Death by Severe Autism

In the wake of senseless tragedy, a psychiatrist reflects on severe autism’s painful realities.  

Photos, flowers and tributes in front of the scorched home of autism advocate Feda Almaliti and her son Muhammed.

Photos, flowers and tributes in front of the scorched home of autism advocate Feda Almaliti and her son Muhammed.

By Lee E. Wachtel, MD

With the presidential election only two weeks away, our country stands at a tremendous crossroads during an era of unprecedented health and social challenge. Our lives literally seem at stake. As Republicans and Democrats spar on hotly contested issues ranging from Covid-19 to racial and social equity, climate change and the Supreme Court, disability activists are also jockeying for power and planning their next steps in whatever administration the American people elect. 

I had been quite excited to participate in some of these political advocacy initiatives, until I was upbraided and accused of “ableism” and hurting others’ feelings when I asked what plans might include those with severe autism and intellectual disability. I was informed that “severe” was an unacceptable term, and as discussion of this topic was deeply upsetting to some individuals, I would be dismissed from the committee if I mentioned it again. 

Let's be clear. There is obviously, without any doubt, such a thing as severe autism. The tragic death of autism advocate Feda Almaliti and her autistic 15-year-old son Muhammed (often called “Mu” or “Hammoudeh”) in a house fire in the early hours of September 26 underscores this reality, and also just how critical it is to never back down. We must never allow the plight of children and families dealing with severe autism to be suppressed by advocates who actively seek to downplay the serious mental challenges that ended up killing both Mu and his mother.

Feda, her sister Maysoon and Maysoon's daughter safely exited the burning home, but Feda ran back inside and upstairs to save Mu. Maysoon described what happened next:

“I ran back to the front door to scream for Feda again- as if that would help her come down faster. I can hear the popping of glass and the faint noises of Hammoudeh crying, “No, No, No" in response to Feda pleading with him. ‘HAMMOUDEH COME ON WE HAVE TO GO, NOW, WE HAVE TO GET OUT NOW!’

“The crying and screaming start to fade, probably not lasting more than thirty seconds. Then it stops and all I can hear is myself screaming for Feda and the words ‘my family.’ The realization of how useless and helpless I became made me sick and I wondered if my heart would give out any second.”

In other words, Feda ran back into the burning two-story structure to coax her 6’2”, 280-pound autistic son out of his room and down the stairs. But he would not budge, and Feda stayed. When the fire officials found the bodies, Feda was embracing Mu.

After a colleague and autism parent commented that “Autism killed Feda and Mu,” I had the chilling recognition that these two incredible people died a horrific death precisely because a severely autistic and intellectually disabled kid was unable to transition from point A to point B.

I’ve worked with autistic youth for nearly two decades and have seen countless behavioral protocols developed with intricate layers of reinforcement to gain compliance with necessary daily transitions. Yet while I’ve had kids plop down in the road or tantrum naked in busy airport hallways, I’ve never had any autistic child suffocate and burn for failure to move. 

Typical teens in this crisis would have immediately run down the stairs. Indeed, most people with autism would have done so as well. The autism and disability advocates who attend college and graduate school, tweet their condemnations of autism parents, and campaign for policy reform and who are largely capable of high levels of independent stewardship, would have not hesitated. And those with physical handicap without severe mental and intellectual disability would have grasped the urgency of the situation and likely followed a planned and practiced exit strategy. 

Feda Almaliti was an autism trailblazer beyond compare, and her autistic son Mu was cherished for his infectious joy. But by any reasonable measure, his autism was completely unlike that of the autism self-advocates. It was severe – Feda herself described him as “Autistic as F&@#” — and was compounded by severe intellectual disability. Most importantly, in a dire situation his severe impairments rendered him incapable of taking a simple action to save his own life. If Mu had mild autism, and lesser intellectual disability, I have no doubt he would have heeded his mother's words and fled the fire. Mild and severe. More and fewer IQ points. It all matters. It matters so much that in this case it meant the difference between life and death.

