Category Archives: Autism Community

He Does Not Mean What He Says

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In a Facebook discussion group today, an uncomfortable topic arose: when kids on the spectrum become fascinated with and/or talk inappropriately about race.

This happened to Martin. For about six months last year and this, Martin made race-based remarks that he knew were untrue or would displease others. He told me and Adrian that “Hispanic kids aren’t as smart.” (As long-time readers of this blog know, Martin is both Hispanic and Spanish-speaking.) He pointed out to his best school friend, repeatedly, that she was the only black student in their class. In the most disheartening incident, the details of which remain unclear, I think Martin cost me an emerging friendship. I had grown closer to a woman from church, who happens to be black. We were enjoying regular lunch dates and pedicures together, and one of her daughters, a middle-schooler, babysat Martin sometimes. One evening I drove the daughter home after she’d spent a few hours with Martin. She was unusually subdued but mentioned no particular troubles. The next Monday I texted her mom to confirm a lunch date and received a response that she was too busy to meet. I replied “no problem” and suggested moving the lunch to the following Monday. My friend did not respond to that text, nor to the next, nor to a request whether her daughter could watch Martin again, nor to several additional attempts at follow-up. Her family, before these events, had switched congregations to accommodate a work schedule, so I had no chance to see her in church. Several weeks later I was walking in town and saw my friend and her daughters across the busy main drag, heading the opposite direction. I waved. Whether they saw me, I do not know. They kept walking, briskly.

When I realized what was going on and asked Martin whether anything had transpired with the daughter, he said no. Tellingly, though, he also slid into partial shut-down mode—that place where he changes topics, or says, “I don’t want to talk about that,” or just becomes agitated. Once Martin begins to shut down, I rarely get any additional trustworthy information from him. To this day, I do not know what he said or did not say to my friend’s daughter. My suspicion is that he commented inappropriately on race or race-related issues, and that the girl assumed our family holds antiquated, wrongful opinions.

I alluded to this difficult time in a February post titled “Current Issues.” I wrote that Martin had been “impulsively calling out words he doesn’t mean, in a manner almost like Tourette Syndrome” and that:

After school last week, Martin confessed that he had hurt his friend Nicole’s feelings by calling her ‘racist’.” [Nicole is not the best friend mentioned above, and is Hispanic, not black.] . . . He added, ‘Sometimes words come into my head that I know I shouldn’t say, but I can’t stop them before they come out of my mouth’.”

After six months or so, Martin’s inappropriate race-based comments faded. (Thank heavens.) Martin tends to cycle through fascinations: the Beatles, trains, geography, world flags, skin color. His race comments fell within that pattern, and also within a larger habit with which we still struggle, i.e., opposite talking. When Martin becomes nervous or agitated, he blurts out something far away from what he really means, often precisely the opposite. If I tell him he’s done using his iPad for the day, he might exclaim, “No iPad, ever again! Throw it away!” Last weekend, we were zip-lining with a group that included three other kids, two girls and a very kind boy who spoke several times with Martin. Made nervous by the attention, Martin eventually blurted, “You should stop talking and go away.” Plainly Martin did not mean what he said; after the excursion was over, he sought the boy out to say he’d had a good time with him and was glad he came. As I wrote in February, sometimes words come into Martin’s head that he knows he shouldn’t say, but he can’t stop them before they come out of his mouth.

At least we have reached a point where Martin catches himself immediately. As soon as he says, “You’re the worst mommy in the world, and I don’t love you,” or, “Let’s not go out to dinner anymore, ever,” he covers by adding, “Kidding! I’m just kidding! I’m not serious.” I would, of course, prefer that Martin catch himself before issuing the offensive or nonsensical words instead of after. Maybe soon? As long as he is still covering with an immediate follow-up, I am trying to get him to switch from “just kidding” to a response more like, “I’m sorry. I didn’t mean to say that. Sometimes the wrong words come out.” But because nothing can be easy in AutismLand, the problem with my proposed new response—“I’m sorry. I didn’t mean to say that”—is that Martin already apologizes too much, habitually. When interactions come off foreign to him, he finds it most expedient to assume he’s made a mistake and to apologize. Helping Martin navigate social encounters, as he increasingly seeks them out, can be equally puzzling for me.

