If only people were actually aware about Autism - opinion

April is Autism Awareness Month, and while awareness has progressed in the last decade, it's still not where it should be.

 DANNY ENJOYS watching the view out the window during a train ride. (photo credit: HANNAH BROWN)
DANNY ENJOYS watching the view out the window during a train ride.
(photo credit: HANNAH BROWN)

It’s my son Danny’s 26th birthday today and of course, we are celebrating, but he has autism, so our celebration looks a little different from those of most people his age. He is not interested in picking out a used car I can help him buy or getting something for an apartment he shares with roommates, because an independent life is not on the horizon for him. Instead, we decided to celebrate by taking the train to Haifa and riding the Carmelit subway, a rare treat that he truly enjoys.

April is Autism Awareness Month and it has long seemed ironic that his birthday falls during this time. In the 23 years since he was first diagnosed with autism, awareness of the condition has certainly increased. But another trend has also caught on: Looking at autism based only on the highest functioning individuals who are affected by it.

I fear that Danny and the millions around the world like him – who are not going to become two-time Oscar winners like Anthony Hopkins, who identifies as autistic, or quirky, brilliant doctors, and who lack the skills to be “self-advocates,” blogging their critiques of the latest television series or article about autism – will be marginalized even further than they already are.

In spite of Danny’s skills – he can read, he’s bilingual and he is so aware of his surroundings that he is like a human GPS – and his very warm and affectionate personality, he needs 24/7 care and, absent a miracle, will for the rest of his life. He cannot be left alone at home at all, because if there were an emergency, he wouldn’t be able to call the police or the fire department.

He cannot go out alone either, because he is too impulsive to cross the street by himself and if he were alone in public, he would be easy prey for anyone who might want to abuse him. These are facts about his life that my family has dealt with for decades and we have always made sure he was never exposed to the world’s dangers.

Demonstration in Tel Aviv to increase budget for people with autism over 21 years of age. (credit: HANNAH BROWN)Demonstration in Tel Aviv to increase budget for people with autism over 21 years of age. (credit: HANNAH BROWN)

While the old stereotype of autism was either a Rain Man-type genius or a person incapable of mastering any skills, ever, these have given way to a new mindset, that autism is a delightful quirk, something to be celebrated. People on the spectrum who are capable of expressing themselves articulately write reams about how they would like to be treated and what we should know about them. But people like Danny, who can talk about Toy Story 2 or a cat we had years ago, has no interest in such abstract concepts. When he turned 18 and we asked him where he wanted to live, he said only, “I don’t want to talk about it!”

I was saddened by a recent article published in the Journal of the American Medical Association (JAMA), based on 27 published studies, that said that people on the autism spectrum face a greatly increased risk of dying young, due to accidents such as drowning and being hit by cars, as well as from seizures, since a high number of people on the autism spectrum, including my son, have some form of epilepsy. This confirms a study published by the Columbia University School of Public Health in 2017 that found that the average age of death of individuals with autism was 36, compared to 72 for the general population, and that deaths resulting from accidents and injuries among children and young people were the main cause for this shocking statistic. Almost every parent of someone with autism who needs constant supervision has harrowing stories of times when their child slipped away and got lost. So when people talk about celebrating autism, I assume that they are unaware of this tragic reality.

Some advocates hold in disdain and try to block funding for any program in which people with autism participate together and are able to study, work and live in an environment where they receive the supervision, enrichment and instruction they need. Everyone should be fully mainstreamed and integrated into the community, they say. In an ideal world, this would make sense. There would be enough money to give Danny the one-to-one supervision he would need in order to work at a traditional job.

But on planet Earth, parents have to fight for every shekel that is allocated to support programs for people on the spectrum. Parents staged a protest last fall outside the Knesset to demand an increase in the budget amount allocated per autistic adult, so that the activity, job and living programs can attract and retain high-quality staff by paying them more. At the time of the protest, those who hold such highly skilled and indescribably demanding jobs were being paid about three shekels above minimum wage per hour. The government did respond and made a modest increase in funds, something of a win for families of those who need such specialized programs.

Another bright spot for the families of Israelis with autism this year was the release Nir Bergman’s feature film, Here We Are, which tells the story of a father with a 25-year-old son who, like Danny, very much enjoys riding the train from Haifa to Tel Aviv and back. The movie was written by Dana Idisis, a screenwriter who has a brother on the spectrum, and she writes very sympathetically and realistically about what it is like to care for a young adult with autism.

I am also cheered by the prospect that Yair Lapid, currently foreign minister, is set to become prime minister in 2023 because he has a daughter on the spectrum. He and his wife, author Lihi Lapid, have written about their struggles raising their daughter, Yaeli, especially during the early COVID lockdowns, which were a very bleak period for people on the spectrum and their families.

I’ll try to keep these positive developments in mind as we ride the train this week. If you run into us, please don’t be offended if Danny starts chatting with you and asking about what pets you have or what kind of car you drive. That’s his way of getting to know people. And when you are thinking of how to vote the next time around – I hope it’s not too soon – keep Danny and all those like him in mind and please cast your vote for a party with a good record on special-needs issues.