I’m No Expert

When my experience with autism began in 1964, with the sudden inclusion of an eight-year-old autistic stepson in my life, autism was barely acknowledged in professional (medical and psychiatric) circles. It hadn’t been defined, and no one had a clue about what to do about it. Autism and all it meant to the “patient,” caretakers, and members of the research and treatment communities were like that early computer and the people who used it. Treatment was awkward, rudimentary, simple. The seeds of greater things to come resided only as dreams in the hearts of caretakers and professionals.

There were no special education classes (in public or private schools), devoted to children with needs other than those with physical handicaps and some mental disabilities. Children with emotional problems (The most likely cause of autism, at that time, was believed to be life with a cold, punitive mother, hence the child’s withdrawal from society in every way.), those children had no place to go, except a very few private “schools” that were enormously expensive; even their personnel had no real idea about how to help the clients.

Teachers had virtually no education or training in how to help autistic children. A few professionals offered comments, but rarely advice, to parents about how to help their children. The few who did advise were pessimistic, with no concrete directions or suggestions. Some of those professionals merely said, “Put your child in an institution and forget about them.”

We had no tools at all. No workbooks, flash cards, storybooks written and published with members of the autistic community in mind. No Kindles, tablets, IPods, special computers to enable communication for those who can neither talk nor write. No special toys, stuffed animals, games. No paradigms for techniques or programs that worked for some autistic children (and not for others).

Even so, Andy and I are proof that success is possible. He is no longer autistic. He’s a sixty-three year old retiree from a full time job, who lives independently, drives his own car, and is a vital and contributing member of his community. Did I say he has an AA in Commercial Art? Did I say that recently he told me when he collects Social Security he will be able to send me money to augment my Social Security Benefit that is less than his state pension?

*  *  *

For twelve years, I flew by the seat of my pants. Only rarely did I think concretely about what to do. When I did so, when I made a plan or started a practical method, I usually based it on what would work with me. My own history included sensations, behaviors, activities not unlike those experienced by autistic people. If nothing else, I had empathy, and I could apply practical techniques that had worked for me. Most of the way, however, I simply did what came naturally, what came next, without a thought for measureable efficacy or effect.

*  *  *

I sent a sample from the first draft of our book to Temple Grandin, doyen of advocacy for autistic people like herself. She responded almost instantaneously. She said,

“This book is terrible!”

“Why?” I asked.

“You must tell people what worked. All this other stuff, about early history and schools and such, is garbage. Take it out. People want to know what worked.”

I’ve reorganized the book, and included sections about “What Worked” in most chapters. But I didn’t leave out the “garbage.” I didn’t leave it out because of what I confirmed for myself as I wrote those “What Worked” segments.

Yes, Holding Therapy works for some autistic people, some of the time, but not for all autistic people all the time. Behavior Modification is the same way. Colorful flash cards work, if and when they are carefully designed to meet the specific needs of the autistic person’s situation and abilities. Appropriately selected and used technical wonders are wonders for many autistic people.

The single most important thing I could say, in every one of those “What Worked” segments, is that autistic people are no different from everyone else. They respond best to a person who cares about them, who is interested in them and their idiosyncrasies, who listens (to silence, if need be), who waits (for something, anything, that indicates a problem and a solution). In great part, most caretakers and parents who have a positive impact on their autistic child apply years and tears of enormous effort to arrange best situations and solutions to meet needs. They do battle with teachers, therapists, doctors, psychiatrists and psychologists, whole school systems—all in efforts to win appropriate treatment, education, and training. They believe, believe in, and practice the adage, “If you can’t go over, if you can’t go under, go around.” Again and again, every difficult step of the way.

That’s what I did. That’s what I know.

I don’t know what will work for you and your child/client/student. I cannot, and will not, recommend a particular doctor, school, tutor, or therapist. I cannot say which method of treatment will work best for you and your child. I cannot tell you which “authority” or specialist you must do battle with, or what avenues to take in that battle. I haven’t a clue about today’s educational methods or materials, or techie tools, to best help your child.

