A Dispatch From The Autism Wars: You Don't Have To Be Wrong For Me To Be Right (Part 1)

Recently I read a blog post on Wellsphere entitled, "I am not an Autism Mom". Michelle, the article's author, takes issue with parents referring to themselves as Autism Moms. This, she says, takes the focus off the person with Autism and puts it on the mother. Unless the mother has Autism herself it becomes a title: " Autism Mom. Two words put together to create a phrase, a title – and that’s what it is - that I really don’t like." I can't help to feel the sting of judgement - I mean, have you seen the title of my blog? Even so, I am grateful to Michelle for her post because it prompted some soul searching on my part into the complexity that underlies the title, "Autism Mom".

It feels strange to hear someone say Autism has nothing to do with me. Raising a special needs child, I think, can be all-consuming. Maybe there are moms out there who can be routinely beat on by their Autistic child and think, "none of this is about me, only about the child", but not me.

We are caregivers to persons with significant developmental disabilities. And, there have been volumes written about the necessity for caregivers to take care of themselves, so that they don't get burned out. To imply focus should never be on the parent regarding Autism, I just don't see it. My life and Autism are enmeshed. Though I don't have Autism, I live and breath it nevertheless. I am an Autism Mom.

It is only a problem, then, if it becomes only or mostly about the mom. That does not happen with me, but I must be vigilant because emotions can be tricky. At times this job requires me to draw on tremendous reserves of strength. Those reserves must be in place when I need to call upon them. This is why I have a blog: it is about me here so it doesn't become so at home. Here I can dream, scheme, imagine, vent, plan and, at the end of the day my son is the better for it, because his mom is too. I am then able to put my stuff aside and be present for him, no matter what.

Helping my son live his highest potential requires that I be an emotionally healthy person. And, I think it is quite healthy to carve out little spaces where it is about me. Another of those spaces is my identity as an Autism Mom. With that said, I fully support anyone who eschews that moniker in favor of another, or none at all, for that matter. I think we should each choose whichever processes, interpretations, values, communities, and treatments help us be the best mothers to our children - and give each other room to do the same. Simply put, our needs are not necessarily the same, nor should they be.

The name Autism Mom reflects a culture and network of mutual support built by parents, across decades, to help their Autistic children thrive. Autism Mom does not always translate into unified beliefs about the origin of Autism and whether or not that condition should be cured, or even treated. In fact, disagreements between the two camps within Autism Moms can get downright ugly. For instance, Neurodiversity Moms believe Autism is a normal genetic variant, so the children should be respected as they are, without curing their condition. Biomedical Autism Moms, on the other hand, say their children have been injured and do everything possible to restore them to health, with curing Autism as a top priority. Each side feels judged by the other. For example, ND moms say the best way to love the children is to respect them for who they are, while Biomedical Moms question why anyone who loves their child wouldn't seek a cure, which they see as offering the best chance for an independent life. Can we quit this? We all love our children, already!

Though I identify mainly with the Biomedical Moms, I do appreciate some points ND Moms make. They remind us that our children are who they are and and that we must not send the message that they are broken people in need of fixing. Having grown up with two undiagnosed neuro-developmental conditions myself, ADHD and Sensory Processing Disorder, I appreciate the concerns about basic respect. Whether or not adults intended this, the message sent was clear: I should be some way other than how I was. Even when this is not explicitly stated, the children know. They just do. At the same time, I would have welcomed any intervention, biomedical or educational, that could have lifted me out of the most limiting aspects of those conditions - and I still do. Why should I want any less for my son?

I've often wondered on the dynamics that influence whether one ultimately becomes a Biomedical Mom or a Neurodiversity Mom. When you hear the two sides argue about what Autism is and is not you'd assume causation must be the same for every child, or why else would the charge "you just don't get it" be so often bandied between them. Yet, science finds there is no single cause , that there are likely many Autisms, and that only 15% of cases are attributable to straight genetic causes. Could what we are not getting, then, simply be each other's story?

