Susan's Blog

Tuesday, October 13, 2015

That thing with feathers

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.



Tuesday, October 6, 2015

My Top 10 Nat Worries

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.


Monday, October 5, 2015

What Matters Most

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.



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




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:

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?

Wednesday, July 15, 2015

Shared Living and AFC: 2 similar residential options

I am posting this golden summary of how to create a shared-living-style home for an autistic loved one, with permission from Cathy Boyle, President of Autism Housing Pathways. This is a crystalline explanation of how you, yes you, can make this happen in Massachusetts. Every state is different, but it’s likely that you can assemble something similar in your own state; just be sure to check with your state agencies about what is possible there.  I have edited here and there.

Do not glaze over. Read what you can. Come back to it. Process, breathe, take your time to understand this. You can do it!

“Accessory” Apartments: An Adult Living Option

DDS (Department of Developmental Services) is increasingly emphasizing a residential option called “Shared Living” for those prioritized by DDS, (those with DDS Priority One residential funding) and “Adult Foster Care”  for those who are not. However, unless the individual has at least a two-bedroom unit of his or her own, in such arrangements the provision of services is not separated from the provision of housing. Individuals may find themselves having to move every few years as support providers move on. This instability is not good for anyone, particularly those with autism.

Those not prioritized by DDS face daunting waiting lists for subsidized housing that meets their support needs. For instance, while state elderly housing may appear to represent a shorter wait than a portable Sec. 8 voucher (2 years versus 10-12), for those who need a two-bedroom unit to accommodate an Adult Foster Care caregiver, the waiting list for a state elderly two-bedroom unit may be 20 years.

As a result, the default option for families is to continue to have their child live at home, with a family member acting as the Adult Family Care support provider. This is not a sustainable, long-term solution. However, a two-bedroom “accessory (otherwise know as “in-law”) apartment, attached to the family home, may be. It allows the individual to stay put when the caregiver moves on; allows the family to provide respite; allows the family to act as the Sec. 8 landlord when a voucher is obtained; and, when the family moves out, can provide a source of rental income to help cover respite costs. The value of the Sec. 8 voucher can also help the family to make payments on any construction loan that was needed to add the accessory apartment.

There are two major barriers to this arrangement. One is zoning; many municipalities rigidly limit accessory apartments. The second is the cost of paying for any respite not provided by the family or through DDS individual supports, combined with payments on the construction loan. To address the first, Autism Housing Pathways has proposed municipalities consider adopting a model zoning bylaw, which would permit accessory apartments for elderly or disabled relatives of the homeowner as a “by right use.” (definition below)

Bill S. 708, currently under consideration,would help address the second barrier. It would allow homeowners to take out a loan from the state, potentially with deferred payments and 0% interest, for 50% of construction costs or $50,000, whichever is less.

This makes the following scenario possible:

  • The individual with a disability signs up for Sec. 8 (preferably at age18).
  • At the same time, a family member becomes the Adult Family Care provider, and receives a stipend of about $9,000/year.
  • The disabled family member still lives with the family member, but the family member saves the Adult Family Care stipend in a separate account.
  • In approximately 10 years, the individual receives a Sec. 8 voucher and the family has saved $90,000.
  • The family member takes a loan from the state for $50,000; the family now has $140,000 to devote to creating an accessory apartment.
  • Construction costs in greater Boston range from $150-$200/sq. foot. At the lower end, a 900 sq. foot accessory apartment would cost $135,000, and costs are completely covered by savings and the loan.

At the higher end, the family might need to take out a home equity loan for $40,000. A smaller unit would obviously cost less, and could completely avoid the need for a home equity loan.

  • The Sec. 8 voucher can cover the cost to pay for the home equity loan. Families do need to be aware they will need permission from the housing authority issuing the Sec. 8 voucher to be the Sec. 8 landlord for a family member. Although typically not permitted, it is often in fact allowed as a reasonable accommodation for a person with a disability.
  • By Right Use (also called Use by Right) refers to a property owner’s use of property and structures in manners consistent with that which is permissible in the zoning district that the property is located. A ‘by right use’ is a use permitted in a zoning district and therefore not subject to special review and approval by local government.
Thursday, June 25, 2015

About Difference: If I had a Hammer

Today I got an email from someone in Nat’s life, suggesting other possibilities for his silent times. This guy, whom I think is very caring and wise, had downloaded info on autism and catatonia right after I told him about our neurologist’s suspicions. He felt in his gut that this was not quite it. Instead, he felt that what he’d been observing was not a “freezing-up” on Nat’s part at all, but rather, a withdrawal that suggested depression.

