Dedication
For every person who is searching
for their voice, and all those who struggle to be heard.
We dedicate these words to you.
—E.G.
Contents
Cover
Title Page
Dedication
A Note to the Reader
Prologue
Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10
Chapter 11
Chapter 12
Chapter 13
Chapter 14
Chapter 15
Chapter 16
Chapter 17
Chapter 18
Chapter 19
Chapter 20
Epilogue
Poetry by Emily
Acknowledgments
Note from the Authors
About the Authors
Copyright
About the Publisher
A Note to the Reader
Hello readers,
For 25 years I was trapped inside a body without a voice. Through the help of my communication partner, I have learned to type. I’m now able to really express my thoughts and feelings in a way I never thought possible. The years used to pass me by and I was merely an onlooker of my own life. Now I am the one making the decisions about my life and won’t ever again be silent. I’m so very grateful every single day. Please friends, do me a real favor and be open minded when you meet someone on the autism spectrum. I can guarantee that there is more to them than you can see.
Sincerely,
Emily
Prologue
January 2016
“Is this Tom Grodin, father of Emily Grodin?” the woman on the other end of the phone asked my husband. She sounded out of breath and fraught.
Now what? I wondered. Tom and I were settling down for the night, getting ready for bed. That the call was tied to our daughter, Emily, twenty-five, went without saying. We were used to such calls, just not what came next.
“The police are here, seven of them,” she said. “Emily’s caregiver has been hurt and she needs to go to the ER. I’m not sure exactly what happened, but apparently Emily got aggressive and now there’s a lot of commotion. She’s very upset. I need you to come get your daughter. Now.” Her voice echoed across the room. My stomach was immediately in knots. In minutes, Tom was dressed and out the door.
There’d been issues before, meltdowns, times we needed to go talk with her and smooth things over. Now, though: A caregiver going to the hospital? Seven police officers? Nothing like this.
As I waited for Tom and Emily to return to our Encino home, I wandered from room to room, wanting to change things for her, wishing we didn’t find ourselves in this situation, but unable to fix anything. Emily was our only child. A beautiful, amazing, precious young woman. She’s also autistic and pretty much nonverbal. If I asked her a question, she could give me a yes or no answer, but she’d be unable to elaborate, to express verbally her pleasure or displeasure, or to open a line of dialogue with us or anyone else. This limitation made her appear, to those who failed to understand the disability, as if she were locked inside herself and incapable of making decisions or having preferences. She was unable to tell us what it was like being Emily, how the autism shaped her, or the way words, as well as the world, failed her. She couldn’t tell us if she had a stomachache or a toothache or needed help in some way. She appeared to live in an isolated space to which we had repeatedly tried to gain access and failed. She was alone in there.
When her inability to communicate was coupled with frustration, the often dramatic-looking symptoms of autism—compulsive and/or repetitive behaviors, self-injury, disruptive vocalization—emerged. Simply stated, she could have meltdowns. They could happen with anyone and in any locale.
It had been a little easier when she was younger. While her outbursts, even then, were difficult, now that she was a fully grown adult and commanded space, her voice was loud and powerful, her physical presence imposing, and the incidents had grown harder to manage. Emily could act differently than other people, often in ways that could be startling.
When the call came, she was living in an apartment in Westwood with support staff and participating in a transition program at the UCLA Extension school for students with special needs. This was all part of our experiment in independent living for her, a goal encouraged and valorized by so many of our friends raising young adults with special needs. We wanted to give her the skills she’d need to live as independently as possible, preparing her for a life without Tom and me to watch over her, to speak for her, to be the buffer between Emily and the world. Since her very first diagnosis, we worried how Emily was going to manage in this world when we were gone and no longer here to be her intermediaries.
Tom and I had been older parents when Emily arrived. While most parents of young adults at our stage of the game were now looking forward to seeing their children make independent lives for themselves, we were simply hoping to get her on footing stable enough to manage without our constant intervention.
In some ways, that January call shouldn’t have been quite so surprising. Over the preceding year, her meltdowns had become progressively more challenging. Recently, the agency providing her support had demanded we obtain additional behavioral services to try to rein in her conduct, and we had. We acquiesced to their request even though, after twenty-plus years of behavioral intervention, we’d found such therapies mostly ineffective with Emily. Everything we could do had already been done. As her desire for autonomy ran up against her limitations with speech, the overflow of emotions and frustrations had grown more insistent.
To have a child with autism and to be told she’ll never be capable of genuine communication, that her life will always be severely limited, is to know deep and abiding grief. From our experience, a child with autism is like a person locked inside a closet at the top of a collapsed stairway, in a boarded-up house that’s hidden by overgrown vines, down a driveway blocked by deadfall on a street bypassed by the highway. This closet is the entire life of the autistic individual, removed from the world. Yet the worst horror is the thought that within that closet, a single light burns brightly.
