Category: Blog

This BLOG is the third of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived with his successful struggle with autism. Perhaps reading about them will encourage others to try them (if they have not already done so). Even better, perhaps others will turn to the Suggestions page on this website and share their successes with others.

When (I thought) Andy and I had finished the first complete draft of our book about life with his autism, I sent a small sample of it to Temple Grandin, the well-known advocate for people with autism. I asked for her comments. As soon as she received the sample, she called me. She told me several things she thought might improve the book. She repeated one suggestion again and again. I must include loud and clear information about “what worked.” Without that, she said, all the rest of the story would be useless. I reviewed the book with her suggestions in mind and agreed. Indeed, I really must include specific information about actions and techniques that clearly helped Andy. I needed another chapter. As I wrote that chapter, I realized the information in it belongs on this website. I present it in this, the third of three BLOGs.

Of course, what I present here cannot be a complete guide to all attitudes and behaviors, all techniques that work for all people with autism. There can be no such guide, because—like all the rest of us—all people with autism are unique individuals. No two are exactly alike, and no two can be treated in exactly the same way in every situation. These are things that worked for Andy and me. As we walked our walk, I saw they often worked for others. I hope many, if not most, work for you.

BEHAVIOR MODIFICATION is a well-known, long-practiced method of one-on-one teaching used in many situations where traditional styles of teaching do not work well. Simply put, behavior modification rewards successful learning and (usually) ignores failure to learn. Some practitioners employ a negative reinforcement when the student fails to learn. However, most of the time simply ignoring the failure and rewarding success not only is sufficient for the task at hand it gives the student increased self-confidence in general. The reward for success may be so small as to seem insignificant: an M&M, a piece of a cookie, a penny (although monetary rewards usually are not a good idea), part of a toy the student wants—anything the student values. Sometimes, a smile and a “Thank you!” are all it takes. Once the reward has been given, the next task is introduced without pause.

Here’s an important “what worked:” It doesn’t matter at all what name or title is given the school or class your child with autism attends. Not at all, although the title is sometimes useful in locating an appropriate setting for his or her education. Sometimes. What matters is the way the teacher interacts with the students, particularly with your student. The teacher must enjoy the job. She or he must believe every student is unique and deserves to be treated as an individual. Your student, as well as every other student in their classroom, should be welcome there, special in some way, and important to the teacher. Each student should experience a special connection with the teacher. Every teacher in the world should create this atmosphere, of course; it is especially necessary for students in every special education class.

Ideally, your child should be able to see and learn from the daily activities in his or her classroom, especially how they are relevant to their future life. Trips to the grocery store, cooking classes, sewing hours and the like not only provide valuable experience in and of themselves, they provide real “data” for spelling, math, reading, social studies, health and other parts of daily education.

As primary advocate for your child, you should communicate often with the teacher or tutor. Doing so, even if you spend only ten minutes a week “checking in,” indicates your interest in both academic and social aspects of your child’s development.

Also, as your child’s advocate, you should daily query about his or her progress and about events of the day. It is not useful to ask, “How was your day?” Such a question almost always evokes a non-answer. Instead, try something like “Did anything exciting (or bad) happen, today?” or “What did you learn, today?” or, if there’s been trouble recently, “Was Sheila mean to you again, today?” Ask specific questions. Try to ask questions that require more detail than a “Yes,” “No,” or “Fine” answer.

Last, but definitely not least, if you see or sense your child is in a situation harmful to them (academically or otherwise), do everything you possibly can to locate a better school/class/teacher for them. This search for the right person can be a life career, or so it may seem. It is certainly the biggest, most challenging, and single most effective task you will encounter. Don’t give up; the reward is worth the effort.

The short form of all I’ve said, above, about “What Works:” is this: Love is the best answer. Pay attention to your child or person with autism, and honor as much of their individuality as you possibly can, within sensible reason. Encourage them, but don’t push them too hard and don’t give them the idea they really can go to the moon. Reward them for good behavior and help them learn about not good behavior by not rewarding such behavior.

I repeat: You are the most important person in your child with autism’s life. Be sensitive, be sensible, be sensational!