I can say only you must not stop, you cannot afford to cease or take a vacation from the effort. It is important that you have a support system, people who listen to you when the dam is breaking and you’re sure you cannot stop the flood. People who offer suggestions, but are still there for you if you do not follow them. Professional people you trust.

All of this does not mean your child, like Andy, will get an AA degree, drive their own car, have a real job, or retire with full benefits at age sixty-one. Most won’t. It does mean that the more you are connected with and empathetic to your child, that person will come closer (than not) to being the most they can be.

And that’s enough.

*  *  *

So, what I offer you is not directions or cures. I offer a shoulder to cry on, an ear to listen, feet that have walked the path, hands to applaud success, and a heart full of empathy.

I can let you know when our book is published, and where you can find it. At this point, we have a title we like, but almost always publishers have their own (marketing) ideas about titles, so I won’t reveal ours, now. I call it, The Andy Book.

And I just had a wonderful thought: If you have a story about What Worked, call or write to me and tell me about it. I’ll add a page to this website, for What Worked. I’m not the Autistic Society, with a regular newsletter and column for special results; this is simply another way for us all to help each other.

Speak to me!

Birds and Beasts

Every two months I receive my copy of the magazine, “Poets and Writers.” Sometimes I do not read every page/article. Often, I read only those of immediate relevance to me and my work. I always read the regular page that offers prompts for poets, writers of fiction and writers of nonfiction. The prompts intend to stimulate and inspire writers to write about the topic presented.

A recent prompt for writers of nonfiction is a suggestion to write about a pattern or routine observed in nature that applies to one’s own everyday habits.

At my desk, through the double sliding doors that open onto the patio, I watch what I call my zoo. The creatures I’ve watched for several years now are families of squirrels and rabbits and flocks of hummingbirds. Each group has its own distinct characteristics and persistent behaviors—behaviors that both astonish me and remind me of my own traits and habits.

The squirrels, rabbits and quail occupy the spaces under two adjacent and similarly trimmed bushes. Most of the year, virtually every time I lift my eyes from my work one or another group is out there, putting on a show designed, at least, to entertain me. I know they’re just going about their lives, as am I, working at my desk.

One of the two bushes serves as the incubator and bedroom of the “children,” as I call them. The other bush is occupied by the parents, who actually spend most of their time caring for their children. The squirrels, rabbits and quail share both bushes—children to my left and parents to the right.

In the spring, the parents arrive. For days, courting activities occupy most of their time. Next they make ready the children’s incubator. After gestation, the babies are born there, the quail first, followed by the rabbits and squirrels. For nearly a month, procuring food and feeding the children takes virtually every moment for the parents.

When the children are old enough, much activity is devoted to preparing them for their adult lives and activities. They go on expeditions to explore the nearby territory. I cannot see all of that territory, or what the parents do/say to tell the children what is done in each area. And still a great amount of time is focused on food, especially for the children.

Adolescent activities are especially delightful to watch. A pair of squirrels uses the entire area I can see as playground and gymnasium. They sit up and spar like boxers, push each other around, and run away to be chased and tagged by their partner. The rabbits hop and race all over the yard, each daring the other to overtake them.

When the time is right, the children simply disappear. The squirrel and rabbit parents clean their areas under the bushes. Before they do that, the quail parents spend several days obviously mourning the absence of their children before they clean up their space. The squirrels and rabbits have only one set of children, each season. The quail have at least one more brood of chicks before the end of summer.

I cannot hear what, if anything, the squirrels and rabbits say to each other, but I hear whole conversations by the quail. Their vocabulary ranges from the “What,” of courtship, and the “Who” of parenthood, to an accusatory “Where” when both Mom and Dad are each sure the other has misplaced the children who have actually left home to begin their lives as adults.

This spring, I observed new, never before seen by me, squirrel activities. Suddenly one afternoon, I espied what I thought was a dead squirrel, sprawled next to the incubator bush. I planned, when I came to a stopping point in my work, to call the maintenance department to come remove the body. But next time I looked out, the “dead” squirrel was nowhere in sight. After that, for more than a month, even during intense feeding activity, the squirrel appeared in mid-afternoon, tidied his couch, and lay down for a nap of about 20 minutes.