We’d seen firsthand and from a very young age the spark and animation in Emily’s eyes and sensed an untold intelligence confined within her. Yet we’d been told by countless experts countless times that our dreams for her were misplaced. She’d never communicate. Her life would be forever limited. After twenty-five years we’d come to accept this reality, while still hoping it could be otherwise. On the one hand, we acknowledged the objective reality of how she presented to the world and accepted and loved her completely. We also nurtured stubborn seeds of hope that, to almost all professionals we interacted with, were irrational. Could our dream actually come to pass, that Emily might finally be able to tell us about her life? If so, she might escape some of the autism constraints that had long held her. We clung firmly to the belief that one day she might be able to free herself from the frustrations that had become so hard for her to bear.
I worried, though, that we’d been premature in thinking she was ready to live away from home. Perhaps we were deluded about what she was capable of. We had no idea how to move forward into better terrain.
What most people who witnessed her episodes didn’t realize was that these behaviors were her form of communication. Without the ability to formulate words, she had no other mode of expression. We knew and understood this dyn
amic, yet by this point, the explosions had become an ineffective and increasingly problematic way to make herself heard. We needed to help her find another strategy.
Seven officers.
The UCLA arrangement had been a beginning, an investigation into figuring out her strengths and weaknesses. The experiment, though, was not quite working out the way we’d hoped. Despite having arranged support 24/7 to assist her in navigating the program, the campus, the community, and the social interactions, to give her the experience of living away from us, we found ourselves contacted regularly when an issue with her behavior arose.
Little things could set her off. A change of expected plans or a roadblock of any form (both literal and figurative) might result in a flare-up with distressed vocalizations, finger flapping, yelling, and other agitated behaviors that displayed her displeasure or anxiety. On more than one occasion, a meltdown in public had drawn the attention of a security guard or Trader Joe’s manager who tried to intervene. While these authority figures may have had the best of intentions, their involvement sometimes escalated things and made the episode worse. In a full-scale incident, Emily might scream as if her life were being threatened. She might hit herself in the head or bite her finger. If she was trying to get someone’s attention, she might get aggressive: grab, pinch, or even rake their skin with her nails. Though you’d think we’d be used to this by now, sometimes these explosions still alarmed Tom and me. When Emily was upset and made her disturbance known, even those of us who knew her kind and gentle spirit could be left reeling. I could imagine how her behavior must have been greeted by those who didn’t know her or who happened to observe her in public.
Like the police, whom I kept picturing in my head gathered around her, confronting her.
I paced the house, then straightened her bedroom. I couldn’t help imagining the red-and-blue police cruiser lights on her street in Westwood. Had their guns been drawn? I imagined the officers crowded around my daughter’s terrified face. She would have been utterly unable to answer their questions or to explain what had happened. Her bewilderment at what unspooled must have been immense. I could protect her from only so many things in this difficult life, but not from everything. I feared that I’d failed her.
Soon, my phone was pinging. Photos of the caregiver’s scratched hand and arm appeared on the screen. The raked skin and bloodied grazes along the woman’s forearm looked familiar. She’d hurt me in similar ways. My head felt like it was in a vise and I was horrified by the harm she’d caused. Regardless of what triggered this reaction in Emily, aggression at this level was clearly unacceptable.
Next, I received texts from the caregiver’s employer, the same woman who’d called to alert us to the incident. “The aide might need plastic surgery,” she wrote. “Are you prepared to make this right?” I felt a threat had been lobbed at me by the very agency hired by the state to ensure my daughter’s safekeeping. They were looking for any excuse to rid their roster of responsibility for Emily. We couldn’t go on like this, no one could, most of all Emily. We needed to do something to address her behavior. But what?
AN HOUR LATER, Tom came home with Emily, who looked okay to me, not overly worked up. Pretty calm, actually. Certainly calmer than I felt.
“What happened?” I asked.
“Let’s just get her to bed and then I’ll fill you in,” he said.
Emily went straight up to her room, unfazed by the evening’s events. We both tucked her in. I smoothed her hair away from her forehead and kissed her goodnight. She turned on her side and I shut off the light.
Back in our room, Tom told me what had happened.
“It started with something about her whiteboard, where the aide writes down Emily’s schedule.” Emily had been upset when the aide wrote something Emily believed was wrong. Emily tried to tell her it was wrong, but the woman kept insisting it was right. Emily got agitated. She tried to get the aide to change the words on the board and that’s when Emily scratched her. The aide got flustered and ran out the door, inadvertently locking herself outside and leaving Emily alone inside. The woman pounded on the door, yelling and screaming for Emily to open up. Eventually the aide called the supervisor, who sent over Cassandra, a co-owner of the service agency. She also called the police, trying to get back inside.
“It was the police who defused the situation,” Tom said. “Not her caregivers. They don’t know how to handle her.”
