One Strike, Almost a Second Strike, and a Continuation

We had the talk with Martin.

Or at least we attempted the talk.

I’m talking about the talk described in my last post.

That talk. The one in which we discuss with Martin how he really is different from other kids.

When Adrian and I met with Martin’s psychologist, she didn’t advocate for revealing Martin’s diagnosis (“ADHD with social-pragmatic language delay”). Instead, the said the better approach might be to talk with Martin in terms of what he’s good at (say, memorizing facts, or learning geography), what he’s pretty good at (say, math), and what still gives him trouble (say, paying attention, or knowing what people mean when they interact). Then we could point out how everyone has a third category: Everyone has trouble here and there.

Adrian and I, strategizing, decided to raise the topic when we went out to dinner Sunday evening. That was my idea. Martin gets nervous when we ask to speak with him at home, because he thinks he’s in trouble. We eat Sunday dinner in a restaurant nearly every week, Martin feels comfortable in that setting, and we make him talk with us anyway, in order to practice manners and to reduce time looking at an iPad or iPhone screen, which is what he’d prefer to be doing. Sunday afternoon, I made paper charts with three columns:

  1. “Things I’m not so good at.”
  2. “Things I’m pretty good at.”
  3. “Things I’m very good at.”

There was a chart for each of us. I thought we could take the focus off Martin by discussing, first, my and Adrian’s weaknesses. After we ordered, I distributed the charts, presenting them as a “fun family activity.” Into column 1, on my chart, I put music, not being anxious, being on time, and paying attention. Into column 2, I put talking to friends, meeting new people, sports, and cooking. Into column 3, I put math, taking written tests, and writing. (Feel free to dispute whether “writing” belonged in my “very good” column.) Adrian admitted that he stinks at soccer, cooking, and being patient, said that he’s pretty good at speaking English (not his native language) and singing, and claimed to be very good at reading and being on time. I struggled to make out most of what Adrian wrote, so I grabbed his chart and added “writing legibly” to the “not so good” column.

Martin went straight for column 3, “very good at”: taekwondo (debatable), skiing (getting there), drums (still figuring out), and spelling (no doubt). In column 2, he included reading (I agree, if we mean straight-up reading, and not reading comprehension) and being patient. Then he stopped, before getting to column 1, “not so good at.” He asked me what he’s not so good at. I replied based directly on something he’d previously told me. “Remember how you told me other kids have better handwriting? So maybe something you’re not that good at is coordination.” “What’s ‘coordination’?” “Coordination is being able to write neatly, or move without bumping into things, and stuff like that. Daddy also doesn’t have much coordination.” “How do you spell ‘coordination’?” “What do you think?” “C-O-O-R-D-I-N-A-T-I-O-N.” (Because, spelling.) He wrote “coordination,” then added “basketball.”

I thanked Adrian and Martin for filling out their charts and began the soliloquy I’d rehearsed, about how everyone has skills that come easy and tasks that make them struggle. I completed less than a sentence before Martin interrupted me to ask, “Is anyone going to see these lists?” I said no, the lists were just for our family to see. Martin flipped his chart face-down and said, “I think we should put these away in case a waiter sees.” I gathered the charts and tucked them into my purse, then resumed speaking. Martin interrupted again, “I think maybe the waiters can hear you.” I promised to speak more quietly. He said, “I don’t want to talk about this.”

Adrian spoke up. “I think maybe Martin would rather have this conversation at home. Is that right, Martin?”

“Yes. At home.”

Strike one.

We got home late (by nine-year-old standards). I did Martin’s supplement routine and got him into bed. Adrian joined, and we restarted the discussion. As soon as I got to the part about everyone having struggles, Martin declared, with finality, “I’m not good at coordination,” then tried to change the subject. I, ever tenacious, suggested other struggles, again from his own prior statements, like his eyes wandering from the page or understanding what peers mean when they speak. Martin said, “I don’t want to talk about this.” I tried to convince him to have the conversation, that discussing strengths and weaknesses helps us understand ourselves. He rolled over and buried his face in a pillow.

