By Holly Bortfeld
I went to the IACC meeting in Washington DC on April 8, 2014 (1) to testify in front of the committee about my family’s autism journey. I took my son with me, as I am a single parent and have never had respite care. Standing over 6 feet tall, my son is 18 years old, and terribly handsome, if I do say so myself. He sat there for 6 hours in a boring room and never made a peep. He was awesome.
A man who I’ve known over the internet for many years was there to testify as well. He came up to me and my son and as we were talking, he looked at me and said “He’s so, so good, what did you do? Please tell me, what did you do?” His eyes were pleading and I thought he might cry. I gave my usual joke when people compliment me about my kids “Oh, plenty of beatings. And biomedical! (2)”
Of course I knew about his son, 6 years older than my son and very severe, nonverbal, destructive to himself and others. I had seen video of his son before, and even just remembering it makes me cringe. It’s terrifying to be afraid of and for your child at the same time. It is heart breaking. This was his son who he loved beyond all measure and he wasn’t able to fix him, to make him safe in his own body or his world. There is grief and there is devastation. This is when they collide.
Working for TACA, where we talk about recovery, treatment, hope and health all day, every day, I am often asked “Well since you work for TACA, your kids must be recovered, right?” And then I have to go into the evolution of treatments and recovery, over and over again, so I thought I’d just write it down so I could send it to the next person who asks for a link to all the information.
When my son was diagnosed back in 1998, the gluten-free, casein-free (GFCF) diet was just coming out. There was no other diet, no chelation, no MTHFR or methylation pathways discussion, no mitochondrial treatments, no Leucovorin, no gastrointestinal (GI) treatments, no IVIG, no antifungals or antivirals, nothing that we now know to make MASSIVE improvements and lead to recovery. Basically, we were walking to school uphill in the snow, both ways.
The diet was in the dark ages too. There was no Udi’s breads, no coconut yogurt and ice cream, no Daiya cheese. There was something terrible called Poha, which even being a caterer with a chemistry background, I couldn’t make into anything edible. I can remember standing in the health food store for hours trying to decipher what everything was. All I had to do was stop trying to recreate the SAD (Standard American Diet) into a GFCF version of it. What I needed to do was cook whole meats, vegetables and fruits. Unprocessed whole foods are key. These are inherently GFCFSF, and they are the basis for health. I didn’t get it then, but I do now.
One of the first questions about the diet that I get asked is “how long do you have to keep your child on it?” Well, once you “get it”, you won’t take him or her off it. My kids have been on the diet since 1998 and short of some miracle treatment, I can’t ever foresee going off it. Whole, healthy foods are the basis for health, autism or not. We’ll keep the diet, gladly. My kids are healthy so we don’t look back.
Secretin (the real porcine stuff, not the useless synthetic stuff) came out shortly after we started the diet and to this day, I know more kids who drastically improved on this, including my son, than any other treatment to this day, other than chelation. But due to many “political” reasons, secretin was yanked off the market. Another year and chelation came out. So we had diet and chelation. Awesome, but like many treatments, only a tiny percentage of kids recovered from just those things. It would be another 2 years before IVIG and GI treatments hit the scene, a few more for antivirals and antifungals, and another 8 before mitochondrial and Cerebral Folate Deficiency (CFD) treatments came along. All this time, our kids were getting older, bigger, with less chance of recovery. Yes, they were getting healthier, but they weren’t recovering and maybe they never will. That’s ok, we’ve learned to value healthy and happy and we’re good with it.
While biomed does work for all ages to bring health and mitigate pain, so much damage has already occurred and for some it may be irreversible. Not in all cases, but in most, I suspect. Does that mean you don’t try? HELL NO! But it means you temper your hopes for recovery and realize that a kid who is safe in his own body is worth everything in the world.
The older kids didn’t get the option of the treatments young children have today. They just didn’t exist until it was too late to have a huge impact. It was too late for ours, but not too late for yours, hopefully. When that dad looked at me with those sad eyes, I recognized myself when I see parents with little tiny kids just diagnosed, and what I’d give to know what we know now and be able to give it to my kid. I’d move heaven and earth to have that chance. Just like that dad would.
