Susan's Blog

Sunday, October 30, 2005

The Fascism of Carbs

I am in a miserable minority. My group is not protected by any Constitutions anywhere, as far as I know. We are reviled everywhere we go, and recent events have even caused us to fear for our very survival.

It is not what you think. It is about diet: I am a low-carb person living in a low-calorie world.

I attempted to change because of the fascism of carbohydrate-eaters everywhere. I loved my Atkins regimen that kept me slim while I ate what I wanted – albeit from the inferior tiers of the food pyramid. But that did not matter to those around me. Ever since I started this low-carb eating plan, I have encountered criticism. Armchair nutritionists who would not let me eat my breadless sandwiches in peace, a husband who has said that I “eat like a freak” because I reach for the turkey breast or tofu when I’m hungry. And then came the studies that sent me into hiding with my almonds and shrimp! Even though the actual findings were not so bad: bad breath! Excreted calcium! Haven’t people heard of calcium supplements and mouthwash? And then I heard that Atkins was bankrupt.

So I gave in. I changed over to low-cal, saying a tearful goodbye to my Advantage Bars.

It wasn’t all bad. First thing I did was to dive into a loaf of French bread – 20 carbs a slice, but who cared? I reacquainted myself with corn, fruit, milk and yogurt, always carefully counting calories. But it was harder counting up to 1400 calories than 30 carbohydrate grams a day. No matter; I stayed within the recommended calorie range. I followed the health magazines’ instructions with the zeal of a new convert. I reveled in being so in vogue, one of those who ate everything, but “sensibly.” Not like those freakish low-carb fanatics.

But I secretly thought of nothing but food for the entire time. My beloved cheese, my nuts, now so restricted due to high caloric content! My Splenda-laced chocolate that I had grown to love, gone the way of my daily soy burger. I found myself in a carbohydrate haze, blood sugar up, then crashing. I kept zoning out of conversations, wondering what else I could eat, how much, when could I eat again, trying to remember my calorie count. By the end of this period, my weight was up, I was always hungry, and my head was spinning. Calorie-counting was making me food-obsessed.

I went back. I heeded the call of my inner Atkins. Furtively, shamefaced, at first. No one likes a successful dieter, especially when the answer is something as elementally counterintuitive like eating protein and some fat, limiting fruit! I believe low-calorie eating is healthier, but it wasn’t me. It makes me crazy. I can’t maintain it. I am on Atkins for life, and it is like a life sentence.

So the answer for me in this carb-heavy world is to remain steadfastly low-carb, but alone, far from the ample, secure support of Weight Watchers and Jenny Craig, those portion-control carbivores. I am still able to find my beloved chocolate peanut butter Atkins bars, too. But I will keep my dietarily backward eating habits to myself, kind of a “Don’t crash, don’t tell” mentality. And remember my mouthwash.

Spooky Cake Hand

Benji kept asking me to make a special dessert for Halloween. After checking numerous cookbooks and even searching the web for ideas, we came up with the spooky hand idea ourselves. All it takes is:

  • Reeses peanut butter wafer sticks
  • vanilla frosting
  • green food coloring
  • Milk Duds
  • red gummies
  • Two Hostess Twinkies

Max cut up the peanut butter sticks into appropriate finger sizes. I cut a Twinkie in half for the hand, and cut the ends off another for the severed wrist. Nat colored the frosting green, and then we frosted the whole mess. I drew knuckles with a sharp knife, cleaning the point after every mark. Max then places Milk Duds for the fingernails, and then I ripped up some red gummies for the blood drops!

Autism and Happiness

Recently a friend with a young austistic child asked a simple but poignant question:

Is happiness really possible with autism around?

I just got back from the pool, watching Nat get anxious and try to hurt his dad, who was not fazed. Ned just made him get in the water and do his laps. “Put your face in!” He yelled. Nat put his face in. At the end of it, we clapped. Business as usual. I got to thinking how good we’ve gotten at this system, whereby we take Nat to things and get him to do what we need him to do, wrestling with his behaviors and his neurological discomforts and his impaired communication until we get to the eager but anxious boy inside.

