By 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.