Diagnose and Adios? Autism Families Deserve Better

By Bryna Siegel, PhD

Bryna Siegel, PhD

Bryna Siegel, PhD

For families living in urban or suburban areas, most of the testing to determine whether their child might have autism usually takes place in a university or other specialized clinic. Parents often are waitlisted for weeks, even months, following a pediatrician referral. Meanwhile anxiety increases, especially as ‘Dr. Google’ constantly reminds parents that early intervention is going to be critical if their child does have autism.  

As appointment day approaches, many parents are asked to fill out numerous questionnaires, or to participate in research in case their child is diagnosed with autism. On the day of the appointment, there can be more questionnaires while children are whisked away to another room for testing. At the end of the appointment, parents are then told whether their child has autism, promised a report, and directed to services such as those provided by ABA programs, schools, or other therapists and developmental service agencies. The only follow-up that is often recommended is to go on for more testing with a geneticist or neurologist.  

I call this “Diagnose and Adios.” And it’s a broken system that shortchanges autism families. Initial diagnostic visits should be the beginning — not the end — of help from autism experts.

Silos: Not Just for Grain

Let’s unpack why the system abandons autism families and what we can do to change that. First, autism diagnosis and care is very siloed and fragmented. In academia or policy-making, silos refers to specialists who don’t think much outside their own box. Autism diagnosticians often do little autism treatment. ABA specialists often eschew special educators. Special educators use different criteria to “diagnose” “autistic-like learners” than doctors who use the standards of the American Psychiatric Association. Doctors who treat autism with medicines often know little about behavioral, educational, or other psychotherapeutic treatments for autism.

Second, our autism clinical community lacks resources to provide continuity of care. The concept of a “medical home” for patients with chronic illness like diabetes or cystic fibrosis are well-established. But for autism? This system has not yet developed, even though autism, for almost all diagnosed in childhood, will be a chronic, lifelong condition involving substantial challenges across many areas of functioning.

Start at the Very Beginning

Let’s start with improving the practical relevance of that first diagnostic visit. Parents need a chance to state their main concerns about their child, and for those to form priorities for early intervention. Pragmatic realities should be paramount. Whereas approaches like ABA (after you get off the waitlist) may start with standards like following receptive commands such as “touch your nose,” or identifying colors, numbers and shapes, the biggest concerns are often unaddressed. This may include that the child runs away in big open spaces, doesn’t eat or sleep much, or tantrums so much that parents are afraid of being evicted. These priorities involve the need for early parent training, not just getting on an ABA waitlist. Rather than saying “Adios,” diagnosticians should be equipped to give immediate behavioral guidance or better yet offer 1:1 parent training where an expert interventionist demonstrates and coaches parents on a skill like introducing a new food. Yet, the system is so siloed that families are instead shown the door.

Another significant concern with the diagnostic visit is validity. Children with early global developmental delays, or who are slow to warm, especially anxious, or very language delayed may present in ways that may not be indicative of their capabilities. Also, many diagnostic appointments don’t allow time for parents to voice their concerns, discuss how and why their child’s behavior might not be representative, or even learn what aspects of the child’s behavior clinched the doctor’s determination the child has autism. 

Then, after being verbally given the diagnosis of autism, parents are often vectored to genetics for further tests, such as for Fragile-X (exceedingly unlikely), or specific genes described in autism research (also exceedingly unlikely). Parents may also be sent to a neurologist, even when there is no indication of physical disability or seizures. Both genetic and neurology examinations are most always negative, and parents often do not understand that these further tests were virtually never expected to alter treatment planning anyway.

Finally, getting a diagnosis of autism is often a dramatically stressful event, on the scales with getting a diagnosis of cancer or facing any PTSD-causing situation. Reeling from the news that your child has autism, you may not exactly hear what it is you are supposed to do next when the doctor tells you. But even though a follow-up visit to discuss treatment services, and importantly, individualizing treatment priorities, is almost always in order, it is seldom offered.  

We Need Continuity of Care for Families Living with Autism

Why are we front-loading autism assessment? As children grow and develop over the years there is seldom clinical re-evaluation to help guide medical, behavioral and educational interventions. Worse, few clinicians are trained in, or feel capable of, treating adults with autism, particularly if they are severely impacted. Without a clinical home for autism, families justifiably feel abandoned by the system, left to fend for themselves.

We should work to create medical homes and continuity of care for autism in all of our communities. Our “Diagnose and Adios” approach to autism is outdated and a sort of systemic negligence. Families need to have places to keep coming back to monitor development, revise treatment plans and find an integrated team approach focused on practical needs, getting from diagnosis through adulthood — together.

Bryna Siegel, PhD, is the author of “The Politics of Autism” (Oxford University Press 2018). She is a former Professor of Child and Adolescent Psychiatry at University of California San Francisco, and currently serves as clinical director at Autism Center of Northern California.

Suffering in Silence: The Dark Side of Autism

“It is almost impossible to find information about self-injury and violence towards primary caregivers…. From an emotional standpoint, it is the most soul crushing situation I have ever gone through, and yet it seems we must suffer in silence.”

