"I have yet to see meaningful answers that help our family": A mother speaks out on severe autism

By Alicia Mesa

The author and her autistic son, Pablo.

The author and her autistic son, Pablo.

My son Pablo, we call him Pablito, has a mischievous smile and a great love for music (he's partial to country music and Spanish pop). He also has an autism of the most serious kind.

At 17 years old, he remains nonverbal and locked in a cycle of self injury so severe he needs to wear limiters on his arms to prevent him from hitting himself with too much force, and a helmet to prevent brain injury from hitting his head on hard surfaces (he goes for the hardwood table, granite counter tops, door-frames, or any hard surface he can find).

He requires intensive round-the-clock care, usually involving two or more caregivers at a time. Things like getting him to eat, showering him and brushing his teeth are extremely difficult. It takes me a good 30 to 40 minutes just to work up the courage to shower him, as he engages in self-harm and aggression for the duration of the shower. Getting him to eat a meal often takes over an hour. We also recently found out he has GI issues, which may be causing pain and exacerbating these behaviors, and we hope we can at least address those. We have not found any intervention that has provided meaningful improvement in his dire condition. Last year, TEN different ABA agencies refused to provide intervention services to my son due to the level of specialized care he requires. 

“Unless you live with someone like Pablito, you cannot understand the suffering of that individual, or the crushing responsibilities imposed on family members.”

Unless you live with someone like Pablito, you cannot understand the suffering of that individual, or the crushing responsibilities imposed on family members. The entire family suffers. A simple errand like running to the grocery store to pick up a carton of milk requires a Navy-Seal-like level of planning. To be honest, when I don't have help at home I sometimes wonder if I can survive another day.

I'm also left with a million questions. I want to know what went wrong with his brain development. I want to find treatments that can ease his horrific suffering. I want to know where he can live when we can no longer care for him. I want to know if his two typical siblings have increased risk for bearing children with autism. After years of asking these questions, I have yet to see meaningful answers that help our family.

When I heard about the formation of the National Council on Severe Autism I felt a flicker of hope. Finally, an organization that takes seriously the devastating toll caused by severe autism. Our autism is not the quirky college professor or accountant, or other people who can function day to day. What my beloved Pablito suffers has absolutely nothing in common with what others call "autistic." And it's horrifying to see the word autism trivialized like this condition is some sort of choice or natural variation, when obviously in cases like ours it's a disability of the most extreme nature imaginable. 

“We are too busy, too broke, and too tired to even raise our hands and engage in the conversation. But I will support the NCSA and its efforts to shine a light on the world of severe autism.”

I can’t drive to Sacramento or fly to DC to advocate for my son's needs and shine a light on our plight. We are too busy, too broke, and too tired to even raise our hands and engage in the conversation. But I will support the NCSA and its efforts to shine a light on the world of severe autism, and help bring fresh answers for our families. I cannot sugar-coat this: families like mine are desperate. Romanticizing autism has got to stop. I love that NCSA will never trivialize our reality, or invalidate our pain.

Alicia Mesa is the mother of three children, one with a severe form of autism. She and her family live in Freedom, California.

A Voice from the World of Inpatient Hospitalization

VOICES FROM THE FIELD. This is the first in an occasional series featuring stories and perspectives from the world of severe autism.

By Lee Wachtel, MD

Lee Wachtel, MD

Lee Wachtel, MD

On the first floor of the main building of the Kennedy Krieger Institute, locked double doors provide access to the Neurobehavioral Unit, a pediatric inpatient unit dedicated to the evaluation and treatment of severe challenging behaviors. Approximately 75% of the sixteen children, adolescents and young adults hospitalized here carry a diagnosis of autism, with the remainder possessing a range of other neurodevelopmental disabilities. The vast majority of the patients have comorbid intellectual disability; it is the rare exception to have a child with normal cognition. Many of the patients are non-verbal, rely on alternative and augmentative communication systems, or have limited to no functional communication.  Some have comorbid genetic syndromes and medical conditions, ranging from seizure disorders, gastrointestinal conditions to vision or hearing impairment. All have failed multiple treatment initiatives at lesser levels of intensity, often over the course of months to years. 

