Autism Fantasies v. Autism Realities at the United Nations

Lisa McCauley Parles speaking at the United Nations for World Autism Awareness Day.

By Lisa McCauley Parles

Two years ago, when I was asked to speak at The United Nations for World Autism Awareness Day I was honored. When I saw that the topic was “The Road to Independent Living,” I wondered if the organizers were familiar with my work focusing on individuals with severe autism. But after I was told they were looking for a variety of perspectives, I eagerly accepted the invitation. As I sat in the great hall listening to other speakers I was surprised, saddened and then truly angered.

Though I have worked in the area of autism advocacy for decades, I had never encountered such direct hostility toward families and guardians struggling to help and protect their severely disabled loved ones. One speaker suggested that the use of iPads for choice making could make guardianships unnecessary. I thought to myself, I am confident that my son’s surgeon would not have equated his selection of cheeto vs. juice as informed consent for complex eye surgery.

As parents were portrayed as controlling enslavers my anger grew. When a speaker proclaimed that guardianship is “the equivalent of slavery and genital mutilation” it boiled over. On that day at the U.N. I was overwhelmed by the intense need to tell our stories, to organize families, researchers, providers and others and to bring facts and reality forward.

You can watch my U.N. presentation above, where I address the real life, often heartbreaking, decisions autism parents need to make every day. 

World Autism Awareness Day is this Tuesday, April 2, 2019. Will the public and world leaders again be fed a narrative that ignores our population with severe autism and vilifies parents? Let's hope not. The launch of the NCSA is a critical step towards effective advocacy for the needs of individuals with severe autism and their families. For more information, see ncsautism.org.

Lisa McCauley Parles is an attorney based in New Jersey.  She is a member of the board of NCSA.

California's Autism Explosion: An Eyewitness Perspective

“In the 1960s clinicians seldom encountered these sorts of very striking abnormalities, whatever the category name."

California Department of Developmental Services
​Autism Cases by Birth Year

Autism cases by birth year, showing the growth in California Department of Developmental Services autism, from 0.001% in birth year 1931 to 1.18% in birth year 2012. Data from 2017. Graph from Nevison et al 2018.

The author

By Sue Swezey

A new paper looking at autism prevalence in California tells us what we old-timers already know: autism rates here have increased almost exponentially over the past several decades.(1)

Yet to this day, some academics suggest that the autism increase doesn’t exist.(2) These doubters question the consistency of data collection and point to greater skill on the part of diagnosticians, as well as to broadening of diagnostic criteria. A few even blame the victim, implying that grasping parents may seek the ASD label to obtain trendy services for their more typically functioning offspring, or that professionals may profit by jumping on the autism bandwagon. Who ever dreamed autism would have such cachet?  

Doubters of the increase seem to accuse believers of some form of delusion, maintaining either that (a) there are really fewer children on the spectrum than people claim, and we are over-labeling milder disorders, or (b) there have always been huge numbers of children on the spectrum who went all but unnoticed until recently. Pick your fallacy.

While Nero fiddles and academics bicker, one thing is beyond dispute: agencies are increasingly hard-pressed to meet the immense needs of the rapidly growing caseloads of disabled young adults, and special ed classes overflow with ASD children, where just a few decades ago only a handful were seen. Families are growing desperate for lifespan services, and housing demand massively exceeds supply.

As the parent of a 55-year-old son with autism (who still lives at home, with me), and as someone who has been an active autism advocate for nearly five decades, I am puzzled. If there has really been no increase over the last 55 years, then there must have been an equally large percentage of children on the spectrum when John was little. How could it be that I never encountered them? As a youngster, John was memorable in any setting. Were all the others so well behaved, so very mildly disabled, that no one noticed? 

“If there has really been no increase over the last 55 years, then there must have been an equally large percentage of children on the spectrum when John was little. How could it be that I never encountered them?”

The author’s son as a toddler

Back in the 1960s, there were only a handful of other children in our entire county with impairments like his. John was born in 1963, likely part of an autism blip resulting from an outbreak of German measles.(3) When he was finally diagnosed at age six, conventional wisdom counted 4:10,000 (1:2,500) with the autism label,(4) a far cry from the 1:59 which the CDC cites today.(5) What accounts for the immense discrepancy between then and now?