For 16 years I’ve worked with many families, some were hot-to-trot on treatment, while others couldn’t be bothered. Regardless, my message is the same every time: please try. It’s every family’s choice which path they want to take and I never stand in their way. But I also make it a rule to never work harder for a family than they are willing to work for themselves. I’ve seen a lot of kids recover and that’s great but I’ve seen countless kids get drastically better, including mine, who went from very severe to moderate autism to pain-free and verbal with biomedical treatments. Even the NIH recognizes autism recovery, so I know we are making progress (3).
When TACA parents say “I wish I could convince this mom at speech therapy to try biomed because her kid is in so much pain but she just keeps giving him junk food and medications”, I say “Nope. You cannot convince someone who isn’t ready to learn. What you CAN do, however, is let them watch your child grow, excel, be happy and healthy and one day, as they go through the millionth hissy-fit over something seemingly insignificant, that mom will say to you “Your kid is so, so good. What did you do?” Then you have them. Tell your story. Let them decide.” I’ve seen that work more times than I can count. I then leave the door open so that these families can ask for help anytime.
Parents of young kids don’t know how good they have it by comparison. I, and many parents of older kids, would shove you out of a moving vehicle to be in your position – having the possibility of recovery and the tools to get it. So much has been invented for you, researched for you, the roads paved, the burden lessened. The next time you see a mom with a 20+ year old, thank them for their service and for paving the way. No doubt they helped your kid be able to get something that you will take for granted, even if it was just awareness. Appreciate these families who went first.
Is everything handed to you on a silver platter, all neat and tidy, wrapped up in a bow? No, not even close. You will still have to fight, claw, beg and borrow to get what you need, but there is so much now, and it works! And there is a huge community to help you. You just have to want it badly enough, and ask for help. TACA has many tools to help – local chapters, free parent mentors, our website with our “On a Budget©” series, insurance & “Who Pays for What” resources, webinars, conferences and much more (4). Ask for help and you will get it. We can help you help your child.
I urge all parents of younger kids to think long and hard about biomedical treatments and know that you will never get this time back. You’ll never get a chance to do it over again and pick a new path next time. Treatment works. Time is not on your side. You have the ability to get your child better now. Leave no stone unturned, do everything you can. Please spend this time wisely.
1) IACC Broadcast of the meeting and my talk http://videocast.nih.gov/summary.asp?Live=13929&bhcp=1
4) Parent resources:
- Chapters https://www.tacanow.org/local-chapters/
- Mentors https://www.tacanow.org/about-taca/parent-mentor-program/
- Website www.tacanow.org
- “On A Budget©” series https://www.tacanow.org/family-resources/autism-on-a-budget-series/
- Insurance https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
- Who pays for what https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
- Webinars https://www.tacanow.org/webinars/
- Conferences www.realhelpnowconference.org
Editors note: we appreciate Holly and all she does for TACA. She is truly creative, informative and helpful to families. Thank you Holly!
By Lisa Ackerman
There is some incredible new research on autism and treatable, co-morbid conditions being released on a regular basis. This week, a new study has demonstrated strong results in emerging autism subtypes.
I love seeing this new research! It gives me great comfort to know that more research on autism treatments has been done since 2005 than all previous years combined (1.) That opens the door for treatments that can greatly improve the lives of individuals living with autism.
A new study on Mitochondrial Dysfunction & Autism was just released: Neurobiological Subtype of Autism Spectrum Disorder: Evidence from Brain Imaging. Here is the link:
Add this great study to the Dec 2013 study below and now we are starting to see distinct subgroups:
Co-morbidity Clusters in Autism Spectrum Disorders: An Electronic Health Record Time–Series Analysis http://m.pediatrics.aappublications.org/content/133/1/e54.short
These will hopefully help families understand the many medical issues their children may face. After almost 14 years helping families, we know that many children diagnosed with autism face many health challenges (2.) We know that when these issues are addressed and treated children can recover and many improve dramatically (3.)
Thankfully, answers from great new research continue to come in. Autism is treatable through therapies and medical interventions unique to each individual’s need (4.) There are some great tools that can help guide families going through this journey (5.) Studies like these will make that path much easier for families to follow.
