Ways to Honor the Late Feda Almaliti and Her Son Muhammed

Remembering and Honoring Feda and Mu

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[Event and virtual event information to be posted soon]

Address for letters and other mail:

Salah Family
1141 Apple Ave
Hayward, CA 94541

Post your respects, memories, and photos online on Forever Missed:
https://www.forevermissed.com/feda-mu/about

Donations:
We know that Feda would have appreciated donations to any of the following in her and Mu's honor.

National Council on Severe Autism
Feda was so proud to have been a founding board member of the NCSA. She was devoted to bringing the realities of severe autism to light, to help forge desperately needed advances in programs, care and national policy.
https://www.ncsautism.org/donate

Autism Society San Francisco Bay Area
As Vice President of SFASA, Feda loved creating local events to help her fellow autism families. These included the SFASA Pool Parties, Autism on Tap series, and of course the annual conferences. Feda Fund donations will be used toward creating future events Feda would have loved.
https://www.sfautismsociety.org/donate.html

Autism Law Summit (Feda Almaliti Scholarship Fund)
Feda had hundreds of autism friends around the country whom she knew because of the annual Autism Law Summit. Feda wowed the audience at the 2018 Summit with a luncheon keynote that had everyone laughing and crying at once. In her honor, the Autism Law Summit has established the Feda Almaliti Scholarship Fund to bless one or more parent advocates with a scholarship to attend the Summit.
https://www.paypal.com/paypalme/fedascholarshipfund

Autism Mental Health Insurance Project
Feda got her start in autism advocacy by fearlessly pushing for insurance reform in California, to expand access to behavioral health treatments for all affected by autism. Your donations will go towards a scholarship fund to assist low income families with advocacy services. Feda served on the board of directors and helped to guide its vision from 2013 until her death.  
www.mhautism.org

Hear and see other remembrances of Feda and Mu:

National Public Radio'sAll Things Considered here

NCSA Facebook Page

Autism Science Foundation Podcast here(by Alycia Halladay)

East Bay Times here

CBS San Francisco here

NBC Bay Area here

Daily Mail (UK) here

Censoring autism: We must resist the crusade to quash severe disability

No one questions putting Greta Thunberg’s autism in the limelight. It must be the same for all forms of autism, writes Tom Clements.

High functioning autism, represented here by Greta Thunberg, and low functioning autism, represented by the author’s brother Jack, both deserve places in the public consciousness. “For all practical purposes, these manifest as two completely distinc…

High functioning autism, represented here by Greta Thunberg, and low functioning autism, represented by the author’s brother Jack, both deserve places in the public consciousness. “For all practical purposes, these manifest as two completely distinct conditions, despite the ‘autism’ label".”

By Tom Clements

Autism, like any disability, varies considerably in its severity. Whilst some people have visual impairment, for example, others are completely blind. But as certain sections of the advocacy community reject the descriptors of “mild” and “severe” autism as overly medicalising and discriminatory, the vast majority of us acknowledge that distinctions between higher and lower levels of impairment are simply a reflection of reality. Of course, that’s not to say that such descriptors convey the entire truth of an autistic individual’s experience and nor does it mean that those with mild autism necessarily have an easier time of it. In fact, in certain respects those with mild autism often suffer to a greater degree psychologically, not least because they often possess far greater insight into their condition and are more intensely aware of haunting feelings of loneliness and inadequacy. 

Nevertheless, the characteristics can be like polar opposites: a highly articulate and strategic Aspie like Greta Thunberg on one hand, and those who can barely utter a single word or attend to their basic needs, like my younger brother Jack, on the other. For all practical purposes, these manifest as two completely distinct conditions, despite the “autism” label.

The recent drive by neurodiversity advocates to discard functioning labels has led to some absurdly counterfactual statements by certain self-advocates about the nature of autism itself. The refrain that “all autistic people are equally autistic” is often repeated nowadays on social media, despite of course being demonstrably untrue. San Francisco-based advocate John Marble, a prominent neurodiversity proponent and erstwhile advisor to Barack Obama, even went so far as to say in a now infamous tweet that “THERE’S NO SUCH THING AS SEVERE AUTISM, just as there’s no such thing as ‘severe homosexuality’ or ‘severe blackness.’” 

Yes, the notion that all human life is of equal worth is, and must remain, the foundational principle of our civilisation as underpinned by Western Englightenment values. However, it is biology and not “systemic ableism” or some other external bogeyman that gives birth to the endless inequalities of functional outcomes we see among human beings. To admit that some people are less capable or intelligent than others might not be to everyone’s taste, but functional inequality is an obvious, conspicuous truth, particularly in autism. 

