Susan Senator

How do you fill 168 hours of meaningful activity after graduation???

It was a good question that Rob Resnik, of Phoenix, Arizona asked the audience at Autism Society of America conference today. Several years ago this was a heavy dark problem for Rob’s son Matt, who is around my son Nat’s age and has a similar degree of autism — a lot. Back when Matt was entering adulthood, he could tolerate about “6 minutes” of work, according to Rob, who is an attorney. What were they going to do to foster independence in their son, and a satisfying adult life?

Rob and his wife Denise, a public relations director, turned to  Southwest Autism Association Research and Resource Center’s (SARRC’) “Rising Entrepreneurs” Program for help. Denise, Matt, and Rob did a little research and talking and thinking and came up with a bakery business. “I’m not a baker,” Denise said, smiling, “and you can ask my husband Rob: I’m not much of a cook at all.” Rob was not a baker either. Yet the idea of the bakery seemed right, seemed doable. With eight eggs, a Kitchenaid blender, and Denise’s grandmother’s mandel bread recipe, a biscotti company was born: SMILE, which means Supporting Matt’s Independent Living Enterprise.

Although baking was not their area of expertise, the Resniks were not burdened with fear of failure. In fact, Rob described his attitutde as “let’s see where this goes.” It may be that it was just this light, confident, but zenlike approach that brought them their success. They were wise to partner this outlook with very little capital expenditures — less to lose. They spent money on insurance but little else. They learned quickly, that making partnerships in the community was the way to ensure success. Rob said that there was no grants, no capital contributions, and no donations. They borrowed the commercial kitchen of a homeless shelter one day a week for baking. They were able to pay their employees — two other developmentally disabled young adults, Eric and Rachel — a living wage and stay in business.  Eric is a coworker. He’d never worked before. But Eric eventually trained Rachel, another coworker. Rachel was working in her dad’s office. After two weeks of working for SMILE she quit her dad’s office. She does baking at home but also talks to the Point of Sale people at the markets.

The plan was to fit the company to the employees’ needs. If someone needed a particular environment, they could do their baking at home, rather than at the shelter kitchen. They fit the tasks to the skills. There was a strict routine: Sign in; do schedules for each person; do the packing; take breaks; etc. Matt started the day with instructions on his iPad, like “wash hands, put on apron.” Tasks were broken down into small steps if that was what Matt or his coworkers needed. Now there are six employees.

The Resniks added a special ingredient to their business: a thank you note written to the customer, by Matt and his coworkers, is inserted into each box. Denise explained that their edge would be that this product would make people feel happy about their purchase.

And Matt? He now works 6 hours a day. The bakery is his consuming passion. In fact, while I was watching the family present a workshop at the Autism Society of America Conference in New Orleans, Matt was seated at the table in the front of the room, wearing a chef’s hat and apron, working on a shipment.

Now the Resniks have announced that they are transitioning the name of their company to Supporting My Independent Living Enterprise — they are hoping to teach others around the country how to develop SMILE bakeries. This put a huge, well, smile, on my face because my Nat loves to bake and needs a new job…

SMILE is a success. They sold over 150,000 biscotti to date. Denise felt that part of this success is due to the fact that everyone by now has someone with autism in their lives. And only now are people beginning to see guys like Matt and Nat out in the world trying to make their way. But instead of wringing their hands, the Resniks roll up their sleeves. Because they have an idea that works. “When people approach SMILE, it’s not a ‘feel sorry’, it’s a ‘feel good,” Denise said.

And it’s a taste-good.

Long yellow phantom fingers slide over your shoulders

Ghostly mouths cry from your arms

Ribs are slivered, silvered, glinting, teeth inside white skin

Seething with each breath, searing you

But you are silent

Or did you try to tell us

In those days so still. Stiff arms, stuck legs

Didn’t I know, though?

And then there’s the laughter to consider

Was there someone, red-angry, sucked dry — a human scab — held you down, bashed your chest

While a hundred blind eyes turned back to their Day

It’s been a while since I wrote a Keys to the Universe post, but I realize I have some new ones! For those who don’t know, the Keys are ten things or acts that always do just what they’re supposed to do, they are just as good as you think they’ll be, they’re perfect for a particular purpose, right when I need ’em.

1) Sweet hot cherry peppers — like candy but a vegetable

2) Nat’s new rock band — he does percussion

3) My screened-in porch — it’s newly painted gray and white and perfect with yellow cushioned furniture

4) Reverse Arabic releve step in bellydance

5) Elcim blowdrier

6) Our Cape rental — been going there since 2007

7) Talking on phone through my car — just push a button on the dashboard and there it is

8) Radio interviews — giving them

9) A great essay idea — nailing an essay, knowing that it’s going to be published

10) Catching air on my mountain bike — jumping rocks, roots, curbs, bumps, feeling both tires leave the ground, landing perfectly

How can I stop being sad/worried about Nat? I feel like I’m not supposed to be. I’m so well-versed in autism acceptance that I know I should not assume I understand what he is going through. I do not know what he is feeling if he does not express himself in a neurotypical way. Yet, I need to be vigilant in terms of his health, safety, and happiness. He is a dependent person. He is disabled.

