Susan's Blog

Thursday, September 24, 2015

The Real Autism Tsunami

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?

 

 

Tuesday, September 22, 2015

Trumped-Up Priorities

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.

Good News for Nat

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.

Sunday, September 13, 2015

Pumpkin Bread With Guilt Filling

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.

Friday, September 11, 2015

“Tough Love” column for OAR

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:

 

Organization for Autism Research

Tough

Love

By

September 11th, 2015 | (0)

Being a parent is hard work. But it is especially challenging when the people in your community are not supportive and understanding about your child with autism. Guest blogger Susan Senator writes about the frustration she felt after a family outing to the ice cream parlor, and the importance of supporting all the members of her family.

I hope this wasn’t the worst father’s day ever for Ned. We just took Nat to his favorite place, JP Licks and he had promised he would not laugh loudly and spit. But he did. Ned stood up, took Nat’s ice cream and threw it away and made him leave. We stood outside on the street while people stared at poor Nat, so upset, so incredulous that he really was not going back to JP Licks. But Ned was right. “He has to learn how to contain this,” Ned said. Yep, the world is not going to change *that* much.

Meanwhile Nat kept saying, “No laughing, go to JP Licks.” Over and over. Walking towards the store, then coming back when we called him. His eyes going to Ned, then back to me.

My heart was breaking. I’m sure Ned’s heart was breaking too. One young family was staring, the mom raising her brows at her husband, and I looked at her and said one word, “Autism.” Shame on you. And another family nearby had two sons, staring and whispering. I said to them quietly, “Don’t stare,” and I motioned for them to turn around, right in front of their dad. Yeah, happy father’s day to you, too, and your sons. So much for living in a town that considers itself one of the most progressive and diverse on earth. Not so much when it comes to an autistic young man and his dad losing it.

I just wanted to be swallowed up by the sidewalk. But I said to Ned, “Okay. I’ll go get him some more. If he laughs again, we’ll throw it away again.”  Ned agreed, reluctantly. I got Nat the ice cream, smiling at everyone (on the outside) who had just witnessed us leaving.

Nat grabbed the ice cream and started shoveling it in his mouth, turning to go in JP Licks and eat it in there as always. No way I was going to do that. He was so upset, but we sat on a bench nearby while he gobbled it down. Finally he said, “Push the button, push the button,” meaning the crosswalk light, because he wanted to go back in the store so badly. “Nat what do you want to go back there for,” Ned asked, though we both knew.

“Wash your hands,” Nat said. They went back to do that.  It went fine.

Ned then announced that he was walking home by himself. I was really glad he had decided to do something that would make himself happy.  He’s always carrying us around on his shoulders. He does the heavy lifting. I guess we both do, but it’s getting pretty hard right now. I’ll never give up, and he won’t either, but sometimes you want to. I hope his walk home feels good.

 

About the Author: Susan Senator is a writer, activist, and the mother of three boys. Her oldest son Nat, 25, was diagnosed with autism at the age of three. Through her essays, articles, and books, Susan is trying to make sense of autism, find a way to her oldest son, and help others at the same time. Susan Senator runs a blog, where this post originally appeared. Her latest book, ‘Autism Adulthood: Strategies and Insights for a Fulfilling Life’ will be out in April 2016.

Wednesday, September 9, 2015

Neurotribes/In My Language

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!

Tuesday, September 8, 2015

A New Milestone for Nat

I am thrilled to report that our psychiatrist is recommending we take Nat completely off Risperidone. He’s been on a low dose for 14 years. It has always been our goal for Nat to be free of this serious medication, but it certainly helped him — along with dedicated education and communication development. Nat has accomplished the near-impossible: even with great neurological obstacles, he has taken in so much information about how the world works, and he has painstakingly learned how to help himself. To me, this end of the Risperidone is a true milestone.

((Just a note of caution to all Risperidone users out there: make sure you follow up with a qualified MD periodically while using this medication. The doctor will need to monitor certain physiological conditions (blood tests, EKG) that may be affected by Risperidone. You also need to make sure your Risperidone-using guy is not exhibiting any odd behaviors like lip smacking. This could indicate a seriousside effect called Tardive Dyskinesia. Take videos of him/her to show to a doc at the exam, particularly when anything weird or concerning is going on.))

Don’t judge anyone whose child is on medication. You don’t know what the inside story is. If you’re concerned, you can gently say something like, “there’s so much to that drug, a lot of follow up with doctors, is that difficult to manage?”

Most of us are doing the best we can in an age where not enough is known but plenty is expected.2015-09-06 09.43.06

Nat waited alone with the bikes outside of Starbucks for about 10 minutes while I was inside standing in line to get him the brownie he is eating here in this pic. Not to mention a 4 mile bike-ride in which we crossed a major roadway.

Monday, September 7, 2015

A Fairy Tale — Kind of

When I was on my bike today, it wasn’t until I was about 3 miles from home that I thought about Nat. So that was about an hour of no thinking. And I realized — not for the first time — that that is why I ride: to have a sliver of the day when I am not thinking.

Today was a little different from the usual silent thrumming bicycle high. At that moment, when Nat took shape again in my mind, I thought, “So this is how it will be.” I was seeing my life from a different perspective, watching it narrow to a distant vanishing point: the future.  If my life were to continue basically like this, where we have Nat home on the weekends, the days would kind of always unfold like this one. And it was alright.