“To deny (severe autism) is potentially very dangerous as it paints a false image of the condition that could lead to policymaking that is counterproductive to the needs of the severely affected. ”

To deny this, regardless of whether the intentions behind such a denial are good or bad, is potentially very dangerous as it paints a false image of the condition that could lead to policymaking that is counterproductive to the needs of the severely affected. One such belief, championed by the likes of the Autistic Self-Advocacy Network, is that all autistic people, even those with substantial cognitive and verbal impairment, fare better when treated as “merely different” and thus not in need of specialized forms of housing, supervision, employment and day activities. Conflicts with neighbours, susceptibility to elopement and an unhealthy absence of structure and supervision naturally renders such a prospect terrifying to many parents of children and adult-children on the severe end of the spectrum. Ignoring the vast gulf between mildly autistic people capable of independent living and severely autistic people who are heavily reliant on others, and often possessed of dangerous and disruptive behaviours, threatens the latter with virtual abandonment.

The crusade to abolish pathologising terms from autism discourse coincides with the more recent drive to censor video evidence of severe autism. For example, a petition started 3 months ago calling for YouTube to ban videos of autistic children’s meltdowns is close to garnering 100,000 signatures thanks to a sustained campaign by neurodiversity activists to frame such videos as “abuse.” But contrary to the shrill hyperbole of activists, such videos aim not to “humiliate” or “abuse” kids, but to show just how devastating severe autism can be; they are often posted out of desperation as a last resort, an anguished cry for community awareness and assistance. 

Whilst our media is saturated with mawkish portrayals of mildly autistic eccentrics, the harsh realities of severe autism are practically non-existent, save perhaps for the occasional documentary made by independent film-maker or journalist (Louis Theroux’s “Extreme Love: Autism” is especially good). Activists must stop being squeamish about severe autism. To erase the videos would in a sense equate to a kind of erasure of severely autistic individuals, the vast majority of whom cannot tell their story or communicate their suffering without the assistance of a parent or family member advocating for their needs. The anti-video petition is nothing less than an attempt to render an entire segment of autism practically invisible to the wider society.

Functioning labels are valid, public awareness of severe autism is valid, and no amount of fantasy-fueled histrionics can change that. Indeed, given the ever-mounting global autism crisis, these distinctions and stories warrant even greater emphasis.

Tom Clements is a British autistic writer. He is the author of The Autistic Buddha and The Autistic Brothers.


Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

Confessions of an autism father: a seesaw of despair and hope

The father of an autistic boy with severe behaviors who needs 24/7 care moves from paralyzing fear toward a sense of purpose

The author’s son Wyatt, right, with his two brothers.

The author’s son Wyatt, right, with his two brothers.

By Joshua Trainum

People would always ask me what exactly is our nine year-old son Wyatt’s condition. I would list a bunch of symptoms: non verbal, sensory-seeking, wears a diaper, self-harming, destructive with OCD tendencies. The easiest definition is low functioning autistic, but severely intellectually disabled certainly applies too.

My family has had an interesting 10 years. When Mariel was pregnant with the twins we knew from day one that there was something wrong with the baby B. He was small — twins are high risk but at our first appointment at seven weeks we were informed that something was not quite right but he could catch up. A few weeks went by and I had hope, you have such great hope for your children when you find out you are about to be a parent. I had hope when he was trending smaller in utero, I had hope when we were at the maternal and fetal medicine specialist getting sonograms twice a week. I had hope when they told us that baby B had stopped growing and the cord blood was reversing and we had to make a life and death decision. I had hope when Wyatt came out of the room at two pounds looking like a malnourished baby bird. 

We decided on the name Wyatt after much deliberation because it meant little warrior. He was our little warrior. We had hope when we took Zeke home from the hospital after 18 days and had to leave Wyatt in there to fight and grow for another 2 months. I had hope that when he took to the bottle and got off the feeding tube and started gaining weight. I had hope when at five pounds we could take him home from the NICU and we had the first night all together. I had hope that we wouldn’t get such little sleep the first year because the twins were on different sleeping schedules.