I am so thankful that Martin has closed the door on fascination with race and ethnicity. I hope the door stays closed for him. Unfortunately, I can’t put the chapter behind me, yet. I have let some months pass since my last attempt to speak with my church friend. This fall, when we return to the States, I will renew my efforts. It’s not about saving the friendship, or what she thinks of me and my family. Instead, in today’s USA, I think, racism and anti-Semitism and all sorts of hateful speech have been normalized. I can’t let the episode go if there is any suspicion that my son, however unwillingly, contributed to the atmosphere of pervasive racism. I want to explain. But what will I say? Even for parents of spectrum kids, it’s so hard to understand what would prompt a boy from an Hispanic household, whose parents speak out for equality and intentionally seek relationships outside their own community, to make seemingly racist comments that he doesn’t even mean. To explain that to a person with little experience with autism, to whose own child one of these comments may have been directed? I don’t even know where to begin.

Double the Population, Triple the Population, Nowhere the Resources

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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.”

The A-ha Moment: Part III

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An old friend texted me, asking a favor. The two-year-old son of one of his law partners was just diagnosed with autism. Would I consider having lunch with the man, share with him our experiences?

No problem, I responded. The school/services/therapy side, or the biomed side?

Friend texted: “I told him about the dietary approach you took. Don’t know if they’re ready for that level of discipline but would be good for him to hear.”

“Dietary approach.” Love it.

I texted: “Over the years I’ve learned to approach the newbies gently, and tell them only what they’re ready to hear (plus maybe a little more).”

I have these types of meetings from time to time: friend-or-a-friend arrangements during which, depending on the direction the conversation takes, I tap, nudge, or shove the parents in the biomed direction. “Absolutely,” said Adrian, when I told him about the arranged lunch. It was one more opportunity to show our gratitude for Martin’s recovery thus far—that is, to imagine what our lives would be like today if we still had a son who postured because of gut pain, could not sleep unassisted, and neither acknowledged nor seemed to recognize his own parents.

Six years ago, I wrote about how my family got into biomed, in a series of three posts titled “The A-ha Moment.” Part I described our first realization that autism is medical and recovery may be possible. Part II told how a business contact of Adrian put us in touch with another contact whose wife, Annie, had recovered their son and was willing to talk to me. (A more precise description would be: “whose wife had recovered their son and was willing to spend a ton of time (seriously, an hour to start, and then hours more in follow-up) on the phone with me.”) Part III narrated—

Well, holy crap. In reviewing my blog in order to write this post, I’ve just realized that I never wrote “The A-ha Moment: Part III.” Me acabo dar cuenta de que soy una idiota. I thought I wrote it. I was sure I wrote it! Evidently, I never did. (In my defense, six years ago, I slept very little.) This situation must be remedied. I’ve rummaged through my home office and found the notes of the conversation back in January 2011 on which I intended to base Part III. Without further ado, I present The A-ha Moment: Part III:

The background. “You’ve got to talk to Betty [a pseudonym],” said my then-sister-in-law after Martin was diagnosed. “Her son has autism, and he’s doing amazing.”

I’d met Betty once, ten years earlier at my brother and sister-in-law’s house, when she and her husband brought over their two kids, a girl of about four and a toddler boy. I remembered the boy only vaguely. He’d run around and got into everything, like toddlers do.

I asked my sister-in-law to put me in touch with Betty. We scheduled a phone call, which took place the day after Annie had told me about recovering her son biomedically.

The conversation. I opened the Betty call by explaining that our son was undergoing formal diagnosis but that it was clear that he had autism, and that although we already had him in Early Intervention with ample therapy, we thought there was more we could do, medically.

“Oh, I’m probably not the best one to ask about that side of things,” Betty said. “We didn’t go in for the diet-and-supplementation stuff.”

No?

