The Tenderness in the Autism Journey

So many blogs that gain popularity or a strong reader base are lighthearted, fun, teasingly profane -- in a word "perky". When considering how to approach autism from any perspective but heartbreak and devastation, the task is a slippery pig. We do have our profane in the autism experience, and on closer inspection the miracles that have presented themselves in our family's personal struggle do rise to the forefront. So in earnest, dear reader, enjoy this rare lighthearted passage through the gauntlet of autism, brought on just as the words "Your child has autism" have fallen upon your ears...

Beginning with Love. I can only conjecture that mothers the world over experience a new, deeper, more shattering level of love than they have ever known before, the day their baby is born. I had that experience. Then, there was the late afternoon in the doctor's office in Santa Monica when I first heard a qualified professional declare that my child had autism. The pain, the absolute destruction of my mind and soul in that moment caused the spontaneous unfolding of a love inside of me I could never have known to exist; layer upon layer of love opening, unfolding like the most delicate and fertile of lotus blossoms reacting to the morning sun. To behold my child was to behold the very genesis of love before my very eyes. For the first time I was aware that I would die for another human being. Pain opened up a portal to another dimension I had not known to exist before. I believe that dimension is supernatural, as my body had been unable prior to this devastation to hold anything like the amount of love I now had coursing through my being.

There was another experience. Among the many ways of treating autism we explored, there was homeopathy. We drove one day 500 miles to Palo Alto to see the country's pre-eminent homeopath in juvenile autism. As I sat in his office undergoing a 3 hour interview regarding Lila's traits, I wondered what some little white pellets could offer my daughter, who was already on a diet and medicine regimen through our DAN doctor. The homeopath concluded his evaluation by prescribing Ether to Lila as her remedy. The reason he gave was her apparent absence from this earth, her soul still flying in the stars, he said -- her incarnation not having taken a full hold in the terrestrial. Treating her ethereal nature with the same substance she was still clinging to in consciousness would theoretically bring her "down to earth" or back into her body. It was a nice theory, and one that didn't end up applying to Lila, who ended homeopathy sometime later.

So, this is where the story takes a cosmic turn. Where the scientific of mind and hard of heart may want to retire this account and come back for a more taciturn writing that challenges Big Pharma or IDEA, later on. This is your out.

There was a particular odyssey involved in Lila's early recovery. That voyage led to the inside of her guts, where an infestation of Candida (albicans) ruled the world with an iron fist. Lila's DAN doctor fought that battle with every anti-fungal prescription drug that could be had, plus draconian dietary restrictions. At first, the infestation seemed to resolve after 6 months of a constant onslaught, and rotation of anti-fungal drugs, administered to Lila's small body. Then, the bloat, dysentery-like diarrhea and constant pain returned. Tests showed that albicans had mutated into dubliniensis, a rarer form of yeast on the planet, mostly dedicated to tormenting HIV positive humans. Dubliniensis mocked Nystatin and scoffed at Diflucan. The fungus had delivered this undaunted spore-warrior mom a one-two punch.

With my daughter suffering every moment of her 3-year-old life with a gut disease that seemed invincible to treatment, I was fit to be tied for many months of trial and error that never yielded the death of dubliniensis. One night, after seeing the defeat of the anti-fungals come to its complete fruition, I went to the jade floor at my downtown Korean spa, and I sat. I sat down at 6:00 PM and I told the God of my understanding that I would not leave, would not budge, until the remedy, the answer to this affliction was delivered to my waiting consciousness. I told God that quite enough had gone on and that I would no longer allow this infestation to continue. At 10:00 PM the proprietress tapped me on the shoulder and said it was time to go, the place was closing. Reluctantly, and I must say with some resentment toward the cosmos, I got up and left with no answer having come.

On the way home I stopped at Whole Foods on Third and Fairfax for some basics. I had stopped at the supplement aisle to look for our cold-remedy and found myself drawn to a shelf for no apparent reason. I was looking at some liquid herbal remedies of different varieties when I heard a deep, sonorant voice with a thick Belizian accent near my ear. I saw a dark black hand reach past my ear and retrieve a box from the shelf.

"This is what you need", the voice said calmly.

I took the box from the woman's hand without glancing at it, as I was mesmerized by her face looking at me with such grace. Her white teeth shown in contrast to her very dark skin and part of me resisted her, waiting for the pitch, the scam to emerge.

