On New Year’s Eve, my son Nat drank some spiked lemonade and passed out after midnight — from exhaustion. His roommate John texted me the next day to tell me. I don’t know if there’s ever been a time in Nat’s 26 years of life when I have not been worried about him, but when I heard about Nat drinking, I was not. In fact, I was happy. This felt like a rite of passage. Nat partied with friends on New Year’s Eve.

I am not as odd as I sound. Nat has fairly complex autism, and so his social development has been hard-won. So even a night of drinking might actually be cause for celebration in my family.

Most of the time I need to read Nat without words,  through a combination of watching his body language, and listening to his very quiet unintelligible self-talking. When those strings of Nat-words first emerged in early childhood, they seemed to loop and coil in the air, playful, joyful, and we called it “silly talk” — a deceptively lighthearted term for something I actually feared like a disease. Surely this was a sign of deep disability, far worse than we had realized when he was first diagnosed. And it was a call to arms for me. I had to get rid of it, or he would never be okay.

This began the long hard era of battling autism. Nat’s teachers at the time exhorted us to engage him, as much as we possibly could, fight for him, keep the dragon at bay. Interrupt, channel, redirect these impulses of his, dam up the ever-opening tributaries of aberrant, abnormal behavior. Our kid had to be forced into normal, or else he would be lost.

And so, raising Nat was exhausting, debilitating — for me, but far worse, for him.  What is a child to make of always being given the message that he is off somehow, that every sound that comes out of his mouth had to be caught by watchful Mommy, and pummeled into something else?

I don’t know when the light went on in me, and I realized I could stop. “It” wasn’t working, anyway. Silly talk will out. And what a relief it was to finally understand that, and to let go of all the fighting. Suddenly I knew in my core that yes, my job as Nat’s mother was to help him be the best he could be, to educate him about how to act in the world, but my main purpose was to let him be who he was.  One way that I could help him do that was to arrange for him to live away from me. Since the age of 17 Nat has had roommates and caregivers, and I have been a visitor in his life. His teachers and caregivers took over from me the work of teaching him independence.  This positive development has been heartbreaking to me, though, because a part of me still fears that I am doing wrong, that I have to be the one in charge of who Nat is.

Every now and then, though, I understand that the truth is, I don’t. When I get happy news from John, who is also his caregiver, I realize that with or without “normal” words, Nat is his own man. I’ll drink to that.

You can listen and read my story from Tom Ashbrook’s “On Point” show here. My story is about taking Nat to my in-law’s Christmas dinner, and a sweet thing that happened as we were getting ready to eat.  Merry Christmas!

Recently while getting on the checkout line at a local supermarket, I sized up the backlog of items on the belt and the cashier and the packer — as I always do. It was around 3:30 in the afternoon, the last of the winter light thinning out, and the traffic outside was picking up. I was starting to feel the weight of the evening ahead sinking onto my shoulders. I wanted a quick checkout. The cashier had bright brown eyes and a cheerful round face peaking out from a head scarf. She had a strong smile and confident eye contact that told me all I needed to know. This was a good line to be in.

But then I saw the packer, moving as if in slow motion. Her mouth was slack on one side. I heard her explaining something to the customer ahead of me, something that did not need explaining. Ohh, I thought. Disability.

But, yeah, I have a son with a disability who also works in a supermarket, and I wanted to give this woman a chance.

My checkout went quickly, and before I knew it I was burrowing through my handbag for my wallet while the packer laboriously loaded my two bags. I was just writing the amount in my checkbook when I saw her hoist the bananas into the paper bag already stuffed with boxes of lettuce and the pineapple chunks. The bananas sat uncomfortably perched on the lettuce and started to tip. I reached out and quickly set it right, but the paper handle tore and the whole thing fell on the floor. She and I watched and waited for the disastrous splat. As the round plastic container of pineapple wheel to a stop, I knelt down and started stuffing everything quickly in to the ripped bag, while the packer exclaimed over and over, “Oh, no! That was my fault! I should have listened to you!”

I hadn’t actually said anything except maybe to murmur about the heavy bananas being tricky, but she was just horrified at herself. The more upset she got, the calmer I acted, determined that this would not be a problem. I said, “No, don’t worry, everything’s fine. Look,” and I gestured with the lumpy bag in my arms. She remained unconvinced and sad. I said again, “It’s fine. No worries,” and I walked out struggling with the bag, pretending I wasn’t.

I got to my car, with a prickly anxiety catching on my thoughts like thorns. What would happen to her? Would there be trouble? Probably not, because the store had to know about her challenges. And also because of me. I had tried to make the whole thing look like nothing, when really, as checkouts go, this was not that great. To have the customer fix the packing job, and then kneel down on the floor picking up her own groceries. To let her leave with a torn bag. In that little supermarket world, this was bad stuff.

And what if the customer hadn’t been someone like me? I got to thinking about the way the world is, beyond those automatic doors. People want things just so. We are all in a hurry — but to get where? Nowhere, really. Almost everything can wait, when you think about it. Yet we tailgate each other on the road bearing down on our horns, when we’re just trying to get home. Which can wait. Or to work, to an appointment. If we’re late there are consequences. So we have to be obnoxious, because we’re all a big bunch of dominoes. One tries to stand still, but then another one knocks into us. We just can’t stop. We can’t stop our twitchy brains or our wiggly fingers from pulling out the phone and tapping away. We are like sharks, we have to keep moving. Even sitting at a stoplight we have to do something.