Betty explained that they had started biomed with their son—which, subsequently, I realized was kind of amazing, because this would have been years earlier, and everything was still pretty cutting-edge even when we started with Martin—but had given up quickly. “The diet was impossible. It just got in the way of all our family activities,” Betty said. Nevertheless, Betty assured me that, despite doing only traditional therapies, their son, now eleven years old, was fine.

Really? Tell me more. I was under the impression that a biomedical approach was necessary to really make progress.

Nope, Betty said. Her son was in a mainstream classroom.

That’s great! How does he relate to the other kids?

He’s able to do the assignments, except when the students pair up or work in groups. He’s not able to work cooperatively, so they let him do those activities alone.

Does he have friends?

Not really. He has one friend. They do a lot together. He doesn’t have any other friends. But he doesn’t care, so why should I? In social situations, he tends to isolate himself. When we’re going to be around other people, we let him bring a portable disc player and earphones to watch a movie.

He’s healthy? He sleeps and eats well?

Yes, he sleeps! No problem there. But his diet is terrible. He has food aversions. I have to send pretzels and potato chips for his school lunch every day, just to make sure he eats something. I feel like people think I’m a bad mother. He loves crunchy texture and salty flavor.

Sports?

No. No sports.

After-school activities?

Video games.

Readers, I’m sure you can imagine that by this point in the conversation I had decided that I did not like Betty’s version of “fine.” The picture she was so dire that I began to doubt my previous call with Annie, who told me about recovering her son. I thanked Betty for her time and insights. She concluded by reminding me that her son was fine and letting me know that my son would also be fine.

The follow-up. As soon as I hung up with Betty, I got back on the phone with Annie. Could she clarify? I asked. When she said her son was “recovered,” what did that mean? Was he quirky? A little bit off, in terms of social skills? Unwilling to eat regular foods, maybe? No, Annie answered. He’s recovered. He looks just like other kids. No one in his current school knows he ever had autism. He plays guitar in a kid-band with his friends. He likes sports.

I continued to press. There must be some difference? Annie seemed to think. Finally she said, “Sometimes when he’s playing basketball and it’s really noisy, he gets a little spacey and I feel like he could pay attention better.” That was it. That was what she came up with. The difference between her son and other children was that sometimes he got a little spacey on the basketball court.

The A-ha Moment, Part III: Behavioral therapy offers fine. Biomed offers recovered. We decided to aim for recovered.

Addendum. It’s not entirely correct to say I never wrote Part III. In a November 2011 post titled “Friendships,” I did reference what occurred in The A-ha Moment, Part III. I wrote: “Another parent once told me, about her eleven-year-old son on the spectrum, ‘He doesn’t have friends except for one. But if he doesn’t care, why should I?’” That came from Betty, about her son who was fine.

Back to 2017. Last week’s lunch with my old friend’s law partner, though peppered with discussion of special-needs preschools and CPSE meetings, steered decidedly in the biomed direction. The man asked science-y questions, which I did my best to answer, and listened to my many self-deprecating observations that began with, “I know this probably sounds a little crazy, and if ten years ago, I’d met today-me, I’d think I was crazy. But I’ve learned a lot about health, the immune system, and how seemingly psychiatric conditions can be tied to the gut . . . .”

Two afternoons later, at Martin’s social-skills playgroup, a mother new to the group overheard another mother and I talking, and asked, “What do you mean, ‘biomed’ and ‘neuroplasticity’? I’m not familiar with any of this.”

I paused, wondering whether I should proceed. Then I said, “This is probably going to sound crazy . . . .”

Ultima Actualización de Nicaragua: Diagnóstico

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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.

Actualización VI de Nicaragua: Un Projecto Comunidad

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We’ve returned, reluctantly, to the States, and I’ve got some time to reflect on the Nicaraguan experience.

I think one reason that Martin felt so at home in Nicaragua—one reason that we felt so at home in Nicaragua—was that Martin seemed to become almost a community project, among both the ex-pats and the Nicaraguans with whom we interacted.