So how do I make sure all is well in his life? What are the markers I’m to look for?

I have several tools at my disposal. I have my own education in social signs, which I use when evaluating what I’m feeling and what I think others are feeling. I’ve learned to read faces reasonably well, to interpret shifting, blinky eyes, to sense sadness in another person, and anger. But I’ve lived enough years as me to know that I’m sometimes wrong about others. My filter goes deep into my skin like catcher’s mask that is too tight, and may distort things I observe.

So when I see Nat furiously flapping and self-talking a blue streak, I have to wonder if something difficult is going on for him. Or when I see him under his covers during the day I wonder if he is depressed, because that is what I do when I’m depressed. How do I read the signs when I don’t speak the language?

I’ve been developing my own list of things I know, in a way of helping myself interpret and giving Nat what he might need.

1) Flapping and laughing: Feeling good. This is when I try to connect with him, when he seems open to sharing happiness.

2) Flapping and talking loudly: His normal state. I actually have to call his name, and stop him for a moment if I want to interact with him. So I don’t think he wants me to interact with him during these times. It’s like, why step into the ocean when the tide is churning?

3) Laughing and spitting: Happy but aware he may need to pull himself together. Laughing and spitting comes with sideways glances at whomever is in the room with him. But he also laughs and spits in his room. It’s not a dedicated spitting; it’s more like a side effect to the laughing. Sometimes I laugh with him and that is when he looks me in the eye, willingly. So I think it is a positive connection. I’ll take what I can get.

4) Flapping and then stopping and sucking his thumb: Something’s bothering him and he’s trying to calm himself. During these moments I try to gently ask if he is happy. This is utterly useless. Language is so hard for him during these times and my questions just make him stumble. I’m doing it selfishly, hoping he will suddenly respond the way I want him to. This state makes me the most unhappy because I become so painfully aware of our disconnect.

Am I saying that during these moments I want him to change? No. I just feel my heart clench, a common Mother pain we feel when we think our children are unhappy and we can’t help them. We just can’t, no matter what we want.

5) Smiling and pacing: Feeling really good (this happens most often when he’s just joined social group, and when he’s at Special Olympics, especially big competitions.

6) Being quiet in his room on his bed: ??? Tired? But is it okay for him to be up there for HOURS? Ben does it. I worry about that, too, but he tells me he is just tired. Max used to lie on his bed for hours, too. So does that make it okay, that Nat is doing it? They’re all different, dammit!

My unsatisfactory solutions: More lists. Because I don’t know for sure, I then tick off all the activities he has done over the weekend or during the week: Work, going to the gym. Cooking class, band practice. Special Olympics. Bike ride with me. Long walk downtown.

I am forever keeping the lists in my head, the “Is this enough?” list and the “Is he okay?” list. But nothing quite works to reassure myself that his mental state is fine. Last weekend when I saw him so busily vibrating hands, head, eyes, without any apparent recognition that others were around. This distressed me.

So I went back to my oldest mantra, my own version of self-soothing when my Nat obsessions kick in: It’s the disability. This is how it manifests itself.

The hardest thing about this disability (for me and perhaps for him) is that I don’t feel like I definitively know his emotional state. The behavior looks like anxiety. So should I be trying to intervene somehow so that he is less anxious? What would that look like, though? Anti-anxiety meds? Therapy? Where do I find a therapist for his discomfiture? And is that called for, if this is his natural state?

And if this his natural state, is he actually helping himself? And it just looks different from how I help myself?

At times like this I kind of wish I was like others who decide something is true and then stick with it. They have the ground of their own certainty holding them up.

But I can’t seem to do that with Nat. I need more evidence, because I fear that I will miss something important.

It’s been a really long time since I wrote just to write. For me, not with an eye towards publication somewhere other than here. I’ve been doing so much promotional work and now presentations for the Autism Adulthood book that I am feeling the need for a different thing to focus on. The thing I do when I want to get away from writing is to write.  The thing I want to write about when I’m not writing about autism and my family is autism and my family.

Yeah, I’m not that original. For the last 26 years my whole life’s purpose has been to be a mother. This was not what I was raised to be. I was raised by a Career Woman, a focused, driven mother who went for her MLS degree when I was little and became part of the workforce before it was a thing. Mom was a feminist, and so that term has never been negative to me. I went to college thinking about what I was going to “be.” I studied humanities, world languages, history, literature, philosophy, to prepare my mind and soul for adult life. Mom and Dad taught me to value a life of the mind and then to get a purposeful job and make the world a better place. These values of theirs permeated everything in my childhood. From lists of books that I needed to know, to trips to the National Parks rather than Amusement Parks, to discussions about foreign policy and war, the rebellions of the ’60’s, to what it means to be a friend, a daughter, a sister.

My mother was a good, loving mother, and yet I never imagined myself as a mother. I rarely played with baby dolls. I played with Barbies. I pretended I was older, I lived to be sixteen.  I worked as soon as I could, as a babysitter, then a waitress, then an advertising assistant in a work/study program.

