By Johnathon Schaech
I have been a supporter of TACA for 7 years now and it’s been one of the most rewarding experiences of my life.
Since my wife Julie and I have had our first child, the amazing team at TACA has asked me to write a blog giving advice to new parents, talking about what I’ve have learned over the course of my wife’s pregnancy and the 5 months we’ve been blessed to call ourselves parents!
I’m lucky to call the experts at TACA, friends, and even more blessed that they allow me to berate them with all sorts of questions and concerns about our new baby boy, Camden.
From the very first TACA event I attended in 2007, I took home this bumper sticker. It’s been on the fridge since; I feel it says it all.
In 2007 the rate was 1 in 150… as of 2014, the numbers have risen to 1 in 88 (1 in every 54 boys.) In a more recent survey, that rate has jumped to 1 in 50. Yes, the numbers are rising, but I can confirm proudly that TACA has definitively raised awareness and along the way has helped over 40,000 families.
Our son was born this past September 2013 at Cedars Sinai. During our hospital tour, the other expecting parents were keenly aware of the multitude of medications, epidurals, Pitocin, etc. that are offered during the labor & birth process, as well as vaccinations and eye drops that are given to newborns unless requested otherwise. We knew all this going in, and all the parents we interacted with were also concerned and shared their thoughts.
Knowing we were having a boy was a little scarier – 1 in 54 is a scary number. No one wants their child to suffer no matter what. However, no other conditions are rising so rapidly as in autism.
And it’s still this great big mystery.
Please keep in mind: I’m not an expert, but I have read a lot of the new parenting books and had already delved into a lot of the autism and vaccine books since becoming involved with TACA. Even though my attention span is that of a gnat — my wife really went the distance and literally read everything she could get her hands on. Not only is she a literary publicist by profession, but she is also one smart cookie! She was amazed with the information she found and validated the concerns I had.
So we are writing this blog – Well I’m writing it and my wife is trying to correct my spelling and make sure I don’t offend anyone. So simply — we want to inspire and empower any new parents to make the right decisions for their child and family regarding pediatrician selection and anything to do with their child’s health care. After all, we are the parents and should be concerned.
What inspires me is what I have learned from other parents. It is my goal to share. Here’s what Julie and I have come up with when choosing a doctor:
1. Find a doctor that works with you as a partner. You are the parents. The doctors are educated and should work with you on a better understanding of their process. It shouldn’t be a dictatorship on either side. The doctors should be open and willing to listen to your concerns and help you with your decisions.
2. Remember, it’s almost like a marriage with your doctor. It’s give and take. (Just don’t sleep with them
3. Most importantly, they should never push anything on you that you feel uncomfortable with. Their medical opinions are just that, opinions. They are not the end all be all. It is always your decision at the end of the day. If that is not connecting or you feel pressure on decisions without information, then look for a new pediatrician.
There are many concerns families face. One concern is vaccines. The best advice I received was to learn more about them, how they work and why they are needed. Then find a doctor who will partner with you on your journey. Here is a great link for finding a doctor that fits your families’ views on vaccinating: http://www.askdrsears.com/topics/health-concerns/vaccines/find-vaccine-friendly-doctor-near-you.
One major question my wife and I had discussed was the option of an alternative or delayed vaccine schedule. The US Government claims that one of the reasons why they recommend 4-6 vaccines at some visits is in part to protect those children who may not visit the doctor regularly due to many family factors, such as financial, social or geographical. Governments are smart to set regulations for the masses to prevent major outbreaks and protect others, but those regulations don’t always apply to every person, child or family out there. If you are a parent who is willing and capable of taking your child to the pediatrician on a regular basis, then a delayed or alternative schedule could be a great fit for your family. There is a great book that TACA shared with us titled “The Vaccine Book” by Dr. Bob Sears. I highly recommend it to any parent who wants a better understanding of the process of vaccinating, the ingredients, the severity of the disease, and much more. It is not a pro or con vaccine book, rather a PRO information book! This book will help you easily decide if you want to vaccinate, choose an alternative schedule or not vaccinate at all.
I have heard many parents over the years with autistic children say they specifically blame the vaccines. That ever since their child got the “this or that” shot they were nonverbal, would not make eye contact, would stare away for hours, etc and eventually would be diagnosed with autism. But these parents don’t focus on the past anymore. They all look to the future for their children and the process of getting them balanced, healthy and capable of enjoying life again.