I find I like plumbing the depths of Nat’s mind, trying to figure out what he wants and how to get him to relay it to me. Trying to keep him on my side. I like reading people, and Nat is the War and Peace of people; he is extremely complicated, and extremely simple and straightforward at the same time. He is pure Id, as well as being a complex person. You know what he’s thinking sometimes and other times, it is anyone’s guess. Why does he laugh when his little brother is mad? Is it nervousness? Is it a mixed up response? Is it just normal brotherly sadism? Each time, I try to assess the situation and act according to my best guess, instead of rotely trying to discourage the “behavior.” Sometimes I want to laugh, too, for all of the above. Humans are strange creatures, neurologically typical or not.

What I am getting at is that it really is possible to be happy and comfortable with autism around. It is about understanding what makes you happy, and about looking around at your actual life and teasing apart what is good, and doing more of that. What has made me happy was to do more things together as a family, so in order to achieve this, I had to figure out how to help Nat do things with us more easily. I was not out to change him or stop the autism, just to accomplish my goal of having more of a together-family life. It took awhile to get him accustomed to doing things with us, like vacations and restaurants and movies. He is swimming right now, as I write this, with Ned. He plays games, he goes on walks with us, he goes on errands. So much that I never thought would be possible, is possible. The pain lessens. New challenges arise, and we meet them; he is still very autistic. My two other sons are typically developing, but still challenge me in their own ways. Max won’t leave the computer. Ben is easily angered, hard on people. I worry about them in different ways. We want everything for our children, but we don’t get that. That is life. It is messy, it takes unexpected turns. It is not a Hallmark card. But it really, truly, is a gift and our kids are the biggest gifts, even though difficult!

Friday, October 28, 2005

Giant Garbarge Bag Spider

I had a really busy week. I felt like a shitty mother. I had done nothing but book events and laundry. So when Benji reminded me that Halloween was coming right up (ulp!), I realized I ‘d better get started on decorating! Then I realized what I really wanted was to take a nap. But no, I couldn’t, I did not want to let Benji down. I thought for a while about what I could do that would be sufficiently Halloween-y and would not be too taxing on my limited energy.

We had been to a Halloween fair last week at our school, and in the “Spooky Space” there were two huge garbage bag spiders, made from big stuffed black plastic bags. So I thought, “Okay, spiders. Not too tough; just some black garbage bags and some cups for eyes.” I made it with Benj, and it is all lumpy and misshapen, but it is definitely arachnidean. The boys were delighted! Even though, if you look at it quickly, it looks like someone forgot to take out the trash. (If you look at me, you will see how tired I am! So only look at the spider).

Here’s how we did it. It took all of ten minutes:

Materials:

  • One big black leaf bag or two smaller ones
  • Something to stuff it with (I used recycled newspapers)
  • Two or three big red plastic cups for eyes
  • Eight black socks

Stuff the socks and the bag(s). Separating out a smaller section of the bag, tie it off and that is the head. Make small slits and wedge the cups in upside down into the head. Staple the socks onto the fatter part of the stuffed bag, on either side; this is the body. String spider web around it and — voila — there’s your spider!

CNN/Making Peace with Autism

I am going to be on CNN tomorrow (Saturday), sometime around or after 12:30 p.m. EST, talking about family life and autism, and my book.

Thursday, October 27, 2005

Autism and the School Board

I had an email question sent to me recently that I thought was an important one:

As a board of education member, and a parent of a child with autism, can you tell me what do these board members most need to hear? What can I say to help them understand the importance of programs such as ours?

First thing is to think politically. This is not meant disparagingly; it is a reality. The Board of Education or School Committee are a public body, probably volunteers, who probably believe that they are doing a great job, and who probably believe the school system is excellent, or they want it to be, so I always take that perspective into account when I say anything public to my colleagues on the School Committee. So, I would start with the positives. There are always positive things you can say, about the staff that work there, a particular strong point of the classroom, the setting, the services, the inclusiveness. In what ways, specifically, has the program done a good job? How has your (or other children) progressed within that program?