It looked like we were headed for strike two, so I threw a Hail Mary. (Apologies for switching sports in my metaphors. I was going to say that I swung blindly, but that’s hardly a way to avoid a strike.) I said, “Do you remember when you said that you’re not a normal kid? Well, no one is a normal kid. There’s no such thing as a normal kid. Every kid has strengths and weaknesses.”

Martin turned his head enough to look at me from the pillow. “No one is normal?” he asked.

“Nope, no one. Even if you can’t see other kids’ weaknesses, they still have them.”

Martin shoved his face back into the pillow, but I could see him nodding in agreement. Good enough. Adrian and I said our goodnights and left.

This is destined to be an ongoing conversation, we decided. We must continue encouraging Martin to discuss his differences and how they affect him. I’m also questioning the wisdom of not revealing his diagnosis. In my head, I’m pursuing a conversation with Martin that opens this way: “Martin, have you ever heard of ADD? It’s a condition that affects a person’s ability to concentrate and pay attention. It’s not the person’s fault. If a person has ADD, her or she can treat the condition and make it better. You have ADD. It’s not your fault. You take all these pills to help make the ADD better.” I’m not sure where that will go, and I have yet to run the idea by Adrian.

The deep, meaningful conversation I hoped to be describing in this post hasn’t happened. So, alas, I need to end this post the same way as the last:

Stay tuned.

Time to Tell

In my last post, I wrote this:

[Martin] even said to me, before Christmas, “Mommy, do you remember when I used to be real shy and have trouble talking to people? That’s getting better. Now I can talk to people.”

By the way, in the seven years since he was diagnosed, Adrian and I have never told Martin that he has, or had, autism. I guess maybe we’re going to call his spectrum disorder “shyness.” I can live with that, at least for now.

This week, Martin followed up, in bed, during our “little chat” (which has become a nightly ritual). He said, “I need help with being shy again.” I asked what he meant, since he’s been doing so well talking to people. He replied, “I’m not doing it right. They don’t answer back.” I asked, “Do you mean how kids sometimes ignore you?” I’ve seen that happen, at school or taekwondo. Martin, in his eagerness, calls out, “Hi, Abby!” or, “Hi, Caleb!” and waves awkwardly as the other child pretends not to hear or makes a face and looks away. Kids can be despicable. Martin replied, “I said thank you to the waiter and he didn’t say ‘You’re welcome’ or anything. I need someone to help me do it right.” So in this instance Martin appeared to be talking about when he issues a comment without making sure he has the recipient’s attention. Most likely he had his face buried in an iPhone or the menu when he said thank you, and the waiter failed to realize he’d been spoken to.

Our little chat about shyness came on the heels of Martin declaring, the previous day, “I’m not a normal kid!” When pressed, he said that his eyes wander. I asked if he meant how he can have trouble looking people in the eyes when they speak. Martin’s eye contact during speech, for what it’s worth, is much improved. Eye contact no longer seems to make him uncomfortable; these days, instead of avoiding eye contact, he just seems to forget to look at his conversation partner. Martin said, “No, like when I’m trying to read. I want to look at the words but my eyes wander away.” Ah. An attention issue.

I relayed both conversations to Adrian. Then I asked him whether we want to reconsider the decision not to tell Martin he has a diagnosis. Together, we decided that the time has come to tell Martin that, indeed, something makes him different from other kids. We reason:

  1. His current diagnosis is ADHD with social/pragmatic language delay. Right or wrong, people find “ADHD” less scary than “autism” (in case Martin starts talking about his diagnosis).
  2. Previously, hearing that he has a disability might have been disheartening. Now, by contrast, we can point out that talking, fitting in, and acting like the other kids are getting easier—Martin has said as much, himself—and will continue to improve.
  3. His self-esteem needs a boost. He sees the discrepancies now, sees himself on the fringe. He needs to know that he’s not a bad kid; he has a body invader called ADHD that we are working on evicting.