We are a society that cannot slow down and breathe. We don’t allow ourselves to think. We expect everyone to move at top speed, ultra competent, no mistakes. But where are we all going? What is all the rush and rage about?

The days are growing shorter. Our hearts are racing, our teeth are gnashing.We say that this is the world, though. it’s a tough place. We have to live in it the way it is. Sink or swim.

But I think it can be different. We can slow down.

Our packages may burst. So pick them up. Because, really, we should be bursting. With joy. That we are even here, alive, today.

I’m now getting book signing and keynote offers for spring 2016 for Autism Adulthood, my book that will be out April 2016. Please let the disability/autism organization you love know that I am ready, willing, and able to do powerpoints, formal keynotes, informal talks, workshops, and readings. My topics are Autism and the Family, Autism and the Pursuit of Happiness, and of course Autism Adulthood. You can email my publicist Ashley Vanicek, avanicek@skyhorsepublishing.com, or me directly: susan@susansenator.com to make arrangements and to find out specifics about what I do.

My friend Michael Weiner’s monthly workshops can benefit *anyone* transitioning into the Post-22 disability world — and this particular one is about a Federal program (NOT JUST MASSACHUSETTS)! Here is the infom, but you MUST RSVP to Mike if you are going! Seating is limited. But the event is free.

Our next meeting is scheduled for 12/9/15 (Wednesday) at the Wellesley Unitarian Church, 309 Washington St., Wellesley Hills. It will be from 7:00 – 9:00 PM. The topic will be the Section 8 Housing Choice Voucher program. The presentation will be led by Mr. Steve Merritt, the executive director of the Norwood, MA Housing Authority, and the Senior VP of NAHRO (National Association of Housing & Redevelopment Officials).

Here is an example of the types of questions we plan to discuss:

What is a voucher?

How do you apply?

What are eligibility requirements?

How long is waiting list, and how does centralized waiting list work?

What preferences do most PHA’s use? What is the difference between the Section 8 program, and public housing (federal and state)?

What happens if a voucher if offered?

How long do you have to use? Where can you use?

What are “reasonable accommodations” under Section 8 (i.e. higher rent and utility standard, longer search time, live-in aides, renting from relative, reinstatement on waiting list)?

What is a “family unit”?

What is FMR (fair market rent), and how is it determined?

How much does voucher holder pay for rent, and what is subsidy?

Where can you use a voucher?

What is difference between a one, two or three bedroom voucher? Can you switch from a two bedroom voucher to a one bedroom voucher?

What is the difference between a tenant based voucher and a project based voucher?

Please RSVP to Mike Weiner if you plan to attend. Thank you, and enjoy the remainder of the long holiday weekend! Michael W. Weiner Financial Advisor Special Needs Commonwealth Financial Group 101 Federal St. (Suite# 800) Boston, MA 02110 617-312-5115 (Cell)

E Mail: MichaelWWeiner@financialguide.com www.commonwealthfinancialgroup.com

Pre-order my new book! And see early praise, below!

You can now pre-order my book, Autism Adulthood: Strategies and Insights for a Fulfilling Life. And thank you, John Elder Robison for a lovely foreword, and Ron Suskind, Arthur Fleischmann, Claire LaZebnik, Laura Shumaker, and Temple Grandin for beautiful blurbs. Pre-Order here.

See what is being said by beloved autism authors:

“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.

“There is a huge need for books to help individuals with autism make the transition to adulthood.  Autism is a wide spectrum, ranging from a brilliant Aspergers at a technology company to an adult who cannot dress himself. These individuals need very different services.  Susan Senator describes successful journeys, as well as her own with her son Nat. I highly recommend this book for parents and teachers who are guiding individuals in the middle range within the broad autism spectrum.” –Temple Grandin, author
The Autistic Brain
Thinking in Pictures

“From the introduction, Autism Adulthood: Strategies for a Meaningful 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

“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, author of Overcoming Autism: Finding the Answers, Strategies, and Hope that can Transform a Child’s Life

“Susan Senator’s book is a must read not only autism parents but for disability parents in general. Parents need to pick up this book early and read it often to prepare practically and emotionally for the future. It is well researched from a mother’s watchful perspective. It will get you thinking hopefully about the future from the start, and is full of tips and tricks that will save you time, money and heartbreak.” –Laura Shumaker, author of A Regular Guy: Growing Up with Autism

There we stood, Ned and I, just behind the line of the football field at Nat’s Special Olympics championship games. We were frowning a little, then smiling, then grimacing. We had layers and layers of sweaters and coats on to guard against the raw gray air. This wet cold seeped into every thing, even though it was not raining.

Play after play Nat dropped the ball or didn’t even try to catch it, walked slowly up and down the field, and stayed away from the other team. He’d be subbed out and would smile, so I knew he was enjoying himself. But he sure does not understand the game, or what he is expected to do with the ball on any level.

Ned’s and my frustration stung as we watched his one-on-one — a unified (i.e., non-disabled) player — just kind of talking to him in a normal voice, too many words. Might as well have been French or Hindi. Nat just will not process that kind of stream of sentences, it just roars on past.