But when I met Ned, everything stopped. And then picked up a forceful speed, hurtling me towards him, with a certainty that I’d never felt about anyone else before. There was a rightness, a safety with Ned that was as exhilarating as it was comfortable. He was everything to me: handsome, mysterious, funny, brilliant, kind, and my best friend. My first love, my first lover. And I was his. I thought only that I needed to make sure we would be together the rest of my life, and second to that, I thought I would be a professor of history.

We got married, and I immediately became lost. The career did not come together, but even worse was my crisis in purpose. I did not understand what it meant that we were now married, different somehow than what we’d been. I still loved him, so much, but I no longer loved me. A whole decade of uncertainty and OCD and hypochondria began for me then, and a twitchy sadness and anxiety that made me want to run away, I could not stand the feel of my own skin.

So I did what you are not supposed to do when you feel this way about yourself — or so they say. Five years into feeling like that I decided to have a baby. I thought this would anchor me, keep me from floating around afraid of my own body. I was 27, so it was easy getting pregnant.  I knew exactly the moment Nat was conceived, because after a particularly festive and loving Valentine’s Day, late into the night, an image of an explosion came into my head.

And just like that, my life as I had known it, ended, and a new one began.  It became the age of Everything You Know is Wrong. Nat turned my life inside out, that’s no secret. But it’s interesting to me to see it in the long view, that in so many ways he came along right when I needed him to. And no, this is not Inspiration Porn for y’all, I’m not saying he was put on this earth for me — I’m not that egotistical. But then again, what’s wrong with believing that your baby is so special that he has a special purpose for you, for him? Who the hell gets to say that this is not true, even though so many other things are true as well? Of course babies happen randomly, autism is genetic roulette — or let’s say, genetic blackjack — and all children have a unique path and affect their parents in mind-blowing ways.

So, yeah, Nat. And then Max, and then Ben. I had them all pretty young, and all thought of doing something “else” with my life just got vacuumed right out of my universe, like a black hole. And yet, what was left was everything rather than nothingness. Now I had a purpose, even if I didn’t always enjoy it or understand it. There were so many times when suddenly things would all come together and my little sons would indeed explode me into perfect pieces of happiness. Max’s easy smile. His utter sweetness, like cake batter — a flavor I never get tired of. He showed me how much fun a mind could be. And Ben’s breathtaking clarity, his black jellybean eyes, seeing everything. The joy that day when he started drawing — pirate ship after pirate ship after pirate ship.

My whole purpose was to take care of those babies. But not alone. I had Ned with me, who split himself — lucky he is a Gemini — and became a father and remained king of my heart — along with my three princes.

And although I can’t say that I never looked back, I can say that I became me again as soon as Nat burst into my mind/life. Max came along so quickly, like Nat’s twin, utterly and magnificently different, beautiful and free. Six years later, my Ben arrived, the rushing back of a long-delayed high tide, sweeping me up in his energy.

Carrying me right back into Ned’s arms.

And there I have stayed, anchored and held by the four of them.

I had an oped in today’s Washington Post, about helping Nat register to vote. You can read it here.

Library Journal highly recommends my book!

Susan Senator (Making Peace with Autism) hits the nail on the head once again with this work that shares her continuing journey as the parent of an adult with autism. Parents often worry about who will care for their children should they no longer be able, but that concern lessens once children are grown and out on their own. Parents of children with autism, however, must address their fears and seek answers to such a scenario before and into their child’s adulthood. Senator tells her experience helping her son, Nat, find a living situation that will support his needs and allow him to be a part of the community. She also relates stories of 30 other families, and the solutions they have found for their children with autism. By explaining how she and others in similar situations manage on a daily basis, the author encourages parents to seek new resolutions in addition to available options for their child. Lists of resources and planning ideas are included. ­

VERDICT: Straightforward and to the point, Senator’s book addresses many parents’ worst fears and inspires them to step up and create a situation and a community that can ­support their child in their absence. This is a must-read for any parent with a child on the autism spectrum as well as care­givers, siblings, and extended family. Suitable for any library with parenting and autism collections.—Lisa Jordan, ­Johnson Cty. Lib., Overland Park, KS

CONTACT: Ashley Vanicek

(212) 643-6816 x 288

avanicek@skyhorsepublishing.com

“In this book, like her others, the wonderful Susan Senator gives voice to those who are too often voiceless—folks with ASD who seek what they deserve—lives of purpose and possibilities.” —Ron Suskind, Pulitzer Prize–winning journalist and bestselling author of Life Animated: A Story of Sidekicks, Heroes, and Autism.