We’ve got an appointment tomorrow morning with Martin’s psychologist, for her advice on how to tell Martin, which we hope to do as soon as this weekend. Right now the conversation looms large. On the other hand, a tiny part of me thinks Martin will respond with something like, “Yeah. I already know that.”

Stay tuned.

Double the Population, Triple the Population, Nowhere the Resources

Two months ago I posted the testimony of my friend Victoria, who was appearing before the Minnesota legislature in support of adding autism as a qualifying condition for medical cannabis. Victoria stated that cannabis saved her son Julian’s life. I said I agreed with her assessment. Cannabis likely did save Julian’s life. In the year before he started using medical cannabis, Julian had shuffled in and out of the hospital, including several extended stays during which he had to be restrained. Julian was in so much pain that he repeatedly concussed himself with his own fists.

Last month I spotted an article suggesting that Julian’s situation is not uncommon enough. These paragraphs interested me the most:

Nationally, the number of people with an autism diagnosis who were seen in hospital ERs nearly doubled from 81,628 in 2009 to 159,517 five years later, according to the latest available data from the federal Agency for Healthcare Research and Quality. The number admitted also soared, from 13,903 in 2009 to 26,811 in 2014.

That same year, California’s state health planning and development department recorded acute-care hospital stays of at least a month for 60 cases of patients with an autism diagnosis. The longest were 211 and 333 days.

The problem parallels the issue known as psychiatric boarding, which has been an increasing concern in recent years for a range of mental illnesses. Both trace to the shortcomings of deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings. But the resources to support that dwindled long ago, and then came the Great Recession of 2008, when local, state and federal budget woes forced sharp cuts in developmental and mental health services.

“As more children with autism are identified, and as the population is growing larger and older, we see a lot more mental health needs in children and adolescents with autism,” explained Aaron Nayfack, a developmental pediatrician at Sutter Health’s Palo Alto Medical Foundation in California who has researched the rise in lengthy hospitalizations. “And we have nowhere near the resources in most communities to take care of these children in home settings.”

The first quoted paragraph suggests a steep increase, from 2009 to 2014, in both ER visits and admissions among persons with autism. The second paragraph notes how long some of those 2014 admissions were. The third paragraph suggests that autism hospital admissions, like psychiatric boarding, originate in “deinstitutionalization, the national movement that aimed to close large public facilities and provide care through community settings.” Read closely, though. Autism admissions might (I express no opinion) originate in deinstitutionalization, but nothing in the article establishes that deinstitutionalization could account for a near-doubling of autism-related ER visits and admissions from 2009 through 2014.

I am saying “autism-related” on an assumption. The article discusses ER visits and admissions among “people with an autism diagnosis.” Given that autism is a medical condition, that the hospital staff involved would have specifically noted that the patients had autism, that a high percentage of the visits resulted in hospital admissions, and that the article is about care for autism, I think we would be hard-pressed to argue that the hospital visits were not “autism-related.”

Instead, according to the article, resources for care in community settings dwindled before the Great Recession in 2008, which itself predates the 2009 initial statistics. So while persons with autism might have started being seen at and admitted to hospitals because of deinstitutionalization, something else is driving the increase in such cases from 2009 through 2014.

That “something else” is the rapid increase in autism rates.

The article lends support to an argument I’ve made before, namely, that increasing rates of autism cannot be explained by better diagnosing, because rates are increasing across the spectrum. Better diagnosing might (no opinion expressed) account for more cases at the mild end of the spectrum, the kids formerly known as “quirky” or “antisocial.” But we’re also faced with a wave of severely affected kids: the self-injurious who are unable to verbalize their pain (which, so long as we fail to treat autism medically, continues to manifest). This wave, and the attendant phenomena like hospital admissions and extended stays, cannot be dismissed as better diagnosing. These kids would never have been undiagnosed.