I don’t want to feel this way, this tiring tug downward. But I did. One of the parents kept catching my eye and splashing me with sympathy. I gritted my teeth and gave nothing back to her. I. do. not. want. your. messy. pity. Pity can sometimes make the other person feel shame. God damn her for making me feel shame.

Then it dawned on me. Nat is pretty much the most disabled person on his team. Yes, it’s true. The rest of them can talk, can understand the basic rules, and most importantly: they understand what they are supposed to do and they want to do it. Their comprehension buoys their motivation.

I realized next that Nat is likely among the more disabled people in Special Olympics. The diagnosis of Intellectual Disability can mean you are only slower to process, or perhaps your language is affected and hard to understand. Maybe you have Down Syndrome and so much of your disability is physical or about delays. But your social powers in all of these cases are still intact. I don’t know enough to state this empirically but I know what I see. Even those who appear very very disabled in how they move or how their faces are arranged, or how they sound, they are still able to be a teammate and they know there are rules and roles in the game. I don’t think Nat is at that level.

For some time now, I think I had forgotten about Nat’s disability. Not on the surface, but kind of deeper down. You would not have noticed. The slogan “Presume Competence,” puts forth an attitude I’ve long worked towards. Now I’m wondering if it can go too far. All Nat’s life, he has tried and tried to do what is asked of him, and he has learned over long periods of time what to do in so many areas of his life. It is not about his ability to actually do the thing, execute the task.

Nat’s disability, the black hole at the center of it, is that he does not realize his part in things. He does not realize what is behind getting the laundry up from the basement or unloading groceries for me or going on a walk to a favorite destination. What is behind these things is will. Free will. Nat does not understand in the most basic way that he can be the origin of an action, a conversation, a want, an idea.

He does not know that he is the master of his own life. Nat’s disability lies in a pathological passiveness. Not laziness, not intelligence, not physical know-how. But generating original action. That is what he struggles with the most. So it really hurts when people say, “Maybe you should show him how to type.” Or “Maybe stop prompting him.” Or “put up pictures and lists telling him what to do next.”

It hurts that people do not understand my biggest failing as Nat’s mom: I do not know how to teach him how to do things for himself because the very nature of teaching him what to do is that he learns it still hooked to my teaching role. He does not detach his own desires and acts of fulfillment from me, and others. It is a terrible paradox. I cannot say, “Nat if you want to eat, you can eat,” because to him that means “Nat, you can eat now.” The “if you want,” is cloaked behind something in his mind. It’s just like Who’s on First, but it’s not funny. It makes me so sad. It’s like when I could never teach him the correct pronouns, either, for similar reasons. I can’t say, “No, Nat, it’s not me who wants it, it’s you!”

“You want it.”

“No Nat, you mean ‘I want it.’ You, not me!”

“You want it.”

I want it. To get better. But will it? Can he make this leap, across that giant field?

Does he have to? If this is his disability, this is his disability.

But I think he wants more power in his life. I think he knows that he is on the sidelines, even in the game.

Sometimes the thing you expect is just not in the cards. Latest example: I co-hosted an autism-friendly Halloween party last Saturday with two other friends to raise money for a favorite cause, Mass Advocates for Children’s new Autism Center. MAC is known for helping families with legal issues, as well as their research and statewide autism advocacy. They focus on low-income and minority families who may be less able to navigate school system special education than others.

When Jude, Tere and I first sat down to plan this we were thinking primarily of the little kids with autism who might have a hard time with the typical Halloween tradition of walking haphazardly through a neighborhood in the dark, in a strange likely uncomfortable outfit, ringing doorbells of strangers, yelling “chickacheet” or some other nonsense word, choosing among candies, and then NOT BEING ALLOWED TO EAT THEM. A sensory nightmare, but my favorite holiday all year. Dress-up and candy were and still are some of my absolute happiest things to experience. As a kid I planned my costume months ahead. As I got older I figured in clever layers for warmth so that my mom would not ruin my costume with my stupid snow jacket. And in my forties I started bellydancing, so that I could always surround myself legitimately with colorful sparkly costumes.

But Nat did not get Halloween and it was a great sorrow of mine. A selfish sorrow, because did it really matter that he could not see the good in the strange rituals illustrated above? Of course not, but I had had such high expectations of the fun I’d have with my kids on Halloween. Eventually Halloween became a new behavioral task, where we aimed to have Nat wear some form of costume, say the appropriate words to the stranger who opened the door, and wait til we go home to eat the candy. Whether once around the block or only three houses, if Nat could do those things, we would, as Ned put it, “declare victory and then get the hell out.” But over the years, Nat figured out Halloween and mastered it. He always wants to be Zorro. He even shopped for his sword and hat — with a fervor I have never seen in a store — and he insists on it every year.

So planning for this party was not about Nat’s needs. I knew he’d enjoy it. This was for the kids who might like some aspect of Halloween, and could enjoy it in their own way — stuffing themselves with treats while leaping all over the yard in a tophat, getting their pictures taken in the special photobooth, jumping in the bounce house. And I was the fortune teller: a perfect way to wear a gorgeous garish costume all day long.

Visit the website of Inside Out Booth to learn about more innovative ways to make use of a photobooth.

This role was perfect for me in another way. About 20 years ago I learned how to read Tarot cards. I did not believe in them, however; I may be a flaky Libra, but I could never bring myself to be convinced that there was some greater plan for any of us, no matter how prettily or shockingly coincidental the cards shook out. I did, however, find that the cards were a good tool to organize my thoughts and feelings, to determine what it was that was bothering me at the moment, or even to figure out what I wanted to do about a given circumstance. And if nothing else, they were fun.

