February 1, 2012
The intent of these vignettes is to get beyond the sterility of the uncertainties of diagnosis and treatment of these very interesting young people. The dramatic increase in the presence of Autism spectrum disorder (ASD) is so recent, the spectrum is so wide that there has not been much in the way of ‘this is what they are like in real life’ that is seen by parents and therapists. In addition to impairing our understanding it has prevented us from creating adjustments to help realize some of the real and unusual potential of some.
Thus, I will ignore the usual discussion of behaviors (impaired social relations and communication, restricted interests, repetitive behaviors) in favor of descriptions of how they appear in daily behavior. One problem is that the terms are too limited in their description of the complexity of human behavior. For example, “impaired social relations” tends to be understood as having difficulty in making friends. It does not alert us to social naiveté, susceptibility to teasing and bullying, feelings of rejection and exclusion, depression and anxiety, etc. Similarly, “restricted interests” does not alert us to the autism/Asperger literal style of learning that makes them focus intensely on things that interest them, but makes them makes them literal and prone to ‘all or nothing’ polarization in their view of the world. This is why they are scrupulously honest – they don’t know how to deceive and lie, even with polite social untruths. In addition, they have difficulty in rationalizing and forgetting negative experience, so they have long memories that control their behavior and impair their ability to learn from experience. Equally important, and not included in the diagnosis is what is called “executive functions”. These are the abilities to think ahead, analyze, plan and organize themselves to do things in an efficient and effective manner. Finally, many have severe inability to ignore environmental complexity, too many stimuli or distracting noise’, leading to sensory vulnerability.
ALAN: Alan is a young adult whom I have seen for the past 25 years. I first saw him at age 2-1/2 years when he showed all the usual symptoms of autism. He did not smile or relate to his parents, he did not communicate, and flapped his hands when excited. I had never seen a child with autism, since the condition was very rare 25 years ago, and referred him to a preschool program that was run by a speech-language therapist (Linda) who liked working with ‘difficult’ children. Thus, she and I began working with Alan by playing, stimulating, and trying to get him interested in things. BF Skinner (Harvard) had shown that behavior reinforcement with food or candy could have dramatic effects on training behavior (he showed a video of 2 pigeons ‘playing’ ping pong by pecking the ball back and forth for a food reward!). This led to a new field of psychological science now called Applied Behavior Analysis, so Linda and I began using an early form of ABA called Discrete Trial Training. This consisted of getting Alan to show a positive behavior “Alan, look at me”, and rewarding him with praise and a M&M candy. He responded quite rapidly and he went on to learn how to communicate thanks to a newly developed teaching program called PECS (Picture Exchange Communication System) in which Alan got rewarded when he used pictures to communicate. We used pictures of objects that also had the printed word, and we paired that with the sound of the word. After 3 years of this intensive ABA training, Alan was good enough at communication that he entered special education kindergarten where he got additional support via an aide paid by the parents (the Felix decree was many years away). We continued this until he was in the 3rd grade, when he did so well that he was mainstreamed into a regular class. I still remember telling Alan’s mom that either we had made a mistake in the diagnosis (since Autism was seen as untreatable), or amazingly, he had somehow gotten better. She looked at me thoughtfully and said, “OK, but lets keep in touch, because he is still different from his friends”. We did this, and Alan did extremely well in school academically, but as his mom was aware, he had a number of other issues that interfered with his academics. He was a very focused child who would learn a great deal about things that interested him (trains, schedules, geographic names), but he was not interested in the things his peers were, which led to his becoming isolated and subject to teasing and some victimization. In addition he was highly distractible and had complained about the routine distractions of a school classroom. Until we got him earplugs, the school classroom bell caused him to become fearful and run from the room.
Neuroscience comment: One of the major findings from recent advances in brain imaging technology (MRIs) is a pervasive lack of the connective brain cells (interneurons) that tie together the brain’s multiple functions of perception, analysis, integration, memory, decision, and action. Social relations in particular require extremely complex integration, so it is not surprising that impaired connectivity of brain structures result. On the positive side, some autistic children have excellent memories for information that is factual, predictable and not subject to multiple changes. This type of “static information” versus “dynamic information” in well-defined, restricted areas of knowledge can be a real strength, causing them to become deeply interested in some subjects. The down side of a long memory is that many of these youth are unable to forget negative life experiences such as the social differences and teasing they experience.
