“I want to stay in the car!” said my son Danny, who will turn 30 in a few days and has autism, as I pulled over while sirens sounded in Jerusalem. His face was white and he was terrified.
I had picked him up for the second time during the war at the therapeutic village where he lives in central Israel, and everything had gone fine until we were about 10 minutes away from home.
When the warning alert sounded, I kept driving, knowing there was a remote possibility that we could make it home in time, where there is a bomb shelter and where Danny feels comfortable with our neighbors.
But we had just turned onto Bethlehem Road when the siren sounded, meaning there would be a missile attack within 90 seconds. I stopped at the nearest parking space, which happened to be outside a small grocery we used to shop at often a few years ago. I saw people streaming in and remembered it has a cellar.
Danny, who had apologized when the alert sounded, thinking – as he always does – that if I am stressed, he must be to blame, kept begging to stay in the car, a place where he feels comfortable and safe, not knowing or understanding that, far from providing protection in a missile attack, cars can explode and shatter.
I wrote in this newspaper a couple of weeks ago how Danny endured the many missile attacks from Iran on his first weekend home during the war, but I am telling another chapter in our story because this is Autism Awareness Month, and Autism Awareness Day was marked on April 2.
The key point here is that he does not have the judgment to know that he must get out of the car when an attack is imminent. It is the same when we are at home: If I had not demanded that he get out of bed at night and go to the shelter during the four – or was it five? – missile attacks on one of the nights during our previous weekend at home, he would have stayed in bed.
Even though he is bilingual and can read and write in both languages, he cannot cross the street alone, because he is too impulsive to take notice of what traffic is around. And he certainly would never take shelter on his own during a missile attack.
How the 'neurodiversity movement' trivializes millions of lives
OF COURSE, to anyone with compassion and a modicum of common sense, it is clear that my son and those like him need support and protection.
But for years now, the whole concept of the autism spectrum has become muddled by the so-called neurodiversity movement, whose adherents support a social-justice agenda positing that “neurodivergence” should be celebrated and is just a different way of being. They dismiss and trivialize the needs of the millions of people around the world like Danny who require 24/7 care.
Autism is a neurological condition with no clear test – it does not show up even in brain scans.
People with what is referred to as severe or profound autism are often nonverbal, although there is no precise agreement on what even this term means, but it is generally understood to be people who simply cannot speak, or can say only isolated words, and often cannot even use the words “yes” and “no” meaningfully.
Some of these people have violent outbursts, hurting themselves and others. There are actually people with profound autism who need to wear helmets because otherwise they will bang their heads against the wall until they are injured or dead.
I have seen such people at a center in Jerusalem where Danny used to go for treatment, and it is truly heartbreaking what these people and their families endure.
Many others on this end of the spectrum can wander away from their homes or schools and are frequently found dead afterward, usually from being hit by cars or drowning.
I have a Google alert for autism, and it usually turns up two kinds of articles: debates over the correctness of various terms and attitudes to do with autism among the neurodiversity community, and urgent calls to find people with profound autism who have disappeared or announcements of the deaths of those who have gotten lost and died. Danny, despite his skills and verbal ability, is closer to this end of the spectrum.
But there are also those on the spectrum who can live independently with support and are generally very verbal but have a hard time recognizing social cues and functioning on many levels.
People like this used to be classified as having Asperger’s syndrome, but the diagnostic criteria were changed in 2013, and the Asperger’s diagnosis was removed.
There is no question that people on this end of the spectrum face real challenges. Often, because they can be mainstreamed with some support, they are vulnerable to being victimized by bullies and predators in a way that my son, who is never left on his own, is protected from.
But in recent years, a new issue has emerged, and that is that thousands of people around the world have been diagnosing themselves with autism in the name of neurodiversity and embracing it. Every week, a new celebrity jumps on this bandwagon. These are the people who talk about celebrating their autism as a “superpower.”
Any article I have ever written in which I express concern for my son’s well-being or discuss how to help him overcome his deficits draws comments online accusing me of the dreaded A-word, “ableism” – meaning, that I see him as being inferior – instead of recognizing that I hope to help him live safely. To suggest that anyone on the spectrum needs care and help is a cardinal sin among this crowd.
Parents have posted my articles on Facebook groups devoted to autism, and the comments have had to be shut down because of vicious personal attacks against me by the self-diagnosed. I have become persona non grata on a number of websites, simply because I won’t celebrate the fact that my son would stay in a car or in bed during a missile attack.
I have also received comments from people who claim to have autism and to be activists who say that it is wrong that Danny lives in a community with others who have autism. These people who have never met Danny would claim to speak for him, saying he should live alone “in the community,” not knowing or caring that he does not like to be alone for even a minute.
The latest fashionable word in neurodiversity discussions is “masking,” which the self-diagnosed use to explain how they have grown to adulthood without being diagnosed, and which means that when they feel unease, they pull themselves together and pretend to be all right. I don’t deny their distress, but this ability to power through when they are feeling upset simply makes them human; it does not mean that they are autistic.
