Sunday, October 30, 2016

Is An Obsession Always a Bad Thing?

Ever notice how judgment of behavior varies between those who are perceived as neurologically typical (NT) and those who are not? The choir director at a church where I once sang, had a son who was totally attracted to drums from a very young age. When he was eighteen months old, his mother had to hold on to him tightly, because every time she let him loose, he would run to the church drum set. Now if he had been diagnosed as autistic, that would have been called perseveration. He might have been strongly urged toward another activity or at least emphatically chastened to leave things that didn't belong to him alone. By the time this particular child was eight, he played drums at least as well as most adult drummers and could fill in with the adult church band. What might have been called perseveration in a child with autism, was perseverance in an NT, something to be lauded and celebrated.

So where do you draw the line, and about what do you draw it? Can one be a truly excellent musician without spending every available moment practicing? Is it terrible to believe in a place for everything and everything in its place? Is it wrong to want to spend every waking hour in front of a computer? Is it bad to pursue an interest that fascinates you but bewilders your parents?

The answer is not a matter of diagnosis. The difference between perseverance and perseveration is whether it interferes with the quality of your life or enriches it, whether or not you have a label. To pursue music, art, or even cleanliness with a passion and end up with a successful career, is a good thing. To obsess over Fermat's Last Theorem until you prove it and win a Fields Prize, is a good thing. To obsess over the perfect cookie and end up with millions in sales is a good thing. To obsess over a computer to the point where you teach yourself to type, even if you can't talk, is a good thing. To obsess over the treatment of cattle until you become one of the world's leading experts is a good thing.

If you can't leave the house in the morning because you are afraid your toy cars might not be lined up just right, it is not a good thing. If you can't eat in restaurant unless you get the one table where you're willing to sit, it's not a good thing. If your food preferences limit your diet to the point where you become malnourished, it is not a good thing. If you are so obsessed with your appearance that you have to get up three hours early to get your hair and makeup right, it is not a good thing. If you insist on picking your friends depending on whether they agree with your taste in music, or cheer for the same team, it may not be a good thing.

One of the criteria for diagnosing autism is narrow interests, but it certainly does not tell the whole story. In the first of the set of paragraphs above, there are people who have been diagnosed with autism and some who have not. You could probably think of a name or two. In the second there are some who would be diagnosed with autism or OCD, or both, and those who would not.

Some with autism have savant skills in music, art, math, computers, or other bents that may be more off the wall. Sometimes parents latch on to those as a hope for a good life for their son or daughter. Sometimes it works out. Sometimes it doesn't. Savant skills and the obsessions that can accompany them can be positive, but not in a vacuum. Everyone requires at least a few living skills too. A form of communication is essential, whether verbal or by some other means. If a person can write a symphony but not make their basic needs understood, they are not going to have a great life. Similarly, an artist who can detect the tiniest detail in an object and reproduce it, but is painfully overcome with sensory bombardment, will live in constant agony. The skill, the obsession, can be great, but the failure to look at the other aspects necessary for a comfortable existence, can be a disaster.

A person, with or without autism, is a whole being with many facets. Characteristics, whether valued by the world at large or not, must be evaluated on the basis of whether they make a contribution to a complete and fulfilling life.

Wednesday, October 19, 2016

Combating Ignorance

Mark Twain said, "It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so." Nowhere have his words been truer than in the history of autism. First it was assumed that autism was the fault of the parents, specifically the mother. This went on for decades. Families were torn apart, children were tossed into institutions under the theory they'd be better in their parents' absent. There were two things that were particularly odious about that situation. One was that there was no evidence for it, but professionals just accepted it as true. The other was that a particular so-called expert named Bruno Bettelheim perpetrated it, primarily by writing a book called The Empty Fortress.

