Tag Archives: asperger’s

Del Sur II: ¿Asperger’s?

Posted on by findingmykid
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I read James Joyce for the first time when I was 17. It was A Portrait of the Artist as a Young Man, and it knocked my socks clean off. With the benefit of maturity, I’m pretty sure that most teenagers who read A Portrait of the Artist end up sockless, but 27 years ago, in high school, I felt singled out and special: James Joyce got me. He wrote the novel for himself and also for me. Stephen Dedalus was an alter ego for Joyce and me both. His stream of consciousness was also the wandering path of my own mind.

Martin speaks constantly nowadays. Constantly. It’s as if, those years when he lacked language to express himself, he built a bank of unsaid thoughts, and now the words gush, unfiltered. He alights the school bus yammering. Dinner is a series of, “Hang on, Martin. How about if the grown-ups get to talk for a minute?” He falls asleep holding court with his stuffed animals. Wednesday morning he materialized in our bedroom at 4:00 am and said something like, “I just woke up. My body woke me up. Maybe I’m not sleepy anymore? It’s still dark outside. Your clock says 3:54. Can I watch television? It’s Wednesday. I have school today. Why do you think I’m awake? Are you getting up now? My covers were tangled.” (I managed to convince him that his body woke him up because he needed to go to the bathroom. He went to the bathroom, I untangled his covers and tucked him back in, and blessed silence fell again.) I have become one with Stephen Dedalus. I’m living a stream-of-consciousness existence, and the consciousness is seven years old.

In South America, with few planned activities and much free time, I experienced just how very much Martin talks these days, and usually to me. He was a running soundtrack of our trip. “This morning I woke up at 7:37. Mommy, were you awake? Did you hear me get up? I looked at the clock, and it said 7:37. I wanted to get up at 7:00. I got up 37 minutes late. It was already light out. Tío was getting ready for work. I looked out the window and saw a balloon in the sky. Mommy, where were you? I found you in the kitchen. What time did you get up? What time did you eat breakfast? I played with my iPad while I was waiting for breakfast. Today my cousins are coming over. They are still in school. What should we do before they come over?” His cousins rang mute by comparison.

I am not complaining, not by any means. If you’ve had a child without functional language, if you once thought “I want you to do that again” was the linguistic apex of beauty and complexity, you understand: I, we, have fought for every sentence that Martin emits, and his chatter is our prize.

That’s what I remind myself when I’m hearing, for the 478th time, that there are three mommies and Martin needs to decide which is the real mommy. (Some episode of Mickey Mouse Clubhouse evidently had two Goofy characters, only one of which was real, or something like that, and Martin’s been running with the game for weeks.) He’s perseverating. The game is annoying. But the sentences are perfect, the syntax is solid, and every day he picks up new idioms.

So here is a question: Doesn’t this sound a lot like Martin has Asperger’s? Classic hallmarks of Asperger’s are a preference for the company of adults over children; long-winded discourse, regardless of whether anyone is listening; repeated return to one topic; speaking in a fast or “jerky” voice. Martin’s official diagnosis, now, is ADHD. The (mainstream) neurodevelopmental psychologist opined that Martin no longer meets the diagnostic criteria for autism. Asperger’s is a form of autism. What gives?

Good thing I’m not that into behaviorally based diagnoses. I followed Stephen Dedalus. I can follow this kid, wherever he’s taking us.

Judgments

Posted on by findingmykid
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Our family is working to alleviate Martin’s autism by healing his immune system, instead of using medication to disguise the health problems. One day, that approach could change, as I mentioned in the post titled “New Sleep, No Crutch”:

Of course I’m familiar with methylphenidate, amphetamine salts, guanfacine, and so forth—drugs that might improve Martin’s still-abysmal attention span. Maybe one day we’ll turn to such resources (in the end, I remain a pragmatist). But for now, while we have the time and opportunity, I choose to work toward eliminating the cause of his short attention span, instead of using drugs to mask the symptoms.

In response, I received this comment from a reader:

As a pharmacist and a mom with a child diagnosed with Asperger’s I think your approach is great. I hesitated giving my own child medication until absolutely necessary. After years of hesitation, finally treating my son’s attention deficit with medication allowed his grades to improve significantly. If you aren’t at the point where that is necessary, by all means use as little drug intervention as possible.

Let’s talk about a topic underlying that comment: judgments.

