Parents of spectrum kids fit into three rough categories:

1. Haven’t heard of biomedical recovery / think biomedical recovery is quackery. These parents may rely on behavioral therapies, sleep assistance, or pharmaceuticals to cope with ASD, but they don’t make special efforts regarding diet or medical interventions.
2. Are doing some biomedical work. These parents buy into those limited biomedical processes that “studies have shown” to help, such as the GFCF diet or oxytocin hormone, but they don’t do the whole DAN! protocol or anything else considered radical.
3. Have dived headlong into recovery. Obviously, I fit into this category. Let’s call me, and others like me, the “don’t care if it’s been proven, as long as it’s not going to hurt” crowd.

I’ve tried to emphasize in this blog that, although Adrian and I are in Category No. 3, I’m not anti-Category No. 1 or -Category No. 2. To the contrary, I know that we’re all trying to do what’s right for our kids. I am yet to meet the parent who says, “I don’t think biomedical recovery works, but I’ve decided to put my family through all that the process entails, just for kicks,” or, “I think that biomedical recovery works, but I’d rather not recover my son.” Parents love their children and come to their own decisions on issues as sensitive as treating autism. I—especially given my experience with Martin’s birth, when my wishes were not respected—honestly, wholeheartedly, and unreservedly respect those decisions.

As for me and Adrian, we skipped Category No. 2. We jumped from Category No. 1 straight to Category No. 3, and we did so within less than one week. Over a series of three posts (and maybe a postscript), each titled “The A-ha Moment,” I’m going to describe what prompted such a rapid transformation.

It was early September 2010, thirteen months ago, when Adrian and I first suspected that Martin’s development might be not only slow, but beyond the normal range of variance one expects in toddlers. In October, our friend, an EI professional upstate, evaluated Martin and said, informally and unofficially, that his condition looked like autism. By November, New York State (which does not use the “autism” epithet on young children) had labeled Martin “PDD” and accepted him into EI. (In spring 2011, the Big Imposing Hospital’s pediatric neurodevelopment department confirmed what was clear to everyone else and gave the official diagnosis of autism spectrum disorder.)

From October 2010 until February 2011, Adrian and I were Category No. 1, to the side of “haven’t heard of biomedical recovery” more than “think biomedical recovery is quackery.” I think I knew vaguely that some controversy existed over the actress Jenny McCarthy and whether her son had recovery from autism, or whether he’d never had it in the first place. (I could not then, and still cannot, identify this actress by sight, or name any role she’s played. I’m not much of a television or movies person. I do, however, now know Jenny McCarthy to be an activist in favor of treating ASD biomedically.) In any event, I had heard, and I believed, that behavioral therapy, and specifically ABA-based therapy, provided the best hope, or even the only proven method, for making progress against autism. We got Martin behavioral therapy. We got him hours and hours of behavioral therapy daily: two hours of home-based ABA, two hours of center-based ABA, 30 minutes of speech therapy, 30 minutes of occupational therapy, 30 minutes of physical therapy.

(Before I write anymore, I must say that all this was provided by New York State. I am deeply grateful to live in a state that values Early Intervention and provides this level of service to children with developmental delays. Without a doubt, EI makes a great difference for a great many children.)

Martin made some initial gains with all this therapy. He sat still longer. He sometimes responded “yes” to questions, instead of repeating the inquirer’s last words. But several issues persisted that seemed more medical than psychological. For example, lethargy often overcame Martin, and he lay on the floor, absentmindedly pushing a toy. He bent at the waist and pushed his hands into his distended belly as if he was experiencing gut pain. And then there was sleeping. Sleeping was, pardon the pun, a nightmare. Martin almost never slept through the night. It could take him 90 minutes or two hours to fall asleep, and usually spent three or even four hours awake between 11:00 p.m. and 5:30 a.m.

It bears mentioning that Adrian and I are lawyers, are fussy and aggressive, and are used to getting what we want. We wanted Martin to improve. Adrian read a lot during the early months after Martin’s diagnosis, mostly mainstream sources like books on behavior. He learned that a gluten-free diet seemed to help some kids on the spectrum, though (from what he’d read) no one was sure why. We resolved to try phasing gluten out of Martin’s diet in January.

We did, indeed, begin phasing out gluten in January, but we never finished the process. Or more accurately stated, we finished phasing out gluten in the context of doing a whole lot else.

That is, in mid-January, Adrian handed me an article he’d printed from the internet. From a mainstream source, a reasonably well-known doctor who reports on medical issues.

The article told the story of a six-year-old boy who, four years earlier, had regressed into autism and become non-verbal.

The boy had recovered.

You would never know, the article stated, that this boy ever had autism. He was now bright and engaging, and a typical grade-schooler.

The article was not long. With only bare-bones analysis, it spoke of “triggering” factors, and how finding what’s triggering autistic symptoms can help to reverse them. This hit-or-miss approach, though painstaking, could offer new hope for the estimated 1-2% of American children with ASD.

To me, the article, the story of the recovered boy, made eminent sense. The light bulb flickered. Autism did not just happen to my son. Something caused, something was still causing, him to have these medical symptoms, which in turn were tied to the developmental delay.

I tacked the article onto the bulletin board in my home office and went to Adrian.