Martin loves to zip-line. We had two adventure parks near us. The first park created a “good-customer discount” for Martin: As long as someone accompanied him, Martin participated for free. The second park held a staff meeting and decided that because Martin is un niño nervioso—an “anxious boy”—he should receive 30% off all adventures, so he could build his confidence through outdoor activity. Martin’s favorite seafood restaurant served octopus with dairy-based garlic sauce. Martin loved the octopus, so the kitchen workers took it upon themselves to create an oil-based garlic sauce just for him. Waiters, gatekeepers, and cuidadors went out of their way to greet him. A local surf shop, owned by a German national, outfitted Martin with a collection of its beach wear, for free, on the basis that having a cool look would help Martin feel good about himself. We didn’t ask for these accommodations. They just happened, because, apparently, un niño nervioso needs a boost now and then.

And in Nicaragua there was never a question about whether Martin could accomplish something, just how to go about it best. I volunteered to send Samara to day camp with Martin, as a sort of helper/aide. Not necessary, the directors told me the first week; he was doing fine independently, they said, and Samara would coddle him too much in front of the other kids. “Would you let me teach your son to surf?” asked one of my coaches at the local gym, also a surf instructor. “If he can ski and skate, I know he can surf.” The third-and-fourth-grade teacher at the international school encouraged me to consider enrolling Martin there. She said, “My background is in special education. I know he’d fit right in, in my classroom.”

Once, when we were out to dinner, Martin asked permission to leave our table and eat with a half-Nicaraguan friend, Alejandro, and Alejandro’s American grandfather. (Martin had his iPad, and the boys decided to play Minecraft together.) The next day I encountered the grandfather and struck up a conversation. “You might have noticed Martin has some social challenges. I hope he and Alejandro weren’t too much of a handful at dinner.” The grandfather responded, “Oh, really? Funny. After your family left the restaurant, I said to Alejandro, ‘Did you see how Martin always extends his hand and introduces himself? You should learn to do that’.”

I was tickled pink.

Not that everything Nicaraguan was perfect. The day camp, with its week-to-week enrollment, had regular turnover, and the second week Martin experienced some pretty intense bullying. I witnessed it myself: At drop-off one morning, at the local park, Martin said hello to a group of five kids. One by one, those kids picked up their backpacks and moved to another area, without acknowledging Martin. Appearing confused, Martin followed them and said hello again. The oldest boy, without looking at Martin, said, “I see something really interesting over there. It’s a tree. I’m going to see the tree,” and left. The other kids promptly followed. Martin, realizing he’d been rejected, climbed onto a swing, alone. When two pick-ups arrived to shuttle the kids to the camp, these kids piled into one truck’s bed—safety advocates, I know! but when in Rome . . .—then blocked Martin from getting in, telling him that all the spots were reserved for their friends. I was standing nearby, so I said, “I don’t think you can reserve the spots. Let Martin sit.” A girl in the bullying group, about seven years old, looked me directly in the eye and said, “No, we can do whatever we want.” (I was taken aback. I don’t know any child who would speak that way to an adult, much less an adult who is a stranger to her! This girl, dear readers, was simply a brat.) I contacted the camp directors the same morning, and fortunately, they jumped on the situation immediately. By Friday afternoon, Martin was calling the bullying group’s ringleader “a kid who wasn’t kind to me at the beginning of the week but then got nicer.”

Taekwondo didn’t work out so well, either. Martin does taekwondo in the States. It’s a gentle program, with three or four instructors for the 45-minute classes and a series of ten belts, which are earned for learning sequences of kicks and punches. Taekwondo in Nicaragua, at the only dojang in town, was serious business: two-hour classes, one master for more than twenty students, four belts awarded at the master’s discretion, and sparring for everyone. Martin couldn’t follow and shied from kicking and being kicked; he’s not ready to spar. The master didn’t seem to understand when I explained Martin’s challenges and often seemed annoyed or frustrated with Martin. Halfway through the summer, when Martin asked if he could “maybe stop doing taekwondo until we get home,” I agreed.

Fortunately, isolated bullying and advanced taekwondo didn’t ruin an amazing summer, or the perception that our Nicaraguan community was rooting for Martin’s success. In the States, I have that perception from the autism-recovery community—but not much more widely.