I spoke to Ned about this and he said, “It’s a whole Rorschach test.” Exactly. Everyone looks at Nat with his own filter, his own experiences. Our neurologist is one of the best in the country for autism, and she suspected — or feared — catatonia. But that is the population she sees. If I were to take Nat to a psychologist — someone who could communicate successfully with him — would he be able to uncover reasons or at least signs of depression?

Of course, such a psychologist does not exist. Every time I even hinted at wanting to get Nat a psychotherapist just to check in on this possibility, throughout his life, I was ultimately referred to a behaviorist. The implication of such a referral, of course, is that any of his concerning behavior is due to some sort of distasteful autistic activity, and not to something in his life, in his thoughts, that saddens him. (Please be assured that “distasteful autistic activity” is not something I would conclude or say, but rather, what I imagine other less-evolved humans would think. Basically, the neurotypical world Nat grew up in had one big message for him: you are not good the way you are.)

Am I overstating this nasty bias on the part of the general public? I don’t think so, but that, of course, is my filter. I have always sensed, noticed strangers’ responses to Nat’s “stereotypies” such as flapping (I call it his puppet hand) or talking to himself in his own language. From babies to old people, everyone neurotypical can sense that Nat is Different and therefore someone they can be curious about, at best. I would welcome an open-minded, kind curiosity — though maybe not even that. I usually do not like people’s assessments or questions about Nat no matter how well-meaning. Other people’s word choices and unintentional judgment and downright stupidity about my son just plain bug me. If I trust the person, I try to correct them. I am that obnoxious. God, even the wrong kind of look when I tell them that no, he did not go to college even though socioeconomically it is a given for my children. The sad wondering. Hey man, I don’t need you to wonder. College ain’t for everyone, the shopping carts at Nat’s supermarket are not going to put themselves back.

If you were to dig deeper, you might detect that my filter is shame. I am a big believer in the muddiness and complexity of feelings, and so I will admit that there is that in there somewhere. The shame is mine. How I was so irresponsible as to give birth to someone who cannot survive in the world on his own. How did my body dare fuck up so much? Not in creating Nat, God no, but in being unable to teach him how to survive. My shortcomings become so obvious when you see how much Nat needs. And he’s my darling, and I cannot do right by him.

My shame, ironically, is for the others in the world who are clueless. I am embarrassed that they forget their humanity, their manners. That they betray their own shortcomings in their limited response to Nat. Their filter, too, is their own, and I often hate them for it.

“When all you have is a hammer, everything looks like a nail,” Ned once said to me, explaining this phenomenon of others’ filters. Well, I guess my response to that is, let’s build something great with that hammer, something new and beautiful, starting with how you look at my Nat.

Wednesday, June 24, 2015

Finding Peace

I escaped to Cape Cod for an overnight with my parents, to get a little peace and some distance from what’s been happening with Nat. My car tires crackled into the old familiar pebble driveway and I felt a huge weight drop inside. I remember thinking, “Thank God it’s all the same as ever. They’re all the same as ever.” Like Scarlett saying, “It’s there. Tara’s still there,” after the burning of Atlanta.

I took my bike off the back, and jerked up the handle on my suitcase and walked into their little cape house. It was quiet, the air was warm and huglike and smelled faintly of old dry wood or something. Mom was in the shower, Dad was on the Nordic Trak. I set down my suitcase and relief gave way to my sadness, now that I could let myself feel it. It welled up inside of me like vomit, unstoppable, came out in ugly heaving sobs.

I felt better after I was done – just a few seconds, really – and went down to the basement to see Dad. George Harrison’s “Wah Wah” from The Concert for Bangladesh was blasting. Dad was shoving hard at the handles of the contraption. He looked different. He wasn’t wearing his usual silvery light rimless glasses; he had on big brown frames which made him look like Younger Dad, the dad of my adolescence, when such glasses were in style. Dad, ever loyal to all things and people, never got rid of them. He noticed me and smiled, his whole lower jaw pulled into a sharp square. Dear Daddy.