“His pediatrician had seen only one other case like John’s in 20 years of practice.”

All I know for sure is that John’s history is that of a little boy very much alone with his diagnosis. His San Mateo pediatrician had seen only one other case like John’s in 20 years of practice. It took six years and a succession of experts to award him with the autism label, with stops along the way for learning disabled, neurologically handicapped, emotionally disturbed, childhood schizophrenic, and “troubled” (this from a therapist who  didn’t like labels, so invented his own). While John would now be considered classically autistic from an early age, his symptoms under any label were then extremely rare. We can certainly agree that diagnosis has improved since his childhood, but that cannot explain that in the 1960s clinicians seldom encountered these sorts of very striking abnormalities, whatever the category name.

In the community, no one knew what to make of John, or of his suspected “Refrigerator Mother,” as we were sometimes called. They had never seen anyone like him before. As a rapidly regressing preschooler, he desperately needed help. While no one knew what to do, everyone seemed to have firm opinions. A school psychologist blamed John’s total lack of social skills on Sunday school avoidance (though I fear even Jesus might have been hard pressed…). Well-meaning neighbors insisted that the neighborhood co-op would bring miracles of socialization; the actual result was to make him one of the earliest and most miserable victims of forced inclusion. (As parents know, inclusion can be wonderful when it's done right. This wasn’t.)  

In the late 1960’s John was registered with the San Mateo school district, as required by law – not that he could attend, because public schools did not then have a legal mandate to serve children with autism. At the time, the San Mateo district was aware of only one other child with autism, as was also the case when we moved down the county to Menlo Park in 1973. (Note: San Mateo County now has about 1,000 cases of autism in the state Developmental Services system, comprising about one-fourth of the total developmental disability caseload in the county.)

Programs specifically designed for autism did not exist at the time of John’s diagnosis. The scattered children with autism were so few and far between that they had to squeeze into programs for other disabilities, or for the emotionally disturbed. Often the few children who did not fit into public school were farmed out to programs outside their districts, sometimes far from home or even out of state. ​

California DDS autism prevalence among 8 year-olds (purple), compared to 8 year-olds from the IDEA and ADDM networks. DDS prevalence, while still clearly growing since the 1980s, may be lower because it includes only the more severe (developmental disability level) cases. Graph from Nevison et al 2018.

In fact, the first Autism Society of America (ASA) chapter in San Mateo County could find so few members that we met jointly with parents of adult schizophrenics. We called  ourselves PASCA, Parents of Adults with Schizophrenia and Children with Autism. We had little in common except that our scant funding came through Mental Health, though we did share the bond of being rare outcasts in neighborhoods full of “normal” families. At the time, some autism professionals considered those rare cases of autism to be a form of childhood schizophrenia, with meager research being reported in the Journal of Autism and Childhood Schizophrenia.  
 
In the early days of our ASA chapter, we were desperate to get our children into the Regional Center system, where they could be treated as developmentally disabled rather than disturbed and could gain access to appropriate programs and services. Here again we were hampered by our small population. We early advocates besieging Sacramento tried to give legislators the impression that we were a much larger group and sometimes resorted to disguises, complete with wigs and quick wardrobe changes. 

By the late 1970s autism was finally included in the Regional Center system. Even with its case-finding mandate, autism barely registered in the overall caseload. It was not until the late 1980s that we became aware of a significant autism increase. At that time California’s DDS saw an inexplicable surge in cases, prompting them in the late 1990s to review their growing caseloads for an explanation such as diagnostic shift (their review could not locate any sociological or diagnostic explanation for the increase). The Autism Research Institute also noted the start of a surprising rise in incidence. 

Lurking in the background all this time was the DSM (Diagnostic and Statistical Manual of Mental Disorders). Revisions over the years have encompassed changing and often controversial views of autism, which some blame for the apparent increase in autism’s prevalence. But reports here in California of exploding prevalence have come mainly from agencies evaluating children under developmental disability criteria that have grown more stringent over time, not more generous. While the DSM can reshape the elusive boundaries of autism, in California our hard-core DD-level autism has grown from fewer than 2,000 when John was a boy to more than 108,000 today. DSM’s fluctuating definitions have prompted a lot of quibbling, but perhaps the most compelling evidence for an autism increase comes from the desperate need for services from the unquestionably expanding population of young adults too mentally disabled to care for themselves.