5) Mentor program https://www.tacanow.org/about-taca/parent-mentor-program/ & TACA Autism Journey Blueprints https://www.tacanow.org/family-resources/autism-journey-blueprints/
By Dr Bob Sears
The reason we don’t have to care is because autism has ALWAYS been this common. There’s no real rise; we’ve just gotten better at diagnosing it. The government and many health experts are very adamant about this “fact” because, if word gets out that autism is truly on the rise, people are going to start wondering “why?” And, God forbid, if people actually realize there’s a real epidemic, instead of simply an outbreak of good diagnosticians, then they are going to get very concerned.
So, what happens when too many concerned people band together to try to effect change? The government listens. Or it doesn’t. What happens when it doesn’t? We are finding that out now. People start theorizing on their own as to why autism has risen so dramatically. And we wouldn’t want that, because people will come up with some really crazy theories as to what is causing autism.
Instead, if we can convince people that autism has always been this common, then they won’t worry so much about what’s causing it. It would probably just be some genetic factor that’s always been around. Maybe there’s something about the environment that we’ve been exposed to for centuries. But people won’t panic and start coming up with all kinds of crazy ideas about something NEW that might be causing a recent rise in autism. And the CDC can take its own sweet time in coming up with the answer. It might take a few decades, but what’s the rush? Since it’s not really increasing, and there’s unlikely to be a NEW cause lurking around, we can put the matter into the hands of our scientific community and let them run with it. Or crawl with it. Science takes a long, long, long, long . . . . . . long, long time to come up with answers to complex problems–especially when politics, money, and big business are involved.
So, let’s pause and review the numbers:
Decades ago, we thought autism affected about 1 in 10,000.
In the 80’s, we estimated 1 in 2,500.
Then the CDC started collecting data in a coordinated manner that allowed us to closely monitor what was happening. The CDC studies groups of 8-year-olds all born in a given year in various cities around the country and determines the rate of autism in those 8 year olds. Here are the data we have so far:
Studied in 2002, the rate of ASD for children born in 1994 was 1 in 150.
In 2006, the rate of ASD for children born in 1998 was 1 in 110.
In 2008, the rate of ASD for children born in 2000 was 1 in 88.
In 2010, the rate of ASD for children born in 2002 was 1 in 68 – this latest report. These are children born TWELVE years ago at this point. And it’s now 1 in 42 boys and 1 in 189 girls (1.)
So what is the rate now, for kids born this year? We don’t know. At the rate we are going, what’s it going to be? 1 in 40? 1 in 20?
Growing up, I don’t remember meeting ANYONE with autism. During my years in medical school in the early 90’s I didn’t see a single case. When I started as a pediatrician in the late 90’s, I thought autism was Rainman. I then began to see the kids with autism come in for help. I saw maybe a few each year at first; then, one per month. Then, they started pouring in and I hand to turn some away. I started seeing regressive autism in my own toddler patients whom I’d been seeing since birth. Now it’s 2014 and it’s still climbing. It’s becoming so common that I am thrilled when a whole week goes by without having the “I’m worried your toddler may be showing signs of autism” talk with a patient.
So, who’s right and who’s wrong? Is autism increasing or not? I don’t think anyone’s arguing that it’s actually 1 in 68 kids now. But if this is a real rise, at the rates we are seeing, and this latest number is for kids born TWELVE years ago, we are in deep trouble! We are falling apart and I have no doubt that it IS a real rise.
We can’t abandon science. The scientific method is important. What we NEED is for EVERYONE in the medical science community to ban together to figure this out. We need to start calling it for what it is: the most devastating medical emergency of our century. If we don’t find an answer soon, the day will come when we start screening all kids to identify the developmentally typical ones so that we can know who not to start early intervention therapy on. We must focus our research on environmental factors which cause the genetic and metabolic changes we see in autism. And we must make it stop. (2,3.)
Meanwhile, we’ve gotten pretty darn good at treatment and offering some preventive measures. That’s where organizations like TACA and MAPS (4) really shine. But finding THE CAUSE, and bringing an end to autism – that’s what we really need.