Here’s how it usually goes on my summer Sunday. I wake up first. I test my knee and heel for pain before standing fully. I go downstairs, make coffee, turn off the alarm, and open the front door. I look at my garden, and every color is bobbing there, melding into one another above the green grass, like a pointillist painting.

I go back in, get my coffee, and wander into the garden. My thoughts are little-girl-like now, things like, “magic,” and “secret,” “treasures.” Looking and looking is all I want to do. I peer at all the plants, hoping to notice something new: a cucumber curling fetally under the vine; a tomato that is the perfect red. The tall phlox, dying, the wine-colored asters popping open.

Nat has come downstairs in the meantime. He perches on the white couch, blue shirt, blue eyes, corn husk hair, gold skin. He’s as perfect, beautiful, complete as my garden. He is watching me. Waiting. He’s waiting to eat.

As soon as we make eye contact, he holds me there, his whole expression willing me to ask him if he wants to eat. He won’t do it himself. At least, not here. In his apartment he gets his whole breakfast himself while John stays in bed. But here, we have our established patterns that just won’t change.

I’m usually the one to look away first. Forget that autism stereotype about the eye contact — that’s not the way it happens here. I take a breath; I wanted some more time to myself, though I’m glad to see him. But as soon as he is down here, the me that was out in the garden slips underneath tall strong alert Mom-me, and she lies down quietly, like Sleeping Beauty.

We eventually do get our breakfasts and eat together silently. Somehow it is already 8:30. Ned is down here, laptop open, humming to himself. When I bring him his coffee, he is always surprised and grateful, deriving so much pleasure from just having it arrive, perfectly sugared in the familiar green mug. Now I do something like empty the dishwasher, and we talk a little, about nothing. The day feels strong and ready to be plucked.

I might take Nat on my ride, I may not. Yesterday I did, today I didn’t. I wanted the whole thing to myself today. But I felt a little guilty. I left him watching Totorro, which is now — what, 20 years old? It was so strange when I first saw it all those years ago, I could hardly stand it. But so many sittings with Nat-Max-Ben and, well, repetition made the heart grow fonder. Now that blare of silly trumpets made me smile. Nat was settled in, dreamy and comfortable, so my guilt was only a twinge. But the twinge is still sharp, but small, like a pinprick.

Then, I’m on the ride, plunged in like a swimming pool feels when you’re a kid — nothing like it. What’s in my head? I just don’t know. Turn here, push down, go up, go fast, breathe hard, feel the breath catch again and slow. Flickering light, blinding shade. Dreamlike and yet fully alert. Looking for my favorite spots, that bend in the road where suddenly there are no houses, that yard that looks like a meadow. The magic slides over me and I’m simply flying.

So I came down to land as I approached the city-like traffic of home and I thought, “this is what it will be.” Caring for Nat, caring for Ned, (and Ben and Max when they’ll let me), all my favorite jewel-tones, threads woven into my story, work and play, worry and love, sun and shade. And I suppose, in a way, — as long as I have some beauty to sink into, some thrilling rides, and the magic of my family, I am living happily ever after.

 

Sunday, September 6, 2015

I miss his stimming

What am I to conclude, now that we have very likely nailed Nat’s additional diagnosis — not catatonia, but mild bipolar/mood disorder? Now that he is most of the time serene, attentive, communicative, rather than high-strung, pacing, self-talking? He is rarely giddy now, rarely quick-moving, on-the-go. Rarely just sitting in a stony stupor, either. Maybe never.

We found after many doctor’s visits and a normal EEG and much observation that Nat has not been exhibiting autism catatonia after all. That the straight arms he makes are a sign that he is trying to be still and quiet almost as if he’s trying to be “good.” I don’t ask that of him, it is wrong and patronizing, but someone else in his life may have. Or he’s simply trying to fit in? I don’t know. But we have not seen any more freezing up like the day at Special Olympics in June. So we are now interpreting those hesitations differently.

We, along with a highly-repected psychiatrist, have concluded that Nat has been having mood swings. The still silence is a manifestation of depression. The giddy out-of-control laughter is a sign of hypomania (not full-blown hearing-voices psychotic mania. Hypomania for me is more about phases of high energy, almost too-much initiative, taking on too much, being almost overly happy, and then it leads to a crash, a too-quiet, hide-in-my-house/bed mode). He has deep mood swings, just like me and other members of my family may have. But I have that diagnosis and the medication I take is in the same category as Nat’s new medication. It is an anti-seizure med that works for bipolar, too. My own psychiatrist explained it thus — or this is my lame-man’s understanding: around the neurons are this structures that take nutrients from the outside of the cell and turn with them inside the cell and deposit them there. But my little structures on my neurons move too quickly, they swing too much.  It is easy for me to visualize how this kind of dynamic can translate to a mood-swinging personality. So the Lamictal stabilizes them. I can also imagine how this is related somehow to what seizures are.

Nat is on Tegretol, which our doctor says is a cleaner medication for bipolar. And he has shown a lot of stabilization, calmness, serenity. He has not become a sleepwalking zombie or anything like that. It’s just that he has slowed down and become more of a listener. He sits with us more often. He answers questions readily.

It is a new Nat. I always thought the highly-active, chattering, stimmy guy was the guy. What if it isn’t? What if that excessive motoric activity was simply a way for him to cope with anxiety and mood swings — leading to the shutting down and then the giddy hysteria?

Yes, he seems a lot more mature and “there.” And yet where is my old Nat? Is it okay if I miss all the stims?