Bettelheim was not only mistaken, he was a fraud. He claimed to have a doctorate in psychology. He did not. His doctorate was in art history, and even that was eventually rescinded. Did the profession check him out? No. His word taken as gospel and disseminated to the general public through talk shows such as Dick Cavett. In 1964, Bernard Rimland published Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, proposing that autism was physiological, not the result of anything parents did. He fingered the limbic system in the brain, which was incorrect, but his basic theory was true and there was much evidence for it. But in the eighties when my kids were being diagnosed, I was still being asked if I was worried about having money to raise my kids when I was pregnant, or resented them in some way. Some psychology professionals were still going with the psychological state of the mother as a cause. In the nineties, Bruno Bettelheim was still appearing on Good Morning America. Even though neurological symptoms had been clearly associated with autism, it took a long time for the truth to penetrate. In all that time, many professionals who were supposed to be helping those with autism and their families, were still contributing to their misery.

Well, we know better now. Do we? In 1989 a study came out declaring the revolutionary idea that children with autism really do love their parents. Well duh! This year one came out saying the same thing. Really? In decades, no one was paying attention to what had already been learned. I remember watching my younger son use a plastic sword and big rubber gloves from under the sink to play Don Quixote, after seeing Scott Bakula play him on Quantum Leap. The problem was, that at the time, the experts had proclaimed that autistic children don't indulge in imaginative play. Uh huh.

So what do they say today? In many cases it is that kids must be hurt to alter their behavior for their own good. We've been there before too. In the eighties interventions based on Skinner's pigeons were riding high. Then people died. There was a backlash, with many forms of aversives banned in some states. Non-abusive interventions were found, like those outlined by John McGee in Gentle Teaching, or social stories, or sensory treatments by physical therapists. Some of these worked to some extent, or not, depending on the person being treated, but at least they did no harm.

But now it's back to the future. Things that were long ago established as unacceptable are acceptable again. Why? Money. There's gold in them thar hills. Parents of children with autism are now, and have always been, desperate not only to help their kids, but to make their own lives easier. They are fair game for any promise, proven or not. Schools unwilling to allocate sufficient resources search for cheap and easy solutions, whether they are proven or not. Those solutions also include medicating a large percentage of students, even if such medication has not been shown to affect long tern academic or social success. A pill is so much easier than a well executed plan suited to the unique needs of a child. Over time medications rise and fall in popularity as dangerous side effects, such as obesity, diabetes, and tardive dyskinesia(involuntary movement) are discovered. But there's always a new one, or an old one re-purposed as a new one. The drug companies rake in the profits and kids may suffer permanent damage.

So what's a parent to do? Some of you will hate to hear this. The buck stops with you, not with a teacher, school, doctor, therapist, or case manager. The first thing you have to do is develop a healthy skepticism for all of those folks, plus the popular press. If someone suggests a drug, research it. Find the scientific studies and by that I mean those with large samples and double blinds. If they don't exist, your child is a guinea pig. That may be what you want, but at least you'll be making an informed decision. If you don't speak science, find someone who does to translate for you. If you decide to go with something, keep up on it. New studies come out about efficacy and side effects. There is no shame in changing your mind when better evidence comes in. If your school isn't doing its job, call an IEP meeting. If that doesn't work, request a hearing. Better still, band with a group of parents facing the same problem. Districts only have the budget for a certain number of fights. If they get bombarded, they can and do give in.

Also remember, usually some symptoms get better, but autism doesn't end with childhood. If your sons and daughters grow up to be independent, if weird, be very grateful. But chances are very good that they will not. They will need support, and you are the one who will care the most about seeing that they get it. So take care of yourselves too. It is very likely that you are running a marathon, not a sprint. Don't exhaust all your energy out of the starting gate. You'll need it later. And never become complacent.