As I frequently explain to reluctant insurance reviewers, none of the youth are admitted for treatment of autism or intellectual disability. If I had a cure for that, I usually suggest that I would be sunning myself in Tahiti, rather than pleading for coverage of very expensive treatment addressing highly challenging, yet eminently treatable, behavioral and psychiatric pathology that happens to occur at pretty high rates in autism and leads to some devastating situations for my patients and their families. Third party carriers often try to deny coverage for my patients claiming that they do not meet “classic psychiatric inpatient criteria,” as they are not psychotic, homicidal or suicidal, and that “anyways they’ve been like that all their lives and you can’t really change it.”

So I attempt to explain that au contraire, the non-verbal autistic child with severe intellectual disability who detached a retina last month from hand-to-head self-injury, now has an oil bubble and scleral buckle in the back of his eye and could become permanently blind if he continues the behavior, the 6 foot plus, 220 pound autistic teenager without any home or community services who beat his mother so badly that she required hospitalization, or the cute little autistic boy who moves like the Roadrunner, swallows everything in sight and has had multiple items surgically removed from his stomach by Pediatric GI, actually are desperately clinically appropriate for inpatient admission as they are at imminent risk for severe, and at times unfathomable, harm.

If you push me, I might share what happens when an injured eye goes blind, how it shrinks and becomes painful, ultimately requiring surgical enucleation with either placement of a scleral shell, or stitching the socket shut. . . because I have sat in the ophthalmology surgical waiting area with a family whose autistic daughter experienced just that, a family where the father bought his wife a very expensive, professionally painted scleral shell for Mother’s Day, because that was all the mother wanted for her daughter.

I don’t work in a world of neurodiversity where autism is embraced and cherished. Most of the parents on the NBU would be tempted to let loose a barrage of expletives if suggested that their child’s autism is a gift. Make no mistake, ALL of the parents love their children beyond words, and have typically moved heaven and earth in order to gain admission to the NBU, but few like autism. As one parent informed us, “I love my son more than anything, but I hate autism.” Why is this so? In a world of autistic individuals playing the piano at Lincoln Center, giving speeches at high school graduation and moving on to university, how could one not be actively celebrating the unique gifts of each autistic individual? 

The cold, hard facts of the matter are that for many children with autism and their families, every day (and often every hour) is a struggle. As I am so poignantly reminded every time a youngster screams, bleeds, vomits, cracks his head against the wall, slaps, hits, kicks, bites, receives related emergency medical services, pees in the toy bin or wipes feces on the wall, there exist many individuals with autism who suffer from very severe comorbid behavioral and psychiatric pathology that have brought their lives, and the lives of those who love them, to a grinding halt. Survival is the overriding goal.

As much as we might like to believe otherwise, people with autism and intellectual disability do have a higher risk of behavioral and psychiatric disturbance than the general population. This has been demonstrated multiple times in the international medical literature. Honestly, I’ve never quite understood why this is something to hide or of which to be ashamed: if we can talk uninhibitedly about increased seizure risk and sensory needs in autism, why is discussing behavioral and psychiatric pathology taboo, or discriminatory? Certainly the last thing needed in the autism community is more fallout from mental health stigma. 

Honestly, I’ve never quite understood why this is something to hide or of which to be ashamed: if we can talk uninhibitedly about increased seizure risk and sensory needs in autism, why is discussing behavioral and psychiatric pathology taboo, or discriminatory? Certainly the last thing needed in the autism community is more fallout from mental health stigma.

But having spent the past fifteen years of my career working on the NBU, I have repeatedly seen how these patients have become the unspoken black sheep of the autism community. Few wish to consider their needs as children, and even less so when they become adults (despite the fact that said children will spend many more years as adults). Judging from the several hundred annual NBU applications and our 100+ patient waitlist, their numbers aren’t insignificant, either. Sadly, wait time for appropriate services is usually directly proportional to the severity of behavioral and psychiatric pathology, with the kids I affectionately refer to as the “heavy sluggers,” ie. the bigger kids who can pound themselves or caregivers into bloody oblivion in seconds, waiting the longest, and sometimes never receiving help. Few psychiatrists, neurologists or developmental pediatricians are trained and equipped to safely and efficaciously manage severe behavioral disturbance in autism. Emergency rooms are afraid, and honestly tell desperate families that they have nothing to offer, and to please not come anymore. Most standard inpatient psychiatric units won’t touch highly aggressive and self-injurious autistic patients with a 10-foot pole, and similarly balk at the mere mention of “autism,” even if the reason for admission is severe depression, psychosis or suicidality, reasons for which any other American could be treated in a hospital!