I removed every scary card from my deck, like Death, or The Tower, anything with sorrow, figuring that I would be reading for children who might be more literal than most. I set up my little round table with a lace tablecloth and silver tulle that glinted like diamonds in that blinding fall sun. As if planned, dragonflies kept landing on the shiny tabletop, adding their magic. I told people that I usually just deal one or two cards and somehow the kid’s fortune would always end up being something like, “Oh, wow, this shows that you’re a good student, is that true?”

What I did not expect was that most of my “clients” were the parents, not the kids. Many of these people were autism parents I know in one way or another — our community’s connectedness is international and legendary. So there I was, in my splashy, bindi-infested regalia, asking them to cut the cards in the actual Tarot fashion, and doing an abbreviated, partly made-up form of a real Tarot layout. Because these were adults and people I cared about, I found myself trying remember the basic meanings, and if not, to offer ones that made sense. The parent would listen with wide eyes, and think about each card I interpreted. Sometimes I would pause, thinking, “Oh man that sounded stupid,” but then the parent would consider it and tell me what it meant in his or her life. From that, the reading would grow more intuitive, and then, more — well, accurate. Parents were asking me if they should move back into the corporate world or work from home, or if I could affirm great love in their marriage. and I found I could help them without telling them what to do. Sometimes we’d ignore the cards and they would just pour their heart out to me.

At first I was taken aback by this naivete. I thought to myself, “don’t they know it’s just me?”

But of course they did. And the more people who sat before me, the more connected I felt to them, and my readings. I started taking it all more seriously, because they were. Somehow the quiet corner of this energetic party provided a feeling of safety for them, and the deck of cards a bridge between us. I realized something: they just wanted someone to talk to, outside of their usual life. Somehow, being me-but-not-me helped create a connection that left every single one of my readees smiling. “Eerily accurate,” a few people said. But it was not because of me. It was because of that moment in time, the day. The special gathering of our special kids, so well-loved, so weighted with our hopes for them, provided us all with a flash of time when we were not serious, or worried, but winged and light — and  utterly completely ourselves.

.

Come to a lovely Autism Authors’ Tea, featuring poet Scott Lentine, Aspergian author and blogger; Jess Wilson, famed and beloved Diary of a Mom blogger; and me! I will be giving a sneak preview reading from my forthcoming book, Autism Adulthood: Strategies and Insights for a Fulfilling Life, (Skyhorse, New York City, April 2016) At An Autism Authors’ Tea in Newton, Massachusetts, 11/8, 3:30pam!

An Authors’ Tea To Benefit Mass Advocates for Children, Autism Center.
featuring

All my maternal life (almost 26 years as a mom!) I have been aware of the concept of inclusion. My babies have been the catalyst for my fervor on the subject. Nothing like children to make you see life as it truly is, red in tooth and claw. When Tennyson wrote this, did he have kids? Because in many ways that is me, indeed, as a mom: a hawk, well-bloodied from the fight. (Proud, prominent beak, muscular, and feathers easily ruffled.)

Inclusion is not just an issue for Nat, whose autism has put that topic front and center for me. I have been roused to the fight for inclusion of my other two boys as well, who are neurotypical — though not at all typical. With Max, I despaired of his reluctance to join in with sports, particularly in the tender middle school years when everybody had to be running somewhere with a ball in the air. Not my Max. He was the tall guy walking down the center of the soccer field, while his teammates ran and jumped and butted their heads together. I have to admit that I hated the closed club of boys in team sports because of Max and Ben, not Nat. In middle school Max labelled himself a Floater, neither belonging to the sports lunch table, the drama boys table, or the geek boys table. He would smile his dreamy smile and float along, head and shoulders above it all. He was happiest with a Lego movie camera in his hand.

Oh how I worried. Should I force him to try harder to be a bit like the rest of them? I would wonder. Should I interfere and set up playdates for him? But no, he would just smile and he wouldn’t really have to even say much, his refusal was as hard as steel. By the time he was in 8th grade, he had figured it out, he was simply Max, and just about everyone loved him. He ultimately went to film school. He is now the coolest person in Brooklyn.

So then there was Ben. Ben categorically refused to play in any reindeer games. He didn’t smile about it, either. He always had full critiques on why that life was not for him. Well — not as a 3 year old when he would just sit in my lap like a hard brown walnut, and watch those kids in Boys’ Dance class or soccer. It was not gonna happen. And it did not.

Again, I worried. Was he sad? Angry? What was it? Why was he alone a lot? The answer was staring me in the face, all around me — Ben’s beautiful, brilliant, heartbreaking art. The energy to create like that was being channeled right through him, onto paper, and later, digital tablet. Now, at the high school, he’s not only a artsy kid, he is art himself. He creates himself, works on himself, daily. He wears layers of forest-colored clothes, Celtic-like rings, copper, silver. Plaid high tops. Listens to music that sounds like water droplets on mushrooms.

Nat was not included much with his non-autistic peers, ever. No art classes until last year (at 25). Solitary, not group music lessons. Special Olympics rather than school sports. Special school rather than neighborhood school.