Autism Adulthood:  Strategies and Insights for a Fulfilling Life

 By Susan Senator

Foreword by John Elder Robison — author of Look Me In The Eye, (Crown, 2007) and the newly published Switched On, a Memoir of Brain Change and Emotional Awakening, (Spiegel & Grau, March 2016)

“In her frank and deeply touching new book Autism Adulthood, Susan Senator shares the intimate details of her journey with her son, Nat, as he takes his first steps toward maturity in a society that offers few resources for people on the spectrum after they “age out” of the meager level of services provided to school-age children. She faces the big issues – housing, employment, relationships with siblings, finding trustworthy caregivers – head-on, and offers practical strategies for giving young autistic people the best chance to lead happy, safe, and secure lives, mapping a pathway to the future that offers autistic people and their families real hope, rather than false hopes built on misguided promises of a cure. By doing so she offers a blueprint for a world in which people at every point on the spectrum are treated as fellow citizens who deserve respect and the ability to make choices, rather than as puzzles to be solved by the next medical breakthrough.” —Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity

“As an emotional resource, Senator’s book is excellent.” —Kirkus

“Mothers, fathers, and siblings should read this honest account of family life with autism.” —Temple Grandin, PhD, author of Thinking in Pictures and Emergence: Labeled Autistic for Making Peace with Autism

“From the introduction, Autism Adulthood: Strategies and Insights for a Fulfilling Life will bring you to that dark place parents of young adults with autism fear. But just as quickly, Susan offers practical advice through story-telling and concise, how-to strategies that will leave you feeling optimistic, hopeful, and back in control—all any of us can ask for. A thoroughly readable and important book.” —Arthur Fleischmann, author of Carly’s Voice: Breaking Through Autism

“A brilliant book.” —Tim Shriver, CEO of the Special Olympics, for The Autism Mom’s Survival Guide

“Autism Adulthood is a book I will be recommending to every autism parent I know. Senator is as warm as she is wise, as thoughtful as she is knowledgeable, as compassionate as she is informative. Her rallying cry of “All we can do is love each other” will resound in any parent’s heart. Senator loves fiercely—which means she does everything she can to ensure the best life and future for her adult child with autism. This book will inspire the rest of us to do the same for ours.” —Claire LaZebnik, coauthor of Overcoming Autism, with Dr. Lynn Kern Koegel

Autism. It’s a scary word to some, and one that parents are hearing more and more. Beyond the trauma of the initial diagnosis, the difficulties with finding the right schools and educational programs, and the toll it takes on the whole family looms something far more uncertain and terrifying:

What will happen when my child grows up?

In her new book Autism Adulthood: Strategies and Insights for a Fulfilling Life (Skyhorse Publishing, April 2016), Susan Senator takes the mystery out of adult life on the autism spectrum and conveys the positive message that even though autism adulthood is complicated and challenging, there are many ways to make it manageable and enjoyable. From her own son with autism, now in his twenties, she has learned to “never say never.”

Autism Adulthood features thirty interviews with autistic adults, their parents, caregivers, researchers, and professionals. Each vignette reveals firsthand a family’s challenge, their circumstances, their thought processes, and their unique solutions and plans of action. Sharing the wisdom that emerges from parents’ and self-advocates’ experiences, Senator adds her own observations and conclusions based on her long-term experience with autism. Told in Senator’s trademark warm, honest, and approachable style, Autism Adulthood paints a vivid and thought-provoking picture of many people grappling with grown-up, real-life autism. Senator’s is the only book of its kind, as real families share their stories and their creative solutions.

About the Author

Susan Senator is a writer, an activist, and the mother of three boys. Her books include Making Peace with Autism and The Autism Mom’s Survival Guide. Her son Nat, now in his twenties was diagnosed with autism at the age of three, and she has been advocating for people with autism ever since. She lives in Brookline, Massachusetts.

To request an excerptor to arrange an interview with the author, please contact:

Ashley Vanicek / (212) 643-6816 x 288 / avanicek@skyhorsepublishing.com

Skyhorse Publishing, Inc.

307 West 36th Street, 11th Floor

New York, NY 10018

(212) 643-6816

www.skyhorsepublishing.com

Autism Adulthood

Strategies and Insights for a Fulfilling Life

By Susan Senator, Foreword by John Elder Robison

Skyhorse Publishing hardcover, also available as an ebook

On Sale: April 26, 2016

ISBN: 978-1-5107-0423-7

Price: $26.99

320 pages

People First or Autism Pride?

You will find in reading this book that I interchange the terms “people with autism,” with “autistic people.” I am well aware of and respect the People First movement—the widespread effort to avoid defining someone by their disability (as in the latter example). A few of the people I interviewed specified that they preferred People First language, and I made sure I wrote their section with that in mind. However, I also know of many people on the autism spectrum who prefer being referred to as “autistic.” This group feels that they are indeed defined by their autism, that their personality is wrapped inextricably in autism, and, fur­thermore, that this is a point of pride. Hence, my solution is to use both terms interchangeably, because I see the value in both philosophies.