I went to last year’s Autism One conference with my friend Stacey, who is also working to recover her son. Stacey attended Kerri Rivera’s presentation on her chlorine dioxide (ClO2, or “CD”) parasite protocol. (I was at another, concurrent lecture. Don’t remember which.) After Stacey told me about CD, I looked up some information and talked to many parents who use the protocol. Basically, Rivera uses low-dose oxidation, in the form of chlorine dioxide, to destroy pathogens/parasites and heavy metals.

I told Stacey that CD is not a protocol I would try with Martin, because (1) I have concerns about its long-term health effects, and (2) it requires giving enemas, which I think would violate Martin’s body integrity. (We treat pathogens and parasites through other methods. For example, Martin consumes diatomaceous earth daily, and around each full moon he takes pyrantel and, topically, warmed castor oil. In the past, Martin also has swallowed mebendazole to fight parasites.)

Some weeks later Stacey and I, back in New York, met for lunch. Stacey told me that she had done more research, read Rivera’s book, been in contact with Rivera via email, and ultimately decided to follow the CD protocol with her own son. As Stacey told me this last part—that she had decided to go ahead with CD—she looked away and ducked her head as if she were about to get slugged. Then she added, “I know you’re not keen on CD. I just feel like it will help. Don’t judge me.”

Much later, I had lunch with a friend whose elementary-school daughter has been diagnosed with ADD or similar disorder. My friend wanted to talk about what we do for Martin and whether any of our protocol might help her daughter. I explained what I think are some underlying similarities between ASD and ADD, and what diet and supplements might be able to achieve. She mulled the information, asked a lot of questions.

Fast-forward two months. I was lunching again with the same friend. She said that she and her husband are medicating their daughter to help the ADD. I sensed that she was watching for my reaction. Then she added, “We did try fish oil. It didn’t seem to work.” I realized my friend was afraid that, because we do diet and biomed/homeopathy for Martin, and not medication, I was going to deride her family’s decision to medicate.

My response was the same, to both Stacey and this friend. I said: “Don’t worry. After three years of biomed, I am way, way beyond judging anyone else’s path.”

I, personally, believe that Christianity, and specifically Protestantism, and more specifically the Protestantism most closely associated with the Magisterial Reformation, though tinted with elements of the later Radical Reformation, is the truest faith. That’s why I practice Mostly Magisterial Quasi-Radical Protestant Christianity. It does not mean that I think my friends who are Roman Catholic or Jewish or Muslim or Hindu or nothing at all are “damned” or destined to unfulfilling lives. I think I’m right. They think they’re right. Maybe we’re all right, to whatever degree.

In the world of children with challenges, regardless of what path a family takes, I respect anyone who is (1) trying, and (2) not acting callously. Stacey has looked into the CD protocol and believes it will help her son. My friend reports that a drug targeting ADD has ended the homework battles that were ruining her evenings. The pharmacist who was kind enough to comment on my earlier post hesitated to medicate her son but now finds that doing so has improved his focus and grades.

Plenty of people—I’m pretty sure that, somehow, I run into all such people, all of them in the entire world—are ready to condemn my and my husband’s choices for Martin, from diet to homeopathy to school. I hate that. I hate to be judged.

And so that’s it. I’m way, way beyond throwing stones at how anyone else treats autism.

Martin, out and about. No judgments here.

Martin, out and about. No judgments here.

Diagnosis

Posted on by findingmykid
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Last year Adrian read Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, a book about children who are profoundly “different” from their parents. Solomon profiles families affected by mental illness, Down syndrome, deafness, dwarfism, gender identity, autism, along with parents whose children were conceived in rape or grew up to commit mass murder.

Andrew Solomon also has an article titled “The Reckoning” in this week’s New Yorker, based on interviews he conducted with Peter Lanza, the estranged father of Adam Lanza.

Adam Lanza was the 20-year-old man who, on 14 December 2012, killed his mother, then 20 young children and six teachers at Sandy Hook Elementary School in Newtown, Connecticut, and then himself. I blogged here about the fact that Adam was diagnosed with Asperger’s Syndrome.

On NPR’s Fresh Air program this week, host Terry Gross interviewed Andrew Solomon about “The Reckoning.” Solomon made a point that also appears in the article, a point about diagnosis: According to Peter Lanza, receiving a diagnosis—Asperger’s Syndrome, now regarded as high-functioning autism—enabled him and his ex-wife, Nancy (Adam’s mother), to ignore signs of more troubling developments in their son. As Adam became isolated, and prone to obsessive-compulsive behaviors, and fascinated with violence, including violence against children, his parents attributed the oddities to Asperger’s. Adam has Asperger’s Syndrome, they thought. Asperger’s makes him behave strangely.

