“My arms no longer have bruises and cuts, only scars”

Traumas of severe autism and psychosis haunt a mother as she repairs her broken home and heart.

The author with her daughter.

By Robyn Fedrigon

We live in a beautiful home, in a beautiful neighborhood. I am almost done repairing destruction caused by severe autism and psychosis. It’s been five months since she’s been away. I’ve painted just about every room in our home.  I’ve spackled holes in the wall—the size of feet and fists. I remember the tears, as I painted over the last muddy handprint she left above the bathtub. And hanging new blinds from ones that were broken from her trying to, and eloping out of windows. Door frames needing total replacements from the repeated slamming while she was manic. 

We’ve replaced about 20 new door handles throughout the house because if they were locked, she would break in with force. A two-foot hole Ariana dug with her bare hands as four adults tried to stop her mania...finally has grass growing. The field behind our house, from window view, is again filled with water. I have flashes of memories as she ran and went in that mud/water field and no one was going to stop her mania. Even our neighbors feared her. 

I drive down Gittings Road everyday, and everyday I remember racing to save them while she was running, disrobed, and my husband had her restrained on the ground on the side of the road. Cars pulled over out of concern, one being an undercover sheriff. I remember Facetiming her as my husband drove her to school in Milwaukee, and to my horror, she dropped the phone, jumped out of the car in a busy intersection and attempted to enter a home while disrobing, all unfolding in front of my eyes while I could do nothing. 

My life was high vigilance 24/7 for years. And escalating crisis level every year for a few years. The mornings I had to kiss my babies goodbye before she got up so they could get safely tucked away at daycare because she would get “set off” leading to aggression/destruction at the sound of their little voices. Watching my girl being handcuffed by police, at least a half dozen times, what mother has to witness this and know it’s the only option because she’s not safe. 

Countless ER transports for Mental Health Evals and state mental hospital admissions. My arms no longer have bruises and cuts, only scars. I don’t have to wear cover-up jackets to hide what was caused by my own child...not a violent spouse, as many would assume. I’m getting a new SUV this week, my current one has too many memories of my girl kicking at my steering wheel, kicking the trunk window as I was going 65mph down I-94 desperately approaching our exit. So many times a naked 12 year-old in plain sight in my trunk, silently hoping a passerby would call the cops because it was just that dangerous, for all. Watching from my rear-view mirror, while driving, as she was assaulting two aides in the back seat while trying to get to me. 

I don’t know how I am here to tell you what survival mode looks like. And remember, this is only a glimpse. The full context of dangerous situations daily would make a soldier shudder. 

We are in polar opposite now, we are a normal family, our house is back to being a home with no physical sign of the trauma we endured. We survived, she survived and is safe. We had to hire an attorney and take CPS to court to have a judge order them to find and fund residential treatment. She has already been in our state mental hospital all summer on a Chapter 51 court-ordered Mental Health Commitment. We had seven court hearings from May 16 to August 1. She had a denial list two pages long of residentials that said they couldn’t provide the level of care she required. At the end of the hearing judge looked at me and said, “Robyn, nobody should have to get an attorney and come to court in order to get your child help, it just shouldn’t have to be this way.” 

By the grace of God, a Psychiatric Residential Treatment Facility, called Springbrook Behavioral Health in Travelers Rest, South Carolina., five states away, agreed to admit Ariana, for which I am so very thankful because they literally saved our family. Her absence is still profound…but sadly, necessary.

Robyn Fedrigon is a special needs mother of six adopted children based in Wisconsin. She has been a foster parent for the past 13 years. Ariana was adopted by her family as an infant. Her five year-old son also has autism. Robyn wishes to thank NCSA for sharing her story.: “The general public has no idea that an exploding number of families live like this.”

NCSA Letter Opposing Plan to Shutter Developmental Centers in Pennsylvania

National Council on Severe Autism
PO Box 26853
San Jose, CA 95159
info@ncsautism.org

October 7, 2019

Governor Tom Wolf
Office of the Governor
508 Main Capitol Building
Harrisburg, Pennsylvania

Dear Governor Wolf:

The National Council on Severe Autism (NCSA) is strongly opposed to your plan to close the Polk and White Haven State Developmental Centers. 