He was around two when he started not looking us in the eye and just suddenly stopped meeting milestones. I knew then it was serious but I had hope when his body had a limitless desire to find stimulation that we may find help. Around three he got so big he was able to crawl out of the crib; this is when the years of sleepless nights began. Wyatt would jump and stim in our bed for hours. We used to try to get him down by laying next to his crib and rubbing him for hours so he would fall asleep. I actually think we were on mattresses on the floor because he had jumped so much he broke his crib apart. This is probably the first piece of furniture I remember him breaking, but it would not be last. We suffered many sleepless nights and I was grateful to be able to travel for work. I got to escape by going to work. There is so much more to say but my amazing partner is an absolute saint. 

The Trainum family.

The Trainum family.

This is about the time I lost hope…. I knew Wyatt would be a lifelong responsibility, but when explaining our situation people would always say don’t worry they will be able to figure something out. I would probably have said the same thing before Wyatt. The fear, bitterness, anger is paralyzing. I don't know how to explain it, but it was eating me up from the inside very slowly. We had a new baby by now, and the grace of my partner and foresight to insist this was the best for my family was probably what saved us. Baby Gabe and his relationship with Zeke and how both of them are the sweetest boys is probably the sole reason I did not go down a dark path. 

I was having troubles at work, I was angry and that anger and bitterness spilled over in other areas of my life. The task of getting Wyatt to have even a tiny chance of something just a little better seemed like an impossible task. We could sacrifice the well-being of our other children and pour every resource into private care for Wyatt, but to what end.

We live in an age where technology was available to save Wyatt’s life but where it fails to help him over the long term. 

Despite all this, I believe I am up to the task of being a better advocate for my baby Wyatt. I love him even though sometimes he is the absolute most draining thing. We all have fires to walk through. But we can all find purpose through the pain. There comes a time in your life when you confront a reality that is so unacceptable it leaves a scar on your soul. That scar is painful, but it has forced me to confront my story and face it without fear. This has been a turning point in my life, from struggle to peace, purpose, and strength. With purpose comes vision, with vision comes community, and with community comes empowerment.  

Joshua Trainum is the father of three boys. He lives in Florida.

A Renowned Physician Calls On Media to Acknowledge Autism's Brutal Truths

The profound impairments of autism are also "fit to print,” and acknowledging them is a crucial matter for public policy, writes Lee Wachtel, MD.

Kennedy Krieger Institute’s Neurobehavioral Unit serves patients with autism and other developmental disabilities.

Kennedy Krieger Institute’s Neurobehavioral Unit serves patients with autism and other developmental disabilities.

By Lee Elizabeth Wachtel, MD

Two mothers of autistic children whose stories were recently in The New York Times bring to the forefront an ideological battle that has been escalating for years in the world of autism.  We could call it Disability versus Diversity. Disorder versus Gift. Change-worthy versus celebration-worthy. It is true that autism is recognized clinically as a spectrum. Yet the capacity for our society to consider different perspectives within that spectrum is incongruously limited. 

The New York Times published the 2020 party line: we only learn and grow from autism, and a pox upon anyone who suggests that some aspects of autism are not laudable. I am not an autism parent, but I have led for the past 17 years an inpatient hospital service given over to autism and other developmental disorders. I would agree 110% that autistic children and their families are very special, and I readily confirm that their contributions to our world are spectacular. But I also bear witness to the brutal truth of the profound psychiatric, behavioral, cognitive and medical challenges that afflict some individuals with autism. 

And yes, afflict is the correct word, because when an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied. One of the mothers writing in The New York Times readily recognized that her autistic son’s seizures were problematic rather than perfect and sought treatment. If you don’t believe me that many autistic children need and deserve treatment and related care, ask the mother who wanted a professionally-painted scleral shell for Mother’s Day so her daughter wouldn’t appear so disfigured after losing an eye to self-injury. Or the mother who lay in an ICU bed and held her dying autistic son after a brutal beating in a totally inappropriate setting. 

Children with autism will spend far more years as adults with autism, and the needs of some of those individuals will remain at very high levels of intensity across the lifespan. Those citizens, and their families, merit just as much attention and care as the autistic youngsters at the other end of the spectrum who typically have fewer cognitive, psychiatric and behavioral comorbidities, and may very well be capable of using their unique autistic mind as a “superpower” to solve Fermat’s Last Theorem or win a Nobel Prize. This is a crucial matter of public policy in our country, and we cannot afford to cater solely to one group’s agenda.

Sadly, American society has recently deteriorated into a cataclysmic “cancel” culture where anyone who dares to voice an alternate opinion – particularly one that is unpopular, points out fragilities or challenges the party line – is publicly shamed and ridiculed, and erased from the agenda. This is blatantly apparent in the world of autism and developmental disability, where if it isn’t a perfect or magnificent gift, we don’t want to hear about it, and certainly don’t want to address it or consider change, even when lives are at stake. While we haven’t yet exiled the autism dissenters to the gulag, the consequences of cancellation have banished the honest needs and plight of some to the figurative taiga, leaving the most vulnerable in precarious positions. 

