Walking the Autism Tight Rope

After a conversation with a friend at the gym this week, I realized that all my “AUTISM AWARE” posts (summarized below) I have been making lately on my facebook page (in honor of Autism Awareness Month of April) may have led people who aren’t close friends or aren’t friends we see often, to assume my daughter, Lady A, is Autistic.
Quite the contrary, Lady A, does not currently have an autism diagnosis or a PDD-NOS or an Asperger’s diagnosis. So why (I am sure many of you are thinking) do I care, or post, or write about AUTISM, as if I were the caregiver of an Autistic Child, even though I am not?


Because from very early on in this journey of trying to figure out why Lady A was so irritable, and colicky and fussy as a newborn, many a doctor, beginning around the 15 month age, began bringing up the A-word. “Maybe it is Autism” they would say, and then Lady A would make eye contact with them and they would dismiss it, saying, “No, she just looked me in the eye, it can’t be Autism” (as if lack of eye contact is the only SYMPTOM of an Autistic child). Others would say, “Maybe it is Autism” and then realize she was only a hair over a year old and quickly rebut, “Oh, but she is too young to tell, we will just have to wait a while to see, because you can’t tell this early.”(as if children “grow” into Autism and there are no other signs or symptoms) In those early days, I am embarrassed to say I knew VERY little about what Autism was. I had a couple of friends with Autistic Children, but did not know much beyond the label and what they shared with me about their experience.


Because on certain of her “bad” days, at certain times of day, in certain situations, our daughter can exhibit “autistic like” behaviour including: temper tantrums, flapping arms, blank stares,  head banging,  shrill screaming, repetitive speech, nonsense words and speech, fleeing, etc.  It was not until I began researching metabolic disorders, and specifically mitochondrial disease, around when she was 19months old (when it was first suspected by the first neurologist we saw), that I realized WHY some doctors suggested it and WHY we were seeing some of the behaviours we were seeing.  While at 3 years old, she does not have an autism diagnosis, she is suspected of having a metabolic disorder called mitochondrial disease, in which there is an ever growing relationship and body of research showing the association of Mito (OXPHOS) as an underlying cause of AUTISM or “autistic like symptoms”.

Does she have AUTISM today? NO, not diagnosed by a professional. BUT- Do we walk a fine line, a tight rope of sorts, every single day, teetering on the edge of this great abyss: YES.  We have been here many times before, where we fell, as she regresses and we struggled to figure out where her babbling or words went. Or when we fell and she screamed in pain with chronic burning diarrhea.  Or when we fell and she banged her head on the tile floor (all while we tried to restrain her flailing, tantruming little body) for a week after drinking cows milk.  We have fallen and thankfully along with Lady A, gotten back on this tight rope and continued our journey.  But each day we navigate a series of obstacles high above the ground, teetering on that little rope: obstacles in the form of food, to errands we run (dry cleaner), to household chemicals, to staying outside and playing too long in the heat, to not eating soon enough, to not eating enough, to all the other variables and stressors on her body on a daily basis, MANY that are out of our control. So we navigate the obstacles we can and let the ones we can’t control up to lots of hope and prayer.  There is not really a day that goes by that “regression” does not loom somewhere in our thoughts. The further we get from the last episode or reaction or regression, it seems easier to think that fear is gone… but it is not, it is still there, looming. If this is mito that she is dealing with, I have read enough stories and heard enough case studies to know that fear may never be gone, that sensitivity may always be there, it is just our hope that we can lessen it somehow, so that the obstacles are not as harmful when she encounters them as she continues to walk this tight rope we call life.

What I have learned about AUTISM-

The more I researched and the more I read to educate myself on Autism, the more I realized that as it stands now, Autism is regarded by the large majority of the medical community as a “psychiatric” disorder. It is diagnosed by observing a child and observing behaviors or actions of a child and comparing them to a criteria (which is listed in the DSM IV).  What I know NOW after traveling the path we have, is that AUTISM IS NOT just a PSYCHIATRIC DISORDER but ALSO a NEUROLOGIC, BIOCHEMICAL, METABOLIC, GASTROINTESTINAL, INFLAMMATORY, IMMUNOLOGICAL, TOXICOLOGICAL AND EPIGENETIC DISORDER, as well. And that, my friends, is something that is not being recognized nearly OFTEN enough or SOON enough, especially by those who are giving parents that diagnosis.

So WHY do I write about Autism, because there is so much that I DIDN’T KNOW before I started this journey…and so much I wished I would have known.  I write in hopes that it will spare ONE OTHER PARENT the pain, agony, frustration, and feeling of sheer helplessness, as they try to figure out why their baby is SCREAMING unconsolably, while everyone around them is telling them it is NORMAL and everything will be FINE, and it is JUST a STAGE that they will OUTGROW. BUT NOW I know… there can be MUCH MORE TO IT, than that.

I will leave you with my Month worth of FACEBOOK posts for Autism Awareness Month- there is much more to be AWARE of than the fact that this disorder exists.


AUTISM AWARE Facebook posts (April 2012)

World AUTISM Awareness Day and April is AUTISM awareness month… for the next few weeks I will be posting a story, video or blog post in an attempt to educate and spread awareness about this EPIDEMIC affecting our children… even if your child is healthy and neurotypical, I hope that you will take a moment to learn, share and take action.