The autism spectrum is broad, and we represent the growing number of families whose loved ones are significantly intellectually disabled, with minimal or no language. They often suffer from medical comorbidities, most commonly seizures, sleep disorders, and gastrointestinal problems. And, most importantly, many of them exhibit extraordinarily dangerous behaviors that pose grave risks to themselves and/or their caregivers, including aggression, self-injury, elopement, screaming, property destruction, and pica (a compulsion to eat inedible objects). 

We understand the Commonwealth’s need to be prudent in its allocation of limited resources, and why the Developmental Centers seem like obvious targets. But quite simply, closing DCs only provides the illusion of savings: supporting a population that requires intensive, round-the-clock care will impose costs no matter where they are placed. In closing DCs, prohibiting the building of new congregate settings, and drastically reducing the number of Consolidated Waivers (the only Waiver that pays for residential services) – the Commonwealth is placing a strangehold on viable options for this very challenging population. 

The Office of Developmental Programs may report savings, temporarily. But in reality all it is doing is shifting those costs: to aging parents unqualified to provide the necessary level of care; to siblings,who must give up their work; to law enforcement, whose officers may be called multiple times a week to respond to violent outbursts; to hospitals, where it’s become common for severely autistic adults to languish in emergency rooms because of a lack of safe and appropriate placements. Even if that shift is sustainable in the short term, what happens when those placements can no longer manage, or when parents die? With no Developmental Centers to provide the level of care required, our most vulnerable citizens will be forced into grossly inappropriate (yet just as costly, or more so) settings, such as nursing homes or psychiatric wards.

Perhaps you’ve been told that the law requires the intellectually and developmentally disabled to receive services in their communities. In fact, the Supreme Court’s Olmstead decision – touted as an “inclusion mandate” by some disability advocates – explicitly affirms the need for a wide range of residential options to reflect the diverse needs of this population: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings…Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” In his concurring opinion, Justice Anthony Kennedy warned, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.” This is exactly what is happening in Pennsylvania right now.

Mindful of such unintended consequences, the Centers for Medicare and Medicaid Services (CMS) issued new guidance in March that removed language focusing on the physical characteristics of settings (such as size) in favor of an emphasis on client outcomes. In short, both legal precedent and federal regulations reject a “one-size-fits-all” model of service provision for the intellectually and developmentally disabled.

The National Council on Severe Autism urges you to reconsider your proposal and preserve State Developmental Centers for those individuals with intellectual and developmental disabilities who require acute and lifelong care.

We would be happy to meet with you or your staff to discuss this further.

Very truly yours,

Jill Escher
President

“I live in the real world. Not the fake Twitter world.”

An ode to no-nonsense autism dad @autismhoodjay

By Jill Escher

As fairy tales about autism sweep across social media — autism is a “superpower,” autism is just a “type of normal brain” — I wish to express gratitude for one of my favorite tellers of autism truths, a single dad on Twitter who goes by the handle @autismhoodjay. Jay (really Jason) lives in the raw and ragged reality of autism, and fearlessly punches back at ivory tower ideology and online neuro-bullies. With tweets that burst with love for, and panic about, his 10 year-old son Seamus, Jay is a mix of funny, poetic, poignant, philosophical, and scathing.

As his profile says, ”I'm a single dad, my son is autistic, ADHD, epileptic, I tweet what I want when I want…”

Apart from the fact that his refreshingly blunt tweets inject sanity into my Twitter feed, I don’t know much about Jay. But I can glean that he has a job cleaning offices near his apartment, walks with Seamus 22 blocks to the pharmacy to pick up his epilepsy medication, sometimes struggles to pay the rent, and provides all the Paw Patrol paraphernalia an autistic boy could want. It’s an isolating and often exhausting life, haunted by a gnawing dread about the future. I think he speaks for most autism parents with this lament:

But forget the long-term, today’s daily struggles can also be overwhelming. Jay is unafraid to say that autism life can hurt:

When neurodiversity trolls castigate him for choosing to give Seamus therapy (not event ABA therapy, because “I can’t afford that shit, and insurance won’t pay”), Jay shoots back with a sentiment I know many of us have felt:

He also points out the obvious: the trolls aren’t parenting kids with severe autism, and have never walked an inch in Jay’s shoes, or felt his dread.