But so what? As his brothers have shown me, being included might be overrated. You hang with whomever walks along with you. If your peeps are all autistic and special needs, why doesn’t that count? Nat’s always hung out with autistic guys. Or other special needs kids. Does he care? Isn’t he smiling at their birthday parties?

Why does it have to be “typical” peers — for any of them? Haven’t they all shown me, each one, over and over again, that it’s okay to be different? It’s okay to be alone. It’s okay to be an odd duck, a black sheep, lone wolf.

If so, however, it’s probably best to have a mother who’s a hawk. But whatever animal spirit inhabits you, I’m sure it works somehow with your little critters.

Recently a friend added me to a Facebook group and at first I sighed and thought, “Not another one.” This morning, though, I needed something to read and I was too lazy to look at the odd little book I’m reading. I sunk my lips into the foamy first coffee of the day and started to read. And there it was, mothers posting about sending their autistic child to a residential placement for the first time. I saw questions about teens not yet toilet-trained — one of those worries that stings (and probably shocks some of you), but that you can still articulate. Other parents talked about their lack of income, having given up jobs to take care of their child at home — for as long as they possibly could keep them. This particular concern was smeared with stinking shitty guilt because she felt a little selfish to be worrying about that, too.

But this wasn’t even the bottom yet. How much was left unsaid — that’s the part that cuts. As deep as the grave. It is still with me, the chill of having to let go; to allow your child fade into the fog. He becomes distant; he has to. And so many will say to you, “That’s the way it’s supposed to be.”

Yes, but no. Of course, children grow and leave for new experiences, and they learn how to fend for themselves. But do ours? Do our severely autistic children — including our verbal but severely autistic children — ever learn to really fly straight and safe?  Perhaps they hop on the ground, or are lifted sometimes by a particularly good, skilled teacher or caregiver. Then they fly, alight on a branch, and you think, “Ah. At last. Thank God.”

Yes, but no. For the Mother Bird hovers nearby, maintaining her nest. Eyeing the sky, listening to the air. Never going too far away. For she’s learned that they fall off the branch, or like my Nat, they may stay there and tweet so softly, and look at all the other birds getting their own worms, chasing, mating. And still he stays.

You want to puke it hurts so bad sometimes, knowing you could not do this last thing for him. This perfect, sweet being that grew from a tiny lima bean into a fat healthy baby. He could have had the world. If only you knew how to get it for him. Some will say, “No one gets the world.” Or “You did your best.”

Yes, but no. Some do get the world. You did do your best. But you could not do it alone, and the others who try to help don’t even do it as well as you. You can’t blame yourself, you can’t blame them, you can’t blame autism, you can’t shake your fist at the gods. You just have to live with it and keep your bird’s eye sharply focused for as long as you can, on his potential, and you keep hoping, that thing with feathers.

10. Does he feel his life is terribly limited by his disabilities, and if so, has he made peace with that?

9. Does he feel patronized, talked down to, by me, and everyone else?

8. Does he get enough fruit/veg?

7. Does he sit around too much/is he bored a lot but unable to get out of it?

6. Has the medication actually helped how he feels or does it only look that way to me?

5. Does he like his job?

4. Does he miss his brothers, but not understand why they are growing up and have left/are leaving the house?

3. Does he wish he could talk to people, does he wish people (especially his brothers) would really try to talk to him?

2. Does he like living somewhere else? Does he wish for home?

1. Does he have bad dreams and doesn’t know how to feel okay from them?

BIGGEST FEAR OF ALL HAS NO NUMBER: Has he ever been abused/hurt/intimidated/bullied?

Answer: not only can I not die ever, I also should not be so ill-equipped to parent him.

Another thought: it is amazing, wonderful, and right that the institutions are closed/closing. BUT it is horrible that we still do not have really good solutions for inclusion.

Also, sorry to be negative.

Also, too bad, I’m human and it’s my blog, I’ll cry if I want to.

I went to the Arc of the US annual conference over the weekend, without any real agenda except to attend some of the excellent workshops, to network, and to have lunch with the keynote, Tim Shriver. I’ve been friends with Tim for about 10 years, and a fan of Special Olympics for about 15 years. And now into my life comes his book Fully Alive, which was published last fall. Well, I’m a slow reader. In any case, Fully Alive fits beautifully with the book I’ve just reviewed, Steve Silberman’s Neurotribes because of the light they both shine on the historically invisible people in mental institutions.

Fully Alive is Tim’s memoir, and it explains his personal journey towards understanding “what matters most,” a phrase he threads throughout the narrative. Key to his discourse is the parallel he draws between the story of his Aunt Rosemary’s life and how the Kennedys and Tim worked to improve the lives of people with intellectual and developmental disabilities (ID/DD). And Neurotribes is Steve Silberman’s history of autism — opening the attics and closets hiding autistics and seeing them fully human for perhaps the first time. Both Tim and Steve take us back in time and recreate a world that could not bear the sight of disabled people, that saw them as broken, useless, not worthy of effort or even life.