Usually, the napping squirrel disappeared when he was wide awake. But one day, to my astonishment and delight, he arose after his nap and bathed himself. Like a bathing cat, he licked all the parts he could reach. Then he licked his paw and used it to wash his face and head, including behind his ears. When he finished, he rejoined his mate in the task of feeding the children. I saw that only once, but—because all other behaviors occurred routinely—I am sure it happens regularly.

For the first time, sometime after their children had flown the coop and they themselves had departed, I observed the quail parents’ return with a group of nearly full-grown quail (I’m sure one of their broods). For three consecutive days, they all returned to the area. The parents herded the adolescents into the space under the incubator bush. They actually pushed one or two strays to go in. I’m sure they were telling the children that space was where they should raise their own families. One day, they also led the children on a tour of the adult bedroom.

The squirrels and rabbits have all disappeared, now. I don’t know where they go, but I’m sure, like human snowbirds from northern states, they must have winter hideaways somewhere.

==========

Like the inhabitants of my zoo, I am a creature of habit. Some observers equate my behaviors to similarity to those (others) among us who are defined as being on the Autistic Spectrum or sufferers of the Obsessive/Compulsive Disorder. I do not disagree with that allusion. After all, my behaviors and routines have not changed very much, if at all, since I can remember having them.

For example, I cannot begin a day, a writing session, or preparation of a meal without first tidying up my surround. Indeed, for most of such activities, I tidy up both before and after they’re accomplished.

Tidying up, what squirrels and rabbits do at the beginning and end of the season, is often for me easier than it is for most folks. I have a place for everything, and everything must, when not in use, be in its assigned place. When something not currently in use is somewhere out of place, I experience the same kind and amount of discomfort as one does when their shoes are on the wrong feet. In my old age, I’ve been able to relinquish some of this compulsion. Now, the result of tidying up is frequently a matter of making neat stacks of papers or lining up things on desk or kitchen counters, rather than returning each item to its assigned place.

All my life, I’ve also practiced a number of equally non-varying routines. Like tidying up, certain regular activities must be performed as routines. Morning preparations for the day have a certain order that I am unable to violate easily. Teeth first, washing face next, and so it goes. Evening preparations for the night also have a certain order. I’ve not come to these routines in a random manner. They are based on efficiency. It doesn’t pay to wash my face before I brush my teeth. Toothpaste cannot be trained to not dribble down my chin; if I’ve washed my face first, I will have to do it again. Likewise, there’s no point in parting my dry hair; that, too will have to be done again after I’ve washed it. As I’ve grown older, I tend to forget rationale and routine for many activities. I get pretty annoyed with myself for absentmindedness, for forgetting the routine and the reasons for it.

As for feeding and otherwise parenting children (and being a housewife), I can only say that meals were served regularly, by the clock. Laundry, cleaning, and grocery shopping were done on certain days. Each child had essentially the same bedroom décor and furnishings. (Each had their own basic color scheme.) When the children had all flown the coop and I was working at a regular, nine-to-five job, regularity was replaced by the pressures of time and necessity, but it took several years for me not to feel that same shoes-on-the-wrong-feet discomfort.

I’ll mention only in passing the whole issue of which sock and shoe to put on in what order. When I was in second grade, for days I was late for school. I was most definitely not dallying. I thought about and practiced all possible permutations of the order for socks and shoes, in order to determine how to save time. James Galbraith would have been proud of me and my careful research. Galbraith was the author of “Cheaper by the Dozen” and other books about his seminal investigations that led to time/motion efficiency theories and practices. My own early work pre-dated my knowledge of his efforts. (Contact me if you want to know the result of my socks-and-shoes research!)

There’s more, but you must by now see that there’s plenty of evidence to support the idea that living life with a certain amount of regularity and routine makes really good sense. I believe need for and a certain amount of practiced routine is innate. There’s a reason animals build nests before their offspring are delivered. Tidying up has a practical effect for efficiency. Children must be fed, for growth at least. Maybe the order of putting on and tying socks and shoes doesn’t really matter, but the idea of efficient application of task and time taken is basically sound.