Victoria’s son Julian is one such kid. Over the past three years—to be precise, in the three years since Julian jumped from a balcony and broke his back and both his legs—Victoria and her husband have made tremendous strides in restoring Julian’s health through diet, supplementation, and homeopathy. Julian has progressed from small and underweight to tall and substantial, his allergy shiners have faded, and he has begun to verbalize. Medical cannabis stopped the self-injury and lashing out at others. His path suggests he is done with extended hospital stays.

The article I quoted does not deny the increasing autism rates, or pin them on better diagnosing. The developmental pediatrician is quoted: “As more children with autism are identified, and as the population is growing larger and older . . . .” On the other hand, the article does not highlight the increasing rates, and it does not end the way I would prefer, which would be something like: “We have an emergency on our hands,” explained Aaron Nayfack, a developmental pediatrician. “Not only do we have nowhere near the resources in most communities to take care of these children in home settings, we have more and more children being affected, including severely affected by autism. We need the resources to care for them. And we need the resources and the research to stop this epidemic. Now.”

Ultima Actualización de Nicaragua: Diagnóstico

I still remember the first time I was asked if Martin had a diagnosis. That first time, it came as an indirect question. It was November 2010. Martin was two years and four months old. We had no official diagnosis, only my high-school friend’s assessment: “I know this isn’t easy to hear, but based on what I’ve seen, Martin has autism.” Martin had stopped pointing and started posturing, squatting to crunch the pain in his gut. He’d also lost eye contact. He’d done more than lost eye contact. He was aggressively avoiding eye contact. Whenever he perceived a face near his, he thrust his eyes sideways.

“Yeah, what is that? Is something wrong?” A friend asked. Martin, bundled in winter gear and strapped almost immobile into a stroller, was still managing to turn his head, move his eyes, anything to avoid looking at her. Unprepared, I fumbled an answer, “Um, technically, I think some people might call it ‘high-functioning autism,’ but we’re still figuring things out. Probably it’s fine.”

Here is my last post on Nicaragua (this year, at least): I can’t remember, since November 2010, ever going two whole months without being asked, “Does he have a diagnosis?”

Thank you, Nicaraguans and ex-pats. Thank you for not caring about a diagnosis.

Del Sur IV: That Doesn’t Sound So Bad

Adrian’s two sisters, each a mother herself, don’t know about Martin’s autism, because Adrian refuses to tell them. Adrian’s official position is that, given the discrimination that still exists against disabilities and difference in his country of origin (where my in-laws reside), he would rather not see Martin “branded.” (Adrian’s parents and brother, Pancho, know the diagnosis. Adrian is closer to them.) I don’t begrudge Adrian’s choice. Even here in the States, we haven’t been public about Martin’s autism, or former autism.

On the other hand, the ignorance of my sisters-in-law leaves me in an awkward spot when Martin and I visit South America. For years I’ve avoided spending too much time for them, or covered when it came to Martin’s behavior, like I covered on our first day this visit. How many times can I say Martin is tired, jet-lagged, on a different schedule, shy, not feeling his best? Try me.

I decided this year I might be able to do something different. I approached Adrian with the idea of telling one sister—Claudia, who lives in the capital city we were visiting, and whom Adrian likes better—about Martin’s new diagnosis, ADHD. “Autism” strikes fear. “ADHD,” on the other hand, makes people wonder if your kid is taking the same drugs as their kids. Adrian agreed. ADHD doesn’t sound scary like autism sounds scary. We decided that I would share with Claudia “our challenges with ADHD.”

I didn’t really find a good opportunity to talk until our last evening in town, when Martin stayed with my mother-in-law while I went out to dinner with Pancho and Claudia. Then I fumbled, trying to come up with a way to initiate the conversation. An hour into dinner, Claudia said we should come down in July to go skiing during her children’s winter break.

“I wish we could! But Martin goes to school during the summer. Next year maybe we could come—he might change to a new school and have summers off.”

Awkward. Still, my comment moved the conversation in the desired direction. Claudia asked, “Martin is changing to a new school?”