Then you can say something like, “Of course, in this world, nothing is perfect,” maybe even smile at them, and then, “So I have a few observations and suggestions for you.” Or, before you get to that, you can give a few stunning examples of the extremes that you deal with having a child on the spectrum. If you do a negative story, do a positive one, too. It is a way of engaging the audience and keeping them on your side.

It also may help to have a one-pager fact sheet for them to follow along. If you want to emphasize the difficulties particular to ASD, use a few bullet point facts, like how the Federal General Accounting Office recommends early intervention, social skill-building, etc. (you might want to look that up, but there was a GAO report last year on autism). You might talk about the numbers of kids served in your town’s program, and how they are progressing.

If you are personable, factual, as positive as possible while still being honest, and engaging, you will have automatic credibility, and that’s most of the battle right there.

Wednesday, October 26, 2005

The Autism Divide

I have become fascinated with the division in the autism community between those who believe there is a cure, and those who believe there is not. I feel sympathy for both viewpoints; I know people in both camps. Those who believe there is a cure tend also to believe to some degree that autism is the result of an injury, one that can be corrected. The injury can be “mercury poisoning,” or other toxins in the environment (vaccines in general, food additives). With the belief of the mercury injury comes the belief that if you treat the body and its now compromised immune system with a diet that detoxifies, (gluten-free, casein-free diet) and with other chemicals that draw poisonous metals out (chelation), you can either reduce successfully the symptoms of autism or reverse it entirely. There are some who believe autism can be reversed or reduced through other, more traditional autism approaches, such as Applied Behavioral Analysis, Floortime, and Son-Rise. What these people all have in common is the belief that autism is something to reduce, change, stamp out, or cure.

Those who do not believe that autism is something to cure usually see autism only as a kind of atypical neurological wiring. They see autism as genetic and neurologically based, something you live with, something that adds variety to the world. Something that gave us brains like Einstein. They believe that autism is a way of being, the symptoms of which should be ameliorated if possible (using various approaches that have existed for autism for some time, such as speech/language therapy, Applied Behavioral Analysis, or ABA, and Floortime, or DIR, for example). But this camp believes that ameliorating the symptoms of autism should be done strictly for the comfort of the person with autism, for allowing him to express himself better, to increase his ability to be happy. They feel that it is society who must change, who must become more tolerant of autistic behaviors and challenges that arise from being neurologically atypical. They see autism as another political minority, “neurodiversity,” that must be accommodated the same way modern society accommodates other disabilities and strives to include and give equal access to any other minority.

Many in these two camps feel that one group is a threat to the other. They feel that if you want to cure autism, if you see it as something that must be treated and cured, then you must not be able to accept the person with autism. They feel insulted by the “curebies” whom they say believe you can stamp autism out and should subject autistic people to all sorts of treatments, some of which may not be scientifically proven. They ask, “How can you give your child this message, that he is something fundamentally diseased, and must be changed?”

Those who believe in the cure see this faction as irresponsible; they ask, “How can you not try to help your child in any way you can? Why would you want him to be autistic?”

I am very frustrated with the two groups’ inability to see any good in the other. I understand so well on one hand why a parent would want to reduce their child’s autism, and it is NOT just because they are selfish and cannot see how wonderful the child is, autism and all. Behaviors that come with autism (as well as other conditions people seek to ameliorate), such as bolting, inexplicable tantrums, unpredictable aggression can wreak havoc in a family and be very hard on the child himself. As parents we must always try to give our children the tools to succeed in this very difficult world. We must, as a reality, take care of our other children and ourselves.

On the other hand I also understand how important it is to educate others in tolerance, accommodation, acceptance. We must consider the damage done to a child when he is constantly being “treated” for nearly every natural response he has to the world around him. To be able to accept our own and others’ limitations and still be happy is truly something to strive for. Both groups have something of value to say, whether you believe in mercury poisoning or not.