Each family has its own unique story about how Autism found them. Some had children who seemed to be different from birth, while others had a period of normal development only to lose it all. While some children with Autism are high functioning and healthy, others suffer medical illnesses such as immune dysfunction, seizure disorders, and gastrointestinal abnormalities. Clearly each case is unique. Even among regressive cohorts the age of onset can vary.

Each of our impressions of what Autism is will be colored by our own experience of it. Generally speaking, Biomedical Autism Moms have the children who had periods of normal development and regressed, reportedly after a vaccine, and came to develop comorbid health problems. Of course these mothers would want to do whatever possible to heal the bodies of their formerly healthy children. I have noticed, at least in my interactions with ND's, that the majority, but not necessarily all of their children are among those labeled high functioning and without the debilitating health issues. Could ND Moms come to their conclusions about Autism, in part, because their children, generally speaking, have different forms of that condition from the biomedical kids? Now, I'm not saying there are no Biomedical Moms with children who showed Autistic traits from birth, nor am I saying no ND Moms have severely Autistic children - I simply refer to patterns within the majority.

Why are we so unwilling to consider the stories of others when those opinions on Autism differ from our own? Have our own experiences and reading only information that backs up our pre-conceived ideas so convinced us that there is nothing new to learn? Instead, why don't we take a page from the scientists and humbly acknowledge that there are many Autisms. If we refuse to honor that another's perspective of Autism may be different from our own, we risk not having merely opinions, but a rigid ideology.

All parents of Autistic children, no matter on what side of this divide they may find themselves, want one thing in common: a world that accepts and appreciates the diversity our children add to it. Tolerance of diversity, though, not only refers to like things race, religion, ethnicity, ability or disability. There is also the tolerance of diversity in thought and opinions.

Should we expect a mother, whose child was talking and interacting only to slip into permanent isolation to not believe something has gone horribly, horribly wrong? And, should we be all that surprised when another mother, whose child showed Autistic traits since birth, thinks her boy is perfect as is and does not want him cured? To borrow a saying much loved by many who hail from liberal religious traditions: "You don't have to be wrong for me to be right."

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I HATE Seizures!!!!!!!!!

The week started out well enough. Our son had his first Neurofeedback session for the treatment of Epilepsy. To say he loved it would be an understatement, as it was love at first sight with the practitioner. Ever wanting to impress, he did whatever she asked, resulting in a successful first treatment session whereby he reduced those pesky Theta Waves by 1.5. This is a common reaction from my son towards women, as he believes exist they for him alone. I know - I should be mortified by now, but he comes by this conclusion honestly, I suppose. After all, since the age of three he's had therapists, mostly women, either coming to the house or working with him in treatment centers. Wanting to encourage speech, they hang on every word he says and fuss over every little thing he does. So yeah, my son believes he is the world to all women and is always thrilled to have a new one in his life.

As the week wore on constipation set in. It is quite common for people with Autism to suffer GI distress. I only just learned tonight, though, that constipation in a person with seizures can make their medication stop working. We kept wondering all week at the evident seizure activity. And, my son tried to express his need for help by putting his teacher's hands on his head and saying, "Go to the lady's office" (that's what he calls the Neurofeedback lady).

Today the seizures reached a dangerous tipping point when he unbuckled his seat belt and lunged into the front seat. In a state of sheer panic I stopped the car, buckled his seat belt, and turned around to head back home. Fortunately, we were close.

The blood curdling, howling screams of pain are something I will never get used to, especially when the question "What hurts?" is answered only with more screams, or silence.

As we turned into the driveway he undid his seat belt again, opened the door, and lunged out before the car came to a stop. There's never time to panic. That comes later, at say, 2:00 a.m., when the adrenaline that was never quite put to bed, screams "Crisis, crisis. Go check! Go check!" So I do check. What I find is a child peacefully asleep. Yet the panic continues, because it can.

Gently, I lifted my baby from the ground, carried him to the house whispering, "you are having seizures baby. Its going to be okay. You are having seizures. Its going to be okay."