Martin didn’t accept the offer for surf lessons, I should mention. He says he’ll try surfing next summer. Because we’re going back to Nicaragua next summer. Was there any doubt?

Legislative Commentary. Sorry, Not My Usual Thing, But This Deserves an Exception

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As promised in yesterday’s post about medical marijuana, and with permission, I’m posting the testimony of my friend Victoria Grancarich. This testimoney will be given before Minnesota lawmakers this September. Victoria’s circumstances are very different from mine, as her son’s place on the spectrum is far from Martin’s. But this epidemic is all one spectrum. We stand in solidarity with each other, and root for what helps any child.

Victoria’s 14-year-old so, Julian, is profoundly affected by autism. Victoria and her husband, John, have truly scoured the ends of the Earth to help Julian and have made progress healing his mind and body. Nevertheless, several years Julian threw himself from a balcony, breaking his back and both his legs. With the onset of puberty, Julian’s self-injurious behavior escalated to the point that he needed constant restraints and protective gear to avoid beating himself into concussions. Victoria and John believe medical cannabis saved their son’s life. As a friend and observer, I agree. In my opinion, to deny marijuana to Julian would be abuse. Yet, this medication was available under Minnesota law only because Julian also suffers from seizures; if he suffered from self-injurious autism but not seizures, the marijuana option would be unavailable. Victoria offers her testimony in an effort to have the law changed and make medical cannabis available to all Minnesotans in need.

My name is Victoria Grancarich. I’m the mother of a 14-year-old boy named Julian. Julian has severe Autism and a seizure disorder. Julian began having seizures in June of 2011. We have tried many medications over the last six years; however, seizures and motor tics continued to be an issue.

Julian had always been a kind and affectionate boy in his younger years. When Julian turned 13, the onset of puberty brought new challenges. In February of 2016 Julian became extremely violent toward both family and school staff. He began raging daily and would physically attack us. It got to the point where we as his family needed to wear protective clothing to avoid being bitten, having our hair pulled, and being kicked and punched. His younger sister could not be in the same room, and she had to spend all of her time at home locked in her room for her own protection.

In August 2016, Julian began to turn the violence on to himself. He began punching himself in the head full force thousands of times per day. He would use his knee to injure his teeth. He would bang his head into walls. We were powerless to stop him. We were trying to protect him using helmets and arm immobilizers, and at times we had to physically restrain him for hours at a time to keep him from harming himself. We believed our son was in terrible pain and was suffering from debilitating headaches. We saw this once vibrant boy lose his will to live. He seemed determined to end his life and came close several times. Between October 2016 and January 2017, Julian was hospitalized three times. He suffered self-inflicted skull fractures and massive tissue damage. He had black eyes and giant hematomas on his skull regularly. The hospital staff offered psychiatric medications as well as gabapentin but nothing could stop the daily rages that lasted every moment that he was awake. I felt certain that if we could not get Julian cannabis that he would find a way to end his life.

Julian qualified for cannabis through the state program because of his seizure disorder. After being sent home from Children’s Hospital in Minneapolis after another life threatening episode of self-injury with no plan in place to heal our son, we felt cannabis was our only hope. The excruciating pain our son was in was getting worse and we knew no pharmaceutical medication could help him. We had tried everything the doctors offered and had absolutely no success.

We enrolled him in the Minnesota Cannabis program in January 2017. Within a week of beginning cannabis therapy Julian was able to go about an hour without harming himself. As the weeks went on and we reached a therapeutic dose Julian’s behaviors began to slowly melt away. By early March he was smiling again. Within six weeks of beginning cannabis Julian was no longer injuring himself or others. He began to take an interest in his life again. He returned to school full time. We were able to remove his helmets and protective gear. By mid-March we were getting smiles and hugs. Julian began to go outdoors again by mid-April. By May Julian began to show interest in using augmentative communication for the first time in his life.