Bottom line is, both viewpoints spring from love of someone autistic. Both are trying to help autistic people live better lives, albeit from extremely different positions. One seeks to change what is inside the autistic person; the other seeks to change how the world treats the autistic person. Why not take the elements that are useful from one group’s beliefs and discard the rest?

Great Conference Coming Up!

This Friday and Saturday is the LADDERS Conference, at the Hilton in Dedham, MA. LADDERS is a wonderful organization that offers therapy and evaluations for kids on the autism spectrum and with other neurological issues. Dr. Margaret Bauman founded it and she is one of autism’s foremost experts; she diagnosed my own Natty. She and I were on the Today Weekend show together. Just wanted to put in a plug for the folks at LADDERS who do such great work!

Tuesday, October 25, 2005

When Autism Hits Home

This came my way via a friend who is connected with the ARC of Illinois, who ran this in their newsletter. Thanks, Kim!

ELITE Magazine

A Sun-Times News Group publication
November, 2005
When Autism Hits Home

By Robert Hughes

The term “autism,” a new one for me, was in bold print, but this wasn’t enough to catch my eye. My eye was hard to catch at 1 a.m. that morning in 1970 as I read my college Introduction to Psychology text for the first time before the final exam. It was a struggle just to stay awake.

What did manage to penetrate my skull, though, was the spooky photograph next to the word: a boy sat in a corner staring at the floor with his fingers in his ears. It reminded me of an old horror film, “The Village of the Damned,” in which the kids were scary space aliens menacing the nice adults.

Cool, I remember thinking.

The child was autistic, the text explained. That meant he had no speech, no interest in people, and rigid body posture. Like all the “auto-” words, autism meant “by oneself,” so the boy hated to be touched and lived in a world of his own. Autism was extremely rare and had no known cause or cure.

Freaky.

And that was it. The most interesting condition described in the book was covered in a couple of paragraphs.

Autism, the reality of it, hit me in 1988 with the force of a tsunami. That was the year that my 3-year-old son Walker was diagnosed with autism, and ever since there has been no corner of my life not immersed in it.

Autism affects every single thing the four of us do – Walker, my wife Ellen, our other son Dave, and I – when we sleep (if we sleep), what we eat, where we go, how we play. Autism limits and often twists our family relationships, our friendships, our plans for the future, our ability to navigate the worlds of work and school.

This shift in my life from autism-as-distant-ripple to tidal wave parallels autism’s larger journey in the medical world. What used to be considered a very rare condition is now known, according to the Centers for Disease Control, to affect 1 in 166 births. What was once an obscure but memorably haunting syndrome now makes the covers of Newsweek and Time and front-page stories in newspapers. Today nearly everyone is connected to it, not by six, but by just one or two degrees of separation.

The Autism Society of America estimates as many as 1.5 million Americans today have autism in some form and this number is rising at a shocking rate. Based on numbers from the U.S. Department of Education and other agencies, autism is growing 10 to 17 percent a year and could afflict 4 million Americans in the next ten years. Autism is four times more prevalent in boys than in girls, though it is no not restricted to any ethnic group or class or area of the globe.

Despite this stunning near-epidemic, there is still no agreed-upon cause or cure. So autism is described in terms of symptoms, not cellular activity. In Walker’s case, autism takes the form of limited speech: he can’t converse, can’t reliably answer yes or no, and most mysteriously, never points. He’s always moving: walks on tiptoe, bounces on his huge exercise ball, jumps in place.

He’s physically handsome, but his actions – index fingers in ears, laughter for no clear reason, shouting of odd words and phrases – always give his condition away. He can’t safely leave the house alone, can’t introduce himself, can’t play a game or – except at odd, wonderful moments – make a comment.

But just as with the neurologically normal, no two people with autism are alike. In fact, autistic traits vary so enormously that autism is described as a “spectrum” of disorders, from low functioning, like Walker, to high functioning, like authors Donna Williams and Temple Grandin.