Once inside, with shaking hands, I didn't know what to do first: get medication into him or call the Neurologist. After giving him the medication I got through to a lovely Neurologist on call at Children's Hospital who told me to administer that most unpleasant of interventions to which parents resort short of admitting a child for hospitalization. "How?", I thought "I can't take this kid in a car again". Shortly thereafter the medication kicked in and we have been seizure free for two hours. Nevertheless, this child is not sleeping in a room alone tonight.

Given his GI problems my son has developed a fear of the bathroom. Yes, this has become a problem in more ways than you can imagine - like when he will not get in the tub because walking past the toilet is too traumatic. I just found him cleaning pee of the floor with a towel while singing, "what's so amazing that keeps us star gazing, I guess its something that I'm supposed to be........".

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"Who said that every wish would be heard and answered when wished on the morning star?Somebody thought of that and someone believed it. Look what it's done so far. What's so amazing that keeps us star gazing and what do we think we might see? Someday we'll find it, the rainbow connection, the lovers, the dreamers, and me."
---from the song, Rainbow Connection (my son's favorite)

British Medical Journal Study on Retroactive Intention / Prayer: What Might This Mean To Our Autistic Children?

The Christmas 2001 issue of The British Medical Journal published a study whose conclusion stunned many, including it's author. Entitled "Effects of Remote, Retroactive Intercessory Prayer on Outcomes in Patients With Bloodstream Infection: Randomized Control Trial", this study showed that prayer said 4-10 years after infection was associated with a shorter hospital stay and shorter length of fever. Leonard Leibovici, the author, was no frontier quantum physicist validating the Zero Point Field. Rather, according to Lynne McTaggart, author of "The Intention Experiment", he was an Israeli Professor of Internal Medicine, who wanted to prove that the scientific method could not explain something as subjective as prayer. Imagine the doctor's surprise, then, when his own carefully controlled, meticulous study found otherwise.

The study consisted of 3393 patients whom were hospitalized for blood stream infection between 1990 and 1996. In July 2000 the patients were randomized into two separate groups. One group received retroactive, intercessory prayer said by the same petitioner and the other was a control group. While the mortality rates among each group were roughly equivalent, there was a stark difference between the groups for length of hospital stay and duration of fever. Based on these data the study concludes such intervention should be considered for use in clinical practice for treating blood infections.

How in the world, I wondered, could intention or prayer said years after people were ill have an impact on their clinical outcomes in the past? I don't know, but my mind goes to to Einstein's belief that "the distinction between past, present, and future is only a stubbornly persistent illusion." Perhaps there is something to the belief held by many Quantum Physicists and depicted in many a science fiction story line: that past, present, and future actually occur at the same time and thus have the ability to influence one another?

It may be said, "well, this is just one study", but is it? From Dr. Dossey's website:

1. "In 1998, Dr. Elisabeth Targ and her colleagues at California Pacific Medical
   Center in San Francisco, conducted a controlled, double-blind study of the
   effects of "distant healing," or prayer, on patients with advanced AIDS. Those
   patients receiving prayer survived in greater numbers, got sick less often, and
   recovered faster than those not receiving prayer. Prayer, in this study, looked
   like a medical breakthrough".


2. And: " In 1988, Dr. Randolph Byrd conducted a similar study at San Francisco General Hospital involving patients with heart attack or severe chest pain. He found that patients receiving prayer did much better clinically than those who did not. "


3. Additionally: "Currently, Dr. Mitchell Krucoff at Duke University Medical Center in Durham, North Carolina, is studying the effects of prayer on patients undergoing cardiac procedures such as catheterization and angioplasty. Patients receiving prayer have up to 100% fewer side effects from these procedures than people not prayed for. "

Dr. Dossey adds, "These are impressive double-blind studies, meaning that no one knows who is receiving prayer and who isn't. This eliminates or at least reduces the placebo effect, which is the power of suggestion or positive thinking. However, the studies I find most impressive are not done on humans. For example, when bacteria are prayed for, they tend to grow faster; when seeds are prayed for, they tend to germinate quicker; when wounded mice are prayed for, they tend to heal faster. I like these studies because they can be done with great precision, and they eliminate all effects of suggestion and positive thinking, since we can be sure the effects aren't due to the placebo effect. Mice, seeds, and microbes presumably don't think positively!"