In a conversation with a doctor I had at my first TACA function, he used the phrase “mercury preservative” (aka Thimerosal, a preservative currently found in about 60% of the flu vaccines), because it was one of the many controversial ingredients recently splashed in the headlines. He said, “Vaccines are intended to be a great medical gift, but we have never nor will ever be able to test how much an infant’s immune system can handle. It’s not so much the vaccines I’m worried about, it’s the preservatives they put in them.” You can read all about preservatives in “The Vaccine Book” mentioned earlier (keep an eye out for what Dr. Sears says about aluminum).
Now Julie (my sweet southern belle) is from the great volunteer State of Tennessee and in a rural section out there, her cousin has a beautiful boy who is on the spectrum and they’re about to have their second child. We are helping them with their awareness. We have learned so much about accessibility and financial constraints when it comes to some families who have children with autism. It really breaks my heart when a family feels alone. Well, they aren’t alone anymore – they got us and TACA.
Now these are just my experiences; I can’t help but to be invested and moved by the personal conversations I have had with some of these families and the research I have done.
After all this experience, we have decided to vaccinate our child. That’s right! You heard me right! But… Julie and I decided to give Camden some (not all) of the recommended vaccines, but we take this process extremely slow and spread them out over time. A great perk for us is that our pediatrician’s office will not give more than 1 (ONE) vaccine at a time. We love the “built in” alternative schedule at our pediatrician’s office that aligns with our decision as parents. Our pediatrician is Dr. Lauren Feder at The Center for Natural Family Medicine in Los Angeles. She was highly recommended by TACA and is now highly recommended by us!
Here is a great reminder checklist from TACA on vaccination choices: https://www.tacanow.org/family-resources/vaccination-choices-for-families-with-autism/
I am a firm believer that if a child is diagnosed with any disease it’s not the end of the world. I’ve actually seen some of the journey can be a true gift – a gift of understanding the meaning of life. I’ve seen so many people take everything for granted, number one thing being their health. Unlike the parents I’ve met through TACA who all are incredible examples of true love. Unconditional love. Warrior love. I have also seen children recover and greatly improve. What I deeply respect is every journey is different and some may not feel the way I feel.
I always get scared thinking about not having done something for my son that I should have… I share all this to encourage new parents to learn, ask and challenge yourselves to grow with our ever changing and challenging environment. Take the time. Don’t be scared.
TACA has always simply asked me to help bring awareness. Autism is a puzzle and each child is a part of it. If we work together, get rid of the politics and fear, we stand a better chance of doing what my father the cop always told me, “Defend and protect God’s little ones.”
If you suspect autism or have a child diagnosed with autism and want to learn more, please read: https://www.tacanow.org/newly-diagnosed/. I have seen many kids make great strides forward getting connected to TACA!
“Our lives begin to end the day we become silent about things that matter.” Martin Luther King, Jr.
Love, Johnathon Schaech (Husband to Jules and father of the greatest blessing I’ve ever been given, Camden.)
By Lisa Ackerman
You cannot go a day without a healthcare story being featured in the news. The Affordable Care Act, chronic health issues and access to health care have grown into one of the largest issues in American households.
In the autism community, we are aware of these issues all too well. For decades, individuals with autism have been told that every symptom resulting in behaviors is due to their autism diagnosis. Today, we know that treating symptoms in individuals living with autism can greatly improve autistic behaviors.
On this blog, we have expressed many times that kids with autism get sick more often than their typical peers. There is research to support this (1.) We answer numerous calls, emails, and questions at a variety of TACA efforts (meetings, conferences, coffee talks and social gatherings) — the health of the individual is always one of the questions often discussed. We know many families want help for co-morbid medical conditions that are treatable (2.)
Recent studies have shown that individuals with autism often take prescription drugs to help with behavior issues (3.) Drugs aren’t always the answer. Our kids need comprehensive functional medical care, not 10 minutes with a doctor every couple of years (4.) Why aren’t many (not all) doctors looking for the cause of what may be ailing patients?
If you are facing some health issues or have a child living with autism, please do me a favor and watch this short 6 minute video:
I love you Dr. Mark Hyman—please keep blogging and showing these videos! Your reach not only helps many people experiencing mystery ailments, it also helps individuals living with autism!
Many TACA families are look towards functional medicine. We have many stories available documenting these successful, life changing efforts (5.)
Get to the root cause of your medical problems and don’t just mask the issue with a pill. Ask for comprehensive medical testing so you or your child can obtain treatment. The goal is good health, right?
If you are a parent living with autism, wondering where to get started, reach out to TACA (6.) It’s never too late and we are not embarrassed to talk about poop, sleep, seizures, immune or other issues of great concern in individuals with autism.