No doubt people will also note that I do not use the term “autism spectrum” too often, nor do I specifically distinguish between descriptions like high functioning, low functioning, Aspie, Aspergian, Aspergerian, pervasive developmental dis­ordered, ASD (autism spectrum disorder), and just plain old autism. This is because the current DSM-V (Diagnostic and Statistical Manual Volume Five) has eliminated many such divi­sions on the autism spectrum, focusing instead on descriptive designations, and on determining possible features of autism (e.g., social, communicative, behavioral, sensory, or intellectual deficits) rather than labeling kinds of autism. Though there has been much discord among the medical, psychological, and autism communities about these changes in the DSM; many agree that terms such “high-functioning” or “low-functioning” autism are definitely outmoded, as they sprung from verbal competence or lack thereof. We now know that a person can be without verbal speech and still have the ability to express himself successfully. Likewise, someone with verbal speech and a very high IQ might be completely debilitated by depression or social, sensory, or behavioral challenges. So I, too, will stick to descriptions of skills and challenges to give you the full human picture of my subjects.

Speaking of the full human picture . . .

In my narrative, I try to avoid describing an autistic person’s unusual actions as “behaviors,” “stims,” or “stereotypies.” To me, these terms are used negatively to signal the need to control or eliminate the behavior or activity, and I believe for the most part that autistic people need to act the way they act. This includes talking to oneself, flapping, pacing, thumb-sucking—all the things my Nat does with autistic exuberance. I’ve learned from Nat and from more communicative adults with autism that it’s “better flappy than unhappy.”

Here is something I wrote for MariaShriver.com, about one of my favorite organizations, Special Olympics, and one of my favorite people: Nat.

The first clear memory I have of actually working on Nat’s adulthood was probably toward the end of 2007, when he was seventeen. I was sitting inside a stream of weak sunlight, in the playroom where I keep all my files. The usual dust powdered the reddish-brown floorboards and the windowsills. Folders were spread out on my lap and on the gold carpet under my folded knees. I was looking through papers—reports and dog-eared, hastily-scribbled notes I’d taken at some seminar or other for parents. Brochures spilled out, unopened, glossy, packed with jargoned paragraphs intended to give me hope. The letters were small and black, and they didn’t really say anything. “We’re here for you.” Or, “We’ve provided services for people with intellec­tual disabilities and their families for decades.” Or, “Our adult residences offer professional, loving care for your loved one.”

I was searching for a list, a phone number. My fingers shuf­fled through the papers like little Flintstone feet, trying to get that big stone car moving. I felt inexplicably tired. That guy . . . that person who’d called me a year or so back, about Nat’s respite funding, from the Department of Mental Retardation, as it was called then. What was his name? David something? I closed the folder and sat back on the rug and sighed.

Okay, don’t just give up now; you have to do this, I told myself. So where do I begin?

The school hadn’t told me anything about whom to call, what to see. Okay, I thought. What am I looking for in terms of Nat’s future? It can’t be that complicated, can it? He will need to live somewhere. Who helps with that? How do you get the money for it? Agencies, vendors. Which is which? My heart was speeding up again. Deep breath.

Okay. The phone book. The blue government pages. I hefted the White Pages from its dusty shelf, onto my lap and found the listings, the blue pages. A memory flickered: the government departments were called agencies. Our agency was the Department of Developmental Services, DDS, (formerly the Department of Mental Retardation, DMR). The vendors were the people who provided the actual services used—such as job coaches, transportation to the workplace from the day program, feeding and toileting assistance. Vendors are mostly private nonprofits that specialized in disability services. I breathed a sigh of relief, having solved one tiny piece of the impossible puzzle ahead of me. I found some phone numbers. I called the DDS and I talked to a woman about what I was looking for: “Well, my son is seventeen, he’s still in school, but I know I’m supposed to start planning for where he’ll live after he is done with school, so I’m calling to find out what I should do next.”

There was a pause. I think the woman actually chuckled. “He’s only seventeen? Oh, you have time.” I could feel her atten­tion receding from me. Wait! Come back! What should I do? Isn’t there something I’m supposed to do now?

But she was not interested in my son or me. We exchanged one or two more pleasantries and I hung up and put the folders away for the right time. But I knew, in my heavy heart, that she was wrong. The time was now.

Copyright © 2016 by Susan Senator
Foreword copyright © 2016 by John Elder Robison
All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Skyhorse Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.

Late January is a very still moment in the year, even when there’s a gusty storm outside. The world might be going to hell in a handbasket —  but there are some things that will never change: the way we want to hibernate, and turn inward during the dark winter.

My husband, however, fights this. Armed with lists on index cards, his laptop, and decaf, Ned remains full of purpose even as the wind rages against our windows. He always has a project going — most often it involves writing code or helping others fix bugs in their software, online. Even though he is sitting down, he is never still: he drums his fingers when they’re not typing, and he hums when he pauses to think.

When he’s had enough of his digital world, he looks around for our sons to see what they’re up to.  Natty is content with winter inactivity like me. In the normal weather the rest of the year, he and Ned will take long walks downtown. But in the deep winter, Nat will be on a couch under the pilled blue blanket, or burrito’ed in his own bed most weekend afternoons.