In fact, high-functioning autism is present in attenuated form in the personalities of countless “normal” people. (Time magazine once had a sidebar comparing autistic traits with some eccentricities of Bill Gates.) This form is known as Asperger’s Syndrome, and my own understanding of Walker’s trouble has grown enormously because of the work of Tony Attwood, a leading psychologist in the field.

But to parents of low-functioning kids, Asperger’s Syndrome is what writer Ellen Pinkham calls “autism lite.” As emotionally and socially devastating as it can be, many Asperger’s people can nevertheless take classes, get married, and hold down jobs. If our son could suddenly make a phone call and walk to the store alone – well, it would be time for trumpets on the rooftop, dancing in the streets, and the Walker Hughes segment on “Prime Time Live.”

Despite failures to find cures, understanding of autism and medical hopefulness about it have grown greatly since Walker was first diagnosed. One tack has been behavioral therapies. Some of the better known are Lovaas, Applied Behavioral Analysis, Floor Time, the Denver Model, and Pivotal Response Training. Though according to a report in the New York Times last year, none of these methods is a “cure,” all rightfully claim some degree of success because of the love, enthusiasm and intelligent, intense interaction all these methods share.

Many parents try large doses of vitamins such as B6 and magnesium or special diets. Others have paid for healing touch therapy or had their child swim with dolphins, or ride horses. Parents report these methods can sometimes help with certain behaviors but do not address the underlying disability.

The other tack, and to Ellen and me, the more promising one, is neurological. Much autism work has shifted from the psychiatrists to the neurologists and genetic researchers. Autism is now known as a neurological problem, not a behavioral one, and the ultimate cure will doubtless come from brain research.

Dr. Michael Chez, a leading pediatric neurologist in the field, emphasizes how dangerous it can be for parents to focus only on the behavioral approaches. “If the brain is sick,” Chez says, “or biochemically malfunctioning, or having epileptic activity at night, therapy would certainly go better if medical intervention was done first or at least simultaneously.” Chez stresses that a sleep EEG to detect seizures in the night is an important first step. Cure Autism Now and Autism Speaks! are foundations that raise money for research such as Chez’s and are excellent sources for parents looking for solid medical information.

The popular perception of autism has changed over the years. Once it was blamed on “refrigerator mothers,” women who withheld affection from their children. Gradually – especially due to our understanding of the brain – that slur was put to rest.

But another myth, popularized by the film “Rain Man” in 1988 (the year of my son’s diagnosis!) persists. Now it was autistics themselves who became the “refrigerator people.” In that film the Dustin Hoffman character is portrayed as robotic, humorless, unemotional, uninterested in others, but possessed of a redeemingly nifty gift for numbers. My son, whose autism is more severe than this character’s, is loose-limbed, purposely funny, ultra-emotional, crazy about people, but nifty gifts, sadly, elude him.

Recently, a new theory has arrived, one I think of as Rain Man Redux. A much-publicized book, The Essential Difference, by Cambridge University psychologist Simon Baron-Cohen, claims that the one trait linking all people across the autistic spectrum is lack of empathy. Autistics have no “theory of mind” and cannot understand, and do not care about, what others are thinking.

However well-meaning and in some respects accurate this theory is, its main theme contradicts the experience of many who work with these children. Walker’s teachers at his school will testify to the emphatic empathy the kids exhibit daily. “They’re right here engaged with us,” says one of his teachers, Lauren Mucha.
“They’re not off on some planet of their own.”

I worry that this spurious perception of children with autism as uninterested in others, as cold to friendship, as uncaring and unemotional will impede the help they so desperately need. Though autism is the most widely diagnosed developmental disability in the country, Autism Speaks! founder Bob Wright notes that it receives only $15 million per year from private sources, compared to the more than $500 million for other childhood conditions like muscular dystrophy, cystic fibrosis and juvenile diabetes.

But who wants to help or befriend unlikable people?

Right now as I sit here typing on my laptop, Walker is doing his impression of that autistic boy I saw in the photograph back in 1970. He’s sitting in the corner of our dining room with his fingers in his ears, hunched over and staring at the floor. A retro-minded medical photographer could, I suppose, take a snapshot of the two of us and place a cut line underneath: “Autistic young man in typical posture. Autistic people live in a world of their own and are unable to connect with those around them, even family members.”