It is now late June. We have not seen one episode of self-injury since early March. Julian has not struck me since February. Julian is enrolled in a day camp for children with special needs where he spends eight hours a day. He is exploring outside and making friends. He is happy and smiling. Julian and his sister have a relationship once again. Julian spends hours in our back yard enjoying bouncing on his trampoline, moving his body and taking in fresh air. He lives safely and happily in our home. He is free from pain. His seizures and motor tics are well managed to the point they are not interfering in his daily life.

Cannabis gave us our beautiful son back. Julian Grancarich is alive and well today because of this miracle medication.

I’m Ignoring Politics by Writing a Wistful Post Instead

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Last weekend we went skiing at Jiminy Peak with Martin’s friend Bobby, his neurotypical brother Adam, and their parents. Martin and Bobby took their ski lessons with Stride Adaptive Sports, a terrific organization similar to the National Ability Center, our Utah mainstay.

Monday morning (no school, for Dr. Martin Luther King, Jr. Day), I retrieved Martin after his lesson and chatted with the instructor.

“Your son is an absolute pleasure to work with,” the instructor said. “He’s so talkative. He could be a New York City tour guide!”

That cuts both ways. Martin is obsessed with trains and landmarks, and the location of both. “Mommy, the Chrysler Building is north of the Empire State Building. The Empire State Building is on the same road as the entrance to the Queens-Midtown tunnel. The bottom of Central Park is where Midtown becomes Uptown.”

I said, “Thank you. We’ve worked really hard on his speech and language.”

“Saturday, I had two lessons with boys who were basically non-verbal.” The instructor shook his head. “I just couldn’t break through to them.”

It’s hard to convey the tone the instructor used when he said he “couldn’t break though to them.” He wasn’t speaking scornfully, or with pity, or even with sadness. It was more like he was disappointed in himself, and wished the situation had been otherwise.

I started to say, “I understand.”

But I stopped myself.

Because I can’t understand. Not any of this mess.

All That Could Be

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A former work colleague, now a friend, messaged me the piece on a Rhodes Scholar with autism. This friend has a brother with autism and a son with severe anxiety troubles, and she knows that Martin has autism. (She may or may not know that, really, Martin had autism.) About the Rhodes Scholar, she wrote simply: “Love this.”

I responded:

I love it, too. But I also don’t love it.

A story like this is terrific because it reminds people that ability does not depend upon behavioral factors, and that awkwardness or perseveration are often just covers for awesomeness! Also, it’s a powerful message to go out and achieve, without excuses.

On the other hand, celebratory and feel-good stories tend to normalize autism in a way that I find unproductive. This is what feeds the “neurodiversity” movement, the idea that neurological variations just happen, and we need to stop trying to “correct” neurodivergent behavior. It’s like, If you can be autistic and a Rhodes Scholar, why would you not want to be autistic?

I don’t support neurodiversity or the feel-good approach to autism. What’s also going on in this story is that a mother had to sacrifice her own career (in toto) and personal success in order to give her son this opportunity. And that this young man, an Oxford-bound college graduate, cannot live independently and perhaps never will. And that he needs a service dog to assist with interactions, and that it’s unclear whether he’ll achieve the depth of interpersonal relationships that lead to marriage and the sustenance of enduring friendships.

I guess that seems like a pretty bleak view. My view of persons on the autism spectrum is blindingly bright. They achieve so much despite struggling with issues that the neurotypical cannot, truly (I include myself), fathom. My view of autism itself, however, is negative. “Autism” is the symptoms of underlying health and immune disorders that can, and should, be treated. In terms of the young man profiled in this story, I would suppose that autism may have given him the (perseverative/obsessive) focus to acquire vast amounts of facts/knowledge. But that amazing brain of his would have been present and functional even without the autism—and perhaps he could have become an independent Rhodes Scholar who will miss his family and girlfriend and football buddies during his years in England. And perhaps his mother could be practicing medicine and available to help others, free from the monopoly of her son’s needs.