I didn’t think, in the weeks after 14 December 2012, and I don’t think now, that Adam Lanza’s parents were culpable in what happened at Sandy Hook. That’s a ridiculous notion. They talked. They tried. They sought the advice of specialists. Nancy Lanza appeared to believe, genuinely, that coddling Adam and his increasingly disturbing whims was the best means of supporting her son. The burden we place on parents today is too great even without attributing to them their children’s reprehensible violence.

Without in any way blaming Peter or Nancy Lanza, I appreciate Peter Lanza’s recognition (and Andrew Solomon’s explanation) that a diagnosis is broad and easy to hide behind.

To that substantive point, I will add one more: A diagnosis of autism, while it may be comforting, is largely meaningless.

Martin does not “have autism.” Martin has a variety of conditions, linked by autoimmune disorder, that result in symptoms labeled as autism.

It is minimally probative when doctors label symptoms as disease. Suppose that a man goes to the doctor and is diagnosed with “wheezing.” Suppose that the doctor tells this man that many helpful therapies exist to alleviate wheezing, including throat lozenges, tea with honey, breathing exercises, and even CPAP masks. Suppose the doctor suggests that the man eliminate smoking from his routine, because smoking is known to exacerbate wheezing. Suppose the doctor goes so far as to prescribe a drug that relaxes the airwaves, so that the man can walk about with his wheezing less evident.

Would you think the doctor had been thorough? That he had done his job?

Or would you fault the doctor for addressing the symptoms but failing to diagnose lung cancer, the disease that caused the wheezing?

When Martin was diagnosed with PDD-NOS, and then with autism, I cried. A lot. Even Adrian cried. Autism is treated like a death sentence. Parents are coached to grieve for the child who once was but will not be again.

I wonder now what the days surrounding Martin’s diagnosis would have been like if the team of “experts” we paid had said something like this:

Your son has a complicated autoimmune disorder. His gut, where most of the immune system subsists, doesn’t have the right balance of beneficial flora, and therefore he can’t digest nutrients properly or respond to intruders like parasites, harmful germs, unchecked proprionic acid. On a related note, your son has a mitochondrial processing disorder, which is causing low muscle tone and lethargy. Several genetic abnormalities are contributing to the injuries. The totality of these disorders is resulting in systemic inflammation as a subpar immune response, and that inflammation, which persists even in the brain, is causing “misfires” within the neural synapses. These misfires result in the symptoms you’re witnessing: repetitive behaviors, lack of eye contact, social awkwardness, inattention, drifting, and speech skills that lag behind your son’s cognitive ability.

I imagine that, if three years ago we had been told all that, we would have cried less and got to work sooner. We would have asked questions like how to re-balance the gut flora, how to resolve the mitochondrial processing failures, and whether the genetic abnormalities can be addressed.

(We might also have asked how this autoimmune disorder arose, and whether it had anything to do with the hospital threatening us, placing our healthy son in the NICU, and pumping him full of antibiotics, after the unplanned C-section robbed him of the protective effects of his mother’s vaginal microbes. That’s a topic for another post.)

I won’t deny that I take comfort in the existence of an “autism community.” (Solomon makes the point that Adam Lanza rejected his Asperger’s diagnosis, and refused to consider himself part of the Asperger’s community.) I do, however, argue that the autism diagnosis is an impediment to recovery. “Autism” sounds impossibly untreatable. The health conditions underlying autism? Not so untreatable. Those we can roll up our sleeves and tackle.

Andrew Solomon, who is public about his own battle with depression, lamented in the Fresh Air interview that Adam Lanza’s depression might have been treatable, had it been recognized as depression instead of hidden within Asperger’s. I ask: Would the depression have been hidden if Adam’s parents had realized that Asperger’s Syndrome is a symptom of an underlying condition? Or might they have suspected that the depression arose, in whatever measure, from the same underlying condition? Might they have had the tools to roll up their sleeves with more success?

Adrian reports that he found Far From the Tree (emotionally) difficult. He put it down for a while after reading that courts tend to issue mild sentences for parents who kill their special-needs children. Some forms of filicide, it appears, are considered forgivable. Would the filicide be so forgivable if those parents had children with diabetes or leukemia or renal failure or any other condition that, with medical and dietary and lifestyle attention, might be kept at bay?

Autism is the symptoms of a treatable medical problem. Diagnosis matters.