Family Separation, Autism Style

What happens when it’s no longer safe for an autism family to stay together?

Moving into their new home, Milton Hershey School.

Moving into their new home, Milton Hershey School.

SeparationSchool.jpeg

By EF

“Mom, what is this place? Can I live here?”

My ten-year-old daughter and I were driving through the Milton Hershey School on Route 322. I looked out the window and knew she was right. She needed a way out. With these honest and painful words, my daughter helped our autism family find a better way.  

This is the story about why my husband and I decided to place our three typical children in a boarding school and keep our severely autistic, nonverbal son at home. 

My purpose in sharing is not to seek pity, but to expose the heartbreakingly difficult decisions we autism families often must make. All autism families have a tolerance threshold. We all need to respect this threshold and support each other. There are no clear answers when it comes to dealing with aggressive autism. We do our best, make difficult decisions, and keep going.    

“There are no clear answers when it comes to dealing with aggressive autism.
We do our best, make difficult decisions, and keep going.”

My husband and I have four children ages 6, 8, 10, and 12, and we live near Hershey, Pennsylvania. Our oldest, S, has severe, nonverbal autism and an intellectual disability. S is so much more than his diagnosis, and I've made this clear to him and to others. He loves riding rollercoasters, blowing out birthday candles, watching geese fly in formation, and the list goes on. His siblings are typical children who enjoy playing sports, going to parks, and spending time with friends.    

Ninety-seven percent of the time, S doesn’t have aggressive behaviors. I know that my family is fortunate because we are raising a child with autism who is happy and content most of the time. But S is driven by impulses that are usually unknowable and irrational, therefore he needs 1:1 care 100% of the time.     

You might ask if a family can be in crisis if the child’s behavior is violent only a percentage of the time. The answer is absolutely, yes. S’s siblings have had to learn how to move quickly, scream loudly, and get help. In a split second, S’s behaviors can change. He can go from sitting on the couch playing with a musical toy to chasing you down in attack mode. Noise, denied access, physical discomfort, changes in the environment, or other triggers can cause a crisis. I am ashamed to say that my children lived fearing for their safety in their own home. They screamed screeches no child should ever be in the position to scream. They endured hair pulls, scratches, hits, as well as having objects thrown at them. My children flinched and took cover when their brother moved too quickly or made a sudden, loud vocalization. They ran for cover under the kitchen table, hid in a bedroom, or darted out of the house.  

We did our best

We always believed that we could help S learn how to control his behaviors. He has made tremendous progress over the years and has been having much fewer aggressive outbursts. His self-injurious behaviors and aggressive behaviors towards others began when he was a toddler. These are deeply ingrained, habitual behaviors. We sought early intervention help when S was two years old, and two years later, we enrolled him at a private school for children with moderate to severe autism. He received a laundry list of therapies and home and community support. He learned how to communicate using picture cards, and then, he moved on to using an app on his iPad. I flooded my home with hours of therapy and fully believed that, with professional help, I could help my child.  

Even with a high level of skilled support, in January 2014, S’s aggressive behaviors toward his brother and sisters, as well as himself, were so extreme and frequent that our family decided we needed him in a hospitalization program. We went through the long process of waiting in a local ER for a bed to open somewhere in the state. Once we finally had our son placed, my husband and I immediately realized the plan wasn’t working. The staff would call us in the middle of the night asking how to calm him down. I would hear unfathomable screams and shrieks coming from S as he was causing self-injury. I could hear the pain, terror, and confusion in his cries. The staff didn't know how to manage his behaviors, I couldn't bring him home to hurt his siblings, and I couldn't live with myself as a mother knowing my child was suffering. S didn't understand why he was separated from his family. He was scared and far from home. We had very limited visitation hours, and the whole experience was horrible.  

So, my husband and I decided to bring him home, determined to make life work. During this time, I had a vivid dream I was drowning. This is exactly how I felt during this dark season. My family needed help, and I was going under. We tried to keep the kids safe, but S would still get to them. 

“I had a vivid dream I was drowning. This is exactly how I felt during this dark season.
My family needed help, and I was going under.”

We lived like this for four more years. Four more years. We had over 35 hours a week of professional help in our home, and we still couldn’t keep the kids safe. The guilt was overwhelming. I couldn’t get it right. How could I, an educator, who was able to connect with kids, not be able to help my own children? The screams of his younger siblings were branded in my mind. So we considered our options, wondering which one would be the least painful.

Desperately seeking a solution

A residential treatment facility would not have worked. S’s brief hospitalization was a disaster, S wouldn’t understand the new situation, it was distant from our home, and chances were insurance would deny or discontinue services. There was no stability.  

What if we relinquished our legal rights to S and gave him up as a ward of the state? I am ashamed to say we even discussed this option, but when you are desperate and your options are so limited, you comb every square inch. S would have guaranteed funding to have his basic care needs met. Insurance wouldn’t be able to deny residential care funding. BUT how could we bring ourselves to legally give up custody? We love S and this was never going to be a real option. We just had to talk about it and take it off the table.

We turned our thoughts to having our family separate. A family similar to ours was profiled on Australian 60 Minutes last year. The father stayed with the son, Max, and the mother moved with the siblings into a separate home. We felt this type of arrangement, where my husband lived with S and I stayed with the other kids, could give S’s brother and sisters the safety and stability they needed. The two roadblocks were financial feasibility and the fact of marital separation. We could overcome neither.  

So back to my drive with my daughter. The idea of enrolling our children at a boarding school was both heartbreaking and life-giving. The children needed and deserved to live in a safe environment. Milton Hershey School is a tuition-free boarding school that offers many academic, social, and athletic opportunities to its students. Houseparents and 8 to 12 students live in each of the 160+ homes within the campus neighborhoods. We toured the beautiful child-centered campus, spoke with staff, and witnessed how happy, loved, and well-cared for the students are. Our children needed a refuge from the storm, a place close to home, where we could pour out our love, and they wouldn’t feel abandoned. We prayed for them to be accepted — a hope didn’t come with joy, but with a sadness so tangible it made me feel nauseous for weeks.   

The decision

Sadness, anger, and hope rained down on us as we soaked in the news: they were accepted and we were enrolling them. My youngest responded with, “Six-year-olds aren’t supposed to live away from their mommies.”  My son, with tears in his eyes, blurted, “It’s okay to send me away instead of S, S wouldn’t understand.”  

Van packed up on enrollment day.

Van packed up on enrollment day.

How do you live without those daily hugs and kisses? How does a six-year-old adjust to having someone else reading her a bedtime story and taking care of her when she falls and scrapes her knee? How do you get used to driving by soccer fields where you used to watch practices and games? Separation was painful, but just like Max’s family, we were sticking with the plan. It was the only option.

Surprisingly, in some ways we are now more connected with our typical children because they aren’t living with the threat of violence 24/7. Survival mode is no longer ruling their lives. I don’t have to always be prepared to “save the day” and jump to their rescue. 

S's siblings are transitioning well to life on campus. As his brother stated last week, "It is starting to feel more like home, and I like it." S receives therapy services during the week, and he is making progress. We can challenge and push him a bit more because we don’t have to worry about the other children’s safety. There are fewer triggers in his home environment now, so S is calmer and is having less frequent outbursts. For the first time, I feel my family is finally living life.

Autism families can face incredible hardship. There must be a balance between the daily reality, and what you can change. We had to act, and like other families, had to find the least awful choice.

EF is a mother, wife, and educator living in Pennsylvania. She is passionate about advocating for practical, life-changing help for children and families.         

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.

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

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

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.

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.

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.





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.