"I know you don't know me" she said quietly, motioning to the check stand behind her, "But I was standing over there, and God told me to come over here and speak this to you."

I was aghast, and waited, listening.

"When I was a child, your daughter's age, I had the same problem in my belly" the woman stated, as matter-of-fact as you could say good morning to someone.

"This is the stuff that will heal her."

I looked down at the box. It held a liquid and a solid remedy inside of it that claimed to eliminate yeast from the gut. I was speechless. Something inside of me, a part that God knows all too well, was screaming that this was a hoax. I was looking for her angle at the same time I was floored by a miracle unfolding before my eyes.

The woman continued, tears welling in her eyes. I had still not spoken one word to her.

"Your daughter, she does see angels"

My heart dropped through the floor. Since the time Lila could speak she had reported every night before I turned out her light that angels were visiting her. We had made it a loving game between us. I would ask her what they looked like, what they were wearing, were they boys or girls and how many had come. Her answer was always the same.

"I see four angels there with her."

My mind knew exactly what this stranger would say next, my heart was bursting with a sweet terror, for after all, if God is this real, this physical, to come to me in the form of a human being and speak these words to me, then we are infinite creatures, we are in the midst of a divine miracle -- all of these struggling lives we lead.

"There is a male and three female" she stated. Your daughter, this child is very special. She will be well if you give her this medicine here."

The woman hugged me long, and sweetly. Her companion, a man her age who also appeared to be Belizian, and ambled up behind her, smiling. He seemed to know this scene. "We are going back to our home, to Belize", he said.

She turned from me and as she walked away with her arm around the neck of her male companion she said, "Don't you believe God was not talking to you this night."

I bought the remedy, and I administered it to Lila, with a high dose of pro-biotic given orally at breakfast and dinner. At the end of 8 weeks, Lila tested clear for candida altogether, her bloat went down, her stool returned to normal, and she could eat again without being in pain. So far, knock wood, four and a half years later with maintaining the probiotics at mealtimes, the candida has not returned.

So dear reader, make of these accounts what you will. And if you are the mother or father of a child with autism, know this: they can see an angel, they can see things we can never see. They can recover from autism, sometimes completely, sometimes partially, but your personal odyssey to help them will not return to you void. Whether they regain words, or maybe never speak again but gain some kind of physical comfort in a better functioning body, your struggle is worth their gain.

In this moment of finishing this passage I feel the bottomless well of love calling to me, that precious gift I got the day she was diagnosed. And I send that deep, deep love to each one reading this who is dying inside wondering how to help their child come back from the abyss of autism. Love is all around you, you are supported, you must never give up. Never.

Naysayers, the very ones who couldn't read this far, have no place in your universe. You go, you fight, until you are looking at a child who has been helped and even healed, by your efforts. No holds barred.

Amanda is making a feature documentary film about the civil rights crisis in autism, The Pilgrims, the Journey to a New Word for Autism narrated by Aidan Quinn. You can join the revolution in autism today. The film is sponsored by Iberia Airlines of Spain and the International Documentary Association, where parties can make tax exempt donations toward the production of the film.

Comments

[recordmom]

You do not hear from me (mom of a cured with ABA over a decade ago 16 year old autistic son) because my only child son is not yet aware that he was ever autistic. He is in an academically challenging private high school (all A's), plays piano and guitar extremely well and has a very active social life. At some point he will need to know since there is a hereditary component, but not now as an already angst-ridden teenager. I sympathize with Amanda and am glad she found something.

[Robin Horne-Aceves]

In response to Du grad I can tell you that pediatric gastroenterologists do not listen and one even told my friend that she was feeding her son too many carbs(which was not true) and that he was'nt going to run anymore tests unless she really wanted him too. This was a very prominant doctor in the bay area and is one of the typical that does not LISTEN!!! She took her son to a DAN doctor who ran tests to see that this kid had major food allergies. Many children with Autism have major immune system issues including Candida which is absolutly horrible and it does exist! We are not desperate pathetic people some of us just want our kids to feel better so they can do better. if you have'nt been there for the non stop tummy ache and poop issue's you don't understand and by the way, Amanda I would love to know what you bought at Whole foods.

