Tag: autism

Perceptions of Autism

Posted on by Marie Snyder

by Marie Snyder

There are a few ideas I’ve seen floating around on social media about people with Autism Spectrum Disorder (ASD) having no empathy, no Theory of Mind, and being in need of fixing instead of accommodating. I just ignored them. But then I heard similar statements in a university class with controversial Autism Speaks and Hopebridge videos on the curriculum. I relayed my concerns about promoting only these organizations without explanation of current concerns and without providing other perspectives like from the National Autistic Society or Autistic Self Advocacy Network. This is a bit of a take-down on what appears to be an accepted curriculum around autism.

What is ASD? C.L. Lynch at NeuroClastic explains the spectrum really well using this illustration. You need to be affected in several of these areas regularly to be on the spectrum, and every person’s different. It’s complex. I went so far as to craft an assessment, the AQ-27, not remotely peer reviewed but rooted in the DSM-5, after being absolutely floored by the offensiveness or inaccuracy of the official assessments we had to learn in class. 

The Controversy:

Some advocates are “furious over the tone of the [Autism Speaks] video. ‘We don’t want to be portrayed as burdens or objects of fear and pity.” Hopebridge suffered scandals when an employee was fired for reporting an abusive incident with accounts of “undertrained staff and high turnover, a lack of transparency and accountability, and practices that prioritize profit over the needs and safety of young people with autism.” Some implications that people with ASD require lifelong care have been questioned since original stats were based on studies of children in psychiatric wards: “This potential bias means that we still know relatively little about the achievements of individuals in whom the presentation of early symptoms is more subtle.”  Read more »

War and Coincidence: My new-old friend in Ukraine

Posted on by Barbara Fischkin

by Barbara Fischkin

Oksana Fuk of Ukraine. Fuk Family photo

At dawn on February 24, 2022, Russian President Vladimir Putin announced a “special military operation,” in Ukraine—a euphemism for war, if ever there was one. Since that morning, the fortitude of the Ukrainian people has resounded, even as the Middle East vies for our attention. For me, evidence of this grit—as fertile as Ukraine’s soil—arrives weekly, if not daily, in messages from a young woman in a western city. She writes from Ternopil, a relatively safe place. But from her I have heard that no place in Ukraine is truly safe.

 I have also heard that its people are determined to stay, survive and rebuild.

My contact is not a war correspondent. She is an English language instructor, a teacher, a college administrator and the mother of two small children. In other words: A regular citizen. Her name is Oksana Fuk and we have been corresponding since hours after that terrifying dawn, almost two years ago, when Russia invaded her country.

We may have met in person years ago, when she was an internationally-recruited counselor at a camp for developmentally disabled children and adults in the upstate New York Catskill Mountains. What we are sure about is that she knows our elder son, Daniel Mulvaney, who has non-speaking autism and attended this camp for many summers.

On February 24, 2022, as I was searching for more news about the invasion—my mother was born in Ukraine—Oksana’s name popped up on my Facebook feed. I saw that she had worked at Dan’s camp.

When we first connected it was 4 p.m. on Long Island where I live. By then the invasion that morning had been front page news worldwide. It was 11 p.m. in Ternopil. Read more »

On War And Autism

Posted on by Barbara Fischkin

by Barbara Fischkin

Photo: Mahmoud Ajjour, The Palestine Chronicle
Children in Gaza who have autism enjoyed a day at the beach in July. Photo: Mahmoud Ajjour, The Palestine Chronicle

Our elder, adult son, Dan Mulvaney, has non-speaking autism. For the most part, Dan has a good life. He lives near us—his mother and father—in a lovely group home on Long Island in suburban New York and often surfs the Atlantic Ocean off Long Beach. During quiet moments when Dan is out at sea, waiting with his surf instructor for a great wave to bring him to shore, I watch from the beach.

Since October 7, I also worry about his compatriots in autism—younger and older—in Israel and in Gaza.

Dan may not speak but he does have his own way of communicating. He has given me permission to write about him here and to relate that he is well informed about world events. He is a devoted viewer of CNN, in particular.

Dan also knows that surfers call the big waves “bombs.” Once in a while a word or two springs from his mouth, sometimes a sentence. Recently, bobbing on his board at the “break” where the waves rise from the ocean in their final push to the shore, he told his instructor they should: “Wait for a bomb.”

There are no real bombs in Long Beach, New York. Before Dan was born I lived and worked in Belfast. I know about bombs. Read more »

Surfing the Ocean in My Sixties

Posted on by Barbara Fischkin

by Barbara Fischkin

(l to r) Jennifer and Barbara Get Ready to Surf 
Photo by Bob Arkow

Deep Water Background

For an opus on surfing, I recommend Barbarian Days: A Surfing Life by William Finnegan. I am humbled each time I pick up this book. Four summers ago, at 64, I decided to try to surf. People who do not surf, and even some who do, are impressed when I mention this, as if any day now I will be gliding upright over sky-high waves and onto the shore. The truth: For me this is a very minor undertaking and would not even qualify as a hobby. In other words: It is something to sneeze at. I have yet to stand up on a surfboard.

I can get on two knees, briefly and occasionally crouch on one foot while supported by the other knee. Then splash, I fall backwards into the water. Backwards is the correct way to fall. You can see the board before it bangs you in the head. With any luck you can then grab its rim or use the leash—presumably still attached around your ankle—to pull the board towards you and safely away from other surfers. I congratulate myself for, at the least, being able to fall off a surfboard well.

Finnegan writes that if you want to be an accomplished surfer, you must start by the time you are fourteen, at the latest. The exact quote: “People who tried to start at an advanced age, meaning over fourteen, had, in my experience, almost no chance of becoming proficient, and usually suffered pain and sorrow before they quit. It was possible to have fun, though, under supervision, in the right conditions…”

I agree, with some caveats. Read more »