.

Thank you so much for putting yourself in the lion's mouth for the sake of the whole community.

Kelli Ann Davis


I too heard you speak at the meeting in November -- quite moving.

It's good to know you are on the front lines helping our children. I'm sorry I missed out on meeting you while I was living in Georgetown (up until Sept) but I'd love to connect with you. Kim has my e-mail address.

Next time I'm in DC "let's do lunch" ;-)

Thanks for writing about the IACC meeting. I'm sorry you had to join our ranks, but I'm glad you refuse to *go down* quietly.



Thank you so so very much for your advocacy, and for sharing this account with us.

Yesterday we were talking about raising autism awareness. Jenny McC's work sure is raising awareness -- of the problem as well as causes and treatments.

Tanners Dad

I heard and Cried when you told the waterpark story to the committee. Cried again when I read it now. I just do not understand how people can know what these people know and be so stoic. How could they not be touched by your story? I made it through the first couple of hours of yesterdays meeting and was just not in the mood to deal with it. Even looking for a job was more fruitful than listneing to that.

dan olmsted

Hi Katherine, thanks for this great account of how you got involved. I was listening to part of the meeting yesterday and at one point, I e-mailed a friend: "these guys are nuts -- voting to plan to discuss the design and feasibility of a study at some future date that may or may not be done? lordy..." we need people with a sense of urgency, and these folks by and large don't have it. -- dan

Jen Byrd

Thank you for sharing your experiences and becoming an advocate for all individuals w/ ASD and their families.

I am glad our DAN practioners ARE LISTENING to the parents and helping to recover our kids.

mom to 2 beautiful kids on the path ot recovery

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