Has increased awareness created the illusion of an autism surge? I simply cannot imagine that there were tens of thousands of children with autism who were undiagnosed or misdiagnosed over decades. If such a huge population had existed, they surely would have been conspicuous enough to attract attention, at least if they were anything at all like John. Physicians encountered so few patients with autism traits that our ASA chapter actively tried to promote physician awareness by papering doctors’ offices with homemade flyers entitled, “Your Next Patient Has Autism.” 

Yes, in John’s lifetime diagnosis has improved, diagnostic criteria have broadened, and diagnostic methodologies continue to evolve. But this progress cannot explain the supposed missing masses of children whom we somehow failed to detect under our noses half a century ago. If the incidence were really the same then as now, John's childhood must have been populated with phantom children whom we never saw. The clinicians never saw. The teachers never saw. The neighborhoods never saw. The Regional Centers never saw. The institutions never saw. There is no documentation anywhere to suggest the existence of these shadow children, except in the minds of some academics.

​Sue Swezey is the mother of an adult son with autism.  She co-founded the San Mateo County Autism Society, now part of Autism Society San Francisco Bay Area, and served on the Executive Committee of the San Mateo County Developmental Disabilities Council. She also served on the Morgan Autism Center board from 1974-2012. Sue was one of the first to report on uses of technology for special needs and published a special education technology journal from 1981-2009. She lives in Menlo Park, California, with her son John.

A version of this blogpost was first published on the blog of Autism Society San Francisco Bay Area in September 2018.

References:
(1) Nevison C. et al. California Autism Prevalence Trends from 1931 to 2014 and Comparison to National ASD Data from IDEA and ADDM. J Autism Dev Disord. 2018. July 5.
(2) See, for example, Fombonne, E. The rising prevalence of autism. J Child Psych. and Psychiatry 2018;59:7,717-720.
(3) See, for example, Chess S. Autism in children with congenital rubella, J Autism and Childhood Schizophrenia1971;1(1):33-47. Also discussed in the 1970’s in The Advocate, the newsletter of the National Society for Autistic Children (NSAC). NSAC was the predecessor of ASA but served only school-age children and their families, since there were few known adults with autism at the time. 
(4) See, for example, Fombonne, E. Is there an epidemic of autism? Pediatrics 2001;107:411–412. Also reported by NSAC. Research was scarce at the time, since autism was not considered statistically significant enough to warrant funding.
(5) Baio J, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. Surveillance Summaries / April 27, 2018 / 67(6);1–23. This surveillance study identified 1 in 59 children (1 in 37 boys and 1 in 151 girls) as having autism spectrum disorder.

Note: NCSA and the author wish to emphasize this from the NCSA FAQ: “[T]he vast majority of autism cases today are still considered ‘idiopathic,’ in other words, having no identified cause. There is no evidence linking the rising prevalence of autism to childhood vaccines, or vaccines given in any other developmental window. We encourage parents to ensure their children are fully vaccinated in accordance with the recommendations of the American Academy of Pediatrics. Infections resulting from failure to vaccinate can cause serious harm to a child, including brain damage and death.”

Parent-Blaming and Autism: Tragically Trending Again

“I have seen the toll of autism parent-bashing firsthand, and it makes me sick to see a new crusade against parents.”

The author as a young boy in his Los Angeles home.

By Jonathan Mitchell

Many persons interested in autism have heard the term “Refrigerator Mother,” referring to mothers whose cold and uncaring parenting supposedly resulted in a child developing autism, or at one time, something called childhood schizophrenia. This idea was popularized by a fake psychologist named Bruno Bettelheim who explained autism using some of the psychoanalytic theories of Sigmund Freud. He also claimed he was able to ameliorate or possibly cure these conditions in a residential school he ran in Chicago. 

Years later, evidence emerged these conditions might be due to a biological impairment of brain development rather than psychologic trauma from negligent parents. Fortunately, Bernard Rimland, father of an autistic boy, pioneered organic theories of autism in a book called Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, published in 1964. But still the horrible Refrigerator Mother theory persisted for some time.