“Yes,” I replied. “Right now he goes to a special school for kids with ADHD. But his attention has been getting better. We are thinking he can go to a regular school, with some extra help.”

If this fazed Claudia, she gave no hint. She said, “And then he would have the summer off? Do you think you could come here for the whole summer? We could do so much skiing!”

“I don’t know about the whole summer. We could probably come for a while,” I said. “It all depends on whether he gets to switch schools. We still have work to do on the attention span and all the issues that have to do with ADHD. We’re not sure he’s totally ready to leave his special school.”

Across from me, Pancho was nodding. He has known about Martin’s issues for years and could see what I was trying to do.

Claudia said, “This will be great. I’ll send you the schedule for my kids’ school vacation, so you’ll know when to come.”

Last try. I said, “I will have to let you know what happens. ADHD is very hard to accommodate properly in school. You can see Martin’s poor attention span.”

Claudia said, “I’ve heard it’s very common in America to change schools. Not here. My children will go to the same school until university, just like we did.”

There went my big talk with Claudia. At least, somewhere in her head is the notion that Martin has special challenges. I suppose that’s enough for now.

Final note: In the first paragraph of this post, I mentioned “the discrimination that still exists against disabilities and difference in [Adrian’s] county of origin.” I don’t know whether the culture of Adrian’s country of origin engenders unusual bias against disability. On my visits there, some 10 times and counting, I haven’t witnessed autism discrimination. But when it comes to Adrian’s own country of origin, I will let his opinion carry the day.

 

Past Tense

Years ago, when we were only a few months into Martin’s recovery, I was leafing through a magazine I found in our doctor’s waiting room. I don’t remember the publication’s title, or even its purpose; I think it may have been a resource for parents pursuing biomed.

What I do remember were a couple of personal-experience pieces written by typically developing teenagers in support of their ASD siblings. In one, a girl whose brother was already recovered talked about her brother’s autism and how it had led her to advocating on behalf of students with disabilities. Although my memory of the other details is nebulous, I can still recall this phrase: “During the time my family was affected by autism . . . .”

Those words struck me. They were so comforting, how they suggested that there can be an other side to autism, a time when autism is not a daily struggle, when recovery is not the long road (to where?) ahead, but when the reality has become a memory.

I’ve written now and again about autism symptoms that are so far gone that they no longer exist in my daily consciousness.

Martin, for official/school purposes, has lost his autism diagnosis.

We still have work to do. Lots of work. Martin’s executing functioning—meh. As a corollary, Martin’s attention span and ability to plan—ugh. Martin still has a diagnosis. “ADHD,” our new territory.

Yet—.

Last week I attended a conference in California, for the consumer advocacy work I do. I was meeting with the director of a non-profit organization devoted to monitoring toxins in personal-care and household products. She asked how I became involved in representing consumers.

I said, “Through my son. He had autism.”

Attention-Deficit Hyperactivity Disorder (ADHD)

Because we are thinking about changing Martin’s school placement, Adrian and I decided to order a new neuropsychological educational assessment (a “neuropsych”). Martin also had a neuropsych three years ago, before he entered kindergarten, and last year. Those first two neuropsychs were completed by Dr. DS, a practitioner in Manhattan. This time we switched to Dr. PS, a practitioner in a suburb near ours, who knows our local schools and who had never before met Martin. Dr. DS and Dr. PS are mainstream neurodevelopmental psychiatrists, not biomed practitioners. Before Dr. PS started her testing, I enumerated Martin’s issues at this time: paying attention, sitting still, emotional regulation. I did not say “autism,” though she certainly must have seen that word on the previous neuropsychs and the school records I provided.

We had our parent meeting with Dr. PS last week, after she’d had three lengthy testing sessions with Martin. She told us that Martin’s primary trouble lies in executive functioning. She diagnosed him with ADHD, compounded by social/pragmatic language delays.

She didn’t mention “autism.”

Adrian asked, “You’re saying he has attention deficit and hyperactivity?”