My one hope is that this tragedy may actually serve as a lesson to disability activists who dismiss the reality and plight of the severely disabled while narrow-mindedly pursuing their own agendas. There are so many Mus and Fedas out there facing horrendous hardships. Dismissing their realities — as I was essentially asked to do by current disability leaders — would not only have been a grave violation of the medical ethics to which I adhere, it would carry potentially devastating consequences for national disability programs and policy. 

Whichever administration is in power after the election, they need to hear about severe autism. They need to hear about it loud and clear. Lives are on the line. 

Lee Elizabeth Wachtel, MD, is a pediatric neuropsychiatrist and the Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute in Baltimore, Maryland, an inpatient unit serving youth with neurodevelopmental disabilities and severe behavioral and psychiatric disturbance. She is also an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine. 

A House, a Friend, and Something To Do

“They had no vendors who could actually work with a kid like Wesley…. The law is set up to keep people in their communities. But because appropriate services don’t exist, it does the opposite.”

Dad and Wesley walking through his residential campus, out of state, last winter.

Dad and Wesley walking through his residential campus, out of state, last winter.

By Jennifer Bush

As our community grapples with the loss of NCSA co-founder and Vice President Feda Alamliti, I’ve been trying to get to know her better. While we shared many Facebook friends, and our kids — just a couple years apart — shared spots at a similar end of the spectrum, I never met Feda. But she started work I’d like to continue. So I’ve been watching her videos.

Last night I watched this interview with Feda. And I was struck by what Feda wished for her son as he grew into adulthood: a house, a friend and something to do. So simple, basic, obvious. But I can’t get these words out of my head.

Because it’s what I, too, wish for my child. Not just when he becomes an adult, but now. And it is so hard to come by.

Wesley, my 13 year old, moved into his first group home just shy of his 11th birthday. We had been living day to day for so long, managing aggressive and self-injurious behaviors, extreme insomnia, obsessive eating and more. We were in crisis, but still, it took a year to get a placement. During that time, three homes, designated to care for the most severely affected kids, had rejected him because of his behaviors. 

Wesley’s group home was just 20 minutes away, run by a loving and consistent staff. He was able to continue at his school, and we visited at least once a week. He did well there. And then, suddenly, the group home closed because they could no longer afford to keep it open. We were lucky to get a second placement, but this home had more difficulty keeping Wesley safe and happy. Then they too closed their doors. So in October 2019, Wesley moved back home.

We briefly felt whole again, with all four of us back under one roof. But the challenges were still there. Wesley would go long stretches with very little sleep. We would struggle to contain hours-long meltdowns. The regional center, the agency in CA designated to provide services to people with developmental disabilities, authorized plenty of in-home services, from respite to crisis intervention. But they had no vendors who could actually work with a kid like Wesley. Our case manager told us, literally, not to hold our breaths that we’d find another group home.

So we made the heartbreaking decision to send Wesley to a residential school out of state. CA closed the last of its institutions, called “developmental centers,” a few years ago, for good reason. But this left a void for kids like Wesley, who need more structure than a group home can provide. He needs 24/7 support. He needs consistency across environments and integrated medical and psychological care. He needs people who can keep him busy and engaged, as he gets bored easily. First and foremost, he needs people who can keep him safe. He needs, like Feda said, a house, a friend, and something to do.

Wesley’s first day at school earlier this year, age 13.

Wesley’s first day at school earlier this year, age 13.

And this is where the work comes in. The state of California is failing to provide services to the people who need them most, despite the Lanterman Act, the law that compels it to. The state will not pay for out of state services without massive legal and administrative hoops because the law is set up to keep people in their communities. But because appropriate services don’t exist, it does the opposite. It is shameful that in a state as big and wealthy as ours, there is not one residential school for children and young adults like Wesley, let alone when they age out.

The Lanterman Act says that if services don’t exist they must create them. But all of the consequences of their failure to do so fall squarely on the profoundly disabled and their families. There are no consequences to the regional centers, Department of Development Services, or any other state entity. Other states have their own challenge, with decades-long waiting lists for services. 