In a recent video he explains his desperation to prevent all-too-possible disasters that befall autistic people who do not understand rules: https://twitter.com/autismhoodjay/status/1179750307703803904?s=20. He knows Seamus is liable to “end up in the detention hall, or jail or prison… or some rogue-ass cop (could) decide to blow his head off because he don’t understand the rules.” Those who dog-pile on him inhabit an autism fantasy world divorced from the sweat and tears of severe mental disorder, and have the cognitive luxury of trading barbs on social media. “I live in the real world, the real world, not the old fake-ass Twitter world,” he retorts.

Jay also explains to his detractors how his fears for his son are compounded by racism. “My son is mixed, he’s a kid of color. It will break my heart for my son to do something that he doesn’t think is wrong, and it obviously is, and get thrown into a detention hall with a bunch of dope boys or criminals, or some racist cop blows his head off…. This is the kind of shit I worry about, as a black man in America with a kid of color, this is the kind of thing I worry about every goddamn day. And that’s my reality. It might not be yours, but that’s my reality. There’s certain things in this world that this dude has to understand….. People out here have… no clue what autism is. All they just see is a little kid of color acting up doing shit, they don’t know he’s autistic, they don’t know, they just don’t.”

(By the way, expletives are part of the Jay way.)

And now for something else we to which we can all relate:

Hahaha, took the words out of my mouth, but said much better!

You have to love Jay for calling BS on the over-broad autism spectrum, which throws together quirky and capable people with those clearly functionally disabled like his son.

(smh = shaking my head). How many people here wish Jay served on a DSM-5 revision committee? Heck, we would be better off with him in charge than our disgraceful status quo.

Jay knows exactly what’s a stake. A realistic societal understanding of autism that adjusts policies and funding to meet the very urgent needs:

And he defends proper use of the English language to reflect, not obfuscate, reality… because his son is indeed low functioning and disabled. There’s much utility and no shame in using objectively accurate descriptors:

Jay scoffs at the idea that a person with autism can “mask” their impairments, since in the Autism Hood disability never takes a break:

When Seamus started having seizures two months ago, you could see all hell breaking loose in their already fragile lives:

It felt like the trials of Job, autism style. Where will it end? What other shoe will drop? The Autism Hood may be a place of love, but things can get seriously rough, and sometimes you wish you could teleport over there to help him out.

Whether you want to pray for Jay, admire his anti-troll judo moves, or just bask in some refreshing, yet always affectionate, authenticity about autism, visit Jay’s Autism Hood here.

Jill Escher is president of National Council on Severe Autism. You can find her on Twitter at @jillescher.

The Autism Acceptance Hoax

Pretending autism is just a difference instead of an incapacitating disability allows for de-funding of precious social programs, and ultimately the abandonment of our severely disabled.

By Rosanna Armendariz

I am an autistic adult and the parent of an 11 year-old son with moderate-severe autism and significant learning delays. Sadly, I am often reminded that despite the memes we see on pro-neurodiversity Facebook pages, “autism acceptance” and even “autism awareness” mostly apply to the high functioning and successful: the 6 year-old regional chess champion, the 10 year-old science fair winner, the tech wizard in Silicon Valley. One such reminder came a few months ago when my son and I were out for our evening stroll.  

My son often engages in stimming where he twists and contorts his fingers and hands into unusual positions as a means of self-regulation. He is doing this as we walk. An older man behind us chides me because he thinks my son is “flashing gang signs” learned from the “cholos” at school. (All parties are Hispanic or at least Hispanic-looking [I am multiracial], so this isn’t a case of a white person being racist towards brown people.)  

I explained I homeschool and provided assurance that my son has not been hanging around with “cholos” or gang members.  Then I attempt to explain that my son has autism and is merely stimming. He said his grandson has “one of those kids” in his class who is “a whiz at math.” He wondered if my son had similar exceptional abilities.

The author and her son.