By Dr Bob Sears
I was really hoping that my latest blog would be entitled “Finally, Someone Cares About the Autism Epidemic!” But alas, it is not to be. The word “epidemic” is being reserved for the hundred or so cases of measles we see in the U.S. each year (no fatalities), or the very tragic twenty to thirty annual deaths from whooping cough. But autism? Don’t worry, it’s NOT an epidemic, because the government continues to reassure us it’s not an epidemic (Past blogs have been featured here 1.)
Tell that to the one million or more children currently affected (2.)
Remember back when autism was 1 in 10,000 and eventually 1 in 1000? Then 1 in 150 came along, and some of us got worried. Last year we were told it had jumped to 1 in 50. So, I was certain that “the powers that be” would finally step up and declare an emergency. Either that, or show us research that demonstrates autism is on the decline. But silence? SILENCE? What’s up with THAT?
What got my blood boiling again was the latest news (which I didn’t actually see on the NEWS): 1 in 48 Minneapolis children ages 7 to 9 have autism (3.) For Somali children in the city, the number is 1 in 32. We’d heard about the Somali problem a few years ago, and the government figured the Somali issue was due to some sort of genetic factor. The rest of our children in the area, whose parents were voting constituents, were safe. Not so. This latest study shows that Caucasian children in the city have an autism rate of 1 in 36. In other ethnicities, it’s less-commonly identified, thus diluting the total number down to 1 in 48. So, it’s not just some genetic factor unique to certain populations.
As autism continues to rise nationwide, we are no closer to an answer as to why or what. We know it’s partly genetic, but why? We know it’s largely environmental, but what? We all have our theories, and we have some great treatment options to help improve, and in some cases, resolve the disorder. But as long as the government continues to pretend that this isn’t an emergency, and continues to hold back funding for the right kind of research, I’ll have to keep writing on this blog, and continue seeing new patients with autism in my pediatric office every week. I want to go back to treating diaper rashes, colds, and smiling sympathetically as moms complain that their babies aren’t sleeping through the night. You know, the old days, when children were healthy, and virtually all of them developed and thrived socially and behaviorally as toddlers.
I’m tired of getting my weekly “Eye on Influenza” newsletter from the public health department. Where’s my “Eye on Autism” weekly update? If 1 in 48 of my infant patients is going to develop a disorder, I want to know that the government is on top of it. I want to know that someone, anyone, cares.
Dr. Bob Sears
Pediatrician, TACA Physician Advisor, and author of The Autism Book
1) Past Dr Sears previous “Who Cares” Blogs:
2) Autism Statistics http://www.tacanow.org/family-resources/latest-autism-statistics-2/
3) Minneapolis Somali Autism Spectrum Disorder Prevalence Project 2013 http://rtc.umn.edu/autism/doc/Autism_report.pdf
By Lisa Ackerman
For months we have been watching and waiting receive a positive outcome for Avonte Oquendo. Avonte was last seen on October 4, 2013 when he left his school. He was non verbal and diagnosed with autism.
Sadly, remains found this past week were identified to be Avonte’s. His remains were found 11 miles away from where he was last seen (1.) This tragedy could have been prevented. The most fragile members of our community need protection and their families need support. God Bless Avonte and his family. My heart aches for them.
The family and Perecman Law Firm would like to thank everyone for all the support and prayers that have been given. They are incredibly appreciative for the love people have shown. If you would like to send condolences to the Oquendo family, you may do so and mail to the following address: The Perecman Firm Attn: The Oquendo Family 250 West 57th Street 4th Floor New York, NY 10107.
Since 2011, 42 children with autism have died from wandering (2.) TACA applauds the efforts of the National Autism Association and their work on Autism Safety in school environments, wandering and other key issues affecting children with autism spectrum disorders daily. We encourage parents to investigate and utilize these resources to hopefully always keep their children safe (3.)
By Lisa Ackerman
Martin Luther King Jr. means something special to this generation as he did to the ones before us. He was a true inspiration that continues to inspire many today.
In honor of his birthday children in school get a holiday in his honor. Adults should re-read some of his speeches and be reminded of his leadership (1.)
I look at Martin Luther King Jr almost everyday. Some heroes help guide me every day (2.) We all need some inspiration to drive missions forward.
(Inspiration photos in the TACA kitchen)
Even decades later his iconic speeches have a way to motivate individuals to positive action. These speeches and important messages are greatly missed. What this world today needs is another Martin Luther King Jr. Selfishly I want this new icon something like Martin Luther to focus on autism.
Happy birthday Martin Luther. Thanks for making a path.
(republished from the TACA now blog January 2013)
By Richard E Frye, M.D., Ph.D., Shannon Rose, Ph.D. and S. Jill James, Ph.D.