Ned lets Nat be on these January Saturday afternoons because they’ve already done a lot: Special Olympics basketball for two hours in the morning — I’d say Nat earns his nap. Ned, too, has earned a nap because a lot of that time in the gym he was barking orders at Nat — and others on the team. Ned’s never been a Special Olympics coach but he acts like one. He never misses a practice, and he stands on the court during their games. Well, often, too, he is typing at his laptop in the bleachers, but he’ll always have an ear out for what’s going on — especially if Nat is slacking off. “Nat why are you standing way out there? Get over with the team!” he’ll yell.

Once we’re home, Ned will turn to our other son, Ben. Ned won’t say this but he longs for the days when the boys really wanted to spend time with him. This is not a Cats-in-the-Cradle type of regret; he played with them all the time back then. It’s more that it is hard for him to stand inside this new phase in our lives. It seems like the one easy thing he can do with Ben right now is drive with him. Ben is seventeen so even this is a struggle, even though it is clearly in his interest to get his license. But one of the items Ned keeps in his list is getting Ben to practice driving. Needless to say, Ben has improved very fast.

Sometimes I despair over Ned’s regimented routines. I pout like a child wondering where on the index cards am I? But the thing is, I know I can get his attention anytime I want. If I told him I needed him to snuggle me right now, he would. If I told him I want him to come home from work early, he probably will. But I want to be barked at, too, sometimes. I want him to say, “Susie, what are you thinking of doing now?” Sometimes he does that, to be fair, but most of the time, we are orbiting each other, coming together for our coffee and our tv show. And bedtime. I feel, though, like I am the one who keeps track of the life of our marriage, and keeps count of when the last take-out occurred, when was the most recent dinner out, or how’s the sex been lately. I have never been able to guess what he’s thinking, or predict when he’s going to turn his love my way, but as the Allmans say, “Lord you know it makes me high” when he does.

I can get his attention, but I don’t try that much, at least, I don’t overdo it. On these cold days I find I’m craving my own company, baking or something like that. I try to get Nat to do this with me, especially when I’m baking cookies. Ben rarely spends time downstairs with the three of us; he’s in his ginger-candle-scented room cave, either “arting” or texting, snapchatting, whatever-ing friends. I’m comfortable with Ben’s independence, for the most part. It feels like it’s supposed to be that way. But I probably wouldn’t be this okay with that if he didn’t also just come over to me sometimes and show me something amazing on the computer.

Lately I couldn’t stand the cold that comes through our old window sashes — you can feel the breeze just standing near them. So I went around the house with old scarves of mine and stuffed them into all the window gaps. Weird that I did it, rather than Ned. There are some things that are just not on his list. I don’t mind. Now there are splashes of fuschia and jade poking out from curtains. I know that this kind of thing I do charms Ned. He’d never think to use beautiful scarves as a cold buffer.

We’re so different. He’s Nordic snowy silver and I’m Mediterranean terra cotta. I bake bread and splash stories on the screen while he types green on black. I’m impulse, he’s lists. I guess I’m his heat. And he is my shelter, he shapes me, he is clear thought and purpose. He’s the reason I can stay put, inside, and it’s okay.

Any social movement ultimately opens up to new discourse, different points of view. Autism is no exception. We’ve had the anti-vaccine groups vs. the medical/pharmaceutical/scientific institutions. We’ve had identity-first vs. person-first debate. We’ve had the Autism Speaks Awareness campaigns vs. the ASAN (Autistic Self-Advocacy Network) nothing-about-us-without-us/acceptance, not awareness, campaigns. And I believe each stage in the modern history of autism (starting in 1981, when Lorna Wing discovered Hans Asperger’s work and came up with the term Autism Spectrum Disorder), is important and must be faced courageously and thoughtfully. Wing’s contribution ultimately broadened the diagnosis to include many many people who — Steven Silberman points out — were otherwise marginalized in institutions as psychotic or intellectually disabled or criminal; or marginalized as weird, odd, crazy, nerdy, unlovable.

As ugly as these rifts have become, each phase, is important in the progression of autism as an important social movement.

The current rift is a new iteration of the AS-Self-Advocates division. The rift began with AS (Autism Speaks) using stories of suffering on the part of autism families to raise mainstream awareness of what families need.  The tension came from the AS emphasis on Autism-As-Child-Kidnapper. The positive sides of autism were not a factor, the idea of autism as identity was not actually known. I believe that Autism Speaks acted in the best interests of the cause of putting autism on the map. No one — other than autistics themselves, autism families, a handful of researchers — was thinking about autism, period, before AS came along with its empty stroller ads or Autism Everyday video. I give AS the benefit of the doubt, considering the pervasive view then, the ends-justify-the-means battle mode.

Before long, self-advocates who could communicate protested this attitude, rightly so, because it is potentially damaging to autistic people. The AS-type of autism hatred was a direct attack on who the autistic self-advocates were. This makes sense: if you harp on extreme and negative conditions of a disorder, then all people will want to do is eradicate it like cancer. And for a small, damaged minority, this view may translate to justifying violence towards autistic people (never ever justified.) Or, much more likely, for well-intentioned but misguided parents, questionable or even harmful, unscientific “cures” or treatments, like the use of chelation (which killed one child), or giving a child bleach enemas, or the drug Lupron that staves off physical development in the child.