There are those who manage to survive until old age brings forgetfulness as a routine practice. Animals persist in training their young to follow specific routines for almost all situations they will encounter. It’s possible to consider those humans who live life as a series of random events in a chaotic surround were never trained. On the other hand, I “trained” three children to live as though their lives depended on routines, but only one of them has evolved to a form of tidy and regular life.

Thus continues the battle between believers of heredity and believers of environment as paramount in how we behave. I’m not convinced, either way, but I’m convinced that I was born the way I am. And there I rest my case.

==========

At the beginning of this blog, I mentioned hummingbirds. That’s another blog.

 

Review: “Grendel,” by John Gardner (1971)

“Tastes like milk,” said my mother-in-law of John Gardner’s Jason and Medeia, and I realized that she was, as I am, a synesthete, able to experience sensations in unexpected ways, like hearing colors or seeing smells. It is a relatively rare, and very pleasurable, talent.

Grendel, by John Gardner, doesn’t taste at all like milk. It is far more potent in its poetry, like a hunter’s kettle roiling atop broken tree limbs, filled with the remnants of several days in the woods: body parts, meat and bones, dried blood, wild berries, mushrooms, and pungent spicy leaves. 

It is also orchestral music, rising and falling in multiple movements, occasionally punctuated with puns and sudden childlike outbursts. Grendel tells his own story in fragments, an ongoing threnody insinuated beneath and between the details of the familiar Beowolf legend. He emerges from and retreats to the cave where his mother still lives in a stuporous haze, visits a pontificating dragon whose ultimate words of wisdom, after almost twenty pages, are “seek out gold and sit on it,” and observes and makes raids upon the local Danes until a stranger comes across the sea with a challenge for him alone. 

I first picked up a copy of Grendel in a bookstore a number of years ago, but did not buy it at that time. I put it on my list of “Books to Read Soon.” A couple of months ago, I finally got a copy; I read it straight through. I was so enthralled I sent an e-mail to six friends, recommending it as a delightful read. Two of them quickly replied saying that they, too, had recently read and very much enjoyed the book! Go thou and do likewise. You won’t be sorry!

You Cannot Help Doing Your Best

When my developmentally disabled stepson Andy reached ten years old, we felt we needed a professional evaluation of his potential. Our goals were to ascertain the best educational placement for him and to predict a long-term prognosis for his future, so we could make plans for what might lie ahead.

We took him to The Exceptional Children’s Foundation at the Johns Hopkins Hospital Clinics, in Baltimore, Maryland, a highly esteemed institution. We had great expectations as we approached our two-day sojourn there. We were to be greatly disappointed. 

Everything went wrong, mostly because the testers did not pay attention to the materials Andy’s teacher and I had provided. By the end of the second day of tests, when we were called in for The Evaluation, our hearts were heavy. We were prepared for the worst but we could not, even so, have anticipated what we heard.

“Your son is untestable. He will never learn to speak. He will never learn to read or write. You must put him in an institution immediately. If you do not, his care will cause your marriage to fail and damage any other children you might have. He will be a drain on society. There is no alternative.”

I felt so angry, I dared not speak. 

The next day, as we drove home, Richard began to talk about placements. I agreed to visit two boarding schools, but we could not afford to spend Richard’s entire salary on either of them. I would not have agreed to spend a penny on such a venture, anyway. I knew Andy would talk like the rest of us. (I did not, then, realize he had brain damage and a linguistic challenge.) I knew he would read and write, and live alone, and have a job and a car. I knew I would help him realize these things; and I knew no one and nothing would stop us.

When Andy reached adolescence, as happens to many autistic/schizophrenic youth, he often became violent. While I underwent the most frequent expression of his temper, others felt it too. The private school he attended expelled him. He then went to a succession of public school classes before he finally landed in a good situation in a high school class with one major advantage. They had a contract with Goodwill Industries for job training; Andy participated in that program.

However, his temper frequently got out of control on the high school campus. One day, his guidance counselor called me. He told me Andy had so much difficulty because I put too much pressure on him to be “normal.” He said, “Andy will never get a job. He’ll never have a place of his own and a car. He’ll never go to college. You have to tell him he cannot do these things so he won’t feel so much pressure.” I argued with the counselor, but I could not, in the end, argue with the fact Andy had fights almost daily, so I agreed to an experiment. I would try to do what the counselor recommended.