I am by now unsurprised that the average layperson has such an unrealistic view of autism. The representations of autism in the media and popular culture are increasingly skewed towards maximum achievers who are virtually indistinguishable from the non-autistic population. The fictional “Good Doctor” is ubiquitous. And I believe this is by design. If autism can be rebranded as not a serious disability but “a different ability” or even a “super power,” as teen climate activist Greta Thunberg asserts, then the perceived need for support is greatly diminished. Ultimately, I believe it’s all about the bottom line: think of the money we can save by de-funding critical disability services and programs and celebrating “inclusion” and “rights” instead.

Coupled with the rebranding of autism is the ridiculously wide diagnostic label of Autism Spectrum Disorder or ASD found in the DSM-5. I’m not a doctor but anyone can see the label is so wide as to be absurd. It includes celebrities with Asperger’s like Dan Aykroyd, Susan Boyle and Thunberg along with the severely autistic nonverbal 20 year-old in diapers who bites his arms and smears the carpet with feces. Increasingly the latter is pushed into the shadows and made invisible, while the former is celebrated as the real autism or “#ActuallyAutistic.”  

My son and I are both considered autistic, yet our challenges are very different. I have struggled all my life with significant sensory processing issues, motor coordination problems, and social communication impediments. As a result I am unable to drive a car, have been fired or forced to resign from numerous jobs, have difficulty maintaining relationships of any kind, can’t swim or ride a bike. Nevertheless, I am able to live independently, completed college and graduate school, married and had a child.

My son, on the other hand, while thankfully not at the most extreme severe end of the spectrum, is nevertheless unlikely to replicate my meager accomplishments. At 11 years old he still requires assistance with basic daily tasks like bathing, teeth brushing, and dressing. He can make requests and express preferences in simple four-word sentences. And while he can recite entire episodes of Blue’s Clues from memory, he can’t have a conversation. He can read and spell at a third-grade level but when in front of a keyboard types out lines from Blue’s Clues and not deep thoughts like prodigious nonverbal autistic Carly Fleischmann.  

“My son will depend on social programs which are becoming increasingly scarce or nonexistent.”

With my disastrous employment history and the fact that I’ve struggled financially my entire adult life, I doubt I’d meet the current bar of autistic excellence. My son never will. As a result, I have spent many sleepless nights worrying about his future, especially what will happen to him after I die. I’m not wealthy and can’t put millions of dollars into a trust fund to provide for his needs after I’m gone. My son will depend on social programs which are becoming increasingly scarce or nonexistent. I toss and turn at night imagining my sweet child living on the streets, dying of exposure to the elements, getting hit by a car or murdered by criminals.

“As a society, we must not push the less glamorous manifestations of the disorder so far into the shadows that they are no longer recognized as autism.”

Realistically many with autism will never obtain competitive employment or live independently (even some who are considered higher functioning). As a society, we must not push the less glamorous manifestations of the disorder so far into the shadows that they are no longer recognized as autism. My son’s life, and so many others, hang in the balance.      

Rosanna Armendariz was diagnosed with Asperger’s Disorder at age 40. She lives in El Paso, Texas where she homeschools her 11 year-old son with moderate-severe autism. 

To Escape My Autistic Son’s Violence I Ended Up Living in a Tent

“So I left. With no money and nowhere to go, I ended up living in a tent, afraid to return home to my autistic son.”

By Heidi Brown

My 21 year-old son, I’ll call him B, is about 6 feet tall and 220 pounds. Most of the time he is a sweetheart, but like the flick of a switch, he can start to rage, breaking everything in his path, including me.

The public face of autism is young and cute, but when our little boys grow up, with large muscles and no impulse control, they can be scary as hell. After all we have been through, I am not ashamed to say I am afraid of my own son. This is the story about how autism made me homeless, reduced to living in a tent.

B has a history of aggression that started as a child. For example I can recall him pulling his sister’s hair, and later trying to bash her head in with a rock. Of course we tried a variety of interventions and medications to help him, but face it, as our kids grow up, and if you have public-benefit insurance, good care is hard to find.

Last June, in response to a new medication, B started having really bad seizures along with vomiting, he was miserable. With my ex-husband living elsewhere and our daughter away at college, I lived alone with B in our apartment. I knew I was vulnerable but what choice did I have? One night he attacked me for four hours straight. Now, I have done 13 years of karate and know how to defend myself, but I couldn’t fend him off anymore. My hair was drenched in sweat, I was bloodied and bruised. B broke everything, I can still see the batteries flying out the phone, the pictures falling off their hooks, their glass shattering on the floor. I screamed out the window, “Help me! Please somebody call 911!”