Feda Almaliti took on insurance companies to fight for our kids. And she won. Next up: our failing state system. What will you fight for?

Jennifer Bush is a writer and designer living in Silicon Valley. She blogged for several years about her family's experiences with autism diagnosis and early intervention at her blog Anybody Want a Peanut?

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.


#There’sNoOneLikeFeda

NCSA President Jill Escher shares some personal reminiscences about her colleague and friend Feda Almaliti, the NCSA co-founder and Vice President who tragically died with her beloved autistic son Muhammed on September 26 (see our tribute here).

“These vignettes provide just a glimpse into Feda’s colorful personality,” says Escher. “They are not meant to explain the arc of her advocacy work, just some stories to allow her unique humor and spirit to shine on a bit longer.”

#It’sAGift

Scenes from autism conferences Feda helped to organize.

Scenes from autism conferences Feda helped to organize.

As much as Feda adored Mu, she had no illusions about the seriousness of his condition, and would often ridicule the neurodiversity celebration of autism with her ironic hashtag #ItsAGift. 

After our friend’s autistic son bashed his head into a bloody pulp Feda would text #ItsAGift. When Mu would leave a bruise on her leg the size of a grapefruit, she'd roll her eyes and say #ItsAGift. When my son shredded my car’s interior, I knew what hashtag was coming.

But perhaps autism WAS a gift to Feda in a certain respect. It was a boundary-breaker that pushed her into a limitless world of people and purpose. Married at 17, with a first son at 18, and without even a high school diploma, Feda perhaps had a fairly constrained life, but one with brilliance and creative energy brimming inside. Autism was like her Big Bang, and she was grateful for it. She once quipped, “Before autism, the highlight of my week was reading the circular from Macy’s.”

Perfect Black

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Feda rejected political correctness. With her genuine love for people of all backgrounds (including Jews like me), she knew the glue that held people together was humor, the ability to poke fun — based on a foundation of genuine respect, and not some eggshell-walking fear of offending.

Potty-mouthed Feda was an equal opportunity offender. One night she took me and our dear friend Mawuko (whom she had nicknamed "Perfect Black") out to see a Black standup comic who delivered 45 minutes of nonstop sexually and racially offensive drivel. Well I thought it was drivel but Feda laughed hysterically the entire time.

Her cross-cultural affections, though, were a serious matter. Less than a week before she died she told us about a handsome, successful Muslim man she was online dating. But then, she said, on Facebook she posted a big "Shana Tova!" meme for Jewish New Year. The guy saw it and reprimanded Feda, saying he could never lay his hands on a woman who befriended Jews. Disgusted, she dropped him like a hot potato, or knish.

She and I used to joke that together, having experienced the common bonds of humanity through our lives with severe autism, we could create peace in the Middle East.

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Even in a hijab or headscarf, Feda could rock an Ugly Christmas Sweater. She played Santa Claus at a special autism family holiday concert at Stanford. Her bestie “soul sister” Alicia was a devout Catholic.

She considered most supposed differences merely superficial, and made fun of absolutely everyone, even herself. After I asked that attendees at a gathering called “Autism On Tap” wear nametags, Feda showed up with hers saying, “TOKEN MUSLIM.”

Her perfect world would have been a blend of aromatic Palestinian cuisine (at which she was a master), Curb Your Enthusiasm and RuPaul’s Drag Race. She lovingly called an adorable and flamboyant young man who worked with her son Mu “My Gay.” I think she wanted her world spiced with every color of the human rainbow.

Feda was just completely authentic, completely curious, and had little patience for social niceties. One day we went out for a lunch with an elderly, genteel friend in her 80s. After our friend showed us pictures of her boyfriend, Feda blurted, "You have to tell me, DO YOU GUYS HAVE SEX?”

Ah how you will be missed, #Towelhead.