Rosemary Kennedy’s life hit a tragic note familiar to everyone — the failed lobotomy that took away most of her intellectual ability. But before that, she had only a mild developmental disability, and a good, full life — because she was always fully a part of the family. From the famous sailing in Hyannis to being presented to the Queen of England, Rose, her mother, always insisted that everyone include “Rosie.” In the book and at the keynote Tim recalled an evening where he had dinner with his uncle Ted and his mom (Eunice). That night he took kind of a risk and asked them if — and how — Rosemary had shaped their lives. He did not mean this in terms of the movements they championed; rather, he wanted to know how they personally felt Rosemary in their heart and soul. Tim and his family were not accustomed to talking this way, this soul-searching emotional digging. But after a long pause, Ted responded with a story that went something like this:

They were at a party in Palm Beach, when they were all teens. All the kids were together hanging out, having fun, but when he looked away towards the pool he saw Rosemary, alone, with her feet dangling in the water.

Jack noticed, too. He broke away from the crowd and just sank down next to Rosemary, at the edge of the pool, feet in the water. And they just stayed there, together, sharing their private moment.

Ted stopped, and Tim realized that was all he was going to get on the subject. But actually, he’d gotten quite a lot: that Rosemary was not to be forgotten, or left out, and more than that, she offered a whole different thing than anyone else in the family. In the book, Tim talks about Rosemary as the one person in the Kennedy family who did not feel she had to justify her existence. In a culture where everyone was exhorted to always give their best to everything — and be the best at whatever they try, and never rest on their laurel, Rosemary, by virtue of her disability, could simply be who she was.

After the lobotomy she was sent to live with a nurse in a very comfortable, lovely home in Wisconsin. But no one spoke of her, and she never came home. There was no more inclusion after that. From then on, Rosie was the family’s dark secret, until much later in life, when Eunice would bring her to their home. And so Tim got to know Rosemary as an older, very disabled woman, who mattered a great deal to Eunice. It was Rosemary who fueled Eunice’s fire to improve the lives of people with developmental disabilities. Probably the fact that Eunice had felt so close to Rosemary as they were growing up, and then so bereft when she was gone — in more ways than one — planted the idea that given the right tools and treatment, people with ID/DD could blossom and grow. In true athletic Kennedy fashion, Eunice chose sports and play as the medium, and held the very first Camp Shriver in the Shrivers’ back yard, when Tim was 3. She bused in children from nearby institutions and provided them with pony rides, balls and bats.

At the keynote, Tim said that this may have been the first time some of these children ever played outside. The first time anyone cared about what they could do. The first time they were actually looked at and allowed to be regular children.

The mind-blowing joy those children must have felt! But then, don’t I know a little bit about that? In the way that Special Olympics still provides a safe, supportive haven for all of us. Certainly for the athletes, who get to be brave and put themselves out there. They get to be seen and cheered on, when (still) so little of that comes to them in this complicated, high-power culture. Like Rosie among her siblings, there they can be who they are, and the best they are.

But also, what their joy gives us, the parents, the siblings, is the feeling that at least for right then, all is right in the world. In those moments, they are fully alive, and we are fully alive, because we can see that a life lit by the outdoor sunshine is what matters most.

My heart is heavy today. Suddenly I understand something in a new way and this clarity only makes me sad. I now know where they’ve been. I now believe beyond a doubt that the entire autism spectrum of people has always been here. And Steve Silberman is the one who found them.

But let me back up a little. All of Nat’s autistic (post diagnosis) life I have heard the words “Tsunami” and “huge wave” and “bubble” applied to the “onslaught” of diagnosed autistic people in the United States and elsewhere. “Where did all this come from?” is the question, asked with lots of hand-wringing and consternation. Two in 10,000 was the frequency of autism in Nat’s babyhood (1989). This kept shifting to greater and greater incidence until we got to where we are now, 1 in 68.

The mainstream refrain is “they have always been here, it’s just that the definition of ASD has broadened and covers many more people than it used to.” The anti-vax refrain is “this is an epidemic caused by environmental toxins, especially the prevalence of vaccines.” I don’t believe the latter, but that’s beside the point. To say that this number of people with autism has always been here but the definition had not taken everyone into account — this is not the full explanation. It is not a satisfying answer.

The answer is much subtler and complex than just to explain it as the broadness of the spectrum.  While reading Silberman’s book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity, something inside of me broke into a hundred pieces. I was conscious of a very familiar, very old feeling, one that wound its way around my throat like a python.

This was the way I felt when I read a Holocaust book.

The way Holocaust books go is you pick one up and you think, “Another Holocaust book, don’t I already know how horrible it was?” And then I read it and I learn a new thing, some terrible other thing those monsters did, and the horror grips me all over again. One time it was the piles and piles of shoes left behind after the gas chambers. Another time it was the forced surgeries, without anesthesia.  Soap and lampshades from skin. Or when a parent was forced to choose between children, or an adult son who let his father die in the ovens to save himself. Being a Jew, I naturally relate to the stories of the 6 million, though of course I’m aware of and horrified about the other millions of people: Catholics, gays, disabled. The millions in Stalinist Russia too. So much sad and gruesome death last century.

And here we have Steve Silberman, in making his case for the missing autistics of the past, talking about how the Nazis treated autistics, and the other populations. Showing us the scorn the Aryans had for autistic difference, but also showing us that this was nothing new.

I’ve always known about the institutionalization of people with intellectual and developmental disabilities, or the euthanasia of some, or those locked in an attic. But I never actually realized how many we were talking about. Silberman has searched the records of psychiatrists, institutions, sifted through tiny details like an archaeologist, and he has unearthed an entire lost people: the autistics of the past.