We honor the 30th anniversary of the Americans with Disabilities Act during an unprecedented struggle against both COVID-19 and social injustice in our country. 

Let’s be brave, and not leave anyone out.

Lee Elizabeth Wachtel, MD is the Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.

"Illness is a social construct, the medicalisation of human diversity": A parody


Titania McGrath is a parody account on Twitter written by British comedian Andrew Doyle. Today “Titania’s” tweets stab right into themes seen in the baffling movement to normalize autism, take it out of the “medical model,” and render is a mere neurodiversity. We appreciate the dripping sarcasm and good laugh, Titania!

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@TitaniaMcGrath Activist. Healer. Radical intersectionalist poet. Selfless and brave. Buy my books.

Aug. 12, 2020

MEDICAL SCIENCE IS OPPRESSIVE: IT MUST BE BANNED (thread) For too long, so-called “doctors” have bullied and dehumanised those who do not conform to their perceptions of “wellness”. They have tried to “fix” those with non-healthy identities via “treatment”. No more.

[1 of 11] What we call “illness” is a social construct, defined negatively against its antithesis “wellness”. Society, in other words, has created the category of “illness” as a means to impose power on those who do not subscribe to cultural norms of what it means to be “well”.

[2 of 11] “Health” and “wellness” are mere taxonomies of privilege, inculcated by the hegemonic and oppressive discourses of “medical science”. Referring to someone as “well” or “ill”, “healthy” or “unhealthy”, is simply the medicalisation of human diversity.

[3 of 11] The hierarchical dichotomy of “well” and “ill” are co-constituting, each one creating the other through a process of performativity. Moreover, science is an irredeemably white, patriarchal, cisnormative fiction that exists only to disempower marginalised identities.

[4 of 11] Just as heterosexism posits the supremacy of heterosexuality to queerness, healthism situates wellness as the default experience of humanity in order to stigmatise illness as inherently deviant.

[5 of 11] These assumptions deny the performative nature of illness and wellness towards a neoliberal goal: individual autonomy as a means to secure labour (i.e., a “healthy workforce”) for the benefit of the capitalist system.

[6 of 11] In order to dismantle oppressive medical power structures, we must do the following: • Close all hospitals, surgeries, clinics, and any other institutions that perpetuate healthism.• Destroy all medical textbooks and uplift non-scientific ways of knowing.

[7 of 11] • Reject all forms of science as white heteropatriarchal queerantagonistic constructs. • Ban the study of all branches of medicine (anatomy, biochemistry, endocrinology, genetics, immunology, neuroscience, pharmacology, etc).

“Rebuke those who claim to be ‘in need of medical attention’ as identity-traitors.”

[8 of 11] • Re-educate children to embrace and celebrate illness rather than seeking a “cure”. If a child is “diagnosed” with a “disease”, this narrative must be countered by teaching them to actively engage in disrupting the cultural norms of “wellness” and “illness”.

[9 of 11] • Rebuke those who claim to be “in need of medical attention” as identity-traitors. (Such internalised healthism is a form of complicity with systemic medicalisation.)

[10 of 11] • Resist the oppression of healthnormativity in everyday language. Criminalise pleasantries such as “How are you?” and “Are you well?” • Stop taking aspirin. FIN.

[11 of 11] You can follow @TitaniaMcGrath. (Source: https://threader.app/thread/1293556090895032322)

"I cannot survive the endless aggression"

When autism parents are attacked in their own homes, constant 911 calls are not enough

Stock photo

Stock photo

By Ellen N

I am a single mom in desperate straits. Last month I had to take my 18 year-old severely autistic son, I’ll call him K, to the ER due to his violence against himself and me. They almost sent him home like they have in the past, until he had a meltdown. Then it took 10 staff members to restrain him while giving 2 shots of Ativan and getting 2 sets of adult restraints on him to keep him and everyone else safe. It took about an hour and a half for the Ativan to kick in and calm him.

It is no longer safe to have him home—either for him or for me. He stayed in the ER until an emergency respite house could be found that would take him while we await residential placement. He has been in the respite house since mid-month. This is helpful — but I only have three weeks and then he is released back to my care. 