“Hey! Oh, you look so beautiful,” he exclaimed, untangling his ropey legs from the Nordic Trak like a crab crawling out from seaweed. Sweaty kiss, and then back on. Exercise is everything in their lives, and now in mine, too. It feels like every time I’m with them, at some point we are going to discuss how great riding bikes is, as if this were a brand new discovery. “And the smells,” I’ll say. “Mm,” they’ll say. Mom might quote a Times article about endorphin rush studies or long-lived athletes versus people who “just walk like 20 minutes every other day.” We are Exercise Supremecists. It is our religion, our obsession. This is how we bond, over exercise, food, and intense conversation.

With food, we’re usually talking about what we’re going to eat, what we wish we were eating, what we are definitely going to avoid. Setbacks in diets, success and new outlooks on food. As if we are ever going to suddenly become those people who can take pizza or leave it. The Senator family lives to eat, not the other way around. Hence the obsessive exercise. It’s the talk that I mostly go there for. While Mom is going back and forth with berries, peanut butter, yogurt, I summarize the very latest about my family. Right now the deep concern is Nat, and why he gets so still and slow-moving. I tell them of my heartache, the lack of insight, the poor state of adult autistic healthcare. And just Natty, is he suffering? Is he confused and frustrated about what’s happening to him?

We talk and talk and talk. An hour runs by, even though this is prime bike and beach time. There’s really no way any of us are going to stand up yet from the table, though the food is now just smears and crumbs on blue glass plates. But I’m like a bee stuck in honey, it’s just sweet, sweet, sweet.

I do understand how lucky I am to have people like them in my life, still vital, so wise, but also so funny and poignant in just how flawed and human they are. They’re slim muscled and bone, sinew, and such delicate skin. They are in their late 70’s, and there’s something so tender about that, about them, that makes me need to be near them. In every way yet in no way at all in particular, they make me feel better about Nat. My void inside is full again, and I know what I need to do when I get back. I have strategies and steps now, that have collected out of the familiar conversations and the eating. Pretty soon we’ll ride. Probably through the woods up to the dunes and look down at the ocean. Always the same, but never boring.

I don’t know why it all helps, exactly. I mean, obviously the love is all there, an actual presence, like the heavy aroma you drink in on your bike, when you pass that high wall of privet hedge, on the way to the beach.2015-06-22 14.30.28-12015-06-22 19.46.552015-06-22 19.47.41

Sunday, June 21, 2015

Tough Love

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 f***ing bitch. 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 asshole 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.

A Good Father

I’ve been so down about Nat, but late last night Ned and I realized that no matter where this strange new behavior is coming from — I mean the spitty laughing — we should be helping him learn to regulate himself, not just feel helpless and sad. Ned said, “Nat, remember, you like to get ice cream and you can only do that when you’re feeling calm,” and Nat stops and says, “Get ice cream.” And he’s lucid again.

So we are going to try using our leverage to show him that he *can* control himself.  That is what it’s like living with my darling Ned. He does not often despair. He doesn’t read into things or draw long dark conclusions. He lives within what is happening, and bears it as the thing that’s happening now.

I am so lucky that Ned is Nat’s father. He is so wise and seems to have infinite patience –with all of us. And he is very generous, offering me his shoulder to nap against.

Saturday, June 20, 2015

Grief Renewed

I didn’t get to just stick my toe into this river of pain, and test its temperature. No, I fell in, completely, Thursday afternoon, June 18, when our doctor told us that she thinks Nat has catatonia. It was a cruel flashback to 1993 when Nat was first diagnosed with autism. This very same doctor was actually the first one to use that term for Nat. He was three.

Yesterday I was strong. I was simply going to learn about this condition of Nat’s. Right away. I was not my 30 year old self, caught in a hurricane of ignorance and fear. I was not going to be sad, I told people. What good would that do? I’m going to fight this, I’m going to become an expert in it just like I always have with anything else Nat has developed. But when you fall into that river, you can’t simply get out. And that’s where I am. Wet, cold, tired. It’s not a rational thing, pain. It just happens. Your child is sick, you’re sick. You can’t bear what he might be feeling. You are him, but you’re also not.