Saturday, October 15, 2016

When Only One Spot Will Do

When Only One Spot Will Do

Today I was sitting in Wendy's with my husband and my son DC. We were in chairs by the big screen in the back, rather than at a table. Every six months or so, DC decides on a different restaurant for our Saturday afternoon luncheon outings. Even though they are more expensive, conventional restaurants are easier, because DC will sit at whatever table the host or hostess picks. With more affordable fast food, whatever table we sit at the first time, becomes the only table he'll sit at during subsequent visits. He's also always refused to let us even order, until we were at his desired venue. If someone else is sitting there, we have to wait until it's clear.

When he was younger the wait could be painful --- literally. As he grew increasingly frustrated, DC would pinch or bite, usually me, but occasionally my husband. He would also protest constantly and we worked hard getting him to keep to an inside voice. Now, at thirty-five, we still have to urge him to keep his voice down and not to point or loom, but he no longer tries to hurt my husband or me.

Usually a wait for DC's table would only be a few minutes, until someone finished a meal. Unfortunately today, the occupants weren't eating. They had drinks, but were engaged in conversation, with no sign of when they would leave. As DC grew more and more upset, I began to think they would be there forever, but after an extremely long forty minutes, they finally took their leave.

Once we'd received our order, both DC and I were both calmer. And after lunch, full tummies made life downright rosy again. But even though it will cost us, I'm hoping that DC will decide on a new restaurant soon, one where someone else picks the table.

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Sunday, October 9, 2016

Be Careful What They Watch

I have two sons with autism, JJ and DC. JJ is very high functioning and independent. DC is not. When they were young, my husband and I coped with childcare by working different shifts. Since I was more of a night owl, I worked evening until early morning and my husband worked early morning until mid afternoon. We all had an early dinner together in-between.

VCR's were new at the time. My husband and I had plunked down five hundred dollars for one which my husband used to tape a few of my favorite TV shows while I was at work. One of those was the original MacGyver. While I eventually found myself screaming at the screen when I detected science flubs, I loved it, and watched some episodes over and over, rewinding my favorite parts. (Yes I know, very ASD behavior.) DC watched with me, enjoying the repetition as well.

Unlike what's on a DVR, you can keep video tapes pretty much forever, and I kept mine. Years later I still watched some of them and DC still watched with me. JJ was in high school and I held two part time chemist jobs, one in the morning and one in the afternoon. I was able to do so because I had found an after school program for DC, which used the facilities of a church across town. I picked him up in the late afternoon every weekday.

DC loved to throw things out of car windows, but the car I normally drove had windows that locked from the driver's seat, frustrating his efforts. Then for a week, my car was in the shop and I was driving a loaner with manual windows. DC had thrown his shoes and anything else he could get his hands on out of the windows until I locked just about everything except minimal clothing in the trunk. I had almost made it home from DC's program when I looked back and realized DC was no longer in the back seat. An angel on my shoulder kept me from sharply hitting the brakes. I slowed down gently, pulled over, and got out of the car.

Unable to toss anything out the window, my son had crawled out himself, and like an episode of MacGyver was on the roof, making his way toward the hood of the car. I got him down, put him back in the car, explained as best I could that he was not MacGyver and could have been hurt. I got him home without further incident. Thankfully, the next day I got my own car back. After that I was much more careful about what DC watched.

Saturday, October 1, 2016

The Day I Made Lemon Chicken for Oliver Sacks

It all started when I was sitting with the late Wayne Gilpin and the rest of the then board of the Autism Society of America in the Banyan Tree. It was 1993. At the time, I was the president of ASA and Wayne was treasurer. We had run against each other for president and he had been surprised and a little ticked off at losing. To get him to agree to be treasurer, I had to make a deal that he'd be in charge of the international conference in Toronto. The bar we all sat in was in the hotel that housed it.

Neither Wayne nor I was interested in drinking, so we talked to each other. A presenter had just pulled out of the conference and I made a proposal to be a fill-in. I would talk about my family: The Autism Family. We had an empty session and Wayne had nothing to lose, so he agreed.