For most people, Bettelheim is a historical footnote, but my family and I lived this terrible era firsthand.  

“For most people, Bettelheim is a historical footnote, but my family and I lived this terrible era firsthand. “

I was born in 1955 and shortly before my third birthday, my parents noted I had little to no speech, tantrums, and other problems. They took me to a neurologist to find out what was wrong, but he had no idea. In those days, very few people had ever heard of autism. They believed my problems were emotional rather than neurologic, and I began what would be ten years of frequently seeing a psychoanalyst.  

In early 1958, my parents bought a lot and had a house built on it. They would devote much time to this project and painted the house themselves. My analyst said that by devoting too much time to the house they neglected me and helped cause my problems. My mom was told I would not recover unless she underwent psychiatric treatment and saw a psychiatrist for five years. Our psychotherapy bills, both mine and my mother’s, were so high my parents were audited by the IRS for writing them off as medical expenses.

The film Refrigerator Mothers tells the story of a generation of women from the 1950s through the 1970s, whose childrens' autism was blamed on poor mothering.

The parent-blaming got worse. Because my symptoms presented right around the time of my sister’s birth, another Freudian trope – castration anxiety – was put down as another cause of my problems. The psychologist said I had suffered psychologic trauma because my parents had allowed me to see my sister naked when she was an infant. She posited that I thought my parents had castrated her, and that I feared my father would surely castrate me to avenge alleged sexual fantasies I had of my mom. A therapist also told my mom one of the reasons for my problems was because my mom had wanted a daughter instead of a son and that was why she was rejecting me. This absurd idea and blaming of my parents, particularly of my mother, traumatized my mom.  

I stopped analysis at age thirteen. Not long afterwards, a consensus grew that autism was not a psychogenic condition, but a neurologic impairment resulting from some combination of genetics and environment. Psychoanalysis was replaced with behavior modification (nowadays called Applied Behavior Analysis) and other interventions.

But has the era of parent-blaming really come to an end?  

It seems not. I have seen, particularly on Twitter, that militant believers in neurodiversity — the belief that rather than being a disability, autism is a strength, even a superpower — often express hostility and contempt toward parents of autistic children. They are mocked as “Autism Martyr Parents” who share on "Autism Mommy Facebook Groups” and constantly fail their children, who deserve to have better parents.

”Militant believers in neurodiversity…often express hostility and contempt toward parents of autistic children. They are mocked as ‘Autism Martyr Parents’ who share on ‘Autism Mommy Facebook Groups’ and constantly fail their children.”

I’ve been victimized by these neuro-thugs, too. Year ago, I started writing in various news groups and started my own blog, discussing how much I hated my autism and wanted a cure. Some persons called me a Nazi or Joseph Goebbels. Others called me insulting names such as turdball and butt wipe. Others mocked my disability. Some of these individuals stated that the reason for my impairments was not my autism per se, but because I had such a horrible, domineering mother who taught me to hate myself. They said had I not been taught autism is bad, I would not have had the attitudes I have now, and would have been a functional individual, able to hold down a high-paying job and get married. My mother was even called a witch and a yapping shrew by some. They may not have been actual disciples of Bettelheim, but it seemed darn close.

Autism parents are often at the receiving end of this sort of abuse. Neurodiversity bloggers have stated that parents who support prevention or treatments for autism were no different than members of the Ku Klux Klan. Recently, one mother posted a photo on Twitter of her autistic adult son sitting in a gym lobby while his father worked out, lamenting that he could not join his dad. She was immediately castigated, stating how dare she desire a normal life for her son. She was called an unfit mother and told that her son should be taken away from her. 

One mom wrote about her autistic son, who chewed his shoe, and was castigated for violating his privacy. Another neurodiversity self-advocate posted a video on YouTube stating that parents of autistic children did not give a f**k about their children and wished their own children would drop dead. This is a subset of many examples of this behavior from neurodiversity proponents.

I have seen the toll of autism parent-bashing firsthand, and it makes me sick to see a new crusade against parents. I wish we could bury it six feet under. 