The evil quality of pain, other than pain itself, is the way you can be lulled into feeling that it is over. I guess as humans we are naturally optimistic — we’d have to be, reproduction is the most basic expression of optimism there is — so we believe that something bad passes. I wonder if this is actually an illusion, and that nothing is linear in our lives. But, silly me, I thought that we were full steam ahead into autism adulthood and that my main concerns now would be making sure Nat enjoyed his life — his job, his apartment, his activities in the evenings and weekends. It’s been a pleasure watching him move into adulthood with such ease. I look back now and I see that it has gone really smoothly, even with all the housing tsuris. He has always had people around him who love him and also really like him, and he just thrives in that kind of light.
But something evil has crept into his neurons. His long curly clumped glorious neurons, that have always grown the way they wanted to, not according to the typical. As I type this, my chest tightens and the tears start again. My eyes already burn and are gray around the sockets. So much crying, in just two days of being on the island of Catatonia. I’m scared.

Nat caught me crying. I was upstairs, coming out of the bathroom, blowing my nose. His eyes locked on mine. I still have never seen eyes like his, so richly blue, so clear. He’s all right there in his eyes. Wild, innocent, knowing, not knowing. He makes eye contact better than any neurotypical person I know.

He grew very quiet, watching my tears. He knows me so well. He knows everything. He must know that he is experiencing something new and awful, and he can’t control it. He may even know that he is annoying at times but he can’t stop the spitting and laughing. His arms lock at his sides when he’s giggling uncontrollably, his head jerks downward as if he he trying to hold himself still.

His sweet Disney eyes tickle my heart, making it bloom again. There’s always more. My desire to wrap him in my arms propels me forward. “Nat,” I whisper, “Can I have a kiss?” As always, he turns his cheek towards me. I kiss him but it’s not enough. “Please, Darling, I need a hug.” I don’t know how hugs feel to him but I just. Can’t. Think. About. That. Now. I need it. And he stands and lets me hug him. I rest my head against his chest and I hear his heart skipping along like a little kid in the street. But then, to my surprise, he puts his arms around me and just stands there. He bears my weight on him. He does not pull away.


Friday, June 19, 2015

Catatonia and Autism

A few weeks ago, at Special Olympics State Games for Massachusetts, Nat’s team began their relay. At either side of the pool stood teammates waiting to jump in for their turn.

Nat was third. As the second swimmer approached, he stood alert, waiting. When it was time, his body curved into an arch, ready to dive.

He stood their, poised over the lip of the pool, not moving.

“Nat, go!” I yelled.
I yelled again. And again. I tried to walk closer to where he was standing, but I was blocked by a lot of people and a wall. Ned joined in, shouting at Nat, trying to get his attention. We screamed ourselves hoarse. “He has a different coach over there,” said Ned. “She doesn’t know to tell him to get in the water.” My anger shot way up. Why would they do that? What’s with that, a different coach!?

“NAT! GET IN!” I willed him to get the f*** in that pool. This was SOMA State Games, Nat’s favorite day of the year. Why wouldn’t he move?

Finally, after what seemed like hours, and after the race was long over, Nat went in. He swam great. Everyone in the stadium clapped. This is Special Olympics after all, and every single person there knew this could have been their kid. And every single one of them was thinking, Great! He finished!

But this was not over. No, because this kind of thing had been happening since perhaps November. Nat would come home as if in a daze. No smiles, not stimming, no pacing. No self-talk. Just standing or sitting very still, hands slightly out in front of him, his lips drawn tightly over his teeth as if someone had said, “Nat! Close your mouth!”

So for months I had been worrying that someone somewhere was being mean to him, abusive, and his spirit was being crushed. I kept asking him, “Is someone being bad to Nat? Are you hurt? Do you like your job?” Peppering him with all sorts of useless questions, just indulging my panic. Nat can’t usually answer those sort of questions accurately. I don’t know where the sentences I shoot at him go, I imagine lances falling impotently as they hit his Kryptonite skull. Except Nat is the good guy.

I’ve been a mess. Never consistent as a mom, never the kind of mom recommended by 4 out of 5 autism specialists. I’ve been doing everything: coddling him, prodding him, prompting him, leaving him alone, giving him space, nagging him, and just worrying out of my mind about Quiet Nat. Everyone has been noticing. His caregiver (of course). The Day Program. My parents, my sister. He was this way even with them, his favorite people. And at the ice cream store. Quickly and stolidly eating his ice cream, but no joy. No one could get a smile out of him, ever. He just kept standing there, so still, so frozen.