About 20 firemen, paramedics and police ended up in my apartment, after they called for more people for help. My building’s elevator was broken, so they put B in a type of body bag to take him down the stairs, and I remember his head bashing against the railing. I wailed with anguish.

After the ER he was admitted to a nearby psychiatric hospital, which I can only describe as the pit of hell. It has the whole array of mental illness and drug use, and people like B don’t quite fit in this population; he is very sweet and angelic, when he’s not trying to kill me.

Early in the morning I went to the hospital to try to get B back. After a long wait finally B comes out jumping up and down smiling, looking like an angel. In his bag I noticed the discharge papers B had “signed” indicating he “understood” the doctor’s orders. Of course he lacks the cognitive ability to understand of word of it, it was a charade for the hospital.

I could not be part of the discharge process because he is a legal adult and I am not his conservator. One might ask why I have not conserved my son. Let me explain: I cannot take on a legal responsibility I have no ability to discharge. Of course I want more than anything to keep B and others safe. But I can’t. It’s not physically possible, and I don’t want to be held liable for violent acts I cannot possibly prevent.

There are other ways to get medical information and help make medical decisions, without the liabilities that come with conservatorship, so I’m pursuing those.

“The longer I was alone caring for B, the more terrified I became and the less wind I had under my wings.”

So after this, B and I were again living together in this apartment just doing the best we could. Obviously it was a fragile situation, but again, I had no options. I have tried every treatment and sought all manner of help for my son. I tried to give him a good life in that apartment, even when he would hurt me, for example in May when he cracked my head open with his cell phone. 

Some autism parents need to hide all the knives, but it’s not like that with B. He can’t premeditate, the rages are very all-of-a-sudden.

So let me be honest. I burned out. The longer I was alone caring for B, the more terrified I became and the less wind I had under my wings.

I took a two-week sanity break from B while his father moved in to watch him. When I moved back in, last month, my son indicated his toe hurt, and I could see he had an ingrown toenail. I took him to a podiatrist, the most compassionate doctor we have ever seen, who managed to remove the nail and give him antibiotics for the infection.

But unfortunately B had a terrible reaction to the antibiotics. In his misery he beat me up. There was blood everywhere, I had a black eye. Afraid to call 911 and go through the psych hospital nightmare again, I asked his father to come back, and I would again leave home.

So I left. With no money and nowhere to go, I ended up living in a tent, afraid to return home to my autistic son.

Just the other day I found an inexpensive room to rent, and after more than a month of being homeless it’s a relief to finally have a bathroom and a kitchen, and a roof over my head where I don't have to worry about freezing at night or how to eat with a cooler. But I am exhausted.

What happens next with me and my son, I don’t know. We are living day by day.

I am sharing my story not to ask for pity or sympathy, but because I want people to understand the terrible vulnerability of autism families, particularly those living with severe autism. They face unthinkably traumatic circumstances, through no fault of their own. To anyone who may judge us, I say please walk in our shoes, even for a day. 

Heidi Brown is the pseudonym of an autism mom who lives in the San Francisco Bay Area.

Editor’s note:

Excerpt from the Handbook for Conservators, 2016 Revised Edition, by the Judicial Council of California

4.9 Keeping the Conservatee from Causing Harm

It is your responsibility to take whatever reasonable steps you can to stop the conservatee from hurting someone or damaging someone else’s property. Your lawyer can suggest courses of action. 

For example, if the conservatee has a driver’s license, but you have seen the conservatee drive dangerously, you should do the following:

■ Let the conservatee’s doctor know so that he or she can provide the appropriate information to the Department of Motor Vehicles so that it can start the process of canceling the conservatee’s driver’s license.

■ Consider having the conservatee’s vehicle disabled so that he or she can’t use it. Consider also storing the vehicle where the conservatee can’t get it, or even selling it before it depreciates, if the conservatee will not be using it in the foreseeable future. Coordinate storage or sale with the conservator of the estate, if he or she is a separate per- son.