Jonathan Mitchell is a man with autism living in Los Angeles. You can find him on Twitter at @autismgadfly and on Facebook and at his blog autismgadfly.blogspot.com.

Letters and notes: "We desperately need a national voice for those with severe autism"

The NCSA has received a tremendous outpouring of support from around the country, with the overwhelming sentiment: “Thank God someone is finally talking about our issues!” We appreciate your votes of confidence in our pragmatic vision to address head-on our mounting crisis—together we will work to provide a strong voice for our disabled loved ones who cannot speak for, nor care for, themselves.

Below we feature just a handful of your many comments and stories. Thank you for your sharing and support.

—NCSA

Your organization gives me hope

I saw the term "prisoner of autism” posted by a mom in a comment on your Facebook page. That phrase is horrifying. How could a mom, ANY MOTHER, feel like that about her child's condition?  

And yet, I know that feeling. I understand it. The only person I've ever been brave enough to voice those exact words to is my husband. For ten years, I have been a prisoner of SEVERE AUTISM. There, I said it! Or typed it...?  

There isn't one area of my life that isn't completely ruled by my son's autism. He has the sort of autism that no one likes to talk about. The kind where a 9 year-old breaks the windshield out of the family vehicle over and over again. The kind of autism that means he doesn't sleep through the night more than a handful of times a year.  

Despite years of every type of therapy we've been told would make a difference, were able to get him to, and managed to pay for, he's unable to speak or communicate in any meaningful way. He has never progressed past an 18-24 month level. His obsessions rule every part of his life, and increasingly, our lives. He takes as many as 20 baths a day. He wipes his face with anything until he rubs his skin completely off. Then, because it hurts, he rubs it even more.  

The most heartbreaking part is that even though he's the most loving child you could ever imagine, he can be extremely violent. He's very large for his age. He already weighs about 140 pounds at the age of 10. He's stronger than you can imagine, and when he's raging, keeping him and ourselves safe is nearly impossible. We are all constantly covered in bruises from his pinches and bites, and each day I lose several handfuls of hair.

The very worst moments are after these times of rage, when he seems so sad and hopeless. He lays of the floor and sobs. These are some of the moments that I realize how powerless he is to win against the battle going on in his mind. How he is suffering the most as a prisoner to what we call AUTISM.

These are the moments when it's clear that my inability to get out of the house to buy groceries, safely transport him anywhere, meet friends, attend a family event, go to the bathroom, shower, eat a meal at the table, sleep in my bed, or even SLEEP, doesn't even compare to how captive my son is to his condition. I can at least communicate when I need to. I'm not compelled to rub the tops of my feet on the floor, with every step, until the tops of my feet are bloody. My incarceration is the equivalent of a luxury cruise compared to what he endures every day. And that is exactly what keeps me going. THAT'S what gives me the strength to get through the day. If he can face the day, then so can I. If he can smile, SO CAN I.

Knowing that NCSA is giving a voice to my family is so uplifting. We live a very different life from everyone else we know, even from other autism families. EVERY SINGLE minute and area of our lives is ruled by my son’s autism. Your organization gives me hope that families like ours won’t always have to feel so isolated and fearful of sharing our experiences and that we can work together to protect our loved ones who cannot protect or speak for themselves.

Finding the NCSA gives me hope that families like ours won’t always feel so isolated.  Families like ours need to feel like there is support and hope. We’ve learned to keep quiet about our struggles because we simply can’t afford the time or energy to stand up for ourselves or our loved ones when we are attacked and criticized by many in the autism community. The NCSA gives a voice to our reality in a way I haven’t seen before. Thank you.

—Lolita Quinn. Mrs. Quinn lives in Southern Illinois. Three of her four children have special needs, one with a severe form of autism. She and her husband, a veteran and a police officer, have a small business designing, manufacturing, and selling safety alert products for people with autism.