Cassandra had been at the apartment when Tom arrived. The police were gone by then.
“Where’s my daughter?” Tom had asked Cassandra, looking around the small apartment. “I want to take her home.”
“Emily’s not going to leave with you,” Cassandra warned.
“What do you mean? Of course she’ll go home with me.”
“No, she won’t. She won’t do anything anyone asks her. That’s the problem. She’s completely obstinate.”
“I’m her father. She listens to me.”
“I hope you brought your toothbrush because you’re going to have to spend the night. I have no other employees to put on this job, not with the way she treats the aides. She’s made it clear she’s not budging.”
“Where is she now?” Tom asked.
“In her bedroom. She’s not going to go with you. I’m telling you. She’s completely uncooperative.”
Tom opened the door to her bedroom. Emily looked at him from the bed where she was seated, her eyes wide.
“Emily, honey.” He sat next to her. “How about this. Let’s go home and see Mom. What do you say?”
With that, she stood and put on her shoes, ready to leave in an instant. When Tom walked out with Emily in tow, Cassandra was speechless. So much for Emily’s recalcitrance.
Now she was finally home and we were exhausted. All that mattered was that the incident was over. As was our UCLA experiment in supported living.
Still, I couldn’t sleep that night, worrying. We made it through this incident, but what about tomorrow? We needed to plot a course forward for her, establish how she’d make her way in this world when Tom and I would not be present as her mediators. There must be an answer.
We had no way to know it at the time but we were only months away from the moment our beloved daughter would finally be able to fully reveal herself to us.
1
There are different sounds I make, depending on what’s going on. The first is my “thinking noise.” With the thinking noise, I do a lot of high pitches and lower, almost musical sounds. It sounds like Eee-Geeee.
My next major noise is the super high-pitched squealing noise. It means I’m excited. I used to have a guttural yell for those moments, but it was too confusing and upsetting for other people, so I made a conscious change there.
That guttural yell is now my third noise. It’s when I’m overwhelmed or angry, and I use it much less often nowadays.
The fourth sound is part laughter and part excited utterance. It’s about looking forward to something so much that I can barely contain myself.
The fifth is the whispers and almost babbling. That shows up when I’m reaching my limit, even from good things.
I think it was my autistic brain—that part of me that helps me navigate the disorder but is not really who I am—who chose the sounds. Autistic brain is the disorder, a part of me but in some ways, not the real me.
Autistic brain is the mind space that stands between me and everything I want to do. It’s the part of me that hyper focuses on sound or sight or thought and pulling away can be challenging. Autistic brain is the Emily that is a stimming storm versus the calm, quiet Emily and settled Emily that I prefer. It is distracting and makes focusing incredibly hard. It is also exhausting. Like my brain is working too hard, or perhaps too little. And my body moves and my voice does not rest and my mind is someplace else. I am still learning to move past it, sometimes a fight and sometimes I can slip out. More often, it is back and forth.
I started these noises at five or six. I don’t know why these part
icular noises or why any noises at all. I wish autistic brain would tell me. I haven’t asked before. I will.
Emily was born in October 1991. I was forty years old and had an established law practice. Like most new mothers, I could not take my eyes off my daughter, unable to get over how wonderful and perfect and beautiful she was. I didn’t need to turn on the TV or talk with anyone. I could sit for hours looking at her, feeling at peace, flooded with awareness of how very lucky and blessed I was to be her mother.
She started smiling early, at only four or five weeks, offering grins to disarm even the biggest curmudgeon. She loved to look at people. My secretarial assistant was among our first visitors after her birth. As soon as she glanced at Emily, she commented, “I can’t believe she’s looking into my eyes. She’s so attentive.” Emily had a mound of curly blond hair, beautiful huge eyes, pristine skin.
People commented on Emily’s charismatic presence repeatedly. We thought that’s just what people said to parents of new babies, but we soon realized there was something unique about her.
Early motherhood had a few challenges I worked to overcome. Emily had arrived two weeks early, and I was unable to attend a scheduled hearing on a case in San Francisco. As I could not locate local counsel to assist, I worked to make arrangements with the court clerk and a very cooperative judge to participate in the hearing via phone from the comforts of my home. More incredibly, I pulled it off while nursing Emily in my rocking chair. It was all just so perfect.
My mother had lived a different kind of life, very much defined by her times. As a young woman, she’d worked as a bookkeeper but then stopped when she had kids. In the years when I’d been dating, she always hoped I’d marry someone wealthy and would never have to work a day in my life. My times and aspirations defined me, as much as hers did her, and I enjoyed my career and the connections I had outside of the home.
Before I met Tom, I’d been happy and mostly fulfilled as a single woman, successful in my career, and I’d even been able to invest in real estate. As a single person, I had what I needed and the financial independence to do as I wanted, whenever I chose.
I Have Been Buried Under Years of Dust Page 1