The Ride Together:
A Brother and Sister’s Memoir of Autism in the Family
By Paul Karasik and Judy Karasik
Washington Square Press, 2003
(Book Review)

by Loree Cook-Daniels

Books that mention Adult Protective Services (APS) and its importance to a family are rare. So, too, are books that combine a written narrative with a comics narrative. The Ride Together does both.

Judy Karasik told AAR that “the point of our story...is to let readers meet and know our brother David,” who has autism. The book sketches out who David is -- at least as viewed by two of his siblings -- and how his family has dealt with having an autistic member.

In some ways, the elder Karasiks maintained a remarkably “normal” life for David’s three younger siblings. Yet the impact of living with a “different” sibling is clear. At one point, David was discharged from a residential facility for being too violent, and returned home. Judy remembers,

My adventure in normal life was ending. I would need to be able to predict with some certainty that the friends I invited over to the house could handle David, that they would be cool enough to act as though he was like everyone else if he was having a good day, that they would be smart and fast enough to get out of the way if he was upset. I would have to know if people liked me before I invited them over to the house, because kids who didn’t could say things about David behind my back after they left, things I didn’t like to imagine but which made me murderously angry when I did. I had to protect him. We all did. We could have only friends who were very, very loyal. Only insiders.

I would have to be nice about the little things, which can be the hardest things to be nice about: not getting the extra piece of pie, but letting it go to him; not minding the noise of the shows [one of David’s favorite activities is to reenact television shows], the shows that happened whenever David wanted them to; not getting a ride to the bus, but walking down there and back.

The book covers nearly 50 years of David’s life, from his birth until shortly after the Karasiks found out that the facility at which David had lived for 14 years had degenerated into a place where physical, emotional, and sexual abuse were rampant.

When the investigators from Adult Protective Services came onto the Brook Farm campus, in the first days of what would be a very long stay, they discovered a locked metal box.

Inside this box they found reports of abuse on clients. These were reports by staff of misconduct by other staff members. These were not included in the clients’ files, where they would have been available in routine reviews by external inspectors.

Each contained a report of behavior that clearly should have been reported to authorities within twenty-four hours, according to the law. Nonetheless, on the front of each report were these words: “Investigation not warranted”

Here is what was in the locked reports:

A staff member twisted a client’s arm and slammed him in the stomach three times, another hit a client for stealing ice tea, another hit a client with a clipboard, chipping a tooth. A staff member put both hands around a client’s neck. A client was punched in the stomach and chest and threatened with a knife. A client was hit with a broom handle. A staff member slapped a client and pulled her hair.

A staff person withheld a hot dog from a resident and had the resident chase him for five minutes before giving him the food. A client received a swollen lip while “playing” with a staff person.

A staff member hit and dragged a client from the dining room, causing the client to lose a tooth; he called the client “a stupid ass.” A staff member pushed a client to the floor, slamming the client’s head on the floor eight to ten times.

In October 1994, six reports went into the metal box. In November, eight reports went into the metal box. In the spring of 1995, there were only a few reports, but they picked up again in the fall. Six in September, four in October, several scattered over December and January, four again in February and March 1996.

The staff had turned in these reports, even though they must have realized that what they reported was not investigated. I imagine they were discouraged, and for that reason I believe that these papers represent a small percentage of what could and should have been reported.

Despite the fact that the book is subtitled, “A ... Memoir of Autism in the Family,” autism is not the only severe disability this family has coped with, nor was David’s injuries at his residential facility their only experience with vulnerable adult abuse.

When David was twenty and all the siblings were living at home, the household shifted to accommodate two more.

When Grandma Irene, Joan’s mother, died from a stroke in 1967, my grandfather, Henry Pascal, and my aunt, who was called Sister, came to live with us. My parents, of one mind on what needed to be done, swiftly renovated the house so that the first floor could accommodate two people who couldn’t manage stairs: adding a bedroom with a bath for Sister and enclosing the study as a bedroom for Grandpa.

Sister, it turns out, was profoundly retarded and had “never walked; she was carried or she was wheeled. She had the ability to make groaning or snarling noises, but Sister never spoke.” Grandpa was also dependent.

Grandpa Henry was ninety-five years old and in a great deal of physical pain. He had busted both hips, falling first on one, then, a year later, on the other. He had shingles, a virus draped over his temples that left the nerve endings tattered and in pain, including the great nerve that encircled one eye. His pulse beat beneath a net of flaky skin. He could barely see. Henry Pascal was broken but he was too attached to life to die.

The family had long had the help of Dorothy White, a woman who had come to work for the Karasiks when David was a baby. Now, just when the children were getting to a point where her help was no longer needed as much, the new additions changed everything.

During the period when Grandpa and Sister lived on Lenox Street, caretaking was the main event in the house, while the rest of us, like performers with lesser business in a three-ring circus, slipped in and around my mother and Dorothy as they occupied themselves with one need or another.

They washed continuous loads of clothes and sheets, they brushed Sister’s hair and talked to her and saw to it that her wheelchair found its way into a sunny spot in the living room, they prepared special meals, they kept an eye out for loose rugs when Grandpa was still using a walker and, later, popped his wheelchair over the bumps of the door frames, they dodged and kept an eye on David when he was home from the day program, as he dashed from one show to another, they managed Grandpa and Sister in and out of the shower stall, they handed out three separate sets of medication -- painkiller for Grandpa’s shingles, milk of magnesia for Sister’s bowel movements, and phenobarbital for David’s seizures.

Meanwhile, they raised the rest of us. Everyone was treated equally; the presiding spirit calmly asserted that this whole scene -- wheelchairs, bedpans, and the constant static of unconnected language -- was just another way people lived.

Two years later, with the rest of the family on vacation, Judy stayed in the house with Grandpa, Sister, Dorothy, and a night nurse. The story she tells is a heart-breaking one of a young teenager watching the nurse willfully neglect her moaning grandfather, and reaching out to Dorothy at her house to return and save them all.

Dorothy, it turned out, saved the family more than once.

After Grandpa’s death, Joan considered whether it would be better to have Sister stay with us or put her in a nursing home. Dorothy, who had clearly been thinking about this for some time, immediately said there would be no nursing homes in Sister’s future; instead, Sister would live with the Whites in their brick rowhouse on Allison Street.

Dorothy and her husband, Eddie, would enclose the sunporch at the back of the first floor and add a bath. Sister would be in the middle of the family action; there were always lots of people coming and going at Dorothy’s house, unlike 9 West Lenox, which was increasingly quiet and empty.

Dorothy and Eddie took care not only of Sister, but of Dorothy’s cousin Flowree, who was completely blind from diabetes. A house fire six years later took both Sister and Flowree’s lives; Eddie sustained severe burns trying to rescue Sister. Like Eddie, Flowree had also turned around on her way out, in her case to save money she had collected for the church. The fire had started with a short in Sister’s television.

This remarkable relationship between two families, like David’s story itself, deserves much fuller treatment. But that’s not the purpose of this book, which, with its very spare renderings of different scenes from half a century, seems designed to construct huge blank spaces into which the reader can imagine her- or himself. Like the Karasiks themselves, it’s a remarkable achievement.