I wrote that night until one A.M., filling page after page of a legal pad with my presentation. Only slightly bleary, I presented it the next morning. I told the room about my two sons at very different functioning levels. There wasn't much news in that. Then I dropped the bomb. In the late '80”s Edward Ritvo, then the head of the Neuropsychiatric Institute at UCLA, wrote a letter to an Autism Journal, outlining ten anonymous high functioning adult phenotypes of autism. Two of those ten were my husband and me. Even though the fact was known to members of my local autism community, especially since Dr. Ritvo referred other high functioning adults to me, it had never been announced to the world at large. Both my husband and I had careers that might have been adversely affected. Most people still saw autism in terms of Dustin Hoffman's portrayal in Rainman. It wouldn't have done our health insurance any good either. So when I let the news out, I did it outside the country.

The room where I did my presentation was packed. I gave, among other things, my personal experience with what stimming felt like, and tricks I used to appear as normal as possible in public. I found out later that there were people from thirty-eight countries present. At the end, a woman came up with tears in her eyes, to thank me. The audio tape was the second best seller at the conference, with only that of a well known person with autism ahead of it. It was also referenced by the keynote speaker at the plenary session. He had listened to it before he presented his own talk.

Sometime after I'd returned to where I lived in California, I got a call at the metal finishing plant where I was working as chemist and Q.C. manager. It was a representative for Oliver Sacks. I was told that the woman who had approached me after my presentation was Mira Rothenberg, author of Children with Emerald Eyes and pioneer in the treatment of children with autism and schizophrenia. She and Dr. Sacks were friends and she had convinced him that he needed to meet with our family for a new book he was writing. I was all for meeting someone on whom a Robin Williams movie was based, so I agreed.

Dr. Sacks arrived to see our family later than planned, getting caught in California traffic. He was charmingly apologetic. He also brought several of his books, which he autographed and gave to me. Insisting we call him “Oliver,” he spent the day. I made hamburgers for lunch and lemon chicken for supper. He was fascinated by the process, accompanying my higher functioning older son to the backyard to pick a fresh lemon I had requested. He confessed that his custom was to have someone cook him a pot of bouillabaisse, to last the week. He hadn't expected to like the chicken, cutting himself a small piece from his portion on the serving plate, then later eating the whole thing.

The one thing that stands out most in my memory, was watching him stare at my lower functioning younger son, typing rapidly at a computer completely by touch, a skill he had taught himself. He exclaimed, “What a strange creature!”
If anyone else had said something like that, I would have asked them to leave my house. In his case, I didn't get mad, because it was merely an astonished observation.

Dr. Sacks took off after supper. His next stop was to be to see Temple Grandin in Colorado. Temple and I knew each other because we'd worked together on the National Board. Oliver gave her a tape of my presentation in Canada, and after she listened to it, she called me. We talked for a long time.

Oliver had asked if it was all right to use our family's name or if we wanted him to disguise us. He even offered to put us in another state. I told him that California would be fine, but asked that he change our name.

As it turned out, we, as “Family B,” got a paragraph. Temple got the rest of the chapter. Even so, from Oliver's description of our home, every one from the local ASA chapter who'd ever come to our house for meetings, knew it was us anyway. I didn't mind. They weren't the ones I was concerned with fooling. When the book came out, Oliver sent me an autographed copy, which I still treasure.

The most wonderful thing that came out of Dr. Sacks' visit was that for a while we became pen pals. He wrote on a real typewriter with a ribbon that badly needed changing, but his letters were well worth reading. At the time, the neurotransmitter focus in autism was on dopamine and serotonin. Because of my younger son's extreme sensitivity to monosodium glutamate (MSG), I suggested that medications involving the glutamate system might be more helpful. Oliver was very encouraging when I proposed my theory. It was a joy and a relief to have his attention. In the end, at least where my son was concerned, I proved to be correct. Glutamate protective substances greatly improve his behavior. That day with Oliver Sacks, and our correspondence afterward, helped to improve my son's life and mine. I will always be grateful.

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