I am 100% sure this is more than you wanted to hear this morning! It’s a topic I feel so strongly about that sometimes I can’t help myself. The way I look at it is this: Autism was never an essential part of my son, and it’s not an essential part of anyone on the spectrum. It’s an imposed condition that can be alleviated or eradicated through the right biomedical treatment (though not always, not by a long shot). My son is witty and charming. He’s going to go to Princeton or maybe Yale, and he could well end up a Rhodesie, if he doesn’t decide the Marshall Scholarship or a Fulbright is a better fit. I’d prefer if he does all that without the burden of autism.

Does that make sense? Honestly, it’s hard for me to write about these things because I worry about offending others who are touched by autism, which as time goes by is more and more of us. I’ve got a “love the sinner, hate the sin” relationship with autism, albeit in foggier terms. I admire the person—and could do well enough without the autism.

I sent the message off with trepidation, almost chagrin. I like this friend. She’s never been anything but kind, and I feared insulting her. It is so tricky, to discuss recovery with an autism family member who’s not pursuing biomed. I would never want to suggest that anyone else is providing inadequately, or has to be doing biomed, or anything similar. We all do what we can.

I hope she responds well.

Three Drugs, Maximum Dose

Posted on by findingmykid
4

I play in a softball league for local women. We have four teams, comprising mostly moms in their 30s and 40s. It’s fun.

At one practice, a few of us were discussing Martin’s move from a private self-contained, special-education setting into our local school. (I’m so anxious. I raise the topic with anyone who knows anything.) I said that my son—no one on the team knows Martin—has ADHD and language delays.

Someone asked whether we’d considered the district’s own self-contained, special-education classroom for Martin. I said that we’d observed that classroom and liked the teacher but (1) we didn’t see any advantage to moving from one self-contained setting to another, and (2) our district representative wasn’t sure Martin would fit well with the students in the self-contained classroom. I worded the second point carefully, so as not to suggest that the class was behind schedule, or that Martin was “better” than its students, in case any mom present had a child in that classroom.

And indeed, one mom did have a child in the district’s self-contained classroom. She started talking about her son. She said that they’d considered trying to switch him to general education with an aide (that’s what we’re doing for Martin) but felt that the move from a 12-student-or-fewer classroom to a 20-student-or-more classroom would be too much for him to handle.

We have the same concern for Martin, I told her. I’m wondering how this year is going to go.

“I’m sure it will be fine,” she replied. “It wouldn’t work for my son. My son’s ADD is so bad.”

I’ve seen this woman’s son. He comes to watch our practices and games. To me, he looks absolutely typical.

I said, “Academically, attention is our main concern, too. Martin has so much trouble paying attention.”

“Not like my son,” she said. “Seriously, once my son even had an autism diagnosis. Now he’s on absolutely the highest dose of every medication he takes.” She named three pharmaceuticals, none of which I recognized. “For every one, he’s got the highest dose they allow. Based on his body weight, they won’t even let him take more. That’s how much he needs, just to pay attention.”

As she spoke, I grew uncomfortable. First, the way she said “autism diagnosis” conveyed, “You can’t even believe how bad his condition is.” I abhor “autism” being used as a synonym for “territory you don’t want to be anywhere near.” Last year I helped a special-education acquaintance request a neurodevelopmental psychiatric evaluation for her son. When I asked later how it went, she (despite knowing Martin’s then-diagnosis) replied that she hadn’t completed the exam because, after only the first session, the doctor said her son didn’t have autism. “That’s really what I needed to know,” that mother told me. “I mean, thank God, at least he doesn’t have autism.”

Second, as I’ve written before, I can’t say that we will never allow Martin to use a pharmaceutical to address his poor attention span. For example, if we get to middle school and a pharmaceutical can make the difference between fully mainstream and still being pulled from the classroom, maybe we will try the pharmaceutical. (Maybe.) That being said, the thought of an eight-year-old child, like softball mom’s son, taking a variety of drugs to alter his brain chemistry turns my stomach—especially because the family doesn’t seem to be making any attempt to address overall health. Every time I see the boy, he has goldfish crackers or an ice-cream cone or an artificially flavored popsicle or even a soda pop in his hands.