But a video of the scene would reveal something sharply different. The young man’s position is just a momentary break for a near-perpetual motion human being. He’s not sitting on a chair, after all, but on an exercise ball on which he bounces happily and eternally. (He’s burst seven so far this year.) He’s not silent but playfully needles his dad every few minutes with demands – for food (“SPAGHETTI CHEESE!”); for videos (“‘LOVE ACTUALLY!'”); for topics of conversation that I’m supposed to write down in the notebook that lies forever on the table next to him (“AT MALL WE EAT FRIES. LISTEN TO ALAN JACKSON IN CAR.”)

When I try to put him off, he comes over to me laughing with the notebook in his hand. He brings his face inches from mine, eyeball to eyeball in a comic, fake-dramatic sideways angle that gets me every time.

It’s all there, really. Love and humor and intelligence and fun – he somehow manages to hoist them all over the neurological wall he faces every day. He reminds me every minute that he’s a fellow working hard with what he’s got to reach the people in his life. He reminds everyone he comes in contact with that he’s a real live person in the room, somebody to get to know.

And he reminds all of us, with a force that takes the breath away: He’s a guy worth helping.

Robert Hughes is the author of Running With Walker, a Memoir.
More information is available at www.runningwithwalker.net

Note, especially, what he says about this “real, live person” who “takes his breath away.” Just beautiful. Just a dad. But an extraordinary one.

Tuesday, October 18, 2005

Autistic Email

Today I got this email, from my autistic son’s autistic friend.

Hi Susan,
Have a good birthday.
I like to eat cake.
Follow Directions.
Behave.
No being silly.

I love this new friend of his. He is a huge 18 year old, but like my teenager with autism, he doesn’t know he’s big. He is very gentle and sweet. He can talk a little, and he smiles all the time. He is like sunshine; he just makes you want to smile. He came over on Saturday and he and my son played Yahtzee. I would never have believed my son could play Yahtzee, (a game with dice that is a bit like poker in that you look for the same kinds of combinations of 4 of a kind or straights). and in fact he needed a lot of prompting, but he rolled through 6 rounds. The friend was very intent on his Yahtzee. He asked for a calculator and added up his dice each time.

After the Yahtzee, Nat wanted his friend to come and sit on the couch with him, but his friend did not want to. Nat had a tantrum, jumping up and down and yelling because his friend wanted to do something else. Very poignant, watching Nat deal for the first time with the age-old problem of having to do what your friend wants, and not what you want. Benji, my 7-year-old, deals with it all the time, and it is no easier. The other day when this happened to Benji, he said, “It’s time for him to go home.” Moments later, he did.

Birthday

Today is my 43d birthday. I thought it would feel a bit overshadowed by the stuff happening with the book. But it has been wonderful so far and it is only 7 a.m.! Last night Ned brought me cupcakes from our favorite cake bakery. This morning Max, Ben, and Ned hid tiny cards all over the house and I have been finding them. Max and Ben made a treasure hunt, and at the end there were bulbs Ben had bought me for planting! Max got me the new Dane Cook CD! Ned got me the new Neil Young, Bob Dylan’s No Direction Home, Ben Lee, and Amos Oz’s memoir. Nat gave me a cuddle!

Sunday, October 16, 2005

Adolescence without a Roadmap

Check out the Modern Love column in today’s NY Times Sunday Styles. It is written by Claire Scovell LaZebnik, the author of Overcoming Autism, about adolescence and autism — and love. Although personally my thing is more “making peace” with autism than “overcoming” it, (I have to admit that I am green with jealousy that Ms. LaZebnik got there first — I had sent Modern Love something a couple of months ago), it is a marvelously written, moving piece.