Dr. Bob Sears
Pediatrician, TACA Physician Advisor, and author of The Autism Book
Dr. Bob Sears blogs on TACA now:
By Janice Kern
When I found out I was pregnant, we had only been living in our community for a couple of years but I already had established some very good friendships with three special women. At that time, there were 4 children among the four of us. Kim and Jalene had two children each. When I told them along with Rachel that I was pregnant, they planned a baby shower. It’s what good friends do. There are other very special friends but these three friends stand out in the crowd and you’ll understand why.
When our son, Kenny, was born, Kim, Jalene and Rachel visited us in the hospital. I asked Kim if she would be an extra-special person and consider herself the baby’s Godmother. Of course, she would. We used this as an excuse to get together and celebrate the baby and our friendships. It goes without saying that Jalene and Rachel celebrated with us too. All our husbands were there with us every step of the way. Joe and I each have three siblings who would have gladly taken on this role as our son’s Godmother but with no family within a 3 hour drive, we wanted to give our new baby someone to think of like family who was close by according to geography. We had no idea how this would come to be so significant in the years to come.
A year later, I was pregnant again. When our second son, Charlie, was born, I asked Jalene if she would be the baby’s Godmother. Of course! We celebrated again. Rachel and Kim were there. And our husbands. And life started to get a little….busy!
A year later, I was pregant again. Our third son, Tommy was born on a snow-filled day in March. Three of our first visitors at the hospital were Rachel, Jalene and Kim. Of course other good friends and family joined in too. But, there was no delay in asking Rachel if she would let us call her this baby’s Godmother.
Kim, Jalene, and Rachel. By the time Tommy was born, there were 9 kids among the 4 of us. And life was getting a little . . . busier.
Then. . . life halted. Time stood still one day in my living room. A woman said to me “I think Charlie has autism.” I knew there had been regression and there was something wrong but I had barely heard of autism and knew one person in the entire world with that diagnosis. Charlie couldn’t possibly have that. We decided to either rule out or confirm the therapists’s suspicions as well as our concerns and took Charlie to see a pediatric psychiatrist/neurologist. I told Rachel, Kim and Jalene what was happening. None of us really knew what this meant. But when we came home, supper was made. By these amazing friends. We told them Charlie was likely going to be diagnosed with autism officially. There is no reaction for this. We were the first family they knew to go through this.
Two years later, Jalene noticed that her son, Ethan was losing skills. He was diagnosed with an autism spectrum disorder at age 2. It’s been 8 years since that day and I still can’t believe it. It’s difficult to say this but because of them, our life got better. We were no longer “the only ones”. But if we could have remained the only ones, we would have.
Eight years later, Rachel had concerns about her youngest child, Keegan. He was diagnosed with autism at age 2. Shortly after his diagnosis, Rachel was in my living room for a fundraising event for TACA. She shared with people that Keegan was recently diagnosed with autism. My biggest concern at that moment wasn’t about Keegan. It was about everyone’s reaction upon hearing his diagnosis. I was relieved that they were shocked and concerned and expressed disbelief. Thank goodness my friends and neighbors were shocked, concerned and in disbelief. A diagnosis that was once so rare I had to describe it and explain it to people has grown to epidemic proportions and that is something to be shocked about. They were completely shocked.
Kim’s family is not affected by autism. What I mean is that none of her children has a diagnosis of an autism spectrum disorder. However, her family is significantly affected by autism through our families. Her husband is never seen without a TACA wristband on his arm and they both financially support TACA every year as a way to help our families and others. They epsecially notice the hard work and challenges autism brings and cheer us on while noticing progress.
Collectively, the four of us now have 17 children. Three of those 17 children are diagnosed with an autism spectrum disorder. Fortunately all three of our children with autism have made significant progress. We are all involved with TACA and utilize the help of therapists, doctors, great teachers, family and friends.
I grew up going to my grandparent’s farm. They had ten children and thirty-five grandchildren. Of those thirty-five grandchildren, zero were diagnosed with autism. There is not better diagnosis that is causing there to be a higher number of cases of autism. It’s not as though some of my cousins actually had autism but they were “missed” by doctors. None of my cousins were diagnosed with autism because none of them had autism.
The latest announcement from the CDC regarding the rate of autism as 1 in 68 children is shocking. We are all affected when numbers are of this magnitude.