■ Arrange for another means of transportation, so the conservatee doesn’t need to drive. For example, you might buy a bus pass or taxi coupons for the conservatee or arrange for community van service, if it’s available.

If you don’t take all reasonable steps that you can to stop the conservatee from causing harm, you may have to pay out of your own pocket for the cost of any damage to people or property.

You or the conservator of the estate may be able to obtain insurance that will reduce the risk that you or the conservatee will have to pay out money for such harm. If you are worried that there is a serious risk that the conservatee may cause harm, check with your lawyer. 

"Some of the Realities Are Just Too Heartbreaking": A Conversation with UK Autism Advocate Thomas Clements

During a recent visit to London, NCSA President Jill Escher had the opportunity to meet up with Tom Clements, the author of several books and commentaries about autism, and a strong advocate for families affected by severe autism. They discuss today’s overbroad definitions of autism, hiding heartbreaking realities even while striving for truth, and the urgent need to focus on the mounting adult autism crisis, among other topics.

Tom, left, and his brother Jack.

A gifted writer, Tom was diagnosed with Asperger’s in his childhood, and his older brother Jack has a severe form of autism. You can find some of Tom’s writings here:

What is autism? How the term became too broad to have meaning any more. He writes: “I am fluent in four languages and have been able to live abroad. My younger sibling, also diagnosed with autism, requires full-time care. It’s apparent that we have very different conditions.” In The Guardian.

The Autistic Buddha: My Unconventional Path to Enlightenment, on Amazon

The Autistic Brothers: Two Unconventional Paths to Adulthood, on Amazon

The conversation is 30 minutes long:

Out of Sight, Out of Mind: The Erasure of Severe Autism

By Jeffery L. Hayden, PhD, BCBA-D and Jane McCready

“The objective difference between people with autism and the general population will disappear in less than 10 years. The definition of autism may get too vague to be meaningful.” 

—Dr Laurent Mottron, Université de Montréal 

“We found a marked decline in the inclusion of people severely affected by autism in clinical research, even using a very liberal definition of severity.” 

—Matthew Siegel, Tufts University School

Three recent studies have demonstrated that research has been increasingly marginalizing individuals with severe forms of autism spectrum disorder (ASD). 

In an article published last month in JAMA Psychiatry, Rodgaard and colleagues examined the scientific literature from 53 years, 1966 through 2019, to determine if and how the differences between ASD subjects and control (normal) subjects changed over time. The authors also examined how these changes correspond to changing definitions of ASD and the associated increases of those diagnosed with ASD. 

They found that the differences between those with and without ASD has decreased over time, in other words from what was once a homogenous group to a heterogenous one. This is worrisome, they said, because the growing heterogeneity may create challenges for research. They said:

“[G]radual changes to a diagnostic category, such as autism, and blurring of the distinction between autistic traits and autism could potentially affect our ability to advance mechanistic models of the condition. The belief within autism research that large heterogeneous populations are preferable compared with small narrowly defined ones in the search for scientific truth may be open to question.”

In other words, by diluting what we mean by “autism” we are losing the ability to find meaningful commonalities in biology and treatment, to the detriment of those with ASDs. What may be true for severe autism may be very different for those with HFA, and lumping together drowns out distinctions.

Research on severe forms of autism is also increasingly marginalized from a raw numbers perspective. Stedman and colleagues earlier this year investigated how much those with severe forms of ASD are included in treatment studies. The study authors examined 367 treatment studies published in the scientific literature in the 22 year period between 1991 through 2013. The study analysis found that with each year, starting with 1990, there was a 16.5% decrease in representation of those with severe forms of ASD in published treatment studies. Starkly put for the chances of any research getting done with those at the severe end of the autism spectrum: “the proportion declined substantially from more than 90 percent in the early 1990s to just 30 percent in the 2010s.” The authors state that without full representation in research of the entire spectrum of ASD, we may “leave behind those with arguably the greatest need.”

Fading away: As research becomes increasingly saturated with cases of milder forms of autism, severe autism has become marginalized.

In March this year, a UK study pointed to an even worse situation. Researchers from the University of Exeter and University College, London examined all high quality autism studies worldwide in a particular year, 2016, and discovered that only 6% of participants were autistic people with a learning disability. The exclusion of half of the spectrum was near complete.