Add to these the Maharishi Effect, about which has been written in dozens of journals, including The Yale Journal of Conflict Resolution. In this particular case, groups of meditators in Jerusalem held the intention of peace and violent activity in that region decreased. Similar results have born out in a study located in Washington D.C. and other locations.

What might all this mean to the health and
well being of our Autistic children?

This brings me to the question: what might all this
mean to the health and well-being of our Autistic children? On this point it is the retroactive prayers study by which I am
captivated. Many, but not all, parents of children diagnosed
with Autism can recall exactly when our children began to lose already acquired skills. While some children developed differently from birth, others had periods of typical development that eventually fell away. Could retro-active prayers of health and well being to a child's infancy lead to positive health outcomes in the present or future?

My son was a physically strong newborn who rolled
over at three weeks. From day one, bent on holding up his own head to look around, he routinely moved it away from the hands of whomever was holding him. He was also a very attached infant, not at all as infants Autistic from birth are described. In fact, he would not nap unless I was curled up next to him on the couch. Three times a day I did that, all the while thinking, "I'm never going to get another thing
done am I." By six month of age he napped alone just fine - he also wouldn't have noticed if I never came home again. I wonder then, could retro-active prayers for optimal
GI and immunological function, for an ideal developing nervous system lead to a healthy, Epilepsy free individual in the present or future? I'd certainly like to find out!

The Intention Experiment is a community of tens of thousands of people that are participating in the largest mind over matter scientific experiments in history, under the direction of scientists from Arizona State University, Princeton, University of California Irvine and various other institutions. They are always considering ideas for the next Intention Experiment. If you would like to see Autistic children considered for an Intention Experiment stop by their website and give them your thoughts.

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“What lies behind us and what lies before us are tiny matters compared to what lies within us."

Ralph Waldo Emerson

I See Mary in a Garden

Often one's first impression, upon visiting our home, is that we must be Catholic. Though we are not, the assumption doesn't surprise me. Seriously, whom but a Catholic would have so many images of Mary about her living room? There's the large portrait of Mary praying in a garden. Then there's the small, off-white statue of a veiled Mary on the bookcase and an exquisitely framed image of Madonna and child on the Moroccan style wine storage table. For over a year I found myself collecting any Mary items that moved me, with no clear understanding as to why. After all, I am not Catholic, as is typically someone this passionate about her "Mary" collection. Then it hit me: when this happens it usually means I'm under the spell of an archetype.

Any religious text, mythology, historical tale, or novel contains variations on themes that have been re-played over and over across human history. Though names, places, faces, times, intensity and other details may vary, the basic themes are timeless.

While reading I like to relate these to motifs I've encountered in my own life. Whether the story is literally true matters not because the message always is. This practice has infused the interpretation of my life's events, even the uncomfortable, with a sense of meaning and mystery. This is due, in no small part, to such motifs reminding me that, though it may feel otherwise at the time, I'm never the first or only person to have any experience. For instance, when I was terrified of childbirth I thought of the tens of billions of women who had given birth before me. I identified with their collective bravery and became brave myself.

Then there is Mary. What is more tragic and joyous than to watch your beloved son be tortured to death before your very eyes only to witness him ultimately risen to a glorious new life?

Earlier this year, while pondering one of my Mary images, I understood that on a metaphoric level I'd come to identify with her as a mother. Relationally, my seven year old son was slipping away. He was in constant pain due to an undiagnosed 24/7 Petite Mal seizure disorder and his aggression was constant. Nobody had any answers for us and there was no reason to believe this would change. His seizure cycle was constant. As a result, one minute he'd be dragging me across the floor by my hair, the next hugging me - until another seizure had him reaching again for hair to pull or arms to bite.

During these bouts, my eyes would often focus on Mary and somehow this gave me strength. Now, I'm not implying that seeing my child deteriorate in this way, as devastating as it was, is the same as Mary at the foot of that Cross, helplessly watching her son slowly die an excruciatingly painful death. Yet, is there a more helpless feeling than watching one's child suffer while being unable to stop it? It is a personal hell into which every parent descends at one time or another.