With a deft and gentle hand Silberman has reconstructed the diaspora of autism. And it is a heartbreaking account of lost souls, misunderstood, reviled, shut down and shut away lives. Silberman has effectively proved that the people we see now, up and down the spectrum, have indeed always been here, but because there was so little understanding of what to do with the “feebleminded,” as they were called, the “useless eaters,” the sick and irrevocably strange and different were sent away to institutions or languished at home or worse. Anyone with even a little autism was thought to be mentally deranged, broken. There was no cultural belief in special education, no awareness of how human minds can be taught just about anything. There had to be an evolution, centuries, millenia-long, before people understood that these beings are every bit as human as the rest of society, and thereby able to learn, grow, adjust, work, and be part of Us.

Silberman says, “In an eerie preview of the autism ‘epidemic’ to come four decades later, the prevalence of childhood schizophrenia started spiking in the midtwentieth century.” Just as we had an onslaught of people with ADHD when we first discovered it — and it became the diagnosis of the 90’s — just as bipolar is right now — childhood schizophrenia was one very popular explanation for people who were actually on the autism spectrum. That accounts for the deeply-involved, most disabled autistics.

And these were the people whose families were educated and well-off enough to even know to bring them to the few psychiatrists in the country at that time. Silberman finds that French physician Edouard Seguin coined the term ‘idiot savant’ as far back as 1869. Seguin wrote,“It is from this class, almost exclusively, that we have musical, mathematical, architectural, and other varieties of the idiot savant; the useless protrusion of a single faculty, accompanied by a woeful general impotence.” The real hero in the book, Hans Asperger, though practicing in the early 20th century, put this in a humane, 21st century light: “Autistic children have the ability to see things and events around them from a new point of view, which often shows surprising maturity. This ability, which remains throughout life, can in favorable cases lead to exceptional achievements which others may never attain. Abstraction ability, for instance, is a prerequisite for scientific endeavor. Indeed, we find numerous autistic individuals among distinguished scientists.” This was almost 100 years ago. This accounts for the Asperger types, the splinter skills.

Think about it. A child who presented as odd, to the point of not being able to talk until he was around five, and then, after that, presented as so strange, so unaware of or unskilled around others — Temple Grandin comes to mind — with no precedent of what speech therapy, sensory integration therapy, etc., could achieve — the common thing was to give up on this child.  So even the “higher-functioning” would have been put away. Yes, there were many many institutions back then.  More than you realize. And what happened there? They likely became worse, thereby proving the doctors “right.” Crowded into rooms without pants on and hosed off when they defecated. Things like that. Some of these people of course ended up in jail. Some — well, it’s too horrible to contemplate what a cruel, ignorant family might have done.

The Nazis exterminated the disabled first, before they got to the elderly or the Jews. No, we did not send our monsters to the gas chambers, but we did treat them like shit. They were mistakes, burdens, disgusting, useless, scary.

Without education, and without understanding the potential of people with autism, it would have taken a remarkably unique person (like Hans Asperger) to feel anything but fear and shame. About Asperger, Silberman says, “He christened this distinctive cluster of aptitudes, skills, attitudes, and abilities autistic intelligence, making the bold suggestion that autistic people have played an unappreciated role in the evolution of culture:

‘It seems that for success in science and art, a dash of autism is essential. For success, the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to re-think a subject with originality so as to create in new untrodden ways.’

But even the parents who would not give up on their children despaired of what to do with them and they would have to send them away because there was no known alternative. I often wonder what would I have been like during the Holocaust: a rebel with a gun, shooting at Nazis and hiding in the woods? A victim, too scared to move? Or someone who was wise enough to see what was coming, and got out in time?

And what would I have done as a parent of Nat one hundred years ago? I pray to God I would have said, “Fuck no,” to the psychiatrists and raised him to be the good man he is.

The autistics have always been here. We just did not see them, and if we did, God help them. Now we see them. They aren’t sent away, hidden, cast out. They are sent to school. They are trying to get work, any work, for at least minimum wage.

The real Tsunami? The real disaster? That we don’t have enough funding for all of these very different but very worthwhile people to live productively after high school.  The real puzzle? When are we going to wake up, treasure difference, and learn from it?

It’s nothing new for someone like me — a liberal Democrat — to wince at and deplore the things that Donald Trump and some of the other GOP candidates say. The Mexico Wall. The mistrust of social programs. The attacks on Planned Parenthood. The scary ignorance around climate instability. But it is the dangerous statements about autism that dig into me — the mother of a 25 year old with autism — to my core.

All of my son’s life I have had to combat wrongheaded ideas about autism. Not only that, first I had to realize that these ideas were inaccurate in the first place — and that Nat’s autism was not my fault. First there was that day, at the Passover table, before Nat’s diagnosis, when he would not leave the front door the entire time. All eyes were on me, filled with confusion, compassion, but also  — condemnation. “You’re paying too much attention to the baby,” my grandmother scolded, indicating how I was holding Nat’s newborn brother throughout the meal. This was what I believed, too, that Nat’s misery was strangling him and I was unable to parent him properly. Soon after came the diagnosis, when I heard the words “autism-like,” and the nausea I felt because in my ignorance I thought I’d caused it. My only familiarity with autism was what I had learned in a high school class in  1978 or so: that the disorder was caused by cold, “refrigerator” mothers. Luckily I had a humane doctor who knew just what to say, “Oh, no one believes that anymore,” he said, dispelling that cloud of poisonous lies in that air.