And intermittently, he would be extremely giddy, giggly, almost out of control to the point where when laughed, spit would fly out of his mouth. “There’s no middle ground,” a job coach wrote in his notebook to us.

What was it? Seizures? Depression? Bipolar? Abuse? But if abuse, why would he be able to laugh at other times? And willingly go back to his routines of living with his caregiver and going to his day program? And anyway, there was really no way I could actually believe that he was being abused by any of these caring people in his life. Even though I explored this as best as I could.

Off to the doctors. Several different specialists later, we went to our neurologist of 22 years. She watched a brief video Ned had taken of Quiet Nat, and she said, “this is not seizures. This is not depression. This looks like catatonia to me.”

What was that? “Catatonia. This is a small subtype of autism. It means he freezes up. He can’t move forward. Can’t do the simplest things at the moment he’s experiencing it.”

“What do we do?”

Unfortunately, she did not know much about it, but there were two specialists in the country who did. One was in New York.

That night I wrote to and talked to various expert parents I know, who gave me an idea of the treatment: an Ativan-type of drug. One friend even told me two tablets of Curcumin, from the Turmeric family. Curcumin has been thought to prevent Altzheimer’s, though I don’t know if there are actually peer-reviewed, double-blind studies. But Ativan is a drug a lot of people know about, so I am not afraid of it.

We have an appointment with the New York specialist on July 2. Stay tuned for more.


Wednesday, June 17, 2015

Autism Never Justifies Murder

I’m really concerned with the trend in the media to report the murder of autistic people with a tone that justifies these crimes. Of course the majority of autism parents do not kill their children. Thank God. But reporting these stories with this slant does not necessarily open up “discussion” or the marketplace of ideas. This kind of reporting separates focuses on the child’s autism and therefore pulls it out of the population as a significant factor in the crime. It is very much as if we would see headlines that might say, “Jew Indicted of Financial Crime.” or “Gay Teacher Preys on Students.” These very suggestions bother you, right? You’d never see them now. To suggest that the murder of an autistic child “underlines the strain in the family” is taking a stereotype and showing it in one particular bigoted light. This is nothing short of biased reporting, and it is very serious journalistic misconduct.  My credentials here? I graduated from the Annenberg School of Communication and I have been writing essays and articles — both personal and reported — for almost 20 years. In the Washington Post, Boston Globe, New York Times, and for affiliates of NPR.

As a journalist, I can affirm that there is no “angle” to the murder of a child — or an innocent adult. If the issue of the article is lack of funding and resources, then that is what the article should be about. If the article is to highlight a person’s struggle in life — let’s say someone who is homeless or chronically ill — you write about that. You can write about his desperation and his worst fantasies. But you must make it clear that they are his life, his thoughts and that the newspaper does not connect such feelings to justification of crime. Journalism 101: you describe something as neutrally as possible. You interview those affected by this event. You interview those in charge and try to discover why they believe this happened — on as many sides as possible. If this is a trend of alleged or proven murder, you must report it in those terms.

And so if you are reporting a crime, a murder of a child, you might report that the murderer stated that he felt he could not “handle the child because of ____” but you then follow up by talking about how he will be charged because he is the alleged perpetrator or a crime. Maybe you will report how there may be an upward trend of parents murdering children for various reasons. How the autism community is holding vigils for such heinous actions, how other organizations are putting up billboards to inform parents of where they can get help. Perhaps there would be a bullet list of resources for if you are at the end of your rope. Samaritans, Suicide Hotline, Society for the Prevention of Cruelty To Children.

Those are the kinds of angles for stories like this one, not the particular, singular challenge of autism.

The murderer may believe what he wants to believe. But to take his side, even subtly and then in the same article write about the hardships of autism with a tone of objectivity is a dangerous and false form of journalism. Call it an oped, an opinion piece, where your credentials must be established in the byline, where your personal biases are noted.

My angle in this blog post is as a journalist. But my heart in this blog is as a mother of an autistic young man, and it is pierced through by what has happened to this poor 20 year old man in Michigan, the latest victim of a crime that is not at all justified and shame on the reporters who abase themselves with this sort of slanted writing.

Yes, I judge the reporter. And yes, if this father is proven to be the killer, then yes, I judge him, too. Guilty of murder. Leave autism the fuck out of it.

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