I received a call from his case manager at the Office for Persons with Developmental Disabilities (OPWDD) stating that he had a meeting with a committee to get K into residential placement, and he was listed as a Level 1 priority, which means he is at the top of the list. This seemed helpful, but then he said he does not know how long it will take to find him a spot and he doesn't know how the process works or who actually does it. I still have not heard anything about a potential residential placement.

When I asked him what am I supposed to do to keep us both safe at home if there is no residential placement, he tells me to do what I did before, which was to call 911 and hope the responders take him to the ER again. Which is basically the same as saying “We will do nothing to help you.”

Last time I had to call 911 three times in two days before anything was done. The first time K was calm when they arrived so nothing was done. The second time the officer watched him hit me but claimed he was not a threat so wouldn't do anything. Finally after the third call an officer agreed there was a threat to K’s and my safety, so he took us to the ER. Luckily this officer saw the damage done to me and my car when he attacked me while we were driving back in March. So he knew what would happen if things weren't done to protect us both.

I had to have X-rays on my back and shoulder from the hits I took every day for the last year or so and do not have the results back yet, but know there is damage. And I fear what will come next.

Meanwhile, K’s doctor left the practice where he is a patient. So while all of this is going on, we had to go through an emergency process to fill his medications.

Last time I visited K he flipped out when he saw me and wanted to come home but couldn’t. He had to be sedated again, and since staff and I don't want him to go through that again we decided it was best for me not to see him while he is there. I call them every morning and night to see how he is doing.

This has been hell for us but I am also terrified of what could happen to me if he has to come home. 

To make matters worse, I have not been able to work for over 10 years due to having to be home with K. I just sold our house and was planning on renting but since I don't have a recent work history, and no real credit because of his SSI being our only income for so long, etc., it is hard finding a place.

I am so frustrated. I never wanted to have to place him somewhere else so it kills me that I now have to for both of our safety. But I also, literally, cannot survive the endless aggression. I have no help from family or friends. Even the people who are supposed to help don't help.

Ellen N is the pseudonym of a mother of a severely autistic young man who lives in New York State.

A Football Great’s Scorching Tale of Severe Autism

“The Warner Boys” is the perfect antidote to neurodiversity nonsense — and offers an unexpected bonus for science

The Warner family.

The Warner family.

By Jill Escher

I remember two years ago hearing about a former pro football player coming “out of the autism closet” and sharing with the world his family’s plight of having two severely affected sons. At the time I didn’t pay much attention, but I suppose it’s never too late to catch up with what turns out to be one of the best autism memoirs I’ve read.

Curt Warner earned his fame back in the 1980s as a star running back for the Seattle Seahawks. Before that he was a two-time All-American at Penn State, known for his crafty, determined rushes. He was gentlemanly but tough. As his wife Ana remarked later, after getting pounded play after play in the NFL he would suffer injuries he didn’t even know about until after the game.

Curt and Ana wrote The Warner Boys together, with the assistance of sports journalist Dave Boling. I loved the book as soon as I saw the opening lines: “Our son Austin devoured books. Not reading them, eating them.” It’s this sort of candor about the highly dysfunctional autism suffered by both Austin and his twin brother Christian that makes the book worthy of an Autism Pulitzer, if there were such a thing.

Forget the “autism is neurodiversity” or “autism is like traveling to Holland instead of Paris” blather. In these pages it’s more like traveling through a mini-hell, dreading what heart-stabbing nightmare lurks around the corner — a dark tale they manage to convey with the biggest of hearts and an overwhelming love for their boys.

It all starts innocently enough. In a chance encounter, Curt meets Ana, a transplant from Brazil who was working multiple jobs trying to build an independent life for herself in the United States. She knew nothing about Curt or his fame, but from the moment she saw him went weak in the knees knowing “this was it.”

When Curt tore up his knee in his second season in the NFL, thanks to the terrible turf in the Kingdome, he underwent a complicated surgery involving removal of a ligament from his hamstring to rebuild his ACL, a pioneering surgery at the time. He underwent five more surgeries after that, on his knees and ankles. More about this topic at the end of this review.

Not long after, he had to retire from football and he started a new life as a businessman. The couple also wanted to pursue their dream of having children. Tragedy struck from the start. First came a beautiful boy named Ryan, stillborn. Then multiple miscarriages. Finally they had Jonathan, who went on to be a typically developing boy with an athletic streak. Nine months later they were pregnant again, with twins.

From the earliest years Austin and Christian failed to reach basic milestones. After the autism diagnosis, and as the boys grew older, their behaviors intensified. They relentlessly kicked holes in walls all over the house. Vicious head-banging landed Christian in the trauma ward. Austin’s lack of fear and elopement led to near-death experiences. The boys screamed and shrieked, and bit their hands and arms so often and severely it seemed they wouldn’t heal.