That evening, I talked with Andy. I told him the counselor called and told me about the many fights. The counselor thought Andy had too much pressure. I said, “Maybe you won’t be able to have a car and a place of your own and go to college, after all. Maybe you don’t have to try so hard. Maybe you can take it easy.”

It didn’t work. Things didn’t really get worse. They couldn’t get much worse. But Andy became angry at me again. He didn’t act violent toward me; he just stopped talking to me. Busy in graduate school, I really didn’t think about it or pay attention to his anger, in the moment.

He did graduate from high school. He got a job. He went through an independent living program and got a car and his own apartment. When Governor Jerry Brown mandated each state hospital had to hire a quota of developmentally disabled persons, Andy became the first person hired at Fairview Developmental Center. (He retired from that job, with full benefits, forty-two years later.) He also attended the community college, where he took art classes. With twenty-three years of diligent effort after work and on weekends he got his AA degree!

After the first couple of years of independent life, however, he went through a pretty rocky period of clinically significant psychosis. During a touch-and-go month, he managed, with the help of many friends and his parents, to keep his home, his car, and his job. One morning, after a 3:00 am bail-out by his Dad with a tank of gas in the middle of nowhere, he called me in a rage. He ranted for nearly an hour about nonsense. Finally, he started talking about the time I’d told him he couldn’t get a car, a job, or a college degree. 

“Why did you do that?” he screamed at me through the phone.

I sensed, somehow, this to be the crucial point of everything. I took a deep breath and paused to be sure I got it right.

“Because,” I said, “the counselor told me to. I didn’t want to. I didn’t think it right. Remember? I always said you could do those things. I always believed in you. I had worked hard for years to help you get that far, and I wanted you to go all the way. But you were having big problems at school. You were fighting with the other kids all the time. The counselor told me it you did it because I put too much pressure on you, and I had to stop. I had to make it easy for you. The counselor said the teachers and the principal all thought so, too. I didn’t like it; I cried. But I had to do it. They were the authorities, and I just the parent. You see? I did the best I could do!”

A long pause followed. 

All the rage gone from his voice, Andy said, “I didn’t know all that. You should have told me.”

We talked for about a half-hour about that, and other things, too. His psychotic episode ended right then.

I learned a valuable lesson from that experience. Something I’d said for years is true. We all do the best we can do at any moment in time with whatever we have to work with: ourselves, our minds, our feelings, our education, our experience, our caring, our surroundings. Right now, this minute, in this circumstance, we do what seems best. It is the best we can do; we can do no different and no better. No one can judge us for it. In that situation, they would do just the same. What we do is the best we can do.

First Blog

This is the first Blog I have attempted to write, so please bear with me as I stumble and bumble my way.

My Blogs probably, in the grand scheme of things, will be shorter than most. There are at least two reasons for this. 

The first reason is that I don’t want to wear you out or bore you.

The second is that the topics I know enough to write about have already been used. Most of what I’ll have to say is a distillation of all I’ve encountered about each topic, gleaned over the years from so many sources it would be frivolous to mention them all. When I stimulate your interest in some way, and/or you have more information about the topic to share with me and others, please feel free to Contact Me.

Here’s a short list of topics that may find their way to this blog. If you’d like to add (or delete) a topic, please let me know. I expect the list to grow.

  • Autism and other conditions that can affect or change a person’s life—everything from “How to Be One,” to “How to Help One.”
  • Why each of the books on two shelves in my bookcase is there. These books have informed my life. They taught me something by virtue of their content, or they stimulated my interest in the art of writing well, or both.
  • Other book reviews—an eclectic variety of topics and styles.
  •  “How to ….” pieces about a wide variety of things, from how to cope with a parent with dementia to how to procrastinate when you’re faced with a major project.
  • My favorite recipes. 

I’m sure I’ll think of more topics. I look forward to both your comments on anything you encounter on this website and suggestions for other topics. Some of these latter may be out of my ken, but I’d like to hear about them.

Thank you for reading this far. Stay tuned. I hope to change this blog weekly.

Cybele