This BLOG is the second of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived with his successful struggle with autism. We hope reading about them will encourage others to try them (if they have not already done so). Even more, we hope others will turn to the Suggestions page on this website and share their successes with others.

When Andy and I finished the first complete draft of our book about life with his autism (Andy Speaks; Mother and Son Talk About Life with His Autism), available on amazon.com, I sent a small sample of it to Temple Grandin, the well-known advocate for people with autism. I asked for her comments. She called to tell me about several things that might improve the book. She repeated one suggestion again and again. I must include loud and clear information about “what worked.” Without that, she said, all the rest of the story would be useless. I agreed, and wrote another chapter in which I included specific information about actions and techniques that clearly helped Andy. As I wrote that chapter, I realized the information in it belongs on this website. I divided it into three BLOGs; this is Part 2.

Of course, what I present here cannot be a complete guide to all attitudes, behaviors, and techniques that work for all people with autism. There can be no such guide, because—like all the rest of us—all people with autism are unique individuals. No two are exactly alike, and no two can be treated in exactly the same way in every situation. These are things that worked for Andy and me. As we walked our walk, I saw they often worked for others. I hope many, if not most, work for you.

Many people with autism have IDIOSYNCRASIES that seem totally irrational to the rest of us. One example is a boy I met who carried a length of string (about eighteen or twenty inches long) with him at all times. He kept it in his shirt pocket and, when stressed, he took it out of the pocket, held it in his right hand, and ran it through the fingers of his left hand. (His mother said she’d learned to ensure he always wore a shirt with a pocket.) Other persons must count to ten before they can perform certain activities. Or they have to spin around a certain number of times before they enter a room. Such idiosyncrasies should be tolerated and respected; mayhem can and often does occur if they are not.

Only slightly different from idiosyncrasies are MONOMANIAS—topics of great interest to the person with autism (and, quite possibly, of no interest at all to anyone else). The autistic person generally knows virtually everything known about as many aspects of the topic as interest them (not necessarily everything known). Some are creative about their interest, and express it in reports and other documents, models, and even movies. However, in many situations (especially at “social” events) the person with autism will talk about only the topic of his or her interest; they may openly refuse to talk about or listen to any conversation about anything else.

Some people with autism don’t possess the potential or ability to live an independent life when they reach maturity. A number of these persons live in group homes. Many go to jobs every day in workshops where they manufacture small items for direct sale or for incorporation in larger equipment. Most of these people are happy in their lives.

One GOAL of a significant number of persons with autism is to live a “normal” life, like “everybody else.” Some do become fully independent, with regular jobs, apartments, cars, and financial success. A few go to college and acquire degrees. I’m not aware of the statistics, but I’ve observed most of these people encounter many situations in which they’re told they will never be able to lead a normal life and they will not experience any of those regular benefits of independence and ability. I’m pretty sure a number of them are told they will not go to, let alone graduate from, college. I am equally sure each of them has benefitted from the ENCOURAGEMENT of at least one person, often several people, who believed in them and helped them in many ways as they followed their dream to success.

Whatever their goal, and no matter how improbable it seems, the person with autism deserves encouragement and assistance as much as does any other person. They never should be told, “You’ll never graduate from college,” “You’ll never get a job as an artist.” We say to their “normal” siblings and cousins, “My! That’s going to be a long, hard road; I know you can do it!” or “A job as an artist is hard to find; I wish you luck!” The teen-ager with autism needs the same EMPATHY, ENCOURAGEMENT, and ASSISTANCE. They need it most from those who matter most: their parents, teachers, tutors—those who’ve already helped them so much.

When you work with a person with autism, you can and should MAKE USE of any monomanias and/or goals of theirs. These provide excellent topics upon which you can build as subject matter for many educational activities, both academic and social. If models of cars is a PASSION: How many models of Chevrolets can you name? Fords? Toyotas? Add them all. How many is that? Subtract the models of Fords. How many are left? ….  Look at the cars in the parking lot. Name the colors of the cars. ….  Write the names of the colors. ….  For an older student: Here is a map of our county. Write the names of the cities you might live in when you move away from your parents’ home. …. You get the idea!

I repeat: You are the most important person in your child with autism’s life. Be sensitive, be sensible, be sensational!

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.