These are horrible approaches, unjustifiable. But let me ask a question, without condoning anything harmful to a child:  Might there indeed be something environmental harming our children? This is a question worth asking, and it is a thread that runs through the anti-vax, anti-autism groups. That, plus the GI connection to some autistic-like symptoms — these came in part from the anti-autism group. Formerly discredited, now many doctors urge looking at intestinal issues and physical causes for behavior problems. Furthermore, there are immune-compromised children who cannot be vaccinated but should not be ostracized for their decision.

The new issue is a further evolution, and the term “Inspiration Porn” sums it up. We now have autistics who can communicate decrying the parent bloggers who appropriate their autistic child’s life story and use it as a way to promote themselves, or to get sympathy from other parents and groups. I’ve read tweets that express outrage at the pain parents describe of dealing with autism. The mostly legitimate fears for the parents’ own children get translated to callous, clueless unjustified whining.

This is a bloody split, because it gets right to people’s hearts. If you have a child  — or an adult loved one with autism who cannot communicate, is self-injurious, acts out, destroys things, runs away — you may have a very difficult time even believing that the self-advocates understand your child’s — and your — struggles. And the name-calling, the put-down of “Inspiration Porn” doesn’t help. The challenging behaviors and episodes are very real. Yet they are not the whole picture of autism by any stretch. And yet again they may be a very large picture of some families’ lives. Mine included, at several points. No, we don’t want society thinking Autism = Violent People. But we do want help for those families who are living with it. Yes. We. Do. We just need to find balance in how we talk about it.

There are self-advocates, too, who explain much more fairly and accurately the harms of ableism, like this one. I’ve learned about ableism and the ways I’m likely guilty of it, from the self-advocates like this one and from ASAN. I’ve asked myself what I should do to change, if indeed I am guilty of Inspiration Porn myself. The ableists see everything through the Poor Autistic filter. They want to force the mainstream, the neuro-typical. They see autism as inferior to non-autism.  Hugely important for society to see this, the wrong of it, the harm, the psychological fascism involved.

And so: there are no definitive answers here. I understand all the sides. I have friends in all camps. I’ve also seen my Nat evolve and my own perceptions of him have radically changed over the years. I also believe that things are not clearly sides at all, that this is one big Spectrum spectrum. There are grays here. There is an entire rainbow of viewpoints. The non-negotiables, of course, is inflicting harm on others. Or using your child without considering his/her feelings about what you write. Or vicious attacks on honest, worthy, awareness-raising posts. Each part has for better or worse contributed to putting autism on the public’s radar. Each group can and should learn from the other.  Let’s hope that that radar remains focused on resources and accommodations and scientific research that helps autistics realize their potential, and helps families connect with — and help, yes, help — their differently-wired loved ones.  Only with balance, bona fide science, courageous open-mindedness, and compassion for all of us will we move forward, faction-free.

I wrote this two years ago.

I’ve been wondering lately if I can become a ghost after I die. I am not looking to die — not at all. It’s just that I have a severely autistic son who is 24 and I can’t imagine how anyone will look out for him the way I do. Even though Nat has two brothers, who are lovely young men — but at 16 and 22, they have begun to grow their own lives. I know they will be there for him in one way or another, but still, it is not the same. I am going to have to depend on the kindness of strangers.

Over the years, I have had to let go of Nat in one way or another. The first day of preschool I sent his father to go with him. I’m ashamed to say, I just could not go. The break had to be clean for both of us. It was anything but. My husband spent the morning out in the hallway, listening to him cry for us, wondering how to help him get through it, knowing that he could not go in. It’s hard enough explaining to a typically-developing child why he has to go to school, but how would we get Nat to understand? It felt like abandonment to me.  I don’t even remember how I spent my day — it is lost to me, as so many of my days felt at that time. I even remember feeling like a ghost when I returned with him soon after this, to our playground, hollow inside, watching the other moms and their perfect kids.

He got used to school, of course, and so did we. But the fear, irrational perhaps, was still there, its clammy breath at my back. I don’t even really know why I was so afraid, but I think it had to do with not knowing how he felt about it. My question — unanswered — is always, “how much of his life does he understand?” If one has such little language, such a choppy processing ability, how can we know what he knows? It is all so raw, a cut inside that just doesn’t heal. I grieve even now that he’s 24, because the limitations and the sense that I have somehow abandoned him never quite go away. I don’t mean to sound entirely gloomy, it’s not like that, either. Nat has brought me some of my life’s deepest joys. His first sentences, first friendships, first job — all of these milestones have been infinitely sweeter because of the long wait, the hope growing cold.

