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.”

The A-ha Moment: Part III

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 . . . .”