TACA Conference Coordinator & North Dakota Chapter Co-Coordinator
Want 2 minutes of inspiration? Watch this video of my son affected by autism and see his progress thanks to many friends, doctors, teachers, therapies and of course help from TACA.
Want to share your own story or activate for #AutismActionApril?
This is the third year in a row the Centers for Disease Control (CDC) has announced new autism rates right before April (1), a month that has been designated as autism awareness month. For years, TACA likes awareness but appreciates ACTION hence why we call this effort #AutismActionApril.
As I have mentioned in previous announcements, if you weren’t worried about autism before, you need to be worried now. Autism now strikes in 1 in 68 children. Back in 1970 this rate was 1 in 10,000.
We have heard the comparisons before: if 1 in 68 children (1 in 42 boys, 1 in 189 girls) were being kidnapped there would be riots in the streets (thanks Johnathon Shestack for this reference and your work.) Why no response with the alarming increase of autism?
We treasure our children. We do not treasure autism and what it does. Individuals with autism face enormous challenges, some requiring care for life. Alarm bells are ringing, but who is listening?
The annual cost of autism is $137 billion a year (3.) This is a 2012 number that is also in need of an update. Even with those outdated costs, what can’t be measured is the hardship endured by families and individuals living with autism. Those costs are much higher.
I have often compared autism to other epidemics. There is a scene in a movie called “AND THE BAND PLAYED ON” with Matthew Modine that really captures my feelings as a parent. (I get chills every time I watch it.) This scene needs to play out in real life for autism. WHAT DOES THE NUMBER NEED TO BE FOR AUTISM TO COUNT? For action to take place? If you missed it or need a reminder, please check it out:
Autism can also be deadly. Ask the 44 families who have lost a child to autism and wandering deaths since 2011 or to countless other medical issues such as seizures.
We need to rally the community to increase the public’s awareness and support about autism. I dream about achieving the same level of support that other conditions have been able to achieve. We need not only awareness, but action. Ultimately, we need to be smarter about addressing the needs of an epidemic before the costs are more than this society can bear. Let’s not forget about the future of our children. What happens when parents are no longer to here to care for them?
We know what is needed for families. We had hoped that since the inception of the Interagency Autism Coordinating Committee (IACC) in 2006, there would be positive change (4.) More than 7 years later, autism rates have increased, services and support have decreased, and we are nowhere further along with answers and support for 1 in 68 children and their families. In my opinion the IACC has failed to provide any solutions for families.
We need to do more. #AutismActionApril is almost here, so let’s take action to make a difference! (5.) Will you help? The 1 in 68 are counting on you.
1) Autism Rate Announcements: https://www.tacanow.org/category/news/
2) Dr. Bob Sears blogs:
http://tacanowblog.com/2013/01/02/top-2012-tacanow-blogs/ and http://tacanowblog.com/2013/03/20/so-autism-is-now-even-more-common-anybody-care-yet/ and http://tacanowblog.com/2014/01/27/so-autism-is-even-more-common-than-last-year-who-cares/
3) Autism costs http://tacanowblog.com/2012/05/31/the-annual-cost-of-autism/
5) Ways to activate this April http://www.tacanow.org/ways-to-help/autism-awareness/
By Dr Bob Sears
A decade ago, many researchers believed that autism was primarily a genetic disorder, and a large amount of funding was spent searching for answers in that direction. Some even believed it was ALL in the genes. The genetics of autism are interesting, but what’s more important is to understand WHY the genetic changes are occurring in the first place. The answer: Environmental toxicity. And this toxicity doesn’t just affect the genes; it harms various organs, particularly the brain. The result: Autism and other neurodevelopmental disorders.
A new study, published this month in PLOS Computational Biology, provides more proof that environmental toxins may be a causative factor in autism (1.) The University of Chicago examined health data from over 100 million people and compared the rates of certain congenital malformations (birth defects) to autism (ASD). We know that various chemicals (like plastics, some medications, pesticides, and others) cause birth defects; researchers wanted to know if counties in the U.S. with higher birth defects also had higher rates of ASD. A correlation could mean that the same chemicals which cause birth defects could also be responsible for ASD. The results of the study revealed a resounding YES!