The number of children diagnosed with autism spectrum disorder (ASD) is alarmingly high and appears to be continuing to rise. Despite decades of research, the cause of autism is still not clear. The majority of research into the causes of autism has continued to concentrate on genetic disorders, despite that fact that single gene or chromosomal defects only account for a minority of cases of autism (1.) Furthermore, recent research has demonstrated that environmental factors have at least as much and possibility more influence on the risk of developing autism as compared to inherited factors.
Several areas of research have started to become recognized within the last 10 years which implicate abnormalities in the way the body and the cells function in individuals with autism. These include abnormalities of: 1) the energy generation system of the cell known as the mitochondria, 2) the regulation of toxic molecules know as reactive oxygen species and 3) the immune system which protects the body against harmful organisms. What is important about all three of these biological systems is that they all can be negatively influenced by the environment depending on a genetic predisposition. In addition, all of these abnormalities are known to interact with each other such that an abnormality in one can cause an abnormality in the other. For example, dysfunction in immune cell mitochondria can result in an abnormal increase in reactive oxygen species, which, in turn, can further damage the mitochondria resulting in more mitochondrial and immune dysfunction. Thus, these abnormalities can interact with each other to create a vicious spiral which could result in significant damage to the cells in the body.
Until now these potentially detrimental interactions between reactive oxygen species and mitochondria in children with autism have remained primarily theoretical. That is, research has separately demonstrated problems with mitochondrial function and increased levels of oxidative stress in individuals with autism but few studies have demonstrated that there is a link between these two. The few studies which have demonstrated a link between increased levels of reactive oxygen species and mitochondrial dysfunction but these have only been correlative associations, making it impossible to know which came first or whether both abnormalities were initiated by something else like inflammation.
Just last week, researchers from the Arkansas Children’s Hospital Research Institute’s Autism Research Program published a research study which provides insight into the connection between mitochondrial function and oxidative stress (2.) These researchers measured mitochondrial function in cultures of immune cells derived from children and adolescents with autistic disorder as well as age and gender matched control cells before and after adding a chemical that increased reactive oxygen species. It was found that a subset of cells in the group of individuals with autistic disorder were highly sensitive to the increase in reactive oxygen species such that only a low level of reactive oxygen species was needed to make the mitochondria fail. This sensitivity of reactive oxygen species was found in approximately one-third of the cell cultures derived from children with autism. What is also interesting is that even without the added increased levels of reactive oxygen species mitochondrial function of this subgroup of cells appears to be different, demonstrating marked mitochondrial overactivity. These researchers also identified a molecular target in the mitochondria that might be abnormal in this subgroup of individuals with autism. A protein called uncoupling protein 2 which regulates reactive oxygen species at the site of the electron transport chain was found to be increased in this subgroup of cells.
This study helps clarify the connection between oxidative stress and mitochondrial dysfunction. It suggests that mitochondrial function can be particularly sensitive to reactive oxygen species in individuals that have a particular predisposition. The study also suggests that this sensitivity is found in a subgroup of individuals with autism. Interestingly, reports have demonstrated that some children with autism may have a different type of mitochondrial disorder than is commonly recognized as mitochondrial disease. Indeed, children with autism and mitochondrial disease have been shown to have over activity of the mitochondria, rather than the under activity that is typically associated with mitochondrial disease in non-autistic individuals. In addition, recent meta-analyses have suggested that approximately one-third of patients with autism have blood biomarkers of mitochondrial disease.
Altogether, this study, along with previous research, suggests that a significant number of children with autism may have a novel type of mitochondrial dysfunction. Furthermore, this type of mitochondrial dysfunction appears to result from a predisposition (potentially inherited) combined with metabolic stressors (increased levels of reactive oxygen species). As an increase in reactive oxygen species causing metabolic stress is ubiquitous, resulting from a wide variety of environmental exposures, this is potentially a very important connection between environmental factors and cellular dysfunction. This study demonstrates one potential way in which the environment can influence an individual with a predisposition to cause mitochondrial dysfunction. Most importantly, this suggests that it might be possible to identify individuals with this predisposition early and provide treatment that can protect them from the influences of potentially detrimental environmental factors.
Editors note: I have enormous gratitude for this study and the researchers work. Many TACA families have reported back abnormal labs regarding mitochondrial function. Following American Academy of Pediatric treatments for these abnormalities children and their autistic symptoms greatly improve. For families looking into more information on the tests, potential treatments and what to do next please see the work of TACA Physician Advisory Dr. Dan Rossignol: http://www.rossignolmedicalcenter.com/simple-approach/ – Simplified Approach to Mitochondrial Dysfunction in Autism ~ Lisa