I found those images of Mary centering because she and her beloved son had been to the depths of despair and triumphed. Ever since childhood I've had this way of imaginatively entering into objects, ideas, or images and experiencing them from the inside out. While this happens on a non-verbal level, I come out of the experience somehow changed. Likewise, in connecting with those Mary images I shifted from deep despair to the understanding that beyond a shadow of a doubt my son would triumph over his suffering too. There was no rational reason for this belief. After all, the doctors had told us that this was "just the Autism" and we'd have to learn to live with it. And yet, I knew that answers would come if we but fine tuned our awareness to recognize them.

Things did, indeed, work out. It was revealed that our son suffered from an undiagnosed seizure condition, possibly since infancy. Now that optimal medication levels have been achieved his development, which had stalled for years, has taken off. He continues to amaze us each day.

I've long suspected that my son has the ability to pluck thoughts right out of my head. Never have I been more convinced of this than this past weekend. I often write blog entries in my mind as I move through the day. While I thought of this title over and over, I mentioned it to nobody. So, imagine my surprise when my boy walks up to me, leans his elbows on my knees and says with a big smile, "See Mary in a Garden?" With tear-filled gleaming eyes, I returned his grin and said, "Yes I do."

My son, too, is resurrected.

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"I see Mary in a garden, in a garden with of a thousand sighs. There's holy pictures of our children dancin' in a sky filled with light."

--Bruce Springsteen, from The Rising

"The latest incarnation of Oedipus, the continued romance of the Beauty and the Beast, stands this afternoon on the corner of 42nd Street and Fifth Avenue waiting for the traffic light to change."

--Joseph Campbell

On the Trail of this Medical Mystery: Does He Have Autism or a Seizure Condition that Mimics Autism?

When DS was an infant, for much of each day, he was an entirely neurotypical child. He would look us in the eye, laugh, enjoy anticipatory peek-a-boo games, and all the other forms of social interaction so central to a baby's daily experience. This would go on for hours and then, suddenly, as if someone flipped a switch in his brain, DS would drift into his own world, completely unaware of anyone else in the room. I would try to bring him back by making the same motions or sounds he'd enjoyed just a moment before, but nothing worked. He'd be unreachable, sometimes for minutes, sometimes for hours. Then, as suddenly as he slipped away, he'd return in an instant, as if someone had flipped the switch in his brain back on.

This baffled me, even at the time. DS being my only child, I had nothing to compare this puzzling behavior. So, I just assumed this was part of his personality and enjoyed my baby. Time wore on and DS said his first word at nine months: the cat's name. Since his motor and speech development fell on the late end of normal, there were no red flags to concern the pediatricians. And so, it never occurred to me to mention this peculiar "light switch" activity.

Being DS's stay-at-home mom I was exposed to these in and out patterns of awareness over longer swatches of time than anyone else. My sister, who has worked with Autistic children as a Behavior Specialist, asks me if I thought DS had signs of Autism when we visited Pennsylvania for his first Christmas at 8 months old. She saw nothing during our stay to indicated that he was anything other than a typically developing baby. And, at least during that visit, I would have to agree. However, looking back I see that this "light switch" activity was present as early as six months of age. There was simply no rhyme or reason to if or when he would tune out during a particular time frame. At Christmas he just happened to be more consistently with us.




As I mentioned, there was no delay in when DS started speaking. However, his language acquisition progress stalled at about 2 and 1/2 years of age. While other Autistic children getting the amounts of therapies DS received got better, he continued in many ways to regress. He went from being high functioning at three, to moderate by four, to severely Autistic by seven, then back to moderate upon being treated for a recently discovered seizure disorder.

It is bizarre because none of the many other Autistic children I know were regressing at such a late age this way. Also recognizing this as atypical, DS's neurologist ordered extensive genetic testing. I was shocked to learn that DS had not one of the hundreds of genes that have been implicated in Autism. Though DS clearly has traits of moderate Autism, there is no clear reason as to why.