The study showed that for every 1% increase in birth defects of the reproductive system in males, there was a corresponding 283% increase in the rate of male ASD in that particular area of the country. For non-reproductive birth defects, the results were less significant, but still interesting (32% increase in ASD for every 1% increase in other birth defects). Even those with intellectual disabilities (but not autism) showed a 94% increase for every 1% increase in birth defects. This implies that whatever toxins are causing these birth defects are likely linked to ASD as well.
Here’s the really good news: families need to know that many (not all) symptoms and co-morbid issues we see in many individuals with autism are treatable.
This study demonstrates a direct correlation between toxins causing physical birth defects and toxins causing autism. It’s not just due to random genetic changes; it’s environmentally-induced. So what do we need to do?
Put more funding into identifying specific toxins which are responsible for ASD. We need to start spending money where it will count the most. Focus on the environmental factors now that research is pointing us in that direction. Let’s identify the direct causes so we can begin reducing autism rates now.
Dr. Bob Sears
Pediatrician, TACA Physician Advisory member and author of The Autism Book
By Lisa Ackerman
Everybody needs a friend. Children with special needs such as autism, learning delays and other disabilities can struggle finding friends who are patient, friendly and open minded.
According to the Centers for Disease Control (CDC) 1 in every 6 school aged children have a neurological condition. 1 in every 88 or 1 in every 50 have autism (1,2.) If you don’t know someone with autism or other neurological condition you soon will. That is why this article is so important to help guide typical children how to be friends to someone with special needs.
Parents can help their typical children better understand and include children with special needs by letting them know that not everyone acts, learns, communicates and plays the same way they do. It is also important to let your children know that everyone needs a friend and they most significant thing they can do is to try!
Here are some tips on how you can set the stage for your child to develop new friendships with special needs children:
- Begin by teaching your child about disabilities: the more the child understands, the easier it is to become friends and accept individuals with differences. Some great books that share a great message include:
- I Love my Brother! A preschoolers view of living with a brother who has autism: By Connor Sullivan
- My Brother Charlie – by Holly Robinson Peete & Ryan Elizabeth Peete
- A is for Autism F is for Friend – by Joanna Velasco
- Andy and his Yellow Frisbee – by Mary Thompson
- Ian’s Walk – A story about autism – By Laurie Lears
- What’s Wrong with Timmy? – By Maria Shriver
TACA’s website has some tips too (3.)
- Take time to answer your child’s questions: respectfully listen to and answer your child’s question about themselves and others. Do not ignore questions, change the subject, or sidestep or admonish the child for asking questions. These responses suggest that what a child is asking is bad. Answer all questions in a direct, matter-of-fact manner. Listen carefully to what your children want to know and what they are feeling. (And if you don’t know the answer, ask! TACA can help!)
- Work on creating a home environment that supports diversity: Make it a firm rule that a person’s diagnosis is never an acceptable reason for teasing or rejection. Immediately step in if you hear or see your child engage in such activities.
- Provide opportunities to interact: parents can actively seek out opportunities for their children to interact with children that have disabilities. Parents can arrange opportunities as school, day care or local parks for children to play together and interact. Ask your school or play group for times and schedules available to engage.
Here are steps to friendship once the opportunity is available:
- Begin by saying HI!
Encourage your child not to be afraid to say hello and smile. This is a great way to let someone know that you care and help them feel welcomed.
- Try, try and TRY again:
Sometimes it may take a few attempts to make a connection with a new friend because they may be able to hear you, or they may be intently focused on another activity. Try again if they miss the first time!
- Invite your friend over:
Often special needs children get overlooked for friendship activities that most children enjoy from parties to play dates. Invite friends over for play or that upcoming party. Think of ways to include all friends in upcoming special activities. Ask the parents what their child enjoys and do your best to incorporate activities that your new friends like.
- Don’t forget the golden rule: treat a person with a disability they way you would like to be treated and you’ll have a friend for life.
Opening your heart to new friends can make a huge difference for you and your community. It will teach your children lifelong lessons that many in this world have yet to learn. The population of special needs children is growing and the better we understand how to interact the more amazing friendships can be.
This article originally appeared on PARENTING September 2006. Updates are included in this article.