[dugmaze]

"if you have'nt been there for the non stop tummy ache and poop issue's you don't understand"
It's hard for people to understand what we have to go through. And then they call us names. Funny part is my 7 year old autistic son has better manners.

This might help for you if you need it.
Although this is the first week on this new probiotic drink, my son has been pooping almost daily. We're giving him 1 bottle(3.1oz) of Dannon DanActive Immunity daily. They come in a small yellow 8-pack. We started Sunday and he pooped both Tuesday and Wednesday. We have never had this much luck with anything! We've stopped all supplements and heavy dieting except vitamins to try to find some "baseline". So we don't give anything besides the DanActive.

Hope it helps and may peace be with your family,
Doug.

[helen]

I am not in a position to judge or make an assessment of the "rightness" of what you experienced. I can only say that as a parent with an ill child, I would be out of my mind if there were no treatment available, and open to just about anything.

So I sympathize with you. But I also caution you. Desperation does not always bring relief. It is important to use that wonderful mind we have been given to process our feelings and our thoughts, in order to come to the best decision possible for taking care of our responsibilities, our family, and ourselves.

Be skeptical of "cures" and be open to new ideas. That's my best advice.

Or as Reagan liked to say about the Soviets, "Trust and verify."

[du grad]

I am a medical technologist in microbiology. Competent medical laboratories (used by medical doctors) do not identify yeasts in stools as they are part of the normal flora. They only look for reportable enteric pathogens (Salmonella, Campylobacter, Shigella, Yersinia). When you "treat" normal flora that wasn't causing a problem in the first place, overgrowth of other organisms can occur. Why did this parent not take her child to a pediatric gastroenterologist?? It is very sad that desperate people rely on clerks at the local health food store instead of trained professionals. When I see people being "treated" for yeasts (that exist around us all the time and usually only cause problems with severely immunocompromised patients (cancer, HIV, transplant, etc.) I just cringe.

[Amanda Copeland - Huffpost Blogger]

It is clear from your post that you are not a parent, Du Grad. It is clear from your post that you have been brainwashed, like the majority of the medical establishment, that it is ok to dismiss out of hand a whole population whose "natural flora" has gone rogue and taken over their entire intestinal tract.

And, you assume out of hand that I was not dealing with a gastroenterologist. In fact, I dealt with 5 of them, to be exact. 4 were brainwashed, like yourself, and one understood the territory inside the body of a child with autism.

Her stool tests were run out of the the medical center at UCLA, so you are wrong that "medically responsible' establishments won't test stool for candida.

Please see the work and research of Dr. Tim Buie out of Boston and Dr. Arthur Krigsman out of NY and Austin and please do your research before you try to go up against any autism parent who knows more than you any day regarding the matters of medical complications relating to their autistic child.

I hope you will indulge the incredulous tone of my post, after listening to battalions of doctors who know nothing about autism tell me that there is nothing I can do for my child, and tell me that my friends whose children have been destroyed by vaccines are simply experiencing a developmental "coincidence" I've frankly heard enough.

Do your research before you speak on autism, or don't speak.

[euthman]

There must be something about the level of desperation experienced by parents of autistic children that can drive even an intelligent individual to risible levels of credulity. Remember when "facilitated communication" was the rage? The "facilitator" would hold the child's hand over a keyboard and make the child punch the keys to type a message that the facilitator claimed was from the child. And the parents bought it!

The best of us can be led to the depths of folly by the bright lantern of hope. If I had to face the same challenges experienced by these parents, I might go the same way. Desperation makes us take leave of our senses, which is why, my libertarian leanings notwithstanding, I favor vigorous, evidence-based government control over health care.

[kwombles]

Not all parents of autistic children become desperate. Not all parents of autistic children go down the woo trail. Apparently those who are desperate and do go down the woo trail are inherently louder and of more interest and therefore attract more media attention. You'd be surprised just how many of us parents manage to cope effectively and positively with the challenges our children face.

[euthman]

Yes, I know there are many such parents. I know some personally. I just wish we could hear more from them on these discussion boards. The wave of irrational certitude here is often overwhelming and discouraging. Even with the Republicans out of power, the Counter-Enlightenment and its War on Reason surges on. I do apologize for smearing paint on you and other rational thinkers with my too-broad brush.

[Amanda Copeland - Huffpost Blogger]

rigorous government control over anything = death