Thus, despite his differences, his behaviors were manageable until high school, when several of the courses involved subjects about which Alan knew a lot. He was so upset when the teacher didn’t cover all the material about one of his favorite subjects, that he would interrupt her in class, raise his hand, and politely tell her that either she had left something out or she had made a mistake. At first the teacher tried to ignore or humor him, but he was so serious and persistent that soon she became directive and told him to sit down or go to the principal’s office. Predictably in hindsight, Alan happily went to the principal to fill him in on all the missing information which of course only aggravated the situation. Both the mom and I tried to tell him not to interrupt, and he would promise, “I’m sorry, I’m sorry”, but would do it again the next day. It got so bad the school was planning to put him back in special class, so I tried a technique called “Social Stories” developed by a speech-language educator Carol Gray. On a 3 by 5 note card I wrote up a brief ‘story’ called School: “When in school the teacher’s job is to teach and the student’s job is to listen and learn. If the teacher leaves something out, she has a reason for that, so the student must write down what is left out and give it to the teacher after class”. After a week of daily prep, Alan began doing that, and the teacher called his mom telling her how impressed she was with how smart he was in some topics. Her attitude changed, the threat of special class disappeared, and after some more praise the teacher got Alan to tutor some of the slower students. This led to even more benefits – Alan actually became liked by his classmates instead of being a ‘wiseass nerd’, and his social oddities were excused on the grounds that he was smart. Thus he survived high school and instead of ‘therapy’ or special education, people agreed he needed to go to college.
Alan had no difficulty getting in to college, but his parents and I totally misjudged his ability to function in a college dorm. We thought that he could do it and did not even notify the college that he might have a problem! This state of affairs lasted one month, when the parents were told that he was going to be expelled on the basis of not going regularly to class, seldom handing in assignments, wandering around the campus at night, and having his room filled with clothes and partly eaten food. At this point I met with the freshman dean and described the situation. Thankfully, the dean was intrigued by his unusual academic strengths, and allowed the parents to hire a “life coach” whose job it was to teach Alan how to keep his room neat, have a regular schedule, go to class and do homework. Although he resisted some of it, he understood that failure to shape up meant leaving college, which he did not want to do because he was looking forward to graduate school on the mainland!
So, he did shape up, and did graduate from college with a B+ average (reflecting A’s in courses he liked and borderline C’s in the rest). He also got a year of postgrad work in Business Administration, but he had outgrown the life coach support, so his parents tried to help him get a job that fit his degree and interests. As before we tried to focus on the executive function problems, but this turns out to difficult, since every situation is different and it’s hard to apply a common approach. What the parents was to loook find a potential job that looked like one that fit his skills, and they one of them went and talked with the employer ahead of time. This is obviously a temporary solution, but it helped Alan build up a resume of job experience, so when he went in for an interview he would hand over his resume and apologize that his social skills were not as good as his work skills.
Comment: We have learned since then from adults who have been successful in finding jobs where they can use their abilities that it works much better to give the interviewer an advance notice of social limitations and present them with a bio of written descriptions of skills and abilities. I have several talented professionals who take their computer to the interview and use PowerPoint or a demonstration of what they can do to present themselves!
Unfortunately, Alan and many like him are unable to find a job placement that is stable and lasting. In my psychiatry practice specializing in autism spectrum disorders, I have seen several dozen talented adults with similar problems. Those who have been able to create private practice in which they are their own boss have managed to do well. These have included several physicians and attorneys who specialize in technologic specialties, several professors, a tax accountant and a number of (usually) men who work in the broad area of information technology. In every instance the history is nearly identical with that of Alan – difficulties in elementary school, survival in college, success in graduate school, and better fortune than Alan in finding independent employment.
Is there a moral to this story? Hopefully, given that the rise in the number of people with Autism Spectrum conditions is a recent phenomenon, it will be possible to recognize this important loss of intellectual potential and create supportive mechanisms by which they can be identified and provided with the needed social structure and support in practical life skills.
If we do not do this (the equivalent of letting disabled people who can’t function live without the support of the Americans With Disabilities Act), we will simply be accumulating a huge social and economic debt.