AUTISM AWARE: Harvard Pediatric Neurologist Dr. Herbert speaks about DIET AND TOXINS and how AUTISM should be treated as it can be REVERSED! RARE GENETIC factors are hardly ever a factor…but these kids are SICK. http://youtu.be/lOYdpxpFX08

AUTISM AWARE: The “new” statistics are out: 1 in 88 children (using data from children born in 2000) has AUTISM, for boys it is 1 in 54. Do you know a child with autism?
If you don’t, you will… because at these rates: In 5 years, autism could affect 1 in 50 children or 1 in 31 boys. There will be at least one child with autism in every classroom in America.
It is MORE than a psychiatric disorder, it is NOT bad parenting, it is not “unruley kids”, it IS a MEDICAL CONDITION with BIOLOGICAL DYSFUNCTION- educate yourself, educate a friend, be a friend to a mom who may be struggling!
Here is just one possible cause of AUTISM- underlying mitochondrial disease:

AUTISM AWARE: Here is a press conference given yesterday by grass-root parent led autism organizations. It is a long one…but some highlights:7:00 Flaws in CDC numbers, 15:00 A parent’s story (Katie Wright), 19:40 Donald Trump quote,20:45 Vacccines and Autism, 33:10 Detoxification and Mitochondrial Disease, 36:10 Hepatitis B Vaccines, 38:14 Developmental Regressions, 43:20 Advice to pregnant women http://www.ustream.tv/recorded/21549838

AUTISM AWARE: A Blog by a MOM that DOES NOT have any Autistic Children … but who is surrounded by friends that do, read what her friends are saying on facebook…
Thank you, warrior mom,BS,  for suggesting this blog to me. http://gianelloni.wordpress.com/2012/04/04/the-autism-epidemic-seen-through-a-day-in-the-life-of-my-facebook-newsfeed/

AUTISM AWARE: Autism and the Church~ If you attend a place of worship, do they have special needs ministry? If so please comment with your church’s name below.
HAPPY EASTER ! http://thinkingmomsrevolution.com/autism-and-the-church/

AUTISM AWARE: Cerebral Folate Deficiency (a TREATABLE condition very common with kids with Autism and Mitochondrial Disease) -Learn more on the Mitoaction Conference Call  To read a summary of what will be discussd on the Tuesday, April 10th teleconference, visit the link below: http://www.mitoaction.org/autism/february-2012-teleconference

AUTISM AWARE: Are your kiddos on the “spectrum”? Allergies, Asthma, Anxiety,ear infections, OCD… the list goes on… the more I leard, I realize the “spectrum” is broader than I ever thought-  http://thinkingmomsrevolution.com/autism-awareness-infrared-style/

AUTISM AWARE: Could Tylenol be one of the causes of Autism?



AUTISM AWARE: Autism Medical Symptoms:

AUTISM AWARE: One Family’s journey to recovery…. http://youtu.be/QsVNYMG5bWs

AUTISM AWARE: a friend passed this one along, thanks AB,
Isolation is an issue for many parents of unique kiddos!


AUTISM AWARE: WHAT NOT TO SAY TO AUTISM PARENTS- http://www.autism-island.com/2012/03/50-things-you-should-not-say-to-autism.html and

WHAT TO SAY: http://www.autism-island.com/2012/04/50-things-you-should-say-to-autism.html?spref=bl

AUTISM AWARE: The first time that the A-word was brought up was after I described our daughter’s reaction (15 months old ) to drinking cow’s milk for the first time: banging her head on the floor, screaming in pain, and flailing to a doctor. The doctor said, “Hmmm, that’s odd, it can’t be the milk, maybe it is Autism? She is too young to tell, so we will have to wait for a while to see if that is what it is.”
Oh what a journey it has been since then…
There are some words and conversations you just never forget…

AUTISM AWARE: Is Autism Genetic or Environmental?? http://video.foxbusiness.com/v/1542702783001/

AUTISM AWARE: HOW IS Autism Diagnosed… this article describes the observation, question/answer, behavioral many hour long subjective process… NO MEDICAL TESTS are done as part of an AUTISM diagnosis, yet so much can be going on at the cellular level of Autistic children… this article is a step in the right direction ONLY IF medical testing: including genetic, metabolic, mitochondrial, and nutritional testing are done along side a psychological assessment. http://news.harvard.edu/gazette/story/2012/04/detecting-autism-in-matter-of-minutes/

AUTISM AWARE: Dr. Q (http://www.clinic4kids.com/ ) answered the question last night “What do you think causes Autism?” from his perspective as a pediatrician: BRAIN (nerve inflammation or destruction), GUT (malabsorption and poor nutrition), IMMUNE (lack of Defense), DETOX (inability to remove waste), GENETICS (susceptibility), and EPIGENETICS (outside influences)…..

AUTISM AWARE: Autism in other countries… France…. this post makes me so sad, mad and frustrated all at the same time… what do you think? http://thinkingmomsrevolution.com/the-forgotten-children/ 

AUTISM AWARE: Whether or not you think vaccines have anything to do with autism or not, this article is a MUST READ for any parent on the POLITICS and INFORMED CONSENT of the vaccine industry, so that you can make the very personal and individualized INFORMED decision of vaccinating your children. I am embarrassed to say, that prior to my daughter being born, I was SO UNINFORMED.

About Empowered Advocacy

www.EmpoweredAdvocacy.com Pediatric Patient Advocate
This entry was posted in Allergies, Autism, Household chemicals, Medical, Mitochondrial Disease, Toxins and tagged , . Bookmark the permalink.

7 Responses to Walking the Autism Tight Rope

  1. elizabethkbaker says:

    Awesome post Kristi! Thank you for being such a great advocate for our kids!

  2. tguidry says:

    My daughter, who also has mito, was the exact same way! She screamed and cried all the time and everyone (including her pediatrician) kept telling us it was colic and she’d outgrow it! Oh how I wish that were true!! Now, at least we do have more good days and sleepy nights. We went almost two years without one of those!

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  5. Patti says:

    Wonderful post Kristi – you write so well.

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