Dr. PS answered, “Really, hyperactivity is a minor part. The primary issue is attention deficit, this inability to focus. That stems from the executive functioning and affects his performance in many areas, including school.”

Adrian is Adrian. He likes concrete, definitive responses. He asked, immediately, “Um, why don’t you think Martin has autism?”—not the question I would have posed. I like to leave well enough alone.

Dr. PS said that different practitioners come at executive functioning in different ways. Martin, she said, presents with “a little bit of this, and a little bit of that,” such that, perhaps, a doctor focused on autism might find a mild spectrum disorder. In Dr. PS’s opinion, however, Martin “does not meet the diagnostic criteria for autism spectrum disorder.” He presents much more strongly as a child with attention deficits. True, he retains difficulties with social/pragmatic language, but he is eager to socialize and keenly aware of others. No, she concluded, he doesn’t have autism.

“So,” I said to Adrian as we climbed into bed that night, “we don’t have a son with autism anymore.”

Adrian paused. Then he replied, “I guess we’ve known that for a while.”

I guess we have.

Martin can express himself, now. Martin doesn’t really have repetitive behaviors, anymore. Martin’s perseveration, which once was literal inability to stop speaking, has faded to a penchant for prattling about obscure topics, like marching bands and features of my car’s dashboard. Martin knows exactly what other kids are up to. He won’t let me affix a sport strap to his glasses anymore, because “Zach and John don’t have straps on their glasses.” Martin is awkward, socially, and his attention span has the half-life of hydrogen-7. But “autism”? These days, that seems too harsh.

On the other hand, it feels strange—to say I don’t have a son with autism. We still have a lot of work to do with Martin’s executive functioning, and the spectrum has been a driving component of our life, even of my own identity. We socialize with other autism families. We swap articles about autism. I even pre-board airplanes, on the basis that “my son has autism.” (The pre-boarding will have to stop. I will let airline attendants draw their own inferences, but I won’t lie.) Autism, autism, autism. What do I do now? Find ADHD friends?

Adrian and I have never been public about Martin’s diagnosis. Indeed, we’ve gone to lengths to hide his autism. In part, that’s because “autism” is a scary word. ADHD or ADD, not so scary. People seem to love to self-diagnosis with ADD. Maybe now we can go public with that moniker.

Almost six years ago—the summer that Martin turned two—was when Adrian and I started to realize that Martin had “issues.” Other kids blew out the candles on their birthday cakes. Martin stared into the abyss over his own cake. (We later discovered he lacked the ability to pucker, or to blow.) In the toddler soccer program, when the coach said, “Run and kick a cone,” nine kids ran and kicked a cone. Martin wandered to the next field and tipped over the goal.

By that fall, we were sufficiently concerned to ask a high-school friend of mine, an EI provider, to come take a look at Martin. She did, and she knew immediately that he had autism. The first psychologist, sent by New York City only a couple weeks after my friend saw Martin, said, “It’s autism. You might call it ‘high-functioning autism,’ or, ‘Asperger’s syndrome’.” But though Adrian and I didn’t realize it, Martin was backsliding. He had already lost eye contact and was becoming less responsive every day. By the time the Big Imposing Hospital’s neurodevelopmental team got hold of Martin, several months later, there was no mention of “high-functioning” or “Asperger’s.” They diagnosed Martin with moderate autism and threw in the kitchen sink of co-conditions: delays in every type of communication, low muscle tone and lack of proprioceptive awareness, sleep disorder, possible cognitive impairment, and on, and on, and on.

Let’s call that the low point.

Fortunately, we had already started biomed and the tedious brick-by-brick struggle to free our son from autism.

When he was three, Martin’s special-needs preschool removed him from a self-contained 12-1-1 classroom (12 special-ed students, one teacher, one aide) based on his need for more supervision, and his inability to keep up with the other developmentally delayed three-year-olds. The school placed him instead in an 8-1-2 classroom, in which two other students had 1-on-1 aides (in total, eight special-ed students, one teacher, two classroom aides, and two dedicated aides). Martin was left in that classroom for two years.