LaZebnik says, “Our son was a little boy with autism. Now he’s a teenager with autism — noticing girls.” I hear that. My son may notice girls, I don’t know. I know he notices breasts. He once saw a busty woman at our library and told my husband, “Want to pinch private parts at the Library.” To his credit, he did not — probably because Ned quickly placed himself in between Nat and the young woman.

What is more poignant? A teenage boy so hampered by neurology that he doesn’t realize what his body’s signals are? Or a teenage boy who knows what’s going on and completely fumbles at following through? Is it harder to be looking through the glass, unable to open the door, or harder to feel that there is something out there that is wonderful, and to be aware of missing out on something — but what?

Saturday, October 15, 2005

The Speed of Dark

Thanks to Jessamyn, I am reading Elizabeth Moon’s The Speed of Dark. So far I am finding it highly enjoyable because I am learning a lot about what it is like to be autistic, and it gives me an idea about what life might be like inside my autistic teenage son’s mind. It is a story set slightly in the future, when the 1 in 166 have grown up and many are high functioning enough to have jobs and live independently. The protagonist is Lou, who is very high functioning, and we are treated to his thought processes, much like The Curious Incident of the Dog in the Night-time, but even more “typical” and “normal.” We learn things from Lou, like the way “the real people” (neurologically typical) speak sloppily and imprecisely, rarely saying exactly what they mean. (A woman calls another character, Don, a “heel,” and Lou hates this because he knows she is simply angry at Don, so she should simply say that. A heel is a part of a shoe, after all.) Or the way “the real people” don’t see things in patterns or have the crushing need to bounce. His matter-of-fact acceptance of the autistic way of seeing gets us to see it that way, too, which is what I love about it.

Autistic people have to learn to live in the NT world so that they can have jobs, have friends, and be happy. So they need to learn how to express themselves, listen to others, guess at meanings, control disruptive behavior. They must learn “a time and a place for everything.” But they should NOT be learning that their ways are bad. Their ways are just different. The only bad aspects of autism are the parts that hurt others, or the person himself. But autistic thinking is another way of thinking and must be valued for its different perspective. NTs need to learn to accept autistic ways the way we accommodate any minority. Moon, whose teenage son has autism, presents us this simple fact of life — neurodiversity, the art of different wiring — and without hitting us over the head with it, shows how important acceptance is in order for all of us to be civilized.

Friday, October 14, 2005

Weather — Or Not

A Commentary on Autism and the Weather

New Englanders like to complain about the weather. This fall is no different, and with nearly two weeks of stormy, leaden skies, who can blame us. I think my son Nat feels worse about the weather than most of us, although he has never told me so. He can’t tell me, because he has severe autism. But I can tell how he feels, because I have learned to read his mood and his body language as expertly as I have learned to judge cloud patterns, breeze changes, and the look of impending snow.

I believe that the weather is behind Nat’s new nadir in behavior. After months, maybe years, of being able to take him places with me without fear, all has changed, in a heartbeat, a shift in the wind. Suddenly the family is under siege, unable to move forward, or do much, until it passes. All of my familiar interactions with him have become suffocated in anxiety, weakening my ability to connect with him. If I am afraid of being hit at any minute, I can hardly relax and smile lovingly at him.

Parenting Nat these sixteen years has never been easy. I have experienced his growing up as a series of wrenching shocks and breathtaking discoveries, and not as the familiar process I had been prepared for by Brazelton or Spock. From Nat I learned that playing with toys, or telling someone you’re sick is not something that all children do naturally. With autism, the so-called instinctual has to be taught. And he can only learn if he feels a strong connection with the teacher.

So what happens when the weather turns foul for days? When summer turns to slushy winter? Nat’s ability to learn diminishes, because he becomes more difficult, more scary, and people pull back from him. “Buy him an ultraviolet lamp,” my mother suggests. “Try more lights in the house.” “Change his diet: eliminate wheat and dairy,” urge friends whose children this has helped. Not mine. “Increase his medication,” says our doctor. I get a lot of advice, most of which I cannot use because it does not get at the heart of the problem which is that the vicissitudes of autism wear me down, plain and simple, just like a bad week in November.