But finally, after decades of this increasingly nonsensical debate on the subject, the pendulum is finally swinging back.
In early March, Dame Uta Frith, a psychologist who is an emeritus professor of cognitive development at the Institute of Cognitive Neuroscience at University College London, gave an interview to The Times in which she stated, “I think the spectrum has come to its collapse. There is no longer a common denominator for all the individuals who are diagnosed as having ASD [autism spectrum disorder].... The spectrum has become so accommodating that I fear that it has now been stretched so far that it has become meaningless and is no longer useful as a medical diagnosis.”
While noting that the rate of diagnosis for those with profound autism has remained stable, she pointed to a dramatic rise in the diagnosis of those on the other end of the spectrum, particularly the self-diagnosed, saying, “These individuals have no intellectual impairment and are verbally fluent, but they typically feel highly anxious in social situations and are hypersensitive.”
Tellingly, she also noted that autism has “become glamorized, and a diagnosis has become somewhat desirable.... We don’t see schizophrenia being glamorized in the same way.”
Her concern, and the concern of millions of families of those more profoundly affected, is that “the frightening rate of increase in later-diagnosed groups overshadows the needs of those with intellectual disabilities, who require much more intensive support.”
What she recommends is nothing short of a return to sanity: Doing away with the broad concept of the spectrum altogether and replacing it “with subcategories which separate those with childhood [profound] autism of the strict clinical kind, those with Asperger’s, and those with hypersensitivity.”
This would be a major first step to protecting people with profound autism and those with what was once called Asperger’s.
When it comes time to cut budgets, perhaps this reclassification could help prevent funding for care for those with profound autism from being gutted.
Israel’s just-approved budget has earmarked billions of shekels in increases to ultra-Orthodox institutions and cuts to other sectors, including the Social Welfare Ministry, which funds most services for adults with autism and many for children.
My fear is that if lawmakers are led to believe that autism is simply another word for getting nervous before a party, then they will see no need to keep funding services for autistic people. And if the public believes autism is something to be celebrated, wouldn’t people assume that no one really needs to pay to protect and nurture those who have it?
SO, FRITH’S words and the attention they have received cheer me. And as the war enters its second month, so does the work by the artists of the village where Danny lives, Kfar Shimon. During the past two years, two galleries in Tel Aviv, Artspace and a gallery in a library at Tel Aviv University, have mounted shows of their artwork, including my son’s.
I can’t help but marvel at the complexity of the images they create. Their drawings feature bright colors and detailed imagery.
One young woman fills her drawings with figures in native clothing, since Nvo Sevori, their very gifted teacher, often suggests they look at pictures from National Geographic for inspiration. Another drew a picture that features a panda cradling a baby, surrounded by Native Americans and soldiers. Still others favor unclassifiable creatures, colorful portraits, and geometric patterns.
Danny’s favorite object to draw is ceiling fans, the movement of which fills him with a near-hypnotic sense of well-being.
What I see in all their pictures is that their minds work in extraordinary ways. They cannot explain why they draw what they do. All Danny can say is, “I like fans. They go fast.” But that doesn’t make any of their drawings and paintings any less magical.
Sevori encourages them to collaborate on large drawings, and that also showcases an interesting side to these artists: They work together happily, embracing each other’s different styles.
One picture I saw when the drawing workshop was open for parents before the annual Hanukkah party, by Danny and two other artists, Noga Eitan and Nir Aloni, has stayed on my mind.
At the top is a row of fans, obviously part of Danny’s contribution, but they have been colored and decorated in ways that seem to have come from the other two. At the bottom are faces, some of which are covered with brightly colored lines in a way that Danny favors, others with spikier black lines. Another fan partly covers one face.
The point is not who did what, but the effect of the entire drawing, which is electrifying. The picture expresses so much, and it is fascinating to me to try to figure out what is going on in it.
There is so much we don’t understand about autism, and so much left to learn. Clearly, Danny and the other residents are continuing to learn and develop, as the complexity of their drawings demonstrates. Perhaps through their drawings they will eventually be able to express their responses to this war in a way that they cannot with words.
THAT DAY of the missile attack on our way home, I managed to coax Danny out of the car and down the steep flight of stairs into the grocery cellar. Hearing the booms outside – meaning, that the interceptions were nearby – Danny crouched on the floor, a posture of comfort for him.
After a moment, among sacks of potatoes and carrots, he looked around and perked up a little, asking the others standing near us their names. “How’s life?” he asked them.
Then he remembered a cashier he used to talk to several years ago when we would shop there, and asked how he was, reminding the grocery’s owner that the cashier had left to go to America.
“I know,” said the owner. “He’s my grandson. He’s fine.”
I was happy that Danny found a way to divert himself, and once the all-clear sounded, we bought a few things, then headed home to have lunch and watch a movie – until the next siren sounded.