Every waking moment seemed fraught with mix of dread, exhaustion, puzzlement, heartache and financial drain. To endure the chaos and strain, Curt drew on lessons learned from his football days: “Sometimes you’re just getting beaten and there’s othing you can do about it…. You’ve got to line up and try it again. The next play, boom, you get clobbered again…. That’s pretty much what every day felt like for us for a long time.”

And Ana was beyond exhausted. After the boys were born she suffered post partum depression, then later, PTSD, then panic attacks (“My heart would pound so hard, and I’d have this overwhelming sense that I was going to lose it, just come undone”), then a deep, dark depression permeated with suicidal thoughts. On long drives near their home in Camas, Washington taken to calm the twins, she thought of ending it all, taking the boys with her, crying “so hard I could barely see.”

I appreciated Ana openly sharing the depths of her pain — such inner torments, though usually transient, are almost universal among severe autism parents, but far too seldom talked about.

But it was not the chaos that hurt the most, it was the boys’ inexplicable suffering. When Curt tried to hug and comfort the boys, you could feel his heartbreak leap off the page: “I would look into their eyes, and it’s like they were asking me, Why? Why is this happening to me?”

So many other themes will resonate with autism families. For example, the divide-and-conquer strategy that prevented Ana from seeing many of big brother Jonathan’s sports events, the futility of the costly and complicated therapies, living in a lockdown house with extra locks, alarms, and fences, trying new diets, oddball micro-talents combined with functional incapacity: Austin could provide any detail of every Disney movie from the last decade or more, but he couldn’t tell you how many quarters make a dollar. Indeed Austin’s naive craftiness led to a mega disaster that I will let you discover on your own (though the title of this post offers a hint).

The narrative is also peppered with some non-preachy advice for couples finding themselves overwhelmed and stressed in the “strange new world of ASD.” Despite being a fierce competitor on the field, Curt never complained or “kept score” as couples often do. Following advice of a preacher the couple valued open communication. For Ana, faith and her love for God saved her in her darkest moments. The strongest glue, though, was an enduring mutual respect, a context that made the conflicts endurable.

As the book comes to a close, the Warners have adopted a lively little girl named Isabella, and the boys have become “full-grown adults, but unable to explain to anyone who they are, where they live, or that they suffer from a disorder.” My best guess is that the Warners’ deep concern about the future is what drove them to publicly divulge their intensely personal story. They remark that the autism tsunami means unprecedented waves of seriously disabled youth aging into adulthood in need of lifepan care, financial support, and structured supervision. As America ignores and sugar-coats the rising tide of disabling autism, The Warner Boys blares a wake-up call, seeming to cry, “Enough of the distractions, look at the disaster happening everywhere to our families.” That alone makes the book an important contribution to the literature — one that you should read and recommend to everyone you know who dares to try to normalize autism.

Now, a coda. 

warner book cover.jpg

Why did this happen? Why would two perfectly healthy and intelligent people have not just one but two sons with severe autism and intellectual disability? The Warners write they never received any explanation from any clinician for their son’s disorders.

But I would like to suggest potential clues are right there in Chapter 2. As I said above, after serious injuries Curt underwent six surgeries in the latter part of his football career. Then not long after the succession of operations he and Ana started their family.

I have authored papers in scientific journals suggesting that in some cases general anesthesia (GA), particularly the sort used in surgery with modern inhalation anesthetics, can act as a potent germ cell toxicant, raising the risk for autism in offspring. 

What does that mean? Basically that GA can damage sperm or egg DNA or alter gene expression, with brain development genes being particularly susceptible to GA. It means that the offspring of the damaged germ cells could be at heightened risk for abnormal neurodevelopment, a phenomenon we see in the animal studies. I discuss this hypothesis in detail in a recent paper here, which was also profiled in Psychology Today here.

The fact that this rather obvious question of genetic toxicology is not even being entertained in mainstream autism research is in my view one of the greatest medical and research oversights of our time. I can only hope that stories like the Warners’ can provide a cautionary tale, not just about the dire reality of severe autism, but about a potent genotoxic exposure that may quietly be fueling a public health disaster. 

Jill Escher is the president of the National Council on Severe Autism. She is also an autism research philanthropist (Escher Fund for Autism), a member of the governing council of the Environmental Mutagenesis and Genomics Society, and the chair of BeyondGenes.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.