Third, softball mom’s comments were tinged with—I don’t know—pride, or bragging. She sounded like we were trying to outdo each other: My son has so little attention span that he needs three drugs, maximum dose. Can you top that? I suspect that, if we ever compared our children, I could top even three drugs, maximum dose. But who on earth would want to play such a game?

Sitting quietly and typing my blog, I can expound the three reasons her comments disquieted me, and come up with the kind of helpful response I could have given, something like, “I’d really like to hear more about your experience with the self-contained classroom. Can I give you my number so maybe we could grab coffee?” or maybe even, “We’re always looking for new friends. Do you think your son would like to do a play date sometime?”

On the softball field, however, I panicked, confounded as usual, nothing productive to offer. I said only, “Wow, it sounds like you’ve really got your hands full!” and hoped she would change the subject.

For ahen these situations arise, I’ve got to find some middle path that is neither my opening monologue to the biomed revolution nor a throw-away comment to move the conversation along. Regardung my veganism, I’m able to thread the needle; I respond honestly but non-graphically to any questions (no one wants to hear about factory farming at the dinner table) without pushing an agenda. What is the biomed equivalent? How do I gently suggest that a non-pharmaceutical option is available, without affronting or appearing judgmental?

Suggestions welcome.

Recognized, and Happy for It

Posted on by findingmykid
2

My law school roommate lives an hour or two away. As the crow flies, her home is probably 40 miles or so from mine, but New York City lies between us, with all the convoluted traffic conjuring the metropolis requires. She and I meet occasionally for lunch, in Manhattan, but it’s rare that we bring our families together.

This Saturday she and her husband came over with their three kids, a girl about Martin’s age and two older boys. We barbecued and swam. The kids played. They stayed about five hours.

That evening, I received this email from my erstwhile roommate:

It has been a few years since I last saw Martin (or should I still call him Tin Tin?), so I didn’t know what to expect. I didn’t know if he would still be the little boy I remember from a few years back or if he would be completely different. Well, he is still the cute and sweet little boy I remember but he has also grown into a wonderful young man, so friendly, courteous, and fun! If I did not know from your blog posts that he has struggled with language and communication, I would not have guessed it. Martin was such a gracious host to my kids (who are not the most friendly outgoing type) and was actively engaging them. (He was asking Nathaniel if he preferred to be called “Nathaniel” or “Nate.” He was also calling to Mieko to come swim.) He was so expressive and easy-going and super nice to be around!

I know that today was just one day in his life and there must be other days when things are not so great. I can’t help but to think of all those sleepless nights, all the cooking and food shopping, traveling to doctors and therapists, and the worries and heartaches you endured. But I think you have soooo much to be proud of!!! Your unwavering faith in your child and your strength to guide him, even in the face of uncertainty, have made a world of difference.

Congratulations on achieving an important milestone! I am sure that the next chapter in his life will be an exciting and rewarding experience with new friends and new achievements.

The “important milestone” to which she refers is Martin’s upcoming switch from self-contained special education to general education.

I’m grateful and fortunate to report that I often receive compliments about Martin. This wasn’t even the first very cool email I’ve received from my law-school roommate.

The email quoted above, however, is different, and blog-worthy. In it, a parent of typically developing kids recognizes not only Martin’s growth but also the struggle it has taken to achieve that growth. This was so meaningful to me. Biomed parents know what happens behind the scenes. Biomed parents understand why I had to give up my former career, and they are sure I’ve cleaned poop smears, endured consecutive days without sleep, and snuck into bathrooms to cry. Parents of neurotypical kids, on the other hand, no matter how supportive, tend to overlook what autism recovery actually entails.

Before our guests left yesterday, my former roommate also said that I looked healthy. She said I seemed less exhausted and less burdened than I have since Martin was diagnosed.

When I asked later whether I could reproduce her email here, with the identifying information changed, she replied, “Sure, go ahead and use it on your blog. And you can remove any identifying information such as how beautiful and charming I am.”

Nice try. I will spite her by reporting to my entire (vast, vast) readership that my law-school roommate is beautiful and charming.

Which I suspect you already guessed.

IMG_3496

Martin enjoying homemade ice cream on our back deck, with the children of my law-school roommate.