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.