I felt a similar lacerating pain when Nat had to move out, to live at his school. He was nearly 18 then, and people tried to comfort me by saying that it was normal for kids to move out of their parents’ homes at 18. But I was just so ripped up at that point that their logical words just seeped right out of me. Just like when he was three, and off to school for the first time, he had to go. Living with him was threatening to destroy our family. We could not manage his anxiety and he became frighteningly aggressive and out of control with us at times — once, he attacked me at the subway platform and another time he broke a window with his head. But my bond with him never broke. Even when I was scared of him, and terrified for him, I always knew him, I always felt the soul inside. But clearly he needed to live with more structure, with trained people who understood how to help him calm down. But I was sick about it, for nearly a year, crying bitterly every Sunday when we dropped him off again — even though he was improving. I was sure that I’d failed him.

So how can I get my head around planning for my ultimate departure? There is no state mechanism set up to help parents like me, no bank of trustworthy mothers who would take my place. I hear that the state “takes over” if there is no place for the disabled adult to live, but what is that like? I can’t leave Nat’s life to chance. And how does this work for the thousands of others in my position? It is probably somewhat like taking over for aging, ill parents. Except that is kind of a normal stage in life. There has never been anything normal about the way I have had to parent my son. My connection with him, though strong, has always been amorphous, spiritual, heart-to-heart. Our relationship is always present tense, it resides in being with each other, breathing the same air together. But when I’m dead, that connection will be severed. He won’t be able to know me anymore; we won’t be on the other side of the door, or here for him on weekends. Perhaps the most horrible thing about that, my deepest, bottomless fear, is that in being dead, I won’t even be able to care.

Last Saturday night I did not want to cook. I had been good all week, making stupid boring dinner every single day — well not Tuesday, okay, pizza (salad for me) — but I was just lusting for dinner out. Dieting all day. All week. All year. We settled on Cheesecake Factory, can’t be too fancy with Ben and Nat. Cheesecake Factory is middle ground. Large, comfortable seats, fairly interesting psuedo-Egyptian-Southwestern theme going on. No weird smells, food’s always good.

We got there and it was a 50 minute wait that became an hour. We were so hungry, and standing around the mall with the vibrating alarm in hand, waiting for it to come to life. Everyone else hanging around was waiting, too. It was weird — they were all so friendly, and relaxed, and so were we. One family was taking up most of the seating but my knee was killing me, and when the dad got up, I sat down, smiling and apologizing. No problem. Then an old man with a cane came over and I got up. “You sure, Dear?” he asked. So sweet.

By the time we sat down, Weight Watchers had become Wait Watchout in my head. I did not care. I ate and ate. Nothing was bothering me. Ben was happy. Nat was into it. He looked at the menu and said, “Pasta.” As soon as the waitress came over and asked about drinks, he said, “Sprite.” It was just perfect.

We even had a shared enemy — the woman behind us. She was puffed up with Restylane, and her entitled teenage girls were brats, off shopping while their dinner was coming. Who cares, really, but it gave us something to laugh about. The girls even lost the mom’s charge card. “I don’t know!” they screamed. “Well go back and retrace your steps!” the mom yelled, exasperated. We just kept smiling smugly at each other. My boys are so great, I thought. They never shop. Ha ha. Just me.

It was nice to be Mrs. Obnoxious with my grown-up, well-behaved sons. It’s unusual. Often I envy the other tables, families with three little girls, for God’s sake. No, I don’t want girls but they just look so pretty and perfect. My boys are scruffy, big men. Gloriously male. But jeez, how did I get so old?

Well, perfection is only a dream. The false note came when Nat wanted another Sprite and Ned countermanded it. He interrupted and told the waitress no, treating Nat like a child. Okay, Ned is his father and does have to protect Nat to keep him healthy, but still — Nat is 26. I whispered to Ned: “Next time talk to Nat about how it’s probably too much sugar, suggest water, rather than speaking for him.” Ned nodded. “He’s a man, after all,” I said. “You wouldn’t do that to Max.” Inside I burned for Nat being patronized, even by his loving father.

Later that night I had a dream that Ned was making Nat eat a potato, uncooked. I told Ned the next morning and said that I didn’t like how the Sprite incident had gone, and the dream was about that.

The sad thing or maybe the happy thing is that Nat moves on. Is it because he’s used to being told what to do, or is it because he’s not oversensitive like me?

Well, there’s always a spot that mars the perfect surface in this life. So sometimes you just have to fix the hurts with treats. That’s what I do. Food = love in my sweet family. And when it came time for dessert, I insisted we get the Chocolate Tower Truffle Cake and a coconut chocolate cheesecake, dammit. Forkful after forkful of the creamy sweetness, your teeth sink in just right. Let it spread like frosting over your dear heart, my Nat. And Ned, who probably felt bad about what he’d done.

I didn’t even feel sick after. It was just enough — too much is always enough.

I don’t know, the outing was just so unexpected. Usually Ben doesn’t want to go, Nat is sloppy and eats too fast. Ned gets grumpy waiting for the check. I get stressed out about which is the least fattening entree. I then order the wrong thing.

Not this time. We just went in as ourselves — and it was as (almost) as smooth as that cake.

My latest piece is on the website MariaShriver.com. It asks, “what makes a life worth living?” Enjoy!