The NCSA has heard the anguish of families dealing with severely disabled adults

I see NCSA as a welcome, highly needed advocacy group for the severely cognitively disabled - and long overdue. Certainly inclusion and the many efforts to expand the lives of cognitively disabled individuals should be lauded and encouraged. However, the aggressive romanticism of autism and the insistence that the severely autistic can work, live independently and participate exclusively in "the community" has left a large segment of this population out in the cold - without housing or appropriate or sufficient programming. . And the matter of violence is simply ignored - despite it being a very common characteristic of severe adult autistic many whom are very limited - non verbal, aggressive, self injurious, or plagued by mental illness or extreme behaviors. Traits which fail to respond to modern behavioral strategies or even medication. We are not talking the "Good Doctor" here. Its pure foolishness and naivete to argue that these individuals are being stripped of their "voice". They have no voice. The parents and caregivers are their voice - their only voice - and we will not be shut down. The NCSA has heard the anguish of families dealing with severely disabled adults. They may be a lone voice in the wilderness right now, but hopefully that will change.
—Ann Sanok, via Facebook

I’m very thankful for this new organization

I’d like for anyone speaking out against this wonderful organization to live a week in my shoes alongside my daughter, who has severe cognitive delays. The few assessments she’s able to get through indicate she is chronologically 19 yrs old, but has the mental capabilities of a toddler, if that. The people who seem to take joy in telling us how to live our lives seem to have loved ones who are much more successful at life and in school than my child will ever be. I’m not sure why they think they know better? I wouldn’t presume to tell them what is best for their lives. I also don’t appreciate the attitude that comes with this backlash. It’s always an exasperating tone, and often “better than thou”, and I have often felt bullied. So much so that I steer far, far away from one of the people mentioned in the article, who is sadly often part of the backlash in these conversations. She, and those who follow her, do a vast disservice to so many, when she could otherwise use her intelligence, energy, and resources to reach out and help so many more. Who truly need it. So I’m very thankful for this new organization. I’m praying my daughter and I reap many benefits from it, because it truly does take a village, and I’m thankful I’ve found people who understand us. If she could understand this, she’d probably be thankful too.
—Becky Brown, via Facebook

Thank you for existing, it gives me hope

I was so glad to hear about the NCSA. So many people don't understand what it's like having a 14 year-old son, still in diapers, who can't be left alone for fear of elopement or self-injury. He could never tell me where he wants to live. Anytime we go any place at all he constantly repeats "Go home" until we leave. What does "home" mean to him? Now it means living with Mom, since his dad passed away when he was three and a half. 

I won't live forever, and choosing a home to transition to should happen while I'm still alive and able to help him, but we can't count on that. I could die suddenly and he would just be thrust wherever they could find a spot that would take him. 

He is very high needs, very demanding. He speaks using verbal language but not conversationally. You can't ask him how he feels. You can't ask him does something hurt. You can't even ask him "Chocolate or Vanilla?" He won't answer and I try every day to this day. I did get one answer out of him once. I asked him what do you want? He said music. 

Music is the only thing he loves, he doesn't watch a tablet or do puzzles or watch the same TV show over and over again. He just likes to hear music, and he likes to sing sometimes, though lately I've noticed it's been less and I ask him why? I get no answer. 

To even pretend that all human beings are capable of self-determination was the most ridiculous thing I'd heard. My son can't determine what is best for him and I won't live forever, I just really hope I don't have to bury him young. His elopement behaviors are still a concern though he hasn't made a serious attempt in a long time. 

I'm always on edge hoping it's quiet because he's still sleeping, despite the fact that we had to board up his windows because he was breaking them to keep him from crawling out. He’s a small 14. 

Thank you for existing, seriously it gives me hope. So many single moms also have the problem of income, we can only work when the kids are at school, and most jobs aren't like that, sometimes even two parents struggle. There is so much room for improvement when it comes to helping people who have these special needs kids and the kids themselves.