My precious boy enjoying a summer day at his favorite nature spot—he would live in the woods if we let him.

My precious boy enjoying a summer day at his favorite nature spot—he would live in the woods if we let him.

By VBS

The day before it happened, I had taken my 11 year-old, severely autistic son ice skating for the first time. The outdoor rink had lighted trees (a favorite interest of his), and fake snow falling from the roof overhang. Given his exceptionally good balance, love of roller skating and natural athletic abilities, I knew he’d do well on ice skates—but how would he do with the music, crowd, and other unknowns that could send him spiraling into a violent meltdown?

I got my answer within 30 seconds—he loved it! Holding my hands, he laughed and pushed to move faster across the ice. I asked him if he would like to come back, he said yes, and the following day we did. 

I picked him up from his group home and noticed he was on edge. My gut told me to change plans, but I didn’t. I still had the picture of the rink in my head, and asked him if he wanted to go. He said “skating,” so I proceeded to drive there. 

We were on the ice for less than a minute before he started seeking out children and adults to hit them. That’s when meltdown number one occurred. Thankfully, an EMT approached, and, between him and my skating skills, we were able to get my son off the ice and out of his blades, now being used as weapons as he attempted to kick me in the head.

But the worst was to come.

I waited for him to calm down before we drove off. I gave him soft sensory toys, and asked if he was hungry. No response, which usually means no. I gave him a cup of water, which he proceeded to throw across the car.  After a while, he grew calmer and I started driving. As I’m getting onto Highway 101 in Palo Alto, he suddenly unbuckles his seat belt, takes off his autism/seizure helmet, and begins to pound his face into the passenger side window.  

I know this routine: switch on the emergency lights, pull over NOW, stop this beating he’s inflicting on himself! I intervened, tears forming in my eyes, but trying to steady my voice to calm him. He stopped momentarily, and then I knew what’s next. He’s coming for me. 

Like an enraged animal, he pounces his entire 61-pound body onto my head, grabbing my hair with both hands and ripping out clumps only after he repeatedly bangs both of our heads into one another. He does this while climbing into the front seat of my car, using his feet on my neck as his kicking post. At this point I realize I am losing the ability to stop him, and I start screaming out of fear for both of us. 

“He pounces his entire 61-pound body onto my head, grabbing my hair with both hands and ripping out clumps only after he repeatedly bangs both of our heads into one another.”

Will he knock me unconscious? Will he give me another concussion? Will he run onto the 101 right now? He climbs into the back seat, and at this moment I see a California Highway Patrol car pull up behind us. I’m so relieved, and yet don’t know what the officer will be able to do, other than provide a momentary distraction to my son who loves police officers.  

By this point, my son and I were sitting in our respective seats, bleeding, disheveled, and crying. I explained what was going on, and, thankfully, the officer was understanding and offered to call an ambulance or wait with us until I felt it was safe to drive, Then he would escort us back to my son’s group home. I opted for the latter, as going to the emergency room would only aggravate the situation at this point. We made it back, and survived another day.

What do you do when the person you love more than anything else in this world —the beautiful boy who loves to dance and snuggle—becomes the person you fear? I am a mom not just to him, but to another child with autism as well, so I must protect myself, and my parenting motto is grounded in a sense of overwhelming responsibility— “don’t ever die, and don’t ever become a burden.” 

My younger son about whom I write here is the more severely affected, and the self-injury and violence towards me has escalated exponentially in the past year. Medical practitioners attribute this nightmare to the start of puberty, but none of them have truly been able to help. Medication has been somewhat helpful, but only for a short period of time and then he’s back to square one. 

I need the medical establishment and our greater community to understand the severity of our situation. I am simultaneously afraid for my son and afraid of him. He desperately needs relief from the root cause of these attacks, and so do I. But from my experience we have not made any progress. No one can tell me why my children have autism or their co-morbid medical issues. The interventions have been largely ineffective. And in the meantime our suffering, for us and for countless autism families like ours, is incalculable.

“And in the meantime our suffering, for us and for countless autism families like ours, is incalculable.”

In addition, it is almost impossible to find information about self-injury and violence towards primary caregivers from autism organizations. From an emotional standpoint, it is the most soul crushing situation I have ever gone through, and yet it seems we must suffer in silence.

VBS is a mother of two autistic children. She lives in the San Francisco Bay Area. She would like to stress that her son has no control over his actions and that all statements are made without judgment.

Thank you, autism community, for your outpouring of support

Dear Autism Community,

When we launched the National Council on Severe Autism last week we were almost immediately inundated with notes and emails of support from across the country. Thank you for your immense kindness and gracious outpouring of encouragement. We are humbled by your votes of confidence and frustration with the status quo, and inspired by the beautiful and sometimes harrowing stories you shared.