Together, these three studies should serve as a clarion call to those who work with, advocate for, and/or love individuals with severe forms of ASD. Representation and research are key to effective advocacy, and with the boundaries of what is and what is not ASD becoming less clear, those with severe forms of ASD are at risk of getting lost in the mix.

The alarms are ringing.

References:

Rodgaard E, Jensen K, Vergnes J, Soulieres I, and Mottron L (2019). Temporal changes in effect sizes of studies comparing individuals with and without autism: A meta-analysis. JAMA Psychiatry. https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2747847.

Stedman A, Taylor, B, Erard, M, Peura, C, and Siegel, M. (2019). Are children severely affected by autism spectrum disorder underrepresented I treatment studies? An analysis of the literature. Journal of Autism and Developmental Disorders, 49, 1378-1390.https://doi.org/10.1007/s10803-018-3844-y

Russell G, Mandy W, Elliott D, White R, Pittwood T, Ford T. (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis. Molecular Autism. https://molecularautism.biomedcentral.com/articles/10.1186/s13229-019-0260

https://nouvelles.umontreal.ca/en/article/2019/08/21/is-it-autism-the-line-is-being-increasingly-blurred/

https://www.disabilityscoop.com/2019/03/19/kids-severe-autism-overlooked/26209/

Emergency Rooms Can’t Handle Severe Autism. What Should We Do?

By Kim Christensen

I have a 20 year-old daughter with severe autism. Every day is difficult, but I think those occasions when we need to seek emergency medical treatment are a special kind of hell.

Two weeks ago I unknowingly closed the utility room door on her pinky finger. She didn’t make a sound, since high pain tolerance and severe autism often go hand-in-hand. Once I realized what had happened and unlocked the door, her finger was purple & bent awkwardly at an angle. 

It took a few minutes before the pain registered but then she started screaming and hitting her head. She put her finger in her mouth, bit down and popped the finger back into place. She was hysterical, screaming and in a lot of pain. We rushed her to the Emergency Room and it took two people to restrain her for X-rays of her hand. Her finger had been dislocated and there was a minor fracture.  

She was again restrained so staff could splint her finger & bandage it up. Once the splint was on, she started beating her bandaged hand against her head and trying to remove the splint with her mouth. She bloodied her nose in the process and it was decided to remove the splint before she injured herself any further. The only other option was to cast it all the way up to her elbow. The Physician’s Assistant felt that would be too traumatic, so we opted to let it heal on its own with no support. We gave her over the counter pain meds and once the swelling went down, it didn’t seem to bother her. It isn’t straight and I’m not sure how much range of motion she has now in that finger. The PA said she might develop arthritis in it when she gets older.

A few years ago she developed cellulitis on her ankle, which we later determined was the result of being stung by a bee in our backyard. She doesn’t have the verbal skills to tell us she was stung by a bee and with her high-pain tolerance, I doubt she felt it. She woke up the next day with what I thought was a virus — fever, irritability and difficulty staying awake. 

“It took six people to restrain her for the blood draw.”

Fortunately, she was downstairs with me when she fell asleep on the floor. She rolled over on her side and I noticed a large red spot on her ankle. I called my husband and he came home from work to take us to the ER. Staff at the ER insisted on a blood draw before starting any treatment. It took six people to restrain her for the blood draw, and when it was over, she attacked the woman in the bed next to her (but at least that got us into a private room). The standard treatment for cellulitis, which can be life-threatening, is intravenous antibiotics. We explained to the ER staff it would be impossible for her to tolerate an IV treatment without being sedated. ER staff ultimately decided on a shot of antibiotics, followed by a 10-day oral treatment. She recovered, but once again her behaviors interfered with the best course of treatment.

Shortly after the cellulitis incident she had her first seizures. We were at the gym and her aide started screaming at me to come help. My daughter was sitting at a table, her lips were blue and drool was pouring out of her mouth. We put her on the floor and an employee called 911. When the EMTs arrived, they checked her blood pressure, temperature & her blood sugar. 

“She tossed us around the parking lot like we were rag dolls, throwing her body against the ambulance and beating on it with her hands.”