There is also the question of DS's Autism being atypical. While it is not uncommon for Autistics to have an atypical presentation, it is often those on the higher functioning end of the spectrum whom manifest this way. Yet, here is DS, whom is minimally verbal, flaps his arms when excited, and routinely makes verbal sounds and yet looks people directly eyes, and is very aware of and interested in others. The most surprising of all is that DS appears to have Theory of Mind. For those not familiar with the term, Theory of Mind is the ability to understand, internalize, and interpret the basic thoughts and concerns of others. It is reported that this is something with which even high functioning Autistics struggle. I'll never forget when one day my son, excited that his cousin came over, said: "want Erin to play the Wii." Now, my son can care less about the Wii. In fact, my husband and I have to beg him to play it with us. And yet, he asked his cousin to play the Wii, not because he gives a flip about that game, but because he knows other children seem to love it. Then, when he took his turns DS looked back to make sure his cousin was watching. Amazing!

Recently I read an article on the discovery of an LGl1 gene mutation. This mutation, which occurs in infancy or early childhood, triggers seizure disorders. The Autism Speaks press release regarding this research reports that this condition may be fairly common in those diagnosed with Autism. My mind immediately went back across the sequence of how my son's condition set in: the "light switch" as a baby that sent him from our world into his own and back again, the flattening of his language skills, the continual regressions during middle childhood that eventually stabilized once his seizures were diagnosed and treated, the absence of any of the hundreds of genes involved in Autism, even though DS presents with symptoms of moderate Autism - albeit atypically. Could this be an answer to this perpetual medical mystery that my family has endured for seven years? If so, how can we treat it? I've already been in communication with the research team at Harvard in attempt to find answers. In the meantime, I wanted to write this blog as an awareness piece. Perhaps there are other families out there whose children have presented with this baffling constellation of syndromes and symptoms for which doctors have provided few answers.

New Companion Blog

I just set up a new companion blog called Satellite Cognition (aka ADHD). I'd guess many of us who blog plan our next entries in our heads as we move about our day. Even though my blog is Autism themed, I also keep finding myself writing ADHD related content in my mind while dusting or taking out the trash. So, I decided to keep separate blogs for these two related, yet distinct topics. The address for that blog is satellitecognition.blogspot.com

Thoughts on the Eventual End of This Innocence

When DS was a toddler we spent quite a bit of time at the park. Often a teenage boy would show up. He didn't make contact with or look at anyone, just swung very high on a swing for about twenty minutes and then left. Each time without fail mothers would make their children leave the swing area when this boy arrived. Then the women would whisper amongst themselves about how odd was this person and say things like, "why is he here?".

One day, when I could take it no longer, I said to one of the moms, absent any malice or judgement, yet in a tone that was flat and demoralized: "You don't need to worry about him: he's not dangerous; he's autistic. He swings high like that because it balances his nervous system and feels good. In swinging high like that he's taking care of himself. " Then I resumed swinging my Autistic toddler next to her neurotypical one.

Those incidents have haunted me for years.

My son is now seven years old. Today we went to the library. When DS found a Thomas the Tank Engine video he ran ecstatically to the checkout desk - all giggles, flapping, and jumping up and down. If the person checking our items out was thinking "oh, poor disabled kid" her face did not reveal such. Rather her eyes danced, as if marveling at DS's pure bliss. This is a common reaction to my son from strangers. They get completely caught up in his enthusiasm for the moment. And why wouldn't they? I mean, people do yoga and meditate and some do drugs, all in attempt to experience the sheer state of bliss in which this beautiful, blond haired child finds in any moment.

Though I'm not one to long linger on what ifs, today my mind did fast-forwarded ten years. DS is about seventeen, the same age as that Autistic boy in the park. Will these mannerisms that other moms now find so cute in DS, strike fear in their hearts if they pass him alone on the street in ten years? Will they pull their children close if DS starts talking to himself or hand flapping in public? My son has enough social awareness to notice. How does a mother prepare her child for this, much less herself?