When it came time to find a kindergarten—we lived in New York City, where kids don’t just go to the local school, as they might elsewhere—we had Martin’s first neuropsych done. Dr. DS, the Manhattan neurodevelopmental psychologist, confirmed the autism diagnosis as “not a close call.” He told us that our desired elementary school, which has 12-student special-ed classrooms, would not provide enough support for Martin, and would be likely too advanced, academically. He said we were “really looking more at a need for 1-on-1 support” or a six-student ABA classroom.

Forget that, Adrian and I decided. When the desired school, with the 12-student classrooms, accepted Martin, we sent him there. And he excelled.

Two years later, before second grade, it was time for another neuropsych. To get a reasonably comparative assessment, we brought Martin back to Dr. DS.

Dr. DS admitted that he had been mistaken to think Martin wouldn’t make it at our chosen school. In fact, Dr. DS was not so sure Martin still needed all the support the school offered. “I’ve seen some remarkable progress,” Dr. DS said when he presented us with Martin’s report. Martin had moved from the third percentile to the 83rd percentile in receptive language, for example, and though the autism was still prevalent, he had made tremendous gains in other areas, too. What were we doing?

I told Dr. DS about our biomed protocol and nontraditional therapies, like HANDLE and Anat Baniel Method. He listened. At least he appeared to listen. When I finished, Adrian asked Dr. DS what our next steps should be, and Dr. DS said, “Medicate Martin. Now is a good time to start experimenting with medications, so that by the time he reaches third grade, when the curriculum becomes more advanced, you will already know the best combination and dosage of medications, whether it’s depressants, stimulants, or something else.”

Thank you, Dr. DS!

Another year passed, and this time we brought Martin to suburban Dr. PS, who opined that autism spectrum disorder is no longer the correct diagnosis for Martin. She said that her testing revealed an upward trajectory from Dr. DS’s reports. While Martin once had significant delays in all four areas of language, Dr. PS said, he now exhibited delay only in pragmatic/social language. “So looking at his history,” she said, “we can see that Martin was not destined to be a child with receptive or expressive language problems, as those have faded away.”

Destiny? I asked myself. Destiny didn’t resolve Martin’s receptive and expressive language delays. Biomed did.

“What should we be thinking about for next year?” Adrian asked.

Three components, said Dr. PS. First, the choice of school setting. Second, additional therapies and resources. And third, medication. It’s time to start experimenting to find the best medication for Martin’s ADHD.

I’m tempted to write, Thank you, Dr. PS! There’s an addendum, however. I told Dr. PS that we are “hesitant” to medicate Martin because doing so would interfere with our biomed protocol. The progress we’ve made, I explained, has resulted from a restricted diet, supplementation, and constant reevaluation of Martin’s health needs. Dr. PS—remember, she’s a mainstream neurodevelopmental psychiatrist—asked pertinent questions, like what kind of doctor we see and whether the protocol is test-based. (There are charlatans in the autism-recovery universe. I know that.) After I provided sufficient reassurance on those points, Dr. PS said we are probably right not to medicate at this time. If what we are doing biomedically is working, she said, then we should exhaust that route. Experimenting with medication does not have a time limit, and it is okay to start later.

So, actually, really, thank you, Dr. PS. Thank you for listening and reconsidering.

And, for my readers, especially my long-term readers, here’s a special tidbit: Do you remember my lengthy post about Mr. and Mrs. Twice-Exceptional, the Quirky Genius School, and the movie The Imitation Game? You might want to revisit that one.

As she was reviewing Martin’s test scores with us, Dr. PS pointed out a wide discrepancy in the different fields. In many academic areas, including reasoning and some language-based tasks, Martin’s scores were at the top of the bell curve, well above the average range. He uses his formidable intellect and those stand-out skills, Dr. PS said, to compensate for his still subpar executive functioning.

“You see,” Dr. PS told us, “your son is what we refer to as ‘twice-exceptional’.”

Diagnosis

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.