“There’s something we’re missing,” I said, without a trace of doubt. “There’s something more we can do.”

In that moment we left Category No. 1.

A Facebook friend posted this yesterday on his wall, a quote from Jimmy Carter:

My faith demands—this is not optional—my faith demands that I do whatever I can, wherever I am, whenever I can, for as long as I can with whatever I have to try to make a difference.

It spoke to me, in terms of putting all my resources, physical and mental as well as economic, into recovering Martin. My faith does demand so much; whatever I need to sacrifice from my own life, I will give to improve Martin’s.

At the same time, this got me to thinking about something I wrote two days ago, replying to a comment left on this blog’s “About” page regarding biomedical ASD recovery:

I’m not saying this will work. Not saying I know how it works. Not saying everyone should do it. I’m just describing what we’re doing and what happens—fingers crossed.

The Track Two approach we’re taking for Martin is radical. Bucking the established medical community does not fall within every parent’s comfort zone. I know that. I never want this blog to suggest, to insinuate, or even to hint that the only way, or the best way, to “do whatever [you] can” is to undertake biomedical recovery.

Far from it. I am yet to meet the parent of a child with ASD who is not pouring his or her resources, every last drop, into that child. Special education, therapies, patience, protecting, comforting, just getting through the day: It takes all you’ve got. And somehow you do it, whatever you can, wherever you are, whenever you can, for as long as you can with whatever you have. You do.

A few years ago, when Martin was still a baby and before I had any inkling that autism would strike our family, I attended a New York-area church-wide assembly. The church’s governing body stood in session. Under consideration was a resolution stating that member congregations welcome children affected by ASD and affirm their right to attend worship.

The delegates debated the resolution’s precise language. Would it say “autistic children,” or “children affected by autism spectrum disorders”? Should that be “persons” instead of “children”? Why limit it to ASD, instead of including all physical and mental challenges? Finally the nitpicking concluded, and the resolution passed overwhelmingly.

At the time, I found myself thinking, We need a resolution stating that children with autism are welcome in church services? Is that in dispute? Not self-evident?

Now that I’m parenting a child with autism, I may understand better.

Martin and I attend a cozy downtown church that reflects Manhattan sensibilities. The congregation is economically, ethnically, and socially diverse. During the week the building transforms into a soup kitchen and food pantry. It’s a boisterous place. Sunday mornings there, Martin is a rock star. Everyone greets him by name. Older children play with him; teenagers hug and squeeze him; adults engage him in whatever conversation he can handle. If Martin waits patiently after service for the pianist to finish performing, he gets to sit on the bench and strike the ivory keys himself.

During the service I try to position us surrounded by worship regulars—the people who know us. Then I can let my breath out, give Martin leeway. The regulars don’t mind when Martin comes crawling under their seats, grabbing ankles. They smile and pat his head. The regulars steer Martin gently back toward me when he wanders away. They ignore his sing-song chatting and the sound of his toy trains. They beam when he remembers their names, even if he shouts them in the middle of communion. They laugh when the pastor improvises: “I hear ya, Martin. This sermon’s been long, and I’m about to wrap it up.”

What’s much tougher is when we arrive late and end up seated with newcomers or guests, especially the kind who expect church to be solemn and silent. Martin and I enter the sanctuary with clamor approximating a blitzkrieg. We need five minutes just to settle and unpack: toys, books, napkins, containers of nut-and-seed crackers. I get self-conscious about this, if strangers are present. One week Martin’s sippy cup sprayed a couple ounces of seltzer water onto a woman we’d never seen before. She turned bright red, removed the offended blazer, and sat stiffly upright for the next hour, refusing even to look in our direction. Another week an older woman watched Martin scoot himself a few feet along the aisle floor during the sermon. Then she fixed a stern Please control your child stare on me, as if I were going to let him scoot right onto the alter. Which I considered doing. To spite her.

In times like those I see the wisdom of the resolution welcoming kids on the spectrum. Our pastor assures me unflaggingly that he wants Martin attending services, and buttresses the words with actions like finding ways to include Martin. (Martin was the little lamb in the Yuletide nativity scene. The little lamb who sobbed and tried to make off with the Baby Jesus.) But the pastor can’t be in every corner of the church at once; there will always be those who make it their business to express displeasure.

For them, I dream of carrying a copy of the assembly resolution. Of whipping it out of my purse and asking, “Have you seen this? It says that this denomination in this city welcomes children with autism, behavioral shortcomings and all. That means you will accept my son.”

And from there I imagine a magic piece of paper resolving that all of New York welcomes children with ASD. For the commuters who huff in annoyance when Martin moves too slowly on the subway stairs. For the baristas who give my spot at the coffee counter to someone else because I’ve had to chase Martin for a second. For the kids’ club that would rather refund our tuition than deal with Martin in class. Voila! A city made better.

The post really is not about ASD recovery, I suppose. It’s more about feeling sorry for myself. Forgive me the indulgence in exchange for this assurance: I really, really want to stop feeling sorry for myself. Some parents might accomplish that through emotional willpower. I, however, have the emotional willpower of a bacon-addicted puppy. Consequently, the likeliest way for me to stop feeling sorry for myself is to remove the sentimentality’s cause—to give the jerks fewer reasons to complain.

To zap the autism.