April 2 is World Autism Awareness Day, which I tend to remember because I have a 28-year-old son on the autism spectrum, and this year, I’m thinking about a particular kind of autism that I’d like people to be aware of: profound autism, also called severe autism.
These are not people who blog about celebrating their autism and use phrases like “neurodiversity” – these are people like my son Danny, who can’t cross the street alone, and another young man named Yotam.
Yotam Rabinovich, 29, the son of psychiatrist Ilan Rabinovich, won’t be doing anything special for World Autism Awareness Day, because he is anesthetized and ventilated in Beilinson Hospital. About three weeks ago, Yotam, who has profound autism, banged his head against the wall and injured himself so badly that he has severe injuries to his spine and central nervous system. His caregivers were watching a movie and ignored him as he hit his head against the wall repeatedly.
His father wrote in a statement: “Our path is not easy,” and said that Yotam loves to walk and to jump. “My heart was broken that before the surgery, during hospitalization, we took him down in a wheelchair to the hospital garden. There was a pole there and he really likes to jump on poles, so he tried to lift his leg, but it wouldn’t move.”
Rabinovich, who also has a daughter with autism, said that Yotam will be awakened from the anesthesia this week to see how much the surgery has helped him. His family hopes that he will “walk again, even if only partially with a limp… As soon as he walks again, we will be the happiest and luckiest family (for a while) in Israel.”
This is a deeply upsetting story, one that will haunt every parent of people with profound autism. However, it does not surprise any of us in the slightest, and that is one of the aspects of it that is the most horrifying. Many of our adult children on the spectrum continue to have meltdowns, during which they can injure themselves and others, and we realize, as the saying goes, “There but for the grace of God, go I,” or rather, there goes my child.
PEOPLE LIKE Yotam are not a tiny minority of those on the spectrum but represent at least a quarter of those diagnosed with autism. They can’t speak or have very limited speech, and they need help with all daily activities. Some have what are called “self-injurious behaviors,” like Yotam developed, and no one understands why.
Autism is a lifelong neurological condition, and while there are therapies and medications that enable some people to function better, the vast majority are not dramatically helped by any existing therapy. You may read about this or that “miracle treatment” from time to time, but let me caution you: When the word “miracle” is used, it means that another word, “data,” does not apply.
According to the Centers for Disease Control in the US, autism is diagnosed in America in one out of every 36 children born. Over 70,000 Israelis are classified as being on the autism spectrum and more than 80% of these people are under 17, according to an article in Ynet. When Danny was first diagnosed in 1999, the US rate of diagnosis was about one in 500, so something is going on.
Of the many theories as to why this increase has taken place, the one that has been refuted most clearly is that vaccines cause autism, although that is what Robert F. Kennedy Jr., the recently appointed US Secretary of Health and Human Services wants to continue studying.
This theory was propagated by Andrew Wakefield, a former physician who has been stripped of his medical license, and it was based on a 1998 study of only 12 children published in the Lancet, which has since retracted the article. To throw more money at research into vaccines and autism would be like scientists researching earthquakes were to investigate whether the earth is flat.
People on the autism spectrum often wander away from caregivers and the results can be devastating. According to a 2017 study by the Columbia University Mailman School of Public Health, they die at half the age of other people. “The average age at death for individuals with autism was 36 years younger than for the general population, 36 years of age compared with 72,” it said. In 2024, there was an especially high rate of drowning deaths in the US for children with autism, 69 altogether.
Given all this, people with profound autism and their families have to find ways to cope. No parent can care for someone with this kind of autism alone and, as the tragic story of Yotam shows, no solution is perfect. But like all parents, we do the best we can.
MY HEART goes out to the Rabinovich family, and I am acutely aware of how lucky my son has been. While Danny is classified as being low functioning because he cannot live independently, he is able to live in a therapeutic village, where he is learning carpentry and drawing. He is outgoing and friendly, and people love to be around him.
Being his mother is one of the great joys of my life. And it’s especially lucky that as he has gotten into his 20s, he has become calmer and expresses himself more clearly and easily, and this has enhanced our lives.
I’m writing about Yotam and my son for World Autism Awareness Day (and all of April is Autism Awareness Month) because in order to be aware of something, you need to know the facts.
You may often read or hear about the kind of autism where people self-diagnose and talk about how great autism is, but what they are describing is so different from what people like Yotam and Danny experience that it really should not be talked about using the same term. A recent British documentary called Are You Autistic? highlighted the skyrocketing phenomenon in the UK (and around the world) of people with vague symptoms such as social anxiety who seek and receive an autism diagnosis.
Once the diagnosis was made, several of these people said they felt a sense of relief. A young woman described as a content creator and illustrator recalled, “I actually celebrated my diagnosis, I got a cake, and I celebrated it like it was a birthday.”
Claire Taylor, the doctor narrating the documentary, stated that when she was in medical school, her textbook described autism as a “‘severely disabling condition, with huge deficits,’ which is sometimes the case, but often not.”
But often, however, it is. This frivolity, and the embrace of it by the public and even some doctors, such as the one quoted here, excludes people like Yotam and my son, and their very real needs, from the discussion. Who wants to hear about someone in a medically induced coma due to self-inflicted injuries when they can watch a beautiful young content creator talk about buying herself a cake?
As I WROTE in my review of this documentary, “For me and the millions of families around the world who have a loved one with what is generally called profound autism, watching a documentary like this is like asking a homeless person to listen to someone who lives in a Manhattan penthouse complaining about not having a summer home.”
Unfortunately, something like the mentality behind Are You Autistic? is at work in the new Keshet 12 show, Special Interview, where what are described as a group of amateur journalists on the autism spectrum interview celebrities such as the popular musician Shlomo Artzi. While the interviewers on the spectrum are appealing, I feel that the tone of Special Interview is patronizing in a way that would not be tolerated with any other group.
In the latest episode, singer/composer Keren Peles tells her interviewers that she is also on the spectrum, which smacks of the most trivializing excesses of the self-diagnosis trend. If a successful musician like Peles – who is able to perform in public, raise children, and appear as a judge on Next Star for Eurovision – is on the spectrum, what does it even mean to be on the spectrum?
Separate terms
Again, I feel this points to the need for there to be totally separate terms for people like my son and Yotam, on the one hand, and celebrities and other extremely accomplished people who have said they are on the spectrum, such as Peles, Oscar-winning actor Sir Anthony Hopkins, and actress Daryl Hannah, on the other.
While I admit that I am likely overreacting to Special Interview and I understand that people enjoy it, when I think of what Yotam and his family are going through and what so many people on the autism spectrum experience, it terrifies me that people may get the impression that the show’s participants are representative of all people on the spectrum.
Because when budgets get cut – and they always do – many will think it’s strange that families of those on the spectrum are crying out that their children need round-the-clock care just to stay safe and healthy. You can’t blame people for wondering about that if they think that everyone with autism is as poised and telegenic as those who appear on Special Interview.
Which is why it’s especially urgent to make people aware of the reality of all kinds of autism – on a spectrum that ranges from very mild to very severe – so they can understand that it isn’t only about being awkward and cute or having social anxiety, but about a condition that can be dangerous and even life threatening to both those who have it and to those around them.