She started coming out of the seizure but they recommended she be transported to the hospital since it had never happened before. She walked out of the gym with light physical support, but once she realized we were trying to load her into an ambulance, she fought like her life depended on it. She tossed us around the parking lot like we were rag dolls, throwing her body against the ambulance and beating on it with her hands. The EMTs eventually had me sign a medical release and suggested I transport her to the ER myself. Since she couldn’t undergo an EEG without being sedated, we were released from the ER and told to simply follow-up with a neurologist.

According to Kaiser Health News, the number of people with autism seen in ERs nationally nearly doubled from 81,628 in 2009 to 159,517 in just five years. The number admitted also soared, from 13,903 in 2009 to 26,811 in that time period.

Emergency medical care is not designed to deal with severe autism behaviors. Ripped stitches. IVs torn out. Screams and attacks against staff and patients and property. Emergency care and autism can be a volatile combination. So my question is, what experiences, good and bad, have you had with severe autism and emergency medicine, and what can we do to improve this form of medical care for our children? Their lives may depend on finding these answers.

Kim Christensen is the founder of Pathways to Employment, and lives in Granite Bay, CA.

"Everyone Is Employable," Except the Severely Disabled?

An enterprising autism mom creates a nonprofit to provide employment for those considered unemployable. But the future looks bleak for programs like hers.

Just because someone with a disability may have low productivity doesn’t mean they should be jobless for life.

By Kim Christensen

I’m mom to a 20 year-old daughter with severe autism. She has worked hard all of her life to acquire the limited skills that she now possesses. She is quickly approaching “the cliff,” the federal age limit of 22 when her school based support services will terminate. I see it rushing towards us like a speeding train and I question myself daily if I’m doing enough to prepare us both for it.

She is low-verbal, has a vision impairment, uncoordinated gait and her fine motor skills are pretty much non-existent. She also has behaviors and severe inflexibilities in her daily routines, but she possesses an infectious smile, and can hug her way into the good graces of perfect strangers.

Like all parents, I want her life to be meaningful, purpose-driven and for her to be a contributing member to society, in whatever way suits her. When I started researching adult services a few years ago, however, I saw few resources available, particularly for someone who is low-functioning with intense behaviors. But one day I had an “aha” moment when reading about a laundry service that employs adults with developmental disabilities. It seemed like the perfect match for her, and, given her obsession with washing machines, I knew it could be a dream job for her.

So two years ago I founded a nonprofit in the hopes of creating jobs for those who are considered unemployable. Our tagline and mission is simple: “Everyone is employable.” In our laundry business, my daughter and another developmentally disabled young woman now work side-by-side one day a week at a local laundromat, and then we all fold the linens together in my home. We have one corporate account, a sweet businesswoman who sees the beauty in what we are trying to achieve.

But what I dreamed of—a meaningful job and a paycheck—hasn’t panned out. The profit margin on the business is extremely low, and to the extent I could possibly grow the business, new federal bills, the Raise the Wage Act, and the Transformation to Competitive Employment Act, (Raise the Wage has already passed the house) would put an end to non-competitive employment, a change that would hit the severely disabled particularly hard. The reality is that despite the accommodations we have made (like a special folding table to help her) she still needs lots of assistance to fold anything. Under the new laws, I would have to pay all of our developmentally disabled workers minimum wage, whether it takes 15 minutes to finish, or in my daughter’s case, two hours. And that’s in addition to paying job coaches and supervisors (so far we’ve all been volunteers). It is simply not financially feasible to pay a person with low productivity minimum wage on such a low-margin business, even if she is my own daughter. That’s the heartbreaking reality.

Under the new bills, only the high-functioning would be employable, making a mockery of our tagline. Now our focus is to put our business income into starting an adult daycare center with some volunteer employment training focus. It’s not the shiny happy story I aspired to a few years ago.

Jobs without income can bring some benefits, like the feeling of accomplishing a task, being a part of a team, and having friends she looks forward to seeing. But it denies our children the right to real work, and to income that could help them and their businesses. Non-competitive employment must be a fully accepted and flourishing option for the severely disabled. It’s heartbreaking and nonsensical to crush the hope that “everyone is employable.”

Kim Christensen is the founder of Pathways to Employment, and lives in Granite Bay, CA.