Many asked how you could help. Here are a few simple ways:

  1. Please sign up for updates at our homepage. 

  2. Please follow us on social media. Facebook: https://www.facebook.com/ncsautism/. Twitter: https://twitter.com/NCSAutismOrg

  3. Please consider submitting a post for our blog to info@ncsautism.org.

As we further develop our education and advocacy agenda we will alert families and practitioners to targeted opportunities to facilitate progress. Together, we are changing the national conversation about autism.

On behalf of the NCSA board of directors, we humbly thank you,

Jill Escher, President
Feda Almaliti, Vice President

info@ncsautism.org

"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.

Clinical Research in Severe Autism: Working to Do Better

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

By Joseph D. Buxbaum, PhD

Buxbaum+headshot+in+lab.jpg

It is an open secret in the research community that much of what we know about the neuroscience of autism is very biased in critical ways. Most obvious are the many types of patient-based studies that rely heavily on individuals who are the least severely affected. For example, any time one encounters a report about functional neuroimaging and autism, one should ask oneself whether the task in the study could readily be done by anyone on the spectrum, irrespective of severity. The answer is often no, which means that the study was carried out with individuals that represent a portion of the spectrum (and there is little or no reason to believe that this subgroup is representative of all of the spectrum). Widely read review papers that summarize what we know about the ‘neuroscience of autism,’ rely heavily on such studies, so these biases are pervasive in both specialty and non-specialty literature.

More broadly, for any report, one should also ask whether more severely affected individuals, with frequent, significant comorbidities, including cognitive and language delays, hyperactivity, attentional issues, anxiety, difficulties with new environments, and struggles with following instructions are likely to be equally represented in the study. Here too, in many such studies, the answer is a clear no. In fact, recent results on the enrollment of more severely affected individuals in clinical trials shows that the enrollment of such individuals is actually decreasing over time (Stedman et al 2018). 

One unanticipated consequence of DSM-5 is that we have lost the split between autistic disorder and Asperger’s Disorder/PDD-NOS, which provided a relatively easy means of providing some (albeit imperfect) sense of the levels of severity across participants. Unfortunately, ICD-11 is following suit, which means that large national and epidemiological studies throughout the world will also lose this critical information. We encourage all groups to include metrics of severity in any ASD study, as a necessary part of the report and we would like to see journals insisting on such information. 

“We encourage all groups to include metrics of severity in any ASD study, as a necessary part
of the report and we would like to see journals insisting on such information.”

The Seaver Autism Center has multiple studies that include those who are most severely affected. To give one example, we carry out detailed clinical and neurobiological assessments on individuals with rare genetic disorders with very high risk for autism. Necessarily, we take all comers, irrespective of the level of severity. This means that we have to adapt all protocols to ensure that we can include those with the greatest need. To give two examples, using a neurobiological approach with evoked potentials provides a means of gathering EEG data in just a few minutes (Siper et al 2016). In addition, we have EEG caps with many electrodes, as is typical, but we also have versions with just three electrodes, which can be placed and removed in moments and have a minimal tactile impact. 

A second example is around sensory processing issues. Much of the description of sensory processing in autism comes from self-report. Think of how widespread is the appreciation of Temple Grandin's experiences. For those who may not be effective at speaking for themselves, we rely on parent and caregiver report, which could be confounded in many ways. Paige Siper and Teresa Tavassoli developed an assessment battery where they present an individual with auditory, visual and tactile stimuli, and rate the responses in each modality as being either normosensitive, hypersensitive, hyposensitive, or sensory seeking (Siper et al 2017). We are using this observational battery (called Sensory Assessment for Neurodevelopmental Disorders, or SAND) across the severity spectrum. The good news is that the results SAND correlate well with parent/caregiver report, however, in the case of using sensory processing as an outcome, we would want something that is observational and more objective, hence the critical need for measures like SAND

We at the Seaver Center wish we could do better, and continue to be frustrated by our limitations — and the limitations in the field — to include those who are most severely affected in all studies, including critical intervention studies. Sadly, there is no question that this issue has been an obvious one for decades and yet the research community has so far failed to address it adequately. It falls, therefore, to the advocacy community to speak for the most severely affected and to demand that the community does much better with research and treatment in this most vulnerable population. 

“Sadly, there is no question that this issue has been an obvious one for decades and yet the research community
has so far failed to address it adequately.”

I am personally very excited and enthusiastic about the National Council for Severe Autism.

Joseph D. Buxbaum is the Director of the Seaver Autism Center for Research and Treatment at the Icahn School of Medicine at Mount Sinai, New York.

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.

Share Your Story

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NCSA wants to hear from you.

Please share with us your story and concerns, and also your ideas about how to improve the lives and prospects for all those affected by severe forms of autism and related disorders. Topics may include, for example:

• Housing and long-term supports
• Education and training
• Day programs and employment
• Medical care and therapeutics
• Behavioral crisis and crisis care
• Financial issues
• Autism research
• Individual, parent and family well-being

Your information will help inform NCSA’s efforts, and will be kept confidential. If follow-up information is needed, we will contact you. Thank you for your generous assistance and time.