—FW is a single mother of a boy with a severe form of autism

A voice to all the rest of us who have been marginalized and silenced

I’m autistic, my kids are autistic, and my granddaughter is severely autistic. 
I support you 100%, and I’m glad you are forming and will finally provide a voice to all the rest of us who have been marginalized and silenced. 
Yes, they proved your need to be here....and our family is sooo glad you are here. Keep up the good work. ❤️

—Faith Riverstone, via Facebook

An important step in raising awareness and putting a spotlight on these hidden struggles

The field of autism research and services has not adequately addressed or supported families like this. My team has been trying to launch a couple of small pilot studies about the challenges facing severely impaired youth and their families during transition. But it's hard to find funding to develop practical solutions for people living with autism now because it's not "basic research" (which is where the big $$ goes). And only 1% of ASD research $ looks at adult issues. As difficult as this family's struggles are now, they will be more difficult when this child weighs 161 lbs instead of 61 lbs. We need useful new knowledge to inform helpful services and policies across the spectrum and across the life course. Sharing stories like this is an important step in raising awareness and putting a spotlight on these hidden struggles. Families like this often mistakenly conclude they've failed when they experience this kind of struggle. The truth is we've all failed these families -- their personal problems are manifestations of institutional and societal failure... and we all need to do better.
—Paul Shattuck, Drexel University, via Facebook

So thankful that this side of autism is being shared

I am so thankful that this side of autism is being shared. So many people see the my daughter as a beautiful, laughing child (which she is, don't get me wrong). What they don't see is this same child attacking me, her mom. It is embarrassing when this happens in public. I have left many places in tears due to this pretty little 11 year beating the crap out of me.
— Shannon Jungerman, via Facebook

We desperately need a national voice for those with severe autism 

My wife and I raised our grandson, who we call JJ, and who is nonverbal autistic with other significant cognitive delays. He is now 30 years old and needs 24-hour supervision and assistance. My wife is now 68 and I am 71 years old.

We have struggled to find any residential program that provides the care he needs. The training of staff is usually very minimal and they don't get paid enough to keep most staff long enough for anyone to develop any kind of a relationship with JJ. We have tried our best to remain involved in his programming and care needs, but at some of the places JJ has been, parent or guardian involvement seems to be foreign to them and they do not welcome the involvement.

JJ has also been a victim of the closing and reduction of opportunities provided by the sheltered workshops. He is now in what is basically an adult day care four days a week. The state touts the idea that all people with developmental disabilities should work, but of course we have been told that because of JJ's limited skills and behaviors he will never be eligible for any work program.

We have long been advocates for a campus setting for JJ which would provide tremendous advantages not only in terms of efficiency in providing services but also because a campus setting allows those living there to live with their peers and actually be a part of a community. We have seen that people like JJ living in group homes or their own apartments are rarely part of the community in any meaningful sense, but are in most cases painfully isolated and merely tolerated.

However here in Minnesota, options to create group settings for the severely disabled run into a brick wall since the ARC of Minnesota argues that any such settings are by definition “institutional.” Since when is every group program institutional? Such settings are fine for students, for those with enduring medical needs, and for the elderly, so why not for the severely disabled? Institutional means someone lives there against their will. In JJ's case he would be overjoyed to find a home that actually met his needs, where he is accepted, has friends and real opportunities.

We desperately need a national voice for those with severe autism, and we are greatly pleased with the formation of NCSA.

—Eugene Rossum. Mr. Rossum is a retired manufacturing manager who lives in Brandon, MN.

This is so necessary

Finally! This is so necessary. We can no longer lump Aspergers with autism and call it the same thing …
—Debbie Gaylord, via Facebook

Thank you for creating this National Council on Severe Autism. It has been long overdue.

I am a mother to three children with autism (twin teenage daughters who have severe autism) and without adequate support, the most simple of errands have become the most difficult to complete. Thank you for creating this National Council on Severe Autism...It has been long overdue and we greatly appreciate it!
—Jennifer Penhale, via Facebook

We support NCSA

Our family feels very much alone in our struggles to help our beautiful girl. School and doctors sometimes make this worse because they don’t get it. We support NCSA and hope it makes a difference.
— Veronica Colon-Rodriguez, via Facebook

Fills a HUGE need

This group/website fills a HUGE need, so of course, some people hate it. Which is part of why it's needed. Jill Escher, Amy Fisher Lutz, and cohorts -- BRAVA (and bravo to the dudes)!
—David Royko, via Facebook

Great need for the NCSA

Mom of child severely affect by Autism and can’t express enough for the great need for the NCSA!!!
—Tracey Chew-Bullock, via Facebook

Diagnose and Adios? Autism Families Deserve Better

By 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.

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.

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

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

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.