The Supreme Leader

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Being Autism Society San Francisco Bay Area President to Feda's VP meant enduring years of mockery, including being called "THE SUPREME LEADER KIM JONG JILL.” (Okay, I suppose I could be a little bossy at times….)

Feda’s rendering of “Supreme Leader Kim Jong Jill.”

Feda’s rendering of “Supreme Leader Kim Jong Jill.”

One time she invited people to an SFASA pre-conference dinner as such:

"Comrades, You are hear-by ordered BEFORE November 7, 2018 to report your attendance status to the Ministry of Unification. Those who fail to do so by that date shall be summarily executed for defying an order from our Eternal General. 
—Feda Almaliti, Unworthy Servant of the Leader of Our Party Long Live Kim Jong Jill. 

Warning: The placement of this official email in any “Trash,” “Junk,” or “Spam” folder is punishable by the removal of a thumb.”

Oh What a Feeling

From Feda’s Facebook feed.

From Feda’s Facebook feed.

Three years ago Feda and I flew to San Diego for the Autism Law Summit, an event that was to close with a talent show. Happy to skip out on some of the sessions I trudged to a nearby Goodwill to find a baggy sweatshirt she would slash into a costume for a Flashdance "What a Feeling" routine. 

Besides the attire, there were two props, a chair (of course) and a big cup of water, that I, hidden just offstage, was to splash on her face at the very moment she struck her final pose.

Unfortunately I was laughing so uncontrollably during her routine (as was the entire audience) I completely forgot to throw the water, so there she was legs astride the chair, her back arched, yelling "water!"

As we got off the stage she rolled her eyes in disbelief, saying, "YOU HAD JUST ONE JOB!" 

“Gel or Acrylic?”

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Manicures were not my thing but Feda knew that autism moms needed a break whether they admitted it or not. So when Feda said “Bitch, we’re getting our nails done!” you went and you loved every second. 

Science Freak. Not.

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Feda had no great love for science but was humorously supportive of my autism research work, which she nicknamed the #FuckedEggs Hypothesis of Autism (actually, mostly accurate).

You have to hand it to her. To me it's the "Germline Toxicant Exposure and Dysregulated Transcription of Brain Development Genes" hypothesis and hers was just plain old, direct #FuckedEggs. Hers was better, an A+ to my B-.

She gifted me many trinkets along this theme. A DNA scarf, sperm earrings, sperm necklace, and a #SexCells pendant among them. She said #SexCells, which was of course a play on the words “Sex Sells,” would be the name of my book about #FuckedEggs and sperm. She gave me permission to use her and Mu’s likeness and story in many scientific presentations. 

I am #ForeverGrateful.

Bringing the Mountain to Muhammed

Mu and Feda at a fundraiser earlier this year.

Mu and Feda at a fundraiser earlier this year.

Feda was just an awesome mom. She worked tirelessly for Mu and gave him his best life. But at several junctures I felt it was simply not safe for Mu to live with her; he was huge, strong and willful, and too often damaged the home or (inadvertently) hurt her. When I suggested she have him placed in professional care, she resisted. Instead she would “move the mountain to Muhammed” so to speak, and after much advocating boosted the array of services for him at home. She succeeded to an extent, but was left alone at night. And that was not enough to save him, or her.

Feda made this video earlier this year about Mu’s “Dope Life.” Enjoy.

Get to know Feda: Here she is being interviewed by her friend and colleague Sarah Trautman. You can watch it here.

Get to know Feda: Here she is being interviewed by her friend and colleague Sarah Trautman. You can watch it here.

Feda wanted to make the autism world a happier place, and she succeeded with her own son, her local community (too many SFASA activities to count), her state (helping pass insurance reform), and the country (as a national advocate for severe autism). She had so very much to offer, and will be greatly missed.

Jill Escher is the President of the National Council on Severe Autism and Immediate Past President of Autism Society San Francisco Bay Area. She is also an autism research philanthropist, through the Escher Fund for Autism.

Ways to honor and remember Feda and Muhammed here

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