Still, my own ignorance nearly destroyed any pleasure I felt during Nat’s early childhood. The march of snake oil cures I was supposed to try for him, each promising Normal — if I only made the effort to get him blue-green algae, massive doses of vitamin B12, secretin, chelation, parasitic worms… just to name a few. Was I a bad mother because I did not chase after those “cures?” .

As an autism mom, you never really escape blame of one sort or another. Your kid is bothering the other kids in the sandbox. Your kid is too old to have a tantrum in the supermarket. You made a terrible decision and got your kid vaccinated. Now thanks to Trump and the lesser GOP minions, the alleged horror of having autism has reared its ugly head, along with the open assertion that autism is the very worst thing that can happen to your child. Once again we have the glaring spotlight on autistic people as nothing but medical accidents, weird beings to pity.

Society continues to focus on how bad autism is, but not about what autistic people need to live their lives. Autism adulthood services are what Trump should be shouting about. Why should an autistic person lose the job his school has secured for him, lose his supports that he had during his school years, just because he has turned 22? What happens to him then? Well, in a 2008 survey, 85% of autistic adults were living with parents or some family member once they crossed over into adulthood, and “only 19% of individuals with autism were employed…with 74% of those employed working less than 20 hours per week. And yet in the next ten years, 500,000 autistic adults will be aging out of school and into a society that offers them next to nothing in terms of help. Except isolation — and objects of fear and disgust.

I really resent this latest of Trumped-up charges. Yes, autism has been hard, but not as hard as the ignorance I’ve had to deal with. Or the nasty people who stare and laugh at Nat when he does his self-talking or flapping in public — something that looks odd but really helps him feel better for some reason when the overwhelming stimuli of the world threaten to engulf him.

When all we want to do is raise our kids to live in this world, to play, to work. My son is one of the most beautiful souls I know — not an angel, not an odd genius. Just a really good guy. Utterly connected to me, he still covers his own eyes when he sees me cry. He will do any chore you ask him to do, as long as he understand what you’re saying. His favorite places are home and JP Licks–a Boston ice cream store. He has simple pleasures, and he always strives to do his best.

So he’s neurologically challenged. So what?  To me, the debate, the controversy Trump has stirred up is indeed harmful to public health.  Because of the terrible bias, these fears about autism, autism-as-the-biggest-enemy, that keep the public’s thin attention span on the wrong point, and people with autism continue to lose out.

I kept getting reports from Nat’s Day Program — from a particular staff person — that were a bit negative in tone about Nat, such as how Nat was bumping into cars with the shopping carts, giggling too much. Yet everyone else’s interactions with Nat have been terrific. It’s been (almost) the sunny Nat of old. He is still quieter than I like, but he’s also more flexible and communicative. He seems to really understand a lot more that’s going on.

So I mentioned my concern to the program director, suggesting that perhaps Nat is sensing the staff person’s frustration and it is making Nat uncomfortable and thereby a bit anxious, loose, wiggly. Like maybe they are reacting off each other. This happens, right? We all have poor chemistry sometimes. And not everyone “gets” Nat at first. So… now they are observing the staff person and retraining! I am so impressed.

Today there was more good news. We and Nat’s Day Program have succeeded in moving Nat into a M-F work schedule, so that he will no longer be in DayHab at all! His earnings will pay for part of his job coaching and transportation, and hopefully he will eventually move out of being dependent on SSI (Supplemental Support Income) and will be able to move into SSDI (Social Security Disability Income). SSDI allows you to save more money without penalty. We are getting Nat onto our insurance once he is 26 so he won’t need Medicaid anyway. I feel like the less he needs from the government, the better, in so many ways.

Tried to ride with Nat. Had to wear long sleeves, because it is so raw and cold. Turned around when he said, urgently in ET style, “Go Home Go Home,” because it was starting to rain (goddammit). When he started to mutter about lunch (it was 10:30) I kinda lost it. Showered, cursing a certain disability. Apologized, and he sat there so still so innocent my heart broke. His profile was a flashback to Baby Nat. I started crying and he pressed his hands over his eyes. Had to stop crying, for his sake. “OK, I said, wanna make Pumpkin Bread?” Most serious baking ever.

It’s damn good. By my second piece, I hardly noticed the bitter edge of guilt mixed in.

Today I am honored to be published in the Organization for Autism Research (OAR) Newsletter. I love OAR. They consistently produce excellent research that families, self advocates, and professionals can use immediately. They are all about information that can help guys like Nat work, learn, be safe, and succeed. They also put out trainings for educators and employers, on how to integrate a person with autism into the worksite/classroom. OAR is one of my Go-To resources for just about any autism information. Here is the text, below:

Tough

I’ve posted this before, but because Amanda Baggs’ brilliantly different perspective is reintroduced to us via Steve Silberman’s bestselling book Neurotribes, I wanted to post it again. Ms. Baggs’ video changed my concept of how Nat may be on the inside, and of autism forever, helping me understand stimming and the beauty of a very different kind of mind. She grabs hold of our perceptions of autism, turns them upside down and shows you the glory of her autistic world.

If you’ve never seen it, watch it here: https://www.youtube.com/watch?v=JnylM1hI2jc

ps. Stay tuned for my review of Neurotribes, coming soon!