Emergency rooms are afraid, and honestly tell desperate families that they have nothing to offer, and to please not come anymore. Most standard inpatient psychiatric units won’t touch highly aggressive and self-injurious autistic patients with a 10-foot pole, and similarly balk at the mere mention of ‘autism.’

A handful of inpatient units exist across the United States that serve a similar population to the NBU, although my unit is fondly recognized as the end of the train line. Access to other units is also highly limited, and varies widely according to state of residence, age and third-party payors. Many beds are accessed by families “camping out” in the local emergency department for days to weeks until a bed becomes available, with the child often physically and chemically restrained to maintain a minimum of bodily safety. Never mind that if a family chooses to not move into the ED and await a bed (a common circumstance as most parents must work to pay the bills and take care of other family members) insurance might later deny admission, stating that clearly inpatient care is not warranted if the child has “just been waiting at home.”

One of our patients waited nine months in a modified Plexiglass room in the ED, was fed meals through a slot in the wall, and bathed only a handful of times. A truly tragic situation, but one that was quite understandable given the high volume of highly-trained staff and extensive behavioral and psychotropic interventions ultimately required to bring this young man back to better health. 

These patients and those who love them deserve a strong voice in the autism community. There is only so much advocacy they can pursue, as the youngsters do not have the cognitive capacity to advocate for themselves, and their families have their hands full just keeping them safe and getting from one day to the next. They are exhausted. As one parent so aptly told me about 24 hour caregiving “it’s like being a world-class athlete, you have a limited shelf-life.”

I have heard countless talks where people claim that every autistic individual has a voice, can make choices and be included, and if he isn’t included, its society’s fault. I wish that was true, but it’s simply not, because not everyone with autism functions at such a level. It’s like saying that everyone with hypertension can be managed with diet and exercise alone; they can’t, because some people’s biology simply won’t allow such. You can’t trump biology, and biology has placed some people with autism – many more than the autism community would like to recognize – at the very severe end of the spectrum. An Afghan refugee family once asked me if their autistic child could be cured with a brain transplant – a very innocent question from people who had fled the Taliban in an empty petrol truck over the Khyber Pass and had limited exposure to Western medicine – and sadly I had to explain that we just can’t yet change the brain with which a person is born. 

You can’t trump biology, and biology has placed some people with autism – many more than the autism community would like to recognize – at the very severe end of the spectrum.

The same family told me that had they remained in Kabul, their aggressive autistic son would likely have been removed from the home by the authorities and left to die in the wilderness.  I’ve heard similar stories from colleagues who have been in Africa, as well as those who worked in Eastern European mental health institutions prior to the fall of the Iron Curtain. Terror and poverty don’t seem to lead to good resources and opportunities for anyone, let alone the most vulnerable.

I do, however, firmly believe that society is judged by how it treats its most vulnerable citizens, and the US is in an economic position to better serve those with the greatest needs. Individuals with severe autism whose behavioral and psychiatric challenges reach severely life-limiting proportions must be served with just as much vigor and dignity as those on the higher-functioning end of the spectrum, and their needs cannot be brushed aside. I “get it” that no parent with a toddler newly-diagnosed with autism wants to imagine that he won’t become a scientist or performer, and that high-functioning autistic self-advocates don’t want to acknowledge that some individuals with autism cannot make any choices beyond what to watch on their iPads or flavor of ice cream to eat. But as I often remind my own children, you don’t always get what you want, and you can’t stick your head in the sand and ignore an entire group of people simply because their needs aren’t necessarily pleasant to consider and don’t fit your agenda.

And if the autism world wants support and understanding in considering how an autistic student could be supported to succeed at university, or enjoy a city’s day spa despite the sounds and lights, then it cuts both ways, and you must show care and regard for the other end of the spectrum, and work actively to find viable solutions to better their lives as well.

Lee Wachtel, MD is physician based in Baltimore, Maryland.